• 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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Search results

  1. K

    NEW by Dr. Lerner - ME/CFS Treatment Resource Guide for Practitioners & ME/CFS video

    I am a Dr Lerner patient. I have been with him for 4 years. I was treated with valtrex for my EBV. I was treated with valcyte for CMV and HHV6 and doxycyline for mycoplasma pnuemoniae. I started as a 1 on his energy index. I am now about a 4.5. I could not hold a job or do anything on a...
  2. K

    Article: Its Just the Weather, Baby! Toni Bernhardt's How to be Sick (Blog #3)

    A buddhist friend gave me this book and I liked it..... A lot of what she wrote, I related to... I have learned more about "Being" than I ever knew before. I was busy "doing" as a teacher and no, I didn't look at the birds or trees much.. We still have a choice, hate the illness or accept the...
  3. K

    Valcyte (plus) Update

    sick of cfs - You pretty much described my story. I started at a 2, and have worked up to a 5. I can do a few things a week and my crashes are not as long or as hard. I have been on valcyte for 3 1/2 years. My titers are still high, so he won't pull me off the meds. I am in my fifties, so...
  4. K

    Starting Famvir

    Grape Funk - The girl got sick around 16. She was sick for 2 years. She started out as a 4 or 5. She started with Dr. Lerner around 18 and she is now 20. She is working full time. She considers herself cured. She goes to the same doctor I go to in Central Ohio. She still sees Dr...
  5. K

    Starting Famvir

    Cort, do you know the name of the new drug Dr. Peterson is trying or when he will be done with his study? Live and Let Die - I have been on valcyte, valtrex and doxycyline for 3 years. I have improved 3 points and remain steady with that improvement. I went from a 1 1/2 to 4 1/2. I still...
  6. K

    ME/CFS Doctor List

    Martin Lerner
  7. K

    April 7/8 NIH State of Knowledge Conference - watch online to show our support!

    I wish Judy could keep her cool, but in her defense, she is so frustrated. She knows she's onto the answer and wants treatment to start happening, instead of the bureaucratic nightmare. It has already been 1 1/2 years since her research broke, and it is still being questioned and may be for...
  8. K

    48 hours left to give feedback on PSAs

    I liked number 2.. It was clear and precise. Also, can any suggestion be given as to how to help fund the research. Appreciate the work!!
  9. K

    Toni Bernhard 2nd blog post

    Toni, This book came to me via a Buddhist friend who was reading it and thought it described my illness. I have it and have read much of it, but not all of it yet. I saw myself in all of the book, even descsribing how your husband is social and you can sometimes visit with friends and other...
  10. K

    Newborn baby in need of prayers

    Will keep Liberty Rose and her family in prayer during this difficult time and all who will be working on her to save her life.
  11. K

    Medco stopped my valcyte and valtrex: Anyone else??

    Thanks, Timaca.. I decided not to call them. I need everything in writing. I will write them and ask for their denial in writing and then work from there. I don't know if Dr. Lerner is fighting the insurance companies; at least that is how it sounded on the phone when I called his office. I...
  12. K

    Medco stopped my valcyte and valtrex: Anyone else??

    I was given a name of an attorney who works with this problem I hope. I just called and he is in court. I am going to be following up with this now. I did receive a letter from Medco saying as per our conversation on the phone these medications will not be filled: valcyte, valtrex and...
  13. K

    Donate to WPI: WPI is under attack, let show them some love!

    I just donated again. When my husband died, I had WPI donations, in lieu of flowers. I know many people donated. We need more of this or any other creative ways to bring about attention and support to WPI.
  14. K

    Medco stopped my valcyte and valtrex: Anyone else??

    I received a call last week where Medco informed that they will not fill my valcyte, valtrex or doxycyline anymore. The reason they gave me for the valcyte and valtrex was it was a drug not approved for my illness. I have heard of that before, but don't understand why they did it for 3 years...
  15. K

    Major Public Media Campaign Launched - This WILL Get the Attention of MILLIONS!

    Tina, All I can say is GREAT JOB!!! to you and to all who have made this happen. You are all to be commended and big thank you for all of your hard work!!!!!
  16. K

    Article: Dr. Friedberg Interview - Living Skillfully and Making a Difference With ME/

    Cort - Great Interview!!! I thought your questions were well thought out. I could see his thinking and believe it can help, but not cure, as he says. Also, he keeps referring to managing stress in our lives. Some of our stress is not coming from us, but in our lives. The loss of my...
  17. K

    Anyone else lost a spouse (death)? Grief symptoms similar to CFS

    Hollie, My heart goes out to you. I can't imagine finding my husband. This was pretty shocking, but in a way I am glad I didn't find him in the garage working or something. I had read somewhere where they say at the 6-8 month range, it gets worse. I don't know because I am not there yet...
  18. K

    Anyone else lost a spouse (death)? Grief symptoms similar to CFS

    Hollie, I am truly sorry to hear about the loss of your husband. I just lost my husband this July. He drowned while night fishing. We believe his heart was involved in the accident. It is overwhelming at times. Fatigue and sadness are all part of it. It is hard for me to tell if my...
  19. K

    Our Health Journey - Our Spiritual Journey

    Wayne, Beautiful piece of expression of the journey we are all taking. And yes, we are all at different places and trying different avenues to health. While one way may work for some, it may not be the right way for others. It is the person's choice and thank you to all who are sharing. It...
  20. K

    Please Tell Me Your Valtrex + Valcyte Story

    Hi Alice, I take both valcyte and valtrex. In the beginning, I didn't think it was so bad and then it hit and hard. I honestly felt bad for about 5 months. I remember one day where I thought I had improved and then slowly went back and passed my baseline. I don't think everyone takes that...
  21. K

    WPI needs our help

    I did it yesterday. I did put Nevada for WPI. I hope that is right:)
  22. K

    Nominate WPI for the American Express Members Project

    It is very easy and they are worthy of being nominated.
  23. K

    Has anyone tested XMRV + after taking Valcyte or Vistide?

    I've been on valcyte for 2 1/2 years. I am now taking it every other day.. I have noticed some improvement; mostly cognitive, but my fatigue is not as bad. I still can't do a lot and get sick and tired very easily. Long story, but I spoke with Dr. Whittemore and asked her about valcyte and...
  24. K

    Question for those who are XMRV+

    I see Dr. Lerner. His theory is that the retrovirus knocks the system down and that's how all the other viruses are able to manifest. Also, I have read and I can't say where that Dr. Mikovitz believes this theory, too. However, if you are taking anti-virals, it is hard to detect XMRV. I have...
  25. K

    Report on the WPI community open house. Aug. 21, 2010

    Thanks, Rich for the detailed report. It felt as though we were there. Greatly appreciated!!!
  26. K

    Reminder!! WPI opening on saturday - donate money

    Thanks all for condolences and donations to WPI. It is very difficult, but my focus is to encourage the efforts of the WPI. He will not have died in vain if many fund the efforts to find treatments for all of us, so we can all stop the suffering this disease brings.
  27. K

    Reminder!! WPI opening on saturday - donate money

    Thanks, Rrrr. It means a lot to me....
  28. K

    Reminder!! WPI opening on saturday - donate money

    Without going into a lot of details, my husband died in an accident this July. In lieu of flowers, I have asked for donations to the WPI. I know of many people who have already given. Many people went to their site and learned about the disease. All of my family members are making...
  29. K

    WPI opening: LET'S SEND JUDY M AND ANNETTE FLOWERS!

    I'm in for $10.00. I have a PayPal account, but not sure how to send the money either. Thanks for organizing this...
  30. K

    FDA and NIH confirm WPI XMRV findings (report of leaked presentation)

    Wow!!! Finally some validation. Now we can move forward...Yeah!!!