3 ms·

I have multiple TNXB SNPs, tested very high IQ, and have debilitating levels of inflammation with ME/CFS. Wasn’t so bad when I was younger but got really bad in

I have multiple TNXB SNPs, tested very high IQ, and have debilitating levels of inflammation with ME/CFS. Wasn’t so bad when I was younger but got really bad in my 20s and 30s. I have it under control now with quite an exotic mix of medications. My memory is pretty insanely good as is my ability to learn new things. I had previously thought it was due to interest and acumen but have come to accept that I am fortunate in ways that others are not - the difference being that I no longer blame others inability to learn as much or as quickly on an apparent laziness or lack of interest. ME/CFS is very debilitating though so most people with this will probably just fade away in their 20s and 30s. There are ways to treat it that I wish more people knew about. Edit; I should mention that too much inflammation is associated with brain fog which inhibits working memory and memory formation. Brain fog is one of the many core symptoms of ME/CFE. It would make sense if the body is optimizing childhood learning over long term health.

wburglett 3y ago
What approaches are there for treating ME/CFS?
- cjbgkagh 3y ago
  It depends on the cause but for the TNXB subset which is probably a big chunk of them there is hGH peptides, Testosterone replacement therapy (TRT), low dose modafinil, amitriptyline, IGF-agonists (semaglutide/ozempic), low dose naltrexone (LDN), TUDCA, eliminate sugar (including fruit) from diet, melatonin, UV-A light therapy in eyes during the day, blue light blocking glasses at night, sleep hygiene, lower stress lifestyle, supplemental T3 hormone, caffeine, and resistance exercise. Cardio above a fast walk should probably be eliminated due to post exertional malaise (PEM). The cause of PEM is a tough one that I’m still working on.
  - wburglett 3y ago
    For PEM specifically have you had any experience with pyridostigmine or cumin (the kitchen spice)?
    - cjbgkagh 3y ago
      I’ve tried Enalapril which seems similar to Pyridostigmine, I ended up with pretty strong blood pressure swings. I’ll check it out though. The problem with testing PEM for me is the extreme downside if the test fails, it could be many months before I’m good again. Instead of trying these things myself I’m more apt to crowd source from people who I know that also have PEM and more open to testing it.

wburglett 3y ago

What approaches are there for treating ME/CFS?

cjbgkagh 3y ago
It depends on the cause but for the TNXB subset which is probably a big chunk of them there is hGH peptides, Testosterone replacement therapy (TRT), low dose modafinil, amitriptyline, IGF-agonists (semaglutide/ozempic), low dose naltrexone (LDN), TUDCA, eliminate sugar (including fruit) from diet, melatonin, UV-A light therapy in eyes during the day, blue light blocking glasses at night, sleep hygiene, lower stress lifestyle, supplemental T3 hormone, caffeine, and resistance exercise. Cardio above a fast walk should probably be eliminated due to post exertional malaise (PEM). The cause of PEM is a tough one that I’m still working on.
- wburglett 3y ago
  For PEM specifically have you had any experience with pyridostigmine or cumin (the kitchen spice)?
  - cjbgkagh 3y ago
    I’ve tried Enalapril which seems similar to Pyridostigmine, I ended up with pretty strong blood pressure swings. I’ll check it out though. The problem with testing PEM for me is the extreme downside if the test fails, it could be many months before I’m good again. Instead of trying these things myself I’m more apt to crowd source from people who I know that also have PEM and more open to testing it.