Saturday, August 7, 2010

Who Knew? The Feds.

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?

Sunday, August 1, 2010

MA Protects Physicians Who Treat Lyme

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)

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.

Monday, July 26, 2010

Beast of Burden

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.

Monday, July 5, 2010

Lyme is a 4-Letter Word

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.

Friday, June 25, 2010

Bacterial Disease, Not A Crayon

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.

Thursday, June 10, 2010

Action Alert: Protect MA Physicians!

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!


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!

  1. 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.
  2. 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.
  3. It would also be helpful to send a copy of your letter to your own State Senator and State Representative (find yours at: ), 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.
  4. Trouble emailing or using the online form?
    Simply email a copy to 

    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:

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.


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.


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.

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 with the word ‘TEMPLATE’ in the subject field.

Friday, May 21, 2010

My Diagnosis Story

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.