ARA-290 for nerve pain

So first to recap/update everyone on my journey:

Autoimmune neuropathy after stomach infection/parasite in central america. Was on IVIG for 9m, helped reduce the burning by about 50%. Didnt have any permanent damage at this point. Developed serum sickness and had stop for almost a year. Pain explodes, I'm bed bound, developed permanent numbness and what i think is CNS damage.

Met Mary R. Went ketogenic. This stopped the burning in its tracks. Clearly have a stomach dysbiosis problem (found a paraste in stool test, blasto, feeds on sugar, makes sense why keto works). This improves my pain about 40% this time as well. Even though immune system is much more under control than a year prior w/ the IVIG, there's permanent damage this time. The nerves are damaged and angry all the time. The dorsal horn of the spinal cord is damaged, creating permanent buzzing sensation and excitatory ion channel buzzing sensations. Mary R says this will heal over time, and I believe her.

We work to fix my vitamin deficiencies. I'm deficient in b12 (low 300s). Quest Diagnostics says right on the report 10% of people < 400 will have neurological problems. No dr mentions this to me. Even if this isnt the cause of my nerve pain, they cant heal if i'm deficient. I also noticed all of my fat soluble vitamins (A,D,E,K) are low, I'm not digesting fats. Add in fat soluble vitamin complex and digestive enzymes. This seems to start helping, I noticed buzzing pain is a little less. I'm maybe at 45%

After reading the book Breath by James Nestor and using the Waking Up app by Sam Harris, I begin to learn how to properly meditate. This has had a dramatic affect on my sympathetic nervous system. I liken it to DNRS, and I'm learning how to break that pain up-regulation feedback loop using mindfulness and breathing. This was worth at least 5-10%, lets say I'm at 50%.

I start researching CRPS/ion channel problems, and I realize that the buzzing sensation is coming from my spine. Ketamine helps with these issues, and I go for a series of 4 infusions. They work dramatically. I'm now feeling 80% better. Unfortunately the effects wear off pretty quickly, outside of some positive influence on my mood and pain perception. I'm back down to 55%

about 2 weeks ago I begin NAD+ infusions and about 7-8 days ago ARA-290 injections (also called Cibinitide by Araim Labs, I got it compounded by my regenerative medicine dr, even though its not out yet). It's too soon to declare victory by any means, but I do feel a noticeable improvement. Past 5-6 days my buzzing is almost gone an the electrical sensations are gone. Cant say if its from the NAD or ARA, unfortunately made the mistake of trying both at once, but I have a sense the ARA may be playing a role. I'm going to put myself at 70% right now. I was not expecting the ARA to do anything, i assumed this was another "too good to be true" miracle cure that wouldnt do anything. Will keep people posted as this evolves, I've been duped many times before, and its only been a few days I'm feeling good, could be a blip (i tend to get excited when i feel good), but I really know my body and I notice a difference. The buzzing is relentless, so for it to calm down is significant. I'm cautiously optimistic at the moment.

https://www.prnewswire.com/news-releases/araims-cibinetide-in-inflammatory-and-autoimmune-diseases-increasing-evidence-for-immune-modulation-and-pleiotropic-benefit-300649161.html

http://www.araimpharma.com/cibinetide-ara-290-regenerates-small-nerve-fibers-neuropathic-orphan-disease-sarcoidosis/

Post Edited (dcd2103) : 2/9/2021 5:06:21 AM (GMT-7)

potsnpans said...

dcd said...
... using the Waking Up app by Sam Harris

Hey I use his app too!

Thanks for sharing.

I think I have listened to a couple of podcasts where he was a guest and was impressed

downloading the app now

Hey lifesux!

So 3 weeks in I noticed that my kidney numbers had risen. I get them tested periodically it’s always something i keep tabs on being on IVIg in the past and in ketosis. Well they shot up quite a bit. They were always fine before that, and ARA is the only thing I was doing differently. It’s a synthetic form of EPO, which is made in the kidneys...in theory it’s speculated to help kidney function....but I saw ARA+kidneys in the same sentence too many times and freaked and stopped.

The numbers have since returned to normal. It’s unfortunate because it was really helping the numbess and electrical zaps. Numbess is still better than when I started the ara.

I’m not gonna restart for now. I’m still doing well in ketosis and have added in an ion channel antagonist called Namenda for a little over a week which is helping to keep the buzzing sensation and electrical zaps down. I really quite like it

Post Edited (dcd2103) : 3/7/2021 7:07:30 PM (GMT-7)

I did. 4mg/day w a diabetes needle into the stomach fat

Hey dave,

Doest have to be blasto, but could have been. Any stomach infection can throw your stomach off. And once the stomach goes, I've noticed the neurological system often goes too. The brain controls the gut through the vagus nerve, and the gut talks to the brain through various peptides and neurotransmitters like serotonin. Once either goes, the other does too. It's two sides of the same coin. This means that if youre having neurological problems, healing your gut is key. It also means that you will likely have autonomic dysfunction, which needs to be addressed as well.

I havent treated the blasto yet, we actually plan on starting next week. Waiting for the final plan from my natuorpath. She's mentioned in the past that she likes wormwood, black walnut and neem for those with neuropathy. As I'm sure you know, everything flares us. Berberine is another option. Things like Oil of Oregano and Garlic are just too strong for us. I think I will start w/ the wormwood, black walnut and neem and see how it goes. I may also add in Rifaxamin, as i love this antibiotic and its very easy on me. When that protocol is done and i have my gut bacteria levels in check, i plan on starting Mutaflor probiotic. Its a great pro-b that i'm hoping will be able to maintain the ground i take back from the bad guys, but unfortunately last time i could not get it to colonize, there was a bit of struggle down there between the mutaflor and the bad bacteria. Hoping to get it to colonize after the anti-microbial treatment lowers my microbe levels.

Once the gut is healed, i'm thinking the neuropathy should improve quite a bit more. Ketogenic diet is the only thing i've really dont to make a lot of progress. I did think the ARA helped for the brief stint i was on it, very upset it screwed up my kidney numbers.

I'm lookin into a host of new treatments and ideas now. I will eventually figure this out and heal this completley.

One thing i'm looking into is the neufit newbie. It's a neuromuscular stimualtion device used to stimulate muscles. Great for people who have neurological disease who have lost control of parts of their body. It's the only DC current device out there, as they've figured out how to get the voltage high enough w/o burning the skin. I've met some people who are actually using this device to stimulate not just the muscles (and the large fiber nerves that innervate them), but also the small fibers and the autonomic nervous system as a whole. I've met a couple people suffering from CRPS, a related disease, who have healed completely. I am hoping to rent one and begin my own neuro-muscular/autonomic re-education program at home.

Post Edited (dcd2103) : 3/16/2021 5:47:16 AM (GMT-6)

Yah that makes sense. Def need to figure out what’s causing it. I don’t have a strong opinion on IgeneX vs Galaxy other than to say my buddy w neuropathy like me just got his IgeneX results and he was positive for both. Gun to my head id prob go IgeneX. Bart really is a ****** and I feel like it causes some serious neuropathy.