The CD 57 is a tool for Lyme. Yours is as low as mine. Recently, a great article was written on this test and how accurate it is by Dr B. if you google it, that article should come up.
Sorry but at least you know and can start long term abx (antibiotic) treatment.
My CD57 was in the very much normal range. I was sicker than a dog.
A friend's CD57 was almost zero and felt fine except for a few minor symptoms.
The same thing has shown up for many others.
It can't be used as a 'direct' predictor for Lyme but will perhaps turn out to be a useful set of data in the future.
"One thing that probably needs to be said is that these tests, while they may be useful in supporting or adding another layer of data to the picture of immune dysfunction, are not definitively diagnostic of anything.
The tests listed above may or may not be useful to the patient and the ordering physician in looking into other areas of supportive treatment. If one's insurance carrier or Medicare pays, great. If not, the patient has to decide whether having the panel done is going to be interesting or useful enough (for example, in helping to support their claim of being too sick to work; in finding out about or tracking NK cell counts, etc.) to pay for the testing themselves.
If money is tight, as it is for most of us, then, since this is not a diagnostic test panel, don't have it done if what you are looking for is a diagnosis or confirmation of a different diagnostic test."
Another thread here shows a member who has the same feeling about the CD57.
All the Lyme forums will show the same----- many who feel it shows the status of their disease because the numbers actually matched how they were feeling and many who feel just the opposite.
It's almost like a coin toss.
@ephedra---- the low CD57 won't be data that any doctor will use ALONE as diagnostic and a reason to start abx. You'll need a lab test that show positive---- antibodies, pcr etc.
Please don't take just my word for this. Here are just a few comments from other sources:
Dr. S said at the ILADS 2010 Conference
" CD57 may be affected by Borrelia, Chlamydia pneumoniae, and Tuberculosis"
"CD57 can tell us the quantity of the cells but the issue may be the quality or whether or not the cells can function optimally."
Dr B. said--- same conference:
"CD57 suppression may occur in XMRV as well as in Borrelia. (Editor's Note: There was also talk at this event of Chlamydia pneumoniae causing CD57 depression as well as a discussion of CD57 going down when one is in the midst of a Herxheimer or die-off reaction. Thus, it seems that CD57 may not be as specific for Borrelia as may have been previously believed."
"...I have been ordering this test for years. Thousands. Unfortunately, I am left with the conclusion that it has been of very little help to my patients. I have seen no correlation between CD57 and disease activity. Patients in clinical remission may have very low levels and patients with end stage tertiary Lyme disease may have very high levels. Individual immune responses are difficult to predict.
Dr. B has suggested that the CD57 test might be an inexpensive way to screen for Lyme disease. I do not agree. Physicians may order CD57 levels because they are looking for evidence to support the diagnosis. I do not think this approach will not hold up to careful scrutiny. Many patients unfortunately are getting the awful 13 band test performed at "mill labs."Patients don't want to spend the money to get a decent Lyme test....
...in my opinion and experience, this marker has not been clinically useful."
Sorry, but I disagree. The father of Lyme, Burascano just wrote a big article on it. In the majority of cases he says it is accurate. He says also do C4a.
In my case and everyone else I know with Lyme, its been a good predictor.
That doesn't mean there aren't exceptions to every rule but overall, it is a good test.
I had a negative LabCorp western blot, but we all know that's less than perfect. I'm glad something showed, so at least there will be some looking into. I'm sure different Drs believe different things too. I just think there is more to this! I began oral antibiotics right before the test, just to see how I'd respond.... Well, I can't say I feel any different. I know the IGenex would probably be the best, but I don't necessarily want a false positive either. It seems everyone test positive through them, doesn't it?
I had a sed rate that registered at 2 mm/hr. It's within normal range, but does this seem a little odd?
" It seems everyone test positive through them, doesn't it?"
Not at all! I'm not sure where you got that information but it's wrong. :) It might have been a CDC or IDSA site that was blowing smoke about how 'bad Igenex is. I never received a positive WB for Lyme through Igenex, just IND or neg.
"I had a sed rate that registered at 2 mm/hr. It's within normal range, but does this seem a little odd? "
Nope---- although the sed rate is supposed to measure inflammation my sed rate was always normal. Not just me---- many other. Those that did get a sed rate out of range were 'lucky' since then a doctor might take them seriously.
No, I have never heard of a false positive with IgeneX. I had a false negative with my first Babesia test there..
Several months later it came back positive. Luckily my LLMD and many that I have heard about will treat based on symptoms because it sometimes does takes time to sometimes get a positive result. It took my friend 6 tries to get a positive.
The sed rate sounds kind of low but not being medically trained, I can't really say much except from my own experience. By the time I got very sick, most all my blood tests including sed rate were in the abnormal range.
I was a case where my CD57 value before treatment was in the normal range (around 150, I don't recall the units but I believe them to be consistent with the values others are reporting here.)
After a couple of years of treatment, and measurable gains in how I felt, my CD57 was dramatically lower, in the mid 30's.
My LLMD said that in some cases it was useful for tracking progress with treatment, but not in all.
I also had a negative (by CDC standards) western blot through Igenex.
Finally, my sed rate was measured to be high on several occasions, I think up in to the 40's and 50's (mm/hr). My c-reactive protein, another inflammation marker, also often tested high.
So, I had good CD57, a negative western blot through Igenex, and an out-of-range high SED rate. My diagnosis of Lyme and Bart. was made mostly on clinical evidence, and I greatly improved with antibiotic treatment.
In the same vein as some other recent posts here, I can say that I've never been 100% convinced of what was making me sick, but it best fits Lyme and co-infections. My LLMD used to tell me that he uses "Lyme" to encompass a number of conditions, and I tend to agree with that perspective since it seems no two cases are the same.
As with any decision, deciding whether or not to pursue antibiotic treatment with an LLMD can be approached with a risk/benefit analysis. In my case, despite the lack of firm test results or even my own belief that I had Lyme, taking oral antibiotics was low risk. The potential benefit of treating and curing my condition was of course all positive. No other doctors with whom I consulted offered any treatment beyond some symptom control. Also weighing in for me was that my illness took hold in my late 20's, so getting sick was also jeopardizing my hopes and goals for a career. So for me, pursuing treatment for Lyme came out as an easy choice to make, even though a concrete diagnosis escaped me.
Your mileage may vary, but pursuing Lyme treatment with an LLMD, despite a lack of firm tests, helped me to recover from an illness that no other doctor could diagnose or treat.
I said that "it SEEMS everyone test positive through them" because I haven't heard of anyone testing negative through IGenex. Seems- get the impression. So then I followed that statement by asking "doesn't it?" For your input.
I'm not putting much faith in this CD57 test.... My numbers just aren't adding up. Over 900 for B12, geez- and that was fasting for over 12 hours.
I'm under the impression that sed rate should be higher in females, myself included. So that's why I thought it seemed a little odd.
I'm on oral antibiotics now, so I'll just have to wait and see.
Thank you, ephedra, for clearing that up. Semantics are a b**ch on the Internet, aren't they? (grin)
So---- now you've heard that many people get a negative even through Igenex, me being just one of them, and yet still have Lyme disease. There are dozens of reasons for that happening, but you have probably already read them.
Ephedra----- I'm sorry for aiding and abetting in the highjacking of your thread. It was unintentional and just 'sorta happened'.
So perhaps the last poster would start a new thread and the confusion can be cleared up there.
To get this back on track:
Your OP asked:
:All of my labs are normal except for this CD57 test, which clocked in at a 5. Is this diagnostic for chronic Lyme, or are there other potential causes for a low CD57? "
I answered those questions. (No, the CD57 is not diagnostic for chronic Lyme if you meant can it be used like a lab test for antibodies etc to allow treatment by antibiotics.)
Other's disagreed or agreed.
Other potential causes for a low CD57.
Two were mentioned:
Chlamydia pneumoniae and Tuberculosis
(I'm sure there are more but haven't taken the time to research it.)
And Dr B. said in 2010:
"Thus, it seems that CD57 may not be as specific for Borrelia as may have been previously believed" (which he stated in his earlier Guidelines) but didn't go into any detail that I've read.
There's no fault assigned to Dr. B's thoughts about the CD57 being specific to Lyme. That's how science works. Hypotheses and refuting those hypotheses. It's always a work in progress.
How we must carefully word everything in a post. Everyone has their own opinions and I don't doubt the CD57 in some cases. My case is just complex. I was basically on a chemotherapy drug not too long ago for acne (before Lyme was even considered). I thought I could take a small enough dose, and I'd be fine. At the same time, I was on a steroid. So my immune system basically got bombarded with all of this medication. I've always been healthy. I can't remember ever having the flu, I don't smoke, ect. So I'm thinking okay.... perhaps this medication could be a cause for a low CD57. Then add Lyme and maybe Chlamydia pneumoniae to lower it even more.
I'm now looking into the MTHFR gene mutation and this is another complex addition to an already complicated case. Given my family history, I definitely see an opening for this defect. I'll figure it out! But will the Dr even know what I am talking about? I've spent countless hours myself, trying to sort this stuff out.
I don't have faith in Drs. They just don't have the time! And I understand this! That's why I need to know what's going on...
When you were given steroids, it suppressed your immune system, which is how steroids work .... but if you have a bacterial infection (and Lyme is bacterial) when you take the steroids, then suppressing the immune system lets the Lyme bacteria have a huge house party at your expense, and it will make you feel worse. Many docs don't understand much at all about Lyme, and so they don't think about it when prescribing steroids.
I don't know how much selection you have among docs where you are, but my own LLMD happened to be an immunologist by training, and that point of view might be very useful in your particular situation too, because the doc would have that extra background to parse what your reactions have been to the treatments given so far.
The problem here is when I was taking this "synthetic, steroidal antimineralocorticoid" I can't say I felt much worse.... The problem came when I added this chemotherapy drug for acne. I began to feel the effects immediately! However, I attributed it to side effects. But it didn't make a whole lot of sense as I was taking an extremely low dose. Unfortunately, I don't think my LLMD knows much about the circumstances or this particular drug and I'm finding conflicting information.
Sorry if I sound like a fool here, but I can't understand the mechanism of action of Aldactone (Spironolactone). Are all steroids immunosuppressive? Because wikipediA goes on about how it's a mineralocorticoid antagonist and inhibits this and that steroid. Kinda making it sound as if it's a steroid antagonist. I'm not finding anything that suggest any immunosuppressive effects. And it may not even be considered a steroid by some. If I could just get over this confusion, I think I could figure out what happened and why. Maybe it was a combination of both medications. The chemotherapy drug is fat soluble and has half life of 21 hrs, so I suppose it accumulates and takes longer to get rid of. Perhaps if I have this genetic defect, it could be more difficult to get rid of. Does this make sense to anyone?
Mojogal, is there anything that can be done if you have the mutation?
I just did a quick survey of what's at rxlist [dot] com about those meds and also at a few similar sites, and it's about as clear as mud to me ... but I too came away with the impression that the medication may be an antagonist, as you indicate above, but then again I didn't even take organic chemistry, just chem 101, so I can maybe explain the difference between an atom and a molecule but no further.
If your doc is not forthcoming in a way that gives you understanding and comfort about the situation, you might try talking to your pharmacist. They know the chemistry and effects in depth and can be very helpful, depending on how good they are at such conversations ... some just aren't people-oriented, but a surprising number of them are. I would tell the pharmacist I am unclear on the way the medication is supposed to act, and tell him/her what you've been diagnosed with, and would they please explain to you how that med functions, given your diagnosis, and then work into the conversation your specific questions.
You do not in any way "sound like a fool" -- I think you sound very reasonable and wise. If you talk to the pharmacist, take a list of all meds you are taking (and were taking, if you've stopped some) along with the med in question, and ask if there could be a conflict, esp if you have the particular genetic variation that you've been told you do. Tell the pharmacist you are just trying to understand and that you know they can't give medical advise -- that may help him/her open up a little.
If you are still concerned after that effort, consider changing docs. That can be done adroitly, by quietly finding the new one, getting an initial appointment with the new one, and tell him/her your concerns and confusions that have brought you to them and you need to understand, and if they are willing to speak with you at that level, you would like to be treated by them.
Then if it's a fit, cut the other doc loose -- and you don't even have to see the other doc or talk to him or her ... your new doc can get the records transferred, and you don't have to do anything but sign a release the new doc prepares, if even that is required for the record transfer -- a phone call from new doc's office to old doc's office might do fine. (State laws and local practices may vary.)
Again, I think your approach is sensible and careful, and you deserve to be comfortable with what is going on. Just like everybody you know may like a certain restaurant, but you don't ... it doesn't mean any one of you is wrong -- it's just not a fit.
And PS I've been through bad times with bad docs and with good docs, and that's where I learned to keep moving till I find a good and compatible doc. The bad ones are only human too, and sometimes they just don't know or don't understand.
Okay, enough from me. Let us know what you do and how it goes, and if we can help. Best wishes to you --
Yes, genetic genie explains what you can do depending on which mutation you have. 23andme does other mutations as well. I was shocked to see how many I have.
It requires further blood tests to see if you really have what they say you could have from it. I haven't done my blood tests yet but will soon.
If they come back positive, there are medications to take.
" I was basically on a chemotherapy drug not too long ago for acne (before Lyme was even considered). I thought I could take a small enough dose, and I'd be fine. At the same time, I was on a steroid. So my immune system basically got bombarded with all of this medication."
"The problem here is when I was taking this "synthetic, steroidal antimineralocorticoid" I can't say I felt much worse.... The problem came when I added this chemotherapy drug for acne. "
Could you clarify something for me? Your first sentence seems to indicate that you were on a 'chemotherapy drug' for acne. Was that spironolactone? If not, would you mind sharing the name of that drug with us?
Your second sentence said you were taking spironolactone (synthetic, steroidal antimineralocorticoid) and then you added a 'chemotherapy drug'.
Spironolactone is given for acne in many cases. So were you given two different meds for acne?
I'm just trying to understand what was given and when. Choose to ignore my questions, if you wish.
BTW spironolactone is noted as being an immunosuppressant in sarcoidosis. I haven't followed that thread to find out if it's ONLY disease ----seems that if it's in one, it might be in others. But I'm not a doctor.
Wow, thanks Jackie!! It helps to have another similar point of view! I have to dig deep for some of the information I come up with, so I wouldn't expect a Dr or pharmacist to know. Some things are well known and then there are things that are not, but that doesn't mean a problem doesn't exist. I could ask a pharmacist if Spiro is immunosuppressive, and he'd most likely say no. Maybe I will, just to see. The pharmacists I have came accross don't seem people oriented and I'm not either, so it doesn't make for a decent conversation- especially with my Lyme related issues. So I'll try to ask simple questions.
And no cave Spiro is not a chemotherapy drug, it was Isotretinoin (Accutane). It's actually a retinoid, but it's sometimes used for chemotherapy. I added an extremely low, undocumented dose of Isotretinoin in addition to 100mgs Spiro that I had already been taking for several months. Yes, they were both basically for acne. I'm my own Dr, so when something goes wrong I can only blame myself. I only got a Dr involved because Lyme/co infections are complicated enough.
I actually found a thread of Drs prescribing these two medications together. It wasn't one of those things that was easy to find. And it didn't mention much. I couldn't find any straightforward interactions, although I did find an interaction between Isotretinoin and Corticosteroid medicines. Would you all agree that Spiro doesn't seem to fit that category?
Yes cave, I did see where it noted Spiro as being an immunosuppressant in sarcoidosis. That's what may have got me thinking in the first place. I thought the same thing as you! I've just been trying so hard to find more evidence and I'm not having much luck. I'm not even finding evidence to suggest Isotretinoin is immunosuppressive, I guess I just assumed that it was. I found one study that suggest that Spiro was immunosuppressive in .05% of those in the study. So perhaps it is, but I was okay on Spiro alone. My labs right after both medications didn't indicate any of the abnormalities sometimes found with either of those medications. Liver, sodium, potassium, triglycerides, wbc, rbc, ect... everything was fine.
I haven't talked to the Dr yet about my CD57 count, so I'm not sure what to expect. IDK if these medications together could lower my CD57 that low or not. I can't say I was feeling the best when I began the spiro.
I just looked up 'Spiro' on the "rxlist" website, and the first thing up was a list of 50 (I counted them) possible side effects of that medication, along with shorter lists of other issues.
Then I googled -- spironolactone pharmacological action -- and got some very interesting stuff. Even drugs [dot] com, which can put me to sleep by being too elementary, has quite a write up on Spiro. It looks like the docs know a few things that Spiro does and are unclear on what else it can do. It may be that the med is so new and has so many effects in ways known and unknown that the docs just don't know what to anticipate, esp in the face of a complex infection like Lyme, which has its own bag of tricks. If you could get the ear of a knowledgeable pharmaceutical chemist, you might get quite a tutorial.
When I did the google search, I started typing in the search box 'spironolactone pharma...' and when I got just that far, about ten possible (and interesting) search terms came up that start with those words/letters. If you know any pharmceutical-type chemists who are familiar with Spiro, I bet you could get quite the tutorial. To mix that with the mess that is Lyme -- well, exciting things may happen.
There's an interesting write up at -- drugs [dot] com / pro / spironolactone [dot] html ---------
My best guess is that the scientific types are still figuring it out. Sorry not to be of more help ... keep us posted!
Oh and about sarcoidosis ... that's one strange muther of an illness, isn't it. I know someone who was diagnosed with it about 25-30 years ago, but I never had the feeling the docs had a handle on that situation ... kind of like Lyme is now. And I'm not so sure they've actually got sarcoid figured out even yet, either, tho I don't follow the literature.
The good news for you is that your brain is still functioning. Sometimes Lyme is not so kind to mental function for a while ... been there. You sound focussed and alert, which is all to the good. Let us know how we can help ... we've been through the ups and downs and sideways maneuvers of Lyme, and if we have any data useful to you, let us know. It's how we inflict revenge on the bacteria.
Oh, and you might think about what type of MD would be best able to unravel what's going on in your body. Some docs are more able to stretch into areas they don't commonly practice in, and that is a good quality in a Lyme doc, because of the diverse and protean symptoms that can arise. It's not for nothing that Lyme is first cousin to syphilis. My own LLMD was an immunologist by training, and that gave the doc a viewpoint very helpful in strategizing about what Lyme is up to in the human body.
It takes medication to assist in my brain function. I'd probably be a lost soul without it. It also takes a lot of time for the thought process. I'd be completely on my own if it wasn't for the net and this community- so very helpful. Yeah I wish I knew a pharmaceutical chemist that could break things down. Unfortunately, I can't rely on DRs. So far, it seems I know more than they do. They have to look things up too. They just don't have the time to go in deep like I do. Then when labs come back normal, what can they say? They don't know how I feel, they just know what I tell them. There are flaws in labs, like Dr B says "clinical hypothyroidism can result from receptor blockade and thus hypothyroidism can exist despite normal serum hormone levels." Drs would never think of that! And what about my b12 and folate levels? That's not in active form. But I'm not trying to knock Drs! Way too many people go to Drs for nonsense anymore, so when there's no proof what can they do?
All the more reason to find a Lyme specialist -- clueless docs tend to stay clueless, in my experience. Lyme is unlike any other ailment I know in that way, except maybe the early years of AIDS. Unlike those AIDS patients, Lymies can just muddle along for years not getting better and not necessarily getting worse, and the docs just shrug. All the more reason to take matters into your own hands and find an LLMD, the sooner the better. Don't wait.
There seems to be some controversy (or more accurately, some unknown aspects) surrounding the CD57 test. Some LLMDs use it, I think to gather data to compare to the tested patient's progress -- meaning, with 'x' treatment, the CD57 numbers went [higher][lower][stayed the same], and if that result is gotten from a reasonable bunch of people, then it may indicate that CD57 is useful in tracking the rise and fall of a Lyme infection.
I don't know that the use of CD57 has yet proven itself entirely useful, but some Lyme docs use it as an extra bit of data. Lyme treatment is still developing, so these aren't like + or - pregnancy tests.
My fiancée has been hospitalized 3 months with MRSA. His doctor checks his CD-57 daily as a guide for how he is doing. He is a Johns Hopkins specialist who believes in it. He says your number has to be 55 if he wants to leave (MRSA numbers down too). Mine is 8 and I feel like crap but have heard others that are low feeling good so yes its a controversy.
This thread is so old, but it's all good. I have a lot more understanding of the disease than I did way back then.
I asked my physician, if the CD57 count can be used as a guide to progress. I already knew, thanks to cave76 beating in in my brain. But I just thought I would ask anyhow. And the response was " the CD57 count does not always make sense in my opinion, I have seen patients that are doing well and their numbers are low". So there you have it!!
I am still hopeful that I will be an odd exception. Everything else about my case is odd, so I would not be surprised. Because I am not very respondent to oral antibiotics. Doesn't mean they are not working, it may just mean I need more time. Or it could mean that orals are just not going to be effective in my unique situation.
Mojogal, are you saying that MRSA can reduce the CD57 count also? Or does your fiancée have TBIs?
By the way jazzmatazz99, after six months of antibiotics and a CD57 of 8 now - I tested positive on the IGenex western blot. Was the western blot through IGenex indeterminate on you or was it another test? There must be something there to make it test indeterminate.
"I asked my physician, if the CD57 count can be used as a guide to progress. I already knew, thanks to cave76 beating in in my brain. But I just thought I would ask anyhow. And the response was " the CD57 count does not always make sense in my opinion, I have seen "
LOL---- I'm gonna start charging for my information----- but only for the info that I can back up with science, which is usually what I offer.
Ephedra also said:
" Because I am not very respondent to oral antibiotics. Doesn't mean they are not working, it may just mean I need more time. Or it could mean that orals are just not going to be effective in my unique situation."
It just may be that you haven't had the oral abx that YOUR body wants.
It just may be that your Bb are really really adept at shape-shifting.
It just may be that you're wanting this done and dusted a lot sooner than others get relief. (Perfectly understandable!)
It may be that your case wants bicillin injections or IV. Neither one of them is always a slam dunk-----but they have helped a lot of people. Bicillin injections would avoid that dread and awful catheter 'hanging out of your arm', LOL Neiner neiner.
Just think of the CD57 level as a piece of circumstantial evidence. Perfectly healthy people are highly unlikely to have low levels. It's not a marker of how sick a Lyme patient is, either. There's still so much that we don't know about the immune system, but a low level of CD57 usually means something is going on in the body that is reducing the level of these particular cells below "normal."
My doc didn't test my CD57 until over a year and a half into treatment when I had a bad symptom flare and we were trying to figure out what was going on. I was not in good shape, at about 25% of normal capacity, and yet my CD57 was right at "normal." (We later concluded that Bartonella was responsible for most of my symptoms at that point.)
I ecently had a C4a Test done it came back with a flag 5237 H CD 57 came back low 20 I have seen a llmd and he has me on antibiotics, I must say I do feel better still have vision jitters and low back pain how long before you notice a real change?
Your symptoms may be entirely different from others' symptoms.
Your body and how it handles infection is definitely different from others'.
The common wisdom is---- don't try to compare your progress with anyone else's progress. (grin) It sounds as if you are making progress and with continuing treatment you will probably get back to near normal at some (hopefully soon) point.
Unlike most bacterial infections we humans deal with (earaches, whatever), Lyme plays by different rules. Lyme bacteria have particularly slow reproductive cycles, and it is when reproducing that bacteria are most susceptible to being killed .... so it takes longer than an earache to fix.
Lyme also messes with the immune system, suppressing its normal activity in killing an infection. Again, requires longer than other, garden-variety infections to stamp out.
Lyme has other tricks that it takes a while for even a superb doc to detect and deal with -- so patience is the watch word. But I can tell you: it's worth the wait.
Hang on, and keep us posted. We've all been where you are.
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