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CD57 score of 64? High C4a, too? What?
My CD57 came back at 64 with a normal range of (60-360). Could anyone shed some light on what a *lower* score that is still in "normal" range could mean? I also have a C4a score of 19,666. Is the C4a something that is just for mold exposure or Lyme as well? I'm waiting to call my LLMD and get her to order an IGENex. I took a regular Western Blot and Elisa through a regular lab ordered by my PCP and they both came back negative (for all bands). Thoughts? Thank you! I hope everyone is doing well these days!
My CD-57 results were a 59 even though the range stated normal starts at 60. My doc said a healthy person is about 200 so if that's any indication. This isn't the only indicator of Lyme, but in conjunction with your other results this helps docs determine a Lyme diagnosis. It isn't completely reliable to determine health so as you progress with treatment, your doc should be doing other testing besides just this. Also make sure the tests are for CD-57 NK (natural killer) cells and NOT the CD-57 T cells. Quest Labs doesn't have a reliable CD-57 test BTW so make sure it's LabCorp or one of the other independent labs like Fry or IGenex. Hope this helps!
Buhner protocol is good so she must think you have Lyme. If you go on FB and friend Stephen Buhner, he will, at times when he is not too busy, answer your questions. I have his book on co-infections. Good stuff.
I don't know that there is a clear answer to your question. There are many factors that affect or may affect a correlation between Lyme and CD57, and research continues. When the possible connection between and Lyme and CD57 was first proposed, there was (and still is) additional research and information to be found. Rather than rely on a test that is unclear in its accuracy, other tests and analyses which are likely less murky and more reliable, such as the IGeneX tests.
Thank you all for your responses. Everyone on this forum is so responsive and thoughtful- I really appreciate it. Hopefully my LLMD will order an IGENex test to confirm Lyme. She went ahead and suggested I start on the Buhner protocol but didn't officially say I had Lyme.
I guess I just want to know how common it is to have such a low CD57 number and NOT have Lyme?
I guess I just want to know how common it is to have such a low CD57 number and NOT have Lyme?
In most cases it does follow how you feel but there are those few cases where it doesn't . Frustrating.
Your doc sounds quite thoughtful ... hope you are feeling better as things go along. Glad to see you posting -- !
The way my LLND explained it is my CD57 should go up as my immune system gets stronger, it was 15 now 23. She said the high C4a could be due to inflammation due to lyme or mold. Mine has been hovering around 77,000. She said when both numbers are closer to normal I should be feeling better! But who really knows?
Have you read anywhere the details why CD57 doesn't appear to track with Lyme in the way it was initially thought? I would be interested to know.
My friend has a CD-57 of 411 and he is very sick. So people are not taking as much stock in it however to be honest I still check mine. Labcorp is the best lab for the CD-57. So far mine has followed how I feel. I started with an 8 then up to 48 and I am anxious to see what the next one is.
The c4 A does check for mold and other such toxins. It is my understanding it doesn't check LYME. I am having blood work tomorrow and would like to know for sure too.
The c4 A does check for mold and other such toxins. It is my understanding it doesn't check LYME. I am having blood work tomorrow and would like to know for sure too.
Others may have a different point of view, but it has been my understanding for several years now that the original hopes that CD57 would help track how well a person with Lyme was doing and progressing in treatment. I have not done any serious reading (or much at all) about CD57 since then, but if there had been a breakthrough that CD57 has been rediscovered to be wonderful after all, I think we would have heard about it. There were some posts here recently on this same question, and no one popped up with new and good information that CD57 has suddenly become a good marker as originally hoped.
It's a good question to ask your doc: what is the CD57 test designed to measure; what kinds of data does it give the doc and the patient; and how does it affect your treatment. If there is indeed new data, please share it with us here -- would be interesting to all of us.
About being on the low side but within a normal range means: it's normal, but when viewed in the context of other test results and your symptoms, it still looks pretty low. There is no magic line that one must cross to suddenly change the doc's view: there is far more to medicine than relying on such a close call -- the data has to be taken all together in context with your other tests, your history, and your symptoms. Tests are indicators, not the final word, and the tests can be off at some level for all kinds of reasons. That's where the doc earns his/her paycheck: being able to tell what's really going on.
(If you want to read the summary of the research from ~5 years ago which indicated that CD57 might be a very useful indicator, go to: http://www.ncbi.nlm.nih.gov/pubmed/19140878. It was a promising beginning, but further testing and study indicated that the early hopes were not warranted. That's how research is: something that looks promising can, on further data collection and analysis, end up with different conclusions.)
What the CD57 test is currently used for, I don't know. Your doc can tell you specifically why s/he ran the test and hoped to learn, and also whether any useful data were gleaned. This is the messy part about being on the cutting edge of medicine, as all of us with Lyme are.
-----
Do you know which lab your doc sent your W.blot and ELISA tests to? That can sometimes influence the result to an extent, based on the lab's approach and your doc's view of those approaches.
Some lab results are, in the view of Lyme specialists, interesting but not the last word. Lyme docs often prefer tests run through IGeneX, because it is a wholly different kind of test than the ELISA and W.blot.
======================
(In a nutshell, the IGeneX test looks for Lyme DNA in your blood, which is a direct test -- either the Lyme DNA is there (a positive test result) or it is not (a negative test result). The other, older tests, W.blot/ELISA, use an indirect method of determining whether there is evidence of Lyme in your blood: the test looks for your immune system's reaction to Lyme bacteria.
If there is no reaction from your immune system, the W.blot and ELISA tests are deemed negative ('no Lyme here'); if there is a reaction from your immune system, the test is deemed positive ('you have Lyme'). The flaw in these older tests is that when they were designed and first used, the docs did not yet know that the Lyme bacteria can and do suppress your immune system, so the older tests could say 'No Lyme here' but you really could have a raging Lyme infection.
This is why seeing a Lyme specialist is, from my own experience, so very important. As I've posted here before: when I was so ill with what turned out to be Lyme and babesiosis (a co-infection often carried by the 'Lyme' ticks), I went through 20 MDs before #20 ran the only test she could think of that the other 19 docs had not done: a test for Lyme disease.
The test came back positive, but this doc, who was very nice and highly educated and experienced, told me gently that I 'could not possibly have Lyme' because, she said: 'I have patients with Lyme, and they are all near death.' I knew that was rank stupidity, because my college roommate some years ago had had Lyme, which was at the time a very new disease, and my roomie (trained as a scientist herself) had long ago explained to me about the problems the docs had and continued to have overall in understanding, diagnosing, and treating Lyme.
If it had not been for my roomie all those years before, I would have simply accepted the doc's statement that I absolutely did not have Lyme because I wasn't nearly dead. Thanks to my roomie, I knew better, tho, and took the positive Lyme test results and went straight to Lyme doc, where I was tested (through IGeneX labs) and treated for Lyme and babesia. I remain well now, some eight years later (knock wood).
So that little story and history of mine is an example of the mess the medical community is in. The nonLLMDs don't understand that their ELISA and Western blot tests are good data IF they are positive, but if the tests are negative, it could be because the Lyme bacteria are suppressing your immune system, and it is that data from the immune system that the doc decides whether the patient has Lyme.
So all that is why it's important to have a doc who understands the limitations of ELISA/Western blot tests (if the tests are positive they are accurate; if they are negative, they may well be *wrong*).
Bottom line for you: your ELISA/Wblot tests could be a false negative result, and in your situation, I would find an MD who uses the IGeneX tests in addition to the ELISA/Wblot tests.
It's a good question to ask your doc: what is the CD57 test designed to measure; what kinds of data does it give the doc and the patient; and how does it affect your treatment. If there is indeed new data, please share it with us here -- would be interesting to all of us.
About being on the low side but within a normal range means: it's normal, but when viewed in the context of other test results and your symptoms, it still looks pretty low. There is no magic line that one must cross to suddenly change the doc's view: there is far more to medicine than relying on such a close call -- the data has to be taken all together in context with your other tests, your history, and your symptoms. Tests are indicators, not the final word, and the tests can be off at some level for all kinds of reasons. That's where the doc earns his/her paycheck: being able to tell what's really going on.
(If you want to read the summary of the research from ~5 years ago which indicated that CD57 might be a very useful indicator, go to: http://www.ncbi.nlm.nih.gov/pubmed/19140878. It was a promising beginning, but further testing and study indicated that the early hopes were not warranted. That's how research is: something that looks promising can, on further data collection and analysis, end up with different conclusions.)
What the CD57 test is currently used for, I don't know. Your doc can tell you specifically why s/he ran the test and hoped to learn, and also whether any useful data were gleaned. This is the messy part about being on the cutting edge of medicine, as all of us with Lyme are.
-----
Do you know which lab your doc sent your W.blot and ELISA tests to? That can sometimes influence the result to an extent, based on the lab's approach and your doc's view of those approaches.
Some lab results are, in the view of Lyme specialists, interesting but not the last word. Lyme docs often prefer tests run through IGeneX, because it is a wholly different kind of test than the ELISA and W.blot.
======================
(In a nutshell, the IGeneX test looks for Lyme DNA in your blood, which is a direct test -- either the Lyme DNA is there (a positive test result) or it is not (a negative test result). The other, older tests, W.blot/ELISA, use an indirect method of determining whether there is evidence of Lyme in your blood: the test looks for your immune system's reaction to Lyme bacteria.
If there is no reaction from your immune system, the W.blot and ELISA tests are deemed negative ('no Lyme here'); if there is a reaction from your immune system, the test is deemed positive ('you have Lyme'). The flaw in these older tests is that when they were designed and first used, the docs did not yet know that the Lyme bacteria can and do suppress your immune system, so the older tests could say 'No Lyme here' but you really could have a raging Lyme infection.
This is why seeing a Lyme specialist is, from my own experience, so very important. As I've posted here before: when I was so ill with what turned out to be Lyme and babesiosis (a co-infection often carried by the 'Lyme' ticks), I went through 20 MDs before #20 ran the only test she could think of that the other 19 docs had not done: a test for Lyme disease.
The test came back positive, but this doc, who was very nice and highly educated and experienced, told me gently that I 'could not possibly have Lyme' because, she said: 'I have patients with Lyme, and they are all near death.' I knew that was rank stupidity, because my college roommate some years ago had had Lyme, which was at the time a very new disease, and my roomie (trained as a scientist herself) had long ago explained to me about the problems the docs had and continued to have overall in understanding, diagnosing, and treating Lyme.
If it had not been for my roomie all those years before, I would have simply accepted the doc's statement that I absolutely did not have Lyme because I wasn't nearly dead. Thanks to my roomie, I knew better, tho, and took the positive Lyme test results and went straight to Lyme doc, where I was tested (through IGeneX labs) and treated for Lyme and babesia. I remain well now, some eight years later (knock wood).
So that little story and history of mine is an example of the mess the medical community is in. The nonLLMDs don't understand that their ELISA and Western blot tests are good data IF they are positive, but if the tests are negative, it could be because the Lyme bacteria are suppressing your immune system, and it is that data from the immune system that the doc decides whether the patient has Lyme.
So all that is why it's important to have a doc who understands the limitations of ELISA/Western blot tests (if the tests are positive they are accurate; if they are negative, they may well be *wrong*).
Bottom line for you: your ELISA/Wblot tests could be a false negative result, and in your situation, I would find an MD who uses the IGeneX tests in addition to the ELISA/Wblot tests.
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