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AlyMom

New member here - Is this Lyme/PANS in 4 year old?

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Hi. New and overwhelmed. My 4.5 YO had a sudden onset of motor and vocal tics, adhd, clumsiness, OCD, sensory stuff, sleep disturbances, tantrums after falling sick with a cough/fever Dec 2015. Pediatrician suspected PANDAS and started him on Cefdinir however ASO/DNASE negative. Symptoms improved 50% in a month however new symptoms kept emerging. We saw Dr B who ran more tests and diagnosed PANS with borderline Lyme. See Igenex and Galaxy results below. Started on Azith, Cefdinir and Malarone last week. We are seeing an increase in some symptoms (herx?) while others are in check.

 

In hindsight, my son was bit by an insect when he was 3 but the ER doc did not think much of it and sent us home with a topical lotion. There have been symptoms (eg tantrums, meltdowns, wanting to be carried) that we chalked up to difficult boy behavior. So sad this has turned into full blown PANS. Do you think this is Lyme/PANS? I would hate to treat him with antibiotics/anti-malarial for two years if he doesn't have Lyme and we should have been looking for something else. BUT if it is Lyme then I need to toughen up and prepare for a long road ahead.

 

Igenex

Lyme: Negative overall

IgM 41 IND

IgG 23-25 IND, 39 IND, 41+++

 

B Microti

IgM 20 (may or may not indicate active infection)

IgG <40

 

Galaxy Bartonella

IFA 32 (less than or equal to 32 indicates negative. Greater than 1.64 positive)

 

All other co-infections negative.

 

My questions are:

1. Do you think he has Lyme, Babesia, Bartonella?

2. Are there additional tests you would recommend to confirm diagnosis?

3. I keep reading that there is no cure :( Any stories of successfully eradicating these infections?

4. What treatments and length worked best, especially if you had a young child?

5. Should we find an integrative LLMD in addition to Dr B? Any suggestions close to NYC?

 

 

Sorry for so many questions and thank you for your help!

 

C

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My son is fully recovered from Pans/Lyme. Took a long, long time. But recovery is possible.

 

Yes I do think it's worth treating your child for Lyme given these results. My daughter is now working with our integrative LLMD in central CT. PM me (click on my user name and then the "send me a message" option) if you want his name. There is no one path to healing, so no one can say "take this, or do that" - treatment is very individual.

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