'I wanted to talk about dying'
Osseo-Maple Grove Press
Last February, Maple Grove resident Sue Nelson felt she had hit rock bottom.
She was in constant pain that worsened daily and had been to every doctor and specialist she thought was possible, incurring above $300,000 in medical expenses.
"I laid in bed thinking 'this is it'. I couldn't do anything. I couldn't walk, sleep or function in daily life. There were no more doctors. No more tests. I wanted to talk about dying. I thought that is where the pain would lead me," Nelson said.
After all the doctors and multitude of tests, Nelson was left with no diagnosis and a life of consent pain.
"I wanted to talk about dying. I wanted to make peace with myself and make preparations. My mom was the first one willing to talk about my wishes and it was like admitting I was going to die," said Nelson. "I prayed I would die quickly or receive an answer as to why I was so sick. During our conversation, out of the blue, my mom mentioned Lyme disease."
Little would Nelson realize, the conversation about the possible end of her life would lead her to the discovery that would allow her to live her life again.
Nelson was diagnosed with Lyme and Bartonella disease in March 2005. The diagnosis and treatment, she explained with a smile, is letting her live her life again.
Although Nelson cannot determine the date she contracted the diseases, she started developing symptoms in August 2004. She did not experience the classic "bulls eye rash" associated with Lyme disease, which may have led to an earlier diagnosis. Symptoms began in the form of the feeling of pins and needles in her feet. "It was unusual, but nothing other than a minor annoyance," said Nelson. "I knew something was wrong, but it wasn't anything I felt I should see a doctor about."
In November 2004, existing symptoms had worsened, spreading through her body and additional symptoms appeared. Nelson decided it was time to visit a doctor when she could no longer sleep at night due to a resting heartbeat of 90-120 beats per minute. According to the American Heart Association, the average individual has a resting heart rate of 60 to 80 beats per minute. She was placed on high blood pressure medication, but symptoms continued to worsen and new symptoms continued to appear.
"I started having a consent buzzing feeling in my body," explained Nelson. "Eventually, I had fainting episodes, mini seizures and convulsions."
In addition to a general practitioner, Nelson visited a stream of specialists ranging from cardiologists to infectious disease specialists and had a multitude of tests performed. Nelson indicated that a test was completed for Lyme disease, but it had provided a false negative.
During one of her many clinic visits, Nelson was advised her problems stemmed from depression due to her age and circumstances.
"I was insulted, but I went along with the antidepressants with the hopes it would cure me. Everything continued to get worse," said Nelson. "I was so scared. By the time I had scheduled the multiple appointments and tests, I was numb up my left foot to my ankle. My right foot and right hand were numb along with the right side of my face. The usual sensations I had felt with my hand were gone. If I tried to pet the dog, I couldn't feel anything."
According to the Lyme Disease Foundation, Lyme disease symptoms can often imitate other diseases and can be misdiagnosed. Some individuals do not notice the early indicators of the disease, such as flu-like feelings of headache, stiff neck, fever, muscle aches, fatigue and a possible rash from the bite. Once early indicators of the infection disappear, the disease can disseminate to other organs. The LDF indicates Lyme disease can adversely affect many portions of the body, such as the brain, eyes, skin, heart, joints, liver, lungs, muscles, digestive system and spleen and can affect pregnancy.
As time progressed, Nelson made repeated visits to the emergency room. Her ability to walk was gone. She no longer could complete simple, daily functions such as changing her clothes, bathing or brushing her teeth. Husband, Mike, and daughter, Madelyn, assumed the role as her caregiver. Since she is self-employed, she was did not receive disability benefits and was unable to continue working.
Then Nelson found her answer.
As she discussed her illness and what appeared to be a fatal outcome with her mother on the cold winter day, her mother mentioned Lyme disease and its symptoms. The discussion lead to research on the Internet and the shocking discovery that a majority of the symptoms Nelson was experiencing were also found in Lyme disease patients.
"I couldn't find any Lyme disease doctors in Minnesota or Wisconsin to confirm what I felt was wrong with me," explained Nelson. A specialist was located in Missouri and Nelson, accompanied by her husband, set an appointment.
"At that point, I had to ride in a wheelchair and be carried by Mike. I could barely handle the plane ride due to the pain," said Nelson.
Once at the Missouri clinic, a Western Blot test was done and sent to the Center for Disease Control lab and a Lyme lab, IgeneX Inc., in Texas. Nelson had been advised that it was the most clinically accepted test available. The test came back positive and Nelson began antibiotic treatment immediately. Her doctor also diagnosed her with Bartonella based on clinical observation, which involved a review of pictures and Nelson's recounting of an episode of being bit by sand flies in March 2004 while vacationing in the Caribbean.
Nine months after the diagnosis of Lyme and Bartonella, Nelson continues to improve. She has resumed her business and continues to strive toward a complete recovery while dealing with lingering systems such as cold hands and feet, ringing in the ears and tiring more easily.
Although she is significantly improved, Nelson still requires ongoing medical treatment.
"I need to take several types of antibiotics to ensure that I totally wipe out all forms of the Lyme bacteria in my system. I also take a lot of supplements aimed at fighting Lyme disease," said Nelson.
According to Nelson, she also took an antibiotic called Rifampin that was used specifically to treat Bartonella. "How one responds to an antibiotic is also an excellent indicator of which type of diseases one has," said Nelson.
Along with the ongoing antibiotic treatment, she continues to have a phone consultation with her Lyme doctor every four to six months and yearly visits. She also continues to have regular lab work done at a local clinic, which is faxed to the Missouri physician, to ensure there are no negative side effects from the long-term antibiotic usage.
Upon looking back, Nelson feels that the diseases have changed her life.
"Mike, Madelyn and my mom came through for me and they proved to be my saviors. I was also very surprised at other family members and friends who were there for me and so wonderful. I now personally have much more awareness of others around me who have special needs," said Nelson. "I feel less concerned about the day-to-day stuff and know that it will all work out. I try to remember on a daily basis how far I have come and how lucky I am to be walking around and just doing the small stuff."
Tuesday, December 27, 2005
A Winning Hand
Medical College of GeorgiaA decade and a half-ago, Tim Simpson was on top of the professional golf world. The Atlanta-based Simpson was a champion golfer with four PGA Tour victories who had twice finished in the top 10 on the money list and who had led the PGA tour in top 10 finishes in 1983 and 1990.
But in 1991, that life ended...
While on a hunting trip, Mr. Simpson contracted Lyme disease, but that was only the beginning. The previously strong and healthy Simpson found himself at the mercy of lingering illness, muscle joint stiffness and, worst of all, a tremor that developed in his left hand. To some, it would be considered just a flutter, but for a man who made his living from precise putts and perfect drives, a man who was considered one of the greatest ball strikers in PGA Tour history, the flutter effectively derailed his career.
“I struggled, trying to continue and fight back, taking medications that helped the tremor but left me groggy. The fact that I had no control over my essential tremor and its negative effect on my game nearly drove me crazy. But when I couldn’t hit a routine chip shot, at that point, I decided to retire from competition,” says Mr. Simpson. Ironically, the tremor usually occurred only while he was playing golf or was stressed or tired.
Still, Mr. Simpson never lost faith that someday, someone would be able to help him return to the game he loved. “A day didn’t go by that I didn’t miss it,” says Mr. Simpson. “My goal has always been to try to come back when I was 50 to play in the Champions Tour. One day, somehow, that was my goal.”
That day came when he met Dr. Kapil Sethi, a neurologist who was recommended to him by a friend. A golfer himself, Dr. Sethi understood Mr. Simpson’s urgent need to return to the game. And as director of the MCG Movement Disorders Program, Dr. Sethi understood the tremor that was preventing Mr. Simpson from playing golf.
“When we examined Mr. Simpson, we thought we could help him through a relatively new procedure called deep brain stimulation,” said Dr. Sethi.
DBS is a surgical treatment used to help control tremor, rigidity, slowness of movement and equilibrium problems associated with movement disorders. During surgery, electrodes are implanted into hyperactive areas of the brain that cause tremor. Wires from the electrodes are then tunneled under the skin of the neck down into a surgically fashioned pocket directly under the collarbone. The wiring is attached to a pulse generator, which is programmed to send targeted stimulation to the brain to help control symptoms.
Dr. Sethi referred Mr. Simpson to Dr. Joseph Smith, a neurosurgeon with the MCG Neuroscience Center, who examined Mr. Simpson and discussed the risks, goals and limitations of surgery. But not before the patient did his own homework on Dr. Smith. “I was told repeatedly by other neurosurgeons that he was the best of the best at DBS surgery,” Mr. Simpson says.
Ultimately, he decided to undergo the procedure. “It was a dream come true,” he says. “They gave me back the greatest gift of all, the gift of hope. Hope that I could be normal again and let my talent shine.”
Tim Simpson holds golf club during deep brain stimulation.With his wife, Leigh Anne, by his side, Mr. Simpson arrived at MCG Health System for his surgery last March. He was met by physician assistant Patrick Jenkins and Dr. Smith. After Dr. Smith reviewed Simpson’s MRI on the computer planning work station to determine exactly where the electrode should be placed, Mr. Simpson was wheeled to the operating room.
Inside the OR, a hush fell as the team began to place a 14-millimeter bur hole in the patient’s skull. Upstairs in the day surgery waiting area, Mr. Simpson’s wife and parents waited, tense but optimistic the surgery would go well.
About an hour into the procedure, Dr. Smith began the careful work of placing recording-stimulating microelectrodes into Mr. Simpson’s brain to verify the proper location of the target area as seen on the MRI scan. To ensure correct placement of these electrodes and the final DBS electrode, patients remain semi-conscious during surgery. This allows the neurosurgeon to bring out the tremor on command, and then check how the tremor is controlled when the stimulation is turned on. Mr. Simpson groggily said hello to Dr. Smith and Mr. Jenkins and asked how things were going.
“Tim, let’s see if we can get that tremor going,” said Dr. Smith. Mr. Simpson had brought one of his own golf clubs, which was now placed in his hand. He held it up. Nothing. The team waited. “During surgery, we try to use triggers selected by the patient to help bring out the tremor,” explains Dr. Smith. “That could include a coffee cup or pen. In Tim’s case, his tremor was mostly caused when holding a golf club, so that’s what we tried first.”
Next they tried a Styrofoam coffee cup. Still nothing. Next, Dr. Smith placed a cane in Mr. Simpson’s hand. Almost immediately, his hand and arm visibly shivered, then vibrated back and forth in a steady tremor. “There it is,” said Dr. Smith. “Let’s turn the stimulator on.”
Stimulation was applied in varying degrees of intensity until, all at once, the tremor stopped. Mr. Simpson recalls feeling electricity transiently go down his arm and his hand suddenly go still.
“Dr. Smith, as well as Patrick, had told me that during DBS surgery, the moment when the stimulator is turned on tends to be emotional for many patients when they realize that they aren’t shaking anymore,” says Mr. Simpson. “What I remember was the tremendous excitement in the operating room when the stimulator was turned on and my tremor stopped dead. My hand was solid as a rock. This was something I hadn’t experienced in years, and it was amazing.”
“Every time we are able to use this treatment to change someone’s quality of life for the better, it is an exciting moment,” says Dr. Smith. “In this case, seeing Tim’s tremor suddenly stop was even more satisfying, knowing that we were providing a chance for him to return to the life and career he loved.”
Tim SimpsonMr. Simpson remained in the 3 West Neuroscience Unit at MCG Medical Center for several days, then went home to Lake Oconee. Unable to resist the draw of the greens, he was back out working on his short game at his home course, the Harbor Club, in just three days.
“It was unbelievable to be able to go back out there, and not experience any tremor at all,” says Mr. Simpson. “I saw it in the hospital and at home, but I had to see it out on the course. When I was practicing out there is when it hit me. The second ball that I pitched from 15 yards went right in the hole, and that is when I started crying. I knew that my prayers had been finally answered.
“Dr. Smith, Dr. Sethi and Patrick have my sincere thanks for their amazing work as well as for their friendships.”
While Mr. Simpson continues to return to the MCG Movement Disorders Clinic for regular checkups and further programming on his device to enhance tremor control, he is 100 percent back to his golf career, busy traveling and competing in tournaments, his eye still on his goal of playing on the Champion’s Tour in 2006.
“Everywhere I go, there are articles written about my surgery and how I am coming back strong. I told Dr. Smith and Dr. Sethi before my surgery that if they could stop me from shaking, I would make them more famous than they already are,” jokes Mr. Simpson. “I plan on fulfilling my end of the bargain. It has been a while since I have won on the PGA Tour, but I assure you, I still know how to win.”
Saturday, December 24, 2005
Be on the lookout for Lyme disease
Maryland Community Newspapers OnlineOn a November day last year, Patty Belke’s 6-year-old son Jared came back from playing in the autumn leaves.
The family, who lives in Good Hope Estates, often made trips to the nearby Maydale Nature Center in Cloverly, but for Jared, this trip ended differently.
Patty Belke found a tick embedded on Jared’s back. The tiny bloodsucking insect had not yet swollen from feeding, and was roughly the size of a poppy seed. After its removal, the family thought no more of it.
Within two weeks, however, Jared had strange symptoms. His hands and feet felt tingly and painful, and other troubles soon followed.
‘‘[Normally,] we knew our child was very coordinated and highly intelligent,” Patty Belke said. ‘‘Within a couple of months, he had involuntary body movements, he was clearing his throat a lot ... he became oversensitive to light.”
The Belke family didn’t know it, but Jared had Lyme disease. The illness is prevalent in suburban and rural areas, where the deer that carry the diseased ticks can be found. A rash shaped like a bull’s-eye often results from the tick bite, but the rash does not occur in all cases.
The bacteria are sophisticated enough to bypass the immune system, and varied enough to manifest more than 100 symptoms. The disease’s variable nature makes it difficult for doctors to diagnose because it can mimic other illnesses.
‘‘Part of the misconception is if you have it, you’ll definitely get the bull’s-eye rash,” Patty Belke said, adding that her son did not develop the rash. ‘‘My son was tested twice by local doctors — both blood tests came back negative.”
Finally, the family contacted a California-based clinic that specialized in tick-borne diseases, and this led to a successful diagnosis.
Such problems are common for Lyme, according to Dr. Leila Zackrison, a Fairfax, Va., rheumatologist who specializes in identifying Lyme.
‘‘It is a bacterium, but it prefers living inside the cell” of infected tissues, she said. ‘‘It is genetically very sophisticated ... it can change the genes and the proteins at will, so it’s very hard for the immune system to detect it.”
Most people who suffer may not recall being bitten by a tick. Winter infections can be harder to diagnose because the symptoms match many cold-weather illnesses.
‘‘The usual season is June through the fall ... but there are late ones, especially if it’s been not so cold,” she said.
Lyme disease manifests itself by attacking three areas. If it affects the muscular-skeletal system, patients feel joint pains and muscle aches. If it attacks the nervous system, patients can suffer from tics and twitches, as well as paralysis in some cases. This variant also can lead to behavioral symptoms, such as depression, said Dr. Raphael Stricker, president of the International Lyme and Associated Disease Society.
Stricker said a strain of the bacteria has arisen along the East Coast that can target the cardiac system, leading to heart arrhythmia. Other symptoms include joint pains that can disappear and reappear, and also hallucinatory experiences such as hearing music.
The earlier Lyme is diagnosed, the easier the treatment, which consists mostly of antibiotics. More serious or chronic infections can lead to hospital stays and intravenous treatment, but Stricker said even a non-hospitalizing infection can be debilitating.
‘‘You still get chronic symptoms, like inflammation, which can be disabling — people have lost their jobs and livelihoods because of this,” he said.
The best approach is prevention, according to Zackrison. Homeowners should try to limit the number of deer that come into their yard, by putting up fences, for example. Parents should spray themselves and children with repellent, and should check for ticks after going out. Children are more likely to get ticks in their hair, ears, neck and armpits, while taller adults are more likely to get bites on their legs or groin. ‘‘If you’re on a property, make sure you clear the hedges, and don’t let underbrush or leaves accumulate,” she said.
If you do get a tick on you, it does not mean you automatically have Lyme disease, according to Marilyn Piety, manager of special projects of the Montgomery County Department of Health and Human Services. In her work with the communicable diseases program, Piety has learned that tick bites often take days to transfer the bacteria to victims.
‘‘The tick has to be on for a while — at least 48 hours — to give you Lyme disease,” she said. Further complicating the matter, adult ticks are not the only type that can transmit the disease. Younger ticks, known as nymphs, are equally to blame and much harder to see — sometimes as small as 2 mm across, Piety said.
For Montgomery County, which is less rural, the number of Lyme disease cases is relatively low compared to other Maryland counties, and Lyme cases have decreased each year since 2000.
In 2004, the Maryland Department of Health and Mental Hygiene’s Epidemiology and Disease Control Program reported 38 cases for the county, compared to 117 in Frederick County and 63 in Prince George’s. In 2003, Montgomery County reported 49 cases.
Jared Belke’s parents are thankful that his school notified them about his behavior changes. They found a specialist in Connecticut to treat him.
A year later, Jared’s symptoms are much milder, and he is taking antibiotics. Patty Belke said the medical costs have ranged from $10 to $100 per month, but that she had heard of acute cases costing up to $1,000 monthly.
The Belkes now use bug repellent and check themselves for ticks after each excursion. Jared still loves to play in the leaves, but he’s more careful, going in only up to his knees.
‘‘Every once in a while, he’d say, ‘I don’t like ticks — why do there have to be ticks?’ ” Patty Belke said. ‘‘But he takes the medicine and does what he has to do and he’s pretty positive through the whole thing.”
Tuesday, December 20, 2005
Indirect evidence of Lyme disease found in Okanagan
The Vancouver SunThe Interior Health Authority says it has found the first indirect evidence of Lyme disease in the Okanagan.
"We have been concerned it might be present in the Okanagan at very low levels and this recent information confirms the low risk," Dr. Rob Parker, medical health officer with the authority, said in a news release.
A man on Kelowna's Westside tested positive for Lyme disease in August but doctors don't know if he was infected locally or outside the region.
The B.C. Centre for Disease Control carried out tick and deer mouse collection in several areas in the Okanagan but only a few actually had Lyme disease.
"The findings are in some ways reassuring,"' said Parker. "Most of the ticks in the Interior are of a type not known to transmit Lyme disease."
Lyme disease can be a serious illness. Routine precautions while hiking are advisable, and early diagnosis is important as effective antibiotic treatment is available.
"This new finding doesn't change the advice we have routinely been giving the general public," said Parker. "People should take measures to prevent tick bites wherever in B.C. they are hiking out of doors during the spring, summer and fall."
The research project by the centre for disease control is one of several in an ongoing effort to determine the areas of the province most at risk for Lyme disease. The results confirm earlier studies, which show that Lyme is present in several areas of the province but that the ticks carrying the disease are still rare.
Each year in B.C., three to five cases of Lyme disease in humans are reported to public health authorities.
To help prevent tick bites, people are advised to wear appropriate clothing when walking or working in areas where ticks may be present, particularly from May to November.
People are also advised to walk on cleared trails; wear a hat, long sleeves and pants and light coloured clothing; tuck pant legs into socks or boots; and use an insect repellent containing DEET on clothing and exposed skin.
Sunday, December 11, 2005
Teacher faces health problems with courage
Portsmouth Herald News - Portsmouth,NH,USAThe well-known York, Maine, musician and guitar teacher has been dealing since early summer with a thus-far undiagnosed ailment that has left him legally blind in one eye and with declining vision in the other. Bracciotti, 54, has had spinal taps, CAT scans, intravenous antibiotics, an eye biopsy. He sees neuro-opthamologists, infectious disease specialists, neuro-oncologists.
Self-employed, as is his jeweler wife, Lauren Pollaro, he is facing upward of $100,000 in medical bills not covered by his high-deductible, catastrophic insurance policy that is proving woefully inadequate. He has to increasingly rely on others for simple daily activities.
And yet, he says, this has been one of the most enriching times in his life, and has changed forever how he will view himself in the future.
Bracciotti said his health problems probably began in June with a deer tick bite. Certainly, that’s when he began to track his problems. He had already had Lyme disease in 1997, and was familiar with its symptoms. Within days, he was running a fever and was put on antibiotics. Not long after, he felt intense pain in the back of his eyes. The diagnosis: Lyme meningitis, or swelling of the brain. More intense and intravenous antibiotics followed, and the pain subsided.
In early August, however, he noticed something wrong with his vision - a shimmering obstruction, like an amoeba, he said, on his left eye. A neuro-opthomologist from Massachusetts Eye and Ear Infirmary said his optic nerves were swollen. By the end of the month, his eyesight was rapidly diminishing. And his right eye was beginning to be affected. He was seeing a Lyme specialist in Boston by then, who - after a spinal tap and more intravenous IV - told him he did not think the loss of vision was caused by Lyme.
That’s when, in September, doctors began to suspect optic lymphoma - cancer. In early October, a biopsy was conducted and vitreous fluid from the eye extracted. It was tested - and no cancer was indicated. However, Bracciotti said, the test is right only 30 percent of the time. That’s where matters stand now, as he wonders whether he should have a more invasive operation where a slice of optic nerve is taken.
"My gut tells me it isn’t cancer - because I don’t want it to be," Bracciotti said.
Bracciotti, who has been on the music faculty at Berwick Academy and the Rivertree Center for the Arts in Kennebunk, and has a private studio in York , had to stop working in September, when he could no longer see well enough to teach.
"The hard part is that I pride myself on looking at my students’ technique. I want to be attentive and I can’t," he said.
The most difficult and the most rewarding aspect of his situation, he said, is how vulnerable he now feels. Difficult, because he can’t take care of his wife and child, 6-year-old Adrian, as he once did, working around the house, paying the bills. Difficult because "it’s hard for me to be beholden to others."
"I’m struggling with being overwhelmed. I’m struggling with getting my house in order - literally and figuratively - in case I lose more of my sight."
But it is rewarding, too, to realize how much people care about him.
In late October, local musician Joyce Andersen dedicated her last Sunday night show of the season at Inn on the Blues in York Beach to Bracciotti. She became involved after receiving a call from South Berwick musician and Berwick Academy teacher Chip Harding, who has known Bracciotti for years.
Among those performing that night in addition to Andersen and Harding, were Kevin Farley, Mike Rogers, Joe Rogers, Kent Allyn, Tom Richter and Andersen’s husband, Harvey Reid.
"We know how hard it is to be a musician with expensive and inadequate health insurance," Andersen said. "But we can’t know what it’s like to be going through what Stephen and his family are going through. It makes you want to do something."
The concert raised $2,800, which was funneled into a nonprofit organization started by Harding called Healing Vision. Healing Vision was formed specifically to receive donations from those who want to help out Bracciotti and Pollaro.
"That a couple who is doing everything right, who is working hard to be productive in their fields, to be good parents, to be good citizens can be hanging by a thread like they are, in the wealthiest nation in the world, is pretty pathetic," Harding said.
Bracciotti is overwhelmed by the outpouring of help he has received, from musicians, friends, family, even total strangers.
"I’ve shed more tears in the past three months than I have in my entire life," he said. "I keep thinking how can I possibly deserve this?
"My hope is that when I am whole again, I know I will be helping people in some way," he said. "I’ve always been a compassionate person, but I didn’t take the time. If I can retain enough vision so I am not completely blind, I want to work with people in a similar situation."
In the meantime, he is taking things one day at a time. He practices Chi Kung, a form of Tai Chi, every morning, and meditates every night to relieve the stress.
And he waits.
Lyme disease: The great masquerader
The Harvard PostThis year, my Labor Day weekend was dedicated to replacing a retaining wall. The original 90-foot structure, built with railroad ties, had eroded over the years, forming a massive jungle of rotting ties, thorny vines, and long grass. Several family members came to help, and I rented a Bobcat. We hauled old ties out of the tangled weeds on Saturday, and were covered with welts, dirt, and bug bites by the end of the day.
Starting the new wall on Sunday, I felt dizzy and weak. My helpers graciously offered to do the manual lifting, while I drove the Bobcat, but I barely had enough energy for that. I finally climbed out of the cab, and collapsed on my front yard. Thus began my descent into the puzzling and painful world of Lyme disease, where I learned firsthand how hard it is to be diagnosed and treated for this dreadful disease.
As I lay dazed in the midday sun, my neighbor, Brad, came over. He talked to the rest of my family, and helped move some ties. Had I been more coherent, I might have heard him say that his wife, Karen, was starting to feel numbness and tingling in her hands and feet. Feeling useless, I eventually just went to bed. It was Monday afternoon, 24 hours later, when I finally got up.
When I went to work on Tuesday, my neck was swollen and sore. I also had a large red patch across my back and chest that looked like sunburn. By Wednesday, my neck hurt so bad I couldn't move my head, and my shoulder ached. My chiropractor said that muscle strain could cause the pain, but he had no explanation for the red patch. A bull's eye rash would have been more recognizable, but Lyme disease doesn't always leave such obvious clues.
During the day, the pain was tolerable, but at night it was horrible. My various aches intensified around bedtime, and got worse when I lay down. I couldn't find a position for my arm that didn't hurt, and I rarely got more than three hours of sleep.
Then, for no apparent reason, my face started drooping on one side. For three days, I progressively lost motion in my mouth, cheek, and right eye. By Monday, two weeks after Labor Day, half my face was completely paralyzed. Talking, eating, and drinking were difficult, and I looked like the Hunchback of Notre Dame. Two contractors were helping me finish the wall, and one said to the other, "I don't like that guy; he doesn't show any emotion." I guess he was half right.
I had Bell's palsy, a paralysis of the face. My neighbor, Karen, who developed a milder version of the same thing, suspected Lyme disease, and convinced me I had it, too. Lyme disease comes from deer ticks, and I probably encountered one in the weeds by my wall. I took a blood test, and requested antibiotics to get a head start on the
disease while waiting for the results. Since I never saw the tick that bit me, and didn't develop a bull's eye rash (known as clinical evidence), my doctor refused to prescribe anything until the tests came back.
Karen had more trouble with her doctors. On the Wednesday after Labor Day, she had heart palpitations, a migrating pain in her leg, back, and arm, and felt constant numbness and tingling throughout the left side of her body. By the end of the week, she had headaches, and her arm was weak and wobbly. Afraid she was having a heart attack or stroke, Karen saw three different doctors that week. One said it was all in her head, another prescribed a tranquilizer, and the last said she should go home and have a beer.
Karen had two Lyme tests, both with negative results, so she requested something more reliable. This time, the test results showed Lyme activity, but not enough to be above the standard guidelines. Her doctor said she didn't have the disease, so Karen found a specialist on the Internet.
This 'Lyme Literate' doctor determined that Karen had the disease based on her symptoms (a clinical diagnosis). The activity seen on her previous test confirmed the diagnosis, so he prescribed an antibiotic. She needs to take the medication until one month after her symptoms go away. No one knows how long it takes to eradicate Lyme, because the bacteria hide from antibiotics and vaccines.
My Lyme test came back positive. I was given four weeks of an antibiotic, and all my symptoms were gone by the end of it. A few days later, though, I started having heart palpitations, tingling in my fingers, and pain in my elbows. Initial Lyme symptoms can diminish, even without treatment, while bacteria penetrate deeper into your system. This is known as Chronic Lyme, which may exhibit completely different symptoms. The clever masquerader can change its disguise to avoid detection.
My doctor wouldn't refill the antibiotic without more testing, so I called Karen's Lyme Literate doctor. He no longer deals with insurance, and charges $425 for the first visit (not counting lab fees). I called three other Lyme specialists, and they don't bother with insurance either. If my problems continue, I may have to raid my kid's piggybank. Just before Thanksgiving, Karen took her fourth Lyme test, and finally tested positive. Now she knows her medication should help, and that she's been right all along.
The number of Lyme cases in this region is astounding. Debbie directs a children's choir at Karen's church, and suffers from Lyme and Bell's palsy. She says that 11 people were stricken in Harvard this year, and learned that 15 doctors at a local facility are treating 10 cases of Lyme each. I met Darcy because she was describing her Bell's palsy at a party. She knows a third grader with the disease, a man on Stow Road who had it three times, and another boy who got it when a tick bit him in the eye. Many of these people, including Debbie and Darcy, had trouble getting diagnosed and treated correctly.
Considering the number of people with Lyme, and the amount of information available, it's puzzling why the medical community seems so unprepared to handle the disease. Maybe the reason is that Lyme isn't fatal or contagious. Or, perhaps, it's because treating the disease isn't lucrative for insurance and pharmaceutical companies. Or, maybe it's the elusive nature of Lyme bacteria. One thing is clear: Until doctors sort this out, people will continue to be ignored or misdiagnosed.
Whenever symptoms don't make sense, or won't improve with treatment, it might be Lyme masquerading as something else. Ignorance is not bliss when it comes to this disease, and help is available through numerous educational and support organizations on-line. As Karen says, "You need to be your own best advocate."
Friday, December 09, 2005
Educator, union leader dies
THE JOURNAL NEWS - Westchester,NY,USALongtime educator Richard T. Mullin, who for 30 years was president of the East Ramapo Teachers Association, died yesterday morning from complications of Lyme disease. He was 80.
"He was tough," said Georgine Hyde, who was an East Ramapo Board of Education member for much of his tenure and negotiated with him over union matters. "He was a very competent guy in his field, and he was a nice guy."
Mullin was born May 18, 1925, in Michigan to Edward and Ethel Bruckel Mullin. He attended schools in New Milford, N.J. After graduating from high school, he entered the Army and was stationed in Italy, where he was a member of the Fifth Army, 88th Infantry Division, the "Blue Devils," during World War II.
As a radioman, he won a Bronze Star for bravery in action. He was also in the Army during the Korean War. He attended Seton Hall University after leaving the military, graduating with a teaching degree in 1958.
He and Audrey Hartye were married May 28, 1955, in St. Peter's Church in Clifton, N.J.
The family moved to Rockland in 1962, into a house Mullin built in Blauvelt and where he lived until his death. He was hired by East Ramapo schools in 1962 as an English teacher and was as teacher and English Department chairman at Ramapo High School until 1995, when he retired.
His daughter said one of his passions was the teachers union.
"The East Ramapo Teachers Association has suffered a great loss with the passing of our former president, Richard T. Mullin," said Irene Bielski, the current president of the East Ramapo Teachers Association. "Mr. Mullin was instrumental in establishing and shaping the teachers association. His dedication to both the teachers and students of the district, throughout his well over 30 years of service, has left a mark on East Ramapo, which cannot be surpassed. He was the ultimate professional and will be missed tremendously."
Kyle Mullin Kitchenman described her father as a man of humor and principle who loved his family and had a special bond with his grandson, Willy, now a student at SUNY Cortland.
Survivors include his wife of Blauvelt; two daughters, Kerry Mullin Beckmann of Blauvelt and Kyle Mullin Kitchenman of Warwick, N.Y.; and two grandchildren. A brother, Edward "Micky" Mullin, died earlier.
Arrangements are under the direction of Moritz Funeral Home in Tappan, where calling hours will be from 7 to 9 p.m. today and from 2 to 4 and 7 to 9 p.m. tomorrow. A Mass of the Christian Burial will celebrated be at 10 a.m. Saturday at St. Catharine's Catholic Church in Blauvelt. A private family burial will be in Greenbush Cemetery.
Wednesday, December 07, 2005
Innovative Research Will Improve Understanding of Lyme and Other Tick-Borne Diseases
PRNewswireThe National Research Fund for Tick-Borne Diseases, Inc. (NRFTD) announced today it will fund two innovative pilot studies designed to advance scientific understanding of Lyme disease and other tick-borne illnesses. The studies will focus on the physical structure and genetic makeup of two different tick-borne bacteria, and will yield important information concerning their ability to establish infection and cause disease in human hosts.
"These projects will utilize cutting-edge laboratory techniques to help develop our understanding of two important human pathogens," said Leo J. Shea, III, Ph.D., Chairman of the NRFTD Board of Directors. "The data yielded will be of use to scientists in multiple disciplines associated with tick-borne diseases, and will drive further important laboratory and clinical research related to these organisms."
Nikhat Parveen, Ph.D. (Assistant Professor of Microbiology and Molecular Genetics at the New Jersey Medical School, University of Medicine and Dentistry at New Jersey) will use her award moneys to study an outer surface protein of Borrelia burgdorferi, the bacterium that causes Lyme disease. This protein, known as OspC, is thought to play a key role during early Lyme infection. However, some strains of B. burgdorferi contain a defective OspC gene and fail to cause infection in mammals. By studying the wide variation in OspC expression among different strains of the bacterium, Parveen will attempt to tease out the specific factors that promote its ability to infect and disseminate through human tissues. This work will also have implications for improved diagnostic testing and vaccine development for Lyme disease.
Timothy John Kurtti, Ph.D. (Professor of Entomology at the University of Minnesota) will investigate how the parasite Anaplasma phagocytophilum, which invades certain white blood cells when transmitted to humans, survives the drastic environmental differences between warm-blooded mammals and cold-blooded ticks. Using a new genomic technology called microarray analysis, Kurtti will determine the specific genes that become active depending on whether the bacterium is in tick or human cells. The results of this work will provide crucial supplemental information to the recently completed but unannotated Anaplasma genome, and will advance current understanding of the bacterium's ability to evade the immune response of its human host. Further, it will likely establish microarray analysis as an important new technology for studying other bacterial pathogens transmitted by ticks.
Recognizing the pressing need to understand and cure tick-borne diseases, the NRFTD and its team of scientific advisors developed an expedited funding initiative based on rigorous scientific standards designed to attract the best researchers in the world. In this initial round of funding, the organization received an impressive selection of grant applications from well-respected investigators in the United States, Europe and Australia. With as many as half of all households affected by Lyme in some endemic areas, and with Lyme case reports rising dramatically, the need to understand tick-borne disease has never been greater.
About the National Research Fund for Tick-Borne Diseases, Inc.
The NRFTD is a nonprofit organization devoted to funding scientific research in the rapidly expanding field of tick-borne diseases. It aims to advance scientific understanding of these complicated infections by sponsoring innovative research at premier institutions throughout the world.
The NRFTD was founded in 1999 to address the complex and critical research questions raised by thousands of patients afflicted with emerging tick-borne diseases, including Lyme disease, relapsing fever, anaplasmosis, babesiosis, bartonella and ehrlichiosis. The need for answers has grown markedly as Lyme disease continues to spread throughout the country and as other tick-borne infections have been recognized as public health threats.
For more information about the NRFTD, or to make a tax-deductible donation, please visit http://www.nrftd.org.
Let's Get Mald!
Global PoliticianThree people, who have shared ideas for months, are on a three-way call, discussing various ways they might help fight Lyme disease, the persecution of Lyme literate physicians, and, of course getting better treatment, earlier diagnosis, and the Yale fraud, too. Then, the conversation turns even more serious, suffering children. But, what could they do for children who were suffering with Lyme disease? They had just heard that Dr. Charles Jones, a renowned Lyme literate pediatrician who treats Lyme disease openly, was on the verge of losing his license. Now where would children go? Lightheartedly, a group's name was thrown out -- MALD (Mothers Against Lyme Disease). The conversation soon ended, but the idea was firmly planted. Why wouldn't a group like this work for Lyme disease? Does it sound far fetched? Sue Vogan, author of NCO: No Compassion Observed, doesn't think so.
Named in 1975, "Lyme disease is the most commonly reported and underreported, vector-borne disease in the United States." The information further states, "the Lyme disease infection in the US is caused by a spirochete called Borrelia (B.) burgdorferi. (A spirochete is a bacteria-like organism with a cylinder-like shape surrounded by an outer membrane.)." - A.D.A.M./American Accreditation Healthcare Commission. It is also an under treated disease, so say experts like Joe Burrascano, MD (Lyme Literate Medical Doctor - LLMD) and Lida H. Mattman, PhD (author of Cell Wall Deficient Forms, 3rd Edition).
The Q-RIBb© or Quantitative Rapid Test For Diagnosing Lyme Disease, was developed by Dr. Jo Anne Whitaker, president of The Bowen Research and Training Institute in Palm Harbor Springs, Florida, and her associates. Although accurate, not only for detecting Lyme disease and co-infections, it is not available for diagnostic purposes. Why? Could it be that if this test were made available, more victims could be treated for Lyme disease and co-infections? Is that such a bad thing? I suggest that it could be.
If a specialist, for arthritis as an example, diagnoses a patient with Lyme disease, wouldn't that mean the specialty business suffers? Wouldn't a patient, who insists on a specialist, be looking for yet another specialist? Perhaps they would be searching for a Lyme disease specialist because their current specialist doesn‘t treat Lyme disease? The pharmaceutical companies, who make drugs for arthritis, would certainly suffer because undoubtedly there would be less need for their arthritis specialty drugs, since Lyme disease is treated with antibiotics, among other medications. And the insurance companies, who are paying for the arthritis treatment, surely would suffer because treating arthritic fingers, for example, is obviously less than treating chronic Lyme disease on a monthly basis. According to a Red Orbit News article by Wendy M. Fontaine, dated November 19, 2005, The Low-Cost Remedy Prescription for Help: Indigent Drug Programs, "...93-year-old Ila Peters, a sharp-witted lady who is partially blind and has arthritis in her fingers. ...Normally, her pills would costs $363.00 for a 30-day supply..." Lyme disease, multi-symptomatic and difficult to cure, treatment with antibiotic alone is still less expensive.
Dr. Jo Anne Whitaker’s most common diseases and conditions connected to Lyme disease list is extensive. The inventory includes Alzheimer's Disease, ALS - Lou Gehrig's Disease, Bell's Palsy, Chronic Fatigue Syndrome, Fibromyalgia, Irritable Bowel Syndrome, Lupus, Multiple Sclerosis, Parkinson's Disease, Syphilis, Scleroderma, and Rheumatoid Arthritis. In addition to these, Dr. Whitaker states, "all rheumatological diseases and many connective tissue diseases may be Lyme-related." Could that be why so many victims are misdiagnosed or missed completely? Is this why the disease is underreported and under treated? Is this the reason that victims often are diagnosed with multiple ailments instead of Lyme disease? Wouldn't the symptoms from these multiple maladies, treated by many drugs, need various specialists, numerous hospital visits and surgeries? Doesn't this all line the pockets of hospitals, surgeons, physicians, pharmaceutical companies - even charity organizations who may prey on the sick for donations? If Lyme disease were the diagnosis, treated simply with antibiotics, would this not cut millions of revenue dollars?
Melissa St. James, her husband, and their children have Lyme disease, but only after being diagnosed first with Multiple Sclerosis, according to Christine Paluf's August 28, 2005 article appearing in The Herald Press. And Kriste, only 14-years-old, knows the Lyme disease medication she is taking by heart, per Bella English's column on June 1, 2005, The Boston Globe. One can only imagine the medical misery these victims went through or the dollar amount spent just to find out that Lyme disease could have been clinically diagnosed on the first visit.
Sue Vogan cannot imagine children having to suffer with the disease she has lived with since being diagnosed in 1997. If she hasn't heard most of the horror stories, she has lived them. Sue's not alone. Everyday, there are thousands who are hearing everything from it's all in your head to your chronic Lyme disease is cured. Sue understands what it is like to watch a child suffer or to lose a child to a disease. Her daughter-in-law, 28-year-old-Kari, succumbed to cancer over three years ago. Sue's granddaughter, Courtney Rose, is motherless and pain from the loss lingers. Kari is still sorely missed. Wouldn't you miss your child, grandchild or another family member if they were gone? What if you could do something about it? Would you?
Sue thought about Candy Lightner, who in 1980, with a group of mothers, got fed up. Mothers Against Drunk Drivers (MADD) was born out of a need to take action. To date, they have over 600 chapters and are making a big impact in their battle against drunk drivers who take lives. Isn't Lyme disease taking innocent lives? Sure it is. There are heartbreaking stories of children everywhere who cannot function because of Lyme disease. Has anyone died because of Lyme disease? You bet they have. Ray Hartmann, Riverfront Times, January 12, 2000, writes a tragic story about Sarah's mother, Makia, who died from Lyme disease, leaving her daughter without a mother; Tom and Karen Forschner, founders of The Lyme Disease Foundation, lost their son, Jamie, to Lyme disease; and the list goes on.
In a December 2005 article written by Marjorie Tietjen, "Lyme Disease and many coexisting infections are beginning to affect everyone...whether directly or indirectly. These infections are intentionally being allowed to spread. Government agencies and universities, Yale being one of the main culprits, are blocking the appropriate care of those diagnosed with chronic Lyme. Curative treatment is also being withheld from those who have been misdiagnosed with other chronic conditions or autoimmune illnesses. The public's attention is being diverted from this already existing pandemic, while the authorities are feverishly promoting the fear of acute exotic flu-like illnesses whose effect on society so far is nil and cannot even be compared to Lyme disease and it's co-infections. The disease complex known as Lyme disease is having a devastating widespread impact on our country and the world."
If it worked for MADD, why not for this debilitating and deadly pandemic infection that is taking lives all over our world? If we can get mothers to join together, get organized to fight for diagnosis, treatment and insurance coverage, it would be a start at saving the children who are suffering from this cruel disease. The government listens to MADD, why not MALD? Do we deserve anything less than appropriate healthcare for our children? Can we stand idly by while doctors are being persecuted for treating our young Lyme disease victims? When, if not now, will we stop allowing our children to suffer and die from Lyme disease?
This is not flu or a common cold -- and it's not going away. Lyme disease is second only to HIV/AIDS; presents with symptoms that only a Lyme Literate Medical Doctor (LLMD) can recognize and treat; and current testing is plagued by inaccuracy (insensitive resulting in false negatives/positives). Grants are awarded, but very little research information has been useful with regards to diagnosing and treating; the government downplays the disease, therefore making the treatment protocols controversial; and even though the Center for Disease Control (CDC) has clearly stated that lab testing is only for statistical purpose, victims have been overlooked because the results from the insensitive testing available has returned a negative result or never tested at all because they do not present with the EM rash.
Physicians take an oath at the start of their medical careers. Only the caring have taken that oath seriously and fewer yet are going one step further by treating Lyme disease - the disease the government, for whatever reason, doesn't want investigated and cured. It's time to stop going after the LLMDs, the heroes who treat against the grain to save lives. At the same time, the government needs to start helping us instead of allowing us to be hurt by underreporting, under treating, and ignorance or obstinacy in the medical community.
The media has covered this disease far and wide. However, the media cannot truly know the pain and agony associated with Lyme disease. Abstracts have come out of NIH and other agencies, but the authors cannot appreciate the victims who have lost everything in search of diagnosis, treatment and insurance payments. There’s even a $20,000.00 reward being offered by the Hartford Lyme disease support group to anyone who can prove without doubt, that the Lyme disease organism, in all its forms, can be totally eradicated within 21-days. I spoke to Randy Sykes, the group’s point of contact. He stated that it’s ridiculous to think that Lyme disease can be cured by the standard protocol currently being used that they just had to offer a reward. To date, no takers. Does it mean that no one can prove this, thereby proving the 21-day "cure" is a farce? Organizations and associations have been formed to further the Lyme disease cause, but the conferences and newsletters haven't been able to make the impact that a group of mothers, like those with MADD, can make.
There is no one that can get more done than a group of mothers. Add in their sick children and you have the strength and determination of an army. I am calling on all mothers to come together to demand better education for our physicians, insist that more reliable testing be made available, earlier clinical diagnosis, long-term treatment, and complete insurance coverage. If Cindy Lightner and her group can do it, so can we! The time is now; the way is clear; and the results, an end to children suffering with Lyme disease.
Sunday, December 04, 2005
Phillips: Unite in fight against Lyme disease
The Cape Codder on townonline.comA Florida State quarterback is found half-naked and disoriented in downtown Tallahassee. Pop singer Daryl Hall cancels part of his national concert tour. Author Amy Tan is writing a new book about it.
The picture is clear: Lyme disease has hit the front burner.
Lyme disease is a major public health problem and growing crisis. It's the most prevalent bug-borne illness. According to the Centers for Disease Control and Prevention, new cases are reported in about 20,000 people yearly and this number represents a 10-fold underestimate.
Lyme disease is caused by a complex bacterial agent carried and spread by ticks. The Lyme bacteria have the ability to evade immune destruction, entrench themselves deep within tissues and migrate throughout the body with impunity causing a multi-system illness that can be baffling to many physicians.
The result is that one tiny tick bite can cause innumerable symptoms running the gamut from muscle and joint pain to heart disease to neurological and even psychiatric illness. Lyme patients may be misdiagnosed as having other serious diseases such as lupus, multiple sclerosis, rheumatoid arthritis and psychiatric disorders. The take-home message is Lyme disease may be hard to diagnose and difficult, if not impossible, to fully eradicate if not caught early.
Why is that?
First, there is no single reliable diagnostic laboratory test. The common two-tiered blood test cannot be solely relied upon for diagnosis. The initial ELISA screening test can give up to 50 percent false negative results, and just as disheartening, many laboratories interpret the second Western Blot test by highly restrictive CDC criteria that miss many cases.
Better tests are described in the medical literature, but haven't seen the light of day. So some patients seek more sophisticated testing by approved reference laboratories - labs within a single state that get samples from around the country - but which often don't take their insurance companies and frequently pay for their tests out-of-pocket.
Furthermore, a person with Lyme disease may be co-infected with other organisms, and "co-infections" often require different antibiotic therapy compared to Lyme.
Second, there is no universally accepted treatment. During chronic infection, the organism burrows deep into tissues that some antibiotics can reach only marginally. This is but one of many reasons why a two-to-four-week treatment cannot eliminate chronic infection.
The consensus opinion of the International Lyme and Associated Diseases Society is that an individualized treatment approach is necessary based on clinical judgment.
ILADS is a multi-specialty medical society comprised of virtually all sub-specialists who treat Lyme disease, including infectious disease specialists, neurologists, rheumatologists, psychiatrists, endocrinologists and internal medicine physicians. We've published diagnostic and treatment guidelines in peer reviewed infectious disease medical literature, which stand in stark contrast to the guidelines of some infectious disease specialists who reject voluminous medical data documenting persistent infection and co-infection.
What should be done?
We, the clinical doctors who man the frontlines of treatment, extend an olive branch to our colleagues with divergent opinions to work together to develop practical diagnostic and treatment protocols.
We believe it is essential for patients with Lyme disease symptoms to be tested for multiple tick-borne disorders. We know better tests exist and recommend the entire medical community push for them.
We encourage the education of all medical personnel about the array of Lyme disease symptoms and its related infections in order to increase the number of health care providers who can recognize and treat these illnesses.
In the early days of the AIDS epidemic, activists screamed for attention to get medical care. We hope Lyme patients are not forced to follow the same path, but we will not be content until Lyme disease is yesterday's news.
Physician Steven E. Phillips of Wilton, Conn., is president of the International Lyme and Associated Diseases Society.
Thursday, December 01, 2005
Review of treatment options for lyme borreliosis.
Taylor RS, Simpson IN.Micron Research Ltd, Ely, UK. rod.taylor@micron-research.com
Lyme borreliosis (Lyme disease) is the most common tick-borne bacterial infection and the incidence is increasing in parts of Europe and the USA. Prompt antimicrobial therapy using oral agents such as doxycycline or amoxicillin is successful among more than 90% of patients. Inadequate penetration of oral agents into the CNS may result in the development of overt neuroborreliosis. The parenteral agent ceftriaxone is the drug of choice for severe acute and chronic infections, due to good penetration into CSF, convenient single daily dosage regimen and proven high efficacy in clinical trials involving a wide variety of disseminated infections. Regardless of therapeutic agent, there appears to a small minority of patients (<10%) who do not respond; such cases may be due to long-term persistence of borrelial cysts and to misdiagnoses based solely on seropositivity. Several adjunct therapies are available, including hyperbaric oxygen therapy and immune system supplements, but clinical trials have yet to be conducted.
PMID: 16315580 [PubMed - in process]