Tuesday, June 1, 2010

Away we go...What is the Great Food Health Experiment?

What is the Great Food Health Experiment? To apply the Elimination Diet for Allergies in combination with Raw Foods Diet to see if drastic nutritional changes will have a drastic change on my health, medications, and quality of life.  Over the years, I've done single strategy diet changes (low carb, Zone, low fat/high carb, etc.).  Nothing made a long-term difference.

Today is June 1, my personal diet D-Day.

Diagnosed with Cogan's Syndrome Vasculitis in 1998, I've tried the conventional, the non-conventional, and everything in between to stop the progression of this autoimmune disease - a hyperactivity of the immune system that attacks certain blood vessels causing inflammation, decreased circulation and leaves permanent damage in its wake to the blood-starved systems involved. Deafness was the result of my first system to starve out. My eyes and heart are potential future candidates and have already shown symptoms that have been kept in check with medications. Skin and other larger organs can also be involved. Many of these are not “typical” Cogan’s Syndrome so my doctor’s believe I may have “Stacey’s Syndrome” meaning I fit Cogan’s to a point, but have a large range of vasculitis symptoms that are not common in my diagnosis code.

The biggest risk for me is medication side effects. To control my immune system, I take very high doses of prednisone daily. The side effects from this powerful corticosteroid are diabetes, blood pressure flux, joint and bone deterioration, and decreased mental acuity among many other less scary but life-impacting symptoms. Nothing, to date has suppressed my hyper immune system except the high doses of daily prednisone. One treatment was even wiping out my immune system similar to what cancer patients do before a bone marrow transplant. The re-grown immune system came back a bit beaten down but still attacking and requiring daily prednisone.  Sigh.

With everything that I've tried, I'm left to "guinea pig" very new immune suppression drugs that are given via IV.  They are risky and new, so long-term effects of treatment are unknown.  I'm willing to try them because I have little choice besides deterioration if I don't.  I'm not one to sit by and watch things fall apart.  You have to make choices to make change, so I choose to try and accept the unknown risks.

That said, the idea of taking on the diet-duo is this:  If one of my trusted doctors came to me and said, "Stacey, here is a medication that will maintain your health, but it cannot be taken with many foods.  These foods will negate the drug and make it not work."  If this was the situation, would I stop eating those foods so the medication would work?  YOU BETCHA!  So, if the same thing can be possible minus the medication, why not try?  I'd be a fool to not give it a few months.  No harm can come from eating a excess amount of greens, good fruits, nuts and a wee bit o' sashimi. : ) 

So, off we go....Let the games begin!


  1. I'm in! Way to go on getting this up and running. Your own personal internet databank. Very excited to be part of this experiment.

  2. I hear ya Stacey!! The meds the meds and the meds.. We can be healed if not cured. Don't you hate those words rare and incurable!!!?

    Wish you the best and waiting to see how this journey impacts your health and life!!