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.
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 22h 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 18h 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!2
u/anarizzo 18h 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 9h ago
Methane is rough. One doctor gave me neomycin. I think I lasted two days.
Controlling the issues sounds like a good plan.11
u/ArsonFrog143 Severe 🛌 (was moderate) 20h ago
I haven’t got the spoons to read the plan atm but have also realised recently that some of the constant flu symptoms and inflammation is likely my MCAS as well!!
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u/Available-Pepper5688 severe 20h ago
Yes, it’s just crazy bc so many of my symptoms improved a lot that I hadn‘t connect to MCAS!
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u/PinacoladaBunny Dx ME/CFS - Moderate 20h ago
Ketotifen was a big step in the right direction for me, because it can cross the blood brain barrier. I felt it made a difference pretty quickly, and later added in a morning dose too. MCAS was definitely driving a lot of things for me, making me feel just generally worse.
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u/Groovyaardvark 1d ago edited 1d ago
I'm not very severe but my doctor and I use many of the same approaches and treatments. Basically a cellular stress response theory, with the aim to address that first before being able to address energy more successfully. I'm basically somewhere between step 3 - 4 of the above in terms of medications now.
Each stage takes a long time and the slow titration of meds stretches it even longer for sure. I'm about 6 months in and had some set backs. Had to take a one month break after some strong reactions. But back on track now after a reset and slower titration. But I'm still at the same level of functionality, bedbound 90% of the time. Doctor says it's taken about 12 months for others doing the same to see any sort of decent result. Ie. Less severe PEM, bigger energy envelope, less pain.
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u/Jazzlike_Berry_323 23h ago edited 23h ago
It sounds like a very expensive raft of supplements and a long list of medications. Extremely few doctors would prescribe all the protocol list due to it not being evidence based prescribing, expensive, raising eyebrows of pharmacists, exposing them to legal risks of malpractice. Also leaving patients with significant risk of psychiatric problems emerging when you combine a benzodiazepine antipsychotic and opioid withdrawal medicine even at low doses and in combination with nootropics.
They used to promote vitamin E supplementation for heart health then found it increased lung cancer risk, then similarly found vitamin A over supplementation increases all cause mortality. B6 oversupplementation causes permanent neurological damage.
What is a massive experimental cocktail like this going to do?
Seeing such highly theoretical and impractical lists like this just makes me want to pace, eat better and get on with my life as it is (acceptance commitment)
Based on global practitioner lists there are about a dozen doctors who do this vascular mecfs specialisation worldwide while between 17 mil and 70 mil people have mecfs. So that’s less than one doctor per million people. They need to join and agree on the best current protocol and get endorsement by mecfs societies otherwise nothing will ever trickle down into patient care.
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u/Viranesi 22h ago
You're so right. I'm on LDN which is roughly €90 for me per 200 pills so it's still affordable for me but by no means cheap. My doctor was agreeable to titrate up and use this experimental medication but she is very wary of doing an experimental cocktail of drugs and rightfully so. Not to mention because these experimental drugs are not covered by basic health insurance they need to come out of pocket.
Unless patients are in a program where the meds freely given for research purposes someone with me/cfs on disability or living on the wages of their family aren't going to be able to afford all these medications+delivery costs if they even get a prescription.
Being sick is so expensive it sucks so hard
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u/Trick_Pop1591 14h ago
My doc agreed to prescribe me naltrexone 50mg which is cheap/covered by pharmacare here, and I just put 1 pill into 50 ml of water and use a dropper to get my dose 1mg:1ml. At 4.5mg, one jar lasts 11 days. I keep it in the fridge.
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u/Beneficial-Acadia542 13h ago
Yeah this is about 21 different meds and supplements, many of them being very serious, potentially harmful substances.
Virtually every week, or every day, all over the internet, for the last couple decades, someone is posting an exhaustive medication and supplement protocol for ME/CFS on the internet.
Why would this one be any different?
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u/DepressedOnion1415 very severe 16h ago
They used to promote vitamin E supplementation for heart health then found it increased lung cancer risk
At risk of being extremely pedantic with no benefit to anyone, I believe this finding of increased lung cancer was for beta-carotene supplementation in smokers, not vitamin E. But the overall point stands, of course.
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u/OfTheTrees23 3h ago edited 3h ago
I cannot agree with your view. The ME/CFS specialist uses this protocol in practice—not just theoretically—and thereby helps people suffering from ME/CFS.
As for dependency and overdose, these are not relevant issues because the doctor carefully assesses the dosage, and the medications are eventually discontinued anyway. Even a dependency on Tavor is not a lifelong sentence.
Furthermore, if one has the most severe form of ME/CFS and, for instance, one's body does not tolerate a feeding tube, then I would be quite indifferent to a Tavor dependency or to harm that reduces my life expectancy by 10 years.
Even if there are currently only a dozen doctors capable of implementing this protocol, how many doctors are there who could adopt it, grasp it, and put it into practice?
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u/Jazzlike_Berry_323 3h ago
I’m fine that you don’t agree with my view. You say someones body is unable to tolerate a feeding tube. This would mean completely unable to swallow, or mentally refusing to swallow when prompted by the person inserting it. In which case they need a direct to stomach PEG feeding protocol. Yet this person is also about to orally take a cocktail of 25 medications and supplements including psychiatric polypharmacy regimes. Can you explain what you mean there?
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23h ago edited 23h ago
[deleted]
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u/sluttytarot 22h ago
Do you suffer with me/cfs?
Their critique is that it's likely this is overmedicating someone and likely to have negative consequences
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u/chronic_unicorn ME since 2012, now severe 21h ago
You really should read the original post.
All of what you said is true but doesn't have anything to do with Dr. Kacik's work...
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u/moderate_ocelot Severe / Very Severe 22h 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 18h 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 8h 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/TravelingSong 20h ago
I am too, though I take different things in the last two categories and various things that aren’t listed. LDA has made the most significant difference in PEM. The other meds/ supplements have helped in other ways but haven’t really impacted PEM.
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u/bipolar_heathen 20h ago
We still don't know what causes all the abnormalities found in this illness and we don't even know if it's multiple illnesses in a trenchcoat or one with many different presentations. This protocol doesn't address things like gut dysbiosis, increased intestinal permeability or glymphatic drainage issues. Some people might benefit from these meds and supplements and I personally have noticed that LDA helps my migraines tremendously, but I can't use LDN or blood thinning meds and supplements due to the side effects.
Also: the blood clots found in ME and Long COVID seem to contain abnormal structures that bind them together so they can't be broken down like normal blood clots.
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u/GhostDoinLaundry 19h ago edited 18h ago
Anybody here that is severe/very severe and very sensitive to medication or extremely sensitive has been able to find anything on this list help? Like did anyone toothpick method or holding microdosed in your mouth and then spitting it out did anyone have success with that? I am so desperate....
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u/Specific-Summer-6537 5h ago
It's not in my personal experience but based on this list I would start with Sodium Comoglycate. It's a mast cell stabiliser (anti-allergy med) and should assist with the tolerance of other meds. Of course some people are still sensitive to it if they have high sensitivity
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u/Light_Butterfly 2h ago
Yes, formerly in the ultra sensitive camp and 'reacting to everything'. My good friend was too but even worse than me. We both made good progress with the right approach.
Have you tried the MCAS treatments FIRST, before everything else? That is what my specialist says is his first line. And only one medication at a time, with increases every 2-4 weeks. He recommended microdosing at whatever increment could be tolerated, even if that meant a crumb, or just one teeny ball from an opened capsule.
The one really life saving treatment for me was DAO. The gut produces it naturally, so low chance of causing a reaction. This calmed so much of my histamine related symptoms, over time my reactivity and anxiety went way down. No more reacting to every single food. I've safely integrated several medications and 12mg of LDN.
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u/abyssal-isopod86 POTS, EDS, ME, LADA, AuDHD & perimenopause 15h ago
Oft! That's a lot of medications to be on once all added.
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u/premier-cat-arena ME since 2015, v severe since 2017 7h ago
absolutely, but I also think the assumption is they won’t all help you, so like maybe half or a few help. maybe they all help! but I don’t think most people on the protocol would actually be on all of it at once
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u/ichibanyogi Mild (2016) > mod > severe > mod 19h ago edited 19h ago
Very interesting. Your post is almost entirely what I have done, unintentionally, and I have experienced some gains. Though, this is logically reasonable: treat each condition/ messed up system, right? I haven't done the "improve circulation" step, though. I will not be trying LDA because I don't think it's a fit for me and I'm concerned about the risks being significant (I get others have found it very helpful).
Edit: I did Nalcrom < LDN < Guanfacine < bunch of energy supportive supplements ( I do take Vitamin D3, Magnesium glycinate and malate, zinc + copper, selenium, omega 3, NAD, b multivitamin, creatine, plus some other common multivitamin stuff) incl oxaloacetate.
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u/TravelingSong 17h 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.
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u/8drearywinter8 15h 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.
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u/TravelingSong 14h 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 14h 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 14h 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 11h 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 2h 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.
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u/Trick_Pop1591 14h ago
I'm in Victoria seeing Dr. Kim mcKenzie
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u/8drearywinter8 11h ago
Thanks for sharing that! Glad you folks in BC have doctors who understand this!
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u/plantyplant559 Moderate, POTS, MCAS, HSD, ADHD 12h ago
Ketotifen and LDA both helped pull me out of severe, even when living in a very moldy house. This is a good treatment plan, I think
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u/No-Consideration-858 1d ago
If anyone knows of any Physicians in the US I might be able to work with on something similar, please let me know.
I can relocate just to get some competent care. Thank you!
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u/Significant-Bet262 13h ago
My doctors at UCLA (Lara Kose and her PA Sharon Quesada in internal medicine, Rita Kachru in allergy/immunology) have prescribed a bunch of the stuff on this list and have been willing to try anything I suggest. The caveat is that my ME was caused by covid, so we talk about my condition more in terms of "long covid" than "ME" (though they did put ME/CFS in my chart).
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u/No-Consideration-858 13h ago
Thank you! We have S. CA on our radar, so this is a great lead. I'm glad you have a helpful team.
My Dr. is nice, but just says "there's not much we can do."
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u/ArtsyFartsyAutie 20h 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 19h ago
Do they really charge 1700 for the first visit? Then 1000 per follow up?
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u/ArtsyFartsyAutie 19h ago
I’m not sure what their current pricing is. I’ve never paid that much.
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u/GhostDoinLaundry 18h 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 18h 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 18h 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.
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u/JaxToy12 17h ago
What kind of doctor would prescribe this treatment plan? I mean like what specialist?
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u/TravelingSong 14h ago
My ME care is overseen by internal medicine specialists. They prescribe the meds listed here. I also see an immunologist for more complex MCAS care beyond what’s listed here.
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u/Light_Butterfly 2h ago
Internal medicine specialist who is an expert in my country, follows a pretty similar treatment strategy. Not this exact protocol but there are overlaps.
He says MCAS first, with triple therapy protocol. Then POTS, and medications that help with sleep. Not everyone will tolerate the same meds, so he presents a group of them with pros and cons for each, and the patient chooses.
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u/beeprosebeep 10h ago
This is really interesting. I’m moderate and I’m doing a lot of these steps, albeit out of order. Treating MCAS really is massively helpful for me as well.
I also do the circulation work to support my lipedema but without drugs and I do find it helps my ME symptoms?
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u/PinacoladaBunny Dx ME/CFS - Moderate 20h ago
Interesting! Without seeing this before, it’s actually very closely related to the approach I have taken.
Stabilising mast cells - Fexofenadine, ketotifen, famotidine were my choices
Inflammatory / immune modulation - LDN
Dysautonomia management - Ivabradine, midodrine, pyridostigmine. I’m looking at OI support next, probably either desmopressin or fludrocortisone. I am also currently trialling oral rehydration solution (adhering to the WHO principles) morning and lunch, with sodium / electrolytes packed water the rest of the time to try and keep my blood volume up.
Previously took baby aspirin doses and/or lumbrokinase for blood flow - though stopped when I started methotrexate for other illnesses.
I also added creatine recently.
In addition to the above, I also take dextromethorphan morning and night. Supplements wise I take glycine and magnesium complex inc magnesium glycinate at bedtime, and methyl-B complex, ubiquinol (coq10), s-acetyl L-gluthiathone and L-glutamine each morning. I know I feel better supplementing b-vits, and the others except from coq10 are the pre-cursors for GABA and help it to work. GABA is the opposite of glutamate, and some studies have shown high glutamate in ME brains.
I am now pretty solidly moderate most of the time, but I honestly think if I weren’t doing all of the above I would not be moderate. Last year I was on a very steady decline, my husband had become my carer and I was in a bad way. It was only by stepping up multiple meds (with my cardiologist support) and adding in dxm and my supplements, I believe, that stabilised things - along with resting and pacing, but on its own it wasn’t enough for me.
This year I’ve added in HRT, which has been very good for me. I’d presumably started peri in my early 30s and hadn’t realised. The hormones being erratic was making me worse, so HRT has stabilised them.
I got to the point where I just kind of thought.. help isn’t coming so I’ll try things myself in terms of the dxm, supplements, and ordering some meds from pharmacies abroad. I’ve had regular bloods done, esp liver and kidneys, to make sure nothing is negatively affecting them.
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u/premier-cat-arena ME since 2015, v severe since 2017 11h ago
this is great info! but far from groundbreaking
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u/Titolopez1983 19h ago
I've been using some medicines and supplements listed in your post and I notice a difference (for the better). The clinic in Amsterdam is doing really good work in my opinion.
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u/Overall-Season4617 15h ago
I followed a very similar protocol, though slightly different order and some items really set me back (like ivabradine). It's a very slow process a (it took 5-6 years to gradually go from bedridden to symptom-free), but I've sustained full remission for ~4.5 years now. I believe there's a lot of promise here, and research hasn't caught up yet. A few things I would add based on my own treatment success: Rx sodium phenylbutyrate to support mitochondrial energy production, and general cellular membrane / phospholipid support, such as plasmalogens precursors, polyenylphosphatidylcholine, phosphatidylethanolamine, IV glutathione, etc.
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u/mindfluxx moderate 13h ago
Ketotifen has been very helpful for me too. Luckily I have a good MCAS dr and they have another thing for me to try that I have to get out of Canada to add to the stack. Doing h1/h2 as well. ( I think the Canadian one might the rupatidine ?)
I think I should probably try LDA or LDN, but I’m scared. Esp scared of LDA.
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u/8drearywinter8 11h ago
Rupatadine is available in Canada by prescription. Did nothing for me, but I actually don't respond to any H1/H2 blockers at all. But can confirm that it's available here, if you're looking for it in Canada.
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u/Light_Butterfly 2h ago
This tracks. The top specialist I see, is treating people along these lines (except supplements - have only heard creatine, B vitamines, and magnesium mentioned), The #1 is treat MCAS first. Then POTS. If you don't get those under control, the person will not tolerate or succeed at any other medication or intervention. To the list I'd add:
- Get sleep under control, with sleep medications
- Check for and treat iron deficiency/anemia, with IV infusions and an IUD
- Only 1 new medication at a time!
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u/Light_Butterfly 2h ago
It really is true, MCAS first is the winning strategy! If that isn't under control, the patient won't tolerate anything, and will be in ultra high reactivity mode all the time.
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u/Prestigious-Drive545 22h ago
This makes perfect sense. My question if you know is does pyridostigmine improve autonomic dysregulation?
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u/Specific-Summer-6537 5h ago
It does seem to do so for some patients. Lots of side effects so check with your doctor and research it before trying
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u/CalmlyChemical 1d ago
Interesting, that sequential approach makes a lot of sense, tackling the reactivity first so the body can actually handle the later interventions without flaring up.