Saturday, September 20, 2008

What I wish I'd known earlier

Controversial treatment protocols
If you read my (not so) brief history, you'll see that I started out with my local doctor, who referred me to a local infectious disease doctor, etc. Lyme disease diagnosis and treatment is very controversial, with a clear dividing line between two groups.

The first group, epitomized by IDSA believe there aren't that many cases of the disease, and that it's always easily, completely curable with a short 3 week course of antibiotics. These doctors state that there is something called post-lyme syndrome. This is the "explanation" for why so many patients don't get better when "logic" says they should. The other rather glib explanation is that the patient may have been re-infected. Unfortunately tests are so unreliable as to make this sometimes difficult to refute. Or finally, that it's all in your head. And in my experience, these doctors offer no treatment for post-lyme, except perhaps anti-depressants (because after all, it's in your head).

Unless you're a lyme specialist, you're likely following these widely published treatment guidelines. The CDC backs this up, as do the major medical journals, and of course the insurance companies (because they end up having to pay less).

The second group, epitomized by ILADS, believe there are a staggering number of confirmed cases of the disease, and many more likely unreported or undiagnosed. Further, they believe the disease can be chronic, where treatment is very difficult, and a cure is not at all guaranteed.

They believe that lyme, as a spirochete (I guess pseudo-bacteria is the best word), goes through a life cycle, and that for part of that cycle it transforms into a cystic form. In this form it's almost completely unkillable by antibiotics. The cysts like to lay dormant out of the bloodstream, in the joints and in the brain.

This group also believes that in almost all cases where a person is infected with lyme, they're also infected with something else from the same tick - usually one or more of babesiosis, ehrlichiosis, or bartonella. With the possible exception of ehrlichia, there are no reliable tests for any of these, including lyme.

These doctors state that a 3-4 week antibiotic regimen shows an extremely high failure rate, with most patients never completely getting well, and having continued relapses, usually for years to come. They usually approach this problem by recommending a long-term regimen of antibiotics, sometimes oral, sometimes IV. Often the cocktail is switched up every so often, and the durations of the treatments designed to confuse, or break, lyme's normal lifecycle. I believe the view is that it makes no sense to treat for 3 weeks, sending most of the bacteria into hiding, and then stop just when they're due to morph back into killable spirochetes again.

ILADS consists of lyme specialists. It's my experience that IDSA folks think ILADS is mostly comprised of quacks, irresponsibly following very suspect protocols. It's also my absolutely undeniable personal experience that IDSA is completely misinformed, and is doing a horrible disservice to their patients. Under their care, many patients are undiagnosed, or untreated, or like me, treated initially, and then completely abandoned. I fully believe that with the IDSA treatment protocol, I will never recover.

So, anyway, there's this huge schism, and the patients are caught in the middle. You might ask why the lyme sufferer doesn't just google these facts immediately and go to the correct doctor? Several reasons, in my case.
  • You start off in many cases not knowing what you have, so you see your local GP.
  • Even if you know you have lyme, sometimes 3 weeks of antibiotics, if administered immediately, can do the trick (although there may be evidence to suggest that even this isn't true - that the lyme lies dormant in your body for years).
  • Your local medical community most often won't admit to lack of knowledge, even to themselves, so they'll send you on a wild goose chase, rationally explaining all the reasons why you need a neurologist, rheumatologist, cardiologist, psychiatrist, infectious disease specialist, etc.
  • In my case the IDSA, or otherwise lyme-inexperienced doctors actually told me to avoid ILADS, as they were quacks. Some expressly told me this, most others implied it with their silence.
  • You've got chronic lyme - you don't handle conflict and stress well, and your analytic and decision making skills are shot.
  • Lyme literate doctors very often are quite expensive, don't take insurance, and require a 2-3 month wait to get an appointment, and at this point, you either don't think you're that sick yet, or you do, but you have no income anymore.
Conclusion: If you have lyme, or have reason to suspect you have lyme, run, don't walk, to a respected lyme literate doctor. I truly believe this is the only chance of fully recovering from chronic lyme. Don't wait, don't waste valuable months waiting for your body to overcome post-lyme. You should actively be getting treatment during this time.

Be true to yourself
For me at least, since I got lyme disease, I second-guess every one of my opinions and actions. I'm sure it's to do with the neurological havoc being wreaked by the bugs. But knowing that doesn't really help a lot.

Lyme presents with a vast number of symptoms, some of them ever-shifting. Like today your left knee will hurt quite a lot. Tomorrow, not so much, but your neck, or right elbow, or whatever will be extremely painful. Same thing with the brain stuff. Sometimes I can't think straight, or sleep. Other times I'm just really, really slow, but not jangled up. Other times, I almost seem normal - that is until I try to do the smallest thing, like do a load of laundry, run a short errand, help prepare a meal, etc.

So, not a week goes by that one part of one day I don't say to myself "hmm, see, I could have been working today - why aren't I trying harder to get back to work?" But the gains are very short-lived, and the next day it's all I can do to get breakfast and sit on the sofa all day.

This second-guessing also applies to what the doctors are telling you. So, when you don't feel better, but they tell you just to wait, you don't know what to think. Then they start to look for other causes. Whoa, in my case I'm absolutely certain that I was normal (as anyone can really be called normal), and then got lyme. But for those who didn't get a rash, the diagnosis can be very muddied by the IDSA doctors, tests can be interpreted incorrectly, given improper significance, etc.

And as the patient, you don't know anything with any certainty. And then they start telling you it's all in your head, that you've got psychological problems. That's really hard to fight against, because at this point, they're not really talking directly to you anymore. They don't think you're competent to judge. So catch-22, they say you're crazy, so anything you say to refute is an example of your lunacy.

Conclusion: Do everything you can to keep grounded, remember who you are (were). Don't lose sight of the fact that you have a live bacteria hurting you, even when you can't think straight, when your doctors and even your family don't support you. Some days you'll be lucid. It comes and goes, so while it's there, take advantage of the opportunity to put things in their proper perspective.

Finding a doctor
When looking for a lyme literate doctor in your general area (you may have to be willing to travel a bit), get recommendations if at all possible. You may be able to get some from

I had about 4-5 names recommended by various people - home health nurses, friends whose friends had lyme, etc. (I live in Connecticut, so lymies aren't hard to find). A couple of these didn't "feel right" when calling to ask about appointments, treatment options, etc. Of the remaining three, we made appointments with two, several months in advance.

Neither doctor took insurance, but we could apply the bill to our out-of-network 70% of allowable with our insurance company. After our $1000 out-of-network deductible had been met. As you might expect, the allowable sometimes isn't very much compared to the cost, so we ended up paying a lot of all this ourselves.

We first went to see Dr. Raxlen, in New York City. He charged us $900 for the initial visit, plus another $1200 or so for lab work from some specialist labs - Igenex and Fry. He listened, and suggested a second neuropsych test from a lyme literate tester, among other things. We were all set to follow his advice, and undergo his course of treatment. We called to schedule the neuropsych test and it was $5500, and only $250 was covered by insurance!

So, we called Dr. Raxlen's office and left a message for someone to discuss other options, better explain the need for this, etc. It's now several months, about 5 phone calls, and 3 emails later, and we've not received any response whatsoever. We ended up getting copies of the expensive labs directly from the labs themselves, as we couldn't even get copies from Raxlen's office, even after we'd paid for them fully in advance. He just took our money and gave us no support at all. Not very reassuring, to say the least.

We were then lucky enough to hook up with Dr. Steven Phillips in Wilton, CT. Still quite expensive at $600 per hour, and takes no insurance. But he's been treating me for almost 8 weeks now, and it appears to be going well. And what's more, he's knowledgeable, sensible, practical, and responsive.

Conclusion: Not all lyme specialists are created equal. Be prepared to throw one out, even after careful screening.

Tread carefully with disability
I have long-term disability insurance through my (ex?) employer. But I think this applies to Social Security Disability as well.

My disability insurance paid out for a few months, and then they denied all future payments. We're appealing, but I believe there were a couple of key avoidable issues that caused the denial.
  • My original diagnosis and treatment by the infectious disease doctor, and subsequently being told to just wait for the post-lyme to resolve, caused it to appear to the insurance company that I wasn't pursuing any course of treatment. I wasn't, but only because I was told there was none, except time. It would have been difficult to handle this otherwise, as the ID doctor probably wouldn't have written a letter stating I was to do nothing. He would have referred me to a psychiatrist for anti-depressants, and perhaps that doctor could have written the appropriate letter. But since that treatment didn't make any sense, as it didn't address the lyme, I didn't pursue it. So, I didn't do what they said, and I didn't look busy enough.
  • I underwent a neuropsych test, partly to rule out other problems, like alzheimer's, and partly to prove the lyme case. The problem is that NP tests don't score lyme accurately, as they trigger a result of psychosomatic (all in your head) when encountering all the various lyme symptoms. So it's an invalid test for a lyme patient. Avoid it. The end result was that the NP test found me to be very high functioning, apart from the hypochondria (sigh), and no reason I couldn't get back to work. I specifically asked the doctors if the test would score accurately if I didn't have an episode during the test, and they assured me it was very sophisticated. Rubbish. So, by following the not-lyme-literate approach, and looking for all kinds of other imaginary causes, meaningless tests were performed. But their (meaningless) results go into the medical history, are presented to the insurance company, and are considered significant, especially if it's in the insurance company's favor.
Conclusion: The lyme literate approach early on would have eliminated both of these issues. I would have been undergoing constant treatment, not just "waiting". I wouldn't have had to submit to things like anti-depressants or psychotherapy which didn't address the root cause. And my current lyme literate doctor either wouldn't have scheduled a NP test in the first place, or if persuaded to, perhaps by the insurance company, would have used a (cheaper) lyme literate NP tester.

It's much more difficult to appeal and get back something that's been taken away, than it is to just act in such a way as to not lose it in the first place. And while the priority should be to get well, practicality forces us to deal with insurance companies and the fact of no income.

Proper testing
I've heard some folks say that the first thing they wished they had done differently was to get proper, specialized blood tests. Like the ones Dr. Raxlen ordered for me. But this may not be as important as one might think.

Dr. Phillips largely ignores those tests. He knows I have lyme because I had a rash, and because he recognizes all my symptoms. Sure the tests confirm it, but if they didn't (as they often don't), he would act no differently. Similarly, while I tested positive for babesia, there are 14 known strains of babesia, and it's only possible to test for one strain! So, a negative result doesn't mean a darn thing. So he treats as if the patient has babesia as well, which they very likely do.

I think in general, some LLMDs advocate testing play a purely confirmatory role. Primary diagnosis is clinical observation, and treatment is continued until some time (6 weeks or more - remember the lyme life cycle) after the patient appears completely healthy again.

Conclusion: Lots of expensive testing may not really matter. We'd like to be able to prove things conclusively, but with lyme and related infections we cannot yet do that.

Alternative medicine
I've always been skeptical of, or should I say analytical and cautiously open to, alternative healing, such as homeopathy, muscle testing, acupunture, reiki, etc. I'm actually extremely open to most of this, but I don't believe that most of the practitioners can do it effectively. After my recent experiences, I suspect that certain people have the ability - not a gift perhaps, something trainable. But they could probably use any technique as a vehicle and provide real benefit.

Conclusion: Seek out someone that can truly heal. While I'm going the antibiotic route for the lyme, my holistic doctor, Dr. Sean Diamond, DC, really helps me a lot. He is able to help minimize side effects from the many nasty drugs I take, as well as generally supporting the body functions so they're able to heal on their own, and ultimately what he does makes me feel better.

While everyone will have different needs and experiences, I hope some of this first-hand, learned-the-hard-way personal knowledge may help someone.

I'm very grateful that I've finally found doctors that can help. The world seems full of possibilities again.


Andrea Runyan said...

This is a great post that I hope many new Lyme patients will read.

You're right, it's extremely important to trust yourself. Doctors don't know what you're experiencing, you have much more information than they do about what you're feeling, so trust yourself!

Good point about how not everything shows up in tests.

Something else I wish I had known is that you can use the Buhner protocol while waiting for your LLMD appointment.

Also that the immune system is paramount--abx won't heal you, they'll just keep the infection at a manageable level for your immune system to handle. Lyme and coinfections often suppress the immune system, so it might help to use cat's claw, medicinal mushrooms, etc. for immune help (as described in Healing Lyme).

Joe said...

Yes, excellent point, which I'm just learning (too late for me). Pre-Buhner I didn't feel I would know what to tell someone who just got lyme, or thought they had lyme, except to make the appointment, beg some doxy or tetracycline from their GP to partially fill the gap, and then just wait, while watching the symptoms get worse and the lyme settle in for a nice siege.

I think you're right about the immune system. I strongly suspect we never completely get rid of the lyme, no matter what. So it's important to have the immune system strong enough to control the bit that remains after all the abx.