MANDY HUGHES: PITKÄ ANTIBIOOTTIKUURI AUTTOI

Borrelioosiin sairastuneiden henkilökohtaisia kokemuksia taudista ja sen hoidosta.

Valvojat: Borrelioosiyhdistys, Bb, Jatta1001

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

MANDY HUGHES: PITKÄ ANTIBIOOTTIKUURI AUTTOI

Viesti Kirjoittaja Bb » Su Helmi 01, 2009 20:22

MENESTYSTARINA MAAILMALTA

Maailman ensimmäisessä borrelioosista kertovassa Under our skin ?elokuvassa ?pääosassa? ollut Mandy Hughes sai merkittävää apua pitkäkestoisesta antibioottihoidosta.

Kolme vuotta sitten Mandy Hughes linkutti, hänellä oli ongelmia tasapainossa, jatkuvaa päänsärkyä ja kipua nivelissä. Tänä päivänä hän kävelee pitkästä aikaa 15 kuukauden antibioottihoidon jälkeen jälleen hyvin omilla jaloillaan ja jokapäiväinen kipu on poissa.

Mukana "vapaata suomennosta" sekä alla olevasta linkistä aukeava CNN-kanavan tekemä reportaasivideo klikkaamalla kohdasta "Watch a report 10-year battle with Lyme disease symptoms" (suom. "Katso raportti 10 vuoden taistelusta borrelioosin oireiden kanssa.").

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KATSO VIDEO ALLA OLEVASTA LINKISTÄ AUKEAVALTA SIVULTA!

http://edition.cnn.com/2008/HEALTH/cond ... index.html

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CNN - NEW YORK

Mandy Hughes: ?Olen järkyttynyt, että sen piti mennä niin pitkälle ennen kuin se huomattiin ja niin paljon vapautta ja paljon aikaa elämästäni oli otettu pois minulta.?

Tänään Hughes sanoo että borrelioosidiagnoosin ja 15 kuukauden antibioottihoidon jälkeen hän edelleen tuntee taudin jälkioireita mutta jokapäiväinen kipu on väistynyt pois.

Mandy Hughes kertoo, että kipu josta hän kärsi yli 10 vuoden ajan johtui borrelioosista.

?Tuntui kirjaimellisesti siltä kuin olisi joutunut vakavaan onnettomuuteen, kuin olisi törmännyt yhteen rekan kanssa ja olisi jäänyt ilman lääketieteellistä hoitoa,? hän sanoo.

Tultuaan punkin puremaksi 19-vuotiaana Hughesille puhkesi nokkosrokko ja hän kärsi kuumeesta sekä niin vakavista vilunväristyksistä, että hän joutui sairaalaan. Hänellä diagnosoitiin borrelioosi ja hänet lähetettiin kotiin kahden viikon antibioottikuurin (tetrasykliini) kanssa. Hän vaikutti parantuneen.

Mutta vuosien kuluessa borrelioosin oireet palasivat; rampauttavat nivelkivut, lihaskouristukset, päänsäryt ja kasvohermohalvaus. Hän tapasi 15 lääkäriä, silti he olivat kykenemättömiä tekemään diagnoosia. Useat ajattelivat että hänellä oli MS-tauti. Toiset tiesivät että hän oli sairas, mutta he eivät tienneet miksi. Borrelioosi jätettiin pois laskuista.

?Ehkä se on psyykkistä - meillä ei todellakaan ole selitystä,? he kertoivat Hughesille. ?Sinun testistuloksesi ovat kunnossa, Mandy.?

Muisto eräällä lääkärillä käynnistä on pysynyt hänen mielessään tähän päivään asti. Hän meni lääkärin luokse kertomansa mukaan niin vakavien nivelkipujen kanssa, että hänen kätensä vääntyivät halvaustilan kaltaiseen asentoon. Silti lääkäri vaikutti kärsimättömältä hänen kanssaan.

?Olet ilmeisen viehättävä nainen ja yrität vain saada huomiota,? hän toisti lääkärin sanoneen.

Vuonna 2005 Hughes meni tapaamaan joidenkin potilaiden suosittelemaa borrelioosiin erikoistunutta lääkäriä, joka oli halukas diagnosoimaan hänellä kroonisen borrelioosin sekä määräämään pitkäkestoisen kuurin sekä suonensisäisiä että suun kautta otettavia antibiotteja.

Kolmessa kuukaudessa hän alkoi voida paremmin ja 15 kuukauden jälkeen hän oli taas takaisin omilla jaloillaan, mutta joutui äkillisesti keskeyttämään hoidon, kun lääkäri joutui syytteeseen vakuutusyhtiön toimesta ja lakkasi vastaanottamasta potilaita.


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(Voiko tässä olla enää kysymys potilaan parhaasta? Ei, vaan raha ratkaisee!) =(
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Potilaiden puolestapuhujat kritisoivat IDSA:a, joka kieltäytyy suosittelemasta pidempää kuin kuukauden mittaista antibioottikuuria borrelioosin hoitoon. He kertovat, että vakuutusyhtiöt käyttävät näitä suuntaviivoja kieltäytyäkseen maksamasta pitkäkestoisia antibioottihoitoja.

Yksi IDSA:n arvostelija, Connecticatin oikeusministeri Richard Blumenthal, joka johti suuntaviivaprosessin epäluottamustutkimuksia, kertoo että paneeli jätti huomioimatta tai minimalisoi muita lääketieteellisiä asiantuntijalausuntoja kroonisen borrelioosin suhteen.

?paneelin jäsenet konsultoivat vakuutusyhtiötä ja ainakin yhdellä oli patentti borrelioosin hoitoon.

CDC raportoi noin 20.000 uutta borrelioositapausta vuodessa ja luvut ovat kaksinkertaistuneet vuodesta 1991 vuoteen 2005 mennessä. ?CDC sanoo, että todellinen luku voi olla kolme tai kymmenen kertaa suurempi.

?Näkemykseni on, että meillä on borrelioosiepidemia,? sanoo Daniel Cameron, Kansainvälisen Borrelioosijärjestön puheenjohtaja.

??on suuri joukko potilaita, joilla on kroonisia, jatkuvia oireita.

Kysymys kuuluu, miksi heillä on nuo oireet??



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Don't Miss: Investigation into Lyme disease guidelines

http://www.ct.gov/ag/cwp/view.asp?A=2795&Q=414284


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NEW YORK -- For more than 10 years, Mandy Hughes drifted in an out of what she calls the horrible, debilitating pain of Lyme disease.
Mandy Hughes says the pain she suffered for more than 10 years was due to Lyme disease.

"It literally feels like you got into a severe accident, like you were hit by a Mack truck and you were allowed no medical attention," she says.
After being bitten by a tick at 19, Hughes broke out in hives and suffered fever and chills so severe that she had to be hospitalized. She was diagnosed with Lyme disease and was sent home with two weeks' worth of the antibiotic tetracycline. She seemed to be cured.

But over the years, the Lyme symptoms flared back -- crippling joint pain, muscle spasms, headaches and facial paralysis. She visited 15 doctors, yet they were unable to arrive at a diagnosis. Several thought she had multiple sclerosis. Others knew she was sick but didn't know why. Lyme had been ruled out.

"Maybe it's psychological -- we don't really have an explanation," they told Hughes. "Your tests are coming back fine, Mandy." Watch a report on a 10-year battle with Lyme disease symptoms »

The memory of one doctor's visit stays with her to this day. She went to see him with joint pain so severe, she said, her hands were curled into a palsy-like position. Yet the doctor seemed impatient with her.

"You're obviously an attractive woman, and you're just trying to get attention," she recalls him saying.

In 2005, Hughes went to see what some patients refer to as a "Lyme-literate" doctor -- one willing to diagnose chronic Lyme disease and prescribe a long-term regimen of intravenous as well as oral antibiotics.
Within three months, she began to feel better. After 15 months, she was back on her feet, but had to abruptly halt treatment when her doctor was sued by an insurance company and stopped seeing patients.

Hughes' story is featured in a new documentary called "Under Our Skin," which takes a look at the leaders of the Infectious Diseases Society of America, a national medical group that represents health care professionals who specialize in infectious diseases. The society's purpose, according to its Web site, is to improve health care in areas related to such diseases.

In particular, the documentary takes aim at the 14-member panel that wrote the 2006 Lyme disease treatment guidelines. The guidelines question the existence of chronic Lyme disease and claim the post-treatment symptoms of some patients appear to be "more related to the aches and pains of daily living rather than to either Lyme disease or a tickborne coinfection."

The guidelines list specific criteria for diagnosing Lyme -- such as an obvious tick bite, a characteristic bull's-eye rash at the site of the bite, facial paralysis and a positive blood test.

Don't Miss

Investigation into Lyme disease guidelines

IDSA on Lyme disease investigation

Yet some Lyme specialists say many patients experiencing symptoms do not see or remember a tick bite. Only 70 to 80 percent get the rash at all, according to the Centers for Disease Control and Prevention. The longer the disease goes undiagnosed, the harder it is to treat, some doctors say.

"The disability associated with Lyme disease is worse than the disability that you might see with someone after a heartattack," said Brian Fallon, director of the Lyme and Tick-Borne Diseases Research Center at Columbia University Medical Center in New York.

Patient advocates criticize the IDSA for recommending no more than a month's worth of antibiotics to treat Lyme. They say insurance companies use the guidelines to deny payment for long-term antibiotic therapy.

But the IDSA says there are inherent risks from such treatment, including localized infection from the IV line and the creation of antibiotic-resistant bacteria.

One IDSA critic, Connecticut Attorney General Richard Blumenthal, conducted an antitrust investigation of the guideline process, saying the panel ignored or minimized other medical opinions regarding chronic Lyme disease. Blumenthal said the process was tainted by conflict of interest because members of the panel consulted for insurance companies and at least one had a patent for a Lyme disease treatment.

Gary Wormser, chief of infectious diseases at New York Medical College and one of the guidelines' authors, denies those allegations, calling them "preposterous."

"What we did recommend was not treating with unsafe or prolonged courses of antibiotic therapy," Wormser said.

In a settlement with Blumenthal, the IDSA agreed to reassess its 2006 guidelines with the assistance of an outside arbiter.The heart of the debate is whether patients actually have Lyme disease, or simply symptoms that are mistaken for Lyme disease.

"The problem is that the majority of patients that carry the diagnosis of chronic Lyme disease actually have the same kinds of symptoms: fatigue, musculoskeletal pain, sometimes brain fog. ... The majority of such patients actually don't have any evidence of ever having had Lyme disease." Wormser said.

There's a lot at stake. The CDC reports approximately 20,000 new cases of Lyme disease a year, with the number doubling from 1991 to 2005. Factoring in underreported cases, the CDC says the actual number could be three to 10 times higher.

"We have an epidemic of Lyme disease," said Daniel Cameron, president of the International Lyme and Associated Diseases Society, which rejects the IDSA guidelines and says the chronic form of the disease may be prevalent in up to 62 percent of the population in areas where Lyme disease is endemic.

Fallon says standard blood tests fail to detect the Lyme infection in 20 to 30 percent of patients.

"Most reasonable academic physicians throughout the United States would acknowledge that there's a large number of patients out there who do have chronic, persistent symptoms. The question is, why do they have those symptoms?" he says.
Viimeksi muokannut Bb, Pe Huhti 16, 2010 18:02. Yhteensä muokattu 2 kertaa.

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

Viesti Kirjoittaja Bb » Su Helmi 01, 2009 20:24

Haastattelussa: Mandy & Andy


(Broadcast on ABC's DC Area affiliate on June 16, 2008. Interviews with Andy Abrahams Wilson and Mandy Hughes)

http://www.youtube.com/watch?v=Pd_C6e2N ... 5E&index=2

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

Viesti Kirjoittaja Bb » Su Helmi 01, 2009 21:35

Mandy taisteli borreliabakteerin aiheuttamien voimakkaiden, invalidisoivien kipujen kanssa yli 10 vuoden ajan. Hän sairastui 19-vuotiaana; kuumetta, vilunväristyksiä jne. Hänellä todettiin borrelioosi. Hän sai sairaalasta kahden viikon antibioottikuurin (tetrasykliini). Vuosien kuluessa oireet kuitenkin palasivat: lihaskouristuksia, nivelkipuja, päänsärkyä, kasvohalvaus jne. Borrelioositestit olivat negatiivisia.

Lääkärit eivät kyenneet diagnosoimaan tautia. Monien lääkärien mielestä Mandyllä oli MS-tauti. Toiset eivät osanneet kertoa diagnoosia, mutta borrelioosia hänellä ei heidän mukaansa kuitenkaan ollut. Oireet saattoivat heidän mukaansa olla psyykkistä! Erään lääkärikäynnin Mandy muistaa erityisen selkeästi. Hänellä oli silloin niin voimakkaita nivelkipuja että hänen kätensä kouristuivat sisäänpäin. Lääkärin kommentti: "Olet erittäin viehättävä nainen ja yrität selvästi saada vain lisää huomiota."

Tri Fallonin mukaan borrelioositestit eivät havaitse kaikkia borrelioositapauksia. Ne ovat virheellisesti negatiiviset n. 20 - 30 %:ssa tapauksista. Suurin osa järkevistä akateemisesti kolutetuista lääkäreistä USA:ssa myöntää, että lukuisilla potilailla on jatkuvia kroonisia oireita. Kysymys kuuluukin: "Miksi heillä on jatkuvia oireita"?

Artikkelin lopussa IDSA:n lääkäri Wormser kertoo mielipiteistään eli lyhyt antibioottihoito riittää, kroonista borrelioosia ei ole. Wormser saapuu myös Suomeen esittelemään näkemyksiään ja IDSA:n hoitosuosituksia vastaan esitettyjä syytteitä. Hän käyntinsä täällä voi johtaa hoitojen saannin vaikeutumiseen entisestään ja potilaiden oireiden entistä laajempaan psykologisointiin.



By Ronni Berke

CNN NEW YORK -- For more than 10 years, Mandy Hughes drifted in an out of what she calls the horrible, debilitating pain of Lyme disease. Mandy Hughes says the pain she suffered for more than 10 years was due to Lyme disease.

"It literally feels like you got into a severe accident, like you were hit by a Mack truck and you were allowed no medical attention," she says.

After being bitten by a tick at 19, Hughes broke out in hives and suffered fever and chills so severe that she had to be hospitalized. She was diagnosed with Lyme disease and was sent home with two weeks' worth of the antibiotic tetracycline. She seemed to be cured. But over the years, the Lyme symptoms flared back -- crippling joint pain, muscle spasms, headaches and facial paralysis. She visited 15 doctors, yet they were unable to arrive at a diagnosis. Several thought she had multiple sclerosis. Others knew she was sick but didn't know why. Lyme had been ruled out.

"Maybe it's psychological -- we don't really have an explanation," they told Hughes. "Your tests are coming back fine, Mandy." Video Watch a report on a 10-year battle with Lyme disease symptoms »

The memory of one doctor's visit stays with her to this day. She went to see him with joint pain so severe, she said, her hands were curled into a palsy-like position. Yet the doctor seemed impatient with her.

"You're obviously an attractive woman, and you're just trying to get attention," she recalls him saying. In 2005, Hughes went to see what some patients refer to as a "Lyme-literate" doctor -- one willing to diagnose chronic Lyme disease and prescribe a long-term regimen of intravenous as well as oral antibiotics.

Within three months, she began to feel better. After 15 months, she was back on her feet, but had to abruptly halt treatment when her doctor was sued by an insurance company and stopped seeing patients. Learn more about Lyme disease »

Hughes' story is featured in a new documentary called "Under Our Skin," which takes a look at the leaders of the Infectious Diseases Society of America, a national medical group that represents health care professionals who specialize in infectious diseases. The society's purpose, according to its Web site, is to improve health care in areas related to such diseases.

In particular, the documentary takes aim at the 14-member panel that wrote the 2006 Lyme disease treatment guidelines. The guidelines question the existence of chronic Lyme disease and claim the post-treatment symptoms of some patients appear to be "more related to the aches and pains of daily living rather than to either Lyme disease or a tickborne coinfection."

The guidelines list specific criteria for diagnosing Lyme -- such as an obvious tick bite, a characteristic bull's-eye rash at the site of the bite, facial paralysis and a positive blood test.

Don't Miss

* Investigation into Lyme disease guidelines
* IDSA on Lyme disease investigation

Yet some Lyme specialists say many patients experiencing symptoms do not see or remember a tick bite. Only 70 to 80 percent get the rash at all, according to the Centers for Disease Control and Prevention.

The longer the disease goes undiagnosed, the harder it is to treat, some doctors say.

"The disability associated with Lyme disease is worse than the disability that you might see with someone after a heart attack," said Brian Fallon, director of the Lyme and Tick-Borne Diseases Research Center at Columbia University Medical Center in New York.

Patient advocates criticize the IDSA for recommending no more than a month's worth of antibiotics to treat Lyme. They say insurance companies use the guidelines to deny payment for long-term antibiotic therapy.

But the IDSA says there are inherent risks from such treatment, including localized infection from the IV line and the creation of antibiotic-resistant bacteria.

One IDSA critic, Connecticut Attorney General Richard Blumenthal, conducted an antitrust investigation of the guideline process, saying the panel ignored or minimized other medical opinions regarding chronic Lyme disease. Blumenthal said the process was tainted by conflict of interest because members of the panel consulted for insurance companies and at least one had a patent for a Lyme disease treatment.

Health Library

* MayoClinic.com: Lyme disease

Gary Wormser, chief of infectious diseases at New York Medical College and one of the guidelines' authors, denies those allegations, calling them "preposterous."

"What we did recommend was not treating with unsafe or prolonged courses of antibiotic therapy," Wormser said.

In a settlement with Blumenthal, the IDSA agreed to reassess its 2006 guidelines with the assistance of an outside arbiter.

The heart of the debate is whether patients actually have Lyme disease, or simply symptoms that are mistaken for Lyme disease.

"The problem is that the majority of patients that carry the diagnosis of chronic Lyme disease actually have the same kinds of symptoms: fatigue, musculoskeletal pain, sometimes brain fog. ... The majority of such patients actually don't have any evidence of ever having had Lyme disease." Wormser said.

There's a lot at stake. The CDC reports approximately 20,000 new cases of Lyme disease a year, with the number doubling from 1991 to 2005. Factoring in underreported cases, the CDC says the actual number could be three to 10 times higher.

"We have an epidemic of Lyme disease," said Daniel Cameron, president of the International Lyme and Associated Diseases Society, which rejects the IDSA guidelines and says the chronic form of the disease may be prevalent in up to 62 percent of the population in areas where Lyme disease is endemic.
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Fallon says standard blood tests fail to detect the Lyme infection in 20 to 30 percent of patients. "Most reasonable academic physicians throughout the United States would acknowledge that there's a large number of patients out there who do have chronic, persistent symptoms. The question is, why do they have those symptoms?" he says.
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