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Monday, May 30, 2005

Alarm at sharp rise in tick disease

Times Online - UK
By Valerie Elliott, Countryside Editor

HEALTH experts are concerned at a sudden increase in the number of British cases of Lyme disease, an infection carried by ticks that can be fatal.

In Scotland the number of sufferers went up 35 per cent between 2003 to 2004. In England and Wales there were 97 cases 10 years ago and 320 in 2003. Specialists believe that the true incidence could run into thousands because people, doctors and vets do not know much about it and do not seek treatment.

Patricia Hewitt, the Health Secretary, is under pressure to raise public awareness of the disease and to ensure that GPs and medical students are taught about it.

Some believe that she should make it a notifiable disease in England and Wales, as it is in Scotland. British military personnel and their families already have to notify their medical service if they get it.

Anyone who goes to the countryside is at risk of infection. The disease can also be picked up in parkland where there are deer. City-dwellers who visit parks such as Richmond, Bushy or Victoria are at the same risk as a stalker in the Highlands or a visitor to a stately home.

British hotspots are Thetford forest in Norfolk, the New Forest in Hampshire, the Lake District, the Yorkshire Moors, the Scottish Highlands and the uplands of Wales.

But it is also widespread in the United States, Germany, Hungary and the Netherlands and exists on every other continent too. Between 10 and 20 per cent of British victims are thought to have contracted the disease abroad.

Many people may be carrying the antibody after a tick bite years ago, but showing no symptoms. In those cases the full-blown disease can be triggered by another illness or severe stress.

It causes a rash and stiffness in the joints and, left unchecked, it can affect the central nervous system, causing tingling in hands and feet, or facial palsy. In the worst cases the disease can also affect the heart, liver and spleen and even lead to encephalitis, which can kill. Depression and chronic fatigue grip many patients and ruins their lives.

The symptoms are not identical for every sufferer though — Lyme disease imitates other diseases, which makes it difficult to diagnose.

People should be alert for ticks attaching to the skin and remove them as quickly as possible.

In particular, it is necessary to take care if you are near cattle, sheep, deer, horses and even game birds and seabirds. They can be carried also on hedgehogs, mice and voles.

Dr Darrel Ho-Yen, a Lyme disease expert based in Inverness, spoke of his concern about the rise in the number of cases in this month’s edition of The Field magazine. He believes that the known number of proven cases should be multiplied by ten “to take account of wrongly-diagnosed cases, tests giving false results, sufferers who weren’t tested, people who are infected but not showing symptoms, failures to notify and infected individuals who don’t consult a doctor”.

He believes therefore that in a year in Scotland the numbers have gone up from 430 to 580. Applying his multiplier to England suggests that there are 3,200 cases today.

The Ramblers’ Association has issued urgent guidelines and a new leaflet has been sent to riding schools and trekking centres by the British Horse Society. The UK Lyme Disease Association will hold a special conference at Sheffield University next month.


- Lyme disease is caused by the bacterium Borrelia burgdorferi. It is also known as Lyme borreliosis and was named after a cluster of cases that occurred in Old Lyme, Connecticut, in the United States, in 1974

- People get infected after being bitten by hard-body ticks (Ixodes species) that have the disease. Ticks get it from birds and mammals carrying the bacterium in their blood

- The most common symptom is a rash called erythema migrans, though some patients have flu-like symptoms. This is treated with antibiotics such as doxycycline or amoxicillin

- Infection can lead to facial palsy, “viral type” meningitis and nerve inflammation that may lead to tingling in hands and feet, pain or clumsiness. Some people develop arthritic symptoms, which can settle with antibiotics, others experience persistent arthritis

- It may be a trigger for chronic fatigue syndrome (ME) or fibromyalgia, a post-infection syndrome

- There is no vaccine for Lyme disease

- Peak exposure in Britain is April to October

- Ticks are tiny spider-like creatures that cannot fly and are common in woodland, heathland and moorland. Unfed ticks are the size of a poppy seed but they blow up to the size of a grape pip when they have been feeding. Larvae are smaller than a pinhead

- The risk of infection from an infected tick is low if it is removed from the body within 24 hours of attachment

Concern as sheep-tick disease cases soar

Scotsman - Edinburgh,Scotland,UK

HUNDREDS of hillwalkers and rural workers have been struck down by disease caused by ticks, which attack humans as well as animals.

Health experts have warned of increases in cases of Lyme disease, with the real number thought to be much higher than those reported.

The Ramblers Association has issued safety guidance to its members and the Cairngorms National Park Authority is taking action to control ticks.

Dr Darrel Ho-Yen, a Lyme disease specialist based at Raigmore Hospital in Inverness, outlined his concerns about an increase in the disease in the latest edition of The Field.

He claims that the number of proven cases in Britain should be multiplied by ten to take account of "wrongly-diagnosed cases, tests giving false results, sufferers who weren't tested, people who are infected but not showing symptoms, failures to notify and infected individuals who don't consult a doctor".

Dr Ho-Yen believes, therefore, that in a year, the number of Scots infected with the disease has risen from 430 to 580.

In the UK, the micro-organism causing Lyme disease is carried by the sheep tick, the most common, which, despite its name, feeds on deer, livestock and other species such as grouse and hare.

Sufferers can get flu-like symptoms such as tiredness and aches, and more serious problems such as chronic arthritis.

Saturday, May 28, 2005

Lifting lid on Lyme disease

May. 28, 2005 12:00 AM
Arizona Republic - Phoenix, AZ, USA

Regarding a recent "How I Did It" article in the Health & Wellness section about Lyme disease:

This was an important breakthrough in the wall of silence that has surrounded Lyme disease in the Valley.

Although it is true that the epidemic is much worse in my previous hometown in Connecticut (the Wilton Bulletin in the summer of '03 reported that 54 percent of families in that town had Lyme!), the prevailing attitude in this medical community is that Lyme is non-existent here. That mindset prevents patients who develop the disease from getting the necessary early diagnosis for successful treatment.

Many Phoenix residents travel to areas where the disease is more common, and frequently do not develop the telltale symptoms until after they return home. Many never notice a tick bite, or the classical "bull's eye" rash that should lead to a month of treatment without even a blood test.

The onset of the second phase of the disease is very unpredictable, and has earned Lyme the nickname "the Great Imitator." The current guidelines for diagnosis and treatment suggest that every new onset of any neurological or psychiatric syndrome should raise the suspicion of Lyme as a cause or an aggravating factor, but neurologists and psychiatrists here don't consider it. The cases of children are especially tragic, because they are frequently given drugs for what appears to be ADHD or autism, while the infection is in the treatable stage.

All over the country, selfless activists like Lisa Katz are courageously rising above their limitations to spread the word - without remuneration and with minimal acknowledgement.

Further articles to help others recognize their illness would be a great service. - Dr. Warren M. Levin, Phoenix

Friday, May 27, 2005

Methods of Lyme Disease Transmission

W.T. Harvey, M.D., M.S., M.P.H., and Patricia Salvato, M.D., of Diversified Medical Practices in Houston, Texas, were puzzled by the high number of patients testing positive for Lyme disease. Many of these patients presented with "established" criteria for Lyme disease, but others did not. The fact that southeastern Texas is a 'non-endemic' region, and that many of the patients had no history of erythema migrans rash, led the doctors to question established methods for Lyme disease consideration. Careful reflection of published research lead them to conclude the following.

First, the arthropod is not the exclusive vector of Lyme disease. In addition to ticks, Bb may be carried and transmitted by fleas, mosquitos, and mites. Second, Lyme disease is not exclusively vector-borne. Compelling evidence supports horizontal (sexual) and vertical (congenital) human-to-human transfer. Other front-line physicians are arriving at the same conclusions. "Of the more than 5,000 children I've treated, 240 have been born with the disease ," says Charles Ray Jones, M.D. Dr. Jones, who is the world's leading pediatric specialist on Lyme disease, says that about 90% of his practice is comprised of patients with the disease. He also states, "Twelve children who've been breast-fed have subsequently developed Lyme.”

University of Wisconsin researchers state that dairy cattle and other food animals can be infected with B. burgdorferi and hence some raw foods of animal origin might be contaminated with the pathogen. Recent findings indicate that the pathogen may be transmitted orally to laboratory animals, without an arthropod vector. Thus, the possibility exists that Lyme disease can be a food infection. Citing limitations of laboratory tests for the detection of antibodies to Bb, a study was conducted in 1995 at the University of Vienna (Austria) for its detection. Utilizing polymerase chain reaction testing for DNA, Bb was found to be present in both the urine and breast milk of patients previously diagnosed with Lyme disease.

A study conducted at the Sacramento (California) Medical Foundation Blood Center in 1989 concluded that there is evidence that the transmission of Bb is possible by blood transfusion . Furthermore, in 1990, a study by the Centers for Disease Control (CDC) in Atlanta, Georgia stated that the data demonstrates that Bb can survive the blood processing procedures normally applied to transfused blood in the USA.

One Woman’s Journey Through Lyme

by Sue Massie (N.D. Candidate)

Mysterious Symptoms for Years
At 42, with six lovely children and a wonderful husband, I thought my life was over! I was very ill with migraines, slurred speech, difficulty swallowing, atrophy in my muscles, excruciating pain throughout my body, memory loss, light and noise sensitivity, etc. These are just a few of the symptoms I suffered from on and off over the years, and they were progressively getting worse.

Paralyzed From The Neck Down
I eventually became paralyzed from the neck down, and developed an ALS-like condition.My husband was also very ill with debilitating symptoms including “buggy” eyes, migraine headaches, rib pain, radiating jaw pain, chest compression, fatigue and a racing heart (intermittent). We spent years trying a number of neurologists, cardiologists (including Yale), and all kinds of specialists, only to be given a new diagnosis with each visit. These included TIAs, Grave’s disease, possible MS, and even stress. Finally a Lyme-literate neighbor suggested my husband might have Lyme disease. I thought it was a ridiculous idea because my dad was supposedly the first case diagnosed back in 1980 in Monmouth County, New Jersey, and he was just fine (or so I thought). Our neighbor handed me the list of symptoms, and my husband had just about every one of them! I asked for her doctor’s name and we saw him immediately. He diagnosed my husband with Lyme disease and treated him with long-term antibiotic therapy. Six months after his diagnosis, I was also tested and diagnosed, and I started treatment as well. Five out of six of our children have now been diagnosed with Lyme disease* and had to be put on a special educational program to help them with their studies. (Lyme can often affect children and contribute to ADD, ADHD, memory problems, dyslexia, anger outbursts, fatigue, etc.)

102 ALS Patients Tested Positive For Lyme - In Treatment
I have talked with over 8,000 people with Lyme. 102 of these cases are ALS-diagnosed patients who were properly tested for Lyme and came up positive. I feel that people who are diagnosed with ALS/Lou Gehrig's disease, Multiple Sclerosis, Alzheimer’s, Lupus, Fibromyalgia, Chronic Fatigue and many other neurological and degenerative diseases, could actually have Lyme disease. To date, there is no definitive, 100% positive test for Lyme disease. However, patients should request (from a Lyme-literate doctor) to have a PCR test (to determine genetic material of Borrelia) or a Western Blot blood test (antibody assay) done by Igenex Labs in California (www.igenex.com). Most doctors are following the diagnostic protocol of doing a Lyme titre or ELISA test, which are not accurate. If a patient who has Lyme disease actually tests positive using the Lyme titre or ELISA test, their doctor would then order a Western Blot blood test. According to the Center for Disease Control, a patient must have a minimum of five bands (specific numbers and bands are how they read these tests), in order to be labeled positive for Lyme by Western Blot. Another important consideration is that Lyme antibodies must be present for a positive result, and if the patient has been taking steroids, Advil, Motrin, or other anti-inflammatories or antibiotics, this could cause a false-negative result. For this reason, patients should be clear of all OTC’s and prescription medications for a minimum of six weeks before testing, but even this cannot guarantee an accurate result.

My Lab Results Would Have Been Considered Negative
After testing, I only had one band - number 41, which is the “flagellin” (or tail) of the spirochete, specific for Borrelia bacteria (Lyme), so I would have been told that I was negative. Quite often, patients have to be diagnosed by symptoms alone. I know that most people reading this story probably know of someone who has been to various doctors, and is suffering without an adequate diagnosis, and people just label them as being a hypochondriac, etc.

Initial Signs Often Missed
Lyme disease is not necessarily associated with a “bull's eye rash and sore knees.” Less than 20% of patients ever see the tick, and less than 30% get the classic bull's eye rash. Tucking your pants in your shoes or wearing white so you can see ticks does not provide full protection. I was the only one in my family that saw a tick on the back of my hand, and only my one son had a rash (not a bull's eye, but more like impetigo all over his body). Co-infections are also a big part of Lyme, meaning not only do the tiny ticks infect you with Borrelia bacteria, but there is also possible infection with Babesia, Ehrlichia, Bartonella, mycoplasma, and the conditions of Epstein-Barr and HHV-6 (human herpes-6) viruses.

Dedicated To Helping Others
I have talked with thousands all over the U.S., including Hawaii and Alaska, Great Britain, Germany, Australia and even Japan. I am now a Certified Natural Health Professional. My health has improved about 95% and I have been off antibiotics for 2 years (after being on a multitude of them for 3 1/2 years). It has been a long journey for me, but now I am dedicated to helping others heal from Lyme.

Sue Massie is a Certified Natural Health Professional, an Iridologist, and is currently finishing her studies to become a Naturopathic Doctor. Contact: Nature's Garden of Health, Fair Haven, NJ, phone: (732) 933-4011, email: suemassie45@aol.com

Tick-Borne Diseases See Rise; Task Force Studies Prevention

The Vineyard Gazette
Martha's Vineyard

To many Vineyard visitors, Memorial Day marks the beginning of summer.

But to an ever-increasing percentage of the Island population, it represents the start of the tick-borne disease season.

And early reports suggest that the Island may be in for an especially tick-ridden summer. Deer ticks thrive in damp environments, which the wet spring and winter weather has certainly provided.

"There are definitely truckloads of ticks out there right now," said Island biologist Luanne Johnson, who has been studying the Vineyard's skunk population. "When I was capturing skunks in mid-April they would have about zero to five ticks on their body. Starting in early May I was finding 20-plus ticks on each animal."

This is the time of year when hordes of young nymph deer ticks begin to show up in Island grasses. The nymphs - which can be smaller than a poppy seed and are much harder to detect - are responsible for more than 85 per cent of deer-transmitted diseases.

Vineyard deer ticks have been known to transmit debilitating bacterial diseases such as tularemia, babesiosis, ehrlichiosis and Lyme disease.

The Health Report of Martha's Vineyard, a comprehensive health study made public this winter, confirmed that Lyme disease has reached epidemic levels on the Island.

According to the report, more than 12 per cent of full-time residents and seven per cent of part-time residents said they have been diagnosed or treated for Lyme disease. One in five Vineyard residents said they have had some form of a documented tick-borne disease.

The problem is even more profound up-Island, where 37 per cent of Chilmark residents and 34 per cent of West Tisbury residents said they have had a documented tick-borne disease.

The increasing numbers led to the formation of a tick task force - an informal committee that is trying to find ways to stem the public health epidemic unfolding on the Vineyard. Most members of the group have either contracted a tick-borne disease or have a family member who has.

With tick season on their minds, eight task force members met at the Polly Hill Arboretum on Wednesday to discuss different initiatives to control the tick problems on the Island, as well as the political hurdles that stand in the way.

Probably the most effective means to lower the tick population on the Vineyard is to reduce the Island's deer herd. Adult female ticks feed on large animals like deer during the fall and winter. One deer can feed dozens of ticks, and each female tick can lay between 2000 and 3000 eggs.

MassWildlife estimates the Island has between 30 and 60 deer per square mile. The tick task force would like to see the number reduced to under 15.

The easiest way to decrease the deer herd is through increased hunting. But so far such initiatives have met with opposition.

Task force members on Wednesday decided to ask the Dukes County commission to invite MassWildlife to schedule a public hearing on the Vineyard this fall to consider changing the Island's deer hunting regulations.

Martha's Vineyard and parts of Cape Cod are currently the only areas in the commonwealth with one week of shotgun season. All other parts of the state - including Nantucket - have two.

"MassWildlife wants Martha's Vineyard to extend its season," said Sam Telford, a parasitologist from Tufts University who has been studying ticks on the Vineyard and Nantucket for the last decade. "The word from MassWildlife is - what the Vineyard asks for, it will get."

Mr. Telford told task force members about deer hunting initiatives on Nantucket that appear to have made a difference in the prevalence of tick-borne diseases. The second week of shotgun hunting instituted five years ago eliminates an additional 200 deer per year. According to state reports, Nantucket in 2003 saw a 37 per cent decrease in reported cases of Lyme disease while Dukes County saw a 55 per cent increase.

The difference was enough to put Dukes County ahead of Nantucket for the most per-capita cases in the commonwealth.

This winter, responding to a request from the Nantucket selectmen, MassWildlife tried a third week of shotgun hunting in February. The special one-week season attracted 600 hunters, many from other parts of the country, who killed about 250 deer on the island. MassWildlife was pleased with the results, but many Nantucket residents reacted strongly against it.

A petition with more than 1,000 signatures - many of them from Nantucket hunters - forced Nantucket selectmen to write a letter to MassWildlife rescinding their support for any future special seasons.

"I think it provides a useful lesson for us here," Mr. Telford said. "Avoid an extra shotgun season at all costs."

Mr. Telford said Vineyard hunters have told him they do not necessarily want additional shotgun time. They prefer archery season, which already lasts more than a month, he said.

But tick task force members noted that the one week of shotgun hunting on the Island last fall resulted in almost four times as many kills as the five-plus weeks of archery.

Task force members also discussed ways to create incentives for increased hunting during the existing seasons - possibly through a deer-hunting derby with prizes, a cold storage facility for meat, or by opening access to previously restricted properties. Task force members sent letters to Island conservation organizations and all up-Island property owners of five acres or more asking them to allow hunters on their land during the winter.

One way to control the tick population without killing deer is through a four-poster system, about 20 of which are spread around the Island. Deer feed on corn in troughs that are flanked by permethrin-coated rollers, which kills ticks on their heads, necks and shoulders.

But task force members believe hunting is a better option because the four-poster system requires ongoing funding for maintenance, corn and chemicals, and it goes against MassWildlife's policy prohibiting the feeding of deer.

Task force members this week also expressed frustration at the lack of communication among Island health care organizations about tick-borne disease prevention and treatment. They said they had not been informed of an upcoming tick-related community health forum hosted by the Martha's Vineyard Hospital.

An educator from the Massachusetts Department of Health will speak about staying safe during tick season at the hospital on June 15 at 7 p.m., and will conduct the same program with a Portuguese translator at 8:30 p.m.

Tick prevention techniques to keep in mind this summer include: Limit your time in grassy or wooded areas; if you go walking, wear long, light-colored clothing; check yourself and pets for ticks or tick bites once a day, feeling for new bumps and looking for rashes; and if you have an unexplained fever or flu-like symptoms, go see a physician.

Thursday, May 26, 2005

Seriousness of Lyme disease is 'greatly underestimated'

By Hannah Fletcher, For Lee Agri-Media
Wednesday, May 25, 2005 12:59 PM CDT

Kathy Cuddeback has always led an active outdoor life but that active life has been impaired by a disease resulting from her love of the outdoors.

Cuddeback was diagnosed with Lyme disease in 1993. Doctors suspect she contracted the disease in 1977 from a tick bite she got while working in Tennessee and Kentucky as a naturalist.

She and her husband, Larry, have been farming their 366-acre farm in Washington County in southeast Iowa since 1980. They run small cow/calf and goat operations, a Christmas tree nursery and a dried-flower business, but her roles on the farm and as a naturalist have been cut short.

Cuddeback no longer works as a part-time naturalist for Washington County, a job she had for 13 years. She helps Larry on the farm when needed - if her health permits. Every day is painful.

"The seriousness of this disease is greatly underestimated," said Cuddeback, president of the Iowa Lyme Disease Association and board member for Emerging Infections in the Central States.

She has been working to spread the word about ticks and Lyme disease's potential in Iowa.

As spring brings warm, wet weather, tick season takes off. Farmers and others working or enjoying the outdoors, need to beware.

"Anybody who is having outside contact, particularly in woody or grassy areas, should beware of ticks," said Kelley Donham, University of Iowa occupational health specialist.

He believes farmers, because they often use equipment or are in crop fields when they are outdoors, are less likely to encounter the black-legged ticks.

Cuddeback says farmers should be on the lookout for ticks during activities such as checking fences, walking in pastures or working with livestock.

Wayne Rowley, an Iowa State University entomologist, has been documenting the occurrence of black-legged tick populations in Iowa from ticks people send in from across the state.

Last year, of the 550 ticks sent to the ISU lab, 198, or 36 percent, were black-legged ticks. Of the black-legged ticks, 22 tested positive for the bacterium that causes Lyme disease, Rowley says.

In the Midwest, Iowa has a smaller population of black-legged ticks and fewer Lyme disease cases than neighboring Minnesota and Wisconsin, Donham says.

"Most people (with Lyme disease) have spent time or have lived somewhere else and have come back here," Donham said.

Minnesota and Wisconsin account for 95 percent of all recorded Lyme disease cases, according to the Centers for Disease Control and Prevention in Atlanta.

Diagnosis is difficult because tests are only 60 percent reliable indicators of the disease.

Kevin Teale, Iowa Department of Public Health communication director, admits, "The test isn't fool-proof, and we are working on that."

In any case, experts recommend removing ticks as soon as possible by grasping the tick closest to where it is attached using a tweezers and pulling it out gently. Do not twist because this could cause the part of the tick to remain embedded in the skin.

Ticks should be put in a zip-lock bag and sent to: Lyme Disease Project, Department of Entomology, 440 Science II, Iowa State University, Ames, IA 50011-3222.

Wednesday, May 25, 2005

Woman speaks about her struggle with Lyme Disease

Updated: 5/25/2005 6:35 PM
By: Carmen Grant, News 10 Now Web Staff
New York

It's been a long journey for Cara Cahill.

She has Lyme Disease, but for 11 months she went untreated because doctors didn't know what was wrong with her.

"I even said to one neurologist in Syracuse. I said to his nurse, do you think I have Lyme Disease and she said you absolutely don't have Lyme Disease. I said ok. So when a doctor tells us, you think they are right," said Cara Cahill.

watch video

Tuesday, May 24, 2005

Report From the 30th Anniversary of Lyme Disease

More than 250 people from all over the United States and Canada gathered together in Farmington Connecticut on May 7, 2005, to learn about Lyme Disease and its co-infections. Sponsored by The Greater Hartford Lyme Disease Support and Action Group, the main theme was misdiagnosis and the interconnectedness of our many chronic autoimmune illnesses.

The key organizers of this special event, Randy and Laura Sykes and Chris Montes, worked together with other members of the group to bring together a wonderful collection of the most respected doctors and researchers, specializing in the diagnosis and treatment of Lyme Disease, mycoplasma and other co-infections. The overall atmosphere of this meeting was electrifying. There was such a sense of unity and purpose .The first speaker, Dr. Whitaker, specifically mentioned the special collective aura which exuded from those in attendance.

Dr. JoAnne Whitaker, the President and Director of Research of the Bowen Research and Training Institute, opened the meeting with her presentation focusing on ALS and it's possible connection to Lyme Disease. Dr. Whitaker has developed a critically important test for Lyme Disease called the Bowen QRIBb Test . It uses the fluorescent staining technique to identify the actual L or cyst form of the Lyme disease microbe....Borrelia burgdorferi (Bb). This patented test identifies the antigen of the bacteria and not the body's antibodies. One receives a microphotograph of the actual microbe identified in their body.

Dr. Whitaker stated that they rarely find Bb in the blood in the spiral corkscrew form but almost always it is in its L form. Because this microbe can change it's form or shape, it is very adept at avoiding detection by the body's immune system and antibody testing. This could be one of the reasons why the diagnosing and treatment of Lyme Disease is so controversial.

Dr. Whitaker postulates that ALS could be the end stage of Lyme disease. She talked about the many ALS signs and symptoms which exactly mirror the symptoms of Lyme Disease....and of course the most important fact is that her test has found that most if not all ALS patient bloods which were sent to her were positive for Lyme.

The Bowen Lab receives blood samples from all over the world. The patients who send their blood to Bowen have previously been diagnosed with conditions such as ALS, Alzheimer's, Lupus, Chronic Fatigue Syndrome, Fibromyalgia, Bell’s Palsy and more. Almost all of these patients test positive for Lyme using the Bowen Test. Some doctors and researchers feel that this means the test is inaccurate....too many positives. But others are beginning to realize that these findings are most likely representing the true proportions of this epidemic we are faced with. That it is not SARS, West Nile Virus and Anthrax we need to be worrying about, but rather the microbes such as mycoplasma, bartonella, babesia and borrelia burgdorferi that are already in our midst, spreading slowly but steadily throughout the population and causing untold suffering, disability and death.

Our next illustrious speaker was Dr. Lida Mattman. She graduated from Yale, with distinction, receiving a PHD in immunology. She has published 75 journal articles and a book entitled "Cell Wall Deficient Forms - Stealth Pathogens". She was also nominated for the Nobel Prize in medicine.

One of the most important points she presented was the fact that spirochetes are among the best at disguising themselves. In order to reliably detect the presence of this organism, one must look for the pleomorphic forms and not the classic form. This is also true for other types of bacteria. Spirochetal diseases, in general, tend to become very widespread and then endemic, which she believes has happened with Lyme Disease.

Dr. Mattman also showed evidence that spirochetes of several different types, including the Bb strain, are involved in Multiple Sclerosis. Spirochetes, which were found in autopsied brains of M.S. patients looked more like borrelia in morphology. Spirochetes were also found in the spinal fluid of M.S. patients. Dr. Mattman also mentioned a relationship between Lyme, ALS and Parkinson's. Those Parkinson's patients who were treated for Lyme all improved.

(Writer’s Note: After listening to Dr. Mattman's presentation, I concluded that we need to look for the L or cyst form of these microbes when testing those with chronic illness. In order to do this, direct detection methods must be used.)

Dr. Bernard Raxlen, a neuropsychiatrist, spoke about the many patients who are being misdiagnosed with somatiform conditions (all in the head), who, when tested for Lyme Disease, all tested positive. Doctors are being presented with many medically unexplained symptoms and when they find no organic causes, they label the patient's problem as psychosomatic. To borrow a quote from the conference program, "Dr. Raxlen is the only psychiatrist in the tri-state area (N.Y., N.J, CT) to initiate a total comprehensive treatment program utilizing both oral and IV antibiotic treatment intervention in conjunction with neuropharmacology and stress management for depression, panic disorder, bipolar mood disorder and prefrontal lobe deficit syndrome. He has uniquely integrated these treatments with supportive modalities from his work in psychoneuroimmunology and nutritional medicine."

Connecticut State Attorney General Blumenthal gave a short speech commending the activists in the Lyme community for working so hard to get the information about Lyme Disease to the public. He also gave an award to Polly Murray for being the pioneer of Lyme Disease. She was a housewife and mother who, along with her children and neighbors, experienced the devastation of Lyme Disease before anyone knew what it was. She wrote the book, "The Widening Circle", which told of her struggle.

A second award went to Dr. Jones, one of the only pediatricians in the state of Connecticut who openly treats chronic active Lyme Disease in children. (Dr. Jones could not be there in person to accept his award because, though it was Saturday, he still had children to treat.)

Our next speaker was Dr. Richard Horowitz, a physician with twenty years of experience in treating complicated cases of Lyme Disease. He practices in Hyde Park, N.Y and has treated over 8,000 cases of chronic tertiary stage Lyme disease.

He spoke about the many factors which contribute to the whole chronic Lyme Disease scenario: environmental toxins, neurotoxins, poor diet and co-infections which all pile on top of each other to form the total chronic Lyme picture. He told us of the over 100 strains of Bb in the United States and the over 300 strains worldwide. Only several of these strains are currently being tested for, and this is one of the obvious explanations for the lack of proper treatment, or any treatment at all. It is becoming more and more apparent that many of these chronic or so called autoimmune diseases do have an infectious cause ...or several infectious causes.

Disseminated Lyme Disease can affect all of the following systems in the body: the dermatologic, neurologic, cardiovascular, opthalmologic and musculoskeletal systems. Dr. Horowitz spoke extensively about co-infections and how they play a major role in the patient's lack of ability to get well. It was mentioned that the Lyme/Babesia combination was the most serious and difficult to eradicate. As with borrelia, there are also many different strains of Babesia not currently being tested for. Dr. Horowitz said that although everyone is different, it usually takes at least a year of treatment or more in typical cases of chronic Lyme. The general rule of thumb is to treat the patient for two additional months after all symptoms have resolved. The reason given for extended treatment is that Bb is a very slow replicator and can hide out intra-cellularly. The Bb organism can only be killed when replicating. It was also brought up that different strains require different types of antibiotics. Thus, in many cases treatment consists of experimenting, and trial and error. Spinal taps are often negative for Lyme disease because of circulating immune complexes in the spinal fluid, which means that a negative test on spinal fluid cannot rule out Lyme disease as the patient's problem.

The Lyme microbe can change its structure and can also cloak itself to hide from the immune system. Dr. Horowitz made it clear that very few "chronic" Lyme patients test positive on the Western Blot and in fact the actual percentage who test positive may only be 1%.

(Writer’s Note: I have heard from certain researchers that most of those with chronic Lyme do not produce antibodies to the germ. In other words, those who are the sickest with Lyme disease do not test positive and therefore do not get treatment. This makes such a definite statement that diagnosis needs to be clinical, based on symptoms, patient’s history, and the doctor's ability to discern the general symptom complex. The only way a doctor can acquire this discernment is through experience. This is why the world of science should be learning from our Lyme-literate doctors, and not attacking them.)

Professor Garth Nicolson is President and Chief Scientific Officer for the Institute of Molecular Medicine (http://www.immed.org). A main interest of his is researching the role of chronic infections in many different chronic diseases such as Chronic Fatigue Syndrome, Gulf War Illness, Fibromyalgia, Rheumatoid Arthritis and autoimmune diseases.

One of the first things that Prof. Nicolson mentioned was that a large subset of Chronic fatigue patients actually have Lyme Disease. Nicolson feels that Chronic Lyme involves viruses, bacteria and fungus. He says that this chronic state evolves over time. The Lyme infection can weaken the system and allow for these additional microbes to accumulate. It is also possible that it could work the other way around. A collection of other microbes, besides Lyme, could weaken the immune system, which could then allow Lyme to become chronic.

Nicolson discussed co-morbid states, explaining that most patients with chronic illness are infected with more than one pathogen. Each disease causes its own problems and this could be the reason why so many signs and symptoms keep shifting. Some of the culprits he mentioned are: mycoplasma, chlamydia, rickettsia, brucella, borrelia, coxiela, EBV, HHV6, CMV, enterovirus, Hepatitis C and fungus.

Each patient has their own unique overlap of symptoms. Because of this they end up going to different specialists who hand them a specific disease label to match their set of symptoms. There are usually no definite tests, causes or cures for all the subsets; only symptomatic treatments are offered. In the meantime, these infections continue to weaken the body.

Fatigue is the most common symptom of all those diseases because the pathogenic intracellular bacteria attack the mitochondria or battery of the cell. Lipids are the insulation for these mitochondria, and when the lipid membranes are stripped off, this depletes the energy and this is why fatigue is the most common complaint. One of the keys to improvement then would be to somehow restore the mitochondria of the cell in order to restore energy. Some nutritional supplements can restore mitochondrial function and therefore improve energy.

Nicolson also advised checking for dental infections in chronic illness, as this is a very efficient means of transporting germs into the body. And he noted that being bitten by a tick is not the only way to acquire these infections. Some are sexually transmitted, and some can be passed through the placenta, breast milk, tears and other bodily fluids.

One of the most important bits of advice he shared with us was to keep your immune system in tip top shape. He suggested reducing alcohol, caffeine, sugar and fats. Some of the immune enhancements he spoke of were: natural antimicrobial products, hyperbaric oxygen treatment, hydrogen peroxide baths, ozone therapy, Infrared saunas and sublingual B vitamins. Vitamins C, E and CoQ10 were also thought to be needed. Helpful minerals mentioned were zinc, chromium, magnesium and selenium. He stressed the fact that antibiotics by themselves will not cure you. It is up to the patient to follow appropriate healthful suggestions.

Professor Nicolson also spoke about Gulf War Illness and how it's symptoms mirror Chronic Fatigue Syndrome, Lyme, Fibromyalgia and certain other diseases. For more detailed information, read the abstract of the following study: “Mycoplasmal Infections in Chronic Illnesses: Fibromyalgia and Chronic Fatigue Syndromes, Gulf War Illness, HIV-AIDS and Rheumatoid Arthritis”.

Trevor Marshall, PhD, is the chairman of the Autoimmunity Research Foundation. He has developed The Marshall Protocol for the treatment of Th1 diseases, including Borrelia. Trevor Marshall was originally working with Sarcoidosis and eventually discovered that the solution for Sarcoidosis was also the solution for Lyme disease and other chronic infections.

The Marshall Protocol focuses on curing the disease itself. He uses a drug named Benicar in his protocol and avoidance of sunlight. For a deeper discussion and explanation of this treatment please visit his site.

Dr. Lesley Ann Fein was the Master of Ceremonies at the conference. She holds both an MD and an MPH, and completed her Fellowship in Rheumatology at New York University. She is an experienced researcher and a seasoned public speaker.

She spoke mostly about Bartonella, or Cat Scratch Disease. But first she raised the question, " Why do doctors get into trouble for treating Lyme disease?" She listed insurance statistics which pointed to why the insurance companies are playing a major role in the persecution of doctors who treat Chronic Lyme and as to why patients are not receiving treatment..

Regarding Cat Scratch Disease or Bartonella, Dr. Fein told us that the disease has been recognized since 1950. Most of us think of it as being transmitted solely by the scratch of a cat. However, it has been postulated that it can also be transmitted by a tick. According to a recent article published by Drs. Eskow and Mordecai, there have been several identified cases where Lyme Disease and Bartonella co-exist in the same patient, which raises the question: “Can Bartonella be another infection transmitted by ticks?”

We were told that 70% of the ticks in the Netherlands were positive for Bartonella and that in New Jersey more ticks tested positive for Bartonella than Lyme. Bartonella cases also correspond to the same time of year as Lyme cases, which suggests that Bartonella can also be passed by ticks.

The Central Nervous System (CNS) symptoms of Bartonella are very similar to those of Lyme. There were 327 patients initially treated for Lyme and 92% of them tested positive for Bartonella. Fein said that Bartonella is difficult to diagnose and treat and becomes chronic in an unknown number of people.. She says that further studies should be initiated to better understand this issue. Testing for this infection is very important because Bartonella requires different treatment than does Lyme. Some antibiotics which work best for treating Lyme would not work well in the treatment of Bartonella.

Dr. Steven Phillips wrapped up our conference with a comprehensive and informative presentation concentrating on the connections between Lyme Disease and Multiple Sclerosis. He is the President of the International Lyme and associated Diseases Society (ILADS), www.ILADS.org and has been researching Lyme Disease for the past 15 years.

Dr. Phillips spoke of the cyst or L form of the Lyme spirochete and how the approved current testing does not look for these forms. The Lyme organism can change forms according to the condition of the body. The proteins on the spiral forms are very different from the proteins on the cyst form. He made some interesting points; he believes that most people with Lyme are asymptomatic and that Lyme can have a long latency period - neurologic symptoms can present themselves many years later after the initial infection or bite.

He went on to say that Multiple Sclerosis is a chronic central nervous system infection similar to Lyme. Every feature you see associated with M. S. can also be found in Lyme. Lyme testing is badly flawed, but even with these drawbacks, it has been found that M.S. patients are twice as likely to test positive for Lyme.

Phillips said that when the spiral form of Bb was injected into the spinal fluid, there was 100% conversion of Bb from the spiral form to the cystic or L form. The cyst forms of the Lyme germ are being found in the spinal fluid of M.S. patients. He then made the following crucial point: steroids are frequently used to treat M.S., but steroids can increase bacterial growth and make Lyme much worse. Lyme testing is very inaccurate, especially in those with a long-term chronic illness.

Dr. Phillips presented study after study which support the fact that chronic Lyme is not a "post Lyme" autoimmune condition but rather an ongoing chronic infection. He also showed us an extensive number of studies which link M.S to Lyme Disease, and explained that one of the clues that Lyme can be a chronic infection is the herxheimer reaction. A herxheimer reaction is a worsening of symptoms when initially being treated with antimicrobials. This indicates that the treatment is working, -that the medicines are hitting the target and creating a type of cleansing reaction.

Phillips strongly suggested that Bb may be one of the causes of M.S. He stressed that persistent infection can occur despite long-term antibiotics. He also mentioned that brain and cervical cord lesions are found in both Lyme and M.S. Phillips called for a large-scale treatment of antibiotics in Multiple Sclerosis.

This conference was not concerned exclusively with the Lyme bacteria but was revealing to us that Borrelia burgdorferi, along with many other co-infections may be at the root of many of our autoimmune diseases.

You can view this whole conference on DVD. For more information on how to order please contact Randy Sykes at 1-860-658-9938

Even antibiotics can't always stop the bacterium

Borrelia can hide in the human body for years
from the Academy of Finland

Transmitted by tick bites, the Borrelia bacterium can hide in the human body for up to several years in spite of antibiotic treatment. The patient's symptoms may be so vague that it is extremely difficult to make the connection. The research team under Professor Matti Viljanen have now developed a mouse model that can be used to locate the hidden Borrelia bacterium and to target treatment more accurately. Professor Viljanen and his team are working in a joint Finnish-Swedish research consortium under the Microbes and Man research programme that is jointly funded by the Academy of Finland and the Swedish Foundation for Strategic Research.

The mouse model developed by Professor Viljanen and his team closely resembles chronic borreliosis in humans. Antibiotic treatment of infected mice means that the bacteria can no longer be detected in the animals by ordinary means. The symptoms, however, remain unchanged. When the mice then receive treatment that changes their immune defence system, the bacterium comes out of hiding, which may have continued for months. This result lends strong support to the theory that the Borrelia bacterium can withdraw into some unknown hiding place in the patient's body even after antibiotic treatment. The mouse model opens the door to locating these hiding places and the mechanisms with which the bacterium hides itself. This in turn may pave the way to developing methods for the treatment and prevention of borreliosis.

Ticks transmit several diseases, the most common in Scandinavia being Lyme borreliosis. A hidden Borrelia bacterium may spread from the skin to various organs, where it can hide and cause symptoms for years. Even at this stage it is usually possible to evict the bacterium from the patient's body by proper treatment. However, the symptoms persist in around one in ten patients in spite of all treatments. Sometimes the symptoms may be extremely severe and cause permanent disability.

The Borrelia bacterium is a master of disguise

Bacterium manipulates the human defence system
20 May 2005
from the Academy of Finland

Borrelia bacteria are capable of masking themselves in the human body and deceiving the immune defence system. In this way they can hide in the human organism even for periods of years. In their recent studies Professor Seppo Meri and his team have managed to trace the evasive movements of the Borrelia bacterium in the body. Their work is part of the Microbes and Man research programme, jointly funded by the Academy of Finland and the Swedish Foundation for Strategic Research.

When they first enter the human organism, Borrelia bacteria do not always cause very intense inflammation. However, they proliferate unnoticed and later on the symptoms get worse. The immune system is unable in this situation to respond because the bacterium actively prevents any defensive reactions.

Professor Meri and his team have found that Borrelia bacteria, which are carried by ticks and birds, are capable of absorbing the protein that controls human inflammation (complement factor H). Normally, antibodies and the complement would kill off the bacteria, but this ingenious kidnap operation allows the Borrelia bacteria to disguise themselves and avoid being killed or devoured by inflammation cells. Consequently, the bacteria can continue to proliferate in the body and even reach the brain. An advanced bacterium may lead to a serious condition known as neuroborreliosis, which among other things may cause chronic headache or facial nerve paralysis.

One of the difficulties in diagnosing the symptoms caused by the Borrelia bacterium is that only half of all people who get a tick bite develop the tell-tale rash. Therefore, the bacterium often gets to make its way into the body and eventually into the bloodstream through the skin. Some one in ten patients are unable to shake off their symptoms even if they receive proper antibiotic treatment.

MICMAN is a three-year research programme in 2003-2005. The programme is a joint Finnish-Swedish venture funded by the Academy of Finland and the Swedish Strategic Research.

Time to up awareness of Lyme Disease

By Meg Hughes
May 21, 2005

On April 15: In an unusual show of unity, more than half of California's legislators in both political parties have voted to pass a resolution declaring the first week of May Lyme Disease Awareness Week, according to Herb Dorken, Ph.D., volunteer legislative advocate for the all-volunteer nonprofit California Lyme Disease Association (CALDA), the resolution's sponsor. May 4 to 10 was California's first Lyme Disease Awareness Week.

I am writing this as a patient, caretaker for three other family members, and past co-leader of Sierra Foothills Lyme Disease Support Group, with experience extending more than fifteen years.

Lyme Disease is very serious and there are many diagnosed patients in our community. Tick borne Lyme Disease is a year-round problem in Nevada and Placer counties. Nymphs are most prevalent in spring and summer, with adult ticks active fall through spring. Many people don't identify or notice tick bites, particularly if they have been bitten by a nymph, which may be less than poppy-seed size. Nymphs are common in leaf litter under deciduous trees, especially under oaks and anywhere mice are numerous. Sitting on downed logs is especially risky, since nymphal ticks climb up on them.

The United States Center for Disease Control protocol states that Lyme Disease is a clinical diagnosis. The diagnosis is aided by additional information, including blood tests, which need to be interpreted carefully, according to several local doctors. It's important to note that the typical "bulls-eye rash" is seen in less than 60 percent of those who develop Lyme Disease. Most of the time the rash is not a classic "bull's eye," and rashes may show up later at other sites than the tick bite. People may not experience the flu-like symptoms.

When Lyme Disease is diagnosed promptly and treated properly, most people recover quickly. However a CALDA survey showed almost half the respondents had their diagnosis delayed four years because their doctors did not understand how to interpret the tests. People not treated early often develop chronic Lyme disease with crushing fatigue, cognitive dysfunction, neurological damage, arthritis, heart rhythm irregularities, vision or hearing deficits, or mental problems. People may be misdiagnosed with chronic fatigue, fibromyalgia, MS, or even a psychiatric illness.

Since the spirochetes can remain dormant for periods of months to years, even when treatment is given promptly, patients and doctors often believe that minimal antibiotic treatment has been effective. Many people who contact the Sierra Foothills Lyme Disease Support have originally been treated, assumed they were cured, and later have relapsed. It is also possible for reinfection to occur.

Lyme Disease may be complicated by co-infections. Ticks in California may also carry ehrlichia, a disease that also infects horses; babesia, a malaria-like parasite that infects red blood cells; and tularemia, or rabbit fever, a potential bioterrorism agent; and several other diseases.

Monday, May 23, 2005

Life With Lyme

Sharon Ulrey prepares materials to be sent to all physicians in the area providing information about Lyme disease. Ulrey caught Lyme disease when she was 15.

By Rick Charmoli, Cadillac News
Cadillac, MI, USA

Helsel is not a drug addict but says he won't quit taking his pills. He is living with Lyme disease and the Manton resident said compared to a year ago he feels better.

"When I first came down with it, I felt like someone hit me with a sledge hammer.

"I would think about it most of the night with intention of putting it all behind me and starting fresh the next day," he said. "Then you find yourself on the couch with one shoe on and the other lying there, you never went anywhere. I'm doing a lot better."

While the logger of more than 40 years believes taking the medicines has helped to improve his quality of life, they also have a few side effects.

One pill he takes make him more sensitive to the sunlight and if he is exposed for too long he will burn to the point of blistering.

Still, he would rather deal with the occasional blister on his hand or arm then go back to the way he was when he first started showing symptoms of the disease.

"It changes your life. To tell you the truth, there were six or seven times I would have rather died. When I was on the couch I wanted to go to work and then get there and couldn't do it," he said. "I can handle it better now. The medicines are working now and regulating it better."

Helsel's wife, Amy, said it has been about two years since her husband first started having symptoms associated with the disease. They believe he contracted it while working in the woods. The Helsels first noticed something was wrong when he started having red "bulls-eye" type rings on various parts of his body.

Although his wife does not have the disease, it too has taken a toll on her as well.

"I would say it impacted me more than the kids because they are grown. I had to do more work. The truth is I sometimes get resentful," she said. "I know I shouldn't but it changes your life together. It is sort of like I was married to someone one age and then the next day married to someone 30 years older."

Besides having an impact on Helsel's health, his wife said it also has had a tremendous impact on their finances.

The Helsels do not have health insurance and some of the prescriptions are between $200 and $300 apiece. With the amount of medicines needed, the Helsels started to go in debt.

"Not only do we not have insurance, but when he couldn't work we were really screwed. What happens is you get in debt," she said. "I would say the worst part besides his health is the financial aspect."

For another Cadillac area resident, Lyme Disease also has played a role in their life. Unlike Helsel, Sharon Ulrey has been living with the disease for almost her entire life.

Growing up in the Saginaw area, Ulrey said she believes she was infected with the disease at the age of 15. Now the 63-year-old said she just wants to help others who suffer from the disease.

"Where we live is beautiful but we have ticks. Everyone should have someone help with a tick check before they go to bed," she said. "This disease can lie dormant. They start having symptoms that are like flu-like symptoms when in fact it could be Lyme disease. That is why it is so very hard to diagnose and many of the tests come back with false negatives and positives."

Lyme disease is caused by the bacterium, Borrelia burgdorferi, and in the Midwest is spread through infected deer tick bites, according to the Center for Disease Control. The two tests are the enzyme-linked immunosorbent assay test or ELISA and the Western immunoblot test or Western Blot. One reason the tests are so inaccurate is because there are about 100 strains of Lyme disease, Ulrey said.

"My doctor saved my life. I was so bad he actually saved my lifeŠ. If I can help one or two people so they can find out what they really have to get the right treatment, it will be worth it," she said. "I was considering starting a support group."

Ulrey said May is Lyme Awareness Month and she can be contacted at 775-2549. Likewise, a person may call the Michigan Lyme Hotline at 888-784-5963 and ask for Linda Lobes, president of Michigan Lyme Disease Association.

Intercell coordinates the development of a novel vaccine against Lyme borreliosis


Vienna, Austria, May, 23, 2005 - Intercell, a leading developer of next generation vaccines for the prevention and treatment of major infectious diseases reported the start of its research activities under a European Union Sixth Framework project to develop a novel vaccine against Lyme borreliosis, the BOVAC project. The BOVAC project brings together expertise from leading scientists and biotech companies from six institutions in Austria, the Czech Republic Germany and Sweden.

Intercell is the coordinator of the project and performs research using its Antigen Identification Technology (AIP). Intercell will have the exclusive right to commercially exploit intellectual property generated by the project in the field of vaccines and therapeutics. Other expected outcome of the project includes diagnostics for diseases caused by Borrelia and software for the analysis of genomic sequence information.

Lyme borreliosis is the most common tick-transmitted severe disease in Europe and North America. The often insufficiently diagnosed disease is caused by the Borrelia bacterium and infected people suffer frequently from neurological abnormalities, cardiac disorders and a delayed onset of arthritis. Today prevention relies mainly on avoiding exposure to tick bites and there is no registered vaccine available on the market to prevent Lyme borreliosis in the USA and Europe. The BOVAC project is targeting an important unmet medical need of the global healthcare industry which goes beyond the borders of Europe and it was ranked among the top 30 from nearly 1000 cooperative research project applications submitted to the European Commission under its life sciences, genomics and biotechnology for health call within the Sixth Framework Program (FP6). The European Commission provides support to the consortium, mounting to 1.4 million Euros for the next two years.

The Lyme borreliosis in Europe and the USA involves several different bacterial genospecies of Borrelia, thus complicating the search for antigens that will cross-protect against the various forms of the pathogen. BOVAC has been initiated to systematically identify Borrelia genes suitable for the development of vaccines and diagnostic markers. The project applies expertise and technologies covering genome sequencing, Intercell’s Antigen Identification Program, AIP, infectious disease models and epidemiological studies. Intercell’s CEO, Alexander von Gabain, states: "The acceptance of and trust in Intercell’s AIP in both the science and investor community to deliver new antigens has contributed considerably to the start of BOVAC and its EU support".

The BOVAC project is in compliance with the program goals defined by the Sixth Framework Program (FP6) of the European Union and designed to strengthen the European Research Area, in particular small and medium sized companies (SMEs), but also scientific goals towards the use of genomic information to further our knowledge in life science and health.

About Intercell’s AIP
Antigen Identification Program, or AIP, identifies novel antigens from a variety of pathogens. Intercell’s team focuses on those antigens that are believed to induce the strongest response from the human immune system, thus providing a viable basis for the potential development of novel and more powerful prophylactic and therapeutic vaccines and antibody treatments. The AIP technology has successfully identified a large number of novel antigens relating to a wide variety of infectious diseases such as Staphylococcus aureus and Streptococcus pneumoniae. Certain product candidates identified under Intercell´s AIP are currently partnered with either Sanofi Aventis or Merck & Co., Inc.

» Intercell AG, Austria (IC)
» MWG Biotech AG, Germany (MWG)
» BioTest s.r.o., Czech Republic (BTCZ)
» Umeå University, Sweden (UmU)
» Medical University Vienna, Austria, (MUV)
» National Institute of Public Health, Czech Republic (NIPH)

Sunday, May 22, 2005

Midlander honored for faith, strength

William Shoemaker
Midland Daily News
Midland, MI

Natalie Lodico was diagnosed with Lyme disease a year and three months too late.

The disease can typically be treated easily if it's detected within three months. But in the two years between when she contracted it and was diagnosed, the virus permeated her blood stream and "screwed" into her deep muscle tissue, beyond any simple remedy.

By the time she and her family knew what was wrong, she was having blinding migraines daily and sleeping 16 hours a day.
"All right, God," she said to herself, "I'm barely living now, but if I'm barely living then I'm doing it through you."

That was eight years ago. Since that time, Lodico has risen out of the five-year debilitating illness, until last summer when she could finally say she was healthy again.

Now, Covenant College, the Christian school she attends in Lookout Mountain, Ga., has awarded the 22-year-old Midland native for her outstanding Christian character and achievement.

The "Spirit of Friendship Award" goes annually to the Covenant student who demonstrates the highest level of Christian caring and service to the community.

"While she's one of the most morally upright students I'm aware of, she makes friends with students who have difficulty making it," said Beckah Tuggy, resident director at the school. "I've seen firsthand how she's taken people under her wing."

Lodico's two-year Covenant roommate, Emily Miller, said that when she ran into tough times, Lodico was there to help her pull through. Lodico stayed with her, listened to her and even brought her to the hospital when she needed it.

"I was having a lot of problems with depression, and went into hospital twice because of it," she said. "I tried backing away from everyone as much as possible, and she kept coming after me."

Lodico, whose parents run a counseling center in Midland and whose father preached in Christ Presbyterian Church in Midland until she was 14, spent her free time before she left for college traveling on mission trips with the youth group at Midland Reformed Church. She went to Honduras, where she helped build a hospital, and to inner-city St. Louis, where she taught Bible school and helped renovate a school even while she struggled through the lingering symptoms of the disease.

"I think Natalie's illness gave her a special sense of knowing exactly what people need when they're isolated and having problems," said her mother, Sandra.

It also encouraged the growth of her interest in writing and art. Lodico said that when she was confined to bed for most of the day, in the worst of her illness, she kept a journal of her experiences and the internal conversations she had with God.

"It was one of the most beautiful times in my life," she said. "Sharing my thoughts with God, something solidified within me."

When she was healthy enough to leave the house, she started a writers' community in the Midland area called Scrawl, which met twice a month at members' homes. Since starting at Covenant, she also became editor of the students literary annual, as well as yearbook photographer, and hopes to finish a degree in art within another year and a half.

Having planned to attend Covenant since she was 11, Lodico always thought she wanted to do missionary work after school. But she's found that creativity and connecting with people now take precedence in her life.

"If I can show someone a photograph, and convey something -- some emotion -- they can't describe, that's enough for me," she said.

Friday, May 20, 2005

Birds carry bacteria across the hemispheres: Migratory birds transmit borreliosis

Migrating birds transmit different forms of the Borrelia bacterium or Borrelia spirochetes to every corner of the globe. Birds are especially prone to Borrelia infected ticks during their autumn and spring migrations. The bacteria may also persist for several months in the birds and it may then be reactivated in response to migration. Borrelia spirochetes and the role of birds as global transmitters of the bacteria have been investigated by a Swedish research group led by Professor Sven Bergström. The group is part of a Finnish-Swedish research consortium included in the Microbes and Man Research Programme, which is co-funded by the Academy of Finland and the Swedish Foundation for Strategic Research.

Migratory birds play an important role in the transmission of Lyme borreliosis. The fact that the same type of Lyme disease exists in both the northern and the southern hemisphere shows that birds participate in the natural circulation of Borrelia spirochetes by carrying them all across the globe.

Previously, it was thought that only mammals could function as reservoir hosts for Borrelia infected ticks. The research results of the Bergström group show that Borrelia infected ticks can exist in birds, as well – i.e. without a mammal reservoir.

Lyme Borreliosis is an infectious disease caused by the Borrelia bacterium. It can cause eczemas, arthritis and, at the worst, even different kinds of neurological disorders. In Finland, a couple of thousand people are infected by the disease each year.

Microbes and Man Research Programme is a three-year programme during 2003-2005. With the budget of 5,4 million euros 15 projects are funded. The programme is implemented in Finnish-Swedish collaboration.

Tick nymphs mean high risk for Lyme disease

By Douglas Karlson/ dkarlson@cnc.com
Friday, May 20, 2005

This is not a good time of year to go for a walk in the woods. You might get attacked by an Ixodes scapularis nymph. That's a baby deer tick.

According to entomologist David Simser, this is nymph season, and it's a bad one. Nymphs cause more cases of Lyme disease than adult ticks, and are most active in June.

"It seems like they're very active and they're numerous," said Simser, who's a tick expert with the Upper Barnstable County Cooperative Extension. After an especially cold and snowy winter, ticks may get a late start in finding a host - like a mouse, a deer or a human, and so once spring arrives they're frantic.

"We are now entering the high risk stage," said Simser. "As many as 25 percent of all nymphs may carry the Lyme disease. They carry other diseases too."

A single tick can, in fact, carry three or more different pathogens. Several of those are not uncommon on Cape Cod, said Simser. The three most common tick-borne diseases are Borreliosis, which is Lyme disease; Anaplasmosis (sometimes referred to as HGE or Ehrlichiosis) which has symptoms similar to Lyme disease, and Babesiosis, which resembles malaria.

Unlike Lyme disease, which takes at least 24 hours to be transmitted by a tick, Anaplasmosis can be transmitted in just 5 hours.

Ticks also carry Tularemia, which is rare but has been found on Martha's Vineyard, and Rocky Mountain spotted fever, which Simser said is very rare.

Lyme disease, especially when compounded with other tick-borne diseases, can be difficult to diagnose (there are up to 50 possible symptoms). Sometimes you have symptoms but the pathogen remains undetected.

"You're being told you're fine but you know you can't get out of bed," said Simser.

"The luckiest thing that can happen to a person who is bitten by an infected tick is to get that bull's-eye rash, because that's a definitive symptom," said Brenda Boleyn, chairwoman of the Cape & Islands Lyme Disease Task Force.

But not everyone gets the rash.

"It is a diabolical illness because it strikes people in so many different ways," said Boleyn. "People have to be increasingly vigilant."

"We are in an endemic area, and if we go outside we're at risk, unfortunately," said Simser. Because nymphs are the size of poppy seeds, they often go undetected. Simser advises people to inspect themselves regularly. Feel behind your neck, and ears, and under your hair.

"You might think you have a little pimple, it may be a tick," he said.

State Rep. Shirley Gomes said people used to try to hush up the Lyme disease problem on Cape Cod for fear of discouraging tourism. That not so anymore, she said at the task force's fifth annual physicians forum in Hyannis last week. Over the past few years, she said, attitudes have changed.

"Overall people are very interested in letting people know that even in our utopia there are a few glitches," said Simser.

Lyme disease walk takes place Saturday

New Lenox fund-raiser: Awareness raised in Will County about affliction, prevention

By Janet Lundquist

NEW LENOX — Lyme disease has a personal meaning for Maureen Johnson.

It formed about seven years ago, after her husband Russell was bitten by a tick.

He contracted Lyme disease from the bite, which touched off a struggle to diagnose him and find effective treatment that took the family out of state. It took two years of treatment to fight back the disease, she said.

"If we had known what we know now seven years ago, we would have been able to react at the first warning," said Johnson, of New Lenox. "Once his health stabilized, I got involved with awareness on the state level."

As part of her effort to make others aware of the disease, Johnson has organized the third annual Lyme Disease Foundation Walk-A-Thon, which will be held at 9 a.m. Saturday in New Lenox.

The walk will begin and end at Martino Junior High, 731 E. Joliet Highway. Registration begins at 8 a.m. Pre-registration is preferred but is not necessary, Johnson said.

Lyme disease is often misdiagnosed as multiple sclerosis, rheumatoid arthritis, fibromyalgia, lupus or chronic fatigue syndrome. Its initial symptoms are fairly general — flu-like, rashes, fatigue, headache, muscle aches and fever.

The Will County Health Department plans to closely monitor area Lyme disease activity. Plans for enhanced surveillance come in the wake of significant disease increases reported across northern Illinois during 2004.

Lyme disease is a progressive and potentially serious infection transmitted to humans through the bite of an infected deer tick. Illinois Lyme disease cases increased 317.6 percent from 1999 to 2003, and entomologists believe the tick most often implicated in disease transmission is now firmly established throughout northern Illinois.

Lyme disease was recognized in 1977, when unexplained arthritis was increasingly reported among children living in Connecticut. The disease is most common to northeastern and mid-Atlantic states, northwestern California, plus areas of Wisconsin, northern Illinois, Minnesota and Michigan.

More than 17,000 U.S. cases were reported during 2004 and the 2005 totals are expected to be much higher.

Entomologists reported that disease-carrying ticks had been identified in several Illinois counties, including Kankakee, Will and Winnebago. Will County cases totaled 22 during 2004, up from just nine the previous year.

Johnson, who has been working locally to raise awareness for about five years, said her efforts have helped some, but not enough.

Her message: take Lyme disease seriously. If you are bitten by a tick and start to see symptoms, seek immediate medical attention.

"Don't brush it off casually," Johnson said. "Whether you have the rashes or something else, it's not something that's going to go away."

Wednesday, May 18, 2005

Living with LYME

The often-mysterious disease, passed by the deer tick, is difficult to diagnose and treat
By BETHANY CARSON - H&R Staff Writer

DECATUR - Belva Gadlage's daily life is broken into two-hour increments, rotating antibiotics, blood thinners and supplements. She takes 43 pills a day, with a few warm baths and many prayers in between.

It took more than a year for her to receive the diagnosis of "The Great Imitator," her name for Lyme disease because it is a multisystem disease that can affect every tissue and organ in the body. It also can mimic, be misdiagnosed or contribute to numerous other conditions.

Now, when she's not working as a clinical professional counselor, she expends most of her energy connecting with others who understand the complicated manifestations of Lyme disease.

Her body reacted to untreated Lyme by giving her constant stabbing, burning sensations, worsened by cold weather, tight-fitting clothes and bed sheets.

"It feels like you stuck your finger in an electrical socket, and it won't turn off," she said. She wore overalls over her petite frame and Nike flip-flops on her socked feet, two mainstays in her wardrobe since Lyme has changed her life.

She still doesn't know when or how she contracted the disease.

The U.S. Centers for Disease Control and Prevention said humans become infected with a Lyme bacterium after an infected deer tick has bitten them. The agency said 95 percent of the 23,000 cases in 2002 were reported in a dozen states, not including Illinois. The closest was Wisconsin.

Local research and anecdotes might suggest otherwise.

"Do the deer ticks in Wisconsin look at a sign and stop?" Gadlage asked sarcastically. "It's out there. It's very, very close to us, and it can destroy your body. How can there be something so close to us and we don't know anything about it?"

The CDC said the most common symptom is a "bull's-eye" rash, sometimes accompanied by migraines, fever, fatigue, headache, muscle aches and joint aches.

Gadlage felt none of those.

In January 2003, she awoke with flulike symptoms. Five weeks later, she developed a severe stiff neck and a tingling finger. Initially treated for a pinched nerve, her burning sensation spread and strengthened after neck surgery. Her surgeon did nothing wrong. The trauma from any surgery would have triggered the Lyme, she said in hindsight. She later developed a twitching in her face.

Her primary care physician, neurologist and surgeon did all the testing available, considering multiple sclerosis, Lupus and Lyme disease. All came back negative.

She spent hours researching; yet, she never closely looked at Lyme because the first few symptoms didn't match her condition. Had she scrolled down further on the CDC's Web site, she would have recognized familiar symptoms of untreated Lyme disease: stiff neck, facial palsy and sensory nerve inflammation.

Susanna Warner also experienced the difficulty of obtaining a diagnosis, starting eight years ago. As a middle school student and cross-country runner, she was diagnosed a year after her first symptoms. She is still coping with the long-term effects of the disease.

She has worked with another Central Illinois resident with Lyme, Chris Corrie of Monticello. They formed the East Central Illinois Lyme Disease Support Group.

"The strange thing about this disease is there are probably more people who have it that don't recognize it," Corrie said. "The support group is a huge tool in people's recovery. It makes them aware that there are other people out there in the same boat that they are in with the same kind of symptoms."

He continued, "The root problem of Lyme disease is there is not a recognized, gold star test."

He cited Dr. Dick Warner, Susanna Warner's father, a University of Illinois professor of wildlife ecology who pressed for the need for the state to look into Lyme disease more carefully even before his daughter fell ill.

"There is no doubt that this organism is spreading in Illinois," Dick Warner said.

Professor Uriel Kitron's research at the U of I at Urbana indicates a local perspective. He has conducted an ongoing study, beginning in the mid-1990s, looking at the risk of Lyme disease in Wisconsin and Northern Illinois. In 2002, the study concluded north-central areas of Illinois have an adequate habitat for tick populations to grow, especially along the Illinois and Mississippi rivers.

"We think the rivers provide very good corridors for movement," Kitron said. "They can bring the ticks to a new area."

Whether the ticks survive in new terriroty, however, depends on the environment. "Ticks need humidity," he said. "They don't do well if it's really wet. You need wood and the right kind of soil and other kinds of factors for the ticks to do well."

He said ticks have thrived for at least a decade in two Illinois parks, Castle Rock State Park in Ogle County and Loud Thunder Forest Preserve in Rock Island County.

Closer to home, Kitron said Rock Springs Center, Friends Creek Regional Park and Sand Creek Recreation Area could have an appropriate environment for ticks. On the other hand, he said he would not expect to find large numbers and would not expect them to survive. The ticks also might not be infected.

"If there is a risk, it is very, very low," Kitron said. He added humans have one to two days to detach a tick before infection occurs.

The downside of living in a low-risk area, however, is the opportunity for overlooking Lyme disease as a diagnosis is much higher, he said. Not only are physicians less inclined to test for Lyme but the actual tick can be hard to detect. The Lyme Association of Greater Kansas City said a tick in its nymph stage is as small as a poppy seed.

Funding for Lyme disease research is also difficult to secure, according to Dick Warner.

"No. 1, it's controversial because you can't prove how many people have Lyme," he said. "No. 2, not that many people die outright from Lyme disease."

He has started working with a Boston Lyme specialist, Dr. Sam Donta, to develop direct-detection tests. Warner said the tests would be more reliable than the current standard tests, such as the Titer and the Western blot that measure the immune system's reactivity to the Lyme bacteria.

The CDC and U.S. Food and Drug Administration have supported tests for extended immune system functions.

Dick Warner disagreed with that recommendation.

"The problem with Lyme disease is it usually evades the immune system, so there's only a vague response," he said. "Any immune-system based test is going to be unreliable."

Donta, a retired professor of medicine at Boston University, agreed and said while the Western blot produces more specific results, it still doesn't single out proteins that are unique enough to Lyme.

"We need more discriminating tests, and the Western blot isn't going to do it," he said, adding the test only tells whether the body has been exposed to the disease, not the level or severity of the disease.

He said scientists have looked at DNA in blood, spinal fluid and urine but found nothing. He said they incorrectly concluded the cells were absent of Lyme, which is because Lyme bacteria are rarely in the blood, spinal fluid and urine.

Instead, he said, scientists need to look at the root of what's causing the Lyme symptoms, such as the numbness, burning and brain fog. That means, he said, scientists should look at the nerve roots of the spinal cord and the brain.

"There has been research in monkeys, but there is no more of this going on," he said. "People want to see results that appear to be well-controlled studies. That does make sense. The problem with that is I still haven't figured out what the best study is."

Not only do scientists have to battle the complexities of Lyme disease, but they also have to face the difficulty of developing sound experiments with the right people involved to secure funding.

"We need to really sort out who has Lyme, why they respond or don't respond, and what else they have," he said. "Then we could set up reasonable studies."

Don't underestimate seriousness of Lyme disease

By Hannah Fletcher, For Lee Agri-Media
Tuesday, May 17, 2005 8:06 AM CDT

BRIGHTON, Iowa - Kathy Cuddeback has always led an active outdoor life but that active life has been impaired by a disease resulting from her love of the outdoors.

Cuddeback was diagnosed with Lyme disease in 1993. Doctors suspect she contracted the disease in 1977 from a tick bite she got while working in Tennessee and Kentucky as a naturalist.

She and her husband, Larry, have been farming their 366-acre farm in Washington County in Southeast Iowa since 1980. They run small cow/calf and goat operations, a Christmas tree nursery and a dried-flower business, but her roles on the farm and as a naturalist have been cut short.

Cuddeback no longer works as a part-time naturalist for Washington County, a job she had for 13 years. She helps Larry on the farm when needed if her health permits. Everyday is painful.

"The seriousness of this disease is greatly underestimated," said Cuddeback, president of the Iowa Lyme Disease Association and board member for Emerging Infections in the Central States.

She has been working to spread the word about ticks and Lyme disease's potential in Iowa.

As spring brings warm, wet weather, tick season takes off. Farmers and others working or enjoying the outdoors, need to beware.

"Anybody who is having outside contact, particularly in woody or grassy areas, should beware of ticks," said Kelley Donham, University of Iowa occupation health specialist.

He believes farmers, because they often use equipment or are in crop fields when they are outdoors, are less likely to encounter the black-legged ticks.

Cuddeback said farmers should be on the look-out for ticks during activities such as checking fences, walking in pastures or working with livestock.

Wayne Rowley, an Iowa State University entomologist, has been documenting the occurrence of black-legged tick populations in Iowa from ticks people send in from across the state.

Last year, of the 550 ticks sent to the ISU lab, 198, or 36 percent, were black-legged ticks. Of the black-legged ticks, 22 tested positive for the bacterium that causes Lyme disease, Rowley said.

Of the 22 ticks, 13 came from Allamakee County in Northeast Iowa. The others came from Buchanan, Clayton, Johnson, Louisa, Marshall, Muscatine and Winneshiek counties.

In the Midwest, Iowa has a smaller population of black-legged ticks and fewer Lyme disease cases than neighboring Minnesota and Wisconsin, Donham said.

"Most people (with Lyme disease) have spent time or have lived somewhere else and have come back here," Donham said.

The disease was originally discovered in Lyme, Conn. Connecticut, other northeastern states, Minnesota and Wisconsin account for 95 percent of all recorded Lyme disease cases, according to the Centers for Disease Control and Prevention in Atlanta.

Cuddeback said she has been contacted by about 250 people in Iowa who have been diagnosed or are questioning whether they have the disease.

"It is not just on the East Coast. It is in Iowa, too. We know ticks don't stop at the border," she commented.

Diagnosis is difficult because tests are only 60 percent reliable indicators of the disease.

Kevin Teale, Iowa Department of Public Health communication director, admits, "The test isn't fool-proof, and we are working on that."

He said the health department has been documenting the number of confirmed Lyme disease cases in Iowa since 1989. There has been one case reported so far this year and 45 reported last year. In 2003, a record 72 cases were reported, but most years there are around 20 cases, he said.

In any case, experts recommend removing ticks as soon as possible by grasping the tick closest to where it is attached using a tweezers and pulling it out gently. Do not twist because this could cause the part of the tick to remain embedded in the skin.

"The best thing to do is save the tick. If you have a bulls-eye rash send the tick in or contact your physician and they should be able to ascertain if it is a deer tick bite," Rowley said.

Ticks should be put in a zip-lock bag and sent to: Lyme Disease Project, Department of Entomology, 440 Science II, Iowa State University, Ames IA 50011-3222.

If caught early, Lyme disease can be beat and symptoms can be lessened with the use of antibiotics.

But, a good rule of thumb is to beware of ticks when spending time outdoors.

Tuesday, May 17, 2005

Putting Lyme Disease in the Bull’s-Eye

Newswise — Polly Murray and Judith Mensch refused to take no for an answer. Facing a baffling of array of symptoms afflicting members of their family, the Lyme, CT mothers persisted in putting their concerns before the medical community. Then, in late 1975, they found David Snydman, M.D., a Connecticut Department of Public Health official and Alan Steere, M.D. a Yale rheumatologist. Both physicians had trained as epidemiologists with the Centers for Disease Control.

Snydman, Steere, and a team of physicians at both Yale University and U.S. Navy Submarine Medical Center in Groton, CT, began to slowly unravel the mystery of rashes, unexplainable outbreaks of what appeared to be juvenile arthritis and other seemingly unrelated symptoms. Slowly and painstakingly, they were able to link the symptoms to the deer tick that lived in the Connecticut woods. Lyme disease had been identified.

Jonathan Edlow, M.D., vice chairman of the department of emergency medicine at Beth Israel Deaconess Medical Center tracks this medical detective saga in “Bulls-Eye: Unraveling the Mystery of Lyme Disease", published by Yale University Press.

“The book not only chronicles the fast-paced epidemiological detective work that went into solving the mystery, but also confronts many of the controversies about Lyme disease that persist to the present day,” says Edlow.

Lyme disease season getting under way

By Matt Conn
For The Journal

Not garlic nor wooden stakes nor the ubiquitous cross will save you from the blood-sucking, disease-carrying tiny arachnids that could be lurking in your lawn, which would otherwise seem a safe place to roll with your children or read a book while smelling freshly mown grass.

Ticks may be small, but some of them can take you down with Lyme disease, which is most common from May through August and quite treatable, but in no way comfortable.

"I spent a month feeling as bad as I've felt in my entire life," said Dr. Steve Kirkhorn, who contracted the disease in late 2003.

Kirkhorn, who directs both the both the Occupational Health Department and the National Farm Medicine Center at Marshfield Clinic, had actually diagnosed Lyme disease in private practice when he lived in the St. Croix Valley.

Monday, May 16, 2005

Stages of Lyme Disease

Lyme disease may progress in stages from mild symptoms to serious, long-term disabilities if left untreated. There are three stages of Lyme disease: early localized, early disseminated, and late persistent.

Stage 1: Early localized infection

In about 30% of the people infected with bacteria that cause Lyme disease, an expanding circular rash is accompanied by flulike symptoms such as:
  • Fatigue or lack of energy, which is the most common symptom.
  • Headache and stiff neck.
  • Fever and chills.
  • Muscle and joint pain.
  • Swollen lymph nodes.
As many as 70% have only flulike symptoms (no rash) or have no symptoms at all.

Stage 2: Early disseminated infection

If Lyme disease is not detected and treated while early symptoms are present, or if you do not have early symptoms that trigger the need for treatment, the infection may spread to the skin, joints, nervous system, and heart within weeks to months after the initial infection.

Symptoms at this stage may include:
  • Persistent fatigue.
  • Additional skin rashes in several places on your body that develop as the infection spreads.
  • Pain, weakness, or numbness in the arms or legs.
  • Inability to control the muscles of the face (paralysis of the facial nerves).
  • Recurring headaches or fainting.
  • Poor memory and reduced ability to concentrate.
  • Conjunctivitis (pinkeye) or sometimes damage to deep tissue in the eyes.
  • Occasional rapid heartbeats (palpitations) or, in rare cases, serious heart problems.

Stage 3: Late persistent infections

If Lyme disease is not promptly or effectively treated, damage to the joints, nerves, and brain may develop months or years after you become infected (late Lyme disease). Symptoms at this stage may include:
  • Swelling and pain (inflammation) in the joints, especially in the knees.
  • Numbness and tingling in the hands, feet, or back.
  • Severe fatigue.
  • Partial facial nerve paralysis (Bell's palsy), which usually occurs within the first few months after the tick bite.
  • Neurologic changes, including problems with memory, mood, or sleep and sometimes problems speaking.
  • Chronic Lyme arthritis, which causes recurring episodes of swelling, redness, and fluid buildup in one or more joints.
Heart, nervous system, and joint symptoms may be the first signs of Lyme disease in people who did not have a rash or other symptoms of early infection.

Dunmore family suffers ravages of Lyme disease

By Joe Sylvester
Scranton Times Tribune

Gary Lancia's woodwork graces a number of homes in Northeastern Pennsylvania, including some upscale abodes.

He built a business around his craft. His wife, Helen, helped him run the business.

That changed about four years ago. Now she helps him walk, or he uses a wheelchair, because of neurological damage. He is legally blind with only some peripheral vision. He has memory loss.

Mr. Lancia, who turned 49 on May 6, almost died nearly two years ago.

Their four children -- three with Mr. Lancia -- have had health problems, too. They all have joint pain. Like Mr. Lancia, they all have been diagnosed with Lyme disease.

"We're not the only family that has it like this," said Mrs. Lancia, who believes Lyme disease is more widespread than most people realize. The blood-borne affliction is con- tracted primarily by a deer tick bite; it can be passed on through blood transfusions.

Mrs. Lancia, 49, believes other health problems she has suffered, such as rheumatic fever, were related to the disease, though she can't prove it.

According to the Lyme Disease Foundation, a nonprofit group based in Tolland, Conn., 37,865 cases of Lyme disease have been reported in Pennsylvania since 1980, the third-highest state total behind New York and Connecticut.

Lyme disease is treated with antibiotics. But if not adequately treated, the infected person can develop more serious symptoms, such as unrelenting fatigue, joint or muscle pain, facial paralysis, heart damage, psychological disturbances, stomach problems, neurological disorders, blindness, deafness, even death, according to the Lyme Disease Association of Southeastern Pennsylvania, based in Chadds Ford.

According to the International Lyme and Associated Diseases Society, Lyme disease sometimes is misdiagnosed as multiple sclerosis, amyotrophic lateral sclerosis (ALS), seizure, arthritis or other afflictions.

Anthony Lionetti, M.D., of the Tick Borne Disease Center in Philipsburg, N.J., where Mr. Lancia has been treated, said Lyme disease could look like those other diseases, but not always. He said symptoms such as fatigue, headaches, and muscle and joint pains could show up months after a tick bite.

Dr. Lionetti said treatment within 24 hours of a bite could prevent the victim from getting Lyme disease, and it can be cured if caught early.

Mrs. Lancia believes years of misdiagnosis and the lack of proper treatment led to her husband's problems.

Mr. Lancia is believed to have contracted the disease from a tick bite in Marine boot camp in Parris Island, S.C., in 1976. According to Mrs. Lancia and some of her husband's medical documents, which she shared, Mr. Lancia was hospitalized three weeks after boot camp with pneumonia. He later suffered another tick bite during summer training in 1981.

Mr. Lancia now has a painful growth around his spinal cord known as perichordoma, which led to his dependence on the wheelchair and may be related to his Lyme disease, his records show. He also has short-term memory loss and verbal dyslexia.

At times he is lucid. During a recent interview at the Lancias' kitchen table, he teased his wife and made jokes. But he also showed he has a good idea what is happening to him.

"The good thing about not having a good memory is you don't remember how you used to feel," Mr. Lancia said during a more serious moment. "Helen said I was sicker."

If there is any lesson to be learned from her family's affliction, Mrs. Lancia said, it is that society should recognize how important it is to diagnose and treat Lyme disease. She believes there should be regional clinics to treat the disease. A blood and urine test done once a week for 20 weeks is the most accurate way to diagnose Lyme disease, she said.

"If you know you got bit within 24 hours and get treated right away, you can control it," Mrs. Lancia said.

Friday, May 13, 2005

Lyme disease task force to hold all-day awareness conference

By Robert Miller

RIDGEFIELD — In 1991, therapist Sandy Berenbaum began treating a 15-year-old boy who, a few months earlier, was an honor student. By the time Berenbaum began treating him, the boy had lapsed into a set of deep, irrational fears.

"He said he couldn't love anyone or anything, even a pet, because what he loved would die," Berenbaum said. "He was refusing to go to school. I found out after I began talking to him that he was also suffering from insomnia."

Berenbaum quickly figured out what he was suffering from wasn't paranoia or melancholia. It was Lyme disease. A few days after he began taking antibiotics to fight the infection, his psychological maladies went away, to be replaced by physical ailments that were harder to treat.

"It took a year-and-half to recover," Berenbaum, "but he ended up graduating from college,"

Berenbaum, who now lives in Danbury and practices in Brewster, N.Y., will be one of several speakers Saturdayat an all-day conference "Protecting Your Family From Lyme Disease" sponsored by the Ridgefield Lyme Disease Task Force.

Berenbaum's message will be straightforward: that anyone practicing psychotherapy in an area where Lyme disease is endemic should know about the disease and its symptoms. Fairfield County and Putnam County, NY are places where Lyme is rampant.

Jennifer Reid, the task force's co-chairwoman, said the conference will also have room for Lyme disease support groups and for state agencies teaching people how to rid their yards of ticks.

Lyme disease is a tick-borne disease. Humans, once infected by the bacteria, can suffer flu-like symptoms: a high fever, headache, aching back and sore joints. Unlike influenza, there are no respiratory ailments accompanying the other symptoms. They often, but not always, have a target-like rash around the site of the tick bite.

The point of the conference, and others like it, is to simply educate people about Lyme disease, Reid said. Then, if people get caught in the web of the disease, they will know where to go for help.

"If you get a disease like cancer, there are all these wonderful support groups to help you," she said. "But Lyme disease is very complex and it can be a struggle to find psychologists or social workers who understand it. They're out there. They're just not always readily available. "

The Ridgefield Lyme Disease Task Force will hold an all-day seminar, "Protecting Your Family From Lyme Disease," Saturday from 9 a.m. to 5 p.m. at Scotts Ridge Middle School, 750 North Salem Road, in Ridgefield. Doors open at 8:15 a.m.

Admission and lunch are free and the public is urged to attend.

For information, call the Ridgefield Lyme Disease Task Force at (203) 431-7006

Contact Robert Miller

at bmiller@newstimes.com

or at (203) 731-3345

Thursday, May 12, 2005

Tick trauma

Tiny insect nearly did in veteran deputy
Staff Writer
Brainerd Daily Dispatch - Brainerd,MN,USA

CROSSLAKE -- In his 27-year career as a deputy with the Crow Wing County Sheriff's Department, Jan Mezzenga has had several harrowing experiences.

He wrestled with a large psychiatric patient at Building 22 at the Brainerd Regional Human Services Center three years ago, causing a knee injury that still bothers him today.

Mezzenga once responded to a man's request to speak to a law enforcement officer. When Mezzenga arrived at the home, the suicidal man pulled a double-barreled 10-gauge shotgun on him and told Mezzenga to kill him. The situation eventually ended peacefully.

And in an infamous scene that made statewide headlines last May, Mezzenga's squad car was rammed by a manure spreader and showered with a load of manure by the grandfather of murder suspect William Myears when law enforcement officers obtained a search warrant to search his property in the Erika Dalquist case.

"Stuff happens to me," Mezzenga said with a smile.

But Mezzenga's most life-threatening situation can be traced back to a tiny deer tick.

Mezzenga, 57, nearly died after his spleen inexplicably ruptured last June, causing him to bleed internally. Doctors at St. Joseph's Medical Center in Brainerd removed his spleen in an emergency surgery, along with the near gallon of blood that had pooled in his abdomen.

While doctors don't understand why Mezzenga's spleen suddenly ruptured, they do believe they know what caused the rupture: a rare tick-borne disease that is quickly becoming not so uncommon in the Brainerd lakes area.

Mezzenga was diagnosed with not one, but three tick-borne illnesses: Lyme disease, ehrlichiosis and babesiosis. Babesiosis, which is caused by a parasite that lives on some types of ticks and is similar to malaria, can be fatal for people who have had their spleens removed or have a suppressed immune system.

But Mezzenga's case is the only one, possibly in the world, in which a healthy person's spleen suddenly ruptured because of babesiosis. Mezzenga's spleen samples are now being studied and a St. Joseph's pathologist is co-authoring a case report for a national medical journal about Mezzenga's case.

What is babesiosis?

Babesiosis (pronounced bah-be ze-o-sis) is a tick-borne illness caused by a parasite that lives on some types of ticks.

Although the disease is considered rare, there have been several cases of babesiosis diagnosed in Crow Wing County.

Most cases are mild, but can develop into a severe infection and can be fatal, particularly for people who have had their spleen removed or have a suppressed immune system.

Symptoms are similar to erhlichiosis and include a sudden high fever, chills, sweating, fatigue, poor appetite and a severe headache. Some people with this illness may not have symptoms.

Antibiotics are administered to treat babesiosis, which is diagnosed via a blood test.

Mezzenga has become a medical anomaly.

"We're hoping it was just a fluke because there are a lot of ticks out there," said Dr. Nick Bernier, director of medical affairs at St. Joseph's. "Why Jan's spleen didn't take care of it (babesiosis), we don't know. We think he was just unlucky."

Mezzenga underwent a hernia operation June 13 and was recuperating at home when his health took a turn for the worse. By June 25, he had lost his appetite, was suffering from a constant fever and chills, was profusely sweating and had lost 10 pounds in five days. He had no energy. Walking to his garage was a chore.

"Basically, I felt like I got run over by a truck," said Mezzenga.

Since he was suffering from pain in his abdomen so soon after his hernia operation, Mezzenga made an appointment with Dr. Ross Bengston, who performed his operation. But Bengston told him the pain couldn't be caused by the surgery and suspected he may be suffering from Lyme disease. He immediately referred Mezzenga to another physician. Mezzenga tested positive for Lyme, was given antibiotics and sent home.

About 3 a.m. Mezzenga, suffering from incredible pain in his abdomen, passed out on his living room floor, eventually waking and managing to sit down in a chair. His wife, Doris, a Crow Wing County sheriff's dispatcher, awoke and found him in the living room. Despite his pain, he didn't want to drive from their Crosslake home to the Brainerd hospital to only be given pain medication, he said. His wife gave her stubborn husband three choices, he said. She told him he could go to the St. Joseph's emergency room by ambulance, go with her in their car or she'd call on-duty sheriff's deputy Tim Clarine to "throw you in a squad car and take you to the hospital."

"I know better than to argue with her," said Mezzenga, who rode with his wife to the hospital.

When Mezzenga arrived at the emergency room, his blood pressure was so low he couldn't be given pain medication. The hospital staff worked vigorously to save his life, running eight IVs in his body at one time in an attempt to get his blood pressure back up so he could undergo surgery. Bengston and Dr. James Dehen performed the life-saving operation in which they had to remove his spleen.

Doctors ran blood tests and discovered that Mezzenga had both Lyme disease and ehrlichiosis. The St. Joseph's pathology department went back over his blood smear to attempt to figure out why his spleen ruptured. It was then they found intracellular parasites in his blood, a sign of babesiosis.

Bernier has since joked with Mezzenga, telling him he won the tick lottery. He had suffered through all three tick-borne diseases found in Crow Wing County.

Bernier said now St. Joseph's Medical Center is performing automatic babesiosis tests on any patients who are sick enough to be hospitalized from Lyme disease or ehrlichiosis.

"It's a sneaky disease," said Bernier, of babesiosis. "If you're not familiar with it, it can sneak up on you."

Bernier said St. Joseph's sees a few cases of babesiosis a year, but usually in older patients without spleens or those with a compromised immune system. Many times healthy people with babesiosis don't realize they have it; their body fights off the disease.

Dr. Dianne Kendall, a pathologist at St. Joseph's, will co-author a case report with another academic physician that they hope to have published in a national medical journal about Mezzenga, though he won't be named.

"It's not unusual for someone to have multiple tick diseases at the same time but having his spleen rupture is unique," said Kendall.

Dr. Joe Howard at Brainerd Medical Center is continuing with follow-up patient care for Mezzenga. Mezzenga will have to take antibiotics for the next seven years to help ward off any illnesses because he no longer has a spleen.

"I've had patients who don't remember having a tick bite," Howard said of those diagnosed with a tick-borne disease. Mezzenga doesn't remember finding a deer tick on him either.

While people who contract a tick-borne illness won't likely become as ill as Mezzenga, they need to be aware that Crow Wing County has an unusually high rate of the diseases. Bernier said St. Joseph's has already had three patients hospitalized with severe cases of ehrlichiosis this spring and the tick season has just begun.

Symptoms of Lyme disease include a bull's-eye rash that may have a reddened area with a clear area in the middle at the original site of the tick bite. It also may appear in several other places in the body. Other symptoms include a fever, headache, chills, muscle and joint pain.

Ehrlichiosis symptoms usually start about 5-10 days after a person has been bitten by an infected deer tick or black-legged tick but can take up to a month to appear. Symptoms are similar to Lyme disease and include a sudden fever of 102 degrees or more, chills, shaking, fatigue, severe headache, muscle and joint pain, nausea and vomiting, cough, stomach pain and a sore throat. It is rare to have a stuffy nose or sinus problems with Ehrlichiosis, which can help distinguish the disease from the flu, a bad cold or sinus trouble. Like Lyme disease, ehrlichiosis can be treated with antibiotics.

Mezzenga has been on medical leave since March and is undergoing physical therapy for his knee injury. He said he's trying to get better so he can return to the sheriff's department, a job he's enjoyed for 27 years.

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