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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. C

    Promethease--homozygous for AMPD1. I need D-ribose?

  2. C

    Wow. These symptoms look familiar....high ACh?

    Benadryl blocks all the mACh subtypes across the board pretty equally it seems. As for Atarax, it really just hits the H1 histamine receptor hard and doesn't jack with mACh. From Wiki: "Unlike many other first-generation antihistamines, hydroxyzine has very low affinity for the muscarinic...
  3. C

    New Test Results, Need Some Help

    These are all potential cholinergic problem symptoms. Do you have decreased sweating? Flushing or red blotchy skin sometimes? Do your pupils seem large sometimes and/or sensitivity to light? Rapid heartbeat? Any meds you are taking, ask Google if they are anticholinergic and avoid if they are.
  4. C

    Wow. These symptoms look familiar....high ACh?

    Benadryl is an anticholinergic agent. Specifically to the muscarinic receptors. Actually is a known cause of dementia in the elderly with chronic use. Benadryl antagonizes the ACh muscarinic receptors. If you have antibodies already "antagonizing" them then you could wind up with cholinergic...
  5. C

    Wow. These symptoms look familiar....high ACh?

    Wow. Well, the good news is you likely don't have CFS, but you need to look up Myasthenia Gravis. Not that it is any better but at least Dr's should know what to target to help you. Do you know which receptors? Nicotinic? Muscarinic? How does benadryl make you feel in general? AChR antibodies...
  6. C

    Wow. These symptoms look familiar....high ACh?

    Symptoms of High Acetylcholine Subdued or depressed mood Anhedonia (inability to experience pleasure) Difficulty concentrating Difficulty with higher-order or complex thought processes Mental fatigue Mental confusion Memory problems Decreased motivation Feeling overly sleepy or tired...
  7. C

    Balancing neurotransmitters?

    Do you have a reason why or just a general aversion to prescription medication? I have just begun Namenda/Memantine based upon a hunch. It slows progression of Alzheimer's by down regulating one of the mechanism I think might be involved in all of this. I welcome any input.
  8. C

    Alternative Ways of Administering High Dose Vitamin B12

    Yes. Perhaps this is a better illustration at time 0:24. A saturated "q-tip" type applicator works much better for me due to increased surface area. Mention of NPG swab was just because it is easier to get there with that, but the thin tip doesn't quite do as much of what I want to do vs the...
  9. C

    how long does glutathione last?

    You can make suppositories out of reduced glutathione powder, food grade cacao butter and some suppository molds and a little trial and error. They work pretty well and quickly but like any glutathione doesn't last long. I keep expensive liposomal around but only use it for emergencies. Like...
  10. C

    Promethease--homozygous for AMPD1. I need D-ribose?

    Thanks. I put in my application....
  11. C

    Alternative Ways of Administering High Dose Vitamin B12

    I've been experimenting with stimulating the upper repiratory epithelium using nasopharygeal (NPG) swabs, long q-tips, regular q-tips....and have had some pretty good results for what I was looking to accomplish, but thats another story. I read this and since I'm in the lab right now, I had a...
  12. C

    Persistent dandruff.

    Edit: I should mention that I'm all but cured now for the first time in nearly 10 years. I've been supplementing heavily on my SNPs, and I am also Keto. I think one think that might for sure be helping is taking enzymes with my meals. I have low stomach acid and low carb/ keto you really need...
  13. C

    Persistent dandruff.

    Im not sure what severity you have but if it is closer to SD then If you have bumps you can spot treat them with steroid creams. 2% salicylic acid shampoos and coal tar shampoos work the best for me. Nobody should ever make the mistake I did and use them everyday for 3 years because they worked...
  14. C

    Promethease--homozygous for AMPD1. I need D-ribose?

    I picked some up today but I'm not expecting miracles. But you never know. I mean, people want to bring up that most people with AMPD1 don't have symptoms. Well, most people don't get headaches by smelling a perfume or 2 day hangovers from drinking a beer either LOL. Our group of people seem...
  15. C

    Low Dose Dextromethorphan (cough syrup) looks promising. Has anyone tried it?

    Sorry I have to create yet another comment because I want to re-emphasize the greatness of that article I linked. https://www.healthrising.org/blog/2013/02/15/glutamate-one-more-piece-in-the-chronic-fatigue-syndrome-mecfs-puzzle-the-neuroinflammatory-series-pt-ii/ Oh, and here is part 1 of...
  16. C

    Low Dose Dextromethorphan (cough syrup) looks promising. Has anyone tried it?

    I have suspected glutamate as being one part of the puzzle of this illness. I discovered the Lamictal/Klonopin combo a decade ago and this combo has nearly eliminated my crashes. If I stop either or both, they come back. Lamictal reduces glutamate and enhances GABA Klonopin (through activation...
  17. C

    Your experiences with Melatonin

    I solved melatonin for me awhile back. There is a big issue with people overestimating what the dose should be since it is "only a supplement". People are taking 10 mgs of this stuff sometimes. No, no, no! There is some literature somewhere about these high doses but i don't have time to find...
  18. C

    Promethease--homozygous for AMPD1. I need D-ribose?

    No. I'm beginning to learn that this things a whole bunch of dominoes that have fall just right. It makes sense though to support all of your separate conditions to hope to get right again. Screw doctors. If they aren't willing to help support one condition that might not be THE CAUSE but might...
  19. C

    Promethease--homozygous for AMPD1. I need D-ribose?

    " rs17602729(T;T) AMPD1 deficiency homozygous This is found in ~2% of all caucasians. The majority of people with the AMPD gene are asymptomatic, but in response to vigorous exercise, others have symptoms including early fatigue, muscle pain and muscle cramping. •...
  20. C

    Neurasthenia...19th Century ME/CFS?--WIKI

    Further down the rabbit hole.......... https://en.wikipedia.org/wiki/Dysautonomia Signs and symptoms[edit] The symptoms of dysautonomia, which are numerous and vary widely for each individual, are due to inefficient or unbalanced efferent signals sent via both systems. The primary symptoms in...
  21. C

    Neurasthenia...19th Century ME/CFS?--WIKI

    I went down one of the internet rabbit holes and somehow wound up at Neurasthenia. I noted some similarities...largely considered a mental disorder and the term abandoned later. Freud and other notables worked on these cases. https://en.wikipedia.org/wiki/Neurasthenia Classic Freud: "In...
  22. C

    23andMe testing looks like it will finally be completed soon. Tips on where to send the raw data?

    Do any of you smart people having a starting point for me for working with: homozygous C677T? homozygous VDR taq? heterozygous for: MTRR A66G MTRR K350A CBS C699T SHMT1 C1420T This is just doing the free genetic genie tool. Would something else be more likely to show SNPs that this tool...
  23. C

    Vaccine-triggered CFS linked to nasopharynx inflammation, and 81% cured or improved by treating this nasopharyngitis

    The niacin is still having an interesting effect, but I'm intrigued about the zinc. I am also impatient about finding Zinc Chloride.....so I will use my pill crusher on a zinc supplement I have for now (hopefully copper isn't bad for the nose since it is included). I happen to have a mg scale...
  24. C

    Viral entry into the brain through olfactory nerve (CNI)--latency in olfactory bulb?

    IIRC, Olfactory neurons are a bit unique in the CNS due to their capicity to regenerate. I believe it has do with the fact the the nerve is the most exposed part of the CNS to the external environment and subject to more damage than other components and thus the body evolved to try and...
  25. C

    23andMe testing looks like it will finally be completed soon. Tips on where to send the raw data?

    Cool I have "Dirty Genes" on both kindle and audio, but have not had the chance to listen to it yet. Gonna start tonight now that you just reminded me about it.
  26. C

    Viral entry into the brain through olfactory nerve (CNI)--latency in olfactory bulb?

    Same issue. Worse in the first 3 years probably than now. Dead skunks on the side of the road still smell like fresh ground coffee, though....lol. Also, I still cannot smell a gas leak. Then you read that the olfactory bulb has direct connections to things like the amygdala and the amygdala...
  27. C

    23andMe testing looks like it will finally be completed soon. Tips on where to send the raw data?

    Oops! maybe I should retitle that post..........................finished = completed
  28. C

    Viral entry into the brain through olfactory nerve (CNI)--latency in olfactory bulb?

    My illness first signs was a strange pain after exercise, deep in my right upper nasopharynx area. This became a cold/flu which settled in the chest for awhile and somewhere along the way ME/CFS began. My theory is that this is a brain problem in some form. Either through faulty information...
  29. C

    23andMe testing looks like it will finally be completed soon. Tips on where to send the raw data?

    What is the best thing out there? All I have really thought about is Stratagene but I know there are others. Pros? Cons?
  30. C

    Vaccine-triggered CFS linked to nasopharynx inflammation, and 81% cured or improved by treating this nasopharyngitis

    Thanks, I'll check online for it. May not need it if this currently developing situation turns out to be something. I just had this amazing reaction with a high dose of Niacin where my passages are completely opened and my nose running for the first time since I don't know when. :)