Jeannie's Story - Hep C

Jeannie's Story

A woman believes she can peacefully coexist with the virus that causes hepatitis C.

By Caren Benjamin Review-Journal

Jeannie Geiser shows up for an interview wearing a "hep-fest" T-shirt. Her boyfriend is a fellow "hepper" -- a term she admits not everyone is comfortable with. They were introduced by a mutual friend because he needed someone to talk to, someone else with hepatitis C, and Geiser seemed a good choice.

Geiser has organized fellow heppers from around the country to meet with their elected representatives in Washington. "I was always like that. I was always the Cub Scouts mother, organizing things," she laughs. "I'm just a very upbeat person."

Geiser doesn't know how she got hepatitis and doesn't particularly care. "I was a 60s kid. I didn't miss much in life. I still don't," says Geiser, who is now a proud grandmother. "I tell people you shouldn't get all freaked out about how you got it. It's not important. The important thing once you have it is just to go with the flow."

If she had to guess she would say it was probably in the 1970s, around the same time she contracted hepatitis B.

Geiser learned she had hepatitis C in 1996 when she got tested because she was tired all the time. Back then she had heard of hepatitis A and B but "had no idea it extended beyond the alphabet."

Her doctor told her to change her diet and lifestyle and she would be fine. "I was happy. I wasn't curious about the disease. I didn't want to know any more about it," she says. It was only when her insurance changed, and with it her primary care doctor, that her "mind got blown."

The new doctor refused to treat her because of the seriousness of her disease and sent her to a gastroenterologist who insisted on a liver biopsy. The test showed she had some dead or dying areas of her liver, but it hadn't become cirrhotic. "He told me I needed to get on interferon right away or I would die," she remembers. Geiser just wasn't comfortable. "You know when your guts are telling you someone is shoving something down your throat, like 'I'm god. I'm the doctor.' " She was terrified.

So she told him she would "think about it," and never came back. Instead she got on the Internet, typed "hepatitis C" into a search engine, and found a world of friends, contacts, information, even vocabulary.

She found "hepper helpers" who spend time with "newbies" online helping them understand and become comfortable with the disease and make choices. Her first two contacts had been treating their illness with dietary supplements or "nutraceuticals" for years and said they felt great. That coupled with the low odds on interferon by itself -- the only available treatment at the time -- convinced her to stay off the drugs.

She also was convinced by her own experience with hepatitis B. When she was in the hospital for that "all they did was feed me," she remembers.

Geiser went on a low-fat, mostly vegetarian diet and cobbled together her own complex treatment of vitamins, herbs and other natural products that she asks not be published because "the most important thing is to work with a physician."

The total package of herbs and nutritional supplements costs her about $125 a month, all out of pocket because her insurance won't cover it. She also went to a chiropractor for kinesiology, a treatment that involves hitting pressure points in the body, supposedly to stimulate the immune system. She had to stop eventually because of the cost.

The nutraceuticals regimen started with a product designed to stimulate the thymus gland and sold over Internet by a former gynecologist who himself had hepatitis B and claims on the Web site that he cured himself and others by taking the supplements.

Another friend introduced her to Dr. Michael Schlacter, who spoke at a meeting sponsored by a company that markets supplements called glycoproteins. Schlacter is not employed by the company but the supplements are marketed directly through users so he gets a commission if someone buys the product.

Geiser describes these supplements as "organic vegetables in powder form."

Glycoproteins are molecules on the cell walls made up of amino acids and simple sugars. According to Schlacter, cells communicate with each other by reading these molecules. But most people are lacking at least some of these simple sugars in their diets and so communication between cells is interrupted, Schlacter says. Viruses may further interrupt this communication.

The theory is that adding the sugars back to the diet allows cells to do what they are supposed to and helps them fight off the virus, Schlacter explains.

Schlacter is board certified in internal medicine and pulmonary disease. He is resigned to the fact his fellow physicians may well brand him a heretic for his view that allopathic medicine, with its "one drug, one disease" focus, is not always the best way to treat health problems.

But, he says, "the truth is the truth." Geiser, too, has heard the detractors who say there's no real Science behind the nutritional advice she has gotten. But she thinks she understands enough about her body and her disease to make her own decisions. That was part of what appealed to her about putting together her own treatment. "If I understand something it takes away the fear."

She sees a physician's assistant regularly and though the virus is still in her system she says she is "healthier than the average person"and she is sure she and hepatitis C can peacefully coexist.

Jeannie

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