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LNN last won the day on September 4 2018

LNN had the most liked content!

About LNN

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    Member of Pandas/Lyme/methylation communities

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  1. My daughter has CIRS and yes, that can cause tics. In her case, the mold exposure was/is in the schools. We found three things helpful - improving the environment, treating a fungal infection in her sinuses (frequently accompanies an infection called MARCoNs) and helping the body detox. I could write a novel on all of this, so I'll only focus on the environment since that's what you asked about. We did some basic cleaning up of our home (replaced carpets with hardwood, tossed lots of things from the basement, run a dehumidifier, got rid of house plants) but our ERMI test showed that the h
  2. Mountainmom, My son had Lyme/Pandas and a month-long steroid taper helped him immensely twice, and did nothing once, over the 5 years he battled his illness. Our LLMD isn't a huge fan of prednisone but does recognize it has it's place for Pandas kids. Like your son, my daughter was in her darkest days yet had no definitive infections. She did have Marcons - you may want to ask about that. I may never know what exactly she was fighting, but I do know that a combo of bactrim and zith and prednisone saved her. Low dose naltrexone was also helpful. She has struggled immensely from mold i
  3. Is your son still being treated for Lyme & co? Are you working with an LLMD? My DD suffered from Pans-induced anorexia and it was terrifying. For long term healing, I'd say you need a combo of antibiotics, rotated periodically. For the near term, you need to treat this for what it is - life-threatening, regardless of trigger/cause. Google the "maudsley approach" to treating eating disorders. It may be OCD that's keeping your son from eating, but his body needs calories or you end up with a cascade of physical health problems and mental health problems. For my DD, it took a combo of 2
  4. My son struggled with Pandas/strep/lyme/mold from the ages of 6 to 12. It took him about 2 yrs to fully recover his cognitive/academic abilities. He went from an "IQ" (using a crude standardized test) of 93 to 116 and I suspect he'd score higher if tested now. The tests showed large discrepancies between his verbal abilities and his spatial math abilities. These have narrowed as he's recovered. Two things, in addition to fighting infections, really helped him academically. First, he was diagnosed with pyroluria - a zinc/B6 deficiency caused by his body produces excess pyroles, which are a
  5. No, we're not looking at yeast. We're looking at Lyme and chronic residual effects from mold illness. I've unfortunately been in this world of chronic infections for a long time, so my kids aren't strangers to nystatin, diflucan, anti-fungal herbs, molybdenum, arginine and the slew of other supplements used to manage fungal issues. My daughter is responding well, but in an unexpected way, to tindamax. Instead of herxing, it seems to just make her feel better - not home-run better, but incrementally better on the days she takes it. She also has a long history of mold illness and inflammatio
  6. I think of two things when I hear brain fog and chronic fatigue as dominant symptoms - Lyme (or co-infection such as bartonella, babesia, ehrlichia, mycoplasma) and mold. i think the benefit of seeing a Pans specialist (i.e. not one who focuses solely on strep as a trigger, but one who will explore environmental factors and chronic infections) is that s/he will dig deeper to find the trigger and do various trials of treatments. My DD12 developed anorexia and panic attacks that but us in a critical situation. I have always been reluctant to use SSRIs (tho I don't at all judge those who need
  7. Given your kids' histories, I think it's very reasonable to suspect that there's a common infection, as well as possible genetics, that link your family's health issues. It could be Lyme (either congenital or from all of you being exposed during a shared hike or trip to an endemic area) or mycoplasma, which is highly contagious, or both, or these plus some other shared infection. It can also be that some of the mutations in the genes your family shares are contributing to the way your bodies are handling the strain. The first place I'd put my money is on seeing an LLMD (lyme literate M
  8. Since your DS is +/+, his body is struggling to convert any form of folic acid or folinic acid into methylfolate (+/+ means he's probably only converting about 10% of the raw stuff into the end product of methylfolate). You need to introduce both methylfolate and some form of B12 (cobalamin) - since these work as co-factors and you need both as part of your supplement plan. You want to avoid synthetic folate (found in cereals and other fortified foods and most multivitamins). I'd start with this product http://www.holisticheal.com/methyl-folate.html because it's a liquid and each dro
  9. I can't imagine anyone who understands mold saying that it wouldn't impair a child who has an autoimmune disease. That's nuts. My daughter struggled with mold exposure in her classroom and it definitely contributed to her Pans symptoms. We ended up home schooling for one year until she was able to matriculate into the Jr High School (different building). I would recommend two things - run an HLA-DR blood test to see if your daughter is among the 25% of people who can't rid their bodies of the toxins that molds throw off. If hr HLA-DR gene results put her into this category, you need to get
  10. I will add that at 12, she's entering her final growth spurt. Calories are critical and being underweight now could have permanent effects. I think you need to be very vigilant. Fwiw, we reluctantly turned to lexapro. It didn't help with ocd. It only made her tired, and helped her fall asleep. That was a good thing. But there's a small study suggesting ssri's may stunt growth, so we'll be weaning off as we approach summer. Between the anorexia and lexapro, my dd12 hasn't grown any in the past year. I'd try adding a second antibiotic before adding an ssri. Imo
  11. In our situation, fbt was essential and the "why" behind the anorexia was temporarily irrelevant. It was eat or face a feeding tube. So we endured rages and hatred. We were in crisis. But once my daughter started antibiotics and prednisone, she became a partially willing participant. We still had to count calories and use fbt in order to fight the ocd. It just wasn't as intense of a battle. I would use bmi as a guide. You cannot let someone battling anorexia just eat when they want to. Whether it's from body dysmorphia or from pandas ocd, you can't trust an anorexic to eat responsibly
  12. Welcome to the forum and "welcome" to Pandas/Pans. I've unfortunately been at this for many years, first with my now recovered son and now with my daughter. I home schooled my daughter last year because her health was too precarious. Because it was only for one year and we always had the intention of returning to public school when she was able (for social reasons), our approach was probably different from yours. But I'll share what worked in case it helps. I think the biggest thing that was helpful was mindset. Like your daughter, mine went from being very capable to being very handicappe
  13. The other thing to focus on is inflammation. You can only detox just so much, and based on your genetics, many of the things suggested for detox can actually work against you (if you have a genetic mutation in your CBS gene, which regulates your detox pathway). So taking things to reduce inflammation can also be very helpful. In addition to or instead of motrin, we use 1/4-1/2 tsp of Japanese Knotweed for general inflammation and 1/2 tsp of Red Sage 3-6 times/day. I've not used Burbur or Pinella so I can't comment on those. I highly recommend Stephen Buhner's books on Lyme and co-infec
  14. With both COMT + and MTHFR +, I don't think it's a question of over or under methylation. It's both. Ben Lynch describes it as driving with one foot on the gas and one foot on the brake. My DD is in a similar situation - both in terms of her snps and lyme/bartonella. Every body is different, but here's what we've found helpful: CBS - my DD is only CBS +/-, so not as bad a predicament as you face, but we need to avoid the supplements commonly used for Lyme detox. No NAC, no alpha lipoic acid, no tumeric, no glutathione, no epsom salt baths. However, I don't restrict the foods you're sup
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