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Health Advice for Peripheral Neuropathy & Drug Induced/ Toxic Neuropathy

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Unread 12-25-2012, 06:50 PM   #31
Jesse M
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I read the extra wiki article on Cipro. My doctor mentions this to me in positive light, citing that he believes I got PN because I was prescribed NSAIDS along with the Cipro antibiotic. Essentially, he thinks I would NOT have gotten PN if I was not taking naproxen/Alieve along with it.

I don't know if this is true, but it seems to make sense.

The odd thing about this is that she feels certain that I will slowly heal, as she believes the damage to my nerves was interrupted when I stopped taking the drug.

Indeed, I did stop taking the drug once I felt the side effects. Basically that my nerves were damaged but notto a point where it's irreversible - or as she put it "not xtreme or severe".

Sometimes I get really depressed and I don't listen to their advice, (this coming from 2 neurologists) but I have to admit that their stern prognosis seems to be coming true.

A long while back, they told me that the severe pains would fade away as the weeks passed. That did happen. They also said that I would suffer from "mild-intermittent" pain for some months before they lightened. That has also occurred.

They also warned me about flare-ups and circumstances that could aggravate them - they were right about that, too.

Lastly, their prognosis and advice for me is as follows: "You will continue to heal as your nerves repair themselves. But bouts of depression can cause anxiety which causes excessive activity in the brain, which causes pain."

I think they mean that depression actually causes PN pain, which I thought was silly when I first considered it, but from other peoples' stories, I'm starting to believe it.

My neurologists say: "You've healed about 70% already - and you now only suffer from light pains and some bad flare-ups from time to time. If your nerves were damaged badly, you would not have felt this well in such a short amount of time no matter what meds you are taking."

She followed up with this last sentiment which I feel is probably the truth of it. "You'll eventually heal up, by next summer you'll most likely be healed to a point where you won't notice the pain much, if at all some days. But you'll probably always get some flare-ups from time to time that will be fairly painful, before returning to a normal health cycle. As someone that can initiate nerve pains from depression -it's best to take a better attitude about it."

Whether depression "induces" PN pain, I don't know. What is she saying, that PN is partially psychosomatic?

It seems she means that I will always have PN, but eventually at a level that will be far less painful and much more controllable. I have to agree with her, since this seems to be the level I'm already at right now. If I do get to the level she mentions by next summer -I'll be more than satisfied with that outcome.
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By the way, your cat looks a lot like mine. But mine is now 11 years old. She's still in fine health, though I feel she spends too much time out in my yard at night. (I think she's too old for that stuff now-a days. LOL) And I'm finding myself spending extra money for healthier cat foods and such. My cat has also been a long time freind to me, not just a pet....Merry Christmas and Happy Holidays.
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Unread 02-27-2013, 03:21 PM   #32
Jesse M
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I just found a very interesting article about Cipro and flouroquinolone antibiotics from a Doctor Bob Martin - a medical researcher. The article is based on older info, but surprisingly it echoes much of what we all talk about here. What is surprising is that it's coming from a medical professional, a rare thing indeed.

http://www.doctorbob.com/dm--reactions-to-cipro.html
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Unread 02-27-2013, 03:50 PM   #33
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This article was written by Dr. Jay Cohen, MD... whose website
is linked to often here. (not by Dr. Martin).

quote from the end of the article:
Quote:
hope that your condition resolves soon. Sincerely, Jay S. Cohen, M.D.

1. Cohen, JS. Peripheral Neuropathy with Fluoroquinolone Antibiotics. Annals of Pharmacotherapy, Dec. 2001;35(12):1540-47.

Copyright 2003, Jay S. Cohen, M.D. Readers have my permission to copy and disseminate all or part of this newsletter if it is clearly identified as the work of: Jay S. Cohen, M.D., The Free MedicationSense Underground E-Newsletter, July-August 2003, www.MedicationSense.com.
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Unread 02-27-2013, 07:51 PM   #34
Jesse M
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I stand corrected, though on the top of the site is said Dr. Bob for some reason. LOL Thanks.
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Unread 03-20-2013, 07:40 PM   #35
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Your post gave me hope, as I am freaked out. Just took the antibiotic for 3 days (for a bad cold/painful sore throat/ear pain) and that was it, within 72 hours, I felt the symptoms. I had been diagnosed with peripheral neuropathy 5 years ago (due to pinched nerve/disk issue), but after rehab, the symptoms went away (numb arms/hands) at night. This time, I get day symptoms during the day, tingling, burning, hands, feet, etc. Hard to tell which way it's trending right now, but it's scary. I wish I had known of this side effect, as I would never have taken this drug. Your words gave me hope. I'll try the vitamins.

How are you feeling?

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Originally Posted by Jesse M View Post
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What are they chances of healing from toxic neuropathy or neuropathy caused by medicines and drugs such as Fluoroquinolones, like Ciprofloxacin and Flagly?

I posted this thread for any advice to those suffering from PN (Peripheral Neuropathy) caused by drugs and medications. However, ANY advice about dealing with PN and living a healthier life with PN, and more importantly, healing from it, are very welcomed here.

I'm starting this off by posting what I do know about taking any Fluoroquinolones antibiotics: first off they should NEVER be taken with NSAIDS (that means NO Aspirin, Aleive, or Naproxen) or should NOT be taken if you are taking any Benzodiazapines , such as Clonazepam/Klonopin, Xanax, or like-minded anti-anxiety medications.

(Below: my personal history with Neuropathy caused by Cipro)

I have Peripheral Neuropathy from a prescribed, 21-day treatment of Ciprofloxacin (500 MG twice a day) back in June 2012 for a case of prostatis. After 3 weeks, I first noticed the pain and then I quickly stopped taking it after noticing very severe pains. Now, 5 months later – the last days of November, 2012, I still have some frequent pains though they are far less painful.

At the time, I was taking Cipro I was also taking the NSAID Naproxen (1 pill per day and my 1 MG of Clonazapam twice a day). I have discovered afterward that taking NSAIDS and benzos such as Clonazapam/Klonapin while taking Cipro augments Cipro Toxicity. I have had many tests done – I do NOT have diabetes or MS. So this suggest further that my Neuropathy is from taking Cipro.

I had regularly drunk less/or about one 6 -pack of beer on the weekend – so alcoholism seems a very unlikely cause. Now, in November of this year, I still suffer from daily pains of burning, needle and pinpricks and cramps, especially in my feet, toes, and fingers.

What has changed is that I no longer feel the hardcore stabbing pains in my toes or the prolonged cramps. In fact, 5 months into it, I am feeling much better with only very light cramps and needles stings-like pains. I have some days (up to a full week sometimes) where I feel an increased flare-up, or relapse of strong pains -but that subsides and then I go back to feeling nearly normal again.

I even have days where I feel very “Almost Normal”. Meaning that I actually feel as if my body has healed from it - but then it comes back, sometimes pretty bad.

What I'm saying here, is that PN - at least PN caused by drugs seems to be a struggle of the body to heal itself and there are lots of scary questions and answers to this affliction. Still, there seems to be real hope that I, and many others CAN indeed heal from this horrible condition -sometimes much faster than we think.

Basically, I’m afraid of what most Cipro poisoned people are of – that this pain will last for the rest of our lives. Still, I feel much, much better than I did 5 months ago, especially after taking the 4 vitamins I’ve been taking daily since august. (Vitamin C 120 mg, Omega 3 120 mg, Magnesium 250 mg and B-12 500 mcg). ...And more recently, Lycopene (for prostate health).

Please give me your opinion on my case, as I think it will help many others with similar circumstances... as well as your own thoughts about healing from drug induced PN.
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Unread 04-30-2013, 01:22 AM   #36
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Jesse M Please message me regarding the Cipro induced toxicity. I have a very severe case of it and could really use some help.
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Unread 04-30-2013, 01:51 PM   #37
Jesse M
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Default Healing from PN really Happens

Quote:
Originally Posted by P Moore View Post
Jesse M Please message me regarding the Cipro induced toxicity. I have a very severe case of it and could really use some help.
This is going to be a very long post, almost a darn book. LOL But please bare with me -there is some important things said here.

First off, understand this: Despite what some people say this is NOT permanent -it may be long-lasting, but it will get better over time.

Neuropathy is not the disease itself, but symptoms caused by something else. They can have very different causes and each person is unique and WILL have a different length of healing.

If you have Cipro damage it is similar but definitely NOT the same as pn from diabetes, chemo-therapy, or anything else. The cause is much different and so can the outcome.

My advice is to find the right treatment right away. (This is, in actually healing the nerves via a strong and careful vitamin regiment) This has indeed helped me tremendously. I do not take medicines to treat the pain of Neuropathy.

I do take 1 low-dose anxiety pill (Clonozepam 0.5) per day, as I had anxiety before Cipro-pn anyway. But this does NOT mask the pain, it simply stops some of the activity in the brain that causes stress. (I checked with my doctor on that). But I do NOT suggest taking anything like Clonozepam since it can be very addicting for some.

I do take quite a few well-chosen vitamins, but no drugs. The reason for this is because I could honestly gauge how I am healing and the news is positive.

I can't speak for anyone other than myself, but I learned that I had to discover, research, and treat myself, mostly because many neurologists, or many doctors for that matter, don't even want to acknowledge that Cipro causes such horrible PN. Still I have found several doctors who DO cite Cipro and its relatives as very harmful drugs.

Right away, I kept and continue to keep a daily journal (very important) of my progress on both a regular paper calendar and a MS word file. It has now been 9 months since I quit taking that Cipro and I am still suffering from its neuropathy pain, almost all nerve pain. But it has dropped considerably since it first hit.

I know this beyond a doubt, because I keep a journal of my healing where my healing strides have been clearly recorded. There was a time when I had bad pains all day, every day, for nearly 2 months.

These included, burning, needle stings, cramps and stabbing pains. And they could occur anywhere on my body, but mostly in my feet and hands. They made me think of suicide very often - this mostly from the false notion that it is permanent.

Then, it started to just be light pains, then to slight pains and now to slight pains throughout the day but some week-long flare ups every month, - but there are many days during the month were I feel quite fine, with only very light, barely noticeable pains -the kind I could live with without hindering my happiness or quality of life. ...And that is the goal to reach. Remember that.

Regarding so-called "permanent" nerve damage: any expert doctors in PN (Such as the CCPN "Chicago Center for Peripheral Neuropathy" ) will tell you that permanent damage occurs only in extreme cases. But even in extreme cases, your nerves can heal to quite a degree.

The problem is that no one can tell you if you have an extreme case or not, as the tests for nerve damage are not well understood and people's bodies vary so differently regarding tolerance of the drug.

This is important: You have to understand this, too - you do NOT have to heal completely to live a happy, unhindered life. All you have to reach is a certain point where the pain is not affecting you much. Trust me - that alone will be more than enough to make you jump for joy. Even still, if you can reach that point, you'll probably heal up completely as the years pass.

Certainly I once felt I had an extreme case, but since I'm healing at a pretty fast rate - I now feel that was not the case.

Today, currently; I still suffer from Cipro induced nerve pain and damage. But it comes and goes in cycles. I do feel slight or light pains everyday, but they are sometimes not even noticeable. Some are just weird, like a sudden pinprick on the top of my scalp or even a sharp pain on the tip of my tongue. Nerve pains hit anywhere they like at any time, but don't worry, they do go away as quickly as they came, that is the nature of these little flare-ups.

Very often a flare-up of pain will come simply due to your nerves healing -this is a painful process itself.

However, when I am in a flare-up, they can be downright disabling, even causing me to have mini-seizures and mental meltdowns. Still, these huge flare-ups only last about 5 days (far shorter than they did only months ago.)

Now for the wonderful part: I average about 18 "Near Normal" days per month now. This means over the last 3 months, out of 30 days per month, about 15 to 18 of those days, I feel literally Nearly Normal - meaning just having very slight almost unnoticeable pains. If I could get to that point for the whole month, that would be enough for me - I'd be very happy with that indeed. Meaning that I do not have to heal completely to live a really happy life, though I still hope for it.

As I'm writing this, I'm coming off a 2-day flare-up which could have been caused or irritated by extreme weather changes (More than 2 days of rain in a row usually does it for me) that, or high emotional stress.

Also you have to keep trying to take care of yourself. Consider this: I have never been a heavy drinker in my life, but since I got PN I have been tempted to drink beer to ease and escape my stress.

This is NOT a good idea as alcohol effects the nerves. However, I do drink about a 6-pack of light beer for 1 Saturday of the weekend now - making sure I take ALL my B vitamins to hinder any alcohol related nerve damage. ( BTW, Alcoholic Neuropathy is caused by either the poisoning of the nerves with alcohol OR by the depletion of B vitamins - no one is yet certain). ABout B-Vitamins; try not to take too much B-6, this can cause pn to worsen.

Still, though I don't drink much, I am trying to cut down my alcohol consumption. This is not as easy as it sounds, since I'm always so tempted to join-the-fun on the weekend and forget about my stresses. Also, I have to drop my anxiety pill those days as well because they don't mix well with beer.

What I'm getting at, is it's tough to discipline yourself and no one is perfect, just keep trying to do things like drink less alcohol, less overtly sweet sugars and brush your teeth with a NON-fluoride toothpaste like Toms of Main - just avoid anything that can, or might, irritate your condition. People tolerate different things in different ways, so what works for you may not work for others. It's a trial and error process concerning what irritates your personal symptoms. Even the weather can be a big factor if it gets too hectic. Above all, do not take anymore antibiotics or drugs that have even the slightest chance to worsen neuropathy.

However, please don't get fanatical about it - moderation in taking in anything is the key, otherwise, you'll stress yourself out about it and make yourself worse! I certainly did more than a few times.

More so, do NOT - and I repeat this: do NOT take in all the internet forum "horror-stories" of Neuropathy. I did this and I got very, very depressed! They are misleading, because they do not tell your personal story, so they do not help you. Stick to positive posts...Please trust me on this. It makes a big difference on how you feel and also keeps your mind on the reality of the condition which is not a "Doomed" scenario.

There is no doubt that people can and do heal from Cipro induced peripheral Neuropathy. You don't see it much on the net, because people just want to leave that horrible experience behind them, let alone write about it. I, myself, feel like that and I'm just starting to really heal up...and I still find it tough to write about it.

Now, each month I feel a little bit better and I'm so glad about that. Thank God. And I Know that you will too.

I have found another young doctor who knows about this and has given me the advice below, which I hope can help you too. I found him to be the most accurate of all the docs I've seen so far. He's the only doctor who read my personal medical records fully about Cipro-induced pn, and he believes that I will heal either near completely or truly completely within about 2 year’s time. While examining me off and on the record, he personally said this to me: He told me these exact words;

“It’s a very bad side effect from Cipro. You shouldn’t be afraid, it’s NOT permanent. Don’t listen to the stuff you read on the Internet, those people are NOT you – every person is different, they have different causes for their problems. It will go away and it’s just a matter of TIME before it fades away. God made our bodies to heal. In the meantime, keep taking your vitamins, take something for anxiety and pain and also to relax and not think about the pain, keep your mind on other things and time should pass more easily. You will heal, be patient and go on living your life the best that you could.”

I really hope this helped you all.

Last edited by Jesse M; 05-01-2013 at 01:53 AM.
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Unread 06-01-2013, 11:11 AM   #38
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I want to thank you for the uplifting post on toxic PN. I didn't take Cipro, but took Flagyl and had an EXTREME reaction.

I've gotten extremely painful PN. Everywhere in my body. This all started in March this year (2013.). I also have very bad headaches/head pressure. It's made me very depressed and hopeless as it seems to get worse, but I agree it is much worse with depression, anxiety, and stress.

I hope there is some recovery for this. I am a young mother of two babies and and struggling to take care of them over pain.
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Unread 06-11-2013, 01:44 PM   #39
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I had taken Metronidazole (Flagyl) for about a week an entire year before, I took Cipro for a Diverticulitis infection. That might have added to me getting PN, when, a full year later, I took the Cipro. However, I don't believe this is true, as a primary cause -- it was most likely the mix of Clonazepam (a Benzo-drug like Xanax) and Naproxin (Ibuprofen or Aleive) that made the CNS PN worse.

For you, personally, I suggest you keep in mind that you WILL heal. It will take time and you have to be strong for yourself and your family. Don't expect people to understand your pain, either - because this is an "Invisible affliction" people often don't understand. Just do things that keep your mind off of the pain.

I strongly urge you to keep a daily journal, where you can track your healing progress. If not a journal, make a small note on a calendar each day, to gauge how you feel. I do both. When I'm feeling down from pains, I look back at that journal and see that without a doubt, I AM healing -you should do the same; I'm sure you'll see what I mean.

Now, here's some really great news for you: Most people suffering from PN caused by Flagly DO heal, and they do so much faster than those from fluoroquinolones drugs. I got this information from a doctor at the Chicago Center for Peripheral Neuropathy. I pasted the link to that site below.

Also, only recently, I started to take a vitamin called Acetyl-L-carnitine. After around 2 months of taking this, I must admit that I am feeling quite a bit better, with a huge reduction in pains. This is probably due to it's proven effectiveness in regenerating nerve cells and more so, its analgesic effects to stop you from feeling as much pain.

I do not know if it will work for you, but it's something you should research for yourself. ...May God bless you with well health.

Link below (Chicago Center fo PN)
http://peripheralneuropathycenter.uc...ic/drugs.shtml
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Unread 06-12-2013, 03:41 PM   #40
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Thanks for that. I'm just nervous because I think the flagyl set off something. I now have autonomic dysfunction too! (Started 3 weeks ago) I'm wearing a holter heart rate monitor now from my dr. They are saying it might have been a double attack now as I had a virus first, then a drug like flagyl. My heart is now painful, slow (or fast) and doing flipflops, and I'm having a hard time breathing. Also I'm constipated for a month. This is on top of every area of my skin burning or tingling. This is a nightmare. I hope my body can clean this mess up!
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