Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Monday, December 19, 2011

The Connection between ME and Gilbert’s Syndrome

For as long as I can remember, whenever I received the results of a blood test, doctors noted that I had elevated levels of bilirubin. Bilirubin is a substance created by the liver that breaks down dead red blood cells. If you have high levels of bilirubin, you are considered to have Gilbert's (pronounced "jeel-bears") Syndrome. It is a genetic trait, which in my case, I inherited from my mother. When I would ask what it means to have Gilbert's, the doctors would always say that "it's an insignificant finding." "It doesn't harm you." But I always wondered, why is there a name for it? Why is it called a syndrome? And why do the blood test results list a "normal range"?

Incidentally, the normal range for bilirubin is 0.2 - 1.2 mg/dl. My results typically run between 1.4 and 1.8. This is mildly high. People who have severe cases of Gilbert's run in the 3.0 - 4.0 range, and they often appear yellow and jaundiced. Thankfully, I don't have yellow skin.

Dr. Charles Shepherd, an English researcher of ME, found that Gilbert's is often associated with ME. His studies showed that 16% of people with ME have Gilbert's. Conversely, a website on Gilbert's states that ""People with GS are four times more likely to have Chronic Fatigue Syndrome than others." What's more, the symptoms of people with Gilbert's sound identical to ME's symptoms (see link above). Could it be that many people who report suffering symptoms of GS actually have ME, triggered by GS? I think so.

There are a few well-known supplements to aid liver function, the most popular of which is milk thistle. In the near future, I may experiment with milk thistle to see if it helps my ME.

[3/22/12 update: I've been talking milk thistle capsules 3x/day since January and have not noticed a difference in how I feel, although one blood test in late January showed my bilirubin within normal limits for the first time in my life! A subsequent blood test, however, was elevated again.]

On a positive note, Dr. Rich VanK, who is famous for his CFS research, recently noted in a message board discussion that he has mild Gilbert's, and added the following:
...But the cool thing about Gilbert's syndrome is that it has been found to provide protection against coronary artery disease. It is thought that this is due to bilirubin acting as an antioxidant.
Waiter! Extra helping of mutton, please!

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