Just finished at ND he took one look at my years worth of blood test results as well as my live cell microscope tests showing my white cells are all way too high , not just nutraphils but also monocytes and lymphocytes and that I have bacteria on my blood.
All of which has been happening for over a year on my tests and he said you have some major bacterial or parasitic infection no question.
He is leaning towards lyme and doing a full panel of lyme and co infections through igenix. It is being sent off tomorrow
Also has me going tomorrow for cd57 test.
Just wondering though is cd57 a 100% sure fire way of diagnosing lyme or can it show false negatives too?
Also doing a full panel of gut bacteria and parasite tests
Posted by Lymetoo (Member # 743) on :
NOPE
Posted by Maya12 (Member # 36392) on :
It isn't lymetoo? The nd I saw seemed to think it was. Does dr b say it isn't? Uggg these little buggers are so hard to track down
Posted by Summer3 (Member # 35286) on :
The CD57 is not 100% accurate. Some doctors like to use it as part of diagnosis and monitoring treatment progress, and others do not feel it is of vital importance.
A CD57 measures a subset of the immune system known as Natural Killer or NK cells. A normal healthy person without Lyme should have a CD57 of 200 or higher. In some Lyme patients, the number is often under 100 and many doctors believe that only borrelia can lower the CD57.
As far as I know, there is no sure fire way to diagnose Lyme. It is still a clinical diagnosis with tests used as supportive evidence not sole evidence of infection.
In my opinion, it's useful mainly for people who aren't testing positive for Lyme or would like further validation of a Bb infection. Some doctors also test it periodically throughout treatment to determine if a specific protocol is working.
A low number is synonymous with Lyme but a normal or high number does not necessarily mean that you do not have Lyme. Certain factors like co-infections can raise the number even in the presence of Lyme.
Posted by Maya12 (Member # 36392) on :
What is cd 57?
And I take it you can get false negatives with it too and that lyme can be present but cd57 negative
Posted by Lymetoo (Member # 743) on :
If it's low it may support a lyme diagnosis. Dr B's guidelines are at the top of this page.
It won't be "negative" .. just low or high.
Posted by aperture (Member # 34822) on :
No way. Mine is 88 and I feel like I'm gonna collapse and die on a daily basis.
Posted by agmorgan (Member # 36230) on :
The results of the first time I was tested or cd57 came back today. Don't know the exact number but LLMD said it was quite low. My Igenex and western blot lyme tests were both negative. Who the heck knows.
Posted by ChuckG (Member # 19093) on :
quote:So 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. Burrascano 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 (sic) hold up to careful scrutiny.
Posted by Keebler (Member # 12673) on :
- Q: Is cd 57 a sure fire and always accurate way of diagnosing lyme?
Absolutely not.
The CD57 is NOT a lyme test but a test of how your body is working, so to speak, on just one level, though that can be a hint.
There is no positive or negative to be had on this test as it does not test for the presence of infection of any kind.
If you are on an limited budget, save your money on that CD57. If you have plenty of money, it can be somewhat helpful but not necessarily so.
When first used, it was hopeful to divulge information. But, as time has gone by, it's use has been less helpful.
Diagnosis techniques are improving.
Igenex is an excellent lab and their Borrelia IgG & IgM Western Blots and coinfections are good tests.
However, the very best test and most accurate now for lyme is from Advanced Labs (but it's more expensive). If you have the money, I would do this test instead of Igenex for lyme.
Diagnosing Lyme Disease (&/or whatever else is going on)
---------
Backing up. If you EVER had a bulls eye rash, you do not need lyme tests. Oh, they would help but the coinfections are then where I would start with testing.
It's not clear, though that the rashes you describe here are classic lyme but still list those on your diagnosis work page.
I see you posted in another thread on March 4:
" . . . have had small circular rashes sometimes it would come up in a rash with a blister. . . I have never had the bulls eye rash though. . . ." (end quote by Maya) -
Posted by tiffagoo (Member # 23750) on :
My LLMD has never done a CD 57 test.....
Posted by manybites (Member # 33750) on :
My Cd 57 was 110 and I was near death and with FULLY blown LYME , Bart and babesia( fry bug as well) .ALL of them .
Posted by 'Kete-tracker (Member # 17189) on :
It's not a sure-fire way of determining a Lyme disease diagnosis... No. Nothing is. Not yet anyhow. It is a useful indicator for many to show active borrelia infection, but is still considered experimental, even by many Lyme doctors.
It's best used as a way see how well a particular treatment may be getting the Lyme under control... or not. A count is taken every couple/ few months to observe any CHANGE in the #.
By the time most late-stage Lyme victims have their first count taken, thy *already have* a supressed count so it's difficult to gage how "suppressed" it IS!
The Western blots for Lyme borrelia, interpreted by a knowledgable doc, are still the best way to tell if a symptomatic individual likely IS suffering from Lyme.
I like the test and think it is valuable and should be part of trying to make a diagnosis. But, nothing in this world is sure-fire, unfortunately.
Posted by lymegal23 (Member # 28573) on :
Well I do think its useful in supporting the diagnosis considering lyme is really the only thing the can lower it. For the most part.
Posted by joahsark (Member # 20598) on :
Mine has been way over a hundred and I'm very seriously ill. So nope.
Posted by 'Kete-tracker (Member # 17189) on :
Lymegal, I'd agree IF there was a magical way to accurately determine what one's CD-57 count was just PRIOR to being infected with Lyme. Then the "drop", if any, would be an interpretable percentage. But there isn't, unfortunately.
And a healthy person's count Can vary from less than 100 to several hundred, just as the red & smaller white blood cell counts vary from one individual to another. My red count has Always been at the bottom of the acceptable range, but I never suffered from any symptoms of anemia.
Posted by Catgirl (Member # 31149) on :
It's just a baseline measurement, nothing more. Mine is almost 300 (up from 6 mos ago) and I am still sick and loaded with co infections.
Kete-tracker, my red count is still low (has been all along).
Posted by randibear (Member # 11290) on :
ha..mine is 56!!!!
Posted by Tricky Tickey (Member # 26546) on :
Interesting observation here. Some say that that a "normal healthy person" should have a count of 200 or more.
Then we read that it's normal from 100 and up. Then my LLMD says 40-80 is bad. So it's like a see-saw, nobody really can tell.
By the way, when I was sick (2 months after infection) my count was 119 and my WB were negative with an IND band weak.
Recently, I had another CD57 done. It read 103, lower than when I was actually sick.
Posted by 'Kete-tracker (Member # 17189) on :
IT'S NOT THE SPECIFIC NUMBER! I believe it's how YOUR # CHANGES, over a period of time- usually a few MONTHS- that indicates ANYthing.
Dr. B's says once the Lyme infection is "controlled" then the CD-57 count will "jump" [up]. (pg. 8, last paragraph)
Tricky- you only gave 2 points on a big curve. Your CD-57# may very well have been less than 103 some weeks before your recent test.
MY count is now over 100 but far less than 200. I haven't relapsed though. {knock.on.wood}
Posted by Catgirl (Member # 31149) on :
Kete's right. It's just a number.
Burrascano said somewhere (Under Our Skin maybe?) that some of the sickest patients have high CD-57 numbers. So it doesn't mean a whole lot. It's just used to measure the patient's progress (how high or low the number is doesn't really mean much, other than a benchmark).
Posted by SouthPaw (Member # 35229) on :
My doctor suggested CD57 can be used to "very loosely" estimate how long a person has been infected.
She admitted numbers vary with different patients, but typically didn't expect CD57 to be less than 60 for an infection less than 6 months old. She said once it gets down to around 50-53 it's a good indication the infection is more than a year old.
She didn't speak in absolutes and was very clear there's no way to pin down exactly how long somebody's been infected. I've been treated for a variety of medical conditions that could potentially be attributed to Lyme for over a decade but didn't get so sick I had to be hospitalized till June 2011. She used it in trying to determine if my infection was new or a reinfection.
I just see it as my number is low (53) and I'm finally being treated by an LLMD, so not going to argue for/against the usefulness of the test. It appears to be one of several tools doctors have in making a diagnosis and so far the only absolute test (from what I've read) seems to be the bullseye rash. Mine was bigger than a grapefruit. I'm just happy I'm finally being treated.
Thanks for sharing, it's hard to know what "is" and what "isn't" sometimes.
Posted by koo (Member # 30462) on :
Good points Kete and Southpaw. I've had Lyme for 40 years and the CD57 was finally tested after 7-8 months of ABX....it was 19, then 22 a couple of months later. At the one year mark it is 35. Apparently this is going to be a long haul.
There is a woman in our group whose children have congenital Lyme. When their CD57 was checked, it was ZERO.
So I think overall, in some patients it is a very useful benchmark, in others unfortunately not so much.
Posted by Lymebulldog (Member # 35068) on :
I believe it will be useful to me. There is lots of evidence to suggest that I have been sick for over 25 years, but, I became severely ill some eight years ago. I was correctly diagnosed only in 2010, and my CD57 was only checked well after a year into treatment. It was 20 (twenty).
Sadly enough, at the time that the CD57 was measured, I could tell that I had already peeled off quite a bit of disease. I can't imagine what that number would have been back in '04. Likely closer to 0, as the children of your acquaintance, koo.
I am looking forward to the next time that my LLMD sees it fit to re-measure my CD57. I only hope for marked improvement!
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