The go to CPN doc is Charles Stratton at Vanderbilt. His protocol: Amoxil, Doxy, Zithro, Flagyl and Rifampin, INH takes 2 years. The INH is toxic to the liver. I think, based on my experience that: Amoxil, Cipro, Rifampin and Flagyl may work. I use lower doses. Titers come down and Fibro symptoms may improve. Low dose Cipro has generally been tolerated but requires close watching. Has anyone had a response to similar combinations?
Hi Dr.
ReplyDeleteFirst off, thanks for this blog, I read it regularly. Its info is helpful as I forget to ask things when in your office.
Diagnosed with fibro many years ago, through your care, learned I also have Lyme and CPN. After my first month of Amox and Doxy I felt a surge in my energy level. However, now five months into it, the meds do not seem to affect me the way they used to. Could this be in my head, or do Lyme patients change out their meds over the course of their treatment?
I also feel the same with celebrex. The first week it worked, but now my pain level seems unaffected by the medicine.
Thanks.
Placebo effect? Since we can't culture Lyme. We don't know if can become resistant. Certanly I do change antibiotics programs. CPN seems to require a complex regimen of drugs and is very hard to kill. It is hard to say sometimes why drugs work or they don't. It never hurts to change if they are no longer working.
ReplyDeleteYes, thanks for raising such good questions on your blog. Very helpful. My fibro symptoms were the first to improve after several months on Zithro and Doxy and IM Bicillin, leaving cognitive and neurological symptoms largely unimproved. Then a Guillan Barre-like attack with hallucinations happened while taking Diflucan that stopped my treatment in its tracks. Porphyria perhaps?
ReplyDeleteI was curious to ask what you make of Dr. Stratton's explanation of obligatory secondary porphyria with Cpn die-off. In the online Cpn community (much info at cpnhelp.org), porphyria is considered to be just as important and prevalent (and even more of a danger) in treating Cpn as endotoxin reactions are. Patients desperately take measures to keep secondary porphyria in check as it is horrible (especially the psych symptoms) and can be fatal. Testing for porphyrins is reportedly difficult. I've heard conflicting reports on the reliability of labs that do more sensitive porphyrin testing.
How have you found best to deal with this in your patients with Cpn?