I have a 14 yoa daughter diagnosed with 8 out of 10 bands on her WB. She did 2 weeks doxycycline with an infectious disease doctor. Then they put her on IV therapy(not really sure what they gave her.
She has been complaining of headaches/ The Doctor sent her for an MRI. The Mri was read as an epithymoid cyst.
The infectious disease dr pulled her off of IV therapy because he believes all symptoms are cyst related. The neurosurgeon says its not a cyst but he will repeat the MRI to be certain. UBO?
Now The primary care and infectious disease doctor wont let her take over the counter pain pills even though they dont help with the pressure. SO I have a child not on IV therapy with chronic lymes whos in severe pain.. and two doctors who are not LLMDs.
HELP I NEED a pedatric LLMD IN OR AROUND JERSEY as well as neurologist w lymes disease knowledge! I WILL travel! My Primary care is setting up and appoinment for her to go to CHOPS but who knows when that will be.
SHould I just load her up and take her to the ER at CHOPS or do you think I am wasting my time. I'm lost and just want to get her a little relief.
[ 16. January 2008, 09:01 PM: Message edited by: waterfam ]
Posted by bettyg (Member # 6147) on :
welcome water!
please EDIT yoru post by clicking on paper/pencil icon which OPENS SUBJECT & BODY TEXT area.
show in subject line: NJ KIDS LLMD NEEDED plus show the LARGEST CITY NEAREST YOU BEFORE "NJ" ~~
you have 4 in the state; lucky you as nationwide there are only 12+ !~~
i sent you 2 private messages; 1 is my huge newbie package of info, and other tells you how to edit your text from solid post into breaking up into paragraphs. please read that one first and then you can change subject line so you get QUICKER REPLIES!
in body text at top. show the largest 4-5 cities nears you with CLOSEST being listed first ok!
we'll help you, educate you, and provide support as needed. glad you found us! Posted by improver (Member # 8380) on :
PM'ed
Posted by bettyg (Member # 6147) on :
i sent pm also
Posted by mtree (Member # 14305) on :
water.....
a great pediatric neurologist in NJ.....
she is in Neptune..... i will Pm you the name.....
let me know if you have heard of her......
mtree
Posted by jennyflyer (Member # 12792) on :
If it's Dr. P in Neptune, she treated me 19 years ago when I was first infected as a teenager. I credit her with saving my life.
That's definitely where you should take your daughter.
Posted by mtree (Member # 14305) on :
yes jen.....
Dr.P in Neptune........
my daughter was treated by her when she was about 5yrs old....then again at age 17...
daughter is 21 now.....
excellent doctor....
mtree
Posted by Lymetoo (Member # 743) on :
Just about every major hospital is worthless when it comes to helping out with Lyme disease. Don't put her through that torture unless you need to take her for pain control.
If you need more names, let me know. Looks like you received plenty of help!
Posted by lymemommy (Member # 12495) on :
Dr. P in Neptune is retiring and not taking Lyme cases anymore. She was recomended many times over to my family as well. I wish I could help with your finding a neurologist or a pediatrician, but were in the same boat. If you want the name of a LLMD in NJ that will see kids, is not a a pediatirician or a neuroligist, PM me and and I'll help you out. My son also sees an LLMD pedi-ID in NY who is excellent. According to him CHOP is not all that Lyme literate, so you may not want to explore that route. Best of luck. kp
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