• Welcome to Phoenix Rising!

    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.

    To register, simply click the Register button at the top right.



I just want to give a feedback on how I do on Freddds protocol.
I want to start by giving an overview of my symptoms and then tell how Freddds protocol worked so far.

My situation certainly is better than that of most people here on the forum, so forgive me if some things sound like high level griping.

Im able to walk long distances without any big problems (but cant run without getting some kind of inflammation in the throat, getting nauseated and/or feeling dull/lethargic or, whats really strange, I cant clean my apartment without getting that dull/lethargic feeling) and Im able to work, but Im not able to do any other sport, which I did a lot until about 10 years ago or work on a normal level.

I would say that Im about 70% overall.
For years I had different kinds of symptoms. IBS, low energy, my cognitive ability got worse and I had neurological symptoms like auras with dj-vues (without seizures) some kind of panic attacks or a strange feeling in the upper gut with weakness in the legs and subsequent cold sweating, all without a positive result on CTs etc.

It could all have started with a virus infection which had about 12 years ago, although I had some kind of IBS before. But its hard to say because it slowly got worse over the years. I also suspect spinal problems to be a contributing factor to my problems (Perrins hypothesis is something that could fit with my problems since I have a couple of characteristics he describes).

I have diagnostic findings of high NO and citrulline, low Immunoglobulin A, positive LTT for Epstein Barr, Cytomegalovirus, Varicella Zoster and Chlamydia Pneumoniae, very high TNF-Alpha, low NK cells. I had high TSH levels without the other thyroid markers being high or low (some M.D. say it doesnt matter others say that it may be a preliminary phase of Hashimoto). I take L-Thyroxine. Also I noticed that I cant tolerate histamine liberators, which I could tolerate in the past. I have some problems with my soft tissue too.

At the end of last year I got increased muscle pains (feet, hands, arms), got really exhausted during my usual walks and got really bad reactions to alcohol (yes, I was able to drink some alcohol, though I didnt do it that often). A possible cause (for whatever reason) could be that I took Sulpiride and then Insidon (each for about 3 weeks) prescribed by a neurologist.

I then took some magnesium, which made my situation a little bit better.

Then I started Freddds protocol. I started with the adb12, which was a great experience. My muscles felt really, really good, so did my whole body. My muscle pains disappear when I take adb12 and I feel that I can take more pain. I had lots of energy after only 5mg adb12.
I can do my normal walking again when taking adb12. When I stop taking it the muscle pain starts coming back pretty soon.
Also I have significantly less periods of tiredness (which I always feel in my head/my eyes; I dont know how to explain that, but there are different kinds of tiredness and low energy levels) with the adb12.
I find adb12 and Rolfing to have great effects on my body, especially my muscles and tissue. I have more energy and feel relaxed/calm with more self awareness (that wired feeling goes away with it).

I added all the other supplements subsequently.

I still couldnt say that mb12 has an effect.

Im also not sure about potassium, B-complex and Metafolin.

Calcium, Zinc, TMG and D-Ribose all make me feel nauseated. At least with Calcium and Zinc I can take less so that the effect isnt that bad.

Acetyl carnitine has no effect that Im aware of.

I think that SAM-E really helps together with the adb12 and to improve my mood.
I also take the other Vitamins and Omega 3 fishoil.

Really interesting is my reaction to ALA. When I take ALA my muscles or tendons (or something else?) are feeling inflamed on some places (for example heels and hands). I looked at my notes when I was following Cuttlers protocol a while back and noticed that I had the same effect while taking ALA with DMSA.

Any suggestions on why adb12, SAM-E, Magnesium have positive effects on me and especially ALA that bad effect?

Maybe Freddd and/or Rich have any suggestions. But of course I also appreciate the input of others.
Many thanks to everyone on this forum. Especially to Freddd and Rich for their endless work and patience.

Kind regards