My XMRV Results

Jim

Senior Member
Messages
79
Likes
14
I thought I would share my latest test results:

XMRV Antibodies - positive

Active XMRV - positive

IL6: >6000 pg/ml (normal is <15)

IL8 >10,000 pg/ml (normal 30),

MCP-1 14,000 (normal 30)

MIP1alpha 8000 pg (normal 80)

MIP 1 beta 18,000 pg/ml (normal <80 pg/ml)

TNF - normal

VEGF - normal

IL 1B - normal


From past tests:

NK Cell Activity - low

RNase L Activity - high

LMW RNase L - present

Elastase - high

If anyone has any ideas on treatment or test interpretations, feel free to reply. So far, as for treatment ideas, I have been told non-steroidal anti-inflammatories, curcumin, vitamin d, and possibly Celebrex. Oh, and not AZT.

Cheers,

Jim
 

Summer

Senior Member
Messages
175
Likes
0
Thanks for sharing Jim. If you can tell us who tested you and who gave you the treatment recommendations, it would be appreciated.

I find that curcumin helps me a lot, and I suspect it's the anti-inflammation properties.
 

garcia

Aristocrat Extraordinaire
Messages
975
Likes
247
Location
UK
Since your NK cell activity is low, you sound like you might be a good candidate for imunovir. Obviously that doesn't preclude you from taking things like vitamin D too.

p.s. how/where did you get tested??
 

Jim

Senior Member
Messages
79
Likes
14
i got the results from the w.p.i. a while back. dr mikovits gave me the suggestions on treatments for now, before they can figure out a better drug for xmrv.

i was on imunovir a decade ago and thought it helped. tried it again but it didnn't seem to help anymore.

right now i'm on valtrex and equilibrant. could be helping, but not sure.
 

dsdmom

Senior Member
Messages
396
Likes
49
Jim,
Thank you for sharing.

Couple of questions -
Did she recommend dosing on the vitamin d and curcumin?
And what exactly is EZT?
 

dsdmom

Senior Member
Messages
396
Likes
49
Did she explain the reason behind the vit d? And I'm guessing that' daily....

I can see the anti-inflammatory effects in the other treatments you mentioned but just wasn't sure about the vit. d
 

Jim

Senior Member
Messages
79
Likes
14
i think the vitamin d is for the immune system. many pwc's who can't get out in the sun much are often low in vitamin d as well. and yes, it's daily.
 

Cort

Phoenix Rising Founder
Messages
7,361
Likes
2,057
Location
Arizona in winter & W. North America otherwise
Wow - you've really got those inflammatory cytokines going! What is MIP and MCP? How about other viruses? You seem to fit the WPI Neuroimmune (Incline Village Cohort) perfectly. Any other pathogens present?

Interestingly of the doctors I've seen no one's ever tested me for any of that.
 

Jim

Senior Member
Messages
79
Likes
14
yeah, those results are stunningly off. not sure if that's good or bad. ;)

mcp and mip are chemokines (small cytokines). they are usually part of an immune response, which i believe indicates my body is trying to fight something (e.g. an infection). i believe these molecules are involved in fighting off h.i.v. (which i don't have).

pwc = people with cfs.
 

MEKoan

Senior Member
Messages
2,629
Likes
117
Hi Jim,

May I ask how long you've been ill? If you have been ill a short time - less than 5 years - were the tests done during a relapse?

I guess what I'm asking is how were you feeling when you were tested? I'm wondering if active virus is found late in the illness and/or during remissions.

I hope you (we) are able to access good and effective treatment soon!

Thanks,
Koan
 

Jim

Senior Member
Messages
79
Likes
14
koan,

i was a sudden onset (mono) 25 years ago. i can't recall if i was in a major crash when the blood was taken, but i am quite dysfunctional. i have to use a wheelchair and am essentially housebound. i do not get low grade fevers anymore tho.

i know there was a theory that RNase L abnormalities die off over time, but mine were quite abnormal just a few years ago.

yeah, hopefully targeted treatments will follow. i guess the good thing about being so abnormal ;) is there is something to target.

cheers.
 

lostinthedesert

Killer, Clown, Priestess
Messages
115
Likes
1
Hopefully targeted treatments will be available soon. For now I would take a look at low dose naltrexone as an immune booster if it is compatible with your regimen and you can tolerate it. AFAIK it is not compatible with immune suppressant treatments such as steroids since they work to opposite ends. It is also not compatible with narcotic drugs since it blocks certain opioid receptors.

I will likely be trying this treatment soon. I have no knowledge that I am XMRV positive but have consistently had high cytokine transport molecule and complement split product C4a assays despite doing detox since early 2007.

I hope your findings open a new door to recovery for you.

BTW: I do share the questions voiced by Koan

Peace,
S
 

Jim

Senior Member
Messages
79
Likes
14
i'm nearly certain i tried naltrexone, to no avail. ampligen also did not help, unfortunately.
 
C

Cloud

Guest
Hey Jim....Thanks for sharing your results. Gosh, your XMRV is positive for both antibody and infection. I am hoping to not have the active infection because that will have implications for my Vistide treatment. I did the XMRV testing monday when I was there and will get the results when I return in 2 weeks. It seems your right that now you have something to target and that raises hope. I'm glad that things are moving forward for you.

Your labs look a lot like mine did before the Vistide. They have returned a lot closer to normal now. But yea, I wondered if the Cytokines would spike with a crash....it would make sense. Mine would have been off the charts had I done them 3 years ago when bed bound.
 

Jim

Senior Member
Messages
79
Likes
14
ross,

when u say your results look a lot like mine, which ones did u mean? my readings seem so darn high, but perhaps they are not as extreme as they seem. and which ones are close to normal now, and how close?

thanks,

jim
 
C

Cloud

Guest
Here is a copy of the results from labs done back in December (before treatment) and then again in June after 6 months treatment on Vistide.


LAB -------------------- Before Tx ----------------------- After Tx ------------------------------- Normal values

Elastace------------------- 585 ---------------------------- 198 ------------------------------------ < 140

Interleukin 6-------------- >7640 --------------------------- <14 ----------------------------------- < 24

Interleukin 8-------------- >5270 --------------------------- 262 ------------------------------------ < 14

RNaseL activity ----------- 906 ---------------------------- 110 ------------------------------------ < 50

TNFA --------------------- 496 ---------------------------- <14 ------------------------------------ <27

CMV -------------------- Positive ----------------------- Negative --------------------------------- Negative


Before treatment my VO2 max was 23.0 or 69% of predicted. This test was not repeated but is likely much improved.
 

JanisB

Senior Member
Messages
247
Likes
21
Location
Central Ohio
Just read Cheney newsletter (only the free part) and he seems to think Artemesin will help with XMRV because it suppress NF Kappa beta which is an inflammatory cytokine (I think) that causes the retrovirus to become active.

Wonder why J Mikovits didn't recommend this. Might you ask what she thinks?