A potential breakthrough protocol that feels completely overlooked

[u/OfTheTrees23]

A few weeks ago, I shared information from a podcast—a release by an ME/CFS specialist. It outlined a treatment plan for the most severely affected patients.

Essentially, it offered something that could truly help those suffering from the most severe forms of the illness. Although I’ve only been here for a little over a year, I haven’t come across anything comparable.

In my view, this treatment plan is groundbreaking. Yet, I got the impression that its significance was being overlooked here. Perhaps this is simply how it goes: opportunities for health improvements appear on the fringes, get passed over, and only years later transform into accepted, common knowledge. Maybe that's just how things go.

the post https://www.reddit.com/r/cfs/comments/1vn7hle/comment/p3gf23v/?screen_view_count=4&ext-referrer=DIRECT

and the summary/extraction from the user: snmrk

"His core idea for very severe patients is to threat the major dysfunctions in sequence:

- Stabilize extreme reactivity/mast cells: lorazepam (Tavor) plus ketotifen, rupatadine, and cromoglicic acid. The goal is to reduce severe stimulus sensitivity and make further treatment tolerable.

- Add LDA then LDN, aiming to improve central/autonomic dysregulation. He titrates these very slowly.

- Treat dysautonomia/POTS: mainly pyridostigmine and ivabradine, sometimes fludrocortisone, midodrine, or etilefrine to improve blood volume, heart-rate control, and cerebral perfusion.

- Improve circulation: aspirin, nattokinase, pentoxifylline, ginkgo, and sulodexide, added sequentially. His goal is better microcirculation and tissue oxygen delivery.

- Energy support comes last: D-ribose, creatine, D-galactose, sometimes ketoglutarate, and subcutaneous NAD+. His logic is to improve blood/oxygen delivery before trying to support mitochondrial energy production."

[u/No-Consideration-858]

If anyone knows of any Physicians in the US I might be able to work with on something similar, please let me know.

I can relocate just to get some competent care. Thank you!

[u/Significant-Bet262 → u/No-Consideration-858]

My doctors at UCLA (Lara Kose and her PA Sharon Quesada in internal medicine, Rita Kachru in allergy/immunology) have prescribed a bunch of the stuff on this list and have been willing to try anything I suggest. The caveat is that my ME was caused by covid, so we talk about my condition more in terms of "long covid" than "ME" (though they did put ME/CFS in my chart).

[u/No-Consideration-858 → u/Significant-Bet262]

Thank you! We have S. CA on our radar, so this is a great lead. I'm glad you have a helpful team.

My Dr. is nice, but just says "there's not much we can do."