Treatments to try first (August 2022 edition)

I try to keep this list evidence-based. I have a half-hour video that explains the latest data on Odysee, along with the presentation slides for that video. The video takes 15 minutes to watch if you play it at double speed.

For those of you into “natural” treatments:

  • Natural treatments are marked with a :leafy_green:
  • Things made by bacteria or yeast are marked with a :microbe:

First line treatments

Most of these treatments are fairly safe, although there are some exceptions that I will try to point out. Everything on this list will work for many people but not for others. If it doesn’t work out for you, you should probably move onto something else.

Diet :leafy_green:

Gluten-free and low histamine are two solid diet choices. They have the most evidence behind them so far.

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Those with food intolerances respond the best to diet, probably because they are avoiding their food triggers. One way to check for food intolerances is to eat a low-variety elimination-like diet and to keep track of what you eat versus what your symptoms are.

Gluten free :leafy_green:

The gluten-free diet was one of the most popular. The easiest way to do gluten-free in my opinion is to eat lots of meat and fruit. Or, eat only meat and fruit. That minimizes the amount of reading that you have to do while grocery shopping. You’ll want to eat fattier cuts of meat like bacon, blade steak, rib eye, short ribs, etc.

Nearly all food products with the words “gluten free” on the packaging are gluten-free. However, a few of them contain trace amounts of gluten, which some people are sensitive to. The packaging may state that the food was prepared on machinery that also touches gluten.

Low histamine diet :leafy_green:

See this page for more information, food lists, etc.

Some people don’t like eating a low histamine diet because it can be inconvenient and highly restrictive. However, it’s a solid diet choice and is worth trying first if eating gluten free is not your cup of tea.

Carnivore diet?! :leafy_green:

The carnivore diet has some safety issues if you are on medication. See this page. The diet can reverse diabetes, which will cause problems if you are taking medication to lower blood sugar. It is unclear if the same safety issues apply to eating only meat and fruit.

Because the carnivore diet can be more complicated to implement, I would probably stick to trying other diets first.

Plant-based diets :leafy_green:

The data suggests that these diets are slightly worse than gluten-free and low histamine.

Vegan diets can be very difficult to get into. You MUST do your homework on them or else you will starve in the beginning. You can also develop long-term health problems on vegan diets.

It will be much easier if you go with something less strict. You can add a small amount of animal products (e.g. cheese, eggs), mussels/bivalves, or seafood into your diet. Mussels and bivalves are considered by some to be more ethical than eating sea animals.

Pacing strategies (e.g. spoon theory), avoiding over-exertion :leafy_green:

Many people report that physical as well as mental exertion can cause their symptoms to flare. Get sufficient rest, take breaks, and don’t push yourself past your safe limits. Your limits may change over time.

Magnesium :leafy_green:

Magnesium has been the highest-rated supplement in the Treatment Outcomes survey.

Probiotics and prebiotics :leafy_green: :microbe:

Also higher up in the rankings like magnesium.

DAO enzymes :microbe:

Some people find that they help before a meal.

Anti-histamines

Some information here. The anti-histamines sold over-the-counter tend to be safe*. If a H1 blocker does not work for you, it can be worth trying a different one because there is a good chance that you will respond to the other one.

READ THE PACKAGING. There is important safety information there. Some of them can make you drowsy, so you should not drive or operate heavy machinery.

*Benadryl may have some side effects, even though it is often sold over-the-counter (as in, you don’t need a prescription).

Ivermectin :microbe:

Guide here

Fasting :leafy_green:

Here’s the data:

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One-meal-a-day and intermittent fasting are solid choices. The more extreme fasting regimes might have better results, but that’s not clear right now.

Low dose naltrexone

This is a prescription drug with some side effects.

To find a doctor who will prescribe, see the second tab in this Google sheet. You’ll need to find a doctor who is open-minded about prescribing LDN; hopefully they will have knowledge about the drug and where to get it compounded. FLCCC doctors are one place to look.

If you have difficulty accessing prescription drugs… there are things that you can do if you educate yourself and accept the risks of being your own doctor and ‘prescribing’ drugs to yourself.

HBOT above 1.5 ATA

(:leafy_green: if you consider oxygen and pressure to be natural)

This is the top Long COVID treatment at the moment. However, there seems to be a small risk of lasting worsening of symptoms.

While HBOT is low cost in the United Kingdom, it is fairly expensive elsewhere. Lower pressure HBOT from ‘soft shell’ chambers is cheaper. But, it is less effective for some reason. You can buy a chamber for several thousand dollars used. Some manufacturers will buy back chambers at half cost, while some clinics will rent out chambers.

HBOT resources:

Second-line treatments

Hydroxychloroquine / Plaquenil

Riskier than ivermectin, but seems to work slightly better for some reason.

Statins, red yeast rice :leafy_green:

For the natural version, buy Nature’s Aid red yeast rice. Each pill contains 10mg of the molecule lovastatin, which is the same molecule as the prescription drug lovastatin. Eco Natural Products will ship internationally to countries other than the UK. While you can easily buy this without a prescription, please treat it as a prescription drug with possible side effects. See a doctor immediately if your urine/pee looks like Coca Cola (learn about rhabdomyolysis).

See the LDN section above about finding a doctor.

Black seed oil :leafy_green:

Treamtents from the FLCCC protocol

  • Melatonin. :leafy_green: because your body naturally produces this.
  • Omega-3 fatty acids :leafy_green: *natural, but usually not vegan

Dangerous treatments and tests to be careful of

  • MRI with gadolinium contrast dye. MRI without any contrast or dye is fine. The benefit of the contrast dye is not well-known at this point while the risks are real. See GadoliniumToxicity.com; they have support groups just like long haulers.
  • :question: Lumbar puncture :question: - If you have a connective disorder, your CSF fluid may leak and be hard to patch up. The risk/benefit isn’t well understood at the moment.
  • Too many CT scans. A few are fine, too many unnecessary scans put you at some risk of cancer.

Treatments:

  • COVID vaccines - The spike injured seem to be re-injured at very high rates from re-vaccination (over 60%).
  • Flu vaccine - Less is known about other vaccines in the vax injured. People with Long COVID report a low rate of worsening after the flu vaccine. 5/35 (14%) in a Body Politic poll reported worsening, with 3/35 reporting significant worsening. None reported improvement. For ME/CFS patients, the Bateman Horne Center discusses the risks of the flu vaccine in people with ME/CFS.
  • Exercise - Some long haulers get screwed up by this. You can use pacing strategies (e.g. spoon theory) to avoid post-exertional malaise. Pacing can let you optimize your limits a little more. At the end of the day, don’t over-exert yourself.
  • SSRIs and many psychiatric drugs - can lead to horrible withdrawal effects and suicide.
  • Ativan, benzodiazepenes - can lead to horrible withdrawal effects and suicide. However, it is possible that their benefits outweigh their risks.
  • ’Flox’ antibiotics - Fluoroquinolone antibiotics with ‘flox’ in their name, e.g. ciprofloxacin (Cipro), can have devastating side effects. Those injured by these antibiotics (floxies) have their own support groups. As safer alternatives exist, flox antibiotics can be easily avoided.
  • Botulinum toxin (e.g. Botox, Dysport) - This toxin damages nerves and can spread well beyond where it is supposed to stay. While the toxin can cause dysautonomia by itself, it is unclear if it synergizes with dysautonomia from vaccine injury. Support groups exist for those harmed by ‘iatrogenic botulism’.
  • Breast implants, joint replacements, surgical mesh, pacemakers - These can get infected and lead to chronic illness. The last three items were never designed to be taken out of your body. That is a problem if they get infected.

Remember to get informed consent! Doctors often will not tell you about what can go wrong with the tests and treatments listed in this section. Many of them simply don’t know, or (even worse) they don’t want to know. YOU need to be responsible for your own informed consent.

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