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originally posted by: Waterglass
a reply to: rickymouse
I was not born with a full deck of DNA at birth. Never found out until I was 45. I have a mitochondrial disease on the Protein end. Meaning my body cant digest protein among other things. The toxins from it enter the blood stream and your (CK) and Creatine Phosphokinase (CPK) elevate comparable to a person having a heart attack as your body starts to attack your muscles and they enter the blood stream. You get the daily head to toe body aches, pain and infections. Daily. Its like having the flu, daily. My mind blocks it out. I am in shape and am not a fat guy.
The Cleveland Clinic prescribed their "cocktail" of vitamins for me. It consists of 100MG Vitamin C, 800MG Vitamin E, 400MG COQ10, 200MG Vitamin B6 and a baby aspirin daily. I have been on it for almost 20 years. It helps. I am limited to 40grams of protein daily. That's tough to do.
So I keep an eye out on this other stuff. Doctors did say with me exercising I can go into my late 80's. Playing sports probably saved my life as the weak can die from it.
Did it result in a sort of fibrosis in your lungs or something, scarring of the lung tissue?
My heart is perfect. I total cholesterol perfect. The result from the 2005 situation has left a type of seizure on the upper portion of of lung. Daily, it feels as if an elephant is sitting on op of my chest. I have had CAT scans Cardiac MRI, stress test with radioactive iodine and all checks out perfect. I am in good shape. To see me you would never know. I just block it out mentally. I am on NO painkillers. Just the vitamins and three inhalers from the 2005 thing. I also shoot hoops thee times a week and lift weights.
I say fook it all and keep going. I do not feel sorry for myself. Just pissed off. I am not a drop to the knees and pray for mercy kind of guy.
VMP Genetics History & Mission VMP is the brainchild of Dr. Fran Kendall and her husband Michael Kendall. Dr Kendall is a renowned expert in genetics for over 25 years and former founder and owner of a successful genetic laboratory & clinical practice. Our mission is to extend the reach of rare and specialized healthcare to an under served population while retaining the best of old fashion medicine. We do this through direct patient care, education outreach to healthcare professionals, and support services to hospitals and institutions utilizing readily available and cost effective technology.
originally posted by: Waterglass
a reply to: rickymouse
Thanks, my CPK was arond 1000 when I went to the Cleveland Clinic. Now its at the extreme upper level thats acceptable.
Since 2015 I now see Dr. Fran Kendall who is just outside of Atlanta:
VMP Genetics History & Mission VMP is the brainchild of Dr. Fran Kendall and her husband Michael Kendall. Dr Kendall is a renowned expert in genetics for over 25 years and former founder and owner of a successful genetic laboratory & clinical practice. Our mission is to extend the reach of rare and specialized healthcare to an under served population while retaining the best of old fashion medicine. We do this through direct patient care, education outreach to healthcare professionals, and support services to hospitals and institutions utilizing readily available and cost effective technology.
Her next test would exactly point out what my DNA issue is to possibly treat it better. The test costs just under $8000. My Health Care will NOT cover any portion of it.
GeneDx
originally posted by: Waterglass
a reply to: rickymouse
Thanks let me look into.