Originally Posted by P Moore
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
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.
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.