Chronic Lyme disease ≠ Late Lyme disease

Medical topics with questions, information and discussion related to Lyme disease and other tick-borne diseases.
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Re: Chronic Lyme disease ≠ Late Lyme disease

Post by X-member » Mon 28 Sep 2015 19:13

Martian wrote:
After all, there is no consensus on the definition of "chronic Lyme disease".
The Norwegian definition of chronic Lyme borreliosis:

http://nevro.legehandboka.no/sykdommer- ... 41458.html
Ongoing infection with Borrelia bacterium that has lasted more than 6 months.
Martian also wrote:
Those are the words of someone from NorVect. Maybe (s)he is just mistaken.
Perhaps, or maybe (just like you also wrote) this person and BorrSci don't use the Norwegian definition of "chronic Lyme"?

Some information about "BorrSci":

http://friends-forum.mosken.com/viewtop ... 09#p193870
WP1: Increase knowledge about the phenomenon chronic Lyme disease (pCLD)

WP2: Improve treatment of neuroborreliosis (LNB) (2 vs 6 weeks peroral doxycyclin)

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Re: Chronic Lyme disease ≠ Late Lyme disease

Post by X-member » Mon 28 Sep 2015 19:31

Duncan wrote earlier:
How can early Lyme equate with chronic? Are these cases that already have received treatment? Even then, early is early...
Exactly!

RitaA
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Re: Chronic Lyme disease ≠ Late Lyme disease

Post by RitaA » Mon 28 Sep 2015 21:47

Here's more about BorrSci:

http://www.lyme.no/index.php/component/ ... borreliose
Artikler

25 millioner til forskningsprosjekt på borreliose
Automatically translated to English:
Articles

25 million for research on Lyme disease

Scientists from many Norwegian academic environment, health, Public Health, several universities, and Norwegian Lyme Borreliosis-Association, have collaborated on the project application "Lyme borreliosis, a scientific approach two reducenoise diagnostic and therapeutic Uncertainties (BorrSci)". The funds are allocated through health authorities, while treatment and quality of applications has gone through the Research Council. The application diaper granted and allocated 25 million kroner, in strong competition with many other good project applications in other subject areas. Harald Reiso, adviser at the Norwegian Centre service for tick-borne diseases in Southern hospitals, project leader of "BorrSci".

The project group held its first meeting in conjunction with NorTick 4.-5. Feb (not all were present in the picture)

The project was the everyday both doctors and patients experience in relation to borreliosis. There is much uncertainty regarding diagnosis, symptoms may be many, often nonspecific, and laboratory tests have their limitations. Especially difficult is the situation for patients who experience prolonged problems after a tick bite, either because they have persistent symptoms after standard treatment, or because they do not meet all diagnostic criteria yet been prolonged ill after tick bite. There is insufficient knowledge about the causes of such ailments of long-term, and this has led to a difficult situation where opinions butting heads.

The main objective of the project is to reduce the degree of disagreement and uncertainty about tick-borne diseases, through obtaining more knowledge about diagnosis and treatment, and pathogenesis of Lyme borreliosis. The project is planned with several work packages on different themes.

An important issue is to try to get the basis for a better understanding of what is often called "chronic Lyme disease", ie protracted illness after a tick bite, whether complaints have been sustained after standard treatment for proven Lyme disease, or that the diagnosis has been set late in the disease and thus become more difficult to treat. The possibility of the presence of other tick-borne infections are also part of this subject. Man wants to ascertain the incidence and clinical features of "chronic Lyme disease" and other tick-borne infections. This is an issue NLBF find very interesting.

Part of the project is a treatment study to compare the current recommended regimen of neuroborreliosis with a longer treatment. NLBF is some doubt about the proceeds of this sub-project, since we believe that the scientific basis for choosing alternative treatment regimen is not good enough. Therefore, we are afraid that the outcome is given initially. We shall however not exclude that some patients with early stage neuroborreliosis could benefit from this extended treatment, the proportion of patients receiving long-term ailments can be somewhat reduced.

A very interesting part of the project is to study how the immune system responds to Borrelia infection, and why this may be so different from person to person. To describe these differences, and understanding disease progression better, it is planned to use a wide range of analysis, from the detection of antibodies to new molecular biology techniques. It is also planned to see if it is so persistent ailments for neuroborreliosis frames genetically pre-disposed persons. Moreover, consider neuropsychological profiles and MR images of the central nervous system to the people affected by neuroborreliosis. The data for the immune, genetic and MRI sections of the study comes from the people in sub-study that deals with long-term ailments after borreliosis, and from people with neuroborreliosis in the treatment portion of the study.

As part of the project it is also planned to build a biobank. It is a system for storing samples from well-defined Lyme disease patients, so that samples can be used in a research context later.

Norwegian Lyme Borreliosis 'Union's role in the process of project application has been to convey patients' experiences and try to influence the priorities of issues from our interests. Some views have we gained approval for, others not. So it will always be in collaborative projects between many parties. Once the project has now been approved, will NLBF help with recruiting patients for some of the projects. How and when this will take place is not yet clear. When it becomes necessary to send invitations to participate, will be given more information about what this involves and what are the conditions for participation.

NLBF anticipates that the project will contribute to better understanding of tick-borne diseases and to a better situation for patients in the long term.

RitaA
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Re: Chronic Lyme disease ≠ Late Lyme disease

Post by RitaA » Mon 28 Sep 2015 21:55

http://xn--flttsenteret-ucb.no/forskning/borrsci/

Automatically translated to English:
BorrSci (Lyme borreliosis, a scientific approach two reducenoise diagnostic and therapeutic Uncertainties) is a large research project which aims to improve the diagnosis and treatment of Lyme disease, as well as increasing knowledge about chronic Lyme disease.

Project overarching question is: Can uncertainty in diagnosis and treatment of disseminated (not just local) Borrelia infection reduced?
Through five work packages, the project will increase the knowledge about long-term problems after Lyme disease and improve diagnosis and treatment of Lyme disease.

Work Package 1: To improve the understanding of the phenomenon of chronic Lyme disease (FKB), through tasks 1-3

1. Epidemiology: mapping the incidence of FKB in Norway
2. Clinical: identify clinical characteristics of individuals with FKB.
3. Laboratory wise: consider laboratory findings in relation to evidence of previous or ongoing infection with Borrelia bacteria, or other tick-borne microbes, in people with FKB.

Work Package 2: To improve the knowledge-based treatment practices of neuroborreliosis

Research Question: Are short-term treatment (two weeks) of doxycycline tablets least as effective as long-term treatment (six weeks) to prevent distress and functional impairment at six-month follow-up?

Work Package 3: Establish a national biobank for borreliosis

Work Package 4: Search for new biomarkers by Lyme disease, and better understanding of the disease mechanisms of neuroborreliosis and long term ailments after borreliosis, through tasks 1.3

1. Assess the strength of the immune response relative to antibodies against Borrelia in patients with neuroborreliosis and analyze cytokine and chemokine protein profiles associated with immune response of the same people.
2. Determining gene profiles for different types of immune cells from patients who recover after treatment of Lyme disease, and in patients who still have clinical problems after such treatment. Wanted borreliosis-associated gene variants and genetic biomarkers that characterize patient groups.
3. Investigate possible associations between neuropsychological profiles and structural changes in the brain - MRI, in people with neuroborreliosis.

Work Package 5: Improved patient care and disseminate new knowledge about Lyme disease

Establish collaborative network of researchers and clinicians to improve the treatment of Lyme disease, strengthen research, identify key challenges in research and treatment, and push forward new issues for research. New knowledge about the pathology, diagnosis and treatment should be made readily available to the population, medical professionals, scientists and politicians.
25 million in research funding

Funding for the project is granted by the Research Council program Health Research. BorrSci is a major cooperation between several hospitals and research institutions. International contacts are also associated with the project. The application for the research project is driven by specialists on ticks and tick-borne diseases at the Southern Hospital and University of Agder. In particular, the neurologist Treat Ljøstad the neurological department, Southern hospitals, contributed significantly to the process. Harald Reiso heads the research project. Harald Reiso also works part-time at the National expertise service for tick-borne diseases.

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Re: Chronic Lyme disease ≠ Late Lyme disease

Post by X-member » Mon 28 Sep 2015 23:22

I asked Harald Reiso what he meant with "the phenomenon chronic Lyme disease (pCLD)".

He gave me the following answer:
Post-treatment symptoms
The cause of persisting symptoms after treatment for LB is unknown.

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Re: Chronic Lyme disease ≠ Late Lyme disease

Post by X-member » Tue 29 Sep 2015 0:00

Duncan wrote earlier:
Also, it would be nice if there were more studies looking specifically at late stage NB.
I agree, but not only on cases with late NB. Late NB is actually rather rare in Sweden and Norway. (Most cases with NB are diagnosed early.)

duncan
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Re: Chronic Lyme disease ≠ Late Lyme disease

Post by duncan » Tue 29 Sep 2015 0:28

Yes, I hear you, although I suspect there are more cases of NB than are publicly estimated. I think NB might be sub-clinical in some. The symptoms may be so "soft" or intermittent that it goes undiagnosed.

Most clinicians probably look for brain infections that present with acute noise, and I fear this is often not the case. I am concerned that over time, those symptoms may accrue and become more pronounced, but by that point, chronicity might ensue and all the difficulties and weaknesses with testing would apply.
Last edited by duncan on Tue 29 Sep 2015 1:09, edited 1 time in total.

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Re: Chronic Lyme disease ≠ Late Lyme disease

Post by X-member » Tue 29 Sep 2015 1:09

I meant studies on cases with ACA and late artritis (and so on) no matter if those patients "might" have NB too. ;)

duncan
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Re: Chronic Lyme disease ≠ Late Lyme disease

Post by duncan » Tue 29 Sep 2015 1:11

I misunderstood. My bad.

I agree with what you just said, too. :)

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