i think whats happening is, i have a co-infection. HHV6 or something. maybe now my system is able to respond to the infection so thats why some other inflammatory markers have risen?? ugh. i wish i could somehow speak to dr. peterson. how can i make sense of this stuff?
i have a little energy on some days now, and i dont feel too sick from the neck down. but, of course, things are still horrible from the neck up, which is the only thing i really care about!
in back of my neck..in back of my head...i feel this churning burning and swelling...like its "full". something is living in there!!
how interesting that the MIP1a and MIP1b are normal now....thats the macrophage inflammatory markers
sorry for my weird typing and mood swings on this board..i am so foggy and everything is confusing, even my feelings
Hi Sue,
Are you sure you have the units of the numbers (for example, mililiters Vs. liters) correct? I mean - are they using the same units?
And, you wrote that the normal range for MIP1 a is "169" and for MIP1 B is "304". I guess you meant something like "<169" and "<304", but can you make it clearer for us?
I guess that it might be possible that if you will upload scans of your original test result papers we would understand it better (be sure to not scan your personal details, unless it doesn't bother you).
Anyway, your results are, indeed, confusing - at least to me. But there are a couple of intersting things: We recently read an abstract of a work done by Dr. Silverman and his colleagues, were they infected a prostate cancer cell line with XMRV and looked what happened to the cytokines and chemokines there - and they said that they biggest change was in IL-8 - it was increased to a level 6-times higher than what it was before, and that's just when they looked at it for 48 hours (imagine what it might cause when it's there for years). When you were "just" 5 months into your ARV treatment your IL-8 levels were 1930.3. 7 months later, a ytear into the ARV treatment, there was a 14.65-fold reduction in it's levels, and the levels were 131.7. Still not normal (normal is <14) but much better.
Your MIP1-a and MIP1-b, which were very high, were hughely decreased and their levels are now normal. Notice that MIP1-a, MIP1-b and IL-8 are significantly (actually, very significantly) higher in patients than in controls in the table that Dr. Mikovits showed in one of her lectures, which I've attached to this message - that is a table that shows these cytokines/chemokines levels in XMRV positive ME/CFS patients, versus controls.
Now, the problem is, that you have also two variables that are on the opposite side, allegedly do not support the theory: TNF-a and IL-6 are higher in patients than in controls in the WPI levels, but although you took 7 more months of ARVs, your TNF-a and IL-6 levels were increased, and in very significant numbers.
Now, IL-6, I don't really know what it does. But TNF-a was lately shown in a study to increase XMRV's replication. One theory could be that your body did not produce TNF-a when you had a lot of XMRV in your body, because it understood that TNF-a helps XMRV to replicate - and now, when you have less XMRV in your body, your body lets TNF-a levels increase - but the question is: Why let it increase much more than normal?
Dr. De-Meirleir also found that IL-10 was increased in a group of 16 ME/CFS, XMRV positive patients - but your's got significantly increased when you got on with the antiretrovirals.
I wonder if something like other viruses, or the inflammation, are helping XMRV to replicate, and the ARVs helps (preventing it from replicating even more), but can't get you to actually feel well (because it faces strong forces - perhaps the viruses and inflammation, that helps XMRV replicate - and therefore the ARVs can counter that, but cannot totally defeat it).
But, that's much more question and theories than answers.
Two more questions that I'd be glad if you'll answer:
1) Do you have such (or somewhat similar) cytokine/chemokine test results from before you were on antiretrovirals?
2) Have you recently checked for levels of other viruses? If so - did you see they were increased on ARVs? Decreased? Not changed? Or perhaps you couldn't compare because you had no previous results (or the result was just "positive" or "negative" - which, I actually guess it was...?)?
I also attach Dr. De-Meirleirs poster (results regarding immune profiles of 16 ME/CFS XMRV positive patients).