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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. HopingSince88

    Article: Who's In? and Who International XMRV Workshop

    It's OK for Alter to leak info on his unpublished work, but Dr. Mikovits can't? Sounds a little sexist to me.
  2. HopingSince88

    Czech article on XMRV/CFS and the Dr. Alter study

    A little topsy-turvey...but looks like a positive article in my reading of it.
  3. HopingSince88

    Born with ME

    The first thing I would do is get tested for XMRV. If it is positive, get your Mom and/or siblings tested. That will indicate whether this may have been passed to you from your Mom. Dr. Mikovits has stated that it is likely transmitted vertically, and that there are high titres of XMRV in...
  4. HopingSince88

    Overseas trip, tons of flying, relatives in a different culture -- I'm freaking out!

    Stacy, Whenever I travel a distance that allows it, I sleep by wearing the most comfy sweatsuit I own, and I bring my own pillow. I also take a benedril or Tylenol or Advil pm as I am waiting to board the plane. By the time we are in the air I am very drowsy and have no problem falling...
  5. HopingSince88

    25 Action Items to Assist Gulf War Veterans (including CFS research)

    Yesterday President Obama gave a speech to a Veterans group, which I watched live over the internet. He mentioned better support for veterans with illnesses and specifically mentioned PTSD and for their carers, but there was no mention of Gulf War Illness.
  6. HopingSince88

    stomach parasites

    Thanks for this tip, Judderwocky. I have a cat and a dog at home...and the occasion visit from a mouse or bat. So cleaning yourself out might be a really good idea.
  7. HopingSince88

    stomach parasites

    There is a special kind of diatomaceous earth that is food grade. Years ago I bought this once for gardening purposes. It is 'sharp' microbits of earth made from silica (glass) that dissuade crawling critters from attacking plants because it is physically abrasive, so the pests won't crawl...
  8. HopingSince88

    Klonopin

    Hello Chris, One of my kids has ME/CFS symptoms and has been ill since '89. She was very sick from '89 through '92. In that year she started taking Klonopin. I think she was on it for about 4 months when she had a complete remission of all symptoms. At the time she was on a lot of meds...
  9. HopingSince88

    Outrageous stomach pain

    Hello Longbow, My daughter is very ill and has severe abdominal pain. She has been sick with this for about 20 years, and no cause has yet been found. She has had every test imaginable, and spent 3-4 years of her life in a hospital room...or at least it seems that way to me. currently she...
  10. HopingSince88

    Cognitive-Behavioral Therapy: Has Anyone Here Benefited at All?

    Ditto and Ditto. I have been seeing a gestalt therapist for about 18 months. It has been a very good experience and has helped with mood and depression(which occurred long after falling ill). Uses an integrated approach to mind-body-spirit and helps with recognizing what can and cannot be...
  11. HopingSince88

    Why probiotics can be harmful (amines!)!

    I had problems with kefir too. First time I had it there were no problems. Second time my lips and tongue swelled up. So something in there was causing an outright allergic reaction. I was very upset by this as I really enjoyed the kefir.
  12. HopingSince88

    New WPI licencing arrangement ......... with themselves ?

    I see no problem with this. They will make more money from the work that they did and the technology that they developed. Also, it states that they will "enter into sublicense agreements with capable partners to improve and increase the availability of XMRV testing worldwide." - which to me...
  13. HopingSince88

    periodontal disease

    Be careful with the Vit K. This is a coagulant. It is what has the opposite effect of heparin. Anyone with hypercoagulation should probably avoid Vit K.
  14. HopingSince88

    Comment by 'HopingSince88' in 'Things People Say'

    So sorry this happened to you, Carrigon. You deserve so much better than this. Just let the anger and sadness wash through and out of you. Try not to hold onto it...as it is only hurting you and not him. He isn't worth the pain you are feeling. You are cared about here by many. Hoping
  15. HopingSince88

    XMRVChronic Fatigue Syndrome and the Blood Supply - Teleconference June 11th

    JT1024 was hoping to attend. Maybe she will pop in and let us know.
  16. HopingSince88

    A question about accuracy of an antibody test

    My question is 'what type of antibody does the test look for' ? The reason I ask this is that I had tested positive for IgG for gliadin (a molecule of gluten) once, and then after a long period of time that I was not eating wheat, I tested negative...the antibody for gluten disappeared! I...
  17. HopingSince88

    Food allergy test

    My experience with allergy testing by most MD's is that they only consider IgE to be a true allergy, and they discount IgG as an allergy, and often don't even test for it. I have had two gastroenterologists tell me that although I have an IgG to gliadin (one of the molecules in gluten), that I...
  18. HopingSince88

    Allergie Immun

    Brenda, Have you gotten to try the drops?
  19. HopingSince88

    Who else has had a MRI SCAN? was it normal?

    Here is what wikipedia says: "It measures the hemodynamic response (change in blood flow) related to neural activity in the brain or spinal cord" Link: http://en.wikipedia.org/wiki/FMRI
  20. HopingSince88

    Sauerkraut

    More questions for Anne One more think about fermentation and whey: do you filter the whey before using it to ferment veggies? When I make yogurt cheese and drain off the whey it is somewhat cloudy. I only use an unlined strainer to do this. Maybe I should be using an unbleached coffee...
  21. HopingSince88

    Sauerkraut

    Anne, I am interested in your box and waterpipe configuration. I had tried to make yogurt from milk, and it was an abysmal failure, and I know it was a problem with ambient air temperature. I keep my house fairly cool (58-60 degrees F). Any chance you would be able to put up a picture?
  22. HopingSince88

    Funny yet serious!

    I did for a while think I should carry my own eating utensils with me. Then I remember seeing something about XMRV only being able to live outside blood for 10 seconds. Does anyone else recall that? For this reason, and the fact that HIV is not transmitted in saliva, I don't worry about this...
  23. HopingSince88

    fingernail changes

    Disappearing moons can be a sign of B-12 deficiency. When I was a child the first thing my pediatrician would do was look at my fingernails. I think that there are lots of clues there to possible issues with diseased organs as well as circulatory problems and vitamin deficiencies.
  24. HopingSince88

    Spontaneous malaise vs post-exertional malaise

    Jenny, When I wrote my above post I was thinking about influenza and how our bodies initially react to infection. When we are first infected the body sends out the IgM antibodies. My understanding is that during this period we experience symptoms (fever/chills/achiness etc). As time...
  25. HopingSince88

    XMRV AND ANXIETY DEPRESSION THE anxious Amygdala

    Wendy, What does 'pulsing' the supplement mean?
  26. HopingSince88

    A Moment of Reflection: Please Read!

    This thread has raised some interesting things. But what interests me most is that post #1, which started it all, has been editted. There are at least 2 statements that i recall, which are now missing. One statement made reference to the author being in contact with a whole host of...
  27. HopingSince88

    No sweat

    I am interested in this subject because I barely sweat. At one point I thought I felt well enough to go to a gym and use a personal trainer. The fastest I could go on a treadmill without getting floaters was about 3.5 mph. After 10 minutes at this rate, with my heart rate (which normally is...
  28. HopingSince88

    Spontaneous malaise vs post-exertional malaise

    Maybe this is just your own body's response to the disease process? the immune system turning up higher because a virus is replicating?
  29. HopingSince88

    Hawaii health plans back 'game-changing' reform, Personal physician would become.....

    I think that unless our elected officials, and the captains of the insurance industry are forced into having the exact same health care as the rest of us, nothing good will come of reform. I think the 'team coordinator' approach is just another way of saying HMO...where one doctor has to...