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Re: Posttreatment Lyme disease syndrome?

Posted: Sat 7 Nov 2015 21:00
by X-member
Duncan wrote:
Some PTLDS might only have subjective symptoms. Some may have objective symptoms. Some have both.
Yes, of course some people with PTLDS can have objective symptoms (I have a Bells palsy that most likely never will go away). But are those symptoms included in the definition of PTLDS?

Re: Posttreatment Lyme disease syndrome?

Posted: Sat 7 Nov 2015 21:30
by duncan
There are some who believe that once a patient has received IDSA-recommended therapy that any and all symptoms fall under that PTLDS heading - even if the patient is 2T positive, or as in your case, has persistent Bell's Palsy.

I guess the only exception might be arthritis.

Personally, I think that is crazy. I don't set Lyme policy, though. :)

Re: Post-treatment Lyme disease syndrome?

Posted: Fri 9 Nov 2018 13:47
by X-member
Attention Lyme Community—WORDS MATTER!

https://www.linkedin.com/pulse/attentio ... che-thayer

A quote:
Why does Lyme Doctor Richard Horowitz use the terms Chronic Lyme Disease (CLD) and Post Treatment Lyme Disease Syndrome (PTLDS) as interchangeable when the terms contradict each other?

The National Institute of Health (NIH) and Centers for Disease Control and Prevention (CDC) define PTLDS as being subjective symptoms and psychosomatic illness. CLD refers to infection.

Re: Post-treatment Lyme disease syndrome?

Posted: Sun 11 Nov 2018 20:33
by X-member
Question to Richard Horowitz: Why are You Trading Post Treatment Lyme Disease Syndrome for the Reality of Persistent Infection?

https://www.linkedin.com/pulse/question ... he-thayer/

A quote:
Working Group Promotes Use of Post Treatment Lyme Disease Syndrome: There has been considerable concern over the fact that all the members of the Working Group—and members of some of the Subcommittees—are utilizing the term Post Treatment Lyme Disease Syndrome (PTLDS) to be synonymous with chronic Lyme disease (CLD) or persistent Lyme infection.
If I use the Swedish definitions of PTLDS, chronic (Lyme) borreliosis and persistent (Lyme) borreliosis, this woman claim that this US group say that PTLDS are synonymous with late Lyme disease (stage 3) and a still active borreliosis after treatment (ie treatment failure).

:roll:

Re: Post-treatment Lyme disease syndrome?

Posted: Mon 12 Nov 2018 1:01
by X-member
"ThruthCures" claim this on facebook:
The chronic illness that’s commonly called “chronic Lyme disease” or “post treatment Lyme disease syndrome (PTLDS)” is an immune deficiency condition.

If I use the Swedish definitions of chronic (Lyme) borreliosis and PTLDS, they claim that late Lyme disease (stage 3) and persistent symptoms after treatment that is not caused by a still active borreliosis (no matter what is the cause of those persistent symptoms) is an immune deficiency condition.

:roll:

Re: Post-treatment Lyme disease syndrome?

Posted: Mon 12 Nov 2018 3:58
by X-member
Dr Horowitz wrote the following about PTLDS on facebook (november 9, 2018):
Although it has been defined, the etiology of ongoing symptoms in PTLDS still remains controversial. Theories of why patients remain ill generally range from autoimmune reactions post infection to tissue damage and/or persistent infection of the spirochete and/or its parts.
I totally agree with Dr Horowitz on this!

Edit to add:

But Dr Horowitz also wrote this:
“We suggest that patients now be considered to have “Lyme-MSIDS” and believe that this term best describes the multiple biologic and biochemical abnormalities that can be present after an infection with Borrelia burgdorferi (whose etiologies go beyond tick-borne disease), causing chronic illness. Each patient is unique, and each treatment approach must be individualized...
Yes, this term is maybe better?

Re: Post-treatment Lyme disease syndrome?

Posted: Mon 8 Apr 2019 23:22
by X-member
Curr Opin Infect Dis. 2019 Mar 27. doi: 10.1097/QCO.0000000000000545. [Epub ahead of print]

Lyme neuroborreliosis.
Halperin JJ1,2.

Abstract
PURPOSE OF REVIEW:
To review the recent evidence clarifying the symptomatology and diagnosis of nervous system Lyme disease.

RECENT FINDINGS:
Two-tier testing combining pairs of ELISAs, using C6 or VlsE assays to replace second tier Western blots, may eliminate confusion about test interpretation. Cerebrospinal fluid (CSF) can be informative in diagnosing central nervous system (CNS) Lyme disease, not peripheral nervous system (PNS) disorders. CSF CXCL13 may provide useful adjunctive information in CNS infection; its specificity remains to be defined. Lyme encephalopathy is not indicative of CNS infection. Post treatment Lyme disease symptoms do not occur in patients who have had definite CNS Lyme infection. Whether post treatment Lyme disease symptom (PTLDS) is an actual entity, or reflects anchoring bias when commonly occurring symptoms arise in patients previously treated for Lyme disease, remains to be determined. Regardless, these symptoms do not reflect CNS infection and do not respond to additional antimicrobial therapy.

SUMMARY:
Serologic testing is robust in individuals with a priori likelihood of infection of greater than 2-6 weeks duration. Western blots provide useful confirmation of screening ELISAs, but may be replaced by second ELISAs. CSF testing, including CXCL13, may be informative in CNS Lyme, not PNS, and is generally normal in Lyme encephalopathy. PTLDS does not occur following CNS infection, and may not be a distinct entity.

PMID: 30921086 DOI: 10.1097/QCO.0000000000000545
https://www.ncbi.nlm.nih.gov/pubmed/30921086

Re: Post-treatment Lyme disease syndrome?

Posted: Sun 2 Jun 2019 1:18
by X-member
Lyme Disease
Eugene D. Shapiro, M.D.


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4492124/

A quote:
These are classified as post–Lyme disease symptoms if they persist for less than 6 months and as post–Lyme disease syndrome if they are disabling and persist for 6 months or longer.