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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. Alesh

    Amsterdam scientists find an enzyme (IDO2) that could be the culprit of #LongCovid: Prolonged IDO2 activity & associated cellular stress in PASC.

    Could antidepressants be useful in this respect? https://www.sciencedirect.com/science/article/abs/pii/S0889159117300521
  2. Alesh

    My treatment for Borrelia miyamotoi

    There is nothing like "chronic Lyme disease", only "post Lyme syndrome" exists. Taking antibiotics is futile and preposterous.
  3. Alesh

    Extreme head pains combined with upper body pains

    Yes, I have pain in the left part of my head. It is permanent, sometimes it is like an "inflammation" sometimes it is pain as if somebody is drilling in my head. Both is unbearable. Fortunately the intensity varies and ibuprofen helps to some extent.
  4. Alesh

    Abilify- Stanford Clinic Patients

    I have been taking amisulpride since 2004. Then in 2011 I started suddenly to gain weight and also my breasts swelled because of this so I reduced the dose to 50mg every other day. I am not diagnosed diabetic but who knows if I have diabetes I am totally bedbound. I have no permanent side effect...
  5. Alesh

    Abilify- Stanford Clinic Patients

    Amisulpride, aripiprazole (Abilify) and lurasidon--These three antipsychotics help me but I have hypoglycemia/hyperphagia after them so I don't take them every day. Their effect and what unique these three antipsychotics have is 5-HT7 antagonism.
  6. Alesh

    A Unifying Hypothesis of the Pathophysiology of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS),,,,,

    The effect faded. Then I stopped taking clenbuterol.
  7. Alesh

    A Unifying Hypothesis of the Pathophysiology of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS),,,,,

    It is very interesting. About 10 years ago I tried large doses of clenbuterol (I believe it is beta 2 agonist too but stronger than albuterol). And a miracle happened: After more than 10 years in a zombie state I was able to run and drive the bibycle. Unfortunately I wasn't able to replicate...
  8. Alesh

    Is CFS caused by brain infection?

    As an update I had cultivation from my nose done and they found Klebsiella Variicola, which is a relatively recently discovered pathogen. I was given clarithromycine, then cefuroxime and topical tobramycine but so far to no avail. My neurologist assured me that it is just an opportunistic...
  9. Alesh

    BMJ Opinion - "Missing the psychosocial diagnosis—a form of institutionalised malpractice" !!!

    Of course I don't know how severe your illness is. I can say with all honesty that I have suffered as if I were in Auschwitz not 11 months like Primo Levi or 3 days like Viktor Frankl but 20 years. ME looks like it is not from this world it is a ghastly disease. Even if I recovered I would never...
  10. Alesh

    BMJ Opinion - "Missing the psychosocial diagnosis—a form of institutionalised malpractice" !!!

    I have just read Primo Levi's "If this is a man". What psychiatrists did to patients with ME is another holocaust. It is even more monstrous than the nazi one: There are more victims and it is happening much longer. We are isolated like the prisoners in Auschwitz behind the double barbed wire...
  11. Alesh

    Serotonin research

    There are patients with ME who are helped by SSRI. It recently came to my mind that it could be due to the direct antimicrobial effect. Provided, of course, that ME is of infectious origin or has such component. Some antidepressants and neuroleptics have been known to have this effect. E.g...
  12. Alesh

    Lipkin at the NIH: NIH Telebriefing Transcript Available

    It is good that Lipkin is in such a close contact with ME sufferers and he also feels obliged to those whom he wasn't able to help and who commited suicide. It is also great that he distinguishes subsets of patients, some are better on probiotics, some on antiherpes antivirals and some on SSRI...
  13. Alesh

    Is CFS caused by brain infection?

    I cannot agree more. I have had feeling of sinus infection since the begining. Cracking sounds in sinuses. My ME started like mono. I feel constant "inflammation" on the left of my brain and I have constant rhinorrhea from my left nostril. The stuff is white and thick. After 20 years of...
  14. Alesh

    #OMFScienceWednesdays-The hunt for elusive pathogens in ME/CFS, by Jaime Seltzer, M.S

    My ME started like an infection, it feels like an infection (of the brain in my case) and if you exercise with an infection, say a flu, you get PEM. I am not an expert but it seems to me that the source could be contaminated tap water since I and my two brothers fell ill after we moved to a...
  15. Alesh

    #OMFScienceWednesdays-The hunt for elusive pathogens in ME/CFS, by Jaime Seltzer, M.S

    Many European patients are helped by amisulpride. Amisulpride among other things blocks 5-HT2. This receptor is the entry point of JC polyomavirus to the cell. Can it play any role?
  16. Alesh

    Dr. Cheney Warns Against Long-term Use of SSRIs and Stimulants

    Shame on CFS mythology I hate the CFS myth so much. Show me two patients on these boards who suffer from the same thing. There is no such thing as "CFS". Perhaps "Chronic Disease Syndrome" would be even better name to group under. I hate the idiots exploiting this CFS myth for denigrating the...
  17. Alesh

    Since your ME/CFS onset, have you caught the Cold & or Flu more or less frequently?

    "I wish there was a way to induce a fever!" There are many such ways, the simplest is a prolonged warm tub-you can measure your temperature in the mouth and it is possible to increase body temperature to 38C after being immersed for about an hour in warm watter but it is quite a...
  18. Alesh

    Since your ME/CFS onset, have you caught the Cold & or Flu more or less frequently?

    Who of you had BOTH the sudden flu-like onset AND more colds & flus since your ME onset?
  19. Alesh

    Since your ME/CFS onset, have you caught the Cold & or Flu more or less frequently?

    I had caught everything the first 5 years or so, now it is slightly better but still I often catch a cold virus, before the onset I almost never had a cold.
  20. Alesh

    3 Things that Help the Most!!

    1. Escitalopram 2. Clenbuterol 3. Oxandrolone
  21. Alesh

    HHV-6 may reach brain through nose

    If this brain eating amoeba can do the trick why not a tiny virus? http://en.wikipedia.org/wiki/Naegleria_fowleri
  22. Alesh

    Just got a prescription for Memantine - anyone tried it?

    Yes I tried memantine in the past without any effect. But perhaps if taken chronically...
  23. Alesh

    Sudden low grade fevers?

    Thanks for the answers. For me it is a new symptom (together with hypertensive crises). I hope some doctor will want to investigate it...but I doubt it.
  24. Alesh

    Sudden low grade fevers?

    I have had ME for more than 13 years. In the first year I had elevated temperature. But the remaining time I had temperature below 36C. Now for more than a month I have a constant temperature in the range of 37-37.7C and I am more exhausted than before. Does anyone have a similar experience? Can...
  25. Alesh

    Sertraline

    Somewhere I saw a case of two women who were both cured by sertraline and here again is a case of a typical ME/CFS (at least my illness is most similar to this). This man was cured after 7 years (look at what he was taking): http://www.ukclimbing.com/forums/profile.php?id=17509...
  26. Alesh

    Proposition to put the XMRV discussion here on a more profound and scientific basis

    Basically I agree with IVI but "fatigue" is a sign that never was and never will be pathogonomonic. I suppose most diseases caused by a microorganism start suddenly (like a flu). Why not to start with a definition that would at least define a subgroup of "CFS patients" that began suddenly like...
  27. Alesh

    The HORRORS of Klonopin addiction

    If I remember well clonazepam is the least dangerous of all benzodiazepines in that the tollerance develops after a fairly long period of time. The benzodiazepine withdrawal syndrome (after large doses for long time) may be particularly dangerous as it may be fatal. On the other hand: When the...
  28. Alesh

    Post exertional relapses

    I am almost sure ME is some kind of chronic brain infection. If anyone has a flu or any other infectious disease and he is made to do some physical exercise his condition always deteriorates. Why is the same effect so "puzzling" for the "scientists" dealing with ME?
  29. Alesh

    Amisulpride for CFS

    I have experience with amisulpride: Nothing special with both low or high doses. It causes hyperprolacitnemia, which can be useful in suppressing testosterone, if testosterone causes XMRV to replicate with higher rates.
  30. Alesh

    does anyone feel better when they dont eat?

    Not only DHEA but also ghrelin increases: http://en.wikipedia.org/wiki/Ghrelin I would like to know all the metabolism changes related to fasting and try to mimic fasting chemically as much as possibe. Ghrelin seems to be really interesting hormone.