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Wednesday, September 28, 2005

Wurtzberger dodges the Lyme bullet

Sleepy Eye Herald Dispatch
The first sign something was wrong was the bulls-eye shaped rash. But when Dylan Wurtzberger began sleeping for 22 hours a day, something was definitely wrong.

"It happened on July 23, and went from there," said Dylan's mom, Sheila.

Soon Dylan was complaining of a stiff neck and a headache. "This from a kid who never has headaches," Sheila said.

"I was sleeping for nine-tenth's of the day, and hardly eating anything," Dylan said last week, after football practice.

Doing some research, Sheila found that Dylan's symptoms fit those of Lyme disease, a bacteria-caused illness spread by deer ticks.

And Dylan had just returned from camping in the woods at Cross LakeŠ

The 12 year old was finally diagnosed with Lyme on Aug. 5, at the New Ulm Medical Center.

"Dylan had several rashes," said Dr. Clifford Wu, the pediatrician who treated Dylan. "That was a sign the Lyme disease was spreading, and had gotten into this spinal fluid.

"At that, we realized the treatment had changed, and he would need I.V. treatment."

Lyme disease affects the skin, joints, nervous system, and heart, among other parts of the body. If Dylan had been left untreated, "he would have been miserable," said Dr. Wu. "He would not have been able to live a normal life."

Wu said that Lyme meningitis "is not a surprising thing to come across. It's the second one I've seen since I've been here in 1999.

"The testing is a whole lot better now than it was, say, seven years ago. But you don't need a test to be treated for it now-the typical rash is enough to start treatment."

Dylan had to go to the New Ulm Medical Center every day for a week for I.V. treatment. Then, on Aug. 11, he had a PICC line put into his hand.

"It went directly to the main vein of his heart," said Sheila. "A home health nurse came over every day after school for three weeks."

"I didn't feel it much. I just felt cold," Dylan said, of the treatments.

On his first day of school, Dylan's classmates were naturally curious about the device in his hand.

"They said, 'How'd you get that?' and 'What's that in there?'" he said last week. "I said I got it from a tick at camp. After the first day, they didn't make a big deal."

When the daily treatments were finished, home health care nurse Rhonda Dahlgren removed the PICC line, and Dylan was free Š free, but careful.

"Watch out for ticks!" he said, asked how he's going to avoid getting sick again.

"Parents do need to be aware of what to look for," Sheila said.

Monday, September 26, 2005

Cases of tick-borne disease double

NZZ Online
The Federal Health Office has sounded the alarm after a sharp increase in the number of people developing inflammation of the brain following tick bites.

It said this week 141 cases of tick-borne encephalitis (TBE) had been reported in Switzerland by mid August - 55 per cent more than in the same period last year.

The Health Office is recommending that people living in affected areas get vaccinated against the disease, which can kill.

Regional variations are pronounced, with about 96 per cent of this year's cases involving residents of high-risk areas in German-speaking Switzerland.

Canton Aargau has been particularly hard hit, with large increases also reported in the cantons of Lucerne, Zurich and St Gallen.

About half of those who acquired the disease were bitten by infected ticks while on walks in the forest.

"Data is still lacking on why certain areas have been particularly hard hit," said Hanspeter Zimmerman, a Health Office expert. "It is possible that there are more infected ticks, but we do not know."

According to Zimmerman, between about 0.5 and three per cent of ticks are infected. The weather could be a factor in the increase in cases of tick-borne disease, he told swissinfo.

"Activity of the ticks depends on the climate", explained Zimmerman. "They don't like if it is too hot or too dry."

Encephalitis is a medical term for inflammation of the brain.

Symptoms may include severe headache, stiff neck, fever or vomiting, aversion to bright lights, and sometimes a rash. But not all symptoms need be present.

TBE has to be differentiated from Lyme disease, which is also transmitted by tick bites and affects the skin, the joints, the brain and the heart.

Lyme disease, a bacterial infection, occurs far more frequently than TBE.

Whereas the distribution of TBE is localised, Lyme disease occurs throughout Switzerland, according to the Health Office.

Not everyone who is bitten by an infected tick gets ill, says Zimmerman.

"Some people who are bitten don't have symptoms, others have flu-like symptoms. But it can develop into a dangerous illness, for which there is no specific medicine or treatment," he explained.

Between 75 and 80 per cent of those infected require hospitalisation and around one per cent of patients die.

The Health Office is recommending that all residents living in at-risk areas be immunised.

"The vaccine is safe and efficient," said Zimmerman.

An additional concern of the Health Office is that the population in affected regions is insufficiently informed as to the dangers of tick bites.

In addition to being immunised, people in at-risk areas are advised to wear clothing enclosing the arms, wrists and legs when they head into forests or fields.

It is also recommended that they check their body and clothing for ticks after being in the woods, that if ticks are found they are immediately removed, and that the exact time of any tick bite be noted.

Lyme disease symptoms still affect local resident

It's been almost a year since Carol Cline first told News-Tribune readers her story about her struggle Lyme disease - and she's still getting calls from people who want more information.

"They don't always remember my name, but they remember the article and the disease," she said. "I talk to them about their symptoms and in some cases, they've been diagnosed with other diseases. I give them names and numbers of various Lyme specialists."

Cline, who works as a receptionist at the Mineral County Board of Education, is currently taking in excess of 30 pills a day to battle symptoms of the disease, which is an infectious, immune mediated multi-symptom disease. According to Lyme disease Web sites, the bacteria which causes Lyme is transmitted to humans by the bite of a deer tick.

Cline first started seeing symptoms in May 2002. After visits to the emergency room and 14 different doctors, she finally found a neuromuscular forum online which listed a Lyme disease Web site which listed her symptoms.

After visiting a Lyme specialist in Washington, D.C., she started on antibiotics in February 2004. She has been on the protocol of more than 30 pills a day since May.

"I'm currently on 1,000 mg of Ceftin and 200 mg. of minocycline, which are antibiotics," she said. "I have a B12 shot once a week and four nystatin tablets (an anti-fungal) every day. There are also numerous vitamins and supplements."

She said treating the disease is expensive, as the Rocephin IV antibiotic is $200 a day.

"That's just for the antibiotic. That didn't include the PICC (peripherally inserted central catheter) line in my bicep and I had to have a nurse visit once a week to change the PICC line dressing."

She's also had more than 200 bicillin shots, which are approximately $50 each.

"That's $10,000 right there in bicillin," she said.

The main symptoms she's still experiencing are her eyes are still sensitive to bright light and she still has a buzzing in her legs and feet.

"I'm sensitive to bright sun, even bright overcast," she explained. "It (Lyme disease) is particularly difficult to eradicate from the eyes because it's difficult for the antibiotics to cross the blood-brain area."

She said the buzzing runs along the nerve pathways in her legs and feet, although when she keeps busy, she doesn't notice it as much.

"It's hard to believe after all the antibiotics that I'm still having active symptoms of Lyme," she said.

Other than the sensitivity to light and the buzzing in her legs, Cline feels well. She's even joined a gym in January.

There is currently no cure for Lyme disease and the disease can become resistant to medications.

"After the antibiotics stop and you think you're cured, you can relapse days, weeks, months or years afterward," Cline said. "It is much harder to treat the second time around because it (the Lyme disease) blends in and camouflages itself in the body."

She said every so often she has to switch antibiotics and Lyme can go into cyst form, which makes it virtually impenetrable.

Cline's doctor, who now has an office in Towson, Md., has a master's degree in public health and nutrition, which is why most of her pills are vitamins and supplements, she said.

"He advocates exercise also because it helps to strengthen the immune system. He said you can't just lay on the couch and let the antibiotics work," she added.

Since she was diagnosed with Lyme, Cline has become somewhat of an expert on the disease.

"Before I got stricken with it, I knew a little about it," she said. "I just thought it's a bug bite. You take antibiotics for three or four weeks and that's it. That's what I thought."

She noted there are a few very good Web sites where you can find more information on Lyme disease, including www.lymenet.org, which has a very active discussion forum, and www.ilads.org. Many Lyme Web sites list the many symptoms, including those Cline had, which are fever, fatigue, swollen glands, pulse skips, twitching of the face or other muscles, headache and loss of muscle tone.

Cline said if you have many of the symptoms and feel you might have Lyme disease, finding a specialist is essential.

"You can have a flaming, raging case of Lyme disease and still have a negative test result," she said. "If you feel you have Lyme disease, you have to find a Lyme specialist because it is ultimately a clinical diagnosis."

Friday, September 23, 2005

Mayersohn Pushes Changes In Treatment Of Lyme Disease

Queens Chronicle
Assemblywoman Nettie Mayersohn of Flushing has been instrumental in changing state regulations regarding the treatment of Lyme disease. Five years ago, several people who suffered from the debilitating disease brought their concerns to her for further investigation. Apparently, some physicians were being penalized by insurance companies for prescribing extended antibiotic treatment for patients.
At that time, long-term antibiotic treatment for Lyme disease was not so common, although now it is a routine procedure. As a result of complaints by insurance companies over rising costs, several doctors treating Lyme disease faced charges and serious discipline, one even had his license revoked, according to Mayersohn.
She and other legislators contacted Governor George Pataki to discuss the problem. Over the next few years, in conjunction with the Office of Professional Medical Conduct, they worked out ways to protect these doctors while also not hindering the ability of the state to prosecute and discipline bad practitioners.
In June, OPMC Director Dennis Graziano issued a memorandum noting that it is contrary to the policy and practice of his agency “to identify, investigate, or charge a physician, physician’s assistant or specialist assistant based solely on that practitioner’s recommendation.” However, those physicians who may actually hurt a patient will still be subject to strict disciplinary action.
The memo specifically refers to the treatment of Lyme disease and other tick-borne diseases. Lyme disease can cause serious joint problems and other health issues if not treated quickly or effectively.
Although more common in rural areas, the city Department of Health reported 357 cases in the city last year, but it is believed that 85 percent of them were contracted outside the city. Infected deer ticks are usually found in high grass.
The disease is spread when the tick bites a human. Often the gorged bodies of the ticks remain on the skin until removed.
To prevent infection, wear light-colored clothes, tuck pants into socks and wear closed-toe shoes when walking in brush-covered areas. The ticks are most prevalent from the spring through the fall.
The city DOH recommends that while outside in rural areas, people should use DEET insect repellent. After returning from outdoors, check skin for attached ticks.
Ticks should be removed carefully with tweezers. Do not handle them. Wash the area of the bite after removal.
The disease is named after Old Lyme, Connecticut, where it was first discovered. Symptoms include a bull’s-eye ring around the bite, headaches and joint aches.
Dr. Joseph Burascano, a Lyme disease specialist, applauded the new state policy. “The pressure is now off Lyme-treating physicians in New York and is certainly a reward for all the hard work and efforts of the Lyme community.”
Mayersohn promises to make sure the policy is carried out as written. Her efforts were praised by the Lyme Disease Association and Voices of Lyme/NY.

Wednesday, September 21, 2005

Neuropathic pain a lucrative drug target

United Press International
WASHINGTON, DC, United States (UPI) -- The company that can develop an effective, easy-to-use drug specifically for neuropathic pain should enjoy outstanding revenues, industry analysts predict.

Datamonitor PLC, a business information company in London, reported this outlook in a statement released last week. The company looked at seven major markets -- including the United Kingdom, the United States, Japan, France, Germany, Italy and Spain -- and found that among $2.5 billion in sales for pain drugs, not one compound has been developed specifically for neuropathic pain use.

Unlike nociceptive pain, which is a message from an injured area of the body to the brain that subsides when the injury heals, neuropathic pain seems to be generated by the nerves themselves. There usually is no active injury present when the pain is experienced, and it often grows worse over time.

Remedies for nociceptive pain, such as NSAIDs and opioids, do not work for neuropathic pain, which is only marginally affected by opioids and responds best to anti-convulsants and tricyclic anti-depressants that block the brain`s neurotransmitters.

The classic example of neuropathic pain is phantom-limb syndrome after amputation. Although a part of the body has been removed, the patient often experiences what feels like stabs of pain throughout the missing extremity (neuropathic pain is often described as stabbing, searing or burning).

Diabetes, AIDS, multiple sclerosis, fibromyalgia, chronic-fatigue syndrome, reflex sympathetic dystrophy, Lyme disease and shingles (caused by a virus similar to chickenpox) also produce neuropathic pain, and people with these problems will form a large part of the projected neuropathic pain drug market.

As of June 2005 only five drugs had been approved by the Food and Drug Administration to treat neuropathic pain:

-- gabapentin, marketed by Pfizer as Neurontin, the gold-standard drug used in over 50 percent of cases and originally developed to treat depression;

-- lidocaine, marketed by Endo Pharmaceuticals as Lidoderm, a local anesthetic;

-- carbamazepine, originally marketed by Novartis as Tegretol, an anti-convulsant;

-- duloxetine, an anti-depressant marketed as Cymbalta by Eli Lilly, and

-- pregabalin, also marketed by Pfizer as Lyrica, another anti-depressant.

Neurontin recently lost its patent protection in the United States, and a number of generic versions are now available.

Most of these drugs need to be taken four times a day, opening a space for a pharmaceutical that requires less from the patient.

'Patients with neuropathic pain usually require several upward titrations of their pain medications before adequate pain control is achieved,' said Clare Churchill, a healthcare analyst for Datamonitor, in the company`s statement. 'This can be particularly difficult if the patient must go through a difficult administration method a number of times before any results are seen.'

Because many neuropathic-pain patients also are being treated for other conditions -- and therefore already must endure challenging pharmaceutical regimens -- Churchill said medication that could be taken orally once a day and would not negatively interact with other drugs would be ideal.

Datamonitor reported there are at least 97 compounds in development for the treatment of neuropathic pain, making it one of the most active pipelines in the central nervous system area. The company`s analysis showed competition is centered on improved dosing formulations, but any serious drug would need to be at least equivalent in safety and efficacy to gabapentin and would need to demonstrate proven pain-reduction ability of greater than 50 percent in a significant majority of patients.

Dr. Michael Ferrante, director of the Pain and Spine Care Center at the UCLA Medical Center in Los Angeles, said he would be delighted to see new pharmaceuticals developed for neuropathic pain in the near future.

'Neurontin was a great step forward because it had a low side-effect profile and produced very quick results,' Ferrante told United Press International. 'Cymbalta, the newest medication, is more effective, but carries a significant risk of nausea. Lyrica is five times as effective as Neurontin, with a similar low side-effect profile, but is listed as a scheduled medication because it can potentially cause euphoria.'

Ferrante said there is a strong need for an effective drug against neuropathic pain that has a low risk of side effects.

'People have been suffering for years with neuropathic pain, which is terribly debilitating,' he said. 'We need a home run for them.'

Churchill said pharmaceutical companies also should consider devoting time and money to explore the pain-drug market in Japan, where neuropathic pain currently is treated with nerve blocks and vitamin B alone.

'Educating Japanese physicians on the use of the few current medications for neuropathic pain will be expensive and challenging,' she said, 'but the company that can do this effectively will reap a huge reward. There are a lot of sales out there.'

Glory bid boost for Norfolk archery star

Eastern Daily Press
Norfolk archery star Mel Clarke has been given a big boost as she prepares to take on the world. The 23-year-old world No 1 disabled archer from Taverham, near Norwich, was presented with a special new wheelchair. It has an e-motion control that will increase her mobility and give her a more stable platform from which to fire her arrows and hopefully give her the edge over her opponents. The wheelchair will be put to its first big test this weekend in Italy, where she will be competing in the World Disabled Archery Championships - after the honour of carrying the Union Flag in the opening ceremony. The presentation was made at the Proclaimers Church, Hellesdon High School, and followed a fund-raising campaign led by church member Sandra Gill. The original appeal target was £5000, enough money to buy the wheelchair, but a total of £8251 was raised, providing additional funds to support Mel's travelling and equipment expenses.

Norwich-based Able Community Care set the fund-raising ball in motion with a £1000 donation.

The company also launched a 52p appeal, encouraging people to give a minimum of one penny a week for a year to the fund, and that raised over £800.

Other highlights included £2600 from a ladies evening organised by Sandra Gill, Gillian Crossland and Gill Greengrass; £750 from Barclays Bank; over £800 from a quiz night; and £322 in sponsorship from Dennis Bartram, who ran the Brandon half-marathon.

“The wheelchair is absolutely fantastic,” said Mel. “It means that I will use less energy getting around and will be able to focus all my attention on the archery.

“I am delighted to have been invited to carry the flag at the World Championships' opening ceremony, and will do all I can to win gold for Great Britain, Norwich and Norfolk. Thank you so much to everyone who has contributed to Sandra Gill's appeal.”

Sandra Gill said: “Mel is an inspirational person. She has pressed forward following great difficulties with wonderful determination. We wish her luck in Italy and hope that the wheelchair will help her win gold.”

Mel, who took up archery over six years ago, has been wheelchair-bound since the age of 11.

She has a form of arthritis called reflex sympathetic dystrophy. Two years ago she contracted Lyme disease, a near-fatal disease which left her paralysed from the waist down and blind in the right eye.

Mel won gold at the European Disabled Archery Championships in Poland in 2002. She represented the full UK women's team in June 2003 at the XVI Golden Arrow Grand Prix in Antalya, Turkey and won a silver medal.

She currently holds 20 county records, 10 national able-bodied records and six International Paralympic Committee world records. Her main ambition is to represent the UK at the 2008 Beijing Paralympics.

Tuesday, September 20, 2005

Does chronic Lyme disease play a role in CFIDS?

CFIDS CHRONICLE A quarterly publication of the CFIDS Association of America, Spring 2005

Chronicle Q & A The Chronic Lyme Disease Controversy
by Angenette Rice-Figueroa, Publications Director

Chronic Lyme disease is raising baffling scientific questions for clinicians and researchers. Patients are also confused since overlapping symptoms make it difficult to determine if they have CFIDS, FM or persistent Lyme disease. Here, one clinician and Lyme expert weighs in on the Lyme controversy.

Clinicians and researchers are involved in a debate over the existence of persistent or chronic Lyme disease. Some doctors classify Lyme disease as chronic when its symptoms persist even after antibiotic treatment therapy. Other clinicians and researchers believe there is no such thing as chronic Lyme, but that an initial Lyme infection may have triggered the onset of chronic fatigue and immune dysfunction syndrome (CFIDS) or fibromyalgia(FM). Still another group question the plausibility of Lyme disease being a causative factor in CFIDS and FM.

Lyme disease itself originally became known in 1975 after researchers began studying the cause for a large cluster of juvenile rheumatoid arthritis cases in and around Lyme, Connecticut. The researchers soon discovered that the children were suffering from a multisystem inflammatory disease caused by a bite from a deer tick. That bite
transmits in infection with a spirochete or spiral-shaped bacteria known as Borrelia burgdorferi.

The issues about chronic Lyme don't stop with the question of its existence. There's also controversy surrounding diagnosis and treatment. The symptoms of persistent Lyme disease are remarkably similar to CFIDS and FM - flu-like illness, fatigue, muscle and joint aches, and neurocognitive dysfunction - making it nearly impossible to distinguish between the illnesses.

A distinctive symptom of Lyme is the erythema migrans, a red bull's-eye-shaped rash that forms around the area of a tick bite. Although this rash is a sure indicator of Lyme bacteria, it doesn't appear in all tick bites. Just as with CFIDS and FM, the diagnosis for Lyme disease is primarily clinical. Clinicians use a detailed medical
history and careful examinations to rule out other disorders first, and then rely on lab tests to back up the diagnosis of Lyme disease.

The problem is that no single blood test provides definitive results. Two of the most commonly used tests are the enzyme-linked immunosorbent assay test (ELISA) and the Western Blot, both of which test the blood for evidence of antibodies created to fight Borrelia burgdorferi bacteria. Unfortunately, the results of both tests can be inaccurate, and analysis methods are not always the same from lab to lab. The ELISA test can show a false negative if performed too soon, and a positive ELISA should be confirmed with a Western Blot.

Lyme bacteria attach themselves to proteins, creating a disguise and defying detection, allowing the bacteria to enter the nervous system. Once the bacteria enter a cell, the immune system can't 'see' them and therefore doesn't know to create antibodies. So while a Western Blot may be more accurate, neither it nor the ELISA tests is useful once the body has ceased creating antibodies.

The US Department of Health and Human Services reported in 2003 that National Institutes of Health (NIH)-sponsored researchers began re-evaluating the existing tests and developing new, more reliable tests. But even after a positive diagnosis is made, many physicians disagree on adequate treatment duration. Suggestions run the gamut from 6 weeks to as long as 36 months. NIH-sponsored researchers are also studying how best to treat chronic Lyme disease.

One of the clinicians interested in chronic Lyme is Dr. Joseph Jemsek, founder of the Jemsek Clinic in Huntersville, North Carolina. Dr. Jemsek's practice treats thousands of HIV, CFIDS and chronic Lyme patients from across the country. In this interview, Dr. Jemsek offers some thoughts on the chronic Lyme puzzle.

Q. Do you think chronic Lyme exists?
A. Yes, I certainly do. As early as 1985 I diagnosed and treated an occasional patient with Lyme disease. Based on that experience, I am convinced that the Borrelia burgdorferi bacteria that cause Lyme disease can persist and cause chronic or recurrent symptoms. I also believe that chronic Lyme is the ringleader in many other illnesses, especially when symptoms of immune dysregulation exist.

Q. What are the problems with testing methods?
A. The biggest problem is a lack of standardised testing, and the tests we do use can be problematic, especially if they are performed either too early or too late into the illness. Too early into he illness antibodies aren't being created yet, while too late into the illness the immune system is no longer making antibodies. ELISA is not a true screening test because it's not proficient or sensitive enough to detect Borrelia burgdorferi. We use the Western blot testing method at the Jemsek Clinic because it looks for more unique and specific antigens.

Q. Can you explain a little more about what the ELISA and Western blot are screening for?
A. Both tests indirectly detect infection by detecting antibodies in the blood serum. The presence of an antibody doesn't always mean an active infection is present, but it does indicate exposure to the infectious agent. The absence of antibodies doesn't necessarily mean that there is no active infection. Our bodies make antibodies in response to foreign attackers like infection. The first antibody created is usually immunoglobulin type M or IgM. It takes about four weeks to make IgM in quantities large enough to be measured. The antibodies typically stay in circulation for about six months and then the detectable levels decline. If the infection persists and the IgM levels remain detectable, the Lyme patient is chronically ill. The second, more potent antibody is the IgG, which is made after IgM. IgG takes four to eight weeks to form, and peaks at about six weeks. Because the two antibodies are different, there are two separate tests to detect their presence. When testing patients, physicians should specifically order either the IgM or IgG ELISA or Western blot.

Q. What other illnesses do you see in chronic Lyme patients?
A. A disruptive, chaos-causing chronic infection like Lyme may be harboring other diseases. In addition to the obvious overlap with CFIDS and FM, we see many disease associated with chronic Lyme. We find celiac disease up to 10 percent of the time, but it's only supposed to be present in 1 percent of the population. We've seen thyroid nodules, thyroid disease, dysmenorrhea, atypical ALS, atypical MS, Crohn's disease, the list just goes on and on. There are also co-infections caused by microorganisms in the deer ticks that carry Lyme bacteria. Studies have shown that co-infections like ehrlichiosis, babesiosis, bartonella and Rocky Mountain spotted fever can be present with more severe symptoms and can be more difficult to treat than Borrelia.

Q. When should people diagnosed with CFIDS be tested for chronic Lyme?
A. When the NIH finally took Lyme disease seriously, they developed criteria and we had a symptom complex we could follow. At that time patients either had Lyme disease or they didn't. However, the three major symptom categories of chronic Lyme that overlap with CFIDS - cognitive dysfunction, central nervous system irritability and fatigue - make it hard to tell he difference between the two illnesses especially if there's no tick-associated rash. But if PWCs have any neurological symptoms that are otherwise unexplained, they should be tested for Lyme bacteria without question.

Q. Aside from lab tests, how can you screen a CFIDS patient for chronic Lyme?
A. Since there aren't any particular signs of chronic Lyme, we sit down and talk to the patient. During that conversation we might find that a PWC had a tic or tremor or shooting pain that he or she didn't tell anybody about before, indicating an unexplainable neurological symptom. At that point we'd test for Lyme bacteria. If the test is positive, the patient's response to antibiotics becomes critical. If we prescribe antibiotics and the patient has some sort of unexpected bizarre effect or intensification of symptoms, or if new symptoms develop, then we try different treatment regimens until we find one that works.

Q. Is long-term treatment of chronic Lyme really effective?

A. We know that treatment is controversial, but in targeting Borrelia burgdorferi we tend to have pretty good clinical success in the vast majority of patients. There's an art to treating a patient and to letting that patient's body detoxify, so we attempt to craft a rational antibody program that often requires different combinations and sequences of medications over a period of time. Because chronic Lyme is a complex multisystemic disease, issues of pain and sleep also have to be addressed in addition to the bacterial infection. Typically, after a few weeks of treatment, a patient's cognition is improved and a lot of the neurological symptoms will improve. Fatigue is probably the last symptom to turn around. Two studies have indicated that longer-term antibiotics make no difference in treating CFIDS patients. It's my feeling that you can't base treatment of serious morbid illnesses like CFIDS or chronic Lyme on one or two studies.

Q. What happens when you get the patient that no one has been able to diagnose?

A. Other doctors will say, "We don't know what it is, but we know it's not chronic Lyme." And sometimes they're right. We don't always have an immediate answer, but because we see so many other illnesses related to Borrelia bacteria, we assume it is imbedded in the nervous system and playing a role in their illness at some level.

Q. There was a vaccine for Lyme disease at one time, but it was taken off the market. What happened?
A. The vaccine was called Lymerix, and it was a colossal disaster. Basically, the vaccine itself was making people sick by triggering treatment-resistant Lyme arthritis and other chronic arthritic disorders. Further study into the case found that about 30 percent of the population carries a gene that might develop this autoimmune arthritic disease if given the vaccine. The drug's makers created the vaccine without understanding the basic physiology of the organism in the tick versus the human in terms of changing its surface antigens. They didn't recognize that Borrelia could be an asymptomatic imbedded infection. I think it'll be a long time before we have another vaccine.

Q. Why don't clinicians know more about chronic Lyme?
A. Many clinicians believe that chronic Lyme is easily cured and therefore don't take the disease seriously. It's mostly a matter of having the scientific evidence to prove to clinicians that chronic Lyme exists, and unfortunately we don't have that right now. We're at a primitive state as far as the clinical science is concerned. In the past year there's been an upturn in basic science reporting about chronic Lyme in both the United States and Europe, so interest in this illness is growing.

Q. Some people believe chronic Lyme and CFIDS are sexually transmitted. What do you tell your patients?
A. I know that Borrelia is a clever organism that's a member of the syphilis family. When people ask me, I have to tell them I don't know if these illnesses are sexually transmitted or not. There's no research to support either school of thought. I just advise people to take precautionary measures.

Q. Why is there such controversy over chronic Lyme?
A. That's not an easy question to answer. Doctors have to rely on the literature available to them, and unfortunately that literature is full of antiquated ideas. Therefore, some physicians tend to trivialise or deny its existence. The biggest disparity in opinion is between those in academic medicine and the doctors who actually treat chronic Lyme patients. The academicians believe that the most debilitating chronic Lyme, often referred to as neuroborreliosis, is hard to catch, over-diagnosed and easily cured in a few weeks. Treating physicians know that treatment protocol for chronic Lyme can last for months, and they very seldom refer to a patient as cured because relapse is always a possibility. HIV has a $2 billion research budget and millions of published articles, yet everything we know about it changes every few months. So how can we as clinicians be dogmatic about the existence and treatment of another serious chronic illness?

Q. Where does the burden fall for research into chronic Lyme diagnosis and treatment?

A. We have to get the scientists involved and excited about chronic Lyme. The responsibility for research doesn't fall into one particular category. Our situation with chronic Lyme and CFIDS is similar to the situation with HIV in the 1980s in terms of funding and research. There are thousands of diseases to learn about, and right now chronic Lyme and CFIDS just aren't at the top of the list. I think it'll be another 5 to 10 years before that happens. I do believe that if we learn more about chronic Lyme and the cause of CFIDS we're going to unlock the key to a lot of chronic illnesses.

(interview ends)


Dr. Joseph Jemsek is the founder of the Jemsek Clinic. Prior to opening the Jemsek Clinic, he practiced infectious disease and internal medicine for 21 years at the Nalle Clinic in Charlotte. He is board certified in both internal medicine and infectious disease. His special interests include HIV/AIDS, persistent Lyme disease or chronic neuroborreliosis, chronic fatigue syndrome, fibromyalgia, chronic sinusitis and general internal medicine. Visit his website at www. jemsekclinic. com.

Sidebar: Did You Know?

* Lyme disease is named for Lyme, Connecticut, where a cluster of cases occurred in the early 1970s. Today it is acknowledged as the most common vector-borne disease in the United States.

* Lyme disease is transmitted by tiny deer ticks that are infected by a bacterium, or spirochete. A tick on the skin does not automatically mean you have an infection. Common sites for ticks are warm and moist areas, such as the genital area, behind the knees and on the neck.

* Research shows that an infected tick usually has to be attached to your skin for at least two days to transmit Lyme bacteria, but some clinicians believe it can be transmitted in as little as five hours.

* If you have a bull's eye rash around the area of a tick bite, you most likely have Lyme disease, which may or may not become chronic. However, the rash is absent in at least 25 - 35 percent of people who become infected.

* Lyme disease can result in crushing fatigue and can affect the nervous system, causing severe headaches, pain or weakness in the limbs and poor muscle movement. These symptoms overlap with CFIDS, further complicating diagnosis of both illnesses.

Thursday, September 15, 2005

Vineyard Epidemic: Lyme Disease on the Rise: Health Experts Track Cases

Martha's Vineyard Gazette - Edgartown,MA,USA

The Martha's Vineyard Hospital reports a large increase in Lyme disease cases this summer - over double the number seen last year - fueling concerns about what many public health experts say is now an epidemic of the disease carried by tiny deer ticks.

Donna Enos, infections control nurse at the hospital, said case reports submitted by emergency room and primary care physicians show a sharp increase in Lyme disease over last year's numbers, with 40 cases in June, 110 in July and 105 in August. Mrs. Enos predicts September will show an increase as well due to warm weather.

"September is looking very high too; let's not forget the temperature out there, it's like August all over," she said.

The numbers reflect diagnosis by hospital doctors. Final confirmation will come through the Massachusetts Department of Public Health (DPH), a process that takes several months.

Surrounded by a sheaf of case reports for the summer, Mrs. Enos spoke from her office this week about the incidence of tick-borne illness on the Island.

"This year is significantly greater than years past on what I'm reporting right now, but the final word will come from the DPH," she said.

Each case of Lyme disease diagnosed in the hospital is documented using a reporting form from the state DPH. Mrs. Enos said the process is lengthy and final numbers will not be available until winter. Every case submitted by the hospital must meet a strict set of criteria to qualify as a confirmed Lyme disease case. Some Lyme disease cases seen on the Island may not be reported, including cases involving visitors who contract the disease and return to their home state for treatment.

In short, the actual number of cases may be higher than reported.

Dr. Frederic Cantor, a public health veterinarian for the DPH, agreed the numbers may not reflect the complete number of Lyme disease cases seen on the Island, but he said guidelines are necessary when comparing the number to state and national totals.

"For our statistical, yearly evaluation, we need to make sure we're talking about the same thing year to year," Dr. Cantor said, "There may be some cases that we cannot capture that are clearly [Lyme disease] but without the recording and information they get put into different categories."

While the final tally is not yet available, Dr. Cantor agrees that there has been an increase in Lyme disease cases this year, along with other tick borne illnesses. Already, the DPH has confirmed eight cases of tularemia on the Island this year and is investigating four more. While rare in other parts of the nation, tularemia seems to flourish on the Island, with 37 confirmed cases seen since 2000.

The Health Report of Martha's Vineyard, a comprehensive study of health issues in the adult population on the Island done in 2002 and 2003, found epidemic levels of Lyme disease. A draft final report completed late last year found one in five full-time residents reported having a tick borne illness, and 12 per cent reported having had Lyme disease. Seven per cent of part-time residents also reported having either been diagnosed or treated for Lyme disease.

The rate of Lyme disease was even higher for up-Island residents.

Dr. Cantor and Mrs. Enos both said the increased numbers this year can at least partly be attributed to better reporting by Island doctors.

Mrs. Enos said emergency room doctors at the Island hospital have quickly become experts at recognizing Lyme disease and other tick borne illnesses.

"I don't think [the increase] is because there are more ticks, but more awareness," Mrs. Enos said.

But Dr. Cantor and Mrs. Enos also believe weather is a factor. Mrs. Enos said a wet winter coupled with a warm, dry summer means more people venturing into areas where they are exposed to ticks, including woodlands and beaches.

Dr. Cantor agreed.

"I think it's a combination of things. It's not just the increased vigilance at the hospital because we've had that since 2000," he said, adding: "I think the weather again is warmer and lasting longer, so there are going to be more exposures. We see that for a lot of diseases, like rabies - if it's something that's weather dependent it means people either have to go out there and be exposed or that the bugs aren't there."

Dr. Bela Matyas, medical director of epidemiological studies for the DPH, said the large deer population on the Island give deer ticks an ideal breeding ground. Deer ticks, which carry Lyme disease, use large mammals such as deer to lay eggs.

"You have the perfect ecology for [Lyme disease] and animals that are important in the cycle that transmit it - the only natural predators on the Island [for deer] are automobiles and there are no other predators that keep the process in check," he said.

Dr. Matyas said studies have shown that reducing a deer population has a direct correlation on the number of deer ticks. One female deer tick can lay between 2,000 and 3,000 eggs and one animal can support dozens of ticks. A task force formed earlier this spring began to examine the question of reducing the deer population, including extending the hunting shotgun season from one week to two weeks. The Island is the only region in the commonwealth with a one-week shotgun season.

Five years ago Nantucket added a third week to shotgun season for deer, and lowered the deer population by an additional 200. But the additional hunting saw vocal opposition from some residents, and Nantucket selectman have since opted to return to a two-week season.

Health experts say prevention is still the best cure. Mrs. Enos recommends people take all necessary precautions to prevent tick bites, such as tucking pants into socks, wearing light colored clothing so ticks are easier to spot and applying tick repellents with a concentration of DEET no greater than 30 per cent. If a tick is found, Mrs. Enos advises slow and careful removal, using tweezers or special removal tools like the Pro Tick Remedy - small, precession tweezers designed for tick removal and available at the hospital. She also reminded people to thoroughly wash the area where the tick was found, as well as the hands after removal. Avoid crushing ticks with bare hands or touching the face or mouth before washing hands, Mrs. Enos said.

Fast action is also important when symptoms appear. Mrs. Enos said anyone who experiences symptoms associated with Lyme disease such as headache, joint pain, fever or facial paralysis, should seek immediate medical attention.

Lyme disease is documentary film subject

Martha's Vineyard Times
By Nelson Sigelman

Andy Abrahams Wilson, a San Francisco based filmmaker, said he had never thought much about Lyme disease until his twin sister contracted the debilitating tick-borne disease and endured a long medical odyssey on her way to a diagnoses and treatment.

Mr. Wilson has now focused his attention and documentary skills on the subject of Lyme Disease in a film now under production titled, "Under Our Skin, The Lyme Disease Enigma." His research has led him to the conclusion that our health care system is not responding adequately to what he said is a silent epidemic.

From tomorrow through Sunday Mr. Wilson will be on Martha's Vineyard where he intends to interview people intimately familiar with the ravages of Lyme Disease.

Mr. Wilson said that when his sister, who lived in upstate New York, first complained about the effects of Lyme Disease he thought that she was just trying to get attention and simply tired. Then when a close friend in San Francisco became ill.

"None of the doctors could diagnose what was going on with her and she was just getting sicker and sicker," he said during a telephone interview from his office in California. "She was starting to have neurological problems. She would forget who she was and where she was."

He said the woman was finally diagnosed with Lyme after a number of misdiagnoses. It was that story that first attracted his attention.

"I am a film maker and what I do is really about trying to bring awareness to people and this was a fascinating untold story that I thought needed to be told," he said.

He has been working on the project for a year through a nonprofit corporation set up to produce the film which he expects will be broadcast on a national network like PBS or HBO. The working title is "Under Our Skin."

His Vineyard stop is part of a production trip to the northeast that will begin in Boston and finish in New Jersey. The fact that he has a friend who lives on the Vineyard and an abundance of ticks and people with stories to tell about tick-borne diseases made the Island a natural place to visit.

Mr. Wilson said one of the Vineyarders has already spoken to is Sam Feldman of Chilmark, one of the leaders of the tick task force, an ad hoc group of Island residents concerned about finding ways to reduce the spread of tick borne diseases.

Asked what he has learned over the course of his production research, Mr. Wilson said, "I think that this is such a rampant disease and that people are not getting diagnosed or treated."

One of current controversy that exists is whether there is such a condition as chronic Lyme Disease, which needs to be treated aggressively, usually through a long-term course of antibiotics.

"No matter what the controversy is, people are very sick and people are not aware of modes of transmission and people are losing their livelihoods," said Mr. Wilson. "I see it as a very big crisis, something that to me that in the past seemed like it was just a minor condition to something that is really a public health threat of the greatest magnitude."

And why would seemingly responsible physicians and research scientists not see this as a crisis? "That is one of the questions we are asking in the film," said Mr. Wilson. "And I can't give you an answer for that."

Mr. Wilson said that one of the biggest problems is that many physicians do not have the information they need and are not aware of the magnitude of the problem. He said by most accounts information provided by the federal Centers for Disease Control is inadequate and out of date.

"There is so little peer reviewed information, communication between people working in the field that there is this great chasm between people working with Lyme patients on a regular basis and physicians who just every now and then will get a Lyme patient, or might get a Lyme patient and not know it."

As an example, he said his co-producer and her husband both returned from a trip to the Vineyard with cases of Lyme Disease. "And the doctors at Stanford basically diagnosed them with Silicon Valley stress syndrome," he said. "They've been sick and on their journey of recovery for some time now, but they were fired by their physicians who said there is no Lyme Disease in California."

He said that while people may be more aware of Lyme in places like the Vineyard the disease has become a national problem. The focus needs to be on finding a way to diagnose the disease or people will continue to be sick the rest of their lives he said.

Mr. Wilson said he is currently engaged in research for his film, fund raising to pay for its costs and the actual production. He said the Vineyard trip would provide an opportunity to do some of all three of those things.

"Because of the Vineyard's nature as an endemic area it seem like a natural place to be," he said.

According to his company website, www.openeyepictures.com, in 1994 Mr. Wilson founded Open Eye Pictures, an award-winning production company specializing in creative non-fiction and commercial media. He said the current project was set up as a nonprofit venture because the market is limited and there is little likelihood of profit.

"In a lot of ways it is a labor of love," he said. "I get to do something that I am passionate about, that I believe in, and that I think might help change the world. The downside is that there is no market for that."

People interested in contacting Mr. Wilson to speak about their experience with Lyme Disease may contact him through his office at 415-332-3266.

Tuesday, September 13, 2005

Health spiraled downward before disease diagnosed

For an outsider looking in, a lot of days could have seemed like rock bottom for the Endorf family.

But one incident stands out in particular for Charlotte and Kevin Endorf of Norfolk.

Their 15-year-old daughter Sarah had been sick.

She got strep throat in March 2004. The doctor prescribed 10 days' worth of antibiotic. She didn't get better.

Her health worsened to mononucleosis-type symptoms - sleeping 20 hours a day where previously Sarah had been a light sleeper, Charlotte Endorf said.

But she tested negative for mono.

"Six doctors in Nebraska looked at her, scratched their heads and said, 'I have no clue what's wrong with your daughter.' Meanwhile, she's withering away before our eyes," Endorf said.

At that time, Sarah had dropped to 85 pounds, started to hallucinate and experience extreme pain.

But the Endorfs didn't really hit rock bottom until they traveled to Missouri to visit a doctor there.

At that time, Sarah had to be off of all of her medications in order to be tested again.

The family had just sat down to eat at a restaurant.

"She (Sarah) looked at the menu and looked at us and said, 'What's shrimp?' We looked at each other and looked at her and said, 'What do you mean, what's shrimp?'

"Tears were running down her face, and she said, 'I'm not kidding. I don't know what shrimp is.' We knew then, we had a problem," Endorf said.

"And then, we said, 'Well, we've eaten shrimp all of Lent. Your brother likes shrimp and you like shrimp.' And then she said, 'I have a brother?' . . . And Kevin and I both lost it, and we started crying."

Short-term memory loss was part of what Sarah was experiencing. That made sense after she finally was correctly diagnosed with Lyme disease.

Lyme disease is an illness caused by spirochete bacteria. The illness is transmitted to animals and man through the bite of infected ticks.

As part of the disease, Sarah has experienced numbness and tingling, severe pain, fatigue, depression and extreme eye sensitivity.

Since her diagnosis, she has been treated successfully with new medications, but she still has a few problems with her short-term memory.

Sarah was able to keep up with her schoolwork via online classes from the Norfolk Public Schools through the University of Nebraska-Lincoln. This year, she is a high school sophomore, and she started when all of the other students did.

Monday, September 12, 2005

Lyme disease can strike anywhere

After 50 years together, Nancy Lenoce, 69, could tell something was terribly wrong when her husband, Alton "Al" Lenoce, 73, began to experience mysterious but troubling medical symptoms.

However, it would take almost a full year of sleuthing before he received a diagnosis of Lyme disease.

Now Al is recovering form a harrowing experience he wishes no one else should have to repeat.

He first became aware of unusual symptoms when he woke up one morning and found he had no voice.

He referred to this as, "most unusual for me," and said it started a long chain of events that included consultations with six specialists within 12 months.

He underwent countless tests, blood work and visits to specialists, and his health progressively deteriorated, before doctors finally discovered what was wrong.

Al said the reason he saw so many different kinds of doctors was that no one had any idea what was wrong with him, and the longer his illness progressed, the worse his symptoms became.

A cardiologist, urologists and neurologist were among the many doctors who ordered tests, MRI's and blood work, all of which proved inconclusive.

Meanwhile, Al said pain was the worst of his symptoms. It often was often so severe that he was unable to move and could only scream out in agony.

"I'm a combat veteran of the Korean war," he said. "I know what pain is like. It was very, very intense."

In addition to the extreme pain and loss of his voice, Al said his memory was suffering.

Nancy said Al's memory got so bad there were times where the two of them would be on the way to a doctors' appointment, and Nancy would tell her husband who they were going to see. Only a few minutes later, he would ask her, "Where are we going?"

At one of their appointments at the Veteran's Medical Center in West Haven, the doctor recommended they visit an ear, nose and throat specialist. Heeding this advice, the Lenoces did just that, and learned that 40 percent of Al's left vocal chord had been destroyed by some kind of infection.

Nancy said this was the first time her husband's condition had been referred to as, "damage done by an unknown infection," and that he was tested for Lyme disease at this time.

"We are avid gardeners and for years have been conscious and aware of Lyme disease," Nancy said.

She said the two habitually check each other for ticks after spending time in the garden, and wear long pants and light colored clothes in an effort to protect themselves.

Al's Lyme test came back negative, and the Lenoces would later learn that it takes a while for tests like these to come back positive, which explains the results at that time.

By mid-June, Al's condition had gotten so bad (and was still undiagnosed), that he was confined to the house. In the middle of June, the Lenoces opened their gardens to the public as they usually do, but Al was in too much pain to go outside.

His memory loss and pain were at an all time high, and he was suffering from tremors so bad that at one point, they thought he might have Parkinson's disease. On top of all of that, he had dropped almost 30 pounds, unable to eat much of anything.

"I could not/would not eat, because everything I put in my stomach would cause me pain," he recalls.

In July, the two returned to the Veteran's Medical Center, where a doctor looked at Al's blood work, calling it, "basically, a disaster."

Apparently, Al was suffering from ultra-low levels of sodium and electrolytes (due to the fact that he had been eating next to nothing), and there was too much water in his system. He remembers a doctor saying he was in a "near fatal condition," a term he is not soon to forget.

"When a doctor you know and respect says that, it gets your attention," he said.

All of the doctors' attention had now focused on the sodium deficiency, and Lenoce was immediately attached to a sodium intravenous drip, which he stayed hooked up for most of the afternoon.

The doctors recommended that he eat as many high fat and high sodium foods as possible, and he and Nancy recall going to McDonald's every other day, ordering chocolate milkshakes, something that was unusual for the usually health-conscious couple.

A week later, the Lenoces returned to the Veteran's Medical Center for a check up, where the doctor mentioned the possibility of Lyme disease. Later that day, the neurologist called Al at home and confirmed the diagnosis, strongly urging him to go to a leading Lyme disease treatment center in Stratford.

That same day, he had a catheter implanted next to his heart, which would allow for the influx of ceftriaxone, an antibiotic he refers to as, "the gold standard for Lyme disease treatment."

The following morning, his 30-day treatment cycle began. He said these treatments usually last a half hour or so, with a nurse administering the drug.

After the 30-day cycle, doctors will review his blood work and symptoms. Depending on these factors, doctors will decide whether Al will go through another treatment cycle.

"I turned a corner two, maybe three nights ago," he said. "I turned to Nancy and said 'Honey, I think I'm starting to feel a little bit better.'"

He has begun eating a little bit more and stopped experiencing tremors. He is hopeful for the future but aware he doesn't yet know what permanent damage this past year has done to his other organs.

Both Al and Nancy are passionate in their belief that there needs to be a sense of awareness and concern about the dangers of Lyme disease.

"The state of Connecticut should make it mandatory that every person who is having blood work should be tested for Lyme disease," he said, adding that, "this is a very complex problem."

As for the ways the illness has changed his life, he said he was frustrated about the damper it has put on his physical and creative outlets.

He is especially disappointed over the fact that he lost his opportunity to win big on "Who Wants To Be A Millionaire."

He explained that he had first auditioned a while back and had made it to the next round but was unable to attend last week's audition due to his treatments.

Nancy joked that Al still wanted to attend, but there would have been no way he could have made it all the way into the city by train, even with her standing beside him.

Like they have for the last 50 years, the Lenoces have worked as a team through a very trying year and will remain so as Al continues on his road to recovery and back to his beloved garden.

Friday, September 09, 2005

Lyme disease cases rising

Cases of Lyme disease, a tick-borne bacterial infection, have increased in a big way throughout Metrowest this summer, according to local health officials.

"It's unbelievable," said Metrowest Medical Center's infectious disease clinic chief, Dr. Thomas Treadwell. "There's been days when I've seen five or six cases a day."

Treadwell has not done a firm count, but said he has treated several dozen cases of the tick-borne infection, about two or three times more than last summer.

The danger areas appear to be in Southborough, Callahan State Park in Framingham and areas along the Charles River, Treadwell said. Medfield has acres of wooded areas along the Charles River, perfect living conditions for ticks that love the tall grasses and dense greenery found along rivers. The disease's prevalence may be related to infection rates in rodents, since deer ticks contract the disease from rodents, such as field mice, before passing it on to humans, Treadwell said.

Statewide, Lyme disease cases appear to be about the same as last year, though some areas are experiencing high infection rates, said Dr. Bela Matyas, medical director of the state Department of Public Health's epidemiology program.

"There are different pockets that have been reporting a little bit more, some reporting a little bit less," Matyas said.

Dr. Rahul Sawant, a Franklin internist who is on staff at Milford Regional Medical Center, said he treats between five and 10 people with Lyme disease per month. But this year is not any worse than last, he said. Marlborough Hospital also has not noticed any sizable increase in Lyme disease this year, a spokesman there said.

"This is the time of year when Lyme disease is very common," Sawant said.

Cape Cod and the islands are usually among the hardest hit by Lyme disease, Matyas said. Health-care providers are required to report cases to the DPH, but good statistics will not be available until December, because Lyme disease usually isn't reported immediately, he said.

Reported Lyme disease cases increased dramatically beginning in the late 1990s before stabilizing the last couple of years, he said. About 1,500 to 1,700 cases are documented by the DPH in Massachusetts each year, but it is an underreported disease, so the true number is likely much higher, he said.

In suburban areas, Matyas said, a resurgent population of deer - which provide an important food source for deer ticks - over the last decade has helped make Lyme disease more common.

Lyme disease is usually a "fairly trivial" infection that responds well to treatment, Treadwell said. The typical symptoms are a fever, rash and headache, but it is also associated with more serious complications, including arthritis and facial paralysis, he said.

"It can be a severe disease, but most of the time it's not," Treadwell said. "There's a lot of misinformation, and I think people get frightened by that."

Treadwell recommended using bug spray and keeping feet covered when outdoors, and checking your body for deer ticks after being outside. The ticks, which are very small, like to feed on dark, warm areas such as behind the knee or in the groin or armpit, he said.

For more information on Lyme disease, log onto www.mass.gov/dph and search for Lyme disease in the "health topic index."Jon Brodkin can be reached at jbrodkin@cnc.com.

Thursday, September 08, 2005

Tick bites can have many infections

Poughkeepsie Journal
Are tick-borne diseases the new AIDS epidemic? Government latency has allowed these diseases to spread throughout the country, potentially sparking the next pandemic. And shame on our state legislators who pale in the wake of our Connecticut neighbors in addressing the problem first and foremost, while the Hudson Valley may become the No. 1 source of infections. If there were less politicization, we may have stopped this from becoming a bigger problem.

Ticks and other arthropods can transmit bartonella, tularemia, tick paralysis, Rocky Mountain Fever, Powassan Encephalitis, Q-Fever, Tick Relapsing Fever, Colorado Tick Fever, ehrlichiosis, babesiosis and Lyme disease. The list is probably longer and includes mutations. I'd like to see a show of hands: How many tick bite victims were tested for other infections?

When the tests are not 100 percent accurate, it's time for the Centers for Disease Control to do its job, and take leadership of this growing problem before more acute victims become chronic. Most local doctors are still clueless on diagnosis and treatment. So many I know are being misdiagnosed with MS, arthritis, fibromyalgia, chronic fatigue, heart attack, depression and sleep disorders.

It's time to fight back, especially in the mid-Hudson Valley. Call your elected representatives and encourage action, because if you are lucky enough not to know someone that has had a tick born disease, you won't be soon.

Steve Ascenzo, Poughkeepsie

Friday, September 02, 2005

Educating Californians on Lyme disease

San Francisco Chronicle - United States
Six years ago, Tony Pennisi marked his 40th birthday with a life- affirming hike up Mount St. Helena through Robert Louis Stevenson State Park in Napa. Back home in Calistoga, he discovered an enlarged tick on his hip encircled by a red ring. Pennisi, a professional forager and savvy outdoorsman, suspected it to be a Lyme tick.

He immediately went to his doctor who, Pennisi says, was skeptical about the existence of Lyme disease. Pennisi insisted on being given a blood test.

"By the time I got the results back eight weeks later that I had Lyme, I was a wreck," he said. Pennisi, who now lives in Vallejo, became extremely light-sensitive, taping newspapers over the windows. He couldn't go outside without sunglasses. Besides great fatigue, he became irritable, had night sweats, lost weight faster than he could eat and slurred his speech.

While antibiotics have helped him almost fully recover, Pennisi recently relapsed.

"I actually fell asleep in the office while listening to the messages on the phone," he said.

Lyme disease has popularly been seen as a regional illness afflicting the Northeast and upper Midwest. Because of the experiences of people like Pennisi, however, an increasing number of local activists are trying to alter that perception. A pamphlet released by the California Department of Health Services says that western black-legged ticks infected with the Borrelia burgdorferi bacteria, which causes Lyme, have been found in 41 of the state's 58 counties.

"I wish I had a nickel for every time I've heard that Lyme disease doesn't exist in California," said Dr. Raphael Stricker, a San Francisco physician who specializes in treating patients with the disease. "We are seeing a lot more patients from around here -- especially from Northern California in Mendocino and the northern counties."

Stricker, who is also president-elect of the International Lyme and Associated Diseases Society, recently closed his practice to new patients because of heavy demand.

The disease is transmitted when an infected tick the size of a poppy seed passes a bacterial spirochete (a spirally, undulating bacterium) into the human host it bites. Roughly half the time, a bull's-eye ring will appear around the bite, signaling infection. The initial symptoms can include fatigue, fever, joint aches and sleeplessness. While nonfatal, if gone untreated, the bacteria can greatly affect the immune system and even enter the brain.

Because Lyme's effects on the body often mimic chronic fatigue syndrome, Lou Gehrig's disease or multiple sclerosis, the disease has been called "the great imitator" for its propensity to be misdiagnosed.

Ken Broad, 39, a portfolio manager for an investment company in San Francisco, knows this all too well. After contracting the disease on vacation in Cape Cod, the Mill Valley resident came home when symptoms such as brain fog, muscle twitching, facial numbness, vertigo, depression and chest pains started to accumulate.

When visits to 15 doctors, including neurologists, cardiologists, specialists in internal medicine and genetic counseling, failed to alleviate his various ailments, a frustrated Broad conducted an Internet search linking such symptoms as brain fog and muscle twitches together. This led him to a paper by a doctor that described all his symptoms as indicative of late-stage Lyme disease. Broad flew to Boston to visit the doctor who prescribed the antibiotic Tetracycline -- and later Biaxin and Plaquenil -- that have helped him now feel 95 percent normal.

"The last step was being diagnosed by a psychiatrist for happy pills (for depression)," Broad said. "How many people my age have to become completely debilitated until you get attention? I literally thought I was dying." He wrote a will and made plans for his wife's parents to move in to help raise his two daughters.

Broad now spends much of his free time advocating for education about the disease, starting the Web site www.lyme-advocate.info. He's also involved with the California Lyme Disease Association.

The peak time for contracting the disease is between April and June when the nymph ticks -- one stage of growth before an adult -- are active.

"I can't emphasize enough how easily overlooked these ticks are," said Bob Lane, a professor of medical entomology at UC Berkeley, who has studied tick-borne diseases for more than 30 years. In field studies in the oak woodlands of Mendocino County, Lane found infection rates for ticks with Borrelia burgdorferi from 5 to 15 percent for nymph ticks and 1 to 3 percent of adult ticks with a few areas approaching 40 percent for nymphs.

"The transmission cycles in the Northeast and Midwest are very different than out here," Lane said. In his studies, Lane found that the people at greatest risk for contracting the disease were those who had direct contact with wood -- including sitting against a tree or on a log, or gathering wood.

Ron Keith, an assistant manager for the Marin/Sonoma Mosquito and Vector Control District, said in an e-mail interview that western black-legged ticks have been found in just about every park or recreation area in the North Bay, including Point Reyes National Seashore, Golden Gate National Recreation Area, as well as China Camp and Samuel P. Taylor state parks in Marin County, and Armstrong Redwoods State Reserve and Sugarloaf Ridge and Annandel state parks in Sonoma County. Keith contracted the disease mountain biking at Annandel. While he still suffers from peripheral nerve damage and a tingling sensation, he said he is starting to feel better after three long-term regimens of antibiotics.

The best way to avoid tick bites is to wear long sleeves and pants, apply insect repellent and remove any ticks on yourself with tweezers.

"Relevant to the threat level, people barely know about it," Broad said. "The reality is if it goes misdiagnosed it becomes a much bigger problem."

Thursday, September 01, 2005

Daryl Hall postpones New Hampshire concert

Boston Globe - United States
Daryl Hall, who was diagnosed with lyme disease earlier this year, has postponed a Labor Day weekend concert with John Oates.

The duo postponed Saturday's concert at the Meadowbrook Musical Arts Center until next season. Hall needs to spend a few days at home recuperating, "due to his ongoing battle with lyme disease," a news release from the center said Thursday. The duo apologized to fans.

Hall and Oates plan to return to the road after Labor Day weekend, the center said. However, their Web site still showed them as scheduled to perform on Labor Day in Canada.

Lyme disease, caused by the bite of infected deer ticks, can cause arthritis, neurological problems and ecephalitis.

Hall and Oates had postponed some shows in July. Hall, 55, had been recovering at his home in upstate New York.

The duo are known for their 1980s hits including "Maneater," "I Can't Go for That (No Can Do)" and "Kiss on My List."

They have been touring in support of their latest album, "Our Kind of Soul."

The son she always knew

Palm Beach Post - Palm Beach,FL,USA
The fog surrounding Wyatt Sexton is lifting.

His mother, Joy, can see her son stepping out of the mist and into plain view a little more every day.

"I have the son that I know back," Joy Sexton said. "A little tired, but..."

Her voice trembles. For a time, an illness she knew nothing about — Lyme disease — transformed her oldest son from a straight-A student and a promising junior quarterback at Florida State into a listless, unpredictable person who ended up in a hospital two months ago after a confrontation with police.

Today, Wyatt Sexton is recovering from the symptoms of the illness, even if his doctors say the disease itself may never go away.

He's going to class again, albeit part time. He's gaining weight, despite a strict diet. He's even back in team meetings with the other Florida State quarterbacks.

Although Sexton is not ready to talk about his progress, his mother said he is determined to return next season to compete for the starting quarterback job, a position he likely would have had for Monday night's season opener against Miami.

"He never stopped believing. That's his dream," Joy Sexton said Wednesday.

Fatigue is Wyatt Sexton's greatest enemy.

Even after a full night's sleep, Sexton has trouble getting out of bed. That's one of the disease's curses, a restless sleep that leaves the patient perpetually tired.

"He doesn't want to get out of bed, like most 20-year-olds," his mother joked.

Disease attacks in many ways

Most mornings, a nurse comes to the Sexton's home to check the dressing on his right arm, where a catheter that snakes into his chest delivers antibiotics. On the days when the nurse doesn't come, Joy attaches her son's IV bag.

The antibiotics are used to subdue the bacteria that causes Lyme disease, which is transmitted through the bite of an infected deer tick. The Sextons are not sure where Wyatt might have been exposed to the tick.

The disease attacks and weakens the immune system. Before Sexton began his treatment, his mother said, his immune system was as weak as a cancer patient's.

Sexton already was having enough problems maintaining weight. Like his father, Billy, the assistant head coach and running backs coach at FSU, he's lanky and lean. Wyatt entered Tallahassee's Leon High School as a 5-foot-7, 130-pound freshman and he was 6-3, 190 as a senior. With the Seminoles, he struggled to stay at a playing weight of about 215 pounds, and he's trying now to stay above 200.

"There's a lot of strength to build back," Joy Sexton said.

Sexton has to be deliberate about meals. His disease mandates a strict diet low in sugar and starch, like a diabetes patient, Joy said, and he takes nutritional supplements. Since Wyatt's illness, the entire family has been more conscious of what they eat and have become "completely organic. Almost vegan," Joy said.

In the morning, Sexton usually studies for a while. He is taking six credits this semester, a big step since his specialist in Pennsylvania — he has three doctors in Tallahassee — initially said that load might be too much.

After all, Lyme disease affects the ability to concentrate. In its late stages, as Sexton learned, it can impair judgment the way alcohol or a narcotic might. "Brain fog," Joy called it.

Friends and FSU coaches said Sexton was acting strangely as early as April. He was cutting classes. He suddenly had failing grades. Teammates found him distracted at practice and in meetings.

Suspicious, his coaches told him to take a drug test, but Sexton didn't show up and he was suspended.

"His attention wasn't focused on football, wasn't focused on the things he needed to be doing," said running back Leon Washington, who has been a close friend of Sexton's since they played together in the Florida-Georgia high school all-star game in 2002 before arriving at FSU.

"That disease, it plays tricks with your mind."

Hospitalization, surprise diagnosis

During the late afternoon of June 13, police were called to a neighborhood where Sexton was doing push-ups in the street and later lying face down on the pavement. He resisted arrest, telling officers that he was "God.''

Police used pepper spray to control him before they took him to the hospital, according to the police report. He was committed under the Baker Act because he seemed to be a danger to himself or others, the officer wrote.

"I don't consider that him," coach Bobby Bowden said. "That was a reaction to the disease."

Washington had talked to Wyatt the weekend before the incident and found him agitated.

"He was talking about some crazy things — I won't tell you what he said," Washington said. "He was out of it."

His parents sat with him at the hospital, waiting for a diagnosis, with Sexton often asking why he was in the hospital. Speculation swirled, with some media outlets suggesting a substance-abuse problem or psychological condition.

"We didn't know whether he would ever come out of it," said Joy Sexton, whose husband declined interview requests for this story.

It would take a week of worrying and wondering before doctors told the Sextons their son had contracted Lyme disease.

Joy said she suggested the disease to doctors after two Tallahassee residents contacted her and told her their children had Lyme and had exhibited similar behavior. A test confirmed it immediately and Sexton was started on an IV medication.

"We had our son back after a week on the IV," Joy said.

Friends there in Sextons' difficult time

Sexton has progressed so well that after class he attends the regular quarterback meetings. He often pops by practice or the locker room to joke with his teammates.

"Same ol' fun-loving Wyatt," safety Pat Watkins said.

Sexton has to nap when he gets home, giving him more energy for two activities he enjoys, playing the piano and guitar.

His parents also have found solace, and not just in seeing their son progress so quickly. The Sextons have had support from their church and Joy meets regularly with the Tallahassee branch of a Lyme disease support group, which has about 400 members, she said.

The Sextons are a longtime family in the state capital — players from three generations were quarterbacks at Leon — so they've also had plenty of community support, especially during the drug-abuse rumors.

"The local community understands who the Sextons are and what they stand for," said Leon High principal Rocky Hanna, a 1982 Leon graduate whose family has attended the school for four generations. "To others, they want the 'other side.' To us, there's the Sextons' side and that's the end of it."

Wyatt finds comfort in his dream of one day returning to play at Doak Campbell Stadium. Joy Sexton is happy just to see the life back in her son's eyes.

"If he doesn't improve anymore, that's OK," she said. "His mind is back."

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