Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Anyone here used HIV/AIDS treatment for CFS?

Discussion in 'General ME/CFS Discussion' started by sorin, Jul 23, 2016.

  1. sorin

    sorin Senior Member

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    Hello all!

    Is anyone here (HIV negative) that used HIV treatment for CFS?
    If yes, please provide what specific medicament(s) you took, what dosage, for how long.
    How you felt during the treatment, and what was the result?

    Thank you
    Sorin
     
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  2. Countrygirl

    Countrygirl Senior Member

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    I have no personal experience of taking antiretrovirals @sorin, but I know others who have and with some marked success. I am informed that two drugs isentress and viread have been used in combination. I understand that they are not taken all the time, but pulsed, with some days drug-free. I also know from the UK grape vine ;):cool: that one well-known doctor is now using ARVs with a number of his patients, although I have not heard how successful he has been, but it is early days. I'm afraid I have little additional information at this juncture, so am not in a position to answer questions.
     
  3. sorin

    sorin Senior Member

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    Looks like this is a taboo topic? Nobody else, except @Countrygirl replied to this. I do not understand why this is considered a secret or kind of occult subject. If one has tried this treatment and worked why not to share with the others? Who is afraid of taliking about this and why? What should be hidden under carpet? To protect who?
     
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  4. Keela Too

    Keela Too Sally Burch

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    It might be that not all drugs are safe to take without careful medical supervision, so maybe sharing drug names, dosages etc. might encourage others to buy & take without proper care. Perhaps adverse reactions due to improper care might then jeopardize funding for a bigger trial??
     
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  5. sorin

    sorin Senior Member

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    Do you know if such a bigger trial is in plan? And if yes, who intend to do it?
     
  6. Countrygirl

    Countrygirl Senior Member

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    Absolutely right, @Keela Too. These drugs must only be taken under medical provision and by the appropriate subset of patients. The dosages and drug combination are tailored to each patient who must be carefully monitored. This is not something a patient can try at home on the off chance it may help. These are heavy duty drugs. We just have to play a waiting game now to see if they are consistently helpful to this subset of patients and hope we don't fall off our perches before we know just how successful these drugs are.
     
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  7. sorin

    sorin Senior Member

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    What I have read about HIV patients, please correct me if I was dis-informed, is that they can take daily this cocktail of drugs for the rest of their lives, sometimes 30-40 years and they can live a normal life, that HIV is nowadays less dangerous than other chronic diseases such as diabetes. Is this true or is just another medical propaganda shameless lie?
    So if that is true this means that since these drugs can be taken 30 years on a daily basis, they are not so harmful?
    If we wait and do nothing while our health situation is constantly degrading and our life is extinguishing - are we sure that this is better than trying to take these drugs?
     
    Last edited: Jul 24, 2016
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  8. Cheesus

    Cheesus Senior Member

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    Which suggests they're less harmful than dying of HIV.

    The problem with taking random drugs that seem to do more benefit than harm in other patient populations is that we have no idea what is broken in ME/CFS or how those drugs might interact with whatever that broken thing is.
     
  9. sorin

    sorin Senior Member

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    That broken thing is immunity.
    I think that CFS and HIV resembles each other like two drops of water. What is different in CFS from HIV or vice-versa?
     
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  10. Cheesus

    Cheesus Senior Member

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    I would say the principle difference is that they are two different diseases which clearly have differing aetiology and pathophysiology. Saying that the immune system is implicated in both is a wildly insufficient basis to inform treatment.

    If you have evidence that they are one and the same I am sure everyone would be very keen to see it. As it stands, however, I am certain that no such evidence exists, and so your belief that they are the same and can therefore be treated the same is unfounded and potentially dangerous.
     
  11. sorin

    sorin Senior Member

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    So you think that CFS and HIV present different pathology. Can you prove this sentence? What conditions during CFS are different from conditions existing during HIV? Please give details.
     
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  12. sorin

    sorin Senior Member

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    I did not say that they are both and the same. My belief (without evidence to support it) is that CFS is a virus from the HIV family, let's name it HIV-3 if you like, or HIV-4, or HIV-n.
     
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  13. barbc56

    barbc56 Senior Member

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    Add to that the fact there are sub groups under one umbrella called me/cfs. This may mean treatments might differ depending on which sub group you belong to. I'm speculating here.

    Now if we could just identify the subgroups!
     
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  14. wastwater

    wastwater Senior Member

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    AIDS destroys cells where as cfs makes them dysfunctional,and the body can overcome this through extra cytokines signalling,the side effects of cytokines make you very ill,is what I thought might be happening.
    Would aquiring a retrovirus make EBV slip out of latency,and how many days would that take?
     
    Last edited: Jul 24, 2016
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  15. panckage

    panckage Senior Member

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    No you just need to make more inclusive questions ;). @ScottTriGuy uses hiv drugs but he has HIV as well. From what I have read I don't believe it has helped his CFS, but you'd best ask him yourself
     
  16. JES

    JES Senior Member

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    It's not a taboo topic, the problem is that it's based on your beliefs without any evidence or even a rational theory behind it. There are plenty of promising theories behind CFS/ME that have at least some academic evidence behind them: gut microbiota, dysfunctional B-cells, mitochondria problems ,enteroviruses in gut, etc... that's already four on top of my head that have significant evidence to at least be contributing factors in CFS/ME. Understandably people are more interested in these real promising findings rather than some 30 year old "CFS is HIV-negative AIDS" hypothesis.
     
    Last edited: Jul 24, 2016
  17. undiagnosed

    undiagnosed Senior Member

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    I can understand your motivation for looking into HIV ART. One obvious reason is that it's much easier to acquire HIV ARV drugs than it is to get advanced testing to rule out a retroviral cause of disease. If you wanted to, you could purchase generic drugs from a foreign online pharmacy today without a prescription. However, I have yet to find a way to be tested for reverse transcriptase activity. In fact there have been a number of chronic diseases that people have suspected may have a retroviral cause as outlined in this paper.

    However, taking such drugs without knowing what you're dealing with poses a significant risk. The drugs can cause significant side effects, some of which require genetic testing or other lab tests to rule out. Also, the drugs may not have activity against the virus or it may be inherently resistant. For example, HIV-2 is inherently resistant to drugs from the NNRTI class and certain Protease Inhibitors. Additionally, even if you had a virus that was susceptible to the drugs, it could develop resistance if you don't take an appropriate combination of drugs. And finally, even buying generic drugs from a foreign pharmacy is still fairly cost prohibitive, many hundreds of dollars per month for older drugs and much more for newer drugs.
     
    Last edited: Jul 25, 2016
  18. Theodore

    Theodore Senior Member

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    Hi Sorin,

    It's true that some people may have been better with ARVs (and it didn't work on some) but it doesn't mean that these people have had a HIV like virus. From what I read, ME/CFS is not immunodeficiency virus. You don't die because the immune system is weak when you have ME/CFS, actually I even read that you don't die earlier.

    Hip said on PR that ARVs have a big spectrum of action, so they also act on herpes viruses. A lot of people have improved with antivirals. Was it because antivirals target retrovirus? I don't think so, rather than because it targets herpes and remodulate the immune system.

    Is an retrovirus implicated in ME/CFS? I don't know but be sure that Ron Davis is doing the maximum to discover whatever is implicated.

    Rose49 said "from Ron: We are testing for ALL viruses, bacteria, funguses and parasites. We are even testing for organisms that have never been seen before by doing elaborate sequence comparisons. First we eliminate the human DNA in the sample. Then we compare sequences of DNA (not human - those are gone) that we find in the individual to every sequence that's ever been done in the entire world. We do not require a perfect match, which means we can find organisms that have never been seen before because every organism is related to some organism that HAS been found. We are using very heavy computational analysis to do this."

    Maybe following his research and read some threads about it would make you feel better.
     
    Last edited: Jul 25, 2016
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  19. sorin

    sorin Senior Member

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    Hi Theodore,

    That is very interesting, thanks for posting this fragment. However, I do not doubt the passionately work and progresses made by some researchers (especially in this era of Cloud and Big Data), but what I am afraid of is the politics that would want to hide these results so we will never know what is the cause of CFS.
     
  20. sorin

    sorin Senior Member

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    Being old does not mean necessary that is wrong. Could be just some politics that managed to keep down under the carpet the findings of some research. Usually politics is stronger that science!
     
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