Hi Healthgirl,
I agree with all this, as you can imagine. I've followed all your posts and your case with the terrible situation involving your children too. I can't imagine how I'd feel in that situation and so I get your frustration with the medical establishment. It must be infuriating. I'm not sure about this, but it may be that our cases are different in that with you and your children there is some serious environmental trigger, where for me it has been long in the works via continual dysbiosis because of diet. I Again, just a thought. Your situation seems to be more extreme than mine, not that mine is a walk in the park, and diet seems to be an immediate trigger for me. I don't know, perhaps diet is a big trigger for you too.
What really matters though is that in both our situation our gut is implicated. I can't recall if you've tried antibiotics, herbal or Rx, powerful probiotics, say like the ones you can purchased from Custom Probiotics, and also diet. That's the route I'm on and in a few days I'll start the Rifaximin. And I will surely post, hopefully with good news, once I've taken them. I clearly have SIBO and dysbiosis, so there's little doubt there. Once that's over, I'll give it a few weeks, and then start on a custom probiotic blend powder that I ordered from Custom Probiotics. I've never taken them, so I'm not sure what to expect.
I'd be happy to share blood tests, but I'm afraid mine are not complete and not very useful. That's part of the problem. Nothing has really been found, other than low WBC and a few other things, which all went back to normal. The only thing that has stayed low is WBC, but even that creeps up a bit over the low end of normal. And unfortunately I don't have access to the diverse tests that you do in the States. I wish I did. I may end up going to the Mayo in a few months. If I do, I'll be happy to share that complete set, if there's anything interesting. This is the problem for me, nothing shows up, or nothing that's helpful.
I hope the new GI helps you. And by the way I didn't receive a message from you.
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Originally Posted by Healthgirl
Hi David, I wholeheartedly agree with you and have read enough medical reports and scientific information on pathogens which interrupt the microbiome and cause systemic and immune mediated illness. I am learning more everyday and feel that I am getting closer to figuring it out. There is also a genetic component to this as well. I am waiting on my complete genetic work up results at Columbia. My children and I were spurred into this neurological problem beginning with gastrointestinal symptoms. All of our guts were compromised. I have come across many cases on pathogenic causes that I present to any doctor who will listen. I am prepared to start trying treatments, but will request more testing to rule out bacterial, fungal, and parasitic causes. If you would like, we can compare blood work and results.
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