Hello, my 16 yr old daughter has been suffering 'weird' symptoms since about 7th grade. It started (from what we remember) as terrible terrible headaches. I assumed at the time that it must be because she was starting her period and her body was throwing her hormones out of whack. Over the last few years, lots of other symptoms have occurred - coming and going. She is always tired. I have taken her to different doctors, and have said a 16 yr old girl should not be coming home from school and crawling into bed.
FINALLY, a few weeks ago she got what appeared to be an upper respritory infection, and after three visits, the PCP said we know something is going on with her and I think its time we tried to really figure out what it is. He ran every blood test he could think of. He was sure it was something like Lupus, but said that a close relative of his had suffered from weird symptoms for two years and finally been diagnosed with Lyme. So, he said lets also test for Lyme just to be sure.
He called me today to tell me that she is positive for Lyme. He said something about the level of antibodies telling him that shes had it a while. My guess is that when she started with the headaches in 7th grade is when the Lyme must have been contracted.
He admitted he doesnt know much about Lyme and had to do some research before calling me. He said we should try 28 days of Doxycycline, 100 mg two times a day. Then to come back and see him when we finish the antibiotics.
I like this doctor, and he obviously is trying to help her, but I am concerned that maybe I should look for a specialist - especially since this has been going on so long.
I have spent the day on the internet trying read everything I can on Lyme Disease, and found my way to this site. My head is swimming. I just want to make my daughter better, and let her lead a normal life. I feel like she has already been robbed of her teenaged years with all these weird symptoms. And after I found a symptom list, I can't believe it took so long to figure this out! And the guilt I feel for allowing this to go on so long without pushing harder for a diagnosis is weighing on me. I can't even tell you how many times she complained and I told her to toughen up, take an advil and go to school. When all along, she really was suffering from something real.
I would love to hear any suggestions anyone has so I can weigh out what I need to do. We are in Aurora IL, which is one hour west of downtown Chicago. Should I give her regular doctor a chance to try to treat this (from what I am reading, this dosage he prescribed doesnt sound high enough)or should I seek out someone who really knows Lyme Disease right away?
Also, I keep reading about this 'herxing", does she need to be prepared to get worse before she gets better?
One other thing, she was diagnosed with Osteopenia about two years ago. After she fractured two growth plates at different times, and ended up with 17 cavities I pushed the doctor at the time and said that can't be normal. He ordered a dexascan which showed the Osteopenia and the fractures and cavities were attributed to the osteopenia. The doctor told me today that he doesnt think the Lyme and the Osteopenia is related (or wasnt able to find any information supporting that). Does anyone know differently?
Thanks in advance for taking the time to read this, and for any advice you may dispense.
Posted by bettyg (Member # 6147) on :
first, i'm going to send you a private message with the BEST MIDWEST LLMD who treats kids too!!! you can find pms on the left under hello and in my profile!!
4 weeks of antibiotics is NOT enough!! Since she's had lyme this many years, it's going to take abx/antibiotics and supplements, etc. to help get her into remission!! Some are on meds for YEARS!!
don't deal with infectious drs; they kill us since they do NOT believe in CHRONIC LYME and will not treat OVER 30 DAYS.
Yes, herxing will cause her to hit ROCK BOTTOM as it kills the spirochetes all over her body...everywhere!
lyme affects the bones; it has me too!!! i'll let others comment... Bettyg
welcome misika! so glad you found us; we have an OVERWHELMING AMOUNT OF ACCURATE INFO FOR YOU!!
WELCOME, would you like a copy of my newbie package of 112 pages info galore includes TREEPATROL'S LINK of his archive of over 1000 links of good lyme info?
I've been completely REORGANIZING it; NOT DONE YET; but up to page 60 of 112 pages since I have now created a TABLE OF CONTENTS WITHOUT PAGE NUMBERS since it changes DAILY!
also, please go to TREEPATROL'S NEWBIE INFO IN MEDICAL; at top being features; mark it as a favorite! over 1000 links of good lyme info. He/I have some duplicates.
most of mine is very DETAILED info on certain thigns: SSDI/ss diability insurance benefits; FINANCIAL BURDENS; about IGENEX blood testing, symptoms lists for the basic types, NOIR, no infrared SUNGLASSES, etc. and how to use this board!
if yes, please send me a PM, PRIVATE MESSAGE, it's 2 people standing together icon asking me to send it to you. i will send within 1 day of receipt of your pm; thanks
Posted by bettyg (Member # 6147) on :
i forgot to say what a great, detailed note you wrote and thanks for breaking it up so we neuro lymies can read and comprehend it!!! Posted by Lymetoo (Member # 743) on :
RUN, don't walk to this doctor!!!
***(first, i'm going to send you a private message with the BEST MIDWEST LLMD who treats kids too!!! )***
There aren't any good LLMD's in Illinois. You will have to travel somewhere and it may as well be MO.
Hi I live in Lake Villa IL...Sorta close to you. I only see my Family Doctor who is great about treating me with lyme.
Did you try Marshfield Hospital in wisc. They are great so I've heard, that is where my doctor is sending me. Google them as you can call them and speak to them regarding lyme. For me its about a 5 hour drive...
Julie
Posted by misika (Member # 15020) on :
Thanks to all. I will investigate all the information that you all have given me.
Posted by pj1954 (Member # 11722) on :
springfiled mo is the best in the midwest. I have not found anyone in illinois and dont bother with the poser in schaumburg ill all you will get is a ton of spam in your inbox.
springfield mo is my doctor.
Posted by bettyg (Member # 6147) on :
sending you 1 more name... Posted by CherylSue (Member # 13077) on :
I live in Chicagoland, and my LLMD is in Springfield, MO. It's about a 7 1/2 hour drive, but there is an aiport there is you wanted to fly.
CherylSue
Posted by Munch (Member # 11323) on :
I see Dr C too. Great doctor. You won't be disappointed. He reads and listens to everything you fill out or say.
After a trip to Phoenix in Jan. 2008, where I came home sick, Dr C was the only doc to figure out my symptoms. I caught Valley Fever on this vacation.
After being sick for 2 months, I started treatment for it and am feeling better. The cough I had for 2 months finally started to clear up.
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