Potential Lyme Newbie...Confused CD 57

Hi Gang,

First off, thank you to everyone who has posted on here. So similar to many of your stories, it has been a very long 12 months+, filled with so many different doctors visits (Neuro, ER visits, General Practice, Cardio, etc), different conditions discussed but never diagnosed (Fibro, Anxiety/Stress, Possible Depression, Possible Neuro stuff, etc) and many, many different symptoms. I had been tested with a standard Lyme Test in August 2014, and it came back negative. This made me think that it definitely couldn't be Lyme.

I came across this forum about 4 months ago and I can still remember the first time I read posts regarding symptoms and almost feeling relieved that there are others out there with such similar symptoms to mine, with such similar stories. I've had the Mental Fogs, muscle aches/tingling (particularly left sided), thumb twitches, left-sided facial tingling, muscle twitches ALL over, blurry vision, increased headaches, light sensitivities, stomach/digestion issues, sore feet (especially the right foot's heel), and nutty anxiety/emotions.


There are so many other symptoms, but I'll cut off the list there before it gets way too long (achy hip joints/neck, etc.).


For a while, I related these symptoms to a really stressful year. Prior to everything starting up, I had very few medical issues, very healthy, and very active (I'm in my late 20's). When the symptoms first started, I felt like I hit a brick wall and couldn't get myself together.


Long story short - after seeing so many doctors, not shaking the symptoms and being told to sit tight and to wait to see how the symptoms progress, I started doing more research and came across this forum. After reading so many of your posts (thank you!), I made an appointment with a LLMD and talking with her, she said I sound like a classic case. I had all types of blood-work done with her earlier in the summer.


I meet with her next week to discuss the results of the majority of the tests, but I did get one test back (still have not discussed it with her, so I'm sure I'll have a better understanding next week). The LabCorp for Abs CD8-CD57+ - It came back in the low 30's.


I've been looking online and have found very conflicting information regarding the CD57's actual validity and just wanted to check in with you guys to see if anyone else had similar results? I've read about results <60 generally indicate Lyme+, but I've also read that the test is not always reliable, so it cannot be used to diagnose alone?


Again, I'm sure I'll know more in a week, but thought I'd say hi and see if anyone else had a similar CD57 study. Thank you again for all of the posts on here and for sharing your stories/strategies/hope. Not that I want to be Lyme+, but at the same time, I'm hoping to finally find out, so I can begin to move forward and maybe even start to feel a bit better.


Thanks again everyone!

Good morning! You are correct - the test is not always reliable. My CD57 when I was first diagnosed with Lyme was 28. Now it is 42 and I have been off ABX for over a year. It is still low.
Now my daughter who is now six was born with Lyme and we had her tested when she was 3 and her CD57 was 52 and now at age six it's 112. She has been off ABX for also a year.
Not sure if this helps at all because I never put much stock in this test but I guess it is interesting to know the numbers.

hi notymeforlyme - welcome to the forum.

CD57 is from my experience, not very reliable.

my case is a perfect example. After I healed from lyme, it went down. The same thing happened to my daughter

compliment c4A is a better marker, because it reflects the amount of inflammation in your body due to infection. Mine was in the 800s when I was first sick, and then it went down in the 500's. Some people who are extremely sick and have been sick with lyme for a long time, their numbers can be in the thousands.

labcorp is not a very reliable blood test source. if your lyme test comes back negative, please consider either stonybrook (if you live in ny) or Igenex, which everyone says is the best!

keep the quesitons coming!

lymepickle - i didnt know this?? my older daughter's cd57 is lower now than it was when she was sick, and this really concerns me......thanks for this info, bc i was going to email the pediatric lyme dr about this anyway

yes, that last statement makes perfect sense, because my daughter is obviously not sick anymore. and are you saying that band 41 only can mean bartonella only and not lyme at all?? thanks! this may answer one of the mysteries i have been pondering for a while.....

NoTymeForLyme-

As others said, cd57 is unreliable. You can goggle it, there are MANY things that can cause low cd57, maybe even autoimmune.

After a year on ABX, my cd57 was still 30-35, but C4A and C3a are now great.

did you have any lyme bands at all? what lab did you use? it is important to remember that the bloodwork isn't always accurate, so you can have lyme even if it comes back negative. I dont know the answer to your question about having babesia without lyme, but i would sure like to know the answer myself!!

Well, your doc is right that the Babesia could be hiding the Lyme infection. Band 93 is specific for Lyme, so you do have it, as Lyme is the only thing that can get a response on a Lyme specific band.

When we have more than one infection, the bacterial load of one infection can be high enough to be a dominant infection - and it can keep the symptoms of the other infections at bay, although they will come out more as the bacterial load of the dominant infection lowers. It can also prevent us from testing positive on a serology test.

I didn't have any symptoms that really pointed to Babesia, until I was most of the way through my Lyme and Bart treatments, then the Babesia symptoms came roaring to the front of the pack!! Suddenly I had almost all the Babesia symptoms, I couldn't wait to finish Lyme and Bart treatments so I could start treating the Babesia!!

Back to the testing - of course, this is not mentioning that the ELISA is the worst test we have for Lyme disease as it misses up to 70% of those that actually have a Lyme infection!!

Seeing as you have bands to report though, it's likely you had the Western Blot done also. At least it catches about 50% of those that actually have a Lyme infection.

I would say if you trust your LLMD's opinion in which infections you have, then I would go with getting treatments started. Although, testing can be very useful, if you test positive for any infections.

I too tired testing when I was first diagnosed, but I had been infected so long that I was making no antibodies to these infections, so my testing was all false negative until after I had had a year of treatment. So when I got reinfected last summer I skipped testing and just started treatment, as I knew that if I herxed it was a sure indicator of my infection - and I was right, I herxed.

I'm so glad you find this community to be supportive. Thank you for those kind words directed at me, we do like having a community that cares about each other and openly shares information and suggestions, than just another message board.

Please do let us know how we can be of help, or if you need a shoulder to lean on.

Actually, that only happens for some Lyme patients. Some that are incredibly ill will have very high CD57 readings and some that don't experience many symptoms at all will have a very low CD57 reading.

So while it works that way for some, not all respond that way. They just don't know what all goes into determining what they CD 57 reading is impacted by.

Another good article on the CD57 is this one:
www.researchednutritionals.com/information.cfm?id=200