Persistent Lyme Empiric Antibiotic Study Europe (PLEASE)

Medical topics with questions, information and discussion related to Lyme disease and other tick-borne diseases.
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ChronicLyme19
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Re: Persistent Lyme Empiric Antibiotic Study Europe (PLEASE)

Post by ChronicLyme19 » Tue 28 Apr 2015 17:30

Martian wrote:Subjects with "multiple issues and co-infections, not just Lyme" were excluded from the study:

Some of the exclusion criteria are:
  • Subjects with a known diagnosis of HIV-seropositivity or other immune disorders. (No HIV serologic testing is required for the study).
  • Subjects with positive syphilis serology or signs of other spirochetal diseases.
  • Subjects with moderate or severe liver disease defined as alkaline phosphatase, ALAT, or ASAT greater than 3 times upper limit of normal.
  • Severe physical or psychiatric co-morbidity that interferes with participation in the study protocol, including previous medical diagnosis of rheumatic conditions, chronic fatigue syndrome or chronic pain conditions as well as insufficient command of the Dutch language.
  • Co-morbidity that could (partially) account for the symptoms of the subject (e.g. vitamin B12 deficiency, anemia, hypothyroidism).
However, I don't think they have (extensively) checked for possible tick bite co-infections, at least not all, let alone other diseases and issues. So, some subjects may have had an unknown comorbidity, but do you want to suggest all of them had? If so, why would you think so?
So they are already ruling out part of the population with persistent lyme in which additional antibiotics could help, those with underlying medical conditions. And yes I agree with you, because the co-infection testing is so piss poor how do you really know you've even ruled out all those folks? You treat the lyme, but not the co-infections of course they are not going to report improvement, they're still sick! Pulling one nail out of ten isn't going to show you much improvement.

By definition they have chosen a very select group of individuals who have already failed probably many of the standard lyme treatments, so why are we expecting a simple solution to suddenly help? My personal opinion is that the reality of persistent lyme has many shades of gray. Will additional antibiotics help some of the CL population, yes. Is it going to help everyone, no? Do we need individualized treatment and through investigation for every patient? Yes. Trying to treat everyone the same with these types of cases does not work.

I'm not really sure how useful this study is, when they're already ruling out parts of the persistent lyme population. Can't we have a study that encompasses ALL persistent lyme patients? Then we could study them as whole and see if we can find subpopulations to target, like untreated co-infections, immune disorders, permanent damage, autoimmune issues, etc. And then see if we can start tailoring therapy to some of these subpopulations.
Half of what you are taught is incorrect, but which half? What if there's another half missing?

X-member
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Re: Persistent Lyme Empiric Antibiotic Study Europe (PLEASE)

Post by X-member » Wed 29 Apr 2015 1:03

From the first post:
The purpose of the study is to establish whether prolonged antibiotic treatment of patients diagnosed with proven or presumed PLD (as endorsed by the international ILADS guidelines) ...
PLD stands for persistent Lyme disease* (in Europe: persistent Lyme borreliosis). More abx should actually have effect on this, so did they really include patients with proven persistent (Lyme) borreliosis?

*Source: https://clinicaltrials.gov/ct2/show/NCT01207739

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Re: Persistent Lyme Empiric Antibiotic Study Europe (PLEASE)

Post by X-member » Wed 29 Apr 2015 1:16

I give you a study (or actually summary) of patients with proven persistent Lyme disease/borreliosis:

Prolonged antibiotic therapy in PCR confirmed persistent Lyme disease

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

94,4 % of the cases had effect from more abx.

Martian
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Re: Persistent Lyme Empiric Antibiotic Study Europe (PLEASE)

Post by Martian » Wed 29 Apr 2015 1:50

X-member wrote:From the first post:
The purpose of the study is to establish whether prolonged antibiotic treatment of patients diagnosed with proven or presumed PLD (as endorsed by the international ILADS guidelines) ...
PLD stands for persistent Lyme disease* (in Europe: persistent Lyme borreliosis). More abx should actually have effect on this, so did they really include patients with proven persistent (Lyme) borreliosis?

*Source: https://clinicaltrials.gov/ct2/show/NCT01207739
X-member wrote:I give you a study (or actually summary) of patients with proven persistent Lyme disease/borreliosis:

Prolonged antibiotic therapy in PCR confirmed persistent Lyme disease

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

94,4 % of the cases had effect from more abx.
Are you suggesting that most or all of the study participants in the PLEASE study probably didn't have persistent Lyme disease/borreliosis?

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Re: Persistent Lyme Empiric Antibiotic Study Europe (PLEASE)

Post by X-member » Wed 29 Apr 2015 1:57

Martian wrote:
Are you suggesting that most or all of the study participants in the PLEASE study probably didn't have persistent Lyme disease/borreliosis?
Yes, that is what I think. Remaining symptoms after treatment without any signs of an active infection also exists.

Martian
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Re: Persistent Lyme Empiric Antibiotic Study Europe (PLEASE)

Post by Martian » Wed 29 Apr 2015 2:03

X-member wrote:Yes, that is what I think. Remaining symptoms after treatment without any signs of an active infection also exists.
What are the signs of an active infection?

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Re: Persistent Lyme Empiric Antibiotic Study Europe (PLEASE)

Post by X-member » Wed 29 Apr 2015 2:08

Signs of a still active, ongoing borrelia infection?

http://www.lymeneteurope.org/forum/view ... =11&t=5226

Some quotes:
...when the patients symptoms recur shortly! – when symptoms reappear...
.... then suspect a relapse of ACTIVE Borreliosis
CURRENT SYMPTOMATOLOGY especially when in a characteristic cyclical pattern...

Martian
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Re: Persistent Lyme Empiric Antibiotic Study Europe (PLEASE)

Post by Martian » Wed 29 Apr 2015 2:38

X-member,

I don't think those signs qualify for a proven persistent (Lyme) borreliosis.

How can we establish a persistent Lyme borreliosis, an active ongoing Borrelia infection?

In other words, how can we separate proven PLD from presumed PLD?

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ChronicLyme19
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Re: Persistent Lyme Empiric Antibiotic Study Europe (PLEASE)

Post by ChronicLyme19 » Wed 29 Apr 2015 2:44

Only way to do that is have accurate tests. Unfortunately, we have none.

Until then, you have to continue working with your doctor to rule out other conditions and see what makes the best sense for your case. Hence, until we have testing that 100% proves whether or not you still have the disease, your doctor should be allowed to treat you on an individual basis, not by some blanket guidelines.

But yes, it is quite possible those in the study had something else (coinfections, other medical conditions), or had persisting symptoms from permanent damage. The already sorted out those with immune deficiencies, which were probably the highest risk group for actually having a persisting infection.
Half of what you are taught is incorrect, but which half? What if there's another half missing?

duncan
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Re: Persistent Lyme Empiric Antibiotic Study Europe (PLEASE)

Post by duncan » Wed 29 Apr 2015 12:24

Yes, I'm not quite sure whether this study speaks to anything more than the Klempner study did, or resolved the issues presented by that effort.

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