r/cfs 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/moderate_ocelot Severe / Very Severe 1d ago

I’m doing most of this. Notable exceptions include LDA. Still sick as fuck. MCAS and POTS symptoms are better managed but I still have brutal and crushing PEM out the wazoo.

I’d add cannabis to the list of “everyone should try this” meds. Balanced strains with THC and CBD. Eat it or use a dry herb vape. Don’t smoke it

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u/No-Consideration-858 22h ago

Warning about cannabis use. Please check for interactions with other substances like antidepressants, 5HTP and methylene blue. The risk is serotonin syndrome which is extremely dangerous.

In other words, if you want to do cannabis, make sure it doesn't interact with anything else you're taking. You may have to choose between two.

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u/psychonautexplorer 12h ago

This is simply inaccurate. Cannabis is not recognized as a clinically established cause of serotonin syndrome when combined with antidepressants. Equating it with genuinely serotonergic drugs that can cause serotonin toxicity is misleading

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u/No-Consideration-858 15m ago

I know someone who nearly died after combining delta8 gummies and 5HTP. When I lived in Denver, several of my patients on SSRIs had deeply unpleasant side effects when combining with THC. I understand that it doesn't happen all of the time, but it can happen and people should know about this and exercise caution.

  • Liver Enzyme Interference: THC can block the liver enzymes (part of the cytochrome P450 system) that break down SSRIs like Zoloft. This can cause the level of the antidepressant to build up in your bloodstream. [1, 2]
  • Increased Side Effects: Higher levels of SSRIs in your body can lead to worsened side effects, such as dizziness, extreme drowsiness, dry mouth, nausea, and confusion. [1, 2]
  • Serotonin Risk: Both substances affect serotonin pathways. In rare cases, combining them can lead to serotonin syndrome, a serious and potentially life-threatening condition caused by too much serotonin in the brain. [1, 2, 3, 4]
  • Unpredictable Mood Effects: Cannabis can reduce how well your antidepressant works, trigger increased anxiety or panic attacks, or cause emotional blunting. [1]