So I'm slowly piecing together what I think breaks down and perpetuates a lot of chronic illnesses, and I keep coming back to two things: primed micro-glia, and autonomic dysfunction.
Rather than explain the theory, I'll talk about
how I arrived at this conclusion for myself. I have "autoimmune small fiber", likely triggered by an infection. The typical western medicine treatment is to treat the immune system. IVIG, steroids, etc. I went on IVIG, and it didnt work that well. I ultimately shut off the burning by goin on a ketogenic diet. Burning stopped very quickly. Clearly this was stemming from my gut. The problem, however, is that I still had other symptoms. Frequent urination, exercise intolerance, damaged nerves, buzzing senation, electrical shocks. The burning was by far the worst, and I was glad to be rid of it, but I had a lot of other problems.
I then started to read about
CRPS. CRPS is very similar to small fiber neuropathy. If you were to draw a venn diagram of symptoms and physiological changes, it would overlap by probably 80%. The same mechanism of action must be at play. Well what happens in CRPS? They think that the micro-glia in the brain get primed. This causes them to release cytokines, which make the ion channels fire gluamate and damages the nerves and autonomic nervous system. So I started looking into ion-channel antagonists...ketamine, agmatine, nifedipine, mexilitine. I tried them all, they all reduced my symptoms but had side effects. I 've finally landed on memantine, an alzheimers drug, and its working. I'm only a week in, but I've had the most peaceful week I've had in 2.5y since this began. Ah....
So then I started thinking more. My first problems in 2014 were "vestibular migraines". One Dr described it as "seizure-like", he felt I was having mini-seizures. So I started reading about
seizures. What causes them? It's excess glutamate. Likely primed-glial cells, called excitotoxicity, the same thing that happens in CRPS. Same thing also happens in Alzheimers. Then I remember that Dr Younger, an LLMD/neuro in NYC ran a PET MRI for me, and it showed "hippocampal volume loss". What causes the hippocampus to shrink? Excitotoxicity. You see this on PET MRIs of kids with seizures, adults w parkinsons, adults w alzheimers. Clearly I have micro-glial activation which is causing my neuro-inflammation and excitotoxicity.
What aggravates the glial cells? Neuro-toxins like mercury, brain infections like lyme, and apparently from what I'm reading so does stomach infections like SIBO. Treating the stomach with keto and the ion-channels with memantine is really the only thing that has yielded results for me. But I still have some other symptoms, like fatigue, some residual anxiety, etc.
I then happened to come across an article on Robin Williams. They think that he likely had a form of demetia that overlaps w/ alzheimers casued by lewy antibodies. But the article also mentioned how he had a form of dyautonomia. And it occured to me as well...like glial cell activation, this dysautonomia is something which is common in a lot of these seemingly disparate disases. CRPS, SFN, POTS, CFS, MCAS, chronic lyme. They all suffer from dysautonomia.
This lead me to thinking about
how my own sympathetic nervous system is completely destroyed. Anxiety, constant fight-or-flight, etc I recalled how I attempted to do Wim Hof breathing/ice bath, which really is a way of stressing the sympathetic to induce tolerance, and I immediately would get pins and needles and increased buzzing. My sympathetic is destroyed. Much worse after I got sick, but even as a child I remember it was highly on edge. It seems like so many high-strung people seem to get sick.
I was spending time on Dr Nemechek's website today, the big dysautonomia guy, and I keep seeing these same things pop up as well. Dyautonomia activates SIBO activates the glial cells which activates neuroinflammation, and around she goes. He even ties it all in to alzheimers as well.
His treatment approach is basically what I've been doing/trying to do: extra virgin olive oil, inulin, rifaxamin, vagus nerve stimulation. These are some of the big things I'm hitting hard (except for VNS, which I had just ordered), in addition to keto and more microbiome control and the memantine.
https://www.thebrainpossible.com/treatments/nemechek-protocolhttps://www.nemechekconsultativemedicine.com/blog/reversal-of-alzheimers-dementia/But anyway, thanks for reading my rambling thoughts. Not really sure what my point is. Everyone knows inflammation is a common theme in illness. But I guess my point is there is this feedback loop between the autonomic nervous system, the gut, and the microglia, and when anyone part of that triangle goes, the whole thing breaks down.
I also think that, like in my case, once that nervous system becomes damaged, THAT becomes the part of the puzzle that perpetuates the cycle. So you'll see people on here get an infection, clear it, and theyre still sick. And theyll go after that infection. But maybe its not hte infection anymore. Maybe its the atuonomic damage. And the primed micro-glial. And the gut dysfunction which is perpetuatly keeping the micro-glia angry which is perpetually triggering the autonomic nervous system.
Just some food for thought. But as such, was curious if anyone had any ideas for fixing dyautonomia outside of DNRS?
I'm really intrigued by what they do at the Spero Clinic. This is really pretty novel stuff. Guy there was telling me they do stuff like dunking your hands in cold water while connected to biofeedback, to try to teach you tolerance and reduce the sympathetic response.
These are the things I've come up with:
For Autonomic Dysfunction:
Stellate nerve blocks (going to try this soon)
Ceraset
Vagus Nerve Stimulation Device (ordered one)
DNRS (didnt work for me)
Wim Hof (but only once youre healthy enough, makes you worse if your ANS is too broken)
Meditation (helps me a little)
Hand Warming Biofeedback (helps a little)
n acetyl selank
For glial cell activation:
minocycline
LDN
IVIG
For ion-channel hyperexcitablity:
any ion-channel antagonist like memantine or ketamine
Again, thanks for listening to my rambling thoughts.
Post Edited (dcd2103) : 3/7/2021 4:19:33 PM (GMT-7)