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Everything posted by LNN

  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
  15. I found this post on another forum from one of my dear Latitudes friends - Rowingmom She took an excerpt from Buhner's facebook page (I think - or maybe his website) 2) In the EU/UK try: Julia Behrens-Medical herbalist Herstmonceux Health Centre Halisham Road, Herstmonceux East sussex BN274JX Tel:01323833935 Appointments-Mobile )7968366783 http://www.hmxihc.co.uk/ http://www.herbal-consultant.com http://www.albionclinic.org.uk Julia Behrens Medical Herbalist Albion Clinic 1 Albion Street Brighton BN2 2NE Work 01273 628221 Mobile 07968 366783 http://www.albionclinic.org.uk/ There is a ne
  16. I think it's great that you've finally found some clues! You may need to find some European Lyme forums to get connected with doctors or with treatment protocols. Some of the advice I can give is limited by geography - such as not being able to suggest sources for herbs. Coxsackie is a pretty common virus, especially in kids. But if it seems you're not able to get rid of it, that could be a result of your immune system fighting other infections and just being too tired/weak to fight the virus well enough to get rid of it. There are a few helpful antivirals that are available in health food
  17. Don't put a lot of stock in the Western Blot. It's notoriously inaccurate. From what I've read, Elispot/iSpot seems more reliable. Here's something I wrote about Lyme testing that might be helpful - Lyme Testing – All the Lyme tests that are available have flaws. There is no single test you can do to prove you do or don’t have Lyme. But the standard lab tests from labs like Quest Diagnostics or Labcorp are more flawed than Igenex, the lab used by most Lyme Literate doctors (LLMDs). There are two important differences that make Igenex more useful. Western Blot lab tests for Lyme measure wheth
  18. I think removing antibodies - which is what plasmapheresis does - would be the worst thing you could do with Lyme and co-infections. You need the immune system to have T cells that can fight these infections. You don't want to strip them away, making the body start all over again. I know you might be thinking that pheresis also gets rid of auto-antibodies. But the better way to handle this would be to help the body reduce inflammation and hep close the blood brain barrier. For bartonella, I've found arginine - an OTC amino acid supplement - to be very helpful for symptoms, especially f
  19. Wombat - I don't know of there's an easy answer to your question about boosting the immune system. Some people would agree with you and say that activating the immune system in someone who has an autoimmune disease is a bad idea. Others would say that if that autoimmune issue is caused by an infection, then activating the immune system would ultimately be a good thing, albeit a course that held risk for lots of inflammation while your body fought the infection in a more aggressive manner. One approach would be to take things that helped your body fight inflammation for a time and then, kee
  20. Gpookie - Wombat is having an anxious reaction to a particular word used in Ryan's post and it triggered anxiety around similar word I used in my post. I've edited my post accordingly.
  21. Wombat - congratulations on getting tested!! That's a huge accomplishment! I hope it pays off for you. In terms of herxing, there are really two separate issues. A true "herx" is a body's response to the neurotoxins that are released when certain bacteria die - a kind of chemical warfare the bacteria launches as a last ditch attempt to ward off threats. Lyme bacteria when it's in it's spirochette form can do this. For this true herx, you focus on helping the body remove the toxins - using things that support what's called the trans-sulfuration pathway - n-acyetl-cystiene (NAC), CoQ10, glut
  22. I'm sorry - I don't know your history, since I'm not on this forum very often anymore. But I've been a Pandas mom for 8 years, with my now 14 yr old son having battled strep and Lyme (fully recovered now) and my 12 yr old daughter currently fighting some chronic infection - possibly Lyme and Bartonella. Here is my personal experience - when my son was treated only for strep, with one antibiotic, he could never sustain remission. He had a tonsillectomy, plasmapheresis and IVIG over the course of 2 yrs. But then we found Lyme and he was treated with combo abx (a variety of augmentin, azithro
  23. Plum99 - here are some great herbal antibiotics http://tipsdiscover.com/health/systemic-herbal-antibiotics-alchornea/ Read the overviews of Alchornea, Crytpolepis and Sida Acuta. They are very effective - provided you take enough of them. My daughter still needs antibiotics, because it looks like we're dealing with a chronic infection (possibly Lyme) but she does much better if we also add a blend of these 3 herbs, sold as C.S.A. vy woodland essence. http://woodlandessence.com/herbal.htm All herbs have earthy tastes. My kids take them by putting them into empty gel capsules (from am
  24. I think you're confusing two separate things. There's the glutamate cycle, which is a cycle and recycle of glutamine, glutamate and gaba - all neurotransmitters. Glutathione is an antioxidant - the grand garbage collector of the body that is created in the transsulfuration cycle. Amantadine is an NMDA antagonist and blocks this glutamate receptor (NMDA). So you may be seeing good things because you're reducing glutamate. But I don't think it has anything to do with glutathione.
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