treatments/suggestions given to positives

[Jim]

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

 

[fairlight]

The one NSAID that really helps

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

 

[Jim]

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

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.

 

[fairlight]

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

 

[heapsreal]

xmrv trearment????

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

 

[winsomme]

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.

 

[Jenny]

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

 

[cold_taste_of_tears]

Cort has kindly made a page on this question I believe.

Treating Chronic Fatigue Syndrome (ME/CFS): Interferon

 

[winsomme]

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

 

[leaves]

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.

 

[usedtobeperkytina]

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

 

[Katie]

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.

 

[Kati]

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

 

[Ronan]

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

 

[mojoey]

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.

 

[thefreeprisoner]

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

 

[kurt]

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

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.

 

[CJB]

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.

 

[CJB]

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.

 

[leaves]

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 ....