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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. mellster

    Breathing Problems In ME/CFS

    It wasn't the main issue, also it wasn't shortness of breath exactly, more like intense airhunger (my breathing was actually slowed down I believe). I was diagnosed with CFS (not ME), FM, PVFS and such but nobody really figured it out. Chances are good though that it was dormant and an infection...
  2. mellster

    Breathing Problems In ME/CFS

    @Gingergrrl Hey, I cannot make a recommendation for or against the nebulization as I did not do it long enough before improving back to fully normal within the roughly 5 years this whole ordeal lasted, but back then it seemed to help and I didn't notice any side-effects. I still take liposomal...
  3. mellster

    Article: Light on ME/CFS III: A Different Herpes Virus for CFS? - Varicella-Zoster, Shingles and ME/

    Yeah, but going by Occam's razor chances are very slim (not impossible) that a herpes virus is causing problems then. Plus if it starts multiplying it will eventually be detected and one will likely have an acute episode. They are known to evade and lie dormant.
  4. mellster

    The Undetectable Infection

    I disagree on this. The vast majority of patients with all these overlapping conditions have either recurrent, prolonged or chronically swollen lymph nodes and/or other tissue abnormalities. Patients are literally begging for tissue exams, and all they are getting are recurrent serum studies...
  5. mellster

    CFS is a Bacterial Infection

    @knackers323 Unfortunately we haven't heard from him in a while. He used to be on PR here on this forum but got banned because he was very direct and - some would say - opinionated. I think he posted under Ai-yai. IMO him and Elph have the most compelling theory. If I still needed treatment I'd...
  6. mellster

    Do MEs cause CFS?

    http://www.sciencedaily.com/releases/2008/12/081211081446.htm I don't know if there are any other or more recent studies on this.
  7. mellster

    Do MEs cause CFS?

    Yeah, exertion in general is not easy on the gut, if it's sensitive or leaky even more-so. But in turn it reduces your appetite and eating frequency, which I think is key to treating leaky gut as well as SIBO. Eat 2-3 times a day, not more and allow 5-7 hours (or more) in between meals for the...
  8. mellster

    Do MEs cause CFS?

    Hmm, could it be interpreted that there is an initial strong response with much release of Interferon-gamma, but as the condition progresses, that immune response weakens?
  9. mellster

    Do MEs cause CFS?

    Interesting write-up, though I could not categorize my 3-4 year stint in any of those. ME5 sounds interesting, but most patients exhibit low NK cell numbers/activity and thus very likely low gamma interferon, which may also explain problems with degranulization in lymph nodes and other tissue...
  10. mellster

    Who tried immunosupressive treatment/drugs?

    I'd echo that and would be highly skeptical of immunosuppressants, esp. those which are not selective.
  11. mellster

    Upcoming appt at Open Medicine Institute!

    Sorry, gingergrrl, that's not what I wanted to say/cause. I actually was suggesting to circle in on EBV/mono as this seemed the most prevalent/significant finding and was similar to my results back then. Also, I just wanted to point out some herbs/mushrooms that helped with the same. I'm sure...
  12. mellster

    Upcoming appt at Open Medicine Institute!

    Ok I stand corrected about the initial infection (CMV is quoted anywhere from 40%-100%), but the point is that high/significant serum positivity for antibodies long after infection (antibodies and PCR) seems to be more common for EBV. And if I read correctly both CMV and HHV6 had been negative...
  13. mellster

    Upcoming appt at Open Medicine Institute!

    That's not accurate I think. CMV is very rare compared to EBV, so is HHV-6. Active VZV usually manifests in shingles or shingles-like symptoms and there is not a lot of info on other chronic side-effects of VZV (aside from shingles) that I have found digging through the research, but I agree...
  14. mellster

    Upcoming appt at Open Medicine Institute!

    I don't see anything standing out from the blood results except for EBV and NK function, which often seem to go hand in hand. If you had chickenpox, you have VZV, everybody has HSV1. I'd be interested in the CPN retests as this can cause issues with breathing, if it's positive you could take NAC...
  15. mellster

    Endurance Exercise and ME/CFS -- Individual Experiences

    Thanks, I am not doing this for speed (unlike the 5Ks or 10Ks) and am willing to quit if it seems too much. One thing to consider though is that there have been articles run in newspapers of miraculous healings of former CFS/ME patients now running regular marathons (I think it was a woman in...
  16. mellster

    Endurance Exercise and ME/CFS -- Individual Experiences

    @Gingergrrl43 I did take and still take a whole range of anti-microbial and immune-stimulating supplements (such as cordyceps, paw-paw, graviola, ahcc, IP6 only to name a few) and I did MAF314/GCMAF for 1 and a half years. I was never completely disabled, but briefly partially housebound (I was...
  17. mellster

    I dont get Fever

    Yes I do remember feeling hot and flushing back then all the time but my body temp was actually low. WRT Mono, there is some research on EBV weakening/evading the immune system. It's unclear if my trigger was Mono, but it is very likely since I showed high antibodies years later.
  18. mellster

    I dont get Fever

    I always used to get a good fever every 1-2 years or so when something was going around, even when others didn't - or when they had low-grade fever, mine was always higher. Then when CFS started with the trigger infection, one notable aspect was that I had no fever at all to match these...
  19. mellster

    CFS is a metabolic condition!

    Almost, the first part is right, but if there are no to little antibodies they claim there is no infection :)
  20. mellster

    CFS is a metabolic condition!

    MeSci, I think there doesn't need to be a disagreement regarding the definition of infection. Out of the several types you cited, the opportunistic infection fits very well. Routine lab tests do not test for opportunistic bacteria, and even if they are detected, they are not mentioned in the...
  21. mellster

    CFS is a metabolic condition!

    Agreed. Also if your gut is in disorder/imbalance, you likely have a muted immune response and interest in and diagnosis of gut dysbiosis has been certainly rising fast.
  22. mellster

    CFS is a metabolic condition!

    I'm certainly not an expert, but I'd wager that the vast majority of viruses caught are being expelled completely (e.g. rhino viruses, flu) while the group of herpes viruses and enteroviruses are different (but usually kept in check). While it is totally possible that they have a hand in it or...
  23. mellster

    CFS is a metabolic condition!

    Not disputing the viral and other triggers, but a virus usually either kills the host or gets entirely defeated by the body and in most cases completely expelled. There are exceptions such as HIV which mostly progresses slowly or some that stay latent and can flare up such as various members of...
  24. mellster

    CFS is a metabolic condition!

    IMO viral infections can be enablers/triggers or opportunistic bystanders adding to the damage, doesn't mean you shouldn't treat them if necessary. But the countless inconclusive serum studies suggest that a virus is unlikely as a chronic agent at this point. I don't have a problem if they...
  25. mellster

    CFS is a metabolic condition!

    It is a metabolic condition, caused by chronic sub-acute (likely bacterial) infection(s). The two options for those who have a genetic predisposition or simply the bad luck of a perfect immune onslaught (by triggers such as Mono/Lyme or other immune weakening infections or trauma/surgery/travel)...
  26. mellster

    GcMAF trial

    Hi Omar, pls. verify this with your doc, but IMO the high lymphocyte percentage (of WBCs) read is classical for chronic infection/inflammation (if the read is persistent over time). Note that in absolute numbers they are often within range, meaning the total number of WBCs is low-normal and...
  27. mellster

    The Undetectable Infection

    I really hope you succeed, and I also think phage therapy could be useful, but I expect heavy resistance for the reasons you mentioned. I also forgot about intravenous ABx, but that its a brutal treatment. Even with phage therapy one needs to be careful, AFAIK they test the phages effectiveness...
  28. mellster

    The Undetectable Infection

    I don't know if he's right but I am pretty sure everyone else is wrong. The abuse of funds on useless serum studies for the umpteenth time that yield nada needs to stop. It's time they move to tissue samples taken from regions where the patients actually exhibit symptoms.
  29. mellster

    The Undetectable Infection

    I am also wondering once pathogens have been identified, esp. if they are localized only, how to deliver an effective therapy to the regions that are very hard to reach without a huge dilution factor. You can't just ingest a large dose of medication hoping it won't dilute down too much by the...
  30. mellster

    The Undetectable Infection

    Thanks, I'd be really interested in this. As you may know I have officially fully recovered since a while and am in good aerobic shape, but I have some trouble with cystic lesions in the lymphs by the throat/jawline. Docs usually blame this on EBV or other viruses integrated into the DNA after...