The treatment itself is the most proven treatment for Long COVID. The unfortunate reality is that most doctors have missed that important development in the treatment of long haul. So that’s how you know that most people don’t know what they’re doing regardless of how many years they’ve spent in medical school or treating patients. That’s the raw, unvarnished truth.
The people associated with the clinics may be causing more harm than good. It makes business sense to sell patients 10-40 HBOT sessions at once. However, this is massively inappropriate for patients who worsen on HBOT. Some people seem to experience permanent or long-lasting worsening from HBOT.
You may be better off being your doctor and reading the HBOT primer linked in the paragraph above. It’s a sad state of affairs when some guy on the Internet will give you better advice than the professionals associated with these clinics.
The NIH / NINDS has advanced medical facilities that are unparalled. A good hospital will have a 3 Tesla scanner. A research hospital might have a 7 Tesla scanner. The NIH has a bleeding edge 11.7T scanner, which Avindra Nath and his colleagues used on deceased acute COVID patients.
Nath has treated both post vac and Long COVID patients. Unfortuantely… nothing spectacular came out of some of the best researchers and facilities in the world. In a 2022 conversation between Nath and Takashi Yamamura (Nov 2021), Nath didn’t really have a lot of ideas for treating Long COVID. Early in 2021, he was actively treating post vac patients to better understand what was happening as the NIH/NINDS is supposed to work on bleeding edge developments in medicine.
The political environment changed on Nath and that affected his research. A pre-print by Safavi, Nath et al. claims that the patients that they treated had complete or near-complete improvement after two weeks. Patients seen at the NIH such as Danice Hertz have publicly disputed the claims of recovery on Youtube and on Rumble (Mar 2023).
Nath released a 2023 pre-print with his thoughts on vax injury and how to treat it. It’s not very excited. It cases a case study of a patient who underwent plasmapheresis. However, with the benefit of 20/20 hindsight, we know that the patient is still in really bad shape. Science magazine has this tidbit from the patient’s doctor: the patient “recently returned with worsening symptoms”.
There are some doctors that like prescribing IVIG and are willing to fight insurance companies to help patients get the treatment. However, nobody has really recovered on it so far- here’s some data.
Mayo has a reputation for having some of the best doctors in the world.
From what I remember from anecdotes, patients say that their doctors don’t know much about long haul (or post vac) and aren’t that interested in learning more.
It’s unfortunate that patients can’t simply spray their illness with money and expect to recover. That’s just now how it works when people actually try to get their lives back.
There’s good and bad. These doctors are probably leading the way in terms of recovered patients. It turns out that ivermectin is one of the top drugs that seems to be leading to recoveries (data here). So is hydroxychloroquine (?), but most practitioners don’t know that they should try it.
The bad is that there are some really bad doctors in this system. Because almost all of them don’t take insurance, they have to do things to have a viable business. There are doctors who will gaslight their patients and tell them that it’s a good sign if they are having a negative reaction to treatment- that’s how you know that it’s “working”. You really have to watch out for the doctors who are telling their patients that they have a Herx or detox reaction. While Herx reactions are real, the grifter doctors just blame negative reactions on a Herx without any evidence of an underlying spirochete infection.
The various protocols available are low-quality and not really evidence-based.
Patterson, CovidLongHaulers.com, etc.
The cytokine testing approach didn’t work for ME/CFS and it doesn’t look like it works for Long COVID for vaccine injury. The ‘precision medicine’ is mostly bullshit because some people will be recommended maraviroc even if their cytokine test doesn’t suggest its use. A RCT demonstrated that a different CCR5 antagonist didn’t work for Long COVID.
However, people seem to be recovering on statins.
Ivermectin does seem to help people recover. Bruce Patterson and Eric Osgoode started pooh-poohing ivermectin when the horse dewormer stuff happened in the news, so basically that’s how medicine works. They were using one of the best treatments for long haul and then they stopped using it because of politics. They aren’t good at tracking their patients’ outcomes… it’s a problem.
I’ve criticized microclots in 2022 and I’ll do it again in 2023. HELP apheresis is plain dangerous.
#TeamClots has 2 members (Asad Khan and Harriet Carroll) who are LC and post vac respectively. They are still in bad shape after anticoag therapy. I think Carroll said that she got worse while doing anticoag therapy (but that she would’ve been worse had she not done it).
On the good side, it’s possible that clopidogrel does something. However it may not be as safe as IVM or HCQ, though that remains to be seen.
Treatment modalities are all over the place so it may be hard to generalize. We don’t seem to be seeing that many people recovering from these modalities.
Extended fasting looks like a top treatment right now. However, there aren’t a lot of fasting clinics in the world and not a lot of long haul patients are going to the ones that do exist.
While Chronic Lyme is a real condition and people do get their lives back after treating it, I suspect that it is not a very common co-morbidity in long haulers. Antibiotics were one of the worse treatments surveyed.
It seems to be the case that charlatan doctors misdiagnose their patient with chronic Lyme and tell them to ignore bad reactions because they’re a “Herx” reaction. Because chronic Lyme is extremely difficult to test for, it can be hard to tell if you have Lyme or not. So, it may be hard to tell if your LLMD is a charlatan (unless they diagnose you definitely with very little testing and evidence).
These are fairly popular modalities that patients don’t talk about much. This suggests that people aren’t recovering on these modalities, but I haven’t yet crunched the data.
This is actually a risky treatment (!!), which you wouldn’t expect at all. See the post below:
However, some people may be recovering from this. It’s hard to say.
While some MCAS treatments can offer quick, safe improvement in symptoms, they don’t seem to help people recover.
I don’t have great data on these specialists but they exist.
There are a wide range of treatments… some people try ivermectin. Others try their own urine or whatever. The really adventurous ME/CFS patients have been getting GS-44 manufactured for them. (It’s the remdesivir metabolite that was never approved in humans or cats.)
Kyle Warner and myself are two people who largely improved from the DIY route. There are probably also people who got themselves into a world of trouble. Agy_lena on Twitter reports long-lasting worsening from HBOT, whereas Kyle Warner benefitted from HBOT and came back to do it again after a relapse of some of his symptoms.
I did not know what I was doing when I was recovering from the DIY route. I hadn’t yet figured out Patterson’s craziness so I tried statins for longer than I should have. Kyle Warner probably didn’t really know what he was doing either (e.g. it was back when there wasn’t much information about vax injury, no HBOT RCT, etc.).
Do-it-yourself trial and error is probably one of the better modalities right now. However, there are some real shortcomings. Patients would benefit from a good pharmacist but patients haven’t really figured that part out yet. Secondly, the patient-doctor has to really know what they’re doing. And lastly, there are a lot of hoops to jump through to get drugs without a prescription (though it varies from country to country).
I actually have a deep mistrust of medical professionals because I’ve seen too many of them make mistakes or intentionally harm/endanger patients. Some day I’ll be able to tell you about all of the grifters and charlatans in the alternative healthcare space (many of them aren’t part of the medical freedom movement). It’s not just Simone Gold.
For now, I write posts like this one so that you can get a better idea of what you’re getting yourself into.
I don’t know where you can get great medical treatment other than doing it yourself, which is sketchy. If you go with a doctor, the medical freedom movement doctors are a good place to start. Just don’t drunk their Kool-Aid (don’t get sucked into their craziness if they’re crazy).