1. Patients launch a $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!
First Direct Evidence of Neuroinflammation - 'Encephalitis' - in ME/CFS
A small study with just nine patients has captured the attention of patients and researchers alike after reporting direct evidence of inflammation in the brain of ME/CFS patients. The finding was one of the highlights picked out by Professor Anthony Komaroff in his IACFS/ME...
Discuss the article on the Forums.

treatments/suggestions given to positives

Discussion in 'XMRV Testing, Treatment and Transmission' started by Jim, Oct 18, 2009.

  1. Jim

    Jim Senior Member

    Messages:
    75
    Likes:
    0
    does anyone know why NSAIDs (which have been suggested to me) would be advisable if one has high inflammatory cytokines? i would think those cytokines are high in order to fight off an infection, like XMRV. so wouldn't lowering them make things worse?

    or could they be unnecessarily high, and thus it is advisable to directly try to lower them?

    maybe this is kind of comparable to why take aspirin to fight a fever, if the fever is part of the body's defense. never understood that one (except of the fever gets too high).

    thanks,

    jim
  2. fairlight

    fairlight

    Messages:
    77
    Likes:
    0
    The one NSAID that really helps

    me is indomethacin (Indocin). It's a heavy hitter, but it's the only one that helps me.
  3. Jim

    Jim Senior Member

    Messages:
    75
    Likes:
    0
    in what way does it help? overall health, or specifically inflammatory pain? i don't have much pain anymore, but my inflammatory cytokines are high, so perhaps this NSAID could help.
  4. fairlight

    fairlight

    Messages:
    77
    Likes:
    0
    Hi Jim-

    it seems to help overall inflammation in my body. I have a lot of eye problems (uveitis, etc.) and sometimes they don't see inflammation in my eyes but I'm still having eye problems. I think that inflamation in my body affects what's going on in my eyes.

    I just overall feel better when I take it. It can make you feel a little bit dizzy so driving is not recommended when you first take it. I usually take it at night. It helps me sleep and I feel better when I wake up.

    Hope this helps
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    6,964
    Likes:
    4,097
    australia (brisbane)
    xmrv trearment????

    hva seen naids , AZT and in combo with other drugss.What on the horizon???????????????????????????????????????????????????????????????
  6. winsomme

    winsomme

    Messages:
    14
    Likes:
    0
    interferon beta - xmrv

    I am wondering about interferon beta as a treatment for XMRV. I have read a few things that make me think it could be a possible treatment.

    It seems that XMRV is susceptible to the antiviral action of interferon. Also, in reasearch on interferon beta to treat MS they have found that the treatment lowers Nuclear Factor Kappa Beta (NF-KB) and raises STAT1. and NF-KB is supposed to activate XMRV and STAT1 has been found to be low in CFS and is a key component of immune system.

    Finally, I thought I remember that based on the gene expression studies done by Dr Kerr in the UK they were actually going to do a trial of interferon beta on PWCs.

    Is there any way to contact one of the DRs who knows about XMRV and see if this is a med that might be tried?

    honestly, I'd be more interested in trying this before an anti-retroviral.
  7. Jenny

    Jenny Senior Member

    Messages:
    1,223
    Likes:
    172
    London
    I seem to remember that interferon was one of the treatments tried in the UK in the 1980s. Results were disappointing. But I believe there are new types of interferon now.

    Jenny
  8. winsomme

    winsomme

    Messages:
    14
    Likes:
    0
    thank, cold. I did happen to see that, but thanks for mentioning it.

    I'm actually wondering about Interferon beta specifically in relation to the discovery of XMRV in PWCs.

    It seems like the beta form of interferon does several things that could help work against XMRV including downregulating Nuclear Factor Kappa Beta which I believe was one of the things Dr Mikovits mentioned as a trigger for XMRV replication.

    here is a link to the immunological changes found in people treated with interferon beta:

    http://www.ncbi.nlm.nih.gov/pubmed/19559654
  9. leaves

    leaves Senior Member

    Messages:
    1,193
    Likes:
    14
    treatments/ suggestions given to positives

    If you all don't mind, could you positives tell me how your dr's are dealing with this? Any supplements or medicines or other things that come recommended? Any help is welcome, thanks

    If you don't feel comfortable posting this on the forum, please pm me.
  10. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    185
    Clay, Alabama
    I have not been tested. But my doctor is assuming I am positive. She prescribed supplements that hinder viruses. It is from Crane Herb. I am sorry, I don't remember the name of it. But it has Chinese herbs in it, but they are grown in US.

    Also, we are taking things that hopefully will help natural killer cells, such as Proboost Protein A and immune system herbs and melatonin and anti-oxidants and CoQ10 to hopefully prevent cancer in the future.

    Tina
  11. Katie

    Katie Guest

    I heard from Cort that Dr John Chia is using oxymatrine aka sophora flavescens aka ku shen aka kushenin. lol, a lot of aka's.

    If I test positive I'm planning (kinda, not thinking too much right now) on going the eastern route as my husband has been seeing a very experienced and knowledgable osteopath trained in eastern medicine and techniques for years, lol, decades actually. I'd be interested in any other chinese roots anyone else could suggest so that my husband's osteopath could check them out.
  12. Kati

    Kati Patient in training

    Messages:
    1,821
    Likes:
    882
    Mandy, I suspect that they all have their personal opinions about AZT, according to their own specialty and knowledge about antiretrovirals. Dr Klimas is the best positioned to answer with her clinical experience. In vitro research is happening right now to find out which drug would work best, but the toxicities it could imply on us humans could be devastating. Dr Mikovits brings her experience as a researcher, learning more every day about the beast.

    To know what the best treatment is for XMRV, there will need to be some serious research and clinical trials with drug companies that will work on a drug or a combination of drugs that will work best for XMRV. Then probably we will have to take care of the co-infections as well. It is terribly complicated, and making it more difficult is the lack of support from the CDC, and lack of funding to support the researchers.

    One more point to be aware, is taking a drug that is not optimal for the retro-virus could possibly force it to mutate or cause further damage to our immune system, so I would not rush and buy a drug that is not prescribed by a doctor or not under close follow-up by a doctor- usually liver/cardiac/ or kidney toxicities can possibly be non reversible if you take the wrong dose of the medication. Also sometimes, it weakens your immune system in the same way than chemotherapy does, putting you at risk of life threatening infections.

    Regards, Kati
  13. Ronan

    Ronan Senior Member

    Messages:
    120
    Likes:
    0
    Is XAND treatable?

    I have just been watching the Mikovits Seminar from last weekend. One thing she mentioned that when comparing XMRV to HIV, the initial XMRV infection is like HIV (i.e. people who have the XMRV virus but are not yet sick), but when someone gets sick from it (XAND) its similar to when someone with HIV gets AIDS.

    If that is the case, with me being unwell for 8 years, im a bit worried that their wont really be any treatments available for people who have been unwell for a long time. From what i understand HIV is currently treatable but when you develop full blown AIDS the treatments available are not that significant. Am i wrong in my assumptions, am i missing something?

    Thanks
  14. mojoey

    mojoey Senior Member

    Messages:
    1,097
    Likes:
    59
    To clarify again, Peterson did not offer me AZT. He said that if there were a clinical trial being done on AZT, he would sign up.
  15. Yes.
    There is not yet any proof that XMRV actually causes M.E. or XAND as it will hopefully soon be known.

    However, from what Judy Mikovits said in her seminar, it will be easier to create treatments and vaccines for XMRV if it does indeed cause M.E. because it doesn't mutate as often as HIV. It's a pretty stable virus and thus easier to nobble. To use a technical term.

    HTH
    Rachel xx
  16. kurt

    kurt Senior Member

    Messages:
    1,132
    Likes:
    175
    USA.Earth
    Full blown AIDS is still treatable in some cases, just more complicated. They have to find and treat all the co-infections as well as use ART to stop the retrovirus.

    There is still a LOT of missing information about XMRV and CFS. Note that Mikovitz said in her presentation XMRV is still a hypothesis for CFS. I have known people sick with CFS for decades who eventually recovered, once they found their 'co-infections' and correctly treated them.
  17. CJB

    CJB Senior Member

    Messages:
    743
    Likes:
    387
    Oregon
    Dr Judy said that when HIV was controlled, the opportunistic infections resolved. I'm hoping that's what we'll be looking at with XMRV.
  18. CJB

    CJB Senior Member

    Messages:
    743
    Likes:
    387
    Oregon
    Dr Judy indicated that she's personallly working with three big pharma companies. They have drugs on the shelf that have already been deemed safe for clinical trials and they are testing them against XMRV. That's happening right now. Clinical trials should be coming up soon.
  19. leaves

    leaves Senior Member

    Messages:
    1,193
    Likes:
    14
    Yeah I would be up for going into a clinical trial, as long as it isnt AZT really
    But i'm sure ill get the placebo ....

See more popular forum discussions.

Share This Page