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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. tonydewitt

    HTLV-1 Reservoir treatment!

    News from Japan regarding the use of an old drug to treat HTLV: Nervous System Disease: A New Outlet for an Old Drug - August 15, 2013. The disease goes by the lengthy moniker of human T lymphotropic virus type I (HTLV-I)-associated myelopathy/tropical spastic paraparesis or 'HAM/TSP' for...
  2. tonydewitt

    HTLV-1 Reservoir treatment!

    Here's an article that proves that a seronegative B chronic lymphocytic leukemia patient had HTLV, as evidenced by using a rat to prove seropositivity - this is very important for realizing that HTLV does not generate seropositivity in many people! Imagine if we all tested positive using this...
  3. tonydewitt

    HTLV-1 Reservoir treatment!

    People, This week an article was published claiming the cure of HIV in two Kenyan people using Methotraxate, which is also in the SAME CLASS (i.e. antimetabolites) as Azacytidine. Again this supports Louis Mansky's paper that Azacytidine could cure HIV, and the living cure of the HTLV patient...
  4. tonydewitt

    HTLV-1 Reservoir treatment!

    Human T-cell leukemia virus (HTLV) type I-related endogenous sequences (HRES) have been cloned from a human genomic library. HRES-1/1 is present in DNA of all normal donors examined. By nucleotide sequence analysis, HRES-1/1 contains two potential open reading frames capable of encoding a p25...
  5. tonydewitt

    HTLV-1 Reservoir treatment!

    Daff, I'd say that no matter how they slice the pie, HTLV can cause cancers: (1) Non-Hogkins Lymphoma (NHL) (2) Mycosis Fungiodes (MF) (3) Adult T-cell Leukemia (ATL). (4) Histiocyte-rich large B-cell lymphoma (e.g. a woman on the HTLVhelp face book page). Because doctors are in denial...
  6. tonydewitt

    HTLV-1 Reservoir treatment!

    In the vein of helping each other, I want to tell you that I began taking a new supplement a few days ago that has made me feel better (i.e. reduced pain and stiffness) - it's 5 dollars a bottle on the Swanson Vitamin site: Swanson Premium Full-Spectrum Chinese Skullcap Caps 90 400 mg Caps...
  7. tonydewitt

    Is it a new disease or its CFS ?

    urraco2012, I agree - Of course HTLV cannot be transmitted by casual contact - it requires unprotected sexual contact, blood contact, or breastfeeding. That does not mean that everyone here who became ill after an unprotected sexual contact doesn't have HTLV - that is a spurious conclusion...
  8. tonydewitt

    Is it a new disease or its CFS ?

    RealConcern: 1. Where in the USA are you located? Im in NJ near NY. 2. You & I have / had ALL the same symptoms, especially low body temperature, rectal mucous, etc. 3. I believe that we have HTLV - you can contract it by giving oral - I know because I infected two women that way (without...
  9. tonydewitt

    IDENTIFICATION OF A NOVEL RETROVIRUS IN PATIENTS WITH BPH

    Speaking of "immunosuppressive panacea", here is some GOOD NEWS!!! Here's an article in TODAY's news - Xeljanz / Tofacitinib has been approved! Now HTLV sufferers can begin to treat their symptoms with this novel JAK inhibitor! Please try a one week dose to see if it helps! Pfizer says the...
  10. tonydewitt

    IDENTIFICATION OF A NOVEL RETROVIRUS IN PATIENTS WITH BPH

    My understanding is that several Leukemia Viruses exist (Simian, Human, Bovine, Murine, Feline, etc). The human version jumped from apes to humans 100,000 years ago, and perhaps the mouse version has jumped to humans as well (more recently, as is the case is HIV). My belief is that all of these...
  11. tonydewitt

    i think i got XMRV

    The "plus you die from it" point deserves more examination - I believe X's point was people die sooner and perhaps more horribly from HIV, which puts HIV into the spotlight, but GG's point is valid as well, having something that makes you not want to be alive is a bad thing also. The sugar...
  12. tonydewitt

    Is it a new disease or its CFS ?

    Hello Omar, Thank you for your fast & detailed reply - you certainly were tested for the components of HTLV - I'm going to eventually need to go down the same road as you & get the same done for myself. Unfortunately, the 3 HTLV antibody tests that I took and the one HTLV PCR test that I took...
  13. tonydewitt

    Idiopathic CD4 Lymphocytopenia

    Please keep in mind that Tofacitinib will be officially approved by the FDA on November 21st, 2012. Although it is being used for arthritis, colitis, and psoriasis, it has been proven active against HTLV (and hypothetically XMRV). Best wishes.
  14. tonydewitt

    Is it a new disease or its CFS ?

    Omar, I've been through pretty much the same as OverStressed, and like him, I suspect it's HTLV. Also, like OverStressed, I had elevated liver counts (and liver pain). Also like OverStressed, I got tested with both the HTLV antibody and PCR tests. When I read that you had a HTLV test with...
  15. tonydewitt

    HTLV-1 Reservoir treatment!

    Regarding inhibition of the previously mentioned interleukins, Tofacitinib is about to be approved by the FDA, which is a JAK inhibitor, which should disrupt the HTLV (and perhaps XMRV) life cycle.
  16. tonydewitt

    HTLV-1's replication: Perhaps it can explain XMRV's low degree of mutations

    Regarding your question about different JAKs, JAKs 1, 2, and 3 exist, but surprisingly Tofacitinib did as good a job of inhibiting all three as did separate inhibitors per JAK.
  17. tonydewitt

    HTLV-1's replication: Perhaps it can explain XMRV's low degree of mutations

    JAK's are Janus Kinase, and the attached diagram (assuming that I can attach it) shows how interleukin can be stimulated by JAK to provide survival of HTLV infected cells. Inhibitors of JAK should allow those HTLV infected cells to die, which should help greatly in people suffering from HTLV...
  18. tonydewitt

    HTLV-1's replication: Perhaps it can explain XMRV's low degree of mutations

    The FDA is close to approving Tofacitinib for the treatment of Rheumatoid Arthritis (RA), but more importantly, the drug has been shown to be effective again BOTH disorders caused by HTLV, ATL and HAM (see article below). Therefore HTLV sufferers can tell their doctors "I have have arthritis"...
  19. tonydewitt

    HTLV-1 Reservoir treatment!

    Good news for people suffering from HAM/TSP: Bioniz (a company located in Lake Forest, CA) has technology that can simultaneously block the cytokines that are critical in this disease, replacing the need for multiple monoclonal antibody therapies. Bioniz lead peptide, BNZ-γ, selectively inhibits...
  20. tonydewitt

    HTLV-1 Reservoir treatment!

    I just did a quick web search for "cost of HTLV test" and found that the StdLabTests lists the test for $117: Human T-Cell Lymphotropic Virus I, II (HTLV-I/HTLV-II) Antibodies Price: $117.00
  21. tonydewitt

    HTLV-1 Reservoir treatment!

    That makes both of us Daff - I'm a little miffed at the medical authorities who say that a bone marrow transplant is risky, but are completely okay with people being crippled with myelopathy or dead with leukemia from HTLV or HIV.
  22. tonydewitt

    HTLV-1 Reservoir treatment!

    I don't know if you've seen the news, but they claim to have cured TWO MORE people of HIV using chemotherapy & a bone marrow transplant. This was the same approach used in the treatment of the patient in Greece who was cured of HTLV. So interestingly, both HIV & HTLV (retroviruses) are treatable...
  23. tonydewitt

    HTLV-1's replication: Perhaps it can explain XMRV's low degree of mutations

    That agrees with the reference that OmerBasket provided in the beginning.
  24. tonydewitt

    HTLV-1's replication: Perhaps it can explain XMRV's low degree of mutations

    Omerbasket - I love your original post and find myself reading it again & again. Overstressed - the typical test for HTLV is the antibody test, the "more sensitive" test is for HTLV is the PCR test.
  25. tonydewitt

    T and B Cell Screen

    A guy with HTLV in Italy is pursuing hyperthermia (heating the body to 108 degrees F for three hours) as treatment for him & his wife & daughter - he had gotten a fever after a urinary tract infection and noticed that his symptoms lessened for a year! A published paper by a Japanese doctor named...
  26. tonydewitt

    i think i got XMRV

    X, I've been asked that HTLV question multiple times - my first guess is that at some point it was decided that HTLV was limited to places like Japan, South America, and the Carribean, and couldn't become a worldwide epidemic of 25 million people. My best guess is that HIV takes the spotlight...
  27. tonydewitt

    i think i got XMRV

    Mel, I have to say that I have seen the "teethmarks on the tongue" complaint so many times that I'm curious as to what that means too - if that was my only health problem, I wouldn't have a care in the world!
  28. tonydewitt

    What is a High Sedimentation Rate for Someone with CFS?

    OverStressed, I just had another HTLV antibody test (7 months post exposure), which came back negative. You & I have symptoms of HTLV, as do many people at your medical center, as do people on this site, as do people on other sites. Is this some gigantic epidemic, or a coincidence? How long...
  29. tonydewitt

    What is a High Sedimentation Rate for Someone with CFS?

    Daffodil, Thanks for the information on Mr. Engnath - I wish he were on-line so his efforts could utilize the Internet. Best wishes.
  30. tonydewitt

    What is a High Sedimentation Rate for Someone with CFS?

    Mel, I'd like to find the responsible party for the HTLV denial, since it's so pervasive - no mention of HTLV, no testing for HTLV, no diagnosis for HTLV, along with the belief that people from endemic countries don't travel to non-endemic countries (like the USA) and spread the disease. North...