Lyme in Nova Scotia

Lyme Disease should be considered if you have 20 or more symptoms

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Spirochetes on the Brain
by Dr. Robert C. Bransfield

To know Lyme disease is to know medicine, neurology, psychiatry, ecology, law, politics, and ethics. Clearly this disease is too complex for any one individual to possess such a broad range of expertise.

My perspective is that of a psychiatrist in private practice in a Lyme endemic area. For many years, I noticed a significant number of Lyme disease patients complaining of sleep disorders, depression, and a number of other central nervous system (CNS) complaints. Whenever the sleep disorder and other psychiatric symptoms were effectively treated, often there was an improvement in the Lyme disease symptoms. With time, I began to better appreciate the wide range of cognitive, psychiatric, neurological, and somatic symptoms that were a part of Lyme disease.

One such patient led to my greater involvement with Lyme disease. She had been previously diagnosed with the disease, and was treated with the usual protocol that was considered curative. Following her for several years, I found her mental status to follow a malignant downhill course, in spite of every psychotherapeutic treatment possible. Apart from the headaches, joint pain, cognitive impairments, etc., it was the mood swings, homicidal, and suicidal tendencies that were the most threatening symptoms. An extended period of IV antibiotics were clearly lifesaving, and she significantly improved. This case was subsequently published with Dr. Fallon in Psychosomatics. Over time, I have seen hundreds of Lyme disease patients with a broad range of symptoms effecting CNS functioning.

After seeing how Lyme disease causes psychiatric, cognitive, and other neurological symptoms, it certainly raises the question - How much CNS disease is caused in some way by infectious disease? Borrelia burgdorferi (Bb) is a major, but not the only causative agent. The greater issue is whether an active infectious process exists, the second issue is which infectious agent(s)? Very consistently, most of these neuropsychiatric patients show CNS herxheimer reactions followed by improvement in response to antibiotic treatments.

Let’s step away from clinical observation, and instead look at disease from a more abstract view. Darwinian medicine looks at causes of disease from an evolutionary perspective. One view is that microbes evolve faster than humans, and as a result infectious disease will always exist. What is the greatest predator of man? Lions, tigers, bears, white sharks, serial killers? No, microbes. When we consider how effective evolution has been, why is there so much disease? The National Comorbidity Study shows 48% of the population suffers from a mental disorder at some point in their lives. Why is there so much mental illness? Most disease is a result of a unique combination of a vulnerability and an environmental circumstance. One theory is that we are genetically adapted to stone age life, but are living in a very different environment. Such a view has complex implications, and can readily explain problems such as fear of flying. However, some other mental illness appears to be a failure of regulatory systems as a result of some type of neural injury, and dysfunction from infectious disease.

Currently there is a considerable recognition and research in the role of infectious disease in some of the common mental disorders. In addition to Bb, other infectious diseases such as strep, syphilis, AIDS, toxoplasmosis, and other infectious agents are recognized to cause psychiatric illness. The tentative conclusion of this research is - infectious disease causes a significant amount of mental illness. There are several mechanisms by which neural dysfunction can occur from Bb - cerebral vasculitis, Bb attachment and penetration into nerve cells, excitotoxicity, incorporation of Bb DNA into host cell DNA causing auto immune disease, etc.

When infectious disease causes neural dysfunction, it is relatively easy to see the causal relationship associated with injury to the peripheral nervous system, autonomic nervous system, endocrine system, and the gray matter of the cerebral cortex. Brain stem/mid brain injury results in dysfunction of vegetative modulation systems. Cerebral cortex white matter and sub cortical dysfunction is associated with specific processing impairments. However, dysfunction of the limbic and para limbic systems is the most challenging to understand.

To look at the basic structure of the limbic system, it is an emotional modulation center. Injury can result in a failure of an ability to evoke or inhibit an emotional function. The end result can be disorders such as depression, panic, OCD, mania, hallucinations, apathy, etc.

The cognitive and processing dysfunction is much easier to correlate with anatomy and physiology. For example, prefrontal cortex dysfunction correlates with executive function and attention span deficits, and can be demonstrated on SPECT and PET. Some deficits are correlated with very specific areas of the brain, while other dysfunction, such as violence, can correlate with injury in many different areas.

Any standard of diagnosis for late stage, chronic Lyme disease must incorporate the fact that it is a very complex disease with not only CNS, but also many other different presentations in its later stages. Therefore, the diagnosis of chronic Lyme disease is considered by personally performing a thorough and relevant history and examination, ordering and/or reviewing relevant laboratory tests in the proper context, and exercising sound clinical judgment by a licensed physician who is knowledgeable and experienced about chronic Lyme disease and is held accountable for his decisions.

In summary, Lyme disease is a very exciting area of investigation. Infectious disease can cause mental illness by way of a number of mechanisms. Psychotherapeutic interventions can help in

the treatment of infectious disease, and antibiotic treatments can help in the treatment of psychiatric, cognitive and neurological disease. With such potential to better help our patients, why is there such resistance to these ideas? Why is there such resistance to the concept of chronic, persistent infection?

Most disagreement is a lack of awareness, and an honest difference of opinion when approaching a very complex issue, but bias factors may retard progress as well. Of course, most bias is rooted in issues of money and power. Who feels they would lose from these insights? Not the health care consumer, who could benefit from a more knowledgeable treatment approach. The insurance and managed care industry that has denied thousands of requests for treatment? Doctors who have made substantial income from these companies to negate the validity of this disease? Individuals who want research money diverted elsewhere? Bureaucrats who have been slow to respond? Real estate developers on endemic area? Tourism interests? Who else? Has the combined effort of these groups intimidated some doctors into not giving Lyme disease proper attention? Our best clinical judgment should never defer to any bias factor.

Clearly we can overcome the usual resistance to progress with the usual approaches - education, research, legislation, litigation, and regulation. A major problem, however, is we have lost precious time, and the havoc of this disease is increasing. We need more research into the effective management of patients with severe chronic disease. The National Institute of Mental Health needs to be more actively involved in research into the effects of Lyme disease on the brain. Since this is such a complex disease, the greatest challenge is the ability of individuals from very different disciplines to work together effectively in a unified direction.

Ticks

Deer ticks have a two-year life cycle. That is, it takes two years for one egg-adult-egg generation to evolve. Therefore, deer ticks can be found all year long, including wintertime.

A tick bite is required to transmit the disease because the bacterium is injected into the skin via tick saliva as the tick sucks blood. The infection is therefore not transmitted from pet to pet nor from pet to owner only via an infected tick bite, and not all ticks are infected with Borrelia. If the tick is not removed properly you may force the infection into your skin.

Added by Heather Rolfe-Reid Nova Scotia
to the group "Lyme Awarness"

This is a picture of me at my worst, when I had Lyme Disease, the Final Stage. I was about a month away from death, last year. I was paralyzed, having seizures, could not tolerate any light around me, (the power button on the tv was too bright for me), lived in darkness, was in a wheelchair, was incoherent, in EXTREME pain 24/7, had total loss of bowel control (Bell’s Palsy of the Gut), could not read, could not speak a full sentence at times....could not get the words out of my head, became manic, diagnosed with fibromyalgia, MS, chronic pain, physiological problems (it was all in my head), called a drug addict (never touched drugs in my life) and suffered extreme muscular atrophy to the bone in 90% of my body or more, etc.

When I would go to ER’s or doctor’s offices they all said I looked a “little pale...and a bit thin,” other than that, there was nothing wrong with me. The common every day person could tell I was dying, but the doctors could not.
I even had the typical and textbook bullseye rash, as shown in the pictures. (Yes that is my rash) Unfortunately the doctors for infectious disease and control believed there was no lyme here and refused to see this perfect rash. I had to go to BC and use tests in California to get diagnosed.
They would not even take a biopsy of the rash!!!! In order to take a biopsy that means you would have to look at it....they never saw it....refused to see it, so therefore it does not exist (to them).
If I had been treated immediately....I would never have ended up like the pictures you see. I am still in recovery, from the damage....but I am recovering.

This is me today....

Lyme disease, IDSA guidelines thrown out!!‏

Connecticut Attorney General's Office

Press Release

Attorney General's Investigation Reveals Flawed Lyme Disease Guideline Process, IDSA Agrees To Reassess Guidelines, Install Independent Arbiter

May 1, 2008

Finally, evidence of what we have been reporting for many years...the Infectious Disease Society of America guidelines were corrupt and have been withdrawn!!

Here is the press release by the Attorney General of Connecticut today as per the California Lyme Disease Foundation website...I'm also attaching the actual press release,

Patients' rights groups today hailed Connecticut Attorney General Blumenthal's announcement of a settlement in a landmark antitrust investigation into the Lyme treatment guidelines of the Infectious Diseases Society of America (IDSA).

"My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists," said Blumenthal. "The IDSA's guideline panel improperly ignored, or minimized, consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science."

The groundbreaking settlement announced today forces a complete review of the IDSA guidelines by a new panel free from conflicts of interest, specifically excluding previous panel members. This panel will consider a range of scientific evidence in a public forum broadcast live over the internet and will be overseen by a specialist in financial conflicts of interest in medicine.

"This settlement makes it clear that the IDSA guideline development process was corrupted by a commercially driven panel that excluded evidence supporting longer term treatment of Lyme disease," said attorney Lorraine Johnson, Executive Director of the California Lyme Disease Association (CALDA). "This settlement allows suppressed scientific viewpoints and evidence to be heard, and it is promising news for patients."

This is the first-ever antitrust investigation against a medical society's guidelines development process.

"We congratulate Attorney General Blumenthal for exposing the IDSA's conflicts of interest and helping reduce the suffering of Lyme patients everywhere," said Pat Smith, president of the national Lyme Disease Association (LDA). Diane Blanchard, co-president of Time for Lyme in Connecticut agrees. "The IDSA guidelines are dangerous for patients who suffer longer-term Lyme symptoms that do not fall within the IDSA's narrow disease definition," Ms. Blanchard added.

The IDSA guidelines are treated as mandatory within the medical community. More than 50 physicians who use longer-term treatment approaches have been investigated or sanctioned by state medical boards. The guidelines can also result in financial problems for patients, since insurance companies refuse to reimburse for longer-term treatment and pharmacies may refuse to fill prescriptions.

The majority of individuals involved in the IDSA guidelines development process held direct or indirect commercial interests related to Lyme vaccines, patents, and/or test kits, and did not take the opinions or experiences of the competing Lyme groups into account.

While the announcement of a settlement comes as a huge relief to suffering Lyme patients, the case has much broader implications for a health care system that often contends with conflicts-of-interest in guideline processes - guidelines which are often used by insurance companies to limit diagnosis and treatment options.

"Today's settlement marks an important victory for all patients who suffer Lyme disease, but it is also a victory for anyone concerned about health care," said Johnson. "Commercially driven guidelines that limit patient treatment options are a major issue today in healthcare, and this decision marks an important step towards addressing it."

To view the entire IDSA agreement, go to the Attorney General's website.

http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284

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