Emmars26

We are currently treating for mold. Beginning of that work for our family and daughter. She primarily uses NAC as a binder, which also has some benefit for impulse/tics. Not 100% sure yet which thing it is impacting yet...Also, looking into histamine and methylation. Almost to the nasal part of treatment.

I just wanted to update that our college age sibling, let us know last Friday that she had some small simple tics show up. So I also have siblings with tics within two months of each other. She was home to support sibling twice during the two months, both times when the home improvements were happening (possible mold exposure) and in addition she had a peg 3550 exposure (main ingredient in miralax), but hers was from the moderna vaccine. Neither sibling has ever responded to a vaccine before.

One week into some mold TX and very beginning of DNRS utilization. Daughter with tics is improving. So soon to really tell, but we are treating 5 of us for mold symptoms (e.g. I had extremely itchy eyes and headaches, fatigue). All are seeing improvements in moods and fatigue levels, except for husband-but he got his 2nd covid vaccine so not feeling great was expected.

We are also looking at mold/CIRS as a major trigger for our 16 year old. Did a small home remodel in the boiler/storage area, husband found mold. Within one week, daughter had sudden onset of tics. I will start another post about another trigger, but dr believes mold is part of her issues.

I hope your doctor was helpful with testing.

I don't have any answers, but wanted you to know that I read it and I am sorry that you are dealing with this. I have one teen who started complex motor and vocal tics in January and it can all be quite scary. We are currently looking into mold as a possible trigger. But we ruled out any strep infections with antibodies. I hope the PANS PANDA folks can help you more.

Have you seen the book "Toxic" by Neil Nathan. Lots of advice in there, some that you can try without practitioners. But, be careful. I think some of the prescriptions for Lyme might be covered by insurance...but we don't have Lyme so I have not looked into it as much. This alternative stuff is so expensive.

Thank you Shelia. Our Dr. talked about the limbic brains training to respond to trauma (physical, emotional, etc.) being stuck in an unhelpful pattern. He said that often patients who can't tolerate Walsh protocol or similar TX's need to do limbic retraining first. I also, since then have seen it mentioned multiple times in Toxic Mold, Dr. Neil Nathan's book. It seems that for highly sensitive patients the neural connections to mold/lyme/ other physical or emotional traumas are overly intense and slow down TX. I will keep everyone updated. It is not specifically for tics, but we are hopeful.

Our 16 year old developed sudden onset motor and then phonic/vocal on 1/18/21. She said she had 2-3 pre cursors the week before, that felt like a 'ghost shiver' in her words. I was surprised by the medical communities response to these symptoms (2 separate ER's, neurology). I had to push for any testing at all (WBC, Strep antibodies, etc). I also had to find the research in medical journals to validate the tests. Ruling causes in and out seems important to us. We have switched our daughter's primary to the doctor her brothers where already seeing. He is an MD, who integrates Walsh, yeast, mold, etc. He initially did not think mold, until she asked him a couple of questions related to memory. Anyways, she is getting tested for mold, the house is getting tested for mold, we are beginning work with a chiro trained in functional neurology. Possible catalyst of Wellbutrin, systemic issue of mold (home improvement project in basement family area discovered mold, her room is in the basement. Her tics initially were quite intense, she could hardly communicate. They improved drastically the first week. Remained stable for two weeks, my husband then finished another basement project, revealing more mold. Her tics increased, but not to the initial few days level. They stayed more intense for about a week, and our starting to improve again. After we completed gathering the dust and urine to test, we did put high quality hepa filters in her room and family room. I found Sheila's book on natural treatments about 2 weeks ago. It matched up with my philosophy on integration and the research I had already worked on. We are waiting for results or her and house mold tests, for our next steps. Dr also recommended Annie Hopper's DNRS. Anyone use that?