2 year old w/ Lyme - looking for some answers on the different bands

[ny_momof3]

Hi, I have my daughter's Lyme results with the following bands: 18, 23, 28, 30, 39, 41, 45, 58, 66, 93

I'm wondering if any of you have some information about these bands that you can share with me. She tested positive in June. Has been treated twice. She's still presenting with severe joint pain, and other symptoms that someone so young can communicate.

Thanks

PS - our GP has referred us to a Pediatric Infectious Disease Specialist that we are currently looking for in the NY metro area withing several hours drive is OK

[jm29]

I tested positive for two bands.  My cousin's husband who is a doctor said you have to have four positive bands to have Lyme disease.  I also got tested with a CD57 which determine that I was cronic because my levels are so low.  Has anyone else had the CD57 test?  I don't hear much about that test.

[Amyloo]

Please, please check the ILADS website for a doctor referral list.  I am so sorry for your baby; hope she gets well soon.  I'll be praying for you and your family.

[JackieCalifornia]

So sorry to hear about your baby girl.  Was she tested for co-infections that sometimes come with Lyme?

I have not spoken with anyone who has been treated at Columbia U med center, but there is a Lyme group there.  I personally have mixed opinions about university-related medical research centers.

Have you checked the ILADS website for a referral?  It's at ILADS dot org.

Let us know how it goes.  

[ny_momof3]

thank you, she was diagnosed in June of this year. She responded to the first round of meds until Oct. The she presented with similar symptoms. She went through another round of meds and this time there has been not improvement and symptoms are getting more prevalent and frequent. We are seeking a Ped. I.D. Specialist in the NY metro area but willing to travel. I've heard of Hartford Children's Hospital and just left a message for them.

[wonko]

Here is an online description of the Western blot by a well-know Lyme physician:

http://www.drcharlescrist.com/testing.htm

An excerpt:

"Western blots are accomplished by breaking the Borrelia burgdorferi into pieces, and those parts of the Lyme bacteria are then embedded in a gel.  Electricity is used to push antibodies made by the immune system through the gel.  Antibodies that are made to attach to certain parts of the bacteria will bind to those exact parts that are embedded in the gel.  When the antibodies bind to the parts of the bacteria, a black band is formed, which is then interpreted as IND, +, ++ or +++ depending upon the intensity or darkness of the band.

Each part of the Lyme bacteria weighs a certain amount.  For example, the tail of the Lyme bacteria weighs 41 kilodaltons (kDa).  Think of kilodaltons like pounds, ounces or kilograms.  The numbers on a Western blot such as 23, 31, 34 or 39 refer to how much that particular part of the bacteria weighs in kilodaltons.  The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93."

****

Your daughter's test sounds very positive.  I hope she gets prompt and appropriate treatment.

[ny_momof3]

correction, she has the following bands present:

18 23 28 39 41 45 58 66