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!!
Posted by feelfit (Member # 12770) on :
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
Posted by Lymetoo (Member # 743) on :
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.
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
Posted by Beverly (Member # 1271) on :
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.
Posted by Tincup (Member # 5829) on :
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
You will get no where with the people you are seeing.. and time isn't on your side.
Good luck and please continue your search for help and be as educated as possible.
That little one is depending on you.
Posted by sometimesdilly (Member # 9982) on :
kim-
i live in MD too, have a 5 year old son with Lyme, (and have Lyme myself) and would be more than happy to help you in any way i can.
you are NOT alone.
check your PM's (privatemessages)...
dilly
Posted by bettyg (Member # 6147) on :
I sent you a pm too!
pms can be view on top left under HELLO by flashing light and in my profile! Posted by Geneal (Member # 10375) on :
My children (6 and 4) are both on zithromax for Lyme.
I don't think the amoxi will cut it.
See if your doc will give you enough zithromax to cover
Your child until you get to a LLMD.
Hang in there.
Welcome to the board.
Hugs,
Geneal
Posted by cjnelson (Member # 12928) on :
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.
Posted by Lymetoo (Member # 743) on :
I sure hope Kim comes back!!!
Posted by AliG (Member # 9734) on :
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
Posted by kim6869 (Member # 14484) on :
Thanks for all of the info I really appreciate it!!! I am going to call the LLD suggested and get her an appointment.
I am so thankful for all of the info. I thought I was loosing mind. I have been told so many things that I was not really sure what to think.
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