The problem in Sweden (and maybe in other places in Europe)

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X-member
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The problem in Sweden (and maybe in other places in Europe)

Post by X-member » Mon 23 Jan 2012 21:48

I have talked about it in some topics, but I think it is hard to get the whole picture.

In Sweden a physician do not have to follow the treatment recommendations in "special cases". And "special cases" are such cases that there are no studies on, or not any good studies on, in the recommendations.

We have been informed that those "special cases" should be taken care of by more skilled specialists.

But we have no such specialists in Sweden, so many people must travel to Germany or Norway to get help. And it is expensive too.

The solution in Sweden is actually very simple, and it is to find such specialists, that can take of us in Sweden within our public health care.

But, what do you think stop this?

I am (almost) sure that it is those 4 major studies, that (what I know of :roll: ) not even is done on cases with late European (in most cases B Afzelii in Sweden) borreliosis.

And now you understand why I ask for studies on late European borreliosis.
Last edited by X-member on Wed 6 Jun 2012 17:32, edited 1 time in total.

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Re: The problem in Sweden

Post by X-member » Tue 24 Jan 2012 21:54

I have to add that I am NOT involved in what is going on in US at all!

But sometimes I try to help BOTH SIDES with info that MIGHT help everyone.

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Re: The problem in Sweden

Post by X-member » Wed 6 Jun 2012 16:38

In the Swedish recommendations (almost) the only symptom ACA (acrodermatitis) is found when it comes to chronic Lyme borreliosis/stage 3.

But I have posted more symptoms when it comes to a disseminated B Afzelii-infection (and more information) in the topic below:

"Info about (mainly) B Afzelii"

http://www.lymeneteurope.org/forum/view ... f=5&t=3592

A quote:
http://cid.oxfordjournals.org/content/43/6/704.full.pdf

Symptoms for B Afzelii (from the link above):

Fatigue 80% of the cases
Malaise 80% of the cases
Sleepiness 30% of the cases
Memory disturbances 40% of the cases
Concentration disturbances 50% of the cases
Paresthesia 60% of the cases
Dizziness 60% of the cases
Nausea 30% of the cases
Vomiting 30% of the cases
Pains 90% of the cases (more detailed info on the site)
Temperature over 38 C 10% of the cases
Meningeal signs 10% of the cases
Peripheral facial palsy 10% of the cases
Arthritis 10% of the cases
Last edited by X-member on Thu 26 Jul 2012 16:44, edited 1 time in total.

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Re: The problem in Sweden

Post by X-member » Wed 6 Jun 2012 16:42

Dr MacDonald have posted some interesting information about neuroborreliosis in the topic below:

"Lyme Neuroborreliosis Review - Germany"

http://www.lymeneteurope.org/forum/view ... f=6&t=3880

Some quotes (more to read in that topic):
In North America, the manifestation of LNB is less characteristic, with headache and neck stiffness (due to meningitis), subtle sensory polyneuropathy or mild cognitive disturbances in the context of encephalopathy.[69,70] The reason for the different clinical pictures between the continents is most probably the different genospecies, as B. garinii and the recently separated B. bavariensis (as the typical species found in Bannwarth’s syndrome[2]) are only endemic in Europe and not in North America.[69] Even within Europe, there appear to be different forms of LNB depending on the responsible Borrelia species. While LNB patients infected with B. garinii report radicular pain more often and express meningeal signs, those infected with B. afzelii complain more about dizziness.[71] Taken together, LNB should be recognized as a more heterogeneous disease, and it might even be of use to stratify LNB according to the underlying borrelial genospecies.
Nevertheless, PLD has to be distinguished from persisting symptoms due to the harmful effects of the initial borrelial infection (e.g., direct cytotoxicity of the spirochetes).

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Re: The problem in Sweden

Post by X-member » Wed 6 Jun 2012 16:49

I wrote (in the first post):
But we have no such specialists in Sweden, so many people must travel to Germany or Norway to get help. And it is expensive too.
Now a couple of Swedish "special Lyme cases" have had some of their costs (for their treatment in Germany or Norway) covered by Försäkringskassan, so the situation is getting better in Sweden! ;)

"Försäkrings kassan" translated with google translate: Insurance Office/agency (?) (I don't know the correct translation.)

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Re: The problem in Sweden

Post by X-member » Wed 6 Jun 2012 17:16

And when I talk about late Lyme disease/borreliosis (see my first post), I talk about the European definition (s):

"Chronic, persistent infection (s)"

http://www.lymeneteurope.org/forum/view ... 849#p28654

From the topic above (from EUCALB):
Late Lyme borreliosis.

This uncommon stage presents several years after the initial infection and may involve the joints (Lyme arthritis), skin (acrodermatitis chronica atrophicans) or, rarely, chronic neurological syndromes.
ACA (acrodermatitis):
....which is probably the most common manifestation of chronic Lyme borreliosis in Europe.
Last edited by X-member on Wed 6 Jun 2012 17:36, edited 1 time in total.

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Re: The problem in Sweden

Post by X-member » Wed 6 Jun 2012 17:19

More from the topic/thread that I linked you to in the post above:
European chronic, persistent Lyme borreliosis:

"Prolonged antibiotic therapy in PCR confirmed persistent Lyme disease"

http://www.grin.com/en/e-book/166179/pr ... me-disease

A quote (more to read on the link):
Wolfgang Klemann, MD, PhD
Bernt-Dieter Huismans, MD, PhD
Stephan Heyl, MD, PhD

Abstract: We examined a sample of 90 individuals that had previously received a
course of appropriate antibiotics for Lyme disease without experiencing full
resolution of their symptoms and had evidence of persistent infection documented
by PCR analysis.

Mean duration of symptoms was 9.5 years (range 1 - 40 years). The treatment
was adapted to the individual case according to clinical response. Long term
antibiotic therapy was initiated and patients were treated continuously for at least 6
months, in some cases several years of intermittent therapy was administered.

About 38,8% of the patients experienced full remission of symptoms while about
56,7% reported a significant improvement, 5,6% of patients were deemed
refractory to therapy. Therapeutic modalities are discussed in detail.
In the study/summary above there are (most likely) also people/Lyme cases from Sweden.

Claudia
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Re: The problem in Sweden

Post by Claudia » Wed 6 Jun 2012 18:09

Carina wrote:
Wolfgang Klemann, MD, PhD
Bernt-Dieter Huismans, MD, PhD
Stephan Heyl, MD, PhD

The treatment was adapted to the individual case according to clinical response. Long term antibiotic therapy was initiated and patients were treated continuously for at least 6 months, in some cases several years of intermittent therapy was administered.
This makes the most sense, and is the most humane way to treat a well documented patient in my opinion, and one in where other conditions have been thoroughly ruled in or out. Gage the response in the patient and treat accordingly.

This is also the way the veterinarians in my endemic area will treat their canine and equine Lyme disease patients who are the more difficult cases -- and there seems to be zero controversy about it. It is hard to tell if an animal is relapsing or re-infected, but in either case the benefit of doubt is given and the animal retreated with antibiotics for a period and reevaluated to determine whether to stop and see that the positive response holds or to continue with a prolonged course or courses as necessary.
Last edited by Claudia on Sun 10 Jun 2012 14:01, edited 1 time in total.

tosho
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Re: The problem in Sweden

Post by tosho » Wed 6 Jun 2012 19:35

Thanks for posting the link to this article: "Prolonged antibiotic therapy in PCR confirmed persistent Lyme disease". Good to see a healthy and reasonable approach to the problem, it's a bit like a "breath of a fresh air" compared to the IDSA's satire.
I've heard previously about dr. Klemann. You can google his website. What is worth noticing is that he is in the same city (Pforzheim) dr. Woitzel is. Dr. Woitzel is a Bionic 880 quack, who promotes bogus "energetic medicine" treatments for Lyme disease. I've heard from one patient of dr. Klemann that dr. Woitzel once proposed him co-operation, but thankfully dr. Klemann refused.

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