Mysteerinen diagnoosi

Borrelioosiin sairastuneiden henkilökohtaisia kokemuksia taudista ja sen hoidosta.

Valvojat: Bb, Sailairina, maranoma, Tiina

Mysteerinen diagnoosi

ViestiKirjoittaja soijuv » To Helmi 10, 2011 14:42

Mysteerinen diagnoosi: Kova kurkkukipu.

27-vuotias Doug Posluszny oli menossa sovittuun tapaamiseen. Matkalla hän alkoi hikoilla, orientointikyky heikkeni, hän sai rinta- ja ristiselkäkipuja. Hän meni välittömästi ensiapuun. Siellä hänen kerrottiin tarvitsevan lisää nestettä mutta olevan muuten täysin kunnossa. Viikkojen kuluessa erityisesti rintakipukohtaukset uusiutuivat ja hänen piti jättää työt. Dougin oireet aiheutti borrelia-bakteeri.

Kysymyksiä ja vastauksia:

Mitkä olivat ensimmäiset oireet ja miten tauti eteni?
Alussa sain kovan kuumeen, lihas-ja nivelkipuja, yleistä heikotusta. Myöhemmin paino laski voimakkaasti, sain rytmihäiriöitä, hengenahdistusta, aivotulehduksen, maksa ja haima suurenivat. Tulehdusprosessi eteni.

Miten hoitohenkilökunta hoiti sairauttasi?
Lääkärit epäonnistuivat minun tapauksessani pahoin. Antaisin heille D:n (arvoasteikolla D-A, A on paras).En väitä että kaikki lääkärit ovat huonoja mutta omalla kohdallani näin kävi 90%:ssa tapauksia. Noin kourallinen hoitajia ja lääkäreitä toimi potilasystävällisesti. He olivat valmiita kuuntelemaan vaikka eivät tienneetkään mikä oireeni aiheutti.

Miten tapasit tri Feinin?
Tapasin hänet ystäväni kautta. Ystäväni pelasti henkeni. Hänellä ja hänen vaimollaan on Borrelioosi. Oireeni ja se että kukaan ei osannut auttaa minua, herättivät ystäväni huomion. Hän ymmärsi tautini vakavuuden ja se että tarvitsin nopeasti oikeaa hoitoa.

Miltä sinusta tuntui kun sait tietää sairastavasi Borrelioosia?
Olin helpottunut. Lopultakin joku oli kuunnellut minua ja kyennyt huomaamaan kokonaiskuvan. Kuukausien epätietoisuuden, virhediagnoosien ja virhehoitojen jälkeen tilanteeni alkoi selvitä. Monet aiemmista lääkäreistä olivat sitä mieltä että oireeni olivat kuviteltuja, stressiin liittyviä jne. Kun sain selville oikean diagnoosin, menin tapaamaan jokaista näistä lääkäreistä jotta he eivät tekisi samanlaista virhettä kenenkään toisen potilaan kohdalla tulevaisuudessa.

Olitko kuullut Borrelioosista aiemmin?
Minulla oli erittäin vähän tietoa Borrelioosista. Minulla ei ollut aavistustakaan että tauti voi olla näin vakava ja näin pitkäkestoinen. Kuvittelin aiemmin että tauti ei ole merkittävä ja sen hoidoksi riittää parin viikon antibioottikuuri. Tämä tieto on valitettavasti virheellinen.

Mikä on neuvosi muille sairastuneille esim. niille jotka yrittävät saada oman lääkärinsä ymmärtämään mistä on kyse?
Neuvon kaikia olemaan aktiivisia ja toimimaan oman asiansa asiantuntijoina. Sinä itse tunnet elimistösi parhaiten - ei kukaan muu. Jos et voi hyvin, etsi vastauksia ja hoitoa kunnes asia on ratkennut 100%:sti. Sinnikkyys pelasti minun henkeni.

Oletko tavannut muita Borrelioosiin sairastuneita sairastumisesi jälkeen?
Olen tavannut monia. On hämmästyttävää huomata että jokainen tuntee tautiin sairastuneita. Borrelioosi on paljon yleisempi kuin ajatelllaan. Kukaan ei ole immuuni bakteerille.

Miten olet muuttunut sairastumisesi jälkeen?
Olen alkanut toimia aktiivisesti Borrelioosista tiedottamisessa. Olemme perheeni kanssa auttaneet useita Borrelioosiin sairastuneita saamaan oikean diagnoosin ja hoidon. Haluan muuttaa omat negatiiset kokemukseni positiivisiksi. Toivottavasti kokemusteni kertominen auttaa muita ja estää virhediagnoosit heidän kohdalla.

http://health.discovery.com/fansites/my ... uszny.html

Deadly Sore Throat

Doug Posluszny

At 27, Doug Posluszny was having one of the best years of his life: successful, engaged to his longtime girlfriend, Michelle, and in perfect shape. But one day on the way to an appointment, everything changed. He became disoriented, started sweating profusely, and had stabbing pains in his chest and lower back.

Doug rushed to an urgent care facility where the doctors told him that aside from being a little dehydrated, he was fine. But over the next few weeks, Doug quickly grew so sick he had to declare disability. After an especially painful chest pain episode, Doug was admitted into a hospital for a week of extensive testing, but still there were no answers. He returned home convinced he was dying and lost hope he'd ever be diagnosed. But a chance meeting with an old acquaintance led him to Dr. Lesley Ann Fein?who knew exactly what's wrong with him.

What was wrong with Doug was Lyme Disease, a bacterial infection caused by a bite from an infected deer tick. We talked to Doug to find out how he's doing, and to his doctor, Lesley Ann Fein, to get her side of the story.

Q: What were the first signs that something was not right? How did the disease progress?
A: My illness started with flu-like symptoms (104 fever, muscle aches, joint pain and overall weakness). After the initial onset I was not the same?as weeks went by I was getting progressively sicker. I lost a significant amount of weight (40 pounds in a 10-12 week period), my vital organs started to become affected? intermittent irregular heartbeat, Pleurisy causing shortness of breath (lungs), encephalitis (brain inflammation). My liver, spleen and pancreas were also showing as enlarged at one point or another. There was clearly something wrong?most definitely an inflammation process was underway.

Q: How do you feel the medical community handled your case? Were there certain doctors/hospitals or clinics that were more patient-friendly than others?
A: I personally feel that the medical community at large failed me miserably. If I was grading our health care system as a whole I would have to give it a "D" at best. Not to say all physicians are incompetent, but the 90 percent that I had encountered left much to be desired?they seemed to be preoccupied by insurance reimbursements vs. patient care and quality of life. On the other hand there were a handful of physicians and nurses who were more patient friendly than most. They were willing to listen, although they couldn't pinpoint my actual illness. Unfortunately they were the minority.


Q: How did you first meet Dr. Fein?
A: I met Dr Fein through a friend of mine?he literally saved my life! Both he and his daughter had Lyme Disease as well?my symptoms along with the fact no one could help me caught his attention. He knew I was very ill and needed proper treatment sooner than later.

Q: How did you feel when you found out it was Lyme Disease?
A: I felt relieved?finally someone had listened to me and put all the pieces together! After many months of being misdiagnosed, misunderstood and mistreated (on all levels) I was vindicated. Many of these "doctors" were telling me it was in my head, stress-related, etc. I went back to each and every one of them with my positive results to ask them not to shun or dismiss other patients who in the future come to them with similar situations.

Q: Had you heard about Lyme Disease before? In your research, did it ever come up as a possible cause?
A: I had heard very little about Lyme Disease pre illness. I had no idea you could get this sick and the disease can be so debilitating long term. My previous understanding was that Lyme Disease was not a major issue and if you had it, 3-4 weeks of oral antibiotics would resolve the disease. This is, unfortunately, misinformation. During my research, Lyme had come up many times (along with Lupus and Multiple Sclerosis). Being that I spend a lot of time outdoors it was the obvious choice to me?I was actually insisting that I in fact had Lyme.

Q: What is your advice for those who are struggling to get their doctors to hear and understand them?
A: My advice is that you must remain proactive and be your own advocate. You know your body best?if you are not feeling right you must seek answers and treatment until the situation is resolved 100 percent. Persistence and tenacity saved my life.

Q: Have you met other Lyme Disease patients since you were diagnosed?
A: I have met many Lyme patients since I was diagnosed. It amazes me how each and every time I mention Lyme Disease, everyone knows someone who has or has had the disease. Lyme Disease is much more widespread than we can possibly imagine?people from all walks of life are affected. Unfortunately no one is immune.

Q: How have you changed as a result of this ordeal?
A: I have gotten very involved in Lyme Disease education and awareness. My family and I have helped more than 15 individuals get diagnosed and treated in the last two years alone. My goal is to take my negative experience and turn it into a positive by helping others. Hopefully by sharing my story, I can help others avoid being misdiagnosed as I had been for 6-plus months, making my treatment a much longer process.
soijuv
 
Viestit: 3097
Liittynyt: Ke Tammi 21, 2009 14:16

Paluu BORRELIOOSIKOKEMUKSIA ULKOMAILTA

Paikallaolijat

Käyttäjiä lukemassa tätä aluetta: Ei rekisteröityneitä käyttäjiä ja 2 vierailijaa