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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. Jesse2233

    My Experience at the Stanford Genome Center and w/ Ron and Janet

    Ha difficult question, maybe a 7
  2. Jesse2233

    My Experience at the Stanford Genome Center and w/ Ron and Janet

    Thank you! You can read more of my treatment history here: https://forums.phoenixrising.me/index.php?threads/experimental-early-treatment-plan-ivig-mhbot-and-photopheresis.50260/
  3. Jesse2233

    My Experience at the Stanford Genome Center and w/ Ron and Janet

    I should clarify, we drove up on a Thursday, had the blood drawn on Friday, and then drove back down Saturday. They don't draw blood on the weekend
  4. Jesse2233

    My Experience at the Stanford Genome Center and w/ Ron and Janet

    Hey everyone, As promised, here's a synopsis of my time at Stanford. I'm sharing this to inform and inspire hope while also respecting certain aspects of confidentiality. ------------ I drove up last weekend with my buddy @used_to_race from Los Angeles to Palo Alto. We went to the Stanford...
  5. Jesse2233

    What does the electrical impedance of blood signify? (Stanford Research, O3 / ATP / Na+ / K+ / Cl-)

    Very interesting, thanks for sharing Sue! From the paper:
  6. Jesse2233

    What does the electrical impedance of blood signify? (Stanford Research, O3 / ATP / Na+ / K+ / Cl-)

    @Belbyr @raghav I'll make a separate post about it so that we don't take this thread off topic
  7. Jesse2233

    What does the electrical impedance of blood signify? (Stanford Research, O3 / ATP / Na+ / K+ / Cl-)

    Hey everyone, I spent the weekend up at Stanford talking to researchers, giving samples, as well as a good amount of time talking with Ron and Janet (a profound experience I will write about elsewhere). --------- One of the things discussed at Stanford and with Ron was the electrical...
  8. Jesse2233

    How to tell if an Autoimmune process is driven by B cells or T cells?

    I would think so with the caveat being there’s a lot about these treatments we don’t understand.
  9. Jesse2233

    How to tell if an Autoimmune process is driven by B cells or T cells?

    Trialing treatments... Prednisone, if you get better it's likely immune mediated Plasmapheresis, if you get better it's likely B-cell Photopheresis, if you get better it's likely T-cell
  10. Jesse2233

    Immunoadsorption to remove ß2 adrenergic receptor antibodies in CFS/ME.

    Not surprised at all. This should be first line therapy. Low risk and highly effective Great to see this paper finally published
  11. Jesse2233

    Exercise Cure for POTS

    I suspect it’s a case by case basis. Someone able to tolerate exercise would likely benefit from the increased testosterone which can help quell autoimmunity. Exercise also helps with perfusion, mitogenesis, and promotion of various neurological growth factors In terms of the physical effects...
  12. Jesse2233

    Exercise Cure for POTS

    That’s not what Levine’s studies show. It seems to help some post viral patients as well. The key appears to be recumbent exercise instead of the upright used in traditional GET programs
  13. Jesse2233

    Full Recovery of 27 Severe Mycotoxicosis Patients (O2 / FIR / Sups / Antifungal / AIET) + POLL

    Fair points @dreampop Even if the study is flawed it’s still suggestive of potential benefit. And there are studies showing benefit of the individual treatments used (eg FIR, HBOT, binders, AEIT) as well as clinical experience and anecdotal patient reports
  14. Jesse2233

    7 Day NAD+ Infusions (Severe ME/CFS Recovery, Neurological / Mitochondrial / Genetic Repair) + POLL

    My cost is $40 per infusion with insurance. I’m not sure which pharmacy they’re using but I can ask
  15. Jesse2233

    7 Day NAD+ Infusions (Severe ME/CFS Recovery, Neurological / Mitochondrial / Genetic Repair) + POLL

    Lol sure. I mean I feel increased subtle background energy that comes and goes
  16. Jesse2233

    Exercise Cure for POTS

    It seems exercise can greatly benefit POTS patients who can tolerate (although not necessarily cure it). The key differentiator between success and failure seems to be not having the co-morbid presence of a type of PEM which makes the patient permanently worse (eg severe ME)
  17. Jesse2233

    Full Recovery of 27 Severe Mycotoxicosis Patients (O2 / FIR / Sups / Antifungal / AIET) + POLL

    Yes I imagine results are quite variable based on patient profile and severity. Nonetheless even a bedbound patient might try the non-mobile elements (eg AIET, antifungals, O2)
  18. Jesse2233

    Full Recovery of 27 Severe Mycotoxicosis Patients (O2 / FIR / Sups / Antifungal / AIET) + POLL

    Tagging @Janet Dafoe (Rose49) as we've had some discussions about mold in Ron's research
  19. Jesse2233

    Full Recovery of 27 Severe Mycotoxicosis Patients (O2 / FIR / Sups / Antifungal / AIET) + POLL

    Some interesting patient testimonials on Yelp from the Dallas Environmental Health Center who likely used a protocol approximating the one in this study:
  20. Jesse2233

    Full Recovery of 27 Severe Mycotoxicosis Patients (O2 / FIR / Sups / Antifungal / AIET) + POLL

    Dr William J. Rea, M.D at the Dallas Environmental Health Center lead the study. Some background on him:
  21. Jesse2233

    Full Recovery of 27 Severe Mycotoxicosis Patients (O2 / FIR / Sups / Antifungal / AIET) + POLL

    Interesting study in "Toxicology and Industrial Health" from 2009. The study is unique in that a comprehensive protocol was used instead of just one intervention. This of course makes it hard to tease out key variables, but does show the potential benefit of a comprehensive approach. The...
  22. Jesse2233

    7 Day NAD+ Infusions (Severe ME/CFS Recovery, Neurological / Mitochondrial / Genetic Repair) + POLL

    Update: Had a horrible sore throat / malaise / sinus congestion / cytokine madness yesterday that kept me bedridden for most of the day (which is unusual for me). Woke up today with some residual malaise and congestion but also exceptional mental clarity, tendrils of energy, and no sore...
  23. Jesse2233

    7 Day NAD+ Infusions (Severe ME/CFS Recovery, Neurological / Mitochondrial / Genetic Repair) + POLL

    Yea that’s what I’m thinking Could also be NAD+ acting as a immune signal for T cell activation: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2096762/ Gonna let my immune system handle this before starting again
  24. Jesse2233

    7 Day NAD+ Infusions (Severe ME/CFS Recovery, Neurological / Mitochondrial / Genetic Repair) + POLL

    Did 250mg of NAD today with Meyers and it immediately triggered a sore throat... go figure
  25. Jesse2233

    7 Day NAD+ Infusions (Severe ME/CFS Recovery, Neurological / Mitochondrial / Genetic Repair) + POLL

    PM me and I’ll share my insurance
  26. Jesse2233

    7 Day NAD+ Infusions (Severe ME/CFS Recovery, Neurological / Mitochondrial / Genetic Repair) + POLL

    @junkcrap50 great compilation of resources! What are your thoughts / overall impression of NAD+ IV therapy after reading everything?
  27. Jesse2233

    7 Day NAD+ Infusions (Severe ME/CFS Recovery, Neurological / Mitochondrial / Genetic Repair) + POLL

    I’m going to a clinic that does various IV therapies. Luckily my insurance will cover
  28. Jesse2233

    7 Day NAD+ Infusions (Severe ME/CFS Recovery, Neurological / Mitochondrial / Genetic Repair) + POLL

    I will be starting a series of NAD+ infusions with Meyers and aminos Monday! Will keep everyone posted
  29. Jesse2233

    7 Day NAD+ Infusions (Severe ME/CFS Recovery, Neurological / Mitochondrial / Genetic Repair) + POLL

    This is really a philosophical question but I often wonder what’s more likely to be primary... - A chronic infection that lucked out in establishing a foothold in a healthy person - A runaway immune system that can’t calm down - A vulnerable energy production system that gets tipped into...
  30. Jesse2233

    7 Day NAD+ Infusions (Severe ME/CFS Recovery, Neurological / Mitochondrial / Genetic Repair) + POLL

    Excellent point. Mito dysfunction is not a monolithic issue even if it results in a systemic set of common issues. The question would then be “what kind of mito issues is NAD+ best suited to and which are better served with PC, immunotherapy, carnitine, or CoQ10?” I still have a hunch NAD+’s...