Monday, March 24, 2014

2011...

2001, I called a doctor in Berkeley. He agreed to see me.  After a short meeting, Dr. Smith said ( reassuringly that we would get to the bottom of this.  I giggled and told him, with no disrespect, I have been told that before!  He sent me away with a battery of test to be taken; the first, blood.  He said do the blood test and let’s get the results before you do all the other tests.
10/23/01 Blood was collected.
10/30/01 Phone call from Dr. Smith “quit eating and consuming all forms of DAIRY!  You are killing yourself!    That day I stopped eating all dairy.  Soon thereafter, off all meds and my seizures miraculously stopped.   Who know... a dairy allergy.  (Now, what I have not shared was in the prior ten years doctors told me to eat cheese for protein... every two hours!  Well, that only kept me in a sick state.  No doctor has verified or confirmed this, but, when I was my sickest, my "mean" blood sugar fasting was below 60.  Well, your organs STARVE at that low of a blood sugar.  My system was attacking the allergen, dropped my blood sugar and wella, seizure!)
 
I can't be the only person who has had this type of experience, and if I didn't continue to explore options, I would still be on anti-convulsive meds and not having the full life I now live. 
Until about two years ago, this was my little secret.  If you were having Grand Mal Seizures and didn't know the real cause of them, wouldn't you be living with a huge secret too?  Now I realize how important it is to share my story… I know I am not the only misdiagnosed person living with an allergy that causes me to have seizures when the smallest amount of dairy was/is consumed.

1972, In the beginning...

1972, when I was 9 years old, I had been having grand mal seizures.  At around age 17, with concern of my drivers license, a neurologist ran a battery of tests, only to tell me that they didn't know why I was having seizures, but take this medicine Tegretol so he didn't have to report me to DMV.   The medicine did not work.  I knew in my heart I didn’t have epilepsy, but did not know what was going on. 
I was told that perhaps I grew too fast.  Hypoglycemic.  Pre-diabetic. I asked to be tested for allergens but was told "what do you think you are allergic to?"... when I said I didn't know they said they don't just run a battery of tests when you have no allergy indications, and seizures are not related to an allergy.
Every year I would go to different types of doctors to figure out what was wrong with me.  EKG, MRI, Brain Scans, Chinese medicine, acupuncture, chiropractic... nothing worked, until 2001.

First Post....

I'm what?!
Until recently, it was too scary to share my story.  Then it occurred to me, I can't be the only person with my experience...a simple misdiagnosed allergy to CASEIN.  (and I mean, missed diagnosis, out of the ball park, didn't even think of checking for a food allergy!)  If you are reading this, you either have issues, are looking for answers or something... I hope that my sharing might help you or someone you know, because life is too short to feel or be sick!