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For those who are 100% sure they have Lyme, what's your CD57 #

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Lyme Disease
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ktp812
Veteran Member
Joined : Jul 2007
Posts : 732
Posted 7/23/2010 4:54 AM (GMT -7)
BP- just wondering what your doctor uses to treat your EBV. Although I have never had a high test I still believe that is my problem.
It seems as though every other time I have a WBC blood test done it is very low but then bounces back.

The doctor keeps saying I probably just had a little virus but I think it pretty much stays active since I have chronic exhaustion.

I was on Valtrex at one point for a month and didn't feel any better so the doctor had me stop.

I am still trying to figure this out since my tests never show up anything really...

Unfortunately when I first became sick in 2004 they never tested for virus's.

Thanks..Kim
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bucci
Veteran Member
Joined : May 2006
Posts : 1477
Posted 7/23/2010 5:11 AM (GMT -7)
okay are you ready for this...my CD57 was 88 when I did all the testing for lyme in november 2009.

after antibiotic IV, chelation, heavy metal detox (4 o them), ozone, vitamin..homeopathy stuff.

CD57 was 80

My lyme testing was extremely thorough and I have to look up the bands and all this other stuff
but what I remember was chalmadial pneumonia, HHPV6, EBV, erichilles, bartonella

OH and I also was diagnosed in 1996 for HEP C but believe I contracted that in the seventies.

also another area I am very interested in is parasites. It was a stool test that led my Hep C specialist to
believe I had a tick borne thing.

I'm gonna start another thread on that.
the parasites I had were .. strongylides ( horses get this, ) diamebia fragialis, hook worm.

I was told that ticks carry parasites.

so it looks like I have the highest CD57 in the bunch. and the lower the number is what they are looking for.

MY dictor told me the guidline numbers according to standard(???) and I think according to that scale I don't even have lyme??? but my doctor told me his range is much different higher.

he also said that een though he always uses it ....his scale is much higher that he uses because he has seen too many people with obvioous lyme and numbers .

when I get chance I will dig up my other tests. they are very confusing.. I should have them laminated in gold . all this blood work was in the range of $6000
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BP
Regular Member
Joined : Jul 2010
Posts : 34
Posted 7/23/2010 11:21 AM (GMT -7)
Kim - I have not yet talked to her specifically about my EBV test but she did tell me she has tried people on Valtrex and Valcyte but that a lot of people got worse or add side effects that they couldn't deal with. Those anti-virals can be very nasty drugs. I do not believe I will try them first thing.

What I am going to try is lauricidin. I have read that it works well for EBV and Lyme (so they say).

http://www.lauricidin.com/

Did you not have an EBV panel done? 95% of the population have the virus, it's just a matter of who has it turned on. The panel will tell you if you have a current, old or reactivated infection.
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Razzle
Veteran Member
Joined : Aug 2007
Posts : 4415
Posted 7/23/2010 4:31 PM (GMT -7)
Bucci,

It is interesting that your CD-57 is higher than many others here. There are some in the local Lyme group who have very high CD-57's, as if their immune systems are over-activated instead of being suppressed. I don't think researchers really know all there is to know about the CD-57...and I thought at some point somewhere I read something about other infections possibly rendering the CD-57 test inaccurate, but when I tried to find where I read that, I couldn't find it again so I don't know...maybe it was in a dream or I am remembering wrong...but I do know not all LLMD's bother with the CD-57, so there is some disagreement apparently about its usefulness vis-a-vis Lyme/related infections.

Take care,
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InfectedinFL
Regular Member
Joined : May 2010
Posts : 59
Posted 7/23/2010 4:32 PM (GMT -7)
CD57 score of 176

Positive Igm bands:

23-25++

31+

34 IND

41+

58+

83-93+

Positive IgG bands:

28+

31+

34 IND

58+

 

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BP
Regular Member
Joined : Jul 2010
Posts : 34
Posted 7/26/2010 3:32 PM (GMT -7)
Since you have all been so helpful and welcoming I wanted to give you an update and to thank you all for all your help and kindness.

I just spoke to the doc who thought maybe Lyme was my problem because of one band in Igenex and CD57. Well, it appears that it not my problem. My problem is a nasty EBV reactivation. My CD57 is now 207 and she says with my immune system is just exploding all over the place (Immunoglobulin levels very high) that the one band must be a cross reaction. She also mentioned that my candida tests are negative and that's another strong indication that I don't have Lyme since apparently they kind of go hand in hand. Not sure if you all have that experience? I had a feeling it wasn't Lyme and I was right. My inner voice rarely fails me.

So, thank you again everyone and I wish you all the best. I have been sick for 14 years but Lyme certainly trumps what I have been through. You are all so brave to keep fighting such a nasty illness and perhaps one day there will be a cure for everyone!

Hugs to you all!!!!
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Razzle
Veteran Member
Joined : Aug 2007
Posts : 4415
Posted 7/27/2010 1:50 PM (GMT -7)
BP,

My Candida tests are always negative, too...so not everyone with Lyme has Candida.
But yes, trust that inner voice because it is usually right. Like my inner voice kept telling me I did not have Crohn's, Lupus, IBS, Somatoform, and all the other stuff I kept being diagnosed with, and finally I found a physician who was willing to think outside the textbook and he figured out I had Lyme. This diagnosis was the first time in a long time that I acutally felt like I had a real answer to what was going on with me. That inner voice can be a real God-send and I'm glad you have this gift, too.

Take care,
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BP
Regular Member
Joined : Jul 2010
Posts : 34
Posted 7/27/2010 1:52 PM (GMT -7)
Thank you Razzle. All the best to you!
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ktp812
Veteran Member
Joined : Jul 2007
Posts : 732
Posted 7/27/2010 2:29 PM (GMT -7)
BP- I am glad you found out what was wrong..I have never had and EBV panel done. I think just the single test so I will look into that.

I was put on Valcyte for a short time last year and started having side effects. I stopped immediately since there had never been any indication of a virus.

My inner self tells me I don't or never had Lyme so I am still searching.

Good luck to you and I hope you feel better soon!

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BP
Regular Member
Joined : Jul 2010
Posts : 34
Posted 7/27/2010 4:07 PM (GMT -7)
Thanks ktp812.

I have to say, just because you felt worse on Valcyte doesn't mean you don't have EBV. That is a very hard drug and unless you have high titers and high HHV6 titers, Valcyte isn't really used. I would get the panel as well has tested for HHV6 and then re-evaluate.

I am going to try Lauricidian. I have heard good things. Keep it in the back of your mind, just in case.

Good luck to you as well and I hope you feel better soon too.
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ktp812
Veteran Member
Joined : Jul 2007
Posts : 732
Posted 7/27/2010 5:06 PM (GMT -7)
I see the doctor next month so I will ask for those tests. I think my doctor gave me valcyte because he didn't know what else to do. I had just finished 30 months of abx for Lyme and it didn't really help.

I wasn't crazy about going on the valcyte but gave it a try anyway. He said he had only given it to one other patient because of its side effects..yeah really made me want to try it!

Thanks and good luck in your treatments.

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+Lyme
Veteran Member
Joined : Apr 2009
Posts : 1304
Posted 7/27/2010 7:18 PM (GMT -7)
I had EBV panel done last year that I knew was high. My new LLMD remarked that it is quite high, indicating active re-infection w/ EB.

I know that I have Lyme, and I believe this is how my viruses reactivated. Just so happens that I had significantly high numbers on 3 of them. However my new Dr was only concerned w/ the EB, as it was the highest. He said that even tho my other 2 (see signature) were 'high, out of range,' it was possible that these still could mean past infections.

As for CD57 -- and this Dr treats AIDS patients as well, he commented that he knew other LLMDs used this for diagnosis. And he said that he sometimes uses this test to track imrovement. He did NOT say that the CD57 is indicative in other diseases, but did talk about the fact that many of his patients who are very sick, have high CD57s, AND that he has many patients who have been treated, or are currently under treatment and getting better still have very low CD57s.

Basically, he was commenting that this test can be used for tracking progress, but that it does not always indicate how much a patient has improved.

Given the fact that Lyme spirochetes can go hiding, or ball up into round cells to hide from the ABx, I wonder if the CD57 can be used to indicate TRUE improvement of the disease -- and that maybe, just maybe, many people feel better on abx, WHILE on abx because the Lyme is in hiding.

So I am now wondering if this test can possibly be used NOT necessarily to track improvement that the patient FEELS, but actual
improvement of the infection.

Sorry if that does not make sense. It is late and I have owned a true Lyme brain today......

TOGETHER we will get to the bottom of this!
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ktp812
Veteran Member
Joined : Jul 2007
Posts : 732
Posted 7/28/2010 5:03 AM (GMT -7)
I still am unsure of the CD-57 test. I had it done 4 times during treatment because the doctor wanted to see if I was making progress...First 21-38-60-45. So by the time I ended treatment it was at 45.

It was highest (60) while I was on Rocephin..not sure that means anything. I still stopped treatment because everything had been tried and I was having terrible yeast problems.

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BP
Regular Member
Joined : Jul 2010
Posts : 34
Posted 7/28/2010 10:46 AM (GMT -7)
One more quick question, ktp812. Did you have all your CD57 done at Labcorp or did your doctor use Quest. My first test where I had 38 was Labcorp. The last one where my results were 207 was Quest. I though Labcorp was the only lab to use but my doc said she's fine with Quest. I didn't push the point because she seems to be very good and I had a feeling it wasn't Lyme anyway.
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+Lyme
Veteran Member
Joined : Apr 2009
Posts : 1304
Posted 7/28/2010 8:24 PM (GMT -7)
WOW BP! Any theories regarding the vast difference in results from these 2 labs? I think we oughta know!
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BP
Regular Member
Joined : Jul 2010
Posts : 34
Posted 7/28/2010 8:28 PM (GMT -7)
+Lyme, not a clue. The Labcorp was last summer and Quest last month. I certainly have no idea why the difference and it didn't even occur to me to ask her. I will try and remember to ask next time we talk and will certainly report back. It would be interesting to see what Labcorps numbers are now, wouldn't it. Hmmmmm.
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BP
Regular Member
Joined : Jul 2010
Posts : 34
Posted 7/29/2010 1:23 PM (GMT -7)
An update. My doc is so great. I just emailed her to see why the difference and shouldn't we just double check by doing another test at Labcorp and she is calling in the order.

I will let you all know what becomes of the results.
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ktp812
Veteran Member
Joined : Jul 2007
Posts : 732
Posted 7/29/2010 2:10 PM (GMT -7)
BP- all my CD-57 testing was done through LabCorp..

I was seeing a top LLMD and he said he doesn't even test it so I guess it never really mattered to me what the results were.

I have read about so many different results with this test that I just don't think it means much of anything.

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BP
Regular Member
Joined : Jul 2010
Posts : 34
Posted 7/29/2010 2:18 PM (GMT -7)
I think so too, ktp812. I just asked her for another test just to compare since the results are so different.

It was the low CD57 that made her ears perk up but I think you're right. To many weird labs, high low, sick not sick, treated not treated. It makes no sense.
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ktp812
Veteran Member
Joined : Jul 2007
Posts : 732
Posted 7/30/2010 4:52 AM (GMT -7)
BP- I totally agree with you about the labs...makes no sense. I just wish I had known more about this disease before having repeated tests over and over..

I have learned alot online forums and that is what got me thinking that these lab tests are so unreliable. So many people with very low CD-57 and feeling good while others with high feeling terrible.

It was my doctor here in NH that did the original test but when I went to the specialist in NY he didn't even care about the number. He told me in his practice the numbers are so much all over the place he doesn't use it at all...

Oh well...live and learn

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switters
New Member
Joined : Aug 2010
Posts : 1
Posted 8/27/2010 6:21 PM (GMT -7)
Hi everyone,

My first post here. I also have questions about the validity of the CD57 test, as I'm currently trying to figure out whether I have Lyme.

It seems there are actually two separate questions here:

1. Is the CD57 a reliable diagnostic indicator for Lyme?

2. Is the CD57 a reliable way to track the progress of Lyme treatment?

From what I've read, it seems most LLMDs believe that low CD57 levels indicate chronic Lyme (assuming HIV has been ruled out). Is that your understanding as well?

As far as #2, after several years of experience testing Lyme patients throughout their treatment, many LLMDs have found that CD57 levels don't necessarily correlate with improvement (or lack thereof).

I've also heard that CD57 tests are not very accurate and can vary by up to 30% from day to day. The immune system is incredibly complex, and a test is only a snapshot of a particular moment in time.

That said, my CD57 count was 38, which is very low. Even if it was off by 30% on the low side, it would still be lower than normal. I have an IgeneX positive plasmid PCR and positive IgM, although my IgG was negative. The confusing thing is my symptoms don't remotely resemble Lyme from what I've read in several books and on several internet forums. My symptoms are almost entirely gut-related, and in fact I've been diagnosed with Crohn's disease - although not a typical case.
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Caldonia Sun
Regular Member
Joined : Aug 2009
Posts : 310
Posted 8/27/2010 7:27 PM (GMT -7)
234
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kayla33
Regular Member
Joined : Jul 2013
Posts : 86
Posted 7/23/2013 4:35 PM (GMT -7)
Just to add, I have read in places and been told by a doctor that other coinfections can bring down the CD57.

Mycoplasma and Chlamydia Pneumoniae being two, as well as the typical lyme coinfections.

Interested to hear of everyone else's CD57 count. Please post if you have one.
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MarieLS
Forum Moderator
Joined : Dec 2012
Posts : 2690
Posted 7/24/2013 5:34 AM (GMT -7)
My CD57 is 15
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summer16
Veteran Member
Joined : Jul 2012
Posts : 1382
Posted 7/24/2013 9:53 AM (GMT -7)
My doctor does not believe in the test.
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