The Doc Was In!

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

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

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.