ERIÄVÄT NÄKEMYKSET HOIDOSTA JATKUVAT

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Lähettäjä: iippo Lähetetty: 5.10.2006 12:09

Nämä Steeren kaltaiset lääkärithän voisivat hyvin todistaa näkemyksensä oikeiksi ottamalla vapaaehtoisesti borreliabakteereita elimistöönsä ja aloittaa nämä tehokkaat parin viikon mittaiset antibioottihoitonsa vaikka vuoden kuluttua kun bakteeri on kunnolla 'kotiutunut'. Kysytään sitten mielipidettä uudestaan.

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Lähettäjä: Soijuv Lähetetty: 10.10.2006 9:54

Kritiikkiä IDSA:n ohjeita kohtaan esitetään jatkuvasti. Seuraavan kannanoton mukaan: "Ohjeiden ansiosta Borrelioosin tehoton hoitokäytäntö jatkuu. Jo 25 v Borrelioosin on kerrottu olevan infektiosairaus, jossa esiintyy ihomuutos, turvonnut polvi ja koholla oleva vasta-ainetesti ELISA. Näin tapahtuu todellisuudessa vain alle 10%:ssa Borrelioositapauksia.. Useat sairastuneet ovat saaneet merkittävää apua pitkistä antibioottihoidoista."



October 9, 2006

New Lyme guidelines ill-serve sufferers
The Infectious Disease Society of America (IDSA) has issued new guidelines for the diagnosis and treatment of Lyme disease. The guidelines are torturously and unnecessarily complex, and unquestioningly will lead to the continuing undertreatment and nontreatment of Lyme.
This, after 25 years of ''a bull's-eye rash and swollen knees'' as the diagnostic standard, when it in fact accounted for less than 10 percent of initial presentations. Coupled with a blood test, the ELISA, shown to be little better than chance, we are left here on the Cape and Islands with hundreds of people with chronic Lyme and other debilitating syndromes of ''mysterious'' origin, such as chronic fatigue syndrome and fibromyalgia.
The IDSA further eschews long-term antibiotic treatment as useful with chronic Lyme. This is based entirely on one flawed study where antibiotic treatment was over a relatively short term, and the experimental group was biased by a shared genetic profile.
Many of us in the Lyme patient community can testify to the efficacy of long-term antibiotic treatment.
In a Lyme-endemic area, the public deserves far better than what the IDSA has given us.
Harold Roy
Brewster

John F. Coughlan, President
Massachusetts Lyme Disease Awareness Assoc.
Cape Cod, MA
MassLyme@aol.com
Ph: (508) 564-7445

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Lähettäjä: Soijuv Lähetetty: 12.10.2006 8:36

Tri R.Stricker ILADS:n puheenjohtaja keskustelee/väittelee IDSA:n tri P. Auwaerterin kanssa Borrelioosin hoidosta IDSA:n julkaisemien uusien ohjeiden johdosta. Keskustelu tapahtuu tänään! Aiheeena: Onko pitkäaikaisesta antibioottihoidosta hyötyä kroonisen Borrelioosin hoidossa? ILADS:n ja IDSA:n käsitykset poikkeavat toisistaan suuresti. IDSA:n jäsenten mielestä lyhyt antibioottihoito tuhoaa bakteerin ja muita hoitoja ei tarvita.

Milloinkahan Suomeen/Euroopan maihin saadaan terveydenhuollon ammattilaisia, jotka ovat valmiita lukemaan tutkimuksia laajasti, näkemään taudin koko kuvan ja uskaltavat ilmaista valtavirrasta poikkeavia käsityksiä Borrelioosin diagnosoinnista ja hoidosta - puhumattakaan toimimaan asian puolesta? Joissakin Euroopan maissa esim. Saksassa, jonkinlaista toimintaa on esim. laboratoriodiagnostiikassa, Unkarissa annetaan yhdistelmäantibioottihoitoja jne.

Controversies in Lyme Disease Treatment and Diagnosis

to be Debated at Infectious Diseases Society of America (IDSA) Symposium International Lyme and Associated Diseases Society (ILADS) President Featured

WHAT:

Medical experts agree about the importance of diagnosing Lyme disease early enough to obtain the best treatment outcome and most favorable prognosis, but some ask the question, Does Long-Term Antibiotic Therapy Improve Persistent Symptoms Associated with Lyme Disease? This controversial topic will be debated at a symposium at this year´s IDSA meeting in Toronto on Thursday October 12th.

WHERE:

Metro Toronto Convention Center, Room 801 A-B

Thursday, October 12, 2006, 2pm-4pm symposium, with debate beginning at 3pm



WHY: Clinical Practice guidelines issued this month by the Infectious Diseases Society of America (IDSA) raise serious questions about Lyme disease diagnosis and treatment options for patients and practitioners. The International Lyme and Associated Disease Society (ILADS), a non-profit, international multidisciplinary medical society dedicated to the diagnosis and proper treatment of Lyme disease, has its own set of guidelines that differ dramatically from IDSA guidelines. More information at www.ilads.org.

WHO:

Dr. Raphael Stricker, ILADS president, will debate Dr. Paul Auwaerter of Johns Hopkins University School of Medicine. Dr. Stricker is Medical Director of Union Square Medical Associates, a multispecialty medical practice in San Francisco where he treats more than 900 Lyme disease patients.



CONTACT:

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Lähettäjä: Soijuv Lähetetty: 17.11.2006 8:27

30.11.2006 New Yorkissa järjestetään mielenosoitus IDSA:n hoitosuosituksia vastaan.

Esitteen mukaan IDSA:n hoitosuositus

- varmistaa sen, että diagnoosia ja hoitoja ei saa ajoissa

- Antaa vakuutusyhtiöille mahdollisuuden evätä hoitojen korvaamisen

- Estää lääkäreiden mahdollisuudet hoitaa sairastuneita

Infectious Diseases Society of America
Has Declared War on Patients

FIGHT BACK
LYME RIGHTS PROTEST

TAKE A STAND AGAINST THE

IDSA NEW Lyme Disease Guidelines /
Dr. Gary Wormser (lead author), Westchester Medical Center

Thursday November 30th 12 - 3 PM

Westchester Medical Center (South entrance) ~ Valhalla, NY

(No parking at protest site - shuttle bus location, Comfort Inn, Hawthorne NY)

New IDSA Guidelines:

TICK IMAGE Guarantee people will not be diagnosed & treated in time

* Empower insurance companies to deny treatment coverage

* Threaten your physician?s ability to treat

Need everyone there by noon! - Shuttle bus to start at 11 AM

For Important Information

Go to www.Lymenews.org for directions, hotel info, bus routes, shuttle bus service to protest site.
Please RSVP to ensure enough parking spaces ? bring food & water, umbrellas, chairs, signs

For questions please contact Lia at Lmmccabe@hvc.rr.com or (914) 474-2679
11-14-06

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Lähettäjä: Soijuv Lähetetty: 19.11.2006 20:00

Upton Sinclairin mietelause: "On erittäin vaikeaa saada ihmistä ymmärtämään jotakin asiaa, mikäli hänen palkkansa riippuu siitä, ettei hän ymmärrä sitä."

Lause pätee valitettavan usein myös terveydenhuollon ammattilaisiin. Monien Borrelioosiin sairastuneiden kokemuksena on, että lääkärin ymmärrys Borrelioosia kohtaan on selkeästi lisääntynyt sen jälkeen kun lääkäri on jäänyt eläkkeelle.

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Lähettäjä: Soijuv Lähetetty: 20.11.2006 14:42

Kanadan Borrelioosijärjestö (Canlyme) on nyt ottanut kantaa IDSA:n hoitosuosituksiin. Canlymen mukaan IDSA:n suositukset ovat erittäin kapeakatseiset. Niissä on systemaattisesti jätetty huomioimatta kaikki tutkimukset jotka eivät edusta heidän näkökulmaansa asiasta.
Lyme disease diagnosis in review
Filed under: News; Author: News Writer; Posted: November 14, 2006 at 12:00 am;

061114tick.jpg
BE CAREFUL: You don?t want this insect in your blood system. PHOTO COURTESY OF STEVE FORD ELLIOTT

by Hilary Onas
News Writer

Researchers are currently reviewing a study hoping to improve Lyme disease (LD) education and awareness.

LD is an infectious tick-borne disease caused by a bacterial infection with a spirochete from Borrelia burgdorferi. LD can affect the brain, central nervous system, autonomic nervous system, cardiovascular, digestive and respiratory systems.

Joann Bone, high school student and patient of doctor and former Professor Emeritus Ernie Murakami, was bitten by a tick while hiking in Kamloops last March. She developed LD symptoms within two days.

Bone visited numerous doctors, all of whom assured her that she could not have contracted LD because the disease does not occur in Canada.

?They all laughed at me,? said Bone. ?They thought I was nuts!?

It took three months and multiple tests that yielded inconclusive results before she sought treatment from Murakami. Bone believes the public is largely misinformed on LD issues.

?I never heard of LD until I got bitten by a tick. I think people need to be more aware of [LD] and the truth about it?it totally disables you.?

Bone would like to see LD education in schools so that students and teachers can learn about the dangers of the disease, as well as some of the preventative methods.

The Canadian Lyme Disease Foundation (CanLyme) initiated a research review in response to the newly published Infectious Disease Society of America (IDSA) Clinical Practice Guideline for LD.

?The [IDSA] guidelines are very narrowly focused,? said Jim Wilson, president and founder of the CanLyme. According to Wilson, the IDSA guidelines draw on only a fraction of the huge global databank of LD research.

?They ignore any data that contradicts their own.?

The International Lyme and Associated Diseases Society (ILADS), a medical association of doctors and researchers, has recently called for the IDSA to retract its LD guidelines.

?The ILADS were the initiators of asking that the guidelines be retracted because of their lack of scientific integrity?and we support them,? said Wilson.

Murakami agreed that the IDSA guidelines are not adequate. The Hope physician and Lyme disease expert worries specifically about the lack of LD education provided for medical students.

?How can you treat something if you can?t diagnose the problem first?? asked Murakami. ?Our medical schools are way behind.?

Lyme disease patients are often misdiagnosed as having such illnesses such as Multiple Sclerosis, Fibromyalgia, Crohn?s disease, or Irritable Bowel Syndrome.

Murakami believes the lack of medical education on LD is a result of a split in the medical world regarding the proper diagnosis and treatment.

?There are two factions in the medical world,? he said. One faction believes LD is relatively easy to treat and that antibiotics should be used for three or four weeks. The other faction believes that a patient should stay on treatment until they are relieved of symptoms, and that a few weeks on antibiotics may not be enough.

?My biggest concern is that because we are spilt on the issues of LD, we are not including it in our medical education system,? said

Murakami, who gives lectures on LD around North America. Murakami, who said he has personally seen up to 1,500 patients from around the world, also links global warming to the current prevalence of LD.

?Most [ticks] used to die in the winter months with the cold weather, but it?s so warm now that they don?t die off.? Wilson expects that CanLyme?s research review will take several months.

?We want to give the reviewers ample time for a thorough review,? said Wilson. ?We want one specific focus for each reviewer.?
24 Comments »

1.

Comment by Kate Dunlay

Thank you for publicizing the Lyme issue. There are many of us suffering from Lyme disease now who were diagnosed too late for an easy cure, and there are undoubtedly many suffering who still don?t know what they have. We need to get the medical establishment to stop sweeping this problem under the rug and take a good hard look at what?s going on. All it takes to figure out that a large percentage of studies are being ignored is a search on Pub Med. Once that is acknowledged, we can make progress.
2.

Comment by Carol Jennings

Thank you for bringing Lyme Disease to public attention. My daughter contracted Lyme disease at age 10yrs. Even though she had the characteristic rash and we had visited a known endemic area, doctors were still unable to diagnose the illness. As a result the infection was left to spread throughout her body. We managed to find a doctor who is experienced in treating Lyme disease last year. My daughter is now 13yrs, she has missed over a year of school and has just finished a 1yr course of oral antibiotics and started on I.V antibiotics. Her suffering could have been avoided, if doctors had been able to diagnose and adequately treat the illness early. Lisää kommentteja:

http://www.ubyssey.bc.ca/2006/11/14/lym ... in-review/

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Lähettäjä: Soijuv Lähetetty: 21.11.2006 10:33

IDSA:n suosituksista oli artikkeli uudessa Incectious disease News julkaisussa seuraavasti:

Ohjeiden mukaan:

1. Borrelioosi paranee yksinkertaisella lyhyellä antibioottihoidolla. Satunnaisesti jollekin saattaa jäädä antibioottihoidon jälkeen oireita, jotka eivät ole taudille luonteenomaisia. Nämäkin oireet hävivävät yleensä muutaman viikon lisähoidolla.

2. Niin sanottua Kroonista Borrelioosia ei ole olemassa - heidän käymiensä tutkimusten mukaan.

3. Borrelioosi on parannettavissa oleva sairaus. "Potilaille tulee kertoa taudin olevan parannettavissa oleva spirokeettainfektio- kuten muutkin spirokeetan aiheuttamat infektiot. Pitkaikainen antibioottihoito ei siis auta vaan on haitaksi." Wormserin mukaan "ei ole olemassa näyttöä pitkien antibioottihoitojen hyödyn tai antibiooteille vastustuskykyisen, kroonisen Borrelioosin tueksi.

PS. Eli kaikki, joiden oireet jatkuvat tai uusivat antibioottihoitojen jälkeen eivät IDSA:n ryhmän mukaan sairasta Borrelioosia, vaikka toistuvasti eri tutkimuksissa on löydetty eläviä borrelibakteereita esim. keskushermostosta, suolistosta, nivelistä jne pitkienkin antibioottihoitojen jälkeen (tutkimuksia löytyy runsaasti keskustelupalstaltamme ja kotisivuilta). Mitähän tutkimuksia IDSA:n ryhmä on mahtanut lukea?

PPS. Shapiro näyttää työskentelevän lastensairauksien puolella. Se saattaa selittää sen, ettei hänellä ole tietoa borreliabakteerin kyvystä selviytyä hoidoista ja immuunijärjestelmästä huolimatta. Lapsilla tauti ilmenee usein aikuisista jonkin verran poikkeavasti ja paranee/menee oireettomaksi helpommin. Shapiro ei lasten parissa työskennellessään saa kuvaa siitä mitä bakteeri kykenee aiheuttamaan vuosikymmenienkin kuluttua aivan kuten kupan (spirokeetta) kohdalla on havaittu.
Breaking News & Commentary

http://www.infectiousdiseasenews.com/lo ... =logon.asp
IDSA updates Lyme disease recommendations
The new recommendations are the first updates since 2000.
by Pam Rothman
IDN Assistant Editor



November 2006

New recommendations regarding the treatment of Lyme disease have been released by the Infectious Diseases Society of America to help elucidate the epidemiology, features and diagnosis of the disease.

The new guidelines include the following:

* More information regarding the diagnosis and background of Lyme disease.
* The addition of borrelial lymphocytoma and acrodermatitis chronica atrophicans.
* The addition of human granulocytic anaplasmosis and babesiosis, both of which are deer tick-transmitted infections.
* The recommendation of a single dose of up to 200 mg of doxycycline as prophylaxis for certain patients >8 years of age who have been bitten by an engorged, nymphal-stage deer tick.
* A proposed definition for post-Lyme disease syndrome.

?The updated guidelines were an evidence-based approach and there are extensive references for the scientific evidence that formed the basis for these guidelines,? said Eugene D. Shapiro, MD, FAAP, one of the authors of the guidelines and professor at Yale University School of Medicine Department of Pediatrics.
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Disease transmission


Photomicrograph of Borrelia burgdorferi bacteria
This photomicrograph, magnified 400x, reveals the presence of spirochete, or ?corkscrew-shaped? bacteria known as Borrelia burgdorferi, which causes Lyme disease.


Source: CDC

The organisms that cause Lyme disease, human granulocytic anaplasmosis and babesiosis are found in mice and several other small mammals. Deer ticks acquire the infection from these mammals and subsequently may transmit the organisms to people.

Human granulocytic anaplasmosis is a tick-associated disease caused by a species of bacteria called Anaplasma phagocytophilum. According to the new guidelines, the most common symptoms for this condition are high fever and thrombocytopenia, myalgia muscle pain, fatigue and headache. Babesiosis is an infection that affects the red blood cells, and is transmitted through the bite of a deer tick. In the United States, most patients who are not immunocompromised are either asymptomatic or have only mild symptoms.

Patients who have these illnesses usually show symptoms such as the erythema migrans rash, facial nerve palsy or arthritis of a knee. In addition, flu-like symptoms such as fever, vomiting and joint pain, are also common.
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Treatment

The guidelines state that the majority of patients with Lyme disease should be cured by a simple course of antibiotics. Occasionally, persons who are treated adequately with antibiotics may have persistence of some non-specific symptoms after the antibiotic course has been completed. The updated guidelines discuss post-Lyme disease Syndrome, which generally resolves within weeks without additional antimicrobial treatment.

Within both the updated and old guidelines, Lyme disease is considered a curable disease. ?Patients should be reassured that Lyme disease is a curable infection like other spirochetal infections, and long-term antibiotic therapy is neither helpful nor safe,? Gary P. Wormser, MD, lead author of the guidelines and chief of the division of infectious diseases and vice chairman of the department of medicine at New York Medical College in Valhalla, N.Y., told Infectious Disease News.The new guidelines also cover the so-called ?chronic Lyme disease.? But the panel found no scientific evidence to support the existence of this condition. ?There is also no convincing scientific evidence to justify prolonged antibiotic therapy or to support the existence of antibiotic-refractory, symptomatic Borrelia burgdorferi infection, which is also know as chronic Lyme disease.?

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Doxycycline

According to the new guidelines, some tick bites that occur in patients >8 years of age may be treated with one dose of doxycycline if the Ixodes scapularis tick has been attached for at least 36 hours, if treatment can begin within 72 hours after the tick was removed and if the ecologic information indicates the local rate of infection with B. burgdorferi bacteria is over 20%.

For more information:

* Wormser GP, Dattwyler RJ, Shapiro ED, et al. The clinical assessment, treatment and prevention of Lyme disease, human granulocytic anaplasmosis and babesiosis: clinical practice guidelines by the Infectious Diseases Society of America. Clin Infect Dis. 2006;43:000.
* Wormser GP, Nadelman RB, Dattwyler RJ, et al. Practice guidelines for the treatment of Lyme disease by the Infectious Diseases Society of America. Clin Infect Dis. 2000;31 Suppl 1:1-14.

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Lähettäjä: Soijuv Lähetetty: 21.11.2006 12:56

Ohjeiden nostattamista mielipiteistä lisää esim. seuraavassa julkaisussa:

November 20, 2006

Lyme guidelines outrage sufferers

By ROBIN LORD
STAFF WRITER
Lyme disease activists are hailing Connecticut Attorney General Richard Blumenthal's recent decision to investigate whether antitrust laws have been violated by new Infectious Diseases Society of America guidelines for diagnosing and treating the illness.


A Lyme disease tick from cover of BBI --North American Clinical Laboratories brochure, "Lyme Disease Testing."
(Associated Press)
The new guidelines by the nonprofit medical group, which were released in October, deny the existence of a chronic form of Lyme disease.

Most of the conventional treatments for treating a long-term infection are listed as ''not recommended'' in the new guidelines, which are posted on the federal Centers for Disease Control and Prevention Web site.

''This is just a travesty,'' said Patricia Smith, president of the Lyme Disease Association, who urged Blumenthal to investigate the new protocol. ''I have people e-mailing me every day saying they can't get treatment for themselves or their children.''

Blumenthal's office is looking into whether the guidelines are being used by insurance companies to decide whether or not to cover certain kinds of Lyme disease treatment.

But Cape Cod Hospital infectious disease specialist Dr. Alan Sugar said the society's new guidelines ''make perfect sense'' because they endorse scientifically based medicine.

''Why should insurance companies pay for (long-term antibiotic therapy) if it's not evidence-based medicine?'' Sugar said.

The Infectious Diseases Society is ''cooperating fully with the Connecticut Attorney General's Office subpoena regarding the development of our Lyme disease clinical practice guidelines,'' society spokeswoman Diana Olson said Friday.

''We stand behind our method of developing and issuing guidelines, and we believe IDSA's guidelines on Lyme disease represent the best that science currently has to offer.''

Guidelines called voluntary

The guidelines are voluntary and carry no penalty for noncompliance, she said. ''No guidelines can replace a doctor's judgment with respect to particular patients or special clinical situations.''

But many doctors and their patients believe they will get pressure from insurance companies, who will refuse to reimburse for treatment if they do not adhere to the new protocol.

Whether there is such a thing as a long-term or chronic form of the tick-borne illness - and how it should be treated - has been hotly debated in the medical community for some time.

Many of those who have been diagnosed with a chronic form of the disease claim long-term antibiotic therapy is the only treatment that has helped their symptoms. They argue that diagnosis is often difficult because of a lack of accurate blood tests and the wide range of symptoms.

Risks of infections in patients' intravenous lines and of developing resistance to antibiotics are two of the reasons to stick to short-term treatment for Lyme, according to Sugar. The new protocol calls for antibiotic treatment from 14 to 21 days.

Sufferers urge action

At an October 2005 Statehouse forum, Massachusetts legislators heard from dozens of Lyme disease sufferers and others who urged them to protect doctors who choose to diagnose and treat for chronic Lyme.

Patients told of years of suffering from muscle and joint pain, insomnia, fatigue, memory loss and a host of other problems, which got better only after lengthy - sometimes years - of antibiotics.

State Rep. Shirley Gomes, R-Harwich, filed a bill in May, co-sponsored by 34 other lawmakers, that would have prevented the state Board of Registration in Medicine from disciplining doctors who prescribe long-term antibiotic treatment.

The bill died in committee without ever having been heard. Gomes said on Friday that at least one legislator, state Rep. Jennifer Callahan, D-Sutton, plans to refile the legislation when the next session begins in January.


Gomes said she fully expects the bill will make it to a hearing if it is filed early next year.

Many Massachusetts physicians, as well as IDSA, objected to the proposed bill this year because they disagree with legislating medical practice.

But Gome said the Legislature is involved in many health issues, and the Lyme controversy ''needs a lot more light.''

Robin Lord can be reached at rlord@capecodonline.com.

(Published: November 20, 2006)

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