9 yr old possible Lyme

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concernedmom9
New Member


Date Joined Mar 2018
Total Posts : 8
   Posted 3/20/2018 11:15 AM (GMT -6)   
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.

Runninheid
Regular Member


Date Joined Sep 2017
Total Posts : 52
   Posted 3/20/2018 11:29 AM (GMT -6)   
Hello and welcome!

I'm sorry your daughter feels so yucky!

My 10 year old daughter was diagnosed with Lyme and coinfections in August 2017. She had symptoms since she was 3 or 4, but we knew nothing of Lyme, so we chalked it all up to growing and personality. We let things linger, and now our daughter is experiencing chronic and persistent Lyme. That said, it is a very good thing you are looking into the possibility now for your daughter, as time really can make a big difference.

Has your daughter been bit by ticks or fleas?
Can you remember ever noticing symptoms prior to the recent ones?
DX Borrelia, Babesia, Bartonella and Ehrlichia June 2017.
Symptoms since at least 2007.
Started treatment June 2017
-Artemisinin, A BART, A BAB, Biaxin, Chlorella, Liposomal Glutathione, Magnesium, Omnicef, Prothrivers Wellbrain, Tindazole, Tranquility, Uplift, Fish Oil, B Vitamins, Vitamin D, gluten free, sugar free, dairy free, lemon water, detox tea, coffee enemas.
30%-60% Healed

concernedmom9
New Member


Date Joined Mar 2018
Total Posts : 8
   Posted 3/20/2018 11:36 AM (GMT -6)   
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.

Runninheid
Regular Member


Date Joined Sep 2017
Total Posts : 52
   Posted 3/20/2018 12:18 PM (GMT -6)   
Well that may be good news. Perhaps indicating that this all is very recent.

If you do think it is Lyme, I suggest finding a Lyme literate doctor as soon as possible. Maybe even find someone else that could see your daughter sooner if Boston Children's is too full. Often an LLMD will give a quick clinical diagnosis and begin acute treatment asap.

I've seen first hand from friends with children who have acute Lyme, some experience complete resolution after a basic few months of antibiotics as prescribed by an LLMD. Chronic situations on the other hand....that's another story. Either way a good LLMD should be able to steer you right. Are there any alternatives in your area?

concernedmom9
New Member


Date Joined Mar 2018
Total Posts : 8
   Posted 3/20/2018 1:16 PM (GMT -6)   
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.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33895
   Posted 3/20/2018 1:21 PM (GMT -6)   
Hi concernedmom9 - welcome!


It's a good idea to pursue the LLMD. I wouldn't expect too much from Boston Children's....so be prepared for that. Even if they do diagnose her with lyme...the treatment would not be long enough, or right combos of abx...and they would most likely not treat co-infections.

Do start a new thread for recs (LLMD) for your daughter.

I can also look at my lists...you can email me if you want some names...(although members' recommendations are best).
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

concernedmom9
New Member


Date Joined Mar 2018
Total Posts : 8
   Posted 3/20/2018 4:53 PM (GMT -6)   
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).

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33895
   Posted 3/20/2018 5:02 PM (GMT -6)   
concernedmom9 said...
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).


Yes, I do think it’s probable - she has multi-systemic symptoms..
also wanted to mention that Strep is linked to Lyme (and coinfections bartonella) and Pans/Pandas with children

Here’s a link to a thread about it

/www.healingwell.com/community/default.aspx?f=30&m=3911412
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Post Edited (Girlie) : 3/20/2018 4:06:03 PM (GMT-6)


Notime4lyme
Regular Member


Date Joined Dec 2017
Total Posts : 386
   Posted 3/20/2018 5:36 PM (GMT -6)   
I had the rash with small bumps. Make sure you ask your LLMD about co-infections. Lymph node swelling and fever could be bartonella.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33895
   Posted 3/20/2018 5:49 PM (GMT -6)   
Notime4lyme said...
I had the rash with small bumps. Make sure you ask your LLMD about co-infections. Lymph node swelling and fever could be bartonella.


Any LLMD should know about co-infections.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2025
   Posted 3/20/2018 7:55 PM (GMT -6)   
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.

concernedmom9
New Member


Date Joined Mar 2018
Total Posts : 8
   Posted 4/3/2018 8:54 PM (GMT -6)   
Ok, not sure if any of you will be notified about a new reply. If I don't get any responses I will start a new thread. So I had scheduled an appointment with my daughter at a Lyme clinic and also with Boston Children's rheumotology. Meanwhile, all of her symptoms started to go away. She was left with just the headaches and fatigue but then the headaches went away and eventually the fatigue. For the last week she was able to participate in all of her after school activities and had almost no complaints. She did say her chest was hurting and left gymnastics early. Otherwise, didn't even say she was tired. So her LLMD appointment was supposed to be today and I went ahead and canceled it late last week thinking maybe she just had another infection on top of the strep that she finally beat. Well, today she started complaining about a sore throat and had a low grade fever and went to bed an hour early of her own accord. I think the strep throat may be back. Strep throat or not, does Lyme present like this sometimes, where you feel 95% like your normal self for a week or two then feel sick again? I keep wavering back and forth between thinking she has Lyme and that I am completely overreacting.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2025
   Posted 4/3/2018 9:37 PM (GMT -6)   
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!!!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33895
   Posted 4/3/2018 10:38 PM (GMT -6)   
Before I finished reading your post I was planning on saying that the symptoms can come and go/wax and wane.

As WBF said “absolutely”

I would make another appt with the LLMD - and make notes on her symptoms so you can bring to the appt.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi
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