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» LymeNet Flash » Questions and Discussion » Medical Questions » CD-57 is 88, why am I so ridiculously sick????

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Author Topic: CD-57 is 88, why am I so ridiculously sick????
aperture
LymeNet Contributor
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Hi Guys,

I have been reading about how the CD-57 test is such a good indicator of how sick a Lyme patient is. If that's true, then with a CD-57 of 88, I should feel great, not like I'm at death's door on a daily basis. What's up with this?


P.S. I was lab positive for:
IgM and IgG Brucella, IgG Ehrlichia, IgG Anaplasma, have high HHV6 levels

I was clinically diagnosed with:
Lyme (Igenex IgM +41,+66, ind 39, ind 83-93)(IgG Ind 41), Bart and Babesia

--------------------
aperture

Posts: 551 | From Louisville, KY | Registered: Nov 2011  |  IP: Logged | Report this post to a Moderator
Keebler
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-
My CD-57 was also very odd a few years ago and the LL ND said that in some patients, she can tell just by looking at a patient and the test that - for that patient - the test just is not a valuable tool.

There are many LLMDs who are now seeing that the CD-57 just is not ALWAYS a very good indicator of all things they had hoped.

It may help but it's not fool proof. It cannot show everything and there are so many variables and considerations.

In some patients, the results just don't make sense. But, then, that's pretty much the way lyme goes.

Like looking in the side mirror of your car where it says "caution: vehicles may be closer than appear."

Same with lyme: "caution: things may not appear as you would expect."

And that is why a good doctor has a good brain and good instincts, to put their detective skills to work in other ways, then.

Keep in mind, though, that lyme is not the only thing to consider.

For some, the CD-57 result might suggest targeting coinfections if the patient is still very ill.

What does YOUR LLMD say about the test result?

From the chart below, it would seem that you would need to get it to 120 before even considering stopping treatment for lyme. Yours is 88.

Only Lyme (not co-infections) makes CD-57 low
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Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
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-
Steve1906 just posted this link. There is an explanation of CD-57 here. But, again, it's just one tool of many.

Whether or not you were on antibiotics at the time of the test may also alter the results.

------------

http://sonyafightslyme.blogspot.com/2011/03/burrascano-notes-from-march-21st-talk.html

Dr. Burrascanos definition of Lyme Disease

March 29, 2011 presentation

DVD of the presentation available through Lyme Disease.org:

http://www.lymedisease.org/lyme_store/lyme_store_burrascano.html

Putting Lyme Behind You, March 2011
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
aperture
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Thanks Keebler for that explanation. My LLMD/ND thinks I am sick with a LOT of infections. So it makes sense what you say about looking at co-infections. It seems to me that my co-infections are causing worse symptoms than the Lyme, at times.

I'm glad that you reiterated that the CD-57 is low with Lyme only.

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aperture

Posts: 551 | From Louisville, KY | Registered: Nov 2011  |  IP: Logged | Report this post to a Moderator
RC1
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My CD 57 was 300 went down to 200, I tested positive for Lyme, Bartonella, and Babesia, and I was extremely sick.

The test isn't always indicative of how bad a person has Lyme. For some people its a good marker, but not all.

Posts: 845 | From Northeast | Registered: May 2011  |  IP: Logged | Report this post to a Moderator
aperture
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Wow RC1. Your results truly prove that the test is not the be all end all, when it comes to severity of disease.

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aperture

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BoxerMom
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I think we are twins. My last CD-57 was 87, and I am still fighting co-infections.

--------------------
 - Must...find...BRAIN!!!

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farraday
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We celebrated when my CD57 got up to 60!!! I started at 20 and make slow but steady progress.

I agree, however, that it alone does not tell the whole story. The co-infections seem to be the toughest to get rid of. My lyme numbers are better, but I am still very sick.

--------------------
DOCTOR: "I don't think you are sick."
PATIENT: "We are all entitled to our opinions. I don't think you are a doctor."

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nonna05
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Mine started at 60 ,went to 140 ,then to 28ish in three years........yuck !!!!!!!!!!!!!!!!!!!

Steroids [tsk] Didn't help this fight one bit...still trying to reverse or get past what damage it did from 18 months ago....

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bigstan
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Me 2006 11, then last tests as follows 23, 36, 39, 48, 52, 56


And I do play the numbers regular in the Michigan Mega-millions. I have matched 4 numbers a few times for a cool $150 cash. Hope to hit the big one soon. LOL

--------------------
HERX is a Four Letter Word!

Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007  |  IP: Logged | Report this post to a Moderator
aperture
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I wonder if the fact that I also have the HLA "dreaded genotype" of 4-5-53 complicates things?

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aperture

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susieq2
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Mine is about 26 and I'm not all that sick. Our doc. says it's not a very reliable tool.
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lymeinhell
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I continued to check every 3 mos for a year and a half after I stopped abx and never got over a 22 (absolute). And I felt great then, and now 7 years still off abx, no relapses, I live a normal life and feel better than I have ever.

I even went as far as took all my CD57 test results to an Immunologist who said (and I quote) 'If it ain't broke, don't fix it. The CD-57 is a teeny tiny snapshot of your immune cells at that moment. They could be low because they are busy killing off bacteria, or you could even have gum disease. But given your amazing good health now and recovery, there's no reason to be concerned or even do further testing'.

It's a helpful guideline in the diagnostic sense, but not an indicator of much else. We stopped testing it as it just freaked me out.

--------------------
Julie
_ _ ___ _ _
lymeinhell

Blessed are those who expect nothing, for they shall not be disappointed.

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farraday
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Where did you get tests done? My LLMD seems to think that is most important. I know that some of my test samples are sent to Jewish National Hospital in Denver. Lyme is done by Igenex. Another lab he chose does the rest.

--------------------
DOCTOR: "I don't think you are sick."
PATIENT: "We are all entitled to our opinions. I don't think you are a doctor."

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aperture
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I had it done at Labcorp.

--------------------
aperture

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CD57
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I thought it had been concluded by now that this test is worthless? None of the docs I have seen use it except at the beginning for diagnosis.
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aperture
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Fitting name for this post, CD57 [Smile]

I was confused because I had this result at the beginning, so it threw me for a loop.

--------------------
aperture

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daniel
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My cd 57 is about 290-390... But still sick
Posts: 371 | From velocity of light | Registered: Sep 2009  |  IP: Logged | Report this post to a Moderator
farraday
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My doc will not use Lab Corp.

--------------------
DOCTOR: "I don't think you are sick."
PATIENT: "We are all entitled to our opinions. I don't think you are a doctor."

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Robin123
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I asked this question of Dr S, the originator of the CD57 test, and he said a high CD57 score doesn't always correlate with the severity of symptoms.

But I think a very low CD57 score does correlate with not feeling well. If I am incorrect on this, please chime in - thx -

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shannon12
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my cd-57 is a 4!!! Doctor said this is dangerously low, that's another reason why I'm going on iv's right away, cause my body can't fight it with nkc being this low. I don't know for me it's an indicator that I don't feel well, cause I feel like death, I'm interested to see if my levels go up if I ever get better.
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aperture
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shannon12, I hope you see some improvement soon.

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aperture

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Lymetoo
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quote:
Originally posted by Robin123:
I asked this question of Dr S, the originator of the CD57 test, and he said a high CD57 score doesn't always correlate with the severity of symptoms.

But I think a very low CD57 score does correlate with not feeling well. If I am incorrect on this, please chime in - thx -

-
From what I've read... I agree with that. I have heard of plenty here though whose score was low and like "susieq" they are sometimes feeling OK or better.

farraday.. LabCorp has the best CD57 test.

--------------------
--Lymetutu--
Opinions, not medical advice!

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shannon12
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aperture, thanks you too, according to my doc, ideally your levels should be above 170, but who knows, hearing so many different things.
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'Kete-tracker
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The actual count means diddly-squat, aperture.
It's how it *changes* with treatment that's moderately uselful, for most.

If, after being on an abx protocol for a couple months, your CD-57 count Jumps Up a chunk, that means the protocol is a good one for you & that you should stick with it... Maybe even up the abx dosing, IF possible, after consulting the LLMD.

I think my count was 85 a month into treatment & feeling like s&!#, 38 after 4 mo.s and exactly 85 again (!) a couple months into my final (4th) protocol- which was a real turning point, for me.

Most "healthy" people have counts well over 120 but it varys greatly.

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shannon12
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many bites im just curious, we're you infected multiple times with lymes? and did you get a rash each time?
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012  |  IP: Logged | Report this post to a Moderator
   

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