BORRELIOOSI VÄÄRIN HOIDETTU JA DIAGNOSOITU

[Bb]

Lähettäjä: Soijuv Lähetetty: 14.10.2005 8:39

200 ihmistä kokoontui Bostonissa Julkisen terveydenhuollon komitean kuultavaksi borrelioosia koskevissa asioissa. Borrelioosiin sairastuneet kertoivat komitealle yksi toisensa perään niistä ongelmista joita borrelioosi on heille aiheuttanut, esim. terveydenhuollon kyvyttömyydestä diagnosoida ja hoitaa tautia sekä vakuutusyhtiöiden haluttomuudesta korvata hoitoja. Useat lapset ja nuoret kertoivat komitealle tarinansa.

Borrelioosin oireita on kuvattu Euroopassa jo vuodesta 1883. Kokouksessa esiintyneillä puhujilla oli mitä erilaisempia kroonisia oireita esim. mielialanvaihteluita, muistin menetystä, pahoinvointia, fatiikkia, sydänperäisiä ongelmia jne.

Puhujat vaativat mm. seuraavia muutoksia: lääkäreille lisää kolutusta, jotta he tunnistavat borrelioosin oireet, borrelioosin diagnoosin tulee perustua oireisiin ei laboratoriotutkimuksiin sillä ne ovat tällä hetkellä epäluotettavia. Lisäksi vakuutusyhtiöiden tulee tunnustaa epidemian olemassaolo sekä korvata siitä aiheutuneet hoitokulut.

Puhujien kertomuksia: 1. Janice Urbanskin 9-vuotias poika kertoi äidilleen että hänen ainoa joululahjatoiveensa on että joulupukki tuo hänelle hänen muistinsa takaisin.

2. Doris Gilbergin 42-vuotias tytär elää sairauden vuoksi pääasiassa kotona, hän ei kykene töihin ja on rahaton. Hänellä on nukkumisvaikeuksia ja hän on herkistynyt äänille, valolle ja hajuille

3. Linda Putur ja hänen miehensä sairastuivat borrelioosiin 2002. Mies kuoli 2005 ALS-tyyppisiin oireisiin. Borrelioosin oireet saattavat olla samanlaisia kuin ALS-, Parkinsonin, MS- jne. taudeissa. Useille puhujille oli annettu diagnoosiksi MS-tauti ja sitä oli hoidettu steroideilla. Puhujat olivat asiasta huolissaan sillä steroidit heikentävät immuunijärjestelmän toimintaa ja saattavat siten edesauttaa borrelia bakteerin etenemistä elimistössä. Linda sai hoidoksi antibiootteja jotka auttoivat häntä jonkin aikaa. Nyt hänen oireensa ovat uudelleen voimistumassa.


Salem News
Patients: Lyme disease misdiagnosed, mistreated

By Steve Landwehr
Staff writer

BOSTON ? One by one they sat before a microphone in cavernous Gardner Auditorium at the Statehouse yesterday, struggling to condense decades of misery into three allotted minutes of testimony. Few succeeded.

About 200 people descended on Beacon Hill for the Joint Committee on Public Health's third and final public hearing on Lyme disease. For nearly three hours, from as far away as Florida and Maine, they offered tear-filled testimonials of how their lives were changed forever by the bite of an insect no larger than a poppy seed.

"This is the first year I have been physically able to attend high school because of a long struggle with Lyme disease," said Wenham teenager Colleen Duggan, a senior at Hamilton Wenham Regional High School. "Instead of playing sports, attending classes, joining clubs and going to proms, I have spent my high school years with doctors, visiting nurses, IVs, blood work and home tutors."

Unanimously, speakers laid at least some of the blame for their ailments on a medical community deeply divided on the diagnosis and treatment of Lyme disease and insurance companies they claim are reluctant to pay for those treatments.

The disease, first identified in this country in 1975 in Lyme, Conn., is transmitted to humans and pets by deer ticks. Ticks infected with a bacterium called Borrelia burdorferi pass the disease on when they bite through the skin in search of blood.

Early symptoms of infection include a rash that may be in the shape of a bull's-eye, joint pains, aches and fatigue. That's about all the agreement there is on the disease.

Most doctors and researchers contend that, if caught early enough and properly treated with antibiotics, Lyme disease is easily cured and leaves no long-term symptoms. But a growing number believe the disease is more pernicious, can infect many organs in the body and leave patients with a lifetime of problems.

Those patients yesterday resoundingly claimed a wide range of long-lasting symptoms of the disease, from uncontrolled rage, memory loss and inability to focus to nausea, debilitating fatigue and cardiac problems.

They also said ticks are often infected with other sicknesses they transmit along with Lyme disease, including babesia, a tick-borne illness similar to malaria.

Speakers from Massachusetts also testified they had been unable to find local doctors willing to accept their suggestions they had Lyme disease, and they were forced to make appointments with physicians in Connecticut, New York or Pennsylvania to get relief.

"No one should have to leave Massachusetts to find accurate testing and treatment," said Linda Putur of Hamilton.

Linda

Putur's husband, Clark, died Oct. 15, 2004. The couple became sick in 2002, and in May of 2003 doctors at Massachusetts General Hospital attributed Clark Putur's symptoms to amyotrophic lateral sclerosis, or Lou Gehrig's disease. Putur's death certificate listed his cause of death as both ALS and Lyme disease, Linda Putur said.

"As we approach the one-year anniversary of Clark's death, it is with hope that our story can help create change in this state," she said.

State Rep. Brad Hill, R-Ipswich, was a leader in calling for the legislative hearings. He had two questions for the committee yesterday:

"How can Massachusetts be a leader in the medical world and not be able to diagnose Lyme disease?" he asked. "How can Massachusetts be a leader in the medical world when its citizens are forced to cross state lines to get proper treatment?"

Difficult choices

Putur's assertion that Lyme disease mimics ALS, multiple sclerosis and Parkinson's disease was echoed by numerous speakers. Several testified they'd not only been told they had MS, they'd been given steroids to treat it. There is concern among patients and physicians that steroids, which suppress the immune system, are a dangerous prescription for an infectious illness such as Lyme disease.

Linda Putur's treatment with antibiotics was more successful than her husband's, and her disease went into remission last May. But she said in an interview yesterday she feels symptoms returning, creating a problem other speakers mentioned frequently yesterday.

"Do I go to Pennsylvania and lay out all that cash, on a limited budget?" she said. "That's what I struggle with."

But she's not willing to gamble her children's health.

"We have an appointment tomorrow for blood work in Dr. Jones' office in New Haven, Conn.," Putur said in her testimony. "I am having both children tested."

Dr. Charles Ray Jones was cited by many speakers yesterday as a "hero" in the field of pediatric Lyme disease treatment. It was the stories of children, no matter how old, struggling with the disease that were the most dramatic moments yesterday.

Salem's Doris Gilberg said her 42-year-old daughter is house-bound and bankrupt, unable to sleep at night or remain awake in the day, and hyper-sensitive to light, sound and smells. She and her husband have had to dip into their retirement savings to care for their daughter, she testified.

Janice Urbanski of Boxford said her son Christopher, 9, told her three years ago the only thing he wanted from Santa for Christmas was to get his memory back.

"It breaks your heart," Urbanski said.

And one of the younger speakers summed up what the audience hoped would come out of the public hearings? quick action.

"Please don't leave this problem to my generation to solve," Duggan said. "We will if we have to, but far too many people will become sick and have stories like mine if you don't act now."

What's next?

Patients yesterday told the Joint Committee on Public Health they hope three things will come from their testimony:

* Bay State doctors will be told they must comply with the Centers for Disease Control instruction that Lyme disease should be diagnosed by its symptoms, not blood tests. Speakers said too many doctors won't do that, despite the fact that the most common blood test for Lyme disease is known to be only 60 percent accurate.

* Insurers will be forced to recognize the extent of what some speakers called an "epidemic" and pick up more of the cost of treatment.

* Doctors will get more education about the whole range of symptoms the disease can produce, to ensure earlier diagnosis. Early treatment is the single best way to prevent long-term health problems, they said.

Fall warning

With fall coming on and leaves dropping, several people attending yesterday's hearing said it's vital to keep kids out of leaf piles, a favorite hiding spot for deer ticks. They also underscored the importance of checking the bodies of anyone who has been out in any area where ticks might be present from head to toe.

What is Lyme disease?

* An infection caused by the bacterium Borrelia burdorferi that is passed to humans (and pets) by infected deer ticks. The disease is prevalent in areas with high deer populations, including the North Shore.

* Initial symptoms include a rash, often in the shape of a bull's-eye, at the site of the bite. The rash usually appears one to two weeks after infection and lasts three to five weeks.

* The rash is usually accompanied by flu-like symptoms, including joint pain, chills, fever and fatigue.

* Untreated, the disease can leave patients with severe headaches, arthritis, cardiac abnormalities and mental disorders.

* The symptomatic rash will appear in 90 percent of all infections and is the most conclusive early symptom. Blood tests during the first 30 days of infection are unreliable.

* If caught early, the disease can usually be treated with oral antibiotics. In later stages, intravenous antibiotics may be prescribed.

* If you're going into areas where ticks may be prevalent, spray your skin and clothing with products containing DEET, according to the manufacturer's instructions. Ticks usually attach themselves to legs or feet, then climb upward. The back of the knee, groin, navel, armpit and nape of the neck are favored spots, and the entire body should be checked after returning home.

* Symptoms that would now be diagnosed as Lyme disease first appeared in Europe in 1883. It got its name after it was identified as the source of an outbreak of juvenile arthritis in Lyme, Conn., in 1975.