posted
I can't seem to find this information online.
By talking to a lab technician here, it seems that the test need blood drawn 4 times for one test, from Mon through Thurs. Am I getting this wrong?
I originally thought you need to be in the lab ONCE any time between Mon. through Thurs. But they say you have to be there for drawing the blood everyday for 4 days.
posted
My...This is one more thing on my list for the incompetancy of our medical professionals.
I spoke to my LLMD and they told me it needs only one blood draw, but it needs to happen between Mon and Thurs. so that blood sample does not sit on the lab over the weekend.
The lab technician apperantly has mis-read the doctor's order. They thought it needs to have blood sample everyday from Mon. through Thurs.
And we are talking about LabCorp people. Can I actually trust their test at all if they don't know what needs to be done?
Posts: 822 | From midwest | Registered: Apr 2009
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
Both of my CD57 tests were only ONE blood draw taken by Labcorp since they invented the test.
My LLMD took it mon, tues or wed. so it didnt sit around.
My results were also identical. 45 at the beginning of lyme, and 45 at the end of treatment.
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
My CD 57 test required only one blood draw. I had it done on a Tuesday, but that's just b/c that was the day I was at my LLMD appointment. I don't think there was a specific day to have it done.
My blood was sent to LabCorp and my result was 100.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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gemoffnj - I thought the normal range will have to be above 200. How come you stopped treatment while it was still at 45?
Posts: 822 | From midwest | Registered: Apr 2009
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posted
I was dianosed with Lyme in Dec. 08. My cd57 numbers were 16. Then they have gone to 30, 40 back to 30 then 76. I just got my results this month and I'm back to 9. I've been on my 3 set of meds and I'm beside myself with these numbers. I'm having fatigue, join pain, migrans, neck pain coming back. Does anyone know what would be the cause of this? I'm so bummed!!!! Any information would be GREATLY appreciated. I'm going to my LLMD tomorrow to discuss.
Thanks!
Posts: 2 | From tustin, ca | Registered: Dec 2008
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
wtl
Your question brings up a good point and a source of contraversy regarding the CD57 test.
We ended treatment because I went approx 3 months symptom free. Which is perplexing because according to Dr. B's guidelines, relapse most likely will occur if your CD57 test is below 60.
My LLMD recommends that your immune system should be back to 120 to be safe.
Currently i am not having any symptoms of lyme or co's, and its been 5 months since my abx treatment ended.
So with that, I have decided that if I relapse I will have to deal with it, but at the moment I really cant justify taking antibiotics without having any symptoms. ( i consider myself extremely fortunate)
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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posted
Contraversy of everything, I am learning that.
Good luck with your health. It sounds promising, regardless what yoru CD57 says.
Speaking of the number going up and down, I am wondering if anyone has any solid information on how accurate this test is.
Posts: 822 | From midwest | Registered: Apr 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
As with every single stupid lab/indicator in this irritating Lyme web, it's supposedly not too accurate. What's new, right?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
fitclub and wtl, For what its worth, my CD57 drops every time I get tested during a herx. Would also like to know why. (definitely only 1 draw on that test)
As for Labcorp...gotta' watch those technician "birdies". I went in for a number of tests recently, one of which was a 1,25 dihydroxy. The techs couldn't find it anywhere in their books,had never heard of it and concluded that it didnt exist.
I had to insist that they call my doctor for verification. They hadn't thought of that. Gr-r-r!
Anyway, i only caught it because I looked at the sheet they make you sign which lists the tests being done and the 1,25 Dihydroxy was not there.
Always, always check that sheet (fyi-they don't like when you do that, but do it anyway) or we well be traipsing back to the lab a second time to fix their blunders.
This has happened to me more than once.
Posts: 677 | From Virginia | Registered: Sep 2002
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posted
imagine2 - yes, that concurs my experience with those bubbleheads at the lab. The one who draws the blood never seems to know much about the test. They can't seem to be able to answer much of any question without calling someone to find the answer. I often wonder how they figured out how much blood they need from me and where they send my sample to. And if they make a mistake, what do they do? Do they just fill in the blank or use someone else's leftover?
I have a feeling that behind the scene work is very sloppy.
Hate to think further and know more.
Posts: 822 | From midwest | Registered: Apr 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I too experienced the blunders with LabCorp idiots. Tried to make me drive 30 miles to come in to re-draw blood because they didn't take enough. I was ****ed to no end. Hire smart people period.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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sutherngrl
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Member # 16270
posted
If the CD57 can change from one day to the next, I don't see the point in using that test to determine anything.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Well, I'm three tests in and my CD-57 never exceeded 60. Some consistency, but I agree with what you said. My ID doc thinks it may be genetic in nature and some patient's numbers never will change. Mine were 54, 54, and 30.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Well my LLMD doesn't even use it, so he must have a good reason.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
That's interesting. But then I think it might be (and designed to be) used to look for patterns and changes, as opposed to reading the numbers specifically for meaning. Isn't that the same for MRI and many other tests?
I never thought one scan of anything is meaningful, but over time the doctor can see the change with treatment so that he can determine how the treatment works on that particular patient.
I am starting to get the sense that no one specific test means a whole lot, but the patterns and movements with the same measurement is what they are looking for. Maybe that's the confusion between good doctors and impatient patients. Posts: 822 | From midwest | Registered: Apr 2009
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posted
wtl, You CRACKED me up with "Bubbleheads filling in the blank with someone else's leftovers." Made my day.
Seek, That's terrible that you had to go back "long distance" to the lab.
My most recent nightmare lab story is: My daughter went in for tests, the tech couldn't find a vein right?
He tries 4 sites and nothing. He then tells her that he's gonna' go for her neck.
Well, she stopped him of course. (dont know where this one was trained, but we reported him.) His manager was mortified and fired him.
Since then, I go in with her for every lab visit. She's an adult but hey,she will always be my "cub". Posts: 677 | From Virginia | Registered: Sep 2002
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posted
imagine2 - glad I can make someone laugh. Posts: 822 | From midwest | Registered: Apr 2009
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
Everyone's "healthy" CD-57 count is different, though most are in the 150 range & above.
The actual count Will go up if you are acutely ill w/ BB, have a low count, are under abx treatment & it's Working to kill off the Lyme.
But how fast it goes up, & to what #, is an individual thing. It's just another test/guide for the LLMD to take into consideration.
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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posted
I am going to settle on the notion that the research of Lyme disease is in its infancy and we still have so much to learn. Nothing is set in concrete and everything is up for debate.
Posts: 822 | From midwest | Registered: Apr 2009
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My wife's result came back and the report says (I have not seen it but told by the doctor who ordered it) she has two numbers: 14 within normal range of 2-17 and then 182 within normal range of 60-360.
She has been tested Lyme positive for both IgeneX and CDC standards. She has severe cognitive symptoms. Her neuropsychiatric test shows that some scores are as low as 9% on the bottom. Her balance is way off. She can hardly walk at all.
But then her SPECT came back normal. And now the CD57. What's going on?
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I would guess she has a viral load also. Get better
with Bb treatment and worry about the other
possibilities later. I asked my LLMD Quote-"What if
I have a virus with Bb?" And he said "It is like
deciding which came first the chicken or the egg" I
am going to treat the chicken first and maybe the eggs will get well too."
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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From what I understand, the bad side to this test is they cant figure out why some folks are seriously ill with normal counts, feel good with low counts, and that it cant really be a measure of whether you are improving.
My LLMD said it measures how much your immune system has been impacted and if the number is LOW then you should be taking lots of immune supplements to help get it back to full speed.
Some doctors feel that if the patient is very sick and their count is in the normal range then coinfections could very well be a factor. Has she been test for co's?
Good luck and best wishes for your wife. Posts: 1127 | From atlantic city, nj | Registered: May 2008
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posted
gemofni - Thanks for the thought and good wishes.
Yes, the test was done by LabCorp. I remember the physician ordered a lavender tube and an orange tube. Maybe that's why there are two sets of numbers?
I bet the number 182 is what everyone is talking about here because they say that the normal range for that one is 60-360.
She had blood taken in the mrning on a Monday so yes, we followed the instruction. Although they had mistaken and asked her to go back on Tuesday for second drawing, I was able to call and talk to LabCorp to discard that second sample.
She has also tested for co-infections, at least some of them. She is confirmed to have Bart and Mycoplasma both by Fly Lab smear and Mayo Clinic serology. I am not sure what else she has tested for.
I bet the co-infection is the most logical explaination. Even she has Lyme, I bet she is more affected from these co-infections.
Posts: 822 | From midwest | Registered: Apr 2009
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
Here's another more recent explanation of the CD 57 test written by Ginger Savely, NP, who is a clinical associate of Dr. Rae Stricker who first introduced the CD 57 test.
Notice that her article states that it's very important that the blood be tested within 12 hours of the time that it is drawn. Otherwise, it degrades very quickly if it must be transported to a remote lab facility for testing.
In other words, some labs are merely "drawing stations" which do not offer full lab testing facilities on site. Ask about this before you agree to have your blood drawn or if your lab results were questionable after you received them back.
Here's a link to an older (2001) abstract about the CD 57 test authored by Dr. Stricker himself.
If you do a search here at Lymenet for CD 57, you will probably find even more information because this topic has been discussed several times in the past.
Posts: 4563 | From TX | Registered: Sep 2002
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It strikes me now that the test was not done within 12 hours. She had her bloow drawn on MOnday morning, and but tuesday noon when I called LabCorp, they told me that the result was almost done. That's more than 12 hours.
I will call them back and see what they said.
Posts: 822 | From midwest | Registered: Apr 2009
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