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Every time I try to discuss methylation with my DD's LLMD, he tells me not to worry about it b/c treating her lyme is the big focus. My gut tells me that I need to consider and address her methylation results, especially as we continue to detox during her lyme treatment. My DD is constantly in an emotionally restless state (we never know when we're going to have a good or bad day). Her tics, rages, and ability to be and feel " calm and present" wax and wane with her medical treatment. Here are my concerns re: her 23 and me results: Detoxification: CPOX4- GT (1/2) CYP1A1- CT (1/2) CYPD2D6- AG (1/2) GSTP1- AA (2/2) NAT2- AG (1/2) Neurotransmitters: COMT V158M & H62H +/+ DAOA- AA (2/2) GAD1- AA (2/2) MAO-A +/- Folate One-Carbon Metabolism/Methylation: CBS C699T +/+ CBS A360A -/- MTHFR C677T +/- BHMT-02 & 08 +/- Endocrine: VDR BSM & TAQ +/- I've done nutrahacker and tried to read (with many failed attempts) the Heartfixer document. I'm most concerned with her homozygous CBS, COMT, DAOA, and GAD1 (high glutamate/low gaba) mutations. I also can't figure out if she is an over/under methylator. I don't know what to make out of her detoxification mutations. When I showed the doctor her 23 and me results, he said to "watch out" for histamine??? I'd love any advice you have to point me in the right direction for how to interpret her results, recommended supplements and a treatment protocol.
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Here is a blog that is loaded with a few more websites and helpful things to help interpret your results. Has anyone used the Nutrahacker site to see if they are on track with the right supplements? I am thinking about entering my son's results. http://www.stopthethyroidmadness.com/mthfr/ Here are a few more articles that explain Sam-E. The last article discuess Sam-e and histamine. http://ajcn.nutrition.org/content/76/5/1151S.full http://thyroid.about.com/od/MTHFR-Gene-Mutations-and-Polymorphisms/fl/The-Link-Between-MTHFR-Gene-Mutations-and-Disease-Including-Thyroid-Health.htm
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Hello, my 8 year old son, mild/controlled pandas for 4 years, on August 6th had 3 pins (like nails) were yanked out of his healing humerus (had broken upper arm bone 3 weeks prior from monkey bars fall) by ped orthopedic surgeon. He was sedated with nitrous oxide and versed. He takes prophylactic augmentin daily and a weekly Zithromax dose for pandas. The next day he began a new and severe flare with food refusal. Working with dr. T. Many labs drawn, changed to cefdinir and Zithromax daily, no help. Now will try valtrex and biaxin. Forcing son to eat/drink, he lost 5 pounds, now 70 pds. Not currently dehydrated, eating between 500-1000 cal/day under duress. C/o nausea, fear of vomiting, swallowing difficulty. Also poor disposition: grouchy, won't go outside. In the 6 mo prior to arm break he would get a breakthrough pandas flare from skinning his knee or any break in the skin (bug bites). In the last 2 weeks of this yucky flare I notice he improves after he eats a treat with dark chocolate. Now I'm thinking caffeine, histamine, mast cell, etc reaction to having the pins pulled. But I have trouble wrapping my brain around this concept. Can't reach dr. T yet. Can any of you school me in how this works? The histamine, mast cell, inflammation, genetics, mthfr..... Labs, diagnosis, treatment.... Thanks so much. -
Its been a bit since I have posted on here but wanted to give an update. Last I posted we were experimenting with a steroid burst which was highly effective but not sustainable. Recently I heard of something called DAO. Its Diamine Oxidase and is an enzyme that helps the body process histamine. My son has always shown increased tics after eating, going outside, exercise, stress, excitement and infection (of course). We have been infection free for a while now. Titres for all the major infectious triggers are all normal for him. His gut dysbiosis is now in check. But we still struggled with motor tics. Vocals resolved after his gut was healed. Motors remained and were severe at times. I thought about the increase in tics after things like eating and exercise and knew that my son's issues were inflammation related but one day it clicked that the inflammation must be due to histamine. So I started him on the Histame (DAO), 2x a day right before breakfast and dinner. its been a little over a month and 95% of his motor tics are gone. The one that is left is a finger wiggle which is not noticeable at all. No other PANS symptoms to mention since those had resolved with diet changes and the addition of supplements. I just wanted to mention DAO for kids with suspected mast cell activation disorder (MCAD) because this has been miracle for us. We are still on prophylactic abx to keep strep away but have not needed any additional steroid and are planning to come off the Mobic this weekend as well. Hoping this goes well. I will report back soon. The Mobic wasn't really helping that much anyway and I don't want to keep giving it for the sake of giving it. Hope this info can help others with suspected MCAD.
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Histamine Level - Has anyone checked this?
mama2alex posted a topic in PANS / PANDAS (Lyme included)
Qannie47 posted an interesting link on histamine levels and I'm thinking about asking our LLMD to check ds. There were just too many similarities in the description of high histamine kids/people to ignore. Has anyone else looked into this?