AZT for XMRV Group

Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Nov 22, 2009.

  1. ladybugmandy

    ladybugmandy Member

    hello. lets start a thread just for people who are thinking of starting (or have already started) AZT for XMRV.

  2. heapsreal

    heapsreal New Member

    i think this is a good idea, as well as maybe other aids/hiv retrovirus treatments. While scanning the net , I know alot on online pharmacies sell these drugs and they are alot cheaper then antivirals. I am going to a University here in australia to participate in a study on cfs. The person runinng the study has connections with Nancy klimas, so Im hoping to find out more about xmrv. The study was originally to find a better way of diagnosing cfs, but this was pre xmrv, so fingers crossed that blood tests they do they test for xmrv.

    Im uncertain about most of this but if i find out i have xmrv but know treatment is offered, i will consider treating myself and or talk it over with my cfs doc, who is very open minded.

    A quick search of retroviral drugs-
    epivir(lamivudine) 100x100mg $84, dosage is 150mg twice a day

    combivir(combo of zidovodine300mg/lamivudine150mg) 60pills $85

    I dont really know much about toxicity and side effects at moment, more googling research, but the availability and price wont stop me, no script required.

    Maybe those with friends who have aids maybe able to tell us more about drug side effects etc.

  3. TigerLilea

    TigerLilea Active Member

    You need to be really careful when ordering prescription drugs from an online pharmacy. Even though they claim to be Canadian or American, a lot of these pharmacies actually operate out of Europe with the products originating in China. And you aren't always getting what you think you are.

    In Canada, it is illegal to import prescription drugs into the country.
  4. ladybugmandy

    ladybugmandy Member

    i am pretty sure you need prescriptions for those aids drugs! if they are selling them without a prescription, i would be very careful about what you could be getting!

    dr. mikovits does not think the HIV drugs will work for XMRV...i think AZT is the only option at the moment.

    thank God AZT is cheap!!

    best of luck!
  5. spacee

    spacee Member

    If one reputable researcher can put out an article about it, my doc would probably rx it.

    BUT, I have developed autoimmune in the last two years...that might make him back off.

    I need to do some googling about HIV/AIDS/autoimmune.

    I do have the low t-cell count in my favor and a positive retrovirus from 1991,

    [This Message was Edited on 11/22/2009]
  6. ladybugmandy

    ladybugmandy Member

    may i ask which retrovirus you tested positive for in 1991??

    thank you
  7. spacee

    spacee Member

    The Cheney Clinic has never responded to my request for which retrovirus they were testing. A friend a WPI on Facebook found this link and I think it is the answer. I will quote Dr. Cheney in an article printed Oct 9, 2009 published by his site called Public Relations.

    "While practicing in Charlotte, NC and based on continued evidence of unusual immune disturbances by flow cytometry including CD4 depletion (ICL) [what I was studied at the NIH for] in 15% of CFS patients which was investigated in my clinic and dismissed by the CDC as clinically irrelevant and continued high RNAse-L activity (1994), I contacted Elaine DeFreitas PhD at the Wistar Institute who ultimately found HTLV11-like genes associated with CFS (1991).

    So, I am assuming that I tested positive for HTLV11 retrovirus.

  8. ladybugmandy

    ladybugmandy Member

    hi spacee...i wonder if you actually have XMRV and not HTLV11...because they said "HTLV11-like". i dont think they completed the gene sequencing, though i could be wrong.

    i don't think it's legal to test your blood for something and not tell you what it is!

  9. spacee

    spacee Member

    Thanks for your input...sound logical. Yes, it was weird that it was put in the notes that I tested positive for the CFIDS Novel Retrovirus but nothing was said to me about it. Weird. I was seen at the office only one time and then followed up with phone consults for a couple more times. My pcp when I got back from the NIH said "be very glad you don't have a retrovirus". I didn't say anything. It was too close to all that went on with HIV before they had the meds for it. I was worried that I would be thought of a infectious in this small town.

  10. spacee

    spacee Member

    It said that HTVL was associated with lymphoma. My friend who became ill when I did (oddly we lived in different states at the time) developed lymphoma. She went throught chemo and bone marrow but she survived. She is still ill, her son has FM.

    Also, I saw an uncle at my grandmother's funeral. First time in about 15 years. Two years later he died of lymphoma and a couple years after than his daughter (my cousin) was disabled with FM.

    All of that is really terrible. Doesn't it tell you how casually whatever I have is passed?



  11. denis321

    denis321 New Member

    you. I believe your blood sample ended up in DeFreitas' article below. If I recall right, some of the blood came from North Carolina.

    Also, what is interesting about this study is that about 30-40% of family members/ friends of people with CFS were positive for the HTLV-II-like virus as well which makes me think if it is transmissible, it's casual contact and also, not all people with this virus get sick (which we've thought all along anyway). So I would not at all be surprised if WPI future studies show a fair percentage of healthy exposed controls with the virus. The current WPI study used UNEXPOSED controls.
  12. ladybugmandy

    ladybugmandy Member

    everyone knows casual contact can spread it...the idiots just dont want to create a would be a HUGE panic...

    wonder if they have begun screening blood for the virus. they would be risking a lot of lawsuits if they haven't...

  13. ladybugmandy

    ladybugmandy Member

    hi all. just ran into a woman on one of the other message boards ( who said she has been taking AZT since the XMRV news became public. she has been steadily improving.

    this is the first person i have talked to so far who has tried an antiretroviral. i have asked her for details...

  14. kat0465

    kat0465 New Member

    Thats wonderful Sue!! the more you research the more you give us all hope.
    theres so many Aids drugs out there, thers gotta be some we can start with. so keep digging!

    I have always been scard to try new drugs, but since the whole XMRV thing, i am now willing to try anything my Dr migt want me to, and the soonr the better. the whole retro virus thing freaks me out, i don't want to give it any more hold than it already has, thats for sure!
  15. ladybugmandy

    ladybugmandy Member

    i agree. after almost 18 yrs God knows what damage i have.

    you can get all these diseases from the inflammation, bone marrow damage, cardiovascular damage, lymph node atrophy etc etc...

    what a HUGE mess

  16. Svette_Palme

    Svette_Palme New Member

    AZT drugs are not without side effects, and long term they can be very debilitating. Do not take them without considering what it might cost you {"first do no harm", even if you are trying to be your own doctor!!}

    Quotes found online:
    "Diagnosed with HIV, she was prescribed AZT. Within a year she was in a wheelchair (as was Rudolf Nureyev toward the end of his life, and he, too, took AZT). Among its other side-effects, AZT causes myopathy, or muscle atrophy."

    [google "AZT long term side effects", and you will get many results]
  17. denis321

    denis321 New Member

    It's amazing what the collective efforts of people can find.

    I agree re: AZT. My doc is an HIV specialist and says that the dose of AZT used was much higher back then compared to now and the side effects were worse. We're not going to jump into using it for me right now but my doc doesn't think it's a terrible drug.
  18. lisagra

    lisagra New Member


    i live in sf bay area...a place w/many fine hiv/aids docs and researchers. i would love to find one of these docs who is also interested in xmrv.

    where is your doc located? what kinds of retroviral treatments has he discussed with you.

    thanks for sharing.

    regards, lisa
    [This Message was Edited on 12/06/2009]
  19. ladybugmandy

    ladybugmandy Member

    raltegravir can cause its new.

    the fact that i found a doc willing to give me azt in toronto (where they do nothing for CFS and rarely prescribe experimental meds) tells me it might not be that dangerous at today's doses. he just said he would have to follow bloodwork carefully.

    i am also happy about it being a very old medicine.

    it isn't the best thing to do for people who are early in their illness, but i am taking it no question.

    just hope i have XMRV...and that my liver or whatever doesnt reject the AZT....:-/


  20. richvank

    richvank New Member

    Hi, Sue.

    I understand your position as you've described it here over the past few months, and I have been praying for you. If you do decide to consider treatment with AZT, I just want you to have the facts. Here is the "black box warning" that the FDA has put on AZT:

    The following is a quotation from the 2008 edition of the Physician’s Desk Reference, page 1560, under Retrovir (zidovudine) [also known as AZT]: