posted
I live in Maryland and have an 8 year old daughter that was diagnosed with Lyme's in December. Her pediatrician put her on AMOX for 2 months and said she would be fine. Well we have 2 days of AMOX let and she is worse. The pediatrician said they don't know what else to do so they told me to take her to CHildren's Hospital Center in DC to see someone in Infectious Disease.
I went yesterday the Dr. I saw said she does not think she she has Lyme's and ordered about 100 blood tests and refused to re-test for Lyme's. The Western Blot test that was originally done says her result was 2.20 which is high but she said that does not mean anything.
So as of tomorrow evening she is off antibiotics and is supposed to go back to school in February. Her knees hurt so bad some days she can barley walk. I have friends that have mentioned what Dr.s to got to but I really don't know what to do.
Recently she has gone from sleeping all of the time to not sleeping at all. She has started to complain about chest pain and has really bad head aches ans neck pain.
If anyone that has any thought of how I should proceed to get her better please send me your thoughts.
I really don't know what to do!!
-------------------- Thanks,
KIM Posts: 13 | From MD | Registered: Jan 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Kim,
Go to a Lyme Literate Doctor right away... do not delay! The doctors that you are dealing with now do not and will not see what is right before their eyes.
The longer you wait to find a LLMD for your daughter, the tougher the disease will become to treat.
Run, don't walk. It's very simple really.
Now you know what to do. Go to the Doctor section and post for someone in your area, or if your friends know of a Lyme Literate Doctor, high tail it to them.
Good Luck
Posts: 3975 | From usa | Registered: Aug 2007
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posted
Believe it or not, infectious disease "doctors" are the WORST at treating lyme disease. They [as you have found] will ignore it even when it is right in their faces.
Go straight to GO and find a REAL doctor who will treat your daughter until she is WELL!!!
I will send you some info on drs by a private message.
posted
Kim6869..I'm sorry for what you are going through....you need right away an LLMD for your daughter....
Please Kim these are the stories Connecticut Attorney General Blumenthal would like to hear.
He opened an investigation to the IDSA, Infectious Disease Society of America because of cases like yours. If you saw an Infectious Disease specialist ID, with a positive WB and on top of that your kid still have lyme symptoms and left untreated, you need to contact him ASAP.
Stories like you are thousands. Please contact him.
You can Private message me 24/7
Posts: 983 | From The sky | Registered: Feb 2005
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hello Kim,
So sorry for what you and your daughter are going through. Ditto to the above advise... to get to a LLMD as soon as possible and talk to the AG in CT.
My son also has lyme and was re-infected in 2001, we took him to see Dr. J in CT and now he is doing very well. Children respond well to abx and usually get better faster than adults do.
Hang in there Mom, and please keep us updated.
Posts: 6641 | From Michigan | Registered: Jun 2001
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
So sorry to hear about your little girl.
And also sorry to hear you had to experience the idiots at that hospital. They are some of the worst.. and I've seen nightmares coming from that place.
If you would like the name of a doctor to see... please email me at
posted
So glad you found this site Kim....you are not alone and I promise if you follow the advice of these people given already your daughter has a great chance of getting better.
The right dr is the key for sure. It is not an easy road and there is typically no easy, quick fix. We all so wish there was.
In the hard times, and yes they will continue to come, use the board as a the tool it is meant to be - SUPPORT!
You are never alone and wont ever be alone through this.
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Did the Pediatrician or the Hospital run any tests for possible coinfections?
Was here diagnosis made through a known tick bite?
It is very possible that she may have a coinfection which could impede her fighting Lyme.
She needs to be tested for Babesiosis, Ehrlichiosis/Anaplasmosis, Bartonella among other things. (In my non-professional opinion)
A Lyme-Literate doctor would know what else to look for in your area.
I'm sure that any information sometimesdilly PMd you would be very helpful to your situation.
I would definitely ask the Ped for more antibiotics to hold her until she can be seen by a doctor who would be able to help her.
I would also recommend that you give her probiotics 2-3 hours away from the antibiotics, if you are not already doing so.
I'll keep you & your daughter in my thoughts & prayers. I hope you can get the help you need.
Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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