Topic: need help interpreting an article by Kathleen Dickson
lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Greetings: I need help interpreting a discussion by Kathleen Dickson. It is found at the following website:
http://www.geocities.com/kmdickson0308/1-5.txt
I'm sure most of the regulars here know of Kathleen's ground breaking revelations into the politics and science of the lyme conspiracy.
I used to be in touch with Kathleen, but not anymore, so I can't ask her about this.
The following paragraph found in the above link tries to tie together the evidence she has provided to demonstrate Allen Steere's loss of integrity, how he does not fully explain the nuances of his diagnositic criteria for his own purposes, etc.
This paragraph can be found about 1/2 way down the link I gave above:
Beginning of quote: Patients will late disseminated Lyme disease with continuing symptoms are what the authors of the IDSA Guidelines used to refer to as "Chronic Lyme disease." Somehow, this previous data vanished fails their memory. Regardless, practitioners should know the CDC has made these distinctions and they have been useful to Allen Steere when he wrote his "Overdiagnosis article". It is true that the post-Lyme syndrome patients do not have Lyme disease as per the CDC clinical description. They have the "Post Lyme Syndrome", in most cases, according to these CDC clinical descriptions. End of quote.
I am not clearly seeing the distinction Kathleen is trying to draw in the last sentence. I know she is bringing the crux of her argument here, but the distinction isn't coming through. Possibly she accidentally worded wrong in her enthusiasm, or my lyme brain is not capable of getting it.
I need to get to the bottom of this as I am working on an article explaning the lyme conspiracy. I have a friend who is about to become the head of the infectious disease department at our local medical school, and he is open to hearing me speak on this subject. But how can I if I cannot express the distinction I know is trying to be made here by Kathleen.
Perhaps some of you know how to contact her and can forward this post of mine to her. I would love that if you could. Or even someone like Tom Grier can shed light on this.
I will also post this topic in "General" as I'm not sure if it is supposed to be in "Medical questions," even though I think it is a medical question?
Some of you here are very savy with the science of it all. Please help me.
Thanks to all who can participate in this issue.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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posted
I will make a stab at what she meant, or what I think she might have meant.
Before the bumsteere wrote his overdiagnosed article in 93, he and some of the other leading lights of the IDSA lyme guidelines were publishing articles that were more truthful, more accurate about what they were seeing in patients.....and even recognizing in some cases that it was indeed chronic infectious disease, not post infectious as they are now saying. Then, for some reason, there was an about face, and the lyme denial began in full force and has continued unabated to present day. No one really understands why, some people guess, but since the denial involves state and federal health agencies, it can't be that they are all taking money from insurance companies under the table.
This about face in their views does not seem to be built on science, no big scientific breakthroughs or evidence that would account for it.
And it is possible to go down the list of Wormser clones and contrast their past published articles with what was published later.
My personal view, entirely unproveable, is that the govt took so much heat for their failure to act earlier in the AIDS epidemic that they sure didn't want another infectious epidemic giving them bad press, so they decided to deep six it (and us too). Another possibility is that it is part of the usual footdragging on the part of govt, noticeable in a number of areas. Maybe they see these big problems not as job security but something they don't know the answer to, don't feel able to control, so they ignore it, as it is a possible source of embarrassment.
These are all motivations that have been seen before in a number of different arenas, not just public health.
And finally, on the point of the CDC definitions, I think she is saying that chronic lymies do not fit the CDC case definition. Most of us do not, at the late stage, have the blood test results that are required for reporting for surveillance purposes. But then, a lot of early cases don't either. That case definition misses a lot of people. And the CDC does admit that their case definition for surveillance should not be used in a clinical setting. But that happens constantly. When this was brought to their attention (in a hearing several years ago, which I think is online somewhere), they said they were not responsible for what doctors, ins cos, etc were doing with the case definition! Now, since one of the CDC employees was a co-author of the previous IDSA guidelines, their stance as innocent bystanders is certainly not truthful.
In epidemiology, they use surveillance to track trends, not absolute numbers because they know they a passive system will not pick up all the cases. So, they adopt a strict definition and assume that all those cases will be ironclad, and they will be able to say whether the trend is up or down. And the CDC has said in the past that Lyme is underreported. This is true of most diseases, however.
The problem with this neat little surveillance package is that lyme is not just underreported, it is VERY underreported. This is partly because it is not being diagnosed correctly so often. Also because anyone who does a good job with diagnosis and reports a lot of cases will soon have someone checking up on them. Reporting a lot of cases is not a good career move for a doctor when the govt wishes to keep the numbers low, so as to make it appear there isn't much of a problem with this disease.
In fact, in the southern U.S. in the early 90s (I think it was), doctors did report it there and were told that lyme was not in the south, and the cases were not accepted, just removed by the CDC! This is in spite of the fact that surveys of animals and ticks in the south had found Borrelia burgdorferi bacteria. If it is in animals and ticks, it is in people. Pretty amazing that a govt agency would deny published science, isn't it? But this keeps happening. The state epidemiologists in AL and NC have both been quoted in newspaper articles as saying there was no lyme in their states.
Well, I said finally, but here is one more point. Epidemiology for lyme, or any other disease, requires that the conditions of reporting and the definition stays the same, otherwise the numbers from one year to the next could not be compared or relied on for trends. But the conditions have not stayed the same, and the CDC knows this. When the requirement for lab reporting of positive cases was dropped in CT, there was a dramatic decline in numbers of reported cases. Not in number of cases, though, just in the cases being reported to the CDC. This can all be documented.
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Greatcod
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posted
I think the distinction may be between a presentation (Steere's Chronic Lyme) that includes both neuroborreliosis and arthritis, and the presentation that excludes arthrits, but includes muscle pain and weakness and mild cognative deficits, what they call Post Lyme Syndrome and ILADS calls Chronic Lyme. I am not sure, of course, that's my best guess.
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Do you think so? My impression is that anyone who has a short course of treatment as specified by the IDSA, is deemed cured, regardless of the remaining symptoms. A post infectious case is someone who still has symptoms but has had some treatment, according to their definition.
My case, for instance, is still arthritic and neuro, but they would say I have post Lyme syndrome.
And by the way, Mary, you should probably not include any remarks on motivation when you make your case to this doctor. No one really knows why this is being done. If you just stick to the facts, what is being done and leave out the why, you will have a stronger case. Some people have tried to say it was because Bb escaped from Plum Island, or that everyone in the Wormser/Steere camp is on the take financially. We can't prove any of this, and it sounds to outsiders like conspiracy theories wacko talk. So, better to leave all of this stuff out. The mismanagement of a medical/public health situation can be documented and demonstrated.
There are files there of published journal articles on various topics, including an impressive series on persistence. Printing out one or more of the files is going to make your case more than any number of opinions from lyme patients.
Posts: 8430 | From Not available | Registered: Oct 2000
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Greatcod
Unregistered
posted
Actually, the questions about definitons would leave anyone gasping for air. Steere acknowledges, studies and treats Chronic Lyme patients. His arguement is that they are very few in number. I don't know if they continually have to test positive or not. On IDSA, I cannot figure what they are talking about when they say "Late Lyme", in terms of months or years from the start of the infection. IDSA is pretty clear on describing people who are treated within a short time after infection, and who continue to present with so called non- objective symptoms, as having Post Lyme Syndrome. But what about those of us, including poor me, who only get diagnosed or treated after five or more years, and continue to have non-objective symptoms? I can't quite figure that out. And I don't know of any study that shows anyone diagnosed late, say after 5 years, getting better after 30 days of ABX. The waters are very murky, as is my mind.
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
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Some very good comments here. I am particularly interested in what kathleen is saying here, even though I am sure I am missing her point.
I understand the mis management of public health. But why would a group of "authoritative" doctors do this? There has to be an answer, even if I don't broadcast it.
I personally believe that there was huge money and prestige involved in lymerix. And when that experiment went down the drain, the big cover-up unfolded.
Lymerix is behind the changing definitions of lyme, the perpetuation of the stupid test kits based on the vaccine definitions, so forth.
To turn around and declare the entire fiasco a mess is more than these stupid ducks are capable of, for the greater good.
So they have dug in their heels, and we suffer.
That is what my feelings are, and I'm trying to get the data to demonstrate it.
Yes, I understand that trying to explain the "why" can make one sound like a wacko, but I should have a statement ready to pull out of my pocket, because the "why" is going to be asked.
Please send forth further commentary on this subject as it is all welcome. Links to various texts is also welcome.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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Patients will late disseminated Lyme disease with continuing symptoms are what the authors of the IDSA Guidelines used to refer to as "Chronic Lyme disease." Somehow, this previous data vanished fails their memory. Regardless, practitioners should know the CDC has made these distinctions and they have been useful to Allen Steere when he wrote his "Overdiagnosis article". It is true that the post-Lyme syndrome
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