New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
Discuss the article on the Forums.

Tenofovir (Viread) / Raltegravir (Isentress) Cures ME/CFS Patient Sick for 20 Yrs + Tenofovir Poll

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Jesse2233, Oct 9, 2017.

?

Has tenofovir benefited you?

  1. Yes - I am in remission

    0 vote(s)
    0.0%
  2. Yes - Significant improvement

    1 vote(s)
    2.3%
  3. Yes - Moderate improvement

    1 vote(s)
    2.3%
  4. It has not done anything good or bad

    3 vote(s)
    7.0%
  5. No - Moderate worsening

    1 vote(s)
    2.3%
  6. No - Substantial worsening

    0 vote(s)
    0.0%
  7. I have not tried tonofovir

    37 vote(s)
    86.0%
  1. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,410
    Likes:
    3,376
    Caveats:
    • This is a patient's anecdotal report
    • We do not know their level of severity
    • We don't know their definition of cure or what other treatments they were trying
    • It took 4 years for the full result to manifest indicating a potential coincidence with spontaneous remission
    • ARVs have strong side effects and should be taken under a doctor's supervision
    That said here is their story with a link included.
    Note: Drs William Weir, John Chia, and Jamie Deckoff-Jones have all prescribed tenofovir to their ME patients with varying degrees of success. Dr Weir reports full remissions in some

    Also note: Response does not necessarily mean a retrovirus is the culprit as tenofovir has broad antiviral action and immmune modulating properties in non-infectious cases. XMRV has been debunked, so let's avoid reigniting that debate

    Edit: I have added a poll as others are reporting benefit from tenofovir in this thread
     
    Last edited: Oct 9, 2017
    justy, wastwater, MEMum and 11 others like this.
  2. fingers

    fingers Senior Member

    Messages:
    318
    Likes:
    161
    SW Endland
    Has it? Think I missed the unequivocal evidence...where is it?

    Do get the point about ART potentially having AV effects too though.
     
  3. fingers

    fingers Senior Member

    Messages:
    318
    Likes:
    161
    SW Endland
    In UK, those at risk of HIV get signposted by NHS to a site where they can obtain ARV's as a prophylactic. Generally, they are supported by having kidney function tests. There is a trial planned to see if this should be on prescription. Also, my own personal experience of Tenofovir + Emitricitabine does not suggest 'strong' side effects.
    Nowhere near as strong as ME-effects!
     
    justy, wastwater, MEMum and 3 others like this.
  4. Mrs Sowester

    Mrs Sowester BRING BACK KINA

    Messages:
    1,046
    Likes:
    7,454
    Yes, I tried tenofovir for 3 months last year, it didn't make a jot of difference apart from giving me nausea. I had to have monthly blood tests to check my kidney function because there is a risk of renal failure as a serious side effect.
    There was a suggestion that the shorter time people had had ME the greater the chance of recovery, but the numbers of people who had tried tenofovir under this doctor was so small (less than 10 if I recall correctly) that it wasn't possible to be certain.
    I think a clinical trial would be useful.
    There is absolutely no way anyone should risk trying Tenofovir without medical supervision; kidney failure is a serious risk with this drug.

    ETA I've just looked back at my emails - It was 4 months, not 3.
     
    Last edited: Oct 10, 2017
    justy, MEMum, merylg and 7 others like this.
  5. Jenny

    Jenny Senior Member

    Messages:
    1,349
    Likes:
    477
    London
    Am thinking of trying tenofovir. But my doctor says it has made nearly half of his patients worse. Have any on this forum been made significantly worse for a long time by tenofovir?
     
    justy, MEMum, ErdemX and 1 other person like this.
  6. fingers

    fingers Senior Member

    Messages:
    318
    Likes:
    161
    SW Endland
    Hi Jenny
    We are all different, respond differently and have different levels of (in)tolerance to things.
    Sure, we can go on the experience of others...for example most healthy people tolerate alcohol, and this has been tested for millennia. Some react badly to it...caffeine similar. These ARV's have been well tested for 30 years or so, less toxic now, fewer and less severe side effects. I 'believe' that the only way we will know is to each individually try them. I've been doing so for just over 3 months now. Honestly, some improvement I think but not massive - I need to come off at some point to test that, as we do forget how bad we were as we recover. I've been very active whilst on them, and I drink tons of water and have a healthy diet - I think these things are likely to be protective, although we ME sufferers do of course need to balance the activity and need to rest lots.

    Here's a top tip from a layman: establish your resting heart rate first thing in the morning, say 10 minutes after waking, but before getting out of bed (use a device such as a blood pressure monitor or a HRM). For a week or two, see how your RHR varies - it will vary depending on your recovery status from previous day, whether you have an active infection, psychological stress etc. It gets lower as we get aerobically fitter, i.e. our heart muscle gets stronger therefore stroke volume increases and heart needs to beat less often at rest to get the same blood volume around. Of course we don't get fitter unless we physically stress our system then allow it to adapt by resting.

    Then, if you feel well enough, and in consultation with doc, try ARVs as directed. Monitor your RHR. Mine has been consistently lower on ARVs - a good sign I think, and objective too. RHR is a very good indicator of cardiovascular disease risk (evidence-based :) ). If the ARV's are making you worse, my hunch (no research evidence, but discuss with doc) is that this could be reflected by an increased RHR.
     
    Wally, merylg, Philipp and 1 other person like this.
  7. Hip

    Hip Senior Member

    Messages:
    9,097
    Likes:
    13,877
    This report I believe is from PR forum user @Hustler, who I think previously went by the name of @Ellkaye on this forum (both accounts banned). You can use this Google search to find some of their old PR posts. @Hustler is also currently on the HR forum: the thread about his recovery on tenofovir and raltegravir is here.

    However, note that Hustler/Ellkaye started off with just mild ME/CFS (see this post), so this not a case of a severe bedbound patient going into full remission, but just a mild patient improving.

    Also, Hustler is not cured as such: he finds he still he need to take the drugs in order to remain in remission.



    That's interesting. Did these ME/CFS patients who got worse on tenofovir remain in a worse state for some time, even after discontinuing tenofovir?

    @Sandman00747 told me that a group of ME/CFS patients he met were taking tenofovir 245 mg and raltegravir 400 mg daily, and claimed many of them are in remission, and many are much improved. This group said most people take 4 to 6 months before the benefits kick, and they stressed that one needs to build up slowly to the specified doses.

    So those patients who got worse on tenofovir may have been taking too high a dose too quickly.



    In terms of who improves on tenofovir and who does not, conceivably there might be a difference between the enterovirus and the EBV subsets of ME/CFS.

    Tenofovir has an effect against human endogenous retroviruses (HERVs), and Dr Brigitte Huber showed that there is increased HERV-K18 activity in the post-mononucleosis subset of ME/CFS. So for this Epstein-Barr virus subset, tenofovir's anti-HERV effects could conceivably be the reason it works for these ME/CFS patients.

    But for enterovirus-associated ME/CFS, tenofovir could have anti-enteroviral effects via this drug's ability to potently inhibit IL-10, a cytokine linked to maintaining enteroviral persistence.

    It would be interesting to know which of these ME/CFS subsets tenofovir works best for, enterovirus or EBV.

    I am not ruling out the possibility of a retrovirus infection, given Prof Lipkin's initial findings of retroviral genetic signatures in 85% of ME/CFS patients.
     
    Last edited: Oct 10, 2017
    Binkie4, justy, MEMum and 9 others like this.
  8. Hip

    Hip Senior Member

    Messages:
    9,097
    Likes:
    13,877
    This study says that:
    The study states that this tenofovir-induced mitochondrial damage can in turn cause overproduction of reactive oxygen species, and the study concludes that:
    So the kidney damage caused by tenofovir may be due to depletion of antioxidants, resulting from damaged mitochondria which pump out more reactive oxygen species than the body's antioxidant system can handle.

    In terms of which antioxidants were depleted, the study found that in rats, tenofovir caused a 50% decrease in glutathione, 57% decrease in superoxide dismutase (SOD), and a 45% reduction in glutathione peroxidase.

    So possibly transdermal glutathione and/or N-acetyl-cysteine supplementation (to raise glutathione), tempol supplementation (to support mitochondrial SOD), and selenium (which promotes glutathione peroxidase) may help counter the negative effects of tenofovir, and reduce the risk of kidney damage.
     
    Wally, pattismith, merylg and 4 others like this.
  9. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,410
    Likes:
    3,376
    @Hip are we sure they're the same user? My impression was that Ellkaye was a woman and Hustler was a man, and their stories and posting styles were a bit bifferent if I recall correctly

    On the other hand, the Mikovits reference on the LymeNet thread may indicate that user is Hustler
     
  10. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,410
    Likes:
    3,376
    @Sandman00747 can you elaborate on any of this?
     
  11. Hip

    Hip Senior Member

    Messages:
    9,097
    Likes:
    13,877
    Not certain, but Hustler was banned because he had previously posted under another PR username which had been previously banned; I assumed that other username was likely to be Ellkaye, based not only on the fact they both talked about their recovery on the same antiretrovirals, but also on their style of expression (eg, very short sentences).
     
    Last edited: Oct 9, 2017
    ErdemX and Jesse2233 like this.
  12. fingers

    fingers Senior Member

    Messages:
    318
    Likes:
    161
    SW Endland
    Serious risk? Risk is usually assessed by guesstimating the likelihood of an event (kidney failure due to taking Tenofovir), and multiplying that by the impact if the event occurs (KF could be fatal). Even if we put impact at 100 out of 100, then if we know that 1 in 100 users of Tenofovir experience KF, then the risk is 0.01 X 100 = 1...out of a possible 100. I suspect that 1 out of 100 users getting KF is way too high. We also need to compare risks to get a handle on severity. Is taking Tenofovir more dangerous than travelling by car? Compare a year on Tenofovir with a year of car travel. Also, risk versus reward - reward of car journeys? Having some sort of life with ME. What's the risk of smoking? Smokers don't even think about it. Personal choice.

    3 months might be too short to get benefit - our anecdotal case here suggests 4 years to full or near full recovery.
     
    merylg and ErdemX like this.
  13. Mrs Sowester

    Mrs Sowester BRING BACK KINA

    Messages:
    1,046
    Likes:
    7,454
    @fingers This is not a drug people should be buying and taking without having monthly renal function testing.

    I'm not saying it isn't worth trying Tenofovir, I took that risk myself under medical supervision.
    The doctor I saw said he expected to see some difference within 3 months if there was to be any improvement, I had to keep a symptom diary, I saw absolutely no improvement in that time, I stopped.
    What you, or anyone else chose to do, is up to them.

    My onset was gradual, not after a virus. My mother has very mild ME and my daughter also has ME. Probably a different subset to people who recover on Tenofovir.
     
    Binkie4, justy, merylg and 2 others like this.
  14. Hip

    Hip Senior Member

    Messages:
    9,097
    Likes:
    13,877
    Usually you would look for studies that have determined the prevalence of the side effects in patients taking a given medication. This study found that out of 10,841 HIV patients taking tenofovir, over a 5.5 year period, 533 developed chronic kidney disease (CKD). So that's odds of 533 / 10,841 = about 1 in 20 patients getting CKD in that timeframe.

    The study says that this represents a 33% increased risk of CKD in people taking tenofovir.

    The prevalence of CKD in the general population is 1 in 10, although it is much less common in young adults, and much more common in those aged over 75, where the prevalence is 1 in 2. Ref: 1
     
    Last edited: Oct 9, 2017
    Wally, merylg and ErdemX like this.
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    8,828
    Likes:
    8,078
    australia (brisbane)
    Tenofovir is helping me alot. No side effects at all or die off type stuff etc. Liver and kidney function trsts have been fine.
     
    Binkie4, Wally, justy and 8 others like this.
  16. Keela Too

    Keela Too Sally Burch

    Messages:
    882
    Likes:
    3,926
    N.Ireland
    (Sorry with ongoing forum upheaval I have now deleted most of my post here. I will say however that Tenofovir helped me.)

    Earlier this year I wrote a blogpost about my improvements - It was in the context of NOT needing any form of graded exercise therapy in order to take up my new found energy levels:

    http://sallyjustme.blogspot.co.uk/2017/02/get-out.html

    I hope that helps a bit.
     
    Last edited: Oct 9, 2017
    Wally, justy, MEMum and 5 others like this.
  17. NelliePledge

    NelliePledge plodder

    Messages:
    681
    Likes:
    3,184
    thanks for sharing
     
    MEMum and Keela Too like this.
  18. fingers

    fingers Senior Member

    Messages:
    318
    Likes:
    161
    SW Endland
    Oh and yeah...supplement if you can afford it...or just eat well...it worked for millennia
     
  19. fingers

    fingers Senior Member

    Messages:
    318
    Likes:
    161
    SW Endland
    Good analysis, good dialogue :)
     
    Wally and merylg like this.
  20. fingers

    fingers Senior Member

    Messages:
    318
    Likes:
    161
    SW Endland
    Ahem, does that equate to fuck all risk then compared with possible benefits?
     

See more popular forum discussions.

Share This Page