This is topic Anyone being treated for XMRV? Please share! in forum Medical Questions at LymeNet Flash.


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Posted by viva (Member # 8183) on :
 
Just got test results last night; husband is positive for XMRV. Have not yet spoken with LLMD, but he has mentioned a drug named Raltegravir is being used with some success.

Would truly appreciate input about this med, or any other pharma or alternative treatments being used for XMRV.

Many thanks,
Viva
 
Posted by D Bergy (Member # 9984) on :
 
I have used an alternative method for treating XMRV using Rife type frequency treatments. The same method I use to treat my wife's Lyme Disease.

I do not think she had the virus, but who knows for certain? I do think I had the virus, as the frequency treatment produced a soreness in the intestinal tract. As I treated more for this, the soreness faded away, and it no longer happens. My son had a similar response. We both have autoimmune diseases, if that means anything.

When my wife, who has Lyme, was exposed to these frequencies a few times, she developed Shingles. Apparently going after the XMRV virus disturbed the Herpes Zoster virus also.

I then treated the Herpes Zoster virus and the Shingles disappeared in a few days.

From that experience, I cannot say for certain I had the virus, but this type of treatment does not typically give you any reaction to pathogens you do not have.

It is all experimental, but has not been harmful in any way.

I used frequencies based on the genetic makeup of the XMRV virus. You can read the link below for more information on these frequencies.

http://www.dnafrequencies.com/about.shtml

Dan
 
Posted by LymeMom Kellye (Member # 24807) on :
 
Daughter and husband haven't tested yet because we heard that it was $850 per test. Where did you get tested and what did it cost?

Good luck!
 
Posted by viva (Member # 8183) on :
 
Dan,

Thanks for the link, and for sharing your experience treating viruses with Rife. Rifing hasn't been an element of my husband's treatment, but I don't rule anything out.

It's interesting that the viruses seemed to cross-react (if that's the right word) with each other. I wish I could conceptualize what that means. Does it mean that treating one also treats another, or activates another? And I wonder what that implies for other types of anti-viral treatments.

LymeMom Kellye, my husband's LLMD recommended he be tested through VIP (Viral Immune Pathology) Diagnostics, vipdx.com. I will PM you with additional info; not sure if posting costs, etc. is okay or not??

Viva
 
Posted by CD57 (Member # 11749) on :
 
Also the Stanford CFS/Lyme study going on now may be taking more blood....they are testing for this as well as 30 other pathogens, including several spp of Lyme, bart, ehrlichia, babesia, mycoplasmas.
For free.

If interested do a search here on Stanford and see what comes up....this dates back to April or so.
 
Posted by Forgetfulgirl123 (Member # 27939) on :
 
CD 57, I took part in that study. When you say that they may be taking more blood...do you mean that they're calling the participants back in to take more, or they're looking for more new participants?

I'm kind of bummed because I was hoping that they were actually doing the research right now...I want them to hurry up and finish so I can have my blood work! lol!
 
Posted by jarjar (Member # 8847) on :
 
Here is a good site if you are not familiar with it for checking in with a lot of xmrv discussion.
Alot of material in forums and different areas.

http://www.forums.aboutmecfs.org/entry.php?595-What-s-Next-for-XMRV
 
Posted by m0joey (Member # 13494) on :
 
The stanford study is more for epidemiological purposes. It's unlikely any treatment trials will come of that.
 
Posted by Forgetfulgirl123 (Member # 27939) on :
 
I believe you are correct m0joey. I think that the stanford study was more to prove a link to chronic illness and chronic infection, rather than to actually investigate and try to find a treatment to combat the chronic illness and infections.

I'm sure the investigating for treatment will come later, once they've at least proven the connection and gained respect and awareness.
 
Posted by viva (Member # 8183) on :
 
jarjar,

Thanks for that link. It feels overwhelming to now try to get familiar with a whole new pathogen and its treatment (esp. since so little is known), but it must be done.

Viva
 
Posted by timaca (Member # 6911) on :
 
I'm fairly certain you have to live in CA to participate in the Stanford study.

Forgetfulgirl~ I don't think you need to go back to give more blood...they are taking ample amounts of blood the first time around.

Dr. Jose Montoya, the investigator in that study is speaking at ILADS on Saturday, presenting the Stanford perspective on viruses in chronic illness. He is one awesome doctor and is working very hard on our behalf trying to solve the problem of what is making us ill. He is an ID doctor, and a very bright and compassionate one.

I leave on Wednesday to fly to NJ for the ILADS meeting. I wouldn't miss his talk for the world.

Best, Timaca
 
Posted by dogmom2 (Member # 23822) on :
 
timaca, I participated in the study too, would love to hear what he has to say at the meeting. Can you give us some info when you get back?

thanks
 
Posted by timaca (Member # 6911) on :
 
Hi Dogmom2~
I will be happy to share what Dr. Montoya presents at ILADS. Others often share what they hear and see, but I can add my 2 cents as well.

Best, Timaca
 
Posted by muddyfeet (Member # 26633) on :
 
Just an fyi, I signed up for this study and they are only taking people in CA.

Currently they are focusing on Bay Area participants and after that they will be contacting participants in other parts of CA.

I'm still waiting to be contacted but called recently to check where they were at.
 


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