Glimmers of Hope: Post-COVID Syndrome Research

Karen. I am looking for a group of people that did not have COVID, but are experiencing increased autoimmune issues. I did have the 1st & 2nd COVID Pfizer vaccine shots.
I did have an autoimmune condition prior to vaccine, but have developed issues after taking the vaccine.

There are many people in the Neuro V Long-Haulers Facebook group who have new or worsened autoimmune reactions after the Covid vaccines,
myself included. In my case, the autoimmune reaction caused new onset sensory and motor peripheral neuropathy. I am much improved now at 19 months post Pfizer vaccine x 2.

In the middle of editing, it stopped letting me edit so here is the final post. A little different than above.

Hi. So I take LDN and have for a few years. The thing with it is it actually works holistically. In a very low dose, it shuts down your adrenals for about 3 hours while you sleep. The lower the dose the better. After that your endorphins kick into high gear and becomes a kind of "runners high" in that your endorphins go into overdrive. Helping reduce pain. It's so cheap and old, no drug companies want to do research! No money in it.

There is lots written about it online and millions are starting to take it. It's been known to cure Parkinsons, MS and even some cancers. There is a huge long list of medical problems it's been thought to help. It resets your adrenal glands. There is a pharmacist in FL who has his whole family on it. I spoke with him for an hour as I researched it for nearly a year before stating it. Very knowledgeable but there are secrets to it. And it's becoming so popular many pharmacies are mixing their own and might not be using short acting, and pressed the right way and potentially bad powders from bad overseas manufacturers. There is no brand name anymore, it's all generic so you can't just assume it's all equal as it's all the rage and unlike Stan (pharmacist) in FL, some don't know how to do it right.

You can't take any pain medicine when on it as this low dose med blocks the effects. I came off for surgery and didn't get right back on but now I've been on it for almost two years again. You don't always know it's actually helping until you come off sometimes so people stop after a month. It's a long game treatment. It can take even 2 years to start helping so any short study won't work and even comparing it to a control group is useless as all people have adrenal issues so it's not about an "illness" to cure in a month. I can't imagine any study that would show it works as you really need to plan on a ten year study with illnesses and without. The how many on it (%) didn't get cancer that the % of the gen pop did. That kind of thing.

Definitely worth looking into if you treasure wholism. Our adrenals are a mess. All of us. Children too. Stress. Adrenal insufficiency esp which is rarely diagnosed by western med but is real like I'm sure you know.

More and more illnesses are being found to be autoimmune. This is a real treatment worth trying for autoimmune conditions. It's just been FDA approved for CRPS I think (only off label use approval for LDN - some hope for a disease for which there is no treatment. Helps fibro etc.

I don't know about this study but please research it and don't eliminate it thinking it's just another drug. It's an anti-drug when used in tiny doses. It kind of functions like a homeopathic in my mind. Give a little to spark a big response. Check it out, seriously. NOT the 50mg! And naltrexone 50mg is not used to reverse an overdose. It does not remove an opioid from your body. Totally different drug. This is taken daily like the old Antabuse where the person has to want to stop using. Kind of the anti-methadone.

People who take the full 50 can actually die trying to get high. You can't get high on it so the chances of an overdose is higher as they can "die trying." You have to be willing to quick all opioids to use it.

Please research it.

I am not giving endorsement for the use of a med. This still needs to be ordered by your doctor and not many doctors understand even what it is. My doc has down I take 50/day so my insurance company probably thinks I'm a drug addict. As a nurse I mix it myself so 30 pills, about $20 lasts me about a year and a half! Best of luck all. I'm all about LDN as you can tell. It's hope for the hopeless.

But it's a long game. If you are not willing to give it more than a year, then I would say don't bother.

Karen. I am looking for a group of people that did not have COVID, but are experiencing increased autoimmune issues. I did have the 1st & 2nd COVID Pfizer vaccine shots.
I did have an autoimmune condition prior to vaccine, but have developed issues after taking the vaccine.

My husband is having this issue. It started a week or two after our second Pfizer vaccine. Nothing has helped and they haven’t found any answers with multiple blood tests, neuro visit, rheumatologist visit… it’s been a nightmare & his mental health is affected now too. There is also an odd side effect that occurs closely after eating. Would love any info or connection to anyone experiencing similar. We’ve had covid twice & he doesn’t get too sick with it.

My husband is having this issue. It started a week or two after our second Pfizer vaccine. Nothing has helped and they haven’t found any answers with multiple blood tests, neuro visit, rheumatologist visit… it’s been a nightmare & his mental health is affected now too. There is also an odd side effect that occurs closely after eating. Would love any info or connection to anyone experiencing similar. We’ve had covid twice & he doesn’t get too sick with it.

My husband is having this issue. It started a week or two after our second Pfizer vaccine. Nothing has helped and they haven’t found any answers with multiple blood tests, neuro visit, rheumatologist visit… it’s been a nightmare & his mental health is affected now too. There is also an odd side effect that occurs closely after eating. Would love any info or connection to anyone experiencing similar. We’ve had covid twice & he doesn’t get too sick with it.

I have trouble understanding why people blame the vaccine when they've had covid. Not being very ill with covid doesn't mean you're not going to get long covid in fact your chances of getting long covid or even higher.

I had a very mild case, in fact all I had was a sore throat for the first month. Do not have much of a cough even. I did end up with severe shortness of breath in month four of getting sicker and sicker, all tests negative - only to find out I had a collapsed lung that wasn't being treated because in October of 2020, nobody was taking long covid seriously.

I just found out this week, two and a half years later
With an 02 in the 80s, low 90s, eben 78 the other day, that I'm now needing oxygen 24/7. I had covid before the vaccines came out and I've had vaccines since then. I've also had covid again which caused a spread off my autoimmune pain disorder. I fear deeply that people are blaming the vaccine because they don't know they have had covid because of mild symptoms or just plain denial as I've seen with friends. Or they test negative and never eber tested positive; there's so many false negatives they blame the vaccine and then we end up in the worst trouble.

I'm sorry he doesn't feel well and I hope he starts to improve soon but I'm not so sure about the whole thing about blaming the vaccine. I'm seeing it happen much too often. And then we end up with a lot of anti-vaxxers and now kids are dying of measles again and on and on as suddenly nobody seems to trust ANY vaccine. I hear people say "but measles isn't that bad it doesn't kill people." That's because we have had the vaccine gor a long time that most people trusted until all this anti-covid vaccine started. I'm afraid a lot of disinformation about the covid vaccine is causing people to stop taking vaccines for everything.

People are on such denial about what can happen after covid. People need to stop being in denial about it. I have friends who haven't been able to breathe since covid and they blame asthma instead of covid. Or the vaccine. And end up on more and more asthma medication and more and more testing, don't stay home when they probably do have covid, one even couldnt taste or smell but they test negative so they still went to work.

I'm not saying that the vaccine doesn't affect people at all, what I know from experience is if the vaccine causes you misery then covid could really be bad for you to get, inflammation-wise.

I hope you find an answer that's treatable because long covid is not treatable and people just don't understand. My uncle is doing the same thing. Had a mild case of covid and now he's got parkinsonian symptoms but blaming the vaccine instead of blaming covid. The symptoms started after covid and are well-known symptoms of that can occur with long covid.

I do know that they are finding some of the vaccines are causing trouble, but it's very specific related to the company and the shot but I wonder if they also are blaming the vaccines when it's really a problem with people who have had covid and are saying they never did. They have said don't get the shot close to the time you have covid. People are getting the flu shot and the covid shot at the same time which means neither one of them are effective. According to my cardiologist who treats a minmum of 10 young people a day now with heart disease from covid.

Yep there's a lot we don't know but mostly I think we don't know how much long covid there is and how serious it is. People don't know that people like me exist. My life is basically over because of covid I'm on oxygen 24/7. I'm in pain, on crutches and this is long covid it's not the vaccine. There was no vaccine.

I know this is really going to make anti-vaxxers upset but I think it's worth not blaming everything on the vaccine. I'm just saying... When the vaccine for covid is being blamed for all of long covid issues, then people go in the opposite direction and stop all vaccines. And that's undoing a hundred years of Medical research. Shall we stop all antibiotics?

I just wanted to add that I'm not saying it's not from the vaccine I'm not saying it is from the vaccine I'm just saying don't rule out long covid. More people end up with long covid for a mild case than they do from a moderate case.

Especially if like me you have had it twice, never tested positive in my life, but my IGG blood test shows I definitely had it.

Best of luck. Betty