Thank you

[Guest guest]

J.R. Labbe

jrlabbe@...

I’d like to thank you for at least considering my

response to Tom Hall's " Where was Granger " for

publication.

As you have probably discerned from my web site

(http://www.angelfire.com/biz/romarkaraoke/james.html),

there is controversy in the Lyme disease community

about treatment protocols.

One of the most recent controversies within the Lyme

victim community is the announced honoring of Dr.

Steere at The NIH Director's Second Astute

Clinician Lecture -- November 3, 1999, 3 p.m. Masur

Auditorium, NIH Clinical Center

(http://www.cc.nih.gov/ccc/lecture/astute.html).

The current vernacular now being used on

(onelist.com) and sci.med.diseases.lyme

(Deja.com) is Bum Steere (Dr. Steere), and Ah, Stupid

(Astute).

One of the participants (beth Feldman –

Item 1, below), sent an e-mail to NIH essentially

saying that as a Lyme disease victim, she objected to

Dr. Steere doing a presentation at NIH, and citing

reasons.

She then posted the response(s) received from NIH

(Item 2, below).

Why would her message generate a question about

security alerts? Maybe because paranoids have long

memories? See Item 3 below, from 1996, and Item 4

below, from 1995.

Thought you might get a chuckle, or maybe even an

article from it.

If you go the article route, an excellent collection

of web links on just about everything concerning Lyme

disease can be found at

http://www.geocities.com/HotSprings/Oasis/6455/lyme-links.html.

It contains over 4,100 categorized about Lyme disease.

Again, thank you for considering my response for

publication.

R.

501 Sycamore Lane, #327

Euless, TX 76039

817.540.2272

rjamesmartin@...

http://www.angelfire.com/biz/romarkaraoke/james.html

’s Lyme Disease Horror Story – How Lyme

Disease And Exploitation of ERISA Laws Can Ruin A

Life.

================================================================================

(Item 1) Dr. Steere

Importance: High

Dr. Gallin,

I have not responded to Feldman's email sent

this afternoon, and you are the only one I've

forwarded it to.

Maybe I'm overreacting, but should security be alerted

on Nov. 3, just in case. . .?

If there's anything you want me to do, please let me

know.

Hilda

================================================================================

(Item 3)

November 7, 1996

For more info, call :(503) 292-5271

LYME ACTIVISTS PROTEST MONOPOLY AT CONFERENCE ON

INFECTIOUS DISEASES

Seattle, WA -- Five women, members of NW Lyme Disease

Support Network, protested the monopoly on treatment

for Lyme Disease. The protesters crashed a conference

to rebut claims made by a Dr. Steere, the

powerful advocate of severe restrictions on medical

treatment for the disease.

Hospital administrators ejected, with the help of

security guards,four of the women who were quietly

passing out a scientific rebuttal to a paper by

Steere, case histories documenting the benefits of

longer more aggressive treatment and a sheet with ten

questions for Steere. The hospital claimed the

literature had not been approved.

Dr. Steere was speaking at Swedish Hospitals 4th

Annual Infectious Disease Symposium: Emerging

Infections.

Calls from Lyme activists across the country jammed

the switchboard at the Seattle hospital in support of

the protesters.

Lyme Disease infects a hundred thousand people every

year. Without adequate treatment, it can become

chronic and disabling. Treatment of the tick borne

disease has been severely restricted by Steere who

wrote the treatment protocol limiting people with Lyme

disease to four weeks of antibiotics.

Dr. Steere holds a twenty year monopoly on treatment

and research. Doctors,like Dr. ph Natole of

Saganaw, Michigan, who have disagreed with Steere's

treatment protocol have risked their medical careers.

Many patients and their doctors have been forced to go

underground for treatment.

According to the protest organizer, Rita Stanley,

" These academically spawned views are hotly challenged

by many front line clinicians and thousands of

chronically ill patients who contend that the

academically wrought guidelines for diagnosis and care

are obsolete, biologically unfounded and ethically

suspect. "

================================================================================

(Item 4)

I. LYMENET: Interpret Steere's Comments With Great

Caution

-------------------------------------------------------------

Sender: McFadden

I am writing this contribution to the LymeNet

Newsletter in response to the recent 10/13/95 Science

article [1] reporting the National Institutes' of

Health (NIH) plans to study the possible existence of

chronic Lyme disease. The main focus of the article

was the controversy between patient advocacy groups

and treating physicians on one side, and university

based researchers (who frequently dispute the

existence of chronic Lyme disease) on the other. The

article reported that the patient groups' tactics to

encourage the study of chronic Lyme disease " have

angered research leaders such as Steere of Tufts

University. " Is patient inspired research really so

bad? What if this is an important research area

university based physicians have chosen not to study?

Dr. Steere has been one of the most outspoken critics

of the existence of chronic Lyme disease [2], and one

of the most outspoken proponents of the success of

modest (10 - 30 day) courses of antibiotics [2]. In a

1993 paper [3], Dr. Steere writes that in Lyme disease

" Standard antibiotic treatment probably fails less

often than one might think. Most apparent treatment

failures actually reflect misdiagnosis. "

However evidence is mounting that the Lyme disease

spirochete, Borrelia burgdorferi, can persist in some

patients despite antibiotic therapy. The spirochete

has been isolated from the skin [4,5], spinal fluid

[5,6], synovial fluid [7], blood [8], ligamentious

tissue [9], muscle tissue [39] and iris tissue [10] of

patients after antibiotic therapy, including

intravenous (IV) and/or long courses of supposedly

curative antibiotics. In one large European study of

late Lyme disease treatment [11], 2 weeks of IV

Rocephin resulted in a cure rate of 31% (4 of 13

patients). When 2 weeks of IV Rocephin were followed

with 100 days of oral antibiotics, the cure rate went

up to 87% (69 of 79 patients).

A second European study of Lyme disease [12] showed a

50% cure rate with 3 weeks of antibiotics, and a 78%

cure rate with 8 weeks of antibiotics.

Perhaps examining some of Dr. Steere's earlier beliefs

can add insight to his belief that chronic Lyme

disease is extremely rare or does not exist. It may

surprise some to learn that in the first few years he

was associated with Lyme disease, Dr. Steere believed

antibiotics were ineffective. In a 1977 Lyme disease

paper [13], Dr. Steere and his colleagues state " We

remain skeptical that antibiotic therapy helps. " In a

1978 paper [14], Dr. Steere and his colleagues wrote

" To sum up the therapy of Lyme arthritis (Lyme

disease), it appears that at this point only

symptomatic treatment is feasible. " In a 1979 paper

[15] on the neurological abnormalities of Lyme

disease, Dr. Steere and his colleagues reported that

they " have noted no benefit from antibiotic

treatment. "

In an article in The New Yorker [16], a physician from

Shelter Island, New York, who was treating Lyme

disease with antibiotics as early as 1976, stated

that " When Steere assured me that the disease was

self-limiting, I stopped using antibiotics. "

Dr. Steere's early beliefs about antibiotics are

surprising, considering the literature that existed at

the time. A literature search revealed 18 papers

[18-35] reporting the efficacy of antibiotics in

treating Lyme disease (then called ECM disease) before

1979. Only one paper could be found (besides Dr.

Steere's) that reported no benefit [36]. In fact in

all 4 case report papers [20-23] on Lyme disease (ECM

disease) where the patient(s) acquired the disease in

the United States, published before Dr. Steere's first

Lyme disease paper [37], all patients received

antibiotics.

It is ironic that Dr. Steere, currently an outspoken

proponent of the near universal efficacy of 10 - 30

days of antibiotics in the treatment of Lyme disease,

was, with his colleagues, one of the lone voices in

the late 1970's insisting that antibiotics did not

help.

Dr. Steere apparently turned his beliefs into action,

or inaction as the case may be. In a 1987 paper [17]

co-authored with Dr. T. Schoen, Dr. Steere

reported: " To determine the clinical evolution of Lyme

arthritis, 55 patients who did not receive antibiotic

therapy for erythema chronicum migrans (ECM, the rash)

were followed longitudinally for a mean duration of 6

years [up until 1981]. " This paper goes on to describe

the ailments of many of these unfortunate individuals,

including frank arthritis, chronic synovitis, joint

erosions, and permanent joint disability.

Dr. Steere eventually conducted his own studies of

antibiotics, and discovered what many physicians

already knew; antibiotics frequently worked. In a 1985

paper [38] describing the efficacy of antibiotics in

treating arthritic manifestations of Lyme disease,

Steere wrote that in the period 1980-1982, " We found

that neurological abnormalities of Lyme disease

responded to high dose intravenous penicillin. " In a

1958 paper [28], 58 of 65 patients responded to

treatment with penicillin. One wonders why Dr. Steere

had to reinvent the wheel considering the 18 prior

papers spanning 3 decades, from both the US [18-24],

and Europe [25-35], describing the efficacy of

antibiotics in treating this illness. These studies

report exactly what Dr. Steere later found [38];

though not universally effective, most patients

treated with penicillin fared much better.

It is interesting that the only controlled studies

[11,12] of longer term antibiotics in helping to

prevent chronic or relapsing Lyme disease (both

successful) were performed in Europe. But then Dr.

Steere himself stated [1] that the proposed NIH study

of chronic Lymedisease " would never have been funded "

through the " normal mechanisms " of

investigator-initiated research. Unfortunately, I'm

afraid I agree with Dr. Steere on this point.

Dr. Steere's early insistence that antibiotics played

no role in the treatment of Lyme disease indicates

that his current statements and beliefs should be

interpreted with great caution.

McFadden, M.S.

4611 Governor's Drive

Apartment 1001

Huntsville, AL 35805

(205) 722-0474

References:

-----------

[1] Marshall, E: Science 270, 228 (1995)

[2] Steere AC et al: " The Overdiagnosis of Lyme

Disease " JAMA 269, 1812 (1993)

[3] Steere AC: Hospital Practice, pg 37 (April, 1993)

[4] Hassler D et al: The Lancet 338, 193 (1991)

[5] Preac-Mursic V et al: Infection 17, 355 (1989)

[6] Pfister H et al: The J of Infectious Disease 163,

311 (1991)

[7] Schmidli J., et al; Cultivation of B. burgdorferi

from Joint Fluid Three Months After Treatment of

Facial Palsey Due to Lyme Borreliosis; J. of

Infectious Disease 158: 4, pg 905-906 (1988)

[8] Masters E et al: " Spirochetemia Two Weeks post

cessation of six months of continuous p.o. Amoxicillin

Therapy " (Abstr. 65, Fifth Int'l Conf on Lyme

Borreliosis, Arlington, VA; 1992)

[9] Haupl T et al: Arthritis & Rheumatism 36, 1621

(1993)

[10] Preac-Mursic V et al: J of Neuroloophthalmology

13, 155 (1993)

[11] Wahlberg P et al: J of Infection 29, 255 (1994)

[12] Bojic I et al: Glas Srp Akad Nauka 43

(Yugoslavia), 257 (1993)

[13] Steere AC et al: ls of Internal Medicine 86,

685 (1977)

[14] Steere AC et al: Hospital Practice, 143 (April,

1978)

[15] Reik L, Steere AC et al: Medicine 58, 281 (1979)

[16] Roueche B: The New Yorker, 83 (Sept. 12, 1988)

[17] Steere AC et al: ls of Internal Medicine 107,

725 (1987)

[18] Hellerstrom S: Erythema chronicum migrans

afzelius with meningitis. Southern Med J 43:330, 1950.

[19] Flanagan BP: Erythema chronicum migrans Afzelius

in Americans. Arch Dermatol 86:410-411, 1962.

[20] Scrimenti RJ: Erythema chronicum migrans. Arch

Dermatol 102:104-105, 1970.

[21] Mast WE, Burrows WM Jr: Erythema chronicum

migrans in the United States: JAMA 236:859-860, 1976.

[22] Wagner L, Susens G, Heiss L, et al: Erythema

chronicum migrans: a possibly infectious disease

imported from Northern Europe. West J Med 124:503-505,

1976.

[23] RL et al: Cutis 17, 962 (1976)

[24] Naversen DN, et al; Erythema Chronicum Migrans in

America; Archives of Dermatology 114, pg 253-254

(1978)

[25] Lennhoff C: Spirochaetes in aetiologically

obscure diseases. Aca Derm Venereol (Stockh)

28:295-324, 1948.

[26] Hollstrom E: Successful treatment of erythema

migrans Afzelius. Acta Derm Venereol (Stockh)

31:235-243, 1951.

[27] Hellerstrom S: Erythema chronicum migrans

Afzelius with meningitis. Acta Derm Venereol

31:227-234, 1951.

[28] Janson P: Haufigkeit, klinisches Bild, Therapie

und Aetiologie des Erythema chronicum migrans. Med

Kiin 48:1139-1141, 1953.

[29] Degos R, Touraine R, Aroutte J: Erythema

chronicum migrans: Discussion of rickettsial origin.

Ann Derm Syph 89:247-260, 1962.

[30] Hollstrom E: Penicillin Treatment of erythema

chronicum migrans afzelius. Acta Derm 38:285-289,

1958.

[31] Binder E, Doepfmer R, Horstein O: Experimentelle

ubertragung des erythema chronicum migrans von Mensch

zu Mensch. Hautarzt 6:494-496, 1955. Abstracted,

Excerpta Med 10:453, 1956.

[32] Sonck CE: Erythema chronicum migrans with

multiple lesions. Acta Derm Venereol (Stockh)

45:34-36, 1965.

[33] Andermann I: Beitrag zur Begandkung des Erythema

chronicum migrans. Dermatol Wochenschur 149:441-443,

1964.

[34] Sonck CE: Griseofulvin: Unwirksam bei erythema

chronicum migrans.Hautarzt 21:514-516, 1970.

Abstracted, Exerpta Med 26:149, 1972.

[35] Weber K: Erythema chronicum migrans meningitis

eine bakterielle Infektionskrankheit? Munch Med

Wochenschr 116:1993-1998, 1974.

[36] Horstrup P, Ackermann R: Durch zecken ubertragene

Meningopolyneuritis (Garin-Bujadoux, Bannwarth).

Fortschr Neurol Psychiatr 41:583-606, 1973.

[37] Steere AC et al: Arthritis Rheum 20, 7 (1977)

[38] Steere AC et al: NEJM 312, 869 (1985)

[39] Hoffmann JC et al: Lyme disease in a 74 year old

forest owner with symptoms of dermatomyositis.

Arthritis Rheum 38, 8: 1157-1160 (1995)

=====

R.

rjamesmartin@...

<a href= " http://www.angelfire.com/biz/romarkaraoke/james.html " > 's

Lyme Disease Horror Story -- How Lyme Disease And Exploitation Of ERISA Laws Can

Ruin A Life</a>