Tartunta lapsena + 3 muuta tarinaa

Borrelioosiin sairastuneiden henkilökohtaisia kokemuksia taudista ja sen hoidosta.

Valvojat: Bb, Sailairina, maranoma, Tiina

Tartunta lapsena + 3 muuta tarinaa

ViestiKirjoittaja soijuv » Su Huhti 03, 2011 20:59

Ben Secino sai punkinpureman ollessaan vain 18 kuukauden ikäinen. Lääkärit eivät pitäneet asiaa merkittävänä. Ben oli v.2008 neljännellä luokalla kun hänen silmänsä alkoivat väristä, hänellä oli ongelmia koulunkäynnissä, päänsärkyä ja neurologisia ongelmia. Maaliskuussa hän ei kyennyt laskemaan kolmeen, hänellä oli kävelyongelmia, valoherkkyyttä, lihasheikkoutta, uupumusta ja kovia kipuja. Perhe vei lasta lääkäriltä toiselle mutta kukaan ei kyennyt auttamaan. Oireiden väitettiin olevan psyykkisiä.

Yksi Benin tapaamista monista ammattilaisista, psykologi Shelia Statlander, oli tehnyt luettelon Borrelioosin oireista. Secinot huomasivat Benin oireiden sopivan lähes jokaiseen oireeseen. Ben vietiin sellaisen lääkärin vastaanotolle joka hoitaa Borrelioosia suurilla, pitkäaikaisilla antibiooteilla. Borrelioosin hoito on pitkäaikaista. Benin tila on vähitellen palautumassa hoitojen avulla ennalleen. Monet kroonista Borrelioosia sairastavat taistelevat tautia vastaan yhdistämällä erilaisia lääkkeitä ja lääkkeettömiä hoitoja kuten dieetti, kuntoilu, vaihtoehtoiset hoidot jne. Tuhannet kroonista Borrelioosia sairastavat jakavat netissä ja sähköpostitse kokemuksiaan lääkäreistä, taudista ja hoidoista. Tuhannet ovat ottaneet kokemustensa jälkeen vastuun omasta hoidostaan ja monet ovat löytäneet menetelmän parantaa itsensä.

Jan Dooley sai punkinpureman 10v sitten golf-kentältä. Lääkärien mukaan kyseessä on krooninen väsymysoireyhtymä, Parkinsonin tauti, MS-tauti tai menopaussi. Aviopuolison kuoleman jälkeen kipeiden nivelten, muistihäiriöiden ja kävelyvaikeuksien syyksi ehdotettiin surua. "Tarinani on normaali. Suurin osa saa lähetteen neurologille MS diagnoosilla."

Borrelioositestien luotettavuus on noin 50%:n luokkaa. Dooleyn kohdalla immunoblottaus-testi, Western blot, oli positiivinen mutta vasta vuosien kuluttua hän kuuli asiasta sillä lääkärien mukaan hänen oireensa olivat emotionaalisia eivätkä fyysisiä. Oireiden kulku oli aaltomaista; joinakin päivinä oireet olivat lieviä, toisina voimakkaita. Vuosien mittaan Dooleyn tauti paheni ja hän alkoi etsiä tietoa oireistaan. Samaan aikaan "ruohonjuuritasolla" alkoi esiintyä aktiivisuutta Borrelioositiedon levittämisessä. Tätä kautta myös Dooley löysi viimein tietoa omasta tilanteestaan. Nyt hän on, Benin lailla, Borrelioosiin erikoistuneen lääkärin hoidossa (LLMD). Molemmat auttavat myös muita sairastuneita mm. kertomalla taudista julkisuudessa.

Hoitoja etsivät potilaat joutuvat usein maksamaan hoidot itse. Sue Sullivan arvioi käyttäneensä vähintään 10 000$ testeihin ja hoitoihin. Ongelmat ovat suuret koska Sullivan on taudin vuoksi työkyvytön. Hän arvelee saaneensa bakteeritartunnan vaellusretkeltään. ensimmäiset oireet olivat kovat nivelkivut, uupumus, keskittymisongelmat, puhevaikeudet. Aika ajoin hän ei osannut kävellä kotiin, unohteli avaimet auton lukkoon ja jätti auton käyntiin poistuttuaan siitä jne. Yhtenä monista testeistä tehtiin borrelioositesti. Se oli positiivinen, mutta CDC:n kriteerien mukaan näyttö ei ollut riittävä. Hän löysi kuitenkin lääkärin joka oli perehtynyt riittävästi Borrelioosiin. Hänen mukaansa sairastin kroonista neuroborrelioosia. Aviopuolison jouduttua työttömäksi hän ei ole kyennyt maksamaan antibioottihoitoja. Perhe on menettämässä taudin vuoksi omakotitalonsa. Sullivan käyttä hoidossan parhaillaan yrttilääkintää ja lisäravinteita. Hän elää päivän kerrallaan.

42-vuotias Jeff sai Borrelioosi-diagnoosin kaksi vuotta sitten mutta hän epäilee sairastaneensa tautia 22 vuotta. Hän kärsi alussa lähinnä fatiikista ja masennuksesta. Myöhemmin hän sai rytmihäiriöitä, pahoinvointia, huimausta ja yöhikoilua. Vuonna 2009 hän menetti kävelykyvyn. Kaksi vuotta aikaisemmin otetut borrelioositestit olivat negatiiviset. Jeff käytti paljon aikaa netissä löytääkseen selityksen oireilleen. Huomasin mitkä ruumiintoiminnot olivat hajoamassa muuta en keksinyt mikä niiden syynä oli. Hän matkusti tri Feinin vastaanotolle. Fein diagnosoi Borrelioosin. Jeff ei ollut varma uskoako diagnoosia koska oman paikkakunnan lääkärit eivät uskoneet siihen. Heidän mukaansa lääkäri huijaa Jeffiä.

Vuonna 2007 julkaistiin tutkimus (New England Journal of Medicine ) jonka mukaan Borrelioosia sairastavilla on kroonisia oireita. Tutkijoiden mukaan lääkärien tulee kertoa että mikään antibiootti ei paranna tautia.
Jeffin mukaan lääketeollisuus on korruptoitunutta bisnestä. Hän on päättänyt antibioottien sijaan hoitaa itseään erilaisilla lääkkeettömillä hoidoilla kuten yrtit ja lisäravinteet. "Elimistölle on annettava mahdollisuus parantaa taudit."



http://www.worcestermag.com/home/top-st ... 48184.html

Barbara Taormina

Story Created: Mar 30, 2011 at 6:13 PM EDT

Story Updated: Mar 30, 2011 at 6:15 PM EDT

Ben Secino likes inventing stuff. He?s been thinking lately about a teddy bear that warms up and comforts kids who are fussy or can?t sleep. For adults, he?s come up with a hovering no-hands flashlight, a kind of Star Wars-like ultra-handy night gadget. People will be banging down the doors of Home Depot to get one.

Ben is also thinking about designing video games, the kind with stories, strategies, intricate puzzles and great graphics. And when you talk to him you have no doubt he?ll do all of that, and more.

But three years ago, when he was in the fourth grade, nothing was certain about Ben?s future.

?It was awful,? recalls his mom, Diane Secino. ?His eyes would jitter, and he was having a lot of trouble in school. By late January, he was having horrifying migraine headaches and neurological problems.?
Secino kept hoping for the best as she watched the worst unfold.

?By the end of March, he couldn?t count to three,? she says. ?He kept falling down, he couldn?t walk, he couldn?t stand light and the pain was beyond measure.?

The Secinos went from doctor to doctor to doctor, but no one had any explanations, or any cures.

?They kept telling us it was psychiatric,? says Senico.

During one of Ben?s many doctors? appointments, an acquaintance mentioned Shelia Statlander, a clinical psychologist in Framingham who had cataloged a long list of problems associated with Lyme disease. The Secinos learned that Statlander had attributed almost every detail of her Ben?s decline?the muscle weakness, the loss of language, the overwhelming fatigue?to late-stage Lyme disease.

Since 1975, Lyme disease has been steamrolling through New England leaving a trail of very sick people in its wake. The disease is spread by tiny deer ticks that latch on to unsuspecting human hosts. The ticks dig their jaws into a patch of skin, and as they sip out a blood meal they leave behind a type of bacteria called borrelia burgdorferi, which causes Lyme disease.

People with a fresh case of Lyme disease often come down with a fever, nausea, chills, aches, and in some cases, a distinctive red bull?s-eye rash. Most patients who are diagnosed early take a round of antibiotics and recover. In a perfect world, Lyme disease would be caught and cured every time. But nothing is perfect, and many cases of Lyme disease go undetected.

In cases like Ben?s, a set of far more serious symptoms emerges years after the initial tick bite and infection. Other people experience the first wave of acute symptoms and then, because they were undiagnosed, misdiagnosed or inadequately treated, a gradual wave of debilitating problems such as extreme fatigue, memory loss, intense joint pain and depression begin to take hold. Those patients suffer from chronic Lyme disease, an illness that the established medical community says is not backed up by any scientific evidence.

Many doctors say chronic Lyme disease doesn?t exist, and therefore, it can?t be treated?many, but not all. Ben starting seeing one of a small network of doctors who treat patients with chronic and advanced cases Lyme disease with an aggressive, long-term course of antibiotics. Healing from Lyme disease is a long and hard haul, but the pieces of Ben?s life are starting to fall back into place.

Other people with chronic Lyme disease are fighting their way back to health with different combinations of medications, alternative therapies, diets and exercise. Lyme disease is a complicated illness and patients respond in individual ways to both the bacteria that causes it, and the treatments that cure it.

But what Lyme disease patients, or Lymies, as they sometimes call themselves, do share is a sense that traditional medicine has abandoned them. And as a result, they have been pushed to the forefront of an emerging trend that has patients turning to one another for the help and support that they have been unable to find at doctors? offices and hospitals.

People with chronic Lyme disease are talking, networking, blogging, emailing and sharing their experiences with the disease, doctors and treatments. They are swapping papers on the latest scientific research and debating ideas on the politics of medicine and health care. Thousands of patients all with their own observations and ideas are taking charge of their disease and many are finding ways to heal themselves.


The Lyme library

If you are going to visit Jan Dooley, skip breakfast and lunch.

Dooley is one of those people who throws open her door, welcomes you in with a drink, a snack, a meal, anything. If she doesn?t have what you like, she?ll offer to run out to a nearby restaurant and pick up some take out. The slim, attractive 50-something Worcester resident is one of those persistent givers who is happiest when she?s doing something for someone.

?That?s who she is, who she?s always been,? says a close friend. ?It?s so heart-breaking she would get this disease.?

Dooley was bitten by a tick about 10 years ago while playing 18 holes on a nearby golf course. Her case of Lyme disease went undiagnosed for years.

Initially, the aching, relentless fatigue and deep depression were treated as symptoms of allergies. Doctors eventually suggested she was suffering from chronic fatigue syndrome, Parkinson?s disease, multiple sclerosis and an intense bout with menopause.

?That?s the normal story,? she says. ?We all end up going to see multiple sclerosis specialists, who just dismiss us.?

When her husband died, doctors attributed her aching joints, memory loss and difficulty walking to grief.

?I knew what grieving was and I knew what it means to be in pain,? she says.

One of the biggest problems for people with all stages of Lyme is that the disease is not fully understood. Lyme bacteria not only trumps the body?s immune system, but has developed the ability to hunker down deep in tissue throughout the body and hide from antibiotics. Some studies suggest the bacteria outwits science and medicine by changing shape, while other studies suggest it disguises itself with microbial slime called biofilm.

Despite the nightmare that the Lyme bacteria has caused for the Secino family, both Ben and his mom have a kind of hats-off respect for the germ.

?It?s one of the most intelligent species in the world,? says Ben. ?And it?s a great survivor. It would get the genius award.?

Diane Secino calls it a phenomenal bacteria and adds that it shares a lot in common with syphilis.

?But now that we know what causes Lyme disease, we need to figure out how we diagnose it, and how we treat it,? she says.

And that?s another problem for people with Lyme disease. The tests and medications science has developed to treat it are primitive compared to the savvy and sophisticated bacteria that causes it.

The standard ELISA test used to screen for the disease has a 50 percent accuracy rate. Some doctors defend the test, saying it?s correct at least 60 percent of the time, but that?s still a failing grade in most public schools.

Patients who test positive for Lyme disease are often given a second and more reliable Western blot test while those who test negative are told they don?t have Lyme disease.

Dooley says her diagnoses came with a Western blot test but only after years of being evaluated by doctors who suggested her problem was emotional rather than physical. Those were roller coaster years for Dooley. On some days, the symptoms were almost manageable, but on other days, she couldn?t carry on a casual conversation or walk across her kitchen.

?You could never plan anything because you never knew how you would feel,? she says. ?You don?t buy anything because you don?t know if you?re going to live long enough to use it.?

As Dooley was getting sicker, the grassroots movement of Lyme patients was growing louder and more organized. Her search for answers about her illness led to a network of thousands of others suffering from different combinations of the same basic group of symptoms.

Like Ben, Dooley now sees a Lyme literate doctor who she says understands the nuances of the disease and what strategies can be used to fight it. And while she used to be focused almost exclusively on getting well, today she is determined to help others struggling with the disease and to prevent any new cases by spreading the word and raising public awareness,

?When the Lyme-bubble burst, I was there in the beginning,? says Dooley, who has since become an important link in the Lyme-disease community. A small room in her home has been turned into a Lyme library filled with books, magazines, pamphlets and posters. She passes out booklets and flyers with a lime-colored business card attached that reads, ?Lyme Disease?? and her name, phone number and email address.

Tick Tock

Worcester County reported 420 confirmed cases of Lyme disease in 2009.

Although that number is down slightly from 2008, Dr. Richard Ellison, a professor at UMass Medical School in Worcester who specializes in infectious diseases, says the incidence of Lyme disease in central Massachusetts is definitely on the rise.

?Cases where people experience a circular rash and have symptoms such as arthritis, Bells palsy, heart infections, those cases are well defined and well-documented and they have been going up over the last three to four years,? he says.

And for Ellison there?s not much mystery about the cause.

?There are many more deer in the suburbs, and the more deer means more deer ticks,? he says.

A decade ago, Lyme disease in Massachusetts seemed to be hitting communities on Cape Cod. But according to the Massachusetts Dept. of Public Health, Lyme disease cases have increased fourfold in Worcester and Middlesex counties since 2000.

?What we are seeing now, we didn?t see in the past,? says Ellison. ?More people are being treated for Lyme disease in Worcester. The disease is following the movement of the deer.?

There are more cases in towns such as Holden, Auburn and areas on the outskirts of the city.

The Centers for Disease Control and Prevention and other health organizations tracking Lyme disease have suggested that the actual number of cases of Lyme disease could be 10 times higher than the available statistics.

?The bacterium basically has the capacity to disguise itself,? says Ellison, pointing out that the accuracy of the tests currently available is limited because of that fact.

?Almost like radios, there are strong signals and weak signals with Lyme disease,? says Ellison. ?Like radios, the tests have to be turned up. There are definitely some problems with the test right now.?

And no one knows for certain how many cases have gone undetected because the tiny tick that carries the disease was never noticed and never swatted off. Deer ticks also carry and spread other bacteria that cause different diseases such as human granulocytic anaplasmosis and babesiosis.
Symptoms for those infections can be similar to and mistaken for Lyme disease.

Ellison says a deer tick takes two to three days to finish feeding from its human host, and it?s during the final part of its meal that a tick infected with Lyme will transfer the disease.

The cost of Lyme

Patients who seek alternative treatments for Lyme disease are on their own when it comes to paying the bill.

Shrewsbury resident Sue Sullivan figures she?s spent about $10,000 on tests and treatments. And that might not be so bad if Sullivan was able to work. But Lyme disease cost her the job she had as an occupational therapist for disabled kids. She couldn?t keep up with her students.

Sullivan thinks she got the disease during a camping and hiking trip. The first signs of Lyme were joint pains and overwhelming fatigue. Next came the difficulty concentrating, and the inability to find the right words while speaking.

Sullivan was still working in the school system, and it was almost summer vacation. She figured she would rest up over the break and be fine in September.

But her health kept slipping, and there were frightening moments along the way. One afternoon she decided to walk to the home of a friend who lived nearby.

?I was half way there, and I looked around and realized I didn?t know where I was,? she recalls. She was scared, but she kept walking and eventually found her way.

Then, a week or so later, she had a long lunch with a friend. Everything was fine until she was getting ready to leave and realized she didn?t have her car keys.

?I finally found them in the ignition of the car, which was still running,? she says, adding that the engine was idling for about two hours.

Sullivan had lots of diagnostic tests, including one for Lyme disease.

?It came back positive,? she says. ?But according to the Center for Disease Control, the results weren?t significant enough to require further testing.?

Sullivan eventually found her way to a practitioner who was well versed in Lyme disease.

?She had me fill out a form that listed 40 different symptoms, and rate them for mild to severe. When I was done, she took one look at it and said, ?you have chronic Lyme disease.??

Sullivan says her type of Lyme disease is in her central nervous system. She was taking antibiotics, but paying out of pocket was getting harder and harder.

Things went from bad to worse when her husband was laid off from his job.

?Now we are looking at losing our house,? she says. ?Lyme has taken so much.?

For Sullivan, who is now on an herbal regimen and supplements, faith and a one-day-at-a-time approach has helped her through some of the worst days.

?Wherever this takes us, God will provide,? she says. ?I have already been to hell and back, thanks to Lyme disease.?



Defining the disease

Although some people have a hard time describing how chronic Lyme feels, Jeff, a Lyme patient from Worcester who prefers to be known by just his first name, says it?s not hard to sum up.

?It?s like drinking a case of beer every day for a week and then sitting down in front of a huge set of blaring speakers at a rock concert at 6 a.m.,? he says. ?It?s living hell.?

Jeff, who is now 42, was diagnosed with Lyme disease two years ago, but he figures he?s had it since he was about 20. Initially, fatigue and depression were his major complaints, and he responded well to the medications his doctors prescribed. But as time went on, he started have heart palpitations, nausea, dizziness and night sweats.

?By the summer of 2009, I couldn?t walk,? he recalls. ?I was literally approaching complete disability.?

Two years earlier, he was tested for Lyme disease but the results were negative. Jeff had invested a lot of time researching his symptoms in the hope of finding some explanation.

?I was able to figure out which of my systems were breaking down, but I couldn?t get to the root cause,? he says, adding that he never really thought Lyme disease was to blame.

But by 2009, he was desperate for answers and decided to have another test, but not just at any clinic. Jeff traveled to New Jersey to see Dr. Leslie Fein, an expert on Lyme disease and other tick-borne illnesses.

?Dr. Fein uses more sophisticated diagnostic criteria,? he says. ?She uses several different tests. There?s not one test that gets everything.?


Fein diagnosed Jeff with Lyme disease, and while he finally had an explanation for his illness, he wasn?t sure he believed it. His regular doctors back in Worcester didn?t think much of the diagnoses.

?They told me, ?This woman is scamming you,?? recalls Jeff, who may or may not have mentioned some of the highlights of Fein?s resume such as teaching epidemiology at Columbia University and Mt. Sinai Hospital, her research grants from major pharmaceutical companies, and her role co-authoring government reports on Lyme disease.

And even if he did mention Fein?s credentials, it probably wouldn?t have mattered. The diagnoses and treatment of Lyme disease is a highly controversial topic that has divided the American medical community with the vast majority of doctors on the side opposing Fein and others who treat chronic Lyme with the long-term use of antibiotics.

Most doctors accept the conventional definition of Lyme disease from the Infectious Disease Society of America, IDSA, a prestigious group of academic and research scientists. The ISDA defined Lyme disease as an infection from a tick bite that causes a red ringed rash. According to the ISDA, Lyme disease is cured 95 percent of the time with two to four weeks of antibiotics.

But a lot of people never feel the bite and never see a tick. Lyme goes undetected until it sinks in and starts causing enough aches and pains to trigger a trip to the doctor. But even patients who see a doctor and have a Lyme test have a 50/50 chance of getting a correct diagnosis.

And people who happen to find a tiny deer tick on their body and carefully wrap it up and bring it along to their doctor may not test positive for Lyme. The Secinos found the tick that bit Ben when he was about 18 months old, but ultimately their concerns were dismissed and they were sent home with the assurance that everything was fine.

?You cannot imagine the outrage we will forever feel for being ignored,? says Diane.

Doctors who treat Lyme disease acknowledge those problems. They also believe that the Lyme bacteria is extremely complex, and the disease has scores of different faces. They turn to the one treatment they know has effectively knocked out the Lyme bacteria?aggressive long-term antibiotics.

Dr. Dale Magee, Worcester?s new Health Commissioner, says the debate over treating chronic Lyme disease has become very emotional.

?On one hand you have a lot of people with a lot of nonspecific symptoms who are raising questions,? says Magee. ?Patients are desperate for an explanation; they need the ability to organize their lives.?

But as Magee points out, there is no scientific evidence to support the idea that aggressive regimens of antibiotics successfully cure chronic Lyme disease. And the treatment is painful and risky. Some patients have developed gallstones, while others have walked away with new infections. The medication can also damage a patient?s digestive system.

?Patients end up killing all the good bacteria in their system,? says Magee. And as other research suggests, the overuse of antibiotics can potentially trigger new strains of bacteria immune to the medications that now exists.

?I tend to side with traditional medicine on this, but I also understand we don?t have an explanation for these symptoms,? says Magee.

Still, Magee suggests that chronic Lyme disease patients need to be wary of people promising a cure.

?I think as practitioners of medicine we have to realize we don?t have every answer and that?s very humbling,? he says. ?But by the same token, that doesn?t mean that someone who says they have an answer is right.?

In 2007, the New England Journal of Medicine published a paper that acknowledged that patients suffer from long-term Lyme disease symptoms. But the authors also suggested that doctors are obligated to tell patients that there is no antibiotic to cure them and to instead support them in managing their symptoms.

?Not every disease requires treatment,? says Magee. ?The body is a wonderful organ for healing itself.?

As for divisive debate on chronic Lyme, Magee isn?t sure there?s a cure for that either.

?It gets a little difficult when you have a community that is anti-establishment and anti-science,? he says.


The politics of Lyme

Most chronic Lyme disease patients do not consider themselves anti-science. They welcome new information and evidence. But they do question the ISDA?s motive for slapping a definition on Lyme disease that they say is too narrow and disregards much of what people have learned over the past 20 years.

And they question the IDSA?s motives. According to several different investigations, the majority of IDSA members who worked on the definition of Lyme disease and the guidelines for treatment had a direct or indirect interest in a patent for a Lyme-disease vaccine.

In the world of medical marketing, vaccines are a cash cow. Millions if not billions of dollars in profits are at stake. Chronic Lyme disease advocates have suggested a vaccine for a narrowly defined disease that has as much of a shot at development and Federal Drug Administration approval than a vaccine to protect against a disease with a slew of different symptoms that emerge at different stages.
And the chronic Lyme disease community also questions the IDSA?s objection to the long-term use of antibiotics. If the drugs are effective, then there?s no need for a vaccine.

?It?s a corrupt system with a flawed business model,? says Jeff, who decided to pass on the antibiotics and try alternative therapies such as herbs and other nutrients. ?Health care lacks transparency, and it lacks accountability.?

The IDSA denies all conflict-of-interest allegations, and an independent review board has upheld its definitions and guidelines.

But what angers chronic Lyme disease patients most is the medical establishment?s practice of sanctioning doctors who prescribe long-term antibiotics. In some areas doctors, who buck the IDSA and treat chronic Lyme patients risk losing their licenses.

That?s no longer the case in Massachusetts, thanks in large part to former Groton Rep. Robert Hargraves, who successfully maneuvered a bill through the state legislature that offered protection to doctors who prescribe more than the accepted four-week course of antibiotics for Lyme disease.

?I learned that this is a very, very complex disease,? says Hargraves. ?I met people who have been crippled by Lyme disease and others who are very, very sick. It?s been an educational process and from my observation, doctors are no better than politicians.?

Health officials resisted the bill all along the way, but ultimately Hargraves and Sen. Fred Berry were able to give the legislation the final push it needed to pass. Hargraves says he heard over and over that the treatment is risky.

?My answer to that was, so what. Why not? Isn?t treating cancer risky? Why is Lyme disease any different? Let the patient go to a doctor and let them decide.?

Hargraves acknowledges there are a lot of issues tied up in the Lyme-disease debate, particularly in terms of health-care coverage. But this time around, he took the KISS?or keep it simple, stupid?approach: just protect the doctors and let them take care of their patients.

Although he says it wasn?t entirely clear why health officials wanted to keep chronic Lyme disease patients from receiving medication, Hargraves says, he?s sure of at least one thing.

?There?s a place for people who withhold care from sick people,? he says. ?I would like to pick that place.?

Dooley, the Secinos and all of Worcester?s other Lyme patients would no doubt all be in favor of that.

For Dooley, Hargraves is a Lyme angel. Allowing doctors to prescribe medication for chronic Lyme is a huge worry off her shoulders, and one that allows her to pursue her dream of developing an educational program that teaches Worcester kids about Lyme and how to protect themselves from the disease. Ben has been Dooley?s inspiration for the program.

?What happened to Ben should never happen to another child,? she says.

Dooley has already invested $1,000 in copies of a recent documentary about Lyme disease, and she?s planning how to make it all work.

?It?s my fantasy,? she says. ?And I have my speech ready.?


Out for blood

Jan Dooley knows the damage chronic Lyme disease can do to your health, relationships, career and future. And it still seems to amaze her that all of that chaos comes from a creature roughly the size of a sesame seed.

Deer ticks, the primary carrier of Lyme disease in New England, may be small but they are extremely well designed. Not only do they have body parts that make them highly efficient stalkers, they have a cache of biochemicals that helps them steal a blood meal from a host with little risk of interruption.

?Ticks are actually pretty cool,? says Tze Hei Yong, a professor of insect ecology at Worcester State.

?They have eight legs, so they are not insects. They are more closely related to spiders.?

Although ticks have a creepy spider-like gait, their legs weren?t made for walking. Ticks use most of their legs to latch on to a host as it passes by. Generally they climb to the top of a blade of grass or a low-growing plant and hang on with their third set of legs. The other six legs, which end with tiny hooks for feet, are extended and at the ready. Scientists call the behavior questing.

And ticks know when a potential meal is headed their way. They can smell carbon dioxide and feel vibrations. If you pass close enough to their perch, they swing their legs back and forth hoping to catch a sock, a hem, maybe even a shoelace, anything that gets them on board.

?Deer and white field mice are their typical hosts,? says Yong. ?Humans are an abnormal host, but whenever people venture into their habitat, ticks will react.?

Ticks are natural climbers. If they succeed in catching your sock they will move up your leg, torso or arm until they come across a good feeding site. They favor cozy niches like armpits.

Ticks begin their work by using two serrated scissor-like mouth pieces to open a hole in the skin. They insert a straw-like pump into the hole and take a small sip of fresh pooling blood. Before they start to really feed, they pump their chemical-rich spit into the tiny wound. Tick spit fools the body?s immune system into keep white blood cells away. They prefer red blood. A second chemical helps keep blood flowing and a third cements the tick in place.

It is only toward the end of their meal, which can last up to five days, that a tick will transfer any infections it may be carrying.

?Tick populations are increasing,? says Yong who ties the population bump to land use and management. ?Forests that have been cut down are now being allowed to grow back. And the decrease in hunting and the increase in deer has been a major factor.?

Yong says the other factor that contributes to the increase in the number of ticks is climate change. Ticks are expanding their habitat slowly as temperatures rise.

?It?s kind of creepy to get a tick on you, especially because of Lyme disease, but they are really very interesting,? says Yong. ?Ticks have complex interactions with all other organisms, including humans.?
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