Hey mark,
I knew a lot about
nerves back then and what causes them to degenerate, but in hindsight I did not know much about
how to heal them.
My nerve journey has not been fun. Mine is autoimmune based on various blood abnormalities, and my brother recently developed an autoimmune condition, so it strengthens the case that mine is as well.
Unfortunately modern medicine does not have great ways of dealing with immune mediated small fiber neuropathy. The typical treatment for nerve related issues of an autoimmune nature is IVIG. It seems to only work for about
50% of people, however.
I have been on it for the past 2y and my nerves have done nothing but get worse. While I'm better on it than off, I still slowly progress on IVIG, just at a slower rate. It is clear that it is not strong enough for me, and the accumulated nerve dmage over the course of the past 4y is significant. At the time, however, it was unclear what else we could do to control the immune system. If you are one of the 50% that doesnt respond adequately to IVIG, well modern medicine just does not have a great solution. There is another member on here, runningwild, who has sjogrens neuroapthy and is on IVIG and its not doign much for him. At the same time, I have people in my support group who report being 95% healed on IVIG. Its dependent on the person.
We are now trying a completely new approach, an immunosuppressive agent that has never really been used for this disease or really any autoimmune disease, but I think will target exactly the antibodies at play. I am starting soon and since the hospital is really going out on a limb for me, and we are using it off-label and this is a very powerful and extremely expensive medication, I do not want to say much more about
it until we are certain it works.
The issue is that even if/when I correct the immune system, nerve damage is self-fulfilling. The more damaged the nerves are the more pain and localized neurogenic inflammaiton you get. So even if I right my immune system, it could be 1-3y before my nerves are healed enough that I am relatively normal.
For you, I assume your nerve damage is immune mediated?
If so, the place to start is IVIG. It's the first line treatment and a rather holistic one with very little downside. Convince a neurologist to give it to you, or go see Dr David Younger in NYC.
If lyme really is causing your neuropathy, consider Bicilllin shots. I know a couple guys who have lyme and SFN and bicillin works well for them.
If you have significant nerve damage like I do, then even correcting the immune system is not enough. Healing the nerve damage is hard.
The best place to start is a peptide called ARA-290. It really works wonders for some. It lowers inflammation at the nerve root and makes the nerve regrow. Buy it from peptide sciences. We did a poll in our support group and about
60% of people responded to it. I'm a hyper responder, it takes away my pain and numbness rapidly, but unfrotunatey i also have psoriatic arthritis and i cannot handle most supplements or peptides, and unfortunately even tho it helps my neuropath significantly, ara-290 is a trigger for my arthritis, so i only use it when absolutely necessary. But this is a response specific to me. I would highly recommend buying some and trying it, if you are a responder its a game changer.
I've gone deep in the weeds on alternative ways to regrow nerves. There is a compound being researched out of case western called NVG-291. They are actually now doing trials w/ the Christopher Reeves foundation in spinal cord injury. Results in animal models are unbelievable. I spoke w/ the researcher, it regrows peripheral nerves as well. It works on the CSGP/PTPsigma pathway. There are several other ways to attack this pathway, and all lead to nerve growth, so the theory is sound.
We are doin a custom synth of this compound, which should be ready in July.
There is another way to regrow nerves using HDAC6 inhibition. It literally rebuilds the tubulin to the nerve so that the nerve gets fed again and the axon comes back to life. There is a company called regenacy working on a compound to do exactly this. We are in the process of custom synthesizing this one too.
https://regenacy.com/I mentioned in that original post about
pirenzepine. M1 receptor antagonism is also another way to cut at the onion and force nerve growth. Unfortunately the M1 recept is cholinergic, and all anti-cholinergics have side effects. I spoke w / researcher at stanford exploring this. It works. I actually was able to get ahold of pure pirenzepine powder and make my own transdermal microemulsion using a concoction of surfactants and solvents a chemist helped me with , but unfortunately the side effects, dizziness and double vision were just too much.
But long story short, is there are things in the pipeline to regrow nerves. But you need to get the immune system in check first and stop new damage from accruing before you worry about
healing old damage. My recommendations:
1.) If you are certain lyme is causing your immune dysfunction, get on Bicillin LA 1.2m units immediately
2.) You will still likely need to calm the immune system, and your best bet is IVIG. David Younger is the guy everyone goes to to get insurance approval. He's expensive, but can help "convince" insurance to give you ivig.
3.) Get on ARA-290 immediately. If you are one of the 60% that responds, it is worth its weight in gold
Post Edited (dcd2103) : 6/5/2023 6:02:05 AM (GMT-8)