Survey: FDA Proposed Regulation of Lyme Tests

General or non-medical topics with information and discussion related to Lyme disease and other tick-borne diseases.
Henry
Posts: 1108
Joined: Thu 10 Nov 2011 18:49

Re: Survey: FDA Proposed Regulation of Lyme Tests

Post by Henry » Wed 12 Nov 2014 20:57

Phyfe: Your comments reflect your own bias and ignorance. ALL of the grants listed are for research on LYME DISEASE. None of them relate to pattern baldness. If you take the time to at least read the title -- and perhaps the summaries that also are attached if you can understand them-- you will see that some of them relate to research on virulence factors, biomarkers of infection and disease, diagnosis and other issues mentioned by those who post often on this website. Yes, many of the issues under investigation might be considered to be important to someone with Lyme disease -- or someone who is really trying to understand Lyme disease.

Duncan: What does any of this have to do with royalties and other phantoms that you've raised. Once again, when you don't have a satisfactory answer or a response you resort to unrelated distracting issues...... Such nonsense and drivel. You really don't know what you are talking about. However, I guess you get enough encouragement from your uninformed audience to make it seem worthwhile to you. Or, do you really need such a fix to make you feel that you are accomplishing something worthwhile?
Last edited by Henry on Wed 12 Nov 2014 21:04, edited 1 time in total.

phyfe
Posts: 167
Joined: Sat 15 Sep 2012 19:28

Re: Survey: FDA Proposed Regulation of Lyme Tests

Post by phyfe » Wed 12 Nov 2014 21:01

Henry wrote:Phyfe: Your comments reflect your own bias and ignorance. ALL of the grants listed are for research on LYME DISEASE. None of them relate to pattern baldness. If you take the time to at least read the title -- and perhaps the summaries that also are attached if you can understand them-- you will see that some of them relate to research on virulence factors, biomarkers of infection and disease, diagnosis and other issues mentioned by those who post often on this website. Yes, many of the issues under investigation might be considered to be important to someone with Lyme disease -- or someone who is really trying to understand Lyme disease.
Oh henry you totally missed the point I was trying to make (obtuse to the max) and I won't bother with trying to straighten you out. Read it again...maybe this time it will sink into your oh so thick head.

Henry
Posts: 1108
Joined: Thu 10 Nov 2011 18:49

Re: Survey: FDA Proposed Regulation of Lyme Tests

Post by Henry » Wed 12 Nov 2014 21:08

Phyfe: Hard to match wits with a defenseless opponent, especially one who can't even remember what they said a few minutes ago. Bye now....

duncan
Posts: 1370
Joined: Wed 5 Sep 2012 18:48

Re: Survey: FDA Proposed Regulation of Lyme Tests

Post by duncan » Wed 12 Nov 2014 21:10

Henry, you mental stud, you make it all worthwhile. :D

Now, I know what I'm talking about. I speak from experience. I know where theory intersects reality and what the crash site looks like. Do you? Do you, Henry? You are all talk, and no substance.. You are the sound and the fury. You are posture without meaning.

Do NOT waste my time anymore, Hank.

phyfe
Posts: 167
Joined: Sat 15 Sep 2012 19:28

Re: Survey: FDA Proposed Regulation of Lyme Tests

Post by phyfe » Wed 12 Nov 2014 21:14

Henry wrote:Phyfe: Hard to match wits with a defenseless opponent, especially one who can't even remember what they said a few minutes ago. Bye now....
Henry, was I really so vague it was impossible for your limited mind to determine what I said? So sad! Bye...

velvetmagnetta
Posts: 469
Joined: Sun 23 Feb 2014 22:47

Re: Survey: FDA Proposed Regulation of Lyme Tests

Post by velvetmagnetta » Thu 13 Nov 2014 0:31

ChronicLyme19 wrote:
velvetmagnetta wrote:I don't believe Lyme persists.
I have to respectfully disagree. I strongly believe there are those of us in which it continues to persist despite antibiotic treatment. It may not be the case for you, and it may not be the case for 90% plus of people who get Lyme, but there is a small subset of people in which we can't kick the infection and antibiotics still help. There are a myriad of reasons why Lyme could persist:

Antibiotic resistant strain (just like MRSA, there could be antibiotic resistant strains)
Biofilms
Persister cells
Genetic susceptibility (MTHFR for example)
Immune Deficiencies
Coinfections
Sub-optimal abx absorption
Lyme's suppression and modulation of the immune system
And a myriad of underlying other conditions

I highly encourage people to find the GRAY, and stop thinking in black and white. Black and white thinking doesn't do us any good. Why does everyone have to fall under the same group? Why can't we have groups of people that have different stories and different responses to treatment: a group of people who clear the infection easily with abx (like the ones my LLMD talked about who have strong IgG response), a group of people like yourself that have finally beaten the infection but have lasting nerve damage, a group of people like me in which antibiotics still make a difference (perhaps this group has some problem with IgGs), and group x, y and z in which they have some other possibility.
velvetmagnetta wrote: I believe antibiotics are very good and quick about killing it off and I want to move on from this persistence rut and find out what on God's Green Earth is really wrong with all of us!
If abx kill off all lyme so easily, why did John's Hopkins go an do a study on abx to try to kill off persisters? Did they just not dose the bacteria with enough abx in the first place? It would seem unlikely that such an institution would put such an easy flaw in their study. I would expect that they would have tried very hard to kill the lyme with abx before doing a study on persisters.

TLDR; we need to have a test with 100% sensitivity to end this debate once and for all. There are gray areas in which Lyme persists.
ChronicLyme19 - When I called the persistence argument absurd, I didn't mean that the idea that people think they may still be infected with the Lyme bacteria after treatment was absurd, I meant that the argument, itself, is absurd only because every time researchers do not find any live, active spirochetes in an experiment, people who believe Lyme persists will always say that the researchers just haven't looked hard enough, or they didn't look in the right places.

There can never be an end to this argument!

Except, of course, with an incredibly sensitive and accurate Lyme test - like a culture test or those Lyme nanotubes that were proposed a while back: http://physicsworld.com/cws/article/new ... me-disease. I do believe people would be satisfied with whatever these two type of tests find.

This issue is particularly frustrating to me because, right off, I was told that Lyme was very difficult to kill and that I needed years of antibiotics. Maybe I was lucky to be able to see first-hand that more and longer courses of antibiotics do not help. Or maybe, since doxycycline was shown to be ineffective against Lyme persister cells, I was just not on the right mix of antibiotics for all those years.

But I suspect this is not the case.

Dr. Kim Lewis was certain he would find Lyme persisters before he even did any experiments - I saw an interview on his website where he was talking about it before his tests - and he was sure of it. That's because almost every kind of bacteria out there has persisters! Most, if not all, bacteria leave dormant or low-activity cells behind after an antibiotic assault as a survival skill - so they don't become completely extinct. Bacteria have been around a hell-of-a-lot longer than human beings, so they have a few survival tricks up their sleeves.

But now, because such a prestigious scientist has found them, all research will be centered on this persistence idea - and it will be years by the time we realize that a few left-over persisters are not what's keeping us all so ill.

Of course, this is just my opinion. But it's an opinion I've formed over many years and after reading a fair amount of research. I do realize there is a large body of research about bio-films and different forms of Lyme, but I have not found those studies to be well-designed and so, therefore, I don't trust the results.

It does make the most sense, though - If you're still ill after treatment, you must still be infected! What could be more logical? But biology doesn't always follow human logic. Oftentimes, we find the reason behind the effect of a disease is not obvious.

I love your open-mind and willingness to not take the easy way out, ChronicLyme19. And maybe it is not all black-and-white because there are so many manifestations of disease associated with Lyme, but then again - with a little more experimentation in the right places, maybe we will find it is black-and-white.

velvetmagnetta
Posts: 469
Joined: Sun 23 Feb 2014 22:47

Re: Survey: FDA Proposed Regulation of Lyme Tests

Post by velvetmagnetta » Thu 13 Nov 2014 1:41

Duncan and Phyfe - Duncan has such a verity and poignancy about his writing that I was struck to see an out-right insult. In one sentence, he can wipe the floor with with most people, and I thought the comment beneath him.

I realize this argument has been going on long before I ever posted on this site, and, by nnecker's own admission, he's no angel. I think a little provocation is good, but only if it inspires us to reach a little higher than one another, not the other way.

duncan
Posts: 1370
Joined: Wed 5 Sep 2012 18:48

Re: Survey: FDA Proposed Regulation of Lyme Tests

Post by duncan » Thu 13 Nov 2014 1:48

Hey, VM, it was small of me. I can be small with the best of them.

You keep writing about your truths, because I think they are compelling and intelligent. You certainly make me think.

velvetmagnetta
Posts: 469
Joined: Sun 23 Feb 2014 22:47

Re: Survey: FDA Proposed Regulation of Lyme Tests

Post by velvetmagnetta » Thu 13 Nov 2014 2:08

Henry - As much as I loathe to say it, thank you for the link to the list of 2013 Categorical Spending on Lyme disease. I didn't realize there was such a diversity of experimental approaches going on. Total boorish rudeness aside, Henry said:
Although the figures for 2014 are not yet available, here's what was funded in 20013:

http://report.nih.gov/categorical_spend ... %20Disease
(Although we probably won't be seeing any results until the year 20013, I believe Henry meant 2013)

There's everything from intracellular immune privileged sites http://projectreporter.nih.gov/project_ ... I095935-02

to Steere's autoimmune theory for PTLDS (arthritic-type) http://projectreporter.nih.gov/project_ ... 01175-01A1

to genetic differences in immune reaction behavior http://projectreporter.nih.gov/project_ ... 99094-01A1

to Bb motility and chemotaxis http://projectreporter.nih.gov/project_ ... R060834-03!

And many of them mention "chronic Lyme", persistence, PTLDS, and antibiotic-refractive Lyme arthritis.

Please let us know when the 2014 grant awards are out.

velvetmagnetta
Posts: 469
Joined: Sun 23 Feb 2014 22:47

Re: Survey: FDA Proposed Regulation of Lyme Tests

Post by velvetmagnetta » Thu 13 Nov 2014 2:48

Duncan - 8-) Consider me encouraged!

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