I had my 4 yr old daughter tested for Lyme a few months ago and no one could agree weather she had lyme or not and what her treatment should be. Her labs were tricky and she didn't have a whole lot of symptoms and some of which could be lyme or something else. I had more docs saying she had lyme over not. So I believed she had lyme since thats what I was being told, but then started to question things the more we got into it. To add to her case she has MCAD a metabolic disorder that complicated her case big time. So we decided to fly out east to the best peds lyme doc there is to get some answers. After flying out there, spending a lot of time with him and going over everything possible he said he doesnt think she has Lyme Disease!! Some other docs were jumping the gun with her. Awesome news!!! And a HUGE relief!!!!!!
I have been getting a lot of questions from a lot of people about this and why some said she had it and some didn't. It easy for me to understand it since I understand the Lyme world but it's hard to explain sometimes. I will try to do my best to answer what people have been asking below--
Diagnosing Lyme Disease is tricky, you can't just go off of labs. Her titer was high on the ELISA Test but her Western Blot Test was indeterminate. 3 bands showed up indeterminate and of those 3 none were the Lyme bands. Mine on the other hand were. The titer could be high for other reasons not just lyme so you can't just go off of that which is why the ELISA Test is crap and shouldn't be used, especially alone. He doesn't think she shows symptoms for lyme or co-infections, she is totally on track intellectuality and very smart, physically her muscle tone issues are most likely related to her MCAD and common in some MCAD kids. He has no idea what is going on with her skin so she will need to see a dermatologist. He said its not Lyme or co-infection rashes, more like eczema rashes. The only thing I can't explain is her electrodermal screening test. It said she had Lyme and Babesia like me. That's the only thing that worries me but he said those can be very tricky and sensitive and have to be set JUST right and should never be used alone to make a diagnoses. According to him they can be adjusted to get the results they are looking for. He was much more thorough than anyone else, did a full exam, a special exam, looked at labs, checked her eyes since her one turns in, checked her glasses, looked at her skin, went over her total history and mine. He is the best out there, has treated 18,000 kids and I have to trust that he is correct in his diagnoses. He is a very well educated man that knows his stuff and from mine and my husbands point of view he did the best exam and history check we have seen!!