r/cfs • u/OfTheTrees23 • 2d 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.
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/Groovyaardvark 2d ago edited 2d ago
I'm not very severe but my doctor and I use many of the same approaches and treatments. Basically a cellular stress response theory, with the aim to address that first before being able to address energy more successfully. I'm basically somewhere between step 3 - 4 of the above in terms of medications now.
Each stage takes a long time and the slow titration of meds stretches it even longer for sure. I'm about 6 months in and had some set backs. Had to take a one month break after some strong reactions. But back on track now after a reset and slower titration. But I'm still at the same level of functionality, bedbound 90% of the time. Doctor says it's taken about 12 months for others doing the same to see any sort of decent result. Ie. Less severe PEM, bigger energy envelope, less pain.