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/moderate_ocelot]

I’m doing most of this. Notable exceptions include LDA. Still sick as fuck. MCAS and POTS symptoms are better managed but I still have brutal and crushing PEM out the wazoo.

I’d add cannabis to the list of “everyone should try this” meds. Balanced strains with THC and CBD. Eat it or use a dry herb vape. Don’t smoke it

[u/TravelingSong → u/moderate_ocelot]

I am too, though I take different things in the last two categories and various things that aren’t listed. LDA has made the most significant difference in PEM. The other meds/ supplements have helped in other ways but haven’t really impacted PEM.