queenmother

http://abcnews.go.com/Health/anxiety-head-gut/story?id=20229136
 
Yes, we will all smile and say..."well isn't that interesting".

So sorry. My daughter has struggled with this but (knocking wood now), we seem to be having a nice long run of pretty normal, whatever that is. My daughter's big triggers are mycoplasma and bartonella. She also had strep in her gut confirmed by a stool test but it did not show up on any other test or her titers. Interestingly enough however, strep in the gut has been proven to be directly related to anorexia. Definitely build up her vitamin D3 levels as D is critical. Originally, we hit the mycoplasma and bartonella hard with a few months of doxycycline. Doxy treats both mycoplasma and bartonella and is well-tolerated for long term use. After the first couple of months, we put her on a maintenance dose which is the same as for acne and we were told teens can take it safely for a year. We took a break from it last summer and she did great!!! When school started back in the fall, I started her on the maintenance dose and plan to keep her on it until we are past 'sick season.' She has a fantastic winter thus far. (Really scared that I'm jinxing it but really want to share our experiences as it may help your daughter) Every morning I also give her one Mitoforce (HolisticHealth), one Holistic Health MTR/MTRR/SUOX methylation support, a sprinkle of phosphotidyl serine (helps the dopamine receptors), a sprinkle of Metfolin, a sprinkle of HOlisticHealth MTHFR A1298 Liver Support (she does not have the A1298 gene mutation but the compound formula has a lot of stuff in it that she needs and was recommended by Dr Yasko), and I give her a colostrum tablet. I compound all the sprinkles of various stuff and some hydroxyB12 and put it in the capsules myself. I also give her a Royal Jelly capsule every day to help with her BH4 levels. (It has low levels but definitely helps) I also give her a cup of chamomile most nights and put a packet of xylitol in it. Dr. Yasko says that xylitol helps kill strep in the gut as does papaya. We also have hit a new awareness that anorexia is more like OCD and my daughter's brain gets locked. Now I gently remind her that we need to unlock her brain and its easier to deal with it. Sometimes the tea helps. Sometimes I have to resort to Advil (not for a while....knocking wood again). I also give her Sambucol occasionally to ward off viruses. And we talk about what we can do to get un-stuck. Piano helps. Writing in her journal helps. I have heard that inositol is great for anorexia and OCD. I've been reading about it but, honestly, I don't want to change anything right now. I hope some of this helps. By chance, do you know any of her other genetics? I have some theories.....
QueenMother

blastocystis hominis was one of the critters that showed up on DD's stool test about 3 years ago. After treating other parasites - and h. pylori - it has not shown up again. I assume something in the pharmaceuticals, herbals, minerals, and ritualistic cleansing ceremony must have killed it. Just kidding about the ceremony, sort of. We were pretty desperate at the time.
QueenMother

Absolutely. I would turn every stone to rule out every infection on this planet before accepting a purely 'mental' diagnosis. I missed so many of those cues for years, the fears, the paranoia, the obsessions....always thinking that they were just a phase that my very bright, imaginative daughter was going through. When a teacher complained about her humming in class, I just thought it was because she loves music and wasn't particularly challenged in school. I missed so many cues because I did not know one thing about ocd and tics. As she got older and the tantrums grew more intense and the behaviours became more bizarre and the emotions became more unstable, well, I really wasn't sure if it was hormones or if I should start to worry about a bigger problem. By age 13, we clearly had a big problem and I kept telling the doctors that there was a pattern to it. I just couldn't figure out what triggered the pattern. And I could not find a doctor who would listen to me that when I said there was a pattern. Finally, at 16, we know that she has several triggers that set off an autoimmune reaction....PANS. We went through the hospitalization and much of what you mentioned and none of the doctors at the major university hospital helped us with anything. They simply wanted to drug the issues. Fortunately, our local PA ran infection panels and we were able to start treating the triggers. And guess what? My daughter is much better! We are early in our journey (and it will be a long one) but I see that we are finally on the right road. Get your daughter tested ASAP! Do NOT accept that she is destined to live like this. There is hope.
QueenMother

Absolutely. I would turn every stone to rule out every infection on this planet before accepting a purely 'mental' diagnosis. I missed so many of those cues for years, the fears, the paranoia, the obsessions....always thinking that they were just a phase that my very bright, imaginative daughter was going through. When a teacher complained about her humming in class, I just thought it was because she loves music and wasn't particularly challenged in school. I missed so many cues because I did not know one thing about ocd and tics. As she got older and the tantrums grew more intense and the behaviours became more bizarre and the emotions became more unstable, well, I really wasn't sure if it was hormones or if I should start to worry about a bigger problem. By age 13, we clearly had a big problem and I kept telling the doctors that there was a pattern to it. I just couldn't figure out what triggered the pattern. And I could not find a doctor who would listen to me that when I said there was a pattern. Finally, at 16, we know that she has several triggers that set off an autoimmune reaction....PANS. We went through the hospitalization and much of what you mentioned and none of the doctors at the major university hospital helped us with anything. They simply wanted to drug the issues. Fortunately, our local PA ran infection panels and we were able to start treating the triggers. And guess what? My daughter is much better! We are early in our journey (and it will be a long one) but I see that we are finally on the right road. Get your daughter tested ASAP! Do NOT accept that she is destined to live like this. There is hope.
QueenMother