Posted 5/10/2017 8:47 AM (GMT -5)
Thank you Traveler! I know, and it is in the backlog. Rifampicin is prescribed for me along with tetracycline and azytromycin, but...
... I have severe abdominal pain and some inflammation in the intestines which is not Crohn's disease -since the start of my lyme misery-, and therefore I usually have to stop ABX treatment due to this. ok, I endure pain, but this become so-so severe sooner or later (I cannot eat, cannot drink due to pain) in the treatment that I have to stop. And then my symptoms are flaring up within a few days, or a week and become worse and worse immediately until I am 100% human pain, and become non-functioning. Then I restart ABX, it helps quite quickly and neuro issues decrease, and I start to feel better until the abdominal pain become once again unbearable... This is what I do now for 1,5year. So, I don't take the risk adding another gut-killer antibiotic to the mix until I cannot feel that the GI is prepared for that.
The ABX I take is macrolid (azy, or clarythromycin) alone, or with tetracycline.
The reason I asked about the symptoms is that bart could fit into the picture, but these symptoms started and became as severe, when I got a GI infection 1,5years ago, which turned out to be campylobacter jejuni. From that day I am having these symptoms which decreases when I take macrolid - which is also the drug of choice for campylobacter infection. It would be logical to think that campylobacter persists and it causes these symptoms, but as I read the literature, it does not persist, or only in immunocompromised HIV patients, but causes not so much neuro issues, but rather GI, or meningitis, or Guillain-Barré syndrome. And the test became negative for campylobacter within a few weeks at that time. Interestingly, this march I had a severe neuro-flare-up and made another test and it also revealed campylobacter too. After two weeks the test was negative... But I have severe symptoms nowadays too.
since march I took azy, and tetracycline, and started to feel better, but two weeks earlier I had to stop again... One week later symptom worsening. Two days ago I started clarythromycin. Today I start to feel better again. I don't understand what to do, and what causes this... My LLMD says it is probably not borrelia, but she has no clue. She thinks I should try treatment for bart, but she is not convinced about it eather.
What do you think?