Chronic Lyme disease ≠ Late Lyme disease

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

Post by X-member » Mon 15 Dec 2014 21:14

Duncan wrote:
That is not true. PTLDS includes ALL who have received treatment that continue to have symptoms, even if they have lab signs that support a diagnosis of ongoing active infection.
I don't include patients with signs of an active borrelia infection after treatment, when I talk about PTLDS.

duncan
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Re: Chronic Lyme disease ≠ Late Lyme disease

Post by duncan » Mon 15 Dec 2014 21:19

Maybe you don't, but I'm pretty sure the architects of PTLDS do include those with signs of active infection, including the usual diagnostic suspects like ELISA and WB and C6.

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Re: Chronic Lyme disease ≠ Late Lyme disease

Post by X-member » Mon 15 Dec 2014 21:49

Perhaps some other definition of "post-Lyme" is used in Sweden?

http://www.folkhalsomyndigheten.se/page ... 101-28.pdf

A quote (translated with google translate and partly be me):
Regarding post-Lyme disease syndrome (PLDS) the publications agree that it is a post-infectious condition,
without objective signs of infection after treatment for NB.
Last edited by X-member on Thu 18 Dec 2014 13:57, edited 1 time in total.

duncan
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Re: Chronic Lyme disease ≠ Late Lyme disease

Post by duncan » Mon 15 Dec 2014 22:02

Yes, I see what you mean.

Here is my concern: If this were the US crew using its version of PTLDS, even if they said it had to come without objective signs, I would not believe it.

Why? Because other than a culture, every positive objective test can be dismissed as background noise, as an immunological memory.

In my opinion, PTLDS will be used as a crude tool to hammer away any claims of Lyme following treatment. That includes late stage. Once treatment has been rendered, new rules get introduced, regardless of symptoms, regardless of diagnostics. It will no longer be about the patient.

Martian
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Location: Friesland, the Netherlands

Re: Chronic Lyme disease ≠ Late Lyme disease

Post by Martian » Fri 19 Dec 2014 20:08

X-member wrote:Martian wrote:
And who are to blame for hijacking the term "chronic Lyme disease"?
This I would really like to know.

Who on earth started this mess?
I think it were the so-called "llmds" and their supporting Lyme activists/patients, somewhere in the 1990s.

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Re: Chronic Lyme disease ≠ Late Lyme disease

Post by X-member » Sun 27 Sep 2015 23:45

Når skal Norge tilby adekvat behandling til flåttsyke? (blog)
(When will Norway provide adequate treatment for people who suffer from tick-borne diseases?)

http://koffiehart.blogg.no/1442944689_n ... lby_a.html

A translated quote::
IDSA vs. ILADS

There are two conflicting medical research communities in the approach to Lyme disease. ILADS and IDSA. Crux revolves around whether the Borrelia bacterium survives after 2-4 weeks of antibiotics.

In broad terms (read more on their websites for details):

- IDSA believes that symptoms after treatment, are late effects - not active infection (PTLDS).
- ILADS mean that symptoms after treatment, are treatment failure and persistent infection (chronic Lyme borreliosis), not late effects.
- IDSA also uses the term chronic Lyme borreliosis, but then for a prolonged borreliosis (over 6 months) that is not treated.
I don't know what to say about this.

X-member
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Re: Chronic Lyme disease ≠ Late Lyme disease

Post by X-member » Mon 28 Sep 2015 0:19

Maybe this also belong in this thread?

The International Lyme and Associated Diseases Society

http://www.ilads.org/lyme/ILADS_Guidelines.pdf

A quote:
Symptoms may continue despite 30 days of treatment (persistent Lyme disease). The patient may relapse in the absence of another tickbite or erythema migrans rash (recurrent Lyme disease), or be poorly responsive to antibiotic treatment (refractory Lyme disease).
Edit to add:

Is it really ILADS that call symptoms after treatment "chronic Lyme"?

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Re: Chronic Lyme disease ≠ Late Lyme disease

Post by X-member » Mon 28 Sep 2015 18:08

A study on patients with early (stage 2) neuroborreliosis is planned in Norway. They are going to test if 6 weeks oral Doxy is better than 2 weeks oral Doxy.

This is what NorVect say about that study on facebook:
For your information, Reiso is the advisor for The Norwegian National Advisory Unit on Tick-borne Diseases at Sørlandet sykehus and project leader for "BorrSci", a new research project that has gotten 25 millNOK (2,9mill Euro) from the Norwegian Government to investigate whether 2 or 6 weeks with Doxycyclin is the best treatment for Chronic Lyme disease.
https://www.facebook.com/norvect/photos ... =3&theater

Can a study on cases with early neuroborreliosis really be called a study on chronic Lyme disease?

duncan
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Re: Chronic Lyme disease ≠ Late Lyme disease

Post by duncan » Mon 28 Sep 2015 18:41

X-member, I share your concerns. How can early Lyme equate with chronic? Are these cases that already have received treatment? Even then, early is early...

Also, it would be nice if there were more studies looking specifically at late stage NB.

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

Re: Chronic Lyme disease ≠ Late Lyme disease

Post by Martian » Mon 28 Sep 2015 19:00

X-member wrote:A study on patients with early (stage 2) neuroborreliosis is planned in Norway. They are going to test if 6 weeks oral Doxy is better than 2 weeks oral Doxy.
Do you have a link to information about that study? From what little clues I could find in a few minutes it seems to be a study on Lyme neuroborreliosis (LNB).

X-member wrote:This is what NorVect say about that study on facebook:
For your information, Reiso is the advisor for The Norwegian National Advisory Unit on Tick-borne Diseases at Sørlandet sykehus and project leader for "BorrSci", a new research project that has gotten 25 millNOK (2,9mill Euro) from the Norwegian Government to investigate whether 2 or 6 weeks with Doxycyclin is the best treatment for Chronic Lyme disease.
https://www.facebook.com/norvect/photos ... =3&theater

Can a study on cases with early neuroborreliosis really be called a study on chronic Lyme disease?
Those are the words of someone from NorVect. Maybe (s)he is just mistaken. But maybe (s)he does have another definition of chronic Lyme disease. After all, there is no consensus on the definition of "chronic Lyme disease".

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