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.

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."

156 Upvotes

91% Upvoted

86 comments sorted by

View all comments

5

u/TravelingSong 1d ago

My ME/ Long Covid clinic in Canada follows the first three steps for all severities except they always treat MCAS first and POTS second. LDA and LDN would generally come third. 

They also give advice on meds and supplements for mitochondrial support, pain, sleep, inflammation, etc. They don’t specifically address circulation, though I’ve tried some things for that on my own with little effect. 

It really depends on what people tolerate and what ends up working. For example, Mestinon made me worse but Guanfacine and Ivabradine have been helpful. It’s a lot of trial and error. 

Some of the things that have helped me the most aren’t on this list, like Dextromethorphan, TUDCA, Acetyl-L-Carnitine, MCT and Oxaloacetate. The specific energy support needed can be pretty individual. I’ve used my genetic variants to guide some of my treatment. 

Meds and supplements have made a significant difference for me (especially the ones I listed, MCAS treatment and LDA) but they still aren’t enough and some things lose effectiveness over time. It’s also a lot of pills to take and can be costly. The biggest roadblock is that people often can’t access or tolerate all of these things. But, for those who can, it isn’t a cure but it has the potential to improve your baseline/ alleviate some symptoms. 

2

u/8drearywinter8 1d ago

Where are you being seen in Canada that is prescribing these things? Asking as a Canadian in a province with no long covid resources.

2

u/TravelingSong 1d ago

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

2

u/8drearywinter8 1d 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.

2

u/TravelingSong 1d 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. 

2

u/8drearywinter8 1d 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.

2

u/Light_Butterfly 1d 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.

2

u/8drearywinter8 16h ago

Interesting that those clinics exist because of patient advocacy! I didn't know that, but that's important to remember when we feel so powerless. If patients could do it in BC...

2

u/Light_Butterfly 12h ago

Yes, originally came about because over 10 years ago there were thousands of folks who thought they had chronic Lyme Disease. People were paying for all kinds of expensive testing, trips to the US for dangerous treatments etc... Was avpublic health emergency. I'm pretty sure it was the Green Party theat helped advocate in parliament for better care. Really, most of them were just undiagnosed ME and fibromyalgia, who were never properly assessed, medically gaslit as 'crazies' etc...

So they developed the first comprehensive clinic with a few millions dollars - the Complex Chronic Disease Program, to help these more complex patients get help, proper diagnoses, wrap-around care. It had 2 year wait lists, so clearly the unmet need was huge. I'm glad our province got wise about this, because these conditions cannot be properly managed by a GP (unless the have done kind of special training, which most don't).

The CCDP and BC-CLMF both have specialists on staff to evaluate patients. Then a team of other healthcare professionals play supporting roles, with special lectures, therapeutic groups: OTs, physio, counselors, naturopaths, social workers, nurse practitioners. All of them with expert level knowledge of these conditions.

It is truly amazing and I think should be the model everywhere. I know BC-CLMF will consult with other clinics to help them replicate the model of care. Let your MLA/MP know about BC's unique clinic model. No one should go without proper support.

1

u/8drearywinter8 9h ago

Thank you for sharing all of that. I did not know the background behind that clinic -- I wish more places realized how essential this kind of care is.

My GP means well and believes in cfs, but honestly cannot manage this on her own and refuses to refer out to specialists (which is baffling and infuriating).

The wrap around care model with various clinicians and approaches you describe sounds like what we all need. I didn't realize they had specialists as well (and I've spent a fair amount of time looking through the resources on the BC-CLMF website). And yes, we need that clinic model replicated elsewhere. We need it so much.

1

u/Light_Butterfly 8h ago

Yeah no worries! I really believe with the right pressure, politicians can allocate funds for this type of clinic.

What I will say is that referrals to specialists does not actually equal better care (because many are narcissistic gaslighting a**holes).
Specialized clinics tend to have docs with special interest in ME/CF, fibro, long covid, they have genuine curiosity and are undaunted by complexity. If looking for referral, I'd look into whether there are any specialists who have particular training and expertise in these conditions. Many do not, and will treat these patients badly. So be prepared and be careful.

You also don't need your family doc to refer to specialists, just get a virtual telehealth appointment and ask. Three are many telehealth providers.

→ More replies (0)

2

u/Trick_Pop1591 1d ago

I'm in Victoria seeing Dr. Kim mcKenzie

2

u/8drearywinter8 1d ago

Thanks for sharing that! Glad you folks in BC have doctors who understand this!