Misdiagnosis- A Common Problem

Hi my friends,

I have copied this article from Mercury News and Patty Fisher. It is another fantastic article of another victim of Lyme disease that was misdiagnosed. Isn't it truly amazing that are so many of us that are misdiagnosed. Hopefully, each of us in our own spheres of influence will increase the overall awareness of this awful disease. Fine articles such as this one written my Miss Fisher certainly shed more light on this problem.

Be well,
Richard

Fisher: After long struggle with Lyme disease, Bart's going home

By Patty Fisher

pfisher@mercurynews.com

Posted: 07/29/2010 03:51:06 PM PDT

Updated: 07/29/2010 05:19:58 PM PDT

Click photo to enlarge

Bart Fenolio, left, gets help as he walks down the hallway at A Grace... ( KAREN T. BORCHERS )

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Bart Fenolio still tires easily, needs a walker to get around and has occasional memory lapses. He knows it could take years for him to overcome the devastating effects of chronic Lyme disease.

But for a 70-year-old guy who had been told he was dying of Lou Gehrig's disease and couldn't breathe on his own or pick up a cell phone when I saw him six months ago, Fenolio looks pretty darn good. And he is counting his blessings.

"I'm just so lucky to have a family and so many friends who could advocate for me," he told me Thursday as he prepared to leave the San Jose nursing home where he has been recovering since December. "I've lost a lot of muscle mass — I've got no buns — but I'm finally on the road to recovery."

In January, I told the story of the former San Jose State track star, classic-car nut and golfer who contracted Lyme disease from a tick bite but was misdiagnosed with amyotrophic lateral sclerosis, an incurable illness. The longtime owner of a Campbell tropical fish store was bitten by the tick while walking his dog in Morgan Hill seven years ago and began to develop symptoms two years ago.

Only through the persistence of Heidi, his wife of 46 years, and their scientist son and social-worker daughter was Bart given a series of Lyme tests that came back positive. He says his doctors at Kaiser Permanente insisted he had ALS even though he began to improve with antibiotics, and he left Kaiser to get the

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treatment he needed.

Fast-growing disease

Lyme disease, a bacterial illness spread by ticks, is the fastest-growing infectious disease in the country, with 28,921 confirmed cases and 6,277 probable cases reported in 2008.

First identified in Connecticut in the 1970s, it still is not understood. Tests for Lyme are notoriously unreliable, and it can masquerade as Parkinson's disease or arthritis.

After I wrote about Fenolio's case, I was inundated with inquiries from people with similar stories and those who suspected they might have the disease. I have been referring them to the California Lyme Disease Association at http://www.lymedisease.org/.

Since then the Fenolios, who retired to San Diego four years ago but came back to the Bay Area to find a Lyme specialist, have been living here, Bart in a nursing home and Heidi with friends in Saratoga. They have become strong advocates for Lyme education.

"We have met so many people who were misdiagnosed," Heidi said.

"There's so much of it out there," Bart added, "but people don't realize it."

Legislation that would provide more money for research and testing for Lyme is inching its way through Congress. But advocates for patients with chronic Lyme suffered a blow in April when a federal review panel refused to endorse the use of long-term antibiotics, saying that treatment posed too great a risk of side effects.

The panel's decision infuriated Bart and Heidi because they are convinced that the antibiotics he has been taking since October saved his life.

"Why withhold treatment when you've already got a death sentence?" Heidi asked. She is confident that some day Lyme will get the attention it deserves. But for now, patients have to fight for treatment.

"I always say we're just five years too early," she said.

The disease has taken its toll on the family financially as well as physically. Medicare has picked up much of the cost of Bart's treatment, but the Fenolios have spent about $100,000 of their savings.

"It's been a real journey," Heidi said, shaking her head. "I don't even know how to describe it. This week especially has been just horrible for him because he can't wait to get home."

At last, Bart's wait is over. This morning, he and Heidi are scheduled to fly to San Diego, where their daughter will meet them in Bart's 1939 Ford woodie wagon. A procession of woodies driven by members of the San Diego Woodie club will escort them home. Then Bart will be able to sit in his backyard by his koi pond, feel the ocean breezes, enjoy Heidi's veal scallopini and sleep in his own bed for the first time in a year.

"It will be so good to get him home," Heidi said. "Just to be able to hold his hand during the night, I can't even tell you."

Contact Patty Fisher at pfisher@mercurynews.com or 408-920-5852.

Living with Lyme Disease

WMUR-TV, Channel 9, Manchester, New Hampshire has produced a great six part video production called Living with Lyme. It is a must view for anyone wanting an understanding of the severity of Lyme disease on a growing population of victims. Please take the time to watch these short videos.

Be well,

Richard

The entire program is available online in six parts:

Living With Lyme Disease Part 1 of 6 (7:10)
http://www.wmur.com/video/24259080/index.html

Living With Lyme Disease Part 2 of 6 (7:15)
http://www.wmur.com/video/24259091/index.html

Living With Lyme Disease Part 3 of 6 (10:57)
http://www.wmur.com/video/24259097/index.html

Living With Lyme Disease Part 4 of 6 (8:35)
http://www.wmur.com/video/24259277/index.html

Living With Lyme Disease Part 5 of 6 (5:44)
http://www.wmur.com/video/24259318/index.html

Living With Lyme Disease Part 6 of 6 (4:29)
http://www.wmur.com/video/24259612/index.html

Hello again my fellow Lyme sufferers,
Below is another great article which describes the all to often history of those of us who are inflicted with Lyme disease. It comes from the Lakeland Times from Wisconsin. No matter where across the country, the stories are much the same. Here is some more evidence that antibiotic therapy does hep people with Lyme disease.

Be well,

Richard

Begin Quoted article

Leah Gernetzke
Reporter

Friday, July 02, 2010


In a matter of weeks, John and Jillayne Waite watched their healthy, 30-year-old daughter, Jennifer Kane, spiral headlong into debilitating, mysterious illness.

Seven years later, she still hasn't fully recovered.

"No one should have to get sick like this anymore," Kane's mother, Jillayne Waite, said.

That's why they've become outspoken advocates against the culprit of her weakened state - chronic Lyme disease - by attending conferences and presentations by Lyme disease specialists and other health care officials.

The most recent presentation, held by the Centers for Disease Control and Prevention (CDC) in Wausau Thursday, June 17, featured Diep Hoang Johnson of the Wisconsin Department of Public Health, and Ben Beard, the chief of the bacterial diseases branch in CDC's division of vector-borne infectious diseases, who gave an overview of the disease in its stages of severity, as well as prevention tips.

According to their presentation, about 28,921 cases of the disease were confirmed in the United States in 2008, with thousands more estimated to be unconfirmed or simply unreported.

"Now it's the most common vector borne disease in the United States," Beard said. "We often think it doesn't get the respect it's due. There's some 70 or 80 diseases and conditions reported each year to the CDC and we tabulate those ... Lyme disease is actually number seven on that list."

However, several Lyme sufferers at the presentation voiced the opinion that the CDC tended to focus too heavily on surveillance of the disease and recording the numbers.

"We're tired of the statistics," Waite said. "Dr. Beard was a good presenter, and did present a lot of facts - but he still wasn't able to answer the question, what can the CDC do to help someone like Jenn?"

Instead, she said they should focus more on developing and enforcing better diagnostic methods so acute Lyme disease doesn't have a chance to progress into chronic Lyme disease.

Both Beard and the Waites placed an emphasis, first and foremost, on creating better tests.

Beard estimated that the most common tests for Lyme disease, called ELISA and Western Blots, are only 50-60 percent accurate - and in fact, a 2007 Johns Hopkins study showed that as many as 75 percent of patients with Lyme disease test negative using these common tests.

Better doctor education is also key to early detection - many practitioners commonly believe that a bullseye rash, called erythema migrans, must be present in order to diagnose a patient with Lyme disease. However, according to the CDC, the rash is not present in all patients.

Lyme disease, known as "the great imitator, also mimics the flu and other illnesses such as lupus, chronic fatigue syndrome, fibromyalgia and many more, making misdiagnosis common.

Kane was just one patient who slipped through the cracks after testing negative.

"I knew I was bit by two ticks, kept the ticks, but I never got a rash, so I thought, oh I'm fine. And then when I started to get sick, I said, 'could this be Lyme disease?' And I tested for it and came back negative," she said.

But two months after she was bitten in March 2003, she began to exhibit neurological symptoms, especially headaches.

"They were excruciating headaches, like a band around my head, exactly where your cranial nerves are," Kane said. "It just blows my mind now, knowing what I know, that doctors never said, 'oh, those are your cranial nerves, let's look into this.'"

She also became paralyzed and experienced Bell's palsy, or facial immobility.

"My whole body would be paralyzed ... I'd be awake but I couldn't move," she said. "It's scary. You're a 30-something-year-old person thinking you have the whole world in front of you and all of the sudden you're bed-ridden and can barely function."

Kane underwent a gamut of treatments, including cortisone injections, narcotics and a peripheral nerve stimulator that intercepts pain signals to the brain.

"They were constantly treating the symptoms. The bacteria from the tick was in my body. It continued to grow and grow," she said. "Your blood stream can only handle so much of the bacteria, and then it's like the apartment gets full and starts infecting other parts of your body. I personally have had problems with my bone marrow, my spleen and my heart."

At her lowest point, Kane said she dropped to 90 pounds and spent every day with her head under a pillow.

As a result of the pain, Kane could no longer help run Cedar Creek products, the business she owned with her mother, or enjoy the active lifestyle she once had.

"I was doing 20 trade shows a year, I was on the road doing sales," she said. "I was extremely active, my husband Eric and I loved to bike, mountain climb, hike, fish ... My son was two and a half when I got ill. He doesn't even really know the real me. It's kinda sad."

Kane finally had a breakthrough three years after the onset of the disease when she started going to a different clinic and a different doctor, who looked into her case carefully and put her on antibiotics. She also retested positive for Lyme disease.

Since then, she said she's slowly been able to get out of bed and interact with her family again, though her road to recovery is still long.

"I have hope again. It's been seven years. The first four were really, really hard because I didn't know what the next day held, I didn't know if there would be a next day," she said.

Kane is now on what's known as pulse therapy, which kills the bacteria every four weeks, in accordance with the Lyme disease's life cycle.

When the antibiotics kill the bacteria they release neurotoxin that causes extreme pain - a phenomena known as a Jarisch-Herxheimer reaction.

Though Kane says she still has to overcome this pain every four weeks until all of the bacteria has been killed, in addition to many other lingering symptoms, she takes it in stride.

"It's tough, but I keep very balanced, and positive ... no matter how bad today is tomorrow could always be better. I have a positive attitude and a great support network," she said. "My family has just taken this under their wing, and my husband is my pillar, and I have a nine-year-old son who just brings light into the room."

She also wants to help spread the word about the disease so other people don't have to endure a similar situation.

"Thirty days of antibiotics will kill the disease in almost every human being if it's caught within the first six months. There's no reason for people to get sick like this," she said.

She is part of the Lyme disease awareness network, and especially advocates for better education and more accountability among doctors.

"The major Catch-22 is the CDC says, 'we don't give guidelines to doctors on how to treat,' and doctors say, 'we go by the CDC guidelines.' So the patient is stuck in the middle because the CDC doesn't have enough information from enough research to give definitive protocols ... Right now, the research isn't there for the chronic Lyme," she said.

This lack of knowledge has in large part contributed to the many years she spent without adequate treatment.

"I have had so many doctors tell me, you don't even have a disease. They tell me I'm looking for attention, it's all in my head," she said. "I'm not angry with them, they only know what they know ... and the personality of a person that becomes a doctor - there are very few that are going to say 'I don't know,' and the ones that can are the ones that are finding out about chronic lyme and are trying to help their patients."

However, she said knowledge about the disease has improved drastically since she first became ill in 2003. Now, she's working with the Aspirus network, with Lyme disease specialists and doctors at University of Chicago.

"I have a team of doctors who are willing to accept they don't have all the answers. The fact that that bridge has been crossed is amazing," she said.

She's also taking part in new, cutting edge research at Columbia University in New York.

"There's a lot of stuff out there that's very promising," she said.

Leah Gernetzke can be reached via email at lgernetzke@lakelandtimes.com.

End Quoted Article

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