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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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Search results

  1. gm286

    Longitudinal Cytokine and Multi-Modal Health Data of an Extremely Severe ME/CFS Patient with HSD Reveals Insights into Immunopathology, and Disease

    My IL2R was considered "high" / scored for "high concentration" on an immune urinary analysis many years ago. Not sure if relevant but inserting it in here anyway. "CD4/CD25+" lymphocytes were measured at 1mm3 for a normal reference range of 52-255. Not sure what it means to have high IL2R but...
  2. gm286

    Hunter Hopkins

    I feel (with all honesty) like I wasted 1800$ or whatever high amount it was for nothing. I, again, honestly feel like his approach (Dr Hillman), his attention span, his *responsiveness* including the responsiveness of his two-person coordinating team were among the worst medical experiences I...
  3. gm286

    Abilify- Stanford Clinic Patients

    Short update to mention I am back on Abilify at a dose of 4-6mg per day. Weight gain is being offset by use of peptide tirzepatide (Mounjaro). So far I am regaining some of the beneficial effects without apparently feeling hungry and/or putting on weight. Will update within a few months if this...
  4. gm286

    Peptide treatment

    I’m using ARA-290 and TA-1 with middling results. Definitely like the combination and feel that ARA-290, even in small doses, is giving me more energy and making me less hungry (not sure why). But if I accumulate tasks and sustain a more difficult schedule, they are not as effective. Also using...
  5. gm286

    Peptides Poll

    I responded for both TA-1 and TB-500. Inconsistent or unclear, but when noticeable, rather positive results from both of these peptides for me.
  6. gm286

    The viral origin of myalgic encephalomyelitis/chronic fatigue syndrome (Hanson, 2023)

    @Forummember9922 if you ask me, the real benefits were from Interferon addressing the immune system. And that seems to be the central issue with unraveling ME/CFS: we shouldn’t be looking for an external culprit or a virus, but instead what within our immune system makeup is deficient and...
  7. gm286

    Neuropathy flare on antivirals?

    I get the exact same reaction / flare of neuropathy on herbal antivirals or antibiotics. Very weird.
  8. gm286

    Il-2 Receptors/CD25

    @wastwater I didn't even know it was possible to merely "receive" IL-2 administered as a kind of vaccine... Interesting. Wish it were easy to get a rheumatologist to prescribe!...
  9. gm286

    Hydrocortisone

    When I went from even just 5mg HC to 0, I was still dealing with symptoms for a month or two. I hope you can hang in there. I am now off completely after 4 years of prednisone and HC and could not be happier. By year 4, I was constantly bloated, sweating easily, and my skin was dry and thin. It...
  10. gm286

    Il-2 Receptors/CD25

    Mine are both low… IL-2 and CD4+CD25+ and lastly, the cytotoxic CD8+T cells. My CD4+CD25+ count was literally 1/mm3 out of the standard 52-255 range.
  11. gm286

    Rexulti and Me/Cfs?

    I mean at this point, next time I require using it, I’ll be opening a capsule and tapping a few small microparticles of it into water. A micro dose if there ever was one. Was on 1.5mg for two days. Then 3mg for 3 days. Then 4.5mg for a day. By days 5 and 6, I started bloating, huge increase of...
  12. gm286

    Rexulti and Me/Cfs?

    @jaybee00 yes, and usually that means expect similar results between them. I did not try Rexulti but I would if it came to that. Abilify and Vraylar gave me similar side effects (could not tolerate medications and began to inflate / bloat; there was also muscle weakness). However I credit...
  13. gm286

    Low CD3+CD8+CD57+ ? Senescent T8 cells?

    OP no longer seems to have an account...? I *also* have very low T8 senescent cells from a specific immunology lab done in France many years ago. My CD8 and CD57 cells are low as well, but the low T8 actually seems a lot more particular, not much info on that online. Wish we knew what it was...
  14. gm286

    Why i don't think there will be a cure for ME

    I don't share the pessimism because pessimism is absolutely useless when you have chronic fatigue and pain; ME/CFS or another variety thereof. The pessimism is built into the disease itself. No point in being redundant and announcing one's pessimism other than to communicate and connect with...
  15. gm286

    Level of Activity and Sleep

    @JasonPerth I’ve had the same problem ever since my ME/CFS began seventeen years ago — a very drawn out, DSPS-to-non-24 type circadian rhythm and it takes a whole lot to sleep early. I don’t naturally sleep early and don’t naturally get up early. If it was there before my ME, which it maybe was...
  16. gm286

    Abilify- Stanford Clinic Patients

    No, it was definitely more than that. There were completely unmanageable reactions. For example, I was starting to get a tardive dyskinesia-like symptom with my tongue. The weight thing was out of control — I could no longer put my clothes on without feeling like everything was tight. And the...
  17. gm286

    Abilify- Stanford Clinic Patients

    @hmnr asg your medication trials are strikingly similar to mine and what I’m contemplating doing soon. Retrialled LDA a few months ago and it was just not viable: it was abating symptoms and giving me more energy but also at 0.25mg making me gain weight / bloat. I was also sweating more on it...
  18. gm286

    Trouble swallowing (dysphagia) - neurological ?

    I was diagnosed with SFN (through a skin punch biopsy). I have peripheral neuropathy, nerve pain, and dysautonomic symptoms (Dr. Lapp at Hunter-Hopkins center checked for signs of orthostatic intolerance and found that upon promptly standing up from a supine position, my heart rate went up too...
  19. gm286

    Abilify- Stanford Clinic Patients

    I posted about some “vague” thoughts I had regarding why I think Abilify works. I am not on it any longer (once more) due to the unmanageable side effects (weight gain at even 0.25mg/ml). Not just weight gain — bloat, practically inflating around the midsection. It working / ceasing to work...
  20. gm286

    Methylene Blue -- The "Perfect Supplement" For ME/CFS (?)

    Have been trying MB for several weeks now. Just checking in to report a super rare side-effect of it causing sweet / fruity / maple syrupy like odor in my sweat + urine. This has not been reported anywhere else aside for a single other post on FB. I don't have MSUD (maple syrup urine disease --...
  21. gm286

    Metabolism, neurosteroids, ME/CFS

    I should start by saying that after relentlessly looking around and reading, I do not see any clear-cut consensus as to when and if it is “indicated” to supplement a small dose (say, 5mg per day, no more) of hydrocortisone for adrenal problems. The most logical thing would be to describe what...
  22. gm286

    Is your worst fatigue in the morning too?

    Also diagnosed with (severe obstructive) sleep apnea. Among my diagnoses that is the one I take the least seriously. I remember that short phase when the Abilify worked for the first time. I now no longer take it. But, the very first time, it literally pulled all my muscles and energy and mood...
  23. gm286

    Post-Exertional Symptom Exacerbation (PESE)

    I would have preferred “innervating” rather than “enervating” myself, but perhaps that is even weirder. I basically see this disease as something willing its way through the nerves, meaning using the nerves as the conduit of choice. The symptoms themselves rely on a nervous system “grammar,” I...
  24. gm286

    Post-Exertional Symptom Exacerbation (PESE)

    Unless I’m unaware, I don’t think the Multiple Sclerosis “attacks” have a label of their own aside for them being perceived as “attacks.” This is the closest analogy to the ME/CFS “flare” in my mind (see below for MS wiki page excerpt). Based on the below, and although the ME/CFS mechanism is...
  25. gm286

    I seem to be in remission (ME/CFS moderate since 2007)

    @Judee thanks for reaching out. Do you mind if I ask how much D you take per week?
  26. gm286

    Prusty talks about his upcoming research on a podcast

    This is bordering on being unwelcome and unnecessary. The label on a medication should not matter if it is actually doing something. Sorry for you if it has not.
  27. gm286

    PCP who will do teleheath and familiar with CFS?

    This is really helpful and very aligned with what I'm after, so I reached out. Fingers crossed.
  28. gm286

    PCP who will do teleheath and familiar with CFS?

    It seems that I may yet have some luck; apparently naturopathic doctors who practice "under" an M.D.'s license can prescribe. There seems to be some configuration like this set up at a specific clinic in Atlanta.
  29. gm286

    Abilify- Stanford Clinic Patients

    Short update to say I am back on Abilify after a year off. Conservative approach with one 0.25mg capsule per day. Appear to gain ever-so-slightly in weight, though perhaps this was expected. Immediately noticeable improvement in vitality and energy.
  30. gm286

    PCP who will do teleheath and familiar with CFS?

    I'm moving from Oregon to Georgia in two months due to my spouse accepting a job offer. Over here I had a professional, highly qualitative N.D. who helped me gain in functionality through dosage adjustment of LDN and through adding Abilify at a low dose. She exemplified care and...