Borrelioosiin sairastuneiden henkilökohtaisia kokemuksia taudista ja sen hoidosta.

Valvojat: Borrelioosiyhdistys, Bb, Jatta1001

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


Viesti Kirjoittaja Bb » Ke Tammi 28, 2009 16:58

Useilla lapsilla ilmeni neurologisia oireita; päänsärkyä, lihasten nykimistä, lapset eivät kyenneet istumaan paikoillaan ja saattoivat esim. pudota tuolilta tai sängystä. Yksi lapsista, Alex, sai hoidoksi ainoastaan kohtauksia estävää lääkitystä - lääkärien mielestä kohtaukset tulisivat häviämään viimeistään puberteetti-iässä!

Kun Alex sairastui kurkkutulehdukseen ja sai antibioottihoidon, neurologiset oireet helpottivat. Vanhemmat lukivat artikkelin neurologisten oireiden yhteydestä borrelioosiin ja vaativat Alexin testaamista borrelioosin varalta.

Tavanomaiset borrelioositestit, joissa testataan vain 2 eri bakteerikantaa, olivat negatiiviset, jolloin lääkärit pitivät äitiä "hulluna". Lääkärit eivät myöskään huomioineet oireiden ilmaantumisen yhteyttä punkin puremaan.

Vanhemmat teettivät myöhemmin yksityisesti borrelioositestin, jossa tutkittiin 10 eri bakteerikantaa. Tämä testi osoittautui positiiviseksi. Alex on nyt ollut puoli vuotta antibioottihoidolla (Doksisykliini) ja hän on kyennyt palaamaan kouluun.

Samalla alueella kahdeksan lasta on kärsinyt samantapaisista oireista. Alexin vanhemmat kertoivat heille kokemuksestaan oman lapsensa kanssa ja nyt muutkin lapset ovat aloittaneet antibioottihoidot.

Do ticks cause tics?

By Faith Tomei/
Thursday, April 7, 2005

Michelle Holland spoke up at last week's meeting about her concern for her son, Alex, and for eight more children in her neighborhood who have come down with a neurological motor tic. She is convinced that the source of her child's condition stems from a tiny deer tick that transmits Lyme disease.

Holland's son developed a severe tic disorder two years ago when he was in first grade. Suddenly he couldn't sit still. He'd fall from his chair in what appeared to be minor seizures. At night he would fall from his bed for no reason.

Holland brought him to Children's Hospital in Boston, where he stayed for a week while doctors ran test after test. They thought he might have a brain tumor. They prescribed anti-seizure medication. It didn't seem to help the seizures and the violent headaches he suffered. He fell behind in school. Finally doctors told Holland the tics would probably subside with puberty.

About a year after he started having the tics, Alex came down with a case of strep throat and was prescribed the usual dose of antibiotics. Almost immediately Holland saw an improvement in her son's condition. The neurological symptoms seemed to ease.

At about the same time, she read a news story about a professor at Gordon-Conwell Seminary who came down with a neurological disorder that he traced to deer ticks and Lyme disease he contracted when living in Ipswich. The treatment: intensive antibiotic therapy.

She asked doctors to test Alex for Lyme. Four separate tests all came back negative. Doctors dismissed the link between the tick bite and the condition.

"They implied I was crazy," she said.

Holland said the child living across the street had similar symptoms. Other neighbors had children with neurological problems. In one quarter-mile area along the Ipswich River, several children have near-identical problems.

It had to be something in the environment. The river? Mosquitoes? Ticks? "We're leaning heavily in the direction of deer ticks," she said.

Why did the blood tests come out negative? Holland says the labs that physicians in Massachusetts use test for just two strains of disease transmitted by the tick. There are 10 pathogens, however, that affect the victim in different ways, she said

Physicians in Connecticut and New York use a California laboratory that tests for all 10 strains. While it's expensive, it detects links that otherwise are dismissed.

Holland brought Alex to Dr. Bernard Raxlan of Connecticut after reading the article about the Gordon-Conwell professor. The tests showed a tick-borne infection in Alex that creates seizure-like symptoms. He prescribed treatment with the antibiotic Doxicyclene, which is most effective against Lyme disease. For the past six months, Alex has been on this oral antibiotic.

"I have my son back," Holland says. He's stopped taking anti-seizure medication. His headaches and seizures have ceased. He's able to concentrate on school work. He reads. He even plays the piano, which stopped when he became ill, his mother says.

Holland told her friend across the street about her experience. That woman brought her son to the same Connecticut doctor. Then through chance meetings on the street, at church, at school, other parents of children with similar disorders heard of Holland's experience. As a result, the families of eight children from this area have sought similar help out of state.

When the parents asked state Public Health officials to look into the situation, the researcher rejected two of the children in the study because they didn't live in Ipswich. Holland says the two children in question, however, spent summers in their area of town.

She says there are similar cases in Hamilton, Topsfield, Gloucester, Danvers and Peabody.

More education

One way to tracing tick-borne pathogens is to capture ticks from the affected areas and check them for pathogens. This all takes time, however, at a time when children are suffering.

"We've had kids crossing the same floor at Children's Hospital. We've been screaming for attention," Holland says.

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