Subject: I would ask NatCapLyme to kindly rethink their BS
Date: Oct 14, 2008 9:49 AM
Did I backdate the internet or no?
Who is telling the truth?
You want to complain about a lack of
scientific integrity from Camps A and B
Was I complaining about a strains game to
the CT Medical Board about Yale's Robert
Schoen or no?
This, too, is dated and a part of
several "courts'" records:
To: Kathleen W. Boulware, RN
410 Capital Avenue
MS # 12HSR
PO Box 340308, Hartford CT 06134
Re: Medical Negligence
Date of Occurrence: May 12, 1994
Type of Illness: Chronic Lyme Disease
Physician: Robert Schoen, Yale Rheumatology
From: Kathleen M. Dickson
23 Garden Street
Pawcatuck, CT 06379
I would like to report Dr. Robert Schoen of Yale University for
regarding myself and my unborn child. This occurred in May of 1994.
I am reporting
it now because at the time I had not the physical energy and strength
for a malpractice
law suit, and only found out that recently that reporting medical
an available form of correcting medical injustices.
I had Lyme disease since 1988, but it was not diagnosed until 1993. I
the entire time that I had an illness like Chronic Fatigue Syndrome,
but could find
no doctor who could find anything wrong with me.
I asked the Chronic Fatigue Association if it would be all right for
me to have
children and was told that the anecdotal evidence was that it would be
they had so conclusive proof.
When I was finally tested for Lyme disease in 1993, the result was
had two children in the interim, I had the children tested. One was
and the other had one faint band for Borrelia burgdorferi flagella
In April of 1994, I discovered I was pregnant again and saw Dr. Schoen
May 12, 1994
I forgot, (poor memory is the hallmark of chronic Lyme disease) to
bring the results
of the childrens’ Western Blots, so I faxed these results as soon
after the visit
as I could remember, and before Dr. Schoen called me to tell me the
results of the
lab work done in his office.
Enclosed you will find his report written the day of my visit to Yale
You will see that he concluded what would be the result of the lab
work as yet not
performed. The date of the report is the day of the visit. He called
me a week
or so after the visit to tell me the results of his Western Blot were
*** We know it is possible to effect a negative blood test via use of
Borrelia not from the US as is practiced in a laboratory recommended
by Allen Steere
near Boston, MA. Persons who acquired B. burgdorferi in the US are
not likely to
have strong antibody presence to, for example, Borrelia from Germany.
Both phenotypic and genotypic variation are at work for immune evasion
antigen variation, such that a patient will not have matching
antibodies and thus
*** I contend that Dr. Schoen could not have been sure of the result
if he did not
intend for the outcome to be negative; unless he knew something about
of his lab procedures regarding Western Blotting for Lyme disease. ***
I would like to request an investigation of his laboratory practices
Blotting to determine if at the time, Dr. Schoen’s lab was using the
strains of Borrelia burgdorferi, B31, 297, 2591.
As of March 15 2000, I still have not received the results of the
Wtern Blot perfromed
May 24, 1994, despite repeated requests.
If these strains were not used and instead others were substituted,
Dr. Schoen must
be made to demonstrate at his own expense that the antigenic profile
that generated by strains B31, 297, 2591, s per the CDC. If this
cannot be proven,
all of his patients records must be examined to identify any other
of Lyme disease and State of CT Medical Quality Assurance follow up on
of those patients. This is required by the CDC, Dearborn criteria
(1994). If he
used strains other than the ones litsed above, he must show that they
same antiogen profile as the ones listed above.
Here is a clip from my testimony to AG Blumenthal regarding that visit
lend some insight into what his own staff recognized as a lack of
Dr. Schoen’s part.
Feb 24, 1999
The Yale Rheumatology Experience:
I saw Dr. Robert Schoen. During the exam, Dr. Schoen acted like
and understood everything I said. He seemed to ask all the right
he was done with the exam he left and then came back and said, “So
you’ve come here
as an advocate for your child?
I hadn’t quite thought of it that way before, but I said, “Yes.”
Dr. Schoen then said, “I don’t think you have Lyme disease. I
what you have.”
I was shocked but at that point remembered that everyone had
told me not to
go to Yale for Lyme disease. So now I understood why I had been
warned. Dr. Schoen
deflected all my protestations but sent me down the hall to the lab
for a Western
Blot. It was the only negative Lyme result I ever got, curiously.
The phlebotomist was a pleasant woman who asked what test I was
looking at the order. She said, “Oh, Dr. Schoen. I should have known
it was going
to be a Western Blot.”
I said, numbly, “He says I don’t have Lyme disease.”
She said, “Mmm, Mmm, Mmm. He tells that to all his patients.
down here, crying, and saying, ‘If I don’t have Lyme disease, what do
Issue 2) You will see that I met the CDC clinical description for Lyme
Dr. Schoen’s own words:
CDC clinical description of Late Disseminated Lyme Disease:
LYME CLINICAL DESCRIPTION AND DIAGNOSIS
....”B. burgdorferi infection in the untreated or inadequately treated
progress to *late disseminated disease* weeks to months after
infection. The most
common objective manifestation of late disseminated Lyme disease is
swelling and pain of one or a few joints, usually large, weight-
such as the knee.
Some patients develop chronic axonal polyneuropathy, or
encephalopathy, the latter
usually manifested by cognitive disorders, sleep disturbance,
fatigue, and personality
Dr. Schoen’s report:
“She continues to have fatigue, headaches, poor memory, joint
achiness, vision problems,
sleep problems, and ‘feeling lousy’. She is also concerned about
whether or not
there might be ad adverse outcome for her fetus from Lyme disease.”
You see that I met the clinical description of Lyme disease as wel as
that I had had positive blood work and my 2 small children had
evidence of some
exposure. (They were never bitten. They had no rashes. I bathed
And yet he ignored the fact that these clinical signs matched the CDC
a clinical diagnosis of Late Disseminated Lyme disease. Dr. Schoen
said to me at
the end of the evaluation, “I don’t think you have Lyme Disease. I
don’t know what
I do believe that for Dr. Schoen to be administering a Lyme Disease
Clinic at Yale
at that time, and for him to say, “I don’t know what you have.”
without making any
recommendation for further workup to determine the cause of my
medical negligence. Especially since I was pregnant. I went to see a
BECAUSE I was pregnant and was worried about tranmitting the infection
to my uncorn
child. I was not cured from a few months on antibiotics after 5.5
years of illness.
Dr. Scheon made no recommendations of an alternate diagnosis of my
I thought surely I would get the best available medical care since I
with Lyme disease and had evidence that I had passed it on to my
Dr. Schoen was medically negligent towards two people-- myself and my
Issue 3) I wrote to Yale several times for my medical records of
this visit through
the years, but with enough persistence, finally received them
recently. Yale has
never been able to some forth with a copy of the lab test performed.
Not only did Dr. Schoen know the conclusion before the test was
results mysteriously disappeared. Dr. Schoen called me approximately
a week to
10 days later to tell me the results were negative. I have been in
touch with Greg
Piccirilli at Yale University Medical Records Department and he has
told me he has
tried but cannot find the Western Blot report.
The result of my pregnancy was good but not unremarkable. I went on
to become part
of the Lyme Disease Foundations Lyme in Pregnancy Study and took
the remainder of the pregnancy, from June until December 1994. David
was born 3-4
weeks early as result of acute fetal distress due to my acute nausea
and loss of
4 liters of fluids throughout the day before he was taken by C-
section, and weighted
5 pounds 11 ounces (2 IV lines, 4 attempts to find veins).
PCR of placenta, fetal cord blood and fetal urine were negative for Bb
this was only a snapshot of what was happening at the time of his
birth. It does
not indicate whether or not he was infected earlier in the pregnancy
only that it
is less likely, (40% accuracy of Urine Antigen Testing and this is a
but not conclusive diagnostic test) such that the spirochetes entered
Except for chronic headaches, my son David, age 5, seems mostly okay,
but I have
since had a Lyme disease blood test and simultaneously, an orthopedic
the Connecticut Children’s Hospital clinic for his headaches to
determine the cause.
The orthopedic eval was negative for congenital cervical scoliosis,
yet he stil
In the first paragraph of Dr. Schoen’s report, there were three
A) I got the EM rash and had flu like symptoms for two months on and
approximately July. ‘88.
Early September, I rode the century. So that was 1.5 months after the
EM rash, not
several months. I was still sick. I told him I had not recovered
the flu, but went on this top-level, fast, hilly century.
B) Dr. Stoff was in Great Barrington, MA, not Rhode Island, and
remedies that included beef thyroid or thymus gland or some such
I did not take because I am a pharmaceutical chemist and believe these
remedies should be scientifically proven to be effective or they
should not be available.
(I no longer think this way). Dr. Stoff did not recommend not thyroid
therapy, as Dr. Schoen reported.
C) The Western Blot results on myself andmy two children were faxed
to Dr. Schoen
and I requested that these faxed results also be copied to me when I
Schoen’s records. These were not returned to me. These were also
my medical record of Dr. Schoen’s, according to Mr. Piccirilli in
4. Dr. Schoen sent his report to a Dr. Terrenace Doherty who I had
of. I saw Dr. Wiseman previously and returned to him after this inane
Dr. SChoen. Dr. Wisemen copied these results, but the letter was sent
Dr. Schoen had not my permission, did not even ask me if I knew this
and yet he sent Doherty a report on me.
I do hope you will fully investigate practices at Yale under Robert
Lyme disease now and in the past.
I do hope you are able to discover what happened to my medical
all of them.
I do hope you ask Dr. Schoen or the lab manager at the time to produce
notebooks that pertain to the period of time May, 1994, in which it
will be demonstrated
which strains of Borrelia were used in Western blotting and whether or
are laboratory records of samples tested, drawn May 12, 1994, such
that I will know
what was the actual outcome, for posterity.
I do hope you will investigate how many other Lyme patients from April
1994 to May
1995 were seen and diagnosed based on the same criteria I was, as well
who were told they did not have Lyme disease, during this same period,
as this was
the period during which Dr. Schoen reported his “observed”
Consequences of Overdiagnosis
and Overtreatment of Lyme disease: and published this observational
study in 1998
in Ann Intern Med ; 128, 354-362.
I would like to know if you find that Dr. Schoen had no any clinical
distinguishing tool to specify which patients had late disseminated
and which had Depressson, Fibromyalgia or Chronic Fatigue Syndrome in
Thank you and please keep me informed of your progress.
Kaathleen M. Dickson
Kindly tell me how I backdate such correspondence?