British billionaire's family stricken

General or non-medical topics with information and discussion related to Lyme disease and other tick-borne diseases.
duncan
Posts: 1370
Joined: Wed 5 Sep 2012 18:48

Re: British billionaire's family stricken

Post by duncan » Tue 15 Dec 2015 0:29

97% is not 100%. Almost is not invariably.

Would you agree accuracy is important in any medical or scientific dialogue?

"I'm sure all would agree that it is very important for the media to present accurate and reliable information when it come (sic) to Lyme disease..." Who just wrote that earlier today?
Last edited by duncan on Tue 15 Dec 2015 0:49, edited 1 time in total.

dlf
Posts: 294
Joined: Sun 7 Apr 2013 15:36

Re: British billionaire's family stricken

Post by dlf » Tue 15 Dec 2015 0:47

Welcome back Henry. Last time we heard from you was sometime in January, I believe.

It seems as though you most often post when the ALDF or IDSA wants to float a new argument to the Lyme community. I guess we should feel flattered and honored that you would post this to get our opinions on the 10th draft version.

As to this little spat between you and Duncan, I will remind you that the question of whether Lyme could be seronegative or not was pretty much settled with the publication of the Klempner treatment trials. You do seem quite fond of bringing those treatment trials up when you want to make a point. Remember, a whole arm of that study was devoted to Lyme patients who were seronegative.

Duncan, by the way this article and Henry are only quoting Gary Wormser from the news story on NBC by Pei-Sze Cheng.

http://www.nbcnewyork.com/news/local/Ly ... 76931.html

Henry, who exactly wrote this draft? It appears to be unsigned.

I see a number of other problems with the material that has been included.

Henry
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Joined: Thu 10 Nov 2011 18:49

Re: British billionaire's family stricken

Post by Henry » Tue 15 Dec 2015 16:39

It should be noted that in the Klempner studies, whether patients were seropositive or seronegative refers to their status at the time of enrollment , not at the time they originally were correctly diagnosed for Lyme disease by CDC criteria , 6 months or more before enrollment
( http://www.nejm.org/doi/pdf/10.1056/NEJM200107123450202 ). So, those studies had nothing to do with whether there is such a thing as seronegative Lyme disease per se.

In also should be noted that laboratory test are not always 100% accurate; most have a small experimental error rate associated with them. This becomes apparent when one conducts the same laboratory test against the same specimen several times. One does not get exactly the same identical test result for all replicates examined. Although it is desirable -- and one always strives-- to keep the experimental error rate to a minimum, I would say that an error rate of 3% is pretty darn good. In any event, when the term "invariably" was used, laboratory error and immunodeficiency were noted as qualifiers. Fair enough?

duncan
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Joined: Wed 5 Sep 2012 18:48

Re: British billionaire's family stricken

Post by duncan » Tue 15 Dec 2015 16:52

You seem to be missing the point here, Henry, not to mention the irony.

Accuracy and reliability, and by extension, credibility, are at the core of the many Lyme issues. For instance, look at how late stage/chronic Lyme patients have been characterized by some who seem to support the IDSA Lyme Guidelines. That may fly for a portion of clinicians or researchers who don't know any better. But the patient community knows. That community knows it has been misrepresented. It knows the accuracy and reliability of those accounts can be wrong. It also knows what that may say about the credibility of some making those characterizations.

The same holds true with Borrelia testing. There are enough patients out there - and enough contrary studies - that demonstrate the 2T may have serious flaws.

Accordingly, new diagnostics should be encouraged. Indeed, most recent NIH studies seem to revolve around generating better diagnostics. Wasn't the C6 such an endeavor 15 years ago? What does that say about the 2T accuracy? You should pull up some of those early C6 studies, as in 1999 through 2005. What do you imagine they are comparing the C6 to?

I don't blame the Caudwell family in the least for exploring all their options.

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

Re: British billionaire's family stricken

Post by Henry » Tue 15 Dec 2015 17:24

I will end my participation in this discussion by making this one last point.

Because so many of the diverse symptoms associated with late stage/chronic Lyme disease patients are non-specific and can be ascribed to other non-infectious medical conditions, it is not possible to make a valid diagnosis of Lyme disease in the absence of an objective laboratory test based on symptoms alone. Lyme disease is no different from any other infectious disease. If one has an infection of any long-standing duration (several weeks or more) the immune system -- if that patient is immunocompetent-- is going to make antibodies specific for that infectious agent which, in the case of Lyme disease, will be detected by 2T testing with a reported high degree of accuracy (97-100%). If such a person is seronegative, I find it hard to believe that person really has Lyme disease, despite what they believe or feel. However, I have no doubt that such a person has a medical condition that certainly warrants appropriate treatment and care. Consequently, I believe that it is incumbent upon the part of a physician who has such a patient to explore other possibilities for the cause of their symptoms instead of being obsessed solely with the view that they must have Lyme disease. Otherwise, that patient is being denied the opportunity to receive the proper care they deserve. That is the real tragedy of the girl in the wheel chair. I fail to see how treating someone for Lyme disease -- when they don't have it -- is going to cure their symptoms. Also, the best diagnostic test one could devise or imagine is not going to give a positive diagnosis of Lyme disease in a patient who doesn't have it.
Last edited by Henry on Tue 15 Dec 2015 17:31, edited 1 time in total.

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

Re: British billionaire's family stricken

Post by duncan » Tue 15 Dec 2015 17:30

See? Irony.

The fact that you ignore most of my points is ironic.

If you don't recognize that, would also be ironic. :)

Lorima
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Joined: Mon 29 Oct 2007 20:47

Re: British billionaire's family stricken

Post by Lorima » Wed 16 Dec 2015 16:38

Henry, I realize from your history here, that your status in the LD establishment, and thereby your connection to the world of science and medicine, is entirely based on your willingness to repeatedly recite the IDSA dogma on LD. So there is no point in trying to discuss anything of medical or scientific substance with you. The only value of your comments here, is to see the ALDF's "talking points" in action. This leads me to speculate on what's going on with you and others who become solely devoted to stamping out heresy, instead of investigating the mechanisms of disease states and finding better ways of treating those afflicted.

Clinging to dogma is a serious problem in medical science, not just the LD field. Though I think the case of LD is perhaps one of the easiest to understand, because it has such a relatively short history (under that name) and because the clinical science got frozen at such an early stage. And of course, because the internet made it easy for people outside the field to see the academic papers and realize how the foundational mistakes were made and propagated.

I have touched on this social problem before, and I keep observing modern defenders of the medical faith, and refining my working hypotheses. I'll write down some thoughts on this, and post them in the Lyme community section later, for anyone who might be interested.
"I have to understand the world, you see."
Richard Feynman

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

Re: British billionaire's family stricken

Post by Henry » Wed 16 Dec 2015 17:55

You might examine your critique of my motives to see if it applies to you as well. You refer to "the IDSA dogma on Lyme disease". However, as noted in the piece that I posted, the IDSA guidelines are widely accepted by international and national experts on Lyme disease and have been subjected to additional scrutiny by an expert review panel -- and judged to be scientifically sound. Wouldn't you say that my "talking points" have some value? And just what do you have to offer of any positive value re: medical or scientific substance? Those who whine about a "LD establishment" tend to be people whose views are not general accepted by the experts on LD, i.e., those who do a lot of hard work at the bench and publish their results in peer-reviewed journals. They do their work with their hands, not their mouth. Tell me, If there is no reliable diagnostic test for LD, what do you rely on to determine that someone actually has Lyme disease, and not some other condition with similar symptoms? Is it something akin to a "gut feeling"? Wouldn't you think that before finding better ways to treat those afflicted, one must first determine what they have. I think I asked you this question once before -- if not several times-- and have never received an answer.

dlf
Posts: 294
Joined: Sun 7 Apr 2013 15:36

Re: British billionaire's family stricken

Post by dlf » Thu 17 Dec 2015 1:51

@ Henry,

You may want to go back and re-read Klempner's study parameters for the seronegative arm of the treatment trial:

http://www.nejm.org/doi/pdf/10.1056/NEJM200107123450202
METHODS
Patients
Patients were recruited by means of advertisements and referrals
from physicians. Between July 24, 1997, and November 14,
2000, eligible patients were enrolled in two double-blind, placebo controlled
trials, each conducted at three sites. Patients with a positive
Western blot for IgG antibodies against B. burgdorferi antigens
were enrolled in a study of seropositive patients, and patients who
were seronegative were enrolled in a separate study. Seronegative
patients were required to have documentation of an erythema migrans
skin lesion provided by an experienced physician. We initially
planned to enroll 260 patients in the studies (194 seropositive and
66 seronegative patients). Patients were eligible if they were at least
18 years old, had a history of acute Lyme disease acquired in the
United States, and had at least one of the following: a history of
single or multiple erythema migrans skin lesions, early neurologic
or cardiac symptoms attributed to Lyme disease, radiculoneuropathy,
or Lyme arthritis. Documentation by a physician of previous
treatment of acute Lyme disease with a recommended antibiotic
regimen was also required. At the time of enrollment, all patients
had one or more of the following symptoms that interfered with
their functioning: widespread musculoskeletal pain, cognitive impairment,
radicular pain, paresthesias, or dysesthesias. Profound fatigue
often accompanied one or more of these symptoms. The
chronic symptoms had to have begun within 6 months after the
initial infection with B. burgdorferi and had to have persisted for
at least 6 months but less than 12 years.


As to whether the subject patient of the ALDF article actually might have Lyme disease, a little more research might also have been in order. I don't know what that "record of a bullseye rash" might entail. But I hope her doctors at least looked at it and didn't just automatically make the same assumptions the author of the article did and misdiagnose her with a spider bite or cellulitis.

https://www.facebook.com/Pope0Francis0M ... 1477750539

Julia Bruzzese, "believe in the Miracle" looking for help.
October 31 ·
Once again, we have received a denial from our insurance company to treat Julia for Lyme disease.
Julia’s third round of extremely unreliable blood tests shows Lyme-Disease activity in her blood, the latest being at a higher level then the previous lab results. She also has a record of a bullseye rash, shows all the signs and symptoms of Lyme disease, and is suffering peripheral neuropathy. However, all this still falls short of the CDC's outdated guidelines to meet the requirements for treatment.
Realize, there are no reliable tests available for the diagnosis of Lyme disease.
The tests used to detect Lyme disease are antibody tests and are INACCURATE. Also, they are deemed unreliable when the patient is on, or has been exposed to, antibiotic treatment of any kind.
I am being forced, by my insurance company and our government, to let Julia suffer and deteriorate for monetary reasons at there benifit. It's not fair!
My insurance company has taken my money for so many years, with the understanding that if my family or I get sick, they will diagnose and treat us towards a path to wellness. Instead, I'm required to give up everything I've worked so hard to have to provide medicine to my child at my own expense.
Why the controversy surrounding Lyme disease?
Why must our health, especially the health and well being of our innocent children, have to suffer a political squabble and be subject to monetary nuances within our medical society of professionals?
Shouldn't our medical society, who is responsible for our health and well being, start taking responsibility?
Is my daughter's health insignificant?
Can this happen to you?
Did I work hard for my health benifits, home and family so I can watch my daughter deteriorate?
Is this fair?
Help her believe in her Miracle! Go to:
https://www.facebook.com/Pope0Francis0M ... =bookmarks, to raise awareness.
Visit Julia’s cause at http://www.gofundme.com/juliabruzzese, to show your support.
Thank you!
The Bruzzese family.

Also while she may live in urban Brooklyn, there is some footage assembled into a tribute that shows areas that the family seemed to have visited that may very well be tick habitat. She also has a dog that may have wandered off into those New York woods and bushes.

https://www.facebook.com/Pope0Francis0M ... =2&theater

Lorima
Posts: 914
Joined: Mon 29 Oct 2007 20:47

Re: British billionaire's family stricken

Post by Lorima » Thu 17 Dec 2015 3:19

Henry said, "what do you rely on to determine that someone actually has Lyme disease?"

It would be pretty silly for me to offer up an oversimplified LD diagnostic scheme of my own, when I'm complaining about Steere's oversimplified diagnostic algorithm.

I think, as with many diseases, it's a diagnosis that has to be made by considering the preponderance of evidence, in each patient's case. This is unfortunately complex; we don't have good tools, because the long-standing pretense that 2T works well, has blocked research and development. In my view, the very first thing that must be done is to throw out the current dogma, because it blocks realistic investigation. If that could be done, progress could be rapid, as new tools become available.

Sometimes diagnosis actually becomes very simple, once one realizes that the expert consensus is invalid. For example, there's the case of my family member who started out with Bell's palsy two months after a tick bite, but was declared definitively negative for LD due to insufficient antibodies to pass the ELISA. So he was given antivirals and steroids. That ELISA was a monkey wrench that ruined the process of differential diagnosis, and probably compromised his immune response to the Bb. Seven years into a mysterious, progressing neurological illness, we finally became aware of the LD controversy, read the foundational literature to determine who was right, and realized the ELISA was absurdly insensitive with regard to neurological LD. (Although as I've told you more than once, I'm willing to consider that it might be good enough for the special case of severe arthritis, with its extraordinarily elevated antibody titers, which Steere unfortunately misused as a model for all late-stage LD.)

LD is common, around Boston, where I live. And my family members are birders, hikers, and equestrians. Duh. Western blots with all bands reported clinched the diagnosis. There is some nice objective evidence for you: presence of antibodies specific to Bb. But you won't accept it, because it doesn't meet all the provisions of the aged dogma. That's a problem for blind followers, but not for scientists. Which, fortunately, are abundant in my family.

But can I make a diagnostic algorithm out of that, to idiot-proof LD diagnosis for busy doctors? No. That's just one patient's case, a pretty easy one, once the flaws in the standard disease model and diagnostic scheme are understood. There are too many variations in this disease, to reduce it to a little flow chart, like Dr. Steere's textbook figure. Sometimes people who know IDSA is wrong, try to make a competing algorithm, and ask me to critique their efforts. I haven't yet seen one I can endorse; as Ben Goldacre's most recent book is titled, "I think you'll find it's a bit more complicated than that." Doctors are just going to have to learn to think, and insist on making the time to do it, if they want to serve their patients well.
Last edited by Lorima on Fri 18 Dec 2015 4:02, edited 1 time in total.
"I have to understand the world, you see."
Richard Feynman

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