I spent the day looking for a treatment for the encephalomyelitis I developed after a severe viral infection. It appears that TGF-beta (the immune system cytokine, transforming growth factor beta) levels suddenly shot up a couple weeks into the illness, back in April. TGF-beta antagonizes IL-22 (interleukin-22), which is one of the pathways for psoriasis. It also causes an autoimmune reaction to the optic nerve. This is what happened. I developed uveitis on the back of the eyeball, where it joins the optic nerve, and the psoriasis suddenly went away. IL-22 also protects the intestines against inflammation, and when it went away, bacteria and viruses suddenly started moving through the blood-brain barrier. I had a “Th2 shift” from autoimmunity to allergy, and an immune reaction to serotonin developed… I am showing demyelinating symptoms like nystagmus and Bell’s palsy. Antibodies to the 5HT receptor myelin are being created. The myelin acts as an insulator for nerve impulses in axons, and it is being degraded, so this is affecting electrical transmission in the nervous system. Multiple sclerosis is a demyelinating disease, and there are some similarities to this.
The immune reaction to serotonin basically means that I have become allergic to my own nervous system.
I was having an extraordinary psoriasis flare when I came down with the flu. Psoriasis sufferers say the one good thing about their disease is that they never get sick. Well I had psoriasis real bad and I got real sick. The result was an extreme amount of inflammation. Massive amounts of cells were killed. So there were dead cells all over the place, full of bacteria, viruses, and radionuclides like plutonium. My immune system suddenly shifted to clear these dead cells out (apoptotic cell clearance). (link) Macrophages came to eat up these dead cells. But the cell clearance facility was impaired. The dead cells started leaking out.
It has been known for 25 years that TGF-beta levels shoot way up with radiation exposure. TGF-beta also causes hair loss… when you hear that radiation causes hair to fall out, it is because TGF-beta levels are elevated in the hair follicles.
Myalgic encephalomyelitis was officially listed as a neurolgical disease by the WHO in 1969. In 1988, the FDA changed the name of it to “chronic fatigue syndrome”. This was in the wake of Chernobyl. CFS became a “wastebasket diagnosis” when a doctor that couldn’t find out the reason for the fatigue would diagnose it as CFS, even if it was really due to heart disease or for some other reason. The upshot was that when researchers attempted to find biomarkers for the disease, the ME people were mixed together with the CFS people, and no consistent results could be found. This was by design. The Russians knew from Mayak and Chernobyl that encephalomyelitis was a consequence of chronic radiation sickness. There is almost no money allocated by the government for ME/CFS research.
The pituitary tumor medicine which I was taking, which is an agonist for the serotonin receptors, caused a reaction, and I had to stop taking it. If the tumor gets huge again, and I have this disease, I am in uncharted territory. I have searched Pubmed and there are no case reports for such a thing. There is nothing for a doctor to base his opinion on. I know it can’t be good. Anyway ME/CFS has no cure or effective treatment by itself, either.
So the idea is to reduce TGF-beta… alpha lipoic acid is an antioxidant that seems to help. Pomegranate and oak ellagitannins also help, I have used these before for arthritis. Certainly reactive oxygen species play a large role in this, which are countered by antioxidants.
Phenibut helps a lot, but only for symptomatic relief. It is similar to baclofen and Lyrica, a GABA-B agonist. Phenibut reduces the release of 5-HT into the brain, and consequently reduces the immune reaction to it. It doesn’t deal with the cause of this, but it makes life manageable. It is not going to stop deterioration of the nervous system.
This has been an ordeal. When it gets bad, the brain fog, tinnitus, pressure & headaches are so bad that I can’t think. I have a difficult time with distractions, and even when there is absolute peace & quiet I find it hard to organize disparate bits of information, which is what this blog is all about. I am a programmer, and my whole career has been about mental focus and concentration. That is what has gone away. It is certainly scary, it is getting worse, and I know that 25% of those with true M.E. are bedridden and need care. It is easy to see how this could happen, and soon.
I will try to keep this blog going as long as I can, while I try to get a handle on this.