Risk of taking Flagyl with Peripheral Neuropathy

Laker7491 said...
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Flagyl is also listed as a black box drug. It doesn't say it causes permanent neuropathy, but it does say to notify your doctor immediately if you have one of many symptoms, one is numbness and tingling. I'm not sure how I would know since I have that every day. I also called my pharmacist and asked what would happen since I already have that symptom, he had no idea.

The black box warning is for being carcinogenic in rats and mice.


For increasing blood flow - are you taking the herb Hawthorn or Japanese knotweed?

Georgia Hunter said...
Madisongrrl, when you think about neuropathy, think about exactly what went wrong. What you are saying happened to you is an autoimmune issue. That just doesn't affect neurons, there is a lot of things going wrong. Elite athletes, (I was one myself), often have pathway malfunctions due to nutrient imbalances caused from our immune response. Serum blood tests and even hair analysis often don't tell the entire story.

Do you have any other ideas as to things I should be looking at? Any specific tests/retests that you think would be helpful? Especially if it's a Labcorp test, because those free to me because of my job. Or any literature that I should be reading....

Maybe i'll try to start a new thread later tonight. I really need some new thoughts as to what to do.....

Laker7491 said...
Thanks Georgia, I'll order a hair test. I appreciate the information.

I'm having a hard time finding peer-reviewed literature about hair mineral analysis. I see my Lyme Literature functional medicine nurse on Friday. I'll ask for her opinion about.

Thanks madisongrrl for asking your nurse. I see my LLMD next week and will ask him but to be honest he doesn't seem to be up on things like this. I was very active too before I got sick and it scares me to death that I won't be able to do the things I love. I'm almost 60 so I feel the clock is ticking.

I understand completely how you feel about living like this for the next 30 to 40 years. The thought of having the level of pain I have had with my neuropathy for another 6 months to a year is more than I can stand. Right now the only thing that helps with the pain is medical marijuana and then it's because I fall asleep within 15 minutes of smoking it. Gabapentin keeps it at a somewhat tolerable level most of the time. I guess that's why I'm so anxious about taking Flagyl.

I know Flagyl is rated a black box drug because of it causing cancer in mice, but it also says to tell your doctor immediately if you have numbness and tingling. I have that all the time, so I'm not sure what that means for me. My doctor has no idea what drugs he prescribes are listed as black box drugs or what side effects they may cause. They don't list Black Box drugs on the informational sheet of your prescription. My Dr. wanted to give me Levaquin which is a black box drug and can cause permanent neuropathy, he told me he never had anyone have that problem but to me that means nothing. I could be the one it happens too. I'm just trying to prevent more damage from happening to me. So while a black box drug may not cause permanent side effects, it would be nice to know up front so you can determine what it means for you. I also understand everyone is different, but it's so frustrating trying to figure out if you should take it or not.

Denikeef, how long did your neuropathy last after stopping Flagyl? I take Sida now so I'm not sure if it's working or not.

Georgia Hunter said exercise would help with blood flow and as I understand it, it would help keep the neuropathy from occurring, but the only exercise I am able to do is walking around the house and restorative yoga, neither one is cardio.

I'm thinking that maybe I should start reaching herbal protocals.

Thanks everyone, I really appreciate it.

Laker - regarding exercise and blood flow - even walking...and stretching exercises will increase your blood flow.

My neuropathy also greatly flares when I herx.


This is with Rifampin and biaxin...or Rifampin and mino.

it's not from a specific antibiotic in my case...but related to my herx.

BBM - when I first started taking minocycline, I did some reading on side effects and I didn't see anything about peripheral neuropathy.

The link that was posted (madisongrrl) a few posts back does suggest an autoimmune trigger to the peripheral neuropathy,

I'm reading it "What you are saying happened to you is an autoimmune issue. That just doesn't affect neurons". I agree that herxing causes it but autoimmunity is often a part of that so I'm confused what you're saying there. Sorry to hear about your friend. I had two die last semester, it's a terrible feeling. Hang in there and take good care of yourself <3

Laker7491 said...

I understand completely how you feel about living like this for the next 30 to 40 years. The thought of having the level of pain I have had with my neuropathy for another 6 months to a year is more than I can stand. Right now the only thing that helps with the pain is medical marijuana and then it's because I fall asleep within 15 minutes of smoking it. Gabapentin keeps it at a somewhat tolerable level most of the time. I guess that's why I'm so anxious about taking Flagyl.

My Dr. wanted to give me Levaquin which is a black box drug and can cause permanent neuropathy, he told me he never had anyone have that problem but to me that means nothing. I could be the one it happens too. I'm just trying to prevent more damage from happening to me. So while a black box drug may not cause permanent side effects, it would be nice to know up front so you can determine what it means for you. I also understand everyone is different, but it's so frustrating trying to figure out if you should take it or not.

Thanks everyone, I really appreciate it.

This condition is just so painful, that I never imagined that this level of pain is possible. Sometimes I wonder if I'm going to make it through the next 15 minutes. Sometimes I wonder if I'm going to be able to continue working. I try to stay strong and keep positive, but I'm totally worn out at this point.

You are totally correct to question Levaquin. There are handfuls of people in my SFN FB groups that think it caused their body wide neuropathies.

Psilociraptor said...
I'm reading it "What you are saying happened to you is an autoimmune issue. That just doesn't affect neurons". I agree that herxing causes it but autoimmunity is often a part of that so I'm confused what you're saying there. Sorry to hear about your friend. I had two die last semester, it's a terrible feeling. Hang in there and take good care of yourself <3

The terrible thing about neuropathy is if the cell body of your small fiber nerve dies, then your nerve can not regenerate.

It's hard to know what damage is reversible and what is permanent. How long to treat? How much pain is acceptable?

Girlie said...
BBM - when I first started taking minocycline, I did some reading on side effects and I didn't see anything about peripheral neuropathy.

The link that was posted (madisongrrl) a few posts back does suggest an autoimmune trigger to the peripheral neuropathy,

Dr. J. sees autoimmune reactions with Mino and avoids it as a first line therapy. But he says there is not data on it and it is just his clinical observation.

lymemd.blogspot.com/2009/05/knee-assymptomatic-babesia-autoimmune.html?_sm_au_=iVVtPfPQHvV7v63V

Psilociraptor said...
I have mixed feelings about the regenerative capacity. I've had full body neuropathy recede back to my legs and even that improves somewhat with treatment though I haven't been far enough in for full remission. I remember reading somewhere that rats regenerate nerves far better than humans and that one of the limiting factors is impaired macrophage clearance of cellular debris. Makes me think that lifestyle and immunity has a lot to do with it. But that's just me, I tend to give the body a lot more credit and ask what might be preventing it from doing its thing. A lot of the prevailing dogma in medicine stems from studying fundamentally sick populations as well as many times lacking a clear understanding of the etiology (i.e. Persistent infection)

Interesting thought!

Psilociraptor said...

One thing I'm a little confused on is the connection between small fiber neuropathy and demyelination disorders. As I understand it small fiber nerves are unmyelinated? Yet pathologies are associated with many of the same antibodies as many demyelinating diseases? Anyways I didn't get any of the conduction studies or biopsies. Seemed like a whole lot of pain simply for some doctor to nerd out and reductively classify my disorder with no added benefit to me as a human. But I had high titers of anti-GM1's, can't remember which isotype, and enough burning pain to connect the dots.

Yes small fibers are mostly unmylelinated. All the top LLMDs say that small fiber is immune mediated in the context of Lyme and requires IVIG......which most of us will never qualify for or be able to afford.

You are correct that you do see both small and large fiber pathologies together. I think we just don't understand what is going on. And I really don't see anyone doing much research on this. There is not much research on small fiber in general, let alone in the context of Lyme. If you are not diabetic, neuros shrug their shoulder and send you to pain mgnt with your "idiopathic neuropathy".

You only need to worry about a punch biopsy if you are lucky enough to have a secondary condition that will qualify you for IVIG or have it as "proof" of your condition so you can get a pain mgnt doc to treat you. Many neuros won't even bother with the punch biopsy because SFN remains a clinical diagnosis. It can be patchy and the biopsy will miss it. It's kind of a crap shoot. If you have severe skin burning, then it's safe to say you have SFN.

Post Edited (madisongrrl) : 1/26/2017 11:16:22 AM (GMT-7)