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Living with Polyneuropathy CIDP, GBS, & CMT

CIDP

I was struggling with Chronic Inflammatory Demylenating Polyneuropathy. This started about 3 years ago when I was 50 and I got an upper respiratory cold… this cold lasted longer than normal with a cough that went on for many weeks. I finally seemed to get over it. Two weeks after this I started feeling some extreme fatigue, followed by neurological symptoms of pins and needles, numbness, and flushing. The neurological symptoms would only last a few days then go away but the fatigue lingered for months… it seemed to fade away and I had a few months of regained energy and activity. Then another wave hit… this cycle went on, with the time between episodes shortening until I just had constant fatigue. My muscles were in a constant state of tetanus. Some of my muscles were so tight that I had pain in my tendons (especially the Achilles’ tendon) and the muscles of my lower legs. The peripheral neuropathy got worse too with numbness in my feet, pain my hands and feet, and a worsening of the fatigue. I also had little response to heat. I couldn’t feel if it was warm in the room. If it got too hot, I would just get nauseated but didn’t know it was hot. This Christmas was the worst in terms of fatigue. I really had limited activity because the pain the next day was unbearable. I have been reasearching treatments for this, both alternative and allopathic for years. I work in healthcare and have knowledge of alternative medicine too. None of this seemed to help. The allopathic treatments are very expensive (IVIG treatment, or plasmapheresis) or medication where the side effects are worse than the disease. The alternative remedies seem to be limited to doing everything you can to limit inflammation that the immune system is either causing or reacting to. Supplements helped for a while. Turmeric, ALA, Glutathione, Vit D, fish oil were just a few of the anti-inflammatory remedies that helped. Even CBD cream helped at times though I felt weird going into these dispensaries! I even did some cryotherapy, until the place I went to shut it down. Recently, since I was getting worse, I started researching the Wim Hof method and the Wahls Protocol. One had to do with sitting in an ice bath a lot and Wahls was a very controlled diet (which still looks very nutritious and I encourage you to buy her book). Before I launched into another attempt at helping my immune system, I wanted to take another look at the research. I remembered a neurologist having some success with antivirals/antibiotics because he was convinced this was not auto-immune but an infection that was just hard to eliminate and detect. Also, I read several studies looking at Human Endogenous Retroviruses (HERVs) as a possible cause to several conditions like MS, ALS, and Schizophrenia. The research is very new but proteins like MSRV-env have been found in MS patients at a
much higher level than healthy subjects… a little tiny blurb in the study said this was true with CIDP patients too!!! (If you want to see what damage proteins like this can do, look at another condition called POEMS)…Hello new theory!.. I even a found an experimental antibody therapy that was being researched by a biotech company. In short, I had a good working theory. What if, my own genome was activated by a viral agent (the HERV) and producing a protein that was not only triggering inflammation but binding to things like myelin (MSRV-env or something similar). At first I was a little disappointed in this causation… how do you stop your own body from producing proteins especially with new therapies years away? Then I remembered a guy from my old alternative research years. An engineer named Bob Beck was using his “silver pulser” to treat HIV, Epstein-Barr and Lyme Disease. After rereading some of his papers, I ran across a passage where his electronic therapy was shown to deactivate HIV envelope protein and kept it from being able to enter the cells. This got me curious because I HAVE an old Bob Beck device with which I make colloidal silver. So I dug this out of the closet, found the electrodes that go with it and started using this device for 2 hours a day. On the second day, about an hour after doing this therapy, my whole body seemed to relax and all of my muscles just sort of “sighed”. Over the last 2 months my fatigue has all but vanished, my muscles are no longer tense, feeling is returning in my feet, the pain is 80% reduced, my balance is better, my hand grip strength is back, my muscles seem to be responding properly to exercise and I have energy again! I have occasional pins and needles, and this seems to be reversal of the neuropathy! My theory now is that this electronic therapy inactivates viral fragments that are being produced by endogenous retro viral sections. I am by no means 100%, but at this rate I will be in a few months time. If you have made it this far in my recent journey then I thank you! I don’t sell these devices nor do I have any financial interest in them. The one I bought was 20 years ago from Sota Instruments. They still have a website and they call their device a Silver Pulser. Anyhow…this device has changed my life! I hope my experience encourages you to keep looking, try new things and see if something like this device will help.

Eric

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Hello Wolfgar/Eric

So glad to hear that you are making some great progress! It certainly sounds hopeful, and I hope the good news keeps on coming for you.

Administering and moderating a site like this can be a bit tricky. Here’s the problem: our guiding principle here is evidence-based conventional medicine. (The definition of that would consume many web pages, but let’s just say it’s treatments that have been proven to work in large scale experiments done and checked over and over again by a significant number of reputable medical researchers.) So I’m afraid you can’t use the word “cure”, even with a question mark. That’s why I’ve changed the subject line to something a bit less universal-sounding.

BUT (there’s always good news!) we all want to hear about your great news. Fantastic it is that this regimen is working for you and has given you such great improvements in your life.

And your last line sums it up nicely:

THIS! This is the true spirit of the community. Because your experience just can’t be referred as a cure (even with a question mark) I’ve edited the subject line and moved it into the “Complementary therapies” areas where it will be seen by those who are looking for other things, besides conventional medical therapies, that might possibly help them.

Congratulations, Eric, and thanks for posting!

Seenie from ModSupport

Wolfgar,

I would never reflexively denounce a prospective cure, no matter how unproven.

But I am leaning toward it in your case.
Side effects of the drugs worse than the disease? Really?

Leaning which way Jeff? I can only speak to my experience… but when you get desperate enough you would stick your head in a bucket of ice water for an hour if you thought it would help! And yes, Prednisone can be worse than the disease with weight gain and severe immune suppression.

Sorry to be rude.
I was paralyzed from the neck down for months, and given fatal diagnoses in error twice before getting the correct diagnosis at Mayo.
The idea that the cure is worse than the disease is ludicrous. To me, at least.

I say this with full acknowledgement of the side effects of the drugs. Maybe I should be more open to an alrernative!

No problem…someone else is accusing me now of advertising… sheesh… I hope you find some therapies that help you. My symptoms were mostly fatigue, initially… but I got drastically worse over the last 3 years. I was ready to try IVIG or anything really because I was about ready to think about walking devices or getting ready for wheel chair use in the near future. My life has changed… I can’t say I’m symptom free yet… I can only speak to the reversals I have had and how much better I feel.

Just a quick update to compare progress…last night I walked 2 miles. Three months ago this would have been impossible and doing just 1/2 mile would have left me a sweaty mess. My weakness was so bad I couldn’t do one pushup…last night I did 20! Still have some stiffness in my joints when I wake up. Is that because I’m 53 or from CIDP? Idk…when I stretch now, it actually seems to have an accumulative effect. The most notable change is that my hands when I wake up are not clenched into a claw…they are relaxed! I’ll keep updating as I see changes, either good or bad.

Eric

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