CDC Promotes Spread Of Lyme Disease By Marjorie Tietjen Director For Lyme Disease Concerns Common Cause Medical Research Foundation Daystar1952@yahoo.com 5-3-5
It certainly appears that The Centers For Disease Control (CDC) is encouraging the spread of Lyme Disease (borrelia burgdorferi) and other chronic illnesses, which may be caused by various strains of spirochetes currently not being tested for.
To begin with the CDC states that Lyme Disease is a clinical diagnosis. This means that when determining whether a patient may or may not have lyme disease, the physician must consider the extensive array of symptoms which present in lyme disease and the history of the patient.. Medical tests should only be used as an adjunct or aid in this determination.
The CDC uses specific criteria for interpreting the Western Blot in regards to Lyme Disease. The CDC states somewhere in their fine print that their very restrictive criteria is only to be used for surveillance purposes and not for patient diagnosis. However , this crucial fact is not made clear to the health departments, laboratories or doctors. As a result thousands...perhaps even millions of people with chronic illness are being misdiagnosed and left untreated.
In February of 2004 Connecticut held a hearing which addressed this issue. Attorney General Blumenthal requested that Yale, the National Institute of Health (NIH) and the CDC attend the Hearing. All three institutions declined the invitation. We then sought the aid of our congressmen who did end up convincing the CDC to attend. One of the main forces behind the non treatment of Lyme is Yale's stance that 3 to 4 weeks of antibiotic treatment is almost always sufficient to produce a cure. Certain doctors at Yale contend that after the 30 day treatment period, if one still has the exact same symptoms, it is no longer active chronic lyme but is now suddenly an autoimmune disorder.
They have no proof to back this up and this was made evident when they did testify at our first Lyme hearing several years back. Perhaps this is why they were reluctant to attend our most recent Hearing. Many patients who go to Yale for help with suspected lyme are being diagnosed with Multiple Sclerosis, Fibromyalgia, Chronic Fatigue syndrome, ALS and even Lupus. Yale evidently feels there is no such thing as chronic active Lyme Disease.
The main focus of the Hearing last year was to educate the medical community as to the extensive problem of lyme being misdiagnosed as many other diseases and conditions. One of the prime reasons for this medical disaster is that doctors are placing too much reliance on the two reccomended lyme tests, the Elisa and the Western Blot. At our Hearing Attorney General Blumenthal strongly advised the CDC to alert the health departments, laboratories and doctors not to use the over restrictive criteria, involving the Western Blot, for diagnosing Lyme Disease. Again.....this is one of the main factors as to why so many people are not being properly diagnosed and as a result are becoming disabled and some are even dying. You may not hear of people dying from lyme disease. Usually you will be told that death was from a heart attack or some other end result of the Lyme Disease process. Scientists are just beginning to realize the extensive nature of this disease and it's coinfections.
It has been a year now since the Hearing and we've been waiting for the CDC to correct this unnecessary situation. Instead of backing up their original statement not to use CDC criteria for diagnostic purposes, they have diverted the public's attention from that issue by coming up with a different angle.
I was directed to the CDC website On April 3, 2005 there were two new highlights posted. One was entitled "Caution Regarding Testing for Lyme Disease" and the second one was "Information About Lyme Disease on the Internet". The impression left by these articles is that only government websites or those websites who are partially sponsored or affiliated with certain government agencies, have the correct information concerning Lyme Disease. As far as testing goes, it appears that the tests which are finding an extensive amount of lyme in the population ,are the very ones the CDC is claiming are inaccurate.
The particular tests which the CDC is discouraging the use of are the urine antigen test, the polymerase chain reaction tests and the immune fluorescent staining for cell wall deficient forms of Borrelia burgdorfei (lyme). On the whole patients have had very positive results using tests of this sort as a basis, along with clinical judgement, for antibiotic treatment. There have been many very ill patients who have tested negative on CDC approved tests, went on to be further tested by these other methods, were found to be positive, and then improved on antibiotics. It is ironic that the CDC is throwing a negative light on the very tests which appear to be saving people's lives.
Antibody tests have limited usefulness, especially in chronic Lyme Disease. The following is a very important list from Dr.Robert Bransfield's website http://www.mentalhealthandillness.com /seronegativelymedisease.html
It shows the many reasons why a patient can test negative on these CDC approved tests and still have Lyme Disease. It would be an excellent list to take with you when visiting your doctor. After looking over this list one can see why depending on antibody testing for a diagnosis can be very risky business. Why then would the CDC encourage us to depend on the antibody tests to diagnose Lyme Disease? Why are they discouraging the use of the very tests that have already helped countless patients access treatment and as a result gain concrete improvement?
The specific tests and the order of testing, which the CDC suggests, results in vast underdiagnosis. Is this the goal? Could it be possible that the CDC is intricately meshed with the pharmaceutical companies? Is a treatable epidemic being covered up for the purpose of financial gain? When a patient is handed a negative diagnosis for Lyme Disease they proceed to visit specialist after specialist seeking a diagnosis. This results in multiple isolated diagnoses, such as irritable bowel syndrome, carpal tunnel, migraine headaches, fatigue, depression, ADD, eye problems, heart problems, foot and leg pain, etc. Lyme Disease can present with 40 or more symptoms throughout the body.
It becomes obvious that marketing many symptomatic treatments is much more profitable than promoting one which cures. What are the real causes of our ever expanding list of chronic illnesses and conditions which have no definitive tests, causes or cures? Microbes and chemicals in our food and environment obviously are playing a much larger role than is being admitted by the government agencies who are supposedly responsible for our health.
I would like to speak a bit more concerning the article on the CDC's website "Inaccurate Information About Lyme Disease on the Internet" by James D. Cooper M.D. and Henry Feder Jr. M.D. The basis of the article is to shed suspicion and doubt concerning any lyme disease information we find on the internet that isn't sponsored or approved by the government. According to this article only government research or approved research is valid. Evidently the government and or mainstream medicine discounts any empirical evidence gained through hands on experience in treating chronic active lyme.
The Infectious Diseases Society of America and the CDC have no treatment protocols for chronic lyme because they state there is no such thing as persistent infection. I challenge them to provide proof to back up this statement. In fact, The Greater Hartford Lyme Disease Action and Support Group is posting a 10, 000 dollar reward to any doctor or researcher who can prove beyond a doubt that lyme disease cannot be a persistent infection...that it is absolutely cured and totally erradicated from the body with 6 weeks of antibiotic treatment. There are many articles, studies and personal experiences which prove that lyme can be a persitent infection despite long term antibiotic treatment. To check out some of the articles and studies which back up the chronic persistent infection stance...please visit http://www.lymeinfo.net/medical/LDPersist.pdf
There are a couple of other points I would like to address. The CDC recpmmends one dose of 200mg of doxycycline as prophylaxis (preventative measure) when bitten by a tick. In their view this is supposed to be sufficient. I am a personal witness to the fact that this is not always sufficient. I have a friend who was bitten by a tick. The tick was removed and 100mg of doxycycline was taken immediately, twice a day for 30 days. The day after the medication was stopped, this person presented with multiple lyme rashes all over their body, suggesting a systemic infection. When tested this person was CDC postive. So, not only is one dose not always enough, but in this case 30 days was not enough!
The article by Cooper and Feder also states that "Lyme Disease has never been passed in breast milk to an infant." (American Academy of Pediatrics). How can a sweeping statement like this be credibly made? To begin with there are studies out there that have shown Bb to be present in breast milk...... and a study from Diagnostic Microbiology and Infectious Disease vol 21, Issue 3 March 1995, page 121-128 entitled "Detection of Borrelia burgdorferi DNA by polymerase chain reaction in the urine and breast milk of patients with Lyme". The CDC may then tell us that this does not prove that it can be passed on to the infant. This may be true but testing is so inaccurate that this statement cannot be proven. It would also be helpful when evaluating this statement, to know what percentage of the nursing population, and their infants, have been tested for lyme. Studies with animals have shown that the organism has been transmitted to infant mice through breast milk.
Independant researchers and lyme literate doctors who are presented day after day with cause and effect evidence involving thousands of patients have no doubts in their minds that Lyme Disease and some of it's coinfections can be chronic. Why is this empirical evidence being discounted and covered up? Why are doctors being persecuted for curing and or improving their patients with long term antibiotics?
On May 7, in Connecticut, the Greater Hartford Lyme Disease Support and Action Group is holding a conference you do not want to miss. If you have any loved ones or know any friends with disease conditions such as ALS, M.S, Lupus, Fibromyalgia, Chronic Fatigue Syndrome, ADD, OCD, Autism, Bi Polar Depression, Alzheimer's , etc , please encourage them to come to this conference. The misdiagnoses concerning these diseases are staggering. This conference is featuring highly respected researchers from across the country who will be addressing these issues. and how that many times Lyme disease plays a role in these diseases. For more information you can e-mail me at daystar1952@yahoo.com
Let's all come together and make a difference. Much of the chronic illness in our country is tragic and unnecessary. We need to take back responsibility for our own healthcare.
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Paul Chill, associate dean of academic affairs at the University of Connecticut School of Law, said Lopez, in deciding the case, "was appropriately intolerant of official malfeasance and abuses of power in the child protection system."
CT Law Tribune article on Judge Lopez' reassignment
Chill, Paul Tue, 04 Jan 2005 06:50:30 -0800
The Connecticut Law Tribune
Jan. 3, 2005
Page 1
By Lisa Siegel
TRANSFER TEMPEST
Juvenile justice advocates and members of the state's Latino community are
mounting a joint effort to reverse the abrupt transfer of Superior Court
Judge Carmen L. Lopez from the Regional Child Protection Session in
Middletown to the New Haven civil court session.
Since her appointment to the bench in 1996, Lopez has earned a national
reputation in child protection law, receiving accolades from the juvenile
matters bar for her dedication and competence. So when she was suddenly
reassigned in October from the Regional Child Protection Session -- where
she had served since 2001, adjudicating complex trials on the termination of
parental rights and the emergency removal of children -- the move sparked
widespread puzzlement and outrage.
"We are upset and alarmed by the sudden transfer of a stellar judge," said
attorney Juan A. Figueroa, a former state representative from Hartford and
current president of the Universal Health Care Foundation of Connecticut.
Figueroa, also former president and general counsel of the Puerto Rican
Legal Defense and Education Fund in New York, has known Lopez professionally
for over 20 years. "We are looking for answers as to why the judicial
administration would yank someone with such sterling credentials and who is
so effective with the African-Americans and Latinos in her court," he
proclaimed.
State Child Advocate Jeanne Milstein echoed Figueroa's assessment. "My
experience with Judge Lopez, and the experience of people in my office, has
been extremely positive. She is deeply committed to children and very
dedicated to the best interest of kids," Milstein said.
Juvenile matters attorneys say Lopez has a remarkable ability to settle some
of the most adversarial parental termination cases through the strength of
her personality and her commitment to treating parents with dignity and
compassion.
In an interview, Lopez claimed to be in the dark about the reasons for her
unwelcome transfer. She said Deputy Chief Court Administrator Thomas F.
Parker gave her no explanation when he called one afternoon in October and
told her to report to New Haven civil session the next morning. "When I got
there the next morning, there wasn't even a courtroom or chambers for me,"
she said.
Lopez serves on the National Council of Juvenile and Family Court Judges,
has had books published on child welfare, and recently returned from Puerto
Rico, where she was asked to teach judges. She is also a member of the
Judicial Department Speakers' Bureau, speaking on issues involving child
welfare and juvenile justice.
The Judicial Department refused to comment on why Lopez was reassigned. "It
should be noted that a judge's assignment at a particular point in time is
not permanent," Chief Court Administrator Joseph H. Pellegrino said through
a spokeswoman. "As it is with any other judge, I cannot predict at this
point where his or her next assignment may be." Though most reassignments
are made in September, some do occur throughout the year, Pellegrino noted.
Lopez has retained attorney David S. Golub, of Silver Golub & Teitell in
Stamford, but refused to say whether she is contemplating legal action
against the Judicial Branch. Figueroa observed that it's useful for anyone
in her situation to know their rights. Golub, who was on vacation last week,
and other lawyers at his firm did not return numerous telephone messages by
press time.
Community support has mobilized in support of Lopez, according to Figueroa.
At a meeting on Dec. 22, a broad-based group of Latino business people,
educators and juvenile justice advocates proclaimed their intent to demand
answers from judicial administrators. Though the group's immediate goal is
the reassignment of Lopez back to Middletown's child protection session, its
members assert that the public has a right to know the reason behind the
sudden transfer of a popular and experienced judge. "Judicial administration
is different from judicial adjudication," Figueroa said. "Decisions by the
judicial administration shouldn't be secret."
Figueroa said the Lopez matter is an example of why child protection courts
need to be opened to the public.
Legislation to open child protection sessions to the public is expected to
be introduced during the legislative session that starts this week,
according to Martha Stone, executive director of the Center for Children's
Advocacy. Similar legislation failed to pass in 2004 amidst Judicial Branch
opposition.
On Jan. 6, Figueroa's group plans to hold a "media event to increase the
clamor to open the courts" and to publicize Lopez's plight in anticipation
of her review before the legislature's Judiciary Committee on Jan. 12. All
Superior Court judges are appointed by the General Assembly for eight-year
terms.
Figueroa doesn't anticipate any problems with Lopez's reappointment. But
Sen. Andrew J. McDonald, who co-chairs the Judiciary Committee, is not as
confident. "I have heard anecdotal unflattering comments about Judge Lopez,
but no one has submitted evidence of objective material to call into
question her qualifications as a judge," McDonald said last week.
Figueroa acknowledged that Lopez is sometimes outspoken. He wondered whether
it was coincidental that Lopez was reassigned soon after her opinion in the
Lindsey P. case. In the ruling, published in August, Lopez lambasted the
state Department of Children and Families for "an appalling combination of
arrogance and ineptitude" in intentionally manipulating facts to obtain an
order of temporary custody. Paul Chill, associate dean of academic affairs
at the University of Connecticut School of Law, said Lopez, in deciding the
case, "was appropriately intolerant of official malfeasance and abuses of
power in the child protection system." Chill, who has run advocacy clinics
on child protection issues for 16 years, said Lopez was the first judge to
hold DCF accountable.
Chill said he wonders whether Lopez was reassigned in retaliation for her
vocal support of opening juvenile courts to the press and the public. "Judge
Lopez had been, and continues to be, publicly critical of the child
protection system -- of which the juvenile courts are a major component --
and her advocacy of open juvenile courts is grounded in that critical
perspective," Chill said. "It is quite conceivable to me that the image of
Judge Lopez holding forth from the bully pulpit as a sitting juvenile court
judge was a disturbing one for some Judicial Branch administrators."
CT Law Tribune article on Judge Lopez' reassignmentChill, Paul
HARTFORD (AP) - A judge has ordered Department of Children and Families social workers to include information that may be favorable to a parent or guardian's defense when the agency is seeking custody of children, The Hartford Courant reported Thursday.
The order came as the judge found a state social worker distorted the facts to build a stronger case for removing a 4-year-old girl from her home. The newspaper obtained a confidential copy of the March ruling.
Judge Carmen L. Lopez found that the worker had ignored evidence that the girl's collarbone injury may have been an accident, not abuse.
The case shows "an appalling combination of arrogance and ineptitude" by DCF, and unnecessarily traumatized the girl, Lopez wrote.
The child welfare agency has instructed its workers to comply with the ruling, said DCF spokesman Gary Kleeblatt.
"We recognize that it's important for our affidavits to disclose all of the relevant facts including those that support the parent's position," Kleeblatt said.
According to court records, Lindsey P.'s case was reported to DCF officials on March 18, 2003, by a pediatrician who called the agency's hot line and said the girl had a fractured right clavicle and that the girl said it was from her father "throwing her." The doctor said the injury was not uncommon, and may have been an accident.
Police investigated and determined that it was accidental. But a DCF case worker, Beverly Bosse, filed a report citing the father for abuse and neglect. As a result, he was ordered to undergo anger management counseling.
Another social worker, Christina Wagner-Morella, was responsible for making sure he complied. Wagner-Morella eventually sought state custody of Lindsey based on the collarbone injury, though there was no concern for her safety expressed in routine court appearances.
In a sworn affidavit, Wagner-Morella said the father had a "history of beating his children" when he lived in Massachusetts.
and said a DCF child abuse expert had found the injury was consistent with the father throwing the child into a wall.
The affidavit omitted the police findings and the statement from the girl's pediatrician. The child abuse expert, Dr. Frederick Berrien, later testified that he had only reviewed her medical reports, and found the injury appeared to be an accident.
It was also discovered later that there was only one allegation of abuse against the father, an unsupported allegation by his ex-wife. The "history" in Massachusetts was isolated to a time he left his children alone while drinking. He had told DCF officials he had been sober for eight years.
Wagner-Morella said she unintentionally omitted the police report, and didn't know why she failed to mention the doctor's statement. She also said that she only had three hours to complete the report.
A phone number for Wagner-Morella could not be located. The Courant said it could not reach her for comment.
*** "The social worker's protestations of ignorance lack credibility," *** Lopez wrote. "There is no other purpose for this affidavit other than to mislead the court into believing that Lindsey was in immediate physical danger from her surroundings and only her immediate physical removal ... would ensure her safety."
Child welfare advocates and legal observers said the case calls attention to the need to open the state's juvenile courts to the public to keep DCF accountable. Legislation to open the courts was proposed last session, but did not pass.
*** "This case is only the tip of the iceberg," Paul Chill, associate dean of academic affairs at the University of Connecticut School of Law, told The Courant. "Virtually every lawyer who regularly practices in juvenile court will tell you that they have seen much worse." ***
Michael Ross' case already had made a mockery of Connecticut's death penalty. Then the farce got worse when yet another round of psychiatric evaluations was ordered.
Four shrinks weighed in. Two - a court-appointed doctor and one hired by Ross' attorney, T. R. Paulding - found Ross competent. The other two, hired by court-appointed counsel Thomas Groark, found him incompetent.
Superior Court Judge Patrick J. Clifford last week deemed Ross competent, clearing the way - yeah, right - to Ross' scheduled execution on May 11.
So, not only is the validity of Connecticut's death penalty, dormant for 45 years, still in doubt, but so, too, is the credibility of the science of psychiatry.
We've become immune to seeing "expert" witnesses hired by the prosecution and defense come down on the side of the folks who are paying them handsomely.
A bridge collapses, and we can expect engineers to have disparate views on its soundness prior to implosion. A patient is injured in a car crash and sues, and it's not unusual to hear conflicting medical opinions on whether there was a pre-existing medical condition. Or a patient lies in a vegetative state in a hospital bed for years and there are differing opinions on whether this person is still "alive."
Is it too much to ask for less divergent interpretations when ruling on a man's competence or sanity? After all, it's only his life that hangs in the balance here.
"If there were four people involved looking at something like a broken bone, nobody would give it a second thought that there were four different opinions" on how best to mend it, said psychiatrist Allan Jacobs of West Hartford. "And there might be a lot of common ground between the four people, but their conclusions could be different. So, I don't think it's as simplistic as saying psychiatry is just hocus-pocus. There's much more emotional stuff involved, especially in this particular case. And people are going to look at it much more critically."
Dr. Harold Schwartz, psychiatrist-in-chief at Hartford Hospital's Institute of Living, and Dr. Richard Shulman, a West Hartford psychologist, both thought psychiatry was misused, at times, in the Ross case.
Schwartz believes that "death row syndrome" - in which inmates on death row are believed to have suffered such debilitating mental impairment as to cloud their judgment - is a flavor-of-the month type of diagnosis. It has not gone through the rigor of peer reviews or extensive enough research to actually define it with clinical accuracy, Schwartz said.
"I find the assertion of this use [of death row syndrome] to be suggestive of an expert who is motivated to achieve a particular goal rather than evaluating the case purely on its psychiatric merits," said Schwartz, who has been paid to give court testimony in other cases. "I find the creation of a wholly new diagnosis like death row syndrome invalidated and created on the basis of no significant research."
The latest psychiatric evaluations of Ross were more rooted in his motivations, rather than his mental capacity. Both Schwartz and Shulman said the diagnosis of acute narcissism pinned on Ross should have nothing to do with his competency and his decision to choose death over more appeals.
"One thing that this should underscore to the public is that although psychiatrists are being brought in as medical experts, it's clear they're not dealing in the medical realm," Shulman said, adding that neurologists could have been called in to give evidence on Ross' brain.
There's only one way to describe the roller coaster that the Ross case has us riding. After his 18 years in prison, we've seen a deranged man insisting that he's competent and wants to die, attorneys with competing positions on his death sentence representing Ross, an eleventh-hour delay of execution caused by Ross' attorney and conflicting psychiatric evaluations.
This is crazy.
Stan Simpson's column appears Wednesdays and Saturdays. He can be reached at ssimpson@courant.com.
