GWEN BARLEE: KANADALAINEN (VAI SUOMALAINEN?) TARINA

Borrelioosiin sairastuneiden henkilökohtaisia kokemuksia taudista ja sen hoidosta.

Valvojat: Borrelioosiyhdistys, Bb, Jatta1001

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Bb
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Liittynyt: Ma Tammi 26, 2009 23:13

GWEN BARLEE: KANADALAINEN (VAI SUOMALAINEN?) TARINA

Viesti Kirjoittaja Bb » Pe Tammi 30, 2009 16:34

Vuonna 1989 sain punkinpureman ja borrelioosin. Aluksi en välittänyt saamastani noin 15 cm:n ihomuutoksesta ja se hävisikin noin viikon kuluessa. Opiskelin ja tein töitä. Vähitellen tulin yhä väsyneemmäksi, sain kovia päänsärkykohtauksia, selkä ja niska kipeytyivät. Hitaasti, vuosien aikana oireeni lisääntyivät eri puolilla elimistöä: niveltulehduksia, kihti, hiustenlähtöä, tinnitus, lihaskipuja, sydänvaivoja, muistiongelmia ja lukuisia muita oireita, jotka tulivat ja menivät ilman mitään selkeää syytä.

Muutin dieettiäni ja liikuntaani terveellisemmäksi ja lopetin juomisen. Näistä oli apua, mutta olin silti kipeä. Inhoan lääkärikäyntejä, mutta jatkuvien hormonaalisten ongelmien (esim. kilpirauhasissa) vuoksi jouduin tapaamaan heitä toistuvasti. Lääkärini lähetti minut useille erikoislääkäreille ja jokainen heistä tarkasteli terveysongelmiani yksittäisinä, erillisinä tapahtumina - ja minä tulin hetki hetkeltä sairaammaksi.

Viimein vuonna 2005 joku mainitsi oireideni kuulostavan borrelioosilta. Aloin etsiä internetistä tietoa asiasta. Löysin Kanadan Borrelioosiyhdistyksen sivut ja luettuani oirelistaa kaikki loksahti paikoilleen. Koko oirekirjoni oli seurausta borreliabakteerista. Menin lääkärini luokse ja kerroin löytäneeni syyn kaikille oireilleni. Hän vastasi, ettei Kanadassa ole borrelioosia! Olin äimistynyt koska olin lukenut borrelioosin olevan yleisimmän ja nopeimmin lisääntyvän hyönteisten levittämän tartuntataudin Pohjois-Amerikassa ja Euroopassa.

Huomasin pian että borrelioosin kohdalla politikoidaan ahkerasti. Tauti ilmenee useiden muiden tautien oireilla, jonka vuoksi sen diagnosointi hankaloituu. Tunnistamattomalla määrällä sellaisia potilaita, joilla on tällä hetkellä diagnooseinaan reuma, MS, krooninen väsymysoireyhtymä, alzheimer, lupus jne. on itseasiassa borreliabakteeri elimistössään. Borrelioositestit ovat epäluotettavia ja hoito ongelmallista. Alkuvaiheessa tauti voidaan saada hallintaan antibiooteilla, mutta myöhemmässä vaiheessa hoito on vaikeampaa ja saattaa kestää kuukausia, jopa vuosia.

Näistä syistä johtuen borrelioosi on Kanadassa "näkymätön" sairaus ja siksi borrelioosiin sairastuneet joutuvat toimimaan omina asianajajinaan pyrkiessään kohti terveyttä. Ennenkuin sain virallisen diagnoosin jouduin käymään yksityislääkäreillä ja maksamaan omista rahoistani Amerikan laboratoriossa tehdyt borrelioositestit!

Kanadalaiset ansaitsevat parempaa. On jo aika että päättäjät parantavat testausmenetelmiä luotettavammiksi, hoitoja tehokkaammiksi, lisäävät koulutusta lääkäreille ja lisäävät tutkimusrahoitusta.



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Lyme disease: the invisible illness in Canada

GWEN BARLEE

Special to Globe and Mail Update

Seventeen years ago, before I was bitten by a tick infected with Lyme disease, I went to the gym several times a week and played tennis and squash regularly. I dragon-boat raced and biked to my studies at the University of British Columbia. I prided myself on being fit, athletic and in control of my life. I almost never went to the doctor and didn't know what it was like to have a headache.

In the summer of 1989, my life changed. Several days after jogging in the woods, I noticed a round rash on my thigh, about 15 centimetres in diameter. I didn't think much about it, other than to point it out to my friends, because of its large size. It wasn't itchy or sore and, after about a week, it went away, so I didn't give it any further thought.

Because I was attending school full-time and working nights at a campus bar, I didn't think it was unusual when I started getting tired, really tired, so tired I started falling asleep in class. I also didn't think it was unusual when I began to get crushing headaches, combined with an extremely sore neck and back, because several months earlier I had been hit by a car while biking home from the university. Slowly though, over the years, I also developed arthritis, gout, hair loss, tinnitus, muscle pain, heart problems, trouble with my memory and dozens of other odd ailments that would wax and wane with no apparent reason.

I changed my diet, modified my exercise habits and stopped drinking.

Although these changes helped, I was still ill. I hate going to doctors, but I started seeing them regularly after developing problems with my thyroid and hormone levels. My doctor sent me to a variety of specialists, and each specialist looked at my problems in isolation, all while I continued to get sicker.

Finally, in 2005, someone mentioned that my symptoms sounded like Lyme disease. I had never heard of Lyme disease, but, by this time, I was
desperate for answers, so I began to research. Eventually, I stumbled across www.canlyme.com. When I found Canlyme, I felt like I had been hit over the head with a two-by-four. The website, home to the Canadian Lyme Disease Foundation, lists 75 common Lyme disease symptoms. I went through the list one by one and discovered I had 51 of the 75 symptoms. Suddenly, everything fell into place. The mysterious rash I had was actually an erythema migrans rash, which occurs in 30 per cent to 50 per cent of Lyme disease patients.

My myriad medical problems were the result of a borrelia infection - a serious tick-borne bacterial infection that causes Lyme disease. In a fluster, I went to my endocrinologist to tell him I had finally figured out what was wrong with me. My euphoria was short-lived when he flatly announced: "We don't have Lyme disease in Canada." I was perplexed because I had done enough research to realize that Lyme disease is one of the fastest-growing infectious diseases in North America and Europe. The United States reports 20,000 cases annually, and the U.S. Centers for Disease Control and Prevention says Lyme disease is likely underreported by six- to 12-fold.

Although ticks that carry Lyme disease are found throughout Canada, only 31 cases of Lyme disease are reported annually -half of which Health Canada deems to have been acquired outside of the country.

I soon realized Lyme disease is a very politicized illness. It is called the "great imitator" for a reason: Its disparate symptoms are similar to many other illnesses, making it difficult to diagnose. Blood tests are notoriously inaccurate, and treatment for Lyme disease is problematic. If diagnosed quickly, Lyme disease can usually be successfully treated with antibiotics; but if diagnosed when the disease has disseminated throughout the body, it can be extremely challenging to eradicate and can take months, if not years, of antibiotic therapy to resolve. Add to the mix recent studies that show Lyme disease occurs in an unknown percentage of multiple sclerosis, Alzheimer's, lupus, rheumatoid arthritis and chronic-fatigue cases and you have a perfect recipe for controversy.

Because of these challenges, Lyme disease remains an invisible illness in Canada. As such, it forces patients to become sleuths and advocates in order to regain their health. For instance, before I was officially diagnosed, I had to identify, and then refer myself to one of just two Lyme disease-specialists in Canada, and pay out of pocket for specialized blood tests in the United States.

Canadians deserve better. It is time our provincial and federal health authorities improved testing, education, treatment, research and funding for this serious tick-borne illness. Ignoring Lyme disease isn't the solution - it is part of the problem.

Gwen Barlee lives in Vancouver.

© Copyright 2006 Bell Globemedia Publishing Inc.

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