Reading_Steiner
Senior Member
- Messages
- 245
I will post my experience here with this treatment plan, I previously have described how I reacted to Succinic Acid, which is one test that someone can do that indicates suitability for effectiveness of antiviral techniques that target HHV-6 and similar latent infection. You can find information about the science of this in the Latest Research section.
My background -
2015 - acute viral onset resembling Labyrinthitis, following exercise overtraining. Blood tests showed no definitive cause, conclusion at the time was probably EBV. Remained able to exercise at 1/3 capacity, with no endorphin response, this got lower in following weeks.
2016 - was still able to walk long distances, but started having to take breaks, felt stomach ache near the diaphram immediately after these walks, distance became less and less, was still doing heavy DIY though. Tried GET unofficially, it made me worse. Started to go into a downward spiral that nothing seemed to improve. In the space of 2 to 3 months I went from mild to very severe.
Unable to use computer, read a book, listen to music, eat food etc. Couldn't look out of a window or be blinded for minutes by light sensitivity. This lasted around 1 month,
I learned to control what I was thinking about and I imagined myself to be a different person with a different personality to facilitate this, shutting down access to my memories / usual preoccupations which placed a burden on mental energy. After this happened I was no longer able to tolerate any exercise such as walking, and I never tried to leave the house under my own physical power. Spent long time slowly improving by rest / pacing, but suffered terribly from orthostatic intolerance ( with occasional POTS ). I used VR a lot to block out visual clutter and help me ignore other people in the house etc. I used the beta blocker drug Propranolol to slow my heart rate and it seemed to help with muscle aches. I spent most of the time with legs raised using a chair that could do a lot of different stuff.
2017 / 2018 / 2019-
Reached a sort of equilibrium where I was effectively moderate, I would get bad PEM if I overdid things and I would sometimes crash, once every few months, but it was generally a week long thing, not on and off quickly. Developed noticeable MCS, particularly to black mould.
Left the house fairly often relying on mobility scooter. Learned a lot of different skills during this time, which seems to correspond with Joshua's theories ( if you read the papers ).
2020 / 2021 - Factors outside of my control / life circumstances changed and I had much more emotional / mental stress, physical exertion and environmental triggers. After a few months of this I developed new symptoms, what I called Super Hayfever at the time, my entire throat would burn in a prickly way, I had terrible nausea, I took to wearing a mask all of the time, even when sleeping ( nothing to do with coronavirus ). The worst of this resolved itself after a while but my symptom profile was permanently altered, with occasional sore throats, much higher MCS, and stomach sensitivity issues that scaled up when I was near crashing, crashes became much more frequent although often short lived, coinciding with elevated pounding heart rates that would not abate at rest, but minimal orthostatic intolerance and no POTS.
I had never heard of Joshua before I read the paper he put here about a month ago. I had been looking for a treatment that was safe, inexpensive / easily accessible, with a high enough predicted effective rate to be worth trying, previously the only treatments I had tried were probiotics and BCAA, I have some relief from the latter, hard to say with the former.
I have been most impressed in recent months by theories and observations regarding blood flow problems and latent viral infections, I found those to hold the most likely promise.
I have been taking the treatment described in the paper for 24 hours now, and I observe physiological changes consistent with the theory described in the paper, which align perfectly with the taking of specific substances. If I don't take the sodium benzoate fast enough for example I will start getting a pressure headache, which disappears when I have taken the drug.
My ME/CFS symptoms are noticeably reduced, and I feel what I believe is immune activation, particularly feeling differences at my stomach, face ( red face ? ) and brain. The immune reaction is not as strong as I expected however, it is not very uncomfortable yet.
If you have also decided to try this experimental method, please also add your experiences !
My background -
2015 - acute viral onset resembling Labyrinthitis, following exercise overtraining. Blood tests showed no definitive cause, conclusion at the time was probably EBV. Remained able to exercise at 1/3 capacity, with no endorphin response, this got lower in following weeks.
2016 - was still able to walk long distances, but started having to take breaks, felt stomach ache near the diaphram immediately after these walks, distance became less and less, was still doing heavy DIY though. Tried GET unofficially, it made me worse. Started to go into a downward spiral that nothing seemed to improve. In the space of 2 to 3 months I went from mild to very severe.
Unable to use computer, read a book, listen to music, eat food etc. Couldn't look out of a window or be blinded for minutes by light sensitivity. This lasted around 1 month,
I learned to control what I was thinking about and I imagined myself to be a different person with a different personality to facilitate this, shutting down access to my memories / usual preoccupations which placed a burden on mental energy. After this happened I was no longer able to tolerate any exercise such as walking, and I never tried to leave the house under my own physical power. Spent long time slowly improving by rest / pacing, but suffered terribly from orthostatic intolerance ( with occasional POTS ). I used VR a lot to block out visual clutter and help me ignore other people in the house etc. I used the beta blocker drug Propranolol to slow my heart rate and it seemed to help with muscle aches. I spent most of the time with legs raised using a chair that could do a lot of different stuff.
2017 / 2018 / 2019-
Reached a sort of equilibrium where I was effectively moderate, I would get bad PEM if I overdid things and I would sometimes crash, once every few months, but it was generally a week long thing, not on and off quickly. Developed noticeable MCS, particularly to black mould.
Left the house fairly often relying on mobility scooter. Learned a lot of different skills during this time, which seems to correspond with Joshua's theories ( if you read the papers ).
2020 / 2021 - Factors outside of my control / life circumstances changed and I had much more emotional / mental stress, physical exertion and environmental triggers. After a few months of this I developed new symptoms, what I called Super Hayfever at the time, my entire throat would burn in a prickly way, I had terrible nausea, I took to wearing a mask all of the time, even when sleeping ( nothing to do with coronavirus ). The worst of this resolved itself after a while but my symptom profile was permanently altered, with occasional sore throats, much higher MCS, and stomach sensitivity issues that scaled up when I was near crashing, crashes became much more frequent although often short lived, coinciding with elevated pounding heart rates that would not abate at rest, but minimal orthostatic intolerance and no POTS.
I had never heard of Joshua before I read the paper he put here about a month ago. I had been looking for a treatment that was safe, inexpensive / easily accessible, with a high enough predicted effective rate to be worth trying, previously the only treatments I had tried were probiotics and BCAA, I have some relief from the latter, hard to say with the former.
I have been most impressed in recent months by theories and observations regarding blood flow problems and latent viral infections, I found those to hold the most likely promise.
I have been taking the treatment described in the paper for 24 hours now, and I observe physiological changes consistent with the theory described in the paper, which align perfectly with the taking of specific substances. If I don't take the sodium benzoate fast enough for example I will start getting a pressure headache, which disappears when I have taken the drug.
My ME/CFS symptoms are noticeably reduced, and I feel what I believe is immune activation, particularly feeling differences at my stomach, face ( red face ? ) and brain. The immune reaction is not as strong as I expected however, it is not very uncomfortable yet.
If you have also decided to try this experimental method, please also add your experiences !
