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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. collegeusername

    My nightmares getting worse

    amen
  2. collegeusername

    Open weeping sores around base of tail bone & mouth

    I gave herpes to about 15 people before I had any idea I could have it because I showed no "typical" symptoms. Not a single person I gave it to has developed a cold sore- the ONLY person who had a cold sore in this chain of events was the person I got it from sharing drink, and this was weeks...
  3. collegeusername

    My nightmares getting worse

    hey man just wanted to say that the same thing has happened to me. i used to fall into a deep sleep no problem and never dreamt much, until i started getting nightmares a month or so into having this virus. They kept up, some weeks very frequent and some I almost forgot about it, but now I am...
  4. collegeusername

    Wounds Do Not Heal

    I asked my doctor, and he said 12 mg is all that my body can absorb (23 yr old male, small-medium stature); we went through all the vitamins
  5. collegeusername

    Wounds Do Not Heal

    I take heavy supplements, which include 50 mg of all B vitamins+ 45 mcg biotin, 500 mg Ca, 250 mg Mg, .5 mg Cu, 2.5 mg Mn, daily intakes of vitamins A C D and E, and a total of more than 15 mg Zn (which is the maximum daily absorption for an adult). I have not yet tried Zn powder, however
  6. collegeusername

    Wounds Do Not Heal

    Hey, I'm 9-10 months with CFS now and of the MILLION strange symptoms I have, this is one that really frustrates me and makes me think i have no hope: my wounds heal extremely slowly, become much more painful after-the-fact, and become yellowish and inflamed. and im no wimp!- I used to be a...
  7. collegeusername

    Open weeping sores around base of tail bone & mouth

    did it happen after you kissed someone/ shared glasses or food? or you're saying it appeared randomly 6 years after being diagnosed with CFS? Doctors are useless- they never test or ask to test for things like these. Normal people don't get a "skin infection" that lasts more than a few days...
  8. collegeusername

    Open weeping sores around base of tail bone & mouth

    did it happen after you kissed someone/ shared glasses or food? or you're saying it appeared randomly 6 years after being diagnosed with CFS? Doctors are useless- they never test or ask to test for things like these. Normal people don't get a "skin infection" that lasts more than a few days...
  9. collegeusername

    Open weeping sores around base of tail bone & mouth

    biopsy is best because then you know positively what and where it is, but you can test blood as well. are they constant/recurring or eliminated and if so how long before they were gone
  10. collegeusername

    CMV Infection.. need some input! .. Valcyte

    Well the first question you need to ask yourself, copi2k, is what behavioral patterns switch from early to late in the week. To me, this sounds like it may be stress related; as the weekend approaches, you have less stress, less symptoms? But if you do heavy exertion, such as a manual job like...
  11. collegeusername

    CMV Infection.. need some input! .. Valcyte

    Could you please explain better the LTT tests and those results? Are you saying you're positive for only CMV or also the others?
  12. collegeusername

    Feels like a hypoglycemic attack but no diabetes or low blood sugar.

    I'm not sure if this helps, but I have low blood sugar and it seems quite different than what you're explaining: I don't feel ill so much as extremely tired all of a sudden, I may sweat lightly, and it does not affect a specific area such as the legs- more so it feels like it's my head and brain...
  13. collegeusername

    anyone have burning, aching legs?

    my symptoms came suddenly and concurrently with a viral attack, and the burning aching legs and pelvis has been one of the symptoms that came at day 1 and is here to stay- hasn't left me for more than 5 minutes. mine ache considerably more after activity, but they never reach pain for the most...
  14. collegeusername

    anyone have burning, aching legs?

    idk about this lactic acid theory tbh...
  15. collegeusername

    Is it a new disease or its CFS ?

    I wouldn't jump to the conclusion that we're not in the same boat as ME.CFS patients. Many of them are in that category because they suffer "generalized" or "nonspecific" symptoms - like myself, and those are the very same symptoms we're suffering from. the only difference is that our symptoms...
  16. collegeusername

    Is it a new disease or its CFS ?

    the link shows the high correlation of hsv and hiv, and their research confirmed that hsv also targets the same T cells as hiv and lowers the cd4 count in the same manner. if a person suffers hsv, the environment the hsv has created is conducive to attack by hiv. the two are mutually...
  17. collegeusername

    Sensitivity to Specific Activity

    are you able to hone it down to specific triggers? i have to move around like a 70 yr old man to avoid triggering anything myself. i know my triggers are sunlight, heat, and physical activity that brings me to anything more than a very light sweat, as well as alcohol & coffee. try to...
  18. collegeusername

    Is it a new disease or its CFS ?

    check this one out: http://www.natap.org/2012/ICAAC/ICAAC_52.htm
  19. collegeusername

    Is it a new disease or its CFS ?

    its important to note that they are listing the symptoms that may be indicative of various cancers, from skin to liver to cervical to breast cancer. i dont think they're saying each and every one of these symptoms would manifest if you had, say, cervical cancer caused by hpv. definitely go get...
  20. collegeusername

    Is it a new disease or its CFS ?

    never had yeast problems, but i had the white tongue for a few months. just like hivlikevirus has spread it without any physical symptoms, i have too. i still have a constant sore throat but it's pretty mild at this point. my lips are now picture perfect, no cracks or dryness, and only a tiny...
  21. collegeusername

    Is it a new disease or its CFS ?

    if this is in fact HSV, it makes a lot of sense that some of us very readily transmit it via saliva while some of us apparently only transmit it sexually. after extensive research, i've concluded both are transmitted via saliva, but hsv-2 is quite difficult to pass on orally and has less of a...
  22. collegeusername

    Wisconsin Viral Research story

    This is what im saying! the herpesvirus family is responsible! how many of us have tested for all the hsv viruses?
  23. collegeusername

    Is it a new disease or its CFS ?

    hivlikevirus, can you give me editing ability on your site? (if that's possible w.o knowing code), just want to simplify it a bit and delete repetitive things, add a few things. also have you tested hsv1 yet?? honestly, look at the symptoms, im not crazy here. looked at your blood results from...
  24. collegeusername

    Is it a new disease or its CFS ?

    8eraser8, what tests have you conducted so far? On monday I am having my full results printed and sent to me, the latest of which tested for 10 or so rare diseases such as lyme, i honestly forget all the others, but along that line. i'd be interested to know what you have ruled out yourself tho...
  25. collegeusername

    CFS = Immune Dysfunction?

    if its due to a virus, and the virus remains active for a prolonged period in your body, it probably means our bodies are constantly fighting that virus unsuccessfully and so our immune systems are constantly overactive.
  26. collegeusername

    CFS = Immune Dysfunction?

    There's no doubt CFS/ME is a symptom cluster as you say. autoimmune diseases are typically difficult to diagnose and can include many non-specific symptoms which mimic (or are synonymous with) CFS symptoms, such as fatigue, cold symptoms, fever, muscle aches and spasms etc. however, autoimmune...
  27. collegeusername

    CFS = Immune Dysfunction?

    I agree with what Alex says, but he still emphasizes the point that a trauma must activate the disease. I don't think anyone out there can get CFS without viral infection at some point, and I think usually the viral infection coincides with the onset of CFS symptoms. I've heard many times of a...
  28. collegeusername

    Is it a new disease or its CFS ?

    also if a virus infects you extremely badly it can become viral meningitis or the like, which means that it infects your brain and virus particles will be detectable in a spinal tap. The spinal tap is rarely performed because of the minutely small risk of injuring the spine. My next move is to...
  29. collegeusername

    Is it a new disease or its CFS ?

    that's a brutal story man, how did you get injected with blood?? what are some of your most characteristic symptoms, and do you believe you have nerve damage?