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A Classic Case of Lyme disease

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What a great weekend for good articles concerning Lyme disease. This is a story that is familiar with many who are battling this disease. This one one comes from California. Pamela O'Kane knows what it is like to have Lyme disease. Enjoy this story of courage and perserverence.

Be well,

Richard




(Begin Article)

Triumph of her will
smcmanis@sacbee.com
Published Sunday, Aug. 09, 2009


She wouldn't use the wheelchair. Anything but that. The bulky walker was bad enough, but at least she could retain a semblance of her former mobility.

Yeah, Pamela O'Kane was determined – stubbornly so – to get back to normal life after another stay at the hospital. This one lasted 10 days in the late summer of 2007, and doctors still had no definitive diagnosis to explain and treat the uncontrolled, episodic spasms in her legs and arms, the partial facial paralysis, the weakening of her reflexes and the troubling 35-pound weight loss.

O'Kane, a 48-year-old instructor at California State University, Sacramento, suspected that she had somehow contracted Lyme disease – a potentially debilitating infection transmitted by ticks – at some point in 2006. All the symptoms were there, and her Lyme disease specialist detected two co-infections that usually accompany the disease. But three times the test for Lyme disease came back negative.

Which frustrated O'Kane to no end. Here was this perfectly healthy woman – a national-qualifying age-group triathlete, no less – rendered nearly an invalid who could barely stand up to conduct her teacher education classes without succumbing to fatigue, breathing problems and spasms.

Specialists had tested her for a medical dictionary's worth of maladies. The spinal tap for Lou Gehrig's disease came back negative, as did the scan for multiple sclerosis. She saw her gynecologist for a cervical cancer test, a pulmonary specialist for a lung cancer screening, neurologists for all types of central nervous system disorders.

Negative, negative, negative.

One doctor even suggested anti-depressants, thinking O'Kane was suffering from psychological problems. O'Kane, however, knew the problem was in her central nervous system, not "all in my head."

Still, just before this latest hospital discharge, the neurologist at the hospital told O'Kane's mother, Virginia Wilbur, and her older sister Denise Wilbur DeTrano that O'Kane's condition would only worsen, and a wheelchair was advisable.

"They told me I was going to be disabled," O'Kane recalls. "They said it would get progressively worse."

O'Kane had other ideas. During the hospital stay, she had read a story in The Bee about women climbing Half Dome, that 2,000-foot-high granite monolith in Yosemite, and she vowed to do it herself within a year.

"Pamela, you can't even walk across the hallway," Denise told her. "What makes you think you can climb Half Dome?"

"I will," O'Kane said tersely.

A year later, she and Denise had reached the goal, arms raised atop the granite slab. Just for good measure, the pair ascended Half Dome again this summer.

But O'Kane says it took more than dedication and grit to get her body back close to pre-illness shape.

Rather, she had to put aside her skepticism and commit fully to a controversial Lyme disease treatment plan that she had hesitated to enter because she technically had never been diagnosed.

It involved long-term antibiotic treatment – open-ended, depending on her response to it – through an IV line implanted in her left arm. This goes against standard treatment recommended by three medical organizations: the Infectious Disease Society of America, the Centers for Disease Control and Prevention, and the American Academy of Neurology.

In a 2007 study published in the journal Neurology, researchers found that for patients with neuroborreliosis (Lyme disease that affects the nervous system), the treatment was effective only during a 14- to 28-day window. Long-term use of antibiotics has been linked to side effects such as blood clots, bloodstream infections and diarrhea.

Yet many Lyme patients (and those, like O'Kane, who exhibited symptoms but were not officially diagnosed) report that a six- to eight-month regimen of antibiotics helped them. And San Francisco physician Raphael Stricker, who has treated 1,800 Lyme disease patients, says he's seen patients cured by long-term antibiotic use.

"For patients with persistent symptoms based on persistent infection, unless they're treated long-term with antibiotics, they aren't going to get better," says Stricker, who did not treat O'Kane. "There is a lot of evidence from animal and human studies that there is persistence in infection (with Lyme), and the only way to get rid of it is long-term antibiotics."

O'Kane knew that prolonged use of antibiotics could be harmful, but she also knew that it was effective.

She underwent six months of treatment from January to July 2007. While taking the drug, she still had hand and facial tremors and had yet to gain back weight, but the severity was greatly diminished, and O'Kane could go about teaching and participating in triathlons.

What gnawed at her, though, was the fact that she'd never been diagnosed with Lyme. All those negative tests couldn't be wrong, could they?

That summer, she says, "I decided to take myself off it and detox. I wanted to try this on my own. Everyone told me, no, no, no. But I said, 'This is it.' "

About two weeks off the medication, she called her sister.

"She said that her feet were turning in – foot drop like people with cerebral palsy have," DeTrano recalls. "Fifteen minutes later, she calls me and says, 'I can't walk.' I had to go and carry her into the ER."

After that prolonged hospital stay, the one in which neurologists said she might be permanently disabled, O'Kane was eager to go back on antibiotics. She recalls being in the Lyme specialist's office, and her feet were spastically moving so much "it was like I was tap-dancing on the floor."

Even with just the initial dose of antibiotics coursing through her system, O'Kane said she felt better. She tossed aside the walker and never used it again. Not long thereafter, she was running, swimming and biking.

She regained her strength and stamina, if not all the weight she lost. Still, through rehab with a personal trainer that includes weight training, O'Kane has 12 pounds of muscle mass, according to her latest hydrostatic weight test.

Ironically, after feeling better, O'Kane finally tested positive for Lyme in January 2008.

"She's a classic case," Stricker says. "The commercial testing for Lyme is, in a word, terrible. They miss more than half the cases. Compare that to the sensitivity of AIDS testing, which is 99.5 percent (accurate). The tendency is for doctors to say, 'I guess you don't have Lyme disease. It must be something else.' "

O'Kane just seems happy to have finally cleared the major health hurdle. Now back to running seven-minute miles and churning on the bike, O'Kane believes exercise has hastened her recovery. But she admits that she still has problems, episodic tremors mostly.

"It's like somebody who suffers a stroke and recovers, but only to a certain point," she says.

She's learned to deal with the new normal.

"I seem to have a high sensitivity for odors," she says, explaining her current state of health. "If somebody's mowing their lawn, I'll start to moan.

"It's strange, I know. And changes in temperature, going from really hot to really cold will set off facial tics and moaning.

"When I first started getting back to triathlon, getting in the water, I'd start to tremor. Every morning, just putting my hands under the water to wash blueberries, it'll set off the shakes. It's embarrassing, but I've learned to cope."


MORE INFO

According to the Centers for Disease Control and Prevention, California's Lyme disease cases amounted in 2007 to only 0.2 per 100,000 residents. The disease is most prevalent on the East Coast but has been detected in 56 of California's 58 counties.

• What causes Lyme disease: It is transmitted by infected ticks carrying the bacterium spirochete. The ticks attach to human skin and feed on the blood supply.

• Early symptoms: Mild flu-like symptoms, usually accompanied by a red, expanding skin rash. Turns into chills, fever, headaches, swollen lymph nodes, muscle and joint pain, fatigue and heart irregularities. The rash can appear up to 30 days after the bite. Some patients report never finding a rash.

• Long-term symptoms: Arthritis and central nervous system disruption that can result in tremors and spasms, chronic fatigue, facial paralysis, numbness and tingling in the limbs, inability to concentrate.

• How to avoid Lyme disease: Stay in the middle of trails, avoiding grassy areas and contact with logs, tree trunks and fallen branches in forests. Tuck your pants into boots or socks and your shirt into pants. Use a repellent, such as DEET, made to combat ticks. Check yourself thoroughly immediately after hiking and up to three days afterward.

• How to remove ticks: Using tweezers, grasp the tick's mouthparts as close to the skin as possible and gently pull the tick straight out. Wash your hands and the bite site with soap and water. Apply antiseptic to the site.

Source: California Department of Public Health, Division of Communicable Disease Control

(End Article)

Thanks to the Sacramento Bee Newspaper for this article!

It's Those Deer Ticks Again!!

Hi friends,
I found this article in the Centre View-Southern Edition Newspaper in Centreville, Va. As always I have included the full text so you can see how this community is dealing with ticks and Lyme disease. More and more communities have become involved in teaching and training their citizens about taking precautions when it comes to tick bites. The author Reed S. Albers does a great job in telling the story. I hope you will find it informative and enjoyable to read as I did.

Be well,
Richard




(Begin Article)

Victims Share Stories on Lyme Disease Effects
Panel of experts recommends precautions.

By Reed S. Albers
Friday, August 07, 2009

Mosquito and tick bites are common nuisances for those who enjoy outdoor activities in the summer, but as Manassas resident Becky Pannenton, 52, learned earlier this year, those annoying bug bites can lead to severe health problems.

"I just found out on March 6 this year that I had [Lyme disease]," she said. "I’ve had it for more than 18 years without even knowing. "

Pannenton and other Lyme disease sufferers listened as elected officials, county scientists and representatives of Lyme disease advocacy groups held a town hall meeting on July 22 in the Centreville High School auditorium to educate citizens about the disease.

LYME DISEASE historically hasn’t been a major issue for the Fairfax County area and is most commonly experienced in the northeastern United States. With approximately 400 new cases reported in Fairfax County last two years, panelists agreed it is time to take preventative action.

"One of the steps I’ve taken to raising awareness is scheduling multiple meetings about this issue," said Supervisor Pat Herrity (R-Springfield). "There’s been a doubling of Lyme disease cases in the county. My wife [was bitten by a tick] but we treated it. Not everyone is as lucky."

Another panelist, Fairfax County Health Department Supervisor Jorge Arias, who has a doctorate in entomology, said that in 2008, 13.56 percent of black-legged ticks in the county tested positive for the bacterium that produces Lyme disease compared with 4.48 percent in 2007.

The bacterium that causes Lyme disease, Borrelia burgdorferi, is carried by black- legged ticks, also known as deer ticks, and transferred to humans through a bite contracted while outdoors.

"[Ticks] wait in the grass for someone to pass by and then crawl up their legs," Arias said. "They don’t jump and it’s hard to tell they are on you. They’re very sneaky."

Early symptoms of Lyme disease include headaches, flu-like symptoms and nausea, but in later stages severe psychological, neurological and sensory ailments can develop such as depression, blurred vision and memory loss.

Deer are the most common culprit for bringing ticks into the neighborhood, Arias said. "There are deer everywhere in this area, deer are the ‘Metro’ system for ticks," he said.

Besides offering Lyme disease information, panelists also discussed preventative measures. Vicki Monroe, Fairfax County wildlife biologist, offered tips for combating ticks.

"Keep your grass short and free of leaf litter, and keep playground equipment away from the yard’s edge and trees," she said. "Always wear insect repellent, dress in long clothing when traveling through the woods and stick to the main trails."

Another preventative measure is to check your body daily for ticks. "Whenever you go out, check your body for ticks," Arias said. "You’re either looking for a new freckle, or a new one with legs."

If there is a tick on one’s body, remove by gently pulling it out with tweezers. "There’s old wives tales about using lighters, cigarettes and alcohol [to remove ticks]," Arias said. "They aren’t true. Just use the tweezers."

The local health department or veterinarian can test the tick for Lyme disease for free, panelists said.

EVEN ONE’S FOUR-LEGGED friends are at risk, panelists said. Pets should be equipped with flea collars and have their fur checked regularly for ticks.

For those who do contract Lyme disease, the experience can be painful and frustrating. Lyme disease is a controversial topic as some physicians do not believe that it is the cause of extreme symptoms.

"No other disease has ever caused such a divide in the medical community," said panelist Debbie McCabe, director of pediatric and family wellness at the National Integrated Health Associates in Washington, D.C. "It is the great imitator and can cause multiple symptoms that baffle physicians."

Even the circular bite mark that is left behind by a tick can be misleading. "Some think they have ringworm, but it turns out to be Lyme," McCabe said.

Adding to the confusion is that Lyme disease screening is not accurate. The most common test, the enzyme-linked immunoassay test (ELISA), misses 35 percent of cases in the screening process, McCabe said.

For some, the effects of misdiagnosis can lead to years of unnecessary suffering.

"In the early ‘80s no one knew about [Lyme disease]," said Pannenton, whose 18-year misdiagnosis led to severe medical problems. "It started out with flu-like symptoms and then fatigue, then the headaches and dizziness came in," she said. "I suggested I had Lyme disease to my rheumatologist but he wouldn’t discuss it with me."

Loudoun County resident Sharon Payne, 43, has suffered from chronic Lyme disease since 2005, and has found few treatments that help with her chronic body aches.

"In 2005, I was on an antibiotic treatment [for Lyme disease] that made me lose 35 pounds," she said. "I decided that wasn’t the best treatment for me. I now use cold laser therapy. It’s the same treatment that was used to treat [cyclist] Lance Armstrong [for cancer]."

Lyme disease can be treated, but there isn’t a universal treatment method for those who did not detect the disease in its early stages, McCabe said.

VARIOUS OUTREACH groups also are available for those dealing with chronic Lyme disease.

Panelist Monte Skall, executive director of the National Capital Lyme and Tick-Borne Disease Association in McLean (www.natcapLyme.org), shared Information for those seeking help.

"I’ve had Lyme for 18 years and it gets harder and harder to deal with," she said. "I started this group because there was nothing out there for people with this infection. We now how five chapters in Virginia."

Support for those infected with Lyme disease isn’t just coming from advocacy groups but also on Capitol Hill.

Dan Scandling, chief of staff for U.S. Rep. Frank Wolf (R-10), delivered some hopeful news that lobbying efforts are paying off.

"A $6 million increase for the Centers for Disease Control budget will increase Lyme disease research," he said.

What To Do If Bitten?
Step 1: Don't panic.
Step 2: Gently pull the tick straight out by grabbing the tick as close to the skin as possible with tweezers.
Step 3: Place the tick in a bottle or bag labeled with the patient's name, address and date the tick was removed.
Step 4: Have the tick identified and tested by a lab, health department or veterinarian.
Step 5: Seek immediate treatment if tick tests positive for Lyme disease.
Sources: The National Capital Lyme and Tick-Borne Disease Association, Fairfax County Health Department
(End Article)

©2009 Connection Newspapers. All Rights Reserved. Privacy Policy
1606 King Street ♦ Alexandria, VA 22314 ♦ 703-821-5050

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Lyme "rage", is it real?

Hello friends,

Lyme rage has been a topic much discussed in the media the last few months. For those of us who have Lyme disease I think we can understand how Lyme disease has affected our personality at times. Some of us are more affected than others. However, Lyme "rage" can be a real symptom and all should know about it. This article from ABC News is a good glimpse into the problem. I hope you learn from it.

Be well,

Richard





'Lyme Rage': Can Lyme Disease Affect Your Personality?
Roaming Ticks Can Carry Disease Linked to Physical Problems, Mental Madness
By ELISABETH LEAMY, JOSH GAYNOR and LEE FERRAN

July 30, 2009 —

They're tiny insects that can cause big problems. A rise in the number of ticks this year has infectious disease experts focused on the best way to treat the Lyme disease that the little buggers can spread.

Some 20,000 Americans are infected and treated every year, but countless others go undiagnosed. The illness has symptoms that include fever, fatigue and headaches, but if left untreated, Lyme disease can be more serious.

While there are physical symptoms of the disease that can include severe headaches, severe joint pain and even numbness in the hands or feet, many experts believe Lyme disease can rewire the human brain and affect personality.

"I'm convinced that Lyme in a chronic form can affect psychiatric issues, neurological issues and you can have neurological problems," New York epidemiologist Dr. Daniel Cameron said.

The Center for Disease Control and Prevention notes that up to 5 percent of patients "may develop chronic neurological complaints months to years after infection."

Lyme disease patient Kelly Kulesz told "Good Morning America" she saw herself change overnight because of her infection.

"They put me on stage fright medications," Kulesz said. "Doctors thought it was obsessive compulsive disorder, but it's just not."

When Terry Jo Sedlacek went to trial for allegedly gunning down the Rev. Fred Winters in March, the defense cited his Lyme disease infection and it's contribution to what many call "lyme rage."

But not all experts believe Lyme disease causes such " target="_blank">radical changes in personality.

"The example I like to cite is if I have Lyme disease and I get run over by a truck, the Lyme disease didn't cause my broken leg," Halperin, said Dr. John Halperin, lead author on the new American Academy of Neurology Guideline on Lyme Disease Treatment.

ABC News medical contributor Dr. Marie Savard, who had lyme disease, said that the possibility of personality changes should at least be taken into consideration.

"It does affect the central nervous system. You can have behavior changes, personality changes," she said. "We have to listen and pay attention."

More Information on Lyme Disease

For more information on how to prevent, diagnose and treat Lyme disease, vist the Web sites below.

American Academy of Neurology for Lyme Disease Treatment

Centers for Disease Control and Prevention

Infectious Diseases Society of America

National Institute of Health

National Institute of Health

www.LymeDiseaseAssociation.org

Lyme Disease Foundation: www.lyme.org



Copyright © 2009 ABC News Internet Ventures

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