HIV gives low CD4 count. XMRV gives low CD57 count? Possibly important for treatment

[redo]

It's well known that a HIV infection makes the CD4 count go down.

Taking a CD4 test (it's a cheap blood test) is a important marker to see how well the patient responds to treatment.

CD simply means "Cluster of differentiation". All known cell surface molecules which appear on white blood cells are given a CD number.

When someone gets a HIV infection, the virus gains entry to the white blood cells (T-cells to be specific) through the CD4 receptor.

When the infections is serious, this viral attack can be seen simply by doing a CD4 count.

As you can see here (this is a graph of a untreated HIV infection). When the viral load goes up, the number of CD cells goes down.

So to sum it up: HIV gains entry to the T-cells through the CD4 receptor.

What is not so well known is that very many of the CFS patients have low CD57 counts.
The normal range is from 60-360, and many have levels of <50.

As I've understood it, the CD57 has much of the same relation to Natural Killer Cells, as CD4 has to T-cells.

And with CFS, these Natrual Killer cell problems are not uncommon:
- Malfunctioning of natural killer (NK) cells has long been recognised as an important factor in the development and reoccurrence of cancer, and has been documented repeatedly in CFS patients (PMID 20032425).

So what I would like to see would be tests of CD57 done prior and after treatment has begun. It's cheap, and done by labcorp (and many others).

It's so common in all of the syndromes that have been linked to XMRV, to have low CD57 counts... Examples are CFS, FMS, atypical MS.

 

[aiden424]

I was told by my doctor that lyme makes your CD57 counts low. My CD57 count was low but came up after treating lyme.

 

[Rivotril]

Prof. De Meirleir also tests patients on CD57 NK cells absolute count, and this test is preformed by Redlabs Belgium. On their site there's the following information:

CD57+/CD3- ABSOLUTE CELL COUNT (Code: CD57)

Background

CD57+/CD3- cells are a subset of NK cells. Their exact function, and what differentiates them from CD56+ NK cells, is not well understood. The absolute number of CD57+/CD3- cells is low in patients suffering from chronic Lyme disease (a disease that follows an infection by a bacteria called Borrelia). Patients with very low CD57 have significantly more co-infections and persistent immunologic defects than patients with higher counts. In patients that respond to antibiotic therapy, the number of cells come back to normal, hence this is a useful marker to follow the effect of a therapy.

http://www.redlabs.be/red-labs/our-tests/immune-function-assays.php

in 2001, Stricker et al published a paper about low CD57 counts in cronic lyme patients:

Immunol Lett. 2001 Feb 1;76(1):43-8.
Decreased CD57 lymphocyte subset in patients with chronic Lyme disease.

http://www.ncbi.nlm.nih.gov/pubmed/11222912

Mikovits suggested in her recent Q&A session also that chronic lyme patients may be also XMRV-infected

But it's in my opinion possible that CD57 is an indicator of a persistant chronical infection, of which chronic lyme is just one opportunity.

I am not diagnosed with lyme but have a chronic baronella henselae infection, and my last CD57 count was 24, which is, really low.
And I know other patients that are also tested by De Meirleir who had neither of this infections (no lyme nor bartonella nor an other tick borne disease) who also have CD57 counts below 30...

I see on the Vipdx site (previously known as RedLabs USA) that the're not testing on it. But De Meirleir tests it almost on every patient, as far as I know

 

[jackie]

oh boy! I dont think this is off-topic. hope not! (I have been thinking about Tcells for weeks on my own...and I admit that I dont understand the science really, but am trying).

I cant get the idea that IRIS (immune reconstitution inflammatory syndrome) MIGHT be taking place in some of us using long term/high dose AV's (which would be an indication of possible improvement).

Just as the cd4 count DROPS in an hiv patient, and also in a person with say, some cancers, or even someone with rheumatoid arthritis (after being given immunosuppressants), AND in many pwc's (i assume from viral activity)...after treatment with HAART, CHEMO, AV'S...the cd4 count will sometimes SURGE, and elevate - causing a resurgence/reactivation of some opportunistic infections (CMV,VZV especially, and other Herpes, Pulmonary &/or Cutaneous Aspergilliosis, etc.).

This is usually a self-limiting syndrome (weeks-months?) although in an aids patient/cancer these infections must be stopped/treated as they can be life-threatening (with AV's such as acyclovir, and cortocosteroids)

In other words, the patient/sometimes even the doctor, thinks the patient is getting worse (because of the development of additional/new co-infections).....when in reality this "phenomena" is signaling that the immune system is returning to a more normal state! When IRIS is over...the patient is on the mend.

I think that if this CAN be happening to pwc's it may mean that the use of antivirals/RVA's really CAN help...if taken for a long enough time and in the right dosage (AND it would be nice if we had specific av's to target specific viruses - which we DON'T yet! such as some for all the Herpes!)

I guess i want to know why IRIS can't happen to pwc's.

I do know that IRIS is uncommon, not a lot of info (more anecdotal than actual studies), little understood, considered a "phenomenon" AND can happen in HIV/Haart, some cancers/immunisuppressents/chemo. R.A. or Lupus/immunosuppressents...so why not me/cfs/...with treatment by AV's (or RAV's?)

This is the first I've heard of CD57! can you tell me any more...or do we just ask for the tests?

(BTW...I have chronic VZV, cmv, hhv6, enteroviruses...with a characteristically LOW cd4 - and in the past months I've had an ADDITION of HSV-1, INCREASE in shingles......all the while my cd4 count was SURGING to nearly 1500 (high end of high!...cd8 is normal - 584) which should NOT be happening! and i've been on 3200mg acyclovir for 4 years straight)

Now i wonder how cd57 fits into my picture?

Any thoughts, guys?

jackie (trying to not look stupid!:Retro wink

 

[jackie]

i just re-read what i wrote (just woke up/no coffee)

Had my coffee and thought I'd better explain...better.

IRIS represents a restored ability to mount an "inflammatory response"...and this response doesn't necessarily signal reactivation or worsening of symptoms of the "PRIMARY DISEASE" (mistaken for a true disease PROGRESSION - or even INEFFECTIVE treatment), but rather a "protective process" initiated by the body - (indicating a better chance to defeat infection - leading to eventual improvement of the disease...such as that seen in people with HIV responding to HAART ...you know the "hale and hearty" comment, as the doc said!)

This is the "paradox" of IRIS (and it is even referred to as a "paradox"!)

(so...if this can't happen (real science, I mean) I have to crawl away in embarrassment...tail dragging!:Retro redface...j

 

[gracenote]

I just checked my past blood tests to see what my numbers were for CD57. I have no idea what any of this means.

Abs. CD8-CD57+ Lymphs Reference Interval 60 - 360

May 06 126
Sept 06 72
July 07 176
Jan 08 242
Nov 08 52

I've been diagnosed with chronic Lyme. Currently I'm un-diagnosed with it.

 

[redo]

I was told by my doctor that lyme makes your CD57 counts low. My CD57 count was low but came up after treating lyme.

CD57 has for long been tied to stage III lyme. Stage III lyme and CFS have pretty much the same symptoms.
What happens with lyme is that when it's successfully treated, the CD57 normally goes up to normal levels. But, this is far from always true.
What I suspect is the case is that when the lyme has been treated, the immune system has much better odds of handling a XMRV infection, and thus the CD57 often goes up with successful treatment.

Prof. De Meirleir also tests patients on CD57 NK cells absolute count, and this test is preformed by Redlabs Belgium. On their site there's the following information:

[Abstract]

Thanks! I knew he tested for CD57, but I had never seen that before.

(...)IRIS represents a restored ability to mount an "inflammatory response"...and this response doesn't necessarily signal reactivation or worsening of symptoms of the "PRIMARY DISEASE" (mistaken for a true disease PROGRESSION - or even INEFFECTIVE treatment), but rather a "protective process" initiated by the body - (indicating a better chance to defeat infection - leading to eventual improvement of the disease...such as that seen in people with HIV responding to HAART ...you know the "hale and hearty" comment, as the doc said!)
(...)

Thanks for the info.

I just checked my past blood tests to see what my numbers were for CD57. I have no idea what any of this means.

Abs. CD8-CD57+ Lymphs — Reference Interval 60 - 360

May 06 — 126
Sept 06 — 72
July 07 — 176
Jan 08 — 242
Nov 08 — 52

I've been diagnosed with chronic Lyme. Currently I'm un-diagnosed with it.

Interesting. Could you write down the treatment you have got in this period?
Is May 06 your first test?

 

[Nina]

I have a CD57 of 24 (60-360). All lyme tests were negative, I might have chronic Bartonella but that isn't confirmed (only low IGG titers). Rivotril, may I ask what blood test you've had done to confirm you B. henselae diagnosis?

 

[gracenote]

Interesting. Could you write down the treatment you have got in this period?
Is May 06 your first test?

These are the tests I have in my file. I don't have access to my earlier records right now.

During these dates, I did some antibiotics, but not long term. The final date (Nov 08) I was on Valcyte (June 08 - Feb 09). I wouldn't be able to figure out what might account for the other changes, but it wouldn't be any particular treatment protocol.

 

[Rivotril]

I have a CD57 of 24 (60-360). All lyme tests were negative, I might have chronic Bartonella but that isn't confirmed (only low IGG titers). Rivotril, may I ask what blood test you've had done to confirm you B. henselae diagnosis?

my IGG was 1/320, don't know if it's really high or something.
So I had the bartonella antibodies test...
I don't know really, but the CD57 didn't get up after antibiotical treatment, so De Meirleir concluded this (chronic infection).


And about XMRV (and these are no facts but just my own view):
This might weaken, under certain conditions/in combination with other factors, your immune system, giving infections the chance to persist, so that they weaken the immune system even more, and you get in the situation that your body can't fight them anymore, so you stay in this condition. That might be the case in chronic lyme/bartonella/other infections and maybe XMRV is really the starting point of all of this, kind of a "condicio sine qua non".
In that case, it might be true that, in a certain stadium, XMRV infection is (strongly) associated/correlated with low CD57 counts

 

[jackie]

Grace...fascinating! Un-diagnosed as in recovered or non-symptomatic, or labs?

I'm looking at the reference intervals "cd8-cd57...60-360.......2 wks ago my cd8=584 (but was told that number was "normal") I do know there is a ratio of cd4-cd8..can't remember how to figure it out! or what the significance is. I was neg for Lyme...but the test wasn't at a "good" lab - does that make a difference?

As i do have many infections/viruses and immunological defects (such as shingles appearing one both sides of the body at the same time - which USUALLY only happens to an "immunocompromised" patient)...i'd have to ASSUME that my cd57 count would be low, as my cd4 WAS...probably too late now to have it checked, as I'm in the upward surge. too bad! (why aren't these simple tests being performed on pwc's...when the results could signify so much!!??)

So glad redo brought this up...if more pwc's KNEW what to be demanding in the way of tests - this practice might become commonplace! you know, when I asked my PCP to perform the simple T-cell count - he refused! Made up some excuse that if he tested for "this" my insurance Co. would want to know how he intended to "treat" my results (as he had to answer to "them")...he said this test could only be done by my I.D. doc! The I.D. doc said "nonsense!"...and performed the tests. What a run-around! (no wonder many folks don't have the energy to fight for treatments!) jackie

 

[redo]

I was neg for Lyme...but the test wasn't at a "good" lab - does that make a difference?

If you have been sick for months, then I guess it wouldn't make much of a difference. But if you have been sick for over 6 months, then it makes a big difference. The thing is that the standard tests, which are done on blood and spinal fluid, have not been validated for illness which has lasted for more then 6 months. (Lyme goes from stage II to stage III often at around the 6-12 month mark).

Anyway, if you do have lyme, then it's a long way to improvement. Hard to treat.

Maybe, if XMRV plays a role, it would be much easier.

 

[acer2000]

FWIW - The CD57 count is most associated with late stage lyme disease. The NK cell subset studied with CFS is the CD56+ NK cells, which is a different (yet related) type of NK cell. CD56+ NK cells have been shown to be lower in number and function in people who have CFS. CD57 NK cell numbers seem to correlate with treatment with antibiotics for Lyme disease.

Late stage Lyme and CFS have similar symptoms, and its certainly possible that people with Lyme who aren't getting better may well also have XMRV or whatever ends up being the cause of CFS. But it would be a mistake to lump them together or to say that Lyme is a "co-infection" of CFS. Lyme can cause serious disease on its own and unlike true "CFS" can usually be treated successfully with the right type of antibiotics. (The earlier its caught the better). Like CFS, the problem is often in diagnosis, with the tests for Lyme not being all that sensitive.

Anecdotally, I have spoken with a decent number of late diagnosed Lyme patients who have had the "CFS" workup along the way, and while their CD57 is low (and goes up on lyme treatment), their CD56+ counts and functions don't look like CFS patients. They are normal or high.

On the contrary I have "CFS" and I have normal CD57 counts, but low CD56+ number and function.

 

[redo]

Well, the only study that exists on CFS and CD57 is the one referred to by 'rivotril' earlier in the thread. So what's needed is a larger study on that.

You can see what the most recognized lyme scientist says about it here (he's also the person who found the bacteria in the first place (in 1982) interview)

Of the half a million doctors in america, there are only some hundred who treat lyme in the late stages (with a different approach then it's treated in the early stages). And that's true about the diagnostics as well. So if someone gets late stage lyme, and goes to a doc, chances are high they wont get the correct diagnose. They most often end up with other diagnoses, such as CFS, FMS, MS, ALS - based on their symptoms (see trailer of UOS).

What I am saying is not that "all ALS patients, or patients with other syndromes have lyme", what I am saying is that almost all of the lyme patients get various syndrome diagnosis, because lyme is not recognized.

As for what happens to lyme patients that don't get better... It's practically no-one who recover 100% (from late stage disease). Most get 25-75% better with extensive and long treatment, but very few recover. So that group is a large group.

I am not suggesting that lyme is a co-infection of CFS. So that must be a misunderstanding.

What I wrote, was that I hypothesized that the CD57 goes up [in lyme patients] because the immune system functions better when the lyme has been treated, and therefore are more able to handle XMRV infections.

There have been studies on MS patients as well, which have shown that they also have abnormally low CD57 counts.

I've never heard of lyme or CFS patients being tested for CD56, but that's interesting. As you wrote, CD57 and CD56 are very related.

 

[gracenote]

Grace...fascinating! Un-diagnosed as in recovered or non-symptomatic, or labs?

I was first diagnosed with chronic lyme in 2004 by two lyme literate docs. Since 2006, it seems that every other appointment (with one of these docs) I have or don't have lyme. Either way, we've never really tried to treat it. I have tested everything from negative to positive on the Western Blot with positive bands that are said to be significant. I probably have every test that would be important, but don't always know what I'm seeing. We've been going around in circles whether to work on my gut, my viral infections, mold (mold is a big one), lyme, pain, sinus-type issues, OI, etc. We are confused. XMRV has not yet parted the clouds.

I am not lyme-literate myself, although I've tried to become literate. I do know that I could easily find a doc to tell me I have chronic lyme, but for some reason, my current doc doesn't think it is active(?). My HLA shows both mold and post-lyme.

 

[jackie]

Grace..I don't know what to say! How frustrated you must be...and yet, these back and forth dx's seem to be the "norm" for us! The worst part of it is thinking of all the treatments you might be missing out on - how much farther along you might be...if just ONE doc decided to go out on a limb and TREAT something! (Even "symptomatically")...ANYthing!

(I go round and round with my Neuro about whether or not I have "dementia"...if you can believe that! HE can't seem to make up his mind (and I think I know which one of us REALLY suffers from it!)

And don't get me started on "possible MS"! 12 yrs ago I only had two lesions on an MRI, (HE wanted to see 4!) so not even a trial of interferon to see if that would help my symptoms..I continued to deteriorate - and now that window of opportunity has been lost to me.

(btw Redo - spinal tap didn't show lyme but that was done MANY years ago!)

jackie

 

[DysautonomiaXMRV]

Hello everyone.

I wanted to let you all know again (although it was shown on Page1) that a CD57 Absolute can be obtained from Red Labs in Belgium (Europe). The blood must get there within 24hrs, I believe this is feasible from the USA if you use FEDEX overnight, however first I would check with non CFS type American labs, and Vipdx Well done for discussing this, thinking about this and trying to work things out for yourselves. I would imagine that CBT/GE/Pacing and family counselling won't do too much for XMRV infection, which is all our various governments are recommeding as 'evidence based' treatment.

So we need new evidence, lets go get it. Nothing like an 'expert patient' to hurry research along and annoy a desk doctor!

If we now know (from whispers) that NKC Cells are infected with XMRV along with T & B Cells that we knew before, and we get a whole bunch of people with XMRV who have bad CD57 counts - then we have some more scientific evidence to play with as patients. In other words, XMRV should cause immuno supression and the SCIENCE article shows that (e.g. we can verify comments from the SCIENCE paper ourselves) but we need patients out in the community find it for themselves, and showing their own doctors.

Thus the WPI's findings become realised, rather than theorized. Even if the SCIENCE paper is fact, patients are sceptical, due to sceptics!

I myself have low CD3 T cell count, XMRV and inflammation. Our main barrier other than funding tests (very expensive) is finding laboratories we can send our blood samples too without needing to be 'spun' (needs a centrifuge in a lab). Meaning a lot of us, cannot find out due to barriers in the delivery of samples from home to companies who can help us - at a price.

P.S Try and get Perforin tested also, this is linked to NKC cells, and CD57 is linked to NKC cells also obviously. Full NKC assays are available at Vipdx in the states and T & B Cells can be done at Focus in the states also. NB: It won't show they are 'infected' with XMRV, just if the numbers are low - which would be abnormal, unless of course one is immuno supressed.......

So to recap, I'd be looking for every test for inflammation, and immuno supression if XMRV+. Saw the other day C4a (complement) is elevtated post exercise along with what we knew already, cytokines & chemokines. CFS is associated with cytokines & chemokines as Judy Mikovits mentioned this before the news on XMRV even broke. So logic says, these patients had XMRV. Did they? We need proof.

Then you have your evidence, that your CFS is caused by XMRV. (Naturally due to a the nature of CFS diagnosis, not everyone will be like you).
Time to ignore labels, and get tracking down why you personally, are chronically ill. After that, time to do the politics and think about everyone else.

The only person who can help yourself ultimately, is yourself - then you can help others when back to health and go on a crusade of nursing/medicine/psychology etc. I'm sure we have a lot of nurses in the making here.

Thank you.

 

[LJS]

I have Chronic Lyme and XMRV. I wanted to make a note for people who say they have tested negative for Lyme. The tests are horrible, all my insurance paid test, Labcorp & Quest labs, came back negative. I got an igenex test done and I was 7 bands positive, clearly Lyme positive. So make sure you get an igenex test if your doctor thinks you could have Lyme.

On CD57 testing, my LLMD does not test for it because he finds it is all over the place with his patients and can not be used.

 

[Impish]

Interesting

I did a google scholar search and came up with a large number of studies that have shown CD56 and CD57 values are low in CFS. I also found one person who tried a treatment based on this and had some results...

I will get ahold of these studies later. I have a couple of relatives who are in the virus "biz". I will get them to explain this to me and report back.

 

[Impish]

This also would then make sense why apligen (poor spelling) works. If it increases NK function/number it would resist XMRV if in fact XMRV is the cause the cell count reduction.