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May is Lyme Disease Awareness Month. With the focus by the Obama Administration on health care in America and my many responses that propping up the current system makes little sense if we are just making the flaws a lot bigger, I thought my current predicament might give you some first hand insight into the problems we face in health care.

Recently I was diagnosed as having the symptoms of Lyme disease. It was not unexpected as I live in Southern Maryland along the Potomac River just above the Chesapeake Bay where it is hot, humid, and ideal conditions for the disease.

Adding to the problem is the fact we have had an extremely wet past year in an area that already gets more than enough rain per year. Compound that with a short winter with record snow and cold and a very warm spring and all the animal and plant life is totally out of sync with normal patterns.

By early April the first ticks appeared and by may the poison ivy and poison sumac had become far more virulent than any year since I moved here. However, ticks have always been a huge problem and if you have dogs you will have ticks. No flea or tick treatment I found kept them off the animals the past three years.

So it was just a matter of time that the right tick would be on me, especially the tiny deer tick known to transmit the disease. However, I was not unprepared as I first encountered the disease when I lived in New Jersey and worked in New York City of all places. Lyme disease was first discovered in Lyme, Connecticut 1975, suspected of being transmitted by ticks in 1978, but remained a mystery until confirmed in 1982.

In 1992 my boss, who had a house in rural Connecticut got the disease. he underwent massive treatment with antibiotics and it was not until almost a year later that he no longer showed signs of the disease. yet another friend in New Jersey contracted the disease while jogging through the beautiful countryside about the same year and she was nearly bedridden for a year before recovering.

That got my attention. This disease had no limits, it could strike the rich or poor, the healthy and office bound, and in most cases you could not even see the tiny ticks infecting you. It is an infectious disease and in the years since has spread like wildfire through humans. However, the medical authorities have always been way behind the times in diagnosing and treating this disease.

In addition to ticks, it has been learned that Borrelia, the bacteria in Lyme disease, may be carried and transmitted by fleas, mosquitoes and mites. Also it is not exclusively vector-borne. Humans have been known to pass the disease through breast-feeding and blood transfusions. Also the possibility exists that Lyme disease can be food infection.

With the help of two informative web sites with much more current research on the Lyme disease, healthynewage.com and lymephotos.com, I have been able to provide you with a far more accurate picture of the disease and what it means to you.

Lyme disease, or lyme borreliosis, is an emerging infectious disease caused by at least three species of bacteria belonging to the genus Borrelia. Borrelia burgdorferi sensu lato is the main cause of Lyme disease in the United States, whereas Borrelia afzelii and Borrelia garinii cause most European cases.

Lyme disease is the most common tick-borne disease in the Northern Hemisphere. Borrelia is transmitted to humans by the bite of infected ticks belonging to a few species of the genus Ixodes (“hard ticks”). Early symptoms may include fever, headache, fatigue, depression, and a characteristic circular skin rash called erythema. Left untreated, later symptoms may involve the joints, heart, and central nervous system. In most cases, it is thought the infection and its symptoms can be eliminated by antibiotics, especially if the illness is treated early.

There are over 100 strains of Borrelia burgdorferi in the United States, 300 strains worldwide and 5 subspecies of Borrelia burgdorferi. 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. Lyme disease bacteria has been reported for years in across Europe, Russia, Canada and throughout the world.

In the past late, delayed, or inadequate treatment was thought to lead to the more serious symptoms, which can be disabling and difficult to treat. Occasionally, symptoms such as arthritis persist after the infection has been eliminated by antibiotics, prompting suggestions that Borrelia causes autoimmunity.

Some groups have argued that “chronic” Lyme disease is responsible for a range of medically unexplained symptoms beyond the recognized symptoms of late Lyme disease, and that additional, long-term antibiotic treatments are needed. Other groups argue that antibiotics are the wrong form of treatment and can serve to mask the results temporarily but an even more dangerous parasite exists with the bacteria and the parasite can form a cocoon around the bacteria and preserve it through the antibiotic treatment.

As far as the antibiotic treatment, of four controlled trials of long-term ceftriaxone and doxycycline treatment in patients with ongoing symptoms, two found no benefit, and two found inconsistent benefits with significant side effects and risks from the antibiotic treatment.

Most expert groups, including the Infectious Diseases Society of America and the American Academy of Neurology, have found that existing scientific evidence does not support a role for Borrelia nor ongoing antibiotic treatment in such cases. However, the subject is controversial, with some doctors, patient advocacy groups, and politicians continuing to argue that long-term treatment is beneficial. This dispute has led to legal action over treatment guidelines, as well as harassment and death threats made against physicians who will not acknowledge “chronic” Lyme disease as a legitimate diagnosis.

Lyme Disease is far more complex than what the public has been told and the number of reported cases, though tripling every couple of years and spreading at a rate 7 times faster than that of AIDS, is officially estimated to reach 300,000 new cases this year alone. However, other evidence suggests this represents less than 10% of all cases.

What is clear is that Lyme disease is the fastest-growing epidemic in the world. The Center for Disease Control (CDC) in Atlanta, Ga., USA, affirms that “there is considerable underreporting” of Lyme disease, maintaining that the actual infection rate may be 1.8 million, 10 times higher than the 180,000 cases currently reported. Nick Harris, Ph.D., director of the International Lyme and associated Diseases Society (ILADS), states “Lyme is grossly under-reported. In the U.S., we probably have about 200,000 cases per year.”

Considering vector, congenital and sexual transfer, it is estimated that 15.5% of the global population, nearly 1 billion people, could now be infected with Borrelia. The Sierra Integrative Medicine Clinic in Reno, Nev. states that “Authorities estimate that up to 90 percent of the population could be carrying the Lyme spirochete and that Lyme is a factor in over 50 percent of chronic illnesses.”

Katrina Tang, MD, HMD, founder and director of research at the Sierra Integrative Medicine Clinic, states that Lyme disease eludes doctors because of its ability to mimic many other diseases. For example, according to an informal study conducted by the American Lyme Disease Alliance (ALDA), most patients diagnosed with Chronic Fatigue Syndrome (CFS) are actually suffering from Lyme disease. In a study of 31 patients diagnosed with CFS, 28 patients, or 90.3%, were found to be ill as a result of Lyme.

Paul Fink, MD, MS, past president of the American Psychiatric Association, has acknowledged that Lyme disease can contribute to every psychiatric disorder in the Diagnostic Symptoms Manual IV (DSM-IV). This manual is used to diagnose psychiatric conditions such as attention deficit disorder (ADD), antisocial personality, Anorexia Nervosa, Autism and Aspergers syndrome (a form of autism), to name a few.

Lyme Borreliosis causes, mimics, is manifested as, is misdiagnosed as, or is a contributing factor to more than 300 conditions, such as:
Acute coronary syndrome
Acute Meningitis
Acquired Immune Deficiency Syndrome (AIDS)
Alzheimer’s Disease
Bell’s Palsy
Bipolar Disorder
Brain Tumor
Brown recluse spider bite
Cardiac Disease
Coronary aneurysm
Depression
Epilepsy
Fetal death
Fibromyalgia
Hepatitis
Infectious Mononucleosis
Juvenile Rheumatoid Arthritis
Lymphoma
Multiple Sclerosis
Peripheral Facial Palsy
Rheumatoid Arthritis
Sudden Infant Death (SIDS)
Tourette’s Syndrome
Vertigo

As you can see, even within the western medical practice there is widely disputed and conflicting information regarding the cause, composition, status, extent and treatment for this disease. New information, especially from foreign countries where response to medical issues is often dealt with much faster than in America with our institutionalized medicine, challenges are more pronounced.

In subsequent articles I will detail the effect the symptoms of the disease have had on me, my approach to treatment, and the results of treatment as I try to overcome the various manifestations of the disease I have experienced. It is hoped this experience and reporting on the progress will give you a better idea of what your alternatives are should you share the same fate and experience the devastating impact of the disease if you get caught in the pandemic.
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TORONTO, ONTARIO–(Marketwire – Nov. 24, 2010) –

Editor’s Note: there is an audio clip associated with this Press Release.

While many Canadians know about diseases like asthma, diabetes and cardiovascular disease, few know about a rare, but potentially fatal lung disease – pulmonary hypertension (PH). According to a recent national survey, seven-in-ten Canadians are unaware that PH is a rare incurable lung disease, which results in high blood pressure in the lungs. 

Affecting up to 10,000 Canadians,(1) PH has a very low profile, even among medical professionals, and as a result, is often misdiagnosed or confused with a host of other illnesses. Early symptoms are subtle and include unexplained shortness of breath, fatigue, swelling of the feet and ankles, and fainting. 

“Early detection and prompt treatment can significantly improve patients’ symptoms, quality of life and long-term outcomes,” mentions Dr. Sanjay Mehta, Professor of Medicine and Director of the Southwest Ontario PH Clinic in London, Ontario, and Medical Director, PHA-Canada. ”November is Pulmonary Hypertension Awareness Month and our goal is to increase awareness and education for this invisible, incurable but treatable disease, so that we can offer patients the best outcomes possible as we continue to work towards a cure.”

According to the survey, only one-in-five Canadians correctly associated swollen ankles, legs or abdomen as symptoms of pulmonary hypertension. Furthermore, one-in-three incorrectly believe pulmonary hypertension to be high blood pressure that can be treated by taking heart medication. Patients with certain types of pulmonary arterial hypertension (PAH) – the most severe form of PH – only live on average for two to three years if left untreated.(2)

“Over a period of four years, I went to my doctor and specialists countless times, but no one could figure out what was wrong,” mentions Carol Doyle, who was diagnosed with pulmonary hypertension two years ago. ”When I was finally diagnosed, my PH had significantly progressed. Had I received a prompt diagnosis, I could have been on the treatments I needed right away and managed my disease better.”

Diagnosing Pulmonary Hypertension

Pulmonary Hypertension is considered by doctors to be a rare and elusive disease. the rarity of the disease and its common symptoms often lead to a delayed diagnosis. as symptoms are not unique to PH, even if the doctor suspects this disease, PH is often diagnosed after a long process of elimination. a confirmed diagnosis of PH requires a series of invasive tests to conclusively confirm the origin and cause of the elevated blood pressure in the lungs. Thus, both health care professionals and patients usually remain in the dark until the symptoms get worse. in fact, the average time from the onset of symptoms to an accurate diagnosis may be up to two to three years.(3)(4)

Treating Pulmonary Hypertension

Although there is no cure for PH, there are several treatment options available, and Canadians living with the disease can live longer and healthier lives. since 1997, seven treatments have been approved in Canada and thanks to these advancements, many patients are living longer and healthier lives.(5)

One such advancement is the Ontario Ministry of Health and Long-Term Care’s recent decision to revise existing Exceptional Access Program (EAP) criteria to include funding of combination therapy for people living with pulmonary arterial hypertension. 

“This decision is an important step for PH patients in this province. PHA Canada looks forward to continuing to work with governments across Canada to ensure that all PH patients have access to the best quality of care,” says Darren Bell, President, PHA Canada. 

Innovative new therapies that are under investigation in clinical trials may soon be available to patients. these include a new generation of oral and inhaled drugs that are easier to take and more convenient for patients.

If all else fails, transplantation of the lungs, or both the heart and lungs may be considered.

Community Connect: Online Resource Uniting Patients across Canada

Living with a rare disease, like pulmonary hypertension, can be very lonely. in a country like Canada where people are spread out and sometimes live in very remote areas, patients often feel isolated. Community Connect is an online resource available at phacanada.ca, reminding Canadians they are not alone; there is a strong community available to connect with virtually. it provides a single access point to resources and information available in Canada, enabling the PH community to connect and collaborate. 

About the Survey

This online survey of 1504 adult Canadians was conducted by Leger Marketing between October 18th and October 24th, 2010. This method simulates a probability sample which would yield a maximum margin of error of +/-2.5%, 19 times out of 20.

About PHA Canada

PHA Canada is a charitable organization that was established by patients, caregivers, parents and family members (collectively referred to as “Canadians living with PH” – the loved ones of those affected by PH also live with the disease) on the principles of ending isolation, providing education and creating a united Canadian PH community. we strive to work towards these goals every day by rallying the PH community from coast to coast, in every town, to come together and make sure that PH stops being the disease of which ‘no one has ever heard.’

The mission of PHA Canada is to work within a united pulmonary hypertension community and to provide leadership in awareness, advocacy, education and patient support on behalf of all Canadians living with PH.

(1) Pulmonary Hypertension Association of Canada, Toronto Chapter. phatoronto.ca/aboutph.html. Accessed October 28, 2009.

(2) livingwithph.ca/disease_16.htm

(3) Badesch, D.B. et al. Pulmonary Arterial Hypertension: Baseline Characteristics from the REVEAL Registry. CHEST 2010;137;376-387.

(4) Humbert, M. et al. Pulmonary Arterial Hypertension in France. Am J Respir Crit Care Med 2006. Vol 173;1023–1030.

(5) Pulmonary Hypertension Association of Canada, Toronto Chapter. phatoronto.ca/aboutph.html. Accessed October 28, 2009.

To view the audio clip included with this press release, please visit the following link: phacanada.ca/index.php/en/media/public-service-announcement/