I've been on treatment for lyme for the past 9 months, my IDS is continuing my AB treatment for another 3 months (bringing it to a full year of antibiotics) but if I don't see any improvement by then - he has decided to take me off them and prescribe LDN for 6 months to see how I fair.
I've been on the following for the past 9 months:
- lymecycline (switched out after 6 months)
- cefuroxime (added after 3 months)
- malarone (added after 6 months)
My latest appointment last week, he decided to switch the cefuroxime for amoxicillin to try switch things up.
I also took and am continuing to take the following herbs/remedies:
- japanese knotweed
- cat's claw
- teasel root tincture
- whole leaf stevia extract
I've also ordered some serrapeptase and d-limonene. So I have really been doing everything on my side also to get better.
My problem is I've seen no improvement. But also, I've had zero reactions to the antibiotics. No herx, nothing. And they were pretty high doses too - like 2x to 4x the normal dose size. Honestly - I'd get more of a reaction to caffeine than my abx.
My IDS seems to know what he is doing and is the most knowledgeable specialist in my country, but he said that I should be at least seeing something happen by now. But it's as if I'm not taking anything. The only time I feel anything is on the days I take azithromycin when my stomach feels a bit queasy. Outside of that, I get about
my day as normal.
I've had CFS for 13 years. I don't remember ever being bit by a tick, but armin labs results showed I was positive for lyme and Ehrlichia/Anaplasma (but negative for bartonella). I don't have headaches or joint pain - never had. If it wasn't for the twitching (which to be fair has subsided a bit) - I'd think I didn't have lyme at all.
I'm not really sure what to do from here. My IDS is a really good guy, and I trust his ability. But after the next 3 months - it will be a year of treatment, with no changes and then my treatment will be over.
Do I just brush the idea of lyme to the side? Surely I should have had some sort of response (either positive or negative) by now?