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XMRV vs HIV and long-term anti-retrovirals

Discussion in 'XMRV Testing, Treatment and Transmission' started by Sasha, Feb 25, 2010.

  1. SunnyGal

    SunnyGal Senior Member

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    Hi Knack, I'm happy to post here how I do over time with betulinic acid. Only you and one other had PM'd me about it so wasn't sure anyone else had any interest.
  2. SunnyGal

    SunnyGal Senior Member

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    Update on my betulinic acid protocol

    I just got my updated Plant Stem Cell (PSC) protocol update from my doctor. I speak to her tomorrow about it but thought I'd share the info that I have so far. You may recall that after I started on betulinic acid (one of the PSC products I'm on that was supposed to specifically help address XMRV) my white blood cell count crashed (infected white blood cells killed off?), and my doc had me cut back on all of my bug killers, including the PSCs, by half for two weeks. Now my doc is adjusting the PSC part of my protocol to take into account my recent blood work where I had the crashed WBCs.

    In the new PSC protocol that I just received my doc has added grapevine PSC and says specifically that it's for XMRV. It says it's a powerful anti-inflammatory and anti-viral, among many other things it's supposed to do.

    I will be going back on the full dose of betulinic acid as of tomorrow as well which I'm happy about as I think it was helping me. As this is all very new I'm sure there will be further tweeks to my protocol going forward. I'll post if there's any more interesting info from my meeting with my doc tomorrow.

    Sunny
  3. Hope123

    Hope123 Senior Member

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    Yeah, I agree. I think Cheney said this during the talk with Mikovits but I don't think they should have framed it in this way because too many assumptions are being made on little evidence. The only way they can answer this is to do a large enough population based study. The blood donor studies give some preliminiary ideas but researchers don't actually know about the health of the inidividual blood donors tested. It's an assumption that they're healthy.
  4. Navid

    Navid Senior Member

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    so interesting sunny...thanks for sharing, and please let us know what you learn tomorrow.

    tx, lisa
  5. Navid

    Navid Senior Member

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    sue

    sue:

    are you going to try it
    if so, alone or w/azt
    exciting if there are finally some ppl trying different treatments that may alleviate our symptoms and bring us back to healthy :Retro smile:

    take care, lisa
  6. SunnyGal

    SunnyGal Senior Member

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    Sue, just wanted to let you know, since you asked previously, that I saw my doc yesterday and he did mention AZT to me. The first thing he said when he walked in was that he was really looking forward to putting me on medications for XMRV (I found out later in my appointment that he believes XMRV is my primary issue). I asked him if there were any meds now that he's considering and he mentioned AZT. It didn't sound like he has put anyone on it yet (I'm guessing he's had no one interested in it) and I brushed his suggestion off because at this point I'm not willing to try it. But, it did sound like if I had been interested he would have entertained the idea of giving it to me.

    Please let us know if you hear back from Dr. Mikovits about Peptide T.

    Hang in there, Sunny
  7. christine

    christine Guest

    chemotherapy and cfs

    I was glad to read your post. I am severely ill with ME and recently underwent a mastectomy for invasive breast cancer. My sentinel lymph node biopsy was positive, which means more surgery to remove the rest of the nodes.

    Could you share a bit more about your level of disability at the time of chemo, and how the chemo affected you in more detail? I think I am too sick to even consider it. (My Karnofsky Performance Scale is 40; I am bedridden and require in-home care several hours/day).

    Thanks,

    Christine
  8. Noreen Martin

    Noreen Martin

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    Haart for xmrv

    Maybe I can address this. I have suffered with chronic fatigue and fibromyalgia for over 30 years. Almost six years ago, I developed full-blown AIDS. During this time, I have been on and off the AIDS medicines or HAART. I discovered while on the medicines, my symptoms of chronic fatigue and pain from fibromyalgia completely disappeared to my astonishment. To add conflict to all of this, I am an AIDS rethinker and do not believe that HIV causes AIDS. Nevertheless, the HAART did stop all of my chronic fatigue symptoms and fibromyalgia Low and behold, XMRV comes along, which could explain the cause of the other two diseases and why the HAART works so well with these diseases. My personal experience, being on and off the AIDS meds about 4 times, I never could shake or build up any kind of immunity against the chronic fatigue or the pain of fibromyalgia. In fact, each time off the meds, I had no opportunistic diseases, which are usually associated with AIDS and especially associated with those who don't take their meds. I attribute my health during this time to a wonderful immune enhancing drug, low dose naltrexone, LDN. However, the symptoms that would always come back when not being on the HAART was extreme exhaustion and pain, due to the other diseases flaring up again.

    If one takes the HAART, I personally would recommend protease inhibitors or the newer class of AIDS drugs and not AZT, which is a failed cancer drug from the sixties, which was given to AIDS patients in the early 1980's. This drug killed most who were given it and California has recognized that it is a cancer causing agent, so be careful. To be honest with you folks, some AIDS medicines are better than others. I have been on 4 different sets, and some caused diarrhea, nausea, turned me greenish yellow, elevated liver enzymes, and anemia. Note, I finally found one that doesn't cause me problems, Atripla, a combination drug of 3 antiretrovirals. In fact, all my lab reports are in the normal range, for the very first time ever! When it comes to these meds, one size does not fit all, but if one can find the right one, you will be free of fatigue and pain, which to me is wonderful for a change!

    Many will have a hard time convincing their doctors to prescribe AIDS medicines without being HIV+ or a ton of studies being done, which will be unfortunate for those who suffer. Maybe a test for the XMRV at VIPdx in Nevado would help. I am in the process of having this done, but one must stop the HAART for this and other immune tests that they offer.
  9. gracenote

    gracenote All shall be well . . .

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    Santa Rosa, CA
    Noreen Martin,

    Thank you so much for posting. And welcome.

    You have so much to offer us. I hope you can participate with us and continue to share your experiences.
  10. leaves

    leaves Senior Member

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    Wow this is so Helpful Noreen
    Thank for posting this!!
    So I am xmrv + what do you suggest I do? Convince my dr for giving me Haart or wait or ..? How long did it take for your fatigue to diminish?
  11. Noreen Martin

    Noreen Martin

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    Thank you, I will be glad to help in any way that I can. I have been through the mill so to speak and have had a lifetime of immune diseases, and keep on searching for answers. I never believed that I was just unlucky, there has to be reasons for everything. So, I was very excited to hear about the XMRV, as this might answer some of my problems in life. I am also being tested for other issues such as mycoplasma and RNase-L Dysfunction, so maybe I can have some peace of mind for all of my medical problems. Being able to communicate with others who understand what one goes through is also encouraging!
  12. Noreen Martin

    Noreen Martin

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    Great news in one regard, at least you have some answers. First, and formost, you have to find a doctor that you can work with. My philosphy is that you will never be any better than the intelligence of your doctor. So if he or she is closed-minded, then move on, Next! All of my physicians are great to work with because if I don't like them, their attitude, believe me it's easier to find another one. I have great relationships with all of mine. I respect them and visa versa. I am an educated patient and don't mind speaking my mind. We don't always agree but we can live together. Remember, I have to build life-long relationships with them due to my illnesses.

    Next, get your ducks in line, meaning know as much about your problem, XMRV, etc. as possible. Let them know that you know your stuff, cut to the chase, as their time is limited in the first place. Show the doctor the lab report and discuss what the on-going treatment options are. I do this all the time. I have a PA, who works with me, he is clueless to all of these tests that I have ordered but he listens and knows my involvement is real. I email my AIDS doctor and he is aware of my thoughts and all my tests, etc. As the saying goes, there are 2 people to be honest with, your attorney and your doctor.

    I know what I would do, of course, depending upon the symptoms, how long I had suffered, etc. Every situiation is different and always remember that it is your life and you make that call. Sometimes you have to defy mates, doctors, family but be true to yourself. If I was in great pain or fatigue and had exhausted all options, then I would go for it. Remember, you live in your skin, you know what your quality of life is. Judging by my past experience, it will be awhile before doctors freely prescribe HAART for other diseases. Most will not without studies. I will give you an example, I have been on LDN, one of the safest drugs on the planet, yet most doctors that I have seen will not prescribe a drug that has been around for over 25 years. So all of you folks, need to get ready for being turned down. Unless the FDA does some sort of fast-track, I don't see this happening very soon. Right now, they will even debate if this virus is related to these diseases. I don't want to burst a hole in your balloon, but I see how the system works.
  13. leaves

    leaves Senior Member

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    Thanks again :) *gives hugs*
    I am actually on LDN right now, just started. Makes my mind fog worse it seems?
    Actually, despite my xmrv test, Im still not sure whether this is the cause, or just a bystander. I still am not sure.So intend to wait untill they figure it out, but then again. SO ready to feel better. Also just scared, scared of getting worse, scared of damaging my health or making the virus resistant, scared of taking that kind of medicines.But could you tell me please; did your fatigue and cognitive probs (if any) improve within weeks/ months after you started HAART?
  14. Noreen Martin

    Noreen Martin

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    Taking LDN is great, as it has certainly helped so many with numerous immune diseases. Maybe the fog is from something else, as far as I know the only know side effect from LDN is vivid dreams in one when one first starts it. I have been on it over 4 years and attribute it to not having the opportunistic disease that most AIDS patients have. I don't know what you have tried. If it is fatigue, well, the only other thing that helped me was steroids, but I had a 20 pound weight gain and only my rheumotoid doctor would even prescribe then in the first place due to my immunity. Most doctors will not prescribe steroids longterm. If it is pain, well, you have some real issues because LDN blocks all but 2 pain medications, which I found didn't work anyway! Unless over-the-counter products such as Aleve or Advil work, then LDN will be problematic because it uses the receptors that most of prescription pain medications use too.

    I usually have fast relief from pain and fatigue on the meds, say within a week.

    Have you had other immune tests? I don't know your diagnosis or medical history. You could also go to Diagnose me. com and take an extensive 800 or 900 questionaire test, costs about 25 dollars. The computer will spit out what it believes you need to be tested for, so me honest with the questions. This is how I got introduced to fibromyalgia, although, I had symptoms for many, many years but knew not what I had. The computer told me to get tested for fibromyalgia, and low and behold, this is what I had.
  15. Noreen Martin

    Noreen Martin

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    Let me add my two cents in, as an AIDS patient, who has been on and off the meds over the years, who also suffers chronic fatigue and fibromyalgia, staying on the HAART does squash the symptoms of both diseases. I came off the medicines because I was an AIDS rethinker, meaning we do not believe that HIV causes AIDS. However, each and every time that I did this, all of the symtoms for chronic fatigue and fibromyalgia would come back. Each time, it seemed like the symptoms got worse. Being an AIDS patient, one would expect that I would have opportunistic diseases while off the medicine, but I did not, probably because I was taking low dose naltrexone, a wonderful immune enchancer.

    All this time, I could not understand why these medicines worked so well for non AIDS problems. Now I know. A totally different virus was in play, which for me is great news, as I can finally make some sense to all of this. But to answer some of your folks questions, stopping the HAART is of no benefit. I never could squash or develop any kind of immunity for these two diseases. Taking the medicines is my only alternative, except for steroids, which no doctor in his right mind would place me on them longterm.

    In theory, there are natural herbal anti-virals and products such as fulvic or humic acid, but I cannot say how effective they are. Yes, you may be taking on other risks associated with the HAART. The rethinkers believe that the HAART causes liver failure, cancer, heart attacks, and kidney failure. Honestly, I don't know anymore. Maybe other health issues come into play, as many of these patients have numerous health issues or maybe, as suggested, other viruses, etc., life-style issues contribute to their health. Remember, everyone on these medicines are monitored every 3 months so to check the effectiveness of the meds and to prevent problems. The protease inhibitors, the newer class of medicines, are better than AZT, which has a horrible track record. One would have to work with the doctor to find a combination drug that would work, if one decides to go that route.
  16. Noreen Martin

    Noreen Martin

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    Hi Sue,
    Ok, no, I have not been HIV-, I am HIV+ had full-blown AIDS with numerous opportunistic diseases and nearly died by the time that I got to the infectious disease doctor. My own experience has been that all the different drugs that I was on stopped these symptoms. I believe that the key is to be on a protease inhibotor of some kind, excluding AZT!

    If I come up positive for XMRV, then I do not wish to do anything different in regards to my meds. I just need to know what has caused my problems over the years. I think that one will never be fully recovered but being on the meds will control the symtoms. I always notice improvements in a very short time, say after a week.

    I am having the RNase-L test done because I have had other viruses too that HIV and maybe even XMRV won't explain. However, I did test negative for the HHV6 virus, which had been related to AIDS.
  17. Noreen Martin

    Noreen Martin

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    Let me explain how the HAART work, it is never given by a single pill. I take Atripla, but it is a combination of medicines in one pill. Now, concerning chronic fatigue, fibromyalgia, etc. I really don't know how they will approach these diseases. With the drug industry involvement, meaning wanting to make new, expensive drugs and the testing involved, studies, etc. I can see a long time process here. Unless, a doctor is willing to prescribe AIDS medicines off-label, which to me, may be problematic due to the fear of law suits.
  18. Noreen Martin

    Noreen Martin

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    Well, I am a very strong person, as I have had to be over the years with all of my health issues. You see, I have had every thing literally from A to Z, including cancer. The old saying, that whatever doesn't kill you, makes you stronger, is certainly true in my case. Add to the fact that I am an AIDS rethinker and have had to fight the establishment, including doctors and my mate, just adds to the mix. I am tough but fair and will change my beliefs when given new information. At the time of my diagnosis, I was relieved to finally find out why I was so sick and dying. At first, knowing nothing about AIDS, I believed in the mainstream. However, upon further research into it, I discovered that 2 and 2 didn't equal 4 in this case. Be that as it may, I have come full circle concerning the drugs, because they do help with other health issues, so to me there isn't any conflict in my mind as to why I am on them.
  19. Noreen Martin

    Noreen Martin

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    About the issue of XMRV, a lot of things in life depend upon how you will view them. Be glad that maybe you will have answers and then can possibly get some treatment. To me, nothing is worse than not knowing why you hurt, are tired, etc. Many times when the mainstream can't find answers, they want to say that it is in the patient's head instead of recognizing their own limitations to finding and resolving problems. Overall, the frustration over the years of knowing how I felt but not getting the proper help was awful! Hopefully, now, gigantic progress will be made in numerous immune diseases!
  20. Knackered

    Knackered Guest

    Who diagnosed you with CFS, ME, Fibromyalgia and AIDS? And why did they diagnose you with AIDS if you've never been tested possitive for HIV? Have you ever thought you don't have AIDS and maybe it's just XMRV?

    If you think you have AIDS why on earth do you stop taking your medication?

    How do you decide which condition is causing each particular symptom?

    To me, it sounds like you've had some AIDS symptoms, tested negative for HIV and convinced yourself you have AIDS without HIV.
    When I've looked at HIV/AIDS symptoms they're similar to mine and other people with CFS.

    What you have discovered by feeling better when you have taken anti-retrovirals could be serendipitous, maybe they're working on XMRV?

    Get tested and find out.

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