Borrelioosiin sairastuneiden henkilökohtaisia kokemuksia taudista ja sen hoidosta.

Valvojat: Borrelioosiyhdistys, Bb, Jatta1001, Bb, Jatta1001, Borrelioosiyhdistys, Jatta1001, Borrelioosiyhdistys, Bb, Jatta1001, Borrelioosiyhdistys, Bb

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Viestit: 1820
Liittynyt: Ma Tammi 26, 2009 23:13


Viesti Kirjoittaja Bb » Su Helmi 01, 2009 17:53

27-vuotias Doug Posluszny alkoi äkillisesti hikoilla runsaasti ja sai rinta- ja ristiselkäkipuja. Dougin oireet alkoivat nuhaoireilla; kuume, lihaskivut, nivelkivut, heikotus.

Hän meni kiireesti sairaalan ensiapuun. Lääkäreiden mukaan hän on aivan kunnossa pientä nestevajausta lukuun ottamatta. Seuraavien viikkojen aikana hänen terveydentilansa kuitenkin huononi entisestään ja hän joutui jäämään pois töistä. Hänen painonsa alkoi pudota nopeasti, rytmihäiriöitä, aivotulehdus, hengenahdistus; maksa, haima ja perna suurenivat jne. Hänet otettiin toistamiseen sairaalaan uuden voimakkaan rintakipukohtauksen vuoksi. Mitään ei löytynyt tälläkään kertaa. Doug lähetettiin kotiin ja hän oli jo varma että kuolee ennen kuin oireiden aiheuttaja löytyy.

"Lääkärit eivät olleet oireideni suhteen ajan tasalla. En sano että kaikki ovat huonoja, mutta tapaamistani lääkäreistä 90 %:lla tiedot/taidot olivat puutteelliset. Muutamat lääkärit ja hoitajat olivat kuitenkin erittäin potilasystävällisiä. He olivat valmiita kuuntelemaan vaikka eivät tienneetkään mikä oireeni aiheutti. Valitettavasti tällaisia henkilöitä oli vähemmistö."

Onnekseen hän tapasi lääkäri L. A. Feinin joka epäili oireiden aiheuttajan olevan borreliabakteeri. "Oli helpottavaa lukuisten virhediagnoosien ja virhehoitojen jälkeen saada viimein oikea diagnoosi. Monet lääkärit sanoivat oireideni johtuvan 'päästä', stressistä yms. Kun sain tietää diagnoosini, menin testitulosteni kanssa tapaamaan jokaista näistä lääkäreistä ja pyysin heitä tulevaisuudessa suhtautumaan toisin samanlaisia oireita kärsiviä kohtaan. Ohjeeni sairastuneille on, että heidän täytyy itse toimia omina asianajajinaan. Jokainen tuntee oman elimistönsä paremmin kuin kukaan toinen. Jos et voi hyvin, etsi vastausta niin pitkään että löydät sen. Itsepintaisuus pelasti minut."

Tri Lesleyn kommentti Dougin tapauksesta: ... /fein.html

Get the Story on the Episode - Deadly Sore Throat ... /doug.html

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. ... /fein.html

Dr. Lesley Ann Fein is a member of the Pennsylvania Lyme Society, and the Greater Hartford Lyme Disease Support and Action Group. Here, she talks about Doug Posluszny's case and why there are so many other patients who face a similar situation.

Q: Can you explain what Lyme Disease is?

A: It is an infection with a bacteria which causes both infectious manifestations, as well as autoimmune manifestations. If not treated adequately it sets up a chronic fatigue-like syndrome and can mimic many other diseases.

Q: Is there a test for Lyme Disease?

A: This is a diagnosis that is ultimately a clinical one, because tests are not always positive, despite the fact that there are several different tests for it.

Q: How come doctors weren't able to diagnose Doug properly?

A: Doug had a symptom complex which involved multiple organ systems, and the diagnosis was ultimately made by piecing together all the parts of the puzzle.

Q: What made you think that Doug's illness was Lyme Disease?

A: It was a combination of the sequence of events on the history, the progression of the disease, and the final manifestations. And the 20 years of knowledge and experience.

Q: What are some of its symptoms? Does everyone have the same symptoms?

A: This is something we write books about. The symptoms are varied from none at the beginning to flu-like symptoms in the beginning, progressing to neurological, joint, muscle, cardiac and other symptoms 3-6 months after the bite.

Q: How come some people might not know they've been bitten by a tick? Doesn't everyone get a bullseye mark?

A: Less than 50 percent see the rash, because it is in hairy places like the scalp, armpit, groin and is not itchy and often very evanescent.

Q: If you think you might have Lyme Disease, what should you do? How is it treated?

A: Lyme masquerades as so many other illnesses, that I have no specific advice other than keep searching if you get worse without a diagnosis. It is treated with a combination of antibiotics, agents for autoimmune disease, treatments for fibromyalgia and chronic fatigue in the appropriate circumstances, nutritional therapy, physical therapy, etc.

Q: Is there anything else you'd like Discovery Health readers to know about Lyme Disease?

Lyme is a very complex disease if not diagnosed and treated early. There is no "recipe" for treatment or cure. There are inadequate studies at this point to dogmatically state how to treat it properly. A tremendous amount of politics and conflicts of interest in the field render some physicians biased in their public statements about the treatment.

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