List of ME/CFS Recovery and Improvement Stories

[godlovesatrier]

I also started a thread here with an overview of high dose thiamine research - found a great article on Eon Nutrition that breaks it all down:

https://forums.phoenixrising.me/threads/high-dose-thiamine-article-on-eonnutrition.83706/

 

[Wishful]

Did you notice relaxation upon taking B1 that then stopped after a couple of days?

It was too long ago for me to remember, but I think there was no particular relaxation; it was probably just a bit of 'feeling better'. I do remember thinking 'Hey, I found something that works! ', followed by 'It stopped working. ' a couple of days later.

 

[sb4]

I do remember thinking 'Hey, I found something that works! ', followed by 'It stopped working. ' a couple of days later.

I did the exact same

 

[Pearshaped]

Very interesting. I took 150mg -300mg of Benfotiamine for about two or three months in 2018.
I didnt feel calmer but cognitionwise it seemed to do something for me. Then suddenly I couldnt tolerate it anymore -and still cant tolerate even the tyniest dose to this day. 🤷🏻‍♀️

 

[splusholia]

Benfotiamine helped me. I take 750mg daily. It helped when I was very severe (unable to speak and needing care).

 

[Cipher]

If anyone knows of any other recovery or improvement stories that could be included in this thread, please post. That way we can build up a repository of interesting treatments.

@Pyrrhus's interesting experience with NAC:

You're not alone. A lot of people have pretty hellish start-up effects on N-acetyl-cysteine or glutathione. For me, it mostly involved muscle weakness, air hunger, insomnia, and delayed constipation followed by diarrhea. Other symptoms included brain fog, night sweats, and aches.

I generally start at a low dose, and only raise the dose slowly. ("start low and go slow")

I started with a single 500mg dose of N-acetyl-cysteine on a Monday. That was all I took for the first week.

By the following Monday, the effects from the first dose wore off, so I took another 500mg dose, and then another dose on that Friday. So I took 2 doses in the second week.

The third week I took three doses, on Monday, Wednesday, and Friday. The fourth week I took four doses, etc.

By the 8th week, I was taking 500mg N-acetyl-cysteine every day.

But this was a pretty hellish eight weeks, and I didn't start to feel the positive effects of the increased glutathione until week 12.

After week 12, though, I had a clear improvement in most of my symptoms. In fact, boosting my glutathione is one of the greatest long-lasting improvements I have had, reducing all of my core ME symptoms noticeably.

Hope this answers your questions.

Before taking B vitamins and NAC, I was moderately severe.

After B vitamins and NAC, just moderate.

May not sound like much of an improvement, but I can objectively do much more than I could do before.

 

[Cipher]

Another suggestion; Prof. Gottfries use of Staphylococcus toxoid vaccine.

 

[Hip]

@Pyrrhus interesting experience with NAC:

Thanks. I guess that might come under a methylation protocol / boosting glutathione section.

Another suggestion; Prof. Gottfries use of the Staphylococcus toxoid vaccine.

Good idea. I forgot about the Staphylococcus vaccine treatment when I compiled the recovery/improvement stories on this thread.

I will add these stories soon, when I next update the thread with stories that people are sending me.

 

[junkcrap50]

@Hip, have you considered making a thread of stories of treatments that have cause permanent harm or long term regression on the CFS scale? I'd understand it be kind of hard because every little thing commonly cause a crash for many. But maybe limiting to long term regression where a person has not been able to recover from a particular treatment could make the list more manageable/useful. Could help others from making a similar mistake.

 

[Hip]

@Hip, have you considered making a thread of stories of treatments that have cause permanent harm or long term regression on the CFS scale? I

One project I have had in mind for some time is a comprehensive survey (set up using Google Forms) which asks ME/CFS patients how they fared with the various ME/CFS treatments.

This survey would allow them the grade any improvement or worsening they experienced by specifying their movement (upwards or downwards) on the scale of mild, moderate, severe and very severe.

The survey would also allow them to state whether the treatment continued to work long-term, or whether it stopped working after some time. And allow them to report whether in the long term they developed any adverse effects which forced them to stop the treatment.

Plus it would allow patients to report whether the treatment had permanent benefits that remained even after stopping; or whether the benefits are only maintained by continuation of the treatment.

But one issue is that there is no easy means I can think of to get this survey seen by a wide enough audience of ME/CFS patients — especially patients who may have recovered, and so rarely look at ME/CFS forums or social media.


In terms of patients being made permanently worse on a treatment: I can only remember some of KDM's patients on high dose antibiotics for long periods reporting that they became permanently worse (but some also got better on this treatment). And if I remember correctly, there was one person who said they had become permanently worse after oxymatrine. But I don't recall at the moment any other stories of permanent worsening.

 

[Hipsman]

@Hip I remember you telling me about someone becoming permanently worse after Inosine pranobex, also there was someone getting permanently worse from valcyte and Whitney Dafoe became very severe after trying rituximab...

I really liked you advice about starting Inosine pranobex with low dose to see if it makes you worse, I see many situations when this strategy makes treatments much less risky (not just Inosine pranobex), I think more patients need to follow this, would probably be more effective since for most treatments there is small group that improves, small group that gets worse and the rest remain at baseline...

 

[Hip]

@Hip I remember you telling me about someone becoming permanently worse after Inosine pranobex, also there was someone getting permanently worse from valcyte and Whitney Dafoe became very severe after trying rituximab...

Ah yes, I forgot about inosine pranobex (Imunovir). I don't seem to remember any stories of people getting worse after Valcyte, but I may have missed them for forgotten them.

Rituximab I would not consider a viable ME/CFS treatment (even before the negative phase III trial, a survey I conducted on PR found that almost nobody with ME/CFS benefitted from it). But yes it certainly can have major adverse effects.

 

[BrightCandle]

I am in rapid remission and since I can no longer discuss my treatment here putting it in for the record:

Hummingbird 5% to 60% on mental and physical (a 1.5 level gain from severe to mild) in space of 25 days on Joshua's HASD protocol v3.2.

 

[borko2100]

Very interesting. I took 150mg -300mg of Benfotiamine for about two or three months in 2018.
I didnt feel calmer but cognitionwise it seemed to do something for me. Then suddenly I couldnt tolerate it anymore -and still cant tolerate even the tyniest dose to this day. 🤷🏻‍♀️

I have taken Sulbutiamine several times. It is another derivative of tiamine that is supposedly even more bioavailable in the brain and it did nothing at all. I experimented with different doses from 200 to 1400 mg.

 

[Mary]

I am in rapid remission and since I can no longer discuss my treatment here putting it in for the record:

@BrightCandle - you're welcome to post about your treatment using Joshua's HASD protocol.

 

[Hip]

I am in rapid remission and since I can no longer discuss my treatment here putting it in for the record:

Hummingbird 5% to 60% on mental and physical (a 1.5 level gain from severe to mild) in space of 25 days on Joshua's HASD protocol v3.2.

Thanks for posting you story, @BrightCandle.

Would you have a link to this protocol (or can you post the protocol here), so that I can add your improvement story to the list of stories in this thread when I next update it? Many thanks.

 

[max_yazhbin]

I did see some people say that oxymatrine is too expensive, I found a cheaper one: https://alternativemedicinesolution.com/oxymatrine/, please let me know if it is helpful

 

[pamojja]

Thanks for posting you story, @BrightCandle.

Would you have a link to this protocol (or can you post the protocol here),

It's found in this thread: https://forums.phoenixrising.me/threads/me-cfs-research-herpes-autoimmune-spectrum-disorder.83371/

 

[Martin aka paused||M.E.]

Thanks for posting you story, @BrightCandle.

Would you have a link to this protocol (or can you post the protocol here), so that I can add your improvement story to the list of stories in this thread when I next update it? Many thanks.

I think he won’t be able to do that. Three threads on that topic have been closed already

 

[godlovesatrier]

@Hip I've gone from almost housebound to being able to tolerate low levels of execercise, full amelioration of sore throat, neck pain, cranial cervical junction swelling, dry mouth, oral wound healing (haven't had a single canker sore since I started the protocol). Still gaining more improvements currently so not done yet, but will be awhile before I would call this remission, as I can't do higher levels of exercise and the covid 2nd jab sort of set me back a little. But all the things I mentioned here are still present. Same protocol Pamojja posted (v3.2 not 3.3 of the protocol). I managed to block PEM at 200mg egcg while on the linked protocol, with PEM buffered to about 80% at 125mg egcg. Haven't really had any side effects, process is still ongoing for another month or two for me before I see if remission is 100% possible.

Not really sure what my improvement is in in terms of levels. Was going out once a fortnight before the protocol, trouble getting up and down the stairs, unable to do any jobs or diy or things like that. Girlfriend cared for me half the time, I cooked sparingly, once or twice a week when I had the energy. Didn't touch cleaning, struggled cognitively with brain fog and slow brain due to fatigue. Worked full time but remotely on a very untaxing project where I am basically only having to do 2-3 hours work a day (currently). Unable to drive for more than 15 minutes at a time, exhausted thereafter. Didn't walk anywhere. Unable to tolerate socialising outdoors in groups, even with one person head would swell up badly.

Now I am able to go out every day with the car. Can drive for about 25 minutes, haven't tested how far I can go yet. Managed graded exercise a few weeks ago but none since due to 2nd covid jab. Been out for a 25 minute walk. Able to cook probably half the days of the week. Mental clarity at work is much improved, I definitely feel like I have the energy to tolerate being in an office for 1 or 2 days a week. Able to do diy, like painting garden furniture, able to do some hobbies etc. This was mainly pre 2nd covib jab. But still doing really well.

I will report back if I ever hit remission.

Direct link: https://www.researchgate.net/public...for_Rapid_Testing_of_HASD_CFSME_Disease_Model

The only difference is I didn't take the glutathione or the creatine.