Funny moment.

[EmersonAilidh]

I left a three part episode of Mystery Diagnosis on the television few minutes ago. Then I hear my Mom going "Ailidh, rewind it!!!" She made me rewind it & watch it, talking about this girl's physical therapy & how this girl sounded "just like me". So I sat, & I watched, listening to this girl talk about her symptoms. My Mom hasn't read much about Lyme, & the look on her face when "LYME DISEASE" came across the screen was priceless. Think she'll be taking me a little more seriously now. All I could do was laugh. <3

[Suzan]

This was on yesterday morning in the hotel as we were waiting to go to the LLMD! My dd's could not believe it (me either)! I kept thinking Lyme too but I didn't say anyting because that's what I always say now and was trying not to be annoying.

 

When we were at the LLMD's office, dd9 tells the doctor about seeing the episode. She asks dd, "did you learn anything from watching it?" dd thinks and says "I learned that the lyme tests are only maybe 50% accurate so you can't count on the test." LLMD says "and probably not even that accurate".

 

Susan

[NancyD]

Emerson,

 

Do you think she might watch Dr. Ann Corson's presentation from the recent conference? Did you see that? It was really EXCELLENT! You can order it online for $20. Or maybe you can go online and find some interesting interviews about LD and PANDAS that she might watch. She may do better with a visual presentation than just reading a book or an article. Just a thought...whatever it takes to get her on board and supportive of what you are going through.

 

Did you schedule your 504 meeting? Will your Mom come to that?

 

Nancy

[EmersonAilidh]

We need a "Fast Reply" on the Lyme board!!!

 

Suzan ~ I'm really glad my Mom saw it! I think she might have been a little discouraged if she knew it was Lyme before seeing it, but I think seeing it without knowing it was Lyme helped her understand. Does that make sense at all?? She says that she knows the basics of Lyme (Bacteria gets in your system through a tick bite & screws everything up, pretty much) & that she doesn't want to know any more because the scientific parts confuse her. Can't really argue with that & I suppose it doesn't really matter at this point. They explained the problems with the blood tests a lot better than I could. & I know what you mean about thinking that everything is Lyme! I have to remind myself all too often that not everyone with a little muscle pain has a complicated infectious disease!

 

NancyD ~ I don't think she'd be willing to spend money on a presentation & I sure don't have any, haha. She's basically come out & said that she has no desire to learn the specifics of Lyme, & I'm just kind of shrugging my shoulders on that one. Don't care anymore. I'm asking for Under Our Skin for Christmas, & I know she'll watch that much. I think she'd just be too intimidated by a presentation like that to take it in well, & she sure wouldn't spend money to order it. Oh well.

 

504 is gonna get scheduled once the co/secondary infection tests come back. We figure it will look better if we're able to put Lyme, P.A.N.D.A.S. + secondary/co infections instead of just Lyme & P.A.N.D.A.S. Plus, I don't want to have to get documentation for the Lyme & P.A.N.D.A.S., & then go through it again to get the co/secondary infections. Figured it would be easier to just get it all done at once, even if it means waiting a couple weeks. I think she has to come to the 504 meeting, but chances are I'll be the one doing the talking, like at doctor's appointments. I don't mind anymore though. I'm okay with it as long as we're getting somewhere!

[cobbiemommy]

Emerson, you continually amaze me! I think our kids (including you) are very smart and just want to get better no matter what that requires. Your mom may be dealing with some guilty feelings about how she has dealt with your illness over the years. Especially from when she didn't know you had an illness. Maybe that AHA! moment from Mystery Diagnosis will open her mind just a little more. You are a tenacious young lady! Keep up the good work.

Cobbie

[philamom]

Emerson- I have an extra copy of the Ilads conference CD Rom--I'll send it to you if you pm me your address. The director accidentally shipped out two and told me to forward one to a doctor, if I would like. I think you'll have a better understanding of it than most doctors I know.