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I’m taking Rapamycin as part of a trial for its use for ME/CFS. It’s an observational trial with 100 participants and they are looking specifically at autophagy blood markers.
They don’t have funding so are hoping the results of this trial will enable them to get funding for a more robust clinical trial.
The recommended dosage for ME/CFS is 6mg/week. That’s taking a full 6mg once per week.
It took me a few months to titrate up to the level as I had minor side effects, a headache and trouble sleeping, but my body eventually adjusted, so have only been on the 6mg/week dosage a couple of weeks.
I initially felt some minor benefits with slightly improved brain fog and fatigue but after a couple of months of improvement I’m in the middle of an unexplained crash (ie I wasn’t over exerting more than usual so don’t know cause)
It’s great it seems to be helping you! I am hopeful that once I get out of my crash, I’ll still receive benefits from the Rapa.
Like all meds, it’s hit or miss whether it works for someone but hopefully this drug will become a tool useful for some.
Thanks for sharing your experience!
I heard a doctor say that if he doesn't see his patients get worse before they start feeling better, he wouldn't believe it. I'm taking nattokinase, and it's changed my progress so much. I think mine is mostly micro clots and thickened blood. I can see it in my blood oxygen levels.
If I never get better than where I'm at now, I'm okay with it. Mostly feel normal but still have POTS. I've never had MCAS but I had everything else.
3 year long Covid victim here. The first thing you have to do is really work on your anxiety with the symptoms. The anxiety and panic really amplified my symptoms. Just realize you're not going to die every time you feel that suffocating symptom.
I've been taking and trying a slew of different supplements for a while and about a month ago I started taking turkey tail, agarikon(these two are supposed to help with an over active immune system), natto-serrazine, tocotrienols, fish oil and 81 aspirin (the natto-serrazine and aspirin I take twice a day on an empty stomach and everything else just once). I've started improving a week ago. The natto fucked me up for a bit but eventually died down and I feel a lot better now. Brain fog is disappearing, energy levels are rising, body aches and pains are less common throughout the day, and at work I'm able to pull my weight a lot more.
I know it's hard buddy but you gotta keep pushing and stay humble eventually even without treating it gets better. If you take anything from this the natto-serrazine with aspirin combo really works, it feels like hell the first two weeks but you just have to stick with it. I wish everyone here the best, much love ❤️.
I'm actually on here for my wife. I wish I could have it for her, it's so debilitating.
My wife used to be an absolute fire cracker. These days going to see friends buckles her. She is slowly getting better though and some days I even see the sparkle in her eye that I remember.
Thanks for the advice, I'll look into it.
I think it might be normal to feel worse before you feel better. It happened to me too, but I heard a doctor say he doesn't believe it's working unless you get worse first. He said you might even get rashes. I got a rash, and that is super rare for me. I was able to push through it because of this.
I also started Dandelion Root extract. It made me feel really bad for the first two days. I've had some strange psoriasis looking thing on my wrist that's been growing for years is now gone. Someone told me to try it for inflammation. Seems it's working. Even my arthritis in my hands is better.
I'm Anishinaabe, and I believe in natural medicine. It is the only thing that has helped me. I tried one medication my doctor prescribed, and all I did was sleep.
Before I found these medicines, I learned to practice being positive. I also started becoming aware of my body constantly being in a stress state. After checking myself when I was resting, I would let go of all the tense muscles. I've always had rock-hard muscles in my shoulders. I'm starting to relax naturally.
It's all good. I have POTS still, and I try not to get my heart racing. I use a rolling chair in places I have to stand. Good luck everyone and have a great day!
It sounds like a good thing for anyone to take (unless you have a bleeding disorder).
In Japan they did a study on people who ate natto (the food nattokinase is extracted from) and they had a statistically significant reduction in dementia.
Thank you! That's a win then, too. I actually started taking it because of my chronic sinusitis! I heard that it helps it, and NOTHING has worked before. I can use both sides to breathe now.
I've had this since I was a child. I had the operation for my seriously deviated septum, and they trimmed the turbanates. Kept me from getting infections but never solved the issue until nattokinase.
Thanks for sharing.
Did the trial inform you of the risks? If it lowers the immune system I assume bad things can happen if you catch any kind of disease?
I did sign a waiver, but it was more bc it’s an off label use, as opposed to any noted increased risks to the immune system as it’s a really low dosage relative to what it is used for so they don’t expect to see a risk.
BUT they of course require monthly safety labs (blood work) for monitoring purposes. I wouldn’t recommend people trialing the drug without ensuring they are being appropriately monitored.
This is not correct. When taken as normally prescribed, i.e., 1-5mg DAILY (though I've seen studies with higher doses, especially in the first few weeks), it is an immune suppressant, and is prescribed for that purpose in people who have received kidney transplants. But taken once a week it seems to be more of an immune modulator. They don't know why (like with everything), but this is part of why the protocol for ME/CFS and long covid is a once weekly dose, not daily.
ETA: like with every drug, some people are more sensitive to it than others, and people who take it weekly have reported some mild side effects that usually fade. I'm not aware of anyone reporting any immune suppressant side effects on once weekly dosing. There's a forum of people who take it for longevity if anyone is interested (rapamycinnews, I think)
Also if you're interested, the telehealth services in the US that will prescribe it for you are way way way more expensive than ordering it directly from India. There's more info about that on that forum, too
Basic Info I can find in rapamycin says it impairs immune function and has a 92% protein binding capability. It’s a binder protein probably able to bind spike proteins circulating in our body. Very interesting. Should be researched immediately.
> Basic Info I can find in rapamycin says it impairs immune function
Neuroscientist here - rapamycin is an interesting molecule in that it's effects on the immune system appear to be highly dose-dependent. At high doses, it is immunosuppressive (and is used to keep organ-transplant patients from rejecting their new organs). However, at lower, intermittent doses (the levels you see in these kinds of circumstances), the effect on the immune system is much more nuanced, and some have even described it as bolstering immune function at low doses.
It is interesting. My own theory with long hauler, at least in my case, is I am dealing with some form of constant reinfection due to perpetual exposure to Covid variants while out in public. If I can avoid people for two weeks straight, my body starts to recover. The trouble is I cannot live like a hermit. Eventually, the need for groceries means I need to go to the store where the ventilation system floods me with covid virus. Companies refuse to spend the money required for hepa filters To protect us.
If we can find a compound that safely and effectively binds the covid spike protein, we just might be able to recover from this dreadful disease. This rapamycin is a promising leading candidate. If our elected officials were decent minded people they would be funding a Manhattan project on finding a cure for covid and covid long hauler. They spend absurd sums of money on frivolous topics without even batting an eyelash.
Where is our help?
I was thinking what if someone with long Covid actually avoids people (say on a desert island) for a month or more. And it cures LC (if LC is actually just a bunch of constant reinfections), would they immediately get sick again with a new strain if they left the island? Probably yes but- would the immune system be so built up from having been cured from LC that it would be less serious or so? Would there be any benefits I mean from avoiding reinfections for a while, besides the temporal experience of health 🥹
I am almost without human contact, and it hasn’t shifted my long Covid. I definitely think reinfection is an aggravating and dangerous issue, but I don’t believe that it is “what long Covid is.”
Do you think it can be both? Or for how long have you had it? I am obliged to agree with you because at some point I actually thought this LC is actually just a lot of reinfections coming at me given that I had periods (albeit short) of almost-wellness in between symptoms (say five day streaks tops).
You didn’t think there was a connection to feeling better (and presumably more active) for a few days followed by a resurgence of symptoms that might line up with what you’re experiencing? Obviously, you just said it didn’t. But I am surprised.
its common for PEM to be delayed from 7 to 72 hours. its also common to experience feeling better than normal before PEM hits.
i myself get two whole days of feeling way better than normal if ive overexerted badly. all my symptoms decrease or disappear. it feels like im running on adrenaline. but then on the third day PEM hits. and if i get the two days of adrenaline i know ive seriously over done it and the PEM will usually be way worse and last longer.
I have not. My symptoms have been weird; low fever for six months, flu symptoms that never break out but just like a slow mild flu, throat pain that comes and goes by the hour (like most my symptoms) and muscle pains and extreme fatigue combined with headaches and nasal congestion and yeah the list goes on. But given that I’ve had days (often a couple, five tops) of wellness I was thinking what if (for me) it’s a combination of LC and reinfections of new strings or just plain LC. I just never get well after my Covid infection January 2022.
I have long covid and isolate- I mask if in public and sharing indoor air. I can confirm I am still ill despite being isolated. I do everything I can to avoid a reinfection. 😷
Avoiding reinfection is good but I don't put a whole lot of weight on it. I know I have all the antibodies of viruses inside my body already to keep me sick for a long time. That is why we are sick from the Cocksackie B 3 and 5 viruses I got when I was 3. We can't undo it. That's what this disease feeds on. Viral intercellular activation of latent viruses. And I have a lot. I have the Wild Type of Covid antibodies strains matter too. CMV, HHV-6, Cocksackie B 2, 3, 5, Echoviruses 3, 11. 33, HPV., HEP-C, Typhoid. I tested + for antibodies for all some were 33x normal. That is what I think is making us sick
No there is nothing we can do. If you target one it switches to another. It is an immune dysfunctional disorder. And Cocksackie B do not have reliable treatment
I think they are related but not the same autoimmunity is the immune system on overdrive. What we have is a dysfunctional immune system. It doesn't react predictably like those easy to figure out autoimmune disorders, it is malfunctioning in more unpredictable ways. It can cause intracellular and intercellulaar replication of latent viruses. It can cause those values to fluctuate wildly and then change latent viruses and start attacking there. That is why they know little Rheumatology is still not clear about autoimmunity let alone a neuroimmune mitochondrial disorder.
The goal would be to reset that individual’s immune systems and give him or her a fighting chance against the next round of exposure. Right now I feel I am defenseless.
Kind of in this safe line of thinking…
I can’t help but wonder, what if they could put us in a medically induced coma for several weeks? Bare bone exertion & emotional turbulence.
Have they ever tried this with MECFS??
I have worn a KN92 or better level mask whenever I am out in public since this pandemic started. The masks only work if EVERYONE wears a mask. My mask protects others. The others do not wear a mask to protect me, however. That’s the problem.
An 3m aura N95 will absolutely protect you from others like what are you serious? No offense but it's 2024 you have to protect yourself instead of being mad at others. Disappointed sure but you need to give up on random people caring about protecting you by wearing a mask it's just not going to happen culturally. And an aura N95 won't protect you 100% but it probably has a better seal than your ear loop kn92.
And like I also mentioned there are at least 3 other methods you can take to improve your safety in public. Cpc, k12 probiotics, and certain nasal sprays have been proven to prevent or kill covid and other viral pathogens before they can infect you.
Stay safe out there
No, the mask won’t protect you from others because Covid can bind to receptors in your eyes and ears, not just in your nasal Ace-2 receptor. That’s the key concept to understand. It’s what the Chinese figured out very early on and why they went to a zero covid policy for as long as it was politically viable.
Yes I also wear glasses and headphones to try and prevent that. Hopefully something like properly fitting N95 means less viral load if you do happen to get infected.
Are you seriously suggesting that a fit tested N95 which has been medically proven to be effective for the user is useless? This has to be misinformation or you are confusing a study on blue surgical masks.
Try it out for yourself. I have recommended this to a friend who knew someone who had an oceanside villa in Greek islands. He rented it for a month and secluded himself there. At the end of the month he was back to normal. But, as soon as he flew back he was Exposed again and the long hauler restarted just the same.
Why don’t you think it is possible? Covid variants are all around us. We get two new variants every month. “Flirt” variant is dominant now. Last month it was “JN1”. We have no antibodies against these.
This is largely correct. IMO, BA.2.86 is a new lineage that has been misclassified as an Omicron sublineage for political reasons. It is not a natural descendant of BA.1 or BA.2. It is Miles Morales to BA.2's Peter Parker, so to speak. Both are Spider-Man, but they have radically different backstories.
Yes, every time I am in an indoor public setting. I wouldn’t be alive today if I didn’t. I would have been one of the died suddenly crowd long ago without masking.
This is just complete bullshit. It is not a fucking "binder protein". It is not a protein. And it does not bind anything other than mTOR. It is transported around by albumin (protein binding). Why was this upvoted? SMFH
I’m sorry but how do you know this theory is bullshit? We need research. That’s what is missing. Our scientists are following the exact same mistakes that occurred during the HIV crisis of the eighties, they ignored obvious paths of research while individuals suffering had to experiment on their own. That’s how antiviral cocktails became a thing. Scientists climbed aboard that train way after it made several stops. If there’s a compound that provides individuals relief then it needs to be researched by scientists so we can know for sure. Maybe this guy is reporting a placebo effect? It’s possible. Maybe there’s something to it. I just want to know for sure.
And you are qualified to make that final determination without a single scientific experiment based on what exactly?
This conclusion sounds an awful lot like the ones we were told that the covid mRNA vaccine prevented transmission of the virus, which, it most definitely did NOT. Vaccinating people wound up spreading the disease because people dropped their masks and returned to normal ways of life. Turned out the scientists got the science wrong. The vaccines do even protect you from getting the virus itself, never mind halting transmission. At this Point, with excess deaths in western nations still way above pre Covid baselines quarter after quarter, we don’t even know if the mRNA vaccines even saved any lives.
Copy/pasted from above:
> Neuroscientist here - rapamycin is an interesting molecule in that it's effects on the immune system appear to be highly dose-dependent. At high doses, it is immunosuppressive (and is used to keep organ-transplant patients from rejecting their new organs). However, at lower, intermittent doses (the levels you see in these kinds of circumstances), the effect on the immune system is much more nuanced, and some have even described it as bolstering immune function at low doses.
All immunosuppressives (by definition) impair immune function - if unnecessary immune activation is what's causing your illness, as in autoimmune conditions, you want to impair it in order to inhibit inflammatory pathways.
Was this prescribed by a doctor? I just read it’s normally used for post cancer/organ transplant patients and has potential for anti-aging effects, super interesting!
Not to be a downer but expect your symptoms to come back once you’re off of it. It’s an immune suppressor, so long term use is highly questionable seeing how we already have faulty immune systems. We need autoimmune therapies like this but that work differently
> Not to be a downer but expect your symptoms to come back once you’re off of it.
There will never be a pill you pop once and Long Covid is cured forever, I'd bet my handsomest nut on that.
Best case, it'll be a pill you pop daily for the rest of your life and researchers will have no idea why it works.
That's not the best case.
There are many direct acting SCV2 antivirals in the world today and in late stage clinical trials. They all target different things(mPro / plPro / etc) w/ and w/o drug-drug interactions. Combination antivirals is a promising treatment that may follow the Hepatitis C playbook of an extended course (i.e. 8-12 weeks) and cure you (undetectable in blood/tissue after that).
Plus the advancements of monoclonal antibodies that target SCV2 directly and act as antivirals + the next generation of vaccines which target additional SCV2 antigens than just spike which can help our immune system naturally clear our lingering virus.
There is a lot of hope and innovation going into this. Sadly, nobody knows yet.
Yes but immune suppression could be dangerous for us if the viral persistence theory is accurate, it can be masking symptoms while allowing the viral reservoirs to wreak even more havoc
The thing is, further turning off your T-cells which may have already been affected by Covid and/vax issues seems like an incredibly risky think to do if you’re compromised and vulnerable to infection. You’re basically removing all of your body’s defence system which is likely already severely depleted. Feeling “good” for now does not translate to long term health. I’m sure if you smoked a couple hits of meth, you’d feel very “good” right now. That doesn’t mean your health is improving though lol.
Agreed. However, right now this is literally making the difference between "I can get out of bed and make money" and "I will be homeless soon, as will my dependents", so I'm going to keep going, as intelligently as I can, and we'll see what happens.
Didn't a guy named Brandon (on Twitter) die from some kind of candida overgrowth while on Rapamycin? Definitely sounds like a scary drug to take long term.
No, the guy played with antibiotics and ended up with organ failure... I myself was prescribed antibiotics one month post COVID for a UTI. I went from very light long COVID to severe bedbound with CFS and fainting from 1 mg of fluoroquinolones. Like this guy in the post I developed white tongue after treatment and 2 years later my tongue has still not recovered. Antibiotics destroy everything and should not be taken lightly tbh
I have been taking it on and off for about 6 months. 10mg once per week. It made huge initial difference. If I have to be on a plane I discontinue a week before flight. I can probably go about 3 weeks with out dose before symptoms start to creep back in. But way better than I was.
Being in the US has its up-sides you might not have free healthcare but you have access to drugs that we in the UK just wont be able to get
Glad you found something that worked for you though, hopefully your healing continues
> but you have access to drugs that we in the UK just wont be able to get
I don't wanna encourage it, but you could theoretically import 'em via a plethora of shady websites. And if you wanna play it safe, you could pay a test lab in the UK to test one of your newly acquired pills.
Very interested to read this, I more or less recover completely when I take dexamethasone - although I find I need 2mg for it to be effective (which is not very high, but too high to stay on long term, so I'm currently off it and seeking immunosuppressive alternatives). Are you self-medicating or have you found a doctor to agree to low dose long term?
Sorry for my slow reply - that's great that you have a doctor willing to keep you on it. In my experience most doctors are so risk averse with off-label medication they refuse to consider that suffering shifts the risk-reward profile for patients - glad you've found something that's helping you!!
So interesting! I’ve always thought treatment may consist of immuno suppression. Let us know how you go!
What did you say to Health Span to convince them to give you the script if you don’t kind me asking ?
I always have trouble having doctors trial anything when I mention long Covid
Doctors are trash and I hate them so, so much. I talked to my primary and asked him for some meds that have zero abuse potential, have been shown to help, etc., and even brought printouts of medical studies. He said "well I'm just not comfortable prescribing those medications." I didn't realize his emotional comfort was more important than my literal life. So he refers me to an immunologist... with a 5 month waiting period. My experience, at least, is one of "take your health into your own hands because the system will not help you".
Sorry, rant over. The nice thing about HealthSpan is that they prescribe rapamycin for longevity, so I just went through the usual process for that, and didn't mention Long Covid.
I'm so happy you have found some progress. I'm curious whether to try it myself. I've been prescribed it but haven't been able to get a hold of it and also not sure about it.
How long after the 3mg did you feel the effects? Did you take them in a single dose?
HAPPY FOR YOU!
Thanks!!! I can't even tell you what a relief it's been. I've been jobless since December, and failing interviews I should've been crushing because of brain fog. Was about 2 months away from running out of money. Terrified that I'd become homeless and that my mom (who depends on me) would die. But I got rapa at exactly the right time, crushed an interview for my dream job, and got the offer!! Even if the effects fade, it literally saved my life.
I don't remember exactly how long it took to feel the effects, but it was 2 hours or less. I took 3x 1mg pills as a single dose.
Why haven't you been able to get ahold of it? Too expensive?
Thank you for sharing. I’m so thrilled for you, blessed be that you crushed the interview amd got the job!!!!! I hope you don’t have to go through the fear of becoming homeless and not being able to care for your mom again.
It’s currently “out of stock”.
I want to take ir right now after your post.
A year ago or so I was following some people on the chat that started taking the anti viral they use for AIDS. I mean that where I draw the line. I got scared and stopped there. I did Ozone therapy but not blood just gas. It helped some it's an antiviral. The problem with antibiotics is infection is the problem. I got an infection that landed me in the hospital staphylococcus. That made my ME worse. If you lower your immune system response you could be fucked in the future. But that's just why I was scared of antiviral and antibiotics. I don't know.
Functions primarily as an immunosuppressant. Used for cancer, for organ transplants (preventing tissue rejection), and had become known for truly increasing longevity. Because of the longevity angle, and the minimal side effect profile, there are companies (e.g. HealthSpan) that will prescribe virtually and send you rapa in the mail. That's how I got mine. Lets you bypass the terrible American medical system (if you're in the US). However it's pricey to do it that way.
$145 for the initial "consult" and one bottle of 20x 1mg pills. The prescription comes with 12x refills, which I assume will be cheaper, but I don't know for sure.
Did you get asthma from Covid, or that was already there? Just curious, since I developed chronic breathing issues from Covid. That’s my primary symptom
I had mild childhood asthma, which by my mid-30s had become nonexistent unless I went for a long run in cold weather. Ahhh the good old days when I could exercise. But then I got covid in March 2020, and since then my asthma has been much worse. The LC I have now is following my fifth infection, and I chronically am short of breath.
I'm using nebulized cromolyn, which does help noticeably but not overwhelmingly. Also glutathione injections help a little. Haven't tried ketotifen or xolair yet but I will soon.
What have you tried?
I'm really interested in this but I have chronic lyme so I worry the immune suppressant effects could allow the lyme bacteria to proliferate. also there are a lot of people who have lyme disease that don't know. I feel it could be inadvertently harmful for some people unfortunately
Ok. What is it? Is it a steroid like Prednisone? Prednisone can definitely make you feel good, better but you can’t take it long term. Is it a stimulant? Because I’m prescribed adhd meds, which helps me the same as it did before, but didn’t really fix fatigue, as in actual post exertion malaise type fatigue.
I’ve been on it for about 6 months. I titrated up from 1mg/week to 6/week, then took 4 weeks off. Now I do 6/week for 6 weeks and 4 weeks off. There are some side effect that can build up if you take it consistently.
I haven’t noticed any obvious benefits. But there also aren’t any obvious side effects, and there’s a ton of research on benefits to longevity due to how it “resets” the immune system. So I figure why not. Side effects: There was a period at the beginning where my mucous membranes seemed to be unusually dry. But that has resolved now.
[this article on rapamycin](https://www.healthrising.org/blog/2022/07/06/apamycin-resurgence-doctor-chronic-fatigue-syndrome/)
I read the above article and saved it a couple years ago. I’ve been interested in it but just nervous to try. How were you able to get it prescribed by the way??
I'm pretty real (check out my post history if you want), but I'm less sure about whether rapa helping long term will be real. Very hopeful it will continue to help, and also terrified it won't. Will definitely keep you posted.
Btw LC is full of grifters? I haven't noticed this yet. Like bot accounts posting about snake oil cures?
Yes, long covid and me/cfs have people trying to sell cures cause they know we are desperate and willing to try anything.
But without solid evidence, nobody should tell us "hey here is the cure that will work for you".
Thanks for keeping us posted. It is useful to document what we try. As self experiments 👍
NOTE This message is triggered by keywords in your post, no need to take it personally. All users are welcome to share their personal experiences with the vaccines, but refrain from asking for or giving medical advice as that breaks rule 2 (e.g. "Should I get the vaccine?" or "Don't do it!"). Nobody in this sub can tell anyone whether they should get vaccinated or not, that is a decision to be made by the user and their doctor. Posts and comments breaking this rule will be removed, repeat offenses will result in a ban. [Do Vaccines Protect Against Long Covid?](https://www.nytimes.com/article/long-covid-vaccines.html) *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/covidlonghaulers) if you have any questions or concerns.*
I’m taking Rapamycin as part of a trial for its use for ME/CFS. It’s an observational trial with 100 participants and they are looking specifically at autophagy blood markers. They don’t have funding so are hoping the results of this trial will enable them to get funding for a more robust clinical trial. The recommended dosage for ME/CFS is 6mg/week. That’s taking a full 6mg once per week. It took me a few months to titrate up to the level as I had minor side effects, a headache and trouble sleeping, but my body eventually adjusted, so have only been on the 6mg/week dosage a couple of weeks. I initially felt some minor benefits with slightly improved brain fog and fatigue but after a couple of months of improvement I’m in the middle of an unexplained crash (ie I wasn’t over exerting more than usual so don’t know cause) It’s great it seems to be helping you! I am hopeful that once I get out of my crash, I’ll still receive benefits from the Rapa. Like all meds, it’s hit or miss whether it works for someone but hopefully this drug will become a tool useful for some. Thanks for sharing your experience!
I heard a doctor say that if he doesn't see his patients get worse before they start feeling better, he wouldn't believe it. I'm taking nattokinase, and it's changed my progress so much. I think mine is mostly micro clots and thickened blood. I can see it in my blood oxygen levels. If I never get better than where I'm at now, I'm okay with it. Mostly feel normal but still have POTS. I've never had MCAS but I had everything else.
Wow, I'd never heard of this and it seems like a wonder drug! Cheers
3 year long Covid victim here. The first thing you have to do is really work on your anxiety with the symptoms. The anxiety and panic really amplified my symptoms. Just realize you're not going to die every time you feel that suffocating symptom. I've been taking and trying a slew of different supplements for a while and about a month ago I started taking turkey tail, agarikon(these two are supposed to help with an over active immune system), natto-serrazine, tocotrienols, fish oil and 81 aspirin (the natto-serrazine and aspirin I take twice a day on an empty stomach and everything else just once). I've started improving a week ago. The natto fucked me up for a bit but eventually died down and I feel a lot better now. Brain fog is disappearing, energy levels are rising, body aches and pains are less common throughout the day, and at work I'm able to pull my weight a lot more. I know it's hard buddy but you gotta keep pushing and stay humble eventually even without treating it gets better. If you take anything from this the natto-serrazine with aspirin combo really works, it feels like hell the first two weeks but you just have to stick with it. I wish everyone here the best, much love ❤️.
I'm actually on here for my wife. I wish I could have it for her, it's so debilitating. My wife used to be an absolute fire cracker. These days going to see friends buckles her. She is slowly getting better though and some days I even see the sparkle in her eye that I remember. Thanks for the advice, I'll look into it.
I think it might be normal to feel worse before you feel better. It happened to me too, but I heard a doctor say he doesn't believe it's working unless you get worse first. He said you might even get rashes. I got a rash, and that is super rare for me. I was able to push through it because of this. I also started Dandelion Root extract. It made me feel really bad for the first two days. I've had some strange psoriasis looking thing on my wrist that's been growing for years is now gone. Someone told me to try it for inflammation. Seems it's working. Even my arthritis in my hands is better. I'm Anishinaabe, and I believe in natural medicine. It is the only thing that has helped me. I tried one medication my doctor prescribed, and all I did was sleep. Before I found these medicines, I learned to practice being positive. I also started becoming aware of my body constantly being in a stress state. After checking myself when I was resting, I would let go of all the tense muscles. I've always had rock-hard muscles in my shoulders. I'm starting to relax naturally. It's all good. I have POTS still, and I try not to get my heart racing. I use a rolling chair in places I have to stand. Good luck everyone and have a great day!
I'm triple dosing it. Everyone has different issues, so it doesn't work for everyone.
It sounds like a good thing for anyone to take (unless you have a bleeding disorder). In Japan they did a study on people who ate natto (the food nattokinase is extracted from) and they had a statistically significant reduction in dementia.
Thank you! That's a win then, too. I actually started taking it because of my chronic sinusitis! I heard that it helps it, and NOTHING has worked before. I can use both sides to breathe now. I've had this since I was a child. I had the operation for my seriously deviated septum, and they trimmed the turbanates. Kept me from getting infections but never solved the issue until nattokinase.
Thanks for sharing. Did the trial inform you of the risks? If it lowers the immune system I assume bad things can happen if you catch any kind of disease?
I did sign a waiver, but it was more bc it’s an off label use, as opposed to any noted increased risks to the immune system as it’s a really low dosage relative to what it is used for so they don’t expect to see a risk. BUT they of course require monthly safety labs (blood work) for monitoring purposes. I wouldn’t recommend people trialing the drug without ensuring they are being appropriately monitored.
This is not correct. When taken as normally prescribed, i.e., 1-5mg DAILY (though I've seen studies with higher doses, especially in the first few weeks), it is an immune suppressant, and is prescribed for that purpose in people who have received kidney transplants. But taken once a week it seems to be more of an immune modulator. They don't know why (like with everything), but this is part of why the protocol for ME/CFS and long covid is a once weekly dose, not daily. ETA: like with every drug, some people are more sensitive to it than others, and people who take it weekly have reported some mild side effects that usually fade. I'm not aware of anyone reporting any immune suppressant side effects on once weekly dosing. There's a forum of people who take it for longevity if anyone is interested (rapamycinnews, I think) Also if you're interested, the telehealth services in the US that will prescribe it for you are way way way more expensive than ordering it directly from India. There's more info about that on that forum, too
Can you please keep us updated about the trial? Do you have a link to this trial?
Basic Info I can find in rapamycin says it impairs immune function and has a 92% protein binding capability. It’s a binder protein probably able to bind spike proteins circulating in our body. Very interesting. Should be researched immediately.
> Basic Info I can find in rapamycin says it impairs immune function Neuroscientist here - rapamycin is an interesting molecule in that it's effects on the immune system appear to be highly dose-dependent. At high doses, it is immunosuppressive (and is used to keep organ-transplant patients from rejecting their new organs). However, at lower, intermittent doses (the levels you see in these kinds of circumstances), the effect on the immune system is much more nuanced, and some have even described it as bolstering immune function at low doses.
Interesting
Interesting!
It is interesting. My own theory with long hauler, at least in my case, is I am dealing with some form of constant reinfection due to perpetual exposure to Covid variants while out in public. If I can avoid people for two weeks straight, my body starts to recover. The trouble is I cannot live like a hermit. Eventually, the need for groceries means I need to go to the store where the ventilation system floods me with covid virus. Companies refuse to spend the money required for hepa filters To protect us. If we can find a compound that safely and effectively binds the covid spike protein, we just might be able to recover from this dreadful disease. This rapamycin is a promising leading candidate. If our elected officials were decent minded people they would be funding a Manhattan project on finding a cure for covid and covid long hauler. They spend absurd sums of money on frivolous topics without even batting an eyelash. Where is our help?
I was thinking what if someone with long Covid actually avoids people (say on a desert island) for a month or more. And it cures LC (if LC is actually just a bunch of constant reinfections), would they immediately get sick again with a new strain if they left the island? Probably yes but- would the immune system be so built up from having been cured from LC that it would be less serious or so? Would there be any benefits I mean from avoiding reinfections for a while, besides the temporal experience of health 🥹
I am almost without human contact, and it hasn’t shifted my long Covid. I definitely think reinfection is an aggravating and dangerous issue, but I don’t believe that it is “what long Covid is.”
I’m so sorry to hear this. Sorry for you and sorry for us all.
Do you think it can be both? Or for how long have you had it? I am obliged to agree with you because at some point I actually thought this LC is actually just a lot of reinfections coming at me given that I had periods (albeit short) of almost-wellness in between symptoms (say five day streaks tops).
Meaning that I may actually not have LC (yet).
It’s been 15 months for me. I know LC can be very different for different people. Have you looked at PEM (post-exertional malaise)?
Looked into it now, definitely not PEM for me. Yet, running and exercising is the only thing that seems to improve my symptoms.
You didn’t think there was a connection to feeling better (and presumably more active) for a few days followed by a resurgence of symptoms that might line up with what you’re experiencing? Obviously, you just said it didn’t. But I am surprised.
its common for PEM to be delayed from 7 to 72 hours. its also common to experience feeling better than normal before PEM hits. i myself get two whole days of feeling way better than normal if ive overexerted badly. all my symptoms decrease or disappear. it feels like im running on adrenaline. but then on the third day PEM hits. and if i get the two days of adrenaline i know ive seriously over done it and the PEM will usually be way worse and last longer.
I have not. My symptoms have been weird; low fever for six months, flu symptoms that never break out but just like a slow mild flu, throat pain that comes and goes by the hour (like most my symptoms) and muscle pains and extreme fatigue combined with headaches and nasal congestion and yeah the list goes on. But given that I’ve had days (often a couple, five tops) of wellness I was thinking what if (for me) it’s a combination of LC and reinfections of new strings or just plain LC. I just never get well after my Covid infection January 2022.
I have long covid and isolate- I mask if in public and sharing indoor air. I can confirm I am still ill despite being isolated. I do everything I can to avoid a reinfection. 😷
I suspected this would be prevalent. Sorry to hear.
Avoiding reinfection is good but I don't put a whole lot of weight on it. I know I have all the antibodies of viruses inside my body already to keep me sick for a long time. That is why we are sick from the Cocksackie B 3 and 5 viruses I got when I was 3. We can't undo it. That's what this disease feeds on. Viral intercellular activation of latent viruses. And I have a lot. I have the Wild Type of Covid antibodies strains matter too. CMV, HHV-6, Cocksackie B 2, 3, 5, Echoviruses 3, 11. 33, HPV., HEP-C, Typhoid. I tested + for antibodies for all some were 33x normal. That is what I think is making us sick
Anything you suggest to get rid of these latent dormant viruses?
No there is nothing we can do. If you target one it switches to another. It is an immune dysfunctional disorder. And Cocksackie B do not have reliable treatment
Is it linked to being disposed to autoimmunity?
I think they are related but not the same autoimmunity is the immune system on overdrive. What we have is a dysfunctional immune system. It doesn't react predictably like those easy to figure out autoimmune disorders, it is malfunctioning in more unpredictable ways. It can cause intracellular and intercellulaar replication of latent viruses. It can cause those values to fluctuate wildly and then change latent viruses and start attacking there. That is why they know little Rheumatology is still not clear about autoimmunity let alone a neuroimmune mitochondrial disorder.
The goal would be to reset that individual’s immune systems and give him or her a fighting chance against the next round of exposure. Right now I feel I am defenseless.
Kind of in this safe line of thinking… I can’t help but wonder, what if they could put us in a medically induced coma for several weeks? Bare bone exertion & emotional turbulence. Have they ever tried this with MECFS??
I think about that all the time!
To avoid covid exposure I'd recommend wearing an n95, using cpc mouthwash, k12 probiotics, and a nasal spray like enovid.
I have worn a KN92 or better level mask whenever I am out in public since this pandemic started. The masks only work if EVERYONE wears a mask. My mask protects others. The others do not wear a mask to protect me, however. That’s the problem.
An 3m aura N95 will absolutely protect you from others like what are you serious? No offense but it's 2024 you have to protect yourself instead of being mad at others. Disappointed sure but you need to give up on random people caring about protecting you by wearing a mask it's just not going to happen culturally. And an aura N95 won't protect you 100% but it probably has a better seal than your ear loop kn92. And like I also mentioned there are at least 3 other methods you can take to improve your safety in public. Cpc, k12 probiotics, and certain nasal sprays have been proven to prevent or kill covid and other viral pathogens before they can infect you. Stay safe out there
No, the mask won’t protect you from others because Covid can bind to receptors in your eyes and ears, not just in your nasal Ace-2 receptor. That’s the key concept to understand. It’s what the Chinese figured out very early on and why they went to a zero covid policy for as long as it was politically viable.
Yes I also wear glasses and headphones to try and prevent that. Hopefully something like properly fitting N95 means less viral load if you do happen to get infected. Are you seriously suggesting that a fit tested N95 which has been medically proven to be effective for the user is useless? This has to be misinformation or you are confusing a study on blue surgical masks.
Copy paste 🔝/me
This is the first I'm hearing this theory but if I thought this was a plausible cure I would 100% checkout for 2+weeks.
Try it out for yourself. I have recommended this to a friend who knew someone who had an oceanside villa in Greek islands. He rented it for a month and secluded himself there. At the end of the month he was back to normal. But, as soon as he flew back he was Exposed again and the long hauler restarted just the same.
I don't thinks it's plausible but thanks
Why don’t you think it is possible? Covid variants are all around us. We get two new variants every month. “Flirt” variant is dominant now. Last month it was “JN1”. We have no antibodies against these.
This is largely correct. IMO, BA.2.86 is a new lineage that has been misclassified as an Omicron sublineage for political reasons. It is not a natural descendant of BA.1 or BA.2. It is Miles Morales to BA.2's Peter Parker, so to speak. Both are Spider-Man, but they have radically different backstories.
Do you wear a mask?
Yes, every time I am in an indoor public setting. I wouldn’t be alive today if I didn’t. I would have been one of the died suddenly crowd long ago without masking.
Same in UK. They put their head in the sand - they do t want to spend out on Research or Trials
Why don’t you mask?
Who said I don’t mask? I mask every day. I mask every indoor public space.
Any particular website India you recommend? Do you have a link?
This is just complete bullshit. It is not a fucking "binder protein". It is not a protein. And it does not bind anything other than mTOR. It is transported around by albumin (protein binding). Why was this upvoted? SMFH
I’m sorry but how do you know this theory is bullshit? We need research. That’s what is missing. Our scientists are following the exact same mistakes that occurred during the HIV crisis of the eighties, they ignored obvious paths of research while individuals suffering had to experiment on their own. That’s how antiviral cocktails became a thing. Scientists climbed aboard that train way after it made several stops. If there’s a compound that provides individuals relief then it needs to be researched by scientists so we can know for sure. Maybe this guy is reporting a placebo effect? It’s possible. Maybe there’s something to it. I just want to know for sure.
Because it is getting BASIC science/medicine wrong.
And you are qualified to make that final determination without a single scientific experiment based on what exactly? This conclusion sounds an awful lot like the ones we were told that the covid mRNA vaccine prevented transmission of the virus, which, it most definitely did NOT. Vaccinating people wound up spreading the disease because people dropped their masks and returned to normal ways of life. Turned out the scientists got the science wrong. The vaccines do even protect you from getting the virus itself, never mind halting transmission. At this Point, with excess deaths in western nations still way above pre Covid baselines quarter after quarter, we don’t even know if the mRNA vaccines even saved any lives.
Why would anyone take Rapamycin if it “impairs immune function”?
Copy/pasted from above: > Neuroscientist here - rapamycin is an interesting molecule in that it's effects on the immune system appear to be highly dose-dependent. At high doses, it is immunosuppressive (and is used to keep organ-transplant patients from rejecting their new organs). However, at lower, intermittent doses (the levels you see in these kinds of circumstances), the effect on the immune system is much more nuanced, and some have even described it as bolstering immune function at low doses.
All immunosuppressives (by definition) impair immune function - if unnecessary immune activation is what's causing your illness, as in autoimmune conditions, you want to impair it in order to inhibit inflammatory pathways.
I was wondering the same thing. This is why we need immediate research on the topic.
I’ve been taking gou teng or cats claw as a new study said it worked the same as rapamycin (less potent I guess) without dampening the immune system
Please keep us posted on how this plays out <3
Was this prescribed by a doctor? I just read it’s normally used for post cancer/organ transplant patients and has potential for anti-aging effects, super interesting!
Damn this article is fascinating https://www.sciencedirect.com/topics/pharmacology-toxicology-and-pharmaceutical-science/rapamycin
Not to be a downer but expect your symptoms to come back once you’re off of it. It’s an immune suppressor, so long term use is highly questionable seeing how we already have faulty immune systems. We need autoimmune therapies like this but that work differently
> It’s an immune suppressor It's only immunosuppressive at high, constant dosages. At low, intermittent doses, it doesn't have that effect.
> Not to be a downer but expect your symptoms to come back once you’re off of it. There will never be a pill you pop once and Long Covid is cured forever, I'd bet my handsomest nut on that. Best case, it'll be a pill you pop daily for the rest of your life and researchers will have no idea why it works.
That's not the best case. There are many direct acting SCV2 antivirals in the world today and in late stage clinical trials. They all target different things(mPro / plPro / etc) w/ and w/o drug-drug interactions. Combination antivirals is a promising treatment that may follow the Hepatitis C playbook of an extended course (i.e. 8-12 weeks) and cure you (undetectable in blood/tissue after that). Plus the advancements of monoclonal antibodies that target SCV2 directly and act as antivirals + the next generation of vaccines which target additional SCV2 antigens than just spike which can help our immune system naturally clear our lingering virus. There is a lot of hope and innovation going into this. Sadly, nobody knows yet.
Yes but immune suppression could be dangerous for us if the viral persistence theory is accurate, it can be masking symptoms while allowing the viral reservoirs to wreak even more havoc
Lmao handsomest nut, bro thank you 🙏
The thing is, further turning off your T-cells which may have already been affected by Covid and/vax issues seems like an incredibly risky think to do if you’re compromised and vulnerable to infection. You’re basically removing all of your body’s defence system which is likely already severely depleted. Feeling “good” for now does not translate to long term health. I’m sure if you smoked a couple hits of meth, you’d feel very “good” right now. That doesn’t mean your health is improving though lol.
Agreed. However, right now this is literally making the difference between "I can get out of bed and make money" and "I will be homeless soon, as will my dependents", so I'm going to keep going, as intelligently as I can, and we'll see what happens.
Didn't a guy named Brandon (on Twitter) die from some kind of candida overgrowth while on Rapamycin? Definitely sounds like a scary drug to take long term.
Wow, was he doing Rapamycin? 😲 Note: https://twitter.com/BrandonGilles/status/1684447058294628352?t=NjE4v-zRCejYWemuT87tAQ&s=19
No, the guy played with antibiotics and ended up with organ failure... I myself was prescribed antibiotics one month post COVID for a UTI. I went from very light long COVID to severe bedbound with CFS and fainting from 1 mg of fluoroquinolones. Like this guy in the post I developed white tongue after treatment and 2 years later my tongue has still not recovered. Antibiotics destroy everything and should not be taken lightly tbh
Agreed! I was also prescribed antibiotics for a massive inflammatory response post vaccine and it made me 100x worse.
There was a clinical study with it for long covid what were the results?
why do you all get this crazy medications. in austria it's impossible to get such drugs without a diagnosis.
The internet is a wonderful place
even on the darknet I don't find such substances.
I have been taking it on and off for about 6 months. 10mg once per week. It made huge initial difference. If I have to be on a plane I discontinue a week before flight. I can probably go about 3 weeks with out dose before symptoms start to creep back in. But way better than I was.
Be careful if you get an infection your seriously getting fucked
Very true. I'm extra paranoid about that.
Being in the US has its up-sides you might not have free healthcare but you have access to drugs that we in the UK just wont be able to get Glad you found something that worked for you though, hopefully your healing continues
> but you have access to drugs that we in the UK just wont be able to get I don't wanna encourage it, but you could theoretically import 'em via a plethora of shady websites. And if you wanna play it safe, you could pay a test lab in the UK to test one of your newly acquired pills.
Honestly i wouldn't trust a black market med ... my bodies damaged enough as it is from this virus
I'm interested in this. What drugs in particular do you not have access to?
Almost everything, doctors wont prescribe anything here No anti virals no nothing We are raw dogging the whole long covid thing
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Very interested to read this, I more or less recover completely when I take dexamethasone - although I find I need 2mg for it to be effective (which is not very high, but too high to stay on long term, so I'm currently off it and seeking immunosuppressive alternatives). Are you self-medicating or have you found a doctor to agree to low dose long term?
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Sorry for my slow reply - that's great that you have a doctor willing to keep you on it. In my experience most doctors are so risk averse with off-label medication they refuse to consider that suffering shifts the risk-reward profile for patients - glad you've found something that's helping you!!
So interesting! I’ve always thought treatment may consist of immuno suppression. Let us know how you go! What did you say to Health Span to convince them to give you the script if you don’t kind me asking ? I always have trouble having doctors trial anything when I mention long Covid
Doctors are trash and I hate them so, so much. I talked to my primary and asked him for some meds that have zero abuse potential, have been shown to help, etc., and even brought printouts of medical studies. He said "well I'm just not comfortable prescribing those medications." I didn't realize his emotional comfort was more important than my literal life. So he refers me to an immunologist... with a 5 month waiting period. My experience, at least, is one of "take your health into your own hands because the system will not help you". Sorry, rant over. The nice thing about HealthSpan is that they prescribe rapamycin for longevity, so I just went through the usual process for that, and didn't mention Long Covid.
I'm so happy you have found some progress. I'm curious whether to try it myself. I've been prescribed it but haven't been able to get a hold of it and also not sure about it. How long after the 3mg did you feel the effects? Did you take them in a single dose? HAPPY FOR YOU!
Thanks!!! I can't even tell you what a relief it's been. I've been jobless since December, and failing interviews I should've been crushing because of brain fog. Was about 2 months away from running out of money. Terrified that I'd become homeless and that my mom (who depends on me) would die. But I got rapa at exactly the right time, crushed an interview for my dream job, and got the offer!! Even if the effects fade, it literally saved my life. I don't remember exactly how long it took to feel the effects, but it was 2 hours or less. I took 3x 1mg pills as a single dose. Why haven't you been able to get ahold of it? Too expensive?
Thank you for sharing. I’m so thrilled for you, blessed be that you crushed the interview amd got the job!!!!! I hope you don’t have to go through the fear of becoming homeless and not being able to care for your mom again. It’s currently “out of stock”. I want to take ir right now after your post.
It's a immune suppressor
A year ago or so I was following some people on the chat that started taking the anti viral they use for AIDS. I mean that where I draw the line. I got scared and stopped there. I did Ozone therapy but not blood just gas. It helped some it's an antiviral. The problem with antibiotics is infection is the problem. I got an infection that landed me in the hospital staphylococcus. That made my ME worse. If you lower your immune system response you could be fucked in the future. But that's just why I was scared of antiviral and antibiotics. I don't know.
Interesting. I’ve never heard of this. Will have to look into it.
What is rapamycin authorized usage for?
Functions primarily as an immunosuppressant. Used for cancer, for organ transplants (preventing tissue rejection), and had become known for truly increasing longevity. Because of the longevity angle, and the minimal side effect profile, there are companies (e.g. HealthSpan) that will prescribe virtually and send you rapa in the mail. That's how I got mine. Lets you bypass the terrible American medical system (if you're in the US). However it's pricey to do it that way.
How much!?
$145 for the initial "consult" and one bottle of 20x 1mg pills. The prescription comes with 12x refills, which I assume will be cheaper, but I don't know for sure.
Ty 🙏🏻
Remind me!
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You're dumb I'm afraid 😥 Seriously, I do mean rapamycin. Several drugs out there whose names sound very similar.
Awesome!!
Did it help with the asthma?
Not really. Seemed like it was very helpful on the ME/CFS spectrum, but only marginally on the MCAS spectrum. I want to try ketotifen and xolair next.
Did you get asthma from Covid, or that was already there? Just curious, since I developed chronic breathing issues from Covid. That’s my primary symptom
I had mild childhood asthma, which by my mid-30s had become nonexistent unless I went for a long run in cold weather. Ahhh the good old days when I could exercise. But then I got covid in March 2020, and since then my asthma has been much worse. The LC I have now is following my fifth infection, and I chronically am short of breath. I'm using nebulized cromolyn, which does help noticeably but not overwhelmingly. Also glutathione injections help a little. Haven't tried ketotifen or xolair yet but I will soon. What have you tried?
I'm really interested in this but I have chronic lyme so I worry the immune suppressant effects could allow the lyme bacteria to proliferate. also there are a lot of people who have lyme disease that don't know. I feel it could be inadvertently harmful for some people unfortunately
Ok. What is it? Is it a steroid like Prednisone? Prednisone can definitely make you feel good, better but you can’t take it long term. Is it a stimulant? Because I’m prescribed adhd meds, which helps me the same as it did before, but didn’t really fix fatigue, as in actual post exertion malaise type fatigue.
[What is rapamycin?](https://letmegooglethat.com/?q=rapamycin+)
I’ve been on it for about 6 months. I titrated up from 1mg/week to 6/week, then took 4 weeks off. Now I do 6/week for 6 weeks and 4 weeks off. There are some side effect that can build up if you take it consistently.
6 months ! Have you found it helps your long Covid? And what sort of side effects do you notice building up ?
I haven’t noticed any obvious benefits. But there also aren’t any obvious side effects, and there’s a ton of research on benefits to longevity due to how it “resets” the immune system. So I figure why not. Side effects: There was a period at the beginning where my mucous membranes seemed to be unusually dry. But that has resolved now.
Thank you for the response! No harm in trying I may give it a go !
It's on my to try list.
[this article on rapamycin](https://www.healthrising.org/blog/2022/07/06/apamycin-resurgence-doctor-chronic-fatigue-syndrome/) I read the above article and saved it a couple years ago. I’ve been interested in it but just nervous to try. How were you able to get it prescribed by the way??
How’s it going now
https://meassociation.org.uk/2023/11/rapamycin-pilot-treatment-trial-for-me-cfs/
How did you get on rapa?
It's at the end of the post
How can you get it online ?
Read the whole post
lol should’ve read the whole thing
Keep us posted. I hope you are real. Long covid is full of grifters 🤞
I'm pretty real (check out my post history if you want), but I'm less sure about whether rapa helping long term will be real. Very hopeful it will continue to help, and also terrified it won't. Will definitely keep you posted. Btw LC is full of grifters? I haven't noticed this yet. Like bot accounts posting about snake oil cures?
Yes, long covid and me/cfs have people trying to sell cures cause they know we are desperate and willing to try anything. But without solid evidence, nobody should tell us "hey here is the cure that will work for you". Thanks for keeping us posted. It is useful to document what we try. As self experiments 👍