VIRHEELLINEN ALS-TAUTIDIAGNOOSI

Borrelioosiin sairastuneiden henkilökohtaisia kokemuksia taudista ja sen hoidosta.

Valvojat: Bb, Sailairina, maranoma, Tiina

VIRHEELLINEN ALS-TAUTIDIAGNOOSI

ViestiKirjoittaja soijuv » Ke Tammi 27, 2010 14:05

Mercury News 2010:

Kuukausi sitten Bart Fenoliolle kerrottiin hänen sairastavan ALS-tautia ja että hänellä oli n. kaksi kuukautta elinaikaa. Vaimoa kehotettiin viemään puoliso kotiin ja aloittamaan saattohoidot. Fenolio osoitti kuitenkin lääkäreiden olleen väärässä. Hän aloitti antibioottihoidot borrelioosiin ja voi nyt päivä päivältä paremmin.

Tri Stricker kertoo tapaavansa jatkuvasti borrelioosia sairastavia jotka ovat saaneet vääriä Parkinson-, krooninen väsymysoireyhtymä- jne. diagnooseja.Yhtenä päivänä vastaanotolleni tuli nainen jolla oli outoja oireita. Hän oli käynyt Mayo-klinikalla jossa hänelle oli tehty useita testejä. Lääkärit eivät osanneet sanoa muuta kuin että naisella on fibromyalgia. Tri Stricker ihmettelee että lääkärit eivät olleet lainkaan huomioineet sitä tosiasiaa että nainen oli elänyt elämänsä Cape Codissa jossa borreliabakteereja kantavia punkkeja esiintyy paljon. "Miten ihmeessä lääkärit jättivät huomioimatta niin tärkeän yksityiskohdan", Stricker ihmettelee.

Fenolio, 69, tietää tarkkaan miten hän sai borrelioosin. Kuusi vuotta sitten hän oli täysin terve. Hän sai punkinpureman ollessaan koiransa kanssa lammen rannalla. Pureman ympärille tuli ihomuutos. Hän näytti sitä lääkärille mutta koska borrelioositesti oli negatiivinen, asia unohdettiin.

Kolme vuotta myöhemmin hän alkoi oireilla ja neurologi kertoi syynä olevan ALS-taudin.

Fenolion poika kuitenkin muisti isällä olleen aikoinaan punkinpureman. He lähettivät borrelianäytteen laboratorioon. Se oli positiivinen. Borrelioosiin erikoistunut lääkäri kirjoitti Fenoliolle pitkän antibioottilääkityksen.

Taistelu ei kuitenkaan ollut ohi. Vaikka Fenolio alkoi tulla antibioottihoidolla parempaan kuntoon kotikunnan lääkärit halusivat lopettaa hoidon Tähän oli syynä se, että IDSA eli Amerikkalaisten infektiolääkärien yhdistys on sitä mieltä että kroonista borrelioosia ei ole eikä pitkistä antibioottihoidoista ole hyötyä.

Fenolioiden mukaan antibiooteista on ollut selkeä apu. Bart Fenolio on tullut päivä päivältä parempaan kuntoon. Hän on tällä hetkellä vielä hoitolaitoksessa mutta vaimo on toiveikas että hän on parissa kuukaudessa tarpeeksi hyvässä kunnossa tullakseen kotiin.

Vaimo toivoo ettei kukaan muu joutuisi käymään läpi samaa painajaista kuin he ovat joutuneet. "Mikäli minun kerrottaisiin sairastavan ALS-tautia haluaisin totisesti että minulle tehtäisiin ensin borrelioositesti."


http://www.mercurynews.com/columns/ci_1 ... ck_check=1
Fisher: Learning about Lyme disease the hard way

By Patty Fisher

pfisher@mercurynews.com
Posted: 01/21/2010 05:41:13 PM PST
Updated: 01/22/2010 11:34:54 AM PST

Click photo to enlarge
Bart Fenolio with his wife, Heidi, at A Grace Sub-Acute Care... (Nhat V. Meyer, Mercury News)

A month ago, Bart Fenolio was told he had Lou Gehrig's disease and had two months to live. Doctors advised his wife, Heidi, to take him home and call a hospice.

But Fenolio is proving the doctors wrong. Instead of getting worse, he's growing stronger each day, thanks to antibiotics. That's because he doesn't have Lou Gehrig's disease, which isn't curable. He has Lyme disease, which is.

Lyme disease, a bacterial illness spread by ticks, is a poorly understood and strangely controversial illness that has been sweeping the country since it was discovered in Connecticut in the 1970s. While still rare in California, there were 28,921 confirmed cases and 6,277 probable cases in the United States in 2008, nearly twice as many as in 1994.

But Lyme experts suspect there could be 10 times that many. That's because when not treated immediately, Lyme can hide in the body for years and then attack, masquerading as anything from heart disease to arthritis to lupus. Folks might not even know they'd been bitten. And the tests for Lyme disease are notoriously unreliable.

Dr. Raphael Stricker, a Lyme disease expert in San Francisco, regularly sees patients who have been misdiagnosed with chronic fatigue syndrome or Parkinson's disease.

"I saw a new patient the other day who had weird symptoms and had gone to the Mayo Clinic for a complete work-up," Stricker told me. "All they could come up with was fibromyalgia," a syndrome characterized
by chronic pain, fatigue and depression. Stricker learned that the woman had grown up on Cape Cod, where Lyme-carrying ticks are common.

"How could you miss that little tidbit of her history?" he wondered.

Bitten in Morgan Hill

Fenolio, 69, knows just how he contracted the disease. Six years ago a healthy and hearty Fenolio was playing with his dog Cody near a percolation pond in Morgan Hill and was bitten by a tick. When a circular rash appeared around the bite, he went to the doctor. A Lyme test came back negative, and he forgot all about it.

Three years later he retired from the tropical fish store ?Dolphin Pet Village ? he and his sister owned in Campbell. He and his wife moved to San Diego to be near their grandchildren and to enjoy playing lots of golf.

But his golf game slowly deteriorated. He couldn't seem to grip the club. Then, during a vacation in Hawaii, he was too weak to climb out of the pool. His doctor told him he was just getting old. His wife wasn't buying it.

"I said, 'This is not old age. My husband is disintegrating before my eyes, and something's going on.' "

Their Kaiser Permanente internist referred them to a neurologist, who diagnosed Lou Gehrig's disease. Then Fenolio's son remembered the tick bite.

Fighting for treatment

A laboratory that specializes in Lyme tests confirmed his suspicion, and a Lyme specialist in Redwood City prescribed a long-term course of antibiotics. But the ordeal wasn't over. Although Fenolio began to improve on antibiotics, his wife told me, Kaiser doctors wanted to discontinue them.

That's because the Infectious Disease Society of America still recommends against extended treatment using antibiotics, and it casts doubt on whether chronic Lyme disease exists at all, despite thousands of documented cases. Because of the IDSA's position, health insurers generally refuse to cover long-term antibiotics. In most states, though not in California, doctors can lose their licenses just for treating chronic Lyme.

Dr. Sara Cody of the Santa Clara County Health Department cautioned that Lyme disease is rare here, and Fenolio's case doesn't prove that there's rampant misdiagnosis going on.

"What he is experiencing is tragic but not common," she said.

Dr. Jonathan Blum, an infectious disease specialist at Kaiser Permanente Santa Clara, wouldn't discuss Fenolio's case. He confirmed that Kaiser follows the IDSA protocols.
Tri Jonathan Blum on KAiseri alueen infektiolääkäri. Hän vahvistaa alueella noudatettavan IDSA:n näkemyksiä. Hänen mielestään pitkillä antibiooottihoidoilla on vakavia sivuvaikutuksia eikä niitä tule käyttää ellei niistä ole osoitettavissa selkeää hyötyä.

"Long-term antibiotics can cause significant side effects," he said, "and should be used only if they are going to help the patient."

Fenolio's family is convinced that the antibiotics are helping. Today he is in a San Jose nursing home, improving each day. He knows there will be setbacks, but his wife hopes he'll be strong enough to go home in a couple of months.

"I just wouldn't want anyone else to go through this nightmare," she said. "If I had one of those diseases and was told there was no cure, I would definitely want to be tested for Lyme."

Contact Patty Fisher at pfisher@mercurynews.com or 408-920-5852.

# Named for the Connecticut town where it was identified in the 1970s, Lyme disease is carried by ticks, specifically deer ticks and Western black legged ticks.
# To prevent infection, wear long sleeves and trousers when hiking and do frequent tick checks.
# If you are bitten, remove the tick and see a doctor.

# For more about Lyme disease or to find a Lyme disease specialist, go to the International Lyme And Associated Diseases Society at www.ilads.org, or the California Lyme Disease Association at www.lymedisease.org
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