posted
Lots of things effect the killer cells. Here are some of the diseases my LLMD mentioned that can cause an abnormal cd57 test. This is why he doesn't even use the CD57 test.
Cancer HIV and other viral infections Hep TB GI disorders Malnutrition
The cd57 is far from a specific marker for Lyme.
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disturbedme
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I am getting so annoyed by the things that are constantly being changed....
For example, CD57 used to only be a marker for lyme... and now it's not and supposedly SOOOOOOO many other things affect it, which is really aggrivating....
Band 41 used to be only a few things that it could be, but now everyone claims it can be anything, even triggered by menses, which is beyond ridiculous to me. So... it's just sad how nothing is ever concrete here... augh.... *bangshead*
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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seekhelp
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I had no idea that many things cause the CD 57 test to go down! That's crazy. Another waste of a test now.
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disturbedme
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yeah, it's sad how many tests seem like a waste. The CD57 was something I've always counted on to mean I have lyme since my Western Blot was complete crap.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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seekhelp
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posted
Next, if I hear the Igenix WB is bad, I can scrap my diagnosis. Who knows someday. I hope not.
A lot of these specialty tests/labs don't seem like they payoff in the end. A lot of $$$, but if no one believes in them outside of a few, what's the point? Docs must believe to be willing to treat.
I still have many concerns about many of these specialty labs. I'm not referring to Igenix, but the idea in general.
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Lymeorsomething
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posted
This is still debatable. Does anyone have the literature to show what suppresses the CD-57? HIV does but not often from what I've read. Cancer is a yes. We need to see more paperwork on this...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
So far all that has been said is conjecture from, this is what my doc said about this test - kinda throwing the baby out with the bath water if you just throw out a whole test with nothing to back up why.
I've been looking into this myself, and there are many conflicting views, but a lot of the views are just based on - it's what my doc said, with nobody able to site anything to back it up.
If all those things really do affect the CD57, I want to really know and where they got that deduction from, what studies or literature.
I had read a recent thing, wish I had a link, may try and find it later, that talked about HIV numbers with the CD57 compared to Lyme, with HIV all testing around the 100 area, which was lower, but only chronic Lyme was getting the number in the 10-40's where a lot of us test.
I think there are other things that can affect the number just how any immune suppressing illness would knock down a lot of the numbers across the board some, but from my understanding so far, it seems that only Lyme has been shown to get the CD57 numbers in the 40 below range, but I may be wrong myself.
I know there is some literature on this somewhere, anybody got some links??
Posts: 17 | From Near Ft. Wayne. IN | Registered: Mar 2009
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posted
Thanks unshakeable, I have found the same thing. Everyone says, "lots of things". In my research through a Medical School Library comes up with Cytomegalovirus and EBV can lower, but nothing lowers under 60. Not HIV. Cancer it is always higher. So if so many people throw out the CD-57 as being not Lyme specific. . .bring 'em on. I want to see the research.
posted
I've found that many things can cause an ABNORMAL cd57, but all of those things (malnutrition, alcoholism, cancer) show that the numbers are increased.
I'm especially interested in pediatrics.
Posts: 564 | From Tick Hell | Registered: Oct 2008
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Hoosiers51
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posted
Okay, let's say you have an animal in a box, and you don't know what kind of animal it is.
Let's say you really wanted to know what kind of animal was in the box (I don't know why...maybe it's crucial to the survial of the planet). There is a "test" where you pay $100, and they tell you the color or colors of the animal.
The test comes back, and it says, "orange and white."
You're HOPING it's a little orange and white kitten.
You think about it. Not TOO many animals on planet earth are orange and white. But there are some other ones. One that comes to my mind is what we in Florida called a "corn snake." Some species of fish are orange and white.
I'm SURE there are other orange and white animals. I'm also sure you can't CONCLUDE that just because the animal is orange and white that it's a kitten.
BUT...a professional would consider these results "significant" towards building the case that is IS a kitten.
This is band 41. This is the CD57.
They build a case. If the color came back as "green" you could ditch your kitten idea. So yes, these tests are significant but not definitive.
They tell you, "This MAY be a kitten I'm dealing with...there's still a decent chance....I have to keep looking for more answers."
Is that a stupid analogy? I dunno, sorry, it's the best I can come up with.
We just need to keep an open mind. Consider these tests as building a case towards Lyme. But you still need to be prepared that it could be a different animal (disease).
So you can look at this as, "drat! I don't know for sure." Or you can look at it as, "yay! this supports what I was thinking that it was, and it's telling me not to give up the idea yet."
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Hoosier51, your analogy does make sense, but let me see if I can further using yours, explain why I think that the test could prove to be very useful to Lyme with more research into it.
It's not a direct test of the Lyme, but what it in a way leaves behind, and like with your analogy, if it comes back certain colors, you can narrow it down and can be indicative of if it fits.
But this is what I'm thinking, is that what if the color combination came back, a certain way, each time for the same animal, that only that one animal has that color combination. You'd have to deduce when it comes back as that color combo, it is that animal.
Even though it wouldn't be a test specifically for that animal, if the test results in unique results specificly for that animal, wouldn't that test be diagnostic for that animal??
Did I lose everybody yet? Not everyone? Okay, try this then.
If you take that set of ideas, and use that with the CD57 test results, maybe you can see what I mean.
The argument that all those other things affect the results to me should be kind of moot. Any kind of infection or illness is going to affect your immune system numbers in some way.
That shouldn't be the argument, the argument should be, is HOW they affect the numbers.
From what I have found so far, even though other things can affect the CD57 count, the only reason they have found for very low numbers, 40 and below, is a connection that the patients are possitive for bb and diagnosed with chronic Lyme.
So, if testing is done, that rules out all other illnesses for getting the number very low, and then studied of all those with very low number's, the incidence of being positive for Lyme, if the number is very significant, how would it not be diagnostic for having Lyme, if your number does come back very low? (and they find that is the only way the number can get that low)
Now, none of these studies have been done, but from what I've read so far, of the studies done, even though other things affect the count, the only reason they have found so far for very very low numbers of this specific marker, is a concurrent bb infection.
What I am looking for, is any study that can show any other illness that would affect the count the same as Lyme.
My brain has been used up for the day now, lol. I hope anybody follows that.... run on sentences galore!! wooo
Posts: 17 | From Near Ft. Wayne. IN | Registered: Mar 2009
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Hoosiers51
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posted
That does make sense, what you're saying.
My eyes are bugging me so I was only able to scan it (it's not that it wasn't broken up enough, just that my eyes are focusing in and out), but I think I got the main points.
So is it really only Lyme that they see the very low scores...ever? (40 and below)
If that is the case, than that is a big breakthrough.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
That's what I'm not sure about though, and I don't think has been fully studied is the thing, is if Lyme IS the only thing to cause very low scores.
I just have yet to see anybody site anything that shows another thing that does.
Everybody just says that other things affect the score, but that shouldn't be the point, the point should be HOW they all affect the score.
That would be a huge breakthrough if further down the road with more studies they were to find that the criteria of having a very low number is unique to Lyme, and I think that is what the origional testing was all about.
Then you got in everybody saying a lot of things will affect the numbers, kind of missing the point to me.
That's like the study I read on HIV and the CD57, it did test lower, but only in the low 100's with HIV, instead of 10-50 where most chronic Lyme patients first test at.
(you know, I may just be talking out of a mental herx too, but this makes complete sense to me, if I'm mistaken on my points, please point out where my head went wrong anybody!!)
Posts: 17 | From Near Ft. Wayne. IN | Registered: Mar 2009
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Hoosiers51
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posted
You're fine...those are VERY valid points.
I did look at the study and the table showing the actual CD57 values on HIV patients vs. untreated chronic Lyme, chronic Lyme during treatment, etc.
Found it very interesting.
There was also a "range" in scores among the patients they tested (which might be more telling than the averages), so that same table shows the highest and lowest scores for each group.
My CD57 score was still lower than the lowest HIV patient's (of those tested) score.
The main point is that there are trends, and we need to be observing the trends.
There is also the process of elimination thing. If you can't prove Lyme, but you can prove it's NOT cancer, HIV, etc....that helps too.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Hoos. . .where is that study, the one on HIV?
Posts: 564 | From Tick Hell | Registered: Oct 2008
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Hoosiers51
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posted
You'll see the table with the CD57 scores on the third page, which is called page 45. The average score is the number before the +- in the third column.
Amanda
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posted
Thanks for bringing this up.
Aside from the Stricker study, I have never seen ANY other research that compares different illnesses effects CD 57 counts.
I read where people say, "my LLMD said this", or "it is known that other things lower CD57". But I want to see the study.
I know there are lyme patients with high CD57s, so I would not rely only on that for treatment.
But I have not seen any data showing other illness have the capability to lower the CD 57 to the extent that lyme can
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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gemofnj
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posted
This link doesnt provide an answer, but it could have information leading to the possibilities of other viruses that could/may lower it.
posted
Not sure these are what you are looking for, but there are references to start with:)
Stricker RB, Winger EE. Decreased CD57 lymphocyte subset in patients with chronic Lyme disease. Immunol Lett. 2001 Feb 1;76(1):43-8. ============================================ The CD-57 Striker Panel Test (Dr. Rafael Stricker San Francisco) http://www.anapsid.org/lyme/strickerpanel.html ================================
Following criteria established by research: Immunol Lett. 2001 Feb 1;76(1):43-8. PMID: 11222912 [PubMed - indexed for MEDLINE]
CD57 Test Interpretations:
Low CD57 occurs in chronic Lyme or when the disease has been active for over 1 year.
A review of the affects of other infections, only Lyme spirochetes lowers the CD57.
The count reflects the degree of infection.
While not an exclusive diagnostic lyme test, it is used as a marker for Lyme being active.
The Lyme Disease Solution" by Dr. Kenneth Singleton, pg. 239 about CD57:
"The CD57 cell test is also useful clinically, but primarily for following progress during Lyme treatment. The CD57 cell is a white blood cell of the lymphocyte classification that functions as a "natural killer cell" (NK cell)...For the sake of our discussion at this time, it is important to realize three things about the CD57 cells:
a) when they are in a healthy normal range (125-250) that is usually a sign that Lyme is under reasonably good control,
b) when very low (less than 20) that is generally a sign of poor control of Lyme, and
c) when, in addition to antibiotics, certain natural and/or non-toxic therapies (such as cat's claw, low dose naltrexone, and others) are added, often the CD57 counts rise, reflecting improvement in immune function directed against Lyme organisms."
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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quote:"The CD57 cell test is also useful clinically, but primarily for following progress during Lyme treatment. The CD57 cell is a white blood cell of the lymphocyte classification that functions as a "natural killer cell" (NK cell)...For the sake of our discussion at this time, it is important to realize three things about the CD57 cells:
a) when they are in a healthy normal range (125-250) that is usually a sign that Lyme is under reasonably good control,
b) when very low (less than 20) that is generally a sign of poor control of Lyme, and
c) when, in addition to antibiotics, certain natural and/or non-toxic therapies (such as cat's claw, low dose naltrexone, and others) are added, often the CD57 counts rise, reflecting improvement in immune function directed against Lyme organisms."
This isn't true at all. CD57 test can't be used to diagnosis or show treatment progress of lyme.
Posts: 649 | From United States | Registered: Dec 2003
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posted
Where do you get this information that "this isn't true at all".
I think this is up for discussion in the world of LLMDs.
If you are seronegative for Lyme, but clinically dx, it gives you something solid for your file.
Posts: 564 | From Tick Hell | Registered: Oct 2008
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posted
My LLMD was very excited when the CD57 test came out. He thought we finally have something to gauge the treatment progress. After a few years of research on his patients he concluded that the cd57 score doesn't coincide with how they are feeling or doing. He said his worst patients who were practically bedridden had scores like 240 and others that felt great had scores of 15. He doesn't he use the test anymore.
Posts: 649 | From United States | Registered: Dec 2003
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disturbedme
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posted
Cat's claw never helped raise my CD57 score.... wish it had though. My CD57 is 9... I will be having it tested again soon to see what it is (after not having it tested for nearly a year).
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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1Bitten2XShy
Unregistered
posted
Great Question.
When I was at my sickest my CD57 was 360! Now, after being in treatment for 2 years, just got a new CD57 back today and it is 205!
Hoosiers51
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posted
I have heard that certain viruses like EBV and gamma strep can RAISE the CD57.
I have no references, because I heard this from someone who said they learned it at that recent Lyme conference in Missouri.
So, I wonder if the LLMD's that are finding high scores in their sickest patients are just not aware that perhaps their patients are suffering more from the viruses many people with Lyme get (if you believe this conference stuff), than the Lyme itself, at the time of the blood draw.
Posts: 4590 | From Midwest | Registered: Jun 2008
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1Bitten2XShy
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posted
I had/have both high EBV and HHV6 viruses.
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Hoosiers51
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posted
I am can only repeat what I have "heard"....so I don't know if this is a "for sure" thing, but it's interesting to say the least.
This doesn't mean you don't have active Lyme, but maybe the EBV is skewing your results.
It is sort of a tricky guessing game to play, so I would go by what meds you respond favorably to (whether they be Lyme meds, anti-virals, etc).
Have you ever taken 3 Valtrex per day? (that is the dose some LLMD's recommend for viruses) Did that help?
I am currently waiting in my virus testing. Should have it in a couple weeks. My CD57 is really low though. But if I have viruses, I want to treat them too.
Posts: 4590 | From Midwest | Registered: Jun 2008
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randibear
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posted
hmmm, this is interesting. i just had an appt with my llmd and he said that if in april, i'm still doing good and my cd57 is 200 or more, he's going to recommend i stop treatment.
i feel pretty good right now except for that dang tinnitus and facial twitching.
i'm beginning to wonder about any test for lyme.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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1Bitten2XShy
Unregistered
posted
My LLMD just put me on 1500 MG Valtrex daily. I am starting it (I think) this Sunday, as I am leaving for a long weekend and just in case do not want to feel any worse than I already do!
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posted
My LLMD recently ran a new test on me to check for systemic inflammation levels: C4A. Despite being well for nearly 2 years after treatment, my inflammation levels are double what they should be. There are multiple potential causes, including residual Lyme, the inflammation in my shoulder (unknown cause right now), residual intestinal inflammation from Candida, and mold allergies - which I do have and which is still present in my home).
We also noted that my CD-57 levels have been all over the place. 74 when I initially presented while very sick, down to the high-40s while under treatment, up to 70 last fall, down to 59 now. 70 and 59 were when I was feeling fine, well after treatment end; no symptoms as far as I know.
He did say that the CD-57 cells are attracted to inflammation in the tissues, and therefore don't show up on a blood test. so it's entirely plausible that once we figure out and fix the inflammation issues, the CD-57 score may well rise up considerably.
Irregardless, he's switched me to a new supplement to boost CD-57 production even more to be on the safe side...
Posts: 131 | From PA | Registered: Aug 2007
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Hoosiers51
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posted
billclo,
Thanks, so maybe that is why people can show a low score when they are feeling relatively better....the inflammation.
What supplement is he putting you on?
Posts: 4590 | From Midwest | Registered: Jun 2008
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We see the same doc. Do you mind sharing the new supplement? I am currently on Mushroom Immune Defense. Have not had the CD57 repeated yet, as my protocol has been sputtering since the start in December. Posts: 819 | From East Coast | Registered: Apr 2009
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He was saying it has a much higher concentration of the immune-stimulating chemical than either of the 2 products he had me on previously (Cordyceps herb and Epicor).
Posts: 131 | From PA | Registered: Aug 2007
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linky123
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posted
This is the very thing I am confused about and posted yesterday about my son. The llmd had diagnosed him with lyme in Feb. He had a double positive lyme test from Igenex, and CD-57 of 45. He has neuro symptoms, but physically is able to function pretty well. He sleeps a lot. The llmd said at his current activity level, he would be much 'sicker', completely wiped out. So now he thinks his symptoms line up more with bartonella. So now we throw all the test results out the window? He says treat the patient not the lab results, and that they do get false positives. I was wondering if bartonella can drive down CD-57 numbers as well? I had always thought it was specific to lyme. The doc warned us from the beginning that this was very complicated. No kidding. So now we are going to do a challenge with 3 days of high dose antibiotics to see if he gets a herx. He never herxed on 5 weeks of zithromax, although the llmd said zithromax doesn't always cause a herx. We saw absolutely no difference in his condition with the zithromax. I'm praying we don't get the herx, so my son doesn't have to deal with the nightmare of lyme. We really thought he got it from me at birth. I definately do have it, or at least fit all the criteria. I still think my son has it, but am hoping for the best. The doc says bartonella is much easier to treat. Sure is nice to be able to come on this thread and vent to those who understand. One of the most difficult thing about lyme is that it is such a lonely disease. Folks don't understand it. And I guess I can't blame them. We didn't either until it decided to 'pay us a visit.' Hope all of you feel better every day. Take care. Linky
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TadichGrill
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posted
My CD57 score went down with treatment and not up. I have chronic Lyme and high CD57 scores.
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