BORRELIOOSIIN SAIRASTUNEILLE TUKEA

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Liittynyt: Ma Tammi 26, 2009 23:13

BORRELIOOSIIN SAIRASTUNEILLE TUKEA

Viesti Kirjoittaja Bb » Su Helmi 15, 2009 13:04

Lähettäjä: Soijuv Lähetetty: 29.6.2007 11:38

Borrelioosiin sairastuneet ovat muodostaneet tukiryhmän Sarasotan ja Manateen alueella.

Jessica Adkins, 25, muodosti ryhmän viime tammikuussa huomatessaan ettei nivel/lihaskivuista, rytmihäiriöistä, huimauksesta jne. kärsivillä ollut mitään paikkaa mistä löytää tietoa ja tukea. Hänellä itsellään ilmeni kyseisiä oireita v. 2001. Hän ei ole havainnut borrelioosille tyypillistä ihomuutosta itsessään. Vain noin puolet borrelioosiin sairastuneista on havainnut ihomuutoksen.

Useimmat sairastavat tietämättään tautia vuosikausia. Virhediagnoosit ovat tavallisia. Niitä ovat esim. krooninen väsymysoireyhtymä, fibromyalgia, lupus, erilaiset neurologiset sairaudet kuten MS-tauti jne.

Tapaamisten aikana keskustellaan borrelioosista, konferensseista, katsellaan aiheeseen liittyviä DVD:itä ja saadaan tietoa infektiotauteihin tai sisätauteihin erikoistuneilta lääkäreiltä. Useat sairastuneista eivät löydä borrelioosia tuntevaa lääkäriä omalta alueeltaan ja joutuvat sen vuoksi matkustamaan pitkiä matkoja toisiin osavaltioihin. Nancy Orcutt on yksi heistä. Hän tunsi erilaisia kipuja ja fatiikkia vuosien ajan ja hänelle annettiin diagnoosiksi fibromyalgia. Oli itsestään selvää että kysessä oli jotakin vakavampaa ja hänellä diagnosoitiinkin borrelioosi. Borrelioosiryhmästä saamiensa tietojen jälkeen hän matkusti uuden lääkärin vastaanotolle, tavattuaan sitä ennen 10 lääkäriä.

"Olen todella iloinen, sillä ensimmäistä kertaa tapaan jonkun, joka tietää borrelioosista, kertoo 65-vuotias Orcutt. Jokainen ryhmämme jäsen on erittäin avoin ja jakaa toisille jäsenille kaiken tietonsa myös esim. hoidoista - mikä on auttanut heidän kohdallaan ja mikä ei." Kukaan ulkopuolinen ei pysty ymmärtämään miten vaikeasta sairaudesta on kyse. Jopa huoneen päästä päähän käveleminen saattaa toisinaan olla työlästä energianpuutteen vuoksi. Vain sairastuneet ymmärtävät fatiikin ja kipujen syvyyden.

Yleisimmät käytössä olevat testit (Elisa ja Western Blot) eivät ole luotettavia sillä ne testaavat ainoastaan vasta-aineiden muodostumista. "Rapid antigen identification"-testi on testeistä luotettavin sillä siinä testataan itse antigeenia (taudinaiheuttajaa). Borrelioosiin sairastunut lääketieteen professori Carol Fisch on innostunut testistä. Hänen mukaansa lääkäreiden koulutusta tulisi parantaa, jotta tauti diagnosoitaisiin riittävän varhain. Fisch hoitaa omia sydän- ja kognitiivisia oireitaan matala-annoksisella antibiootilla. Debbie McGill, 52, tuntee sairauden vaikeuden. Hän on joutunut taudin vuoksi varhaiseläkkeelle muistihäiriöiden, migreenin, kipujen, huimauksen ja kävelyvaikeuksien vuoksi.



Sufferers of Lyme disease find support

BY STEVE HEISLER CORRESPONDENT

EAST MANATEE -- A difficult-to-diagnose and extremely painful tick-borne illness is the focus of a new support group in the Sarasota and Manatee area.

For those afflicted with Lyme disease, that's especially good news as they cope and try to find doctors who will treat them.

Jessica Adkins, a 25-year-old Parrish resident, began the group in January when she realized there was no support structure for those whose symptoms can include joint pain, muscle aches, a rapid heartbeat and dizziness. Those were the symptoms she began developing in 2001, but she doesn't trace her illness to a specific instance.

"Only 50 percent of the people who suffer from it can recall a Lyme disease rash from a tick bite," said Adkins, who was diagnosed two years ago. "I'm from the 50 percent who don't know how they got it. Most patients go undiagnosed for years."

Misdiagnoses are prevalent as well, she said, and include chronic fatigue syndrome, lupus and neurological disorders such as multiple sclerosis.

To deal with similar issues, she first worked through the Internet and Meetup.com before people suggested in-person gatherings. That led her to get in touch with Tallahassee-based Lifelyme and start the Gulf Coast Lyme Disease Support Group. Monthly meetings have drawn attendees from as far north as Lady Lake and south to Naples.

At meetings, members talk about Lyme disease and conference, watch DVDs and get recommendations about infectious disease or internal medicine specialists. Many sufferers find no "Lyme literate" doctors locally or in Florida and travel to other states for treatment, Adkins said.

Nancy Orcutt of Sarasota is among them. She felt various pains and fatigue for years before being diagnosed with fibromyalgia. It was apparent her condition was more severe, and she was then diagnosed with Lyme disease. Because of contacts made in the group, she will travel to Pittsburgh in early July to meet with a physician after having tried 10 other doctors.

"I'm really happy since it is the first time I will have met with someone who has a much broader knowledge of Lyme disease," Orcutt, 65, said. "Everyone (in the group) is extremely open and shares what they have been doing and what works and doesn't."

Being around others with the illness automatically creates a bond, she said.

"No one (else) understands that getting up sometimes to cross the room is unbelievably difficult because of the energy involved," Orcutt said. "You don't have the energy to sprinkle your favorite plant. It's very real and people who actually have Lyme disease understand the depth of the fatigue and the constancy of pain."
Her husband, Bill, drives her to the meetings. He also takes her to Lake Alfred to Central Florida Research, which has developed a test for identifying the disease, she said.

Common tests to determine its presence are the western blot and the Elisa (Enzyme Linked ImmunoSorbent Assay). While those test an antibody response to the condition, the Rapid Antigen Identification by flow cytometry test actually detects the antigen itself and is considered most reliable.

That test excites Carol Fisch of Sarasota, a Lyme disease sufferer and a doctor herself. An adjunct professor of medicine who formerly taught at the University of Michigan School of Medicine, she wound up with the classic "bull's-eye rash" that predicts the disease's onset. She now has heart issues and cognitive impairment and takes low-dose antibiotics.

Fisch, who stressed the importance of early diagnosis and treatment in improving one's quality of life, said physicians need to become better educated about its cause.

Nymph stages of deer ticks often bear the disease and are carried by birds during their migrations, she said.

"As birds migrate along the Atlantic and the Pacific and the Ohio and the Mississippi, they're stopping along the way," Fisch said. "It ((the bite itself) is the size of a pinhead, horrendously dangerous in what it can do to a person's life, but not easy to see."

In the case of group member Debbie McGill of Venice, the danger of the disease has manifested in memory loss, migraines, dizziness and trouble walking. Now fully disabled at age 52, the former trial attorney in Waterbury, Conn., is not hopeful about finding treatment locally.

When she makes the trip north to East Manatee to attend support group meetings, McGill gets a brief respite from the condition that caused her to seek pain management.

"I think the support group offers to me a similar set of people," she said. "They can relate to how the disease has basically taken away a good part of your previous life."

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