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 |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 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 -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 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.
posted
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.
-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
| IP: Logged |
posted
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 |
posted
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." Posts: 697 | From Northern California | Registered: Jul 2009
| IP: Logged |
nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
Mine started at 60 ,went to 140 ,then to 28ish in three years........yuck !!!!!!!!!!!!!!!!!!!
Steroids Didn't help this fight one bit...still trying to reverse or get past what damage it did from 18 months ago....
Posts: 2563 | From Denver,CO | Registered: Aug 2011
| IP: Logged |
posted
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 |
posted
Mine is about 26 and I'm not all that sick. Our doc. says it's not a very reliable tool.
Posts: 59 | From Seattle WA | Registered: Feb 2011
| IP: Logged |
lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
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. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
| IP: Logged |
posted
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." Posts: 697 | From Northern California | Registered: Jul 2009
| IP: Logged |
-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
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.
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
| IP: Logged |
posted
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 -
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
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.
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
| IP: Logged |
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! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
aperture, thanks you too, according to my doc, ideally your levels should be above 170, but who knows, hearing so many different things.
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
| IP: Logged |
'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
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.
Posts: 1233 | From Dover, NH | Registered: Sep 2008
| IP: Logged |
posted
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 |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[tsk]](graemlins/tsk.gif)
Didn't help this fight one bit...still trying to reverse or get past what damage it did from 18 months ago....
![[Smile]](smile.gif)
Printer-friendly view of this topic