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Idiopathic PN 05-17-2012 02:07 PM

Quote:

Originally Posted by helpmeron (Post 880244)
I have been dealing with if for 10 months now. I am hoping that Gluten Free gives relief over time. I have read that 1 month doesn't do anything on this diet.

I heard B-12 injections are really good too (which can also take a long time for it work also to help regenerate our nerves). I also take 1200 mg daily (2 pills twice a day of quality brand Alpha Lipoic acid).

I got Neuropathy from taking the antibiotic called Levaquin (For 10 days). All my neuro and blood tests too were negative as well to try and find an underlying condition. This was the 1st test that came back Positive since I have started my search to recovery in the last 10 months.

Have you been able to try and figure out what could have caused your neuropathy?

I am taking 5000mcg VitB12 (Methycobalamine) and R-Lipoic Acid 100mg, among other things.

Oh, I have been into all kind of tests and they all came back negative, even my Skin Biopsy is normal. I was told though, in this forum, that PN, in its early stage comes out normal in the skin biopsy.

I read Mrs.D's recent post about TB medication that could cause PN. I was on TB medication for 9 months in 2000 (or 2001). I also had flu vaccines for the past 3 consecutive years. These two factors are mentioned to be causative of PN. Although I am not sure if these are the real causes of my PN, I am taking supplements for Mitochondrial damage. Anyway, I was already taking the recommended supplements on Mrs.D's Supplements, etc. thread even before I read about the TB meds.

God bless.

grandma123 05-17-2012 02:16 PM

Quote:

Originally Posted by helpmeron (Post 880256)
I actually felt Hip burning pain while i was taking the levaquin, but the pain in my legs and hands started about a week after wards and gradually increased. I am not sure yet which gluten-wheat test came back exactly but i'm getting the results next week mailed to me so I can let you know then the exact test it was. I spoke my doctor yesterday and he told me that my levels were extremely high that showed that I am gluten sensitive. Hopefully this what will get me on the right track to recovery.

I did research online about levaquin and neuropathy so this is how i put it all together. It took me almost 5 months to realize that it was the levaquin actually can cause neuropathy.

Thanks for the information. Do any of your doctors believe that the levaquin caused your PN? And if so, what is their treatment for it?

Sallysblooms 05-17-2012 02:50 PM

Levequin and most antibiotics can cause it. It is awful. I just sat with my doctor yesterday and he can't think of any to use if my diverticulitis acts up worse. Cirpro, Levaquin etc. are used for it. I can't take it again and start over. :( I know Levaquin caused my problems. Common.

Reg. docs have no clue how to help the nerves heal. Integrative docs do. The Alpha Lipoic Acid, Benfotiamine, l carnitine, fish oil, b12, etc. and in my case no gluten or sugar, LOW carbs, no bad carbs. I have no blood sugar problems, but nerves do not like sugar. I am so much better now. The PN is almost gone. Still working on Autonomic Neuropathy. (Dysautonomia)

I have no idea what to take now. Slim choices on "safer" less toxic antibiotics.

grandma123 05-17-2012 05:10 PM

Quote:

Levequin and most antibiotics can cause it. It is awful. I just sat with my doctor yesterday and he can't think of any to use if my diverticulitis acts up worse. Cirpro, Levaquin etc. are used for it. I can't take it again and start over. I know Levaquin caused my problems. Common
Did your PN symptoms start while on Levaquin or later? Because the half life of both cipro and levaquin is such that about 20 hours after your last dose it is out of your system. So, if during the course of taking it your nerves were damaged why would the symptoms be delayed, if indeed they were? Why wouldn't the PN be evident while on it or shortly thereafter?

helpmeron 05-17-2012 09:58 PM

Quote:

Originally Posted by grandma123 (Post 880318)
Did your PN symptoms start while on Levaquin or later? Because the half life of both cipro and levaquin is such that about 20 hours after your last dose it is out of your system. So, if during the course of taking it your nerves were damaged why would the symptoms be delayed, if indeed they were? Why wouldn't the PN be evident while on it or shortly thereafter?

Where did you read that those antibiotics leaves your system after only 20 hours?

Junebug54 05-17-2012 10:56 PM

Hi Shults, I have had the same problem with my feet for 2 years. The pain is unbearable. I can only wear very soft open toed slippers that close with velcro. I had to go to a pain clinic and the Dr. there helped me so much. I take 300 mg of lyrica at Breakfast & supper; 60 mg cymbalta at breakfast; 30 mg morphine at supper; oxicodent at 4pm ; a sleeping pill & oxicodent before bed. this makes the pain bearable but I am looped some days more than others. I manage. Hope you feel better, take care June

Dr. Smith 05-18-2012 07:10 AM

Quote:

Originally Posted by helpmeron (Post 880449)
Where did you read that those antibiotics leaves your system after only 20 hours?

Quote:

Time for Ciprofloxacin to clear out the system

Ciprofloxacin half-life is 3-5 hours. So it take[s] about 15-24 hours to clear out of the system.
http://www.emedexpert.com/facts/cipr...in-facts.shtml
Quote:

Time to clear out of the system

Levofloxacin half-life is 6-8 hours.
http://www.emedexpert.com/facts/levo...in-facts.shtml
So probably a bit longer for Levaquin.

Doc

mrsD 05-18-2012 07:46 AM

There is a pharmacological concept called "delayed drug toxicity".

It is complex, but exists for many drug entities. For example, the tendon ruptures from fluoroquinolones can happen up to a year or more after stopping the drug. It took over a DECADE to figure this one out.

Drugs that damage cells/DNA or that set off an autoimmune cascade, are actually exhibiting delayed toxicity.

You can Google "delayed drug toxicity" for more information.
Suffice it to say, delayed toxicity typically appears post marketing and does not show up in many drug studies that the FDA initially requires. Several fluoroquinolones have been taken off the market for this reason. There were at one time many more than we have available now.

Here is an explanation of delayed allergic reactions that occur long after the suspected trigger drug is supposedly gone from tissues: serum sickness is possible with some antibiotics:
http://www.nlm.nih.gov/medlineplus/e...cle/000820.htm

Steroids exhibit also a trait, after being taken, they can trigger bone necrosis which typically attacks the hip, which can fester for months/years leading to destruction of the joint. This is a delayed toxic event also.

grandma123 05-18-2012 09:14 AM

Quote:

Originally Posted by Dr. Smith (Post 880559)
So probably a bit longer for Levaquin.

Doc

My concern is that patients are self diagnosing that their PN is the direct result of taking Cipro or Levaquin long after they've taken it without any diagnostic test to prove this. If the PN didn't happen while they were taking these drugs it seems less reasonable to suspect that it was the cause if the PN happened weeks or months later.

PN is not an insidious condition happening inside us without knowing it. If the nerves are damaged then we should feel it very soon while taking it. Like heart damage with Vioxx or osteoporosis with Femara - these things are happening to our bodies while we are on these drugs but don't feel the effects (unless you break a hip or have a heart attack) and they have to be diagnosed with medical tests.

Other drug side effects are outward and would be felt while taking the drug - like flushing with niacin, or a rash or swelling of the tongue or hives, etc.. So, too, with PN. The symptoms would be more likely to be felt while on the drug, IMO.

Aspirin can cause tinnitus (it does with me). So, can I conclude that I took an aspirin 10 years ago and if I now have tinnitus that it is the cause?

In reading blogs of people who had many bad side effects from these drugs most started soon after taking and while on the drugs.

I think we need to proceed with caution when trying to make a direct connection to PN and drugs unless we have these symptoms while on them or shortly thereafter - not weeks, months or years later.

helpmeron 05-18-2012 10:28 AM

Quote:

Originally Posted by grandma123 (Post 880602)
My concern is that patients are self diagnosing that their PN is the direct result of taking Cipro or Levaquin long after they've taken it without any diagnostic test to prove this. If the PN didn't happen while they were taking these drugs it seems less reasonable to suspect that it was the cause if the PN happened weeks or months later.

PN is not an insidious condition happening inside us without knowing it. If the nerves are damaged then we should feel it very soon while taking it. Like heart damage with Vioxx or osteoporosis with Femara - these things are happening to our bodies while we are on these drugs but don't feel the effects (unless you break a hip or have a heart attack) and they have to be diagnosed with medical tests.

Other drug side effects are outward and would be felt while taking the drug - like flushing with niacin, or a rash or swelling of the tongue or hives, etc.. So, too, with PN. The symptoms would be more likely to be felt while on the drug, IMO.

Aspirin can cause tinnitus (it does with me). So, can I conclude that I took an aspirin 10 years ago and if I now have tinnitus that it is the cause?

In reading blogs of people who had many bad side effects from these drugs most started soon after taking and while on the drugs.

I think we need to proceed with caution when trying to make a direct connection to PN and drugs unless we have these symptoms while on them or shortly thereafter - not weeks, months or years later.

I think your a little off on your judgment. I am 32 years old, Healthy and fit. I actually had burning type pain while taking the medication. My bone head doctor told me to continue taking the meds because both of us didn't read the label that is on Levanquins warning sheet that reads if you experience any burning, tingling, or pain sensations to stop taking the meds immediately to prevent any irreversible nerve damage. I hear what you are saying but I don''t think you can compare Niacin, and Aspirin to a heavy antibiotic like Levaquin. Levaquin (fluoroquinolones) drugs actually cross your Brain Barrier.


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