One of the biggest problems in monitoring ME/CFS patients on antiretroviral therapy is the lack of markers to evaluate the drugs’ effects on the immune system. For patients on medications to treat diseases like HIV and hepatitis, often their immune markers improve and the viral loads decrease well before the patients feel better. This phenomenon is particularly common in patients with longstanding illness.
CD57
However, as there is no commercial viral-load test yet for XMRV and as immune markers haven’t been established, patients on antiretroviral (ARV) cocktails are flying blind. One patient who’s been on ARVs for six months reports to CFS Central that although she isn’t feeling significantly better physically, two markers have been steadily rising: CD57 and Vitamin D. CD57 is a natural killer cell often depressed in Lyme and CFS patients. The norm is 60 to 360, but some Lyme-literate physicians believe the count should be at least a hundred, and that the curve has been skewed due to so many Lyme patients getting tested.
Prior to her initiating therapy, this patient’s CD57 hovered around 25—and it had been stuck there for several years since a serious crash that left her mostly housebound. Prior to that crash, she was ill but more functional, and her CD57 count registered between 55 and 60. After six months on ARVs her CD57 is 74, an increase of 49 points.
Vitamin D
Her vitamin D levels have jumped from 31, where they had been for several years, to 47. Optimal is considered 50 to 125 nMol/L. Prior to her being on ARVs, five thousand IUs of Vitamin D daily for three years had improved her vitamin D status only from 29 to 31.
Of course this patient’s findings are purely anecdotal, but they shouldn’t be dismissed either. Vitamin D is easy to test, and in the U.S., Labcorp tests for CD57.
Cholesterol and blood sugar
Two other interesting tidbits: A few patients have reported to CFS Central that their blood sugar has normalized on ARVs and their cholesterol has dropped. One pre-diabetic patient forced to eat an Atkins diet of mostly protein and fat to avoid spikes in blood sugar after meals no longer has that problem on ARVs and can eat carbohydrates without any increase in blood sugar. This is in contrast to the more common reaction of HIV patients on ARVs, who can experience both an increase in cholesterol and blood sugar.
------------------------
I'd be interested in hearing from patients who've had significant changes in their vitamin D or CD57 status on ARVs—or anything else noteworthy. mindykitei.cfscentral@comcast.net
.jpg){kind=small}
Thanks for the report Mindy. What about CD56? CD56 is the one that most CFS docs keep track of. I'd be interested in that one too..
ReplyDeleteI have ME/CFS (10yrs) and I'm XMRV+ (antibody test VipDx).
ReplyDeleteIn june 2009 CD57 was included in a bloodtest and my count was too low: 47,4 (reference range: 60-360).
Perhaps this is a common finding in ME/CFS patients?
Els
oh, and my Perforin mRNA levels were too low too (195 with reference ranges from 250 tilll 750).
ReplyDeleteIf I understand correctly Perforin gives an indication of NK cell function as well.
So perhaps this could be used as another second "marker" to monitor ARV response?
Els
I would like to see a discussion of specific tests, with reference ranges, names, types, and especially test identifiers and labs.
ReplyDeleteIn my case, I never got a number. At first, I got this:
| CD 57+ | PEND | % | 7-28 |
where PEND means pending.
Then I asked the doctor's office and was told that the result was qualitative -- no number whatsoever. Just low, high, etc.
I didn't find that useful.
Samuel
Samuel Wales,
ReplyDeleteGet the CD57 test done at Labcorp and you'll get a number. As I mentioned in my post, the reference range at Labcorp is 60-360, but some doctors believe your count should be at least a hundred.
I'm XMRV+ and my CD57 NK cell count is around 25 (60-360). I am not on ARVs due to lack of direct clinical supervision.
ReplyDeleteThank you Mindy, for continuing to support progress TO HELP PATIENTS despite all the confusion still existing in the research community. And of course the politics, working hard to ensure the confusion remains as long as possible. Bless you.
ReplyDeleteThankyou for this.
ReplyDeleteI will be interested to see what further information comes out regarding the CD57 count, as mine was a low 8 while my mother's and sister's counts were considerably higher....even though they have significantly worse symptoms than myself. I find this strange (and was a little scared to see my results!)
Thanks again.
Mindy:
ReplyDeleteI find the vitamin D question very intriguing. I have one reader who has been e-mailing me about the Marshall Protocol. The idea is that the vitamin D receptor is blocked, and you need a medication called benicar (a mild blood pressure medication) in order to unblock and repair the vitamin D receptor so that the proper amount of vitamin D (and in a form the body can use) is produced, as well as a number of other functions performed by the VDR receptor.
Here's a link: http://mpkb.org/home/patients/protocol_overview
All the best,
Kent Heckenlively
Isn't it amazing how doctors stubbornly insisted that low Vit D must be due to lack of enough sunlight... no matter how many times you point out that their hypothesis does not fit the facts?
ReplyDeleteMindy thank you for this post. I have ME/CFS and recently found lyme and my CD57 is low. The labcorp test was about $150 out of pocket, medicare doesn't recognize test...ugh.
ReplyDeleteI plan on running the test 2X/yr. to get an idea of how I'm doing. I really can't afford it more often. Also, VipDX, elastase and RNaseL tests may be helpful. I'm still awaiting my XMRV results.
Karen
Thought I had the full Lymphocyte activity profile done with LabCorp. But my records do not show a cd57 alone, rather I show both percentage and absolute count for cd8+cd57+ lymphs....Neither of which has a reference range described in this thread. Different test for the cd57 alone I guess.
ReplyDeleteI haven't been on arv's anyhow, but did have dramatic immune system changes on av's. Most of the profile looks good, but strange is that my NK cell Lytic unit (IU30) has dropped to a 1 (one). It's certainly not correlated with symptom severity as I had thought.
At the beginning of antibiotics, my CD57 tested low at around 25. It moved to middle normal after about 6 months. Other killer cells tested normal at this time, too.
ReplyDeleteVitamin D25 levels have always been low for me.
Thanks for the heads-up. I'll track these when on treatments.
hi mindy!...i nearly missed the "call" for those on arvs to contact you (i tried to use the comcast.net address - but it wouldnt allow me to, unfortunately.)
ReplyDeletei thought i was the only person experiencing odd/unusual lab results during my arv use!? i am NOT on the "usual" cocktail (haart for example) - of arv's, many are using. i'm taking another arv...and though it may be merely a coincidence...my previously high C-reactive protein levels (6.66H), as well as my stubbornly high total cholesterol/triglycerides (289/235)were cut in half (with a perfect # of 2.00=CRP)....6 weeks after adding my arv to my long term av (5 yrs. high dose acyclovir). i dont know WHAT this means yet (i didnt anticipate this..though its quite a welcome surprise!)...but i should have more answers after my doctors appointment, next week. ill post again, if this is significant.
actually, i am the MOST intrigued by the lowered C-reactive protein number...as CRP is a measure of an "inflammatory condition" showing up in the blood..my numbers have been steadily rising (from 1.61/2007 - to 6.66/2010) over the past 4 yrs...and ive been attempting to suppress chronic viral activity (VZV/hsv-1 etc)through the use of the high dose av.- with some success.
btw, im doing FINE on my arv...no side affects/good labs...improved cognition/memory/PEM - though still housebound...(ive had severe/housebound/bedbound dx'd ME/cfs for 15 yrs, and ill many years of my life previously, undx'd)
i started my arv at 1/2 dose in early dec...full dose for 1 month now.
oh...my vit d level was an abysmal "11"!...now its at "27" (still too low...though i have been sporadically adding vit d - so my modest increase may NOT be any part of arv use - more than likely the result of supplemental vit d. (so hard to tell...and i am very cautious in self-reporting any anecdotal "improvements").
i have been under the care/close supervision of an expert me/cfs ID doc, for 5 years.
thanks so much for all the help you give our patient community. i often "quote" (and link) you on my FB page!
jackie (ill certainly be checking into the cd57 test)
I have been on 50kiu vit D for several months. I have been feeling better in general, although with some cyclical symptom patterns. I didn't make the connection to improvement due to vit D but maybe it is.
ReplyDelete