List of ME/CFS Recovery and Improvement Stories

[Hip]

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.

Be happy to. Would you have a link to a post where you have written up your protocol in detail (drugs and supplements used, doses, length of time on the protocol before the improvements manifested, etc)? Then I can add you next time I update.

 

[PatJ]

maybe ME/CFS patients have a stagnation in their glymphatic system, preventing waste products being properly cleared from the brain.

I wonder if this is why 1) some of us have permanent swollen lymph nodes in the neck and 2) why some of us feel worse, even "poisoned", after a long or deep sleep -- maybe the waste from the brain is finally being cleared but there's so much that it causes us to feel worse.

 

[Hipsman]

if you start feeling worse, you may want to stop for a short while, just to check that you are not becoming permanently worse.

I think this is really good advice, I will be using it from now onward whenever using medications that are known to make some patients permanently worse or when using medications that are not well researched on side effects. Unless of course the medication is known to stop working after short break in dosing, e.g: Oxymatrine.


I tried real isoprinosine from a local pharmacy. I decided to try 1000mg low dose for start, but stopped the next day becouse of side effects:

10.16 - start, 500mg mourning and evening
10.17 - 500mg mourning. At midday: feel more brain fog and a bit of headache. Increased wired but tired. A bit less energy, less energized. (worsening of about 1/6 of a level on 3-level ME/CFS scale)
10.18 - side effects not changed.
10.19 - side effects not changed.
10.21 - at midday side effects vanished, back to baseline, maybe even slightly better.

Not sure if ~72 hours of side effect after the last dose are normal side effects or me/cfs worsening that just didn't "manifest" enough to become permanent...

I'm thinking of trying 250mg mourning and evening starting tomorrow to see if side effects come back or not...

 

[BananaMango99]

Great thread and hopefully it can start a bit of a systematic treatment for doctors. Go through each one and rule them out. At the moment doctors seem to have a preference for a particular treatment and stick to it.

Based on those numbers for example, in surprised valcyte and valtrex aren't first points of call. But I'd never heard of them until now

 

[Hipsman]

Not sure if ~72 hours of side effect after the last dose are normal side effects or me/cfs worsening that just didn't "manifest" enough to become permanent...

I'm thinking of trying 250mg mourning and evening starting tomorrow to see if side effects come back or not...

I tried isoprinosine 250mg, shortly after the first dose side effects returned, they were milder then the first time(probably becouse of smaller dose), but lasted longer.

10.24 - 250mg mourning. Feel worse. A bit of headache and less energy
10.25 - side effects not changed
10.26 - side effects not changed
10.27 - side effects not changed
10.28 AM 1:00 - stomach problems (probably something I ate or infection), feel worse.
11.04 - about at baseline, maybe a bit worse.

Unfortunately after the third day I had stomach problems witch made me feel worse, so I don't know at witch point isoprinosine side effects ended, but at least they ended and I know isoprinosine makes me worse, end of trial...

Few days later I tried oral interferon alpha 4000 ME x4 daily. 4000 ME for convenience, becouse 1 drop of interferon alpha solution I bought contained 4000 ME). On the second day I felt worse after taking it, will trial 400ME in near future, but now I'll take a week or two off from trialing stuff.

 

[leokitten]

Awesome compendium @Hip

Regarding my entry, found very difficult for body to maintain therapeutic ketosis long-term, diet didn’t prevent crashes when trying to exert to live regular life, only extended exertion capacity by a few days before crash, back to bedbound now.

 

[leokitten]

Not sure how long you wait for user efficacy before adding to thread but maybe a section on Abilify (aripiprazole) and combos?

 

[Hip]

Not sure how long you wait for user efficacy before adding to thread but maybe a section on Abilify (aripiprazole) and combos?

I've been accumulating a few more recovery/improvement stories that people have sent me for inclusion in this page, and that includes several Abilify stories. I will be adding these new stories shortly.

The good thing about this thread is that it has prompted people to mention recovery/improvement stories that they know about, so the number of stories keeps growing.

 

[Hipsman]

Tenofovir (Viread) — Antiviral Drug

Tenofovir is an antiviral drug normally used for hepatitis B virus or HIV. When used to treat ME/CFS, Dr John Chia reports it works for almost 1 in 3 ME/CFS patients. Refs: 1 2

I looked around local pharmacies for Viread, the avarage price is 50$ per 30 tablets of 300mg tenofovir disoproxil fumarate, witch is equivalent to 245mg tenofovir disoproxil. Manufacturer is "Gilead Sciences Ireland UC."

Seems like insanely good price compared to online prices (or maybe I didn't find good deals?)!

 

[Hip]

Seems like insanely good price compared to online prices (or maybe I didn't find good deals?)!

It's a pretty good price, but you will find similar prices at some of the pharmacies listed in this thread, such as here, here and here.

 

[Hipsman]

Antiretrovirals (Tenofovir, Raltegravir, AZT)

These HIV antivirals are immunomodulatory, and can inhibit human endogenous retroviruses (HERVs). Ref: 1 HERV-K activity has been linked to moderate (but not severe) ME/CFS. Ref: 1

That's interesting, I assume tenofovir alone can inhibit HERV-K?

 

[Hip]

I assume tenofovir alone can inhibit HERV-K?

I would guess so: the study found that all reverse transcriptase (RT) inhibitors could inhibit HERV-K, and tenofovir is listed as an RT inhibitor.

 

[Donsboig]

A couple months ago I put together some information about the one thing I think has made a big difference for me: diagnosis of proprioception dysfunction and treatment with Active Prism lenses (NB not the same as the prism glasses that let you read while laying down!)

Write up is here

Adding it here in case it can help someone. I suspect it will only apply to a small subset

 

[Donsboig]

As for the severity scale, I would say I was closer to severe before the glasses, and am now closer to moderate.

And of course I cannot be certain that it is a result of the glasses

 

[Judee]

@Hip, is there anything else that works for HHV-6 that you know of? Even the generic valcyte at $7 per day is too much for me right now.

 

[Hip]

@Hip, is there anything else that works for HHV-6 that you know of? Even the generic valcyte at $7 per day is too much for me right now.

You can look into Nexavir or artesunate.

 

[Muon]

Why isn't this a pinned thread?

 

[Mary]

Why isn't this a pinned thread?

@Muon - I sent you a PM about this.

ETA - It's now pinned - thanks for the suggestion!

 

[Mary]

@Hip, is there anything else that works for HHV-6 that you know of? Even the generic valcyte at $7 per day is too much for me right now.

@Judee - you might try andrographis. It has shown efficacy against EBV (Inhibition of the epstein-barr virus lytic cycle by andrographolide - PubMed (nih.gov) ) I believe it helped raise my NK cell function. Also several years ago I had very high titres of HHV-6 and don't any more. I don't have "proof" but believe that andrographis played a role in this. This is what I've taken for several years: AmazonSmile: Planetary Herbals Full Spectrum Andrographis 400mg Support Healthy Digestive, Cardiovascular & Unrinary Systems - Support For Healthy Liver & Immune Function - Ayurvedic Herb - 120 Tablets: Health & Personal Care

 

[Judee]

It has shown efficacy against EBV (Inhibition of the epstein-barr virus lytic cycle by andrographolide - PubMed (nih.gov) ) I believe it helped raise my NK cell function. Also several years ago I had very high titres of HHV-6 and don't any more.

Hey, good.

Thanks, @Mary, I'm going to have to try that now along with the glycine you mentioned in another post.

I did try andrographis before and it upset my stomach but maybe if I take a lower dose and make sure to take it with food.

How long do you think you were on it before it changed your HHV-6 levels?