Quality of life: the same all around

Medical topics with questions, information and discussion related to Lyme disease and other tick-borne diseases.
hv808ct
Posts: 256
Joined: Wed 30 Jul 2008 4:11

Quality of life: the same all around

Post by hv808ct » Wed 30 Sep 2015 3:38

Quality of life, fatigue, depression and cognitive impairment in Lyme neuroborreliosis.
Dersch R, Sarnes AA, Maul M, Hottenrott T, Baumgartner A, Rauer S, Stich O.
J Neurol. 2015 Sep 26.

Some authors state that besides treatment, debilitating long-lasting symptoms can occur in LNB, speculating about an ongoing infection with persisting borrelia, a so-called ‘chronic lyme disease’. These patients would suffer from fatigue, cognitive impairment and pain, requiring extended courses of treatment with multiple antibiotic agents. Severe complications and even fatalities following these treatments have been reported . Other authors doubt the existence of this ‘chronic lyme disease’ at all, stating that the mentioned symptoms are rather nonspecific and exist as ‘background symptoms’ also in the general population. This is symptoms in patients with erythema migrans and healthy controls. However, evidence for impaired quality of life and increased fatigue for patients with LNB is inconclusive.

Some authors report similar findings for quality of life, fatigue and depression in healthy controls, whereas other authors state considerable differences and impairing deficits in patients with LNB. To assess the long-term outcome, residual symptoms and the impact of the disease on quality of life of patients with LNB, we conducted a case–control study including patients from the Medical Center, University of Freiburg, which is located in the southwest part of Black Forest representing a region of endemic Lyme disease in Germany.

We screened patient records in the electronic database of the Medical Center, University of Freiburg according to the International Classification of Diseases (ICD) 10 code A69.2 for 2003–2014. Records were screened by one investigator if the criteria for diagnosing ‘definite’ LNB, as defined by Mygland and Kaiser, were met. For ‘definite’ LNB, patients must have compatible neurological symptoms, CSF pleocytosis, antibodies against B. index C2 as evidence for Borrelia-specific intrathecal antibodies production. Only adult patients (>18 years) were included.

Case definition for LNB was met by a total of 53 adult patients, of whom 30 were willing to partake in the study.

All patients were initially treated with either ceftriaxone, doxycycline or subsequently with both antibiotics to allow discharge to home care.

Some authors postulate a ‘chronic Lyme disease’ or a ‘post-treatment Lyme disease syndrome’, consisting of cognitive impairment, fatigue and depression after antibiotically-treated Lyme disease with considerable impact on quality of life of patients, which requires additional treatment with extended antibiotic courses. However, evidence from controlled studies for the existence of this ‘chronic Lyme disease’ remains scare. This uncertainty and perceived severity of residual symptoms leads to anxiety and possibly distrust in affected patients.

In our study, no statistically significant difference for fatigue, quality of life, depression, verbal memory or cognitive impairment between patients with LNB and healthy controls could be observed.

Our results are in line with the findings of Kalish et al., who could not find statistically significant differences in measurements of quality of life, depression, verbal memory, and cognitive impairment between 31 patients with LNB and 30 healthy controls.

Our results do not support the hypothesis that a considerable proportion of patients with LNB develop, despite treatment, a ‘chronic Lyme disease’ or a ‘post-treatment Lyme disease syndrome’ consisting of debilitating fatigue or cognitive impairment with severe limitations of their quality of life.

duncan
Posts: 1370
Joined: Wed 5 Sep 2012 18:48

Re: Quality of life: the same all around

Post by duncan » Wed 30 Sep 2015 3:48

Within a very short span, several studies have been surfacing attempting to characterize PTLDS or any Lyme symptoms post-treatment as minimal and uncomplicated and slight. The ole "aches and pains" of daily life BS.

Could this have something to do with the looming new Lyme guidelines?

I wounder who sponsored some of these studies? Who were behind the sponsors?

I think we have to assume that the new Guidelines will reference some of these exercises as proof there is no decline in QoL in post treatment Lyme patients.

Each one of these efforts should be revealed, when appropriate, for the sub-par science at play, where ever possible. If there are ten references that back claims that PTLDS symptoms are minor and represent no disability, Lyme advocacies must be prepared to expose each of those studies with subpar efforts as unworthy and incapable of supporting meaningful inferences and conclusions, where fitting.

This should be a planned strategy, and readied for response to the first Guideline draft. From the list of references, a link to an expose identifying possible flaws in each referenced study, and eviscerating them for those flaws. A common thread might emerge from this galvanized process. A compelling narrative that clarifies once and for all elements of the monstrous and emotionless Lyme machine.

That narrative in turn needs to find its way to the press. Multiple outlets, worldwide.

It is our responsibility to make sure the press is fully appraised of what's going on.
Last edited by duncan on Wed 30 Sep 2015 13:55, edited 6 times in total.

hv808ct
Posts: 256
Joined: Wed 30 Jul 2008 4:11

Re: Quality of life: the same all around

Post by hv808ct » Wed 30 Sep 2015 12:31

Yes, it’s a conspiracy. Like climate change, vaccines, fluoride, smoking, sugar, electric cars, Obama, and Lyme disease.

Conflicts of interest:
RD, AS, MM, TH and AB have nothing to declare. SR reports receiving consulting and lecture fees, grant and research support from Bayer Vital GmbH, Biogen Idec, Merck Serono, Novartis, Sanofi-Aventis, Baxter, RG, and Teva. Furthermore, SR indicates that he is a founding executive board member of ravo Diagnostika GmbH. All other authors declare that they have no competing interests. OS reports receiving consulting and lecture fees, grant and research support from Baxter, Bayer Vital GmbH, Biogen Idec, Genzyme, Merck Serono, Novartis, RG, Sanofi-Aventis and Teva.

Ethical standard:
The study was approved by the ethics committee of the Medical Center, University of Freiburg. Informed consent was obtained from every participant.

duncan
Posts: 1370
Joined: Wed 5 Sep 2012 18:48

Re: Quality of life: the same all around

Post by duncan » Wed 30 Sep 2015 13:05

I wasn't speaking specifically to this study.

Conspiracy? Perhaps a circling of the wagons might better describe this curiously timed outpouring of studies saying sick patients aren't so sick...

Take a look at what's going on in the UK, though. There, it's reportedly been a playground for denialists and pychobabblers at the expense of many people sick with Lyme and ME/CFS, etc.

But study after study is coming out supporting the biology behind these diseases and their prevalence, exposing problems with diagnostics, etc. One can almost hear the desperation in the tones of the feeble studies the psychobabblers, for example, manage to generate recently to buttress their dwindling support. And now there is the issue of the UK billionaire whose family is sick with Lyme, who probably commands more cash than the Lyme budgets of the UK and the US and several major European countries combined. Good stuff.

I suspect that the scientific community ultimately will shun this camp's dark innuendo that tries to portray people sick with late stage Lyme or PTLDS as anything resembling healthy. Perhaps other communities will turn their backs on them as well.

duncan
Posts: 1370
Joined: Wed 5 Sep 2012 18:48

Re: Quality of life: the same all around

Post by duncan » Wed 30 Sep 2015 16:08

Ok, I'd like to focus on this study that this thread opened by hv808ct is based upon.

I have a couple questions:

1) Are these 30 LNB patients recovered patients, ie, were treated and never diagnosed with PTLDS or chronic Lyme? You know, not everyone who contracts Lyme goes on to experience chronic Lyme or what some might call PTLDS. Many are cured. Is this sample in part comprised of cured patients? Is the entire sample just cured patients??

2) What were the qualifications of the screening "investigator"?

3) It appears that close to half of former LNB patients contacted refused to participate in the study. Do the authors provide any insight as to why such a high percentage refused?

4) Am I correct in interpreting this write-up as saying out of 30 LNB patients, none got PTLDS, and yet they went through the process of comparing the QoL scores of cured patients with healthy controls??

X-member
Posts: 3954
Joined: Mon 30 Jul 2007 18:18

Re: Quality of life: the same all around

Post by X-member » Wed 30 Sep 2015 17:56

The Swedish definition of chronic (Lyme) neuroborreliosis according to Dr Leif Dotevall and professor Lars Hagberg:

Neuroborrelios i vanrykte

http://www.lakartidningen.se/Functions/ ... cleId=8371

A quote:
kronisk neuroborrelios (obehandlad infektion med duration mer än 6 månader)
Translation:
Chronic (Lyme) neuroborreliosis (an untreated infection with a duration of more than 6 months)

X-member
Posts: 3954
Joined: Mon 30 Jul 2007 18:18

Re: Quality of life: the same all around

Post by X-member » Wed 30 Sep 2015 19:06

From the first post:
Our results do not support the hypothesis that a considerable proportion of patients with LNB develop, despite treatment, a ‘chronic Lyme disease’ or a ‘post-treatment Lyme disease syndrome’ consisting of debilitating fatigue or cognitive impairment with severe limitations of their quality of life.
If they did a study only on patients with early (stage 2) neuroborreliosis (se also my previous post) they actually could be right.

duncan
Posts: 1370
Joined: Wed 5 Sep 2012 18:48

Re: Quality of life: the same all around

Post by duncan » Wed 30 Sep 2015 19:09

Well, I suppose, but what are they right about? That 30 patients cured of NB don't have any symptoms? Isn't there a tautology wrapped up in there somewhere?

X-member
Posts: 3954
Joined: Mon 30 Jul 2007 18:18

Re: Quality of life: the same all around

Post by X-member » Wed 30 Sep 2015 20:57

I am a bit tired of my poor English, but I think that those German physicians (see the first post) maybe have been contacted by some people that think that "neuro-Lyme" is another word for stage 3, and those people maybe also think that "post-Lyme" (PTLDS should not be called "chronic Lyme disease" according to CDC) is the same thing that German "LLMD:s" mean when they talk about chronic Lyme borreliosis.

The German "LLMD:s" definition of chronic Lyme borreliosis:

Diagnosis and Treatment of Lyme borreliosis

http://www.borreliose-gesellschaft.de/T ... elines.pdf

Two quotes:
The term “chronic Lyme borreliosis” is equivalent to Stage III.
Disease manifestations of Lyme borreliosis which occur more than 6 months after the start of infection are designated in this Guideline as late manifestations or as chronic.

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

Re: Quality of life: the same all around

Post by Martian » Wed 30 Sep 2015 21:39

The term "chronic Lyme disease" does not have one universal definition. So everyone using it, should define what they mean with it. Even better is avoiding the term and replacing it with a less ambiguous term.

Post Reply