UPDATE

   Carol has been under the weather recently. She's had some surgeries for problems not directly connected to her Lyme Disease issue. At the moment, she is going through a form of physical therapy. She has helpers in her home to assist her with her needs. She might appreciate a phone call, asking her how things are going. So reach her at 208.505.2385.

Thanks!

NOT THE KIND YOU STUDY FOR

Results from a Lyme disease test are exceedingly unreliable. This is due to the fact that during certain stages of the disease, no antibodies can be detected in an infected patient. A Lyme disease test with more accuracy is sorely needed.

Two tests are currently used to detect Lyme infection: the Western Blot analysis, which is used to identify particular antibodies, and the ELISA, a more general antibody test. However, both tests are notoriously inaccurate. Both test for antibodies, which complicates the detection of Lyme bacteria.

"The commercial testing that's available is, in a word, terrible. It has coin toss sensitivity, which means if you flip a coin you get the same results as doing a commercial test," says Dr. Raphael Stricker, former ILADS president, who treats Lyme patients at his clinic in San Francisco.

"And these are the FDA-approved tests that are always being touted by the ISDA. The only reason that FDA approval is needed for those tests is in order to make money off them, to market them commercially. And that's what people don't understand. They think that somehow FDA approval means that the test is better, but it's really not true. The only reason to get FDA approval for a Lyme disease test is if you want to make money off it," says Dr. Stricker.

"In contrast to these really lousy commercial tests, there are some labs that specialize in testing that does much better, that is much more sensitive," Dr. Stricker explains. "Unfortunately, those labs have been bashed by the IDSA as being inaccurate. And that's another problem that we have with making the diagnosis, because if you have someone who is chronically ill and you do a Lyme disease test that misses half the cases, chances are, you're not going to make a diagnoses and the person is not going to get treated."

Patients can take a Lyme disease test one week and get a positive result, and take the same test two weeks later and result in a negative. The confusion is due to the nature of the Lyme bacteria, which is highly adaptive and bent on survival within a threatening environment.

LYME AWAY

    

   Lyme disease is caused by bacteria called Borrelia burgdorferi ( B. burgdorferi). Blacklegged ticks carry these bacteria. The ticks pick up the bacteria when they bite mice or deer that are infected with Lyme disease. You can get the disease if you are bitten by an infected tick.   Lyme disease was first reported in the United States in the town of Old Lyme, Connecticut, in 1975. In the United States, most Lyme disease infections occur in the following areas:
Northeastern states, from Virginia to Maine
North-central states, mostly in Wisconsin and Minnesota, the West Coast, particularly northern California.    There are 3 stages of Lyme disease. 

• Stage 1 is called early localized Lyme disease. The infection is not yet widespread throughout the body.
• Stage 2 is called early disseminated Lyme disease. The bacteria have begun to spread throughout the body.
• Stage 3 is called late disseminated Lyme disease. The bacteria have spread throughout the body.

Risk factors for Lyme disease include:

• Doing outside activities that increase tick exposure (for example, gardening, hunting, or hiking) in an area where Lyme disease is known to occur
• Having a pet that may carry ticks home
• Walking in high grasses

    Important facts about tick bites and Lyme disease:

• In most cases, a tick must be attached to your body for 24 - 36 hours to spread the bacteria to your blood.
• Blacklegged ticks can be so small that they are almost impossible to see. Many people with Lyme disease never even saw a tick on their body.
• Most people who are bitten by a tick do not get Lyme disease.

Symptoms of early localized Lyme disease (Stage 1) begin days or weeks after infection. They are similar to the flu and may include:

• Body-wide itching
• Chills
• Fever
• General ill-feeling
• Headache
• Light-headedness or fainting
• Muscle pain
• Stiff neck

    There may be a "bull's eye" rash, a flat or slightly raised red spot at the site of the tick bite. Often there is a clear area in the center. It can be quite large and expanding in size.    Symptoms may come and go. Untreated, Lyme disease can spread to the brain, heart, and joints.

    Symptoms of early disseminated Lyme disease (Stage 2) may occur weeks to months after the initial tick bite. They may include:

• Paralysis or weakness in the muscles of the face
• Muscle pain and pain or swelling in the knees and other large joints
• Heart problems, such as skipped heartbeats (palpitations)

    Symptoms of late disseminated Lyme disease (Stage 3) can occur months or years after the initial infection. The most common symptoms are muscle and joint pain. Other symptoms may include:

• Abnormal muscle movement
• Muscle weakness
• Numbness and tingling
• Speech problems

    A blood test can be done to check for antibodies to the bacteria that cause Lyme disease. The most commonly used is the ELISA for Lyme disease test. A western blot test is done to confirm ELISA results.   In areas where Lyme disease is more common, your health care provider may be able to diagnose early disseminated Lyme disease (Stage 1) without doing any lab tests.
    Other tests that may be done, when the infection has become more widespread, include:

• Electrocardiogram
• Echocardiogram to look at the heart
• Spinal tap (lumbar puncture to examine spinal fluid
• MRI of the brain

    Anyone who has been bitten by a tick should be watched closely for at least 30 days.    A single dose of antibiotics may be offered to someone soon after being bitten by a tick, if all of the following are true:

• The person has a tick that can carry Lyme disease attached to their body. This usually means that a nurse or physician has looked at and identified the tick.
• The tick is thought to have been attached to the person for at least 36 hours.
• The person can begin taking the antibiotics within 72 hours of removing the tick.
• The person is over 8 years old and is not pregnant or breastfeeding.

   A 2 - 4-week course of antibiotics is used to treat people who are diagnosed with Lyme disease. The specific antibiotic used depends on the stage of the disease and the symptoms.    Pain medications, such as ibuprofen, are sometimes prescribed to relieve joint stiffness.

CAROL'S STORY

    Hi, Everybody, I’m Carol and have been dealing with Lyme’s Disease and its varying side affects for 17 years. Testing has been improved tremendously since then, so don’t equate your life totally with mine. I’m writing so you don’t make my mistakes and maybe I can help you in some way. Good luck in you journey. p.s. buy a lot of sticky notes.    I still can remember that first day in 1997, that I knew I was really sick. I just couldn’t get out of bed, this was not me! I was a Type A personality all the way. In 1995, I had purchased a brand new house in Oct, had a 50th Anniversary party for my parents in Nov and got engaged in early Dec. and went skiing for Xmas week out west, to round out the year.
    In 1996, I moved my parents (who lived in the same house for sixty years), planned my wedding, practically alone (since my sister and sister-in-laws lived out of town). Also, I acquired a Mother-in-Law from Hell. I was so confused….I had a new first and new last name. My Mother-in-Law called me “that Woman” because I stole her only son and I had taken on my Husband’s last name. Had two wedding showers and one wedding that people said was most the fun they ever had at a wedding. Went on a TWO week Caribbean cruise to eight islands and came back tired. Usually, I came back from vacations, full of vim and vigor. This time I noticed my concentration was going, especially at work. I gave a short speech at my wedding thanking my guests for coming to our celebration, when my husband and I would be leaving and where the cruise would be going. My old boss stood up at the wedding and said “She’s been already gone for months”. He was a great boss.
    Also, I went from a size 6 or 8 to a size 10, and my boss asked me if this was my “after honeymoon size”? (Even my shoes were getting too small). I remarried at 42 yrs. I first married at 26 yrs old, to a mentally and physically abusive man that lasted less than a year. Now, I was very sick, not even married one year to a wonderful guy and 45 years old. I was very skinny all my life and suddenly at 45 people usually don’t DOUBLE their weight.
    You know the story now…..go to your internist…he tests your thyroid…nothing is wrong….go to another doctor…..nothing is wrong…. go to a shrink….it all in your head. Hurray!!! At least, that can be fixed, right? No, it wasn’t all in my head, but keep him/her around for when you get depressed from this monstrous disease.
    Around 1990, I was diagnosed for FM (Fibromyalgia) which I call arthritis of the muscles. I took Lyrica and other pain pills that I can’t remember. Finally, after reading the internet, I went to a CFS (Chronic Fatigue Syndrome) doctor, he was an infectious disease doctor, Dr. L for a year. I trusted him with my life, what a stupid mistake. He prescribed me EIGHT huge pills used for Herpes and told me to sleep as much as I could. Crazy? I lost all my muscles strength and this doctor was in the book of “who’s who”! Before that I used work out at a gym, three times a week. Whatever you do, DON’T stop exercising, even if it’s only walking five minutes a day. You will be thankful later.
    Finally, it was my Pharmacist that saved me and asked if I had been tested for “Lyme’s Disease”? I hadn’t even heard of Lyme’s Disease. He referred me to a doctor that a few of the neighborhood people went to and this doctor did tests. My lyme test was out of the ball park, and my new doctor had already reported me to the CDC.
    He started me immediately on an iv, since I had Lyme’s so long and untreated for so long. I went back one more time to Dr. Who’s Who’s and I expected an apology at least and he just said, “you don’t need two infectious disease doctors”. Fuck him.
    My new infectious disease doctor, Dr. M., who I still see, is a super, super intelligent doctor and is the Captain of my ship. Back 17 yrs ago, there were only two good infectious disease doctors in Michigan.
    So, my iv was usually inserted somewhere near my elbow and I cut off the toes of a sock and put it over the PICC line to keep it clean and not snag it on something and pull it out.
    The answer is NO, I did not have a bull’s ring and I only ever met ONE person that had it. I didn’t have a rash or any flu-like symptoms. Also, get used to people telling you that you look so good and don’t look sick, or maybe a little tired. Inside I felt like a truck ran over me, the endless pain, the tiredness, the mental fog, lack of concentration, I felt 90 yrs. old. So where did I get it? Who know? I went to Connecticut for a weekend and went hiking once when I was engaged. Also, my beautiful new house was across from a nature area, where deer lived and people hiked and went snow-mobiling. I found one on my mums and put it in an empty pill bottle and gave it to my new Dr. M. and put some grass, as food, in the bottle. He sent it off for testing and sure enough it was a tick (Wow I can identify them now) and it was INFECTED! He said at least kill them next time! I didn’t know?

-------new day ---------

    Well, before LD, I very out-going and liked to be the center of attention. (I admit it at least). My pulse beat was always high and my PICC lines kept coming out, so I gained the title of the “The PICC Queen”. Gradually, I went on and received a “Groshong Catheter” surgically into the main artery of my heart. I think I only went through three of them. Remember, I had LD for yrs untreated and undiagnosed and needed years of liquid antibiotics to treat me. Sometimes, my doctor used a combo of antibiotics. Getting a Groshong, I was under anesthetics and I woke up feeling someone punched my chest very hard, a dozen times. The pain was gone in less than a week. Personally, I like the Groshong much better than a PICC line. It was easier all around. Like taking a shower and trying to cover your PICC line in your arm. Covering and keeping your Groshong dry is much easier.    Next, I would recommend getting an excellent pain doctor. My infectious disease Dr. M. would go up to a Tylenol #3, but that wasn’t cutting my severe pain. Word of mouth, helped find me my first pain doctor, but I always waited three hours to see him. After a year or two of this I switched, by word of mouth again, an excellent pain specialist, who was also an anesthesiologist.

LYME DISEASE: THE TEST

The Test
How is it used?
When is it ordered?
What does the test result mean?
Is there anything else I should know?

How is it used?
   Lyme disease tests are used to determine if a person with characteristic symptoms has been infected by Borrelia burgdorferi. If the doctor suspects a recent infection, then she may order both an IgM and IgG antibody blood test. If they are negative but symptoms persist, then the tests may be ordered again a few weeks later.
    Acute and convalescent samples may be used to track progression of the disease by looking for changes in the amount of antibody present. If the tests are positive, then a Western blot test is ordered to confirm the findings.
   Lyme disease can sometimes be challenging to diagnose. If a person has removed a tick from his skin, had a known tick bite, and lives in or has visited an area of the country where Lyme disease is most prevalent, then the timing of the potential infection can be closely estimated. However, the tick is about the size of the head of a pin and the bite may not be noticed. Not everyone will develop the characteristic rash, and the symptoms that a person does have may be nonspecific and flu-like in the early stages, with joint pain that develops into chronic arthritis and/or with neurological symptoms that appear months later.
    A blood test for antibodies to the bacterium is the preferred test for the diagnosis of Lyme disease. However, if a person has central nervous system symptoms, such as meningitis, then IgM, IgG, and Western blot testing may sometimes be performed on CSF.
    Occasionally PCR (polymerase chain reaction) testing is performed on a sample because it is a more sensitive way of detecting an infection with B. burgdorferi. This method is useful in detecting the infection in samples such as fluid collected from a joint. It looks for the genetic material (DNA) of B. burgdorferi in the joint fluid (synovial fluid).
   Very rarely, a sample, such as a skin biopsy, may be cultured to grow the bacterium.

NOT YOUR TYPICAL

Stephen Gleasner is not your typical stay-at-home dad.

click image to enlarge

Stephen Gleasner of Appleton is recovering from Lyme disease after it went undiagnosed for several years.

Gabe Souza/Staff Photographer

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ATTEND A SEMINAR

TICK AND LYME disease awareness seminars will be held by the Maine Center for Disease Control in partnership with outdoor retailers.

• Epic Sports Gear, Bangor, May 4

• L.L. Bean, Freeport, May 19 and 20

• Cabela’s, Scarborough, May 26

ANYONE INTERESTED in holding a seminar can call the Maine CDC at 1-800-821-5821.

Gleasner, 50, creates art from plywood. His glass-like wooden bowls and relief wall hangings appear in galleries in Rockport and Rockland, as well as in South Carolina, Connecticut and Minnesota.

When not wielding a sander or hand saw, he has enjoyed riding his mountain bike long distances – such as from Canada to Mexico.

But now, Gleasner, of Appleton, suffers the classic symptoms of Lyme disease – chronic fatigue, and joint and gut pain. Gone are the mountain-bike expeditions and long creative days in his studio. Now it is a challenge making it from morning alarm clock to bedtime without a nap.

"I used to think it was fun to ride my bike and then cut the grass. But the past three years, if I took a two-mile walk, I had to sleep for a couple of hours. Everyday life became one special occasion after another. I had to give everything an extra effort," Gleasner said.

In 2008, Gleasner entered the Tour Divide, a mountain bike race few dare to try, pedaling through two Canadian provinces and five states from Montana to New Mexico. He raced against half a dozen other riders, climbing a total of 200,000 vertical feet over the 2,745-mile route during the course of a month.

Then Gleasner returned to Maine, took a few victory laps at the annual Bradbury Mountain bike race, and his life soon changed for the worse.

"Three months after the Divide, things started to fall apart. I went to an infectious disease guy, and the test for Lyme came back negative. I was assured it wasn't Lyme. But it's more complicated than that. It's a hard disease to diagnose," he said.

Gleasner struggled to make his wife and two young children breakfast. He was often forgetful, confused and suffered vertigo.

He would enjoy his son, Clark's, hour-long hockey practices, then struggle to put the boy's equipment in the hockey bag for him.

Over the next three years, Gleasner had an MRI, two CAT scans, blood work repeatedly, and changed doctors several times. All the while, his symptoms got worse.

Then last fall, he switched physicians one last time, and despite having never tested positive for Lyme, he started receiving treatment for the disease.

Since then, Gleasner says he's gotten better. He can make it through most days without a nap; gets less confused and dizzy; and is even trying to ride his bike again. He believes he will continue to recover. But he'll never get the last three years back.

"When I rode the Divide, my daughter was 3. More than half her life she's known me as the guy who is stiff and hurts. I'm not the guy I was, but I can't tell that to my kids. They see what they see now," he said.

AMERICAN LYME DISEASE FOUNDATION

    The American Lyme Disease Foundation, Inc. is dedicated to the prevention, diagnosis and treatment of Lyme disease and other tick-borne infections.
    The Foundation plays a key role in providing reliable and scientifically accurate information to the public, medical community and government agencies about tick-borne diseases and their effects on human health and quality of life.
    The Foundation works to help people make wise healthcare decisions by providing key information on Lyme disease and other tick-borne infections to the public and medical community. Particular emphasis is placed on the importance of prevention and early intervention in avoiding complicated, expensive and potentially debilitating long-term illness.
    To achieve its mission, the ALDF provides an array of brochures, tick ID cards and other materials that contain current information on symptoms, diagnosis and treatment guidelines, prevention strategies, and methods of tick-control. Individuals, schools, physicians' offices, health departments, corporations, and many other organizations may order bulk quantities of these materials for a modest fee. A Spanish language brochure is also available. It should be noted that all of these materials may be downloaded and printed directly from our website.
    Access to knowledgeable primary care physicians and specialists throughout the country is critical to patients whose regular doctor may not be familiar with tick-borne disease diagnostic and treatment guidelines. The foundation maintains a national physician referral service that includes board-certified specialists who have been contacted by the ALDF and have agreed to evaluate and treat Lyme disease patients. Leading Lyme disease researchers serving as medical advisors to the ALDF may also be available for medical consultations with physicians in non-endemic areas who may not be familiar with Lyme disease diagnosis and treatment. The ALDF Physician Referral Service may be contacted directly at physref@aldf.com.
    Hispanic Education Program The main objective of this program is to educate members of the Hispanic community in the tri-state area about Lyme disease and other tick-borne infections. Many in this primarily immigrant group work outdoors and face the threat of tick-bites on a daily basis. As such, the ALDF has developed a multi-faceted educational program designed to increase awareness of tick-borne diseases.
    Strategies include dissemination of our Spanish language brochure, "Understanding Lyme Disease." In color, the brochure has a pictorial focus and is designed to inform its readers in simple terms about tick-borne infections, proper tick removal, and the need to see a physician if symptoms occur. This informative brochure is ideal for use by health departments, employers, clinics and other organizations concerned about the health of the many individuals of this population who work outdoors on a daily basis. Sample copies are available free of charge and also may be downloaded and printed directly from our website.
    Lyme disease (LD) is an infection caused by Borrelia burgdorferi, a type of bacterium called a spirochete (pronounced spy-ro-keet) that is carried by deer ticks. An infected tick can transmit the spirochete to the humans and animals it bites. Untreated, the bacterium travels through the bloodstream, establishes itself in various body tissues, and can cause a number of symptoms, some of which are severe.
    LD manifests itself as a multisystem inflammatory disease that affects the skin in its early, localized stage, and spreads to the joints, nervous system and, to a lesser extent, other organ systems in its later,
disseminated stages. If diagnosed and treated early with antibiotics, LD is almost always readily cured. Generally, LD in its later stages can also be treated effectively, but because the rate of disease progression and individual response to treatment varies from one patient to the next, some patients may have symptoms that linger for months or even years following treatment. In rare instances, LD causes permanent damage.
    Although LD is now the most common arthropod-borne illness in the U.S. (more than 150,000 cases have been reported to the Centers for Disease Control and Prevention [CDC] since 1982), its diagnosis and treatment can be challenging for clinicians due to its diverse manifestations and the limitations of currently available serological (blood) tests.
    The prevalence of LD in the northeast and upper mid-west is due to the presence of large numbers of the deer tick's preferred hosts - white-footed mice and deer - and their proximity to humans. White-footed mice serve as the principal "reservoirs of infection" on which many larval and nymphal (juvenile) ticks feed and become infected with the LD spirochete. An infected tick can then transmit infection the next time it feeds on another host (e.g., an unsuspecting human).