Hi folks: A few quesitons today (different threads for each.)
My LLMD took blood for a CD-57 test. I understand that it is a good indicator as to a)How badly you have Lyme and b)likelihood of remission once treatment is complete.
I am told that <60 indicates Chronic Lyme 60-100 indicates Lyme >130 indicates recovery from Lyme and remission possible >200 normal. remission unlikely.
Does this jive with what other's have found? Just curious what your CD-57 values are.
I don't have mine yet, but will post as soon as I know. Hoping I"m close to 100, but not sure.
Posted by Florence1 (Member # 22960) on :
mine was 28 and I have the same values as you posted......good luck...............
Posted by bcb1200 (Member # 25745) on :
Have others who have or are nearly recovered showed an increase in CD-57.
For those in remission and 100% off drugs...what is your CD-57?
I'm feeling better about my LLMD here in Mass the more I learn about her. Very glad she did this test.
Florence...what do you meant he same values I posted?
Posted by Florence1 (Member # 22960) on :
like you wrote <60 chronic lyme, >200 remission likely...etc etc.....from the information i have gained the vlaues you quoted where what I understood to be correct.......there is lots of posts on cd 57 if you do a search you will see peoples opinions on the tests and wether it correlates to how they are feeling......
Posted by Lymetoo (Member # 743) on :
Yes, do a search here.. you will find tons of people with HIGH CD57's who feel horrible and then some with low CD57's who are well, or almost well.
Makes no sense to me. Not valid in my humble opinion after what I've read here over the years.
Posted by kday (Member # 22234) on :
Perhaps those with high CD57's have some type of co-infection causing it, or are misdiagnosed with Lyme. Maybe some have a different strain of borellia where that subset of natural killer cells remains normal?
As I understand, a low CD57 generally indicates illness, but who's to say someone with a low CD57 can't feel well? They may still have borellia suppressing CD57, but is it unreasonable to think that even though these people still have borellia, they can feel well anyway? Just because you have the causative borellia doesn't mean you have Lyme Disease.
I think once the CD57 is above 60, the levels are used to predict the likelihood of relapse. If you are above 60, and still feeling bad, perhaps you are experiencing symptoms of a co-infection, toxic overload, or simply side effects from long-term antibiotics. I'm not saying CD57 is a perfect test by any means, and maybe in the end it's not a good test, but I think many misunderstand its purpose.
I don't think CD57 is as black and white as many of us want it to be. Perhaps there will be a better indicator in the future to determine wellness.
Posted by terri3boys (Member # 12993) on :
Is the "Natural Killer Cell Surface Ag." the same? It says that, along with "Ab NK (CD56/16)" and then "% NK (CD56/16)".
If so, according to the reference range posted above, I think I may be in pretty good shape. I don't know what it means if you've been in ALL of those reference ranges, like I have...........
However, why would I continue to come back with random Lyme bands? Sometimes it's just a couple of IgG bands and/or an IgM band.
It seems like the IgG bands that have been showing up keep getting "lower" on the scale, and ones that I haven't had show up before.
Like Band 23, now Band 18 ---- IgG. As far as the IgM, it always fluctuates among all 3 --- 41, 39 and 23. Never 2 IgM bands show up at the same time.
In the IgG category, it runs the gammit: I think I've had all bands show up at different times, from 4 at a time to just 1. I've had all of them show up now at one time or another, except for Band 93.
I don't know what to make of that! I haven't been on abx for tx of Lyme for about 2 years. The last abx tornado was the 2.5 months of 6 different abx, plus a steroid shot to get me over what ended up to be a sinus infection that almost cost me my voice box.
That was hell. What my doctors want to concentrate on at this point is my VIRUS "SOUP!" I need to deal with the EBV, HHV-6, CMV, CPn, and I can't remember what else has decided to come join the party..........
I need to order that XMRV (or whatever it's called) test. My doctor wanted me to do that back whenever that report was released, but didn't want me to pay the approx. $700 it cost then.
She wanted me to wait until insurance covered it, which should be right around now. I need to check. I'm due to go back in anyway.
Any input is greatly appreciated!
terri3boys
Posted by bcb1200 (Member # 25745) on :
Hi all...coincidentally, my doc called with my CD-57 results today. I was 84. While not great, at least I am above 60!
Terri3boys...what do EBV, HHV-G, CMV, and CPn stand for?
Posted by jkmom (Member # 14004) on :
I had a few symptoms I recognized as Lyme since my daughter is pretty sick. I've been on abx for 20 months and on the abx, I feel like a well person. If I stop taking them, my mild symptoms come back quickly.
My CD57 was 27 about a year ago and is 36 now. I was shocked that it was so low the first time since I don't feel very sick. But the fact is, my symptoms do come back quickly off from abx. I am not sure what to think about this test.
Posted by Lymetoo (Member # 743) on :
jk... been treated for coinfections yet? Lyme is usually slow to come back .. so you could have coinfections.
Posted by jkmom (Member # 14004) on :
I have been treated for bart with Levaquin. Zithromax and biaxin get rid of my symptoms almost completely within a few days of starting them. Doxy is like being on nothing for me. My theory is that I have bart still but this CD57 test, if accurate, indicates active Lyme.
I am not convinced that I have been aggressive enough with my treatment though. I have an appointment with a new LLMD next Friday to discuss more treatment. I know she hits hard with lots of abx and treats for coinfections, too.
Posted by JunkYardWily (Member # 24271) on :
i wasnt going to bring up my score but since were on the topic i just got tested and it was 160. is this good or bad? at first i was excited but now i have been feeling so poorly lately that i wonder if its good or not. im pretty sure i have lyme as i had 3 bands +.
Posted by bcb1200 (Member # 25745) on :
Well, you are below normal (200), but that is really good. what this may mean is you have Lyme, but the co-infections are causing most of your problems.
Co-infections don't affect CD57 scores.
Posted by kateaton (Member # 24871) on :
does anyone know if the CD57 values are relevant for small children? My dr. wasn't sure and said that kids immune systems can be different.
Posted by Tallahasseeborrelia (Member # 13828) on :
Dr. Burrascano (he was my doc) says that the CD 57 is not for children, only adults.
Also my CD 57 was 80 in 2005, when I was first diagnosed with Lyme, but then I relapsed badly in 2008.
In 2006, after several months of treatment by Dr. B., I was able to work a full time demanding job, work-out three days a week and have a social life.
But since the relapse, going on two years now, I am so much worse than the first time. I have fatigue that I didn't have before.
I see Dr. C in Tampa since my relapse and he put me on IV Rocephin for 4 months, which helped a lot with the fatigue, but not so much with the horrible joint pain and stiffness in my legs.
I should mention that I was co-infected with Bartonella and my second doc (Dr. M in NYC) believes that since my CD 57 was high for someone so ill, that Bartonella did more damage to me than the Lyme.
No one knows for sure if I still have Bartonella or not. Little is known about it and Dr. B. said that it was very difficult to treat.
I also have severe neurological damage, including something called Transverse Myelitis, which has caused me to have foot drop in my right foot.
Needless to say, I have to use a walker to get around.
My point is that even though my CD 57 was 80, I still relapsed pretty badly and am now not able to work.
Every step I take is almost like climbing a mountain. But, I am still going to fight it because I want to get better.
Posted by nspiker (Member # 22824) on :
I posted this on another thread recently.
At a lyme conference a few weeks ago, Dr. B said that the best indication of remission was the CD-57 test, and a good range is 120-157. He said most lyme patients start out in the 20-40 range,and 60 is good.
Tallahassee, you story is disheartening. Hopefully you can find your way back to good health again soon.
Posted by stephfino (Member # 23599) on :
Don't different labs have different ranges of what they consider normal??
I use labcorp. Their reference interval for the normal range of % CD8-/Cd7 is 2-17 and abs.CD8-CD57 reference interval is 60-360.
Are you saying that if the score is not over 130 then remission is not possible??
Where can you read more about this test??
Posted by bcb1200 (Member # 25745) on :
Tallahasee...what was your score after treatment? I know you said you started at 80, but do you konw where you ended? Also...did you get reinfected, or did you just have a relapse?
Posted by Tracy9 (Member # 7521) on :
Mine jives.
A year and a half ago, I was 32. Now I'm 120. My IGENEX test, each time I get it, has less and less bands, and just came out negative for the first time (though still a couple key bands.)
My Lyme symptoms are better. I am sicker than ever, however it is clearly Bartonella and the resultant autoimmune disease I've developed, small fiber neuropathy.
But I've given Lyme a good kick in the teeth. This is great news.
My Bart titers are very, very high, and I test positive on skin biopsy for small fiber neuropathy.
So I think I have plenty of objective evidence that my Lyme Disease has gotten a lot better, and that even though I am bedridden and very sick, it ain't the Lyme right now!
Posted by canefan17 (Member # 22149) on :