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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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Search results

  1. JT1024

    MGH or Brigham & Women's Experience?

    Not sure if this was posted before but Dr. Systrom is now working with the OMF group as are several others. October 10, 2018 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Collaborative Research Center at Harvard, funded by OMF We are proud to announce the establishment of...
  2. JT1024

    long term Lyme disease infection, Immune supression, B Cell AIDS theory

    I disagree with your definition of AIDS... Below from the Merck Manual: https://www.merckmanuals.com/professional/immunology-allergic-disorders/immunodeficiency-disorders/overview-of-immunodeficiency-disorders Immunodeficiency disorders are associated with or predispose affected patients to...
  3. JT1024

    List of various recent interviews with Judy Mikovits

    I will state again, I believe/know Judy M was on to something significant. I watched live via web while the NIH/CDC/Blood Working Group and other interested parties worked through "XMRV". I cannot answer each post above. The issue is not "XMRV".. it is the fact that recombination of viruses...
  4. JT1024

    List of various recent interviews with Judy Mikovits

    "Science" today is as tainted as the media is. When someone says "science says" or something is settled, I do not believe it. Believe what you want but I believe Judy was destroyed/ostracized because she was on to the truth and others had vested interest in burying the truth.
  5. JT1024

    Connective Tissue Problems?

    I definitely have connective tissue problems. My fibromyalgia started after muscle imbalance due to over training back in the 90's. Physical therapists were the ones to first suggest Fibro. They performed myofascial release to release fascial restrictions but the restrictions would return the...
  6. JT1024

    Doctor near Lebanon New Hampshire

    Another option in West Lebanon, NH that appears new is Grassroots Functional Medicine. Just learned of them so I know nothing more. Website is here https://www.grassrootsfunctionalmedicine.com/ Facebook has recent info : https://www.facebook.com/grassrootsfunctionalmedicine
  7. JT1024

    Anyone in the Boston area know of a good specialist..

    Dr. W. Alex Bingham in Waltham is wonderful!
  8. JT1024

    Most accurate lyme test

    I used Igenex in the past. Has a good reputation as far as I know. There is another test that is being used in the Big Data study at OMF/Stanford. It is the Lyme Nanotrap Antigen Test... link here: http://www.ceresnano.com/nanotrap-lyme-test ILADS has a good document authored by...
  9. JT1024

    Famvir- my story

    Curious if anyone with insurance in the USA was able to have antivirals like famciclovir covered by insurance for the duration prescribed by their doctor. My doctor prescribed famciclovir with Celebrex... to try and follow Dr. William Pridgen's Phase II clinical trials. My doctor would...
  10. JT1024

    Angry Emails to the NIH -- Good or Bad? (Split thread)

    This thread was a lot of material to digest... Recent communications with the NIH is not unlike dealing with anything else of great importance. Case in point, Congress, the 2016 election, etc. Representatives communicate for the benefit of the individuals (patients or citizens). When...
  11. JT1024

    Pridgen Granted FDA Fast Track Designation For His Fibro Med Combo

    I actually tried Dr. Pridgen's protocol for a brief period but had to stop because of cost. My doctor prescribed exactly what Dr. Pridgen used and I saw huge relief the first 4 days of use. My insurance would not cover cost for the Famciclovir. I hope to challenge the insurance company when...
  12. JT1024

    Dr Horowitz's take on SEID (Lyme Dr)

    Like many here, I've been tested for Lyme using multiple testing methodologies at several different labs. What continues to amaze me is the diversity of results (B. bergdorferi on one yet B. hermsii on another). With so many ill people, one has to wonder why better tests aren't developed and...
  13. JT1024

    New Court Case: Mikovits v. Whittemore Peterson Institute, The

    Ho Hum.... I could not disagree with you more. There is a reason the Whittemore's have been silent and IMHO, it is not because they are being humble or more righteous. I hope and pray the truth of their deceptions become public. It is sad for me to post that I feel completely censored in...
  14. JT1024

    Dr. Judy Mikovits Interview re: "Plague", WPI etc.

    Judy is still under a gag order. One can only ask why? If she was so wrong, why has she been unable to defend herself? While I want to warn people, everyone must come to their own conclusion.Each member of PR has their strengths and weaknesses. This is the human condition. When people do not...
  15. JT1024

    New Court Case: Mikovits v. Whittemore Peterson Institute, The

    I could not disagree with you more Kati. There are numerous valid reasons for this lawsuit.
  16. JT1024

    New Court Case: Mikovits v. Whittemore Peterson Institute, The

    I am well aware of your claims and your position "Ecoclimber"... I was avoiding it. You can write all you want. I am not buying it. We can agree to disagree. Same story as before. I am walking away... not out of fear of a debate. There is no point in arguing......
  17. JT1024

    Question about immune system testing

    There is substantially more testing that CAN be done. However, few physicians have access to this type of testing unless they are affiliated with a research/teaching hospital. Numerous researchers are evaluating cytokines, genetic expression/epigenetics etc. Immune profiles involving cytokines...
  18. JT1024

    New Court Case: Mikovits v. Whittemore Peterson Institute, The

    Sorry Ecoclimber.... I disagree. I do not have time on Thanksgiving Day to rebut your post above. However, many of us have been around a very long time and remember what transpired over the years. You were here then and you know full well. As I have said in another post, each person on this...
  19. JT1024

    Dr. Judy Mikovits Interview re: "Plague", WPI etc.

    @Kati, I am sorry you will not read the book. There is SO much more going on. Like you, I vote for science and medicine. To that I add integrity and truth. Without personal integrity and a passion for the truth, science and medicine have become tainted by politics, greed, and corruption...
  20. JT1024

    Dr. Judy Mikovits Interview re: "Plague", WPI etc.

    I have not read Osler's Web but I have read Plague. The author of Osler's Web (Hillary Johnson) has written a forward to the Plague. She is supportive of Judy Mikovits and her research. Unlike Heapsreal, I am actually hopeful since I've seen research performed in the last several years that was...
  21. JT1024

    Dr. Pridgen's 9 different cocktail mix patents & research under Dr. Carol Duffy name

    I cannot read the entire thread... I am sorry. I have limited time to be able to read. One poster indicated that the clinical trial to date did not measure up to his standard. #1, this is the US, not the UK. Not sure if there are differences in approvals of drugs but it is to be considered...
  22. JT1024

    Fundraising for Dr Lipkin's study.

    For some reason, Dr. Lipkin's project Microbiome hasn't hit me as something worthy of investing in. I've had minimal faith in many researchers given what has transpired in the last 5+ years. I hate politics and I am not a fan of researchers with vested interests publishing data that could be...
  23. JT1024

    Dr. Pridgen's 9 different cocktail mix patents & research under Dr. Carol Duffy name

    Just wanted to comment since I have Fibro/ME/CFS and osteoarthritis... Celebrex did nothing for me for my Fibro and my Rheumatologist told me it wouldn't and it wouldn't do anything for my arthritis for several months... no clue why. I've had Fibro for 22 years and probably 6 days in 22...
  24. JT1024

    My Famvir Adventure

    Famvir, in conjunction with Celebrex, has recently been reported by Dr. William Pridgen to be effective in treating fibromyalgia (see below). I have not tried Famvir yet but I have been on Valtrex and Celebrex for the last few months. The first several days on Valtrex (I had been on Celebrex)...
  25. JT1024

    Fundraising for Dr Lipkin's study.

    I am sorry I have not followed this entire thread.. I did read the last several posts. In my opinion, I don't think everyone is behind Ian Lipkin because there are so many theories/research opportunities out there and people are limited in their ability to: keep up with everything, understand...
  26. JT1024

    Phase III trial of antiviral + antinflammatory combo

    While I totally agree with concerns with COX-2 inhibitors everyone has expressed above, I can honestly say I've taken substantially more OTC (ibuprofen) with little to no relief. My initial and current dosage of Celebrex is 200 mg with Valtrex 500 mg, twice a day. I had minimal relief from...
  27. JT1024

    General Survey re: Anti-virals

    Looks like Famciclovir has positive effects when used in conjunction with Celebrex. (See below ********) I've been on Valtrex and Celebrex but suspected the dosage wasn't right. I had enormous improvement when Valtrex was added to the Celebrex. Looking forward to seeing my Dr. again very soon...
  28. JT1024

    Phase III trial of antiviral + antinflammatory combo

    Just posted this on another thread: Results of Dr. Pridgen's Phase 2 clinical trials were revealed at today's American College of Rheumatology conference today in Boston. I was not in attendance but I was informed that it would be today. From the title below, it appears Famciclovir prevailed...
  29. JT1024

    Anyone in the Pridgen/Duffy study? Positive results emerging

    Results of Dr. Pridgen's Phase 2 clinical trials were revealed at today's American College of Rheumatology conference today in Boston. I was not in attendance but I was informed that it would be today. From the title below, it appears Famciclovir prevailed over other antivirals tested. Can't...
  30. JT1024

    Dr. Pridgen's 9 different cocktail mix patents & research under Dr. Carol Duffy name

    The American College of Rheumatology is meeting in Boston over the next several days. Dr. Pridgen is presenting his finding at 4:30 pm in room 104B at the Boston Convention Center. Boston Convention & Exhibition Center 415 Summer Street Boston, MA 02116 Fibromyalgia, Soft Tissue Disorders...