Repost: The Lyme disease Conspiracy

[Guest guest]

Note from Marta: How ironic that this was six years ago today.

August 5, 1993

The Lyme Disease Conspiracy

by ph J. Burrascano, Jr., M.D.

Reprinted from Senate Committee Hearing on Lyme Disease

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

There is a core group of university-based Lyme disease researchers and

physicians whose opinions carry a great deal of weight. Unfortunately

many of them act unscientifically and unethically. They adhere to outdated,

self-serving views and attempt to personally discredit those whose opinions

differ from their own. They exert strong ethically questionable influence on

medical journals, which enables them to publish and promote articles that

are

badly flawed. They work with government agencies to bias the agenda of

consensus meetings, and have worked to exclude from these meetings and

scientific seminars those with alternate opinions. They behave this way for

reasons of personal or professional gain, and are involved in obvious

conflicts

of interest.

This group promotes the idea that Lyme is a simple, rare illness that is

easy to avoid, difficult to acquire, simple to diagnose, and easily treated

and cured with 30 days or less of antibiotics.

The truth is that Lyme is the fastest growing infectious illness in this

country after AIDS, with a cost to society measured in the billions of

dollars.It can be acquired by anyone who goes outdoors, very often

goes undiagnosed for months, years, or forever in some patients, and

can render a patient chronically ill and even totally disabled despite

what this core group refers to as " adequate " therapy. There have been

deaths from Lyme disease.

They feel that when the patient fails to respond to their treatment regimens

it

is because the patient developed what they named " the post Lyme syndrome " .

They claim that this is not an infectious problem, but a rheumatologic or

arthritic

malady due to activation of the immune system.

The fact is, this cannot be related to any consistent abnormality other than

persistent infection. As further proof, vaccinated animals whose immune

system

has been activated by Lyme have never developed this syndrome. On the other

hand, there is proof that persistent infection can exist in these patients

because the one month treatment did not eradicate the infection.

Indeed, many chronically ill patients, whom these physicians dismissed, have

gone

on to respond positively and even recover, when additional antibiotics are

given.

It is interesting that these individuals who promote this so called

" post-Lyme

syndrome " as a form of arthritis, depend on funding from arthritis groups

and

agencies to earn their livelihood. Some of them are known to have received

large consulting fees from insurance companies to advise them to curtail

coverage for any antibiotic therapy beyond this arbitrary 30 day cutoff,

even

if the patient will suffer. This is despite the fact that additional therapy

may be

beneficial, and despite the fact that such practices never occur in treating

other

diseases.

Following the lead of this group of physicians, a few state health

departments

have even begun to investigate, in a very threatening way, physicians who

have

more liberal views on Lyme disease diagnosis and treatment than they do.

Indeed, I must confess that I feel that I am taking a large personal risk

here

today by publicly stating these views, for fear that I may suffer some

negative

repercussions, despite the fact that many hundreds of physicians and many

thousands of patients all over the world agree with what I am saying here.

Because of this bias by this inner circle, Lyme disease is both

underdiagnosed

and undertreated, to the great detriment to many of our citizens. Let me

address these points in more detail.

UNDERDIAGNOSIS

1. Under reporting: The current reporting criteria for Lyme are inadequate

and miss an estimated 30 to 50% of patients. Some states curtailed their

active

surveillance programs and saw an artificial drop in reported cases of nearly

40%,

leading the uninformed to believe incorrectly that the number of new cases

of

Lyme is on the decline. The reporting procedure is often so cumbersome, many

physicians never bother to report cases. Some physicians have found

themselves

the target of state health department investigators. Finally, too many

physicians

and government agents rely on the notoriously unreliable serologicblood test

to

confirm the diagnosis.

2. Poor Lyme disease diagnostic testing: It is very well-known that the

serologic blood test for Lyme is insensitive, inaccurate, not standardized,

and misses up to 40 percent of cases, yet many physicians, including many

of those referred to above, and the senior staff at CDC and NIH, insist that

if the blood test is negative, then the patient could not possibly have

Lyme.

This view is not supported by the facts. Lyme is diagnosed clinically, and

can

exist even when the blood test is negative.

The Rocky Mountain Lab of the NIH, which is the country's best government

laboratory for Lyme research had developed an excellent diagnostic test for

this illness nearly 4 years ago, yet further work on it has been stalled due

to

lack of funding. Incredibly, if not for private donations of just $5,000

from

the non-profit National Lyme Disease Foundation headquartered in

Connecticut,

then this reaseach would have had to be abandoned. An additional $30,000 was

donated by this organization to allow them to continue other valuable

projects

relating to vaccine development and disease pathogenesis. Yet, many

physicians

believe that thousands of dollars of grant moneys awarded by the government

to

other, outside researchers is poorly directed, supporting work of low

relevance

and low priority to those sick with Lyme. In spite of this, their funding

continues,

and the Rocky Mountain Lab is still underfunded.

3. The university and Government based Lyme establishment deny the existence

of atypical presentations of Lyme and patients in this category are not

being

diagnosed or treated, and have no place to go for proper care.

RESULTS: Some Lyme patients have had to see, as many as 42 different

physicians

often over several years, and at tremendous cost, before being properly

diagnosed.

Unfortunately, the disease was left to progress during that time, and

patients

were

left forever ill, for by that time, their illness was not able to be cured.

Even more

disturbing, these hard line physicians have tried to dismiss these patients

as

having

" Lyme Hysteria " and tried to claim they all were suffering from psychiatric

problems!

UNDERTREATMENT

1. Because the diagnosis is not being made, for reasons partly outlined

above.

2. University based and government endorsed treatment protocols are empiric,

insufficient, refer to studies involving inadequate animal models, and are

ignorant

of basic pharmacology. They are not based on honest systematic studiesor on

the

results of newer information.

3. After short courses of treatment, patients with advanced disease rarely

return

to normal, yet many can be proven to still be infected and can oftenrespond

to

further antibiotic therapy. Unfortunately, Lyme patients are beingdenied

such

therapy for political reasons and/or because insurance companiesrefuse to

pay

for longer treatment, upon the arbitrary and uninformed advice of these

physicians,

who are on the insurance company's payroll.

4. Long term studies on patients who were untreated or undertreated

demonstrated

the occurrence of severe illness more than a decade later,reminiscent of the

findings

of the notorious Tuskeege Study, in which intentionally untreated syphilis

patients

were allowed to suffer permanent and in some cases fatal sequelae.

5. The Lyme bacterium spreads to areas of the body that render this organism

resistant to being killed by the immune system and by antibiotics, such as

in

the eye, deep within tendons, and within cells. The Lyme bacterium also has

a

very complex life cycle that renders it resistant to simple treatment

strategies.

Therefore, to be effective, antibiotics must be given in generous doses over

several months, until signs of active infection have cleared. Because

relapses

have appeared long after seemingly adequate therapy, long termfollowup,

measured in years or decades, is required before any treatment regimen is

deemed adequate or curative.

6. When administered by skilled clinicians, the safety of long term

antibiotic

therapy has been firmly established.

The very existence of hundreds of Lyme support groups in this country, and

the

tens of thousands of dissatisfied, mistreated and ill patients whom these

groups

represent, underscores the many problems that exist out in the real world of

Lyme disease. I ask and plead with you to hear their voices, listen to their

stories,

and work in an honest and unbiased way to help and protect the many

Americans

whose health is at risk from what now has become a political disease. Thank

you.

<end>

" When you cease to make a contribution you begin to die "

Eleanor Roosevelt

[Guest guest]

Hi Marta,

I just dug this out, I have an original booklet from the hearing, with the

entire hearing. Thanks to you I now have it on computer,

You are a peach,

Connie, MI