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Antiretrovirals

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Hutan, Jun 11, 2018.

  1. duncan

    duncan Senior Member (Voting Rights)

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    I wonder if this is a rule of thumb for acute illnesses, and if it might be different sometimes for chronic disease.
     
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  2. Inara

    Inara Senior Member (Voting Rights)

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    And why does that say something about if or if not a virus/bacterium is responsible for an illness? And what else does it say? Also it seems the timing might be a difficulty?
     
  3. lansbergen

    lansbergen Senior Member (Voting Rights)

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    In veternairy medecine it was used to check the vacine did what it is supposed to do.

    For illnesses it is more difficult. I was told it is just an indication.
     
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  4. anniekim

    anniekim Senior Member (Voting Rights)

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    As well as JE’s answer to this, I asked about this on Phoenix Rising a couple of years back and two people said the 85% applied to both controls and patients in Montoya’s group. When I read the transcript of Lipkin’s word I think it referred to sample pools and I have never been able to establish whether sample pools included both controls and patients?
     
  5. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

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    Has any one heard if Ron Davis has done enteroviral RNA testing yet?
     
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  6. Hip

    Hip Senior Member (Voting Rights)

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    Cort's latest blog says:
    That sounds as if he has found no evidence of herpesviruses (which are DNA viruses), but has not looked for enteroviruses yet (which are RNA viruses).

    I wonder if he actually tested ME/CFS patients' tissues for the abortive herpesvirus infections which Dr Lerner proposed as a cause of ME/CFS.


    Hopefully Prof Ron Davis knows that the chronic enterovirus infections of ME/CFS are primarily found in the tissues (such brain, muscle and stomach tissues).
     
    Last edited: Jun 24, 2018
  7. Mij

    Mij Senior Member (Voting Rights)

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    I had many viruses tested through RNA/DNA and nothing was found. I was very ill when I had the testing done too.
     
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  8. Amw66

    Amw66 Senior Member (Voting Rights)

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  9. Amw66

    Amw66 Senior Member (Voting Rights)

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  10. Inara

    Inara Senior Member (Voting Rights)

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    Amongst others, I found this interesting:

     
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  11. Woolie

    Woolie Senior Member

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    @Inara, I'm no expert, but I think its pretty widely accepted that viral challenges, and the responses of the immune system to those challenges, play a significant role in the development of autoimmune diseases and related diseases such as MS.

    The big challenges, like EBV, seem to play a particularly major role.

    This doesn't mean that removing any trace of those viruses (even if it were possible) or stopping their replication would resolve the problem, because the problem is no longer the viruses themselves, its the way the initial encounter with the virus impacted upon immune system function.
     
  12. Subtropical Island

    Subtropical Island Senior Member (Voting Rights)

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    As a complete layperson, I’d like to suggest that maybe one reason viral load is less in those who are severely affected is because they are isolated in bed?

    [anecdotal aside: I watched a thing about travelling to Mars (long time isolation with only your ship mates and nowhere to go) and thought that those who are severely affected are among the few to understand a little of what that’s like.]

    I wonder if there were any finding, of difference from the unaffected, in moderates. I assume someone would have said if so.?
     
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  13. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

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    Some questions for those who have / are taking ARVs:

    Dosing:
    Did you start with very small doses and work your way up to the regular dose (low and slow)?

    If so, was it because you are generally sensitive to medications?

    I know some ME folks that are sensitive to meds need to start antivirals low and slow, wondering if the same is true for ARVs.

    Enterovirus:
    Have you been tested for enterovirus? (wondering if some ARVs are also antienteroviral)

    Thanks.
     
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  14. Keela Too

    Keela Too Senior Member (Voting Rights)

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    I started straight onto full dose. I was lucky perhaps not to have a problem with this. I was on the drug for a year but saw most change occur in the first 5 months, then some slower change then some decline last 2 months which eased after stopping the drug. I have kept most of the gains, but not quite all.
     
  15. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    @Keela Too
    Would you mind saying why you were treated with ARVs? Was there some clinical indication or was it the protocol used by the clinician ( I think I remember who you saw) you saw? Did you try antivirals first?

    I ask because I have been taking antivirals for 15 months with no real improvement after an initial hopeful spell. I am 71 and will not see a cure. Each year I lose a bit more functionality- I am starting my third week of holiday in Cornwall and not yet fit to go outside. Will fly home because car travel is now too depleting.
    I need to try whatever might bring me improvement: at least maybe enquire about retrovirals.

    Of course only if you are comfortable with saying. I would settle for 20% improvement if I could get it.

    ED:last but two sentences after colon added.
     
    Last edited: Aug 10, 2018
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  16. Keela Too

    Keela Too Senior Member (Voting Rights)

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    @Binkie4 The consultant I am seeing had a hunch (with good reasons, I thought) that ARVs might be worth revisiting. The whole premise made sense to me, so after quite some deliberation with my husband, I went ahead.

    I was walking only to the bathroom and back before starting. I had been averaging only around 600 steps a day for the previous 3 years. I was getting worse - I had declined to 500 or fewer daily steps in the months before treatment started, and was starting to consider household logistics as I was struggling. I was horizontal (or near to it) most of every day.

    I am now averaging around 3000 steps a day, with occasional higher days balanced with lower days. My quality of life is much, much improved, but I am still well below my previous functioning, and not really reliable from day to day.

    Regarding the ARV I took: There are risks. Some folk have side effects so bad they must stop only a few weeks in. Some get no benefit even after several months of costly treatment. I was lucky.

    I think this keto eating is helping me hold ground for now, but who knows what happens next.

    Tenofovir was good for me. Anecdote!

    Whether it would be good for you too, I don’t know. I’m happy to say I took it and it helped me, but I’m not going to say it will be good for everyone!

    Talk it over carefully.

    Regarding antivirals, no I hadn’t tried them first.
     
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  17. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Thank you @Keela Too

    I seem to be at the level you were when you started retrovirals. My step count is between 400-800 most days, very rarely more. About 3 years ago it was significantly more ( several thousand) and is slowly depleting. I too recline most of the day; even days when we are out I need to and do find a way. Breathlessness is also a real problem.

    I do have a heart valve problem but after exhaustive tests, the cardiac surgeon has concluded that the heart is not the reason for the decline in function.

    I have been unable to function at all after an upright car journey to Cornwall with an overnight stop 2 weeks ago, and have therefore booked a flight home next week, with wheelchair assistance. I have no certainty that this will be better but I will give it a go.

    So it's time to look more widely. I had a real sick response to antivirals so hoped I would be a responder but it doesn't seem so. I think my next step is to discuss with my doctor and maybe others, whether there is anything else to try. Retrovirals is one option, maybe heparin, saline if I could get it but I think I need to start another thread to discuss what options exist. I want to try and make the most of my late years, and just reclining doesn't appeal.

    Thanks for the feedback. I am very glad you have had such a positive response with retrovirals.
     
  18. Keela Too

    Keela Too Senior Member (Voting Rights)

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    Good luck if you decide to go that route. Xx
     
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  19. anniekim

    anniekim Senior Member (Voting Rights)

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    Jessica is featured in a UK newspaper this weekend. It’s true she is better than when at her very worse, but she is still significantly disabled overall. I suspect she had to rest loads to get back to her baseline after that presentation. From the article:

    “I am now bed-bound 23 hours out of 24, which sounds like a lot, but it’s a huge difference for me, and I’m managing to leave the house occasionally.”
    https://www.mirror.co.uk/news/real-life-stories/chronic-fatigue-syndrome-left-bedbound-13091318
     
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  20. brf

    brf Established Member (Voting Rights)

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    Dr. Karim Khan, the Scientific Director of the CIHR IMHA in Canada that houses ME, (CIHR is equivalent to NIH) is asking people for their experiences with antiretroviral use in CFS.

    This is a great opportunity to tell your story, make suggestions or provide any relevant or helpful information to make our case.

    Thanks so much.

     

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