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AlyMom

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  1. We have an appointment with an LLMD next week and I want to be as prepared as possible. Please can you share what tests helped you confirm or rule out Lyme? My 4 year old son did Igenex Lyme and Coinfection panel in January with overall negative results IGM Negative 41 IND IGG Negative 23-25 IND, 39 IND, 41+++ We are getting mixed opinions. Pediatrician and couple of specialists are saying these results are clearly negative. If there was Lyme, the treatment my son has had would have cleared Lyme long ago (2 months on Zith, 2.5 on combination antibiotics). Other doctor disagrees and wants to continue treating my son for Lyme with multiple antibiotics long term due to INDs on specific bands. Can the INDs on IGG mean past infection i.e. if he was exposed his body will always produce something even after the infection has cleared? Can bands 23 and 39 cross react with other infections? Are there tests that can directly confirm the presence of the antigen, not antibody? Has anyone done Igenex urine test with provocation, Muscle testing, Immune Complex testing, or Lyme Culture with success? I am desperate to get a clear diagnosis and open to taking my son off antibiotics for 4 weeks if needed. PS: no known history of tick bite. He is 99% back to baseline since onset in December. Happy and thriving at school and home. We know he is PANS as he flares with a cold and we nip it quickly with Ibuprofen. Only lingering symptom is joint pain at the back of his knees while walking but he is able to run, play and ride his scooter. So confused. Would love to hear what tests helped you.
  2. 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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