Sunday, January 25, 2009

Under Our Skin

Time for a quick update. My liver readings are back in range - AST: mid 30s, ALT: mid 80s - so I'm able to resume medication. I started diflucan a little over a week ago. This is a one-month course, without tetracycline this time. So, if there are any organ problems, it'll be easy to tell who the culprit is. I'm still only taking milk thistle and NAC for liver function, and staying off the Buhner herbs completely.

I've had a couple of symptom flare-ups since I started the diflucan, but not the severity I was expecting. Good (I'm getting better)? Or bad (drugs not working)? Who knows. Probably neither, as I still have a low-level of all the usual problems. Especially sensitivity to odors. It seems like I'm "not right" unless I'm either breathing fresh air from outdoors, or in my bedroom with the heavy duty air purifier running. And it's too cold here in Connecticut to stay outside for too long...

I saw the documentary Under Our Skin yesterday at our local library. Very good! It should help those who are close to a lyme sufferer to understand a bit better. And for those recently infected, and getting their short course of abx from their GP... well, this will scare the heck out of them. Even though I expected it, the movie had quite an emotional impact on me.

Tuesday, January 13, 2009

Waitin' around

Not much has happened in the couple weeks since my last post, except that my liver readings are slowly coming down. I need to confer with my LLMD, but I imagine we'll wait another week or so before I get back on abx, as the enzymes are still higher than my (already-high) baseline.

For those keeping score at home, the last reading was January 5th: AST 38, ALT 128.

My LLMD is familiar with my high baseline of ALT between 70 and 110, and is comfortable treating and monitoring. But since there's no apparent explanation of last month's spike (I think it was the herbs, but still don't know WHY), he wants to make sure there's nothing else wrong with me.

So on his recommendation, I saw a liver specialist (gastroenterologist), who is not lyme-literate, and brushes off my well-documented chronic lyme history. He doesn't come out and say it, but I think he's of the school where "chronic lyme" doesn't exist. He's unwilling to accept that the lyme could be at all responsible for the fairly high baseline. "It's all in my head."

So the liver doc's testing for Wilson's Disease, which I could tell was a reach for him, but he felt he had to come up with something original, and not something imaginary with a host of made-up symptoms like lyme. Waste of time. But I'm playing along, for now. I'm willing to do the urine and blood tests, and I'll even get my eyes checked for K-F rings (I need an eye exam anyway). But the only way to completely rule out Wilson's is a liver biopsy. Ha ha, no thanks.

I still don't know why, but unfortunately everything points to at least one of the herbs being the culprit for the spike readings.

Interesting thing: I've been off meds for five weeks now, and I'm feeling better than usual - about 70%. So, is it the break from meds (no constant herxing), and/or did the herbs play a part?

My friend, and fellow lyme sufferer Chronic Triathlete turned me on to this great blog LymeMD. It's in my favorite blog list on the right. It's written by a LLMD in Maryland.

One thing this doc said that's interesting (and I paraphrase loosely) is the idea that perhaps we can *never* eradicate the lyme from intracellular spaces, so drugs that bust cysts and L forms may actually "harm", as it may only be the spirochete form that causes most of the symptoms. Treat to get under control, then let sleeping dogs lie, with a bit of abx in the bloodstream to kill any bacteria morphing into spirochetes.

Gotta ask my LLMD's opinion of that. I have a feeling this is his unspoken approach as well. No cure, but shooting for long periods of remission, and minimal relapses.

In other news, my disability appeal has been denied. According to the insurance company (and their ID doctor) there's been nothing wrong with me all this time. ["There is no chronic lyme"]

Not sure where to go from here. I hate, hate trying to persuade obstinate faceless entities that have their interests above that of their clients. And talking to, and paying, attorneys is no fun either. Even though I disagree with his political views, what I need right now is an Alan Shore (Boston Legal). Someone smart and passionate, who understands that there are many lyme sufferers and literally all are being treated unjustly. And who'll take the case pro bono for a client without a job :)

Yes, my employer finally let me go. They've been patient. I've not worked since September 2007. They say I can get rehired when I get well. And ironically, this week I've felt better than ever, almost (but not quite) able to go to work. Ever pragmatic (not pessimistic), I don't expect it to be all roses going forward. But I do seem to be improving a bit, and I've been enjoying it.