Does Chronic Lyme really exists

General or non-medical topics with information and discussion related to Lyme disease and other tick-borne diseases.
alfon
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Joined: Mon 27 Apr 2015 1:54

Does Chronic Lyme really exists

Post by alfon » Mon 4 May 2015 17:56

I have asked this question on Stack Exchange Health, which is on beta and soon it will be open to google listings,

can someone provide a good answer? thanks!

http://health.stackexchange.com/questio ... ally-exist

Martian
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Location: Friesland, the Netherlands

Re: Does Chronic Lyme really exists

Post by Martian » Mon 4 May 2015 18:03

You received a quite good answer already.

To be able to answer that question properly, one first needs to have a definition of "chronic Lyme".

What do you mean when you say "chronic Lyme"?

alfon
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Re: Does Chronic Lyme really exists

Post by alfon » Mon 11 May 2015 20:02

Well, it was more of a question regarding the politics of the disease, and, by chronic I mean:

http://en.wikipedia.org/wiki/Chronic_condition

The question is, has LD already been officially recognized as chronic, and if the answer is yes, has anyone given a 'second thought' to PTLDS?

Regards

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

Re: Does Chronic Lyme really exists

Post by X-member » Mon 11 May 2015 20:50

alfons wrote:
The question is, has LD already been officially recognized as chronic...
From the link you posted:
The term chronic is usually applied when the course of the disease lasts for more than three months.
http://en.wikipedia.org/wiki/Chronic_condition

From IDSA:s guidelines:
Late Lyme Disease
http://www.idsociety.org/uploadedfiles/ ... isease.pdf

So, the definition of chronic Lyme that you mean exists.

RitaA
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Re: Does Chronic Lyme really exists

Post by RitaA » Mon 11 May 2015 21:40

alfon wrote:Well, it was more of a question regarding the politics of the disease, and, by chronic I mean:

http://en.wikipedia.org/wiki/Chronic_condition

The question is, has LD already been officially recognized as chronic, and if the answer is yes, has anyone given a 'second thought' to PTLDS?

Regards
Over the past few decades, a lot of thought has been devoted to the issue of possible chronic/persistent Lyme disease versus PTLDS (post-treatment Lyme disease syndrome).

I'm hoping the following at least partially answers your question. I don't think things have changed that much (if at all) in the past two years since this was written:

http://campother.blogspot.com/2013/05/p ... ronic.html
TUESDAY, MAY 28, 2015

Persistence and Politics in Chronic Lyme Disease Research


The story of the controversy over Lyme disease research and treatment guidelines seems so strange to me, I wouldn't have believed it if I hadn't gotten Lyme disease and ended up looking into it myself.

[snip]

A Primer On The Lyme Disease Controversy

Before I proceed, for the uninitiated, here's the controversy in Lyme disease in a nutshell:

Many patients and some doctors believe that three weeks of antibiotic treatment is not enough and some patients need longer term antibiotic treatment. They think the bacteria, Borrelia burgdorferi, which causes Lyme disease can survive the recommended amount of antibiotics advised in the IDSA's guidelines. The IDSA and other organizations think that the recommended amount of antibiotics is adequate in the vast majority of cases, and giving patients longer courses of antibiotics is generally regarded as a bad idea. They have stated that chronic Lyme disease* is most likely a post-Lyme syndrome which is autoimmune in nature. The IDSA Lyme disease panelists view these patients' doctors as acting irresponsibly and taking unfair advantage of people who are most likely sick with something other than Lyme disease. The doctors and their patients disagree vehemently with the IDSA panel's position. It has become very heated from there.

* It should be noted that the use of terms such as "chronic Lyme disease", "post-Lyme disease (syndrome)", and "post-treatment Lyme disease" are often used interchangeably and can cause confusion. "chronic Lyme disease" has been used in the past by American researchers to mean "chronic infection" and continues to be used by the NIAID in the US. In Europe, "chronic Lyme disease" is used to mean "late stage infection". In America today, "chronic Lyme disease" has been used by the Lyme disease patient community to mean a chronic infection with Lyme disease Borrelia bacteria - where the patient has received at least some antibiotic treatment yet continues to have symptoms. "Post-Lyme disease (syndrome)" has been used by the IDSA Lyme disease panel and its colleagues to denote a presumed autoimmune-like condition that patients can develop after having a bonafide case of Lyme disease. "Post-treatment Lyme disease" is used by some doctors and researchers as a form of "non-partisan" terminology that tries to side-step the infection/autoimmunty debate for causation. (Sorry for any confusion. I'm confused too sometimes.)

alfon
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Re: Does Chronic Lyme really exists

Post by alfon » Tue 12 May 2015 0:10

Thank you very much guys, appreciate.

On the other hand, quite depressing :roll:

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

Re: Does Chronic Lyme really exists

Post by X-member » Tue 12 May 2015 20:02

Persistent, active borrelios after treatment (incorrect called "chronic Lyme" by some people, mainly from US) also exists.

Prolonged antibiotic therapy in PCR confirmed persistent Lyme disease

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

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ChronicLyme19
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Re: Does Chronic Lyme really exists

Post by ChronicLyme19 » Tue 12 May 2015 20:12

X-member wrote:Persistent, active borrelios after treatment (incorrect called "chronic Lyme" by some people, mainly from US) also exists.

Prolonged antibiotic therapy in PCR confirmed persistent Lyme disease

http://www.grin.com/en/e-book/166179/pr ... me-disease
Yes, a good starter is to read through the 27 studies listed in slide 15 of the latest LymeDisease.org survey.

"Evidence for persistent B. burdorferi infection following 2-4 weeks treatment for Lyme disease in humans*"
http://www.lymedisease.org/wp-content/u ... -20151.pdf
Half of what you are taught is incorrect, but which half? What if there's another half missing?

RitaA
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Joined: Thu 1 Jul 2010 8:33

Re: Does Chronic Lyme really exists

Post by RitaA » Tue 12 May 2015 23:19

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3636972/
Int J Gen Med. 2013; 6; 291-306

Published online 2013 April 2013

Review of evidence for immune evasion and persistent infection in Lyme disease

Keith Berndston

[Snipping to last paragraph, and please excuse any typos.]

Based on well-designed post-treatment animal studies and ongoing delineation of Bb’s mechanisms for host immune evasion and persistence, we can reasonably conclude that some, possibly many, chronic LD patients suffer from symptoms related to persistent infection with Bb. As inevitably happens in the evolution of scientific ideas, new research proves that the reality is more complex than we thought, and the time has now come to move beyond the divisiveness of the past into a more reality-based paradigm for research, education, and patient care. The question is no longer whether LD can survive an antibiotic challenge in order to become a persistent infection. High quality studies show not only that it happens, but they also show how it happens, and why we should not feel surprised that it happens. Our task in the new era is to determine which patients suffer from persistent LD, and to keep pressing for evidence-based wisdom to guide the physicians called upon to treat them.
There are 150 articles listed in the Reference section, and despite very critical comments by both hv808ct and henry in the undernoted thread, I wonder if it might be a good introduction/summary for someone fairly new to Lyme disease. Any thoughts, ChronicLyme19?

“Immune Evasion/Persistent Infection by B. burgdorferi”

http://www.lymeneteurope.org/forum/view ... f=5&t=4771

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ChronicLyme19
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Location: NY, USA

Re: Does Chronic Lyme really exists

Post by ChronicLyme19 » Wed 13 May 2015 0:07

Oh, this looks like a good read. Thanks!

In my mind, it is not a question of does it or can it persist; It most certainly can. The real questions are along the lines of:

Why does it persist in some people?
How many does it persist in/rate at which it persists?
How can we figure out if a patient has an ongoing infection, other co-infection, permanent damage, other medical condition, some combo of the above or something we haven't thought of yet.
How do we treat those in which it truly persists and causes ongoing symptoms? Can this subset of people be cured?
Half of what you are taught is incorrect, but which half? What if there's another half missing?

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