Suzan Posted October 2, 2013 Report Posted October 2, 2013 My dd12 is doing great so I wanted to give a positive update to you guys. After starting to see a lyme doc in DC in May and getting her on a good protocol and getting her MTHFR diagnosed, she has changed dramatically at long last! Brief history..... first strep age 11 months old chronic infections throughout childhood (strep, sinus, chest, ear) sensory processing disorder (age 5) gluten intolerance (age 6) PANDAS (age 7) Lyme (age 9) separation anxiety, unusual fears, OCD, emotional outbursts, unreasonable, etc. MTHFR mutation (age 11) She still reacts to strep but she recovers more quickly. She sleeps in her room by herself now and I was able to move into the downstairs master bedroom for the first time ever. She gets herself ready for school in the morning. Takes showers, brushes teeth, puts her dishes in the sink, cleans her room. Things are so close to what I think is normal. We still have a ways to go on lyme treatment and I don't know what to expect with the strep reactions. Right now, hoping we can get through the year with no strep infections. She's on Tindimax, Alinia, Diflucan, Thorne Methyl - Guard Plus, probiotics, Yucca Root, and Dandelion Root and a couple other things I can't remember now. She will probably get an abx protocol change in a month or so. Might stir some things up.
LNN Posted October 3, 2013 Report Posted October 3, 2013 :wub: :wub: :wub: (btw - Yucca is estrogenic, meaning it increases estrogen. So be aware and maybe discuss w/your doctor as you all suffer thru the "joys" of puberty).
Suzan Posted October 3, 2013 Author Report Posted October 3, 2013 Thank you both! And LLM, good to know about the estrogen! Have you found any other good supplements for CBS mutation?
LNN Posted October 3, 2013 Report Posted October 3, 2013 Thank you both! And LLM, good to know about the estrogen! Have you found any other good supplements for CBS mutation? CoQ10/Ubiquinol has helped with energy. Using liquid moly from Yasko. Limiting protein and dairy (which is a huge battle). They say you can also use carnitine for CBS but it's not good for people with seizure history and DD has had 2 seizures in her life, so I didn't go there. Phosphatidylserine can help BHMT mutations to work around CBS but I haven't tried it with DD yet (works great for DS, but it's expensive and I've been dragging my feet. But with school back in session, it's probably time to add this one in for DD).
Suzan Posted October 3, 2013 Author Report Posted October 3, 2013 Who is your lyme doctor in DC? Thanks! I will PM you some details.
Suzan Posted October 3, 2013 Author Report Posted October 3, 2013 (edited) CoQ10/Ubiquinol has helped with energy. Using liquid moly from Yasko. Limiting protein and dairy (which is a huge battle). They say you can also use carnitine for CBS but it's not good for people with seizure history and DD has had 2 seizures in her life, so I didn't go there. Phosphatidylserine can help BHMT mutations to work around CBS but I haven't tried it with DD yet (works great for DS, but it's expensive and I've been dragging my feet. But with school back in session, it's probably time to add this one in for DD). Thanks! Great link too. Good job!! Edited October 3, 2013 by Suzan
JuliaFaith Posted October 7, 2013 Report Posted October 7, 2013 So good to hear your news!! Take care!
rowingmom Posted October 7, 2013 Report Posted October 7, 2013 Yay! Wonderful news. It's so good when our kids are more able to function on their own.
nitshel Posted October 7, 2013 Report Posted October 7, 2013 Suzan - can you also PM me the details of the LLMD in DC please? Thx!
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