Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
Hi everyone,
I had the CD-57 test done, and it came back 128.
The count says between 60-360.
They are saying they dont think it is still lyme with me. I am going down for a visit with LLMD.
He is not sure though about this test, as it is new here in Canada.
I am not getting well, and was going to see an ID Dr, for possible, IV route for LYME, but then this test became available so had it done. Maybe it is a good thing, maybe not, hard
to get IV here.
If I was REALLY sick with lyme, and needed IV, what would this test say?
Can you be really sick and have this test show good? Is 128 good?
I had a positive lyme test with the Western Blot, so this was good, this test was something I wanted to get done, so did the LLMD, he suggested it.
I am very sick from light still, nausea, breathing not good. I was treated for babesia, but the LLMD thinks it is ok, but
could change his mind, we are working together to figure this out.
Is there any other thing that may help me to tell you on this test that someone would know what it means. I will be seeing the LLMD
next week.
I became light sensitive while IN lyme treatment. I am presently on Biaxin and Flagyl but it is not going well, not getting well anymore.
Any comments welcomed.
thanks,
Trish
[ 01. September 2006, 05:05 PM: Message edited by: Health ]
Posts: 1250 | From Canada | Registered: Aug 2004
| IP: Logged |
savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
From what I remember, anything above 60 is good.
Posts: 1603 | From ny | Registered: Aug 2006
| IP: Logged |
There are others on this board who know scads of stuff like this... unfortunately, I am not one of them. :0) But I'm sure one of them will pop in to answer your questions.
The only thing I can offer is that a CD-57 of 128 is pretty good in a normal, healthy person. But my LLMD says it's best to get up closer to the 300 mark if you have a compromised immune system, like those of us with Lyme.
It's a good test and studies have shown it to be a very reliable indicator of immune system strength, particularly in regards to Lyme. I think if you Google it along with Stricker's name, you can find out more.
Good luck!
Posts: 220 | From central TX | Registered: Jun 2005
| IP: Logged |
posted
Evidently it is a good indicator of lyme status for some people, but others have not found it to correlate with their current feelings about how sick they are. Don't know what to make of this. Maybe coinfections confuse the picture or there is lag time in the response of these cells.
How long were you treated for babesia? This can be hard to get rid of. How about bartonella? Any chance you have that too?
My test result was 48 and I know I still have neurolyme, but think the babs is gone, knock on wood. My immune system in general has taken a big hit, did poorly on all three measures.
[ 01. September 2006, 06:04 PM: Message edited by: lou ]
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
thanks everyone,
On my Labcorp test it says 60-360 MY result was 128. How can you lou have 48? it doesnt go down to 48, it only goes between 60-360.
Lou, I was treated for Babesia for about 3 months, used the Clindamycin and Quinine,
I do not have coverage for mepron, I had a negative babesia microti.
The herxing on the clindamycin/quinine was the worst herxing I have ever endured. I am not sure if I still have babesia,
I tested borderline for Bartonella in 2004, I was not treated, said I did not need it.
I think? I may be tested again for these coinfections here in Canada,
I stopped antibiotics and am so ill I almost feel death is going to take me.
It is tough now, I thought it was going to be a low CD-57.
I have also, facial paralysis that comes out from time to time, in the light, watching TV, comes out in the shower, comes out with herxing, the left side,
goes numb. This is a clue to something.
thanks, More input if you can anyone?
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
| IP: Logged |
posted
Actually the Labcorp numbers are their standard range of "normal". Your result can be lower than those numbers, which means you have basically no immune system.
My CD-57 was a 58, and my mom's was 34. Mine is now about 120 but I still have severe symptoms and feel like doggy-doo.
Increasing your CD-57 numbers help your body fight off other buggers that try to come your way, like catching every single thing that goes around. But if the numbers are high, it doesn't necessarily indicate that the Lyme is under control - just that your immune system is stronger.
There's a good article about CD-57 in last month's issue of "Public Health Alert" (page 8):
Hope this helps a bit!
Posts: 220 | From central TX | Registered: Jun 2005
| IP: Logged |
Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Well, mine was 40 and I know Lyme patients who had CD-57 of single digits. So it can go really low.
However, one Lyme friend of mine, who was bitten about the same time as I, went misdiagnosed for about the same length of time as I, and has some similar neuro symptoms, had a CD57 much more like yours. Yet after many months of treatment, it went way down, much to the surprise of her Lyme practitioner.
This is when it became apparent that she had Bartonella and began treatment for it and is now improving again.
So perhaps a coinfection is very much involved. My Bartonella test did not turn positive until I began Bart treatment although I had the clinical symptoms long before that.
The facial paralysis/Bell's Palsy issue is usually listed in just about every list of Lyme symptoms I've seen, so I'd say go by clinical symptoms, not just the CD57 test.
Hope this helps.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
| IP: Logged |
Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
thanks Texas,
you say you have a 120 now, have you been treated for all coinfections?
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
| IP: Logged |
posted
Good question. I was treated for Babs first, and that's what really made the CD-57 number jump higher. But I just found out last week that I have Bartonella also, so I just barely started treatment for that. And it's killing me!
Posts: 220 | From central TX | Registered: Jun 2005
| IP: Logged |
Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
I am EDITING this post, I will keep the info below, I found on my results that it says... HNK1 (CD57) Panel. This is what it is supposed
to say. I was hoping that this was the wrong test, but it is not. Maybe it is a coinfection making me so sick, I dont know.
I am so dang ill lately, I am wondering if I had the test done at the wrong labcorp, my LLMD is always accruate though... maybe not.
Here is what Dr B writes... in his new guidelines.
"Before you have a CD-57 test run, be sure it will be sent to the proper branch of Labcorp, otherwise, they probably will do the wrong
test, wasting your money and time."
How would one know if it is the RIGHT Labcorp?
Mine was done at the Labcorp in Seattle, I am in Canada.
Trish
[ 01. September 2006, 06:37 PM: Message edited by: Health ]
Posts: 1250 | From Canada | Registered: Aug 2004
| IP: Logged |
SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
128 is very good. May not be enough to stop treatment without risk of relapse, but very few people seriously ill with LD have that high of a score. I would be looking for other differential diagnosis or co-infections, etc. if you have a 128 and are seriously ill.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
| IP: Logged |
posted
I concur that 128 is a good score. As I've sure you've heard, many have < 50, or perhaps even as low as the teens.
I'm another one with a high CD-57, over 200, who still feels sick so I'm continuing treatment. CD-57 shouldn't be the only measurement for lyme, but having a high one is always a good indication. That means that you have a whole bunch of natural killer cells around out there, looking for stuff to kill. Now, that doesn't mean lyme and coinfections arn't hiding...
If I'm correct, you are well within "normal" range for a healthy person too! Good luck!
Posts: 691 | From East coast, USA | Registered: Jun 2006
| IP: Logged |
cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
That number is very good. Your immune system is functioning.
Mine is a 10 from labcorp. Very low and i am terribly ill.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
| IP: Logged |
in my opinion, it's critical that you do NOT use the CD57 to determine whether you do or do not have Lyme.
even the really good LLMD who came up with the CD57 test uses all kinds of variables to make his diagnoses, using multiple laboratory tests (not just CD57) and clinical signs and your symptoms. I've heard him speak multiple times about CD57, and i'm convinced it's a very interesting marker to look at. but i think we need to remember that this is not a Lyme test that can prove you don't have Lyme. in fact, as far as i know, given the rates of false negatives among all form of Lyme lab tests, no such test yet exists.
so any doc or patient advocate who uses ANY single lab test as a way to definitely rule out Lyme is not Lyme literate, in my opinion. which doesn't mean you i think you have Lyme... of course i have absolutely no idea what is wrong. but a normal CD57 doesn't mean you don't, if you see what i mean.
CD57 is just not as simple as we wish it could be. for example, a very elevated CD57 can be an indication of other illnesses (cancer etc), while a normal range level (like your is) could just mean your immune system has not yet reacted as it might later in the illness, or you may have other complicating illnesses.... or a number of other things.
i think the most important thing to remember when trying to sort out your diagnosis(es) is that there's no simple way to do it, (unless you are one of the lucky few who comes up raging CDC positive with a Western Blot and get a positive PCR).
a good LLMD will help you sort it all out... but beware of docs who use any one lab result to determine that you don't have any particular tickborne illness, or don't need treatment, because all of that testing is still way too fallible.
bottom line, in the face of negative testing, it's still a clinical diagnosis.
best of luck flossie
Posts: 773 | From yahoo.com | Registered: Dec 2002
| IP: Logged |
posted
I had a 9 when I went to Dr. B- very low but then again very sick! The lyme wasn't diagnosed for a while and then the Babesia wasn't diagnosed even longer after that. I had Bartonella too- so that just kills my immune system. My most recent CD57 scores only have gone up to 27. A move in the right direction but I am still dealing with the Babs and most definitely the lyme. I will dance the day my score goes up to 128!
Posts: 238 | From Bethlehem, PA | Registered: Oct 2004
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I agree with flossie. The test is not conclusive, if it were everyone would be using it to diagnose and that just isn't happening. Before your doctor decides that you don't have lyme, perhaps he should consult with Dr. Stricker through ILAD's. I assume that is a possibility but I don't know that for sure.
The fact that you had another tbd show up as borderline seems like it would warrent an empirical trial to see if it indeed is the culprit.
I assume your doctor is a member of ILAD's. Perhaps he/you can get some help there.
I really feel for you but hang in there and keep on looking for answers. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
Thanks everyone,
What are suggestions here.
I had a 128 on the CD-57 test.
My symptoms still:
burning in the body
When I walk up the stairs, exhauseted and need to ly down, muscles exhausted too, breathing too.
light sensitivity which JUST happened in December of 2005 while IN lyme treatment, other lyme symptoms were getting better, but light
and EMF started while in lyme treatment.
Breathing problems, like breathing is burning. Left sided symptoms, which get worse in shower, and in light. and on computer sometimes.
Burning bones.
Thinking and memory not good.
nausea so far has only been mild now.
Weak and in bed and
CANNOT go more then one day without antibiotics, which is now Biaxin and Flagyl... all symptoms start to get worse, the above symptoms.
Sorry to keep asking, but like to have input with LLMD when I see him.
Has anyone had lyme still rampant with about a 128 CD-57?
I also look sooo sick. 40lbs overweight.
thanks,
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
| IP: Logged |
posted
Don't forget to get hormone testing done. If there is a serious infection in your body you could have adrenal fatigue which could cause too much cortisol which causes WEIGHT GAIN. I know this from personal experience.
Posts: 547 | From Maryland | Registered: Mar 2005
| IP: Logged |
bettyg
Unregistered
posted
Trish, you mentioned extreme sensitivity to lights, on medical; I started a post for:
lights, noise, & chemicals sensitivity's ROLL CALL, and folks have signed up there. We have shared tips helping each of us. Hope you stop by to read to help our mutual problem ok.
You may have to go to screens 2-4; I know it was up there 2-3 days ago. Look for my name, bettyg. Sorry, but I don't time to find it myself since I send welcome notes to newbies and all their PMs back to me with questions.
Good luck to you in Canada! My CD57 was 50! Bettyg
IP: Logged |
posted
babesia can cause air hunger, pain in lungs etc. tests for it are not reliable, so it needs to be treated if suspected. i would seriously consider that, as well as other co-infections.
also, symptoms which appear during treatment for lyme can often be herxing, or change in location/activity of lyme bacteria being effected by levels of abx in blood/tissues.
keep reading - check out the 2005 burrascno guideline. i'm online from a web cafe so don't have the lnk handy, but perhaps someone else can get that to you if you don't have it. or try a search for it, it's a 40plus page document with lots of good info.
best of luck, it's very hard... but can be sorted out.
flossie
Posts: 773 | From yahoo.com | Registered: Dec 2002
| 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!
![[Big Grin]](biggrin.gif)
Printer-friendly view of this topic