If CD57 confirms Lyme do you also need Igenex?

[FallingApart]

Hi again,

 

So, I've been reading all of your posts and trying to learn as much as I can. One person mentioned that no further testing would be needed for DD if she has confirmed Lyme. Is this accurate? The only test we did was the HNK1 Panel, the CD57.

 

DD was a 1 where the ref is 2-17 for the % test.

For the Abs test she was 34 where the ref is 60-360

 

We have no info for any of this Western Blot that everyone is referring to. Is that something that we will need? I was assuming that we will need that test, but am now wondering.

 

Also, what seems to be the percentage of moms who have Lyme when their children have it? I had this same test done on Tues and am anxiously awaiting the results. I have super wierd neuro isues that have never been explained and every test I have ever had run has been negative. INCLUDING LYME. But I don't think this test has been run before.

[dabel]

I am relatively new to the Lyme world so I hope others who have more experience will chime in. I believe that the CD57 is just a piece of the puzzle when it comes to diagnosing Lyme. Many labs do the Western Blot test you referred to but all are not same as far as accuracy goes. A lot of people here have used Igenix. We actually had our testing done at Neuro Science. In the end, from what I understand, the diagnosis is a clinical one and the labs can help support that diagnosis.

 

As far as the percentage of mother's that are positive .... I can't say the percentage but I can say that I am positive and so are three of my four children so far. We are still waiting for the labs to come back on my oldest.

[sf_mom]

For some reason I thought you had done the basic WB not via Igenex and that was positive. The basic WB is less sensitive than Igenex testing and covers less Lyme specific bands. So, my thought was if your positive with a less sensitive tests no reason to retest. Rather... head straight to an LLMD and direct further testing towards possible co-infections.

 

BUT, it looks like you only did CD57 and results are indicative of Lyme but would need further investigation. I'd still make an appointment with LLMD for further testing even for WB via Igenex.

 

Many mother's are positive but I believe there are some that are not, have not tested or have no symptoms of Lyme. Your 'super weird neuo symptoms' should definitely be checked out and you should definitely run Igenex WB on yourself. I too am positive and all three children have congenital Lyme/co-infections. One child remains serologically negative but we continue to treat based on brothers results and clinical diagnoses. We are repeating co-infections panels to look for converted result as we move forward with her treatment.

 

-Wendy

Edited February 10, 2011 by SF Mom

[MichaelTampa]

First off, don't know the age of your daughter, but Dr. J. in CT would say that people don't start really making (full production?) the HNK1 cells measured by the CD57 test until somewhere around age 13-15. I think the CD57 is a good test as part of the picture, but I would not rely on it solely. There are just too many doctors who say it is inconsistent (even though there are others that find it quite useful, and for me it has tracked my situation quite consistently).

 

An IGeneX western blot and ELISA are nice ones to get. It is always possible the LLMD would want something else, too, so sometimes it makes sense to get those done ASAP while waiting for an appointment or whatnot, but in some situations it can make sense to wait. Every doc will handle the situation a little differently.

 

My sense is, on this board, so many of the mothers who have kids dx with lyme, when they test themselves, they find they have it too. It makes a lot of sense, the kids in many cases are getting it from their mother. Probably some are really without lyme symptoms, strong enough to truly keep the lyme bug at bay, but I think the majority do have symptoms they have been explaining away via other causes, and then finally fit the pieces together over the course of time. People go about that at their own pace.