1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
August 8th - What is the one thing about suffering with severe ME that the world needs to know?
Andrew Gladman brings our coverage of the Understanding & Remembrance Day for Severe ME, airing the voice of patients ...
Discuss the article on the Forums.

Antiretroviral Trial

Discussion in 'XMRV Testing, Treatment and Transmission' started by Daffodil, May 29, 2010.

  1. gu3vara

    gu3vara Senior Member

    Messages:
    337
    Likes:
    44
    Sorry to hear about that Daffodil... I hope that the previous result wasn't a lab mistake... Was that ruled out?

    Have you considered trying gcmaf, I'm thinking of ordering it myself from gcmaf.eu but I still don't know if it will get in Canada in time or get stuck at customs.

    Certainly sounds less toxic than those ARV, vistide etc...
  2. Daffodil

    Daffodil Senior Member

    Messages:
    2,776
    Likes:
    758
    thanks gu3vara. i have thought about it, yes, but not seriously considered it yet. the idea of starting all over again is just too much right now.

    i was always on at least 2 drugs, either tenofovir and raltegravir or azt and raltegravir. everything points to the fact that its another retrovirus because after azt for a year, i really started to feel better, my fog was just starting to clear, and the nk cells jumped up. azt is the only wide spectrum ARV.
  3. illsince1977

    illsince1977 A shadow of my former self

    Messages:
    356
    Likes:
    21
    Don't lose hope, Daff. We're rooting for you! :D:hug:
  4. Charles555nc

    Charles555nc Senior Member

    Messages:
    431
    Likes:
    54
    I would really take a look at the vistide, Daff.

    I looked at the official fda website for vistide and fever, pneumonia, infections, and decreased blood elements (neutropenia) are all listed side effects of being on vistide.

    They dont call it "the hammer" for nothing.


    Edit:
    i tried gcmaf for 3 months and I felt really good for awhile and then had a bit of a crash afterwards and didnt go back on it.
  5. Charles555nc

    Charles555nc Senior Member

    Messages:
    431
    Likes:
    54
    Wow

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2362042/

    Statins are even working vs epstein barr infected b cells, (Ive already quoted studies showed that they are work to supress CMV, HIV, and West Nile Virus)

    So daffodil what can I do/say to get statins prescribed to me (im thinking simvastatin as it is showing the most ant infective abiltiy). there are literally tons of studies showing statins anti infective ability on a huge range of infections.
  6. Charles555nc

    Charles555nc Senior Member

    Messages:
    431
    Likes:
    54
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1195438/

    Statins effective against chlamydia pneumoniae infection in mice

    I was positive for hhv6, xmrv, epstein barr, and chlamydia pneumoniae and statins seem to be effective against all. I guess I should check cosackie virus a and statins.

    Heap: I dont know what to say, I dont like your idea of interferon inducers (tried them and noticed nothing) that you post everywhere I post, and you make this vague reference to "what is proven". So please tell me "what is proven" or "What is working", because I'd really like to know. I really dont know why you'd give advice without information or experience either regarding statins either.
  7. Charles555nc

    Charles555nc Senior Member

    Messages:
    431
    Likes:
    54
    http://www.endfatigue.com/health_ar...w_treatment_for_chronic_fatigue_syndrome.html

    Dr. Teitelbaum already treating his cfs patients with statins, pregnenolone, and coq10 mentitions some of the studies that I did!

    Interesting.

    Heap: You said in a questioning unsure way that you thought maybe statins did "something bad" to your mitochondria and then said not to try it and try the other proven stuff. Idk whats proven, and you didnt suggest anything else in your follow up post. Even the shine study is pretty bs-y as far as actual results.

    But just telling me not to try something without specific information just annoys me. Not your fault I guess, just having a bad day. Do you have some statin experience you'd like to share?

    I know there is an issue with some statins causing muscle inflamation, myopathy.
  8. Charles555nc

    Charles555nc Senior Member

    Messages:
    431
    Likes:
    54
  9. Daffodil

    Daffodil Senior Member

    Messages:
    2,776
    Likes:
    758
    do you guys think lipkin/hornig will actually find the infection? ughhh how long can this go on
  10. Charles555nc

    Charles555nc Senior Member

    Messages:
    431
    Likes:
    54
    Sorry the statin posts havent interested you Daffodil...

    I read somewhere around here that french scientists logged Xrmv mutants into Genebank, whatever that is...

    Pretty sure its a gamme retrovirus that is the mastermind, with hhv6 and others as the henchmen.

    Just gotta have more targeted drugs, more time, more research, more experiments. Waiting sux.
  11. Daffodil

    Daffodil Senior Member

    Messages:
    2,776
    Likes:
    758
    hi charles. im sorry i did not mean to ignore your statin posts. i did read about using statins...i think i am just too depressed to try something new....i dont know. i feel sort of paralyzed, without hope. maybe it will pass. i do appreciate your posts and frienship:)
    xoxo
  12. undcvr

    undcvr Senior Member

    Messages:
    761
    Likes:
    116
    NYC
    Speaking of statins and mito dysfunction I should really go back on CoQ10 and creatine. For awhile there just taking the thyroid supplement helped but it has deregulated itself. Sucks.

    Also the new Hep C drug is out. Adding that to conventional Hep C therapy there is an 83% cure rate from Hep C now. Not too many people know about this. My doc was suggesting this drug Incivek as a possible therapy option because it is a broad AV/ARV ?
  13. Tristen

    Tristen Senior Member

    Messages:
    613
    Likes:
    421
    Northern Ca. USA
    I was going to say that Dr T has been expressing optimism over use of statins. I see the link posted below. Many of us with chronic viral infections already have low HDL/LDL, and taking statins are therefore out of the question. I would be under a doctors care and have a lipid panel done before taking these drugs.

    Many of the people I know in the HCV community are aware of the new Protease Inhibitors that have raised the odds of Tx success dramatically. But this only applies to a specific class of responders. The response can be anywhere between 30 and 100% depending on multiple factors. And for that virus, it's all or nothing. Many are treating now, but many are waiting for better drugs. The good thing for those folks is the new drugs in pipeline now that will be Interferon free, and involve use of multiple DAA's (Direct Acting Anti-Virals). There is tremendous progress happening with those AV's and hopefully some of that research can spill over for us.
  14. undcvr

    undcvr Senior Member

    Messages:
    761
    Likes:
    116
    NYC
    Hey Tris do you know if the new HCV drugs are RNA or DNA analogues ? My doc brought them up as a suggested treatment option but he does not want to use it alone. Chances are these AVs will apply to us PWC too. I do not know of any other drugs in the pipeline unless you are talking about Chimerix. What others do you know about that maybe approved soon ?
  15. Tristen

    Tristen Senior Member

    Messages:
    613
    Likes:
    421
    Northern Ca. USA
    I'll leave you this for now, and see if friends have some other links I could share. http://www.hcvdrugs.com/
  16. Tristen

    Tristen Senior Member

    Messages:
    613
    Likes:
    421
    Northern Ca. USA
    http://www.hcvadvocate.org/hepatitis/hepC/HCVDrugs.html#IFfree

    This may be more of what your looking for. Plus, if you scroll to the bottom, they have a category for the IFN free treatments in pipeline.

    Word is the Abbott and BMS trials are showing best results so far. They get really into dissecting the science in that arena, just like we do here.

    Hope that's helpful
  17. undcvr

    undcvr Senior Member

    Messages:
    761
    Likes:
    116
    NYC
    One of the interferon free trials is using a monoclonal antibody similiar to Rituximaub.
  18. Tristen

    Tristen Senior Member

    Messages:
    613
    Likes:
    421
    Northern Ca. USA
    Which one are you looking at for that?

    Here is one more along those lines of using Rituximab: http://www.hindawi.com/journals/ah/2011/835314/

    "Based on the notion that peripheral B cells serve as reservoirs for persistent HCV infection and from a therapeutic perspective, it may be beneficial to eliminate peripheral B cells in patients with CHC (Chronic HCV) by the administration of anti-B-cell antibodies, such as rituximab, along with combination therapy with peginterferon and ribavirin to eliminate circulating HCV in the blood, leading to a synergistic effect on HCV clearance in patients with CHC".

    I'm curious if the B cell reservoir issue, is a matter of disease progression. Most of the people I know with HCV who are sick, have immune problems. But that's a minority. The rest who just have liver problems, are not as sick.
  19. undcvr

    undcvr Senior Member

    Messages:
    761
    Likes:
    116
    NYC
    Funny you should mention that, I was thinking of that as well. Or that they are coinfected with something else.
  20. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,837
    Likes:
    4,749
    Sth Australia
    I know your post was to heapsreal but my CFS specialist has told me to stay away from statins as if someone ends up having heart attack on them, studies have indicated that person is more likely then to die.

    They dont just lower bad cholestrol but also lower our good protective cholestrol too.

See more popular forum discussions.

Share This Page