TNF-alpha receptor antibodies

[Levo Queen]

For the context, my fatigue and poor cognition were triggered by levofloxacin in Dec. '19. In 2020, I would get what felt like PEM from moderate mental exertion and stress. I came to a conclusion that 'floxing' results in a widespread autoimmune condition, starting with an oxidative stress. Some get mostly connective tissue damage, others, like me, get mostly CNS symptoms, some - neuropathy etc. Neuropathy and brain fog also occur as a result of chemotherapy, and TNFa is behind chemo-induced neuropathy.
So, in our Reddit community, someone reported a near-complete remission of connective tissue symptoms and twitching on Remicade: this post. Since neuroinflammation is clearly happening in my brain and TNFa may be involved, I was wondering if anyone improved on this drug class. I found some old posts, but maybe someone has a more recent info.

 

[Pyrrhus]

There's not much information on Remicade.

There's not much information about Etanercept either:

1) At the AACFS Seattle conference in 2001, Lambrecht reported on a pilot study using etanercept in 6 CFS patients. At the end of the 8-week trial, there were significant reductions in fatigue, muscle pain, headache, and lymph node pain. Exercise tolerance was improved. Unfortunately, this wasn't published and there was no follow-up to see if the patients worsened after that.

You may be interested in this discussion:

Anti-inflammatories may reduce symptoms in the short-term, but may not in the long-term
https://forums.phoenixrising.me/thr...hort-term-but-may-not-in-the-long-term.80492/

 

[Levo Queen]

Oops, the link appears broken. Let me try this way:
Floxie here (This might help you). Misdiagnosed with a type with spondyloarthritis and got treated with Remicade. Surprisingly enough, it worked. Here is my story (and my thoughts): : floxies (reddit.com)

 

[Zebra]

Since neuroinflammation is clearly happening in my brain and TNFa may be involved,

Hi, @Levo Queen. Interesting post, thanks!

Do you mind me asking if you've ever had a blood test to measure TNF-alpha levels?

And, if so, was your TNF-a elevated?

 

[Levo Queen]

No, I have been figuring out ways to get tested for whatever autoimmune markers. Having a tight and mildly deformed wrist at my age should help. Some floxies have elevated ANA and CRP (apoptosis, inflammation?). One reported low count of regulatory CD38+ lymphocytes. Another one with severe neuro symptoms, like seizures in addition to the more standard stuff, had oligoclonal bands in cerebrospinal fluid. As for TNFa, the levels may be elevated locally, in the gut or around a joint, and never show up in a blood test. For example, wounds may heal poorly near an aching tendon only. I have a spot of thinned, aged skin just near my wrist. TNFa is secreted by tissue resident cells like macrophages, fibroblasts, dendritic cells. There is a pretty good page about TNF alpha on selfhacker.com, which I posted in the floxies thread. But I will keep on looking for a specific test too.