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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. halcyon

    Late pandemic immune dysregulation? Opportunistic infections and unexplained pediatric hepatitis

    I think what changed was the public health strategy. Once the vaccines had been out for a few months, everybody switched to “let er rip”, children and the immunodeficient be damned. I know someone who finally caught COVID in this latest wave. They then caught two further viral infections back...
  2. halcyon

    Oxymatrine with Grave's Disease

    What type and dose of fish oils? Some of these are immunostimulatory as well (and olive leaf extract is in Equilibrant), though it would be hard to quantify how much in relation to Equilibrant. "Pharmacologic" doses of CoQ10 are around 200-400mg and up, I believe. 400mg is used for migraine...
  3. halcyon

    Seeing Dr John Chia on Friday, What Questions Should I Ask?

    My recollection is that he became well enough to return to work, though I don't know any specifics of what helped him get there. I'm unsure if he does telemedicine for the first appointment, but I have been doing telemedicine with him for years after a first visit in person. Prior to the...
  4. halcyon

    Much worse after short course of Equilibrant

    I get by, with trigger avoidance and premedication with cromolyn and flavonoids. It's possible that Equilibrant might have been involved, but I did have symptoms of mast cell activation months prior to first starting it. I attribute it more acutely to possibly a double hit of medications...
  5. halcyon

    Please help me find this thread/article

    I doubt that's correct. T cells and B cells differentiate from the same lymphoid progenitor line, they're morphologically indistinguishable without further staining (though this isn't necessarily proof of evolutionary relation, and their differentiation is way more complex than the picture...
  6. halcyon

    Please help me find this thread/article

    It’s arbitrary and largely wrong to draw to draw silos around these, immunoglobulin synthesis is heavily reliant on T cells, by way of antigen presentation to B cells. It’s called a system because it’s a sum of individual parts all working together, with possibly an unknowable amount of...
  7. halcyon

    Much worse after short course of Equilibrant

    Unfortunately I had to eventually stop taking it. About 3 years into my illness (I don’t know if this relates to the findings of Lipkin/Hornig or was just a coincidence) I suddenly went from moderate to severe. A few months later I then developed MCAS and had to stop taking it. I attempted...
  8. halcyon

    Any Ampligen updates?

    Dr. Peterson’s clinic has been one of the main study sites for Ampligen clinical trials for many years. It looks like he was possibly the first clinician to use it, back in 1988. I don’t recall which documentary or news piece it was, but I definitely recall seeing a video that spoke with one of...
  9. halcyon

    New Systrom Study: PPAR Delta for ME/CFS

    So if I’m understanding correctly, the purpose of the drug is to push beta-oxidation; how will this help if the underlying issue in ME is inadequate oxygen delivery to cells?
  10. halcyon

    Relevance of CellTrend results for treatment

    There is an unfortunate third option: non-specific binding. The putative autoantibodies may not be anything at all and instead could just be promiscuous antibodies having fun in an ELISA well, a phenomenon made more likely by the presence of increased immunoglobulin concentration, or blood that...
  11. halcyon

    $2M NIH Grant Will Help Develop a New Defense Against Viral ‘Hijackers’ (2022)

    This researcher appears to have a specific interest in the way that enteroviruses hijack and utilize phospholipids in the viral replication process. This isn't the only lipid pathway that enteroviruses interfere with; they are also known to hijack and alter cell handling of LDL cholesterol as...
  12. halcyon

    $2M NIH Grant Will Help Develop a New Defense Against Viral ‘Hijackers’ (2022)

    $2M NIH Grant Will Help Develop a New Defense Against Viral ‘Hijackers’
  13. halcyon

    What Dysautonomia Patients Should Know About Antiphospholipid Syndrome

    This finding failed replication in a more recent study, finding no difference in anti-cardiolipin antibodies between patients and controls (Nilsson et al., 2020). Curiously, I tested positive for anti-cardiolipin IgM antibodies in 2019, but when tested again this year I am no longer positive.
  14. halcyon

    BC-007: Successful drug against Autoantibodies helps with long COVID

    Good point, seems entirely possible. Oxidative stress and inflammation in general could simply be the answer, as RBCs soak a lot of oxidative stress from the body and don't have the capability to self repair much. Thank you, it looks familiar but I'll check it out again. I should say also that...
  15. halcyon

    BC-007: Successful drug against Autoantibodies helps with long COVID

    To my knowledge, the only commercially available autoantibody tests here are for demonstrably pathogenic autoantibodies. I don't believe that anyone has demonstrated pathogenicity in humans for the autoantibodies tested for in Germany by CellTrend, for example.
  16. halcyon

    BC-007: Successful drug against Autoantibodies helps with long COVID

    Has any further information come to light about specifically which autoantibodies are involved in causing the poor RBC deformability in long COVID? Are they for sure a GPCR autoantibody, or could it be another target? In order to function correctly, RBCs need to maintain a certain asymmetrical...
  17. halcyon

    Case Report. Voltage gated potassium channels ANA-dysautonomia-IVIG

    I'm chronically infected with echovirus 30. I'm currently waiting for my results from the Mayo DYS2 and PAVAL autoantibody panels. I'm hoping, if positive for something, that this will be the evidence I need in order to receive IVIG, but I'm not holding my breath as it can be quite a fight from...
  18. halcyon

    Case Report. Voltage gated potassium channels ANA-dysautonomia-IVIG

    Thanks for posting this @ChookityPop and thanks for bumping the thread @Zebra as I had missed it the first time around. The focus on the double-negative VGKC antibodies was a bit confusing, but is also burying the lede a bit; the important part to me is that IVIG caused significant clinical...
  19. halcyon

    Metabolomic Evidence for Peroxisomal Dysfunction and Dysregulation of the CDP-Choline Pathway in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

    I was just looking into palmitoylethanolamide (for mast cell inhibition), which is an agonist of the PPAR-α receptor. Seeing that quickly reminded me of this study pre-print. Revisiting it now after recently reading about red blood cells, the decreased phosphatidylcholine finding in the study...
  20. halcyon

    Worrisome results - anyone has very elevated albumin/creatine ratio and TGF-beta 1 ?

    Personally, I've never been able to get this test ordered for me. Generally, several studies have shown elevated TGF beta in ME patients; 5 out of eight studies according to a 2015 review (Blundell et al., 2015), and more studies have looked at it since (Montoya et al., 2017). One large caveat...
  21. halcyon

    Endothelial Dysfunction in ME

    This is an interesting function of RBCs that I had never considered, but just came across recently looking at Ross Richards' work. In addition to their main function, RBCs can effectively be thought of as a disposable extra tissue sink for free radicals in order to draw damage away from other...
  22. halcyon

    Poll: When do you brutally honestly think there will be a cure for ME?

    Other than dorsal root ganglionitis, muscle composition changes, and loss of white/grey matter and wiring changes in the brain, no there is no frank ongoing tissue damage in ME that would be comparable to MS that I'm aware of. UBOs in ME MRI scans were noted before in some cases, as well as...
  23. halcyon

    Cardiopulmonary, metabolic, and perceptual responses during exercise in ME/CFS: A Multi-site Clinical Assessment of ME/CFS sub-study (Cook et al 2022)

    Specifically what I was referring to was those of us with hyperadrenergic POTS, which causes a significant increase in blood pressure (i.e., vasoconstriction) and plasma norepinephrine. Also, and I'm not sure if/how these might map to orthostatic tachycardia positive ME cases, but there are...
  24. halcyon

    Poll: When do you brutally honestly think there will be a cure for ME?

    This part has been really frustrating for me because it has shown that effective targeted antivirals (such as for say, enteroviruses, that may be the cause of many cases of ME) aren't science fiction, but are rather just a hostage of capitalistic market forces. With a large enough market...
  25. halcyon

    Cardiopulmonary, metabolic, and perceptual responses during exercise in ME/CFS: A Multi-site Clinical Assessment of ME/CFS sub-study (Cook et al 2022)

    I've been thinking a bit about the abnormal RBC hypothesis recently, and it seems like results like this would fit right in. If poorly deformable RBCs aren't able to pass through capillaries efficiently, and proper gas exchange in the lungs requires proper RBC flow through the pulmonary...
  26. halcyon

    Hospital experiences?

    I've been in the ER countless times, and admitted on two occasions. This is in the US (which is sounds like you're not), so perhaps not helpful. I would not call them good experiences, but they were necessary. If admitted, you will be constantly disturbed at a minimum once an hour, and if you...
  27. halcyon

    Proline Inhibits Mitochondria

    I would argue that the link may have more to do with proline's ability to agonize NMDA receptors. One of my top suspects for (some) post exertional symptoms in ME is quinolinic acid, another (potent) NMDA agonist.
  28. halcyon

    Members Experiences with Nortriptylene

    Bummer. There is an interesting compound I've been reading about recently called agmatine. There is a bit of discussion about it here and there on the forums. There's some indication that it might be able to help with certain types of pain. I believe it can also potentiate the effects of...
  29. halcyon

    Members Experiences with Nortriptylene

    On the CellTrend test I assume? Do you have dysautonomia like POTS or NMH? Does your blood pressure usually run normal? This gets kind of confusing because it depends on where we're talking about. I believe α1 receptors generally control vasoconstriction, so perhaps if you antagonize those...
  30. halcyon

    Members Experiences with Nortriptylene

    That all sounds about right; it's a powerful NET inhibitor so increases sympathetic nervous system tone, and it's also anticholinergic which makes things even worse in those areas. I was going to say that 30mg sounds like a high dose, but it looks like they go quite a bit higher for pain. I...