Summary:
Recovery exists along a spectrum, with about 7% being mostly recovered and enjoying a high quality of life. Let me shout it from the rooftops: people are recovering! This might be hard to see when the scientific literature and the support groups are full of miracle cures that turn out to be
. But if you look past the people making stuff up… there are people who are able to work full-time again without accommodations. I’m one of those people.
Most people haven’t tried the top treatments. Hopefully that 7% number goes up in the future as we learn more about treatments.
Top treatments
HBOT is the most proven treatment. While it may not necessarily be the best treatment, it has the best evidence to support its use. See this post for a HBOT primer.
Survey data on top treatments here:
Black seed oil (from nigella sativa) should hopefully see more use. It’s a supermarket food so it’s incredibly safe in healthy people… less so in chronic illness patients.
If you want to buy it online (not all ethnic supermarkets stock it), see the iHerb shopping list if you’re lazy and just want to buy everything from iHerb.
From the slides in the video description of Patient Experiences Protocol (Dec 2022)
The other top treatments are:
- HBOT
- IVM - see the protocol video for some info on it. The slides are in the video description and will link to a page with info on how to access ivermectin.
- Statins - again, see the protocol video
- Extended fasting for more than 2 days
- HCQ - primer here
The double edged sword effect
The treatments that work will also make a few people worse. This is happening and we need to talk about it more. People having very negative experiences is something that happens a lot… and it looks like patients are catching on much faster than doctors. (Other than the doctors who try to gaslight you into thinking that negative reactions are a Herx or detox.)
What we can do about this:
- Start with low doses. Treatment seems to exhibit a dose-dependent effect… with the lower dosages of nigella sativa having no effect on recovery and the highest (normal) doses acting like a double edged sword.
- Discontinue treatment early if symptoms are going the wrong way.
This is the more prudent path although the evidence here is not definitive.
Response rates are low
Unfortunately, this condition is not easy to treat. Most people won’t recover on the top treatments. There aren’t great answers for these patients right now because you have to venture out into treatments that very few people have tried so there’s very little data.
However, for some ideas, see these resources:
Symptom relief versus treating the root cause
The treatments that can lead to dramatic recovery (‘deal with the root cause’) come with risk.
However, there are some other treatments that can quickly relieve your symptoms with very little risk.
- Certain diets can help you deal with food intolerances. Here’s information on eating gluten-free and low histamine.
- Pacing strategies
They don’t seem to really help people recover. There’s also:
- Safe, first-line treatments for POTS
- Magnesium
- DAO enzymes?
- The safer antihistamines (*comes with relatively higher risk)
Data exists on many treatments
Because I surveyed hundreds of patients, there’s data on many uncommon treatments. To find that data, see this post which explains how to navigate the data dump page at LongHaulWiki.com/treatment-outcomes/.
So for example, you may want to prioritize high ATA HBOT over other expensive treatments like ozone, EBOO, IVIG, and PLEX.
People who make stuff up, unreliable data, miracle cures
Unfortunately, there is a lot of unreliable data and unreliable information to sift through.
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There is an ‘everything works’ problem in the scientific literature- even if it’s peer reviewed. If everything in the literature was true, then there would currently be at least 9 highly effective treatments for Long COVID. But that isn’t reality because the condition is hard to treat.
- A similar problem exists in the support groups. See the ‘everything works’ post linked earlier.
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The microclots stuff is really questionable science. I know that a lot of doctors, patients, the Ethereum crypto guy, and advocacy groups have gotten behind this with millions of dollars but I’ll just say it: the emperor has no clothes. People were saying it in 2022 and people are still saying it in 2023.
- Type 2 diabetes patients have microclots without Long COVID symptoms.
- Listen to Caroline Dalton presenting along Resia Pretorius (Pretorius and Kell were the researchers who popularized microclots).
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Avindra Nath of the NIH has been accused of fabricating patient outcomes.
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Watch out for multi-level marketing schemes because they attract a lot of people who are willing to exploit patients for a few bucks. The iTeraCare frequency wand is dying down in the post vax circles (e.g. the major MLM leaders turned against the product for being unsafe) but here’s a page on the various shenanigans that went on. The censorship was disgusting and very few people had the courage to do the right thing.
There’s a lot of bad behaviour coming from researchers, doctors, patients, and ‘advocacy’ groups. You can get your medical advice from those horrible people who are all too willing to throw sick people under the bus. Some of them will waste your time and money on ridiculous experimental treatments.
Or you can just do what I did to get your life back.
¯\_(ツ)_/¯
You deserve to heal so don’t waste your time with questionable medical information.