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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. K

    Where to purchase GcMAF

    Check youtube for videos with the late Dr. Bradstreet and Dr. Marco R. discussing Bravo (GCMAF) yogurt. The Italian Dr (Marco) is pretty fascinating - listen to him discuss how the yogurt works. Has anyone else here tried this stuff yet?
  2. K

    Where to purchase GcMAF

    I ordered some here - haven't made it yet: http://www.marsvenus.com/p/gcmaf-bravo-probiotic-yogurt
  3. K

    Has anyone cured lifelong anxiety depression and ocd

    Hi @anxiousguy - thought I'd check in and see how inositol has been working for you. Ive been trying low dose inositol for a week now and have noticed I can get SO ANGRY. This is unusual for me...totally. anyone else experience this??
  4. K

    Has anyone cured lifelong anxiety depression and ocd

    P.s. came across a review on amazon for the below item - not endorsing this brand, etc., but merely providing it so you can read reviews. One parent addresses it having helped his sons' anxiety and OCD immensely. Parent also lists dosing and mentions upset stomach for the first week or two. Fyi...
  5. K

    Has anyone cured lifelong anxiety depression and ocd

    @anxiousguy tks for the article - please let us know how it goes. Wonder if taking with food would help with the upset stomach? I've been just dumping a tablespoon or so in my morning coffee...no upset stomach so far. :)
  6. K

    Has anyone cured lifelong anxiety depression and ocd

    Thanks @Hip - I have come across that thread of yours many times (thank you for putting that info out there!). I did try NAG, but didn't notice any improvement. I at one point tried curcumin too, but didn't notice anything positive from that either. I do believe I tend to have slightly better...
  7. K

    Has anyone cured lifelong anxiety depression and ocd

    I have pretty severe anxiety/ocd too - constant worry/rumination kind (pure ocd). I ordered inositol from bulk supplements. How much are you all taking... @Hip, Do you use inositol?
  8. K

    Regular Enteroviruses and Non-Cytopathic Enteroviruses

    What role do cytokines play into these conditions? If viruses can trigger/activate cytokines, and if the host has an excessive cytokine response, could that manifest itself in different ways in different people (ME, CFS, OCD, etc.)? Is the issue the hosts' cytokine response? Just thinking from...
  9. K

    OCD due to PANS (high coxsackie, mycoplasma, etc.) rx VALTREX

    @halcyon good to know - thank you! Yep, ANA and Thyroid antibody tests both came back negative. Have you had labs checked since starting it? How do you know it's helping? Not trying to be nosy - just wondering what to expect. I took Valtrex for about 5 days and stopped as I felt an increase in...
  10. K

    OCD due to PANS (high coxsackie, mycoplasma, etc.) rx VALTREX

    Thanks @halcyon - I would like to consult with Dr Chia at some point...am in the Midwest and can't afford a visit to him at the moment. Wonder if equilibrant is something I should try. Have u used it? Just curious.
  11. K

    OCD due to PANS (high coxsackie, mycoplasma, etc.) rx VALTREX

    Have an update from some additional labs... I have high EBV, and high HHV 6 too. Can Dr Chia handle this combination of high coxsackie, mycoplasma pneumoniae, EBV, and HHV 6? What about Dr T instead? EBV Ab VCA, IgG = 54.8 High (range 0-17.9) HHV 6 IgG antibodies = 7.78 High (range 0-0.99)
  12. K

    OCD due to PANS (high coxsackie, mycoplasma, etc.) rx VALTREX

    Thanks halcyon! Yes, I'm in the US. I didn't realize that about enterovirus and anxiety/psych problems, but that makes perfect sense. Yes, the anxiety/OCD did start a few weeks after becoming very sick (it was most likely either mono or walking pneumonia), and the walk-in clinic didn't help much...
  13. K

    OCD due to PANS (high coxsackie, mycoplasma, etc.) rx VALTREX

    Taking Valtrex for the following results I received...suffering from severe anxiety/OCD. Can anyone relate to the following results? And has Valtrex helped? Coxsackie A IgG/IgM Antibody Coxsackie A7 IgG 1:800 High titer Neg:<1:100 Coxsackie A9 IgG 1:1600 High titer Neg:<1:100 Coxsackie...
  14. K

    Neopterin/Biopterin & Organix comp results (*High Biopterin/High Glucarate*)

    Thank you August59! I believe ARNP stands for American Registered Nurse Practitioner. :)
  15. K

    Neopterin/Biopterin & Organix comp results (*High Biopterin/High Glucarate*)

    Have any of you had neopterin/biopterin levels tested? Just got my results back: Neopterin 0.26 (0.15 - 0.79) Biopterin 0.21 (0.04 - 0.35) Neopterin/Biopterin ratio 1.24 (0.04 - 8.67) My test results didn't contain any interpretation/guidance, and my ARNP knows little about pterins. From what...
  16. K

    G.I Results Panel

    I would love to know the answer to this as well - I have mutations that all point to low tetrahydrofolate and am looking into supplementing directly with BH4. My symptoms are severe anxiety/OCD. BH4 may not be a cure, but possibly will help with any underlying BH4 process issue?
  17. K

    Is there BH4 supplement/medicine?

    @aquariusgirl are you still taking BH4? Curious if u are, how much, what r the benefits. If not, why not, etc. :)
  18. K

    Is there BH4 supplement/medicine?

    Any sources I've come across, in postings, for purchasing BH4 are either broken web links, or the product is no longer available. Anyone know of somewhere the purchase this? I've even contacted Pharmaworld in Zurich - they can't sell it either. Before this was so scarce, did anyone try this for...
  19. K

    X-Men Mutant Protocols: A1298C Homozygous

    Forgot to mention that I've been taking Seriphos (amazon) since receiving my wacky cortisol results. It has definitely calmed me to an extent, and I believe it's doing 'something', lol, though I'm not familiar with its exact biochemical function. HTH!
  20. K

    X-Men Mutant Protocols: A1298C Homozygous

    Have u had cortisol levels tested? Before I did genetic testing (a1298 heterozygous), I met with a naturopath for diff testing. Results re cortisol came back showing a remarkable rise in cortisol during the night, peaking at about 7am. She asked if I frequently woke up in the middle of the...
  21. K

    Looked up top SNP's related to anxiety/OCD - hth!

    thank you Valentijn - those are the OCD/anx related SNPs listed in the research cited. I then looked up each within my data and appended ea with my result. What I'm trying to understand is which type poses the greater risk...for example on the first SNP, is the risk greater in being homozygous...
  22. K

    Looked up top SNP's related to anxiety/OCD - hth!

    While this is not directly related to ME/CSF, I know some here and/or their loved ones suffer from anxiety/OCD as well (including yours truly), so I thought I'd share a PDF/presentation I stumbled upon that provides insights into the neurobiology of OCD via imaging and genetics. Source to the...
  23. K

    Anxiety disorder - can 23andme results guide treatment strategy?

    Valentijn u r awesome. Thank you so much. I'd like to think i can interpret this on my own, but I start to second guess myself, esp when I find contradictory information re. supplementation (i.e., do I take b6 or not?, etc.). Good to have ur input! I did look at your program on SF, but am...
  24. K

    Anxiety disorder - can 23andme results guide treatment strategy?

    Valentijn - any chance you would be willing to comment on my results/question? Any post I've come across where you've provided input makes me hopeful that you'll provide input on mine too. :)
  25. K

    Anxiety disorder - can 23andme results guide treatment strategy?

    Glad to hear u didn't have lyme, and also that ur anxiety is under control atm. I understand about not wanting to be on psych meds, but it is what it is. I don't want to rely on rx either, but I more so want to feel better. So I'll do what I have to do. :) Did u test thru 23andme? Curious to...
  26. K

    With these results, what is the best action for energy?

    Hi GypsieA, I'm not familiar enough with genetic results to offer solid input re ur test results. What I can tell u from experience though, is that getting on Solgar gentle iron 25mg, and ATP (white bottle w blue text on bottle - can get via amazon), helped increase my energy for sure! This was...
  27. K

    Anxiety disorder - can 23andme results guide treatment strategy?

    Hi vamah, nice to meet u - sorry to hear ur dealing with the same thing. Hopefully we'll get some insight here. :) No, never tested for lyme - how about you? What prompts one to test for that (besides having a tick, etc.)? Are there other ways to get it?
  28. K

    Anxiety disorder - can 23andme results guide treatment strategy?

    Hi all, I'm new here (hello!) and am so glad to find a place with so many people that are knowledgeable about genetic testing, results, treatment protocol, etc. I have been dealing with an anxiety disorder (pure-O form of OCD; unrelenting anxiety) for about 13 years now. I received results back...
  29. K

    CBS a360 - reason to stop MTHFR supplements ?

    I'm homozygous for CBS a360 as well and have been wondering the same thing! And the information from yasko et al regarding B6 supplementation seems to be all over the place. Very confusing.