Neuropathy does improve

bluesfan · 06-26-2015, 01:49 PM

Hi franklin76
Welcome to Neurotalk. Glad you found this thread - it's a good one and your bumping it up to the top will help others see it. Re finding MrsD's stickies - stickies are threads that are stuck to the top of a forum page. Go to any of the forum topics and you will see at the top of most lists a number of threads that are designated 'stickies'. MrsD has several throughout neurotalk. The one you're probably looking for is at the top of the Peripheral Neuropathy forum.To get there click on NT Support Groups (top left of page) then go down to Health Conditions and find the Peripheral Neuropathy forum - click - the stickies should be at the top.

I hope you find some answers to your questions. There are plenty of friendly folk here to help out - just ask away. Note that some of the postings can be quite old and you may not always get a response to direct questions to older posters.
All the best.

franklin76 · 06-26-2015, 02:16 PM

I found it - you can ignore my old reply. Thanks!

LizaJane · 06-26-2015, 03:08 PM

I want to encourage people that one of the keys to improving is correcting the cause. Idiopathic neuropathy does not exist; it is simply undiagnosed.

It was 15 years before I found myself accidentally in the hands of a Lyme Literate MD who diagnosed my Lyme. Treatment "reverse aged" me to a person I no longer recognized, as I'd become so identified with my symptoms.

But the entire neuropathy has not reversed, and another smart MD looked for something no one else had: mold toxin. I tested positive for two neuro-toxins. Then I had my home inspected. Both molds are living in my house. One is obvious, once you know to look under your sink on the wall. The other is behind drywall, which makes excellent fodder for mold.

So now I face detoxing from the mold and remediating my home. I expect it to cost way more than I'd want to spend, but I also expect my health will make more gains.

Don't stop looking!

Feed your mitochondria, because they are the powerhouses of detoxing and feeding our long nerves.

Liza Jane

franklin76 · 06-27-2015, 10:08 AM

Quote:

Originally Posted by LizaJane

I want to encourage people that one of the keys to improving is correcting the cause. Idiopathic neuropathy does not exist; it is simply undiagnosed.

It was 15 years before I found myself accidentally in the hands of a Lyme Literate MD who diagnosed my Lyme. Treatment "reverse aged" me to a person I no longer recognized, as I'd become so identified with my symptoms.

But the entire neuropathy has not reversed, and another smart MD looked for something no one else had: mold toxin. I tested positive for two neuro-toxins. Then I had my home inspected. Both molds are living in my house. One is obvious, once you know to look under your sink on the wall. The other is behind drywall, which makes excellent fodder for mold.

So now I face detoxing from the mold and remediating my home. I expect it to cost way more than I'd want to spend, but I also expect my health will make more gains.

Don't stop looking!

Feed your mitochondria, because they are the powerhouses of detoxing and feeding our long nerves.

Liza Jane

Interesting. So how did you test yourself for mold? Specific blood tests? They found my copper levels to be low 60 vs 70-160 and ceruoplasm the same so that is the latest thinking as they said it was very rare for someone of my age to have this be below normal as body needs very little copper intake to maintain these levels (better question is why am I not absorbing the copper?). Will see if this helps with the reversal. I will keep people posted. I was wondering a bit about mold but the 4 other members living in the apt with me have no symptoms. The bathrooms literally have brown stained mold on the marble underneath the toilets and around the shower walls and in general the apartment and bathrooms don't vent well. I am doubtful but I guess it could be worth a check. Thanks for the tip. Have you heard anything else on copper deficiency on this forum?

Fran E · 07-23-2008, 03:07 PM

Hi, I'm new to the forum. I have idiopathic peripheral polyneuropathy for 1.5 years now with worsening nerve conduction tests. Also other fun symptoms. I've had the MRI/CT scan, spinal tap, muscle biopsy, lip biopsy (that was a lot of fun

and now a nerve biopsy from which I am (hopefully) recovering. One of the replies below mentions a protocol on page 2 or 3 of the stickies that has perhaps contributed to some recoveries.... this sounds interesting and worth trying. I found the stickies but cannot find the article - can anyone advise? As you can probably tell I have never been on a forum before, mind you I've never had a significant medical or other problem before!
Thanks, look forward to hearing from you.

cynthia7 · 10-07-2008, 12:24 AM

i can't find the stickies that have lize jane's list of supplements. how do i get to it?

mrsD · 10-08-2008, 08:49 AM

Quote:

Originally Posted by cynthia7

i can't find the stickies that have lize jane's list of supplements. how do i get to it?

scroll back on THIS thread to page 2, and find post #19.
The post numbers are in the upper right hand corner of each
post.

Your post on this thread asking the question is # 36

KyPain · 10-30-2008, 12:32 AM

I just stumbled on to this site yesterday and am so excited at, what seems like, the first real hope for my sometimes unbearable pain. I am up to 1500 mg. of Neuronton with only minimal relief. Before giving my PN story, can I just cut to the chase and ask for a complete list of the supplements you take? What dosages do you recommend? And at what times of day? With or without meals? Have you or anyone else written up a supplement plan that works? Thanks in advance for someone's, hopefully, speedy response.

Quote:

Originally Posted by LizaJane

My neuropathy began in 1996. By 1999 I had two abnormal EMGs. I think had a bunch of other abnormals. I went to Mayo and had more abnormals.

Today I had an EMG as preparation for spinal surgery and the sensory nerves were normal. I haven't gotten the final report, but he neurologist who did the test said all nerves were normal, except my peroneal, which have never been normal. I do have a new L5 radiculopathy with denervation of the L5 muscles on the left, but it's not new enough to be causing my pain. (that's from the spine)

After seeing the results, one of the neuros said: That means the original diagnosis was wrong, and you never had neuropathy!

Yah, right. I told them I had learned how to care for it--the secret is feeding the mitochondria needed to grow axons (CoQ10, acetyl L carnitine) and taking antioxidants to keep inflammation from causing harm. In addition, keep using the muscles, whether you feel them or not. That was the secret I learned on this forum.

And really, my symptoms are so small compared to 10 years ago. Yes, they're not gone, but they are not that significant.

It can be done. If you've got an idiopathic small fiber neuropathy, or long fiber, and don't have an ongoing CIDP or Sjogren's picture, your peripheral nerves can heal.

mrsD · 10-30-2008, 07:49 AM

for supplements (non drug interventions) that will work equally for everyone.

The causes of PN are many. And people all vary in diet and metabolism, and genetic details.

There is a trend showing however that drugs and some toxins may poison mitochondria, so that using supplements that target them, may help.

But there are vitamin deficiencies due to disease (pernicious anemia), or drug use (use of acid lowering drugs), genetic inheritance of genetic errors that then necessitate higher doses (B6, folate), malabsorption due to gluten, fructose intolerances, or Candida infection. There are diseases like insulin resistance, diabetes, hypothyroidsim, that contribute to PN.

So it becomes a complex issue, and a recipe cannot be crafted to fit all people. Each needs special consideration.

MomV3 · 02-16-2009, 11:21 AM

Quote:

Originally Posted by KyPain

I just stumbled on to this site yesterday and am so excited at, what seems like, the first real hope for my sometimes unbearable pain. I am up to 1500 mg. of Neuronton with only minimal relief. Before giving my PN story, can I just cut to the chase and ask for a complete list of the supplements you take? What dosages do you recommend? And at what times of day? With or without meals? Have you or anyone else written up a supplement plan that works? Thanks in advance for someone's, hopefully, speedy response.

The docs wanted to put my husband on Neuronton when PN pains made it almost impossible for him to walk. He has problems with almost all meds and when he learned the side effects, we did not even get the RX filled! He had already been taking the supplements mentioned here, but the therapeutic block which was supposed to help had made the PN worse. I found out about Neprinol from the QXCI forum. An MD recommended it. He did not sell it, but found it more effective than other forms of Nattokinase. It has other enzymes in it, too. It took several months, maybe because he had to take a reduced amount, but it got rid of all the PN pain.

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