Ceftriaxone Pulse Dosing Fails to Eradicate Biofilm-Like Bb Persisters

Topics with information and discussion about published studies related to Lyme disease and other tick-borne diseases.
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duncan
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Re: Ceftriaxone Pulse Dosing Fails to Eradicate Biofilm-Like Bb Persisters

Post by duncan » Mon 5 Dec 2016 0:36

Go grab yourself a dictionary. Or go to Google. Look up "evidence". Look up "prove." Do you appreciate there is a difference?

Now, symptoms aside, ask the same question you asked me of anyone who gets diagnosed with early disseminated Lyme or late stage Lyme. Why are you demanding of me more than the signs the IDSA suggests clinicians secure from individuals who may have those two conditions?

There is something wrong with this process, and it isn't on my end. I satisfy the requirements for late stage Lyme. What confounds you is that I satisfy them AFTER IDSA-recommended treatment. What bothers me is that you demand more evidence from me simply because I've received treatment. Clearly, the treatment didn't work, and my labs support this conclusion. The failure is with the treatments, and this conclusion would not be questioned with most other diseases.

I am illustrative of this disconnect between what many believe are bloated claims of treatment success, and the actual failure that happens all too often - and I am only the tip of the iceberg. I am outside the thousands who don't satisfy the stringent and arguably unrealistic requirements for an initial Bb diagnosis. Despite this, still there are desperate attempts to stifle what seems to me as completely logical conclusions that infection persists despite treatment. Why? To what end?

The study around which this thread revolves provides additional strength to the litany of voices that have been opining the same thing for many years.

Henry
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Re: Ceftriaxone Pulse Dosing Fails to Eradicate Biofilm-Like Bb Persisters

Post by Henry » Mon 5 Dec 2016 15:23

Duncan: The main point is that the only thing you have to offer as to whether you have an active infection or not is that you say you have one. A positive 2-tier test in a previously treated patient could just as well reflect past exposure to Borrelial antigens. Such "evidence" would not be sufficient to convince a competent physician to consider treating your for an active infection using still different types and combinations of antibiotics for longer periods of time etc. That is why you are "stuck" in the position that you are in. So, you need a new method -- like the Ceres nanotrap test-- to prove that you have an active infection, as I said earlier.

Alternatively, and a possibility that makes a bit more sense, is that your symptoms -- which you have not yet described-- are due to some sort of tissue damage as a result of your initial infection. If that is the case, the answer would be to treat symptomatically with some sort of drug (anti-inflammatory agents), depending on the nature of your symptoms. However, such a possibility would not be consistent with the "relapses" that you say occur from time to time. One would think that such tissue damage -- if indeed present-- would be relatively constant, as is the case for osteoarthritis for example. But please don't think that your situation is typical of that related by the "thousands" of long-suffering patients you presume to represent. I have read many of their accounts which are quite different from yours. You are indeed unique, Duncan, as I have long suspected. Best for you not to generalize from your own experiences, which might some day be documented as a exceptional case report in some medical text book. I rest my case.

duncan
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Re: Ceftriaxone Pulse Dosing Fails to Eradicate Biofilm-Like Bb Persisters

Post by duncan » Mon 5 Dec 2016 16:19

Before you ride off into the sunset, Henry, let me set you straight on a couple of things.

I am not "just" 2T positive. Regardless, changing diagnostic rules post-treatment is ludicrous and dangerous -- for reasons I've already covered. A competent physician would evaluate labs and symptom clusters to render a diagnosis; taking the word of an entity or agency- of any sort - not to look behind the curtain is exactly NOT what a competent physician would do.

I personally would welcome a new test that can differentiate between and old and active infection. Better still would be a test that does not succumb to the same failings as the current diagnostic scheme.

Do I have tissue damage? I tend to agree with you that I do. A concern of mine is to ensure I don't incur more tissue damage. So if I am infected with TBD's, I think I need to be vigilant and assertive and proactive about that.

I'm not sure about what you mean by relapses. I have my share of perniciously constant symptoms, including neuropathies and headaches and dizziness and weakness and cognitive deficiencies. I also have recurrent symptoms, that come and go, like painful swollen knees.

I have it from a Lyme expert that I am not unique. (Sorry, Mom.) I think the only unusual thing about me is I actually satisfy the ridiculous Lyme diagnostic protocol.

Henry
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Re: Ceftriaxone Pulse Dosing Fails to Eradicate Biofilm-Like Bb Persisters

Post by Henry » Mon 5 Dec 2016 17:25

But I am telling you what a competent physician would do when confronting an individual such as you and reviewing your medical history, Duncan. Yes, this would also include making a clinical judgement. However, a clinical judgement is not based on "feelings and beliefs"; rather, it is a rational decision based on a large body of clinical data derived from peer-reviewed publications such as the more that 200 references cited in support of the statements made in the IDSA guidelines that are universally accepted by experts on Lyme disease.

The IDSA guidelines have been cited more than 1,000 times in peer-reviewed publications by experts on Lyme disease. If you don't believe that, do a PubMed search. Your views and experiences represent those of an extremely small but vocal minority. It would not be prudent to generalize.

dlf
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Re: Ceftriaxone Pulse Dosing Fails to Eradicate Biofilm-Like Bb Persisters

Post by dlf » Mon 5 Dec 2016 19:19

Henry, I have purposefully not contributed to this conversation because Duncan was so very eloquently engaging with you and trying to help you understand some basic deficiencies in your thought processes. However, I think you are completely wrong on this.

A competent physician would look at Duncan's current testing results, signs and symptoms and his medical history and then, providing there are no other available diagnoses that make sense and that would override the Lyme diagnosis, would ultimately conclude that if it looks like a duck, swims like a duck, quacks like a duck and waddles like a duck, it probably is a duck. Why would any competent doctor presume that a few weeks of treatment has magically transformed it into something other than a small aquatic bird of the family Anatidae?

Henry, why do you keep asking Duncan for proof of having an active infection? Why put the onus for proof on the sick, beleaguered and financially distressed patients who have difficulty working due to debility? This is one crazy mixed up notion you have that would demand that the patients should provide evidence for something that your colleagues have refused to even consider, much less study. As a medical microbiologist (presumably retired) it should have been your job to determine whether active infection remains or not. So far, with all the resources that have been spent to prop up the old myth that Lyme is easy to cure, you and your colleagues have not provided any proof (or even biomarkers) that would demonstrate that disseminated Lyme infections in any human beings have actually been eliminated with the IDSA recommended treatment, particularly the extremely pathogenic strains like 297, a human cerebrospinal fluid isolate found in Connecticut. Truly what have you and your colleagues accomplished over the years that provides genuine benefits to patients who remain ill? What have you accomplished other than providing life-time sinecures for yourselves?

I suspect you have been confined to your silo for far too long.........Take a look at the real world at some of your colleagues who are actually on the front lines and trying to help their patients. I posted some information on another thread about one such IDSA physician (Dr. Timothy Flanigan) who has been trying to follow IDSA policy and provide the kinds of supportive non-antibiotic treatment exactly as you have been advocating on this forum for quite some time.

http://www.lymeneteurope.org/forum/view ... 218#p44632

Here is a quote from his recent interview:
Dr. Flanigan did not treat Lennon, but he believes there needs to be more research done through clinical trials to help develop better testing and treatment for Lyme. He believes it may take researchers longer to find a cure for chronic Lyme than it took to find a way to stop HIV from replicating.

“We don’t have a cure, but we can put HIV in total remission by using our HIV medications,” says Dr. Flanigan. “We do not do as well with patients that have chronic Lyme because they continue to suffer the symptoms.”
Gee Henry, at least he recognizes that the patients he is seeing are not being well served.

Henry
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Re: Ceftriaxone Pulse Dosing Fails to Eradicate Biofilm-Like Bb Persisters

Post by Henry » Mon 5 Dec 2016 20:55

dlf: In other words, if other possible causes for the symptoms have been examined and ruled out, it must be Lyme disease. What else could it be? I know it when I see it.

Tell me, if it is so important to use ligands from strain 297 in diagnostic tests, why does IGenex not find new/extra bands in their WBs? Instead, they find the samebands that are revealed using B31 ligands. So what's the advantage? The main difference between their tests and those conducted by other labs is the liberal criteria they use. It requires the presence of fewer bands than those recommended by the CDC. Of course that will result is a higher percentage of positive tests ; however, such results are falsely positive. Except for a note published in a trade newsletter, they have no peer-reviewed comparative data to justify/validate their criteria, or the use of strain 297 ligands.

For your information, extensive and very sophisticated studies have been done to acquire evidence of a persistent infection in patients who believe that they have chronic Lyme disease. None has been found. So, it is not true that a concerted effort has not been made in that regard. The work of Bockenstedt, that I have referred to in previous postings, provides the best explanation for seropositivity in patients that have been correctly diagnosed and treated for Lyme disease. She is now doing clinical studies to expand upon her published studies using animal models of Lyme disease ( https://projectreporter.nih.gov/project ... I100191-04 ).

The reason why it is so difficult to find a cure for chronic Lyme disease is that such a disease does not exist as a clearly define clinical entity. Since the symptoms of patients who believe they have chronic Lyme disease do not necessarily have the same cause or causes, the search for a single "cure" is likely to be as productive as trying to fit all of them with the same pair of shoes of the same size. The only ones who will benefit from such a process are the "quacks" who peddle their unproven remedies to those foolish enough to trust them. And THAT'S the real shame of it all.

Henry
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Re: Ceftriaxone Pulse Dosing Fails to Eradicate Biofilm-Like Bb Persisters

Post by Henry » Mon 5 Dec 2016 22:39

One last point. People who have never done any scientific research and who have no first hand research experience, should not berate the efforts of those who have numerous original research accomplishments, and who can list many rigorously reviewed scientific publications in their resumes.

duncan
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Re: Ceftriaxone Pulse Dosing Fails to Eradicate Biofilm-Like Bb Persisters

Post by duncan » Mon 5 Dec 2016 22:58

I have conducted research and written research reports, and I have directed research projects. I have had my results published many, many times. Companies as well as governments have paid as much as $4,000 for a single copy of one of my reports.

So I know a thing or two about research, Henry, and I know what can qualify as good insight and good policy, and what distinguishes them from bad.

Relative to your last post to me:

1) Whatever are you talking about with your "feelings and beliefs"? My clinical diagnoses rest upon bedrock objective data that include, but are not limited to, the CDC's 2T.

2) I cannot speak to how my experiences stack up with others, but I will hazard a guess that many of my opinions are not limited to an "extremely small" minority. I suspect there is a very substantial and growing population who are convinced something is terribly wrong with the way Lyme and other TBDs research and policy have been handled these last 20+ years. Fortunately, new researchers are stepping up to the plate, and things are beginning to change.

3) I'll wager my expert - who said I was not all that unusual - is bigger than your expert. :) Unfortunately, that implies there may be many Borrelia sufferers still sick following treatment, even with positive titres, possibly because they, like me, have been refused at times additional treatment. Do you know that due to ridiculous Lyme rules I had several embedded deer ticks removed from me clinically, and I was refused abx prophylactically DUE TO RULES??? These were embedded deer ticks! They were removed by doctors in a Lyme endemic region! I can go on and on. Things need to change. As long as the status quo is indulged, the patient body count will climb.

Henry
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Re: Ceftriaxone Pulse Dosing Fails to Eradicate Biofilm-Like Bb Persisters

Post by Henry » Tue 6 Dec 2016 0:02

Duncan: And still, after all is said and done, you can not prove/demonstrate that you are actively infected in contrast to the phenomenon described by Bockenstedt in which dead Borrelia --or their fragments-- are able to elicit the synthesis and release of inflammatory cytokines in situ. that may be responsible for the symptoms some patients experience.
Look, I'm trying to help you -- don't you understand that.

Incidentally, my comments re: research experience were directed to dlf in response to her "snotty" remarks that clearly were in bad taste. Any one who does not know about the reciprocal expression of OspA and OspC in vivodoesn't know much about Lyme disease and shouldn't be writing about it -- or criticizing the good work of others.

duncan
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Re: Ceftriaxone Pulse Dosing Fails to Eradicate Biofilm-Like Bb Persisters

Post by duncan » Tue 6 Dec 2016 0:25

Henry, about 350,000 US citizens will be diagnosed with Lyme in the next 12 months. How many of them do you think will be forced to prove they are actively infected, as in via culture? Seriously, where does it say in the IDSA Guidelines that prospective patients must prove ACTIVE infection, when indeed the only FDA-approved tests are indirect? Do you realize the scope of the inherent contradictions in your stance?

And are you going to suggest a cytokine storm that lasts years is striking ten's of thousands of people once infected with Lyme?

Occam's razor, Henry. The potential answer is simple and obvious: Infection may persist in some people once the disease progresses to late stage Lyme despite treatment - conventional or otherwise. As a society we desperately need to come to grips with this possibility so we can get better at fundamentals like distinguishing old vs active infections, and generate more effective treatments that cover everybody ever infected.

We need to do the homework. There are just too many sick people and too many unanswered questions that tie back to ticks biting humans. Hey, what if you're right? Do you think patients will care what is making them sick? They will rejoice if they know definitively what is making them sick. They just want to get better. If immune modulators are called for instead of abx, well, then great! - so long as they are appropriate and they work. That's all patients are asking: Genuine and robust research that lead to diagnostic and treatment protocols that work for everyone. Yes, there are differing opinions as to what the culprit(s) are, but the end point is getting people better - or it should be. To do that, we need to look harder than we have been, and not blindly accept what may prove to be misguided dogma.

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