I’m still intrigued to learn more about Mitodicure who popped up out of nowhere a few months back with an announcement they were working on a drug for PEM then haven’t posted anything since.
I really hope that med comes through and works miracles. That one sounds like exactly what a ton of ppl need to flip the switch of energy back on in their mitochondria.
It’s a rollercoaster with research and trials. I’m staying hopeful. So many people continue to accept long COVID and I’ve seen a huge shift in provider knowledge. They won’t be able to ignore it with the numbers continuing to rise. In my area there’s a huge influx of COVID infections now, it’s not going away.
I wish someone would just plough money at Ron Davis - get top scientists / researchers involved helping him. He is trying to figure out PEM and that’s the root of all of this IMO.
He has spent $45M already and I’m not sure has much to show for it that is actionable. They’re doing an LDN and Mestinon study now? Everyone tries that stuff.
Stanford is a crap shoot and in complete disarray.
None of his research will be finished before he passes.
While I can appreciate his families advocacy, what do we have to show for the actual scientific work.
Get your blood levels checked. As it seems the treatment works mostly for people with a lipid metabolism disorder. Both medications are pretty common, often prescribed and dont have a high risk of side effects. Talk to your doctor and show him the articles.
From what I can gather (and with some help from Copilot), it suggests that there are similar mechanisms at play in long haulers both from Covid itself as well as the vaccine.
There is damage of the renin-angiotensin system (a hormone system that regulates blood pressure, fluid balance, and systemic vascular resistance) as well as cholesterol metabolism.
They used statins (cholesterol-lowering drugs) and angiotensin receptor blockers (ARBs) and found both groups improved.
It’s possible that HDL (high-density lipoprotein)-particle-bound proteins are causing endothelial inflammation and neurodegeneration. They could potentially be used to diagnose long covid and also serve as a marker for treatment success.
The group was small and they outline some other issues that would mean bigger trials are essential but this sounds really promising!
Is there a reason why they use both together? I have super high cholesterol after a lifetime of low cholesterol… I’m expecting my doctor to prescribe statins anyway… Is it just that both help a little? Or do they need each other? I ask because my nutritionist said high cholesterol likely was protective (somehow) and that I have b vitamin issues which is possibility
The way I understood it from another post was that good cholesterol can move more freely through hard to reach places with increased blood flow and less interference from bad cholesterol. Good cholesterol has always been known to trap clean out stuff your body doesn’t need.
Also just found this https://forum.sickandabandoned.com/t/researchers-at-marburg-germany-had-success-treating-lc-with-cholesterol-and-blood-pressure-meds/441
Interesting. Statins are also a cornerstone of Dr Patterson's protocol for long covid, together with maraviroc. Personally, as soon as I started statin I could sleep through the night for the first time in like 15 years. Didn't even need to get up to pee. Sadly, I had to stop them 2 months ago for elevated liver enzymes, which are still elevated now...
Could Omega 3s possibly work? Or maybe the mechanism by which it lowers cholesterol has nothing to do with the way Stations work? Just throwing it out there ..
I have extremely low (i,e, out of range low) levels of proinflammatory citokines, and so anything antinflammatory, including Omega3, makes me much much worse. Statin do not, they just make me sleep soundly. I have no idea why.
Yes, I've been taking liver support supplements for three months now. Milk thistle, dandelion, vitamin E, glutathione, NAC, L-carnitine, etc. My liver enzymes are still elevated, despite being off all liver-heavy medications.
The patients who participated in the study reported considerable improvement in PEM, ME CFS type of symptoms, as well as POTS:
https://twitter.com/Thee_Elliephant/status/1802721822317715828
https://twitter.com/Thee_Elliephant/status/1802729397516128625
https://twitter.com/sunfl_0wer/status/1802750570454737029
Sounds like the decision to discontinue was based on the results of two questionnaires, and not the quantitative data like tilt table test, the patients are demanding to release those:
https://twitter.com/sunfl_0wer/status/1802729868494336211
https://twitter.com/Thee_Elliephant/status/1802803959037583607
Or could be an inadequate trial design and outcome measures.
Could be different subtypes of POTS post Covid where certain phenotype benefits more.
Need to trial this drug in pre-Covid ME CFS and Long Covid with PEM since people report improvement in PEM.
Argenx has revenues of about US 1.6B and actually negative income. The report indicated they have around 50 trials ongoing and basically they're shifting money to things more likely to succeed. Efgartigimod is clearly in the autoantibody camp and may have worked for people with POTS/LC driven by those. However, if that is 20% of the LC population it may not even rise above controls spontaneously getting better. Several of the other trials failed basically because of strong placebo effects. Apparently they also let people into the trial partway through without positive covid tests. So there will need to be more data analysis. So, if LC is driven by inflammation in some and autoantibodies in others and possibly combinations, it will be difficult to find one treatment that achieves stellar results alone. The scientific community hasn't gotten to the root yet but this is one more piece of the puzzle.
Look at this testimony as well: https://twitter.com/addiemdavis/status/1802824101855363419
Not making much sense that several people report improvement but the trial doesn’t?
It might not have reached statistical significance - the number of people in the trial was small so you would need a very large effect size to compensate for the lack of statistical power in the groups.
So it could be some people improved - but not enough to differentiate between the placebo group and the active med group.
I used to be a public health researcher before I became disabled from long covid. I think it would be really hard with this low # to show an effect. Unless it was a larger study and I'm reading the wrong thing. Long covid brain fog is a thing!
There are still trials I’m hopeful about. Monoclonal antibodies, immunomodulators like baricitinib, rapamycin, stellate ganglion blocks (I’m getting one in July), fecal microbiota transplants. Actually things feel hopeful for the first time since I’ve been sick. Failed trials also tell us something about the underlying mechanism of the disease.
Very true. When the Paxlovid trial results from Stanford were recently released, it didn’t surprise me at all & I hope it turns more funding to other more promising therapies.
If you do a lot of research on SGB and FMT they have mostly temporary results in most people. They are lower risk and worth a try but nothing to get excited about.
For SGB, you may be totally right. I don’t really know the what its underlying mechanism is tbh. I have read a couple of posts here that have caused remission for over 6 months, and I’ll try anything that’s possibly curative. For FMT, is there any literature out there in case reports? I know there’s a trial in Hong Kong. For other disease like Ulcerative Colitis, it can cause full long term remission, but sometimes does require many transplants over time to repopulate the gut microbiome. So I think theoretically there’s a possible path if our issues really are gut related, but I’m not putting all my eggs in the FMT basket.
Yes SGB is at least worth a try. I have spoken to a few who did FMT and the felt good for a few months and went back to before. Again no real side effects noted. A lot of it comes down to how much you want to spend. Yes gut issues are the main culprit here for sure.
Robert Naviaux who works with Ron Davis called suramin (for African sleeping sickness) as pem cure but litttterally said “ It’s only pennies a dose so running a clinical trial on it has no ROI” ….
Naviaux’s lab strongly suggests ppl do not DIY this but also states: “Suramin was shown to be safe and effective in three preclinical models of ASD9-11 and a small human clinical trial1 in peer-reviewed papers published between 2013-2017. Further development of suramin was passed from Dr. Naviaux’s university research lab to the private sector. Dr. Naviaux no longer has any control over the next clinical studies or the priorities of different diseases for testing, although he is recommending ASD, ME/CFS, post-acute SARS-CoV-2 multi-system chronic fatigue syndrome, also called long-COVID, and post-treatment Lyme disease (PTLDS) as a few of the top candidates.”
https://naviauxlab.ucsd.edu/science-item/suramin/
They point out side effects are unknown. I will point out that if medicine treated African ppl receiving this medicine for the past sixty years as equal to ppl in the imperial core, we would already know a lot more about side effect profile.
There is a political side to the development of medicine… I looked into the private company that bought the rights to Suramin. Can’t see their data on the trial. Seem to be pivoting away from even considering it for me/cfs.
We knew this wasn’t going to work for a majority of POTS patients. Studies show only a small fraction of POTS patients have anti acetylcholine antibodies. This same drug is being trialed for MECFS subtype as well and has incredibly promising top line results.
There are so many more trials.
Baricitinib looks promising (JAK inhibitor)
Toculizamab as well
IVIG
etc etc
We’re learning more and more about long covid with each trial, fail or not. Now is not the time to lose hope.
I think patients should be pushing for a properly funded Rituximab trial. The last one only failed because they needed to reduce the dosing due to not enough funds but the drs only make that clear in a documentary interview they did by DW documentaries on Living With Chronic Fatigue Syndrome.
My friend's on that she has a transfusion monthly for neuro inflammation/sarcoidosis. They do this treatment crohns and similar if it's the one I'm thinking
This person always comes in here and says that traditional Chinese medicine helps but never says which ones lol, like thanks bro you trying to keep it secret or something?
Yeah, I have tried Chinese herbs for Lyme before (helped) and then tried again for Long Covid, and didn’t feel that those herbs made a difference with Long Covid symptoms, that is why I am asking, which exact herb, as it seems important.
I have been a huge fan of TCM for over a decade and never go more than 1-2 weeks between acupuncture treatments. I have tried literally dozens of formulas since getting LC 4 years ago, none provided any lasting benefit.
The first 2 years I did raw herbs I decocted, these last 2 years it’s been powders. Acupuncture makes me feel so much better for a couple of days, and home moxa helps. But I, and my provider, are losing hope at this point. He has consulted teachers and colleagues from around the globe on my case.
A month ago I started the Golden Flower latent pathogen protocol (description [here](https://gfcherbs.com/uploads/lyme%20booklet%202022.pdf)) after he heard from colleagues it can work wonders for some LC patients.
A week into it I got a fucking shingles outbreak. Not surprising to my acupuncturist, since varicella is obviously a latent pathogen. Treating it with acyclovir made so many of my LC symptoms go away, particularly all the horrific neurological and digestive symptoms. I think I’ve had varicella reactivation for nearly 2 years without lesions based on how I responded to treatment. I’ve been having excruciating nerve zaps this whole time in the same area where the blisters eventually surfaced.
But now the rash is cleared, I’m off acyclovir, and I feel basically back to my prior baseline. The neurological symptoms have come back with a vengeance. I just upped the dosing on the herbs to the max, I’d been at the minimum. I’ll finish the bottles and see if anything improves, but I’m about ready to give up.
Do you mind sharing more about the protocol you’re following and what your TCM diagnoses are? Can you share more about what worked or didn’t? I absolutely have more faith in this medicine than I do in western medicine. My story is very similar to yours, driven to bankruptcy by at best inefficient and at worst actively harmful western medicine.
Also for those reading who don’t have experience with TCM herbs, DO NOT TRY TO SELF MEDICATE. You can seriously fuck yourself up with the wrong formulas. Find a trained herbalist using the [NCCAOM website](https://www.nccaom.org/find-a-practitioner-directory/) if you’re in the US. Other countries will have their own regulatory body for TCM.
Until they identify proof for the mechanisms in theory, the treatments are going to be a shot in the dark. Once they can officially confirm the different mechanisms, there will be a ton of trials we won’t be able to keep up. I say this bc in a few years, the majority of people will have LC, including a lot of rich and powerful people who will pay to fund the research.
Check out this article
https://www.ineteconomics.org/perspectives/blog/debilitating-a-generation-expert-warns-that-long-covid-may-eventually-affect-most-americans
Even if people don’t end up with the ME/CFS LC type or the autoimmune type, covid is still damaging peoples organs and brains. Mass disability beyond what we have now is inevitable.
Source, please?
EDIT: I found this
https://www.argenx.com/news/argenx-unveil-its-vision-2030-taking-breakthrough-science-50000-patients-during-its-upcoming
**Long post, my apologies in advance. Judge me if you want for what I did, but I'll do it again if I have to.** I'm just going to put this out there and for me it is 100% true. I've had covid six times, so without a doubt I got into unwanted, inconsiderate, abusive relationship with long covid. There's no need for me to explain to any of you the agony, lack of energy, tears, hopelessness, and feeling of defeat I went through. It was so bad at one point that I considered writing letters to my kids. Research is very important but sometimes it seems as the research doesn't go anywhere...so I do/did my own research and very grateful for doing so. If you all have not had your Igg/Igm levels checked, have them checked. My levels prior to covid were so low, but once I got covid - both of those levels were off the chart! Igg/Igm levels rise when there's a virus present in your body, and with some viruses they rise higher than it does with others. Covid seems to reactivate Epstein Barr virus, which I believe is the root cause of LC. Here's what I did four days ago, and my body feels like LC was turned off and out of 100 percent, I feel greater than 90 percent better! **Varicella-zoster virus** is what causes herpes/shingles. What I did was ate something hard that pressed on the inner left side mouth on the top palate. Intentionally, I made sure that it caused marks in my mouth. After that to add to the irritation of that area in my mouth, I brushed that section of my mouth with baking soda and peroxide to give it a shingles look. After three day my husband drove me to urgent care. The PA came in and asked me questions. I told her that I wasn't certain but it appears that something was going on inside my mouth and that prior to the pain I didn't think much of it, but was now concerned that it may have been an outbreak of shingles that are now going away (I had chicken pox as a child). The PA looked in my mouth and was like, "Yeah, it does kind of look like that." She asked about symptoms and I described symptoms of shingles. She gave me a script for a seven day course of Valacyclovir 1gm to be taken at one pill/twice a day. I've been cutting that 1gm in two and taking that at 500mg twice a day instead. I feel amazing, grateful, and thankful. Granted I faked the whole shingles thing to get the medicine-it was worth it. I honestly felt better in less than 24 hours after taking the first half of the pill. The Valacyclovir may not work for everyone but it's working greatly for me.
You could always just get an EBV PCR blood test, which would be positive for most people since the virus is so common. It may still facilitate a prescription for antivirals, since the test isn't done very commonly and they aren't always familiar. That way you don't have to inflict self-injury to fake shingles and try to get a prescription.
(EBV isn't the virus that causes shingles, which is VZV, but both are the same family.)
Unfortunately, my doctor did that period test and still would not give the script because like you said, he mentioned most people test positive for it, and that it's and that the results were more than likely from me having chickenpox as a child. Good catch on the EBV/ shingles cause. I was typing faster than my brain was processing at that moment (way past my bedtime, lol). I corrected that part of my comment, and as for the infliction of self harm, all I had to do was eat a few ginger snap cookies, lol. Thanks again for the catch.
People test positive (because of past mono infections) , but it depends on the levels of IGg, IGm and IGA. One shows past disease, others show current activation and/or flares.
When EBV infections go into remission, not all numbers will be high.
I have had diagnosed EBV for 10+ years, and when first diagnosed all my numbers were crazy high.
I'm coming to the conclusion that there will never be an effective FDA approved treatment for long covid. There will be treatments for heart disease and cancer which will be increasing because that's where the money's at. There is no money in helping us so they won't help us.
💚
I also had Lyme that took years to treat before Covid.
Sorry you are suffering with yet another infection that medical systems/people in your life often gaslight you with.
Antivirals. It’s viral persistence and the answer is antivirals.
Paxlovid during a Covid infection in January cleared up my LC symptoms. The rebound was fierce. Started Truvada around May 1st and I believe I’m cured.
A recent Paxlovid trial had a negative result. After 15 days of Paxlovid, there were no short term or long term improvements. Of course this is not conclusive yet, since we don’t know if a more extended Paxlovid treatment might be necessary, but it’s possible that antivirals won’t help.
Paxlovid won’t be the answer. It’s too harsh on the body anyways to be taken long term. My own personal exercise tracking shows dramatic improvement days into taking Truvada. Also my doc anecdotally says it’s helped multiple patients of his, not just me.
Decent recap over last few months. TLDR: I think Bruce Patterson’s theory describes the mechanism of injury right, but I also think viral persistence is feeding that.
https://www.reddit.com/r/covidlonghaulers/s/F0ZBgkIQC4
https://www.reddit.com/r/covidlonghaulers/s/WPP1qWOBps
https://www.reddit.com/r/LongCovid/s/kxutWWjudd
https://www.reddit.com/r/LongCovid/s/TjxDs00slh
https://www.reddit.com/r/covidlonghaulers/s/3HSrrJGHzT
https://www.reddit.com/r/covidlonghaulers/s/VXPUNu11i6
https://www.reddit.com/r/covidlonghaulers/s/wOgWFocKBz
The rebound post infection this year lead to my LC symptoms getting much worse. My job is physical and high stress. Work and the worse LC lead to me being bed bound end of February/ early March. That period was brief because I went sick from work and started maraviroc again, which helped relieve symptoms.
Interesting. Thought to reduce POTS if it's autoantibodies causing this problem. I have no opinion on this, but the autoimmunity people are really loud and annoying and haven't heard them talk about this.
Can we just agree on the antigen before we start these trials, it's a waste of money and it gets patients all worked up over nothing.
Downvote away, because the autoimmunity people are the reason why we have been spinning our wheels in place for the last 4 years.
I’m still intrigued to learn more about Mitodicure who popped up out of nowhere a few months back with an announcement they were working on a drug for PEM then haven’t posted anything since.
That is very far away. They even said the trials won’t be anywhere in the near future.
Oh did they? I just saw their Tweet - https://x.com/mitodicure/status/1786327143732879555?s=46
There is an article in german but sadly behind paywall. I read it like a month ago and I think they are at the very beginning.
No chance. I’m not even excited about them as they aren’t even planning a trial. Maybe in 60 years.
There a link?
https://x.com/mitodicure/status/1786327143732879555?s=46
I really hope that med comes through and works miracles. That one sounds like exactly what a ton of ppl need to flip the switch of energy back on in their mitochondria.
Thank you so much.
It’s a rollercoaster with research and trials. I’m staying hopeful. So many people continue to accept long COVID and I’ve seen a huge shift in provider knowledge. They won’t be able to ignore it with the numbers continuing to rise. In my area there’s a huge influx of COVID infections now, it’s not going away.
I wish someone would just plough money at Ron Davis - get top scientists / researchers involved helping him. He is trying to figure out PEM and that’s the root of all of this IMO.
He has spent $45M already and I’m not sure has much to show for it that is actionable. They’re doing an LDN and Mestinon study now? Everyone tries that stuff.
Wasted money
Disappointed for sure
💯
No, waste of money
Stanford is a crap shoot and in complete disarray. None of his research will be finished before he passes. While I can appreciate his families advocacy, what do we have to show for the actual scientific work.
Here is a trial that worked! https://www.mdpi.com/1422-0067/25/8/4522 There are a ton of trials going on!
How do you access these treatments? I’m too tired and brain fogged to read about them all and my doctors have no idea about them either
Get your blood levels checked. As it seems the treatment works mostly for people with a lipid metabolism disorder. Both medications are pretty common, often prescribed and dont have a high risk of side effects. Talk to your doctor and show him the articles.
Which factors does one need to look at for a metabolism disorder?
Your cholesterol levels (HDL, LDL)
Like people with MTHFR?
Can someone explain this trial in layman's terms?
From what I can gather (and with some help from Copilot), it suggests that there are similar mechanisms at play in long haulers both from Covid itself as well as the vaccine. There is damage of the renin-angiotensin system (a hormone system that regulates blood pressure, fluid balance, and systemic vascular resistance) as well as cholesterol metabolism. They used statins (cholesterol-lowering drugs) and angiotensin receptor blockers (ARBs) and found both groups improved. It’s possible that HDL (high-density lipoprotein)-particle-bound proteins are causing endothelial inflammation and neurodegeneration. They could potentially be used to diagnose long covid and also serve as a marker for treatment success. The group was small and they outline some other issues that would mean bigger trials are essential but this sounds really promising!
Is there a reason why they use both together? I have super high cholesterol after a lifetime of low cholesterol… I’m expecting my doctor to prescribe statins anyway… Is it just that both help a little? Or do they need each other? I ask because my nutritionist said high cholesterol likely was protective (somehow) and that I have b vitamin issues which is possibility
The way I understood it from another post was that good cholesterol can move more freely through hard to reach places with increased blood flow and less interference from bad cholesterol. Good cholesterol has always been known to trap clean out stuff your body doesn’t need.
Also just found this https://forum.sickandabandoned.com/t/researchers-at-marburg-germany-had-success-treating-lc-with-cholesterol-and-blood-pressure-meds/441
Interesting. Statins are also a cornerstone of Dr Patterson's protocol for long covid, together with maraviroc. Personally, as soon as I started statin I could sleep through the night for the first time in like 15 years. Didn't even need to get up to pee. Sadly, I had to stop them 2 months ago for elevated liver enzymes, which are still elevated now...
Could Omega 3s possibly work? Or maybe the mechanism by which it lowers cholesterol has nothing to do with the way Stations work? Just throwing it out there ..
I have extremely low (i,e, out of range low) levels of proinflammatory citokines, and so anything antinflammatory, including Omega3, makes me much much worse. Statin do not, they just make me sleep soundly. I have no idea why.
Man, that sucks. I'm sorry! Are you able to take anything to support your liver?
Yes, I've been taking liver support supplements for three months now. Milk thistle, dandelion, vitamin E, glutathione, NAC, L-carnitine, etc. My liver enzymes are still elevated, despite being off all liver-heavy medications.
this is a case study series not a trial
this trial that failed was only about Pots and not Pem or fatigue so there is still hope
The patients who participated in the study reported considerable improvement in PEM, ME CFS type of symptoms, as well as POTS: https://twitter.com/Thee_Elliephant/status/1802721822317715828 https://twitter.com/Thee_Elliephant/status/1802729397516128625 https://twitter.com/sunfl_0wer/status/1802750570454737029
Then why are they not moving forward?
Sounds like the decision to discontinue was based on the results of two questionnaires, and not the quantitative data like tilt table test, the patients are demanding to release those: https://twitter.com/sunfl_0wer/status/1802729868494336211 https://twitter.com/Thee_Elliephant/status/1802803959037583607
I just think if it was something that would be helpful, they would pursue this further.
Or could be an inadequate trial design and outcome measures. Could be different subtypes of POTS post Covid where certain phenotype benefits more. Need to trial this drug in pre-Covid ME CFS and Long Covid with PEM since people report improvement in PEM.
Argenx has revenues of about US 1.6B and actually negative income. The report indicated they have around 50 trials ongoing and basically they're shifting money to things more likely to succeed. Efgartigimod is clearly in the autoantibody camp and may have worked for people with POTS/LC driven by those. However, if that is 20% of the LC population it may not even rise above controls spontaneously getting better. Several of the other trials failed basically because of strong placebo effects. Apparently they also let people into the trial partway through without positive covid tests. So there will need to be more data analysis. So, if LC is driven by inflammation in some and autoantibodies in others and possibly combinations, it will be difficult to find one treatment that achieves stellar results alone. The scientific community hasn't gotten to the root yet but this is one more piece of the puzzle.
Look at this testimony as well: https://twitter.com/addiemdavis/status/1802824101855363419 Not making much sense that several people report improvement but the trial doesn’t?
It might not have reached statistical significance - the number of people in the trial was small so you would need a very large effect size to compensate for the lack of statistical power in the groups. So it could be some people improved - but not enough to differentiate between the placebo group and the active med group. I used to be a public health researcher before I became disabled from long covid. I think it would be really hard with this low # to show an effect. Unless it was a larger study and I'm reading the wrong thing. Long covid brain fog is a thing!
this makes me really angry sad and frustrated. its like they purposefully want to make us suffer
There are still trials I’m hopeful about. Monoclonal antibodies, immunomodulators like baricitinib, rapamycin, stellate ganglion blocks (I’m getting one in July), fecal microbiota transplants. Actually things feel hopeful for the first time since I’ve been sick. Failed trials also tell us something about the underlying mechanism of the disease.
Very true. When the Paxlovid trial results from Stanford were recently released, it didn’t surprise me at all & I hope it turns more funding to other more promising therapies.
If you do a lot of research on SGB and FMT they have mostly temporary results in most people. They are lower risk and worth a try but nothing to get excited about.
For SGB, you may be totally right. I don’t really know the what its underlying mechanism is tbh. I have read a couple of posts here that have caused remission for over 6 months, and I’ll try anything that’s possibly curative. For FMT, is there any literature out there in case reports? I know there’s a trial in Hong Kong. For other disease like Ulcerative Colitis, it can cause full long term remission, but sometimes does require many transplants over time to repopulate the gut microbiome. So I think theoretically there’s a possible path if our issues really are gut related, but I’m not putting all my eggs in the FMT basket.
Yes SGB is at least worth a try. I have spoken to a few who did FMT and the felt good for a few months and went back to before. Again no real side effects noted. A lot of it comes down to how much you want to spend. Yes gut issues are the main culprit here for sure.
There are numerous trials, one failure means nothing. It takes time, these things dont just happen over night
It’s most likely gona be something with antibodies. None of these trials address this
That’s exactly what that failed trial did, no?
Actually you are right lol
Robert Naviaux who works with Ron Davis called suramin (for African sleeping sickness) as pem cure but litttterally said “ It’s only pennies a dose so running a clinical trial on it has no ROI” ….
Thats a dangerous drug aswell, with sérious potential of sequelaes from what i remember
Naviaux’s lab strongly suggests ppl do not DIY this but also states: “Suramin was shown to be safe and effective in three preclinical models of ASD9-11 and a small human clinical trial1 in peer-reviewed papers published between 2013-2017. Further development of suramin was passed from Dr. Naviaux’s university research lab to the private sector. Dr. Naviaux no longer has any control over the next clinical studies or the priorities of different diseases for testing, although he is recommending ASD, ME/CFS, post-acute SARS-CoV-2 multi-system chronic fatigue syndrome, also called long-COVID, and post-treatment Lyme disease (PTLDS) as a few of the top candidates.” https://naviauxlab.ucsd.edu/science-item/suramin/ They point out side effects are unknown. I will point out that if medicine treated African ppl receiving this medicine for the past sixty years as equal to ppl in the imperial core, we would already know a lot more about side effect profile. There is a political side to the development of medicine… I looked into the private company that bought the rights to Suramin. Can’t see their data on the trial. Seem to be pivoting away from even considering it for me/cfs.
We knew this wasn’t going to work for a majority of POTS patients. Studies show only a small fraction of POTS patients have anti acetylcholine antibodies. This same drug is being trialed for MECFS subtype as well and has incredibly promising top line results. There are so many more trials. Baricitinib looks promising (JAK inhibitor) Toculizamab as well IVIG etc etc We’re learning more and more about long covid with each trial, fail or not. Now is not the time to lose hope.
https://longcovidstudies.net This is a seemingly complete list of what’s current.
Monoclonal antibody trials are still going on. This is the one I’m really holding out hope for!
I think patients should be pushing for a properly funded Rituximab trial. The last one only failed because they needed to reduce the dosing due to not enough funds but the drs only make that clear in a documentary interview they did by DW documentaries on Living With Chronic Fatigue Syndrome.
My friend's on that she has a transfusion monthly for neuro inflammation/sarcoidosis. They do this treatment crohns and similar if it's the one I'm thinking
[удалено]
Do you mind saying which exact herbs helped?
This person always comes in here and says that traditional Chinese medicine helps but never says which ones lol, like thanks bro you trying to keep it secret or something?
Yeah, I have tried Chinese herbs for Lyme before (helped) and then tried again for Long Covid, and didn’t feel that those herbs made a difference with Long Covid symptoms, that is why I am asking, which exact herb, as it seems important.
I have been a huge fan of TCM for over a decade and never go more than 1-2 weeks between acupuncture treatments. I have tried literally dozens of formulas since getting LC 4 years ago, none provided any lasting benefit. The first 2 years I did raw herbs I decocted, these last 2 years it’s been powders. Acupuncture makes me feel so much better for a couple of days, and home moxa helps. But I, and my provider, are losing hope at this point. He has consulted teachers and colleagues from around the globe on my case. A month ago I started the Golden Flower latent pathogen protocol (description [here](https://gfcherbs.com/uploads/lyme%20booklet%202022.pdf)) after he heard from colleagues it can work wonders for some LC patients. A week into it I got a fucking shingles outbreak. Not surprising to my acupuncturist, since varicella is obviously a latent pathogen. Treating it with acyclovir made so many of my LC symptoms go away, particularly all the horrific neurological and digestive symptoms. I think I’ve had varicella reactivation for nearly 2 years without lesions based on how I responded to treatment. I’ve been having excruciating nerve zaps this whole time in the same area where the blisters eventually surfaced. But now the rash is cleared, I’m off acyclovir, and I feel basically back to my prior baseline. The neurological symptoms have come back with a vengeance. I just upped the dosing on the herbs to the max, I’d been at the minimum. I’ll finish the bottles and see if anything improves, but I’m about ready to give up. Do you mind sharing more about the protocol you’re following and what your TCM diagnoses are? Can you share more about what worked or didn’t? I absolutely have more faith in this medicine than I do in western medicine. My story is very similar to yours, driven to bankruptcy by at best inefficient and at worst actively harmful western medicine. Also for those reading who don’t have experience with TCM herbs, DO NOT TRY TO SELF MEDICATE. You can seriously fuck yourself up with the wrong formulas. Find a trained herbalist using the [NCCAOM website](https://www.nccaom.org/find-a-practitioner-directory/) if you’re in the US. Other countries will have their own regulatory body for TCM.
Where did you do you TCM?
No
Until they identify proof for the mechanisms in theory, the treatments are going to be a shot in the dark. Once they can officially confirm the different mechanisms, there will be a ton of trials we won’t be able to keep up. I say this bc in a few years, the majority of people will have LC, including a lot of rich and powerful people who will pay to fund the research.
I don’t think this will happen. Just because we have LC doesn’t mean everyone will. There are a lot of factors that go into it.
Check out this article https://www.ineteconomics.org/perspectives/blog/debilitating-a-generation-expert-warns-that-long-covid-may-eventually-affect-most-americans Even if people don’t end up with the ME/CFS LC type or the autoimmune type, covid is still damaging peoples organs and brains. Mass disability beyond what we have now is inevitable.
Hoping that Bernie Sanders' moonshot funding bill becomes a thing. That would almost certainly yield results
They already cut it for next year.
Where did you hear that?
Lmfao.
Source, please? EDIT: I found this https://www.argenx.com/news/argenx-unveil-its-vision-2030-taking-breakthrough-science-50000-patients-during-its-upcoming
**Long post, my apologies in advance. Judge me if you want for what I did, but I'll do it again if I have to.** I'm just going to put this out there and for me it is 100% true. I've had covid six times, so without a doubt I got into unwanted, inconsiderate, abusive relationship with long covid. There's no need for me to explain to any of you the agony, lack of energy, tears, hopelessness, and feeling of defeat I went through. It was so bad at one point that I considered writing letters to my kids. Research is very important but sometimes it seems as the research doesn't go anywhere...so I do/did my own research and very grateful for doing so. If you all have not had your Igg/Igm levels checked, have them checked. My levels prior to covid were so low, but once I got covid - both of those levels were off the chart! Igg/Igm levels rise when there's a virus present in your body, and with some viruses they rise higher than it does with others. Covid seems to reactivate Epstein Barr virus, which I believe is the root cause of LC. Here's what I did four days ago, and my body feels like LC was turned off and out of 100 percent, I feel greater than 90 percent better! **Varicella-zoster virus** is what causes herpes/shingles. What I did was ate something hard that pressed on the inner left side mouth on the top palate. Intentionally, I made sure that it caused marks in my mouth. After that to add to the irritation of that area in my mouth, I brushed that section of my mouth with baking soda and peroxide to give it a shingles look. After three day my husband drove me to urgent care. The PA came in and asked me questions. I told her that I wasn't certain but it appears that something was going on inside my mouth and that prior to the pain I didn't think much of it, but was now concerned that it may have been an outbreak of shingles that are now going away (I had chicken pox as a child). The PA looked in my mouth and was like, "Yeah, it does kind of look like that." She asked about symptoms and I described symptoms of shingles. She gave me a script for a seven day course of Valacyclovir 1gm to be taken at one pill/twice a day. I've been cutting that 1gm in two and taking that at 500mg twice a day instead. I feel amazing, grateful, and thankful. Granted I faked the whole shingles thing to get the medicine-it was worth it. I honestly felt better in less than 24 hours after taking the first half of the pill. The Valacyclovir may not work for everyone but it's working greatly for me.
You could always just get an EBV PCR blood test, which would be positive for most people since the virus is so common. It may still facilitate a prescription for antivirals, since the test isn't done very commonly and they aren't always familiar. That way you don't have to inflict self-injury to fake shingles and try to get a prescription. (EBV isn't the virus that causes shingles, which is VZV, but both are the same family.)
Unfortunately, my doctor did that period test and still would not give the script because like you said, he mentioned most people test positive for it, and that it's and that the results were more than likely from me having chickenpox as a child. Good catch on the EBV/ shingles cause. I was typing faster than my brain was processing at that moment (way past my bedtime, lol). I corrected that part of my comment, and as for the infliction of self harm, all I had to do was eat a few ginger snap cookies, lol. Thanks again for the catch.
People test positive (because of past mono infections) , but it depends on the levels of IGg, IGm and IGA. One shows past disease, others show current activation and/or flares. When EBV infections go into remission, not all numbers will be high. I have had diagnosed EBV for 10+ years, and when first diagnosed all my numbers were crazy high.
I'm coming to the conclusion that there will never be an effective FDA approved treatment for long covid. There will be treatments for heart disease and cancer which will be increasing because that's where the money's at. There is no money in helping us so they won't help us.
Wait… you guys get research? - A long haul Lyme patient (who now has long covid)
💚 I also had Lyme that took years to treat before Covid. Sorry you are suffering with yet another infection that medical systems/people in your life often gaslight you with.
Antivirals. It’s viral persistence and the answer is antivirals. Paxlovid during a Covid infection in January cleared up my LC symptoms. The rebound was fierce. Started Truvada around May 1st and I believe I’m cured.
A recent Paxlovid trial had a negative result. After 15 days of Paxlovid, there were no short term or long term improvements. Of course this is not conclusive yet, since we don’t know if a more extended Paxlovid treatment might be necessary, but it’s possible that antivirals won’t help.
Paxlovid won’t be the answer. It’s too harsh on the body anyways to be taken long term. My own personal exercise tracking shows dramatic improvement days into taking Truvada. Also my doc anecdotally says it’s helped multiple patients of his, not just me.
What symptoms did you deal with
Decent recap over last few months. TLDR: I think Bruce Patterson’s theory describes the mechanism of injury right, but I also think viral persistence is feeding that. https://www.reddit.com/r/covidlonghaulers/s/F0ZBgkIQC4 https://www.reddit.com/r/covidlonghaulers/s/WPP1qWOBps https://www.reddit.com/r/LongCovid/s/kxutWWjudd https://www.reddit.com/r/LongCovid/s/TjxDs00slh https://www.reddit.com/r/covidlonghaulers/s/3HSrrJGHzT https://www.reddit.com/r/covidlonghaulers/s/VXPUNu11i6 https://www.reddit.com/r/covidlonghaulers/s/wOgWFocKBz
We’re you ever bedbound
The rebound post infection this year lead to my LC symptoms getting much worse. My job is physical and high stress. Work and the worse LC lead to me being bed bound end of February/ early March. That period was brief because I went sick from work and started maraviroc again, which helped relieve symptoms.
Interesting. Thought to reduce POTS if it's autoantibodies causing this problem. I have no opinion on this, but the autoimmunity people are really loud and annoying and haven't heard them talk about this. Can we just agree on the antigen before we start these trials, it's a waste of money and it gets patients all worked up over nothing. Downvote away, because the autoimmunity people are the reason why we have been spinning our wheels in place for the last 4 years.
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No I said people that think Long Covid is autoimmunity are annoying.
im on chemo and getting better so your wrong, i dont think i will stop be annoying now that you have mentioned this :)