(I know, the formatting of this post isn't very good. I'll fix it when I'm not doing it on the iPhone.
Lyme borrelia focused Autopsy in 2014- Special request by inmacdonald » February 10th, 2014, 3:58 pm
For General Distribution: Notes on the Requests for a Lyme focused Autopsy
I am writing to you to provide general information about the time consuming process of a borrelia/lyme focused autopsy in the situation of a patient who may or may not have had chronic active disease at the time of Death.
An autopsy of this type is a huge undertaking for the pathologist.
In most cases , there is no payment for the pathologist and laboratory
special services connected with such an undertaking..
Accordingly, since there are no guarantees that hours of work will yield an answer in the affirmative or in the negative, both the family and the pathologist should enter into information sharing concerning borrelia test results during life and
therapies administered, and clinical improvements or deteriorations from such efforts.
If the condition of Chronicity was arthritis, then a problem oriented investigation might be confined to the joint with the maximal symptoms.
If the condition was cardiac in nature, then limited examination of the heart would be appropriate.
If the condition was in the nervous system, then examination of the brain only would be the proper pathway.
Brain banks are established around the country at Medical Schools for autopsy study of the brain- with donations welcome from those who were neurologically "normal" at death, and also those with defined or poorly understood brain diseases at the time of death.
The Brain bank route is the best , in my opinion for potential neuroLyme cases, because it places
the patient brain examination in the hands of Medical school professors
of neuropathology.
There is no cost to the family for these studies.
Often, the brain removal itself is paid for by the brain bank. Otherwise the family must
assume some of the cost of organ removal and proper legal transport to a brain
bank
center.and time is of
the essence in completing the brain removal, to preserve tissue for
examination. One half of the brain is quickly frozen ( either right or left) and
is transferred to the brain tissue resource center. Spinal fluid is also obtained.
The other half of the brain is placed in liquid fixative ( Brain formalin) and is
also transferred to the Brain bank.
If Spinal Cord disease was noted during life, then the more tedious removal of the Spinal
cord is indicated.
In all brain and Spinal cord removal procedures, the personnel mus wear protective
clothing an masks and Kevlar gloves to avoid the possibility of
being exposed to an infectious illness which was present at death
but not diagnosed during life.
In all autopsy investigations, other than those mandated by law as Forensic
autopsies, appropriate permission must be sought from the legitimate
next of kin. There is a protocol in each state which guides this permission
process For example, if the decedent died without a spouse and without living parents, then each and every sibling MUST consent to the Autopsy. If a Single sibling votes against the autopsy, the procedure will not be legally permitted.
For cases in which the blood relatives are more distant than siblings of the
decedent, please consult the Hospital Administration, if the death was in hospital,
or the Local Health Department.
Ideally, there is something to be learned from each and every autopsy.
In practice., many autopsy examinations do not produce "teachable moments"
for either the family of the decedent or the physicians who cared for the patient.
If "routine" studies do not answer the family's questions, it is possible, in select cases to enlist the advanced services of a borrelia/Lyme Research facility
Borrelia are difficult, very very difficult , to see microscopically in tissues.
Expert examiners with specialized expensive microscopes and with a
refrigerator full of specialized antibodies to borrelia and with the
safety laminar air flow hoods to attempt to cultivate borrelia from
autopsy tissue.- all of these special talents are often necessary to prove
that borrelia was present in the decedent at the time of death.
Individuals with this special expertise are few in the USA and in Europe.
Workload and Teaching responsibilities often mandate that Lyme focused
autopsies are turned away. So to receive a Lyme focused autopsy is a special event for the professionals doing the work and for the curious family. It is not to be assumed that all requests can be accepted.
An Autopsy is a model, nonetheless ,for medical education.
Respectfully,
Alan B.MacDonald MD, FCAP, FASCP
February 10, 2014
Sean Patrick Maloney for Congress