My XMRV Results

[mojoey]

hey ross and jim

I'm seeing peterson on Tuesday. Man I really wish I had one relatively dominant bug to go after...Ross those results are just amazing to look at.

 

[Advocate]

Reply to Post #21 on My XMRV Results thread

I did go to Joey's website, and was amazed to find a link to a page on the National CFIDS Foundation website (maybe it's not their website?) that was written by Al Cochetto about Diane DeFreitas's discoveries. I believe Joey thinks that what Al has written is very important.

http://www.ncf-net.org/forum/revelations.html

Al Cochetto has always had an interest in patents, and he describes this in a depth that I can't understand without studying it.

Just one quote: "And I believe that, much like the work revealed by Grossberg's patent (also funded by the NIH),
the NIH certainly has more than a singular idea about what is happening to us as patients, all the while denying the existence of retroviral involvement and not providing details to outside scientists for additional examination and perhaps subsequent replication! Any retrovirus that can invade the mitochondria directly indicates trouble!"

 

[Cloud]

Joey.....Those labs together with an improvement in symptoms pretty much prove that my perturbed immune system was at least perpetuated by a chronic viral infection. My endocrine labs also showed marked improvement back into normal ranges.

I am apprehensive as to what possible positive XMRV results will mean for me? The worst case scenario would be that I have to go off the Vistide because the XMRV is just gonna cause a relapse of Viruses anyhow. The best case scenario....Vistide kills/suppresses XMRV (doubt this), or that the Vistide has already killed off all the viruses leaving none for the XMRV to re-activate. I will find out when I return in a few weeks.

I'm sure your visit with Dr Peterson will be most interesting what with all the new developments. We are getting back into winter weather too....be careful up there in Tahoe. I did that drive every 2 weeks last winter through several snow storms. It can get a little challenging. But, like I told Dr Peterson....I would hitchhike up there naked if that's what it takes.

 

[Jim]

Artemisinin

janis,

do u know if Artemisinin is the same thing as artinisin? i think it's related to Artesunate, which is i think what cheney uses. i may give that and/or wormwood a shot.

as for dr m, i believe she is hesitant to mention any drugs yet. will ask next time i contact her.

jim

 

[hvs]

I am apprehensive as to what possible positive XMRV results will mean for me? The worst case scenario would be that I have to go off the Vistide because the XMRV is just gonna cause a relapse of Viruses anyhow. The best case scenario....Vistide kills/suppresses XMRV (doubt this), or that the Vistide has already killed off all the viruses leaving none for the XMRV to re-activate. I will find out when I return in a few weeks.

Interesting question, Ross. And the fact that Dr. P has, in a manner of speaking, had good success at putting CFS into remission by going after those herpes-family viruses is interesting. What does it mean? Does it mean that he's simply given the body a chance to do its healing work against xmrv (and the herpes viruses were the main problems because they're so ubiquitous)? Does it mean that XMRV is especially "successful" when it partners specifically with these viruses? Does it mean that he has actually had little success against XMRV in particular but he improves folks' health by eliminating herpes-family infections?

I get the feeling that we will get specific answers about this in the coming couple of years... Fascinating.

 

[MEKoan]

Thanks Jim,

When a test is available, I am wondering if it is best to be tested during a crash or when feeling not too bad.

It's so terribly difficult to arrange to do something like this when very ill but I do want as much information from the test as possible.

I realize you have no way of knowing the answer to this question.

I will have to be a patient patient. I'm sure we will all find out more as time goes by.

Thanks for your patience and interest.
Koan

 

[Aftermath]

Other Viruses?

Jim,

Thanks so much for sharing. If I get some time this weekend, I'm going to try to put your results into a .pdf table with nice neat columns to make it a bit easier to read--again, this is incredible info and I want to make it really stand out.

Out of curiosity, were you ever tested for HHV-6 and/or EBV?

The reason I say this is that my case is classic sudden-onset--it started suddenly with a bad cold type illness. Moreover, I have a positive brain SPECT scan and tilt table test.

That being said, I am totally negative for any viral indicators. No HHV-6 and EBV in blood testing (antibodies @ Focus) and even spinal fluid (PCR testing done at Viracor).

As happy as I am for this discovery, a part of me is pretty frightened that I am still going to be without answers after being tested for XMRV.

I am just curious as to if you are positive for any other viruses...

 

[Cloud]

Koan...My guess is that the some of the Cytokines are the only values that would have an acute fluctuation in a crash...I believe the RnaseL, Elastace, TNF, IFN, etc, take more time to fluctuate and/or are not affected by acute changes all that much. Not sure...this stuff is over my head....maybe someone else here knows? Something to consider for disability purposes as well.

hvs....As far as my current improvement on the Vistide, I believe he attributes that primarily to "clearing" the CMV. I tested negative for HHV6&7 before treatment. But it seems obvious that the Vistide is hitting other undiagnosed virus' because I continue to improve on the drug even though I cleared the CMV 5 months ago. The xmrv definitely throws a curve....but whether it's good or bad, is yet to be determined. I suspect, that a negative xmrv will lend to my best prognosis. Even though xmrv will likely be treatable soon, I am doing so well with the Vistide.

 

[Jim]

"aftermath,"

cool on making a table. i kind of had a better format but it lost its format on here.

i was tested for hhv6 and barely had antibodies. i have antibodies to ebv (i had mono), but neither seems active, so i would say they are negative. cmv was negative too. and lyme.

i was positive for chlamydia pneumoniea and micplasma pneumoniea, but otherwise no signs of anything active, until xmrv.

also all my t-helper cell tests were normal (CD3,CD4,CD8,CD19)

joan, i would get tested during a crash, if possible, as the inflammatory response would spike. i'm only moderately certain that the virual load itself increases as well, as its replication rate would spike.

anyway, i probably wouldn't make plans to crash tho. that's never a good idea. besides, i know it can be tough to get out to be tested when crashing, ironically. amd if u have xmrv, i believe it will show up no matter what. in fact, i was told being on equilibrant and valtrex would not affect my results.

cheers.

 

[jackie]

Hi Jim.....I don't know if my information will help, but I'm taking Acyclovir.

I've mentioned in several posts that I've taken very high doses for over 3.5 yrs.

I'm being treated by Dr. Chia and he actually prefers Valtrex and Equilibrant for a lot of his patients (he's had success with this protocol).

You mentioned that you THOUGHT it might be helping you and that struck a chord with me!

It can be extremely difficult on these anti-virals to tell how much improvement you're really experiencing.

After three years (and that's been consecutive - NEVER a break) I'm noticing a significant improvement in my "brain" problems.

I can read books again - where I was unable to for quite a few years. I can write (as in "post") although not without great effort and always suffer from PEM if I try just a bit too hard.

But the PEM doesn't last as long as before. And now, if I scrutinize how I'm feeling on a day to day basis, I think I'm improving somewhat in most areas that have been affected.

Not dramatically, but in a more subtle way that's sometimes hard for me to describe. I think you said that you weren't having fevers anymore....same here!

I won't go into all the changes I'm started to see, but just wanted to tell you to continue, if you can, to hang in there!

I don't know how long you've been taking Valtrex/Equilibrant. The only "improvement" for the first 1.5 - 2 yrs. (for me) was the supression of my Shingles.

Ironic, since I only developed shingles (coincidentally) after I began the anti-viral treatment.

The reason I'm not on Valtrex is my HMO health plan. Acyclovir is ok'd and paid for - Valtrex is not.

Dr. Chia is an extremely kind, compassionate and considerate man and he knew this and never gave me the option of one drug over the other.

Of course there is a difference between the two, but this "therapy" was a gamble anyway, and I gladly took it.

Dr. Chia strongly believes in adding an immune modulator such as Equilibrant (previously used Oxymatrine or Marine from China), but as I have a very high degree of pain and use opioids whenever I need them, it appears that precludes me from taking those, as well as LDN.

It's my understanding that at the very least this protocol is a long-term proposition, with possible relapses when it's stopped.

I was originally started on anti-virals by my Neurologist, and told to prepare to be on at least a maintenance dose for life. XMRV may change that.

Also, because of my HMO, I've been denied quite a few of the lab/blood tests I see others having done. So I can't tell you what my "numbers" are.

But in the tests I have been given, nothing shows up positive! And yet, my Dr. has dx'd me with Chronic Enteroviruses (multiple) based on my history/symptoms - there is NO doubt in his mind.

My EBV titres were in the high 600 range (you know, flagged by the lab) - but I was told that wasn't very high compared to many others with ME/CFS - and not important.

I haven't been tested for the Retrovirus yet. I just wonder?!

Who knows, maybe we have both been on the "right track", so far. I'm content with that for now, because I'm finally seeing a difference.

But I'm also ready to switch gears if it turns out I can actually receive a treatment meant for what I HAVE!

regards.........jackie

 

[Jim]

jackie,

thanks for the reply. yes, i think i may be a bit better, tho it's hard to use the word better when i am so limited.

anyway, i started valtrex about 9 months ago, equilibrant a few weeks ago. i think my crashes may not be as bad or long as before. i thought it may either be valtrex or ribose. whenever i strain or overdo, i take lots of ribose, in my mind, to quickly replace the energy i just used.

still, i am most eager to find something better as a result of the xmrv finding, whether an antiviral, protease inhibitor, etc. i know dr m is talking to drug companies and hopefully trials will be coming soon.

glad things are better for u ! in all my years, it's been hard to find anything that changed my health trajectory from down to up.

 

[Kati]

I'm sure your visit with Dr Peterson will be most interesting what with all the new developments. We are getting back into winter weather too....be careful up there in Tahoe. I did that drive every 2 weeks last winter through several snow storms. It can get a little challenging. But, like I told Dr Peterson....I would hitchhike up there naked if that's what it takes.

You guys are sure lucky to have access to a world class competent doctor- Ross, your lab results are phenomenal- I am so glad that you are doing better and that you can enjoy life again.

I took a look at lab fees at the reno lab. It would be over 1000$ to have a complete picture of what's going on. That would very likely not be reimboursed by our provincial plan. And then, my dr would not have a clue about what to do with the results...

 

[Cloud]

Absolutely agree Kati......I feel very fortunate to be in with Dr Peterson. After compiling and sending off all my records, it was about 2 years before I got in. He is in high demand. That is going to change dramatically now with the new clinic and things changing as far as now having a "legitimate" disease*. Those labs have been mostly for diagnostic purposes. Until recently, there was little could be done for treatment anyhow....For me they monitored treatment effectiveness as well.

*I never understood the argument that CFS wasn't a disease because the cause was unknown. I'm sure you can name many "real" diseases without a known cause! Strange days indeed

 

[hvs]

Absolutely agree Kati......I feel very fortunate to be in with Dr Peterson. After compiling and sending off all my records, it was about 2 years before I got in. He is in high demand. That is going to change dramatically now with the new clinic and things changing as far as now having a "legitimate" disease*.

I, like Ross, don't take it for granted. I'm very fortunate.

I'm sorry it doesn't sound like you'll be able to see him, Kati.

But at least, as Ross says, this discovery should transform I.D. docs (HIV docs?) into XAND docs. The XMRV test will appear in the weeks or months to come and some sensible treatments should follow.

 

[JanisB]

I can't remember who in this thread didn't show viral titers (it's those memory sinkholes everywhere)...

But I wanted to share my experience having had ME/CFS for 22 1/2 years. I've been tested numerous times for CMV, EBV, HHVs, etc. every time I go to a new doctor and every time I've gotten different results. This leads me to think I'm just picking up this stuff (opportunistic infections) when I'm weak and getting rid of them when I have some temporary improvement. On the other hand, the lab tests could not be all that accurate.

To the person who asked about Artemisin, go to this link: http://en.wikipedia.org/wiki/Artemisinin where it explains this is the active ingredient while Artesunate is a synthetic. My friend was told by her Lyme doctor that it is effective against Lyme. I don't know why it would work against viruses in ME/CFS. From reading this paragraph about its presumed anti-cancer actions, I think it would make people worse.

Artemisinin is under early research and testing for treatment of cancer, primarily by researchers at the University of Washington. Artemisinin has a peroxide lactone group in its structure. It is thought that when the peroxide comes into contact with high iron concentrations (common in cancerous cells), the molecule becomes unstable and releases reactive oxygen species. It has been shown to reduce angiogenesis and the expression of vascular endothelial growth factor in some tissue cultures.

But then a prestigious CFS MD suggested it.

 

[starryeyes]

First XMRV Test

Hi Jim,

You are the first PWC I have seen now in person who has been tested for XMRV and I find it very exciting. It is amazing as others here have pointed out, that you test for both present XMRV and Antibodies to it. I also find your history and test results regarding EBV, CMV and HHV6 very interesting.

I am so similar to you. I'm mostly bedridden but not as wheelchair bound. I got EBV in 1985. I'm very sorry you've been so severely affected by CFS.

Thank you so much for posting your test results here. I want to say, Congratulations but I know that's not right. LOL. Oh boy. At least now you know much more about what you are dealing with. I pray that you can find something that helps you feel better.

tee

 

[cfs since 1998]

To the person who asked about Artemisin, go to this link: http://en.wikipedia.org/wiki/Artemisinin where it explains this is the active ingredient while Artesunate is a synthetic. My friend was told by her Lyme doctor that it is effective against Lyme. I don't know why it would work against viruses in ME/CFS. From reading this paragraph about its presumed anti-cancer actions, I think it would make people worse. But then a prestigious CFS MD suggested it.

There is a published report that artesunate was successfully used in a young boy with a severe infection of CMV that had become resistant to standard antiherpesvirals. There is also a paper that says artesunate has been tested in vitro and found to have been effective at inhibiting those viruses but artemisin was ineffective.

 

[Jim]

thanks tee

tee,

thanks for the well wishes.

yeah, not sure if this is good news or not. with a family histiry of prostate cancer, with my faulty immune system, and now with xmrv, it's a bit worrisome.

but, this should open up treatment possibilities, and hopefully one kicks in.

jim

 

[Cloud]

hi jim. i was just browsing through some old threads (i'm new to the board) and found yours. i have had CFS (after mono) for almost 18 yrs and am housebound.

i think it is great that you tested positive for xmrv. i think that knowing what to target will be a wonderful change!

i am amazed that ampligen did not help you! may i ask......where did you get ampligen and for how long?

who did your xmrv antibody testing? that one is not commerically available yet.

i sent my blood away about 6 days ago...looks like its going to be the longest 3 weeks of my life! lol i am praying for a positive result.

i asked a virologist why i tend to feel a little bit better on valcyte+valtrex. i asked if they might have some small effect on XMRV. he said that they do, just as in HIV.

i am so unbearable ill that i am jumping on AZT as soon as a positive xmrv result comes in (if my doc agrees to give it to me)

please keep us posted on your progress...

love
sue

I didn't think the anti-virals would have any affect at all on a retro-virus like xmrv. If it does, it would certainly influence my decision about staying on the Vistide until we have anti retrovirals available. Anyone have info/links on this?

 

[Cloud]

Thanks Mandy....you have opened some new ideas for me.