• Welcome to Phoenix Rising!

    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. S

    Feel awful after naps

    I also feel like death after a nap; nauseous, shaky.
  2. S

    Getting my scooter!!!

    I have a GoGo Scooter and I just love it. I was lucky to have store a block away with big double auto doors and I could just put items in my little basket and it was wonderful to be able to shop for myself. Also I had no steps to get outside - bonus. It is too big to maneuver around the house...
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    Herpes meds - where to buy them, how much does it cost and which ones do i need?

    In the US these meds are obtained by prescription from doctor. I started this illness with Mono, I also have vaginal herpes outbreaks occasionally that are very painful. I thought a year ago that Valtrex was the way to go but it was not for me. I spent the entire year bedridden. Terribly ill...
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    My experience with Valtrex

    I haven't posted very much here because I'm just too ill but I saw this thread and wanted to tell you that I stopped taking Valtrex at the beginning of January because I just couldn't afford it anymore. I had been taking it for 3 years. I never felt any better on it, but I didn't want to get...
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    FDA Panel Rejects Xyrem as Fibromyalgia Treatment

    FDA Panel Rejects Xyrem as Fibromyalgia Treatment Advisory Panel Members Worry About Potential for Abuse of Drug That's Similar to GHB By Matt McMillen WebMD Health News Reviewed by Laura J. Martin, MD Aug. 20, 2010 -- An FDA advisory panel today overwhelmingly rejected the application...
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    Gulf War Vets with FM/CFS wanted

    Gulf War Illness Researcher Georgetown University-Seeking Gulf War Veterans Healthy and Ill March 9, 2010 by Denise Nichols Dr Barinauck and his staff are exceptional! Dr Barinauck site is full of the information on his current studies. He has three gulf war illness studies: 1. Gulf...
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    Disability and Taxes

    Appologies if someone already started a thread on this topic and I can't find it. I am so foggy. I need to do my taxes and am having so much trouble getting started. I have a question if someone can help me.... I finally won my SSD last June and now I have to pay taxes on all the back...
  8. S

    Dr. Richard Firshein offers XMRV Test

    We don't want to hang the wrong doc. If moderators want to delete post fine by me.
  9. S

    XMRV positive by serology from WPI

    All the best to you Gracenote. This is the first I've heard that the serology test was now available.
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    Dr. Richard Firshein offers XMRV Test

    George, that was certainly my impression. Grrrrr! Just another shuck trying to make a buck off us. I had a terrible experience with a DO a few years back who claimed he could cure my FM by forcing the limbs back and forth at the joint to push out the phosphates (Dr. St. Amand protocol) . He...
  11. S

    Dr. Richard Firshein offers XMRV Test

    Well now I feel kind of stupid because when I try to check it further it says the URL is not working. I originally received this google alert: PubMed.gov is supposed to be reliable, yes?
  12. S

    Dr. Richard Firshein offers XMRV Test

    You must go to the link to check out the photos in the article. Priceless!
  13. S

    Dr. Richard Firshein offers XMRV Test

    Too harsh and unfair
  14. S

    People Who Tested Negative to the VIPDx tests

    GoWest, I'm sorry that you didn't get the results you were hoping for. I guess we are in the same boat. I just got the written results in the mail. It says "Negative result suggests but does not prove absence of infection". This leaves me wondering....... I'm so happy that you live in...
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    Welcome wideawake - one of the UK 14 (XRMV+)

    [I moved wideawake's posts to their own thread. Please join me in welcoming her to the forums. Kim] Sorry, where?
  16. S

    People Who Tested Negative to the VIPDx tests

    No apology necessary. We're all just bumping along here. I think they change the information they put out as fast as we can absorb it. It is hard to keep up. I'm sure we'll all know more as Winter turns to Spring.
  17. S

    People Who Tested Negative to the VIPDx tests

    Hi Kim, I don't see that info on their Q&A sheet. Where did you find it? This is what they gave me when I got my negative results earlier this week. I got the impression that they are not going to retest me for free. I checked the VIP site today and this is what is said:
  18. S

    My VIP XMRV results

    Yes, go ahead and change the post to "my xmrv results" or something like that.
  19. S

    My VIP XMRV results

    Yes! #*??//%&XX? Yes, I could ask them to store my blood for the serology test, but wouldn't a fresh sample be better?
  20. S

    My VIP XMRV results

    You guys are great. I'm so glad you are here. Honestly I don't know how I feel about it yet. I think I'm really disappointed because I'm so sick and I want to know what is causing it so I can finally move forward instead of back. I've lost so much to this illness; I want to know what robbed me...
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    My VIP XMRV results

    Five minutes after I posted this I received a call from my doctor's office saying he received the results and my test was negative. Just a note that I was taking Valtrex and also my doctor's office didn't send the paperwork with the blood and so my blood was held for a week at the lab until we...
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    My VIP XMRV results

    Not sure if this was posted already. I've been bothering them about my test results. Very anxious as you can imagine. This is what they sent me: Results take 3 to 4 weeks. It takes 10 days to grow the cells before we can culture them for analysis. Questions and Answers regarding XMRV...
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    Dr. Reeves Removed from the CDC's CFS Research Program

    Where's Bill? I'm really beginning to believe that together we have once voice and it is powerful.
  24. S

    Rumor of having to stop antivirals before testing

    I posted this info on another thread but should probably put it here. I had my blood drawn for the XMRV test on Jan 11 and was taking Valtrex at the time. This is the response I received from VIPdx in regards to my questioning them about the rumor that I've heard here that you have to stop...
  25. S

    Medicare: coverage of XMRV tests

    Medicare has been billed for my test. I'm awaiting decision. I will post when I hear something.
  26. S

    Valtrex and EBV

    I had my blood drawn for the XMRV test on Jan 11 and was taking Valtrex at the time. This is the response I received from VIPdx in regards to my questioning them about this;
  27. S

    Clongen Lab XMRV Test

    I just came across this from Clongen Laboratories, LLC http://clongen.com/XMRV_PCR_Testing.php?gclid=COrbu46jsZ8CFQwpawodG1E_LQ[/URL] 12321 Middlebrook Road, Suite 120 Germantown, MD 20874 Phone: (301) 916-0173 Fax: (301) 916-0175 White Paper on Xenotropic Murine Leukemia - Related...
  28. S

    Is getting well about money????

    My own personal experience is that money makes all the difference. Any doctor who specializes in our diseases (or claims to) usually don't take insurance and charge $600 an hour or more. The tests alone can cost thousands and thousands of dollars. My illness has cost me my home and and my...
  29. S

    To test or not to test?

    I made the decision to get tested because I need to know if I'm contagious and because I am fighting my LTD Insurance company for denying my claim after 2 yrs. Also, [U]I want to know![/U] - don't you? I put it on my credit card and I'll pay it off little by little. Waiting for the results is...