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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. TerriK

    Negative study of CFSers cerebrospinal fluid for XMRV and other viruses

    A side note.. it would be nice to know if any of these CFS patients had oligoclonal banding. It seems to me it would be a significant finding in patients with no other dx; no infection or dx of MS etc. The bands have to come from somewhere, from a significant immune response within the body...
  2. TerriK

    Holtorf Clinic?

    re: NT/Neural Therapy Thanks for the explanation, and excuse my late response; I somehow missed your post. re: Hydrocortisone Thanks for sharing your experience. I ended up having labs run that showed like many other here, I have toxic levels of bad things, not any levels of good things like...
  3. TerriK

    T-shirts to raise awareness and funds

    that said, though, I think getting a few good ones for ME/CFS first and then seeing how things go would probably be best before branching into related illnesses Agree; a few good ones for ME/CFS would be what I would want to see. Personally, I don't want them too sweet or nice.. I would...
  4. TerriK

    T-shirts to raise awareness and funds

    Your friend does lovely work. Personally I am up for a bit stronger statement than the shirts that she had on Etsy. If her health permits and she is willing, I think she would be wonderful to design something with a bit more edge to it.
  5. TerriK

    T-shirts to raise awareness and funds

    Agree: proceeds from wherever shirts are done to go to WPI. I like Silence = A Living Death. I have no experience with Zazzle.. off the top of my head an additional 10% profit is not worth any additional headaches, JMHO. I have purchased from Cafe Press; found them to be quick, nice...
  6. TerriK

    T-shirts to raise awareness and funds

    I like both these ideas, but the first one especially since we could use it now. If it takes awhile to get things going, then I would go with the "I TOLD you I was sick" ones better. Just my 2 cents.
  7. TerriK

    Comment by 'TerriK' in 'Overly Emo'

    Carrigon: Ditto!! I have them too; can not stand it! It is like being controlled by something/someone else. It is so frustrating to feel that you are at the mercy of some other force, but knowing that force is... you! Like you, I don't feel depressed, just very sad, and very frustrated when...
  8. TerriK

    T-shirts to raise awareness and funds

    Another group I have volunteered with has used CafePress with good results
  9. TerriK

    hiring someone to help you file?

    Even in what I consider my "miracle" case, I'm afraid it did take 5 months. Getting an advocate sounds like good advice; I know my case is an exception. BUT, there is no way to say for sure how it will go. All the negative info almost made me NOT apply; I was so, so close to not even trying...
  10. TerriK

    hiring someone to help you file?

    Hi.. I am writing this to tell you my unusual experience with disability. First, I got it. No review, no nothing; on my first try, which did online, by myself,brain fog and all. Second, I am classed permanently disabled; the worst classification you can get. The absolute soonest they can...
  11. TerriK

    Article: How's the PR this time?

    Thanks for all your hard work, Tina, and as Otis says: LET OUR PAPER GO!:victory:
  12. TerriK

    Holtorf Clinic?

    Thank you so much! Please excuse my ignorance, but what is NT?
  13. TerriK

    Holtorf Clinic?

    Thank you for reminding me of that site! As you can likely tell, I am a newbie and on info overload. I forgot all about them and that they have a referral section
  14. TerriK

    Holtorf Clinic?

    Thank you for the reference! Have you seen Dr. Guyer or heard good things? As you can probably tell, I am newly dx, and still trying to figure out which way to go and what to do. My local drs are pretty much done with me, except for doing med refills...no interest in helping me improve, etc.
  15. TerriK

    Holtorf Clinic?

    Sounds just like everyone else who has responded , thanks for taking the time to reply!
  16. TerriK

    Holtorf Clinic?

    '"THAT'S THE RISK WE TAKE"??????!!!!!! How awful. That is really scary. I knew they were expensive, but I was so hoping it was because they were good and getting results. I'm living in Indiana now, but I'm originally from Torrance, so I have family there and thought it would cut down the cost...
  17. TerriK

    Do you use Facebook?

    Yes; FB has become a lifeline for me too; I feel more like a "real" person and less like someone forgotten and shoved aside from life. Every time I get a friend request or I have someone accept mine I am thrilled like a little kid. I started my account post-illness, so I don't have as much...
  18. TerriK

    Do you use Facebook?

    I like the way the News feed works; it's been a simple way for me to keep up with all the many CFS/Fibro groups, etc.
  19. TerriK

    Holtorf Clinic?

    Well, that's what I was afraid of... too good to be true! I went back and read through the earlier threads. I am new posting to this group, but I have been lurking for awhile and I can see there are a lot of intelligent, experienced people here. If the Holtorf clinic were for real, there...
  20. TerriK

    Oligoclonal banding

    Thanks so much for your response, JT. I had found the first link stumbling around the net I my own, but not the second. That one led back to a site that compared and contrasted ME vrs MS... wow... The neuro doc at the Mayo clinic was completely unconcerned about these test results; told me I...
  21. TerriK

    Holtorf Clinic?

    Has anyone been treated at one of the Holtorf Clinics in CA? They seem to use anti- virals similar to those in the Lerner study. Their website claims something like 90% of their pts see improvement after 3 visits. Thanks! Terri
  22. TerriK

    Oligoclonal banding

    Hi.. Has anyone else out there had a lumbar puncture that came back with oligoclonal bands? My original dx was atypical MS, because my LP came back with 3 bands and elevated protein. The Mayo clinic docs told me CFS/Fibro though, mostly because my scans are clear. Just wondering how many...