I just returned from a visit w/ my LLMD and I was told something new. I am very confused; so if this does not make sense I apologize. He told me that I need to have my blood drawn in order to look at my white blood cell count. Apparently, if it is below a certain marker it means that I will not be able to respond to treatment ABX. He said that this is relatively new and that they are finding that patients that are below whatever number (40, I think) were usually not able to get into remission. Can anyone confirm or explain this? Thank you!
Posted by Lymetoo (Member # 743) on :
Never heard of that. I hope your dr is not in TX.
Posted by LED (Member # 9620) on :
I drive to LA, I learned my lesson about Texas Dr.
I found the name of the test: CD57
Posted by adamm (Member # 11910) on :
Yikes...my CD57 was 20! So I'm screwed, I suppose?
Anyone with a CD57<40 ever fully recover here? I haven't
responded to abx yet, and this is my fourth month.
Please, can ANYONE refute this?
Posted by Dawn in VA (Member # 9693) on :
For quick clarification, CD57 is a type of Natural Killer cell, which in turn is a type of leukocyte.
For reassurance, mine started out at 13. It's bounced back and forth a bit, but has recently hit the 60 mark. I've been on treatment for about 1.5yrs now.
Some LLMD's give lots of credence to CD57 numbers while a few others don't. If you do a seach for "CD57" here, I'm sure many results will come up.
Posted by adamm (Member # 11910) on :
up
Posted by disturbedme (Member # 12346) on :
I'm not sure the answer to this either, but I'm sure it IS possible to get better no matter what, it just may take longer.
MY CD57 is 9 right now and I feel like I'm at 70%... That wouldn't make sense then would it if your doctor was right that no one would get better/feel better with such a low CD57.
Plus, he also said that if that low of a CD57, a person wouldn't respond to ABX treatment. I HAVE, so it seems he's wrong right there...
Good luck! Posted by treepatrol (Member # 4117) on :
Get on abx's immune system will catch up.
Posted by LED (Member # 9620) on :
Thank you for the responses/hope. I think that his main point was that even though I might feel 70% better, the CD57 would show that in reality I am not at 70%, yet. I guess he was trying to say that for me any improvement helps, however I might not ever be at 100% as according to the white blood cell levels. I think that this is a way for the Dr. to monitor treatment. He did say that he was not trying to bust my bubble, just that since this is chronic Lyme I might not ever be at that 100%. I would gladly accept 90%, any little bit helps!
Posted by doc (Member # 14471) on :
The wife saw her llmd (well known) yesterday.
I asked about 57 test as she has not had one,
and he said it is not as important as once thought. Doc
Posted by Lymetoo (Member # 743) on :
PLEASE do a search here and learn more about the reliability of that test.
It's not worth the blood taken for it. If you'll find the old discussions, you'll see that for yourself.
Some with high scores are feeling terrible and those with low ones are feeling great. It's all over the chart.
You can get well, but you have to believe you can get well!
Posted by MommaK (Member # 10376) on :
Hello All!
I think the point is that the lower your number the more likely you are to have relapses, and therefore might be one of those who take abx for a long time to maintain remission.
I have also heard the dr's don't rely on this as much anymore. I think it's useful info, but not the only piece of the puzzle.
Here is what another Dr says about CD-57.
************************************************ Lyme CD57 Test THE CD-57 Striker Panel Test Our ability to measure CD-57 counts represents a breakthrough in Chronic Lyme Disease treatment. It can be used to help determine how active the infection is, how well the treatment is working, and whether, after treatment ends, a relapse is likely to occur!
This is how it works: Chronic Lyme infections are known to suppress the immune system. The Lyme spirochete can affect all major cell types of the immune system, but it most clearly can impact a specific subset of the natural killer cells. This is called the CD-57 subset. Just as in HIV infection, which suppresses T-cell counts, Lyme suppresses Natural killer cell count such as CD57. As in HIV infection, where abnormally low T-cell counts are routinely used as a marker of how active the infection is, in Lyme we can use the CD-57 count to indicate how active the Lyme infection is. When Lyme is active, the CD-57 count is suppressed. We currently are having our tests run by LabCorp because published research on this test was based on their methods. At this lab, the expected range for the CD 57 count is above 60. However, in the chronic Lyme patient, CD-57 counts are usually well below 60 and may be at risk with levels of 60-100.
This test can be run at the start of therapy, then every several months to document the effectiveness of treatment. One hopes to see a stable number or a rising trend over time. When antibiotic therapy is finally at an end, if the CD-57 count is not above 60, then a Lyme relapse is more likely to occur.
Test interpretation: Low CD57 occurs in chronic Lyme or when the disease has been active for over 1 year. A review of the affects of other infections, only Lyme spirochetes lowers the CD57. Following is the criteria established by research.
Test interpretation: Low CD57 occurs in chronic Lyme or when the disease has been active for over 1 year. The count reflects the degree of infection. It is not a diagnostic test but is used as a marker for Lyme being active. Test done by LabCorp.
>200 is normal < 20 severe illness 0-60 is seen in chronic Lyme disease > 60 Lyme activity indicates improvement
*********************************************
Also told that if you don't have enough albumin in your blood that abx don't work effectively. They rely on the albumin to carry them.
However, I read that if you take many abx and there is not enough albumin to bind with them and carry them, then you can have a level of the abx higher than desired in your blood.
Everything about this disease seems to be a catch 22! I do feel for the doctors, this puzzle is quite complicated! Pray for their guidance!
MommaK
Posted by sixgoofykids (Member # 11141) on :
My LLMD is a well-known on in NY and does not use the CD57. As tutu says, sometimes a person will feel good and have a low one, yet someone else will feel bad and have a high one.
He treats based on symptoms.
Posted by adamm (Member # 11910) on :
Has anyone gotten back to >200?
Posted by cantgiveupyet (Member # 8165) on :
The thing is most of us dont know what our CD57 was pre lyme and what is normal for our own bodies.
My first test was a 10- I felt like death, 89lbs and fading fast. I really thought it would be lower.
It is now 42, i feel better but not well...only change I made was going on Armour thyroid.
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