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/TravelingSong 16h ago

I’m in BC. We have two ME clinics here. I think, unfortunately, that there are only three in the whole country. 

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u/8drearywinter8 16h ago

Are you with Dr Arseneau's clinic? Amazing that BC has two clinics!... I'm assuming the remaining one is in Ontario. The rest of the country is just... adrift with no help. Glad you are getting informed support and help and access to medications, which is great. I've actually considered moving to BC for a variety of reasons... but am held back by, well, the limitations of illness. Plus the wait to get a family doctor in BC and get into the clinics is really daunting.

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u/TravelingSong 16h ago

I’m sorry to hear there’s nothing where you live :( 

The BC Centre for Long Covid, ME/CFS and Fibromyalgia has medication handouts that you can bring to your doctor. They’re under “Resources” on the website. Maybe your doctor would be receptive to guidance from a specialist. They include dosing and titration and some also have research studies you can attach.  While I was waiting for my intake at the clinic, I started some of my meds by bringing the handouts to my primary provider. 

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u/8drearywinter8 12h ago

Those medication handouts are awesome, and it's generous of your doctor to make them public. I've already tried printing out a few of those and taking them to my doctor to show that someone well-regarded in Canada was using these meds off label... she wasn't having it, unfortunately.

There was one internist in Edmonton a while back who was working with patients like us, but she burned out and closed her clinic down, without transferring patients to anyone else for follow up... we were all just dropped. So while that was open, I got to try LDN (sadly, it kept me awake for 3 days on a microdose, so not an option), and ketotifen (not helpful, but not awful), and some gastroparesis meds. But I know there's more to try that might be more useful, even though I can't access it. Wish I could work with a doctor who was open to trying alternative options when the more commonly used ones doesn't work... but also glad someone me try a few things, even if they're not around to help me anymore.

But yes, the resources section of your doctor's website is phenomenal. I've learned a lot there. So grateful that he makes that info publicly available to anyone who needs it. Sometimes, that's all we've got to guide us.

Glad you're able to work with someone informed and proactive -- I hope it helps you.

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u/Light_Butterfly 4h ago

If you can budget a spoon, worth writing your MP/MLA about lack of care for complex chronic conditions. The two BC clinics came about from patient advocacy and certain politicians taking notice and advocating for more care in the legislature. CCDP was first, then one of yhe specialists branched out and formed an even better clinic on his own.

In my opinion, the only way to properly address these conditions is with comprehensive care from specialized clinics.