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Anyone here dealing with peripheral neuropathy?

Neuropathy | Last Active: Apr 25 1:31pm | Replies (2916)

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@jesfactsmon

I have read the Connect posts to this question posed by @rabbit10 from April 2016 to Sept 2018 (the point where I am now) and I have to say my heart goes out to all you pain sufferers. PN is a horrible affliction. And so many try drugs and are disappointed (except a very few). My wife Linda has had PN since her chemo in 2014. I have been her caregiver since then. It happened just after the 2nd round and at that point she decided to quit chemo. After 4 occurences of breast cancer and surgeries for same over 3 years (2012-2015) she finally arrested it herself by taking Haelan951 (easily fouund online, it is a miracle for cancer of all kinds). She has since had no new outbreaks for over 4 years, to the surprise of her favorite Vanderbilt cancer surgeon.
Anyway, the neuropathy is now her biggest issue. She gets burning feet every day. Periodically she also gets a deep, insanely intense deep itch. She has found significant relief from the itch using a Sonicare electric toothbrush, the vibrations from which get down deep to that itch. But we think that the itch issue may be more from fibromyalgia and perhaps not neuropathy, but who knows and anyway its all nerve-related, right? For the burning she uses a fan blowing on her feet and she must keep the air conditioning at 66 degrees in the summer or she suffers (she loves winter now). She maintains a clean diet and takes a lot of supplements, including a lot of the ones everyone recommends for PN (R Lipoic, Benfo Thiamine, Acetyl L Carnitine, Omega 7 and at least 2 dozen more). She does not excercise much though she knows she should. She just doesn't have any energy most of the time. In doing research online there are a couple things I have found that sounded promising but which we have not been able to try. One is tetradotoxin, which is a substance taken from a pufferfish and is showing promise in relieving PN for up to 10 or 12 weeks at a time. Last I heard it was in phase 3 trials. I communicated with someone working on the study who said it could be years before final FDA approval, but it does sound promising. Search tertrodotoxin for peripheral neuropathy to see links referring to this. Here is one by the company developing it:

http://www.wextech.ca/pdf/poster/24-AAN%202016%20SAG.pdf

Another thing I came across at one point was Calmere Scramble therapy. It is a device, developed in Italy, that seems to arrest or reduce PN pain after a 2 week treatment regimen. The problem with it is that the device costs over $100 thousand dollars. There are a few medical facilities that have the device and offer this treatment around the country (we don't live near any of them) but I found one place in W. Hartford, Ct. that say they will do it for around $5000 but you would also have the cost of staying there for 2-3 weeks. And if it lasts 10-12 weeks it means you would need to return for further treatments. But apparently some people have sworn it has helped them. Here is a link:

http://calmarett.com/

Another thing we got for Linda is an Infrared light, well two different ones, actually. She used them on her feet for a couple months but stopped after she upped her sessions from 15 minutes to 20 minutes and felt she was getting burned. So this has not turned out to be too promising as yet.

Linda would like to try medical marijauna but it is illegal in Tennessee right now. Hopefully that will change soon. She has tried cbd oil and has also tried kratom, but has not been helped by either.

After reading through the first 68 pages of this website, one thing that sounds promising to us is Bob Diamond's protocol on Facebook which @johnbishop has mentioned. My wife wants to try this out soon. The only thing that worries Linda is the high (1200mg/day) dose of r-lipoic in the protocol. She has trouble tolerating the 240mg Life Extension pill she takes now, as it makes her nauseous. But she is going to give it a try anyway. She is so ready (as am I) for her to be able to have her life back. She is unable to travel to see my 98 year old mother whom she loves because of this ridiculous problem. She wants to be able to get out and do things again. She knows she is better off than many who suffer from PN but it's not any fun for anyone. If I find out anything new in my own research of PN I will let you all know about it. Best wishes to everyone.

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Replies to "I have read the Connect posts to this question posed by @rabbit10 from April 2016 to..."

It is very nice to hear your input . You are obviously very dedicated to your wife to read through all those posts! Thank you for sharing your thoughts and her experiences with us. Welcome to you and many well wishes to Linda.
Rachel

@jesfactsmon Hi Hank, So sorry about you and your wife. So hard on both of you. I have severe peripheral neurapathy in my feet, with throbbing, burning, stabbing, contorting...on and on. Just to let you know, I have tried Scrambler therapy here in Illinois. It was 150.00 per treatment, for 10 treatments. Although it helped, it only did so for about 3 weeks. The second round of scrambler therapy barely helped at all. However, I know that people from all over the country come to this Illinois clinic, as the man who does it has good success. It is Spero Clinic of Illinois. There is only one Scrambler/Calmare therapy clinic in Illinois, and he is the one. As far as Kratom, go to Happyhippoherbals.com and try their Slow Strain Kratom. It does work for pain, and is approved by the American Kratom Association. Kratom is not created equal, by any means. There are strains that do utterly nothing. But the slow strains of Kratom, from Happy Hippo, do work. Especially if they note it for body relief, or any reference to making the body feel better. They never claim that Kratom helps with pain, I think for legal reasons. I find Kratom to be the best pain reliever. Not the capsules. The disgusting, vile tasting powder. It is the real deal, and works. Just thought this might help you. This illness is just a bear. Has totally disabled me. Pisses me off terribly. Makes me terribly sad. Mine started right after breast cancer also, but I never had chemo. I only had radiation. Go figure. Anyway, best of luck...… Lori Renee

@jesfactsmon
Hi, Hank. I, too, have chemo-induced peripheral neuropathy. I note from your post that Linda is taking R-Lipoic Acid (the more bioavailable form of Alpha Lipoic Acid). Recently, Mayo did a webinair for those of us with CIPN and the director of palliative care (and an oncologist) at Johns Hopkins noted that Lipoic Acid likely makes CIPN worse. It also was mentioned that some people found relief from Scrambler Therapy. I personally did not and it likely was because my treatments were handed off from the physiatrist to her assistant/receptionist. (There is no way to anticipate this practice, but apparently a busy physiatrist has no time for such things, even for very expensive procedures which are not reimbursed by insurance...*sigh*) Some people also find relief with acupuncture. Again, I did not.

You may want to check out the recording of the webinair (if possible) at

https://register.gotowebinar.com/recording/viewRecording/5174813403335669772/4656725724123053839/

Like Linda, the cold is my friend. As I am unable to take the usual meds for peripheral neuropathy, I then turned to Chinese medicine. My acupuncturist gave me a wonderful herbal pill, traditionally given to post-menopausal women to prevent hot flashes. It was wonderful for the CIPN but later was found to be raising my red blood cell count so I discontinued it.

Next, following a lot of research, I came across Palmitoylethanolamide which, at the time (2018) was being used by some neurologists in Europe for CIPN. It now is easily available on Amazon as it is being more widely accepted by American neurologists (especially for those of us who are sensitive to pharmceuticals). It's an endogenous (natural to the body) fatty acid amide with no side effects or drug interactions. It does nothing for the numbness and loss of balance, but it has overcome the pain and burning for my feet, legs and hands. I take three 400mg capsules throughout the day (1,200mg total) which allows me to go shopping, visit friends, drive, do housework, etc. As Linda probably has noted to you, every month or two, the CIPN gets worse for a few days. At those times, I take a capsule or two more during the day until the phase passes.

I send my best to Linda and you.