Why is the CDC Trying to Block an Accurate Lyme Disease Test

Medical topics with questions, information and discussion related to Lyme disease and other tick-borne diseases.
velvetmagnetta
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Re: Why is the CDC Trying to Block an Accurate Lyme Disease

Post by velvetmagnetta » Fri 21 Nov 2014 18:50

The "proof" of active infection in treated patients is the similarity between symptoms before and after treatment.

If my spine hurt, I had migraine-like headaches, extreme fatigue, and migrating pain so bad I was disabled before treatment; then now, after treatment, my spine hurts, I have migraine-like headaches, extreme fatigue, and migrating pain so bad I still am disabled; it is not a stretch to assume the symptoms are from the same disease. It is also not reaching too far to think that, perhaps, my infection is still actively infecting me.

Because patient symptoms before and after treatment are the same and at the same severity for late-stage Lyme patients, it is incumbent upon the researchers to investigate this phenomenon and disprove the infection is still alive.

Lyme researchers are the ones responsible for finding incontrovertible proof that the infection is dead under the late-stage circumstances just mentioned.

A culture method that has already been invented must be encouraged - not discouraged as Dr. Johnson has done whether purposefully or inadvertently by publishing a rather scathing criticism of Dr. Sapi for a common (alleged) lab error. Scaring scientists away from either validating the Sapi culture or creating their own doesn't help us get any closer to this most central issue:

Are our ongoing symptoms from an active infection?

If so, why aren't antibiotics killing it? Which ones will?

If not, what is causing our decidedly non-trivial symptoms that are exactly like the symptoms we had while we were infected?

duncan
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Re: Why is the CDC Trying to Block an Accurate Lyme Disease

Post by duncan » Fri 21 Nov 2014 19:00

Henry: "If all this was as clear to others as it is to you, there would be no controversy..."
Agreed. And here's a bulletin for you: It's pretty crystal clear to lots of folks.

Henry: "No doubt much of the work you have been referring to has been discredited or disproved..."
By whom, Henry? It's a fairly small circle of friends in that fraternity. I bet you could name names just like that.

Henry: "You live in a fantasy world."
Yes, you've said that several times. But if it helps you in some small way, you are welcome to repeat it still again.

Henry: "Don't get sick on me again..."
Because,apparently, that's also not one of your strengths?

Henry
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Re: Why is the CDC Trying to Block an Accurate Lyme Disease

Post by Henry » Fri 21 Nov 2014 19:07

Velvetmagnetta:

"Because patient symptoms before and after treatment are the same and at the same severity for late-stage Lyme patients, it is incumbent upon the researchers to investigate this phenomenon and disprove the infection is still alive."

A far more reasonable interpretation of why a particular treatment regimen did not work is that there was no infection in the first place. Under such circumstances, any treatment regimen designed to cure an infection would not be expected to work. Why would you expect it to work?

I've think I've already aid quite enough about Sapi's work.

duncan
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Re: Why is the CDC Trying to Block an Accurate Lyme Disease

Post by duncan » Fri 21 Nov 2014 19:15

"A far more reasonable interpretation of why a particular treatment regimen did not work is that there was no infection in the first place." Not to the patients, Henry.

Not to all the thousands of patients with positive antibody tests.

And not to many of those with negative antibody tests since the reliability of many of those tests has long been questionable.

So, not to the patients, Henry. Patients, Henry. Try to remember: Clinicians and researchers are supposed to be trying to help PATIENTS.

To that end, new research would be a good thing to help develop better diagnostics, and better treatment, for all stages of Lyme, and for post conventional therapy as well.

Henry, at times you remind me of a mechanic who when presented with a car whose engine will not turn over, proclaims, "There is nothing wrong with your car; I've just inflated all your tires, and it rolls down hill just fine."

velvetmagnetta
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Re: Why is the CDC Trying to Block an Accurate Lyme Disease

Post by velvetmagnetta » Fri 21 Nov 2014 19:38

Henry, please reread my last post with the qualifier, "and were positive for Lyme by ELISA/WB". We are talking about patients who did get Lyme disease at some point, then had treatment for it, but were still ill (with the same symptoms) after that treatment.

As has been stated in many papers by Dr. Allen Steere and others, almost half the patients who were positive for Lyme and then treated for it, were still significantly ill - especially the late-stagers, it seems.

We'll leave out the poor saps whose WBs come back equivocal or negative for now.

Now, armed with all the information, please tell me how it is not the responsibility of Lyme doctors, researchers, and the CDC to do and encouraged others to do everything possible to find out for certain whether the infection persists.

Because, frankly, I'm sick to death of this discussion. We need to know if we are still infected or not in order to proceed. If we are all feeling this bad after treatment (with positive Lyme tests) and do not have any co-morbidities and it turns out that, indeed, the infecting bacteria is dead and gone, then we really really need to find out what has gone wrong! And how to fix it! Too many of us are of professional age with higher education under our belts stuck in bed in terrible terrible pain!

duncan
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Re: Why is the CDC Trying to Block an Accurate Lyme Disease

Post by duncan » Fri 21 Nov 2014 22:51

Henry, earlier you stated, "However, individuals may be seropositive for long periods of time after treatment in the absence of active infection; here, further antibiotic treatment would be of no value and the results of serological testing are unclear. The C6 ELISA assay apparently distinguishes between these two situations." Please cite a source for your claim in the second sentence, i.e., the C6 assay can distinguish etc.

Henry
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Re: Why is the CDC Trying to Block an Accurate Lyme Disease

Post by Henry » Sat 22 Nov 2014 0:57

It's a paper co-authored by Adriana Marques with Mario Philipp in which they tested the sera of patients with PTLDS using the C6 ELISA. Although these patients were seropositve by two-tier testing, they were negative -- or had very low titers-- by C6 ELISA. Keep in mind that seropositivity in this case may indicate past exposure, not active infection. That makes sense if the C6 ELISA is likely to be more useful and informative when used during early active infection. However, formal proof for that possibility is lacking. Here' s where one really could use a quantitative ELISA.
http://www.ncbi.nlm.nih.gov/pubmed/15243815

This reference describes a related study re: the C6 ELISA and early infection:

http://www.ncbi.nlm.nih.gov/pubmed/16148173

duncan
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Re: Why is the CDC Trying to Block an Accurate Lyme Disease

Post by duncan » Sat 22 Nov 2014 1:34

Henry, thank you for going out of your way to hunt down those two abstracts, and posting links to them. I feel badly pointing out they fail to support your claim. In fact, in the first of the studies you noted, Marques and company concluded by writing, "In conclusion, the longitudinal change in C6 antibody titer in PTLDS patients does not correlate with clinical outcome or response to therapy. C6 antibody persisted in patients albeit at a markedly lower prevalence and titer than in untreated patients with disseminated Lyme disease. Its presence alone should not be viewed as evidence of active infection." AND "The results indicate that the C6 antibody cannot be used to assess treatment outcome or the presence of active infection in this population."

That suggests it should not be used with any confidence in distinguishing between conditions as you proposed.

Besides, as I mentioned, I am 2T positive, have received treatment, and my C6 values are between five and six times normal, and in recent months have actually risen despite treatment off and on for the past ten years. Anecdote? Yes. But no less relevant.
Last edited by duncan on Sat 22 Nov 2014 13:19, edited 2 times in total.

duncan
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Re: Why is the CDC Trying to Block an Accurate Lyme Disease

Post by duncan » Sat 22 Nov 2014 13:14

I should have pointed this out last night. If one were to take the C6 at face value, and embrace its continued elevated levels despite treatment, one way to interpret these results is that the C6 is at least sometimes performing as hoped, and that in fact it is demonstrating a response to persistent infection. I've spoken to Immunetics, and was told if presented with my C6 values without knowing my history, they would interpret my results as active infection.

It has been my experience that at govt levels, however, it seems more about proving Bb ISN'T around post treatment, rather than accepting what the results of tests may be clearly saying...Which brings us right back to the subject of this thread. Indeed, it almost seems to me in this Marques study that their logic in saying the PTLDS study demonstrates the C6 cannot be used in this population involves a similarly unusual reasoning. They seem to assume that the population should respond to treatment with a four-fold decrease - if not simply return to normal levels - and the c6 value (and associated SF-36 scores post-treatment) correlate with its function AS IT DID IN ACUTE CASES. When it does not, they suggest the test does not really work for PTLDS patients. It doesn't seem to occur to them that the C6 IS working, just not as it did in acute cases - because, well, these are not acute cases! (She also states outright that antibiotic treatments are not helpful for PTLDS patients, and that is simply incorrect for many PTLDS cases, myself included).

It is a curious phenomenon to watch what organizations like the NIH and CDC seem to be doing to the Late Stage Lyme population. Time and time again - including in the above study Henry provided a link to - IDSA proponents write to the fact that when Lyme progresses to Late Stage, it presents with a more intractable form of the disease. A form of the disease that frequently does not respond to conventional therapy conventionally, if at all. And IDSA proponents admit this! Have demonstrated this time and time again. Yet what appears to me to be happening is that fact, that acknowledgement, is being forgotten, if not sometimes outright ignored. The very population that proves refractory to treatment more often than any other, is, once presented with standard treatment, miraculously converted to PTLDS, and all its well-documented resistance - subscribed to by the IDSA! - falls by the way side as if that fact had never been established and widely embraced.

If anybody is wondering where all the Late Stage Lyme sufferers have gone to, just head over to the largest tent in the circus. You can't miss it; It's got PTLDS emblazoned above its entrance.

Anyway, sometimes it appears to me that even when presented with a test that MAY have some utility in Late Stage cases, mainstream Lyme manages to find a flaw that either diminishes or limits its utility, or simply excludes it.
Last edited by duncan on Sat 22 Nov 2014 14:21, edited 1 time in total.

Henry
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Re: Why is the CDC Trying to Block an Accurate Lyme Disease

Post by Henry » Sat 22 Nov 2014 14:21

Duncan: What you fail to understand and what most experienced investigators appreciate is that with two-tier testing and even with the C6 ELISA, low background levels of antibody remain long after the infection has been cured by antibiotics. The value of the C6 ELISA test is that high values are noted early during active infection and their decline with treatment can be used to monitor the progress of antibiotic therapy. However, once values drop to very low or background levels, the C6 ELISA -- as is the case for most other serological tests -- is of little value.

Most investigators would attribute such low background values to past exposure to Borrelial antigens as a result of a previous infection that has been cured. Why do such low values persist for so long after treatment? We don't know for sure. However, Borrelia possess at least 8 different types of adhesins or integrins on their cell surface which permit dead Borrelia cells or their remnants to persist in matrix tissues for long periods of time. These components are still able to generate an antibody response although not nearly of the magnitude generated during an active infection. This explains why such low background values don't decrease in response to antibiotic therapy -- which would happen if there were they were the result of an active infection. These issues also apply in the case of Western blots, that likewise are antibody-based assays.

So, there is no deep dark conspiracy here, Duncan. These are just the facts that one has to deal with. Incidentally, what happens during Lyme disease is not a special case since the same situation applies for antibodies generated in response to the flu virus and other infections. Many of us still have antibodies in our blood against viruses that caused previous cases of the flu; however, because the flu virus changes (mutates) from season to season, such low levels of background antibody -- that certainly don't indicate active infections-- are not protective against the new mutated virus. That is why new flu vaccines must be developed in advance of each flu season.

As I said before, I much prefer numbers derived from quantitative ELISA tests that the blots and dots and spots of Western blots and tests like that. A well constructed quantitative ELISA with positive and negative control standards provides can provide a LOT of information to "tidy up" the situation.

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