Monday, March 29, 2010

Of Lice and Lyme

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!

Thursday, March 25, 2010

Dear Mr.'s Stiller and Letterman

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.

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

Its good to be back on track.

Wednesday, March 24, 2010

BostonLyme Support Group Redux

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.

Tuesday, March 23, 2010

The Minnesota Solution

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.

Monday, March 22, 2010

Pure Conjecture

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

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.

Wednesday, March 17, 2010

Bummer

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.

Tuesday, March 16, 2010

Why Are We Being Denied?

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?

Thursday, March 11, 2010

Mourning Mornings

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.

Tuesday, March 9, 2010

Lyme Guideline Limbo

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.

Monday, March 1, 2010

Burden of Proof

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.