Toxic Mold and PANDAS

[CharisJoy]

Hello everyone, my 21-year-old brother was diagnosed with PANDAS shortly before his 18th birthday, and he also has a past history of Lyme disease. He has been in and out of the hospital and psych wards over the past several years and often unable to care for himself and in a psychotic state. I know that there is toxic mold in the home where he has lived his entire life and recently he went to stay with his older sister for a week and saw some small improvements (was able to eat, carry on some conversation, etc.) but when he returned to his home with my parents and two other brothers he grew intensely worse and ended up hospitalized again. My family has not seen any connection between mold and his condition and just attribute it all to the inflammation they are told is in his brain. The only thing he has received in the past that has given any help were the IVIG infusions but they never lasted and this past time, there has yet to be much improvement seen from them. I am putting out a call for help to any parents out there who may have some helpful advice, experience, and especially scientific evidence on the connection between mold and PANDAS, especially because I am 99.9% confident that my brother is one of the 25% who is unable to detox the mycotoxins from mold. I had to leave that house because of my own chronic illness and the mold keeping me from stabilizing or improving. Thank you so much for any help you can offer. Grateful!

[bobh]

Mold is definitely known by parents to trigger PANS/PANDAS symptoms.  Unfortunately, it is not specifically named or recognized (that I can find), at pandasnetwork.org or pandasphysiciansnetwork.

Search mold in this forum, and you will see some discussion on it, some just a couple of months ago.

Is there any way for your brother to move out of that house?

[boysrlove24]

Hi! What a great brother you are for reaching out to help your sibling. Mold is DEFINITELY a trigger and there are many who have improved after getting out of mold (first and foremost) and then detoxing the mold from the body. There is a urine test that can help to determine if your brother has mold toxicity. It's from Real Time Labs and measures the mold toxins that he excretes in a urine sample. The important thing though is to "stir up" the toxins in the body before taking the test. To do this my son's doctor had him take liposomal glutathione (1 tsp. oral glutathione) everyday for one week and then the day he's going to take the test have him sit in a hot tub or sauna for 10 or 15 minutes and wait for 30 minutes then collect the urine. My son took this test and it was extremely helpful. The only problem is that it is a very expensive test - $699. There is a great book on mold toxicity that you can check out - it's written by Dr. Neil Nathan and the title is: Mold & Mycotoxins: Current Evaluation and Treatment 2016. I hope you can help get him out of the moldy environment because until he is out of the mold he won't get better. He also needs to have a nasal swab to check for a marcons infection, but again if marcons is treated it will come back if he remains in the moldy environment. Hope this helps. Good luck and prayers for you and your brother.