Porphyria Educational Services

PORPHYRIA EDUCATIONAL BULLETIN Vol. 1 No. 21 May 23, 1999
The Question of Vitamin C and Porphyria

Porphyrin loss of hydrogens from the porphyrinogens generally turns them into porphyrins. These are which are the cause of the porphyrias.

Hydrogen or electron donors, such as vitamin C, are believed to inhibit the transformation of porphyrinogens to porphyrins. Also, vitamin C will facilitate the conversion of the products to cytochromes. Another name for Vitamin C is that of ascorbic acid. There is also the conversion to hemoglobin, reducing the buildup of intermediate products in the above pathway.

Some forms of porphyria are believed to involve the mitochondria. This causes a reduction in energy conversion. This can cause a spirt of chronic fatigue. Many porphyrics talk about having chronic fatigue.

One of the things to be aware of in the use of large amounts of vitamin C is that Vitamin C is thought to be one of the causes of kidney stones. Researchers think that anything in excess of 1,000 grams of ascorbic acid in one day may lead to the production of kidney stones.

It is interesting to note that porphyria patients sometimes talk about losing salt or craving salt. Salt is conserved in the kidneys by the exchange of the sodium ions for hydrogen ions. During every acute attack it is important to be sure that you maintain your electrolyte balance. Sodium is a part of that electrolyte balance. One may consider that as sodium levels decrease, additional stress is placed on the hydrogen ion sources. This will cause an increase in the generation of susceptible individuals.

One such stress may be the need to generate more cytochromes during exposure to environmental toxins or therapy with inappropriate pharmaceuticals.
Studies show that about one -fifth of all pharmaceuticals are detoxified by the cytochromes. This will then place additional burdens upon the porphyrin related pathways. Fun right?

So the bottom line is that individuals with porphyria may be seriously harmed by doctors without specific training and information related to porphyria. Be sure to interview physicians before you allow any testing or consultation. Most will allow a short interview. Be specific and ask the right questions geared at your specific needs.

Not all porphyria victims report benefit from high doses of vitamin C, but there are often other issues involved, such as yeast infections. Many women porphyrics have expressed the burden of the continuous strong of yeast infections. These other conditions need to be addressed before benefits of high dose (bowel tolerance) vitamin C therapy can become evident.

Yeasts are a particular problem.
When a porphyria patient utilizes a high carbohydrate it can at the same time encourage yeast overgrowth.
Sometimes various C Salts are useful. If one listens to what one's body is saying, one stands a better chance of doing the right thing.

Porphyria patients often report that doctors, particularly those in HMO's, are not well versed, and sometimes appear unwilling to run all the proper tests to confirm a diagnosis of porphyria.

Even in private care, misdiagnosis and improper treatments are not uncommon.
Indeed as many porphyria patients say improper and often dangerous treatments are the rule, not the exception, when dealing with doctors who have no special training for dealing with porphyria. Unfortunately for porphyria patients a great majority of physicians still do not know about this disease.

As porphyria patients, each of us must take personal responsibility in sharing all porphyria information with the physicians who treat us. Through such exchanging of ideas comes knowledge and eventually help for the porphyric patient!