posted
I suspect that my 10 year old daughter may have Lyme's.
She has always had good health until 2 years ago. She started having low grade fevers that would last several days accompanied with pain in her hips when she stood, walked or crawled.
The episodes started with several weeks passing in between. It progressed to constant pain in her right hip.
At the worst her fevers were almost daily. She would get one within a half hour of waking and the fever would be gone within 4 hours.
The fevers stopped for almost 5 months, she had one that lasted 24 hrs and now has constant pain in her right big toe.
In the last 4 or so months she has developed stomach issues, complaining of stomach pain, constipation and spitting up.
She has been worked up by a orthopedist and a rheumatologist and both determined there is nothing wrong with her.
All blood work is normal (even draws done within 5 hours of a fever), xrays normal, bone scan and MRI normal.
I am hoping to find a doctor well versed in Lyme's to either confirm or rule out this disease. I understand that there are no cures for this but something needs to be done.
It's just not right for a little girl to be in constant pain, or for the docs to shrug and say "just give her ibuprofen."
Thanks for any help you can provide.
[ 25. March 2008, 12:40 AM: Message edited by: silversmom ]
Posts: 3 | From central Missouri | Registered: Mar 2008
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posted
I forgot to mention that she has had literally dozens of tick bites in her life. She seems to be slightly allergic to the ticks as her bites always got a little infected and took longer to heal than my other kids. Other than that she has had no illnesses other than 3 ear infections.
Posts: 3 | From central Missouri | Registered: Mar 2008
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bettyg
Unregistered
posted
welcome silversmom,
boy are YOU LUCKY to have ONE IN YOUR STATE!!! he's the best in the midwest!!! lucky you.
i'll send you a private message with this info. pms can be found on left side under hello and in my profile! ****************
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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
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Silversmom,
BettyG had the BEST advice possible! Make the appointment and get there ASAP.
Might also tell them you can come on a few hours notice,,if their is a late cancellation(if YOU can)
YOU will not believe the attitude and change of tone of doctors appoinment compared to what YOUR used to!!!
With a sx list such as YOUR daughter has,,,it is almost a slam dunk thats where you NEED to go!!
CANT be THAT far from you,,,compared to those that travel from AROUND the world to get there!!(NO kidding).
I am over 500 miles and was told I was a virtual neighbor compared to MOST there!!
Stick around,book mark the site here,,,read and enjoy some like company!!
WE have ALL been in your shoes!! Welcome aboard!!believes--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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posted
I just wanted to update everyone on my daughter's status.
We had to start new with basic doctors due to insurance issues. They have not discounted Lyme but they are ruling out other diseases.
She had a positive ANA test result a few weeks ago, this is the first positive test result in almost 2 years.
Her pediatric rheumatologist believes that she has Strep bacteria causing most of her problems. She did test positive for strep and we are not in the process of narrowing down the strain and confirming initial results.
We have also learned that her right leg, the one with all the hip pain, is shorter than the left. We believe this to be the primary source of the constant pain in her hip.
She is scheduled for an MRI of the hip to look for soft tissue disorders like Bursitis and Arthritis.
This is all very good news after 2 years of doctors not having any idea what might be wrong with her.
Posts: 3 | From central Missouri | Registered: Mar 2008
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posted
With all due respect, don't waste your time on ducks (=non Lyme-literate MD's)and get your daughter to the good LLMD in Missouri that people have told you about.
It took six years of going to all sorts of docs with all sorts of diagnoses before we even found out what was wrong with our son. After two years of treatment with the best pediatric Lyme doc, he is slowly getting better.
Please - RUN don't walk to Dr. C in Missouri. The longer your daughter has Lyme, the harder it is to treat!
Posts: 8992 | From Illinois | Registered: May 2006
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bettyg
Unregistered
posted
we all understand about INSURANCE ISSUES, AND "OUT OF POCKET" EXPENSES for our EXPENSIVE LYME DISEASE.
you're going to be investing in your daughter's future and ability to have gainful employment so when you get old someday; she can take care of YOU!
when i started on my lyme adventure, i went to someone local who was just LEARNING about lyme from LYME PATIENTS and accepted 1 lymies/week up to 20 max! he was a great listener; didn't rush for the door, etc. i had a terrible herx and called/emailed his office; HE NEVER CALLED BACK.
i found myself someone else out of state this time but 10 hrs. roundtrip to s. minn. vs. 20 hrs. roundtrip to s. MISSOURI as we are recommending you go.
long story short; tutu tried to pursuade me to go to dr. c; but i insisted my body couldn't take it! i found someone to go with me where i paid all her expenses.
I SHOULD HAVE GONE TO MISSOURI, and when i decide again to pursue lyme treatment; that's where i'll go. i'm working on many other health lyme related issues that minn. found.
fyi, my one leg is shorter than other too, but that is NOT a reason for pain! your daughter is young but lyme invades BONES TOO. i had to have my hip replaced last year at age 59; surgeon chipped my bone saying my bones are that of an 80 YEAR OLD WOMAN!
best wishes! we're just trying to teach you what we all learned the HARD way which should have been done YEARS EARLIER and giving us QUALITY OF LIFE vs. what we each go thru daily here.
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quote:Originally posted by hopingandpraying: With all due respect, don't waste your time on ducks (=non Lyme-literate MD's)and get your daughter to the good LLMD in Missouri that people have told you about. ----------------------------
Please - RUN don't walk to Dr. C in Missouri. The longer your daughter has Lyme, the harder it is to treat!
Agree!!!! Lyme can cause ANA's to be positive!! I had a positive ANA at one point, but after Lyme treatment it is normal!
Call dR C's office if you want the BEST treatment for your daughter!
Also, lingering strep is common with Lyme. It's an opportunistic infection because her immune system is stressed.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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