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Why are there 2 numbers on the CD-57 result? What do they mean?

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Posted 12/30/2011 11:52 PM (GMT 0)
So I was just looking at my CD-57 result and noticed there was a 2nd result. The first one was 19 which I know is a little low.

The second was 0.92. Is that one okay? What does that one mean? Does it show a current or past infection? I can't find much info on the 2nd number. Thanks!
Posted 12/31/2011 3:00 AM (GMT 0)
I too got two results for CD57.  One was measured in /uL and the Reference Interval is 60 - 360.  From what I understand this one is the most important.  The other is messured in % and the Reference Interval is 2.0 - 17.0.

 

Posted 12/31/2011 4:28 AM (GMT 0)
I couldn't find much information on this second number either, but I can tell you that my doctor tends to gloss over it and focus more on the other number.

If it helps mine was originally 11 and now it's already gone up to 32. In one month's time it managed to go down to 28 - which a lot of people have assured me doesn't necessarily mean "I've gotten worse" - those numbers can vary within a day, even.

In my opinion, from all I've heard and read about CD57 - it's useful to monitor, but it's not a tell-all. I'll try to remember to ask my doctor what that number actually means next time I see her - even if it's not the most important thing in the world I think we all feel better when we know all the information we can!
Posted 12/31/2011 1:49 PM (GMT 0)
Thanks for the replies. How often do you test your CD57's? They want to test mine in 3 months if the symptoms are better.

This is a confusing test because it doesn't seem to correlate directly with severity from the research I've done and patient feedback. Many people seem to have relatively high and even sometimes "normal" numbers yet they are not doing well symptomatically. One explanation I've seen for this is that co-infections should be looked into as only Borrelia causes the drop. Other people feel better and their numbers don't rise and sometimes they drop further. Other people are low and are having severe symptoms. It's difficult to correlate the number to symptomatic improvement.

I know it signifies Lyme and is useful in diagnosis especially for people who are testing negative. Does it always signify chronic Lyme? Does the number drop as suddenly as it rises? How long does it take for it to drop? For example, could one be infected and go from normal to low before the Lyme is chronic? Is the number quicker to rise for people who start out higher? Or is the individual number not significant, only where it falls on the guideline (low/borderline/normal).

I'm trying to estimate how long I've had this and whether or not it can be definitively considered chronic or if it is still acute and therefore likely to have a shorter treatment time. My symptoms are the worst they've ever been right now. They've been getting worse week by week since they came on strongly in September, but I had minor symptoms that went unchecked for many years prior (mainly headaches, fatigue and knee pain) I'm not sure if the symptoms I've had for years were from Lyme or just my lifestyle. I had a positive IgM and am still waiting on the IgG results.
Posted 12/31/2011 4:45 PM (GMT 0)
 

Summer3 said...
I'm not sure if the symptoms I've had for years were from Lyme or just my lifestyle.

This can be one of the most frustrating parts of this illness - trying to weed out what's Lyme and what's lifestyle and what's both and what's neither...I think sometimes it's best to try instead to move forward, rather than trying to figure out the past. I know it's difficult - we want definitive answers, we want to know exactly what we're up against. But this isn't an exact science - there are so many variables and it's nearly impossible to figure out exactly what mechanism is causing your symptoms.

In my case, I was infected 14 years ago, and have been sick to a degree ever since, but I don't think I had an active Lyme infection that whole time. It might've been the Lyme that started you off with your symptoms 5 years ago, or it might've been something else. My understanding is that once the body becomes vulnerable to chronic illness, for whatever reason, it's practically a magnet for microbes and infections.

A lot of factors influence how quickly you get better though, besides how long you've had the actual borrelia infection. I usually test my CD57 roughly every 3 months, and it's been steadily increasing, but sometimes it goes down, too. Overall, it should show a positive trend as you're improving, but it's okay if there are little snags along the way. I've also heard of people feeling 100% better yet still having a low CD57. Have you tested for co-infections??

Posted 12/31/2011 5:33 PM (GMT 0)
I tested negative for co-infections, but babesia is likely.


I don't know when I was infected. I have no idea. I've had many ticks on me every year for the past 5+ years. I've handled hundreds of ticks getting them off my pets.

I never bothered getting tested for anything. I felt tired and had joint pain and headaches for many years. I never did any research on Lyme disease or coinfections prior to recently. I stupidly thought it was a rare problem to get sick from a tick and if I ever did get REALLY sick, it would be easily and quickly treated with antibiotics. I never go to doctors. I waited until I was really sick and getting rapidly worse.

Post Edited (Summer3) : 1/27/2012 7:48:58 PM (GMT-7)

Posted 12/31/2011 5:50 PM (GMT 0)
Unfortunately you were a victim of misinformation - there's still this widespread belief that Lyme is this simple, easily treated problem. Stinks that it takes getting it to learn what's really going on there!

A lot of us wait to go to doctors until we're really sick - don't be too hard on yourself. You're getting treated now and that's all that matters. I still procrastinate on seeing doctors for other health problems besides the Lyme - it's pretty normal to try to just live with whatever symptoms come along and hope they go away.

How long have you been in treatment? If your doctor suspects Babesia, is she currently treating it? That might be one reason for the CD57 not to go up much - usually Babesia is best treated first before the Lyme.
Posted 12/31/2011 6:05 PM (GMT 0)
I just barely started treatment. I was positive for Bb. I don't like taking medicines so I'm nervous and wanted to estimate how long I would have to take them. If I am going to have to be treated for years or it's at a very difficult stage that is not reliably treated even by antibiotics, I'd rather look into alternatives I think.

I am still hoping that there is a slim chance it is considered acute rather than chronic. I know once it's chronic it's much more difficult to get rid of.

I'm pretty sure the it's believed to be chronic/advanced stage but I'm not sure how that was determined. Was it based on the IgM, the CD57, or my symptoms? I'll have to ask next time I go. I'm waiting for the IgG to come back so I'm trying figure it out for myself using the IgM and CD57.

Post Edited (Summer3) : 1/27/2012 7:51:14 PM (GMT-7)

Posted 1/1/2012 11:11 PM (GMT 0)
To determine whether you have hit a "chronic" stage yet or not is based on symptoms and a response to the IgG portion of the tests.
I like to use Dr. Joseph Burrascano's "Advanced Topics in Lyme Disease" for this and much more information. You can download your own copy (I suggest that you do -it's full of good info!) go here:

http://betterhealthguy.com/joomla/images/stories/PDF/lymdxrx2008-october.pdf

Start on the bottom of page 19, but be sure to read page 20 as well.

You can use alternative medicine -if you chose to- to treat your infections no matter what stage you are in! I've been infected since I was 7 years old - that was over 40 years ago now! I'm using alternative medicine to treat and in only 9 months, I have experienced a remarkable improvement!! I can actually say I have some quality to my life now!!! It's just a matter of preference.
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