A Short History of Lyme

[duncan]

Thank you Alan, Camp Other, Lorima, and Joanne60 and everyone else who has contributed to this history thread. I have a quick question. To frame Bb history in its entirety as an infectious entity, I think it fair to say we need data specific to the natural progression of Lyme. To the point, in this history of Lyme, have any meaningful studies been conducted to determine what happens if Bb is left untreated to run its course? What happens if we get infected with Bb and never receive treatment? Is there any data in this short history of ours that offers doctors/patients a blueprint of what they can expect 30 or 40 years down the line as they do with syphilis?

If this data does exist, why isn't being used comparatively with late stage lyme characteristics, as guidelines for disease progression? If it does not exist, why not - one can almost guarantee such a population exists, if only from the legions of under-treated whose disease evolution, for at least some, will have progressed as if no treatment had ever been rendered.

Sorry if this is deemed a topic detour, but I am hoping it is relevant.

[inmacdonald]

Dear Duncan,
Dr Allen Steere, [ not the historian by training as Dr Doris Kearns Goodwin is a true historian}
has recently in his Editorial in the New England Journal of Medicine Nov 15, 2012
discusses his conception of the natural history of Lyme disease for which no antibiotic therapy is administered. To quote from the NEJM Editorial,.."The infection usually began with an expanding skin lesion called erythema migrans, sometimes followed weeks later by Neurologic or cardiac involvement, and often followed later by arthritis. Attacks of arthritis commonly recurred over a period of several years, and occasionally erythema migrans reappeared faintly before episodes of arthritis. Thus, in untreated patients, relapse of the original infection was the rule."
He has a cohort of untreated patients from his years 1975-1982 from his Rheumatology practice
at Yale School of Medicine. These folks, culled from the "pre-spirochetal era" of Lyme disease {previously
nee "Lyme Arthritis" ] don't really qualify for "untreated patients, because Dr Steere prescribed
Corticosteroids alone to treat these people.
Steroid treatment alone for a bacterial illness is a therapeutic misadventure. We cannot elevate this treatment to malpractice because the spirochetal etiology of Lyme Disease was unknown in the Pre Spirochetal era prior to Dr Wily Burgdorfer's discovery.

Nonetheless, Dr Steere recounts that Lyme disease { for the group of patients who stayed with him and did not flee to Groton Connecticut where Antibiotics were prescribed without any peer reviewed proof that antibiotics were actually treating a known bacterial infection in th 1975-1982 years}:
Steere's faithful patients over time are reported by him {?? filtered data??] as gradually experiencing diminution of Arthritis { remember that he is a Rheumatologist,and not a Generalist}. The Arthritis
decline over a 6-8 year time scale would encourage the average reader to question the need to receive
antibiotic therapy at all. Neurologic sequelae are assiduously avoided in Dr. Steere's longitudinal history of Lyme Disease, and Neurologic sequelae deep to the meninges ( i.e. meningitis) have not and will not
appear in any of Dr Steere's Rheumatologic Lyme natural histories.

Post 1982, the issues of Medical Standard of Care, Medical Ethics, and Medical malpractice come into play.
Willfully withholding antibiotics for a known bacterial infection in the post 1982 era would of course be
un Ethical. We have no Evidence that Dr Steere declined to treat any of his Lyme patients with
antibiotics after 1982.

But then we must return to the Steere remarks about the Self limited clinical course of Lyme disease.
to be reconciled are two variables:
1. All Lyme Steere patients prior to 1982 received prescriptions for Steroids.
2. All patients diagnosed between 1972 to 1982 received prescriptions for 14 days of antibiotics after 1982.
How is it then possible for Dr Steere to write in his Nov 15,2012 NEJM editorial that the natural
history (untreated or 14 day treated) if Lyme patients under his care is a benign, gradually self healing history with no patients experiencing persistent Chronic Lyme Disease with viable Borrelia burgdorferi still circulating in their blood decades after the onset of their Lyme disease?
There is no data from a well medically supervised prospective or retrospective study to answer the
question of the natural history of untreated Lyme Borreliosis in the USA. European data offer the
examples of acrodermatitis chronica atrophicans and Mononeuritis multiplex (Bannwath's) as the residuae
of untreated Lyme borreliosis. Arthritis in European patients is under discussed, but perhaps not unknown.

Tardive manifestations of Lyme Disease are not on Dr. Allen Steere's Radar screen. Many patients over the years have left his practice, dissatisfied with their personal comes, or with his Classification of their illnesses as "antibiotic refractory arthritis" . What happened to Antibiotic refractory Central nervous system
Lyme Disease or antibiotic refractory Carditis/Cardiomyopathy, or antibiotic refractory blindness due to Lyme Temporal arteritis or antibiotic refractory Neuropsychiatric sequelae? Lyme is not A Rheumatologic Centered medical condition. The natural history of Lyme borreliosis involves All human organ systems.

Let the Word go Forth!

Best,
Alan

[Claudia]

inmacdonald wrote:

But then we must return to the Steere remarks about the Self limited clinical course of Lyme disease.
to be reconciled are two variables:

1. All Lyme Steere patients prior to 1982 received prescriptions for Steroids.
2. All patients diagnosed between 1972 to 1982 received prescriptions for 14 days of antibiotics after 1982.

I had a chance meeting with one of the original Old Lyme children from the Yale studies. She was placed in the placebo group. I have posted about it here http://www.lymeneteurope.org/forum/view ... 8&start=10, see the quoted post below. No antibiotics and no steroids. She remained in the yearly follow-ups at Yale and was also a patient of Dr. Steere's at least through a college flare-up.

o2bdead wrote:

I would like to see one long-term chronic Lymie who has gone into remission untreated. Can you point me to even one? Even a second-hand story of one would be okay.

o2bdead, here's two:

from The New York Times, June 17, 2001

Stalking Dr. Steere Over Lyme Disease
By DAVID GRANN

... In the late 1970's, as Steere's team fanned out along the Connecticut River, about 50 miles away in Westport, Conn., my 11-year-old sister woke up with tingling in her joints. My father, a cancer specialist, thought she had some sort of flu, but 24 hours later she couldn't walk. As my mother and I looked on, my father carried her out to the car and took her to Stamford Hospital. When he returned with her several hours later in a wheelchair, I could hear him talking to my mother in hushed voices in the bedroom. The next day, he took her to a specialist at Yale, who said that despite negative tests, she probably had an acute form of juvenile rheumatoid arthritis and might die. He recommended that my father admit her to the hospital and treat her with high dosages of steroids. But still unsure why her tests were negative, my father decided to wait. That night, he searched his medical books, trying to find out what she had. I could see him in the study, hunched over his desk, folding the pages in half. Medicine, he always believed, was like a language: each disease has its own meaning. But what was a disease that had no name?

[SNIP]

... When my father stumbled upon his findings in the Annals of Internal Medicine in 1977, my sister's disease had already subsided on its own, as it would in many, but her affliction now had a name -- Lyme," after the town in Connecticut in which it was discovered.

http://www.nytimes.com/2001/06/17/magaz ... 1220155200

Last year I was hiking on some local trails here in Connecticut with my dog and met a woman also out hiking along with her two dogs. As we hiked and began talking, I mentioned that my son and dog both had chronic Lyme infections. She listened to me and later into the conversation she told me she was one of the original Old Lyme patients that the Steere/Yale team studied back in the 1970's and she was coming up on the thirtieth anniversary of it all.

Here's what she told me:

She was six years old at the time that she became infected -- her family spent summer vacations camping at the beach camping grounds in Old Lyme. That summer she had a massive circular rash and became unable to move from terrible back, hip and knee pain. At its worse, her father had to carry her, she couldn't move. She had to start first grade on crutches. She was placed in the antibiotic placebo group in the study. She went on to fully recover within several weeks and has been followed up with yearly by Yale, tested each year with blood work. She still tests "highly positive." She has continually refused the antibiotics she has been offered each time based on each year's positive test. Mainly because she feels no need for them because overall she feels fine.

She said that Dr. Steere told her that "you never totally get rid of the infection," even with antibiotics.

What she told me is that she occasionally feels "Lymie" over the years, "you can just tell" she said "when it's the Lyme," this happens when she is really stressed, not sleeping well, and her immune system is further compromised from being sick from a bad flu or virus. She told me that the worse relapse she had was while away at college when she was over-tired from not getting enough sleep, stressed with class work during finals, and caught a bad stomach illness/flu that was making a lot of people ill in her dorm, including her roommate. She left her college campus in Colorado, returned home to Connecticut and saw Dr. Steere, who had left New Haven/Yale and was in Boston. He wanted to put her on IV antibiotics, but she refused it because she wanted to get back to college and didn't want to be hooked up to an IV line at college. She eventually returned to feeling well again.

When I had this interesting chance meeting with her she was 36 years old, had a successful professional career, commuting into NYC for her job, and had even bought her own home as a single woman. She had recently become engaged to be married. Her only fear was passing the infection on to any children they may have, based on the fact that she continues to test positive for an active infection.

She was orginally acutely ill with Lyme disease, never took any antibiotics, and in her case it resolved on it's own with only one major relapse in 30 years and several minor relapses.

Did the children in these two examples of untreated, long-term remission have just Bb and no other complicating TBI's? Is there something different about their immune systems? Their genetics? Will they eventually become chronically ill down the road?

[inmacdonald]

Dear Claudia,

Thank you very much for your posting.
The Clinical profiles are extremely important.
Not all untreated cases may follow these placebo or No treatment life histories.
It is encouraging to have some positive outcomes without antibiotic treatment at all,
particularly in an era antibiotics in general are over-prescribed for conditions which may be viral.

Unspoken , even at this point in time, are the consequences of Steroid therapy for
patients with the Juvenile Rheumatoid arthritis presentation for Lyme in the Mid 1970's.
Did The Steroids make the infection worse than it would have been
had no prescriptions been written at all.
Best,
Alan

[inmacdonald]

One More Data Point:


I neglected to appreciate in my first reading of Claudia's post One Key Fact:

If the New York Times article from 2001 is the whole truth,

then Dr Steere did not Issue a RECALL to his patients {Currently active in 1982 and
to Patients who were dismissed or lost to followup from his practice 1955-1982)

I believe that for ethical reasons, that Dr Steere was duty bound to contact
all of his patients diagnosed with Lyme disease from 1975-1982.
I believe that as the physician of record, it was incumbent upon him to
at least notify the 1975-1982 patients
that Lyme disease was recently reclassified
as an Infection, and that Each patient should have the opportunity to discuss
options for Antibiotic therapy in 1982.

Best,
alan

[duncan]

Thank you, Alan, for your reply, and for your input, Claudia, as well.

Other than an indirect slap at the aging diagnostic and treatment criteria, there is, of course, an obvious way to circumvent these malpractice issues. Just gather together individuals who were told they were seronegative for Lyme and were never treated 20 or 30 years ago due to the protocol of the time, but who suffered from symptoms and have evidence of Lyme today. Better yet, individuals must have been showing up at clinics in the NE with symptoms for decades, trying to find out what is wrong with them after being told they didn't have Bb, or never even thought to check, and FINALLY got tests which demonstrate they did have Lyme, and with a little sleuthing realize they most likely were infected with Bb for decades. One would think there are many of such victims of an inadequate system. Isn't there a disinterested source willing to do that sort of research?

I would think LLMDs are seeing such patients funneled their way, trickling in over the years. What an interesting survey if those doctors were contacted to see if they had any patients who fit that criteria and what those patients' conditions were.