BRITTI SAI TARTUNNAN SUOMESTA

Borrelioosiin sairastuneiden henkilökohtaisia kokemuksia taudista ja sen hoidosta.

Valvojat:Jatta1001, Borrelioosiyhdistys, Waltari, Bb

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Liittynyt:Ke Tammi 21, 2009 14:16
BRITTI SAI TARTUNNAN SUOMESTA

Viesti Kirjoittaja soijuv » Su Syys 06, 2009 21:44

Lancetissa marraskuussa 2005 julkaistu brittiläinen potilastarina. Tweedie kuvasi v. 2003 jalkansa johon kehittyi borrelioosille tyypillinen ihomuutos. Hän sai pureman ollessaan lomalla Suomessa. Valokuvasta huolimatta diagnoosiin päätyminen vaati 7 eri lääkäriä puolen vuoden ajan. Mitkään laboratorionäytteet, mm. ELISA, eivät tukeneet borelioosidiagnoosia. Western Blot -tutkimuksessa (viikot 12 ja 26) saatiin positiiviset tulokset. Hän sai hoidoksi Doksisykliiniä 200 mg 2 vk ja 300 mg 4 vk. Oireet vähenivät hoidon alussa ja alkoivat jälleen voimistua hoidon lopulla.

Tweedien oireet olivat vaihtelevia; lihaskipuja, väsymystä, rytmihäiriöitä, päänsärkyä, kasvojen tuntohäiriöitä, nivelkipuja, lihasten nykimistä jne. 17 kk sairastumisen jälkeen hän sai 12 vk Doksisykliiniä 300 mg/pv. Tämän jälkeen Amoksisilliinia ja Metronidatsolea. Ensimmäisen kahden viikon aikana osa oireista voimistui ja esim. ihomuutos palasi. Tämä on hänen mukaansa osoitus siitä että bakteeri on edelleen hänen elimistössään.

Tweedien mukaan hänen moninaisiin oireisiinsa ei olisi uskottu mikäli hän ei olisi kuvannut ihomuutosta. Hän uskoo että hänen oireensa olisi luokiteltu psyykkisiksi.

Tweedien mukaan koulutuksessa ja käytännössä borrelioosia ei huomioida/tunneta riittävästi, vasta-ainetutkimukset ovat puutteellisia. Esim. hänen tapauksessaan WB:tä ei olisi normaalisti otettu koska ELISA oli negatiivinen, nykyisten hoitojen (2 - 4 vk) riittävyyttä ei ole todistettu tutkimuksissa ja on olemassa yhä enemmän näyttöä siitä että hoidot ja niiden pituus ovat riittämättömät.

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A personal experience of borreliosis in the UK

November 28 2005

A Tweedie, AHP

In 2003, I photographed a typical erythema migrans (EM) rash that had appeared on my leg while I was in coastal Finland (an area highly endemic for borreliosis). I was unaware of its significance at the time. A month later, I was in Prague and encountered information warning of the risk of borreliosis in the Czech Republic. On returning to the UK, I consulted my GP, presenting the EM photograph and speculating that I had borrelia infection.

Achieving a diagnosis of borreliosis involved seven doctors, in five different services, over a six month period.

I have never had a positive ELISA test result (sampled at 6, 8 and 12 weeks post-infection, using two different laboratories) and had not received antibiotic treatment, which can abrogate the immune response and account for a false negative ELISA (1). My general blood evaluation gave no evidence of infection.

An EM is, in fact, widely described as the hallmark of borreliosis, so serological testing in my case was both unnecessary and misleading.

Ultimately, samples collected at 12 and 26 weeks post-infection gave positive borrelia immunoblot results.

I received Doxycycline treatment - two weeks (200mg per day) at 12 weeks post-infection (actually prior to diagnosis) and four weeks (300mg per day) at 26 weeks post-infection. My symptoms, after an initial flare-up, decreased during treatment and then slowly reappeared after treatment finished.


My symptoms were multi-system, variable and migratory. They included myalgia, malaise, fatigue, headaches, facial paraesthesia, arthralgia, palpitations etc. The only sign was widespread fasciculation.

At seventeen months post-infection, I received twelve weeks of Doxycycline (300mg per day).

Following this, I commenced treatment with Amoxicillin and Metronidazole. In the first two weeks on this treatment I had a flare-up of myalgia and fasciculation and reappearance of part of the original EM rash. I believe this is evidence that live spirochaetes were still present, even after a twelve-week course of relatively high-dose Doxycycline.

This experience raises a number of issues:

? Had I not noticed and photographed the EM, I would probably be causing my doctors intense frustration complaining of numerous symptoms, with very limited signs, and perhaps ending up with a ?psychogenic? label.

? The Health Protection Agency (HPA) reports that they diagnose approximately 300 cases per year and speculate a probable incidence of 1,000 ? 2,000 per year in England and Wales (2). In view of this incidence, is borreliosis given an appropriate level of consideration in medical school and in clinical practice?

? Is the serology testing adequate? The two-tier protocol would have left me undiagnosed, as it dictates that a negative ELISA indicates no need for an immunoblot test. Some physicians are bravely questioning their own laboratory?s reliability regarding borreliosis serology testing (3).

? What is the evidence that two - four weeks treatment is adequate? There is considerable evidence of persistence of infection after greater levels of treatment (4).

I believe that there is a need increased awareness of borreliosis in the UK and a need for questioning of the current protocols regarding this treatable, potentially disabling condition.



References

1. RJ Dattwyler, DJ Volkman, BJ Luft, JJ Halperin, J Thomas, and MG Golightly. Seronegative Lyme disease. Dissociation of specific T- and B-lymphocyte responses to Borrelia burgdorferi. The New England Journal of Medicine; December 1, 1988 Volume 319:1441-1446 Abstract

2. http://www.hpa.org.uk/infections/topics ... is/faq.htm as on 26.11.2005

3. Evans R, Mavin S and Ho-Yen DO. Audit of the laboratory diagnosis of Lyme disease in Scotland. J Med Microbiol. 2005 Dec;54(Pt 12):1139-41. Abstract

4. Oksi J, Marjamäki M, Nikoskelainen J and Viljanen MK.Borrelia burgdorferi detected by culture and PCR in clinical relapse of disseminated Lyme borreliosis. Ann Med 1999; 31: 225-32. Abstract

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