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Please help me decipher.

 

DS9 has positive urine DOT BLOT after provocation in January, so I know he has an active lyme infection.

 

However, when I check his symptoms against all the Lyme lists, he doesn't have that many. I am going to list them, and hope you guys will tell me if/where they overlap with your kids symptoms and what your LLMDs say. Do you think these scream lyme, suggest lyme, or may be not very related to lyme? Thanks.

 

1) moderate light and sound sensitivity

 

2) high anxiety for a couple of specific situations: traffic in parking lots, dark staircases, some corners of buildings

 

3) he used to have a LOT of tics, but they seem to have gone away. Instead, he has complicated motor compulsions, that are triggered by specific events, such as hearing a high-pitched s sound. He also has a couple of checking rituals -- checking for the right page number three or four times when turning the pages in his math book, for instance, or checking the right position when putting on headphones that are marked Left and Right.

 

4) Some difficulty telling about events that are important to him -- it is often as though he speaks in individual sentences instead of fluid paragraphs. A lot of backing up and repeating, and these little hiccuppy sounds in between a lot of phrases.

 

5) Poor handwriting (getting better), poor spelling (lack of study, I think), and used to have very poor computation skills but tutoring has brought him to the top of his class, so that may have been plain old regular lack of motivation.

 

I think that's pretty much it. He can focus on school tasks for hours and he is doing well in school. Can and does go everywhere. Participates actively in martial arts (no lack of energy).

 

I would really appreciate any feedback. I know that so many kids (and adults) are hit so hard with this disease -- is it possible to have Lyme mildly, and if so, will the LLMDs still accept him as a patient?

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However, when I check his symptoms against all the Lyme lists, he doesn't have that many.

 

 

lfran -- i'm sorry i can't remember your ds's strep situation, in addition to lyme.

 

i'll just tell you our situation. my ds had pretty classic pandas -- 'sudden' onset, high titiers, positive throat culture, 100% remission with keflex. however, he relapsed and couldn't get back to 100%. he had pretty classic neurological pandas -- not really any symptoms that aren't typical pandas -- no 'typical' lyme such as joint pain, etc. he was completely non-reactive on a lab corp western blot. a friend was a little bug in my ear about lyme even though my attitude was "thank you very much, my kid has strep issues". so,after further looking into lyme, i still didn't think he had it but he wasn't getting to 100%. after a horrible school conference, further justifying that he was not healing, i asked our dr at tthe time if we should revisit lyme. he referred us to our current integrative MD.

 

i wrote out a complete history for our first appt with new dr. he has some extensive paperwork also to get info. after looking over and discussing everything, he said, 'i'd say based on these symptoms, he very well could have lyme'. he does a type of ART testing and ds tested for trouble with lyme, strep and some other infections.

 

i don't believe ds had neurological lyme -- i believe the symtpoms we saw were due to a strep interaction. however, was the lyme a 'stealth' infection that was affecting his body without us seeing overt symptoms, allowing the strep to be the straw on the camel's back? if we hadn't discovered pandas and tried to treat him behaviorally, would he have developed more typical lyme symptoms over time?

 

where do you live and what LLMD are you considering? i think most of them know much about lyme but also look at the body in general and see what issues need to be treated. i think since you know he has lyme, you need someone who really knows lyme to consider what treatment path to follow.

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Please help me decipher.

 

DS9 has positive urine DOT BLOT after provocation in January, so I know he has an active lyme infection.

 

However, when I check his symptoms against all the Lyme lists, he doesn't have that many. I am going to list them, and hope you guys will tell me if/where they overlap with your kids symptoms and what your LLMDs say. Do you think these scream lyme, suggest lyme, or may be not very related to lyme? Thanks.

 

There is no one "typical" set of symptoms for Lyme and your child certainly has a number of them especially light and sound sensitivity and anxiety but it could also be bartonella which has those symptoms. All three of mine had Lyme in varying degrees-one was very sick w bells palsy and then he had aches and pains. One had almost no symptoms but he had hip pain briefly and seemed tired so we treated and those symptoms went away. My third child had light symptoms too-she seemed tired and had air hunger. She also had something that only dr j would see-she moved her entire face when she closed her eye. Not something I would have noticed. It went away w Lyme-babesia treatment. I would say there are symptoms that only a dr j would see, there are symptoms that your child might not mention (my kids did not mention headaches) and all you need is one symptom to have a problem.

 

1) moderate light and sound sensitivity

 

2) high anxiety for a couple of specific situations: traffic in parking lots, dark staircases, some corners of buildings

 

3) he used to have a LOT of tics, but they seem to have gone away. Instead, he has complicated motor compulsions, that are triggered by specific events, such as hearing a high-pitched s sound. He also has a couple of checking rituals -- checking for the right page number three or four times when turning the pages in his math book, for instance, or checking the right position when putting on headphones that are marked Left and Right.

 

4) Some difficulty telling about events that are important to him -- it is often as though he speaks in individual sentences instead of fluid paragraphs. A lot of backing up and repeating, and these little hiccuppy sounds in between a lot of phrases.

 

5) Poor handwriting (getting better), poor spelling (lack of study, I think), and used to have very poor computation skills but tutoring has brought him to the top of his class, so that may have been plain old regular lack of motivation.

 

I think that's pretty much it. He can focus on school tasks for hours and he is doing well in school. Can and does go everywhere. Participates actively in martial arts (no lack of energy).

 

I would really appreciate any feedback. I know that so many kids (and adults) are hit so hard with this disease -- is it possible to have Lyme mildly, and if so, will the LLMDs still accept him as a patient?

 

Yea a llmd will take him ABSOLUTELY! Sounds like bartonella may be involved too. Kids don't always tell you their symptoms-I know firsthand because my kids often did not mention headaches. Kids don't have perspective as adults do about what is normal. There are symptoms you might not recognize too. Dr j noticed something about how my daughter blinked her eye and had her put back on antibiotics. Her only other symptom was difficulty waking up in the am. These things can be very subtle but better to treat while it's mild than to wait until it is really bad. Keep in mind u only need one symptom and there is NO "typical" Lyme presentation. The dot blot is significant.

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Our son is also classic PANDAS with sudden-on set and elevated titers. I thought his symptoms of Lyme were minimal until I read some of Dr. Ann Corson stuff on pediatric Lyme. I will also add that since treating for Lyme he has less PANDAS symptoms (TICS and OCD) and more classic Lyme symptoms crop up due to herx.... complaints of joint pain..

 

-Wendy

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