Saw LLMD yesterday........

[Dedee]

We made the long awaited trip to the LLMD yesterday. It was a 5 hour trip one way. We had appointments for two of the children but we ended up "working in" the third one while we were there. Our history is that we have 3 children with PANS. All 3 in different stages. The oldest is the most stable, he has had it for 10 years and does pretty well but still a few residual eating issues and some mood swings. My 13 & 8 yr old kids are still in recovery mode with the youngest being the most challenging. Both of the younger ones have had Myco p and my daughter (8)can't seem to get rid of it. I had tested the younger ones for Lyme and both came back border line with a few lyme specific bands showing Ind. My daughter's test being more indicative than my son's but both suspecious. So since we really weren't getting complete resolution of symptoms after over a year of treatment, I made an appointment several months ago for the LLMD.

 

Long story a little shorter, the LLMD said she believed, considering the history, and the test results that we are most likely dealing with Lyme. She was more sure in my daughter's case but highly suspicious for both boys as well. We will be starting combination antibiotic treatment and hoping to see some results. My oldest son who is 16 didn't have an appointment and did not have any labs done at all. I just asked her to look at his "stretch marks" to get an opinion as to whether they were true "stretch marks" or possibly bartonella markings. Without him even being a patient, she took his shirt off and did a thorough exam and said we should make an appointment for him also. When she had finished with the other two, I asked if she could go ahead and see my older one the same day since we had traveled 5 hours and we had finished a little early with the others and she agreed. So now we will be treating all three and hoping for some final resolution of these PANS symptoms.

 

She talked quite a bit about a link between PANS children and Lyme. Said they really aren't sure what the link is yet but it's becoming more and more clear that there is a link. She said she thinks that either the PANDAS makes them more prone to contracting tick borne illness or that having a chronic tick borne illness may increase the likely hood of a neurologic reaction to strep.....not sure, just something that some doctor's are speculating.

 

Anyway, not sure how I feel about it all. I am hopeful we can get to the bottom of things. We talked some about the MTHFR mutation that all my kids have and the KPU but honestly she knew just about as much about it as I already did. She thought she had a KPU protocol somewhere from a conference she had attended and promised to look it up. I was a little disappointed that I didn't get a little more guidance in that direction. Seems there are so few doctor's who really know what to tell you about all that. But overall I really liked her and thought it was worth the trip. It was definately worth taking my husband so he could hear it all from an expert. We have a follow up phone consult in November. Keeping my fingers crossed.......

 

Dedee

[Suzan]

Wow, great appointment. I agree that it is all overwhelming. Regarding the KPU, my LLMD didn't know much about it initially either but did the resarch and agreed to treat. She was amazed at the improvement in my dd with her treatment. So hopefully your LLMD will do the same!

 

Since my girls have congential lyme, I tend to think the lyme causes PANS/PANDAS but either way there sure is a connection. Good luck with your treatment and I hope you have smooth road to recovery!

 

Susan