Monday, November 30, 2009

If I make it through December...

Thanksgiving has come and gone. I've officially been sick for over two years now. It's dark, even in the daytime. I'm tired and I ache and I have so so so many pills to take, not to mention the daily IV infusions.

Every year I think that if I can just make it through December...

Friday, November 20, 2009

Doxy, ceftriaxone, plaquenil

I've been taking my entire daily dose of doxycycline (400 mg) at once, in the morning, with breakfast. And it's going pretty good so far! Yesterday I didn't have enough to eat, and I was pretty nauseated for a little while, but it passed.

And I'm not getting the weird side effects from the ceftriaxone in the evening. So perhaps it was just the doxy + ceftriaxone at the same time that was giving me grief.

Finally, I'm still waiting to hear back from my LLMD regarding my questions about Plaquenil.

Monday, November 16, 2009

Experimentation and confusion

Just a few items of note on this very rainy Monday.

1) After stopping all antibiotics for three days to re-boot my system, I re-started the IV ceftriaxone (made by Wockhardt). None of the previously bothersome symptoms appeared. Huh. So perhaps I do not need to switch to the more expensive Sandoz-made ceftriaxone.

2) This morning I re-started doxycycline. I tried taking all 400 mg in one dose. I'd previously feared that this would lead to extreme nausea and vomiting. However, apart from some very mild stomach discomfort (which could be attributed to my breakfast of strong coffee), I was fine. Perhaps the sucralfate is helping? Or perhaps I'm just a morning doxy person? Weird.

3) I just found out that new research indicates that Plaquenil does not kill the cyst form of the Lyme bacteria. Indeed, when introduced it can actually encourage the bacteria to seek protection in the cystic form. I'll need to talk to my doctor to find out if I should stay on the Flagyl or maybe switch to Tindamax or some other anti-cyst antibiotic, as well as if I should take the Plaquenil at all.

Unfortunately, I don't know much about this new research beyond what I just wrote. I'm hoping to find out more in the next few days.

Friday, November 13, 2009

Report from LLMD visit

I haven't updated much in the last week or two, mostly because I was trying to figure out what the heck was going on with my meds. On October 30, I started doxycycline and switched from one generic brand of ceftriaxone (Rocephin) to another generic brand. Two variables! Pesky.

Headache, nausea, chest pain, stomach pain, vomiting, tight throat, excessive saliva production. It was a regular laugh riot.

So I tried eliminating one of the two suspects for a couple of days to figure out which might be causing my troubles. Unfortunately, my experiments did not produce reliable, repeatable data. Sometimes I'd still feel horrible. Sometimes I'd be just fine. No rhyme or reason.

This was the riddle I presented to my LLMD today. We have a proposed solution. First, I'm going to switch from the new generic ceftriaxone (made by Wockhardt) to the generic ceftriaxone I'd been using previously (made by Sandoz). It's possible that a binder or filler in the powder is giving me grief. I won't get the Sandoz-made kind until next week, and it's going to cost nearly twice as much.

As for the doxycycline, we're looking at a multiphase approach. First, I'm going to start taking sucralfate to protect my stomach and esophagus. One 1 gram pill, four times a day. Fun. But one of it's most common side effects is bezoar formation. And that's just funny.

Then I'm going to try taking all 400 mg of doxy at one time, in the morning. (The doxy never bothered me in the morning, only if I took it after, say, 4 PM.) If this works, great.

It probably won't work. Because 400 mg of oral doxy is a lot at once, and will likely cause vomiting. Still, I'm going to try it. And if it doesn't work, then I'll go back to 200 mg in the morning and 200 mg in the evening. And we'll see if that works. Hopefully the sucralfate will do it's thing and all my troubles will vanish. Ha. Ha. Ha.

The final medication change I'm making is that I'm going to say good-bye to my longtime friend Flagyl. We had some good times, but it's just been a while and I think it's time to move on. It's not you, Flagyl. It's me. I'm sorry. It's been eleven months, and I think I need something new and fresh in my life. The Lyme bacteria aren't afraid of you anymore. (Read: Resistance to Flagyl might be building and it's time to switch to a different drug.)

I'm going to start Plaquenil, 200 mg, twice a day. It acts against the cyst form of Lyme. Additionally, it can lower cellular acid levels, which makes doxycycline more effective. Score! And one of it's

The downside is that it can cause retinitis, so I'll have to get an eye exam every four months to make sure I'm all good. Similarly, I get monthly blood work done to make sure that my body is handling the other drugs OK. This month my labs were simply beautiful. Not a number out of place.

Saturday, November 7, 2009

Sunday, November 1, 2009

Re: Jinxing

To answer last Thursday's question:

Yes.

To be fair, I just started doxycycline on Friday, and am clearly sinking into Herx Mode. Blah.

My mood is unstable, fatigue is crushing, and I'm having olfactory hallucinations again. Usually my olfactory hallunations are of cigarette smoke. But today? Pot roast. It totally smells like someone is cooking pot roast. And I can pretty much guarantee that no one in this house is smoking cigarettes or cooking meat.