LNE definitions of late and chronic Lyme disease

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Martian
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LNE definitions of late and chronic Lyme disease

Post by Martian » Wed 30 May 2012 18:26

LymeNet Europe's definitions of late and chronic Lyme disease

I am fed up with the ad nauseum/infinitum debate about the definition of "chronic Lyme disease"
that is interfering with other discussions on a continuous basis. Yes, the typically used definition is debatable, and one could argue that chronic and late disease are more or less synonyms when used with diseases in general and that this should be no different with Lyme disease. Yes, it creates confusion amongst both patients and physicians. And yes, I too have been confused for years: when one stated for example that chronic Lyme disease doesn't exist or is a questionable diagnosis, I thought they were saying that of late Lyme disease, thinking chronic = late. But let this not interfere with productive discussions.

I propose the following definitions to be used on this board, definitions that should match the de facto standard definitions as used in the medical literature and amongst experts:

Late Lyme disease = untreated (or "inappropriately" treated) later stage of Lyme disease.

Chronic Lyme disease = persistent symptoms associated with Lyme disease after "appropriate" antibiotic treatment, without clinical evidence of persistent Lyme disease.

NOTES:

* It's hard to draw a line between early and late Lyme disease. The first weeks at least are considered early Lyme disease. I guess later than a year is at least considered to be late Lyme disease.

*the term "appropriate" implies: antibiotic treatment with a currently recommended antibiotic regimen.

* Debatable is when exactly a case of late Lyme disease has been treated "appropriately", since in individual cases non-standard, repeated or longer courses, may be indicated.

Camp Other
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Re: LNE definitions of late and chronic Lyme disease

Post by Camp Other » Wed 30 May 2012 18:36

Good luck with this.

I think a number of us have tried to set the definitions already and these suggestions were duly ignored.

I wish the arguments over definitions would end, too, because they really distract from the main topic thread when they do come up.

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Spanky
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Re: LNE definitions of late and chronic Lyme disease

Post by Spanky » Wed 30 May 2012 19:02

"Martian":
Chronic Lyme disease = persistent symptoms associated with Lyme disease after "appropriate" antibiotic treatment, without clinical evidence of persistent Lyme disease.
The problem with that is that BOTH ILADS and the IDSA use the term "chronic Lyme disease" as connoting that the cause of the continuing symptoms is alleged continuing infection...and the IDSA strongly suggests that the term is a "misnomer" and confusing to the public on that basis.

If you don't follow that, only more confusion will follow.

I think that although somewhat cumbersome, one should simply refer to the post-treatment situation as: "chronic Lyme" or PTLDS.

Both.

X-member
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Re: LNE definitions of late and chronic Lyme disease

Post by X-member » Wed 30 May 2012 19:25

The European (and more educated physicians) term for late Lyme disease, is:

Chronic (or late) Lyme borreliosis.

I use this European term! And I follow the European definition for this, and this definition I also have posted in this forum.

What some people from US do, is that they use the term chronic Lyme disease when they instead talk about chronic (or late), persistent (= after treatment) Lyme borreliosis.

And other people from US, use the term chronic Lyme disease for (see also Spankys post): PTLDS.

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Re: LNE definitions of late and chronic Lyme disease

Post by X-member » Wed 30 May 2012 19:49

You can find info that I have posted about what CDC say, in the topic below:

"Use the correct term, PTLDS"

http://www.lymeneteurope.org/forum/view ... =11&t=3759

A quote:
Although often called "chronic Lyme disease," this condition is properly known as "Post-treatment Lyme disease Syndrome" (PTLDS).
Edit to add:

See also the term (s) that Dr MacDonald use on the link above!

Bagge
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Re: LNE definitions of late and chronic Lyme disease

Post by Bagge » Wed 30 May 2012 19:58

.
.
Page 233 of the text edited by J.J. Halperin, discussed here, entitled 'Lyme Disease: An Evidenced-Based Approach', defines PLDS as the following,
15.4. Post-Lyme Disease Syndrome

Post-Lyme disease syndrome (PLDS) refers to symptoms that continue for at least 6 months after initial diagnosis and appropriate treatment for proven Lyme disease (Wormser et al., 2006)
In slight contrast, the CDC uses the term PTLDS, which I find more descriptive. I suggest we use PTLDS with the above definition, instead of Martian's "Chronic Lyme disease" defintion of
Chronic Lyme disease = persistent symptoms associated with Lyme disease after "appropriate" antibiotic treatment, without clinical evidence of persistent Lyme disease.
Spanky wrote:The problem with that is that BOTH ILADS and the IDSA use the term "chronic Lyme disease" as connoting that the cause of the continuing symptoms is alleged continuing infection...and the IDSA strongly suggests that the term is a "misnomer" and confusing to the public on that basis.
I agree with Spanky. We should not use the term, "chronic Lyme disease" (with or without the quotes, Carina).
.
Last edited by Bagge on Wed 30 May 2012 20:12, edited 2 times in total.

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Re: LNE definitions of late and chronic Lyme disease

Post by X-member » Wed 30 May 2012 20:00

Bagge:
I suggest we use the above term, PLDS, and definition, instead of Martian's "Chronic Lyme disease"
I agree with Bagge (and CDC).

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Re: LNE definitions of late and chronic Lyme disease

Post by Camp Other » Wed 30 May 2012 21:27

What if one doesn't know the cause?

Is PTLDS an appropriate term to use in this instance?

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Re: LNE definitions of late and chronic Lyme disease

Post by X-member » Wed 30 May 2012 21:38

Henry have mentioned MUS (medically unexplained symptoms):

"Medically unexplained physical symptoms"

http://en.wikipedia.org/wiki/Medically_ ... l_symptoms

Often used in Sweden, BTW.

Bagge
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Re: LNE definitions of late and chronic Lyme disease

Post by Bagge » Wed 30 May 2012 21:43

Carina wrote:I agree with Bagge (and CDC).
Carina wrote:Henry have mentioned MUS (medically unexplained symptoms):

"Medically unexplained physical symptoms"


http://en.wikipedia.org/wiki/Medically_ ... l_symptoms

Often used in Sweden, BTW.
Do mine eyes deceive me? It is nice to read that Carina agrees. :D
.

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