Long COVID ME/CFS patient recovers to 80-90% using high-dose melatonin at 3 x 5 mg daily, taken morning, afternoon and night

[Hip]

i am still unclear on one thing: are the higher doses necessary or can the same be achieved with smaller doses? (but i guess the answer is "it depends")

I guess if one were going to try this protocol, you could start off with lower doses. That way, the drowsiness or sleepiness that melatonin might cause during the day may be less.

The LC ME/CFS patient on Reddit who did this protocol said he felt sleepy for the first three days, but he drank coffee try to counter the sleepiness, which he said helped. So I am guessing from that statement than after 3 days, he started to habituate to daytime melatonin, and the sleepiness abated.

And after a few days, he found his ME/CFS started improving.


I am thinking of trying this protocol soon. I will probably start with one daytime melatonin dose taken in the afternoon, and continue with my regular doses taken before bed. Then later add a second daytime dose in the morning.

 

[Wishful]

Wow that is interesting too because those veggies to me are crucial, I wouldn't go a week without them and cumin/turmeric make me worse

Just another example of how different we all are. I gave up brassicas long ago because they made my ME worse. Cumin was wonderful for me. We agree on turmeric though: makes me feel worse.

 

[Hip]

I've just been chatting to this recovered ME/CFS patient, and found out more details, which are important:

It seems that his long COVID ME/CFS was unusual, in that he was constantly catching colds every 2 or 3 weeks, which hit him very hard, and caused him to become bedbound with illness for a week or so. And just when he started recovering from one cold, and getting out of bed, another would hit.

He thinks these constant colds were setting him back all the time. But the very high-dose melatonin transformed his colds from being severe protracted bedbound situations, into being so mild and short-lived that they are barely noticeable.

Thus he thinks melatonin put his ME/CFS into remission by preventing these constant severe colds which were always setting back his ME/CFS.

So this melatonin treatment might be good for the sort of ME/CFS patients who are always catching colds, and who find these colds hit them very hard, and cause lingering ill effects which constantly set back their ME/CFS.

According to a poll, most ME/CFS patients are the type who have ramped up immunity, so that they rarely catch colds (Rich Van Konynenburg had a theory of why this subtype of ME/CFS is immune to colds). But the poll indicates that 15% of patients are the opposite, the type that has weakened immunity that makes them catch colds all the time, and with each cold hitting them extremely hard, with it taking them weeks or months to get back to baseline.

It is for this latter subtype that this melatonin protocol might work.

I have updated the first post of this thread with this new information.




As an aside: for all us regular ME/CFS patients who are afraid of becoming permanently worse as a result of catching COVID, and developing long COVID on top of existing ME/CFS (such worsening has occurred to lots of ME/CFS patients), then this very high-dose melatonin protocol, taken in doses as high as 30-60 mg daily when a new viral infection hits, might be a way of rapidly curtailing the acute COVID infection so that it does not trigger long COVID.

Maybe if even healthy people took this very high-dose melatonin when they catch COVID, it would greatly lower their risk of getting long COVID.

 

[hapl808]

I always thought I was getting sick all the time in my first 10-15 years of symptoms, but in retrospect I wonder if that was PEM. I'm not sure how one could distinguish when my PEM symptoms were often: sore throat, cough, myalgia, exhaustion, GI disturbance, congestion, etc.

Now I still get those symptoms, but with close to zero human contact I'm pretty sure it's not a 'cold'.

 

[Dysfunkion]

I always thought I was getting sick all the time in my first 10-15 years of symptoms, but in retrospect I wonder if that was PEM. I'm not sure how one could distinguish when my PEM symptoms were often: sore throat, cough, myalgia, exhaustion, GI disturbance, congestion, etc.

Now I still get those symptoms, but with close to zero human contact I'm pretty sure it's not a 'cold'.

Those are my primary ones too with a feeling of my middle back of my head being inflamed, sometimes around the eyes/forehead, and my tailbone area will also feel inflamed. Feels like my brain/head essentially becomes a sickly paperweight that can't connect to itself properly. My digestive system will also get bloated and backed up. A normal cold would feel great in comparison actually but this feels like my immune system can't rev itself up enough to turn this into a normal cold so this is the result.

 

[hapl808]

Feels like my brain/head essentially becomes a sickly paperweight that can't connect to itself properly. My digestive system will also get bloated and backed up. A normal cold would feel great in comparison actually but this feels like my immune system can't rev itself up enough to turn this into a normal cold so this is the result.

Same. And I almost forgot that I'd feel feverish, but once I actually bought a thermometer and checked - I found that my temperature usually dropped slightly during those time periods (yet all my thyroid levels were fine).

As I said, I frequently still get symptoms of an acute cold - feverish, cough, sore throat, congestion, and so forth - but I suppose it's either PEM or some latent virus/bacteria/fungus since my human contact is minimal.

 

[datadragon]

i am still unclear on one thing: are the higher doses necessary or can the same be achieved with smaller doses? (but i guess the answer is "it depends")

I guess if one were going to try this protocol, you could start off with lower doses. That way, the drowsiness or sleepiness that melatonin might cause during the day may be less.

A higher dose will inhibit inflammation so it can work temporarily when in that state, but when not in that high inflamamtory state such as not having a higher c-reactive protein or other markers of inflammation, it was recommended to stick to the very low dose for sleep uses which was found to work better in this link. Higher dosage elevated plasma melatonin levels during the day, which can cause a "hangover" effect in some of the subjects and of course would be very anti inflammatory which is more beneficial when high only rather than always. https://news.mit.edu/2001/melatonin-1017

I am thinking of trying this protocol soon. I will probably start with one daytime melatonin dose taken in the afternoon, and continue with my regular doses taken before bed. Then later add a second daytime dose in the morning.

Consider the solgar chelated zinc (or similar) additionally as an additive to restore zinc metabolism leading to some of the downstream effects. This too was also going to be helped by the melatonin by lowering NLRP3 activation and INF-y. That leads otherwise normally to the higher WASF3 levels and exercise intolerance/PEM.

The level of WASF3 was inversely correlated with that of MTCO1, the last enzyme in the mitochondrial electron transport chain, which drives oxidative phosphorylation. This disruption leads to reduced mitochondrial oxygen consumption, providing a molecular explanation for symptoms like exercise intolerance and post-exertional malaise in patients with chronic fatigue. The team then showed that extra WASF3 in the cells interfered with formation of the structures that mitochondria use to produce energy.
https://medicalxpress.com/news/2023-08-chronic-fatigue-mechanisms-source-wasf3.html
https://forums.phoenixrising.me/thr...s-chronic-fatigue-syndrome.90582/post-2469256

 

[Dysfunkion]

Same. And I almost forgot that I'd feel feverish, but once I actually bought a thermometer and checked - I found that my temperature usually dropped slightly during those time periods (yet all my thyroid levels were fine).

As I said, I frequently still get symptoms of an acute cold - feverish, cough, sore throat, congestion, and so forth - but I suppose it's either PEM or some latent virus/bacteria/fungus since my human contact is minimal.

I interact with a lot of people all the time and I'm around them a lot too but it doesn't seem to matter whether I'm having more or less contact that week. I'm pretty sure in my case the PEM is caused by the reactivation of my body's endless collection of pathogens due to my immune system not doing it's job. It's probably that the infections in my case have taken shelter in nerve endings and when those are activated so are the infections.

 

[bad1080]

I interact with a lot of people all the time and I'm around them a lot too but it doesn't seem to matter whether I'm having more or less contact that week. I'm pretty sure in my case the PEM is caused by the reactivation of my body's endless collection of pathogens due to my immune system not doing it's job. It's probably that the infections in my case have taken shelter in nerve endings and when those are activated so are the infections.

i am guessing the threshold (of viral presence) for an infection is much lower in PwME too, what makes us sick would probably not even register for a healthy person

 

[fiesta]

hello members.

I,m a normal/regular me/cfs patient, not a typical!

Long time ago i did a similar test myself, it did take it about 4 days (15/20 mg daily spread during daytime), i experienced a suddenly big improvement for one night/day afterwards.
Because it took so much from me during daytime prior to achieve this effect, i did stop it afterwards.

I did experiment it because i did read that melatonin is a strong antioxidant, but i do no know of course what it did do for me.

The experiment was succesfull, but due to side effects, i did stop it.

greetings
Europe

 

[Dysfunkion]

i am guessing the threshold (of viral presence) for an infection is much lower in PwME too, what makes us sick would probably not even register for a healthy person

I've noticed this years ago from my environmental sensitivities which were the first things to get out of hand, I remember the day it got permanently worse in that department too. I was working my job at a gas station heavily interacting with large amounts of people, touching tons of dirty change, handling tons of cleaning chemicals, doing the trash daily, huge EMF radiation exposure daily, and constantly drinking the coffee there from the machines cleaned daily with those harsh chemicals. My hours were also all over the place so I couldn't have a solid schedule. One day my brain, immune system, and body just broke at the same time. Felt like someone poured acid all over my head, I developed the most severe cognitive dysfunction of my life, and the sensitivities to everything under the sun began. It never left and largely got worse till it turned into this nightmare after I crashed from saw palmetto which was the final nail in the brain fatigue coffin.

 

[Blazer95]

Hip, I really appreciate your work here.

Cheers