ew here. Given your experience, can you help diagnose?

[maybaby]

Hi. Given your experiences and expertise, I’d like your help re: my daughter’s diagnosis. She was colicky at birth and always anxious/impulsive. At age 6, she was diagnosed with ADHD. She has always demonstrated anxiety, some OCD traits (picking her nails when nervous, claps her hands while eating b/c she doesn’t like to eat, coughs while learning from sports coaches, etc.), physical impulsivity, and moodiness. I can’t recall a time when a sudden onset of the symptoms appeared. She has a limited appetite and is in the 2nd percentile on the growth charts (52 lbs at 9 1/2 yrs). She just doesn’t like to eat and gets overwhelmed looking at food. She has occasional bedwetting and still has infrequent poop/urine accidents. Over the past 2 years, we tried every type of ADHD medication at the lowest does and they all failed miserably (she was either too zombied or it made her very anxious). We even tried an SSRI and she had a developed scary serotonin syndrome. Due to a lack of growth, we recently scoped her for celiac and she was negative. However, we decided to go gluten-free a few months ago and she subsequently put on 4 lbs and grew 2 inches.

This year, her doctor ran a battery of tests and said she could have PANS and/or lyme due to the following tests:

• M. Pneumoniae IGM 1.56 (H)

IGenex Lyme Test

• IGeneX IFA, B Burgdorferi G/M/A >80 (Positive)
• IGeneX IGM 31kDA +, 39 kDa IND, 41 kDa IND
• IGeneX IGG 41 kDa IND

- Nagalese Marker 1.20. The normal range is 0.32-0.95.

She has never been sick (other than a 5-day fever in 1st grade). I can’t recall her ever having a tick bite. She currently takes a bunch of vitamins: magnesium, C, D3, zinc, omega 3, Vayarin, and a probiotic. All vitamins are to address ADHD needs. Although could I have had the wrong diagnosis this whole time?

What do you think of her test results? Do you have any recommendations for additional tests or next steps?

Thanks in advance for any help!

[Chemar]

Hi

Bumping up your first post for others to see

[bws1565]

Unless I am missing something this seems like Lyme. We followed the pandas route for several years, until my dd's diagnosis was corrected to Lyme. I also never recalled a tick bite. My daughter has been having symptoms like forever until properly diagnosed. She is now being treated and doing much better thankfully.

[pr40]

sounds like our ds. he also had mycoplasma. he is on long term abx and supplements similar to yours. he is the care of dr pasternack at mass general.

I would at least try abx for a few months just to see if there is any change. quick way would be to try steroid burst.

i think you have a pans case.

[mama2alex]

It's possible your daughter has gestational Lyme. That was the case with our son who also was colicky and light/sound sensitive as a baby, and always anxious and impulsive to some degree. He didn't have his overnight onset into full-blown OCD (PANS) until just before he turned 9, but before that had "features of" a number of disorders including anxiety (dx at age 9), ADHD (dx at age 13), mood disorder/ODD, and sensory integration disorder (dx at 6). Have you had any health issues at all? I didn't realize I had Lyme until my son was diagnosed and I didn't get a positive blood test (Advanced Labs culture) until he was 13. It can be a tricky thing to diagnose.

 

In any event, I would see a good pediatric Lyme-literate doctor to follow up on these test results.

[maybaby]

Thanks for your replies. Per her doctor's recommendation, I started my daughter on 3 ML daily Azithomycin last week (Thursday). The first two days, she had bedwetting and urinary incontinence during the day. Her behavior has become significantly worse. Her doctor says she is having a herx reaction. She has had major meltdowns, severe impulsivity, increased brain fog, and anxiety. I've received a few concerned phone calls from the school over the past few days.

 

We live in the Chicago area. I have an appointment with Dr. K next week. I read about him through this forum, and was lucky to get an appointment with him. I know he is a PANDAS expert, but does he also deal with lyme? For those who know him, any advice for how to prepare for the appointment?

[nicklemama]

Dr. K does not deal with lyme. My son is a former patient of his. My advice is to the seek the help of an LLMD. My son did not get better until I took him to an LLMD. I wasted 2.5 years on PANDAS treatment, including the cost of IVIG twice.

[mama2alex]

I agree with Nicklemama - an LLMD is your best bet right now. We saw Dr K and he prescribed IVIG, but when we told him our local doctor had found signs of chronic viruses, he told us that had nothing to do with our son's situation. That turned out to be wrong. He does not look at any infections other than strep and mainly only uses two tools - IVIG and steroids. An experienced LLMD will look for many infections and issues and if they're integrative (as most are now), they'll be familiar with many different modes of treatment.