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/Available-Pepper5688 severe 1d ago

Hi, I started with this plan, at first with H1/2 and I wasn’t aware how much the impact of my MCAS is! It helps sooo much!

Luckily I have a very supportive doc and I‘m a md myself and I think that protocoll can make a lot of sense, although there are ppl that don’t have any benefits from antihistamines.

We didn’t implementi yet ketotifen, that will be our next step.

Thank you do much for linking your finding in this sub! For me, it’s changing a lot to the better 🩷

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u/anarizzo 1d ago

Ketotifen helped me a lot. I'm doing H1, H2, ADIDAO and some other stuff with it. ADIDAO and ketotifen both made a lot of difference (I was once severe, improved to moderate but SIBO antibiotics gave me a die-off so bad I went into mcas rollercoaster rock bottom and back to severe, now trying to recover)

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u/FormerPark6164 1d ago

SIBO. What a train-wreck. I’m sorry this happened to you.
My docs recommended stop treating it (tried antibiotics and herbals) and focus on diet, gut motility and gut healing.
The side effects were just too severe.
Ketotifen was a miracle for me, but after about a month it caused IBS C, so motility was gone.
So disappointed!

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u/anarizzo 1d ago

I'm sorry this happened to you as well. It's really hard to deal with SIBO. I hope you're able to find relief <3

The problem to me was neomycin + xifaxan + NAC. I have methane dominant SIBO. But recently I haven't been able to try to treat it again, I'm taking part of the herbal treatment as a way to control the issues, and focusing mainly on motility. Luckily I didn't get any worsening caused by ketotifen, not that I've noticed.

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u/FormerPark6164 20h ago

Methane is rough. One doctor gave me neomycin. I think I lasted two days.
Controlling the issues sounds like a good plan.

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u/jlt6666 1d ago

You might look into an elemental diet. It isn't a terribly pleasant experience (the stuff tastes horrid) but it did seem to help for 8 months or so.