Followup: Lyme, CT patients 10 -20 years later

Topics with information and discussion about published studies related to Lyme disease and other tick-borne diseases.
lou
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Followup: Lyme, CT patients 10 -20 years later

Post by lou » Sun 11 Nov 2007 17:23

FOLLOW UP: LYME, CONNECTICUT PATIENTS......10 TO 20 YEARS LATER

Lyme disease became a clinical entity in the United States as a result of investigations into a number of unusual arthritis cases among children in Lyme,Connecticut, in the 1970's. Now, an article in the Journal of Infectious Diseases (2001; 181: 453-60) describes the long-term impact of Lyme disease based on a follow-up of those patients 10 to 20 years later.

You will be pleased to learn that the overall current health status of each patient group was good. This is another in a series of articles telling us that Lyme disease isn't serious. If this kind of research had a theme song, it would be,"Don't worry, be happy!"

"How can this be?" you ask. "lt doesn't describe what is happening to me or others I know." In Lyme disease support groups, patients have had eye, knee, and heart operations. Some members of support groups are in wheelchairs. Other members are still getting treated years later to fend off the worst symptoms. When treatment stops, the symptoms return. A man in his40's has dementia. Some people are no longer able to work. However, the worst outcomes do not seem to get into print, and it is hard to avoid the conclusion that science can be very subjective.... depending on who is doing it.

The Lyme, Connecticut, follow-up was carried out by researchers at Tufts University and the New England Medical Center in Boston. They included Alien Steere along with Robert Kalish, Richard Kaplan, Elise Taylor, Lisa Jones-Woodward, and Kathryn Workman. Here is what they say:

"To determine the long-term impact of Lyme disease, we evaluated 84 randomly selected, original study patients from the Lyme, Connecticut, region who had erythema migrans, facial palsy, or Lyme arthritis 10-20 years ago and 30 uninfected control subjects. The patients in the 3 study groups and the control group did not differ significantly in current symptoms or neuropsychological test results. However, patients with facial palsy, who frequently had more widespread nervous system involvement, more often had residual facial or peripheral nerve deficits. Moreover, patients with facial palsy who did not receive antibiotics for acute neuroborreliosis more often now had joint pain and sleep difficulty and lower scores on the body pain index and standardized physical component sections of the Short-Form 36 Health Assessment Questionnaire than did antibiotic-treated patients with facial palsy. Thus, the overall current health status of each patient group was good, but sequelae were apparent primarily among patients with facial palsy who did not receive antibiotics for acute neuroborreliosis."

The research patients were selected from a pool of 582 people entered in the initial studies of Lyme disease at Yale from 1976 through 1983.This is a 14% sample of the original group. A larger number, 22%, were excluded because they had been lost to follow-up for reasons of death or moving away from the area. About half of the 152 patients contacted declined to participate, but about half of the decliners did agree to fill out a questionnaire. Most of the study patients, when first enrolled 10 to 20 years ago, were CDC positive, although not all of them were treated. Nearly all later obtained treatment, but some obviously had missed their window of opportunity because now they continue to have health problems. Does this sound like a good outcome to you....?

58% of the facial palsy group report memory problems

38% of the Lyme arthritis group now have chronic or episodic knee pain

23% of the facial palsy group now has residual deficits of facial nerve function, as determined by physical examination.


To evaluate and find meaning in this article requires a combination of statistician, experimental design expert, Lyme-literate physician or researcher, and logician. But even to a layperson reading it, several things leap out."Subtle"and "mild" are favored adjectives for symptoms described by these researchers. How could chronic knee pain be subtle? Is degenerative arthritis a mild condition? Also, the control group was small and was said not to differ in health problems from the Lyme patients - a conclusion that is hard to believe.The control group they used was composed of friends or neighbors of the patients in this endemic area. One of these volunteers was found to be CDC positive! It seems possible that others in the control group may also have had undiagnosed Lyme. Without a reliable test, we will never know. One begins to wonder about the concept of control group. No information is given as to current treatment status. Nor are we told how long the patients were treated over those intervening years.The patients with continuing problems are said to have post-Lyme disease syndrome, not active disease. No proof of this is offered just the opinion.

The article states: “The pathogenesis of post-Lyme disease syndrome is unclear. This syndrome is similar to fibromyalgia and CFS [chronic fatigue syndrome]. A higher lifetime prevalence of pre-morbid psychiatric illness or stressful emotional or physical events, including certain infectious illnesses, has been noted in patients who subsequently develop fibromyalgia or CFS. Perhaps diffuse or prolonged CNS [central nervous system] infection with B. burgdorferi in susceptible people triggers immunologic or neurohormonal processes that perpetuate this post-infectious syndrome. However, we do not know whether this is a direct effect of CNS infection or an indirect effect of a particularly stressful event. People who do not have this underlying susceptibility, those who are treated promptly with antibiotics or children in general may be less likely to develop subsequent fatigue, pain, or psychological distress."

These are fighting words to people suffering from such ailments, and they raise the blood pressure of Lyme patients receiving "psychological" explanations from doctors who don't take their illnesses seriously. Apparently, pop-psychology is more appealing than germ theory to some workers in science and medicine.

The researchers have lumped together people who got early treatment, late treatment, and no treatment, and compared them to a suspect control group. This conglomeration in the whole is then used to demonstrate a good outcome. Furthermore, they don't specify when active infection stops and post-Lyme syndrome begins. When, one wishes to know, do people who get no treatment or late treatment arrive at the post-Lyme condition? Does any amount of treatment at any point in time, whether it removes symptoms or not, transfer a patient automatically to the post-Lyme disease category? The whole concept of post-Lyme disease is ridiculously fuzzy and unaccompanied by any objective proof. lt is interesting to note that most of their patients with "post-Lyme disease syndrome" did not fulfill the complete criteria for chronic fatigue syndrome or fibromyalgia.

Another aspect of this study that attracts attention is the current antibody status of these patients:

28% of the EM group are still IgG positive
45% of the facial palsy group are still IgG positive
63% of the arthritis group is still IgG positive.

The study states that current seropositivity is
correlated with lack of antibiotic treatment early in the illness, but does not predict current symptoms.
The article concludes with a comparison of other studies of this type, which are said to be consistent in reporting symptoms of post-Lyme disease in antibiotic-treated patients, particularly if treatment was delayed after the onset of symptoms.The emphasis in all is on the post-infectious nature of the symptoms and the "good" outcomes, in which control group symptoms were not statistically different. Dr. Nancy Shadick and others carried out one of these studies on Nantucket Island. The journal article, published in 1999, states that,"Because persons with previous Lyme disease exhibited no sequelae on physical examination and neurocognitive tests a mean of six years after infection, musculoskeletal and neurocognitive outcomes seem to be favorable. However long-term impairment of functional status can occur." Yes, you read that right. It is definitely contradictory.

Upon reading the entire article, one finds other peculiarities: persons who did not have Centers for Disease Control (CDC) positive tests were enrolled as controls in this endemic area (a category which would include a lot of Lyme patients);some patients were still being treated; 37% reported a previous relapse;36% reported continuing symptoms despite previous treatment-early neurologic dissemination correlated with persistent symptoms and with longer duration before treatment was received. Yet, these people are described as having had "previous" Lyme disease, not current disease.

The references cited in all these studies are predictably heavy on Steere articles and reference each other to such an extent that it appears to be a coordinated effort. Could these studies be repeated by other people and arrive at quite different conclusions? It seems likely. The simplest, most commonsense explanation for persisting symptoms is persisting infection. Like syphilis, if left untreated in early stages, late stage Lyme may be treatable but difficult to cure. Why conjure up a new syndrome instead? Science should be as complicated as necessary but not more complicated.

The greatest irony in the article that describes the Lyme, Connecticut, follow-up is a final discussion about sources of bias. It does not include any bias that comes from the assumption of the post-infectious nature of persisting Lyme disease symptoms. Also, treatment practices in the 70's and early 80's are compared with those of today, and the authors state that,"...some patients remained untreated for years, which would be rare today,"and"...antibiotic treatment of those patients was often less than is recommended today."

Many readers will vigorously question both conclusions. Patients who are not CDC positive on tests are still being denied treatment. In some states, there are no doctors who will treat or report Lyme disease cases. The on-going persecution of doctors is guaranteed to put more patients into the delayed treatment or no treatment category. In addition, antibiotic treatment for the early Lyme, Connecticut, cases, when given, was most often for 10 to 14 days. The new IDSA (Infectious Diseases Society of America) guidelines (with Dr. Steere as a co-author) now recommend 14 to 21 days for early cases or 14 to 28 days in cases of acute neurological disease or arthritis. Even treatment for late neurological disease is only recommended for 28 days. In other words, treatment by the Steere group has really not changed much.

This kind of research will make you skeptical of science. If such articles keep getting printed in important journals, how accurate is the other material they print? Comparing the results of this study with the reality of Lyme disease experienced in "chronic" cases may make you think that there must be a parallel universe. Maybe, if we could all go there, we would all have good outcomes with minimal treatment.

(From Spotlight on Lyme newsletter, May/June 2001)

lou
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Re: Followup: Lyme, CT patients 10 -20 years later

Post by lou » Sun 11 Nov 2007 17:34

Here is the abstract for the journal article. Apparently the full text is still not available free even though it has been more than five years.


J Infect Dis. 2001 Feb 1;183(3):453-60. Epub 2000 Dec 27.

Evaluation of study patients with Lyme disease, 10-20-year follow-up.
Kalish RA, Kaplan RF, Taylor E, Jones-Woodward L, Workman K, Steere AC.

Division of Rheumatology/Immunology, Tufts University School of Medicine, New England Medical Center, Tupper Research Institute, Boston, Massachusetts, USA.

To determine the long-term impact of Lyme disease, we evaluated 84 randomly selected, original study patients from the Lyme, Connecticut, region who had erythema migrans, facial palsy, or Lyme arthritis 10-20 years ago and 30 uninfected control subjects. The patients in the 3 study groups and the control group did not differ significantly in current symptoms or neuropsychological test results. However, patients with facial palsy, who frequently had more widespread nervous system involvement, more often had residual facial or peripheral nerve deficits. Moreover, patients with facial palsy who did not receive antibiotics for acute neuroborreliosis more often now had joint pain and sleep difficulty and lower scores on the body pain index and standardized physical component sections of the Short-Form 36 Health Assessment Questionnaire than did antibiotic-treated patients with facial palsy. Thus, the overall current health status of each patient group was good, but sequelae were apparent primarily among patients with facial palsy who did not receive antibiotics for acute neuroborreliosis.

PMID: 11133377 [PubMed - indexed for MEDLINE]

Vermont
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Re: Followup: Lyme, CT patients 10 -20 years later

Post by Vermont » Sun 11 Nov 2007 22:57

Lou, thanks for the interesting study. Your points are well taken. It might also be interesting to look
up the cause(s) of death and status of the people from the 22% of patients who were "lost to follow-up for reasons of death or moving..."

cave76
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Re: Followup: Lyme, CT patients 10 -20 years later

Post by cave76 » Mon 12 Nov 2007 0:32

****It might also be interesting to look
up the cause(s) of death and status of the people from the 22% of patients who were "lost to follow-up for reasons of death or moving..."***

Do you think Melanie Reber might know anything about them? Just a thought.

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LymeEnigma
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Re: Followup: Lyme, CT patients 10 -20 years later

Post by LymeEnigma » Mon 12 Nov 2007 19:03

Lou said: You will be pleased to learn that the overall current health status of each patient group was good.
I love your wit, lou! ;)

Claudia
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Re: Followup: Lyme, CT patients 10 -20 years later

Post by Claudia » Mon 19 Nov 2007 15:23

So this is it??? This is ALL there is after three decades since the discovery of a new, fast growing infectious disease? This is the best that Steere et al can give the scientific and medical community: a 10-20 year follow up of 84 patients?

Let's look at the recently published U.S. CDC Lyme infection numbers spanning a 16 year period between 1990-2006 (please note small print on this map stating, by the CDC, that these REPORTED numbers are only about 10% of the actual estimated numbers of individuals that met CDC positive criteria for positive):

http://lymediseaseassociation.org/Maps/usa_total.gif

So, other than these 84 people on the study posted above, where are the long term studies on how this disease impacts health over a person's life time? And done by some group other than the usual "Lyme information" gatekeepers?

It's not like the controversy concerning the mainstream medical community's trivializing of this disease has been subtle or quiet: we have protests, rallies and internet campaigns in the U.S. of chronic Lyme disease sufferers and their doctors trying to get their clinical reality heard.

Isn't any endemic state's health department interested in the long-term health consequences of Lyme disease infection? Especially in the undertreated, late stage and those that have developed immune mediated issues? Or studies by any medical research or teaching institution?

It just makes no sense that government health agencies, or more of the mainstream scientific and medical communities aren't curious to get into the field and study, or at least survey, all these hundreds of thousands of people who have met CDC positive criteria going back to the 1980's, including the original cluster patients from the 1970's and see what symptoms, autoimmune diseases, health issues, etc., they continue to have or have developed. Why isn't anyone asking these questions?

84 of Steere's original patients: sure, that is an unbiased and broad follow up to publish after three decades of study and involvement by the original Lyme experts.

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LymeEnigma
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Re: Followup: Lyme, CT patients 10 -20 years later

Post by LymeEnigma » Mon 19 Nov 2007 17:48

You have a good point, Claudia. I have to wonder, also, exactly why so many patients "opted" not to participate in the study....

Claudia
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Re: Followup: Lyme, CT patients 10 -20 years later

Post by Claudia » Mon 19 Nov 2007 19:08

Perhaps they "opted" out of this study for the same reason the Lyme vaccine, Lymerix, another Steere project, was pulled from the marketplace: "lack of interest." ;) ;) ;)

Nick
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Re: Followup: Lyme, CT patients 10 -20 years later

Post by Nick » Mon 19 Nov 2007 21:54

Claudia wrote: 84 of Steere's original patients: sure, that is an unbiased and broad follow up to publish after three decades of study and involvement by the original Lyme experts.
yes, it shows how myopic Steere and friends are; apparently all other Lyme patient records (probably more than 99.9%) were discarded because they did not fit their stereotypical views about Lyme disease.

Claudia
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Re: Followup: Lyme, CT patients 10 -20 years later

Post by Claudia » Sat 14 Aug 2010 21:58

Bumping up

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