i have been off of it 3 weeks (on nothing right now) and it still hasn't let up. prior to the plaq/biaxin i had minor minor tinling and only fatigue and orthostatic intolerance (and a little gi here and there).

i also never had any neuro symptoms before starting abx 10 months ago (1.5 yrs undiagnosed with lyme to that point).

i was wondering whether anyone else had a similar experience and whether stopping the drug that caused the symptoms helped (i read on the nih website that drug induced neuropathy can take up to 8 weeks to clear) or whether these symptoms only resolved as abx treatment was continued.

also curious whether anyone else only started to have peripheral neuropathy AFTER starting abx treatment.

thanks, have a good weekend...

I always thought it was herxing-related, or the progression of the disease. I never thought about it being caused by the meds in a non-herx way.

this neuropathy is becoming worse and worse for me, my body is becoming numb, having chills and tingling/buzzing all over.

also had extreme pain on left side of face and sinuses for half the day for no apparent rhyme or reason.

the doctor who put me on the plaquenil won't return my phone calls (jerkoff) and my regular llmd doesn't have a clue as what to do???

thinking about going to an er but have no idea if they will be able to help me all....

The FDA won't make them test for foreign materials like heavy metals or other possible contaminants and I can't afford private testing, so we may never know for sure.

Later we found out that I had West Nile virus, and I thought maybe that was the cause, but all the other people I know who are recovering from it say they just have fatigue and weakness, not the numbness, tingling, electrical sensations, etc.

It drives me nuts...sometimes my whole face and throat will go numb, and then my torso. The skin on my arms and legs also loses sensation. I can still move the muscles, but it feels like someone shot me up with local anesthetic all over. I've had awful problems with my jaw but since it happens at the same time I think it's related.

The only real relief I seem to get is from using a natural antihistamine, an amino acid called histidine. I don't tolerate Benadry very well or I'd take that instead. It makes me wonder if it's an autoimmune response, either to a toxin or a viral infection or lyme, but I've had lyme symptoms for years and never had the neuropathy.

Hope you get some help. I don't think it's really dangerous in itself - at least my neurologist didn't think so. But it is important to track down what's causing it since those symptoms can be associated with demyelination and things like diabetic neuropathy.

Bring it up to your doctor about trying this drug.
Good luck. I know how unbearable this pain is.
CAthy