DCF is now involved in the cover-up, and are guilty of not only Obstruction of Justice, but endangering children and deliberately not getting them medical care for Lyme, which is "medical neglect."
1) Yale's Robert Schoen refuses to treat me for Lyme, pregnant, having given Lyme to my first two kids.
2) Tells me my blood tests would be negative before they were performed.
3) "Loses" this future negative bloodwork.
4) Gives my records to an MD I had never even heard of, without my permission.
All of that is fine with the Corrupticut Medical Board.
Yale "lost" the negative bloodwork, which was negative before it was performed:
Lara's Western Blot, performed a month after mine- We lost a weekend in between due to Donald Dickson being arrested for Domestic Violence:
LARA's Birthdate is 7/13/91. This was done 8/13/93:
NOTE THAT LARA'S BANDS WERE DIFFERENT FROM MINE
My Western Blot, Performed one month before (we lost a weekend due to my ex-husband being arrested for Domestic Violence as we tried to leave for Lara's Western Blot blood test).
STEERE: Maternal antibodies responsible for harm to the fetus, and FETAL TRANSMISSION:
NOTE THE RECOMMENDATIONS OF STEERE-- TREAT AND FOLLOW UP ON THE PREGNANCY:
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 medical negligence 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 negligence was an available form of correcting medical injustices.
I had Lyme disease since 1988, but it was not diagnosed until 1993. I had known 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 okay, but they had so conclusive proof.
When I was finally tested for Lyme disease in 1993, the result was positive. Having had two children in the interim, I had the children tested. One was very positive and the other had one faint band for Borrelia burgdorferi flagella (41).
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 Rheumatology.
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 negative.
We know it is possible to effect a negative blood test via use of strains 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 and surface antigen variation, such that a patient will not have matching antibodies and thus identifiable bands.
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 the criteria of his lab procedures regarding Western Blotting for Lyme disease.
I would like to request an investigation of his laboratory practices regarding Western Blotting to determine if at the time, Dr. Schoen’s lab was using the CDC recommended 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 matches exactly 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 missed cases of Lyme disease and State of CT Medical Quality Assurance follow up on the health 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 generate the same antiogen profile as the ones listed above.
Here is a clip from my testimony to AG Blumenthal regarding that visit and should lend some insight into what his own staff recognized as a lack of objectivity on Dr. Schoen’s part.
Feb 24, 1999
The Yale Rheumatology Experience:
I saw Dr. Robert Schoen. During the exam, Dr. Schoen acted like he believed and understood everything I said. He seemed to ask all the right questions. When 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 don’t know 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 having while 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. They come down here, crying, and saying, ‘If I don’t have Lyme disease, what do I have?’”
Issue 2) You will see that I met the CDC clinical description for Lyme disease in 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 patient may progress to *late disseminated disease* weeks to months after infection. The most common objective manifestation of late disseminated Lyme disease is intermittent swelling and pain of one or a few joints, usually large, weight-bearing joints such as the knee.
Some patients develop chronic axonal polyneuropathy, or encephalopathy, the latter usually manifested by cognitive disorders, sleep disturbance, fatigue, and personality changes. “.....
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 reporting 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 them daily.) And yet he ignored the fact that these clinical signs matched the CDC criteria for 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 you have.”
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 symptoms constitutes medical negligence. Especially since I was pregnant. I went to see a Yale doctor, 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 condition or referral.
I thought surely I would get the best available medical care since I was pregnant with Lyme disease and had evidence that I had passed it on to my children. Therefore, Dr. Schoen was medically negligent towards two people-- myself and my unborn child.
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 performed, those 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 amoxicillin for 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 DNA, but 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 supportive but not conclusive diagnostic test) such that the spirochetes entered his kidneys.
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 workup at 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 has headaches.
In the first paragraph of Dr. Schoen’s report, there were three errors:
A) I got the EM rash and had flu like symptoms for two months on and off, starting 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 comlpetely from the flu, but went on this top-level, fast, hilly century.
B) Dr. Stoff was in Great Barrington, MA, not Rhode Island, and recommended homeopathic remedies that included beef thyroid or thymus gland or some such concoction which I did not take because I am a pharmaceutical chemist and believe these expensive 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 replcement 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 obtained Dr. Schoen’s records. These were not returned to me. These were also missing from my medical record of Dr. Schoen’s, according to Mr. Piccirilli in Medical Records at Yale.
4. Dr. Schoen sent his report to a Dr. Terrenace Doherty who I had never heard of. I saw Dr. Wiseman previously and returned to him after this inane meeting with Dr. SChoen. Dr. Wisemen copied these results, but the letter was sent to Doherty.
Dr. Schoen had not my permission, did not even ask me if I knew this Dr. Doherty and yet he sent Doherty a report on me.
I do hope you will fully investigate practices at Yale under Robert Schoen regarding Lyme disease now and in the past.
I do hope you are able to discover what happened to my medical laboratory reports, all of them.
I do hope you ask Dr. Schoen or the lab manager at the time to produce the laboratory 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 not there 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 as those 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 nor diagnostic distinguishing tool to specify which patients had late disseminated Lyme disease and which had Depressson, Fibromyalgia or Chronic Fatigue Syndrome in this study.
Thank you and please keep me informed of your progress.
Kaathleen M. Dickson