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Sunday, February 12, 2006

LymeSpot Moving Forward

LymeSpot has moved to LymeDiseaseNews.com. Thank you all for your support over the last year. I have transferred all the old articles from LymeSpot to the new site. LymeDiseaseNews.com will continue to bring you the most relevant and informative news from the battle against Lyme Disease.

Saturday, February 11, 2006

Letter to Eurolyme

EuroLyme is an Internet patient support group, for sufferers of Lyme Disease and associated diseases. It was founded in 2001 and now has over 1000 members.

Dear Lyme activist,

Lately I have seen some patients who appear to have had the diagnosis of Lyme disease given serious consideration by doctors who perhaps would not previously have given Lyme much attention. If so this is good news.

It seems that in the UK in the NHS some consultants are starting to appreciate Lyme disease for what it is: A poly-symptomatic, relapsing, insidiously progressive and highly unpleasant illness which may be quite common and may be present with otherwise normal blood tests and absent physical abnormalities.

In America last year I had the feeling that many Lyme literate doctors felt that we had turned the corner and at last progress was being made. I hope the same is true here. I think it will only be a matter of time before a doctor is found to be negligent for failing to diagnose Lyme and this will really focus doctors' attention on the condition.

There are many potential obstacles: Even if Lyme is diagnosed there is the problem of appropriate treatment and we do not know what constitutes adequate or appropriate treatment but I believe in the future doctors will have to be more prepared to listen to patients who have relapsed.

On this drab February Monday I hope this message gives some comfort to those who are battling to have this condition recognised and taken seriously.

Doctor David Owen

BSc MB BCh LLM

February 6th, 2006

Dr. David Owen has trained at Ilads (International Lyme and Associated Diseases Society). His private practice is based in Cardiff.

Friday, February 10, 2006

The Trouble With Ticks: A Common Source of Illness

Medscape
Laurie E Scudder, MS, PNP


Tick-Borne Illness

The continued emphasis on infectious disease at the ACNP meeting continued with a presentation on management of tick-borne illnesses by Melissa Roberts JD, MSN, FNP, a clinical instructor in the Graduate School of Nursing at the University of Missouri, Kansas City.

Tick-borne diseases are the most common vector-borne illnesses in the United States. The mechanism of transmission of disease through tick bites is not well understood, though it is speculated that pathogens harbored in the gut of ticks may migrate to their salivary glands during a blood meal and are then transmitted to the host via the bite.

Ticks are ubiquitous in the United States, with multiple tick types, all members of the class Arachnida, responsible for 7 distinct clinical diseases. In the northeastern and middle Atlantic states, the deer tick carries the spirochete that causes Lyme disease. The Rocky Mountain wood tick and the American dog tick, found in both the eastern and western United States, spread Rocky Mountain spotted fever. Ticks are also responsible for 5 other less common, though quite distinct, diseases, including ehrlichiosis, tularemia, Colorado tick fever, tick paralysis, and relapsing fever.

As is the case with mosquito-borne illnesses, the mainstay of therapy for tick-borne illnesses is not treatment, but prevention, with a focus on reducing exposure to ticks through avoidance of tick habitats, use of tick repellents and protective clothing, and frequent tick checks, especially following a period of time outdoors in a wooded area.

Lyme Disease

Lyme disease is the most common of the tick-borne diseases in the United States, with almost 24,000 cases reported in 47 states in 2002, an increase of 40% over the incidence in 2001. Twelve states, Connecticut, Delaware, Maine, Maryland, Massachusetts, Minnesota, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island, and Wisconsin, accounted for 95% of cases reported nationally.

Lyme disease, caused by Borrelia burgdorferi, is usually diagnosed and treated according to clinical manifestations, most notably a classic erythema migrans rash that occurs in up to 50% of infected patients. Laboratory testing is useful for patients with confusing presentations, although no single serologic test is definitive.

Lyme disease is stratified into 3 stages: early localized, early disseminated, and late disease. Treatment with doxycycline in patients older than 8 years or amoxicillin in those younger than 8 at the early localized stage is universally effective. Generally, the longer the patient has been ill prior to therapy, the longer the duration of treatment must be, and the need for more aggressive treatment increases. The duration of therapy should be guided by clinical response, rather than by an arbitrary (eg, 30-day) treatment course.

Manitoba sees record number of lyme disease cases

StarPhoenix - Saskatoon,Saskatchewan,Canada
Manitoba health officials are reporting a record five cases of lyme disease in 2005.

Until last year, there had only been two cases on record in the province's history.

Lyme disease is caused by a bacteria that can be carried by a deer tick the size of a sesame seed.

The disease can cause flu-like symptoms and a bulls eye-like rash, and left untreated it can lead to complications of the heart, nervous system or joints.

Experts have suspected there aren't enough deer ticks in Manitoba to breed here.

They think the ticks are coming into the province as hitchhikers on back of American birds from Minnesota and Wisconsin, where the ticks breed.

How could this happen to my family?

Jane Morris tells of her husband’s illness
The Narrowsburg River Reporter

Jane and William “Chris” Morris moved to Narrowsburg several years ago from Titusville, NJ. In what now seems like another life, Chris worked as an executive vice president of a banking investment firm. Six years ago, he was diagnosed with Lyme disease.

“It was central nervous system Lyme disease,” said Jane, and it affected both his brain and his immune system. “He became so sick, he could not put a sentence together. He could not walk down the road.”

Chris began an aggressive treatment of antibiotics, but as a result of the disease, “he lost his job and he lost his health.” The couple began to go through their savings as well. “At that time,” said Jane, “we wondered creatively what we could do together, to rebuild our lives.”

The couple sold their home in New Jersey and purchased what became the Riverlights Bed and Breakfast and Yoga Studio on Route 97.

They spent two years refurbishing the house and creating a yoga studio for Jane, who has over 30 years of training in Kripalu yoga and was a staff yoga therapist at Princeton Medical Center.

Chris began exhibiting erratic behavior two years ago, said Jane.

“Over that time, I noticed a shift in his personality,” she said. “I began to notice a pattern.” Chris would go from being “depressed, losing weight, having very high fevers and staying in bed” to entering a manic phase “when he wouldn’t eat, he wouldn’t sleep, he spent money. And he’d have more energy than I do. One day he can’t rise from bed, and the next, he’s full of energy; all the fevers and illnesses are gone.”

Jane began to seek help for her husband. She received differing opinions as to whether his symptoms could be the lingering effects of Lyme disease. Some doctors said he was exhibiting late-stage Lyme disease syndrome. Others disagreed, saying anyone who had been taking the rigorous antibiotics used to treat Lyme could not possibly still have the bacteria in his body. Chris had taken the antibiotics for five years, said Jane.

The first police encounter

In May of last year, Jane called 911 because Chris had climbed into bed with a loaded shotgun. As a result, he was charged with a misdemeanor and jailed for 10 days. His guns (a pistol and two shotguns) were confiscated. Some time after that incident, he spent 20 days in Bon Secours Hospital in Port Jervis, where he was diagnosed as bi-polar and given medication.

“At that time,” said Jane, “he was also withdrawing from a valium addiction” that was a result of another diagnosis Chris received from a psychiatrist with whom he had been treated for a long time.

“He was diagnosed as having post-traumatic stress disorder,” said Jane. “That doctor prescribed valium for him,” and Chris developed an addiction to prescription drugs.

During this period, Jane continued to seek medical care for her husband. They began seeing doctors in Westchester Medical Center, and went for marital counseling. Concerned with his violent behavior and subsequent incarceration, Jane told the authorities, “My husband is sick. He needs medical care.” She wrote a letter to Family Court stating the same.

But the situation did not improve. “Chris was in denial” about his condition, said Jane. Eventually she took out a restraining order and Chris moved out the house.

In July, he moved back in. Things seemed to be settling down. “Why did I take him back?” said Jane. “He’s my husband. He had been very loving and loyal to me before he got sick. In those days, he was my rock.”

Jane began a new job two weeks ago as a physical education teacher at the Family Foundation School in Hancock. On the home front, she began noticing the signs. “He was late picking me up for work,” said Jane. “He was having seizures, and he would just zone out. He wouldn’t move. He wouldn’t answer me.”

The misdemeanor charges against Chris had been dropped and several days before the stand-off, said Jane, “the township returned his guns.”

Late on Thursday night, she said, “We were having an argument. Looking back, I can see I should not have argued. He was becoming very agitated.” Jane went to bed but later got up and fled the house, and called 911. She spent the night in the police barracks in Narrowsburg while her husband engaged in a 12-hour standoff with police.

Is it possible that Chris has bi-polar disorder or is having a negative reaction to medication?

His diagnosis is uncertain, but “the stress of losing everything, of all we have gone through, has certainly led up to this,” she said.

“We are trying to find out what’s wrong. It has not been an easy journey. We’ve just been plodding along, trying to cope.

“We have been married for 21 years. Most of it has been great. He is my husband, but I can’t go on living like this.

“He’s sick. He needs help. He needs hospital care,” she said.

Timeline to a standoff

2000: William “Chris” Morris was diagnosed with Lyme disease. The family says it has affected his central nervous system, immune system and brain.

2000-2004: Morris is treated with antibiotics, loses his position as an executive vice president of a banking investment firm.

May 2004: Morris and his wife of then 15 years, Jane, move from Titusville, NJ. They renovate and open Riverlights Bed and Breakfast and Yoga Studio on Route 97 in Narrowsburg.

May 5, 2005: Morris surrenders his pistol permit and guns to the Sullivan County Sheriff’s Department, after law enforcement officers were called to the residence for a domestic dispute.

May 11, 2005: Jane finds Morris in bed with a rifle pointing toward him. Jane calls 911 and 911 dispatches a call for an armed, suicidal subject. Sheriff’s Corporal Paul Slavik and Deputy Keith Stephenson talk Morris into surrendering peacefully. Deputies find an antique rifle and a shotgun, both empty, and a loaded 7 mm Savage rifle.

Morris spends 20 days in Bon Secours Hospital in Port Jervis where he is diagnosed as bi-polar and given medication. He struggles with an addiction to Valium and is diagnosed by a psychiatrist with post-traumatic stress disorder.

May 22, 2005: Morris is involved in a single car crash on Route 97, from which he sustained injuries. There is speculation that it may have been a suicide attempt.

July 11, 2005: Sheriff’s department deputies are called to the residence for a domestic dispute, which is resolved, Detective Starner says.

February 2, 2006: According to Jane, the sheriff’s department returns Morris’ permit and firearms.

February 2, 2006: According to Dave Barnes, a Narrowsburg resident and friend of Morris, the couple get into a dispute about the return of Morris’ guns and permit.

February 3, 2006: Jane flees the home around 12:30 a.m. and calls 911. At 1:09 a.m. sheriff deputies respond. The standoff is resolved at 1:45 p.m.

Wednesday, February 08, 2006

Musician Daryl Hall talks about battle with lyme disease

The Star Online

Musician Daryl Hall, who was diagnosed with lyme disease last year, says he felt his body "shut down'' during a concert last summer when the symptoms first hit him.

The 56-year-old Hall, half of pop duo Hall and Oates, said he was in Phoenix at the time.

"I was in the middle of a song and it just felt like a complete core body shutdown,'' Hall said in an interview with "Inside Edition'' that was scheduled to air Wednesday. "It's like somebody just turned the switch. I felt like I was going to faint, throw up, fall down, everything all at once.''

Hall said he had mixed emotions after being diagnosed.

"At first, I had relief because I said, 'OK, now I know that I have something,''' he said. "But then the fear came. The more I read about this, the more I heard about it, the more it scared me.''

Lyme disease, caused by the bite of infected deer ticks, can cause arthritis, neurological problems and encephalitis, a potentially deadly brain inflammation. Early signs include a red rash resembling a dartboard bullseye that slowly spreads and flu-like symptoms.

Hall and Oates are best known for a stream of 1980s hits, including "Kiss on My List,'' "Maneater'' and "I Can't Go for That (No Can Do).''-AP

Tuesday, February 07, 2006

Reported Morgellons cases increase

By ERIN OCHOA / KVUE News

Some call it a mysterious skin disease, others a psychological disorder.

Morgellans is described as a parasite-like disease, that makes patients feel like they have bugs crawling under their skin.

KVUE News first told you about it a year ago. Since then, the number of reported cases has increased dramatically.

Lesions virtually cover Stephanie Bailey's arms and legs, and now, even her chest. She says they produce black -- and colored fibers, and itch uncontrollably.

"It feels like something's crawling on you, but then you look and there's nothing there," she said.

Nurse practitioner, Ginger Savely, studies the skin disease, called Morgellons.

The number of cases she's seen has jumped from just more than a dozen to about a hundred in the past year.

"When you start to hear dozens and dozens of people telling the exact same story and then you start to look and you really pay close attention and start to look at all the things they're talking about and you realize this is very real," Savely said.

Due to a lack of research, government health agencies don't recognize Morgellons as an actual disease. Patients are, instead, diagnosed with psychological disorders.

But over the past year, Savely has made some very unofficial observations which she hopes may help to explain and eventually treat the disease.

"A vast majority of them had some exposure to soil immediately before coming down with the symptoms, so they were either exposed to dirty water, they were gardening, they got a splinter stuck in them," she said.

She says she's noticed - patients with chronic illnesses that suppresses their immune systems, such as Lyme Disease, are more prone to Morgellons.

"It's causing tremendous suffering and something needs to be done about it," Savely said.

That's why the Morgellons Research Foundation was formed about five years ago. Savely says, since then, about 10,000 people have come forward with similar symptoms, but she fears there are still many more cases not yet reported.

"I think the more people that come forward, the more the public health departments are going to realize - hey, this really is a problem," she said.

Fore more information on Morgellons and how you can help research efforts, go to www.morgellons.org .

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