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Porphyria |
If you do a search on Porphyria, you will find a lot of technical information that can be quite overwhelming. If you keep digging, you will find contradictory information on diets and drugs. Even though the situation is very confusing, it is actually getting better...more and more doctors are actually aware of it, now. Up until recently, the only doctors that I encountered that knew of Porphyria were from India or Arabia. The lone exception is my dentist; who is careful with anesthetics and exorts me to exercise vigorously after any procedures requiring anesthetics. |
I've got Acute Intermittent Porphyria (AIP). The "intermittent" part of the name refers to the severe attacks; the problems are chronic. No matter what kind of porphyria you have...there are 7 kinds...you have to constantly watch your diet and exercise. |
Summary: * Take care of your liver; this is where all of the problems with heme occur...at least in AIP & I would expect, from my studies, that this is the case for all 7 types. |
...lots of fruit ...lots of vegetables ...avoid fried foods ...avoid animal fats ...avoid seeds, nuts, corn (diverticulitis) ...keep a high carb content & low protein, low fat content |
...avoid alcohol ...take milk thistle ...eat right ...exercise frequently & sweat ...drink plenty of water ...take as few drugs as possible |
* Diet |
A little history may help you. When I was younger, there were many visits to the doctors with unexplained stomach pains. Also, I had problems with hypoglycemia (low blood sugar). One time, when I was having terrible stomach pains, the doctor gave me a shot of Donnatol (belladonna) & the pain went away instantly. Miraculously, the doctors discovered that I had "irritable bowel"...whenever, you hear this term it means they haven't a clue; but, the pain will go away if you do "...". In my case, belladonna was the miracle cure. Actually, what was happening was that my colon was going into spasms whenever there was a porphyria attack. Belladonna is a smooth muscle relaxer; so, this calmed down my colon. I soon figured out that apple juice gave my liver a kick of pure sugar that it needed to have enough energy to deal with the attack. In addition to the "irritable bowel" and the hypoglycemia, I had an emergency gall bladder removal. The doctors had the attitude of "these things happen" and that there was no underlying cause. There is no doubt that all the garbage coming from my liver killed it. Also, they don't tell you that the gall bladder is instrumental in dealing with excess acid on your stomach and digestion of fats. So, if you have you gall bladder removed & you don't cut down on consumption of fats and watch causes of acid stomach, you are going to be very unhappy. You will also loose a lot of sleep to acid reflux. |
* side effects |
...susceptibility to infections; your liver can't fight off problems while spending so much energy dealing with porphyria. ...diverticulitis; spasms during attacks cause damage to the colon ...weight gain, if excess carbs are in the form of pastas, breads, etc. |
* Other suggestions: |
...flush your nose / sinus with saline; there are products available at grocery / drug stores ...occasional bacteria blooms in your eyes can be corrected with baby shampoo ...when you feel an attack coming on, epsom salts will relax the colon & apple juice will give your liver the energy to fight the attack |
I will be adding much more to this page. If you have anything to add or have any questions, you can contact me at mortar@mortarandpetals.com. |
Disclaimer: I am not a doctor & I don't play one on TV. I have porphyria and am sharing my opinions. The laws and rules were written by and for the AMA (association for doctors benefit) and big pharma...only they can heal or cure. So, go see a doctor; but, remember, you are responsible for you own health. |