LymeNet Flash: drug induced peripheral neuropathy

This is topic drug induced peripheral neuropathy in forum Medical Questions at LymeNet Flash.

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Posted by zipzip (Member # 6226) on :

i took 3 weeks of plaq/biaxin and developed peripheral neuropathy (cranial/sinus swelling, heavy tingling, and a little bit of sensitive teeth and tmj).

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...

p.s. these symptoms are the worst

Posted by tjtighe (Member # 4057) on :

My ears have tingled off and on almost every day since I am on doxy.

Posted by monkeyshines (Member # 6406) on :

While I had some numbness (in one hand) many years before I became sick enough to try to get a diagnosis, I developed much more neuropathy after being on abx for some time. And my worst neuro symptoms showed up recently on rocephin (though they've calmed down again at week 10).

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.

I hope others have some insights on this. I always assumed it would go away with my other symptoms once I get well!

Posted by zipzip (Member # 6226) on :

hey,

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....

any suggestions, appreciated...

Posted by janinco (Member # 6278) on :

I have been trying to get an answer to the cause of my peripheral neuropathy since May. My neurologist calls it neuroinflammation and thinks it could be caused by a neurotoxin. The only source I know of is a thyroid medication I took last fall and early winter. It gave me excrutiating headaches, but at the time we thought it was Epstein-Barr causing the reaction. Then my husband who is never sick tried a couple of doses and got the same headache.

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.

Jan

Posted by tjtighe (Member # 4057) on :

I know a few people who have been successfully treated for neuropathy with neurotin.

Posted by rdcallen (Member # 3987) on :

Yep, my head/face/eye/jaw/teeth neuropathy responded significantly to neurontin. I had it before treatment but it got a lot worse while on treatment. I just assumed like everything else it was herx related. Finally got brave and asked the doctor for the neurontin.

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

[This message has been edited by rdcallen (edited 08 November 2004).]