Tenofovir some success

Discussion in 'Antivirals and Immune Health' started by Strike me lucky, Feb 8, 2016.

  1. Strike me lucky

    Strike me lucky Well-Known Member

    Id be skeptical that high cmv wasnt active. If you have high or low neutrophils or lymphocytes or white blood cell counts id say its quite possible cmv is active.

    Maybe worth trying antiviral for it???
    ariane lamo and Tareq like this.
  2. ariane lamo

    ariane lamo Member

    Ofcourse its a Retrovirus i can Asure you this 100% .
    I don't have scientific proof other than what we all know from the history of me cfs, Dr de Freitas , Mikovits, Rusccetti & quiet few others with a vast experiance in me/cfs from the early days of incline village they all believe thesame thing. i have this and many other facts, i don't need NIH or CDC to tell me this is a Retrovirus, it will be better cause they can make the arvs treatment aveilable for us easier and we can measure viral load etc.. but 100% sure its Retroviral infectious disease .
    why don't you try Insetress to?? its relatively safe and have proof to have a good action on mlv viruses but also agains herpes viruses???
    Farmgirl and garnet10 like this.
  3. garnet10

    garnet10 Active Member

    @Strike me lucky how are you doing on the anti-retroviral?
    ariane lamo likes this.
  4. Strike me lucky

    Strike me lucky Well-Known Member

    Holding my 8 or 9 out of 10. Testosterone replacement therapy has helped with exercise recovery and general wellbeing, it has definitely helped but hard to quantify but i cant say im a 10 out of 10 or if i ever will??
    garnet10 and ariane lamo like this.
  5. Zapped

    Zapped Well-Known Member

    I just ordered my first ARV combo pill (DIY for CFS/ME) after a lot of equivocation, then detailed research, all of which highlights cautions relative to protocols using ARV's... .

    If anyone else is thinking about going this route you might find this info helpful. Try a Google search for 'How ARV'S Work.' There's a ton of pertinent background info from credible sources. Multiple articles explain the arcane language in patient friendly style.

    Because of the explanation as to how the ARV's work, most authoritative sources recommended the use of two complementary types at once. Specifically, "The WHO recommends the use of two NRTIs with one NNRTI in ART-naïve patients who meet the criteria for treatment. Recommended first-line HAART regimens are: 1. Zidovudine plus lamivudine, plus either efavirenz or nevirapine; or,
    2. Tenofovir plus either lamivudine or emtricitabine, plus either efavirenz or nevirapine."
    (Fwiw, I went with #2. Delivery is 2 weeks away… .)
    Last edited: Aug 31, 2017
    garnet10 likes this.
  6. garnet10

    garnet10 Active Member

    Zapped, I hope you see some improvement. I have conversed briefly with 2 people who feel they have "recovered" or are "in remission" on ARV's. Both took tenofovir (Viread) at 245 or 300 mg once a day and raltegravir (Isentress) 400 mg twice a day. Both mentioned they do not take them daily but had to figure out how many days on and off. Others seem to be doing better on just tenofovir.

    I have tried practically everything ever researched/suggested for CFS over the past 15 years. Since I have been declining over the past 2 weeks after enjoying a couple of weeks of improvement, I'm starting to feel desperate enough to try ARV's.

    This week I struggled to get through my abridged day of work, and have been the subject of complaint from an unpleasant co-worker, such that my administrator has suggested I consider Family Medical Leave. I'm considering starting ARV's during this 12 week period, so that if I experience IRIS reaction I won't miss work, and perhaps would see improvement during that time. (although Hustler stated it took about 4 years before he saw improvement).

    I hope this goes well for you, and that you continue to update us. If I start ARV's I wiill keep this forum updated as well.
    Zapped likes this.
  7. Zapped

    Zapped Well-Known Member

    Thanks, and same for you. BTW, I did read Hustler's feedback, here which motivated
    me to move forward. I hope you check out some of the patient directed articles, re earlier
    post. They're especially helpful if you're doing it yourself, i.e. w/o a doc.
    (We'll both need regular lab tests to catch any problems quickly.). Good luck, huh:nailbiting:
    garnet10 likes this.
  8. garnet10

    garnet10 Active Member

    Zapped, how have you been doing on the ARV’s so far?
  9. Zapped

    Zapped Well-Known Member

    Thanks for asking. I hate to report it but I got worse in a hurry on Viriday and stopped
    taking them after 30 days of half dosage - Sick, not just trial discomfort.

    As posted elsewhere, someone pointed out that the second ingredient in that compound
    is particularly onerous and made many others worse as well. I may try ARV’s again but with Tenofovir plus some other ingredient... . Regrettably, I bought a 90 day supply=(

    Did you try them, and if so how did you fare?

    BTW, I did have high CMV numbers before starting. I don’t know now.
    Last edited: Nov 28, 2017
  10. garnet10

    garnet10 Active Member

  11. garnet10

    garnet10 Active Member

    I haven’t tried them yet. I’m waiting until I can no longer work anymore so I have nothing to lose, or get desperate enough to give it a try.

    Right now I can drag myself to an abridged work schedule and make it through the day.

    Sorry to hear what happened. When I finally do try them I will post here.
  12. xcell

    xcell Member

    Hello, how severe are you?
    Here you can read about slow increase starting with 1/8 tablet (!): http://meversuscfs.blogspot.com/2018/06/arztanfragen-mein-therapieregime-fur.html
    In this treatment regime Cistus Incanus instead of Raltegravir is used.
  13. Farmgirl

    Farmgirl Well-Known Member

    I am pretty bad. Almost died last year. Does one need a doctor's script for these meds?
  14. Zapped

    Zapped Well-Known Member

    Yes, prescription required. However, there’s always the online pharmacies (search here or Phoenixrising.com for ideas). IMO, antivirals and ARVs aren’t really relevant for CFS. In hindsight, I think ME/CFS is immune mediated, not viral. That’s controversial but for me it’s true (see above posts) and I’ve had this stuff ~30 years. These things can make you feel like hell. I felt worse on them than even during a crash - awful! Save yourself the grief unless your doctor insists you try them.
    Last edited: Dec 17, 2018
    Farmgirl likes this.
  15. Farmgirl

    Farmgirl Well-Known Member

    @Zapped. Thanks for the word of caution.

    I have also been sick that long, if not since I was 5 and I am now 57.

    You are not alone, Zapped!

    I, BTW, curse the day I decided to clean some brush out of our back property and ended up with a tiny tick on me that I did not notice for 4 days. That has been 13 years so I am in Lyme treatment as well as treatment for the HHV-6 managerie of stealth buggies running around untamed within my body.

    Thanks for the heads up and sorry you went through that extra tough time!!!

    Have you tried Mestinon? I heard from a doctor @ Brigham's Women in Boston that some ME patients are having success with that.

    Take care, best you can! FG
  16. Zapped

    Zapped Well-Known Member

    “Have you tried Mestinon? I heard from a doctor @ Brigham's Women in Boston that some ME patients are having success “

    Not familiar with it. What’s the application? Thanks.
  17. Farmgirl

    Farmgirl Well-Known Member

    Hi, it is a med they use for Myasthenia Gravis, which is also an immune system issue.

    Dr. David Systrom was interviewed on ME/CFS alert on YouTube from July, 2018 discusses the use of Mestinon, plus I have heard it other places.

    He said they are having some good results using it on ME patients.

    I would give you the link but I am technologically challenged.
  18. Vaporization

    Vaporization Active Member

    Here it is. :D

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  19. Farmgirl

    Farmgirl Well-Known Member

    You're a real gem.
    Zapped likes this.
  20. Vaporization

    Vaporization Active Member

    That is so sweet of you. :D I'm glad I could help. ;)
    Farmgirl likes this.