I have some more questions

[colleendonny]

Okay some of you may have read my last post, but if not I'll rewrite the symptoms plus a few more new behaviors. It's only been a week and I just feel at my wits end.

 

I did notice a bullseye rash in my daughter in late May. Called pedi's. Nurse said it didn't sound like one and she didn't need to be seen. I trusted her. I wish I could go back to that day though!

 

So last Thursday her symptoms started: Started with her saying that she was talking with her mouth closed. i.e; repeating words in her head. Now the are more like thoughts maybe that keep being repeated or swear. Tonight it was b*tch and jerk, kill, and I hate Daddy. I'm am just sick over these words. From a 4 year old?!

 

She also said she dreamt that I burned her 2 year old brother on the head with a hot pan.

 

Today she said she was going to stick her 4 month old sister with a fork. Then said just kidding when I called her out on it.

 

Other symptoms are aggressiveness, touchy feely, jaw movements, biting her top lip, rapidly running her tongue across her teeth. I think I noticed more frequent blinking too.

But no sickness, fevers, soreness that she has told me about.

 

She keeps coming up to me saying that she can't stop repeating these bad words.

 

Her Blood lyme from the pediatrician just came back negative. I did contact IgeneX and they are sending out a sample kit. Has anyone ever done this? How does it work? What if it comes back negative....can you totally rule out LYME and /or co-infections? What are other ways to test for co-infections?

 

Could this just be an OCD?!

Could this be PANDAS/PITAND without a positive strep throat culture?

 

ANd lastly, who are the LYME doctors that you see in my area, Massachusetts? How long did it take you to get an appointment?

Thanks so much. I am so glad I found these forums. You guys are so knowledgable.

[LNN]

I sent you a PM (look in the upper right corner of your screen when you're logged in, under your screen name, you'll get a pull down menu where you can check messages).

[Suzan]

Hi, I thought I should mention, my girls both had positive vaginal strep A cultures. This lead us to our pandas diagnosis a year before learning about lyme.

 

We did the Igenex test and had our chiropractor sign the order for the test. Our local lab drew the blood and we sent it in. My dd with the most lyme sympotms had a negative test but some postitive and IND bands. My other dd and I both had positive Igenex but negative CDC test results. After 3 or so months on lyme treatment, my negative dd was retested and her test became positive. So sometimes (often?) the negative results can't be relied upon. A good LLMD would be able to look at the clinical picture and help too.

 

Susan

[LNN]

I just PMd you some additional info