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