Neuroborreliosis is not the same thing as late Lyme disease

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Neuroborreliosis is not the same thing as late Lyme disease

Post by X-member » Mon 3 Sep 2012 4:01

I start a new topic instead, since another discussion have started in the other topic where I (and Rita) talked about this.

I have many times given this important information (from skilled German physicians):

http://www.praxis-berghoff.de/dokumente ... glisch.pdf
There is a high therapeutic failure rate for the antibiotic treatment of
lyme borreliosios in its late phase (52, 54-56, 65, 75-77)
But I have noticed that some people from US, don't understand this (thank you, again Rita):

http://www.lymeneteurope.org/forum/view ... f=7&t=4174

A quote:
More than 95% can be classified as early LNB (stage II), defined as signs and symptoms lasting for <6 months. Less than 5% have late LNB (stage III) with duration between 6 months and several years [12]. The natural course of early LNB is often self-limiting [13], whereas late LNB has a chronic course that probably reflects persistent survival of bacteria in nervous tissue.
As you can see, most people diagnosed with neuroborreliosis actually instead have early Lyme disease.

And in the text above, you can find information about what I actually mean when I talk about a chronic infection.

But, I think that some people from US think that this word "chronic" stands for "unexplained remaining symptoms after early treatment, as in Klempner studies, but as you can see it don't.

I get really "funny" reactions (from some members), and I have tried to find an explanation, but it is almost impossible to understand why some members don't like that some people with late Lyme disease before treatment actually are not cured with "standard treatment", and maybe need more abx.
Last edited by X-member on Mon 3 Sep 2012 6:40, edited 1 time in total.

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Re: Neuroborreliosis is not the same thing as late Lyme dise

Post by X-member » Mon 3 Sep 2012 4:11

Removed, better information is found in the other posts in this thread.
Last edited by X-member on Thu 18 Oct 2012 0:54, edited 1 time in total.

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Re: Neuroborreliosis is not the same thing as late Lyme dise

Post by X-member » Mon 3 Sep 2012 5:52

And now, Halperin (from another topic).

Halperins "definition" of "stage 3":

http://www.aldf.com/pdf/Halperin_Book_Chapter_17.pdf

A quote (from: "17.6 Treatment – The Myth that More
(and more and more…) is Better"):

Numerous studies have now shown that Lyme disease – even in the presence of
nervous system infection
– can readily be treated with fairly short courses of con-
ventional antibiotics.
Let us say that most people actually think that neuroboreliosis is the same thing as late Lyme disease/stage 3? Then they will probably think that Halperins information (above) is correct.

But (with the help from Rita) I have now shown that neuroboreliosis is NOT the same thing as late Lyme disease/stage 3 (in most cases).

Most cases (at least in Europe) with neuroborreliosis are actually diagnosed in an early Lyme stage/stage 2.

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Re: Neuroborreliosis is not the same thing as late Lyme dise

Post by X-member » Mon 3 Sep 2012 5:58

This is also from another topic:

And what do ALDF say about late Lyme disease?

A quote:
Although treatment approaches for patients with late-stage LD have become a matter of considerable debate, many physicians and the Infectious Disease Society of America recognize that, in some cases, several courses of either oral or IV (depending on the symptoms presented) antibiotic treatment may be indicated.

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Re: Neuroborreliosis is not the same thing as late Lyme dise

Post by X-member » Mon 3 Sep 2012 17:15

And WHAT exactly is a chronic or late Lyme infection?

It is an active Lyme infection that have lasted for a longer time* (no matter if the patients have had treatment or not). *As you also can see in the information from Norway about neuroboreliosis.

What is said about neuroborreliosis in Europe:

http://www.lymeneteurope.org/forum/view ... =20#p30213

From the topic above:

From Dr Marie Kroun, Denmark:

http://lymerick.net/Borrelia-culture.html
Since patients with Borrelia afzelii infection may be just as sick and may have Borrelia afzelii in their CSF and or blood - whether they express the usual laboratory signs of "certain neuroborreliosis" or not, it should be clear to all that the patients infected with Borrelia afzelii also deserve to get the correct diagnosis and treatment for their Borrelia infection!

It seems that Borrelia afzelii is apparently less immunogenic / more stealth in its nature than Borrelia garinii, so correct diagnosis is not made by the conventional test methods, are not made early at the time when there is great chance of cure by short term antibiotic treatment - because the patients are not diagnosed and treated as early they have a worse long term prognosis and are not cured by conventional treatment for Borrelia, resulting in long term debilitating sickness, and inability of patients to work etc. etc ... the impact on the society of undiagnosed Borrelia afzelii infection with or without sign of neuroborreliosis is probably much more common than hitherto beleived, because usual tests failed to give the correct diagnosis, a much larger proportion of chronic illness could be due to undetected and untreated Borrelia afzelii infection, compared to typical Borrelia garinii neuroborreliosis infection, that usually raise a quick and high immune response in its victims ... leading to fast diagnosis and treatment and good chance of cure by early treatment!?

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Re: Neuroborreliosis is not the same thing as late Lyme dise

Post by X-member » Wed 5 Sep 2012 16:43

http://www.everth.de/assets/images/Inci ... ermany.pdf

From the link above:

A quote:
"When diagnosed early, borreliosis can be treated successfully with
antibiotics. If the infection is not diagnosed, diagnosed too late or
treated with an inadequate or overly short course of antibiotics, a chronic
course of the disease may develop
affecting the nervous system, joints
and heart which is difficult or even impossible to treat."

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Re: Neuroborreliosis is not the same thing as late Lyme dise

Post by X-member » Wed 5 Sep 2012 16:52

And now I ask (Bagge for example) where the above (and what is said in the information from Norway that I link to in the first post) is mentioned in Halperins book?

It looks like Halperin talk "as if" neuroborreliosis (in most cases EARLY Lyme) is the same thing as a chronic (late) infection?

And since it looks like Halperin actually do this, I am not at all interested in that book.

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Re: Neuroborreliosis is not the same thing as late Lyme dise

Post by duncan » Wed 5 Sep 2012 22:11

I think your observation is accurate in an absolute sense, but the embedded issue rests in politics and nuance. If the CNS and brain are involved, usually that will suggest enough time has elapsed where the infection - and how one's immune system is coping - has changed to late stage. It's like a math equation, overlapping subsets. Ultimately, one can have late stage lyme without involvement of the CNS, e.g. cardiac involvement only, but I would wager that is rare. The flip-side is the CNS and brain involvement could occur within 30-60 days, not really qualify as late stage, and accordingly still be characterized as neuroborreliosis.

I hope I translated this correctly; my math credentials aren't so good these days. :)

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Re: Neuroborreliosis is not the same thing as late Lyme dise

Post by Spanky » Wed 5 Sep 2012 22:39

"Carina":
But (with the help from Rita) I have now shown that neuroboreliosis is NOT the same thing as late Lyme disease/stage 3 (in most cases).
Carina:

I KNOW that I have tried to direct your attention to this passage in the IDSA Guidelines several times:
The panel has differentiated between early and late neurologic Lyme disease in these guidelines, as is customary. There is little evidence to support a pathophysiological basis for this distinction, however, and differences may be related more to the degree of involvement [208, 217, 219].

That passage is found under the section heading: "Background and Diagnosis of Late Neurologic Lyme Disease". Notice that Halperin is one of the authors.

http://cid.oxfordjournals.org/content/4 ... ull#sec-28

Now, do you understand what that says?

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Re: Neuroborreliosis is not the same thing as late Lyme dise

Post by X-member » Wed 5 Sep 2012 23:03

This topic is not about what IDSA say.

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