My Letter to MA Joint Committee on Health

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!

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:

1. Written Testimony NEED YOUR HELP WITH THIS ASAP – Details to follow
2. Attendance at the hearing
3. 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

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

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

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

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

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.

1. 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.
   
   
2. 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.
   
   
3. 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

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.