Thoughts/Reflections on LD Awareness Protest

General or non-medical topics with information and discussion related to Lyme disease and other tick-borne diseases.
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RitaA
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Thoughts/Reflections on LD Awareness Protest

Post by RitaA » Tue 20 May 2014 8:21

I think Camp Other has done an excellent job of summarizing the ongoing issues surrounding Lyme disease -- and especially from the viewpoint of patients who continue to suffer despite treatment:

http://campother.blogspot.com/2014/05/o ... ns-on.html
Monday, May 19, 2014

Op/Ed: Thoughts And Reflections On Worldwide Lyme Disease Awareness Protest

duncan
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Re: Thoughts/Reflections on LD Awareness Protest

Post by duncan » Tue 20 May 2014 12:28

I agree, RitaA.

Talk about deliberate, CO navigates readers through the major issues in a lean and measured fashion. It's easy to follow. It's easy to understand , too - and yet it doesn't condescend.

As usual, Camp Other includes some observations I had either forgotten, or never really understood completely, and it is done somehow in a way that I feel more comfortable about important stuff (for me at least, some of that stuff is jarringly relevant).

There's a lot of information at play here, and it is all accessible and unintimidating.

Well done, Camp Other.

Camp Other
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Re: Thoughts/Reflections on LD Awareness Protest

Post by Camp Other » Tue 20 May 2014 16:35

Thanks, RitaA. Thanks, duncan.

I think one major point I wanted to make that may or may not have been noted is that there is more than one position people can take in how to approach protesting existing IDSA treatment guidelines.

The position most with chronic Lyme disease are familiar with is to protest that the 2006 guidelines don't specifically encourage doctors to use longer term treatment with antibiotics for individual cases, and that is what many protesting would like to see happen.

However, one can protest from a broader perspective on the issue as well or instead of this one: The existing guidelines for treatment simply don't work well for a sizable minority. Therefore, better treatments are needed and the research to find them.

I thought that this is something that needs to be said at baseline: "Treatments are failing under the 2006 guidelines. Examples are there. We need better treatments."

I don't know if that means we need new antibiotic development or a combination of an antibiotic and a metabolite (something I think Dr. Kim Lewis is working on regarding persister cells - and although Clp is in Borrelia burgdorferi genome, it doesn't react to ADEP4 so something else will need to be found - I was discussing this with microbiologists yesterday) or an immune modulating drug or something else entirely.

People can continue to use what they're using now if it helps and there's improvement. But I also think that we can do better. If Borrelia burgdorferi persists somehow then a new approach is needed which nips that in the bud. Or, if as some researchers propose, the bacteria is "stuck" somehow as in amber theory, then there has to be a method of breaking it down so it stops producing this assault on the body. Development of both may be necessary.

Either way, whatever is happening - we need more treatment options. And more investigation into the problem.

duncan
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Re: Thoughts/Reflections on LD Awareness Protest

Post by duncan » Tue 20 May 2014 17:14

"Development of both may be necessary".

Yep. Agreed. I don't want to be a naysayer, however, I don't see treatment problems/remedies gaining much traction till agencies and organizations like the IDSA and NIH and CDC resolve their respective difficulties with the concept of persistence. Persistence of Bb, persistence of immune activation, persistence of atypical biomarkers, and, of course, persistence of symptoms.

I glance over the list of current studies in clinicaltrials.gov, and I don't get the feeling they are on the same page as many of us.

For me, a grim indicator is the lack of studies directed at Late Stage Lyme treatment, or even diagnosis. Even the IDSA admits Late Stage Lyme treatment may be more difficult, and in fact incomplete. So, what is the NIH doing to help those individuals that fall under that IDSA observation? Where are the treatment studies?

Camp Other
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Re: Thoughts/Reflections on LD Awareness Protest

Post by Camp Other » Wed 21 May 2014 6:12

duncan wrote:"Development of both may be necessary".

Yep. Agreed.
Nods.
duncan wrote: I don't want to be a naysayer, however, I don't see treatment problems/remedies gaining much traction till agencies and organizations like the IDSA and NIH and CDC resolve their respective difficulties with the concept of persistence.
I get that these organizations may have an issue with supporting persistent infection with Lyme disease. They haven't supported a persistent infection model for some time. But the strange thing about the situation to me is that independently they haven't even tried to develop non-antibiotic treatments for those with persisting symptoms - such as immune modulating drugs or something completely novel.

They have known for ages two things, for certain:

1) That 10-20% of Lyme disease patients develop persisting symptoms after initial 2006 IDSA Lyme panel guidelines treatment.

and

2) That those most seriously affected have a condition with equally poor quality of life indicators and on par with osteoarthritis and congestive heart failure. (this was stated way back in the Klemperer trial)

Knowing those two facts... Why hasn't more research been funded which examines this group of patients more and tracks early stage Lyme disease patients who are treated and go on to develop persisting symptoms later? Why hasn't more research been funded for novel treatment therapies?

If they were not supporting a persistent infection model of Lyme disease, then why didn't they do more research which supported their hypothesis or hypotheses of what they thought was going on?

And if the answer was, they didn't have a clue what was going on... Then why didn't they fund more studies to answer that question?

Why is Lyme Research Alliance funding Dr. Kim Lewis' research and his team to do persister cell research - which they presented at ASM2014 - and why didn't the NIH fund a study like this AGES ago?

Why is it a treatment like VGV-L is privately funded and no one - not anyone from the ALDF, the IDSA, or their colleagues - has had anything to say about it, positive or negative? Not anything like, "Good to see research in this direction as we don't support long-term antibiotic use". No articles on their web site. No interviews. Nothing. Doesn't anyone here find it strange that they wouldn't mention developing treatments along the lines of VGV-L?

Why have things been stuck for so long? Has it really been just politics? No one wants to touch Lyme disease? Is it because so few people want to work on Borrelia because it's a pain in the ass to work with in the lab? What happened?

So I have lots of questions, as you can see. And I'm not alone. A number of people I talk to think that certain studies could have been conducted sooner than they were to get answers that would get us much further along in understanding Borrelia burgdorferi sl (and now Borrelia spp) and what it does to people.
duncan wrote: Persistence of Bb, persistence of immune activation, persistence of atypical biomarkers, and, of course, persistence of symptoms.

I glance over the list of current studies in clinicaltrials.gov, and I don't get the feeling they are on the same page as many of us.

For me, a grim indicator is the lack of studies directed at Late Stage Lyme treatment, or even diagnosis. Even the IDSA admits Late Stage Lyme treatment may be more difficult, and in fact incomplete. So, what is the NIH doing to help those individuals that fall under that IDSA observation? Where are the treatment studies?
No, I don't think they are on the same page as many of us. But what's so weird is... I don't see as much evidence as I thought I would that they are on their OWN page regarding post-treatment Lyme disease or post Lyme disease syndrome (to use terms they're more comfortable with, and which either are vague about causation or clearly "post").

Regarding late stage Lyme disease.... That's its own kettle of fish. When you refer to the late stage studies that are cited in the 2006 IDSA guidelines, the treatment outcomes don''t sound all that fantastic... Lingering symptoms, neurological problems, pain - and people enrolled were retreated; some relapsed. Patients didn't fully recover and go back to their baseline.

And this is the point where I question what happened: How did those conducting the study and who wrote up these guidelines draw the conclusion that treatment was actually adequate? I want to know what the decision making process was. I am damned curious.

And while I know there has been an autoimmune component to Lyme arthritis, more recent research has pointed out the condition is somewhat closer to a lysosomal storage disorder. I didn't see that coming.

At the same time, numerous documents I've read have stated (contrary to the phrase used elsewhere that post Lyme/post treatment Lyme/chronic Lyme is an autoimmune disorder) that chronic Lyme/other labels is NOT an autoimmune disorder and there isn't evidence to support that hypothesis.

So this makes for very convoluted interesting reading which makes me want to belly up to the bar and slam back a few. I can't keep reading this stuff and remain sober for long.

duncan
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Re: Thoughts/Reflections on LD Awareness Protest

Post by duncan » Wed 21 May 2014 12:34

I think there are some individuals within the mainstream Lyme community that would prefer that chronic Lyme and Late Stage Lyme were no longer topics they were forced to address.

I look to what happened to other disenfranchised illnesses like ME/CFS and GWS, and I wonder if anything similar could transpire within our group, to the sickest of us.

Anybody got any friends or know people of influence over at the IOM?

I am glad to see unilateral extramural efforts to research Lyme and its lasting impacts on its sufferers, because I don't place a lot of trust in the current efforts coming from govt and much of academia.

Camp Other
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Re: Thoughts/Reflections on LD Awareness Protest

Post by Camp Other » Wed 21 May 2014 19:25

duncan wrote:I think there are some individuals within the mainstream Lyme community that would prefer that chronic Lyme and Late Stage Lyme were no longer topics they were forced to address.
That may be the case, but they are realities that need to be faced. And the evidence is there: People advance to late stage Lyme disease. People sometimes have only a mild onset of early Lyme disease only to later experience advanced late stage symptoms. Some people are completely asymptomatic for Lyme disease early on and have late stage Lyme disease symptoms later. This is well documented, and the issue of asymptomatic cases is mentioned as being problematic in the massive tome on Borrelia by Horizon Press, too - microbiology books and not just papers on infectious disease by infectious disease specialists.

Chronic Lyme or post-treatment Lyme is an area of contention. Debate. And some people say there is no debate and the problem is already known on both sides of that debate. The funny thing is, the more I look around and talk to people, it seems infectious disease doctors are more likely to say the infection cannot persist and microbiologists say they find the situation "interesting" and that more research needs to be done to understand what Borrelia burgdorferi does before we can truly understand how best to treat people with persisting symptoms.

More microbiologists are agnostic about causation, some think persistent infection may play a role in chronic Lyme/post treatment Lyme disease patients, and others aren't so sure what's going on but the immune system plays some role. And... that's something. It's an admission something is going on even if it's uncertain what it is. That's the position of a good scientist - note that something unusual is going on, collect data, ask questions, seek answers.

Does Borrelia persist? Hey, let's find out if it has a persister cell population. So Dr. Kim Lewis' team investigates, and they've found a small persister population of Borrelia burgdorferi in vitro. What does that mean in vivo? The team is working on that question. But we also have a number of past studies in animal models which demonstrate that at least in those animal models, Borrelia burgdorferi can persist past initial antibiotic treatment. And now, we have one xenodiagnostic case of persistence in a PTLDS patient on record.

What's going on here? Which of Koch's Postulates need to pass muster now?
duncan wrote: I look to what happened to other disenfranchised illnesses like ME/CFS and GWS, and I wonder if anything similar could transpire within our group, to the sickest of us.

Anybody got any friends or know people of influence over at the IOM?
Are you aware of what the IOM did regarding ME/CFS in the past two years? Lots of patients were upset about it. The IOM apparently decided they were going to spend $1m on coming up with a new case definition for ME/CFS and advocacy groups and patients were not happy with this decision because case definitions exist which are already suitable. It is patients and advocacy groups' position that money would be better spent on causation studies and treatment. Sound familiar?
duncan wrote: I am glad to see unilateral extramural efforts to research Lyme and its lasting impacts on its sufferers, because I don't place a lot of trust in the current efforts coming from govt and much of academia.
Not sure I follow you... Is it that you don't trust all efforts from government and academia or that you're selectively trusting efforts from them? Because as it stands, all that research Dr. Stephen Barthold did on persistence in the past was NIH funded. And Dr. Kim Lewis and his team are from Northeastern University. The VGV-L project is also a venture between private industry and academic researchers. There isn't much I can think of it terms of an entity doing completely self-contained research privately.. or at least very few. Somewhere, somehow along the line, academic researchers are involved in the chain if not government funded ones and to large degree those are one and the same.

duncan
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Re: Thoughts/Reflections on LD Awareness Protest

Post by duncan » Wed 21 May 2014 20:08

Late stage Lyme? Well, there has been talk about eliminating stage distinctions in Lyme. If that comes into play, late stage Lyme falls by the wayside. Camp Other, just because evidence has been obtained about ANY disease or disease stage does not necessarily mean that evidence won't get buried or be eclipsed by new priorities. Who defines those priorities? Agencies like the NIH. Big brand academic institutions like Harvard and Yale and Duke. I am sure you are familiar with the 4000 papers that demonstrate the biological underpinnings of ME/CFS; some coming from NIH studies, some from academic powerhouses. Those mean virtually NOTHING now that the HHS dept has shoveled off the disputed illness to the IOM.

It is good that debate is out in the open regarding chronic Lyme. Unfortunately, public debates can go black very quickly. History has shown that with both GWS and ME/CFS. Post-treatment-lyme, chronic Lyme, post-Lyme syndrome - all fodder for a new psych somataform disorder label. You see that new study out of the UK to redefine sero-negative cases of Lyme? Can you see where that might lead?

I am familiar with what the IOM did with ME/CFS, or rather what they are trying to do. I am aware of how this was arranged behind the community's back after assurances from HHS that it would not seek out the IOM. I am aware of the preponderance of non-ME/CFS experts on the IOM committee charged with "defining" ME/CFS. I am aware of the signature of 30 ME/CFS experts, internationaly recognized experts that publicly condemned the back door move by the govt to embrace the IOM as its tool. I also am aware of the outrage and outcry by vets at what the IOM did to GWS definition.

I am concerned that if it can happen to them, despite boatloads of evidence discovered by leaders in those respective diseases, what prevents it from happening in the Lyme community? I am concerned because TODAY, NOW, I don't see the types of research coming out of the NIH that I think should be for late stage cases. Same with chronic lyme. I am concerned because of the resistance from researchers at world-renowned universities who crusade, it seems to me, against new treatment research, or even new diagnostics. When you have money and legacy concerns and politics and liability fears converge, good substantive research just might not carry enough clout to keep from being brushed under the rug. Don't forget those 4000+ ME/CFS papers that may just be left blowing in the wind.

I am aware that some universities are doing work that flies in the face of these mainstream forces, and those kinds of institutions and individuals are who I was referencing when I said unilateral and extramural - I think I misused extramural.. I think Tulane does good work, and Stanford and another California school, and Kim Lewis is doing some cool stuff evidently. And Texas, too, with that immune agent.

So yes, there continues to be encouraging signs. But those worrisome histories that today characterize our "neighbors", well, they concern me. I do not feel immune from the same assault.

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