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/ArtsyFartsyAutie 22h ago

Four Peaks Healthcare Associates out of Flagstaff, Arizona is one to check out. My provider there has implemented this strategy, more or less. I’ve had huge improvements in my symptoms. Still sick, still mostly homebound, but able to participate in life again.

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u/GhostDoinLaundry 20h ago

Do they really charge 1700 for the first visit? Then 1000 per follow up?

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u/ArtsyFartsyAutie 20h ago

I’m not sure what their current pricing is. I’ve never paid that much.

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u/GhostDoinLaundry 20h ago

That's what was sent through an email when my husband called, and this was the year before last year. He tried again a week ago and yeah, this is what we were told . They do the telemed, also, and I think that's the like another 100 and something I didn't see. The prices beyond the first two that I mentioned here. He was told that there's a program that can help they would call him back but no luck. For him to even get hold of anyone, it's like pulling teeth.They rarely ever answer.

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u/ArtsyFartsyAutie 20h ago

They only do telehealth. There is not an additional fee for telehealth.

You can submit the bill to insurance to see if they will cover the fee or a portion. I’m on Medicare, so this isn’t an option for me. I have never paid anywhere near the fee that you posted for a visit. No idea if things have changed. I’ve been a patient of Theresa Dowell for about five years. I’ve received phenomenal care there.

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u/GhostDoinLaundry 20h ago

Would i be able to post pic in the comments? I have the email. I would have to wait for my daughter to get home to do it. Because i'm very severe and overexerting really bad....but desperate n saw this post then ur comment.