VÄÄRIN YMMÄRRETTY, VÄÄRIN DIAGNOSOITU BORRELIOOSI

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Väärinymmärretty, väärin diagnosoitu borrelioosi

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Borrelioosia ei useinkaan tunnisteta

Vuosien ajan Angela King ja Penny Nichols kärsivät voimakkaasta kivusta. Ystävykset kulkivat vuosien ajan lääkäriltä toiselle. Heidän oireilleen annettiin useita mahdollisia diagnooseja ja selityksiä ? borrelioositestit olivat negatiivisia. Joidenkin mukaan kipu oli kuviteltua. Heitä kehotettiin palaamaan vastaanotolle mikäli oireet pahenisivat. Samaan aikaan borrelioosi jatkoi etenemistään. Tämä usein diagnoosia vaille jäävä infektiotauti lähes tuhosi naisten terveyden. Ennen kuin borrelioosidiagnoosiin päästiin, molemmat naiset pelkäsivät kertoa ihmisille kuinka huonosti he todellisuudessa voivat.

Nichols kertoi tienneensä jo v. 1996 että kaikki ei ole kohdallaan. Lääkäri oli todennut Nicholsin sairastavan borrelioosia, mutta se ei hänen mukaansa voi olla mahdollista koska Nichols asui etelävaltiossa jossa borrelioosia ei hänen mukaansa esiinny. Nicholsille tehtiin lukuisia testejä, esim. reuma- ja MS-testejä. Hänellä oli niveltulehduksia, käsien vapinaa, kroonisia hengitystietulehduksia, kuten keuhkoputkentulehdus ja keuhkokuume, sumentumia näkökentässä, mutta silmälääkäri ei havainnut silmissä mitään vikaa. Lopulta hänen tilansa oli niin huono, että hän kaatui jopa tasaisella maalla. Hän jäi viimein sairaslomalle. Vuonna 2004 hänen oireensa pahenivat viikko viikolta. Samana vuonna oireiden aiheuttajaksi paljastui borreliabakteeri.

Angela Kingin ongelmat alkoivat v. 1998 kun hän odotti neljättä lastaan. Hänellä esiintyi päänsärkyä ja ajoittaisia kipukohtauksia nivelissä. "Yritin olla välittämättä oireista." King kävi usean lääkärin vastaanotolla, esim. reumalääkärillä. Hän alkoi lihoa nopeasti ja kävi sen vuoksi myös endokrinologin luona. Lääkäreillä ei ollut aikaa keskittyä hänen ongelmiinsa kokonaisuudessaan eivätkä he sen vuoksi tienneet mikä oireiden syynä saattaisi olla. Vuosien kuluessa Angelan aviomies huolestui vaimonsa tilanteesta ja alkoi siksi etsiä tietoa internetistä. Hän huomasi että vaimon oireet viittasivat borrelioosiin. Seuraavana päivänä Angela kävi borrelioositesteissä ja diagnoosiin päästiin lokakuussa 2002. Kingin mukaan edes osa infektiolääkäreistä ei ottanut huomioon borreliabakteerin mahdollisuutta koska hän ei ollut nähnyt itsessään rengasmaista ihomuutosta.

Molemmat naiset ovat saaneet antibioottihoitoja ja saaneet takaisin terveytensä. Yhdessä vaiheessa Angela pyysi ettei hoitoa lopeteta koska hänen vointinsa on tullut niin hyväksi. Naiset toivovat että ihmiset saisivat oikeaa tietoa borrelioosista. Mitä useammat tuntevat taudin, sitä paremmin he ymmärtävät niitä jotka sairastavat sitä. Osana tiedotuskampanjaa toimii borrelioosista kertova elokuva "Under Our Skin".

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Lyme disease often misunderstood

By Bethany Fuller | Statesville R&L

Published: March 15, 2009

For years, Statesville residents Angela King and Penny Nichols lived with intense pain and a lot of unanswered questions.

The two friends trekked from doctor to doctor for years, listening to the possible diagnosis and explanations for their weird assortment of symptoms ? and negative test results. Some told them the pain was in their heads, they said, and advised them to return when it worsened.

Meanwhile, Lyme disease was slowly crippling their bodies and tormenting King and Nichols ? and their loved ones.

The mental and physical effects of this misunderstood ? and often undiagnosed ? disease brought them to their breaking point, they said.

According to the Centers of Disease Control, the bacterium Borrelia burgdorferi, which is transmitted to humans by the bite of infected blacklegged ticks, causes Lyme disease. Typical symptoms include fever, headache, fatigue and a bull's-eye skin rash called erythema migrans. If left untreated, infection can spread to joints, the heart and the nervous system.

Before being diagnosed, both women said they were afraid to tell people how bad they felt. They worried about the reaction that revelations of their short-term memory loss and agitation, would trigger.

"It got to a point where I couldn't hide it anymore," Nichols said.
Her husband, Doug, and King's husband, Buddy, said they watched the disease change their wives. The women became more confrontational.

"You don't have but one button and it's pushed all the time," Buddy said.

Nichols said she knew something was wrong in 1996 when she had an immediate onset of severe joint pain. She said she immediately went to an urgent care center to find a solution.

"They were dumbfounded and didn't know what was wrong with me," she said. "My blood levels were really strange. The doctor, who was from the North, told me 'If we weren't in the South, I would say you had Lyme disease' ... We were always told Lyme was not in the South."

Nichols was tested for rheumatoid arthritis because of the inflammation in her joints, Multiple Sclerosis for the tremor in her left arm and her chronic respiratory symptoms almost always flare into something like pneumonia or bronchitis.

"I progressed to the point where I was tripping and falling," she said. "I would be on a flat surface and fall down. I was having blurred vision for years, but the doctors told me my eyes were fine."

She finally took a medical leave of absence from Statesville Christian School, where she taught pre-school, in September 2004. Her symptoms became progressively worse every week after that.
"I couldn't make a box of macaroni and cheese," she said.

Her husband said he would have to call her four to five times a day to make sure she was keeping up with her doctors' appointments and other things.

Nichols didn't even consider Lyme disease until a student's parent told her she might want to get tested.

Nichols isn't sure if she was ever tested or if Lyme disease was even a possible diagnosis until November 2004, when she received a clinical diagnosis from the Jemsek Specialty Clinic in Fort Mill, S.C.

King's problems started in 1998 when she was pregnant with her fourth child. She knows she was bitten somewhere in the Brushy Mountains, but is not sure when.

"We are very outdoorsy people," she said.

Around this time, the headaches set in, and she battled a shooting pain in her knees at different times.

"I ignored it for as long as I could," King said. "I remember thinking this couldn't be arthritis because it would go from one knee to the other."

King went to see several doctors in the area. She gained 30 pounds in two months and visited an endocrinologist. She also saw a doctor about rheumatoid arthritis.

"All of whom could not figure out what was wrong with me, nor would they take enough time to listen to my specific complaints," she said.
She eventually went to Wake Forest University Baptist Medical Center for a battery of tests. But she left without the answers she desperately wanted.

As the years went by, Buddy King said he was concerned about what was going on with his wife. One night, he searched the Internet for answers, inputting her most severe symptoms.

Everything pointed to Lyme disease.

The following day she was tested. In October 2002, she received her diagnosis.

Angela King said some of the infectious disease specialists she saw didn't consider Lyme disease because she didn't have a bull's-eye rash or a fever, which are common symptoms.

Nichols said the disease feels like something you can't control. Once the memory loss sets in, you lose control of things you've known for years.

"I can remember a single task at a time," King said. "When I did the dishes, I used to look at my watch and say this should take me 15 minutes. It might take me 40 minutes because I would go in circles."

The treatments they've received have helped, and today both women are maintaining a good quality of life.

At one point, King said she begged her doctors not to stop the antibiotics because she felt so good.

"I felt more myself than I have in years," she said.

However, battling the insurance provider and paying for the treatment has been a hassle for both women.

In 2006, King was informed by Blue Cross Blue Shield that her treatment would no longer be covered because it did not fall with in the Centers for Disease Control's protocol.

Doug Nichols said he tried to make sure his wife's treatment was covered when he was looking for new employment, and had a hard time getting the insurance companies to accept it.

Buddy King said his family is sacrificing to ensure his wife gets the proper treatment. The insurance company charges their family more for Angela King's condition, but it doesn't cover her treatment, he said.

The women hope that people will become more educated about the disease at functions like the Into the Light Gala at the Ballantyne Village Theater in Charlotte on March 20, where the Lyme disease documentary, "Under Our Skin," will be shown.

The pair think the more people know about the disease the better they will understand those who have it.

"You learn to say 'I'm fine,' " Nichols said. "People don't understand the disease."