Okay we are not seeing dr. castells like planned.  Also may have finally figured out one of the contributors of daughter's symptoms:  lyme disease and/or confection bartonella.  she has the cat scratch marks that are pictured in this article.  she also has all the symptoms listed in this article:  http://www.townsendletter.com/July2010/savechildren0710.html

I just thought it would be helpful to post.  I have been working hard to get my daughter dx'd and treated.  we are testing her gut for bacteria and will begin to treat that first.  she is too sick for abx - they would send her into a tailspin.

lyme test kit in the mail.  I will update.  I appreciate all your support. K still has many mast cells symptoms however I believe her underlying issue will be infection.  

thanks:)

Hi Julie,

  I didn't know there are ticks where you live!  That's a load of supplements and medications that clinic uses.  Because of the mast cell issues, even if secondary, I would be especially careful about any med that is a product or by-product of fungi.

  I went through a Lyme work-up with a Lyme specialist in Missouri when I was still undiagnosed.  I definitely had a tick-borne illness after seed tick bites.  Unfortunately, I was not treated with antibiotics for the initial bites, and I believe that was one exposure that triggered the masto to flare.  The Lyme specialist was convinced I'd had a tick-borne illness, but he thought it could have been Babesia or Bartonella and possibly not Lyme.  My blood testing was equivocal, but the neurological tests were negative.

  If you have positive results with any of her treatment, let us know!