Treatments to try first (June 2022 edition)

I’ll try to keep this list evidence-based, although the evidence base is mostly support group polls and React19 surveys.

For those of you into “natural” treatments:

  • Natural treatments are marked with a :leafy_green:
  • Things made by bacteria or yeast is 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 line seems to work for some people but not others. If it doesn’t work out for you, you should probably move onto something else.

Black seed oil :leafy_green:

Ivermectin :microbe:

Guide here

Diet

All of the diets on a ‘risk factors’ survey (to be published soon) were reported to have good effects. 6 of them are shown below:

It’s unclear why every diet was rated favourably. However, we do know that diet works well for people who react to food.

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.

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.

Low histamine diets are another option and are very popular among long haulers. See this page for more information.

Plant-based diets :leafy_green:

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. I personally would not recommend them.

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.

Anti-histamines

Some information here. The anti-histamines sold over-the-counter tend to be safe*. You may need to try different H1 and H2 blockers until you find one that works for you.

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).

DAO enzymes :microbe:

Some people find that they help before a meal.

Magnesium and vitamin C :leafy_green:

I don’t really know if these work or not, but they were standouts in the Persistent Symptoms Survey. Interim results from the mental health survey suggest that magnesium may have a beneficial effect for some reason.

First line 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
  • Probiotics/prebiotics. Fermented vegetable foods (natto, kimchi, etc.) are prebiotics. :leafy_green:
  • Intermittent daily fasting :leafy_green:
  • Low dose naltexone. This is a prescription drug with some side effects.
  • Aspirin
  • Vitamin D and vitamin K2 :leafy_green:
  • Quercetin :leafy_green:

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 put you at unnecessary risk of cancer.

Treatments:

  • COVID vaccines - The vax 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.
  • ’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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