Why the Government is Suppressing the Lyme Disease Epidemic

Medical topics with questions, information and discussion related to Lyme disease and other tick-borne diseases.
velvetmagnetta
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Re: Why the Government is Suppressing the Lyme Disease Epide

Post by velvetmagnetta » Fri 9 Jan 2015 15:38

A while back in a thread critiquing the Sapi culture test, it was found that Wormser estimated that
The recovery rate per plasma culture and the frequency of positive results for plasma cultures for individual patients were consistent with a level of spirochetemia of ∼0.1 cultivable cell/mL of whole blood.
this quote is from this thread, where Henry left me hanging, yet again:

http://www.lymeneteurope.org/forum/view ... 9&start=80

OK, so there are very few actual spirochetes floating around in the plasma of 2-Tier tested EM rash confirmed Lyme patients' blood.

I really hate to bring this up again, but if growing Borrelia spirochetes in BSK media is so do-able, then why not use this technique as one criteria to recruit late-stage Lyme patients? It looks like if you analyze enough blood from a patient, you are bound to find a spirochete or two. The growth strategy can always be improved upon using what we've learned from Dr. Eva Sapi's work.

If live sprochetes are found to grow from the blood samples, then you can be sure there is still an active infection. PCR can then be used to further analyze what was found.

If no live spirochetes can be grown from a suspected late-stage Lyme case, then, according to Dr. Linda Bockenstedt, many pieces of immune-reactive Lyme debris will be left-over, so a researcher can scrape the appropriate tissue or cartilage for a sample to be analyzed by PCR to see if the patient ever had Lyme in the first place. Even though this technique cannot tell you if the infection is active or not, it can still be used to at least confirm that the patient still suffering debilitating fatigue and pain did, in fact, have Lyme disease at some point.

duncan
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Re: Why the Government is Suppressing the Lyme Disease Epide

Post by duncan » Fri 9 Jan 2015 15:49

Well, Henry, no one can say you're not doing your part to help perpetuate a myth. ;)

Let me ask you something. If I have an EM, and get diagnosed with Lyme, and receive a month or so of doxy, and my symptoms disappear for a short while then reappear, or my symptoms really never go all away...and then I am tested for Lyme four months later, or six months later - and I am IgM positive, i.e., two of three bands positive - do I have Lyme? Let's assume I was not bitten by another tick in the interim. Do I have Lyme? If not, why not?

Or, if I remain symptomatic for Lyme, and never had an EM, but once tested positive at seven IgG bands..and currently two years later after treatment have three bands IgG positive (none of which is band 41), and am still symptomatic - do I have Lyme? If not, why not?

I can go on and on, agreed? You understand how many potential permutations we are discussing?

These are ALL diagnostics, each and every one. I am not, nor have I ever, suggesting that diagnostics are not preferred. I believe most clinicians, including IDSA and ILADS, prefer diagnostics whenever possible.

I have answered your questions about enrollment criteria. Even then I specified that I would opt for some sort of diagnostics. Why you prefer to ignore what is in black in white is beyond me. I cannot speak to your motives.

Henry
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Re: Why the Government is Suppressing the Lyme Disease Epide

Post by Henry » Fri 9 Jan 2015 16:06

Duncan: But you never mentioned any of the symptoms that you feel are of diagnostically significant with respect to Lyme disease. That's what I have asked you to do repeatedly. Based on your symptoms, why do you think that you have Lyme disease -- and not some other medical condition with similar symptoms?

With respect to the EM rash, who made the interpretation? Was it you or a physician with requisite expertise in that regard? EM rashes have been known to be misdiagnosed. Also, the results of IgM Western blots are not considered reliable after 1-2 month of infection. The presence of 5 out of 10 possible bands is required for a positive IgG Western blot. So, the Western blot data does not support a diagnosis of Lyme disease.

If you didn't have Lyme disease in the first place, but have been and continue to be treated for Lyme disease, why would you expect to see improvement in your symptoms? Don't you think it's about time to consider other possibilities?
Last edited by Henry on Fri 9 Jan 2015 16:18, edited 2 times in total.

duncan
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Re: Why the Government is Suppressing the Lyme Disease Epide

Post by duncan » Fri 9 Jan 2015 16:15

Symptoms? Oh, that's what you want? Symptoms??

We all of us - each and every one - have grotesquely swollen knees and this weird EM rash that never, ever goes away and is in plain sight for everyone to see, always.

Now, I am done with this topic and moving on.

Henry
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Re: Why the Government is Suppressing the Lyme Disease Epide

Post by Henry » Fri 9 Jan 2015 16:27

Duncan: I've never heard of an EM rash that never goes away, even after appropriate antibiotic therapy. However, this presents a splendid opportunity for you to get an answer -- once and for all-- since Borrelia can be isolated and cultured from the leading edge of an EM rash, a high percentage of the time. You don't really need to use the yet-to-be-validated Sapi culture medium to do that since plain old fashioned BSK medium will suffice and has been used for that purpose -- with great success-- for years. Give it a try and tell me what happens. If the results are negative, you really ought to consider other possibilities other than Lyme disease -- if you want to get better.

Incidentally, not everyone that has chronic or late stage Lyme disease has grossly swollen knees. Have you consulted an orthopedist about your knees? Maybe you have rheumatoid or osteoarthritis? A good orthopedist should be able to tell.

Lorima
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Re: Why the Government is Suppressing the Lyme Disease Epide

Post by Lorima » Fri 9 Jan 2015 18:01

Henry wrote:
Lorima: In view of your extensive and intimate experience in dealing with patients with Lyme disease and your distrust of 2T testing, what would be your enrollment criteria for a clinical study on the benefit of a specific treatment regimen for early, disseminated, late Lyme disease, or chronic Lyme disease ? Please guide us through that process. And, please be as specific as possible in defining the patient cohort.

Duncan: You may help Lorima out and join in if you wish.


Duncan wrote:
My Lord! Henry, this is about as zany a response as I've seen in quite sometime.

So, if I watch a plane crash, and the same model plane crashes 25% of the time, and if some of its victims are family members of mine, and I say there is something terribly, dangerously wrong with that plane model - your response to that is: Well, if you don't like it, build one of your own?


:) Yes, that's about the size of it.

It's absurd to expect Duncan and me to produce a specific clinical trial enrollment protocol in two days - or even two months.

A lot of preparation would go into it, including having discussions with clinicians who see a lot of late LD patients along with their complete Western blot and other test results, and discussion with a lot of their late LD patients who have lab documentation. Then I'd want to talk to some smart non-LD-involved neurologists and psychiatrists, in both high and low endemic areas, to see what signs and symptoms they see, in patients with illnesses that are puzzling and have required resort to "diagnoses of exclusion" or a psychiatric interpretation of "medically unexplained symptoms." I suspect it would not be too difficult to generate a list of some stand-out, fairly unusual signs and symptoms worth including.

The literature on diseases which have neurological signs and symptoms is vast, but it would have to be surveyed by unbiased and insightful readers, to look for clues, and to be aware of all current diagnostic categories that overlap with LD, and to evaluate which ones seem well-grounded in physical reality, and which ones are make-do descriptions cobbled together so neurologists can say something, anything, to their patients with conditions that are currently not understood. There are plenty of idiopathic (cause not known) conditions, in medicine, and there are a lot of story-telling papers with graphs and tables published, that look science-y and evidence-y, but are just provisional categorizing and explanation, used for lack of anything better. I'm not necessarily deploring this; doctors really do have to have something to tell their patients, and names for certain collections of symptoms so they can discuss them with each other. I'm just pointing out that in these cases, there are any number of stories that could be told to serve the purpose, and it takes detailed and critical reading to sort out the relative proportion of spurious, or should I say provisional, assertion in each disease field, which is there for social rather than scientific reasons.

The symptoms and signs on any generated list for signs and symptoms that occur in late LD wouldn't each be specific to LD. It would have to be one of those lists on which the prospective research subjects accumulate points, that are useful for diseases that don't happen to have one convenient, completely specific marker. This includes a lot of diseases and conditions - which fact speaks to our relative paucity of tools, not to anything that should lead one to question the existence of these conditions. That error is akin to the one called WYSIATI by Danial Kahneman (Nobelist author of Thinking, Fast and Slow): What You See Is All There Is. But it's worse; the medical version would be What You Can Measure Is All There Is.

I suspect that uncertainty in diagnosis, may apply to a significant proportion of patients with illnesses in the internal medicine field (as opposed to surgery for trauma, say). Anyone over, say, 40, who doesn't know people (not with LD) who have been misdiagnosed for some set of symptoms because of this fact, is not paying attention. The idea that patients typically present like a contrived true-false, or multiple choice quiz, where there is one right answer and all the others are detectably wrong, is a fantasy. There is a lot of guesswork in medicine. I always chuckle when somebody complains about a doctor using "unproven" therapies, now that I know how iffy the whole process of diagnosis and treatment typically is. It's true that some are proven, and some are more plausible than others. But expecting certainty as the norm, is absurd.

Off the top of my head (which is not how I'd design a clinical trial, or any experiment, despite Henry's quixotic request) bradycardia (slow heart beat) attributable to heart block comes to mind; I personally know three officially diagnosed LD patients who had that. Here's the WebMD link to that:
http://www.webmd.com/a-to-z-guides/hear ... c-overview

It occurs to me that you might want to exclude people over, say, sixty-five from the study, just because of the rise of age-related symptoms. This is unfortunate, because people of retirement age are in a high-risk group due to having more free time to be outside. I'd have to consider the pros and cons of this, carefully.

Multiple peripheral dysesthesias, or radicular neuropathies, with no other discernable cause, also comes to mind, as promising items to list. It might be a good idea to not count "LD suspicion points" for those types of back pain that are so common as to be confounding, like lower back pain, or sciatica, though some of these cases are likely due to LD. Patients with these manifestation would have to have some other, less common, signs and symptoms in addition to the lower back pain or sciatica, in order to be included.

Because late LD is so heterogeneous in expression, the list would have to be pretty long. And you couldn't take the attitude that "subjective" symptoms like numbness, tingling, and pain have to be ignored, because some proportion of patients might be lying or deluded. Our available objective imaging capacities for neurological dysfunction are mostly nonspecific and insensitive, so there is no avoiding listening to the patients about their bodily sensations. Anyone with a degree of mistrust that doesn't allow that, should go into a different field than medicine - maybe mechanical engineering, or accounting.

To me, the political block to doing any realistic LD research (due to the successful spreading of the illusion that LD diagnosis and treatment presents no problem) is far more urgent that designing trials that can never be funded, and that wouldn't be believed even if they were accomplished. As a scientist, I've done original work and made some discoveries, some of which were surprising. But there wasn't a team of people devoted to stopping progress in my field, in order to defend the status quo, as there is in the LD field. In my field, people understood that progress and correction of errors was desirable.

We shouldn't cultivate the illusion that doctors can do clinical trials without the cooperation of multiple agencies and institutions. You can (in fact, Henry, hv808ct, and their team do) block good clinical research, using institutional barriers.

[
Henry wrote:Duncan: Use what ever criteria YOU deem appropriate to identify patients YOU believe to be eligible for enrollment in the study. I'm asking YOU to identify the patients. WHO has early acute, disseminated, late stage or chronic Lyme disease by the criteria YOU and LORIMA believe is appropriate? You should be able to do this. Who are these patients you and Lorima have been talking about? Who are the ones both of you are trying to help and provide care for?

I take it since you think all currently used diagnostic tests are worthless, you are left only with symptoms. OK, what symptoms are you going to use for enrollment criteria?
Your memory is playing tricks on you again. I never said all serology is worthless, just the arbitrary criteria used to interpret them. How many times do I have to say that, before you get it? Furthermore, in this case, I specifically suggested a possible criterion to use:

Lorima wrote:
These low-IgG patients often have enough, and varied-enough, IgM antibodies specific to Bb, to be identified and diagnosed accurately as having LD. Not by the current arbitrary rules, mind you, but by criteria that are nonetheless ( I would even say more) scientifically acceptable. The argument that IgM is too "sticky" to be used reliably for diagnosis, is an excuse for shoddy technique, in my view. A research lab, if not a commercial lab, would be able to overcome this problem, if it really is a problem.


Henry, I think this recurring memory problem, which may or may not be caused by your desire to maintain your belief system, is interfering with your ability to participate in a meaningful discussion. Demanding that others be specific (which implies that you think they aren't) and then forgetting or ignoring what people have specifically said in your responses to them, is a waste of time (which may be your actual goal here, I realize - when we're writing to you, we're not writing to the media, etc.) The fact that it is all written down here, and that you could re-read it whenever you forget, makes it all the worse. It's not as if it were an unrecorded verbal conversation and no one took notes.

It reflects badly on you and your team. If you are all this careless and/or confused, no wonder the field is such a mess. It's like a political machine in which only people with certain mental and emotional disabilities are invited to participate.

Then Duncan wrote:
Personally, I would enroll individuals who have a history of an EM, and/or are IgM positive or have two or three bands IgG positive, and are symptomatic, despite treatment. I would base enrollment on that - that doesn't mean others who don't satisfy those criteria don't have active Lyme. I think there is an argument that if someone has even one band positive that is specific to Bb, and are symptomatic, they should be considered for inclusion.


So, we both have suggested specific criteria. These are open to discussion, as you can tell from our tone.

I wrote my original post in this thread because of the suggestion that new trials on late LD patients be done, using the old 5-band IgG western blot as an entry requirement. I think that is unrealistic scientifically, though impossible to avoid at present, politically. In other words, there is a political block to studying late LD except Steere's type of arthritis, and so it's silly to simply call for "more science," until that block is removed.
"I have to understand the world, you see."
Richard Feynman

Henry
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Re: Why the Government is Suppressing the Lyme Disease Epide

Post by Henry » Fri 9 Jan 2015 19:05

Lorima: Excuses, excuses...........I'll ask you the same rather straightforward question that I asked Duncan. Excluding the results of 2T tests that you distrust, how would you determine that a patient has Lyme disease ? It's a simple question that I am asking YOU. Surely you must have an opinion on such a basic issue? You seems to have opinions on practically everything else. Share your wisdom with us, please, based on your experiences with others you believe to have Lyme disease. Forget the politics. What I am asking you to do has nothing to do with politics.
Last edited by Henry on Fri 9 Jan 2015 19:07, edited 1 time in total.

Lorima
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Re: Why the Government is Suppressing the Lyme Disease Epide

Post by Lorima » Fri 9 Jan 2015 19:07

Henry, did you even read my post? It seems as if you didn't.
"I have to understand the world, you see."
Richard Feynman

Henry
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Re: Why the Government is Suppressing the Lyme Disease Epide

Post by Henry » Fri 9 Jan 2015 19:45

Lorima: Yes, but I must say that it is very distracting because it rambles all over the place, rather than focuses on an answer to the simple question that I posed.

When you say that the criteria used to interpret the results of some of the diagnostic tests used are arbitrary, that is not correct. For example, the number and type of bands used to develop the criteria used for interpreting the results of Western blots were based on the frequency at which certain bands appear when hundreds of specimens from well-characterized patients were examined. The criteria are hardly arbitrary as you falsely state. They are based on statistical considerations and frequency analysis.

Everyone knows that the binding between antigen and antibody is based on chemical charges, and that a positive antibody-based test is based on the strength of the reaction (binding) between antigen and antibody. IgM antibody is pentavalent, whereas IgG antibody is bivalent. Thus, it has 3 more binding sites than IgG antibody; that makes it more reactive than IgG antibody. However, this does not mean that it is only 3 times more reactive than IgG antibody; it is 1,000 times more reactive since, in the mathematical equation for the disassociation constant for antibody binding, valency is an exponential function. So, for some to say that the ability of IgM antibodies to pick up minor and irrelevant cross reaction is because they are "sticky" is a short-hand oversimplification of the fact that their increased binding strength enables this to happen.

The cross-reactivity of IgM antibody increases with time after infection, as the immune response "matures". Also, as you can imagine, more antibodies directed against minor irrelevant cross -reacting antigens appear with time after infection. So, as I hope you see, there are very real and practical reasons for relying on tests involving IgG antibodies late after infection. This is not an arbitrary decision by any means. The presence of cross-reactive irrelevant IgM antibody is a problem with the diagnosis of other infectious diseases as well, not just Lyme disease.

So, please stick to the point and respond to my simple question. I must admit that I started by asking Duncan to developed enrollment criteria for as clinical trial, but soon realized that may have been asking too much of him -- or you for that matter. So, I re-phrased my request. I should think that for someone like you who interacts with patients extensively, you ought to be able to provide some useful insights. No more politics, please.
Last edited by Henry on Fri 9 Jan 2015 19:54, edited 1 time in total.

duncan
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Re: Why the Government is Suppressing the Lyme Disease Epide

Post by duncan » Fri 9 Jan 2015 19:54

Henry, you note that the number and types of bands used were based on the frequency at which those certain bands appear. At what frequency did bands 31(OspA)and 34(OspB) appear?
Last edited by duncan on Fri 9 Jan 2015 19:59, edited 1 time in total.

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