Have a quick question - I went to a rheumatologist in NY who I thought was a LLMD, but he seemed to be more of a rheum who stumbled into treating a handful of Lyme patients.
Anyways, he didn't think that co-infections were a problem for me (sort of a red flag, because I've had Lyme for at least 2.5 years now) and he told me he wanted me to treat the Lyme straight out.
Here's what he prescribed:
Ampicillin (500mg 2x day) Probenical(sp?) 500 mg a day
He said the second drug, which I can't completely make out on my prescription, would help the ampicillin absorb in my bloodstream.
Here's my problem. I've been seeing a great integrative doc who's not officially an "LLMD" but she's very Lyme open, but I felt that she was treating me a little conservatively at 200mg doxy a day for the past three months. I wanted to see an LLMD, but couldn't afford it and ended up seeing this guy cause he takes insurance.
He wasn't totally bad, he was nice and he spent a lot of time with me, but he didn't seem totally on board with ILADS guidelines and he also expressed some mild skepticism as to the veracity of my Igenex tests (A clinical dx is sort of out for me because I have somewhat atypical Lyme symptoms).
Is anyone here on a monotherapy similar to the one this doc recommend? Any help would be much appreciated.
Posts: 55 | From New York | Registered: Nov 2008
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
Taina... I believe you are being under-dosed by All of those you've seen so far...IF those dosings are accurate.
1st off, 100mg b.i.d. (twice a day) of "doxy" is for Early Lyme. It's the IDSA level... which everyone here- & LLMDs- know is not enough for late-stage Lyme.
Switching to a penicillin IS a good idea, but ORAL?? If you take Ampicillun, it needs to be taken every SIX hours (see Dr. Burrascano's Guidelines). It's 1/2-life sucks.
Adding Probenecid is a very good idea & can mean reducing the dosing to every 8 hours (12 for amoxy;). What it DOES is to keep the body from filtering out/ excreteing the abx as quickly, so the antibiotic blood (serum) levels stay higher.
What PUZZles me is the dose. You usually take a penicillun drug at 2 grams per day (2,000mg) for Lyme, & build from There. Are you very petite?
Still, 1/2 a gram (500mg? 1 capsule/caplet?) twice a Day just doesn't have nearly the punch to effectively kill (lyse) the BB spirochetes dispersed tur your body.
In fact, it can actually HURT, as treating at that lower level will allow the Lyme bacteria to adjust to it, become antibiotic-resistant to an otherwise very useful 'cell wall drug'. Gosh... I'd get a 2nd opinion!
Most LLMDs use either oral amoxicillun ("amoxy") OR I.M. Bicillun LA (intra-muscular shots of 'benzathine penicillun') every 2 or 3 days, when they go the penicillun protocol route.
You really should see a 'Real' LLMD. Puttering around at low oral abx doses is a disaster in the long run, when trying to battle Lyme.
At the very LEAST, print off a copy of the 2008 (Dr B) guidelines and put in a sleeve & give to your doctor as a freindly gesture for reference. (Sounds like he needs to familiarize himself with ILADS-level abx dosings.)
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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posted
Thanks for the heads up, Kete-tracker. I'm not abnormally petite, but I am short. I just re-read Dr. B's guidelines though, and I can see what you mean.
I'm disappointed because I thought that I might be able to finally see a doctor who was Lyme literate and took insurance. Now I feel like I'm back to square one.
I was frustrated as well, because the doctor said he'd never seen a case like mine, in which there was very little debilitating fatigue or neuro involvement. I have sort of just considered myself lucky thus far that I didn't have those symptoms, now I'm questioning the diagnosis.
Just a quick refresher on my IGENEX test, I had
IGM 23-25 IND 31 ++++ 39 IND 41 + 83-93 +
IGG 41+
I also have a CD-57 of about 60.
Does anyone think I'm barking up the wrong tree here? The doc seemed like he changed his mind halfway through - at first he was all like, yes, you have sero-positive tests. But then at the end, he sent me for additional testing at Stonybrook.
I know I've been over this stuff with Lymenet people before, but can someone send me some reassurance?
Posts: 55 | From New York | Registered: Nov 2008
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posted
Sorry, forgot to mention my main symptoms are migratory arthritis in the hands, wrists, knees, etc., almost constant nausea, headaches daily, and an onset involving fever, sore throat, stiff neck. I also have chronic hives.
Posts: 55 | From New York | Registered: Nov 2008
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Anyone have any recommendations for me on meds? If I don't have co-infections, what would you recommend?
Posts: 55 | From New York | Registered: Nov 2008
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If you take Ampicillun, it needs to be taken every SIX hours (see Dr. Burrascano's Guidelines). It's 1/2-life sucks. 
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