After 8 long years, I'm finally diagnosed and have found a local doc in UT who is willing to treat me - at last!!! He's going to treat me with IV abx via a port, but is "researching" the best combo to start with. I'm allergic to cephalosporin abx (rocephin, etc.) so I'm thinking zithromax, mepron and possibly doxy.
Does this sound right? I've read Dr. B's guidlines, and other treatment guides, but you guys are the experts since you've lived through this. I know everyone is different and that treatment usually has to be tweaked, but I need a jumping off point. I have substantial CNS involvement.
Any advice is appreciated. I'm fortunate in that my doc listens to my opinion.
Thanks so much, Patti
Posted by migs (Member # 16496) on :
Glad you're getting treated but I can't help with your treatment options. I am still new and my Doxy/Flagyl seems to be slowly working.
I am sure someone here has blasted those two simultaneous.
BTW, my Lyme symptoms are clearing up and I am left with chronich headache and napping. Sound like Babesia to you? I have ruled out most other co-infections.
Posted by Patti C. (Member # 14516) on :
Hey Migs, thanks for the reply. I have chronic migraines too. Sometimes I nap constantly, and then I'll have insomnia for weeks. And other symptoms like fever/hot flashes, nausea, neuropathies, and typical Lyme sypmtoms. How longs have you been on abx treatment? Just wondering.
Patti
Posted by Hoosiers51 (Member # 15759) on :
I think Mepron and Doxy are not mixed well together; one lowers effectiveness of other. I would not mix them. Minocycline or Tetracycline may be a different story, but I am 90% sure Doxycycline and Mepron interact.
You could do Mepron, Zithromax, and maybe one of the following: Amoxicillin (high dose) or Bicillin shots if you are concerned with Lyme, Bactrim for Bartonella and/or Lyme (?) if you are not allergic to sulfa, Cipro if you are worried about Bartonella, Plaquenil to give the Mepron another anti-parasite boost. Those are some ideas I have heard of, used, or considered myself.
I would not add Doxy though, but ask your doc.
Right now I'm on Mepron, Zithro, Amox, Plaquenil, and thinking about adding Rifampin (do Rif with extreme caution with these drugs) or Bactrim. I have been on most of these individually though, so I know how they affect me. I would definitely add things slowly so that if you start to feel really toxic you will know what is causing it.
(for example, if you did what you suggested Mep/zith/doxy, it could make you feel horrible b/c of the interaction, but then maybe you would blame it on the Zithro....wouldn't want to do that!) So add things slowly, or otherwise see a good doc that would be able to tell you what is going on if you start all at once. But I think eventually (like, as soon as you can handle it) taking them all together is good. Obviously I think this, because I am doing it.
Expect a major herx with Mepron about 3-4 weeks in, and don't be scared by it. Progress on Mepron can be slow; you may not see results for 3 months at the minimum, if not longer. It is worth it though....it is one of the only drugs that made me a believer. I wouldn't be on this site or giving advice if I didn't believe these drugs help people with tick diseases. It is worth it.
Also, many recommend adding the herb Artemisiae to a babesia treatment plan, but I do not tolerate it because of an enzyme defect. I take extremely small doses of it, but for most people I suppose it works well.
Good luck.
Posted by sixgoofykids (Member # 11141) on :
I agree with Hoosiers - Mepron, Zith, Artemisia .... I'd use IM Bicillin with it and Plaquenil.
Plaquenil will help the zith to get to the intracellular bacteria better, will mildly bust cysts, and is anti-malarial. Bicillin gets the form that zith does not.
Good luck with your new treatment. Remember none of us are doctors.
Posted by summer23 (Member # 16193) on :
i was put on bactrim to treat lyme and babs
Posted by Patti C. (Member # 14516) on :
Thanks so much everyone!
I really need all of the "inside" info since my doc isn't really experienced in treating this. I was diagnosed by a great LLMD in another state, but he's closing his practice and must "hand off" my treatment to someone before I even get started. I've had a terrible time finding a doc who was even willing to work with my LLMD.
I know all of you aren't docs, but you all have more knowledge than most medical people.
So, if I start with Mepron, Zith and IM Bicillin that could be a good beginning treatment for LD, Babs and Bart, huh? I tried Plaquenil but I had horrible intestinal problems. Any suggestions to overcome this?
Any other info is greatly appreciated!
Patti
Posted by Rianna (Member # 11038) on :
Totally agrees IV Zith, Mepron, Artemisinin Gel
Use Rizol MU in DMSO for deep penetration from BiopureUS
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