Thank you both! I was a bit disappointed because I asked the LLMD if we could have him write the diagnosis down and describe how it may affect my daughter at school so we could have a doctor's note for accommodations that she may need. His reply was "most people don't like the Lyme diagnosis." I understand that but it just makes me feel less secure that he would not put it on paper.
The Igenix result was "IND" for IgM and Negative for IgG so I know that mainstream doctors would likely not even consider the diagnosis.
I guess I'm just worried a about how to work with her pediatrician (if needed) and her school if we don't have a written diagnosis.
I'm happy with the treatment plan in place and just for the fact that we have some answers (she was misdiagnosed with a psychological disorder in March by our local children's hospital and she has been suffering for 10 months).
I just worry now about getting caught up in the controversy of Lyme disease because her lab results are not CDC-level certified and the LLMD is hesitant to put the diagnosis in writing.
He obviously believes it to be Lyme disease- is it typical of LLMDs to be so hesitant because of the controversy?
(I did read that some LLMDs consider 1 specific band as a positive confirmation of Lyme disease- especially with clinical history and symptoms, especially band 18, for which she is positive.) - I feel very sure that she has Lyme Disease- I guess I want to know how her results compare to others who know they have Lyme Disease.
The doctor's response to the school note just makes me feel a little insecure. Sorry for rambling on!
OH - I remember the psychological diagnosis, poor girl. That made me so furious. I am so very relieved that you are making progress with a more accurate diagnosis. You're such a good mom--this has to be difficult for you but you are moving in the right direction.
Your LLMD might actually be trying to help you with a diagnosis that might be less likely to cause any hesitancy from her primary MD, the school nurse, administration and anyone else including the insurance company. Sometimes MDs can be coy for other reasons, but this might actually work in your favor because many will find a more complex descript
ion of your son's issues more seriously than simply "Lyme".
In most other circumstances, you should feel encouraged to ask/find out/pressure MDs for information and facts. But in this case, if you can read info into his other actions, etc. it might be something better left out of the conversation so he's not forced to say something he feels he could get in trouble for. Trust your gut.