BbBoston

Who Knew? The Feds.

2010-08-07T16:57:00.000-07:00

We're battling from state to state to gain recognition for the epidemic which is Lyme, to protect doctors who want to treat patients with Lyme, to force insurance companies to cover said treatment and to push for more research for better testing and treatment options. State by state, inch by inch, taking years to get even one of those goals met in one state. Why does it take so long? One reason is that everybody claims there is no understanding for the need. We must prove our case each and every time anew.

Yet, who did know that the "widespread misuse of the current Lyme disease surveillance case definition" was being "misused" to set a standard for care? Who did realize that for proper tracking, research and care we needed to "to include a broad range of scientific viewpoints"? Who has already understood that some patients "have encountered some difficulty when applying for assistance through SSA offices"?

Well, the federal government did. Look at the text of this bill signed by President Bush in 2001:

Public Law 107-116
Departments of Labor, Health, and Human Services, and Education, and Related Agencies Appropriations Act 2002

Signed by President Bush 1/10/02

(Passed by the Senate (11/06/01, 12/20/2001) and House (10/11/01, 12/19/01) and included as part of the final bill was signed into Public Law)
Centers for Disease Control and Prevention Lyme Disease
The Committee is deeply concerned about the safety of the Lyme disease vaccine (LymeRix). Over 1,000 adverse event reports were filed with the Food and Drug Administration from December 1998 to October 2000. The Committee encourages CDC to work closely with the FDA to ensure that all adverse event reports are thoroughly and expeditiously investigated to ensure public safety as the vaccine is being distributed. Investigators should pay particular attention to patients' reports of arthritis when evaluating these reports.
The Committee recognizes that the current state of laboratory testing for Lyme disease is very poor. The situation has led many people to be misdiagnosed and delayed proper treatment. The vaccine clinical trial has documented that more that one third (36 percent) of the people with Lyme disease did not test positive on the most sophisticated tests available. The ramifications of this deficit in terms of unnecessary pain, suffering and cost is staggering. The Committee directs CDC to work closely with the Food and Drug Administration to develop an unequivocal test for Lyme disease.

The Committee is distressed in hearing of the widespread misuse of the current Lyme disease surveillance case definition. While the CDC does state that `this surveillance case definition was developed for national reporting of Lyme disease: it is NOT appropriate for clinical diagnosis,' the definition is reportedly misused as a standard of care for healthcare reimbursement, product (test) development, medical licensing hearings, and other legal cases. The CDC is encouraged to aggressively pursue and correct the misuse of this definition. This includes issuing an alert to the public and physicians, as well as actively issuing letters to places misusing this definition.

The Committee recommends that the CDC strongly support the re-examination and broadening of the Lyme disease surveillance case definition by the Council of State and Territorial Epidemiologists. Voluntary and patient groups should have input into this process. Currently there is just one definition (`confirmed case') of seven possible categories. By developing other categories while leaving the current category intact, the true number of cases being diagnosed and treated will be more accurately counted, lending to improved public health planning for finding solutions to the infection.
The CDC is encouraged to include a broad range of scientific viewpoints in the process of planning and executing their efforts. This means including community-based clinicians with extensive experience in treating these patients, voluntary agencies who have advocacy in their mission, and patient advocates in planning committees, meetings, and outreach efforts
National Institutes of Health - Office of the Director Lyme Disease
The Committee recommends that the NIH improve its communication across Institutes in order to better coordinate Lyme disease research and outreach to public and private scientists with the goal of stimulating research interest in this field. The Committee encourages the Office of the Director to involve NIAID, NHLBI, NINDS, NEI, NIMH, and NCCAM in promising areas of research. The Committee urges NIH officials to identify appropriate NIH advisory committees for Lyme disease representation and ensure the appointment of qualified persons. The NIH is encouraged to include a broad range of scientific viewpoints in the process of planning and executing these efforts, including community-based clinicians with extensive experience in treating these patients, voluntary agencies who have advocacy in their mission, and patient advocates.

Social Security Administration
The Committee understands that some patients with Lyme disease and other tick-borne disorders have encountered some difficulty when applying for assistance through SSA offices, due to SSA employees' unfamiliarity with these illnesses. SSA is encouraged to work on developing educational materials for SSA employees to facilitate a better understanding of the potential debilitating effects of these disorders. The Committee suggests that SSA collaborate with clinicians who have expertise on the multi-system chronic effects of Lyme, as well as patient and voluntary communities, to accomplish this goal."

Thing is: it's 2010 and none of these issues have been addressed. That's nine years later. What happened?

MA Protects Physicians Who Treat Lyme

2010-08-01T14:39:00.000-07:00

Massachusetts Lyme disease advocates pose with Governor Deval Patrick in his office following his signing of the FY2011 budget, which included legislation which will protect physicians who treat Lyme disease longer than 30 days. From left to right to right: Robin Lemieux of Groton; Susan Fairbank-Pitzer of Danvers; neurologist Luz Jacqueline Ruiz, M.D., of Harvard, MA; Donna Castle of Groton; Governor Duval Patrick; Representative Robert Hargraves (R-Groton); clinical psychologist Sheila Statlender, PhD, of Newton; and Jayme Kulesz of Groton.

Last Fall, I testified at the Massachusetts State House. I was there to support legislation which would protect physicians who treat patients with Lyme Disease. There has been a chill in doctor's offices across this state. It is a traumatic challenge when you are unlucky enough to end up with a case of Lyme which leads to persistent, debilitating health problems and discover that you can't find a doctor in your state who is willing to help you. They are unwilling to help either because they have been grossly misinformed or they are afraid of being punished by the state health board and shunned by their peers.

It was a long, uphill battle, but dedicated advocates trudged on year after year and we finally have a first step in the legal process which will potentially give patients a chance to find a treating physician. Here is the press release from the Lyme Disease Legislation Action Group:

For Immediate Release:
Jayme Kulesz , Lyme Disease Legislation Action Group
978 448-2696 (h)
978 273-0037 (c)
jkulesz@charter.net

Lyme Disease Legislation for Physician Protection signed by Governor Patrick

Massachusetts Governor Deval Patrick signed Lyme disease legislation into law as outside section 67 of the FY 2011 budget, effective July 1. "The intent of the law is to protect the freedom of Massachusetts doctors to treat Lyme disease comprehensively according to their best professional judgment, citing specifically the option for extended antibiotic treatment beyond 30 days," according to Brenda Boleyn, Chairperson of the Cape & Islands Lyme Disease Task Force, an advisory group appointed by the Barnstable County Commissioners.

The legislation provides the definition for Lyme disease which includes, “the presence in a patient of signs and symptoms compatible with acute infection with Borrelia burgdorferi; or with late stage or persistent or chronic infection with Borrelia burgdorferi, or with complications related to such an infection.” In addition, the legislation provides for updating the Lyme disease definition if other strains are found to cause Lyme disease.

The legislation also legitimizes and defines the “clinical diagnosis“ of Lyme disease. This may be based on knowledge obtained through medical history and physical examination only, or in conjunction with testing that provides supportive data for such clinical diagnosis, as determined by the treating physician.

Governor Patrick’s signing of this important piece of legislation is the result of months of work by a core legislative action group, who worked with Representative Robert Hargraves (Groton-R) and Senate Majority Leader Fred Berry (Peabody-D) in drafting the bipartisan legislation and meeting with a number of state officials over the last year. “We are deeply grateful to Representative Hargraves and Senator Berry for taking time to meet with us and to understand the reasoning behind this law,” said clinical psychologist Sheila Statlender, Ph.D., a member of the legislative action group.

“Representative Hargraves and Senator Berry led a large team of legislators that supported this law and spent countless hours working to insure it was headed to the Governor’s desk for signature,” added Statlender. “This is an initial step towards helping the many Massachusetts residents suffering from chronic Lyme disease, and perhaps will lead to their being treated in their own communities, instead of having to travel hundreds of miles out of state for treatment.”

Representative Hargraves expressed gratitude for the outpouring of support from Lyme disease patients across the Commonwealth who sent letters to their legislators, the Governor and the Department of Public Health. “This groundswell of support from Lyme patients and their families was key to the signing of the legislation by Governor Patrick,” said Hargraves.

Following the signing of the legislation, Governor Patrick took the time to meet with members of the legislative action group and Representative Hargraves, and expressed his support.
Massachusetts joins Connecticut, Rhode Island and California as the fourth state in the country to sign legislation that protects physicians who treat Lyme disease long term. Language of the legislation is posted on the Governor’s website.

I say "first step" because we all know that the real key to getting treatment is getting your health insurance to pay for it. Sick people, particularly when the illness is debilitating and you become unable to generate an income, can't afford to pay for the treatment on their own. We buy health insurance specifically for this reason. Even if we wanted to, the cost of some treatments is so exorbitant only the extremely wealthy could afford it. We need our insurance policy to actually insure that our health care needs are met.

Still, your doctors have to be legally protected from sanctioning first, so this is a critical, foundational first step. We must acknowledge the accomplishment here and the significance. Its has required very arduous work and our community is both small and living with illness. So, this has been no small feat. We hope the world can understand that we might need to rest and rejuvenate before setting our sights on the next huge goal: requiring that insurance companies cover treatment ordered by a licensed physician.

That work will require going head to head with the gargantuan power of the insurance industry. Not something we look forward to. For now, we will celebrate this victory and envision doctors coming out of their offices and into their reception areas to welcome all the Lyme patients who need their care.

Beast of Burden

2010-07-26T08:33:00.000-07:00

I've been reflecting lately on the concept of people being a "burden to society." The topic is in the air with our economy in the tank and the political battles over extending funding for unemployment benefits. In modern U.S. politics, one of the defining differences between Republicans and Democrats is about whether to see those who can't provide for themselves as a burden to society or as vulnerable members who deserve our support, because "there, but for grace, go I."

Being a burden is not an abstract concept for anyone who lives with a chronic, debilitating illness. While the levels of financial, social and emotional support vary for each of us, I feel fairly confident in stating that almost every person living with illness has had to grapple, at some point, with feeling that she has become nothing but a burden.

Beyond the cultural messaging and the immediate context of illness, I was also put in the ring with this beast by my father. While some of the things I will describe are brutally blatant, I know that women, throughout history, have been handed this legacy. A legacy of having our very worth as a human being quantified by dowries and zeroed out if there is not a father or husband to claim us. Certainly, it is less so in our so-called feminist era, but the inherited psycho-social patterns aren't erased that quickly. We still see the messaging everywhere. This is a very known issue. It's Women Studies 101. I probably can't add anything to the body of work on the larger cultural phenomenon.

What I can speak to is the impact on a personal level, both as a woman and as a person living with chronic illness.

My father had a knack for rather crassly expressing that which is generally more subtly expressed in our society, particularly when it came to male/female relations. Sometimes I'm thankful for that. At least it's made very clear what you're up against. For example, he made it very clear that he considered children a financial burden which he looked forward to being released from. He often said to me when I was a child, "when you're 18, you're no longer my responsibility." He said it as though he was relishing the day. Though he had always told me to do well in school, because I could go to any college I got into, when the time came, he paid for only one year. I turned 18 during my freshman year. In the summer before my sophomore year he told me I had to pay for it myself from then on. Later, even when I asked him to co-sign a $17,000 student loan, which I was paying, he would tell me that I had owed him that money because it was on his credit report. Somehow, I owed both the lender and him.

I grew up with only sisters, no brothers. So, I have no way of knowing if the concept of "children as financial burden" would have applied to sons. There are hints, however. As I got good grades and was an accomplished athlete in school, my father would encourage me to do anything I could to ensure that I would be able to provide for myself as an adult. That's a fine principle, until his personal motivation for that is explained. The subject of being self-sustaining was always coupled with "because otherwise you'll be a burden to a man." As adults, my sisters and I learned that as long as we were self-sufficient or transferred our burdensome selves onto another man's accounts he loved us and was proud of us. If another man would take us on, he would even reward us with financial gifts. Really, he was rewarding the man.

Here's a stark example of how my father's accounting of his children played out. About 15 years ago, my youngest sister got married. She and her husband received from my father $20,000 for a downpayment for a house and he self-financed their mortgage at a very low interest rate. It was a lovely gift and not such an unusual thing for a financially well-off father to do for his child. On the face of it it sounds awesome, particularly as he publicly proclaimed that my other sister and I would receive the same gift if we got married.

However, its not that simple. My other sister was a single mother. She had gone on welfare to survive. She was struggling, but was going to college to finish a degree in the hopes of a better life. It was galling to think that he sat in that room, with all those guests, looking like such a loving and generous father when sitting right next to him was a child in need. This man who saw welfare as an unfair burden to "those of us who earn our way" and who lived a financially comfortable life, did not offer any financial support to his daughter in need, but offered support beyond expectation to the one who would have been fine without it. The gift wasn't for his daughter. It was for his new son-in-law, to lessen his burden. I'm happy for my sister and brother-in-law, what a wonderful gift to receive. The questions and emotional complexities come from something else: why does a daughter have to get married to receive the financial support for a home?

Fast forward two years later. I get engaged. Do I receive the wedding gift? No. Why? "Because I've gone through all my checkbooks and you've cost me more than any of my other daughters." (That would be that student loan and a legal bill he helped me with when I was younger.) I have been too much of a burden. I was no longer worthy.

Until five years ago, I knew that this concept of being a burden was in my psycho-emotional makeup, but I didn't really have to face it down. I was self-sufficient. In every relationship I was in, I made sure to be an equal financial partner. I earned my keep. I was smart and worked hard and was resourceful and felt confident that I would always be able to provide for myself. The beast was caged.

Until I got sick. It might have been easier if I'd gotten something really clear and obvious, too. If I'd had a physical accident, the moment of my disabling would have been stark. I would have qualified for the disability benefits I'd been contributing to during all my working years. If I had something like cancer, tests would have revealed a tumor or bad blood cells and the travails of treatment would be more familiar. Perhaps, just perhaps, if it were something like that, the normal social expectations for those conditions would have lessened how big the beast would be when he escaped the cage.

Instead, I got sick slowly and vaguely. I was so tired. I was achy. It came on gradually and not linearly. My knees and feet would hurt so much I couldn't walk. Later, it would be a gripping pain in my neck that would make me stop the car in tears unable to move. Was I forgetting things a lot? I had a young child and new business. Maybe it was just stress.

By the time I knew that something was really wrong, I was so far past the first stage of my illness that it took two years to get a diagnosis. Two years of sliding into further and further cognitive and physical disability. Why am I getting lost all the time? Where did those hours go? I never feel organized, I need a new system. I just did that yesterday? I can't see in the morning. My skin is burning from head to toe. Are you talking to me? Are those words? When did I say that? I did what?!

I crashed. The business crashed. My life crashed. Right into a jungle and there was a trail of debris. Like any jungle, the chronic illness jungle has a vast array of flora and fauna. When you're in it, it is a universe unto itself. It is dense and you can't even see that there is a world beyond its confines. There is the warming sunshine of friends, the nourishing fruit of caretakers, the gigantic insects of symptoms and the scary predators of your fears. When I crashed into my jungle, one of the predators was the Beast of Burden, released fully grown from its cage.

In five years, I don't think one single day has gone by in which I haven't worried about when and how I will generate an income again. When I eat, when I buy clothes, when I need or want anything at all, I am reminded that I am a burden. That I do not contribute. I feel guilty for having needs, much less desires. I berate myself for not having figured what I might do. I'm not reliably available cognitively. Some days I can barely walk from the pain. Others I'm too profoundly tired to move. One day per week is lost to a 6-hour medical infusion and the ensuing sleep. I have a daughter who needs what little energy I have. Who would hire me? I spend a lot of time trying to imagine what I might be able to do to earn a living.

There it is: "earn a living." Its built into our vocabulary. It is our vernacular perspective. One has to earn the right to live. So, what does that mean for those who, for whatever reason, cannot generate an income? What if you aren't earning your living? Are you no longer worthy? Are you simply a drain on society? A burden?

I struggle with these questions every day. While people might say, "you need to focus on healing", that's not really possible. A mortgage must be paid. Food must be purchased. Medical bills pile up. Its always the rainy season. The protective canopy wouldn't exist without it.

I've said this before and I'll say it again. I've been lucky. I separated from my husband in 2001. We have a daughter. So, when it was clear that I couldn't support myself, I accepted his generosity of letting me move back into our house and be financially supported. Neither of us had any idea, at the time, how long this would go on. I hadn't even gotten a diagnosis, yet. Four years later, we're still here. We both talk about finding a way to live in separate homes so we can get on with our lives. It is not fair to him to have been saddled with me, financially. He never, not once, has said anything to make me feel guilty about not contributing financially, though he is clearly stressed. We have come close to losing our house. Still, he will tell me that I need to focus on my health.

Yet, I can't. Every time I forget to do something. Every time I burn something in the oven. Every time I incur a medical cost not covered by insurance - even eyeglasses. Every time I need $5 for public transportation. Or I am gifted a book or a meal. Every single thing I do and don't do, I think about the costs and the increasing size of that beast. He's bigger than Sasquatch. The bigger he grows, the less worthy I feel. He looms there in the jungle, breaking twigs and rustling leaves so that I know he's there. His appetite his huge.

Maybe he'll eat the whole jungle one day.

Lyme is a 4-Letter Word

2010-07-05T10:46:00.000-07:00

I had in interesting encounter last night. I was at a friend's house for a BBQ. Her father was visiting from out of town. He's a doctor from New York. A hematologist.

In a rambling discussion of topics ranging from family backgrounds to the study of languages, I mentioned being at NYU and having a professor who spoke English with such a heavy Chinese accent that I couldn't understand a word he said. My friend's father had gone to NYU. He got both his undergrad degree and his medical degree there. He lives and practices north of New York City now, so I asked him if he still had connections to the NYU Medical Center.

I told him that I had been to a neurologist connected to NYU last year. This piqued his curiosity and we talked about the tests I'd had done there. I explained that I'd had nerve biopsies that confirmed abnormal morphology and nerve conduction exams that confirmed conduction issues. I told him that two neurologist had determined based on these tests that I have Chronic Inflammatory Demyelinating Polyneuropathy and Dysautonomia.

He started questioning: "Well, was there an MRI?", "Was the nerve biopsy definitive?", "Were there any other tests to confirm this? "What kind of tests have you had?" He was skeptical of the diagnoses. A hematologist is questioning the neurological diagnoses of two neurologists.

What struck me right off the bat, was how little he knew of me and my history and how willing he was to jab at the work of other doctors. I was not seeking his medical advice. I was relating a positive encounter with an NYU doctor.

When I explained to him that I had been displaying neurological symptoms to doctors since 2005 and that these tests were definitive and the only other tests I'd ever had that came up with definitive positives were Lyme tests, he stiffened right up and said, "So, you had Lyme once, doesn't mean its active."

Wow. I hadn't said that it was. In fact, I was explaining that since there seems to be no consensus on what all the Lyme tests mean, we were actively pursuing other explanations for my symptoms. I did inform him that I'd had a recent test that supposedly did confirm active infection, but that I wasn't left with any sense of confidence about that, either, given so much conflicting documentation.

His retort - and I say retort, because at this point, he clearly seemed to have stepped into conflict mode, when we had been simply discussing my experience with a doctor from NYU as a matter of people making connections - "There is no controversy about Lyme tests, the IDSA is just having to stand up to a lot of quacks."

Conversation over. He barely spoke to me the rest of the evening, after having been energetically engaged up to that point.

Lyme is a four-letter word. Those of us who have had to live with Lyme, know it as a kind of curse, certainly. Apparently, the mere utterance of the word is a curse, an offense. It certainly has power.

I was not trying to discuss Lyme. Nor was I at all interested in going through the history of my medical journey, since it doesn't reflect well on the profession and I had no need to cast any shadow on this man I did not know. In fact, I was relating one of my better experiences of a doctor as a way of praising NYU. Further, I was purposefully highlighting the concept that my neurological symptoms could be explained with diagnoses other than Lyme. I even avoided mentioning that the docs think having Lyme generated these disorders. Still, in response to his questioning about whether I'd ever had any definitive tests, I mentioned Lyme, just mentioned it and the conversation derailed. His entire demeanor changed.

Here we can see how progress on this topic is impossible. By generically labeling those who oppose the IDSA stance as quacks, he has summarily dismissed any consideration of their viewpoints. It doesn't matter that the IDSA admits that their guidelines are based on opinions, not evidence. It doesn't matter that there is a growing body of research which contradicts the IDSA opinions. If a proof-positive piece of research came from someone who contradicts the IDSA, it would not be given a chance at daylight, because they are "quacks".

This is how you stifle dissent. You make it clear that you are willing to be personally offensive to anyone who disagrees, rather than simply hearing someone out and pointing out any flaws in their ideas. In short, you are a bully. I certainly wasn't going to provoke a debate about this as a guest at someone else's house. I'm not well-enough equipped to have the debate with an entrenched doctor, anyway.

While someone with this style may think he has won something, what he lost was my respect. Additionally, he left the scent of fear. The establishment is feeling threatened. That may be a good thing. As long as, the threat is out of a search for truth and not based in fear, itself.

I'll write about the fears that surround Lyme tomorrow.

Bacterial Disease, Not A Crayon

2010-06-25T10:20:00.000-07:00

This does not cause Lyme Disease:

Lyme is not a big bug that you can see.

That tick is one delivery agent of this:

It is a spirochetal bacterium called Borrelia Burgdorferi. It can only be seen under a microscope. It invades tissues throughout the body.

I wish we would stop using the tick image as almost the logo or branding for Lyme Disease. Certainly, knowing about ticks is key to prevention. But it is not the tick which we fight when we fight for our lives. It is a bacteria. A very serious bacterial disease. I think people lose sight of that when we associate so much of the discussion of Lyme with the images of ticks.

I'm also a little dismayed by the trend of late to associate diseases with cute colors. I know it seems natural since this disease was originally identified in Lyme, CT to use the lime color for PR and awareness. But there's is something about the whole idea of this which diminishes the gravity of it all. Besides, if I had to pick a color for having lived with the ramifications of this disease, it would be grey. My life has gone grey. Not even the sharpness of black. A dull, neutral grey. A grey fog of cognitive issues, physical pains and the mystifying world of our broken medical system. I lie in wait to get my life back. That said, even grey is still associating a disease which can imperil your life with a crayon. Somehow, I don't think we're going to get the world to pay attention to how serious this is by being so cutesy.

I have seizures. Sometimes I can't see. Some days my fingers don't work or I can't walk. I am being driven insane by the sounds of the everyday world due to hyperacusis. I don't want people thinking about the cheery lime green color and feeling that you can deal with Lyme Disease by swiping ticks away.

I want people to realize that we need research. Lots of it. I want people to see the admitted opinions - not evidence-based science - of the conflict-ridden IDSA are being used as de facto law in such a way that thousands of people are suffering due to their self-interests. So, can we stop using a crayola color and macro-sized bug to represent this disease. How about a microscopic image or a photo of someone with Lyme Palsy? How about videos of shaking patients or people struggling to walk? Or interviews with folks who can't remember their names or how to get home from next door?

Its not a pretty scene, living with Lyme. Its not a cheery green color. Its not cute. Lets start making that clear, shall we?

Just my little rant for the day. Thanks for indulging.

Action Alert: Protect MA Physicians!

2010-06-10T12:47:00.000-07:00

Please forward to everyone you know! While this action is needed from MA residents, supporters outside the state are urged to contact anyone they may know in MA to encourage their participation. Many thanks!

ACTION ALERT re: MASS. PHYSICIAN PROTECTION LEGISLATION

In Brief (detailed explanation available in next post):

The time has now come to contact Governor Deval Patrick! Language to protect physicians* who treat Lyme disease has been included in an outside section of the FY11 Budget.** Help us make the Governor aware of our (or a friend or family member’s) difficulties in finding appropriate treatment for Lyme disease in Massachusetts and our need for this legislation!

We must ALL urge Governor Patrick to sign the Budget, with this section intact. The IDSA has opposed this legislation at every turn and we fully expect that they will pressure Governor Patrick to veto this section of the Budget Bill. We have already been told that the Legislature will not have enough votes to overturn such a veto. Please send letters, fax, call or email Gov. Patrick (contact info below, including a sample and some tips for your letter) to let him know how important this is to so many of his constituents. Politicians DO take notice when they receive many letters and calls on the same topic – so help us get his attention!

Governor Deval Patrick
Massachusetts State House
Office of the Governor
Room 280 Boston, MA 02133
Phone: 617.725.4005
888.870.7770 (in state)
Fax: 617.727.9725
TTY: 617.727.3666

Or use this link to email Gov. Patrick.
We have also been encouraged to contact the Commissioner of the Department of Public Health, John Auerbach (contact info below), as Governor Patrick is likely to seek his opinion on the matter. If you send a letter or fax to Gov. Patrick, you can just send a copy to Commissioner Auerbach as well. We need Commissioner Auerbach on our side.

Commissioner John Auerbach
Massachusetts Dept. of Public Health
250 Washington Street
Boston, MA 02108
Telephone: (617) 624-6000
TTY/TDD (617) 624-6001

Or use this link to email Commissioner Auerbach.
It would also be helpful to send a copy of your letter to your own State Senator and State Representative (find yours at: http://www.mass.gov/legis/ ), so that they also are aware of the large number of us that want and need this legislation to pass. It is an election year, after all – and they can also urge the Governor to sign.
Trouble emailing or using the online form?
Simply email a copy to lymebill@gmail.com

We will print and submit a hard copy of your letter to both the Governor and Commissioner Auerbach. Again, you can send your letter to: lymebill@gmail.com

TIPS FOR YOUR LETTER TO THE GOVERNOR:
a) Please personalize your letter -- don’t just copy the sample and send it, if at all possible! Form letters are not taken as seriously as a personal letter. However, a form letter MUCH better than nothing, if that’s all you can manage right now.

b) Keep your letter brief and to the point—no more than one page! As much as we’d like them to, they won’t read all the way through our long, very sad and usually infuriating stories.

c) If you are writing about yourself, and particularly if you are writing about a child under 18, please consider the fact that this is not private correspondence. You do not need to mention your child’s name, your doctor’s name, or any specifics about your treatment.

d) Be sure to include your full name and address.

e) Good points to mention:

If you (or a family member or friend) were unable to find a doctor in Massachusetts to diagnose or treat you appropriately for Lyme disease – and especially if any Massachusetts doctor indicated that they couldn’t or wouldn’t diagnose or treat you for Lyme disease because they were afraid of the consequences, or because they needed to follow the IDSA guidelines. Please don’t mention names.
If you went to a physician out of state because of this.
If long-term antibiotics helped you.
If the delay in treatment caused additional health problems.
It’s also good to mention the financial toll this has taken on you and your family overall.
Your desire to be able to choose a treatment which is alternative to those prescribed in the IDSA guidelines.

SAMPLE LETTER TO GOVERNOR:

The Honorable Deval Patrick
Governor of Massachusetts
Massachusetts State House
Room 280
Boston, MA 02133

RE: Outside section of the Conference Committee Report of the FY11 Budget pertaining to long-term treatment of Lyme disease

Dear Governor Patrick:

I want to urge you to sign the FY11 Budget with the section pertaining to long-term treatment of Lyme disease intact. This is extremely important legislation for my family and our state.

(INSERT YOUR SHORT STORY HERE)

This Legislation will allow physicians to clinically diagnose a patient with Lyme disease and will enable very ill MA residents to choose treatment options that best meet their needs, while the medical community works to find better consensus on LD treatment guidelines. Please sign it into law and allow the citizens of Massachusetts a choice in the treatment of Lyme disease.

Sincerely,
Jane Doe
435 Maple Street
Anytown, MA 00022

If you would like a Microsoft Word template for this letter to be emailed to you, send an email to lymebill@gmail.com with the word ‘TEMPLATE’ in the subject field.

My Diagnosis Story

2010-05-21T11:52:00.000-07:00

One of my DailyKos Lyme Disease Awareness cohorts had the wonderful idea to seek out and publish the stories of how DailyKos members were diagnosed with Lyme Disease. Of course, I was to be included. When she asked me, I thought, "Oh that's easy. I must have written that up on my blog. I can just give a copy of that." Only, I hadn't. So, as part of the personal context to my writings here, I will paste what I submitted:

I had been tired alot, but I thought that was to be expected, as a business owner and mother of a young child. However, by the summer of 2005, I knew something was wrong. I had purposefully structured my schedule to make sure I was getting rest for the past 6 months and still, I was profoundly tired. Moreover, I was waking to powerful burning/tingling feelings in my hands and feet and lips. My early thoughts were that I had been poisoned, as I had had similar feelings with MSG poisoning years ago. I was also experiencing cognitive changes. Where I had always been a compulsively organized person, I couldn't keep an organizational system going and my "to-do" list was falling apart. I was forgetting very important things and losing things all the time. Me. The person who had the same pair of sunglasses for 12 years. I think I'd had my keychain for about 20. Those were gone. And my constantly organized house was a mess.
I became very concerned when I started having so much pain in my feet and knees and hips that I couldn't walk. When I woke up one morning unable to see - it was as if I were looking at the world through a wall of rushing water - for a couple of hours, I knew it was time to do something. Not inclined to go to the doctor (hadn't seen one in 15 years), I went to my acupuncturist. After a couple of visits, he gave me a clear directive, "you have Lyme disease. Go to a doctor and get antibiotics." My acupuncturist who loathes antibiotics was telling me to go get them. We'd known each other for about 12 years, so I took him seriously. In August of 2005, I had an appointment at a local clinic. Here's what ensued:
* Tested negative for Lyme in August 2005
* Was sent to a neurologist in Feb 2006, hospitalized, then told it was just stress
* Went to a recommended doctor in Spring '06, who diagnosed me with "chronic heavy metal poisoning"
* after 9 months of chelation, was getting worse - more debilitating pain and weird cognitive episodes of profound confusion doing common activities, getting lost in my own neighborhood, unable to recognize friends
* Spring of '07 was told by PCP that I was a psychiatric case
* Summer of '07, was informed by acupuncturist of 55% inaccuracy of Lyme test
* Aug '07, paid $1,000 out of pocket for more tests, which came back definitively positive for Lyme
* Tried oral antibiotics for 6 months, but couldn't tolerate them.
* Moved to bicillin injections in May '08. Saw some improvement
* Was retroactively denied the bicillin by my insurance company in July '09
In April of 2009 I tested positive for two auto-immune disorders - Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) and Dysautonomia, which explained why I wasn't responding well enough to the antibiotics (tests I would not have gotten if it weren't for ellinorianne and the amazing community of dKos). I needed a much more serious treatment to get my immune system functioning, something called intravenous immunoglobulin (IvIg). IvIg costs anywhere from $4,000 to $17,000 per treatment. I needed to have it 4 times a month for at least 9 months and possibly years. This wasn't going to happen unless insurance covered it. Insurance wouldn't cover it unless I found an in-network neurologist to confirm the diagnosis and issue the orders. Given that the etiology of my diagnoses was Lyme, that proved challenging. Doctors in Massachusetts run screaming from Lyme patients. It is a particularly hostile state to docs who try to treat Lyme patients with anything more than 4 weeks of antibiotics. Though CIDP can be a stand alone diagnosis and the well-established treatment is IvIg, every doctor wanted to see my entire history and couldn't look past the Lyme Disease implications. Finally, I found one who would see me, only she had her own health problems. I was scheduled to see her in September of 09, but that was delayed until February of 2010.
Since then, a change from HMO to PPO has meant that my out-of-network neurologist is now recognized by the insurance company. I have had 4 treatments of IvIg so far. The first real ray of hope in 4.5 years. And, I'm a lucky one.

Been Bitten by a Tick? Prevent Lyme!

2010-05-13T11:33:00.000-07:00

cross-post from DailyKos:

We've discussed how to best avoid tick bites and today we'll discuss what to do if you been bitten by a tick.

How do you know if you've been bitten by tick? The most obvious case is that you've found a tick attached to you or someone you know. It is most often cited that the tick must be attached 36 hours for transmission of Lyme to occur, but it is possible for transmission to occur more rapidly. The first thing you need to do is remove the tick. This has to be done properly, to ensure that you really do remove the entire tick. Luckily, we have Dr. Oz to demonstrate the proper method:

Another possibility is that you see a bite, but the tick is no longer attached. How do you know if it's a tick bite? A few things to look for:

Is it a single bite or a series of bites? With ticks, there is usually just a single bite.

Did you think, "this might be a spider bite?" This is one of the most common mistakes. If you think its a spider bite, reconsider.

Is there a rash? Not a welt - where the skin is raised but not red, a rash where the skin is red. A few things about the Lyme rash from the Columbia Lyme and Tick-Borne Disease Research Center:

This rash is most often circular with a clear edge, but oblong and other shaped rashes may occur as well in response to the tick bite. This rash is known as erythema migrans or EM. This rash usually starts about 3-30 days after the tick bite. Sometimes this rash is mistaken as a "spider bite". It is called "migrans" because it grows in size, gradually expanding over several days to greater than 2 inches across; some rashes can cover very large areas, such as an entire back. If the center of the rash clears, the rash may take on a bull's-eye appearance. The rash is usually not itchy or painful. Sometimes, other rashes occur in other parts of the body far away from the initial tick bite. This is because the spirochete gets transmitted quite rapidly in the bloodstream after the initial tick bite. Wherever the blood goes, there too will the Borrelia spirochete travel.

There are some strong myths about the rash associated with Lyme, so I'm going to reiterate a few of the points made here:

The rash may not be circular

You can get the rash in more than one location, even with one bite

The rash is not itchy or painful.

The rash can appear several days after the initial bite.

One of the biggest myths about Lyme is that you have to have had this rash to have a case of Lyme Disease. If you read further up in the page from Columbia, they say this:

In about 60-70% of cases, a rash may develop at the site of the tick bite.

That is, 30%-40% of patients do NOT get the rash.

So, the rash is a fairly definitive sign, but never think you're out of the woods just because you don't see the rash.

A simple tick bite might look like this:

A bite with a "bull's eye" rash might look like this:

Another type of tick bite rash might look like this:

Sometimes it can even look like a bruise:

You can see, there is a wide variety of tick bite expressions. So, if you've been outside near any tall grasses, wood piles, or trees - it doesn't take much, as the ticks we most commonly acquire are carried by birds and mice and other small animals - and you see a bite which looks like any of these, you should be considering the possibility of a tick.

To be clear: Lyme Disease is now reported in all 50 states. You do not have to be in the countryside to be at risk. I acquired Lyme Disease inside Boston. Mostly likely at a nearby park, but could have been in my backyard. I know children in the neighborhood are getting it without leaving their yard.

Ok. You think its a tick bite. What now?

Go. To. A. Doctor.

Here's where it can get a bit tricky. Doctors are not necessarily well-educated about Lyme. In fact, there is lots of mis-education going on. So, you may have to insist on what you need. Frankly, you may have to go in armed with information (pdf) and you will need to have formed your own opinion about what to do. Why? Because the range of advice you can get from a doctors office is from: "don't worry about it" to "don't do anything unless we get a positive ELISA test result" to "take 1 dose of doxycycline and you'll be fine" to "its best to take a prophylactic course of 30 days of antibiotics and to continue testing."

### Opinion Alert ###
Here's where we move from me simply sharing info to me citing my own opinions based on my own experiences. Please read this with that in mind and the understanding that I am not a doctor and have never played one on television. I did play doctor as a child, but I'm sure that doesn't give me any credentials, either. ;-) I simply have had to face all of this for a long time and have become as well-educated as I can.

How do you decide what's right for you? I don't know. I can tell you how I came to my conclusions and, perhaps, others will tell you why they have their opinion on the matter. I have a long post on my BostonLyme blog about this, which I'll just summarize here with few links for your perusal:
First and foremost, in my mind, is that you need to do everything you can to avoid the very devastating possibility of acquiring "late disseminated" or "neurologic" Lyme. Just read the description, noting that "this can occur in a matter of days":

If not caught early, the infection may then spread to many other parts of the body. This can occur over a period of days, affecting the central nervous system (brain), the peripheral nervous system (nerves), the cardiovascular system (causing pericarditis and/or 2nd or 3rd degree heart block and possible death if not treated immediately), the liver (causing mild hepatitis), the eyes (causing conjunctivitis). and the muscles and joints (causing migrating swelling, tenderness, and/or pain). The typical constellation of symptoms associated with disseminated Lyme disease may include severe fatigue with a need for naps during the day, low grade fevers, muscle and joint pains, sleep disturbance, irritability, headaches, light or sound sensitivity, sharp stabbing or shooting pains, and/or numbness and tingling.

For me, the risks of Lyme far outweigh the risks of 4 weeks of antibiotics.
Because this thing can disseminate so quickly, it doesn't make sense to me to wait for test results. Here, I'll quote from my blog about the problem with waiting for tests:

The initial screening test for Lyme, used quite universally, is called the ELISA. The ELISA is known to be inaccurate up to 55% of the time.(1) That is, it only correctly determines whether Lyme antibodies are present 45% of the time. At least 35% of the patients told that they do not have Lyme Disease because their ELISA test came back negative, actually do have Lyme Disease. This is called a false negative. That is to say, that the ELISA will miss over 1/3 of the cases.
Additionally, our bodies do not produce enough antibodies to register on an ELISA screen for up to eight weeks after the onset of infection. So, to be sure that you have the best chance of an accurate test you must wait 8 weeks.

Do you want to rely on a test which is 55% inaccurate? Do you want to wait 8 weeks, given how quickly this disease can spread to something much more difficult to treat?

There is a lot more to say on the topics of testing, mis-education and the challenges for patients when they have to determine for themselves who to trust on such an technical matter. Lyme Disease is a complex topic in and of itself because there are different strains. It is further complicated by the prevalence of co-infections. Those docs that point to research citing that Lyme is cured in 4 weeks, are pointing to very flawed studies that do not include patients with delayed diagnosis or co-infections, for instance. The studies don't do long-term follow-up of the patients. Nor do they look at multiple medicines or the more than 100 strains of borrelia. The picture of what research has and hasn't been done gets muddied by the fact that medicine is a for-profit industry.

I wish it were more straightforward. For me, the bottom line is that acquiring Lyme is not worth any risk. Whenever I know of anyone who has been bitten I arm them with information and tell them this:

Demand 4 weeks of antibiotics as a prophylactic

Demand that you get both the ELISA and the Western Blot test

Demand detailed results of the tests, not just the lab's overall assessment

If you are still symptomatic after 4 weeks of antibiotics, demand more treatment.

If your doctor doesn't respect your input, find one that will.

Here are some links I offer up for more information:
International Lyme and Associated Diseases Society
California Lyme Disease Association
Lyme Neuroborreliosis Research Program
"Learn the Truth About Lyme"
PDF of letter challenging common prophylactic recommendations
Volkman Letter about evidence of persistence, unreliability of testing, blocking of good research and much more... (pdf)

(1) Bakken LL, Callister SM, Wand PJ, Schell RF. Interlaboratory comparison of test results for detection of Lyme disease by 516 participants in the Wisconsin State laboratory of hygiene/College of American Pathologists proficiency testing program. J Clin Microbiol 1997; 35: 537-543.

#IDSAFail

2010-05-06T10:26:00.000-07:00

That's a "hashtag" on Twitter now. I don't know if it was used before, but I saw it fly into action last week after the IDSA (Infectious Disease Society of America) made this announcement:

After nearly two years, a special independent Review Panel has agreed that no changes need be made to IDSA’s 2006 Lyme disease guidelines at this time.

I'm slow getting to this due to momentous things happening for me, right now, however I can't let it pass.

I'd like to say I was shocked, but I wasn't.

I wasn't shocked because, from the beginning of their antitrust settlement (link to PDF of the agreement is near the bottom of the page) with the CT Attorney General, they made it clear that they weren't taking the need to reconsider their position seriously. Though the Attorney General said this:

This agreement vindicates my investigation -- finding undisclosed financial interests and forcing a reassessment of IDSA guidelines," Blumenthal said. "My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists. The IDSA's guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science.

the President of the IDSA said this:

IDSA's signing the agreement was not, as he alleges, an admission of guilt, but an effort to end a fruitless investigation that was costing our organization (and presumably Connecticut taxpayers) thousands of dollars.

Denial, denial, denial. All this denial of conflict when we know that some members worked with the CDC to develop a Lyme vaccine and we know that some had consulting contracts with the insurance industry. Both of these areas of work have a significant influence of whether patients can get testing treatment. Yet, they were allowed to police themselves.

In light of that, let's look at the recent announcement more closely. The sentence above is their home page summary of the fuller announcement. It's one sentence, with so much packed into it. Let's start with the depiction of the review panel as "independent".

How "independent" was that panel? When the IDSA announced their selections for the panel - oh, wait... They got to select who would be on the panel to review themselves? Is that "independent"? When I'm accused of a crime, may I pick my jury members, please?

But I digress. When they made the announcement, they gave the professional background of the person they appointed as Chair:

She is a past president of the National Foundation for Infectious Diseases (NFID) and IDSA.

Past president of IDSA? Doesn't that constitute a conflict of interest? Somehow, I don't see someone, whose own professional background could be tainted by a negative finding, as independent. Even if she was not on the Lyme Guidelines Panel, the reputation of the entire IDSA, and certainly any officer, is at stake here. After all, if the guideline process was as flawed as the AG says it was, how did the IDSA allow a panel with conflicts of interest and a bullying approach to scientific review to exist? If they didn't self-police the ethics of that panel, how many of their other panels have similar issues? There is an institutional need to vindicate the Lyme Guidelines Panel, isn't there?

It boggles the mind. Why didn't the antitrust settlement state that the members of the panel had to be free of past associations with the IDSA? At least at an officer level or having held any prominent position?

I don't see this panel as independent. They were selected by and paid for by the IDSA and chaired by a past president of the IDSA.

Onto the other assertion in that announcement: Did this panel recommend no changes? Actually, if you read through the report, they did recommend some changes. As the announcement states, they didn't direct the IDSA to make the changes "at this time" but said they should make for the next release of guidelines in 2012. Since these recommendations directly impact whether a patient can get testing or treatment, it seems negligent to wait. I'll give one example of what I mean.

Perhaps, the lengthiest discussion section in the review panel's report had to do with one piece of the Executive Summary of the Guidelines:

Clinical findings are sufficient for the diagnosis of erythema migrans, but clinical findings alone are not sufficient for diagnosis of extracutaneous manifestations of Lyme disease or for diagnosis of HGA or babesiosis. Diagnostic testing performed in laboratories with excellent quality-control procedures is required for confirmation of extracutaneous Lyme disease, HGA, and babesiosis

By "extracutaneous", they mean a case of Lyme where the patient did not present the erythema migrans rash.

There is a lot of back and forth in the discussion. I'll point out one bit:

On the other hand, the Panel felt that in clinical practice, the presence of certain classic complications of Lyme disease such as aseptic meningitis, AV nodal block, inflammatory arthritis, and cranial or peripheral neuropathies, in a patient with epidemiologic risk of Lyme disease and in whom alternative diagnoses have been excluded or are unlikely, may be sufficiently convincing as to constitute an exception to the statement in the Executive Summary.

In other words, there are cases where clinical judgment is appropriate for diagnosing an extracutaneous manifestation of Lyme.

If that's true, shouldn't that be updated immediately?! I have a case of Lyme where I am unaware of ever having a rash. It took me years to get anyone to run tests other than the ELISA, which is known to miss up to half the cases of Borrelia, due to a lack of sensitivity. I'm "lucky" because, once I did pay for more testing (out of pocket, because insurance wouldn't cover it due to these IDSA guidelines) my test results came back definitively positive. They continue to do so. And I continue to be negative for anything else. But because of the required 2-tiered testing system laid out by these guidelines, I was two years delayed getting a diagnosis.

That's two years while I'm having trouble walking, getting lost in my own house, having seizures, unable to bear light and sound, losing feeling in my fingers and feet and so much more. I have verified peripheral neuropathies. So, my case fits the type they are discussing here. How can they make anyone else suffer like that when they know that the guidelines are wrong? Why wait 2 years? I simply don't get it.

If the guidelines acknowledged this possibility, when my peripheral neuropathies were confirmed, y doctor could have, based on the fact the I lived in New England and walked two dogs in the woods all the time, have made a clinical diagnosis without fear of the insurance companies reporting her and the state board threatening her license. Instead, she was trained that patients like me are crazy. And that's what she told me. I fired her that day and found a new doctor. One who recognized that something was wrong. She still felt constrained by the system, but she supported me seeking out an avenue to get to the bottom of it. I was "lucky".

Patients like my shouldn't have to get lucky to get treatment. This review panel knows it. So, why aren't those guidelines changes immediately? Who is it serving to wait.

I could go on about things that have a suspicious nature in this review process. They were supposed to have 9 members to avoid a tie and the IDSA didn't make a timely announcement when one member left the panel. One of the votes ended in a tie.

All of the other votes are unanimous. Its a hotly contested subject. There are no definitive studies to back the IDSA's opinions, which is what these guidelines are: the opinions of those on the panel. They turn to two small and very limited studies about long-term antibiotics, where the patients were all diagnosed in early stage and didn't have co-infections, and base all their opinions on that. The review panel admits there are clinical observations that need fuller studies to be confirmed and the studies haven't been done. So, how is it that all the votes are unanimous? As Dr. Stephen Phillips noted:

...he's never seen a scientific panel reach a unanimous finding, which, he said, raises the question of whether the panel was interested in science, or "simply the rubber-stamping on an intransigent ideology.

The investigation by the Attorney General was never about him or his office having an opinion on the science. It was about the ethics of the guidelines panel. He reported that their process was clouded with ethical improprieties that effect the business system for researching, testing for and treating Lyme Disease. Seems to me, if you want to get rid of that shadow from that cloud, you need to have impeccable ethics in your process of exonerating yourself. Such is not the case here. There are far too many places in which sunshine was not allowed to penetrate the cloud, leaving us all in the dark and rendering everything they say and do suspect.

I'm not a doctor or a scientist or a lawyer, but when something smells fishy, the fish is already rotten.

Hence the prevalence of the #IDSAfail hashtag in the Lyme-related Twitter stream.

Double Duty

2010-05-05T05:54:00.000-07:00

As May is Tick-Born Disease Awareness Month, I find myself with double writing duty. I'm a member of a small team at DailyKos (a web site for progressive democratic political activism with over 200,000 subscribers and millions of page views) who keep the community there apprised of the issues surrounding Lyme Disease. We post sporadically throughout the year, but May is more intensive.

Thus, I may be cross-posting and putting what I write for DailyKos here. I simply don't think I can keep up with two sets of writing. There will be posts here that are not on DailyKos, though. So, stay tuned.

Thank you for your understanding.

May is Lyme Disease Awareness Month

2010-05-05T05:46:00.000-07:00

I prefer to think of it as Tick-Borne Disease Awareness Month. I know. It's a mouthful. But, the truth is, all too often, those generous little ticks like to share more than one microscopic critter with us. When we think about Lyme, we also need to be thinking about Babesia, Bartonella, Erlichiosis, Rikketsia and others. You can see a full list here.

Here's a fun little chart:


Click on the chart to see a fancier version, with pictures for identifying the ticks.

There you have it. Many of us get two or more of these. This is why I'd like to change the name "Tick-Borne Disease Awareness Month."

Tech-i-nical Difficulties

2010-04-26T17:03:00.000-07:00

Please forgive me being so slow to follow up. The short of it is this: while there is an experience to relate, the treatment went well enough that it was deemed I could continue. However, since then I have felt as though a truck ran me over.

I had two small social things to host this weekend and it was all I could do to appear functional and tolerate the stimulation. Sunday morning I lay in bed for hours unable to move. The full body pain was intense, as if everything had simply seized up into one giant cramp.

A little better today.

Will write more soon.

Thank you for your patience.

Treatment: Day 1 pt 1

2010-04-24T20:29:00.000-07:00

I thought I might be able to "live-blog" yesterday, but it didn't work out that way. With all the time in the car (3 hrs each way), I needed to know how to post from my phone and I hadn't looked into that. As it turned out, I wasn't able to do much while sitting for the 4 hours of the infusion, either. So, I offer this report after a good night's sleep:

It was a fairly uneventful 3+ hour drive down. We did run into some traffic on The Turnpike and had to call to let the clinic know we would be late. No big deal. As is usual for me, these days, I was disoriented most of the time. Before we even got to the highway, I was asking, "Where are we?!" After 5 years, this is still disturbing to me. I used to be so good at navigation. Just one more reason to appreciate my iPhone. (a recent acquisition, so I'm still in the honeymoon phase with it.)

I had been told that I needed to be well-hydrated with electrolytes, so we had a couple of big bottles of Recharge on hand and a bag of sea-salted chips. I was also told that I could eat during the transfusion, so we stopped and picked up lunch at Rein's Deli, our favorite stop anytime we're heading south on I-84. As a ex-New Yorker, I miss the delis in Manhattan and Reins offers me a moment of 'saudade'. (wow. what *isn't* on the internet any more?! I can give a link to explain 'saudade', that's awesome.) While I'll often indulge in a Reuben, yesterday I got an egg salad sandwich. Yum.

I wasn't in the mood to talk much. Early mornings are really difficult for me and getting in the car with the roaring of the tires, all the sounds of traffic, the morning sun burning my eyes, etc leaves me very unsociable. Add to that the anticipation and anxieties of heading to a first intravenous treatment and I was downright curmudgeonly with not the slightest amount of grace about getting the worst cup of tea. Ever. (ya know, tea won't steep if you put the cream in right way?! and it really won't be palatable if its only lukewarm to begin with. ugh. sigh. Yes, I still adore Rein's but they need a tea education.) I buried my self in a fantasy book. (I'm not sure how I feel about starting a story with at least 13 volumes. Will I feel unsatisfied with such a long term of incompletion? Or will I enjoy having this world to be absorbed in? Sometimes, I actually grieve a little when I finish a book or a series, having loved the experience and the characters I'd been drawn into.)

We arrived at about 11:20 for an 11:00 appointment and were told it would be another 15 minutes. I love my doctor and I admire that everyone working there seems to be in good spirits and enjoying their work. I can't stand the new offices, particularly the waiting room. Buzzing green fluorescent lights, tight space with video arcade machine and wide screen TV, a door that slams shut when not closed with care and the receptionist window which slides on ball bearings to make a sound which feels like your brain is being ripped open with a zipper pull. I have to manage the growing rage that comes with the ongoing sensory onslaught. You'd think a neurologist would have more sensitivity to this. I do realize that as a doctor who has opted out of the insurance game and is doing all he can to treat patients in desperate need, that he likely can't afford opulent office space and is keeping his overhead costs down. That's the rational part of me, appreciating his devotion and sense of mission. My lizard brain doesn't process it that way.

I brought knitting, but couldn't really focus on what needed to be done next because it required some thinking and planning, so I just wove in ends. There were plenty of ends to weave in and that's a tedious task, so this was a good use of that time.

"That time" was considerably more than 15 minutes. I was finally called back into the infusion room at about 12:30.

Things were lively, nearly hectic, in the infusion suite. Two people were already in the room filled with reclining chairs. Each with their own satellite tower holding their personal container of fluid, connected to them via long, supple tubing. Another woman was getting a 'midline' installed and receiving her operating instructions and being oriented about what to expect when the nurse comes to her house once a week. She was cheerful, but clearly a bit anxious and seemed overwhelmed. I'd be overwhelmed, too. They handed her a box that was about 30" cubed full of supplies which have to be refrigerated. If I had to put all that in my fridge, there'd be no room for food. We joked about the infusion diet, but you could tell hers was nervous laughter.

I waited for the nurse to finish up with her and to prepare my setup. I was informed that it was standard practice to give the patient Tylenol and Benadryl before an immunoglobulin infusion. There was concern that my system is very sensitive. The two nurses talked to each other about what to do and then one of them went to talk to the doctor. It was decided that I would have Claritin, instead of Benadryl. I've never taken either, as I don't recall ever using an antihistamine, so I have no idea why Claritin would be better than Benadryl. I simply complied and swallowed.

At Least They Published This

2010-04-24T08:41:00.000-07:00

Before I continue critiquing news articles that fraught with journalistic fail, I'd like to acknowledge that after printing one of these articles, the Star Tribune in Minneapolis/St. Paul did, at least, print this follow-up opinion piece:

Elizabeth Maloney: We've much to learn about Lyme disease

Given that Dr. Maloney opens with a rather scathing criticism of the paper itself, I give kudos to them for having the forthrightness to publish it:

The April 12 article about the resolution passed by the Minnesota Board of Medical Practice ("Activists and doctors divided over Lyme disease treatment") brought many questions to mind, including: "When did the Star Tribune morph into Fox News?" The article used buzzwords and themes known to inflame physicians, and it misled readers regarding the professional credentials and capabilities of physicians who recognize that persistent/chronic Lyme exists.

One of my main criticisms of the journalism surrounding Lyme Disease is exactly what she points out here: all too often, proponents of the Infectious Disease Society of America (IDSA) and their "guidelines" are presented as the only ones who have professional credentials and the prestige of a legitimate medical association behind them. Those who recognize the persistence of the disease are presented as "Lymies" who are not professional, or, if they actually quote a doctor, the impression is given that this is a rogue outlier and they are not linked to the larger association of medical professionals who recognize this truth: the International Lyme and Associated Diseases Society. Any reader who is not already educated on the subject is likely to discount the word of a "Lymie", don't you think?

I'm not sure why the Star Tribune has taken a step in the right direction by publishing Dr. Maloney's piece. I would like to think that their own sense of integrity was intact. Perhaps, it is. Perhaps, they got enough letters and comments from people after their April 12th piece that they felt compelled to publish it. If they really wanted to do the right thing, though, they'd do a more well-researched, in depth news piece that gives the public a more serious look at the issue.

We're talking about a topic that effects the lives of tens of thousands, perhaps hundreds of thousands, or people. If the news industry is really interested in doing the public a service, perhaps they could begin by focusing on one question: how is it that after the IDSA has been shown to have had major conflicts of interest - that is, ethical issues - it was allowed to essentially police itself, hire a past president of the IDSA to chair the policing, and then violate the terms of the antitrust settlement which set the rules for the policing? When do we stop seeing them as a credible source of information and strip away their rights to authority? When do we start talking about them as the "Lyme Deniers"? How blatant does someone's lack of integrity have to be?

It doesn't take much digging to see what's gone on behind the scenes regarding Lyme Disease. There are books on the subject. One by an acclaimed science journalist: "Cure Unknown". Others laying out the history, too, such as "Beating Lyme".

So, I applaud the Star Tribune for publishing Dr. Maloney's opinion piece. Still, it doesn't carry the same weight as a news piece. It doesn't begin to help the public see that we have one more case in this country of anointing someone one or some group with authority, which has been abused. That it is up to us, to stand up to that abuse and to stop allowing folks with serious integrity issues to rule the day.

Can't Focus. Tomorrow is Big.

2010-04-22T17:06:00.000-07:00

I had planned to post a review of a piece that the Minnesota Public Radio posted on its site yesterday. I've begun the draft, but I can't focus.

Then the IDSA announced that their review committee (that one where those folks who are accused of ethics violations get to oversee the review of themselves and then violate the antitrust agreement which outlined the voting procedure of the review. You know, that one.) has voted to make zero changes to their guidelines. That warrants a significant response. But, I can't focus.

Tomorrow I start my Intravenous Immunoglobulin (IvIg) treatment.

That seems like a simple statement, right?

Yet, there is so much packed in there. I first went to a doctor because I was feeling "poisoned" all the time in 2005.

I have a plethora of emotions and myriad questions. I'm ecstatic and anxious and hopeful and cynical. Will I tolerate it? Will it work? How long will it take? What will it be like to be well again? Will my daughter like who I am when I'm healthy? What will I pursue to earn a living when I regain my health? What if it doesn't work? How depressed will I get?

Can I knit for the 4 hours the Iv line is in my arm? Can I walk around? Can I eat? Will it be cold? Or hot? Will it wear me out or energize me? Will my symptoms get worse before they get better?

Will I be able to perform on the violin?

Okay. Old joke.

So, what does any erstwhile compulsive personality do when she's feeling so overwhelmed? She organizes her sock and underwear drawers. Oh yeah.

I think I've done other stuff today. Not sure, though. I'm nursing a big headache and nausea over sounds or making an effort to think or trying to have a conversation. Very strong burning all over my skin. Worst on my ankles and lower legs. Non-stop yawning. Walking the dog nor caffeinated tea helped.

So, I think I'm checking out for the eve.

Hmmm. Maybe I'll liveblog my treatment.....

Journalistic Fail: Look Through the Keyhole!

2010-04-20T12:13:00.000-07:00

Today, the Washington Post has a piece about Lyme Disease in their health section: "Ticked Off Lymies Challenge Experts", by Maura Lerner

Synopsis:
A woman who was treated with a short course of antibiotics for Lyme Disease, was devastated three months later when her entire body went numb and she was diagnosed with MS. She learned about the possibility of treating her condition as Lyme Disease, did a 14 month course of antibiotics and recovered her health.

An infectious disease specialist from the Infectious Disease Society's (IDSA) Lyme Disease Panel in 2006, says that politicians are practicing medicine by passing legislation related to Lyme. He says this woman's treatment "makes no sense" and that the long-term use of antibiotics is dangerous, as there is no evidence it works.

A second doctor, a family practitioner, says the antibiotic question is not proven one way or another and you have to do something for people who are still suffering after a short-term treatment.

A third doctor, another infectious disease specialist, says that many of these people who claim to have Lyme don't have it.

Finally, the patient in the story says she doesn't care about their medical debates, she knows she had Lyme and she knows the treatment worked for her.

Review:
Quoting members of the IDSA:
I'm glad to see that Ms. Lerner at least mentioned the anti-trust investigation against the IDSA's 2006 panel. It is a vast improvement over quoting them as the experts without mentioning this at all.
Still, it falls short of clarifying why this investigation is so important. Also, I wish she would do more and get the particulars on the conflicts of interest. For instance, did Dr. Bakken have any conflicts of interest? (Almost every one of them on the panel at the time did.) It profoundly impacts whether you deem his opinions credible.

Why was the IDSA panel investigated?:
The investigation of the IDSA wasn't solely about conflicts of interest. The key reason for the investigation and resulting antitrust settlement was this:

The IDSA's guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science.

If you're writing a journalistic piece and quoting someone from a panel which has been investigated by an Attorney General, aren't you obligated to speak to the AG about said investigation? To understand why he pursued it and what he found? It's not an every day occurrence, a medical panel being investigated this way and being forced into a settlement agreement. In fact, it is unprecedented.

Isn't it your job, then, to explain to your readers why this is so important? Your readers need to understand how conflicts of interest and suppression of evidence impact people's lives. We're not talking about whether a new color of M&M's is a stolen formula from Skittles. People are losing their abilities to function. They are sick and dying.

These guidelines issued from these medical panels are used by the CDC, the insurance industry and doctors to determine if someone has a particular disease and how to treat it. If the process for creating those guidelines is corrupted it has a profound impact. Patients deserve better. They have the right to the best possible understanding of their disease and how to treat it, regardless of who might make money or who is protecting their reputation.

There is more than one Lyme-related medical society:
Ms. Lerner gave the weight of an entire medical society to the opinion held by Dr. Bakken. She then treated Dr. Malloy's opinion as that of a single practitioner. If Dr. Malloy were alone in her view, some rogue doctor, well that would be appropriate. However, this is not the case. In fact, there is another medical society who views the evidence about Lyme Disease quite differently from the IDSA. They are called the International Lyme and Associated Diseases Society (ILADS). Proper journalism would require that you check out whether the IDSA is the only organization that investigates the science and renders an opinion about this disease.

Where are the references to ILADS, Ms. Lerner? Why is the conflicting opinion presented as such an outlier?

Unchecked accusations:
When doctors accuse politicians of "practicing medicine", aren't you obligated to investigate whether politicians are? Why do you let that accusation stand?

The AG's report on his investigation makes it clear that he is not "practicing medicine". Rather, he is shining a light on the investigative process of a panel which wields a lot of power in the world of medicine. You don't have to be a doctor or a scientist to assess an investigative process.

Legislators are not practicing medicine, either. They are protecting doctors and patients who are being victimized because of a corrupt process that generated "guidelines" which are being used as law. In fact, doctors and insurance companies could be accused of practicing law. Legislators are taking back the power to practice law.

What do I mean? Well, doctors who subscribe to the IDSA rule of law will file charges against other doctors who are trying to treat patients with Lyme Disease. The sole justification for these charges is that the treating doctor is not following IDSA guidelines. But, if they are "guidelines" and not "law" then why isn't a licensed doctor allowed to treat his patient as he sees fit? Let's be clear, it is not the patients filing these charges. In many of the cases, the patient got better under the accused doctor's care. It is insurance companies (because they love any justification for denying care) and other doctors. They are testifying against doctors at state medical board hearings. That's a legal venue. So, they are stepping out of their role as medical practitioners and into a role as some kind of anointed deputy.

What legislators are doing is looking at the process, wherein the IDSA panel suppressed evidence, and saying, "You can't then use the results of that process to legally punish doctors and deny patients treatment." They are not dictating how a doctor must practice medicine. They are dictating how the law is being applied to doctors. That is their jurisdiction.

Don't leave accusations unchecked, Ms. Lerner.

"Makes No Sense" and "Probably don't have Lyme"
These are not quotes based on facts. They are steeped in opinion. How about challenging those opinions? If Ms. Backes was diagnosed and treated for Lyme. When she later became ill, there was no other diagnosis but MS. However, ILADS, the Lyme and Tick-borne Disease Research Center at Columbia, the American Journal of NeuroRadiology, the National Center for Biotechnology and many more, recognize that Neuroborreliosis (Neurologic Lyme) can look like MS. So, why does it "make no sense" that this woman would have been told she had MS and then, in an attempt to see if she actually had something treatable - since she did have a history of Lyme Disease - was cured with a treatment for Neurologic Lyme? And, how do you explain her recovery from supposed MS? It sounds like a throw away opinion given by someone who doesn't want to face that his view on the subject might be incorrect. Shouldn't he be questioned on that?

Then we have another infectious disease doctor who proclaims that "many of these patients probably never had Lyme disease at all". Wow. Now he's diagnosing patients he's never seen. According to the CDC, Lyme Disease is a clinical diagnosis.

Lyme disease is diagnosed based on symptoms, objective physical findings (such as erythema migrans, facial palsy, or arthritis), and a history of possible exposure to infected ticks. Validated laboratory tests can be very helpful but are not generally recommended when a patient has erythema migrans. For detailed recommendations on serologic testing, click here.
When making a diagnosis of Lyme disease, health care providers should consider other diseases that may cause similar illness. Not all patients with Lyme disease will develop the characteristic bulls-eye rash, and many may not recall a tick bite. Laboratory testing is not recommended for persons who do not have symptoms of Lyme disease.

How is this doctor allowed to make such a spurious claim about thousands of patients whom other doctors have seen and he has not? Just because it doesn't suit his worldview about Lyme Disease? Why do we even report such an unsubstantiated claim?

Did you ask him about all the patients who have never tested positive for anything else, but have tested positive for Lyme? Why are they denied treatment if they continue to have symptoms after the short course of antibiotics? There is no scientific proof that a) a short course of antibiotics definitively cures a human patient of Lyme Disease and b) that persistence of the disease is not possible. So, when a patient is found to have Lyme Disease and isn't cured with the proscribed treatment, why do you assume that it must not be Lyme? That simply defies logic.

And what about the myriad cases of ALS and MS that have miraculously been reversed with long-term antibiotic treatment? Or the prevalence of co-infections?

In this short piece of journalism, Ms. Lerner has actually done more justice to the doctors and patients fighting Lyme Disease than many other journalists have done. Still, it falls far short of informing the public about what is really going on. It doesn't begin to get out the way money and ego trump the needs of patients. How vulnerable people, disabled by a horrible disease have to muster the wherewithal to fight tooth and nail for a chance to regain their health.

The keyhole into this mysterious world is the investigation done by Attorney General Blumenthal. Journalists need to look through that keyhole and bust open the door.

Mission: Lyme Journalism

2010-04-20T11:08:00.000-07:00

I hereby declare a very specific sub-mission regarding Lyme Disease Awareness:

I will push back against journalistic weaknesses in every article I read about this disease. It will be an ongoing series on this blog. Want to help me name the series? Post in the comments.

I get weary reading these stories where there is no digging, at all. As a layperson, I can find more information shining a light on the background of these issues than a journalist?

I don't think so. I think that journalism is in decline as the industry is taken over by corporations which are not dedicated to the mission of the 4th Estate. Profits are more important than speaking truth to power. In a world where people are consuming information at a rapid pace, 24 hrs a day, news corporations are more interested in pumping out product than providing meaningful content. They don't have the patience it takes to dig into a story deeply, so they print whatever they can get in the fasted time possible.

At least that's how it looks.

Well, I can do my one little part. I know a bit about what's going in the realm of Lyme Disease. And I have a strong sense of logic and discernment. So, when news outlets publish something related to Lyme, I can practically smell the weaknesses.

I'll sniff out what I can and report what I find here. I hope you find it useful.

Journalistic Fail: "It Just Doesn't Resonate"

2010-04-16T06:08:00.000-07:00

Local television station WBZ has posted a story about Lyme Disease on their web site. In the piece there are two patients cited who a) had difficulty getting a diagnosis when they were sick, and b) got better when they were finally put on long-term antibiotics. One of those patients had been paralyzed and the other had been told she had a year to live. After finally getting diagnosed with Lyme and being given long-term antibiotic treatment, both improved. Neither has died.

The piece is entitled "Doctors Divided on Treatment of Lyme Disease". The author, Joe Shortsleeve, after giving the history of these two cases, goes on to tell us that getting treatment is difficult. Both patients, though they had health insurance, had to go out of state and pay out of pocket for their treatment. He explains that this is because the Infectious Disease Society of America (IDSA), is against this treatment. He then quotes two different doctors and their opinions on the subject.

Ok.
Rant #1:

What Joe Shortsleeve fails to mention is that the IDSA wields an enormous amount of power in the medical world. That they are the law of the land when it comes to guidelines defining the disease, how it will be tested and accepted treatment protocols. He also fails to inform the audience that the IDSA had to agree to an antitrust settlement with the CT State Attorney General because:

"This agreement vindicates my investigation -- finding undisclosed financial interests and forcing a reassessment of IDSA guidelines," Blumenthal said. "My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists. The IDSA's guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science.

He further failed, to report that the IDSA violated this antitrust agreement by purposefully manipulating and avoiding transparency in the review process.

This irks me. It is shoddy journalism to do a report like this where you do not question the credibility of an organization with power. They have been investigated by an attorney general and they have violated the antitrust settlement agreement that resulted from that investigation. Why do they continue to be referenced without pointing this out?

And what about looking into other medical associations? It is not simply individual doctors who disagree with the IDSA on this subject.

Rant #2

What does the doctor who supports the IDSA approach to denying treatment to sick patients have to say to defend this position,

"The concept that Lyme disease germs can be lurking in one's body open endedly… just hasn't been resonating," said Dr. Mark Pasternack

Seriously? You're talking about people's lives in the balance and you support denying them treatment because "it just hasn't been resonating"? Wow, there's a powerful scientific argument.

Where is the journalistic ethic that asks, "and do you have science that proves that the germs can't lurk?" I mean, look at those two cases up above. You're talking about denying treatment to a woman who was paralyzed and another who was given a death sentence. The reporter thought it was satisfactory to leave it at "just hasn't been resonating?"

Rant #3
The report does, then, mention what the IDSA claims is a concrete reason for denying treatment: Long-term antibiotic use comes with risks.

You may be completely debilitated but we don't think you should have long-term antibiotics because there is risk.

Where is that dogged journalistic nature that asks, "Are these risks any greater than the risks taken to treat other diseases?" or "Do we use long-term antibiotic treatment for any other diseases?"

This irks me to no end. The public needs to understand that thousands of patients across the United States are living disabled lives because of the IDSA. An organization who

was shown to be corrupt in an antitrust investigation
was proven to lack integrity when they violated the antitrust settlement that resulted from that antitrust investigation
who have no science to prove their position and use a lame defense of "it just hasn't been resonating"
and
deem that disabled and dying people should not be able to take risks to recover their health, when those same risks are not denied for people with other diseases.

Why do we, in this country, continue to give credibility to people and organizations who have clearly demonstrated that they don't deserve it?

When will get back to expecting quality journalism and quit accepting stenography?

I'll tell you what doesn't resonate: the IDSA as a credible source of information.

OMG! OMG! OMG!

2010-04-14T18:56:00.000-07:00

Dare I believe it?
Can it be true?

Good afternoon, Mrs. N. My name is S @ I am in the insurance department @ AOM (American Outcomes Management). I want to touch base with you regarding your benefits. We are a participating provider with your insurance carrier, Harvard Pilgrim and authorization has been secured for your IVIG home infusion therapy. You have a $500 deductible and that has been met. Your plan will provide reimbursement @ 100%. I am going to forward that information to you in the mail. There are a couple of forms for you to sign and mail back to me. I will also enclose a letter and you are welcome to call me with any questions or concerns and of course you will have my email address. Please let me know if there is anything I can help you with. Thanks

After all this time, it seems almost unreal. A quiet little unassuming email. So matter-of-fact. But there it is. My treatment has been approved!

Am I actually on my way to wellness? Or, at least functionality?

After all these years. One little change in our insurance. Going from an HMO plan to a PPO plan. Then, my neurologist writes one letter of medical necessity and provides it to this in-network service and, voila!, its done. In a matter of weeks. Wow.

I'm stunned. I'm thrilled. I'm afraid to be thrilled. I'm almost paranoid. Will the insurance retroactively deny again? Will I start feeling better and then they come along and pull the plug?

I'm not sure I'll really believe this is finally happening until that IV line is in my vein. But, wow, an approval letter!

Oh my gawd! Oh my gawd! Oh my gawd! Is my nightmare coming to an end?!

Write Your Attorney General!

2010-04-12T10:50:00.000-07:00

Thanks to the Lyme Policy Wonk, I've learned that the IDSA plans on releasing the results of its guidelines review process some time this month. (The IDSA buried the announcement on their web site and has not done anything else to let everyone know that they are forgin ahead.) As far as we know, they have not responded to CT Attorney General Blumenthal's request to re-do their voting, in order to be in compliance with the antitrust settlement agreement the IDSA signed.

To support AG Blumenthal's work to keep the IDSA in compliance, and to raise awareness to all State's Attorney Generals, please write to the Attorney General in your state. Ask your AG to offer public support. Here is the letter I wrote:

Martha Coakley, Attorney General

Dear Ms. Coakley,

I email you today to alert you to an injustice being inflicted upon patients with Lyme disease, not only to those in other States, but to many citizens throughout the Commonwealth of Massachusetts. I believe you are in a position to help rectify this wrong.

In 2008, CT Attorney General Richard Blumenthal announced that the members of the Infectious Disease Society of America (IDSA) were found to have many conflicts of interest which eroded the credibility of their 2006 Lyme Disease Treatment Guidelines. An antitrust settlement agreement was reached which required the IDSA to establish a conflict-free panel for a publicly transparent review of those guidelines.

Now we find that the IDSA is manipulating the voting process to favor no change in the guidelines, in violation of specific procedures laid out in the antitrust agreement. Attorney General Blumenthal has confirmed that the IDSA's review panel voting procedure violates the written agreement. He has written them to request they re-vote to be in compliance.

Patients with Lyme disease in Massachusetts may be negatively affected by these guidelines. IDSA Guidelines can alter insurance coverage and make it difficult or impossible for patients in Massachusetts to receive appropriate treatment

Along with other attorneys' general in states such as New York and Connecticut, I urge you to show your public support for enforcement of the antitrust settlement.

What is happening to Lyme patients via the IDSA's conflicts of interest and the insurance industry's priorities of profits over patients is a prime example of the flaws in our medical system. Patients do not and should not have to understand the science behind their illness and the politics behind their care. They should be able to turn to their licenses doctors with the faith that they can readily obtain the best information available about their condition and feel free to treat them as they see fit. When this is not the case, the only recourse open to patients and their loved ones is to turn to higher authorities to put a check on any abuses of power. We don't ask that you assess the science, we simply ask that you support Attorney General Blumenthal's assessment of the process by which the science is being reviewed.

I hope you will contact CT AG Richard Blumenthal to help keep the IDSA honest and non-biased in their pursuit of Lyme disease guidelines.

Thank you.

Sincerely,

Feel free to copy my letter and edit it to suit your own style. Thank you!

Tough Decisions

2010-04-08T16:37:00.000-07:00

I have a prescription from the neurologist for a Far Infrared Sauna (FIS). Even with a prescription, insurance won't cover the cost, so we'd have to pay for it ourselves. We can use our Flexible Spending Account (FSA) money for it, but it would use up the entire balance of that savings for the year. And next year, the limit on how much salary you put aside for spending on medical expenses not covered by insurance will be cut in half. The FSA money is intended for the entire family, not just for me. Do we use it all just for this?

If so, what do we do if I'm approved for IvIg and the doc says I need to go back on antibiotics at the same time? The IvIg is to recharge the immune system and help rebuild nerves so that you reverse neuropathies. Both of these will be almost meaningless if I still have Borreliosis (Lyme), Bartonella, Babesia and Rikketsia (Rocky Mountain Spotted Fever) ravaging my system. So, it makes sense to attack those during the IvIg treatment and hope for some real healing. However, the insurance company has already stated that I'm cured and won't cover further treatment for Lyme. So, we'd have to pay for that ourselves.

Therefore, I'm thinking that we should hold onto the FSA money.

That said, no one is claiming that any of this is going to cure me. Those Lyme spirochetes are facile at hiding out and re-emerging. More and more in the world of Lyme Disease, we are facing the reality that "cured" may not ever apply. What you can do is treat well enough that you can manage it. One known effective management tool is FIS.

Here are the claims of general health benefits of FIS:

Health benefits
Detoxification: Infrared saunas remove the toxic material of the human body through sweat and urine. This improves the human metabolism.
Improved blood quality: The blood quality improves due to removal of toxins. The average oxygen level of blood improves over the long term.
Skin improvements: The skin is deep-cleansed. Dust and dirt gets removed from deeper inside your skin.
Joint pain removal: The far infrared sauna, being a dry sauna in nature, helps one to get rid of joint pain.
Soft heating effects: The soft heating effect of the FIR sauna provides you a long term benefit on your overall health, including your cardio-vascular system (heart and blood system). As a result you enjoy a longer and healthier life.

Infrared sauna is different from regular saunas. It uses infrared energy as the heat source:

Radiant heat is simply a form of energy that heats objects directly through a process called conversion, without having to heat the air in between. Radiant heat is also called infrared energy (IR). Our sun is the principal source of radiant energy that we enjoy daily (some more so than others).

Have you ever been outside on a partly cloudy spring day of about 50 degrees F. and felt quite comfortable until the sun was suddenly obscured by a cloud? Although the air temperature had not had time to drop, you felt chilled, as the cloud would not let the warming infrared rays through to reach you.

Infrared heat penetrates more deeply into the body and raises core body temperature, which is not accomplished by other heat sources. This better stimulates sweat glands and lymphatic systems and circulation. For Lyme sufferers, the lower temperature of a FIS is key, because we become heat intolerant. While summer used to be my favorite season, I can no longer tolerate the light nor the heat. A regular sauna is torture. The second key benefit for Lyme sufferers is that this deep core heat helps the body to release toxins as it sweats. The Lyme spirochete releases neurotoxins which damage the brain and peripheral nervous system. Detoxifying can be key to winning the battle of nerve damage.

If I am to live with Borrelia Burgdorferi in my body, a far infrared sauna could be key to minimizing symptoms and maximizing functionality. In the long run, its an excellent investment in my health. One could argue its a wise investment in good health in general, but it certainly looks like it could be particularly necessary for me.

So, what's more important? Getting all the antibiotics to go with the IvIg treatment or getting the sauna for long-term symptom management? These are the types of choices I have to make all the time, as we've been nearly bankrupted by this disease and the cartel-like power of our insurance industry. I'll likely wait until I know whether the IvIg approval comes through before hunkering down and facing the decision definitively.

Silence Equals Death?

2010-04-06T14:29:00.000-07:00

Part of the challenge of being a patient with Lyme Disease is that I must navigate the medical/political territory with some care. I can't pretend that my writings here are anonymous. Therefore, I do have to consider that my insurance provider could come across my writings and somehow use them against me.

My bigger concern, however, is for my doctors. At this point, I'm not getting treatment. The insurance company retroactively denied what little treatment I was getting. According to them, I am cured of Lyme. I'm told that Harvard Pilgrim Health Care has a lifetime limit on how much treatment you can receive for Lyme Disease. So, how much worse can it get for me, really? I don't think they can proactively kill me.

They can, however, make big trouble for doctors. Did you know that they can file claims against doctors anonymously? Its a twisted used of confidentiality laws which allow patients or employees to make reports without feeling vulnerable to their doctor or boss. I think we need to clarify those laws and limit who can make claims with anonymity. When a corporation with big pockets can file claims, they can ruin the reputation of or bankrupt a doctor just because they don't want to pay for patient care. Even if the cases have no merit, they cost the doctors so much in legal fees that they can no longer practice medicine. Its called harassment, in my book. Since most medical offices receive the vast majority of their income via their patients' insurance companies, they live in fear of the power these companies have over them.

Even when doctors have no claims that patients have suffered harm under their care, they can be dragged through years of hell in courts. Look at the case of Dr. Jones, the only pediatric doctor in Connecticut who will treat children with persistent Lyme. What is striking about the continuing pursuit by the medical board is that never, in any single complaint, is anyone saying that his patients were not treated well. Indeed, they thrived under his care, most after suffering quite some time under the care, or lack thereof, of other doctors. He is 80 years old and unwilling to shut down his practice because no one else will treat these children. When you read the article, note the punishment handed down to him and what his supposed infractions are compared to other punishments meted out by the state medical board. He is punished for reading test results and consulting over the phone and then prescribing antibiotics - which did help the patients - far more harshly than doctors who are practicing under the influence of mind-altering substances.

I point out this ridiculously unfair system because I must be sensitive to it as I try to share my experience with fighting for my health care. I have recently had appointments with two different doctors. They reach the same conclusions: I continue to test positive for Lyme & I have demylineation of my nerves. I need treatment for both.

How to get me treatment and the experiences of each doctor are vastly different. They are different because they are human beings with different temperaments and personal styles and different current life circumstances. They are also different because one of them is beholden to the insurance companies for an income and the other is not. Another difference: one is in a state with a modicum of protection written into the state laws now and the other is in a state where the same law is being held hostage. Both have been threatened with sanctions from their respective medical boards. For one, this creates a wariness. For the other it does not.

If I were not a patient who was "in the know" about what goes on behind the scenes in the medical world, I would have no idea why I could experience such a range of possibilities. (Of course, the other possibility is a neurologist who denies that I'm sick at all. Who buys into the IDSA claim that all of us who continue to have symptoms after 4 weeks of antibiotics are victims of a psychosomatic syndrome. I fired those doctors.)

This blog is designed to be informative. I'm a layperson, so I can only inform about the medical particulars in a layperson's way. What I can impart with authority is the patient experience. The painful, frustrating, drawn out experience. The reader can best get a sense of it if I can share details. The devil is in the details, right? The comparison of my last two appointments would be illuminating. It could help other patients know what to look for and what they might be up against, even when working with doctors who want to help you.

However, I'm not sure I can do that. As soon as I discuss details, I risk the anonymity of my doctors. I also risk them taking it the wrong way. They do their work under a lot of duress and I don't want to add to that. That puts my own care at risk. Frankly, I can't afford to raise the risk that I won't get care. The road to treatment is so precarious as it is.

Yet, I have long understood the slogan 'Silence Equals Death.' Abusers and oppressors count on it. Our own self-preservation can be dependent on the very ones who abuse and oppress us. The brave souls who risk everything by speaking out at their own peril trigger the beginning of the end of abuse. My concern is more complicated, because it is not simply myself I put at risk. Yet, I'm not sure that, even if it were just me, I would take the risk right now. I need to get treatment. I have two possible paths for getting it. Each has pitfalls. Each could fail. Both could fail. Yet, one might succeed. I'm not willing to risk that, just yet. I guess I'm not that brave. Perhaps later I can craft a way of telling this part of the story without risking others. I'll work on that.

For now, I'll simply say that the process is frustrating. It's been two and half years since my first diagnosis of Lyme Disease. It took two years to get that diagnosis. I continue to be amazed that everyone can so blithely tell me to be patient. One of the docs informed me that it can take months, once the application is submitted, to get approval from the insurance company for IvIg treatment. I am looking at the earliest possible beginning of treatment in July. That's if all goes well. Nothing has gone well so far.

Later in the week, I'll write about a test that had not been done for me before: the CD57. As with everything else related to Lyme, it is controversial.

Of Lice and Lyme

2010-03-29T10:03:00.000-07:00

One of the symptoms I live with on an ongoing basis is that the entire surface of my skin itches. I have had to work quite hard to stop scratching myself to bleeding. How this manifests on my head is that it always feels as if something is crawling on my scalp. I have a persistent case of The HeebieJeebies.

Recently, there was an outbreak of head lice in my daughter's school. She was one of the unlucky souls who ended up bringing them home. Given her waist length hair and her propensity for hugging, I guess we can't be too surprised.

This was our second round of battling off head lice. My head had never stopped itching from the first round and now I started obsessing about it. I was scratching my head all the time. I did all the treatments we did for her. I was constantly running the professional, metal, nit comb through my hair. As it would emerge from the dense forest on my head with white flecks almost every time, I was convinced that I had a horrible infestation.

If you've ever had to get rid of head lice, you know its a tedious thing. Put oil on the hair for hours, wash it out with special shampoo, put in special conditioner which you leave on for a while before rinsing out. Then the multi-hour inspection for nits. You have to wash all your bedding, clothing towels. You must spray all your upholstered furniture. For 10 days you must be vigilant and you have to repeat the big hair treatment process at the end.

We had barely recovered from our previous engagement with lice and I was now really certain that I had a bad case, so we decided to call in a professional to make sure we did all that we could as quickly as possible.

My daughter invented the title "Professional Lice Expert" (PLE). When our PLE arrived, I told her our history and let her know that after what I was seeing on the nit comb, I was absolutely sure that I was ground zero for apocalypse by lice. I was completely freaked out.

Four hours and $500 later, I learn that I did not have lice at all. I did have dry scalp. So did my daughter. Those white flakes on the nit comb were dead skin. A few oil treatments for my scalp and even that has been addressed. I was so relieved to realize that I was not ground zero.

I still have the HeebieJeebies. My head has that creepy crawly feeling, but I'm really resisting the urge to scratch. Its easier to do that when you have confirmation that nothing is actually there.

Though this is a minor thing compared to all the symptoms I live with, it does demonstrate the challenge of having neuropathies. Our nervous system is supposed to work like the lights on your dashboard: an indicator of some kind of activity. I've lost the ability to know if something is actually happening because my indicator is always lit up.

Funny, they can't figure out why check engine light in my car is always lit up, either!

Dear Mr.'s Stiller and Letterman

2010-03-25T10:47:00.000-07:00

I saw Mr. Stiller's appearance on your show, Mr. Letterman. It's all the buzz in the Lyme community.

Mr. Stiller reported that he had injured his knee in Africa and that it wasn't healing and they couldn't figure out why. After draining fluid, which they were surprised was not blood, they ran some tests and asked him if he'd ever had Lyme Disease.

He said that he had not, but he had been in New England last summer and his son had a bout of Lyme Disease.

You then went on to say, Mr. Stiller, that you would be relieved to have this disease because it was better than having arthroscopic surgery, since Lyme is easy to treat. Mr. Letterman you pointed out that it would be odd for someone in California to get Lyme because its an "East Coast" problem.

Oh boy.

First, I offer a prayer: Mr. Stiller, I sincerely hope that if you have Lyme disease, you are one of the lucky ones and a few weeks of antibiotics clears this up. No one could wish the horrors of a persistent Lyme infection on another human being. (Ok, well, maybe a dark little part of me wishes that some of those IDSA panel members would get it. I'll explain that later. Meanwhile, I'll continue to work on purging that demonic impulse.)

Some of us live with serious ongoing neurological damage. Seizures, palsies, tremors, peripheral neuropathies, debilitating pains, brain fog, cognitive losses, profound fatigue, heart issues, breathing problems, digestive difficulties. The list goes on. This is in addition to the rheumatoid concerns of swollen joints which are so painful we can't use our limbs. Some get it in their spines and are relegated to spending their days in a fetal position unable to move. We lose the ability to speak without slurring, or sometimes, speak at all. Our vision is effected. And may no one on the face of the earth ever have to live with hyperacusis - a growing sensitivity to sound which makes the entire world a heavy metal assault on your sensory system.

While you're recovering, I'd like to suggest that you and Mr. Letterman get a little bit more educated about the realities of Lyme Disease. Mr. Stiller, being a resident of California, you might acquaint yourself with one of the most prominent and active Lyme groups in the country: The California Lyme Disease Association. CALDA is a leading source of information and advocacy on the subject. There are some counties in California with an infection rate as high as that in Connecticut. Every state in the country now has Lyme disease.

Mr. Stiller, your son is so lucky that he was diagnosed and treated in a timely manner. The restrictive guidelines from the IDSA, whom I mentioned above, which are adhered to as intractable law by insurance companies, actually prevents many, many people from being diagnosed at all. Faulty testing and ignoring the clinical signs if there is not a rash present (only about 35% of Lyme patients ever get a rash) are the hallmarks of the undiagnosed patient. Then, if you get diagnosed and you are offered the "Lyme medicine", you'd better pray that the infection is mild enough so that four weeks of antibiotics does the job completely. For a some it will. For many it won't. Whether your symptoms are gone or not, your medicine will be. And you can be much worse off for having begun treatment and having it stopped midstream.

Mr. Letterman, you would never remember me, but you used to dine in my friend's Chinese restaurant in New Canaan, CT regularly. I would show up at closing time to hang with my friends and you would be there eating by yourself. You came at closing so you could eat in peace. I left you in peace and had a great respect for your desire for some normalcy. We did meet once or twice briefly, as a social nicety.

I write you now, as I struggle to get my life back. It has been ravaged by Lyme. Due to unreliable testing, I went for years undiagnosed and the disease got into my brain and nervous system. While I can look normal on a good day, I am far from it. Though I have doctors who confirm that I have a chronic illness and that I have acquired auto-immune disorders, I cannot get treatment. The insurance companies rule the day and what little treatment I was getting was retroactively denied. All based on the work of the the IDSA panel. Your own state Attorney General (now running for Senator) has worked on this topic. He investigated that group for anti-trust issues and found many conflicts of interest and that they had methodically dismissed any data or person which did not support their foregone conclusions about Lyme Disease. Don't be fooled by all the talk about an agreement with the Attorney General for a guidelines review process, either. They breached that agreement and left the whole thing in limbo. Still, their guidelines are used by insurance companies because it suits them to have any reason to deny having to provide services. Those of us who are sick become even more overwhelmed at the system we have to fight as we try to receive care.

I would ask now that you take a moment and look into the realities of Lyme Disease and offer us a little peace by helping spread awareness and correcting the misinformation you innocently disseminated. We struggle enough for affirmation and understanding. This segment on a very popular television show did not help. You could more than offset that with a little bit of effort.

May is Lyme Disease Awareness month. Perhaps you and Mr. Stiller could do a little research and find the time and motivation to create a public service announcement? Or do a segment on the show? We could provide lots of resources and names of knowledgeable people to interview. It would mean so much to so many, we would be eternally grateful.

Thank you for your consideration.

Phew.

2010-03-25T09:01:00.000-07:00

The doctor is back in the office. I have a new appointment for April 5.

Its good to be back on track.

BostonLyme Support Group Redux

2010-03-24T09:09:00.000-07:00

Back in August, I asked if there were folks interested in a Lyme support group based in Boston. There were a couple of responses and then I went into a downward spiral and didn't follow up. Please forgive the delay.

We have a communications challenge, though. If you post a comment here, I can't readily get back to you. Therefore, I have embedded my email address in a reply to the old post.

Interested in a support group? Please go to this reply and email me directly by removing all the spaces in the email address text. I will create an email list and we'll find a time in the next two weeks when we can get together.

In our first gathering we'll talk logistics: when we want to meet, how often and what kind of support we seek.

I look forward to hearing from you.

The Minnesota Solution

2010-03-23T09:48:00.000-07:00

State by state we're seeing legislation introduced to protect doctors who treat patients with Chronic Lyme. California, Connecticut and Rhode Island have already passed laws. Bills have been proposed in many other states.

The medical establishment gets particularly bent out of shape about having an outside force exert any control over them. They circle the wagons and fight hard against any legislation related to medical matters. Regardless of how the individuals on various state medical boards feel about the treatment of Lyme disease they will fight legislation simply for the sake of keeping the law out of what they see as their territory.

There is a longstanding cultural norm of keeping legislation out of the practice of medicine, though there certainly have been exceptions. These laws are not telling doctors how to practice medicine. They are designed to give doctors the freedom to treat as they see fit given that there has been no research to prove the non-existence of Chronic Lyme. Still, there is a strong institutional resistance to these bills.

Last week, the Minnesota state legislature was set to consider just such a bill. Before the public hearing even began, it was announced that the voting on the bill would be "laid over". This is usually a death knell signaling a painful disappointment for those who suffer from Lyme Disease. However, in this case, something very different happened.

Rep. John Ward, chief author of HF 2597, told the committee he had worked out an agreement with the state Board of Medical Practice that would circumvent the need for legislative action.

Rep. Ward was the chief author of the bill. The bill simply prevented the state medical board from taking disciplinary action against a physician for prescribing, administering or dispensing long-term antibiotics for chronic Lyme disease. The bill had already passed in the Senate and was likely to be successful in the House.

He had heard from constituents, Lyme support groups and the medical establishment. He knew that the medical board had their backs up about legislation. So, he used their angst about the upcoming law to get the medical board to work with a doctor from the Minnesota Lyme Action Support Group (MLASG) to draft a new board policy.

He made one thing very clear:

“But the ‘stick’ of the Legislature so to speak is still over the (medical practice) board. The House bill will be resurrected if a policy can’t be worked out. It will pass and go to the floor of the Capitol.”

They went ahead with the hearing so that it is on public record.

Minnesotan's were lucky. They have a local doctor, Maloney, who is willing to stand up against the medical establishment. She was able to testify about the fear that doctors face, the lack of reliable testing and the experience of seeing patients get better with long-term antibiotics.

Perhaps equally important, was the testimony of a representative from the Minnesota Pharmacists Association, Laura Keller:

Laura Keller, explained that antibiotic resistance is not caused by overuse, but by underuse, that is, not giving a strong enough or long enough dosage and treatment to kill infections.

Keller also told the committee that treating these kinds of complicated infections must be done case by case and guidelines cannot provide individualized care.

The resolution was passed by the Minnesota Board of Medical Practice on March 13. It was a narrow majority. Still, they capitulated that the science did not yet exist to warrant punishing doctors. The resolution states:

in the interest of allowing time for science to resolve the issue, the Minnesota Board of Medical Practice (MBMP) voluntarily will take a five-year moratorium on the investigation, disciplining or issuance of corrective action based solely on long-term prescription or administration of antibiotic therapy for chronic Lyme disease.

I find the article about the passage interesting. The author goes on to only quote those docs who opposedd the resolution. They use the specious argument that the "legislature should not practice medicine". No legislature is practicing medicine. They are returning the right to practice medicine to the doctor. The other specious argument is "this will release a floodgate". Fear-mongering. Great. As though each case wouldn't be considered on its own merits. They refer to the IDSA guidelines. You know, from that panel that was found to have manipulated the guideline process and to have many, many conflicts of interest. That same panel, who did not follow the agreement with an Attorney General and rigged the vote in the imposed review process. Yeah, they're credible.

The IDSA has had authority vested in them and has been given the means to control the education of the medical community when it comes to Lyme disease. Still, a majority of those on this panel agreed that the science is not there to support disciplinary action against doctors trying to do the best they can to treat their patients.

It is only in place for 5 years and will be reviewed again, then. Perhaps they are hoping the subject will not be so publicly volatile then and they can just let it slip. Perhaps they are genuinely concerned that the guidelines process has been skewed and needs to be reconsidered. Who knows? I can't read minds. It seems to me, though, that this is a bigger victory than passage of a law. If we can start to get the medical community itself to shift its attitude, that would have a far greater impact.

If the medical community can acknowledge that science has not disproved the existence of a persistent illness, perhaps they will fund more research. How many years did they deny that Chronic Fatigue was real before research found the cause? When will they stop calling a patient crazy just because they can't figure out what's making them sick? Perhaps they'll start to accept that the doctors who are treating the patients know best right now. Perhaps, they'll even help us fight the insurance industry so that we can get proper tests and have our treatments covered. I'd much rather see the medical establishment wake up and get on our side, than have to watch state by state legislative battles where the best hope is simply to relieve docs from being afraid to treat. That's something, but not every state will win that battle. And we need so much more.

I close these thoughts with a statement from Dr. Maloney about why this victory is so outstanding. Its a simple statement, yet it encapsulates the gargantuan challenge for Lyme patients tragically having to fight to receive care:

The support group is small and many are ill.

Pure Conjecture

2010-03-22T11:57:00.000-07:00

There is something I've wondered about my physical condition for years. I wonder both how it can be and whether other Lyme patients experience it. I have wild theory that is pure conjecture and probably nonsensical. I'll throw it out to the universe and see how many scoffs, chuckles or expressions of wonderment it generates.

Or maybe someone can even explain it to me.

For much of my youth and adult life I have been physically active. For many years I was a competitive athlete. If teaching aerobics counts, I guess I was even professional. So, I've always been rather fit and I'm naturally slender. I don't tend to gain wait. Though I have done since being ill, its not a worrisome gain. At 5'11" I can carry 155 or 160 pounds. Currently I'm at about 145.

These past few years, I've been rather sedentary. On days when I think I can manage not getting lost in my own neighborhood, I walk the dog. I don't do much more because I need supervision if I'm to avoid injury and I can't afford to pay someone to supervise me. (I really need supervision to navigate my days in general, but that's another topic.) So, I sit around the house most of the time. Writing. Reading. Supervising homework. Spacing out.....

In all these years of inactivity, however, I have not lost my musculature. Why haven't I atrophied at all? Why is it that after months of sitting on my arse, I can still, on a good day, hike up a hill or ski for 5 hours as though I had never stopped exercising?

In my two days of skiing last week, I pushed my body because it was exhilarating to do so. It was joyous to feel my quadriceps burning. I kept waiting for my legs to give out. Granted I was on easy slopes with my daughter for a bunch of the time. It was work though, practically skating across and pushing so many turns on a run with almost no slope and soft, mushy spring snow. Then, each day I had at least 2 hours to ski by myself. I was taking long runs down the intermediate slopes. Ok, a lot less turning without having to go slow for someone else's sake. Still, I did ski the glades where you have to turn often to avoid trees. Even if it was all gentle exercise, it was a 4 hours of it.

Why weren't my legs tired at the end? Why didn't I have muscle soreness? Shouldn't my body be reeling from the sudden use after such a prolonged period of inactivity?

My acupuncturist used to marvel at the fact that I wasn't losing muscle strength. He had no explanation for it. No one does. It doesn't make sense.

So, here's my wild hair of a theory which has no basis in any practical science at all: maybe this beehive that's roaring inside of my body is electrical. Could it be that the constant activity of my nerves is actually stimulating my muscles?

I have no idea if there is any physiological basis for this having any possibility of truth. I simply know that I should not be fit now. Yet, I am. My car was rear-ended two years ago and I received a back injury. I went for physical therapy. When they did their strength and flexibility measurements, I was stronger and more flexible than most. How is that? The only muscles that I work out these days are in my fingers. Why do I still have defined biceps and calves? Why can I hike up the hill with my friends and be in the front of the pack? And never feel like I've exerted myself? How is it that my resting heart rate is 50. Up a whole 3 beats per minute from my highly fit days of 47. I used to run miles every day. I understood a 47 bpm heart rate then. Shouldn't it be higher now that I'm a couch potato?

Any other Lyme patients have this phenomenon? Any other neuropathy patients? Anyone understand how this can be?

Good Days

2010-03-22T10:42:00.000-07:00

I do have them. Days where I can function almost normally even though my ears are screaming and stabbing and my feet hurt and my body is aching and buzzing. I cherish those days.

Last week, I was lucky. I had two days good enough to enjoy some skiing with my daughter.

A good day isn't like the old days. I'm not up at 6 and first on the slopes. We ambled into the lodge around 10 am. I take the time to brace myself for the jarring stimulus of noise, movement, lights, energy. We're out on the slopes by 11. I don't ski straight for 7 or 8 hours, either. There are long breaks. Still, I was giddy at being out there and reminded of how much I love it.

I made a discovery, too. Exercise is very challenging for me because of my feet. My nerve endings don't sense the ground beneath my feet well anymore. This can make me wobbly or even cause me to fall. I have had injuries which I didn't even realize until later, because I didn't recognize the new pain. All of this makes me wary of navigating terrain and particularly wary of anything that requires rapid response.

Take those feet, bind them in a sturdy boot that supports the ankles and put me on skis where using the soles of your feet to navigate is no longer necessary and I'm mobile again! It hurt like the dickens. The entire surface of my feet and ankles up to the top of the boots felt like they were being rub-burned. I opted out of renting a helmet for this reason. I think the resulting headache/fog would have been more risky than any fall I was going to take on easy slopes.) Still, the controls for navigation were coming from the rest of my body and I could manage it. As long as I wasn't having cognitive issues. (Thank goodness for good trail signs! It didn't matter where I might have planned to go. At least I could follow signs to keep me on appropriately challenging terrain.)

Thus, I was able to take my daughter on her first chair-lift ride. To be able to do this was precious. She's 10 now and there are few years left to share wondrous firsts like that. She once again displayed a strong character trait: her ability to express fear in the face of something she's driven to do and to move through that fear and attempt her goal. She was nervous about getting on the lift. But she did it and she loved it.

The next discovery: being on the mountain was the most peaceful time I've had in years. This was spring skiing on a weekday in New England. The slopes were very lightly populated. In the afternoons I had several runs to myself. It was exquisite to sit on the mountainside and take in the near silence of it. I didn't want to get off and re-enter the world of sensory assault. I skied to the last run possible each day.

I also crashed immediately afterward. It was excruciating getting back to the room and within minutes I was asleep. I did wake up for dinner, but was then so symptomatic I became terribly grumpy. Ok, nearly murderous. I just want to kill everyone making sound and movement. My ears can't take it. My head wants to explode. Then I can't get to sleep again. Its a vicious cycle.

Still, they were good days. She took a lesson and then wanted to show me what she learned. It was the end of a day and she was tired. She fell soon after starting down the hill. One of those falls where your skis stay flat and they keep sliding. It was only a green (easy) slope, but she panicked. I guided her down the rest of the mountain as she held onto the end of one of my poles. It took us an hour and half. Resting for her to cry and recover. Assessing, when people asked, if we should get ski patrol to take us down. She stubbornly wanted to keep going. She even skied the last bit by herself, her confidence restored. It was a good day because I could do this for her. My symptoms could be pushed enough into the background for me to be there for her in the way that she needed. I had the patience, in the lower-stimulus environment of the mountain, to hang in there with her through her bouts of tears and self-deprecation. To give her time to pull herself together and keep on trying.

The next day, we got on the learning quad and did two runs down the bunny slope so she could regain some self-confidence. Then, we went to the very top of the mountain and she skied all the way down by herself, with a moment of assistance on a narrow steep section. She was very satisfied. She was done with skiing for the day. She went swimming with her dad* for the rest of the afternoon.

I was very satisfied that we'd had this adventure together. I skied the blue (intermediate) run through the glades a few times that afternoon. No one else was there. I kept going back, so I could sit with the trees and the embracing quiet of the mountain. I was cherishing those two good days. Soaking up the energy of it, as if maybe I could store it up to fend off the sensory overload that I knew was coming when we headed back into the bustle of normal life.

It was two good days.

* It is important to note here that these days would likely not have been so good without the support of her father. With someone there to help her get up and dressed, to track all the equipment and accoutrement, to drive, push through crowds, keep momentum moving in the intended direction, etc. The biggest thing is that he's there to take over supervising her when I need a break. For someone with my neurological issues, having this kind of logistical support is a minimal requirement to functioning. I can manage at home in an environment where she can occupy herself while I nap and there is less stimuli to manage. But in an unknown environment, where so much more has to be managed and tracked and navigated through, I wouldn't last more than an hour or two before fading out.

Bummer

2010-03-17T09:56:00.000-07:00

I was supposed to have the follow-up appointment with my new neurologist today. I've completed all but one of the new battery of tests she ordered and was looking forward to hearing her assessment of what she can do about my auto-immune disorders.

Only, she called in sick.

I'm worried about her, as she was away on sick leave for months. I hope this is just a virus and not related to her extended leave. So, I wish her well and look forward to getting the call about rescheduling.

Meanwhile, I remain in limbo. Having finally seen her, after a year of trying, my anxiety level had gone down somewhat. I had a modicum of cautious hope. I can feel the anxiety creeping back in now. I hope I get a new appointment soon.

Its all such a long and painful process.

Why Are We Being Denied?

2010-03-16T09:30:00.000-07:00

Whenever the IDSA guideline proponents argue against the right of doctors to treat their patients as they see fit, they seem to most commonly express concern about the dangers of intravenous antibiotics. I haven't heard any other reason for which they are willing to deny care to patients and to testify against fellow doctors for treating those patient. From their own report on the guidelines review hearings last summer:

The panel heard from some of the authors of IDSA’s guidelines, who concluded there is no convincing biologic evidence for symptomatic, chronic Borrelia burgdorferi infection after completion of the recommended treatment for Lyme disease, which, according to IDSA’s guidelines, is 10-28 days, depending on the stage of illness. Longer-term antibiotics may be dangerous and can lead to complications, according to IDSA.

A short note on the misleading statement about "no convincing biologic evidence": Its a red herring. Not only is there evidence, they have never proven that chronic infection cannot be possible. When denying people treatment, don't you have the burden of proof here?

As I've said before, I'm not a fan of antibiotics. I've yet to be convinced that they are the right treatment for Lyme Disease. Though, I must admit, that in my history with the illness, thus far, I have seen the most sustainable improvement when I was getting injected antibiotics for approximately a year. I was not cured, but I was definitely improved. And I definitely declined symptomatically once the antibiotics were stopped because Harvard Pilgrim Health Care retroactively denied coverage of my treatment. (Is that legal, by the way? To demand to be repaid for a year's worth of treatment which they had already paid for?)

There may well be other, better treatments out there, but since the IDSA has been allowed to disproportionately influence the entire medical community regarding Lyme Disease, no one is researching treatment because the IDSA denies that any treatment is needed. Therefore, it is the only option being offered to people who suffer long-term from Lyme. Since the objection to allowing this treatment is such a strong concern for the deleterious effects and grave risks, let's just consider this claim about the "dangers" and "complications" of longer-term antibiotics.

Here's a recent study on the subject:

Safety of intravenous antibiotic therapy in patients referred for treatment of neurologic Lyme disease

This group studied 200 patients with neurologic Lyme Disease who received intravenous antibiotics for a mean duration of 188 days (a total of 23,654 IVD-days.) A summary of the results:

no one died
3.5% experienced allergic reactions to the antibiotic
1.0% had gallbladder toxicity
IVD complications occurred in 15 patients (7.5%)
IVD complications represented an incidence of 0.63 per 1,000 IVD-days
6 suspected line infections for an incidence of 0.25 per 1,000 IVD-days.
Only one of the IVD infections was confirmed
resistant organisms were cultured from any patient.

Now, I don't want to be that 1 person with the gallbladder toxicity. Allergic reactions are no fun, either. Nor is an incidental infection. Still, I've been suffering for 5 years. I can't hold a job due to cognitive unreliability and unrelenting fatigue. The risks my father took with cancer treatments were far more significant and no one balked at him or his doctors for giving them a try. As a patient, I am very comfortable with the risks seen here. These seem like pretty good odds to face for the chance of getting my health back. Indeed, here is the study's conclusion:

CONCLUSION: Prolonged intravenous antibiotic therapy is associated with low morbidity and no IVD-related mortality in patients referred for treatment of neurologic Lyme disease. With proper IVD care, the risk of extended antibiotic therapy in these patients appears to be low.

Tell me again. What exactly is the IDSA's scientific and compassionate reason for tyrannically denying me the opportunity for treatment?

Mourning Mornings

2010-03-11T11:40:00.000-08:00

I've been struggling with this illness for at least 5 years now. As my sensitivity to sound, light, smells, and motion worsen, I definitely have acute episodes of extreme discomfort. These sensory issues, along with the cognitive losses, are far more debilitating to me than any of the pains in my joints or the tingling/burning/numbness in my extremities. Feeling assaulted by the normal input of the world and not being able to think properly create cycles of despair and loneliness. Though, it is usually later in the day that I have to shut down from the overload, its is the mornings which wear me down emotionally the most.

For the first 42 years of my life, I was an excellent sleeper. I put my head down on the pillow and within minutes I was asleep. Eight hours later, I would awake refreshed and energized for a new day. When I went skiing with friends, I was often the first up on the slopes. When I did some programming for a health club, I taught a 6am aerobics class to get the day going. I might have phases of being a night owl, but I still slept 8 hours, ready to hit whatever road lay ahead for that day when I awoke.

Now, waking up is a chore in and of itself. The first thing I notice is that my ears are already screeching and they are filled with the roar of things going on outside and inside my house. Next, it is the pain in my feet. Sharp pains. As though someone has run a knife along the underside of my toes right where they meet the balls of my feet, and another slice across the middle of my soles, feeling as if the tendon in my arch has been severed.

Then I assess the level of the tingling/burning sensations. Is it just to my ankles? Can I feel it in my calves? Is it up past my knees? What about my hands? Can I feel them? Can I move them? Do they feel swollen? How bad is the ache in my elbows? My hips? My shoulders? How stiff is my neck? Do I have a headache? How's my face? Are my lips tingling? Is my face puffy? Can I feel my face?

Worst of all: can I fully wake up? Are my eyes open? Sometimes I can't see for a while, so I have to check if my eyes are open. Other times, I just see a world behind a waterfall. There are things there, but I can't quite make them out. Can I lift my head off the pillow? If I try to move, will my body actuate the commands from my brain? Its hard to explain this inability to waken. I lie there, hearing all that is going on around me, but it feels as if I'm in a coma. I can't quite break free of the sleep state. Some days this may just be minutes. Others it is hours. I focus on breathing. I can't say I get panicked any longer. I used to panic. It simply made things worse. Now I stay calm and try to breathe through as much as I can while I wait it out. There is no point in pushing myself too hard. If I even made it upright and started walking, I wouldn't make it down the stairs.

I suppose if I didn't have people I care for, interests in life, or things I want to do, I wouldn't care. I could just wile away my days, lingering in bed. However, that's not me. Perhaps, I would have been better off with different cognitive impairments. I have horrible short-term memory and attention problems now, but my intellect is still fairly keen. My imagination is in tact. I have an active but unmanageable brain. I need a personal assistant to keep me on task. I've always had an active brain. I have never been bored in my life. I always find things of interest to pursue. I once realized that if I were locked away in a cell with nothing to do, I'd probably write a novel in my head and then start on other creative pursuits. So, here's the thing: I have things I want to pursue. I want to get out of bed and get going. For me, nothing is more deflating than the fact that I can't.

Day after day after day. Months on end. Years gone by. My mornings are not what they once were. Sometimes they are not at all. Mornings have given over to mourning. Mourning the person I once was. The life I was once living. The world I was once enthralled with.

Lyme Guideline Limbo

2010-03-09T14:16:00.000-08:00

When last we spoke on the subject, I mentioned that the organization leading the charge against acknowledging and allowing treatment for patients with Lyme which doesn't go away after a short course of antibiotics is the Infectious Disease Society of America's (IDSA) Lyme Disease Guidelines Panel (LDGP.)

I also mentioned that this group was investigated by the Attorney General of Connecticut.

Before we continue on, we have to be clear about what the Attorney General was investigating. This was not an investigation of the science or the medicine. As reported:

Blumenthal thanked members his office who worked on the investigation -- Assistant Attorney General Thomas Ryan, former Assistant Attorney General Steven Rutstein and Paralegal Lorraine Measer under the direction of Assistant Attorney General Michael Cole, Chief of the Attorney General's Antitrust Department.

That's right. The Antritrust Department. I'm no lawyer. I'm certainly no expert of antitrust laws, but I think I get the general idea. Antitrust laws are designed to make sure that business markets are not manipulated by unfair practices which eliminate the chance of fair competition. I do know that they originated in the US in response to monopolies in industries such as oil and transportation. You can read about the birth of those laws here.

Since I'm not versed in the intricacies of this area of law, I have to trust that the Attorney General and his people understood how they might apply to a non-profit, special interest society which is impacting the delivery of health care. You can see the use of antitrust language in their findings:

Blumenthal's findings include the following:
The IDSA failed to conduct a conflicts of interest review for any of the panelists prior to their appointment to the 2006 Lyme disease guideline panel;
Subsequent disclosures demonstrate that several of the 2006 Lyme disease panelists had conflicts of interest;
The IDSA failed to follow its own procedures for appointing the 2006 panel chairman and members, enabling the chairman, who held a bias regarding the existence of chronic Lyme, to handpick a likeminded panel without scrutiny by or formal approval of the IDSA's oversight committee;
The IDSA's 2000 and 2006 Lyme disease panels refused to accept or meaningfully consider information regarding the existence of chronic Lyme disease, once removing a panelist from the 2000 panel who dissented from the group's position on chronic Lyme disease to achieve "consensus";
The IDSA blocked appointment of scientists and physicians with divergent views on chronic Lyme who sought to serve on the 2006 guidelines panel by informing them that the panel was fully staffed, even though it was later expanded;
The IDSA portrayed another medical association's Lyme disease guidelines as corroborating its own when it knew that the two panels shared several authors, including the chairmen of both groups, and were working on guidelines at the same time. In allowing its panelists to serve on both groups at the same time, IDSA violated its own conflicts of interest policy.

What is clear here is that the Attorney General was not making a medical assessment. He was making a process assessment. That is, he was looking at whether the process through which the guidelines were published was a fair and open process where competitive ideas were given a fair chance to be considered. For instance, is the panel really going to consider all evidence when the chair is able to "handpick a likeminded panel"? What you can see in these findings is a process wherein there was a preconceived notion and the panelists were chosen based on an understanding that they would not challenge that notion.

There is also collusion. The IDSA's group shared chairmen, authors and panelists with another, supposed independent, medical society who released Lyme Disease guidelines. Yet, never did the two organization reveal how related their groups were, creating the illusion that they reached their conclusions independently. Why the deceit?

Why indeed. What could motivate two not-for-profit organizations to do this? Here's an example of their self-defense:

"The Infectious Diseases Society says it's never been proven whether these patients still have Lyme disease or something else. The group continues to defend its standards, which say short-term antibiotics are effective for nearly all patients. Long-term antibiotics are unproven and potentially dangerous, because overuse of the drugs can lead to drug-resistant infections, the society says."

This is in response to the antitrust charges. Note that they are not debunking the charges themselves. Also notable is that the IDSA doesn't require proof that Chronic Lyme doesn't exist, they require proof that it does. A patient is diagnosed with an illness, gets the proscribed treatment and is still suffering from all the same symptoms, does not test positive for anything else, and they can't prove it's not persistent Lyme, but they can deny them treatment.

The third thing to note is that their objection about the existence of persistent Lyme seems to be attached to their concern about the use of long-term antibiotics. If we decide that a persistent infection could be effectively treated with something else, would they still deny the existence of a persistent infection? I can certainly see the value to a robust exploration of the efficacy of long-term antibiotics. Hey, let's do some more research. Showing that one antibiotic didn't work, does not eliminate the possibility that another might. But even if antibiotics are not the answer, that's a different question than whether a persistent infection exists. So, I wish they would de-couple these two points.

Still, no matter their defense of their medical opinion, they are not defending their process. They are capitulating to the findings. This renders the opinions of the group suspicious.

And it still begs the question, "why?" Was it to protect the world from antibiotic overuse? Well, let's go back to the Attorney General's report:

"The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion. In today's healthcare system, clinical practice guidelines have tremendous influence on the marketing of medical services and products, insurance reimbursements and treatment decisions. As a result, medical societies that publish such guidelines have a legal and moral duty to use exacting safeguards and scientific standards."

Unfortunately, the motivation doesn't appear to be altruistic. While the not-for-profit organization that this panel is supposed to represent may not have questionable motivation, the individual members of the panel itself do. Money. Its so often about money. The panelists had financial interests in drug companies and Lyme tests? And had consulting arrangements with the very industry that is denying us treatment? These same people are testifying in court against other doctors? How are they credible?

How can we trust the work product of a group of people with such varied conflicts of interest? We can't. Therefore, the IDSA agreed to have a conflict-free panel created to review the guidelines. They agreed to a public process and voting procedure that would ensure that divergent research, clinical experience and scientific and medical opinion would be considered as they questioned whether the guidelines needed to be revised.

There have been questions along the way about whether the IDSA was meeting the spirit of the agreement in its openness. The supposedly public hearing did not allow press, the room was closed. Only after some public pressure did they agree to have the proceeding streamed online.

Worse, they violated the agreement about the voting procedure such that it would be almost impossible for the outcome to require a guidelines revision. I'll write a separate post about the details of that. The bottom line is that the review process is now hung in limbo. Meanwhile, the restrictive guidelines which are used by insurance companies to deny treatment are still in place.

I don't understand how such a suspect work product can be justifiably used. There are other medical societies which publish different guidelines. (see ILADS) Clearly there is no universal medical opinion. We know there is no definitive science. Yet, the IDSA, the group shown to have conflicts of interest, is allowed to monopolize control over the dispensation of treatment to hundreds of thousands of suffering people. How is this legal? And when does the Attorney General get to say, "Hey, we signed an agreement to avoid the conclusion of my investigation. You violated that agreement, so now I will press forward."? If his antitrust charges are proven true, are these criminal violations? I don't understand enough about the pertinent laws to assess that.

What I do know: its morally reprehensible. I don't know how these people sleep at night.

Burden of Proof

2010-03-01T13:18:00.000-08:00

While I'm writing the next installment about the IDSA guidelines review process, I've had a thought.

I was engaged in a debate about the validity of Chronic Lyme Disease recently. It was frustrating. I avoid these discussions because they don't get anywhere and there is something about them that I find very flawed. It has taken me a while to pinpoint it. I think I have done, though.

The IDSA has set the standard for how we define, test for and treat Lyme Disease. They claim there is no such thing as Neurologic Lyme or Persistent Lyme or whatever you want to call it. One of their representatives is a vocal advocate for labeling any ongoing symptoms after a short course of antibiotics as a psychosomatic illness. Based on IDSA authority, doctors across the country are told that they cannot treat a patient for more than 4 weeks. If they try, they are flagged by insurance companies and their licenses are threatened. Members of the IDSA often appear at Medical Board hearings to testify against their fellow doctors who try to treat patients. So, patients are left to languish.

In every debate about whether the longer-term illness that people are experiencing is "real" or not, those who want to believe in the IDSA guidelines insist that those who don't must prove that Chronic Lyme is real. Any attempt to discuss the matter devolves into persistent demands that you reference scientific studies which prove to their satisfaction that Lyme is persistent.

Of course, those of us who are just patients, don't have the skill set nor the resources to know all the studies that may or may not have been done. And, so, we are told we have no place at the table. The guidelines supporters believe they have rightfully ended the debate.

Here's what bothers me: Where is the science that proves beyond all doubt that persistence is not possible? Where is the science that proves that long-term treatment is never helpful? Where is the science that proves that these patients suffer from a psychosomatic disorder?

It seems to me that if you are going to override what the clinical doctor, who sees the patient, is asserting that the patient needs and, by doing so, you are leaving hundreds of thousands of people to suffer and die, the burden of proof is on you. Just because you haven't figured out the mechanism of the illness or what might be the best course of treatment, does not mean that you have the right to deny doctors and their patients the ability to try and figure it out the best they can right now.

That burden has not been met.

So, from now on, I am going to insist in any debate about whether patients need treatment for their ailment that you prove beyond a doubt that they don't. I refuse to chase the red herring of having to prove that they do.

Clearly, the science is limited, thus far. Fund the research. Fund it with monies that do not come with conflicts of interest. Make both the process and the results of all the studies public. Until you do, stop being the de facto law over the private practices of other doctors. Get out of my way and let me have some chance, any chance, at recovery.

Testing, Testing, Wrong.

2010-02-27T09:19:00.000-08:00

I'm being put through a new battery of tests by my new neurologist. Some of them are tests I've done before and some are new. Its an intense 3 weeks. I'm happy to have all these tests done if it moves the process along and we can figure out how to get treatment for me so that I can recover my life.

However, I find some of the tests problematic. I don't understand how the medical world figures out anything, sometimes. Here is a short list of the inanity of the testing protocols I've faced:

I have complained for years that my hearing has become over-sensitive. Air conditioning systems are a constant tidal wave roaring through my head. I can hear small sounds hundreds of feet away and they grate on my brain. Sharp sounds are just that: piercingly painful. The world is a heavy metal concert assaulting my head every day. It is the single symptom for which I would take my life if I were so inclined. I have only had one doctor even note my complaint about hearing.

When she did, I was sent for hearing exam. An exam to test for hearing loss. Hey, guess what? I don't have any hearing loss! Yet, this is the screening test for referring you to a hearing specialist. Even though hyper-acusis is a known hearing condition, in our health care system, controlled by insurance companies, one must fail a hearing loss test to be referred to an ear doc. Testing, testing, wrong.
I live with tingling/burning/numbness/sharp pains in my extremities. For the most part this is just annoying and distracting. I've learned to move through the pain and the other sensations have become part of the white noise of my internal self. It does bring functional issues. I don't feel terrain properly under my feet, so I can be klutzy, even injure myself. I also have tremors and those cause functional issues. Sometimes I can't write or hold a cup or do myriad things that require fine motor control. At this point, since I'm used to having pain which is not a real "injury", my brain doesn't react to the pain in my feet the same way it used to. What this means is that I've actually injured my feet or ankles without realizing it. Not good. Mostly, though, these neuropathies are an indicator that something is going very wrong in my nervous system.

So, I'm sent for an EMG, or nerve conduction exam. The exam took more than twice as long as expected and, of course, I asked why. "Because we're getting the lowest possible reading in the normal scale on one side and the highest possible normal reading on the other side. We never seen anything like this before, so we're rechecking to make sure we're getting the right readings. This is very abnormal. But, both readings are in the normal range, so we're reporting it as normal." With that, there is no more consideration of my neuropathies. Testing, testing, wrong.
Yesterday, I went for an Autonomic Nervous System test, aka Tilt Table Testing. The docs have determined that there is something wrong with my autonomic system because I have body temperature control issues, heart palpitations, unexpected shortness of breath, sudden weakness, high IgG levels without having Celiac Disease and I suddenly became allergic to every single thing I've been tested for. The one test for whether my autonomic system is in disarry is apparently this Tilt Table Testing.

In this test, they hook you up to pulse monitors, blood pressure monitors and breathing monitors. You lie down and get relaxed on a table and they take baseline measurements. My resting heart rate is 50. Then they have you do a breathing exercise. Basically, deep breathing: "breathe in as deep as you can for 5 seconds, then let the breath out over a 5 second period." Meditation anyone? I do a lot of it. This kind of breathing is calming for me. I'm not sure what they're measuring with this. But then, they strap you onto the table and tilt you up to a not-quite-vertical position, with one arm propped out parallel to your heart level. It's a stress position. Its fairly uncomfortable. My wrist and elbow on the propped arm were in pain, my knees and feet were in pain. I was physically uncomfortable. What they're looking to do here is to stress the autonomic system and see if the heart rate/breathing/blood pressure dynamic gets out of whack. Only one problem: I don't necessarily get stressed by physical discomfort. I can breathe through it. I used to be a competitive athlete. I performed in state aerobics competition with an ankle that I had sprained just 2 day earlier. I broke my wrist about 5 years ago, walked to my neighbor's house and asked if they would sever me dinner before taking me to the emergency room because I knew it would be a long wait. I was very calm. Its just something I've learned to manage. I can acknowledge pain so that it can be attended to without becoming stressed. Pain is temporary.

So, if they were trying to create a stress reaction in my body, physical discomfort was not the way to do it.

Meanwhile, my heart rate peaked at about 80. Now, that's a 60% increase over my resting heart rate. If anybody else's heart rate had jumped 60% instantaneously, it would have been noted as a stress reaction. Not mine, because 80 is a normal resting heart rate for many people and it is not considered to be stressing the heart. So, it will be recorded as "normal". My systemic dysfunctions are not going be validated. I'm penalized for starting at a much healthier baseline. Testing, testing, wrong.

Don't get me started on how the insurance-controlled testing protocol for Lyme meant a 2-year delay in diagnosis. Now, if that Tilt Table technician wanted to see my body get stressed, he should have asked me to talk about how this damn system is screwing me over!

One Strand at a Time

2010-02-26T14:31:00.000-08:00

After beginning to explain the dysfunctional system which leads to Lyme patients going untreated, I felt a little overwhelmed by all the strands of this diabolical web. I had hoped to post a follow-up this week, but became a little paralyzed by the breadth and depth of the issues, which include but are not limited to:

The Dole-Bayh Act of 1981
Insurance Industry Exemption to Federal Anti-Trust Laws
ERISA 514 (one clause in a huge federal bill that exempts Insurance companies from state laws)
monied interest in developing vaccines, treatments, tests, etc.
Insurance industry practice of denying claims as a matter of course in order to save money
the confusing chaos around an emerging disease
the closed-loop medical establishment (with repercussions from doctors protecting one another from outside scrutiny to the controlled distribution of research money)
the lack of any independent, official body advocating for patient well-being as the number one priority in health care dispensation
the impacts of a socio-political-economic system that puts corporate income at the top of its hierarchy of needs
a medical science philosophy where a patient's symptoms aren't considered real until someone can devise a test to verify said symptoms.

There are so many threads in this web. Some of them, when seen by themselves, may seem innouous. Others are problematic enough on their own to make you wonder how any reasonable human being could have thought that it served any public good to put it in place. Still, its not until you start to see how all the pieces fit together that you see the infuriating nature of it. Each strand strengthens the diabolical web, while the individuals twisting their one strand can convince themselves that they are only doing what they are required to do. They can ignore how their works fit into the overall trap and maintain an internal feeling of plausible deniability when it comes to culpability.

Of course, its when you are sick and trying to navigate this system that you are most likely to have the light hit the web at just the right angle for you to see it. When you have the least inner personal resource to fight the system in order to get what you need.

I write this post today as a sort of check list. To help me remember some of the many threads that need to be explored in order to shine that light on the web. I'll simply have to tackle one thing at a time and see if I can manage to show how they are tied together along the way. For Monday, I'll update the story on the IDSA and what has happened since they signed an agreement with the CT State Attorney General to review their guidelines. The case of the IDSA, their conflicts of interest, their connetions to the medial establishment, their guidelines and how they get used is a perfect demonstration of the trap created by the web. To write about it though, I must try to pick little chunks at a time, as it becomes a tome faster than the vibrations of the prey reach across the web to the spider.

Who is the spider? Well, I think we are. Every one us. We have, every step of the way, refused to revolt against the system we've watched being built over decades. More than a century, even. Because while the medical system has been radically altered with laws created in the last 50 or so years, the foundation for it all goes back to the laws that gave corporations "personhood". There are so many profound social dysfunctions that spring from that one topic. But, it seems to be getting way beyond a discussion about Lyme Disease, doesn't it? What if there is no way to get solid research available to the public and to force insurance companies to let doctors determine the best treatment for their patients without tackling these foundational issues? The more I learn about the obstacles to getting treatment for Lyme Disease and any ensuing health conditions, the more I run into these questions. So, my blog will have to traverse the ground of issues specific to Lyme Disease, such as managing symptoms, getting the right tests, learning about treatment options, etc, as well as, bigger public policy questions of a health care system that serves the people well, including the political and legal obstacles to shifting towards something compassionate and sustainable. I hope you'll bear with me, as I'm sure it will be a meandering amble.

Undue Influence

2010-02-22T12:16:00.000-08:00

Wow. Had you asked me, I would have said with such certainty that I had already blogged about the Infectious Disease Society of America's (IDSA) Lyme Panel. Now, I look through my posts and see that I have not. This is way overdue, then, as the IDSA's Lyme Disease Guideline Panel (LDGP) and their relationship to insurance companies and their practices is key to understanding why Lyme Disease patients are left to suffer and die.

Before I begin there are two things to understand:

I want to be very clear that the IDSA is an organization which researches and advocates for many infectious diseases. They have a very admirable history as regards their work in the '80s and '90s pertaining to AIDS. When I talk about the IDSA here, I am only referring to their Lyme Disease Guidelines Panel (LDGP).
It should also be noted that the IDSA is a private specialty society. It is not a publicly elected body. It it not a government agency. It has not been appointed any authority by any governing agency. As such, there is zero accountability for its actions unless legal action is taken up against them.

So, why am I writing about the LDGP? Because this private society has an enormous influence on how Lyme Disease is defined, tested for and treated throughout our medical system. This small group of people, with no accountability whatsoever, is controlling the dispensation of health care to hundreds of thousands of patients.

How are they afforded such influence? Because health care in this country is controlled by health insurance companies. Private, for-profit corporations. As private, for-profit corporations, insurance companies are legally obligated to maximize shareholder dividends. No other concern can over-ride this unless there are laws enacted to enforce other priorities. For an insurance company to maximize shareholder dividends, they must minimize expenses. The majority of the expenses for a heath insurance provider is the cost of providing care to customers. So, they must minimize how much care they provide, within the limits of the obligations stated in the insurance policy contract they have agreed to.

One way to minimize how much care you provide is to justify denial of care by deeming it unnecessary. As reported in U.S. News and World Report, where David is the patient and Goliath is the insurance company:

What few Davids know is that insurance contracts by law grant companies the legal right to manage a patient's care, including denying it, sight unseen, and give them the final say, if challenged. Unless the state steps in.

So, insurance companies seek out panels, studies, and consulting doctors and scientists that will support their denials. This search is, of course, one of cherry-picking. Any panel, study or consulting doctor will do. Its all a numbers game to them. We can talk about the insurance gambling industry later. What is pertinent here, is that a publicly unaccountable panel from a private society is serving the interest of a profit-driven insurance industry where the motivation is to deny care to patients. In this system, there is very little that the patient can do to fight for her own health care. There is very little the public at large can do, as there is no access point for the public to have a say in how the system is controlled. We are at its lack of mercy.

Lyme Disease is a fascinating case study in how this system fails patients and doctors. It is a complex story that dates back to laws enacted in 1981, just before the discovery of the organism that causes Lyme Disease. It is a perfect storm of the right to own bio-organisms, the right for researchers to privately own the results of publicly funded research, a disease that is challenging to identify because it is the newest "Great Pretender" with myriad presentations, patients who lose their ability to function and therefore fight for themselves, a privately run health care system, personal profit motives, egos that can't admit error, and the increasing need for people to protect themselves from potential litigation. Its a thriller which is still unfolding on a screen cast across the country with a supporting cast of hundreds of thousands of people suffering and dying in wait, while the main characters play a game of intrigue isolated from the impact it is having on the people they claim to be protecting.

For today, we'll stick with the basic controversy. Insurance companies use the LDGP guidelines to determine what they will pay for when a patient has Lyme Disease. The LDGP guidelines state that Lyme Disease is cured with four week of antibiotics, regardless of how long you've had the disease or what your symptoms are. So, insurance companies throughout the United States will only pay for four weeks of antibiotics.

No signs of improvement at the end of four weeks? Too bad. You're cured. If you're still sick, it must be something else. Oh, billions of tests can't find anything else, but still show Lyme Disease? Well then, its a psychiatric disorder. What? If you take antibiotics long-term you feel better? Meh, that's a placebo effect. Again, its a psychiatric disorder. Those seizures, tremors, heart murmors, that palsy, those pains that keep you from walking, the near blindness, the loud ringing in your ears, the hyper-sensitivity to light, sound, movement.... all these thing are in your head. Because the IDSA's Lyme Disease Guidelines Panel says you're cured. Now go away.

Now, if every panel of private medical socities concurred and all the research out there supported this conclusion, perhaps we'd have to figure out what's going on with these people. Lyme Disease is the biggest epidemic we have right now. There are an estimated 300,000 new cases each year. A significant percentage of these continue to be sick after receiving the unofficial, official treatment. People who have never had psychiatric problems before. Do we have a sudden epidemic of psychosis? If so, shouldn't we be urgently looking into this?

The truth is that 34 organizations have challenged the LDGP's guidelines (scroll down for link to PDF) in a recent review process. A process which came about because the CT State Attorney General investigated the LDGP for conflicts of interest and found:

Blumenthal's findings include the following:
The IDSA failed to conduct a conflicts of interest review for any of the panelists prior to their appointment to the 2006 Lyme disease guideline panel;
Subsequent disclosures demonstrate that several of the 2006 Lyme disease panelists had conflicts of interest;
The IDSA failed to follow its own procedures for appointing the 2006 panel chairman and members, enabling the chairman, who held a bias regarding the existence of chronic Lyme, to handpick a likeminded panel without scrutiny by or formal approval of the IDSA's oversight committee;
The IDSA's 2000 and 2006 Lyme disease panels refused to accept or meaningfully consider information regarding the existence of chronic Lyme disease, once removing a panelist from the 2000 panel who dissented from the group's position on chronic Lyme disease to achieve "consensus";
The IDSA blocked appointment of scientists and physicians with divergent views on chronic Lyme who sought to serve on the 2006 guidelines panel by informing them that the panel was fully staffed, even though it was later expanded;
The IDSA portrayed another medical association's Lyme disease guidelines as corroborating its own when it knew that the two panels shared several authors, including the chairmen of both groups, and were working on guidelines at the same time. In allowing its panelists to serve on both groups at the same time, IDSA violated its own conflicts of interest policy.

That investigation was reported in 2008. Its 2010. Do Lyme patients and their doctors have more freedom to treat as they see fit, now? No.

This story is a juicy one. Too juicy to be told in one post. More to follow....

Bugaboo

2010-02-18T17:34:00.000-08:00

Today I had an MRI and Brain SPECT scan. These are relatively innocuous tests for most. I didn't even have to get the gadolinium for the MRI. I did have some radioactive liquid injected for the SPECT. But here's one of my bugaboos about the medical process:

At each new place I've gone to I am asked to fill out forms about potential medical conditions, implants and symptoms. If you've ever gone for a test other than a blood draw, you're likely familiar with the "check list". Pages and pages of boxes to check "yes" or "no", whether you have this condition, or that symptom or any metal in your body or the possibility of an allergy. On and on and on.

I wish there was one universal list that I could fill out and just deliver a copy to each new facility. That's not the bugaboo, though.

Of the myriad things listed on those forms, they never mention the single most bothersome symptom I live with. The one thing that could drive me to drastic measures. Its The Symptom which makes me wonder whether life is bearable. Of all the symptoms I have, if only one thing could be fixed, this is what I would choose.

Not only is this symptom not on these lists. When I complain about it to the doctors, I cannot see a specialist unless I fail a screening test. The screening test is testing for the opposite problem of which I complain. There is absolutely no awareness of the vast impact this symptom has on a person. People have been driven to suicide because of this one symptom and yet it virtually doesn't exist to the medical world.

That symptom is hyperacusis. Over-sensitive hearing. Almost every history form in every doctor's office asks about hearing loss. I have only been to one that has asked about hearing gain. That was the otolyaryngologist that specialized in tinnitus and hyperacusis.

I won't go on to much about what its like to have hyperacusis. To give a you sense: the other day I was going crazy at this scraping sound that was ripping through my brain. It was unbearable. Its not simply that its so loud that I can't focus on anything else. Its the pain. As though someone were taking a metal emery board to my brain. Sharp sounds pierce my head like an ice pick. This particular sound was grating on me for what seemed like forever and I couldn't find the source. I was on the upper floor of our house and I kept looking out the windows to see if I could identify where the sound was coming from. Finally, after about 20 minutes, I saw my elderly neighbor emerge from behind the house that lies between our two houses. He was shuffling his feet in his driveway. About 200 feet away. That was just one of the aural challenges of the day.

Today, the fact that medical facilities have no awareness of hyperacusis was very painful for me. The operator of the MRI machine was at least sensitive to this problem. She gave me earplugs, along with earphones to protect my ears. Still, it was an hour of the fans, the machine engine, the cacophony of banging and buzzing sounds from the procedure and all the ambient sounds of light fixtures and air conditioning, etc. I emerged feeling that I had been beaten about the head the entire time.

Then I moved on to the SPECT scan. This was supposed to be the non-stimulus test. They inject you with a radioactive "tracer" and then you sit quietly for 45 minutes to reduce brain activity. They turn the lights down, pull a curtain and step away leaving you there to nap. Only they left me in the room with the SPECT machine running, the air conditioning blasting and only a curtain between me and the staff conversations with laughter, as well as, all of their activities: shuffling papers, placing things on tables, walking across the hard floor surface. If they were trying to lower the stimulus to see the blood flow of my brain at rest, they did not accomplish that goal. My brain was registering assault.

I wonder what it would take to get medical facilities to really understand the needs of a patient with hyperacusis.

I wonder how long I can live with this before I beg for someone to just disable my hearing altogether.

MA Bill H1148 update

2010-02-12T10:28:00.000-08:00

You may recall that I testified in front of the Massachusetts Joint Committee on Public Health this past September. As my previous posts noted, I've been pretty out of it since then. I do belong to a couple of online Lyme support groups where these issues are discussed, however. As I emerged from my prolonged stupor, I was dismayed to realize that I had not heard of any action on this bill since that hearing. So, I inquired.

The reason I haven't heard of any action is that there has been none. The bill is stuck in committee. I will have to make further official inquiries to find out why, but word on the street is that the Chair of the committee doesn't want to "legislate medical care". I'm unclear as to whether this is the House Chair (Representative Sanchez) or the Senate Chair (Susan Fargo). If you are a constituent of either one, please call and ask them to support H1148 and ask why, if they don't.

This infuriates me. Medical care is currently being de-facto legislated by an unelected group which is ethically compromised. (Update on the latest IDSA shenanigans coming soon.) The point to this bill is to allow doctors to decide the best care for their patients. Not insurers and unelected panelists who have financial - and I believe personal legal - interests in the matter. Lets face it, hundreds of thousands of people have suffered, many have died, because they have suppressed data and protected their own interests. I don't believe for one minute that their big concern is that patients will be given too many antibiotics. There are plenty of ailments that get treated with long-term antibiotics. There are also plenty of ailments where patients and their doctors are in control of what risks they are willing to take in order to find a path to health. I heard one doctor state that he thought the only route to end this debacle was to offer amnesty to the panelists. Wow. By doing so, we would be acknowledging that these people were given power over people's lives, that they abused that power, that people suffered, but that we won't make them accountable. That seems to be the modern American way and I feel ashamed our country for choosing that option time and time again, as it only encourages future abuse of power. Anyway, at this stage in the game, the IDSA panelists have powerful personal motives to fight to the bitter end to keep their guidelines sanctioned.

Let's be clear here, H1148 does not legislate any particular treatment plan. It doesn't require that a doctor give long-term antibiotics. It doesn't require that a doctor do anything. What this bill does is give the power of determining what the patient needs back to the doctor. It is the doctor's discretion. Not dictated by a law. Not dictated by some far away panel. And, most importantly, not controlled by insurance companies whose primary interest is healthy profits, not healthy patients. This bill is the opposite of legislating medicine. It is a bill that is required because we have a corrupt medical system where corporate profit motives dictate how we define, test for and treat illnesses. Lyme Disease is not the first medical condition that has required legislation to protect doctors and patients. Until we see real health care reform, where the profit motive is removed or significantly reduced from the dispensation of medical care, more and more laws like this will have to be enacted. It is the only path that patients have to fight for their right to health care.

Please, look at the list of Senators and Representatives on the Massachusetts Joint Committee on Public Health . If you're a constituent of any of them, call or write to urge them to move H1148 along. If your State Representative or Senator is not on the committee, find out if they have supported H1148. Ask them to sign onto the bill and to help get this bill passed. Many lives are depending on it.

Thank you!

The Doc Was In!

2010-02-09T18:48:00.000-08:00

Its been nearly a year that I've been trying to get an appointment with the one neurologist in my state, whom my insurance will cover and who knows how to work for a Lyme patient with auto-immune disorders. This delay was first due to an over-loaded practice. We had been calling since last March to get an appointment and had been repeatedly told that they couldn't even talk about booking an appointment for months to come.

Then, in September, I testified in front of the legislative committee considering laws to protect doctors who want to treat their patients with Lyme. I later learned that the neurologist had seen me there and instructed the staff to make room for me. Only, then the doctor went on medical leave for several months.

A tentative appointment was made for January and it was canceled at the last minute. So, today, I was anxious that the same thing would happen again. However, the doctor was in!

"How did it go?", you ask?

I can't say I'm optimistic. Though, that has nothing to do with the appointment. I started this medical odyssey in 2005 and its been a trail of frustration. At this point, I expect the system to work against me. That said, I liked the doctor a lot. We had to walk through the history again and the questions were very good. After some preliminary neurological testing, the doc confirmed that I showed signs of demyelination.

Of course, more testing must be done. All the testing must be re-done, because its been so long that now the tests from last winter must be done again. The insurance industry likes "fresh" tests. Through no fault of my own, I will have to be put through the ringer again. All in the hopes that this doc can navigate the system well enough to get the insurance company to cover my treatment. In talking to the doc and the staff, I do get the sense that they know what they're doing. So, I have some faith in that.

However, I'm concerned that having all the Lyme testing done again, along with new Lyme tests which I've not had before, will do the opposite of what we seek, which is to de-link the Lyme and the auto-immune disorders. If the insurance company sees that the doc is in any way linking the two, they will deny treatment. My hope had been to have the doc look strictly at the auto-immune stuff and only do testing regarding that, so that the diagnosis looks stand-alone. The doc's professional integrity won't allow for that, however, so the Lyme tests are being required.

I'm not looking forward to the testing, either. Some of it is benign, certainly. Tedious and wearing for me because being out in public is wearing, but no big deal. Other tests, however are unbearable. Particularly the EMG. The one where they zap you with electrical currents all over your body. I'm pretty sure this would be a painful test for someone who didn't have hyper-sensitive nerves. For someone who does, its easy to imagine that this was first used as a torture device and then somewhere along the way some doctor said, "hey, look what we can see with this!" I happen to be a little more wary of this test than some because my first go round was supposed to 30 minutes or so and it went for 3 hours. I was in tears and these docs are just looking at their monitors with curiosity and zapping me again. They hardly seem to notice that I was there.

Anyway, the upshot of today is that I will spend the next few weeks doing tests, tests, test. Urine, blood, MRI, brain scan, cognitive testing, EMG, blah, blah, blah. The hope - that thing I only have a vague sense of these days - is that we get enough objectively observable data which meet the insurance criterion for covering the IVIG treatment. Doesn't matter that the docs all say I need this treatment. Gotta find a way to get around the insurance game where they pay doctors, researchers, anybody, to give them any reason to justify denying your claim. No matter that what they're denying you is your life.

I see the doc again on March 17. Talk to me then.

In the interim, I'll write some posts soon about what's going on politically in the world of Lyme. The IDSA has been up to no good. More and more states are considering legislation to require insurance companies to cover what a patient's doctors' say she needs rather than allowing that to be dictated by these ethically compromised "guidelines". Plenty of interesting fodder to fill the space between now and then. Stay tuned.....

Absence

2010-02-04T09:49:00.000-08:00

I've been feeling defeated for the last 6 months, so I took a personal sabbatical. I stopped writing. I stopped trying to find a way to earn an income. I stopped everything except caring for my daughter. I immersed myself in escapism. I simply didn't have the energy or spirit to engage the challenges of my health and life situation.

My father passed away last August. Deaths are generally sad affairs and this was no different. It was fraught with our family's particular dysfunctions. Being physically disabled didn't help me cope with it, well. I was not able to get treatment while I was away and as I became more and more symptomatic, I was more and more vulnerable to the emotional overwhelm of it all. I was left profoundly sad.

I came home and scheduled an appointment for my bicillin injection - the only treatment available to me for the past year - only to learn that the insurance company had retroactively rejected the claims for that treatment. That is, they took back the money that they had already paid the clinic. I was told that I now had a past due bill and could not receive more treatment unless I could pay that bill. Thank you, Harvard Pilgrim.

Harvard Pilgrim has never sent a single communication to me, their customer. I had no way of knowing, until the clinic sent me a bill, that any claims had been rejected. We had to go through the broker of the insurance plan to learn that they rejected the claim because they have a lifetime limit of 1 month treatment for anything related to Lyme Disease. Doesn't matter if you've actually recovered or not. It also doesn't matter that we don't acquire immunity to Lyme and you could be bitten again and have a fresh case of Lyme. If you've already been treated, you'll get another dose for Lyme Disease.

My ex, who has been an absolute angel about providing a roof over my head and making sure I get whatever care I can, also had difficult news for me upon my return from my father's death: we had finally figured out how to manage living in separate houses. Only his end of the arrangements hadn't worked out and he had to move back in. As it turns out, the housemate I had found, had life issue of her own and she informed me upon my return that she wasn't going to stay.

Additionally, the one neurologist in MA who will see a Lyme patient and knows how to deal with the other health issues that can ensue, had to cancel my September appointment. She was away on emergency medical leave. A tentative appointment was made for January. I was to see her to figure out how to get treatment for the auto-immune disorders I live with now. That would have to wait.

So, August was a just a month of "everything that can go wrong will". Everything felt pointless. I had mustered a lot of energy in the previous months to find some way to get my life back on track and it seemed that the universe was mocking me. So, why try? I didn't have it in me to be angry. Or creative. Or productive. I just stopped.

I'm not sure where I am with it all now. I have come out of the complete state of disconnect and am doing a little bit. Re-envisioning what I can do with my knitting design work. Looking at what can be done to get around the obstacles to my health care. I don't feel highly energetic. I feel somewhat dispassionately engaged.

News about what's going on with the IDSA guidelines, their testimony in the NH legislative process and the recent Supreme Court ruling allowing corporation unlimited political influence are not encouraging. Everywhere I look, I see a system based on personal greed with little concern for the vulnerable in our society. Of course, there are individuals and even groups that care, but the bigger system is entrenched in a very de-humanizing way. My losing battle to get treatment is very related to that. When you're sick, how are you supposed to face off with an entire culture?

This is the question I grapple with. I certainly don't expect to take on the big fight. Its more a question of how to create an oasis in the desert of our humanity, wherein, I can get the treatment I need and have that oasis as a resource to drink from when I make expeditions into that desert.

At the bottom of all of this, is that I am a person of visions. Of dreams. Of longings. I dream of way society could be, yes. But I also dream of a life I could have regardless of the bigger picture. And its not a pipe dream. Its obtainable. I don't care if my feet are in pain. Or I'm tired all the time. Or that the sounds of the world are assaulting me constantly. Or even if my brain is foggy half the time. What I care about is that the cumulative effect of all these symptoms is that I can't pursue my dreams. I don't need full health to get back on that pursuit track, but I need some relief. Enough that I can be self-sustaining and have the personal space to let the dreams in.

This is what is so infuriating about the debacle of our heath un-caring system. Its not that people are sicker than they need to be. Its that their souls are in despair. Their dreams are erased. This is our particular form of genocide. Its not racial or ethnic. Its a genocide of the vulnerable.

My Letter to MA Joint Committee on Health

2009-09-18T08:22:00.000-07:00

To the Joint Committee on Public Health: September 18, 2009

Co-chairs - The Honorable Susan C. Fargo n Co-chair and The Honorable Jeffrey Sánchez and committee members: Senators Fargo, Montigny, Buoniconti, Chandler, Flanagan and Hedlund; Representatives Sanchez, Balser, Toomey, Murphy, Turner, Aguiar, Brady, Lewis and Humason.

I am writing to state that I support the intent of HR 1148. I am requesting that my letter be entered into public record as written testimony.

In the summer of 2005, I realized that I was persistently experiencing strange symptoms such as tingling and burning in my hands, feet and face. I could no longer organize myself, would forget things often, not recognize my friends, get lost going to places I had gone for years, had trouble walking from pains in my joints, some mornings I would wake without sight, my ears were ringing so loudly I couldn't concentrate, I had become extremely sensitive to light and sound, I was getting sudden, debilitating headaches and I was profoundly exhausted. Telling myself it was stress, I went to an acupuncturist. He informed me that he thought I had Lyme, that I should get tested and get antibiotics.

I had my first Lyme test in August of 2005. Because this test - which I later learned is 55% inaccurate - came back negative, it would take 2 more years, being told I might have MS or ALS or Fibromyalgia and any other number of frightening things before I would finally get more testing and a diagnosis. Because the insurance industry refused to pay for more tests and my doctor refused to test more, I had to pay over $1,000 and drive to a doctor in another state. My tests were, and continue to be, definitively positive for Lyme Disease.

This delayed diagnosis has had life-altering impacts. By the time I was properly diagnosed, I was completely non-functional. Many days I could barely walk. My hands and neck were shaking so much I couldn't hold a cup. I was having multiple seizures every day. I had to shut down my business. Treatment had minimal impact and we were struggling to understand why, until further testing revealed that the Lyme had damaged my auto-immune system to such a degree that I have now acquired Dysautonomia - my body no longer manages my heart rate, breathing, body temperature and digestion properly - and Chronic Inflammatory Demyelinateing Polyneuropathy (CIDP) - my nerves are damaged and I have progressively worse pain, fatigue, hyper-sensitivity, shaking, cognitive issues and more.

I am now, likely, permanently disabled. Though, it has been clear that I need treatment, my insurance company - Harvard Pilgrim - has retroactively denied my weekly injections of antibiotics for the Lyme Disease, though they definitely help me. For the CIDP, there is a common treatment, but it is extraordinarily expensive and I will need it long-term. The cost is $15,000 - $20,000 per month. Because the etiology of my CIDP is Lyme Disease, doctors are afraid to begin this treatment. They are afraid they will be liable for the costs if it is rejected by insurance and they are afraid to submit the treatment plan to insurance because they face the possibility of having their licenses reviewed for "over-treatment". Though CIDP has a known treatment, the very presence of Lyme Disease on my health record has made doctors everywhere afraid to treat me.

I am 46 years old and have had health insurance all of my life. Until 2005, I rarely needed to use it. Now that I have Lyme Disease it is, apparently, useless and all those years of healthy living where I saved the insurance companies a lot of money is meaningless. I am left to languish and possibly die. My family is on the brink of bankruptcy.

What is my 9 year old daughter learning about health care in America? That we don't care about those among us who are sick. It is more important for health insurance companies to make money. And so, she watches her mother, who once was a competitive athlete and successful business leader being transformed into an invalid while there is a known treatment that could help her.

I beg of you, please show my daughter that it doesn't have to be this way. Please let my doctors know that they can safely treat me. Please tell the insurance companies that they cannot profit at the expense of my life and the lives of tens of thousands of other Lyme Disease patients.

You are my only hope. Please do the right thing and pass HR1148.

Massachusetts physicians should be allowed to use their clinical judgment to diagnose and treat Lyme disease without fear of prosecution.

MA Legislative Hearing Next Week!

2009-09-14T22:06:00.000-07:00

Received from the TickedOff group for distribution:

Here is the information for the upcoming hearing for HB 1148, filed by Representative Robert Hargraves, which will allow all Massachusetts physicians the ability to treat Lyme disease based on their own clinical judgment.

HB 1148 (pdf)
This post serves as an initial announcement, but will be updated during the coming week as we receive more information.

What: Public hearing on HB 1148 (Joint Committee on Public Health)
Date: Tuesday, September 22, 2009
Place: Boston State House Room A1
24 Beacon Street Boston, MA, 02108
Directions
Time: 10:00 a.m. (If you plan to attend, please try to arrive by 9:00 a.m.)

Note: We will be sharing the hearing day with other bills and our time will be limited. We must plan carefully in order to utilize the time that we are allowed to full advantage.

Members of the Lyme community are encouraged to participate in each of three ways:
Written Testimony NEED YOUR HELP WITH THIS ASAP – Details to follow
Attendance at the hearing
Participation at the rally on the State House steps on the day of the hearing

We will describe each of these opportunities in subsequent emails. We are trying to keep this information as simple and “user friendly” as possible. Please bear with us, as we strive to clarify and convey the relevant information.

We look forward to working together with you!

BostonLyme Support Group

2009-08-10T08:38:00.000-07:00

I've had several inquiries about a support group in Boston. One of the reasons I wanted to have the "Under Our Skin" event was to see if their was interest. My contact with others living with Lyme has been predominantly online, as the nearest group is somewhere like Reading. That's not feasible for someone who doesn't drive. Nor is the time it would take feasible for someone who only has a few functioning hours a day.

So, yes, I would like to launch a support group in Boston. If you're interested, please post a comment here. If we have enough people, we can talk logistics (how often, where, etc.)

I would be happy to host a group in my home. We just need to figure out if that's a good enough location for enough people to make for a vibrant group.

Please let me know what you think.

What I Had Planned to Say

2009-08-09T20:02:00.000-07:00

Today, I spoke at the MFA. It was after the screening of "Under Our Skin". I had written down what I wanted to say, but there was no podium. And I'm not used to speaking in public, so I couldn't manage speaking and holding sheets of paper for viewing. I'm not sure what I actually managed to say, but here is the text of what I had planned:

Thank you for coming and thank you to my friends, Lynn Parisi and Pam Wylie, for putting this together.

Ok. I’m not a public speaker and under normal circumstances this would make me very nervous. Somehow, the old adage “picture your audience in underwear” has never been useful for me. I’m sure you’re all quite lovely in your underwear, but I’m not sure how that the kind of distraction is supposed to help me focus!

Truth is, in coming out and speaking in public about my travails, I feel exposed. Being at the most vulnerable time in my adult life, this is certainly not comfortable.

Yet, even as this disease profoundly impacts my life, wearing me down, depriving me of my ability to work and be the energetic, active mother I want to be, there is enough of the tigress left in me to want to fight against the injustice of what’s happening to Lyme patients. If my story and what I have learned can help even one person avoid what I have had to endure, its worth it to me. If nothing else, at least I can be of service in this way.

The details of my story are similar to what you’ve just seen in the film. I went two years without a diagnosis after we first suspected I might have Lyme.

At one point, I sat in a doctor’s office describing episodes of intense confusion, getting lost going to work, suddenly not knowing what knitting needles and yarn were doing in my hands. Knitting was my profession. I jokingly called it Knitzheimers, but it was no joke. It was happening more and more, along with other serious cognitive problems. I was scared and so were the people around me.

She said I was having some kind of post-traumatic psychiatric breakdown. In my mid-40s with no history of psychiatric issues. I replied that she was a scary woman, inappropriately making psychiatric diagnoses. Not surprisingly, we fired each other that day.

I later learned that I was having partial complex seizures due to a serious case of Advanced Neurological Lyme Disease. Even with definitive tests, when I went back to one of my doctors to report the findings, his response was, “You may have just been diagnosed with something that doesn’t exist.”

Now, all patients who face life-threatening, debilitating or chronic illness go through their own odyssey of physical and emotional challenges.
As a patient with Lyme, though, you get bonus challenges. You face things no patient should have to experience: your symptoms doubted, your diagnosis invalidated, and your treatment denied. There you are with a disease that brings profound exhaustion, persistent pain and cognitive impairment and you have to fight the system to get care. You’ve likely never been less able to fight anything at all.

Because you didn’t receive the care you needed, things get worse. More complicated. In my case, this means chronic auto-immune disorders.

How many of you have a coin in your pocket or purse? Please take one out and toss it. Heads you have Lyme Disease. Tails you don’t.

As a patient, it has been hard to understand how a test that is 55% inaccurate can be used as The Gatekeeper for diagnosis. This needs to change.

As a patient, it has been hard to face doctors who say your symptoms aren’t real. This needs to change.

As a patient, it has been depressing to have doctors tell me they can only give me 20 minutes and have no time to research my case. This has to change

As a patient, it has been overwhelmingly tragic to see that, despite the mounds of research and case histories that demonstrate how Lyme and/or complications can persist well beyond the proscribed 4 weeks of antibiotics, insurance companies can deny you any further treatment. The control that the insurance industry has over how doctors dispense medicine has to change.

As a patient, it has been shocking to learn that publicly funded research can be privately owned and controlled. That those given the voice of authority about a disease can have contracts with insurance companies who seek ways to deny coverage. That they can refer to their own work, to the exlusion of others. That they can be patent holders in the field they are presiding over. The influence that personal profits can have over how research is funded and reported has to change.

As a human being, I’m appalled that other human beings can deny the pain and suffering of others. That they can say, “Antibiotics are too high of a risk” to patients who face total debilitation and death. We give those who suffer other diseases the right to make that choice for themselves. My father has multiple myeloma. He has never been denied any treatment they thought had a chance to help, regardless of the risks. Those decisions have always been left to him and his doctors. Why are Lyme patients denied the simple decency of a fighting chance?

I’m not a fan of antibiotics. My 9 year old daughter has never had any. Before being diagnosed with Lyme, I hadn’t had any in over 15 years. Perhaps, with more research, we’ll find better, more effective ways to treat Lyme. But, for now, we are not being offered anything else. So, if this is all there is to give us hope, why is anyone allowed to deny us this?

In the bigger picture, this is not just about Lyme Disease. It’s about a profit-driven health care system. For-profit businesses are, by law, required to prioritize shareholder dividends over anything else. When it comes to health care, this is simply inappropriate. You pay for health insurance, but your insurer doesn’t care about you or whether you are actually getting health care. This has to change. Our health care system is not broken because people don’t have insurance. It’s broken because patients don’t have assurance. Assurance that when they need it, the system will work for them.

For all that I have to complain about, I’m lucky. Yes, I’m in pain, my brain no longer functions as it did and I am profoundly tired. I expend a lot energy to camouflage when I’m with people and I can fake it for a few hours at a time. This is no way to live. Particularly when it wasn’t necessary. Yet, as I say, I am lucky. I have caring people around me. I am supported by people who have no obligation to do so. My daughter’s father has been remarkable in his willingness to provide me, his ex, shelter in this storm. A storm we thought would be temporary but is seemingly interminable. But I have a roof over my head, food to eat and a wonderful community of friends.

There are tens of thousands of me around the country. Of the estimated 300,000 new cases of Lyme this year, about 25% of them will end up being chronically ill. That’s 75,000 people. Many, many of whom will end up unemployed and homeless, as they are bankrupted by trying to pay for their own health care while being profoundly debilitated.

It doesn’t have to be this way. At the very least, we can protect doctors who are trying to help. And require that insurance cover treatment that is ordered by a licensed doctor. CT and RI have already passed laws to do so. MA is, hopefully, voting on a similar bill this Fall. My odyssey is what it is now. But there is no reason that any more people have to face this horrible disease with the same horrifying medical system nightmare. Please call your state reps and senators and urge them to support legislation relating to Lyme Disease.

Thank you.

On TV at BNN

2009-08-05T11:53:00.000-07:00

Yesterday, I was interviewed by Chris Lovett of Boston Neighborhood News for their nightly news program:

Lyme Disease Events in Boston from Chris Lovett on Vimeo.

In the Local News

2009-08-05T08:11:00.001-07:00

I was interviewed last week about our upcoming event. I had no idea that it would end up online. So, for those who don't get the West Roxbury Transcript, here is a link:

http://www.wickedlocal.com/roslindale/news/lifestyle/health/x1307076102/Roslindale-woman-battles-against-Lyme-disease

Please join us on Sunday to learn more. Go here for more info.

It's Imperative To Treat Immediately

2009-07-07T13:44:00.000-07:00

Lyme is a complex disease that can be devastating. Though most in New England have heard of Lyme Disease, few seem to be aware of it's debilitating potential. I had been diagnosed with Lyme 1 1/2 years prior to learning that people die from Lyme Disease. It was only when I began noticing heart flutters that I was informed. We really need to be informed.

We're told that Lyme is hard to catch and easy to cure. Neither of these is true. A study of 14 New England towns in 2008 showed that 60% of the tick population carried the spirochete that causes Lyme Disease. Prevention is of utmost importance to protect yourself from the risk of serious permanent damage to your heart, your nervous system, your brain, your joints and more. There are two aspects to prevention: avoiding a tick bite and halting the spread of the disease if you've been bitten.

Because most people know to avoid being bitten in the first place, the one thing I usually try to impress upon people regarding Lyme disease is the importance of demanding a prophylactic course of antibiotics if you know you have been bitten by a tick.

Before going further, I will tell you that I did not take any antibiotics for over 15 years prior to being diagnosed with Lyme Disease. My 9 year old daughter has never had antibiotics. So, for those who know me, it is unfathomable that I am not only suggesting, but insisting that people take antibiotics. Now, let's continue.

Don't wait for tests. Don't wait for a rash. Don't let your doctor talk you out of it. Too many doctors do not understand the risks of delaying treatment. Those risks far outweigh any concerns about taking a course of antibiotics.

Why not wait for tests? The short answer is that the existing tests are simply too flawed. For the longer explanation, I'll try to avoid getting too technical, so bear with me.

Many doctors will claim that a patient can only be diagnosed with Lyme Disease if said patient has positive results from a two-tiered laboratory testing protocol. They might even cite this as the CDC standard. However, the CDC has repeatedly stated that the standard they use for epidemiological purposes is not meant to be applied in a "real world" setting:
Reporting of all nationally notifiable diseases, including Lyme disease, is based on standard surveillance case definitions developed by the Council of State and Territorial Epidemiologists (CSTE)and CDC. The usefulness of public health surveillance data depends on its uniformity, simplicity, and timeliness. Surveillance case definitions establish uniform criteria for disease reporting and should not be used as the sole criteria for establishing clinical diagnoses, determining the standard of care necessary for a particular patient, setting guidelines for quality assurance, or providing standards for reimbursement.
But the idea of simplicity and timeliness is too tempting for the insurance industry and many doctors, so they insist that this protocol is the only one valid for making a diagnosis. I suppose this would be fine if the tests were reliable.
The initial screening test for Lyme, used quite universally, is called the ELISA. The ELISA is known to be inaccurate up to 55% of the time.(1) That is, it only correctly determines whether Lyme antibodies are present 45% of the time. At least 35% of the patients told that they do not have Lyme Disease because their ELISA test came back negative, actually do have Lyme Disease. This is called a false negative. That is to say, that the ELISA will miss over 1/3 of the cases.

Additionally, our bodies do not produce enough antibodies to register on an ELISA screen for up to eight weeks after the onset of infection. So, to be sure that you have the best chance of an accurate test you must wait 8 weeks.
If you've been infected and you wait 8 weeks to be tested and then another week or two for results, you can experience some very serious symptoms.
If not caught early, the infection may then spread to many other parts of the body. This can occur over a period of days, affecting the central nervous system (brain), the peripheral nervous system (nerves), the cardiovascular system (causing pericarditis and/or 2^nd or 3^rd degree heart block and possible death if not treated immediately), the liver (causing mild hepatitis), the eyes (causing conjunctivitis). and the muscles and joints (causing migrating swelling, tenderness, and/or pain). The typical constellation of symptoms associated with disseminated Lyme disease may include severe fatigue with a need for naps during the day, low grade fevers, muscle and joint pains, sleep disturbance, irritability, headaches, light or sound sensitivity, sharp stabbing or shooting pains, and/or numbness and tingling.
When Lyme disease first affects the nervous system, one may see symptoms of meningitis, encephalitis, or cranial neuritis.
Trust me, you do not want to wait for tests.

Why be concerned if you don't get a rash? Well, this one is simple. The well-known rash only occurs in up to 50% of people with Lyme. Or, 50% of the patients never develop a rash. Clearly, the lack of a rash cannot rule out Lyme Disease.

What happens if you delay treatment? Lyme is a disease that is best attacked early. If treated early, 95% of patients respond to antibiotic treatment. The other 5% are considered cases of "treatment failure." Treatment failure rates increase to 62% or higher as the length of time before treatment begins expands. Delayed or inadequate treatment can lead to serious chronic problems with your brain, your heart, your joints, your nervous system and more.

As someone who is now living with Dysautonomia (my body no longer properly regulates my heart rate, my breathing, my digestion, my body temperature, etc.) and Chronic Inflammatory Demyelinating Polyradiculoneuropathy, or CIDP, (similar to MS, but the nerve damage is occurring outside of the brain), I can heartily attest that the risks of going untreated far outweigh the risks of a few weeks of antibiotics.

If you know you've been bitten by a tick, don't wait. Demand a prophylactic course of 4 weeks of doxycycline (amoxicillin for children under 8.) It can save your life.

Disclaimer: I am not a doctor. I am not, nor will I ever likely, play a doctor on TV. I'm simply a layperson who has had to learn a lot in order to advocate for her own health. Please do your own research and talk to doctors whom you feel are respecting you as a patient and fellow sentient being in order to make the most informed decisions for yourself or your loved ones.

(1) Bakken LL, Callister SM, Wand PJ, Schell RF. Interlaboratory comparison of test results for detection of Lyme disease by 516 participants in the Wisconsin State laboratory of hygiene/College of American Pathologists proficiency testing program. J Clin Microbiol 1997; 35: 537-543.

Welome to BostonLyme

2009-07-06T11:01:00.001-07:00

Welcome to BostonLyme. My name is Allison and I live with some very debilitating effects of having contracted Lyme Disease and gone for years without a diagnosis. I live in Boston. Lyme Disease is not a rural or suburban disease. It is everywhere. Yet, when I seek out resources such as caregivers and support groups, I must travel outside of the city. Hence, this effort to engage our urban neighbors. We need to protect ourselves, too. So, Boston, let's educate ourselves!

When I became sick and went to the doctors to find out what was wrong, I had no idea of the difficult journey ahead of me. A journey that includes fighting to get testing, fighting to get acknowledged even after a definitively positive test, and a continuing fight to get needed treatment. As my health declines, my experience has been witnessed by friends and loved ones. At first we thought my case must be an abberation. Eventually, it became evident that tens of thousands of people have the same story. We are so shocked by what we've seen that we're determined to educate others.

We are sponsoring a panel discussion and information-sharing reception after the August 9th showing of Under Our Skin at the MFA. Please join us to discuss how to prevent Lyme Disease, get treatment if you've been bitten, recognize the signs if you are mysteriously ill, and how to support legislation to protect doctors and fund research.

In the posts that follow, I will share news about the details of our Lyme awareness event, along with my experiences and what I've learned about Lyme and our health care industry. Please post questions, information you'd like to share and/or your stories in the comments.

It is my hope to not only have a successful event on August 9th, but to create a venue for ongoing information and support for those in Boston suffering from or caring for someone with Lyme. So, please join us.