List of ME/CFS Recovery and Improvement Stories

[sometexan84]

@Hip You should get going on adding those Valtrex success stories! Any way I can help?

79 of the 106 (74.5%) Dr Lerner patients improved dramatically

Sucks that Dr. Lerner's website is now closed. Had to use the Wayback Machine to access his old studies.

 

[crowtor]

How to I report things that worked for me? Here? Or should I make a separate thread?
If here's is enough then:

For brain fog I supplement with 1l/m of oxygen from a concentrator (during mental activities)

For sleep I was able to move from being bed bound(crawling to toilet) to being housebound by using a Resmed Aircurve 10 VAuto.

For PEM I don't crash after a physical activity if I take 20 pills(100mg) with Kaneka's Ubiquinol (about 2000mg)

 

[Hip]

You should get going on adding those Valtrex success stories!

I've now updated the first post of this thread with some of the recovery and improvements stories suggested by members in this thread. And I also found some more stories myself which I have added.

 

[sometexan84]

I've now updated the first post of this thread with some of the recovery and improvements stories suggested by members in this thread. And I also found some more stories myself which I have added.

Awesome!

Aside from the new Valtrex/Valcyte, what other new additions are included?

 

[Hip]

Aside from the new Valtrex/Valcyte, what other new additions are included?

These are the new sections added (or new stories added to existing sections):

Valtrex (Valaciclovir) — Antiviral Drug
Valtrex (Valaciclovir) Plus Valcyte (Valganciclovir) Together
Tenofovir (Viread) — Antiviral Drug
Low-Level Laser Therapy / LED Light Therapy
Surgical Treatment of a Jawbone Cavitation Infection
Surgery for Craniocervical Instability
Mild Hyperbaric Oxygen Therapy (mHBOT)
Pridgen Protocol (Famvir + Celecoxib)
Yoga
Moving to Hot, Humid and Sunny Costa Rica
Mestinon (Pyridostigmine)
Cellfood (Deuterium Sulfate)

 

[marlunette]

I wanted to chime in with my remission story - I went from moderate to quite mild with mold avoidance. I have since gone from quite mild to remission with B12 injections and supplementing with B vitamins and various micronutrients.

I have still have MCAS and I still get ME/CFS symptoms from exposures to mold. My exercise induced asthma went into remission after 25 years, which was a nice bonus since I can exercise now.

 

[Hip]

I wanted to chime in with my remission story - I went from moderate to quite mild with mold avoidance. I have since gone from quite mild to remission with B12 injections and supplementing with B vitamins and various micronutrients.

Interesting. Have you posted your recovery story somewhere in full detail? Do you think you are an ME/CFS patient, or more of a CIRS (chronic inflammatory response syndrome) patient? It's not clear what the difference is between these, and even whether they are separate diseases or the same disease. Often mold illness patients come out positive on the visual contrast sensitivity test (VCS), which may be one way of distinguishing these illnesses.

 

[Gennadiy]

This is great - thanks for putting it together. I seem to have cured my extreme severe light and noise sensitivity but I wish I could pin down what did it as I’d love to help others with the same issue. I can tolerate bright sunlight without glasses now, whereas for years I lived in complete darkness and couldn’t tolerate candlelight.

Hello, I am writing to you from Russia, I have a strong sensitivity to noise (I cannot be in the city) and a small sensitivity to light. Tell us how you managed to cure sensitivity.

 

[Hip]

I have a strong sensitivity to noise (I cannot be in the city) and a small sensitivity to light. Tell us how you managed to cure sensitivity.

Personally I found very low-dose amisulpride reduced my sound sensitivity quite a bit. You can search the Internet for hyperacusis, which is the medical name for sound sensitivity. But there does not seem to be much in terms of treatments.

 

[Aspie Lymie]

Could it be then, that ME/CFS is not a single illness. Rather, could ME/CFS encompass a number of very similar but different illnesses that match the current diagnostic criteria?

It could be. Same as cancer : There is liver cancer, kidney cancer, skin cancer.... All treated with different drugs, but they are all cancers.

 

[crowtor]

It could be. Same as cancer : There is liver cancer, kidney cancer, skin cancer.... All treated with different drugs, but they are all cancers.

I think that it's more of a 'systemic reaction' that your body induces in response to a 'perceived' disease state. For example if you catch a virus, the cells around it signal other cells to produce less atm around it to halt the spread. At some point this cascades into a systemic state.

 

[Hipsman]

Low-Dose Oral Interferon Alpha

Interferon alpha is a potent immunomodulator that activates the intracellular immune response. You can buy interferon alpha suppositories or nasal sprays cheaply from Russian online pharmacies (see this post), and these may be adapted for oral use.

Edit: just realized I can get Grippferon witch gives 500ME per dose (per drop), so I will just get that instead of doing what I wrote below. Not sure if I need to dilute it and what type of water should I use for that.

Okay, lets see if I got this right...
1) Buy interferon alpha-2b (this one is what rusisan me/cfs community recommends, its in powder form)
There is also 250.000 units per ampules form, witch I'm going to use for my calculations...

2) Dilute it in distilled water. According to google 1 drop is 0.05ml, so if I want 1 drop to contain 100 units:
1ml = 20 drops;
20*100 = 2000 units per ml;
250.000 / 2000 = 125 (ml water)

So I need to dilute 1 ampule in 125ml distilled water. I assume after it's diluted it can be stored in fridge for around 30 days, similar to DIY Low-dose Naltrexone?

Or is it better to dilute in bacteriostatic water used for peptides?

 

[Hip]

Or is it better to dilute in bacteriostatic water used for peptides?

You are not injecting it, but are taking it orally, so distilled water for dilution would be fine. Bacteriostatic water is only used when you are reconstituting proteins or peptides for injection.


In my case, to administer low-dose oral interferon, I used Russian interferon suppositories (you can get 500,000 IU suppositories), and melted these in cooking oil at 40ºC. Then I kept the cooking oil in the fridge. These suppositories are made from a soft waxy material which melts at body temp, so they will melt in cooking oil at just above body temp.

Some years ago I bought a box of 5 x suppositories of 500,000 IU for $11 (Laferobion brand, which is a cheap brand).

This post lists various suppliers of Russian interferon, including interferon in suppository form.

 

[Gennadiy]

Treatment of CFS associated with neuroinflammation and sleep has long been patented in Russia, but exists only in a clinic in Novosibirsk http://schizophrenia8.ru/article/view/id/9

treatment is very expensive 1 month 4 000$

 

[Hip]

Treatment of CFS associated with neuroinflammation and sleep has long been patented in Russia, but exists only in a clinic in Novosibirsk http://schizophrenia8.ru/article/view/id/9

This is very interesting, @Gennadiy!

Thanks for posting that link to Dr Voronov Alexander Ivanovich's work, centering on the fact that the brain's glymphatic system, which clears waste from the brain, only functions during slow-wave sleep (also called deep sleep).

Abnormalities have been found in the slow-wave sleep of ME/CFS patients, so maybe ME/CFS patients have a stagnation in their glymphatic system, preventing waste products being properly cleared from the brain.

Quoting your link:

The glymphatic system works as follows: during wakefulness, glial cells tightly adjoin the axons and bodies of neurons, entwine the smallest capillaries, leaving a very small space. The system practically doesn't work.

In deep physiological sleep, gliosis cells contract in a friendly wave-like manner. They shrink by more than half of their volume. The space between the compressed glia and neurons is significantly increased (by 18% - 20%). Space is freed up for the cerebrospinal fluid, which intensively flows through the brain tissue.

It is during deep, slow-wave sleep (3 and 4 sleep phases) that the cerebrospinal fluid removes metabolic products into the deep lymph nodes of the neck. The glymphatic system is almost 10 times more active during sleep. This is normal.

I am going to look into this more, and start a new thread on glymphatic system and slow-wave sleep.



EDIT: Just found that Dr Peter Wostyn has already proposed a glymphatic dysfunction hypothesis of ME/CFS.

 

[Cipher]

@Hip Here are some recovery/improvement stories I've found:

Helminthic Therapy
Nutcracker phenomenon surgery (under the "ME/CFS & dysautonomic comorbidities" header)
Amantadine
LDN (under the "My own perspective" header)
LDN #2

Other

 

[Hip]

Here are some recovery/improvement stories I've found:

Thanks Cipher, I will add those to the list soon.

 

[Hipsman]

Inosine + DMAE = Home-Made Imunovir

According to a ME/CFS patient blog article (now deleted), mixing inosine and DMAE together creates what is equivalent to the antiviral drug Imunovir (isoprinosine).

• ME/CFS patient (Doug) — with major mold exposure-induced illness was more-or-less cured by inosine 2000 mg daily plus DMAE 700 mg, as well as other supplements. See also here. Doug tried inosine on its own for some months, but it was not until he added DMAE to the inosine that he obtained a large increase in health.

Doug seems to be using Inosine/DMAE ration the other way around... or I'm missing something...
From wiki:

a combination of inosine and dimepranol acedoben (a salt of acetamidobenzoic acid and dimethylaminoisopropanol) in a ratio of 1 to 3

Also, from that blog article thread:

For a dosage of 3000mg=3g of isoprinosine a day we would need

0.27 * 3000mg of inosine and 0.73*3000mg of DMAE bitartrate
= 810mg of inosine and 2190mg of DMAE bitartrate = 810mg of DMAE

 

[Hip]

Doug seems to be using Inosine/DMAE ration the other way around

Yes, I think you are right, it should be 3 parts DMAE mixed with 1 part inosine.



The Imunovir patent says:

The mole ratio of aminoalcohol to inosine can vary from 1:1 up to 10:1. The preferred ratio is 3:1 (aminoalcohol to inosine)

Note that these are molar ratios, not mass ratios.

1 mole of inosine weighs 268.2 grams, and 1 mole of DMAE weighs 89.1 grams.

So for a DMAE to inosine molar ratio of 3, the mass ratio of DMAE to inosine will be (3 * 89.1) / 268.2 = 1

So I think to mimic Imunovir, you might want to take equal weights of DMAE and inosine, for example, 1000 mg of DMAE plus 1000 mg of inosine.

Though Doug had great success with inosine 2000 mg plus DMAE 700 mg daily. So maybe the ratio is not that important. Even the patent provides a range of possible ratios.



Note that I've seen reports on this forum of Imunovir making ME/CFS patients worse, and in some cases they remained permanently worse even after stopping. See this thread and this thread.

So if trying Imunovir, or this home-made version of Imunovir consisting of inosine plus DMAE, if you start feeling worse, you may want to stop for a short while, just to check that you are not becoming permanently worse.

 

[unicorn7]

Can you add me? I recovered from moderate to mild two times from the meirleir protocol. Combination of antibiotics for Sibo, LDN, b12, gammanorm (scIg), mesalazine. Strict pacing was also part of it.