Wednesday, February 18, 2009

A quick update

Well, I'm now a poster child for the Buhner Protocol, and not in a good way. My liver stats are looking quite wonderful these days - it took over a month-and-a-half for the spike caused by the Buhner herbs (one or more of knotweed, andrographis, cat's claw, sarsaparilla, eleuthero) used at full dose to get back in the normal range. I do believe it was the herbs, as the timing coincided perfectly, both on the upswing, and then the recovery.

Because of the happy liver I was able to complete a 30 day course of Diflucan. I didn't get as much of an obvious flare up as I expected. On the fifth day I felt it pretty strong - neuro and fatigue - but it passed. Through the month, I alternated between many good, and some VERY good days, and some not too good. The not goods' were fatigue lurking if I tried to do too much, then WHAM. And same old issues with smells, blurry vision. I'd say not as irritable as usual (my wife may not agree :).

And no crying, thank goodness. I think it's the tetracycline that does that. Reminds me of that scene from the movie Bedazzled (the 2000 remake with Brendan Fraser) where he's the sensitive guy on the beach, and every time he looks at the sunset he breaks into tears because it's so beautiful. He ends up choking out through the tears "Aw, when is that darn thing gonna set!?" Well, that's me on tetracycline :)

I am on a ten day break, and then I start something new. A month of Ceftin and Biaxin. I imagine eventually I'll return to tetracycline, and perhaps even Mepron, but for now I think my doc is exploring how I'll react to something new. There are a lot of potentially useful combinations that I've never been exposed to.

Perhaps the diflucan was doing quite a bit. 24 hours after I stopped I began a day and a half of pretty nasty neuro stuff - the anxiety, insomnia, sensitivity to smells, blurred vision. It hasn't been that bad in a month or more. Interesting... Fortunately it's gone for now, and I feel pretty "normal".

Thursday, February 12, 2009

CT Bill HB-6200

So, with the prior post as a lead-in, I think you get the picture that I'm no political activist. But I am concerned about potentially losing my lyme doc due to flat-earth "scientists", epitomized by IDSA types, who say that chronic lyme does not, cannot exist. Aside from leaving the ill untreated, what this position implies about the patients is arrogant and insulting at the very least.

I recently learned of Connecticut Bill HB-6200: AN ACT CONCERNING THE USE OF LONG-TERM ANTIBIOTICS FOR THE TREATMENT OF LYME DISEASE. It's just been proposed, and is being voted on probably next week by the Public Health Committee of the Connecticut General Assembly.

The gist of the bill is that lyme docs will be able to continue to prescribe long-term antibiotics to patients they've clinically diagnosed with lyme disease. They'll be safe from IDSA, CDC, and insurance company legal harassment.

I felt strongly enough about it to send this letter (below) as an email to my state rep and senator, as well as the chairs of the Public Health Committee, and several members who were involved in the sponsorship of the bill. I urge you to do the same. This bill is in it's infancy, and has a long road before it could become law. The IDSA-types spend a lot of time and money lobbying to have stuff like this killed. I'm hopeful that one small voice can make a difference. Here are links to all the email addresses of members of the CT House and Senate.

My name is Joe __________. I live in ___ _______, CT, and I have Chronic
Lyme Disease.

I just learned of the existence of this bill, and am writing in
support of it. This is a very important bill, and I hope it's passed
into law quickly.

Until I was bit by a tick in July 2007, I lived an active life, as
husband and father, and primary wage earner in my family. I worked as
a computer programmer for a financial services firm in NYC. In my
free time I enjoyed hiking and backpacking.

I'm slowly getting better, but 18 months later I still can't work, or
hike, and I still rely on my family to assist me daily. The sole
reason I'm improving at all is that I'm receiving long-term antibiotic

I've struggled with two issues during this period.

First, lyme itself. The symptoms are disabling and nasty, ranging
from extreme fatigue to paralysis of limbs and face, to inability to
walk, talk, think clearly. I never paid much attention, as I figured
it could never happen to me, and lyme's easy to get rid of with three
weeks of antibiotics, right?

Second, and unfortunately, worse than the lyme itself, is the
controversy surrounding it. It's not enough that we're still learning
about the disease, and how to treat it. But we also have the IDSA
proclaiming that there's nothing to learn. That lyme is trivially
easy to cure. And worst of all they're not content to let others have
their view, but instead act aggressively to bring legal action against
any doctor who retains an open mind on the subject.

Passage of this bill won't resolve this controversy. But it will at
the very least ensure that patients like me won't have their only hope
for eventual remission and healing legislated away. It will protect
the doctors who actually look at, and listen to their patients. These
doctors aren't academics working with statistics. They see very, very
sick patients every day. According to the IDSA, these doctors are
wrong to treat us. The IDSA is, of course, also saying that all these
patients aren't really sick.

It's not "drug-seeking behavior". It's not malingering. It's not
long-standing psychological issues. It's not "all in our heads".

I hear continually about the dangers of long-term antibiotics. Though
they're routinely prescribed for acne. And if they cured something
horrible, like cancer, or MS, you can bet we'd use them. Well,
untreated chronic lyme *is* horrible.

Please help. During my illness I have met many other people like me.
We aren't any different from you, except that we got sick with a
controversial disease. We just want our lives back, and to protect
the few caring doctors that are our only hope for recovery.

Thank you for reading.

Lyme wars: what can I do?

I've been reading about LymeMD's legal troubles, and it concerns me. Here's yet another case of a good doctor being brought up on frivolous charges by the state medical board (Maryland in this case). There's a very good chance that this doctor will at some point no longer be able to practice, or at least to see Lyme patients.

I've had some really excellent days sprinkled into a month of generally feeling pretty good. This is unprecedented. I still have some issues, but I feel like I'm actually getting well again. Before we break out the champagne and confetti, I do realize that my lyme doc may put me on a different drug (currently on diflucan) in a few weeks, and it could stir the lyme beasties again. I don't know how much I should expect this to last, but for now I'll take it.

So, putting those two thoughts together: where would I be today if not for my LLMD? What hope would I have for a full recovery if I called to schedule my next appointment and was told he could no longer see me? I couldn't imagine a worse scenario. Lyme is nasty. Being caught up in the middle of the lyme wars, and getting no treatment, and being told I'm crazy and just have to live with it, is a whole lot worse.

I've never been interested in political debate, and don't feel there's a lot I can do within a cumbersome governmental and legal system to effect change. But I did get a lesson on how effective one person can be years ago when I took my Boy Scout son to a town meeting as part of his work on a merit badge.

It just so happened that the meeting the month before was a big one, dealing with plans to spend a lot of money to make changes to the town green. A year earlier the side of the green with lots of shops had been repaved with cobblestones, nice lighting added, parking reworked. It was nicely done. This proposal was to do the same for the "other" side of the green, which has a different flavor - not many shops, mostly churches, law offices, etc.

There were many people that were in favor of this proposal, and a lot of planning work had been done, and presented. It was a shoo-in. This night's meeting was just the follow up, hearing one or two more details, and then the expected all-in-favor vote.

Living under the rock that I call home, I knew nothing about any of this. I was just trying to be a good dad, taking my son to a town meeting, explaining procedure to him and such. When I saw how much money they were planning to spend, I muttered "wow, that's crazy". My son nudged me and said "speak up!". So, after considering a moment, I stood up and offered my opinion, as public comments were welcome. I sat down, and some other guy stood up and said, "yeah, what he said". And that was it. Everyone came last month and spoke in favor. They didn't come to this meeting.

A few minutes later, the proposal was voted down. I was absolutely stunned. I still think it was too much money to spend for that work, but I also think it was a failure of government that my few relatively uninformed words could have such effect, especially when there were so many in favor.

I am reminded of this every time I think my voice carries no weight. And every time I drive through the village green :)

This post is already quite long, so look for another one shortly showing where all this rambling led me.