Before I hit her up with LD info, I'd like to know if anyone knows their official posiiton on LD/TBDs, or what their reputation is. Thanks.
 

Minou....

I am not from PA.. so I am not sure who is what or what is what.

I do know there is a duck motel .. University of PA.. big time duck place. Bad bad ducks.

If you can find out if the childrens hospital is a part of them... and they are... I would not have much hope.

However.. I don't want to discourage anyone from trying to take a bite out of the quackers butts.. so do try. Just be aware you might get crushed by big old webbed feet!

Ok?

she didn't get treatment. then her knee swelled up. grades dropped. started having problems. once athletic girl who also did well academically. went to CHOP. dr juumped known thier throats at mention of lyme. ridiculed tht they suspected that from what they learned on the internet. was dx with the more rare juvinile rhuematiod arthritis and given strong pain meds. 16 yr old girl.

continued to have problems. useless lyme tests done. neg. no lyme! juvinlie rhuematiod arthritis. problems increased. more strong pain meds and other meds. grades dropped. life affected.

brother passed on info about what happened to me. said on several occasions that she wanted to talk to me. never heard from her.

the mom is content to accept CHOP drs dx as juvinile rhuematiod arhritis despite photo of her with suspisious rash that her friends also had and were treated for it as lyme and now fine. i think the drs just behaved so "all knowing" and intimdating to the mother, and the mom has so much to deal with , with daily life, she just gave up and was content to concede to thier dx of the relatively rare (although, what with all those adverts for diseases that could also be lyme, seems we are being conditioned to believe these "rare" disesases aren't so rare.

except lyme. which is still rare. 'til they come out with the next vaccine for lyme.

what with her symptoms, it sounds so suspitiously lyme and the inaccuracies of the test that the CHOP dr is using as gospel and no concern about the coinfections that could also cause problems

other case. talking to some kids who work at local healthfood store about what happened to me. teenage girl who lives in newtown, pa told me she had lyme disease and went to CHOP and got dx and treated. told me she got 6 wks treatment ( or maybe only 4 - can't remember exactly, just what is considered standard care and no thought to the common coinfections), but now as a result of lyme has "fibromyalgia".

even after i told her my story, how i got it so often it turned out we unwittingly took photos of me with textbook rash i did not know i had until recently. how i was told by upenn ducks when i was about to die from lyme/coinfections and had lots of serious neuro and cardiac symptoms that i had an "incurable" disease called "fibromyalgia".

looking very tired and admitting she suffered from exhaustion and had put on a lot of weight, said she was doing "OK" with the "fibromyagia" now. sad.

can't think of any other cases right off, but CHOP isn't much better than UPENN.

[This message has been edited by Caryn (edited 04 November 2004).]

[This message has been edited by Caryn (edited 10 November 2004).]
 

Caryn, thanks for the info. I'll have to think of how to approach this.

[This message has been edited by minoucat (edited 04 November 2004).]
 

Stay away
 

They did 80 billion tests on me (not lyme though)

after 2 years the only explinations I got from them were....

growing pains, stress, I drank to much iceT, i was faking, and i caused all my symptoms...

the last time I went I was in tears and swore off drs. ....

After this I didn't goto a dr.for my lyme symptoms until i was 23 and having days I couldnt get out of bed.

Of course this was a long time ago... but this was my experience.

best wishes
 

I hope their doctors become lyme literate very very soon, for our children's sake.