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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I do rather like @Hoosierfans - apart from being just an all-round good person, she also has a very interesting set of symptoms and some variations outside the standard HHV serology, etc. I anticipate we'll get to the bottom of these fairly soon. The additional scope from the serology profile may be adding some fresh challenges, but I think we're getting somewhere.@Hoosierfans - thanks for the report. I appreciated your letting us know that your symptoms are not post - exertional, unless I misunderstand you - PEM. I always thought that was the hallmark of ME, as opposed to MS, for instance - but maybe that's CFS. Or maybe that has changed over time for you. Whatever is happening, I hope this protocol works out really well for you.
Most people I’m working with have been sick for decades. I’m hoping to get the treatment to a “once-per-day” administration with timed release.
So far:Hi Joshua,
Are you able to let us know which diseases patients have been diagnosed with? I saw hoosier mention that they didn't have a formal diagnosis. But I am sure you said the other two patients you treated did have an ME diagnosis?
While glycine and cysteine are important for making glutathione, collagen synthesis, sleep, etc., cysteine is also used to make CoA, which becomes Acetyl-CoA.
Best general advice is to start with tests for that.Glad to hear that! Hopefully you have a protocol for heavy metals also? I’m certain I have lead and arsenic, just for starters...
Good question - there’s evidence for both inducing and protecting against ammonia.I realize glycine is required for making glutathione, etc., but doesn't it also generate quite a bit of ammonia? Seems like I read it's one of two ammoniagenic (sp) amino acids...
Good question - there’s evidence for both inducing and protecting against ammonia.
Overall, my opinion and experiences have been that it’s significantly more helpful than harmful.
I like it a lot.
eg. I personally use it as a sugar substitute and pour it into cereals, coffee, pasta sauce, etc.
My daily intake is usually between 30-60g
The apple cider vinegar capsules are dried powder and slow release into the large intestine. I talked about fruit vinegars in the second paper, as they closely resemble the output of a functioning gut microbiome - same microbes, same fibres, same organic acids. ❤Whats the trick of the apple cider ? I know that many with the CFS/ME avoid drinking alcohol, so I've copied their advice and never tried it for fear of disease progression, perhaps this could be another clue that there is significance of the liver function ?
I hope to be able to try the 'succinate test' on Friday then everything else soon after, if it make any noticeable improvement for me it will feel like a miracle. Typical day for me at the moment is struggle to get up stairs, go slowly, spending lot of time on computer, any chemicals in the air unsettle me, feel nausea just resting looking on computer ( problem that started last summer ), go drive bike for 2 hours to pass the time and because clean air and adrenaline often seem to help me, after that my heart rate seem really high at rest and I feel sleepy, go to bed around 7pm and get up at 1am, will go back to sleep before dawn.
Open Medicine Foundation Open House May 2021 I wonder if this might contain any useful information for you ? also if you want a challenge of thinking, what mechanism explains how someone can go from mild to severe within the same illness ? could it be an increase in the % of cells that are occupied by what I call stealth virus, for lack of better understanding ? Could metabolic trap that is touted by Dr Davis explain how our bodies are susceptible to developing this problem at the point of onset whereas a normal person is able to full recover ? I wonder if it in some way limits the capabilities of the immune system that in some way allows the herpes virus to infiltrate and cause trouble. Also should we make another thread in the 'Treatment' section about this ?
More infected cells, definitely.. however the rapid downhill one is simply *diet*.how someone can go from mild to severe within the same illness ? could it be an increase in the % of cells that are occupied by what I call stealth virus, for lack of better understanding ?
yes I thought this too. In the paper @joshua.leisk describes these four things but earlier in this thread there is a coloured chart with all the things, but I'm not sure ACV is on that chart either.I’m confused about where the ACV and glycine came from. I had thought we were just taking four substances: reishi, ECGC, R-ALA, lion’s mane. Obviously I’m missing something... oops