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ELISA -- a lie that can kill you?

ALS -- a hopeless diagnosis

MS Crisis in Lorain County?

FEATURE ARTICLE from The Times Leader (Northeastern Pennsylvania), 7-21-03, By MARY THERESE BIEBEL

``Lyme a hidden danger, doc says

WILKES-BARRE - For 15 years, Monsignor Bernard Yarrish accepted that multiple sclerosis was his cross to bear.

As his symptoms worsened, the local clergyman called on a priestly philosophy to cope with the blurred vision, loss of balance and difficulty walking and standing.

"It's minor suffering compared to what Christ endured," he said. "But it's never been easy."

Then, earlier this spring, Yarrish's burden suddenly became lighter. A physician from suburban Philadelphia, the "one more doctor" a friend urged him to consult, said he didn't have MS, but Lyme disease, a tick-borne illness that can attack the nervous system.

"It was nothing short of a miracle. I was much relieved," said Yarrish, 52, who was recently named vice rector at Pius X Seminary in Dalton after serving as pastor of St. Boniface Church in Wilkes-Barre.

The priest, once a regular jogger and squash player, believes a long term regime of antibiotics, vitamins and exercise will bring back much of the ease of movement he lost. His new doctor thinks so, too.

"We've had well over 100 cases where we've gotten people out of wheelchairs," said Dr. Greg Bach ...

Bach had good news for Yarrish - a diagnosis of a treatable illness instead of a disorder for which there is no known cure. But the physician has sobering news for the rest of us.

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Although the national Centers for Disease Control reported 17,000 cases of Lyme disease last year, Bach believes the actual incidence is much higher.

As evidence, he points to 387 confirmed cases of Lyme disease.

He said "only 8.7 percent (of those cases) showed positive" in a widely used ELISA test. The acronym stands for enzyme-linked immunosorbent assay, and the test checks the blood for antibodies that develop in response to the bite of an infected tick.

Since the ELISA incorrectly indicated that 90 percent of those infected people were free of Lyme disease, Bach has no use for it. "It's an antique. It should be taken off the market," said the doctor, who prefers a more sensitive "Western Blot" test.

[For those who want to know whether or not they are still infested with spirochetes, have your Lyme Literate MD order the RIBb test:

JoAnn Whitaker, M.D.

Bowen Research and Training Institute, Inc.

P.O. Box 627

Palm Harbor, Florida 34682

Tel: 727-937-9077

Fax: 727-942-9687

www.bowen.org

bowenresearch@earthlink.net]

Without sensitive tests, Bach said, thousands of people with Lyme disease may be told they have arthritis, fibromyalgia, Lou Gehrig's disease or multiple sclerosis.

While they're treated for the wrong illness, their conditions may worsen - and result in anything from chronic fatigue to vision problems to crippled limbs and, in rare cases, fatal heart and lung problems.

"People have to stop thinking (Lyme disease) is a joke," said Bach, whose wife, Debra, suffered through a bout that affected her vision years ago. "We've got a problem." ...

The Rev. Anthony Urban, pastor of St. Elizabeth Church in Bear Creek, is as eager as Bach to share information about the tick-borne illness. Two years ago, he found out Lyme disease was the cause of his tremendous pain.

"I was told I had rheumatoid arthritis and went to about eight different physicians," Urban said. "There were times I couldn't walk. ... I could barely get through Mass. I had an 80-year-old altar server who used to help me off the altar and I'd ask, 'What's wrong with this picture?' "

After Urban found his way to Bach's Family Practice in Colmar two years ago, he began taking antibiotics intravenously.

"I'm walking, I'm feeling better, I don't have constant pain and I don't take narcotics. At one time I was on many, many drugs," said Urban, who was so pleased with his progress that he convinced Yarrish to consult Bach ...''

Contact Mary Therese Biebel at marytb@leader.net

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NEWS ARTICLE from The Statesman Journal, Salem, Oregon, 8-1-03, By SUSAN TOM

``Lyme disease tough to diagnose

When Kara Chytka found out that she had Lyme disease, she cried tears of joy.

For months, the mother of three thought that she had Lou Gehrig's disease [ALS -- amyotrophic lateral sclerosis], a progressive neuromuscular disease with no cure. Doctors gave her between 18 months and five years to live.

Lyme disease was a reprieve from the death sentence.

With treatment and luck, the 25-year-old Aumsville resident could recover some of her physical abilities. Her speech is slurred and she still needs help with personal care, but she now can use a walker.

Although there are more than 16,000 cases of Lyme disease in the United States each year, health experts say it often gets misdiagnosed in areas where it is not [thought to be] prevalent, including Oregon.

Chytka's story is an example of how people can help themselves by taking an active role in their own health rather than accepting a doctor's opinion without question.

"I didn't believe it," she said of the Lou Gehrig's disease diagnosis. "I read the symptoms, and I had so many other things besides them."

Chytka began researching the symptoms on her own out of desperation and defiance, looking up diseases and doctors on the Internet. One response eventually led her to a San Francisco specialist, and in March he diagnosed her with Lyme disease.

Now, Chytka and her husband, Chris, are urging people to learn as much as possible about their illnesses and seek a second and even third opinion.

"She's very stubborn, and if it were not for that, and not believing the doctor's diagnosis, she'd be sitting around waiting to die," Chris Chytka said. "This is proof that doctors don't always know what they're doing." ...

Many doctors don't consider Lyme disease when making a diagnosis because there are [supposedly] so few cases in Oregon, said Dr. Rafael Stricker, a San Francisco hematologist who has treated about a dozen Lyme-disease patients from Oregon, including Chytka.

The symptoms, which include joint pain, flulike fevers, fatigue and paralysis of the facial muscles, are shared by other diseases such as multiple sclerosis and Lou Gehrig's disease, also known as ALS, or amyotrophic lateral sclerosis. Most people don't remember being bitten by a tick and don't get the rash associated with Lyme disease.

"What's even worse is doctors saying nothing is wrong and it's all in your head," Stricker said ...

For Chytka, about five months passed between the ALS and Lyme-disease diagnoses.

When she was diagnosed in October with ALS, she was shocked. The thought of leaving three children, now ages 6, 4, and 2, without a mom was agonizing.

"I was not going to let (the disease) tell me how I had to live," Chytka said as she mopped tears from her eyes.

That was when she began searching for answers herself.

Dr. Elizabeth Blount, Chytka's family doctor in Silverton, said she is treating Chytka for Lyme disease despite the conflicting diagnoses. Oregon Health & Science University, where Blount sent Chytka last year, said it was ALS. Stricker, the San Francisco specialist, diagnosed it as Lyme disease, but a second opinion from a Salem specialist said it was not.

"I'm not sure what to believe," Blount said. "There's an outside chance she could have both."

Although both diseases have similar symptoms, Lyme disease often causes arthritis and inflammation, and ALS isn't associated with pain, Blount said. She also supported Chytka's desire to try the antibiotic because the family wanted hope.

"When you have a hopeless disease with no treatment, people will try anything," Blount said.

But Stricker, the San Francisco doctor, said that Chytka has the neurologic form of Lyme disease, which is severe and does not respond to antibiotics like the other types. It is hard to know how much of her abilities she will recover, but Stricker said he has been impressed with her recovery and response to the antibiotics. He will have a better idea within a year.

"It also depends how long the disease goes without being treated," Stricker said.

After a week on the new IV medication, Chytka is making visible improvements, said JoElla Coleman, Chytka's caregiver and cousin by marriage.

"She's getting stronger," Coleman said.

At her worst, Chytka's hips, knees and joints hurt and she had some swelling. Her toes sometimes were numb and she was losing her grip strength and use of her hands. Her reactions slowed, her speech slurred and she was falling a lot. She had to concentrate hard to get the messages to her brain to move her body.

Now, since the new drug therapy, Chytka can take a few steps with the help of a walker ...''

Susan Tom can be reached at stom@statesmanjournal.com

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NEWS ARTICLE from The Morning Journal, 1-28-04, By MIKE SAKAL, Morning Journal Writer

``Lorain County tops list in federal MS study

ELYRIA -- As a federal study of multiple sclerosis cases nears its sixth year, it shows that Lorain County has the most confirmed cases per 100,000 people when compared to cities in Texas and Missouri, according to Lorain County Health Commissioner Kenneth Pearce.

The case prevalence study conducted by the Atlanta-based Agency for Toxic Substances and Disease Registry [ATSDR], an arm of the Centers for Disease Control and Prevention, identified MS cases and revealed that Lorain County has 164 MS cases per 100,000 people, Pearce said.

Sugar Creek and Independence, Mo., have 90 MS cases per 100,000, and Lubbock, Texas, has 64 cases per 100,000 people, according to the ATSDR study, Pearce said.

The number of MS cases in Lorain County was 422 as of June 2003, according to the study.

Lorain County, Sugar Creek, Independence and Lubbock were studied because of a perceived high number of MS cases, Pearce said.

In the area of Wellington near the former Sterling Foundry there were about 25 MS cases reportedly discovered by Wellington residents in 2001, which was alarming, Pearce said.

The study began in 1998, and there is no timeline for it to be completed, said Robert Indian, head of community health assessments for the Ohio Department of Health, which has helped with the study in Lorain County since 2001. Lorain County was researched between 2001 and 2003, Pearce said ...

''Actual cases we identified as MS cases had to be diagnosed by a doctor and be backed with an MRI,'' Pearce said ...

Results from Missouri showed ''no statistically significant increase in the number of residents with MS between Sugar Creek and Independence, and the Lorain County and Lubbock studies aren't quite complete,'' said Paula Stephens, a spokewoman with the ATSDR.

''People had raised concerns over a perceived increase in MS cases,'' Stephens said. ''There is a former petroleum refinery in Sugar Creek, and there were a number of MS cases in that area but not enough that it was alarming.'' ...

NEWS ARTICLE from The Morning Journal, 1-30-04, by Tara York Ellis, Morning Journal reporter

``Health official breaks down recent study

A study on multiple sclerosis cases done by the federal and state governments in conjunction with the Lorain County General Health District shows that Lorain County has the most confirmed cases per 100,000 people when compared to cities in Texas and Missouri, according to Kenneth Pearce, the Lorain County General Health District's health commissioner ...

In the area of Wellington near the former Sterling Foundry there were about 25 MS cases reportedly discovered by Wellington residents in 2001, which was alarming, Pearce said.

Pearce, 53, is in his 30th year of working for Lorain County's health department, and has been at work on this MS study for about six years, he said ...

QUESTION: The study is in its sixth year, and 422 MS cases were reported in Lorain County as of 2003. Has your office made any changes to deal with this growing crisis?

A. I wouldn't call it a ''growing crisis.'' We went out and started looking at this issue as a chronic disease to see if we could make an effort to contribute to the overall body of knowledge.

Q. What more is your office going to do?

A. If there's anything further the Ohio Department of Health or the Agency for Toxic Substances and Disease Registry felt we could do, beyond what we've done, we'd be more than happy to sit down and talk about it.

Q. Why do you believe Wellington has such an MS problem?

A. What do we believe about Wellington? It's not so much what we believe about Wellington, but this is a departure from what we think is normal. We don't know the natural history as to what causes MS, so to take the leap and say, ''It's the water supply'' or ''It's the foundry'' or ''It's a farming community'' would be wrong at this point. We're not at a point where we can pinpoint that. Why Wellington? I don't have an answer because we don't know the cause.

Q. Is your office doing anything in particular about the Wellington situation?

A. No. Because there isn't anything to do. There's no knowledge that we have that indicates there's anything to be done.

Q. Do we have to wait on a cure of MS in order to make life healthier for those living in Lorain County?

A. There's a tremendous amount of research being done to help people with MS live better and maintain a good course of life. There's better medicine, and good neurologists who understand this better than before. There's no known cause; there is a genetic component, but it's not genetically caused.

Q. What can people in Lorain County do if they are concerned?

A. There isn't any known course of action anyone can take to prevent the disease. Just don't smoke; eat right and get plenty of exercise. That will make your immune system stronger. Will that prevent someone destined to get MS from getting it? That I don't know. But the healthier you are, the easier it is to fight off any disease. In general, just try to keep healthy.''

Interview conducted by Morning Journal reporter Tara York Ellis.

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