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Love and Lyme
Her Psychiatrist Connected The Dots !

Dr. Bransfield tells NY senators the realities of psychiatric Lyme disease


Psychiatrist Robert Bransfield, MD, a former president of ILADS, addressed last week’s New York State Senate hearing on Lyme disease via remote video link. He discussed the many psychiatric impairments that can arise from tick-borne illnesses.

If you’ve tried watching the YouTube video of the five-hour hearing, you will have noticed that there were audio problems with Dr. Bransfield’s presentation. Here is the text of his prepared remarks.

 

Who are the authorities in Lyme disease?

There is no authority in science. Instead it is the nature of science to question everything. If there is an authority in science it is evidence and judgment. If there is an authority in medicine it is the evidence based medicine which is a synthesis of the best evidence available, physician judgment and patient preferences. Lyme disease opinions of CDC and NIH employees should never be viewed as authority.

Who are the experts?

Bench scientists who never treat patients? Bureaucrats? Patients? Patient advocacy groups? Doctors who practice within a narrow specialty in medicine? Physicians who have the long-term responsibility to treat Lyme patients? Many of us are experts in limited areas, but none of us are complete experts. The disease is far too complicated. We can only make progress with a collaborative effort.

How do we define Lyme disease?

There is a narrow and a broad definition of Lyme disease. The narrow and restrictive definition is basically the CDC surveillance criteria emphasizes the two-tier testing and focuses upon the early clinical symptoms described in the 1970s. The broader definition recognizes the significance of a broad spectrum of clinical symptoms, persistent infection, tick-borne and opportunistic coinfections causing a complex interactive infection and recognizes the limitations of the poorly standardized immune based two-tier testing for a pathogen that suppresses and evades the immune system.

The restrictive and narrow definition makes life easy for epidemiologists, insurance companies, researchers trying to acquire FDA approval for Lyme disease vaccines or test kits and individuals who are black and white thinkers and unable to process complexity. However, the restrictive definition does not make life easier for the disabled Lyme patient or physicians who are committed to helping them. The broader definition has more scientific validity and is supported by an overwhelming amount of evidence.

What are the most significant symptoms?

Like syphilis, symptoms are first dermatological, then arthritic and then neuropsychiatric. A problem is that many who view themselves as authorities and propagate dogmatic belief systems on Lyme disease have no training or expertise in psychiatry and fail to understand the disease progression.

As a psychiatrist who has treated thousands of Lyme patients over the past 30 years, including many for New York, it is clear that inadequately diagnosed and treated Lyme disease commonly results in neuropsychiatric symptoms causing suffering, disability and death in children and young people for decades. Psychiatrists are involved with Lyme disease in three ways— first, complex poorly understood diseases are often called psychosomatic and referred to psychiatrists until the cause of their condition is better understood; second, the greatest cause of illness, disability and death are the multiple neuropsychiatric symptoms and third, patients are distressed by their symptoms and skepticism from doctors, insurers, family and friends against Lyme disease and need assistance dealing with this.

Psychiatric impairments caused by Lyme includes autism, other developmental disabilities, attention span impairments, hypersensitivity to sound and other stimulation, memory impairments, dyslexia symptoms, slow mental processing, impaired concentration, sleep disorders, low frustration tolerance, irritability, temper outbursts, depression, anxiety disorders, mood swings, psychosis, and many other psychiatric symptoms. Persistent infection causes immune reactions resulting in these symptoms.

The major cause of death from Lyme disease is suicide. Other psychiatric causes of death include homicides and opioid overdoses. Based upon epidemiological calculation, there are at least 1200 suicides in the US and 140 in New York State per year from Lyme and associated diseases.

Other causes of death from Lyme disease include congenital Lyme infections, Lyme meningitis, Lyme nephritis, Lyme hepatitis, Lyme aortic aneurysm, Coronary artery aneurysm, Late Lyme endocarditis, Lyme carditis, Symptomatic Late Lyme neuroborreliosis, Late Lyme neuritis or neuropathy, Meningovascular and Neuroborreliosis with cerebral infarcts, Intracranial aneurysm, Late Lyme encephalitis, Late Lyme meningo-encephalitis or meningomyelo encephalitis, Atrophic form of Lyme meningo- encephalitis with dementia & subacute presenile dementia, Late Lyme disease of liver and other viscera, Late Lyme disease of kidney & ureter and Late Lyme disease of Bronchus & lung. (Global Network on Institutional Discrimination and Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes. 2017)

I would like to see a show of hands of those in the room who know someone who was disabled from Lyme disease. How many know someone with Lyme disease who committed suicide?

How do we diagnose it?

As with any medical condition, a diagnosis is made by a clinical comprehensive assessment with clinical judgment and pattern recognition by an experienced clinician. Why should Lyme be an exception? We cannot put reliance in the outdated restrictive diagnostic criteria. At the 2009 hearings for the highly controversial 2006 IDSA guidelines, research regarding many late stage symptoms were described that challenged the validity of the guidelines. However, any medical finding that did not fit with their belief system was dismissed as “subjective and non-specific” or called “medically unexplained” symptoms. This is not science! The American Psychiatric Association took a strong stand against the misuse and abuse of the phrase “medically unexplained symptoms” in the DSM-5 and recognizes Lyme disease in their Practice Guidelines for the Psychiatric Evaluation of Adults (2016).

How do we treat it?

We first need to recognize this is a very complex disease and a complex and highly individualized treatment approach is needed. The combination of antibiotics and treatment of the symptoms that impede recovery and cause disease progression is most effective. I have seen too many catastrophes when patients were treated with one dose of doxycycline, or an insufficient course of antibiotics.

How can we reconcile the Lyme disease controversy?

Since this is a complex disease, input from many perspectives are needed to develop a viable scientific model for this challenging disease. Some of you have been watching the ContagionLive Lyme disease debate on the Internet in which there is an effort to reconcile opposing views. Forums such as that and the meeting today will help us to achieve greater consensus. http://www.contagionlive.com/

What can those of us here today do to help with this epidemic?

New York State needs to allow reliable tick-borne disease testing that is allowed in every other state. If any test should not be allowed, it is the two-tier testing with the Dearborn criteria. Unfortunately, too many doctors see the two-tier testing as a valid screen for Lyme and other tick-borne diseases and fail to do an adequate clinical assessment. A warning should be required on the two-tier testing that emphasizes the limitations of its diagnostic value. Four other states have such a warning.

Psychiatrists need to be involved in developing policies regarding Lyme disease. There are several highly competent psychiatrists in New York State who are knowledgeable about Lyme disease. Infectious disease specialists and public health employees have insufficient training in psychiatry and often inadequate training in the psychiatric manifestations of Lyme disease and other tick-borne diseases.

Safeguards need to be developed to prevent the OPMC from being used as a covert weapon against physicians who recognize the significance of Lyme disease and treat their patients accordingly. I testified about this at the hearing in 2001 and it is still a problem today.

It is advisable that continuing medical education credits for well-balanced educational programs on Lyme and associated tick-borne diseases be required for physician licensing renewal and these programs should include information on the limitations of current testing and late stage manifestations, including psychiatric manifestations. All physicians need to do their fair share to help with this epidemic.

In summary, Lyme and associated tick-borne diseases cause a large burden of avoidable chronic psychiatric and somatic illness resulting in considerable suffering, impairment and disability. A group of individuals have been motivated to spread misinformation regarding Lyme disease. Coordinated efforts will disseminate accurate information and greatly improve mental and physical health.

Thank you for inviting me to testify and attached are a list of journal articles demonstrating the association between Lyme and associated diseases and psychiatric symptoms and I also included my most recent journal article on suicide and Lyme and associated diseases, a summary of autism and Lyme disease and an article discussing how tick-borne infections impact the immune system and cause psychiatric symptoms. I made this presentation concise to allow for any possible questions.

Click here for more coverage of the hearing.

 

 

 
Misdiagnosis Leads to Heart Transplant

Basic Information about Lyme Disease

By The International Lyme and Associated Diseases Society

  1. Lyme disease is transmitted by the bite of a tick, and the disease is prevalent across the United States and throughout the world. Ticks know no borders and respect no boundaries. A patient's county of residence does not accurately reflect his or her Lyme disease risk because people travel, pets travel, and ticks travel. This creates a dynamic situation with many opportunities for exposure to Lyme disease for each individual.

  2. Lyme disease is a clinical diagnosis. The disease is caused by a spiral-shaped bacteria (spirochete) called Borrelia Burgdorferi. The Lyme spirochete can cause infection of multiple organs and produce a wide range of symptoms. Case reports in the medical literature document the protean manifestations of Lyme disease, and familiarity with its varied presentations is key to recognizing disseminated disease.

  3. Fewer than 50% of patients with Lyme disease recall a tick bite. In some studies this number is as low as 15% in culture-proven infection with the Lyme spirochete.

  4. Fewer than 50% of patients with Lyme disease recall any rash. Although the erythema migrans (EM) or “bull’s-eye” rash is considered classic, it is not the most common dermatologic manifestation of early-localized Lyme infection. Atypical forms of this rash are seen far more commonly. It is important to know that the EM rash is pathognomonic of Lyme disease and requires no further verification prior to starting an appropriate course of antibiotic therapy.

  5. The Centers For Disease Control And Prevention (CDC) surveillance criteria for Lyme disease were devised to track a narrow band of cases for epidemiologic purposes. As stated on the CDC website, the surveillance criteria were never intended to be used as diagnostic criteria, nor were they meant to define the entire scope of Lyme disease.

  6. The elisa screening test is unreliable. The test misses 35% of culture proven Lyme disease (only 65% sensitivity) and is unacceptable as the first step of a two-step screening protocol. By definition, a screening test should have at least 95% sensitivity.

  7. Of patients with acute culture-proven Lyme disease, 20–30% remain seronegative on serial western blot sampling. Antibody titers also appear to decline over time; thus while the western blot may remain positive for months, it may not always be sensitive enough to detect chronic infection with the Lyme spirochete. For “epidemiological purposes” the CDC eliminated from the western blot analysis the reading of bands 31 and 34. These bands are so specific to Borrelia Burgdorferi that they were chosen for vaccine development. Since a vaccine for Lyme disease is currently unavailable, however, a positive 31 or 34 band is highly indicative of Borrelia Burgdorferi exposure. Yet these bands are not reported in commercial Lyme tests.

  8. When used as part of a diagnostic evaluation for Lyme disease, the western blot should be performed by a laboratory that reads and reports all of the bands related to Borrelia Burgdorferi. Laboratories that use FDA approved kits (for instance, the mardx marblot®) are restricted from reporting all of the bands, as they must abide by the rules of the manufacturer. These rules are set up in accordance with the CDC's surveillance criteria and increase the risk of false-negative results. The commercial kits may be useful for surveillance purposes, but they offer too little information to be useful in patient management.

  9. There are 5 subspecies of Borrelia Burgdorferi, over 100 strains in the USA, and 300 strains worldwide. This diversity is thought to contribute to the antigenic variability of the spirochete and its ability to evade the immune system and antibiotic therapy, leading to chronic infection.

  10. Testing for Babesia, Anaplasma, Ehrlichia and Bartonella (other tick-transmitted organisms) should be performed. The presence of co-infection with these organisms points to probable infection with the Lyme spirochete as well. If these coinfections are left untreated, their continued presence increases morbidity and prevents successful treatment of Lyme disease.

  11. A preponderance of evidence indicates that active ongoing spirochetal infection with or without other tick-borne coinfections is the cause of the persistent symptoms in chronic Lyme disease.

  12. There has never been a study demonstrating that 30 days of antibiotic treatment cures chronic Lyme disease. However there is a plethora of documentation in the us and european medical literature demonstrating by histology and culture techniques that short courses of antibiotic treatment fail to eradicate the Lyme spirochete. Short treatment courses have resulted in upwards of a 40% relapse rate, especially if treatment is delayed.

  13. Most cases of chronic Lyme disease require an extended course of antibiotic therapy to achieve symptomatic relief. The return of symptoms and evidence of the continued presence of Borrelia Burgdorferi indicates the need for further treatment. The very real consequences of untreated chronic persistent Lyme infection far outweigh the potential consequences of long-term antibiotic therapy.

  14. Many patients with chronic Lyme disease require prolonged treatment until the patient is symptom-free. Relapses occur and retreatment may be required. There are no tests currently available to provethat the organism is eradicated or that the patient with chronic Lyme disease is cured.

  15. Like Syphilis in the 19th century, Lyme disease has been called the great imitator and should be considered in the differential diagnosis of rheumatologic and neurologic conditions, as well as Chronic Fatigue Syndrome, Fibromyalgia, Somatization Disorder and any difficult-to-diagnose multi-system illness.

Disclaimer: The foregoing information is for educational purposes only. It is not intended to replace or supersede patient care by a healthcare provider. If an individual suspects the presence of a tick-borne illness, that individual should consult a healthcare provider who is familiar with the diagnosis and treatment of tick-borne diseases.
FASTEST GROWING
ACCORDING TO THE CDC, LYME DISEASE IS THE FASTEST GROWING VECTOR-BORNE, INFECTIOUS DISEASE IN THE UNITED STATES.
25x
THE NUMBER OF CASES REPORTED ANNUALLY HAS INCREASED NEARLY 25-FOLD SINCE NATIONAL SURVEILLANCE BEGAN IN 1982.
300
THERE ARE 5 SUBSPECIES OF BORRELIA BURGDORFERI, OVER 100 STRAINS IN THE US, AND 300 STRAINS WORLDWIDE
This diversity is thought to contribute to its ability to evade the immune system and antibiotic therapy, leading to chronic infection
300,000
CDC reports: Lyme disease infects 300,000 people a year. 10 times more Americans than previously reported.
This new preliminary estimate confirms that Lyme disease is a tremendous public health problem in the United States,” says Dr. Paul Mead, chief of epidemiology and surveillance for CDC’s Lyme disease program.
NEW LYME DISEASE CASES IN US
CASES PER MONTH
25,000
CDC ESTIMATE
CASES PER WEEK
5,770
CDC ESTIMATE
CASES PER DAY
822
CDC ESTIMATE
CASES PER HOUR
34
CDC ESTIMATE
NO ACCURATE TESTS
THERE ARE NO TESTS AVAILABLE TO PROVE THAT THE ORGANISM IS ERADICATED OR THAT THE PATIENT IS CURED.
50%
FEWER THAN 50% OF PATIENTS WITH LYME DISEASE RECALL A TICK BITE.
50%
FEWER THAN 50% OF PATIENTS WITH LYME DISEASE RECALL ANY RASH.
35%
THE ELISA SCREENING TEST IS UNRELIABLE.
The common Elisa test you receive at your doctor's office misses 35% of culture proven Lyme disease. Some studies indicate up to 50% of the patients tested for Lyme disease receive false negative results.
50%
UP TO FIFTY PERCENT OF TICKS IN LYME-ENDEMIC AREAS ARE INFECTED.
The onset of Lyme disease symptoms can be easily mistaken for other illnesses. Once symptoms are more evident the disease may have already entered the central nervous system, and could be hard to cure.
40%
40% OF LYME PATIENTS END UP WITH LONG TERM HEALTH PROBLEMS.
The average patient sees 5 doctors over nearly 2 years before being diagnosed.
40%
SHORT TREATMENT COURSES HAVE RESULTED IN UPWARDS OF A 40% RELAPSE RATE, ESPECIALLY IF TREATMENT IS DELAYED.
There has never been a study demonstrating that 30 days of antibiotic treatment cures chronic Lyme disease. However there is much documentation demonstrating that short courses of antibiotic treatment fail to eradicate the Lyme spirochete.