That is great that your PCP diagnosed you and is trying to treat you. Unfortunately, LLMDs don't use Doxy for late stage Lyme because it somehow encourages the spirochetes to form cysts to hide from it. (It is an excellent choice right after a bite or a rash.)
Definitely ask for Bartonella tests, at IGeneX if possible. It is called b.henselae. It is usually treated with Rifampin or Levaquin (levofloxacin). Bartonella with Lyme is known to make the neuro and gut symptoms of Lyme worse.
Here is the ILADS treatment guidelines page that Jackie referred to. You might print these out and read them, then go over them with your doc to see what to do next.
http://www.ilads.org/lyme_disease/treatment_guidelines.html
Glad you posted! Let us know how it goes.
Hi,
Neurological Lyme is usually bartonella. In that case it is a different antibiotic, I am using levofloxin, sorry if spelled wrong. I had the herxing reaction every 4 weeks when first starting, now it is more spread out. It does get worse before getting better, your doc was right about being glad for the reaction. Most LLMD will start treating you according to your symptoms until co-infection tests come back so if you can't go to an LLMD, ask your doc for the other antibiotic. Google bartonella Lyme for symptoms first to make sure but it sounds like that to me in my non medical opinion.
Keep us posted.
Is your doc openminded enough to read the ILADS website for Burrascano's treatment guidelines? It could give the doc enough of a road map to test you for co-infections and also to know what OTHER meds could be used against Lyme.
I have read that doxy is effective only in the early stages, and not so effective against the cystic form that the Lyme bacteria adopt to protect themselves from your immune system and antibiotics.
Those are the two points I would hit with the doc: (1) what co-infections you might have and (2) what other meds to treat with besides doxy.
Good luck, let us know what happens -- hang in there -- !