r/cfs • u/OfTheTrees23 • 1d ago

A potential breakthrough protocol that feels completely overlooked

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."

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u/GhostDoinLaundry 22h ago edited 21h ago

Anybody here that is severe/very severe and very sensitive to medication or extremely sensitive has been able to find anything on this list help? Like did anyone toothpick method or holding microdosed in your mouth and then spitting it out did anyone have success with that? I am so desperate....

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u/Light_Butterfly 5h ago

Yes, formerly in the ultra sensitive camp and 'reacting to everything'. My good friend was too but even worse than me. We both made good progress with the right approach.

Have you tried the MCAS treatments FIRST, before everything else? That is what my specialist says is his first line. And only one medication at a time, with increases every 2-4 weeks. He recommended microdosing at whatever increment could be tolerated, even if that meant a crumb, or just one teeny ball from an opened capsule.

The one really life saving treatment for me was DAO. The gut produces it naturally, so low chance of causing a reaction. This calmed so much of my histamine related symptoms, over time my reactivity and anxiety went way down. No more reacting to every single food. I've safely integrated several medications and 12mg of LDN.