9 yr old possible Lyme

Hi everyone. New member here. So here's our story and I am posting because I would love some advice and opinions.

My 9 year old daughter had flu like sypmtoms about 7 weeks ago (at the peak of flu season) and has not been feeling herself since. At first I thought it was just taking a long time to recover since it is a "bad flu season". 5 weeks later she was diagnosed with strep throat so the doctors and I thought she had been recovering from the flu overlapping with coming down with strep. Two weeks later her latest throat culture was negative and she still does not feel well and has been developing new symptoms. We had a number of lab tests done yesterday, including Lyme, at Quest Diagnostics and all the results were negative. Her doctor put in a referral at Boston Children's Rheumatology. They do have Lyme listed as one of the diseases they diagnose/treat. 2 days ago it occurred to me to check the symptoms of Lyme and when I did I was convinced she had Lyme and was going to have a positive test. I am listing her symptoms below. They come and go but lately the fatigue, headaches and traveling pain are recurring almost daily.

Fatigue, headaches, traveling pain (arms, wrists, ankles, armpit, mouth, tongue, eye), bellyaches, she feels hot often (not to the touch - this is what she complains), occasional low body temps, occasional low grade fevers (the only time she had a high fever was when she had strep), running nose, nose hurts, hurts to swallow, mouth feels rubbery.

In addition, her teacher called me last week to say that she has been exceptionally chatty in school and is missing instructions because of it. This has never been a problem for her before though she is extremely chatty at home.

She also had one incident yesterday where the dr. said she didn't have to take the antibiotic (for strep) anymore and she said "the bubblegum medicine? yay!" Then at dinnertime she went to take her antibiotic and had no recollection of the conversation at the dr office. She normally has an excellent memory so this struck me as strange.

She has missed a number of days of school because she doesn't feel well or asks to come home. She is normally an extremely high energy child and always likes to be doing something. She has missed Girl Scouts, track practice and gymnastics multiple times because of this. It is very unlike her to not want to go anywhere, especially if she has friends who will be there. So I don't think she is trying to get out of school or exaggerating her symptoms.

I don't know how long it will take to get an appointment at Boston Children's. I certainly plan to ask the rheumatologist to further explore Lyme. It just concerns me because I am aware that the sooner you get treatment, the better off you are and I have read that the tests can be unreliable.

i believe she may have had a tick on her eyelid once when we were camping. I think it was 2 summers ago but I did not think she was bit nor did she ever develop a rash. Our next door neighbors house backs up to woods where I know people frequently find ticks on them if they walk in there. I don't remember her ever complaining about these odd symptoms before she was sick 7 weeks ago. Actually, normally when she does get sick with the flu, a cold or stomach bug (which is not often - she has been unremarkable healthy up until now), she seems to always have mild symptoms that go away quickly.

Ok, Boston Children's is supposed to call within 2 days to schedule the appointment. So I guess once I see how far out it is I will pursue the LLMD concurrently. I don't know how to find one in the area but I will probably start a new thread to ask for recommendations. Thanks for the help and I'm sorry to hear that your daughter has such a hard time of it. I hope things are improving over time for her at least.

Thank you Girlie. I am not surprised by what you said about Boston Children's based on other threads I have read. And normally you would think Boston Children's provides highly reputable care. I am going to start another thread regarding find a good LLMD. Do you mind sharing whether you recommend that based on my concern that she might have lyme or based on the symptoms I listed? I am just looking for a little some confirmation of my concern from people who have been there, done that.

Also, I could add low appetite, and slight sensitivity to light to the list which I have remembered since, as well as a rash on her hands that she had while at school today (small bumps).

I had the rash with small bumps. Make sure you ask your LLMD about co-infections. Lymph node swelling and fever could be bartonella.

I'm so sorry about your doctor. PLEASE do look into the PANDAS/PANS info Girlie mentioned. I've heard of that before. It happens to kids who get strep. Very important to check into this.

You said: "does Lyme present like this sometimes, where you feel 95% like your normal self for a week or two then feel sick again? "

Absolutely!!!