Ok so I'm seeing a lot of people on this board w/ nerve problems, so I figured it makes sense to do an in-depth look at nerves once and for all. Anatomy
Firstly, we need to look at the anatomy, so we understand what is hurting and what isnt.
Broadly speaking, there are two classes of nerves. Large fiber and small fiber.Large fiber
: Typically motor nerves, problems with large fiber nerves can cause weakness, motor issues, pins and needles and numbness. Causes include autoimmune (eg CIDP, GBS, MMN), or some sort of toxic insult like chemotherapy, nerve compression, cipro, or vitamin deficiency (rarer)Small fiber
: Sensory and autonomic nerves, they can cause burning, buzzing, loss of sensation or temperature perception. Causes include diabetes (number 1 cause), autoimmune (eg sjogrens and lupus), autoinflammatory (lyme, celiacs, mold), toxicities like b6, chemo, floxxing and a whole host of other causes. My rule of thumb is if you feel buzzing or burning, its more likely small fiber. Pins and needles tends to be large fiber.
These rules dont always hold, but its pretty accurate.
Here is a simple easy to understand the infographic that illustrates this:https://ibb.co/xfxlsty
You'll notice that there are two types of unmyelinated C nerve fibers, sensory and autonomic. This is the reason why people with small fiber neuropathy often have dysautonomia, and vica versa. They are both the same type of nerve! Whatever attacks one often attacks the other! For a lot of us w/ burning or buzzing pain, the c-fibers are what you need to pay attention to.History
CIDP and large fiber neuropathy have largely been recognized and understood for a long time. Insurance will typically cover immunotherapy for this type of disease.
Small fiber neuropathy, however, has a much shorter history. For a long time medicine did not recognize small fiber neuropathy as a disease. It was not until Dr Annie Oaklander at Mass General started to bring attention to it 5-6 years ago with her "Small Fibers Big Pain" paper that it's finally being recognized. She estimates that more than half of those with "fibromyalgia" actually have Small Fiber Neuropathy. about
half of the cases are caused by diabetes, and something like 30% of the rest being autoimmune, w/ half of the remaining 20% she guesses are actually autoimmune, but with no clear evidence, what she calls "apparently autoimmune". I should note that small fiber neuropathy is a symptom, not a disease in itself. Insurance typically will not pay for IVIG or immunotherapy for small-fiber, as the studies have not been done for FDA approval.https://neuropathycommons.org/sites/default/files/oaklander_nolano_sfn_2019.pdfStandard Treatment
Typical standard treatment for neuropathy depends on the cause. For severe autoimmune/autoinflammatory flavors requiring immunomodulatory intervention, IVIG is the standard of care. It is not immune-suppressive and usually helps. Cellcept, Rituxan, and Azathioprine can sometimes help. Cyclophoshamide works very well, but runs huge risks. Cytokine inhibitors like are used for RA do not work.
For diabetes, managing blood sugar works best.
For toxic insults and any neuropathy really, b-vitamins and Alpha Lipoic Acid help to induce nerve growth, to some extent.
Damaged nerves tend to hurt, and it often happens in spasms, where they all go off at once. Similar to a seizure of the brain, it is like a convulsion of the nerves, and this is why anti-convulsants like gabapentin help.How To Regrow The Nerves
First off, its important to state that there are two types of nerve damage. Demyelinating, and axonal. With demyelinating, the nerve sheath is attacked and damaged, but the nerve survives. With axonal, the axon dies, and the nerve cannot regenerate. Most autoimmune diseases are demyelinating, although if the insult goes on long enough, axon death can occur, and there are axonal autoimmune diseases, such as certain variants of CIDP and Guillain Barre.Nerves regrow.
If the damage is demyelinating, it will heal if you remove the toxic insult. It may take time, sometimes years, but the nerves will regrow. If the damage is axonal, it can be permanent. This is why you see people with chemo-induced neuropathy, for example, say that nothing helps.My best advice to anyone suffering from neuropathy is to get your immune system and your diet in order.
Mary Ruddick has taught me that ketosis, and high fat diets are extremely nourishing to the central nervous system, and I've seen it first hand. You want a very high fat (70%), lectin-free ketogenic diet. Drink meat broth with healthy fats added all day. You can throw in some b-vitamins and ALA. In time you WILL heal.
But there are people who have too much damage for that, are completely numb, who want results quicker, or just need some extra help.
There is a company called WinSanTor who is working on a drug to regrow small fiber nerves. It's been proven to work for diabetes, HIV-induced and chemo-induced neuropathy, but the expectation is that it should work for any kind. I hear that the product works, and it will eventually be rolled out in 2-3 years, once they can fund a larger phase 3 trial.https://grantome.com/grant/nih/r42-ca213555-02https://www.jci.org/articles/view/88321https://winsantor.com/our-solution/https://news.infernalscoop.com/bldmrchttps://www.baltimoresun.com/sd-me-neuropathy-winsantor-20170117-story.html
The way the product, Pirenzipine, works is quite remarkable. It is an ANTI-cholinergic. Acetylcholine is a neurotransmitter used in many bodily functions. Typically one associates anti-cholinergics with breakdown of fatty membranes and alzheimers. WinSanTor has discovered a remarkable property of the nerves, whereby the M1 receptor actually inhibits nerve growth. They call it "cholinergic restraint". Pirenzipine disrupts the M1 receptor, thereby allowing for unlimited nerve growth. I take this to mean that the body inhibits the nerves when the M1 receptor is firing, but as soon as it slows down, the body says "oh boy, must be a problem, lets grow them nerves". It's a paradoxical response, as one would expect an anti-cholinergic to lead to breakdown.https://pubmed.ncbi.nlm.nih.gov/28094765/
In my desperation, before I started healing, I wanted to figure out how I could take advantage of this without waiting 3-4 years, as it was too painful to keep my sanity for that long. There are several options. Firstly, WinSanTor's product is for TOPICAL pirenzipine. Oral Pirenzipine already exists, and you can order it from Japan. I have done this and have it sitting here. It's totally legit and legal. The reason WinSanTor is looking at topical is because only about
1% of it is absorbed systemtically. The topical has ZERO side effects. The Oral can cause some pretty funky upset stomach issues. I have spoken to people who are using it orally, and many claim it works amazing. Others say it flared their autoimmune issue. That is the risk with oral. You could also crush it up and mix it into a tub of DMSO and absorb it topically, if you were desperate enough.
The other option I found out by just cold calling numbers. I was able to get the name of a person, I wont say who, who was involved in some similar research, but not at the company. I was trying to find out if there was any way I could mimick this reaction at home, as I was very desperate. This person was very friendly and was very optimistic about
the future of neuropathy treatment, and said that if I were that desperate, there is a product on the market which affects the M1/M3/M5 receptors. It's called Oxybutynin, and I should get a 3% compounded prescript
ion. It would do everything that pirenzipine does (since its M1), but also might cause some unwanted side effects (like dizizness) since its M3/M5, and to use it only at night. There was a study done on Oxybutynin in SFN and it was successful. It's used for overactive bladder, so I assume its quite safe, although I was warned not to use it for too long, just in case.https://diabetes.diabetesjournals.org/content/67/supplement_1/58-or
An anecdotal reporthttps://search.proquest.com/openview/981503a69793ba0ca6338bc10bfa98c6/1?pq-origsite=gscholar&cbl=1896353
I have NOT tried this, as I said. I am healing naturally and dont think that I will need it, not yet at least, but i may in the future. But if people out there had significant nerve pain and nerve damage, its something to consider. I should note that if you were to try this product without stopping the insult, the autoimmune or toxic attack, you will likely find yourself in more pain, as the nerves continually try to heal and then get damaged again. And I have heard this feedback from others in an autoimmune group.
Outside of this option, there are two other products that may help. Araim Labs is working on a product called ARA-290. It is a peptide and you can buy it compounded from CanLabs.com. I have heard mixed reviews. The other one is another peptide called Cerebrolysin. You can find it online. A friend is trying this an anecdotally reports good results, but thats one datapoint and I wouldnt trust it.
With respect to dysautonomia, which is another nerve issue, I have heard from this NP I'm working with that St Johns Wort will help regrow the stomach's autonomic nerves.
In addition, there is a peptide called BPC-157. I've talked about
this one before. It's called Body Protection Peptide, and is one of the peptides that people seem to really say works. It's used to heal connective tissue from injuries and supposedly actually helps heal the gut lining, even ulcers. But anecdotally I came across a reddit discussion about
how it helped some people's dysautonomia, which I found interesting.https://www.reddit.com/r/peptides/comments/ipibsj/bpc157_and_dysautonomia/
I hope this helps someone.
Post Edited (dcd2103) : 11/24/2020 5:41:09 AM (GMT-7)