Valid Tests Not Main Issue For Me

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Camp Other
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Valid Tests Not Main Issue For Me

Post by Camp Other » Sun 2 Nov 2014 19:20

To quote LHCTom:
LHCTom wrote: Ok - Successful cultures are the reference basis for most existing Lyme tests. On one hand its the reference standard for calculating the sensitivity and specificity by establishing a 100% proven positive but too slow and contamination prone to be useful. Doesn't that mean all culture proven tests must be bogus since contamination is unavoidable. And far too slow to compete with ticks sucking blood under bandages. So its worth going through all the trouble of xenodiagnosis and inventing clever bandages but not trying to advance the culture after more than a decade of stagnation due to bad attitudes and lack of imagination.

If they would get off their butts and do things like help, maybe the empiric treatments wouldn't be necessary. Lets not forget the doctors, researchers, CDC, NIH and FDA have responsibility to resolve what is going on so they are partly responsible for these treatments. If they bothered to get out of their offices and looked out into the real clinical world at real ill patients, maybe they would realize they carry some responsibility. They cannot sit back in their cozy offices collecting their big salaries and patent rights and complain about doctors in the field trying to help and wash their hands of the responsibility while writing JCM editorials.
This.

I'm writing about this here rather than the FDA test validation thread because I'm diverging a fair amount from that topic and going down a side alley. But it's a big important alley.

A valid culture - even if it takes a long time - would be a very useful test to confirm that someone is currently infected and needs treatment. As it is, many people who experience Lyme disease symptoms didn't realize they were infected earlier on and go from doctor to doctor for months if not years to figure out what's wrong with them. If a culture test takes weeks or even a couple months, but gives someone a clear answer as to what's ailing them (at least in part) then for many it would be well worth it.

That said, an astute doctor should be able to look at a patient's symptoms and figure out what is wrong if they do the detective work. The signs of Lyme disease at a later stage should be considered in a differential diagnosis - especially when other conditions have already been ruled out and the remaining data seems to fit.

Before anyone was relying on a culture, patients were still being diagnosed with Lyme disease and treated. And even today, many patients are not getting the culture done because they simply can't afford it, and when asked, will say that they already know they have Lyme disease and they need the money for treatment - why get a test that already confirms what they and their doctor already know? Others, of course, will get the culture in hopes of it being more data to support their diagnosis.

I think personally though that what's more important than the test or textbook diagnostic criteria one has to meet is the treatment, though, and that's where more research money needs to go. We already have patients we strongly suspect of having Lyme disease using their clinical history and existing tests and rule-outs. And these patients have persisting symptoms after initial standard antibiotic treatment. Clearly that trick doesn't work, and what's up anyone else's sleeve?

Repeating LHCTom:
LHCTom wrote: Lets not forget the doctors, researchers, CDC, NIH and FDA have responsibility to resolve what is going on so they are partly responsible for these treatments.
All of those who decided to protest back in October, in my opinion, need to focus on this fact. The parties who need to be petitioned are broad. And specific treatment milestones need to be petitioned for. As it stands, we've been sitting on many years of stalemate and no real forward movement. How is this going to change? Where should everyone's efforts be directed?

duncan
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Re: Valid Tests Not Main Issue For Me

Post by duncan » Sun 2 Nov 2014 19:48

If only because of special interests/concerns, you are unlikely to see meaningful progress on the treatment front until there is incontrovertible proof that infection persists post current treatment regimens, or that immune dysfunction caused by Bb is behind continued symptoms.

Demonstrating conclusively, and repeatedly, either of those two conditions should galvanize the research community into looking at treatments. Should.

But I fear first we will have to show indisputable evidence that infection or immune dysfunction directly relating back to Bb is at play, and is causal to continued symptoms. It is not enough to be symptomatic. It is not enough to be CDC 2-tier compliant. Or have positive PCR. Or be C6 Peptide positive. Or take your pick of any other of the current crop of confirmatory tests. Researchers and clinicians have for years demonstrated disdain or disbelief or indifference at claims of unrelenting symptoms refractory to present treatment regimens. Even being CDC 2-tier compliant post treatment can be shrugged off as being only reflective of an old infection. Same with any other test presently being offered.

Each time, the end game here is denial of treatments. There are too many hurdles to admitting current treatment practices are insufficient. Insurance. Liability concerns. Legacy.

So, until patients have tests that substantiate their claims, I suspect there will not be much progress realized in generating monies for new treatment research.

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ChronicLyme19
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Re: Valid Tests Not Main Issue For Me

Post by ChronicLyme19 » Mon 3 Nov 2014 18:38

That said, an astute doctor should be able to look at a patient's symptoms and figure out what is wrong if they do the detective work. The signs of Lyme disease at a later stage should be considered in a differential diagnosis - especially when other conditions have already been ruled out and the remaining data seems to fit.
Yes, and they do, but they are few and far between because the mainstream medical establishments still hold you can't have an active ongoing infection post initial abx treatment. The docs are too scared to be sued of of practice by insurance companies or lose their licenses because of actions from the state medical boards. Patients can't get treatment because the insurance companies won't cover it and deny it exists, hence we need proof persistent borreliosis exists post 1 round of abx.

I'm sure everyone on here has gone through tens of doctors because they kept saying it must be something else. How many of us have been rejected IV abx because we had no conclusive proof it was lyme?
But I fear first we will have to show indisputable evidence that infection or immune dysfunction directly relating back to Bb is at play, and is causal to continued symptoms. It is not enough to be symptomatic. It is not enough to be CDC 2-tier compliant. Or have positive PCR. Or be C6 Peptide positive. Or take your pick of any other of the current crop of confirmatory tests. Researchers and clinicians have for years demonstrated disdain or disbelief or indifference at claims of unrelenting symptoms refractory to present treatment regimens. Even being CDC 2-tier compliant post treatment can be shrugged off as being only reflective of an old infection. Same with any other test presently being offered.
Exactly Duncan you hit the nail on the head.
Half of what you are taught is incorrect, but which half? What if there's another half missing?

Lorima
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Re: Valid Tests Not Main Issue For Me

Post by Lorima » Thu 13 Nov 2014 16:24

Good points, Duncan and CL19. CO, I'm not quite getting why you still think clinical diagnosis of LD (except with EM) is an option for ordinary physicians, in light of the current mainstream medical dogma. An astute doctor protects his/her reputation, avoids liability, and no doubt believes he/she is serving patients very well, by following guidelines issued by the relevant specialty society. Clinical (non-test-supported) diagnosis of LD in the absence of EM is not just discouraged, it's forbidden by the IDSA guidelines. And I'm not quite getting how one could hope for progress to be made in treatment protocols, when the cause of the symptoms is, at best, acknowledged to be unknown. Meanwhile, both research and editorial articles are repeatedly published in leading journals by the dominant experts in the field, asserting that such symptoms are so rare as to be unworthy of effort, unrelated to LD infection, psychogenic, and/or a social phenomenon caused by an anti-science counter-culture.

Ignoring all this doesn't make it go away, just renders its consequences artificially mysterious.
"I have to understand the world, you see."
Richard Feynman

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