Maybe I should've titled this " going to the Dark side?"
Just got back from a trip to Cleveland clinic's functional medicine department. This is day one of the detox diet. I will let you all know if and how my health improves on their diet and exercise regimen. Of course, I'm not the best trial to see how well functional medicine works on APLS since my positive blood work turned negative after I went gluten-free in 2004. And currently I am symptom-free on INR of only 2 to 2.5. But I'll let you all know how things develop, just in case any of you my profit from following a similar plan. ( and yes, I will be getting extra INR tests while I'm following this new diet. )
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GinaD
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I look forward to hearing about it! I went gluten free after my diagnosis in April 2015. I'm still gluten free. I would love to see a functional medicine doctor to get to the bottom of this AI disorder. I think it's great you're exploring other avenues to improve your health and manage your disorder.
Again – all my blood work became "boring "after I went gluten-free in 2004. In 2001 my IgG was very very high. My C-reactive protein was also sky high. They did not test for Beata 2 glycoproteins back in that day. So, assuming the functional medicine assessment of autoimmunity is correct, I may have already healed my gut when I went gluten-free. And I may indeed no longer have APLS. The Duke hematologist, who only had access to the boring post 2004 blood work thinks I do not have now and never have had APLS. Since I was again encountering that skepticism that I had to endure for months before my diagnosis, I pretty much ignored his ardent request that i stop warfarin.
But I don't know. Which is why I am going through this expensive protocol at Cleveland clinic to see. Maybe my immune system really has grown out of its over reaction? Or, by the functional medicine model, maybe I have finally rid myself of the antigens my immune system was quite rightly attacking?
I'll keep you all informed as to how this experiment proceeds.
Wow! I love reading your story! It gives me hope! My igg and beta igg were sky high on 4 occasions. I am hoping to get to a place where my APS antibodies get back into normal range. I have read extensively about AI disorders being caused by a leaky gut and I started an Autoimmune Protocol Diet last year in hopes of allowing my gut to heal and also calm down my immune system. Twelve years has certainly been quite a long time for your bloodwork to be normal, but I understand your not wanting to stop thinners as antibodies can wax and wane.
It's complicated. Don't quote me this might be a bad summary but my understanding goes like this – Auto immune diseases have their first cause in environmental and food reactions. If one can narrow down what the environmental or food offendor is and then treat, remove or avoid them, one can slow, arrest or even cure autoimmune conditions. Its all still very controversial. One reason being that since we're all unique individuals it is impossible to come up with a double blind test that needs the current science criteria. If you are interested, google the limited time only documentary series entitled Betrayal. Or just Google fundamental medicine and read what turns up.
Something more. I have also eliminated dairy while on this diet and greatly reduced sugar and empty carbs. And I felt pretty well since gone gluten-free, didn't think I could feel better. It's only been a few days, but I feel better with way more energy. So I conclude that I'm a bit allergic to dairy.
I have pretty much dropped sugar since out of hospital. (About 6 weeks since surgery) and find anything sweet fairly yukky. For a chocaholic this is good news as Xmas is just around the corner and the shops are laden with goodies! I'm not tempting fate by just trying anything 'just to see' and seeing how I go longer term. I'm mostly gluten free - but find it harder to stick to
I'm also looking forward to hearing how you go, after a quick browse on the net.
Cleveland clinic is using a new web application called "living matrix. "The patient fills out an online questionnaire and then when the information is loaded into the app, a series of timelines appear which make it easier to spot connections and correlations. The makers of the app are selling it and of course there's no way of knowing if any of your providers have decided to give it a try. But you might check the website out livingmatrix.com in case there might be some information there that may make the nutritional detective hunt a bit more productive.
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