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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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  1. AFCFS

    Cobalamin deficiency results in severe metabolic disorder of serine and threonine

    I think you are right. It is a bit interesting though that the B12 help adjust their metabolism (per the article), but may also be kind of an ancillary aid if they are low/deficient (per the other posting).
  2. AFCFS

    How do you feel after you eat?

    I would often get bad feelings after a high-carb intake (and also was never really full, but felt bloated); like I had to lay down as if an overstuffed bear getting ready for hibernation. I did find that very-low carb and small quantities have helped a lot. For instance; a few bites of cheese...
  3. AFCFS

    Dark Chocolate and CFS Study

    I found this interesting: Consumption of cocoa flavanols results in an acute improvement in visual and cognitive functions. An then this: Cocoa as an antioxidant In case anyone was looking at how to get 720 mg of CF, may want to look here for starters: Hershey Center for Health & Nutrition...
  4. AFCFS

    FDA should give CFS patients access to Ampligen! --Online Petition

    maybe could merge this with: FDA should give CFS patients access to Ampligen! --Online Petition (http://forums.phoenixrising.me/index.php?threads/fda-should-give-cfs-patients-access-to-ampligen-online-petition.21099/#post-320762)
  5. AFCFS

    Dark Chocolate and CFS Study

    Chocolate Consumption, Cognitive Function, and Nobel Laureates
  6. AFCFS

    What is a Realistic Upper Limit for Red Blood Cell Folate?

    You think that would be a simple question.:eek: Medscape Reference Folate (Folic Acid), gives this Reference Range: Adults: 140-628 ng/mL, or 317-1422 nmol/L. Apparently there is some debate about the analysis, as noted in A Practical Approach to Red Blood Cell Folate Analysis. Although no...
  7. AFCFS

    Cobalamin deficiency results in severe metabolic disorder of serine and threonine

    Not sure if this helps to answer your question. There are many "caveats" to all this; basically just an interpretative overview, and needed to string together a few sources to show the B12 as a co-factor for the BCAAs that seem to be indicated if Low Threonine/Low Serine. (not all formatting is...
  8. AFCFS

    Phoenix Rising Board Statement Re: Cort Johnson’s Announcement

    I see your point. I am thinking that maybe a way to dispel some of the concern would simply be to have the blogs/articles well cited. Most people exhibit a bias, even though they may not intend to. When we write about topics we tend to highlight some things and downplay others. It is quite...
  9. AFCFS

    Dark Chocolate and CFS Study

    I think the positive benefit may be due to the histamine released by chocolate. Of course, many people also have histamine problems or maybe histamine intolerant, but it can do many amazing things. Histamine Rich Foods Take a look at the list of histamine rich foods presented in this article...
  10. AFCFS

    Toxic Magnesium Oil

    I have had great results with magnesium, as well. This thread helped to refresh an interest in knowing more about it. I think the following may help to remind us of the complexity of taking supplements, in this case magnesium...
  11. AFCFS

    Why The FDA Had the Ampligen Meeting

    "Why the FDA Had the Ampligen Meeting" "Why Climb a Mountain" ------------------------------------------------------------- Because It's There? - It sound more daring and romantic from the mountain climbing perspective, but also makes sense from a bureaucratic and controlling perspective.
  12. AFCFS

    Benzos for Chronic Fatigue Syndrome? The Klonopin/Benzodiazepine Survey Results

    If people were able to ascertain a difference in the barometric pressure and there was some sense of polling criteria in place of "Fishing Trends," it might make for a useful chart. World Health Organization: International travel and health E.g. So maybe replace "Fish will tend become less...
  13. AFCFS

    Vitamin C Dosing and Megadosing

    From medicinenet.com
  14. AFCFS

    Distinct Cerebrospinal Fluid Proteomes Differentiate Post-Treatment Lyme Disease from Chronic Fatigu

    Currently trying to rule that in or out; I think the melatonin may have a small indicative role, but will not likely be the de-facto standard. I think it is likely a concomitant finding. Too many other things where others respond to melatonin, like jet lag. Melatonin for the prevention and...
  15. AFCFS

    Distinct Cerebrospinal Fluid Proteomes Differentiate Post-Treatment Lyme Disease from Chronic Fatigu

    Well, the whole thing is very interesting. I think the issue of melatonin may lend to itself as good bio-marker, but is likely broader than Lyme disease: Neurobiology of circadian systems. For what is worth, melatonin works great for me, 6 mg at night.
  16. AFCFS

    Dr. Chia's treatments

    There is a some pretty good information on a "Chia" search of this site. He seems convincing in his YouTube presence, would like to hear of clinical outcomes. In a very general comment, I at least like the fact that he defers much of the needed research to people who pursue such things, at one...
  17. AFCFS

    Feel better on Prednisone?

    Yea, the charts are useful but they also make things look like a nice linear function, which is not the case. After reading more about this, I did find (http://www.lef.org/magazine/mag2004/jun2004_report_preg_01.htm): So, maybe in your case, the Pregnenolone is changing into progesterone then...
  18. AFCFS

    Benzos for Chronic Fatigue Syndrome? The Klonopin/Benzodiazepine Survey Results

    Nielk - thanks, yes, I do have a BP cuff. My BP and HB had come down while in the ER, not to where they would most liked to have bee but in a safe range. Also, the ER doc wanted me to do followup with a regular doc this week. I think one problem for me, as my body has been waking up from the...
  19. AFCFS

    Feel better on Prednisone?

    Much more, at the link, but here is an excerpt from the link Adrenal Fatigue and Hormone Therapy: So, if one can forgive the author from using the term "Adrenal Fatigue" there is obviously some complexity in here, and not sure exactly how it is to be dealt with. I would not mind having my doc...
  20. AFCFS

    Feel better on Prednisone?

    (from the site: Adrenal Fatigue and Hormone Therapy) Arrgh! - I am wondering if one needs cortisol, if could just take the Pregnenolone? I had one doc tell me to take Pregnenolone and DHEA. On a blood test, Pregnenolone was in range but low, and DHEA was low, mid range. Then another doc told...
  21. AFCFS

    Has anyone used L glutamine to help with blood sugar issues?

    I also struggle with blood sugars; I found low carb lifestyle works best for me at this point. I did try L-glutamine at one time and all I can say is that it made me feel "odd." I have had benefit with chromium. Can see this thread: Chromium Picolinate anyone...
  22. AFCFS

    Sore throat, face and neck

    Seems like you have been through a lot. Without knowing the details, it would seem that the doc who did your first eval and/or surgery would be the best place to start, but I get the idea that you may have already done that? I have heard that if the one side was found cancerous, they would...
  23. AFCFS

    Anyone on this site a patient of Dr. Paul Cheney in Ashville, NC?

    I am glad you gained benefit from him. It is beyond my speculation as to why he would have to loose his house to foreclosure or that he cannot afford to retire. If he is making $3000 per patient three times a week, he still would seem to be at close to $450,000 per year. Maybe he just needs a...
  24. AFCFS

    Benzos for Chronic Fatigue Syndrome? The Klonopin/Benzodiazepine Survey Results

    I am in that position to side with everyone who has had benefit (as I initially did) but bear forewarning to all those that may consider it for long term use or are trying to get off of it. I am currently at about a month off Klonopin, with about a three month taper from 1 mg to 0 mg, after...
  25. AFCFS

    T3 dosing w/other supplements

    No doubt, I just had some blood work show cortisol and DHEA-Sulfate to be in range, but with a high Reverse T-3, Serum and then a low ACTH, plasma. Am waiting to see if an initial recommendation of perhaps seeking an endocrinologist for cortisol supplementation is viable choice.
  26. AFCFS

    Dr. Charles Lapp

    I eventually ended up seeing a one that is willing to look at things in a very holistic, but seemingly "not nutty" way. I have only seen this one once and am waiting for a follow-up on testing. My insurance deductible had been met this year, so testing was more financially viable to me. But was...
  27. AFCFS

    Methylation started. What are the essential blood tests one should have?

    I think you may have entered the arena of uncertainty that I am guessing many have encountered. If anyone has pat answers to the questions, that would be much appreciated (think it has been asked in one form or another here and there, but this is also a good place for the query). Just some...
  28. AFCFS

    Methylation started. What are the essential blood tests one should have?

    I had a doc recognize this as well. Per @Xara's question, may help to look into it the Methylmalonic Acid test:
  29. AFCFS

    No serological evidence for a role of HHV-6 infection in chronic fatigue syndrome ?!

    Thanks, sometimes if we hear the record enough it may sink in :). I did have the % CD8-/CD57+ Lymphs and Abs. CD8-CD57+ which were both relatively low in the reference interval (think this is in line with what was being referenced. Lacking the CMV and the EBV in any signifcant results, just...
  30. AFCFS

    No serological evidence for a role of HHV-6 infection in chronic fatigue syndrome ?!

    I will need to ask my doc this, but am interested in knowing how others may have had LabCorp HHV6 interpreted with the HHV 6 IgG Antibodies with a HIGH index score, where the ranges are identified as: Negative < 0.76 Equivocal 0.76 - 0.99 Positive > 0.99 And HHV 6 IgM is Negative: Negative <...