How are the Lyme guidelines in the European countries?

General or non-medical topics with information and discussion related to Lyme disease and other tick-borne diseases.
Martian
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Location: Friesland, the Netherlands

How are the Lyme guidelines in the European countries?

Post by Martian » Sun 29 Jul 2007 19:01

I am wondering how the Lyme guidelines in the different European countries are. In the Netherlands they are comparable with the IDSA-guidelines in the US. How about the other European countries?

X-member
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Joined: Mon 30 Jul 2007 18:18

Re: How are the Lyme guidelines in the European countries?

Post by X-member » Thu 2 Aug 2007 19:31

Hello!

I will try to explain the Swedish guidelines (from1997, and never updated) for you.

http://www.lakemedelsverket.se/upload/H ... ingar2.pdf (in Swedish, but you can understand the treatment-part)

You must have a positive Lyme tests in Sweden (if you do not have a Bulls-eye rash, that is), otherwise you do not have Lyme.

We do not have any good Lyme tests in Sweden, at all!

If you turn to a “Lyme expert” in Sweden you will only get a 14 days treatment with 2 x 100mg/Doxy/day.

And the longest treatment in Sweden according to our Lyme guidelines, is 3 weeks/20 days.

And if you are not cured, and turn to the expert again, he only tell you: “You are cured”

If you mention that you experience Herx-reactions (like I did) they laugh at you, and say: “You only Herx when you are treated for Syphilis”.

O lot of people from Sweden have had to go to Germany (or other places abroad) the get diagnosed, and/or to get a proper treatment.

And in Norway some have turned to England, or USA for help.

Carina from Sweden (the land that totally lack LLMD:s)

Huck
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Joined: Sun 29 Jul 2007 12:30

Re: How are the Lyme guidelines in the European countries?

Post by Huck » Thu 2 Aug 2007 21:04

Carina wrote:Hello!

I will try to explain the Swedish guidelines (from1997, and never updated) for you.

http://www.lakemedelsverket.se/upload/H ... ingar2.pdf (in Swedish, but you can understand the treatment-part)

You must have a positive Lyme tests in Sweden (if you do not have a Bulls-eye rash, that is), otherwise you do not have Lyme.

We do not have any good Lyme tests in Sweden, at all!

If you turn to a “Lyme expert” in Sweden you will only get a 14 days treatment with 2 x 100mg/Doxy/day.

And the longest treatment in Sweden according to our Lyme guidelines, is 3 weeks/20 days.

And if you are not cured, and turn to the expert again, he only tell you: “You are cured”

If you mention that you experience Herx-reactions (like I did) they laugh at you, and say: “You only Herx when you are treated for Syphilis”.

O lot of people from Sweden have had to go to Germany (or other places abroad) the get diagnosed, and/or to get a proper treatment.

And in Norway some have turned to England, or USA for help.

Carina from Sweden (the land that totally lack LLMD:s)
Pretty much exactly same here in Finland. No LLMD:s here either and that makes this so difficult.

Martian
Posts: 1944
Joined: Thu 26 Jul 2007 18:29
Location: Friesland, the Netherlands

Re: How are the Lyme guidelines in the European countries?

Post by Martian » Mon 6 Aug 2007 15:11

In the Netherlands the guidelines' advised maximum duration of antibiotic treatment is 30 days. Only if continuing infection has been proven with PCR or culture, or clinical symptoms indicate continuing infection, longer treatment is advised.

We do have a few MDs who are willing to treat longer and with higher dosage.

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Re: How are the Lyme guidelines in the European countries?

Post by X-member » Thu 9 Aug 2007 15:25

Something good is going on in Sweden! :)

There has been a lot of writing in our newspapers about our Swedish “Lyme-problems” and this fast growing problem have even been discussed in Swedish television, several times.

http://sydsvenskan.se/sverige/article257154.ece

" Flera fall av patienter som söker vård utomlands har uppmärksammats i medierna. Professor Pia Forsberg, som leder en mångårig studie om fästingburen smitta, efterlyser en nationell debatt om hur sjukdomen ska behandlas.
- Det är en mycket komplicerad fråga. Att patienter åker utomlands för att få behandling är inte hållbart, säger hon."

I translate:

“Several cases of patients that have had to go abroad to get help has been observed in the media. Professor Pia Forsberg, who is leading a many year long study regarding tick-transmitted infections, request a national debate about how the disease (Lyme) should be treated.
- It is a very complicated matter. Patients going abroad to get treatment is not right, she says.”

Carina from Sweden

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Yvonne
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Re: How are the Lyme guidelines in the European countries?

Post by Yvonne » Fri 10 Aug 2007 14:35

That's good news. Let's hope that it will help.

By us there also were more about Lyme disease on TV, on the radio,and in the newspapers last year.

It is very necessary that it take place.There are still people(and doctors) who don't know how bad lyme disease can be.
Listen to all,
plucking a feather from every passing goose,
but follow no one absolutely

NellyP
Posts: 43
Joined: Mon 29 Oct 2007 18:22

Re: How are the Lyme guidelines in the European countries?

Post by NellyP » Mon 29 Oct 2007 21:39

http://www.infectiologie.com/site/media ... _court.pdf

French Guidelines, Dec 2006. I won't comment, same tired old stuff, Post-Lyme Syndrome does not require abx treatment.

Oh, and the only real problem doctors here in France have with Lyme is that it is over diagnosed, as they keep being told by ID "experts" that having symptoms and a positive serology does not spell Lyme, so what doctors have to weed out are all these thousands upon thousands of false positive pseudo-Lyme patients and get them onto steroids and anti-depressants to safely "manage" their Post-Lyme Syndrome

Nelly

itsy
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Joined: Mon 29 Oct 2007 21:03

Re: How are the Lyme guidelines in the European countries?

Post by itsy » Tue 30 Oct 2007 19:41

Martian wrote:Only if continuing infection has been proven with PCR or culture, or clinical symptoms indicate continuing infection, longer treatment is advised.
What are the clinical symptoms indicating continuing infection?

Nancy

Martian
Posts: 1944
Joined: Thu 26 Jul 2007 18:29
Location: Friesland, the Netherlands

Re: How are the Lyme guidelines in the European countries?

Post by Martian » Tue 30 Oct 2007 21:12

itsy wrote:
Martian wrote:Only if continuing infection has been proven with PCR or culture, or clinical symptoms indicate continuing infection, longer treatment is advised.
What are the clinical symptoms indicating continuing infection?
Quote from the Dutch Lyme-guidelines: "In case of persistent or relapsing specific signs of Lyme-arthritis, ACA or meningitis, a repeated antimicrobial treatment needs to be considered."

Chris
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Joined: Sun 28 Oct 2007 23:12
Location: United Kingdom

Re: How are the Lyme guidelines in the European countries?

Post by Chris » Wed 31 Oct 2007 0:11

Here in Britain the Health Protection Agency have all the power over Lyme disease in this country, and they follow the American Academy of Neurology/IDSA/CDC guidelines.

http://www.hpa.org.uk/infections/topics ... elines.htm

They are always warning against long-term antibiotics and they believe Chronic Lyme disease is overdiagnosed.

The head of the Lyme unit at the HPA was one of the authors of the recent article "A Critical Appraisal of "Chronic Lyme Disease"" (O'Connell).

They also believe that the tests for late-stage Lyme disease are HIGHLY accurate, with over 95% accuracy. They also do testing at the HPA lab, where sometimes it takes them as long as 4+ months to do a single western blot test (during this time, the blood is probably just sitting on the side. Is it any wonder so many people test negative there? :roll: )

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