what has worked best for anorexia?

[trintiybella]

She is losing lots of weight. Thinks she is fat :0(

[queenmother]

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

[searching_for_help]

Our daughter has had anorexia and OCD/anxiety/intrusive thoughts for 10 years. She has been diagnosed with PANDAS. I'd like to say that we are in a good place, but we're not, YET. We just got back lots of test results, and it's clear that her gut is a big problem. She had strep all the time when all of this first started. But it looks like MycoP might be one of the things we are dealing with. And clostridia in the gut. (But she does have a bit of strep in the gut that no one has seemed concerned about... Hmmm...)

 

The testing shows majorly screwed up neurotransmitters (doc said it looks like "Brain of fire"), low amino acids, high cortisol, adrenal fatigue, problems with pancreas, low in important vitamins and nutrients, etc. Basically, the more I read it sounds like infection/inflammation can screw up all of these things, and if the gut is not working properly (leaky gut), and hers isn't - you can't utilize properly what your body needs. This can directly influence your neurotransmitters, which play a huge role in how they feel and deal with things. (Yep, you vegan/vegetarians out there - you DO need to supplement with B12 or your serotonin availability will be a problem...)

 

So, our next step is to treat the infections (clostridia in gut and mycoP with doxy), and I'm supplementing with unreal amounts of stuff to keep her as healthy as I can until her gut is working properly. (I buy sublingual when I can, to bypass the gut, but this is also difficult as she has to know the calories in EVERY SINGLE PILL... urgh!) She is compound hetero for some MTHFR mutations, she has all the snps for screwed up BH4, hetero for some CBS and COMT snps, and also is homo for MAO A, so we supplement for those, and strangely, we just found out she is high in zinc and low in copper. I thought that was weird, usually anorexics are low in zinc... so I have to get that straightened out. She seems low in lots of things that mycoP scavenges, so this is really a challenge. But I believe that if we can get rid of the myco and heal the gut she'll be in a much better place. And she so desperately needs to be after all these years. We're all exhausted and she truly believes she'll never get over this nightmare.

 

Queenmother, glad you mentioned the strep in the gut. Think I'll add more zylitol, just in case...

[3bmom]

I found this very interesting! Our DS anorexia improved with antivirals and antibiotics. You guys show me I need to do the genetic testing. Have been to wiped out from last flare but do want him off prophylactics.

 

Did you go to Amy Lasko or someone? Or did you figure out all the mutations yourself?

[3bmom]

One more thing Trinitybella, did you have her ovaries and uterus checked for growths? That can cause OCD too.