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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. Xandoff

    Thymosin Alpha 1

    Sorry to Hear this. I have been where you are now. I hope the Thymosin helps you like it is helping me!
  2. Xandoff

    New ME/CFS Research re EBV Continues To Tie Back Into Research Links From the Past

    Thanks Tammy! I had full blown EBV in 1999 and I got caught up in the IDSA-CDC-Denial that it was all in my head. They refused to test me for EBV because that would have begged the question what re-activated my EBV-MONO?. When Lyme re-activates your dormant EBV-MONO it makes everything 100...
  3. Xandoff

    Thymosin Alpha 1

    HI, I don't know much about the Beta 4 for Collagen but I highly recommend the Alpha Thymosin Peptide, I have been with NIM for 9 years. They cured me from 15 years of untreated Lyme and Babesia but then I was re- infected in 15 minutes with Powassan, Ehrlichia and Babesia while I was recovering...
  4. Xandoff

    Thymosin Alpha 1

    My limited understanding is that the Thymosin Alpha 1 Peptide restores and balances your TH-1/Th-2. I am only on my sixth injection but I feel healthy for the first time in a long time. I am know that I healing and it feels great. This is from my post above : Improves Th1 immune responses and...
  5. Xandoff

    Thymosin Alpha 1

    Thanks for the great Information!
  6. Xandoff

    New ME/CFS Research re EBV Continues To Tie Back Into Research Links From the Past

    I knocked down 17 years of chronic E.B.V. with Valganciclovir, Lysine and Monolaurin. I take Solaray L-Lysine and Monolaurin 1:1 Ratio immune support because it is convenient, I take 3 a day and my EBV labs are as low as they go and still be present. There are better Monolaurin sources...
  7. Xandoff

    Thymosin Alpha 1

    I am posting this link by itself. It is an Article from the Madison Area Lyme Support Group about the Peptide Thymosin-alpha-1. It is a great read for anyone who does not know all about it or who needs immune support. This Peptide treats many diseases and this article documents that. Can...
  8. Xandoff

    Thymosin Alpha 1

    That is good to know because I have had Lyme for 20 years. I was reinfected in twenty minutes with Powassan, Lyme, Babesia and Ehrlichia while I was recovering from 17 years of Lyme and TWO years of antibiotics of which I am taking all over again. Great to hear that about the price and that...
  9. Xandoff

    Thymosin Alpha 1

    My Doctor in Western Massachusetts started me on this and I am waiting for my first month supply to come in ten days. I gave myself a shot of Thymosin-alpha-1 in the Doctor's office and I drove 3 and half hours back home to Northeastern Vermont, a trip that usually leaves me exhausted. I...
  10. Xandoff

    SPECT Brain Imaging in Chronic Lyme Disease

    Hi Justin, I think we used to converse on PR but I have a bad memory. I tested positive for Lyme and Babesia Duncanni , I found out the day before Christmas 2013! I know exactly when I got sick, it was 1999 (14 years ago) and I had started a new job in Massachusetts, I live in Vermont. I now...
  11. Xandoff

    Just found out I have active lyme disease. I am stunned. Help!

    I think I caught it in CT over ten years ago but LYME is everywhere, read my short blog that I put up today. You can actually have a Lyme co-infection without having Lyme disease. The co-infections are worse than the Lyme and the babesia that I have just makes everything ten times as bad. I know...
  12. Xandoff

    I tested Positive For Lyme Disease and Babesia a co-infection that is 10 times worse than Lyme!

    I just tested positive for Lyme disease and it's co-infection babesia on 12/24/2013 through IGENEX in Palo Alto California. Babesia with Lyme explains my severe chronic pain I have had for 12 years. Most of the people on PR don't have the kind of pain that I have. I also have Neuro-Lyme which...
  13. Xandoff

    Just found out I have active lyme disease. I am stunned. Help!

    I was just tested last week for Lyme. My Doctor ordered sent the blood work to IGENEX Labs in Palo Alto California for test # 5085 New Western Regional Complete Co-infection Panel which tests for: Babesia duncani, IgG& IgM, Babesia FISH, HME IgG & IgM, HGA IgG & IgM, Baratonella IgG & IgM...
  14. Xandoff

    Generation of replication-competent retroviruses--combining PreXMRV-1 and PreXMRV-2

    This makes sense to me because at the time that I had my blood drawn for the WPI XMRV test I was receiving shots of testosterone trying to raise my low testosterone levels! For what it is worth, the added testosterone did not raise my testosterone levels until I switched to a bio-identical...
  15. Xandoff

    Comment by 'Xandoff' in 'My gut healing and brain fog'

    Brain Fog here....what is SMP? Congrats on your improved health. Thanks
  16. Xandoff

    Leeds NHS M.E/CFS clinic

    Having a very real and terrible illness that is not acknowledged by the medical community puts all of us in a bind and places a big chip on our shoulders. After all these years maybe I could learn to remove that Chip on my shoulder before I see my regular GP. You would think after all these...
  17. Xandoff

    Name change for CFS?!

    BMSS = Broken Medical System Syndrome Perhaps I have BMSS or Broken Medical System Syndrome. It is an exclusionary diagnosis. If you have a Doctor and a patient in a room together and after hearing the patient speak the Doctor rolls his eyes to heaven FOLLOWED by the BMSS patient rolling his...
  18. Xandoff

    Early stages of Valcyte - Should I go to Thanksgiving?

    I am on my second trial of Valcyte and so I have some experience with it. I discontinued after 14 months, then after a year not taking it, I have been back on it for the last four months. I must say that I did not notice any less tolerance to colds ort anything but I haven't had a cold in eight...
  19. Xandoff

    Generation of replication-competent retroviruses--combining PreXMRV-1 and PreXMRV-2

    Does anyone remember the Jacque Monkeys they injected with XMRV? The monkeys later showed XMRV was rampant throughout their bodies and organs during the autopsy. I tested positive for XMRV and I thought there was a lot of conflicting information out there after it was announced XMRV was not it...
  20. Xandoff

    Lyme on my mind

    Watch this movie...you will be glad you did!
  21. Xandoff

    GCMAF - How to get it

    Not that I know of....sorry. I have discontinued GcMAF after 13 months, I would like to continue but can't afford it.
  22. Xandoff

    Improvement in NERVE PAIN!

    Congratulations Jacque! I have been trying to get on subutex myself, please keep us posted on your progress. Very happy for you. I live in chronic pain and nobody knows what it is like. Keep up the positive progress.
  23. Xandoff

    Anyone feel worse with CPAP/BiPAP?

    I was started out wrongly with a CPAP machine and then switched to a Bi-Pap machine. I had such a horrible experience with the CPAP machine that by the time I started using the Bi-Pap I ended up not using it for more than a couple of months. I sleep on my side now and wear one of those Breathe...
  24. Xandoff

    The Onset Poll

    I did have a tetanus booster before I really got ill....... but who knows if it had anything to do with anything!
  25. Xandoff

    The Onset Poll

    On reflection your onset sounds just like mine. Oddly enough it was "metabolic pain" and inflammation that finally brought me down. In 2005 I had a spinal fusion/ cervical discectomy that replaced to discs in my next with a titanium cage and screws. This is what launched my severe and...
  26. Xandoff

    I beg someone to help me

  27. Xandoff

    I beg someone to help me

  28. Xandoff

    I beg someone to help me

    David, I have had ME CFS for ten years now. As a layman I would call this illness a spectrum disorder. Depending on your genes, age and genetics I believe this illness manifests itself differently in any given person. Your low Natural Killer Cells count test is alarming to me if your number...
  29. Xandoff

    Pin the Map - show your global location

    It asks for a password...what do I put in? Sorry Brain Fog!
  30. Xandoff

    Started Equilibrant...

    Sushi, I am so happy for you. Are you still taking GcMAF?