Discussion in 'Fibromyalgia Main Forum' started by ask2266, Feb 27, 2007.
I was interested in learning where everybody falls. Mine has been anywhere from 10-49.
was that most people with CFS have very low NK cell activity.
I was 5 on a scale where normal range is 8-170. Yikes.
Plan to get retested soon.
My doc, an infectious disease guy in Kansas City, who specialises in CFS, measures progress this way, rather than testing for viruses.
The folks at Immune CAre 64 .. a company that distributes transfer factor.. told me several docs operate this way.
I would guess this question refers to NKC activity level (rather than NKC count). Please let me know if I'm wrong.
Off the top of my head, here are two reasons why NKC activity in CFS patients might be "normal":
1) If viral activity in the body is high, NKC activity should increase accordingly in order to help kill the viruses.
To my understanding, a value of (say) 20 is acceptable if there is little viral activity going on.
However, if there's lots of viral activity going on, a value of 20 may indicate that the NK Cells are way too inactive to get the problem under control.
2) Subsets of CFS patients may exist.
We do not yet know what causes CFS, and so it may be that some of us have similar symptoms but different underlying problems.
If so, some subsets may have normal NKC activation, whereas others have insufficient NKC activation.
My doctor currently gauges progress using antiviral treatments (pharmaceutical and other) on the measures below.
These tests were done in August 2006. Hopefully they will be better next time I have them done.
That's interesting that NKC activity can go up to 170. With my alpha interferon, it seems like mine should be up toward the top of that range. Having the actual number be 4 is pretty disturbing, therefore.
(My comments are from a previous post, and I'm just going to leave them in.)
This suggests presence of viral load in the body. Interferon Alpha alerts the rest of the immune system that viruses are present and that it thus needs to become more active.
NORMAL LEVEL: Less than 12.5
MY LEVEL: 412.0
(Yes, these are the right numbers. Approximately 40x the high end of the reference range. This means that I have an extremely large number of viruses present.)
NK CELL ACTIVITY
Measure of activity of Natural Killer Cells, sort of similar to T-cells. Some viruses can be killed only by NK Cells; T-cells are ineffective. (Rnase-L kicks in as a last resort.) Note that in Japan, CFS has been known by the name "Natural Killer Cell Dysfunction Syndrome" or something to this effect. With my viral load (measured by Interferon Alpha), a much higher NKC Activity measure than the "normal" cited here (more like 60-80) would be expected if my system were functioning normally.
NORMAL RANGE: Greater than 19
MY LEVEL: 4
Causes destruction of cells in order to kill viruses in them. This is a "suicide" strategy to get rid of viruses not being killed by the rest of the immune system.
NORMAL RANGE: 1.0-10.0
MY LEVEL: 40.00
Marker of cell death--caused by Rnase activity and other factors. The high Rnase-L activity makes a high level here expected. Cell death causes the body to have to work harder to replace the destroyed cells. If the body does not have the resources to do this, structural damage is sustained. (The heart problems observed by Dr. Cheney conceivably could be a result of this.)
NORMAL RANGE: 0-5%
My LEVEL: 10.70%
[This Message was Edited on 02/27/2007]
b for responses
keke1972 (who is three weeks into Valcyte usage) posted today that her NKC activity was 7.
according to blood test ordered at ffc, my natural killer cell functional assay (LU30) is.... 27. normal is 8 - 170. my ffc dr said that mine should be above 30.
thats all i know about this. i have not yet been tested for viruses, infections, etc. (I can only stand so many blood tests!)
How are you doing?
I was happy to hear about your progress with your adrenals and am hoping that you've maintained it.
thanks for asking. in a nutshell- the huge incredible wonderful improvement that the adrenal glandulars gave me last month has diminished, and turned into a nice solid improvement from where i was before taking the glandulars. It's like my body adjusted, or built up a tolerance or something. My adrenal specialist said that this would happen- going thru better times, then setbacks, then more improvement etc. So I am very glad that I am taking them, and am hoping to have more improvement.
It's so strange- the SAME thing happened w my brother. at first the adrenal glandulars totally lifted his severe and longstanding depression, but then about 5 days later, his depression came back. (as if he had built up a tolerance or something, too.) he wasn't AS depressed as before, but he was depressed again. so recently He took some bioidentical cortisol- just 5 mgs and now his depression has lifted again. the difference in him is NIGHT and DAY !!!!!
note- he recently had a morning cortisol blood test done, w results of very low (below normal range) morn cortisol. these 2 times are the first that he has been happy in SIX YEARS!!!!!! so hopefully we are on to something.
hope you are continuing to improve!!!!
PS- ASK2266- I apologize for going off on a tangent on your post. i was gonna just write a short answer, but i got carried away. Sorry!
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