List of ME/CFS Recovery and Improvement Stories

[Mary]

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

Good question! I didn't have regular testing done at the time. So in April 2013 my HHV-6 IGG was 1:640 and my doctor (who was not a specialist) didn't say anything about it.

My HHV-6 was re-tested in Sept. 2015, by Dr. Kaufman in Mountain View and my result was 1:160. He said that if my result had been the same as in 2013, he would have put me on an antiviral (though I don't know which one). All I can figure is the andrographis helped with this, and general immune support - vitamin C, vitamin D, vitamin A.

In July 2020, my (new) doctor did an HHV-6 DNA PCR test and the result was less than 500, and the normal reference range was less than 500 - I don't know why she did this test instead of the other one. Afraid I am very ignorant about virus testing!

 

[Judee]

In July 2020, my (new) doctor did an HHV-6 DNA PCR test and the result was less than 500, and the normal reference range was less than 500 - I don't know why she did this test instead of the other one. Afraid I am very ignorant about virus testing!

The HHV-6 foundation says, "Detection of HHV-6 DNA in plasma generally means the patient has an active infection" so maybe that's why she chose that testing.

 

[msf]

Hi Hip,

I would like to be added to the list of recovery stories. I have gone from being mostly housebound to being functionally healthy (as in being able to do strenous exercise like boxing with very little or no PEM while working full-time and having a social life). My story could probably come under one of four headings, the KDM one, the gut one, the PEM one, and a Chinese skullcap one that I would suggest you add, since it is easily the most effective treatment I have tried so far: in my experience it is much more effeetive and much less toxic than DCA for instance.

Thanks,

Msf

 

[sometexan84]

@Hip Congrats on the PIN!

 

[godlovesatrier]

Hey @Hip

You could also add the recovery story of Dr Claire Bowen who had ME/FM for 20 years and recovered by using an airnergy machine (activated air/singlet oxygen therapy). Her story is here: https://www.drclairebowen.com/clairebowenstory/

Claire went from being barely able to talk when seeing doctors to being able to have a child and go back to running marathons , she also works full time and drives all over the country now. From what I can gather talking to Claire it took quite a long time to see results from airnergy. But they appeared slowly and based on testimonials I have found it seems not uncommon for ME patients to have to use therapy for 6-12 months before seeing more of a remission type improvement. It seems that even when that occurs sustained use of the machine at a maintenance dose is required: http://www.biolifesolutions.co.uk/airnergy-reviews-and-testimonials/ (Kim's story is the one that I found most useful as she also mentions remission).

I'm also using this therapy currently and I have absolutely had a 1/2 level increase in mental and physical energy. The side effects are basically non existent but it's very early days for me (4-6 weeks), my only gripe is that it can be over stimulating sometimes. At any rate Claire and Kim's story above both showed remission and I believe based on private chats there are many more patients like this, sadly there testimonials don't exist (I have looked very extensively for any others and have not found any).

Whether Claire responded better because she had FM is unclear, but for Kim it seemed to work a treat.

 

[Hipsman]

airnergy machine

The pricing on that thing is no joke! lowest I saw second hand is 1150$

 

[godlovesatrier]

Yes there not cheap, it's the one thing honestly that I don't like about it. But I've done a trial £125 a month for a Kinetic Oxygen 6 to see if it works, it's a 3 month trial so I should know by then if it's been a success or not. Discontinuing it doesn't cause a crash either which is nice. Although you do miss it after a day or two once it's not there.

 

[Hip]

I would like to be added to the list of recovery stories. I have gone from being mostly housebound to being functionally healthy (as in being able to do strenous exercise like boxing with very little or no PEM while working full-time and having a social life). My story could probably come under one of four headings, the KDM one, the gut one, the PEM one, and a Chinese skullcap one that I would suggest you add, since it is easily the most effective treatment I have tried so far: in my experience it is much more effeetive and much less toxic than DCA for instance.

Are you saying that your Chinese skullcap PEM buster (which is detailed in the PEM busters thread) has actually resulted in your ME/CFS itself improving from moderate (housebound) to a higher level like mild (able to work full or part time)?

Usually PEM busters do not improve the base level of ME/CFS, but just prevent or reduce PEM after exertion.

The first post of this recovery and improvement thread does have a special PEM section, which points to the PEM buster thread that includes your Chinese skullcap story. I could include your Chinese skullcap PEM preventer in this PEM section; but then I would probably need include all the different PEM busters listed in the PEM buster thread.

@Hip Congrats on the PIN!

PIN?

You could also add the recovery story of Dr Claire Bowen who had ME/FM for 20 years and recovered by using an airnergy machine (activated air/singlet oxygen therapy). Her story is here: https://www.drclairebowen.com/clairebowenstory/

I just read her full story in your link, but from Claire Bowen's report, it's not clear that the activated oxygen (singlet oxygen) therapy was the sole cause of her recovery. She wrote :

The effects [of activated oxygen] of this were huge (not a miracle cure, though it certainly started to turn my life around!) and included me feeling as if I was starting to get my brain back again (I felt my IQ had been halved upon becoming ill).

This, coupled with increased energy levels, meant I was able to start researching why oxygen might be so important in ME / CFS – and what else was relevant.

Little by little I started to piece together information from others’ research and my own intuition and experience that led me to develop a ‘model’ of the cause and development of ME / CFS – and subsequently a model for recovery – through addressing the relevant causative aspects in an accessible, comprehensive way.

It sounds like activated oxygen was a big help to her, but her full recovery resulted from her "addressing the relevant causative aspects in an accessible, comprehensive way".

It's also worth pointing out that Claire had a history of infection-triggered ME/CFS symptoms since the age of 5, and lots of ups and downs throughout her life, with recoveries for some years, and the relapses after a new infection was caught. So the recovery she had which was linked to active oxygen use may have just been part of the many ups and downs she always had.

 

[msf]

Are you saying that your Chinese skullcap PEM buster (which is detailed in the PEM busters thread) has actually resulted in your ME/CFS itself improving from moderate (housebound) to a higher level like mild (able to work full or part time)?

Usually PEM busters do not improve the base level of ME/CFS, but just prevent or reduce PEM after exertion.

The first post of this recovery and improvement thread does have a special PEM section, which points to the PEM buster thread that includes your Chinese skullcap story. I could include your Chinese skullcap PEM preventer in this PEM section; but then I would probably need include all the different PEM busters listed in the PEM buster thread.

It's a bit more complicated than that, which is why it could fit under multiple headings: basically some of the treatments prescribed by KDM plus Trazadone and FODMAP helped me to go from pretty much housebound to getting back to work, and then first ALA (which was also necessary for getting back to work) and then to a much larger extent Chinese skullcap actually allowed me to have a social life and exercise freely.

 

[Hip]

basically some of the treatments prescribed by KDM plus Trazadone and FODMAP helped me to go from pretty much housebound to getting back to work, and then first ALA (which was also necessary for getting back to work) and then to a much larger extent Chinese skullcap actually allowed me to have a social life and exercise freely.

OK, would you be able to provide a link or links to where you have written up these various treatments, which when combined have raised you health level from moderate to mild? Then I can include your story.

 

[msf]

OK, would you be able to provide a link or links to where you have written up these various treatments, which when combined have raised you health level from moderate to mild? Then I can include your story.

So far I have only written in detail about Chinese skullcap (as I think many others are already aware of Trazodone and FODMAP) in this thread: https://forums.phoenixrising.me/thr...nergy-problem-in-me.80389/page-7#post-2316007

I will write a blog at some point outlining the steps involved in my recovery - I will add this to the (still unfinished) series of blogs about my current understanding of ME, in which I also mention skullcap and ALA: https://forums.phoenixrising.me/blo...erstanding-of-me-part-4-lactic-acid-pem.2184/

 

[crowtor]

I just read her full story in your link, but from Claire Bowen's report, it's not clear that the activated oxygen (single oxygen) therapy was the sole cause of her recovery.

It's also worth pointing out that Claire had a history of infection-triggered ME/CFS symptoms since the age of 5, and lots of ups and downs throughout her life, with recoveries for some years, and the relapses after a new infection was caught. So the recovery she had which was linked to active oxygen use may have just been part of the many ups and downs she always had.

Inhaling ozone can damage the lungs, I don't read stories about miracle devices so I don't know if she was inhaling it but I'd be careful with anything that involves ozone being generated in a room.

 

[Hip]

Inhaling ozone can damage the lungs

Ozone gas is definitely bad for the lungs. Singlet oxygen is not the same as ozone though (but singlet oxygen could potentially have equally bad effects on the lungs).

 

[godlovesatrier]

Hi @Hip

Another one for the thread : https://www.prohealth.com/library/how-i-found-my-long-lost-energy-31319 (March 2021)
The patient story describes her dosing at the end of the article and her name is against the article itself.

I've been taking high dose thiamine for about a 7 days now and I've noticed a massive improvement in symptoms and energy. I didn't reach therapeutic dose until I got to 1200mg. I also got my first cold in over a year. Not sure if this is a coincidence. But my energy level and mental clarity are a lot better. While I didn't feel physically stronger initially I do actually feel stronger now. I'm amazed at how strong this stuff is if I'm honest! I'm still playing around with dosing but I've so far experienced very little to almost no PEM. I also feel a little more relaxed and like my old self than usual. While this isn't a major thing I do feel my mood has improved. I do still get some muscle fatigue while doing activities but I recover quickly from this if I sit down or rest.
I was also experiencing lots of swelling at the back of my head around the occipital lymph nodes since February. The first thing I noticed was that I had reduced swelling or neck pain, the second was a warm cloth like sensation at the back of my head and the third was that the swelling had moved down my spine (as of the second day). As of the third day I felt no swelling at all anywhere in my spine or neck/head (I tested this by doing a mentally taxing task with lots of head movement over 3 days, in this case working on a complex 4000 piece puzzle for about an hour a day, or more when inflammation went down to zero).

 

[Hip]

Another one for the thread : https://www.prohealth.com/library/how-i-found-my-long-lost-energy-31319 (March 2021)

Thanks for that link; that is a fibromyalgia patient through. Would you know of any stories online of high-dose vitamin B1 helping an ME/CFS patient?

 

[Wishful]

B1 seemed to reduce my ME symptoms the first tablet or two, but then stopped working. That was at the recommended dosage.

 

[sb4]

B1 seemed to reduce my ME symptoms the first tablet or two, but then stopped working. That was at the recommended dosage.

I had the same thing. Did you notice relaxation upon taking B1 that then stopped after a couple of days?

 

[junkcrap50]

I've been taking high dose thiamine for about a 7 days now and I've noticed a massive improvement in symptoms and energy. I didn't reach therapeutic dose until I got to 1200mg.

Is that 1200mg of the regular form of thiamine, like thiamine monophosphate (TMP), thiamine triphosphate (TTP), and thiamine pyrophosphate (TPP)? Or is the 1200mg of the more absorbable, synthetic forms of thiamine like allithiamine, sulbutiamine, benfotiamine, and fursultiamine? Which form and dose do the success stories use? If you use the synthetic forms, what levels are effective? Less than 1200mg because more of the synthetic form gets absorbed, or does the 1200mg assume you take the most absorbable form?

 

[godlovesatrier]

I'll keep an eye out not seen any yet I don't think @Hip

I do think I'm absorbing a lot but this is just a feeling at the moment based on me having to reduce the dosage for sleep purposes. More work required.

I went out yesterday and decided to to for a walk round a local town. Felt a bit dizzy but other than that my body recovered. I didn't even crash! Although my muscles were a little worn out once I sat down. Probably after 45 minutes of walking. Later in the evening did some more driving (this was after a good 90 minutes sat down) and felt ok when I got in. Was a tad high last night though so had to buy the nytol diphenhydramine 50mg tablets to help me sleep. With that plus 1.5mg melatonin and a load of 5-htp I managed to sleep through more or less. I am still playing around with dosage but yesterday I took 800mg just to stop me waking up at night.

I'm taking this one nothing fancy: https://www.dolphinfitness.co.uk/en/natures-aid-vitamin-b1-thiamin-100-mg-90-tablets/142527
Dosing was like this for me
Day1: 25mg start dose to check tolerance
Day2: 100mg
Day3: 300mg
Day4: 600mg
Day5: 800mg
Day6: 800mg
Day7: 1200mg
Day8: 1200mg
Day9: 800mg

Today will be day 10. Woke up without muscle fatigue as per exertion on day 9. I'm amazed to be honest. There's literally no side effects for me apart from not being able to sleep properly for about 5 hours. But last night I was a lot better (lowering the dose helped I think!).

I'm not sure what type of thiamine the others were taking. However Corts article might be able to help: https://www.healthrising.org/blog/2021/04/15/thiamine-b-1-chronic-fatigue-syndrome-fibromyalgia/

I'm going to post this info on the high dose thiamine thread anyway don't want to derail this one too much. Hopefully the thiamine keeps working. I am doing a protocol of different things so could well be a combination effect. However the thiamine had by far the largest and biggest noticeable change. My whole body woke up when I took 1200mg.

 

[godlovesatrier]

@junkcrap50 if you check Corts article I'm sure he mentions the Italian scientist who did the high dose thiamine study in ME patients. They noticed a high incidence of change when taking high dose thiamine. After researching it in more detail I've found out it has all sorts of good things going for it. It appears to be the energy required to get many bodily enzyme processes working. Plus defiency might be more common in those chronically ill. Cort also discusses the dosing regime which went all the way up to 1800mg before patients saw therapeutic benefit. Hope that helps.