Lyme is a political disease. It's mechanisms are relatively unknown yet and doctors here in Canada are ignorantly relying on inaccurate tests and following inadequate treatment guidelines. I have seen the devastation that having this disease in Canada causes - especially for people who do not have access to finances to receive out-of-province care.
We need to tread carefully when discussing the political nature of this disease as the very livelihood of some Lyme patients and the security of the licenses of doctors who dare to treat the disease with the necessary protocol are at stake. I have met someone with Lyme recently who has a family to feed and only has access to disability payments if he concedes to a diagnosis of depression and anxiety. Because insurance companies and their doctors are convinced that Lyme is a disease that is 'hard to get and easy to treat', this unfortunate man continues to suffer from Lyme without access to treatment. Although he has a positive blood test confirming that he suffers from Lyme, he has been told in no uncertain terms that he does not have Lyme and he must discontinue speaking of it's existence or seeking treatment for it. If he does indeed seek treatment for Lyme (even out-of-pocket treatment), the payments that are keeping his family clothed, housed and fed will discontinue. This man is in need of IV antibiotics to kill the Lyme bacteria, as oral antibiotics have so far been ineffective. Having to get treatment 'under the radar' means that he will not have access through his family doctor to CCAC nursing care for his picc line dressing changes, flushes and IV lines. As he needs the treatment, we have sought the help of local nurses to gather extra hospital supplies so that he can receive the treatment he needs to have a chance to possibly regain his health. I also have gathered extra supplies over the past year which will be passed on to him.
This is the kind of complications that many people suffering with Lyme Disease experience here in Canada. I am one of the fortunate ones. Being a woman, I am not the breadwinner of this family. Being part of a community of believers, I have access to funds for out-of-pocket treatment and home care for myself and my family. I am also able to speak openly about the affects of this disease, as I am not constrained by politics, nor am I relying on the whims of a health insurance company. With my health improving so much recently, God has now placed me in a position to appeal to the government to make changes to our healthcare system. I have limited energy and resources to make a difference, but I will continue to do what I can. I met with my local MPP recently to help him understand the complications that those of us with Lyme in Ontario face. Those of us who are physically and mentally able need to appeal to our local government and health ministry to make the necessary changes to allow for adequate treatment and fund new research before the Lyme epidemic expands further.
In this past month, I have been approached by three different people who suspect they may have Lyme and are wondering how to go about getting accurate testing and diagnosis. I will write a post about the steps to take if you think you may be infected at a later date....
Round Table Meeting with MPPs Tim Hudak and Toby Barrett - Take a bite out of Lyme Challenge
Below is the letter that I sent to the Minister of Health, as well as my local MPP. It will help you understand some of the issues that Lyme patients face and why we currently consider Lyme a political disease:
Dear Dr Eric Hoskins
Minister of Health and Long Term Care,
I am writing to you in regards to my personal experience with contracting Lyme disease and need for out-of-country medical care to treat it. I am hoping to give a voice to the many patients like me who have suffered as a result of a healthcare system that is ineffective in recognizing and treating late stage Lyme disease.
MY KNOWLEDGE OF LYME:
Prior to being diagnosed with Lyme disease I was vaguely aware of its existence. I was not aware of the symptoms to watch for, especially late stage symptoms. Although I had knowledge of how to remove a tick I was unaware of the risk of infection, the low percentage of people who actually notice a bull’s eye rash or the long-term disability that could result.
Formerly fit, healthy, athletic and energetic, I was active in the community and loved to challenge myself with team and extreme sports. At no point in my life do I remember having a tick bite or a bulls-eye rash. However, I loved the outdoors and spent a lot of time in nature, both in my native Australia and here in Canada. We also adopted a pet dog from a shelter and were not aware enough to check him for potential infection.
In June 2011, after giving birth to my son at the age of 27, my body collapsed physically and I became severely weak in my limb-girdle joints and muscles. To my horror I and was unable to weight bear through my hips. My body would simply drop me like a dead weight. I was sent home half a week later in a wheelchair, with minimal homecare support and a newborn son, 1 year-old daughter and 3 year-old son to somehow take care of.
My joint hypermobility increased and my muscles refused to respond to daily physiotherapy. The physiotherapist assigned to my home signed off after a few weeks as I was not making any physical progress….. No amount of determination could overcome the fatigue in my muscles and joints. It seemed the more I pushed, the quicker I fatigued. I would wheel around my home on an office chair, sit to shower and crawl across the carpet. With three very young children to take care of, I was given no governmental aide either financially or physically and relied on family/friends/church for the care my family and I needed.
For three years my family doctor sent me to various specialists. I saw a Physiatrist, 2 Rheumatologists, 3 Neurologists, Neuro-muscular specialist, Physiotherapists (out of pocket), Chiropractor (out of pocket), Naturopath (out of pocket), Bowen Therapist (out of pocket), Pain specialist, Cardiologist, Sleep specialist and Geneticist.
Tests done over these three years included: MRI’s – brain, spine, hips, Pelvic X-rays, EMG muscle stimulation, nerve conduction studies, muscle biopsy of thigh muscle, many sets of bloodwork, sleep study, vision testing, chest ultrasound.
SYMTOMS:
My symptoms included muscle weakness – particularly limb-girdle, severe fatigue, increased joint hypermobility, deep muscle and joint pain, muscle twitching, low stamina/endurance, swollen knees, severe insomnia, trouble concentrating, difficulty with thought processing, air hunger, chest heaviness, dizziness, night sweats, forgetfulness.
In desperation, during a particularly bad bout, we headed to Toronto General Hospital to see if I could gain access to resources and answers from the team of specialists there. Due to the severity of my symptoms I was admitted but after routine bloodwork failed to show anything, I was sent home and encouraged to ‘follow the advice of the physiotherapy team’.
I was suspected to have: Myasthenia Gravis, Fibromyalgia and Ehlers-Danlos Hypermobility Syndrome. Although my symptoms overlap these diseases, I never quite fit any of these fully so I am still technically undiagnosed in Canada.
In 2012 I saw a Canadian Naturopath who suspected that I was potentially suffering from Lyme disease. At that time I convinced my family doctor to do the standard ELISA test which is the initial screening test done in Canada. It came back negative. As I was unaware of the inaccuracy of the testing, both my family doctor and I were content that I could not have Lyme disease.
In May 2014, through reading a MacLean’s article on Lyme disease in Canada, I was made aware of many more of the symptoms of Lyme disease, many of which fit mine. The article also informed of the lack of sensitivity of the ELISA test and advised of testing in USA using the Western Blot method. Currently the Western Blot is the second test used in Canada and the ELISA is the initial screen test, so if an ELISA test is negative the Western Blot will not be ordered. As my symptoms fit so many of those with Lyme disease, I paid to have bloodwork sent to IGeneX lab in California. My western blot test came back positive for Lyme disease, although still not according to Canadian standards. The CDC and the IGeneX lab have different criteria for issuing a positive result. I was negative by CDC standards, positive according to IGeneX criteria. Even without bloodwork, Lyme disease is supposed to be a clinical diagnosis. Bloodwork may be helpful in diagnosis but Lyme disease is supposed to be based on a clinical diagnosis. Lyme is difficult to find in bloodwork because the body often does not mount an immune response as the spirochete are very adept at hiding in the immune system.
By this point I was struggling with severe air hunger and becoming increasingly weak. My family doctor had me scheduled to get a lung function test done next. We were still chasing symptoms…. She said she couldn’t read the results of my IGeneX lab work but was ‘pretty sure it was negative’. She admitted that I probably knew more about Lyme disease than she did but yet she was convinced that I did not have Lyme. In her opinion I was still suffering from some unknown, un-diagnosable, extremely rare condition….She said I could possibly see an infectious disease specialist but that it would take many months for that appointment also. By now we understood how the system in Canada worked. We did not have time to wait around as I was going downhill fast…
At this point we realized that our only hope of diagnosis and treatment was to seek out a Lyme literate specialist outside of Canada. My bloodwork, coupled with my symptoms bore testament to the fact that Lyme disease was the cause of my health issues. I was diagnosed with Lyme and clinically co-infections Bartonella and Babesia. By this time the disease was in a late stage and would require aggressive, long-term treatment to eradicate. I began IV and oral antibiotic treatment immediately in America, crossing the border and paying out-of pocket for the chance to return to life and living again.
The complication with having very few doctors who are daring enough to risk their medical licenses to treat Lyme Disease is that there is a market for doctors who wish to exploit patients with Lyme Disease. After a few months, with the bills piling up at a ridiculous rate, we realized that the doctor we were seeing (although knowledgeable of Lyme and co-infections) was charging us much far more than she should have for treatment. I was given a reputable referral to a new Lyme Literate Doctor (also in America) and have continued successful treatment with her since September 2014.
FINANCIAL BURDEN:
We have spent over $100,000 out of pocket on treatment for this disease over the past seven months. We receive financial aid from family, friends and our church community. Without their help this disease would have already devastated us financially. There are many people suffering from Lyme disease that cannot afford the treatment that I am so fortunate to receive. I have made great improvement and am able to walk again but am still currently undergoing aggressive treatment as I have a long way to go to become fully functioning again.
My family doctor did not support a Lyme disease diagnosis. She preferred to think of it as a psychological disorder because she had exhausted her resources and nothing had shown up in the testing I had done here in Canada. We have had to leave her care as she will not support me during my treatment for Lyme. Without her support I was not able to access weekly bloodwork that was needed during treatment, CCAC nursing care to take care of my picc line dressings or the intravenous equipment to administer my daily medications.
The Canadian Health Care System has failed us. We saw many taxpayer dollars wasted on unnecessary blood-work, expensive tests, doctor and specialist visits. We waited in hope for months between each specialist appointment, only to be disappointed when my symptoms did not fit the mold. We were certain that if all of the specialists put their heads together they would be able to figure out my apparently one-of-a-kind case. It is now apparent that my symptoms are actually very common for one suffering from Lyme disease. Since beginning treatment, I have been back to see some of the specialists that saw me at my physical worst. I have been laughed at and was told in no uncertain terms by my neurologist that the diagnosis of Lyme and treatment I am currently receiving is as ridiculous as it is harmful to my body. In her opinion the huge strides I have made in physical strength since then can apparently be attributed to the placebo effect.
AGGRESSIVE TREATMENT – A NECESSARY EVIL:
Although treatment is certainly no walk in the park and I am aware of the side-effects and damage that long-term antibiotics can do to my body, I am satisfied that this aggressive treatment is necessary to destroy the disease. I am balancing the destructive effects of treatment with supplements, probiotics and a strict diet to keep my body as healthy as possible. I am working hard to stay positive and focused during treatment.
The negative effects of treatment are outweighed by the abilities that I am regaining. I am hopeful that there will be a better cure for Lyme disease than aggressive antibiotics in the future. I am also hopeful that those of us who suffer with Lyme disease will be supported by the government and healthcare professionals here in Canada so that we are not forced to go to America for treatment.
I would like to see the following changes to our government and healthcare system in regards to lyme disease diagnosis and treatment:
· Shorter wait times for specialists. It took three years for me to find out that I didn’t have anything recognizable to Canadian doctors.
· Better communication between healthcare professionals – accurate information sharing would save time, money and frustration and get results in a timely manner.
· OHIP coverage for things like physiotherapy/naturopath/Lyme specialists. These costs should not be shouldered by the patient.
· Financial or physical assistance to take care of the dependents of those disabled and debilitated by lyme disease.
· Education for doctors and specialists who should be the first to pick up the signs of lyme disease in their patients – especially late stage symptoms.
· More scientific research to find an accurate diagnostic tool and possibly a cure for lyme disease.
· Stop threatening the careers of those who wish to diagnose and treat lyme disease. Give the doctors and patients the power to do whatever is necessary to treat a disease that is devastating in its effects on the lives of patients and their loved ones.
BETTER EDUCATION:
In my opinion, warning people to watch for flu-like symptoms and a bulls-eye rash is not enough. Bulls-eye rashes are reported in less than half of people infected with Lyme disease. Flu-like symptoms are ignored by most folk who lead a regular life and are not hypochondriac in nature. These symptoms are only a beginning of the many that follow – those who miss these early symptoms or perhaps do not get the early symptoms are not even aware there are any others to watch for. Those of us with late stage Lyme have even further difficulty getting a diagnosis and treatment because the healthcare professionals in Ontario are not aware of the late stage symptoms to watch for, or the fact that many of these symptoms overlap other diseases!
Please consider my voice as one who is experiencing first-hand the horrors of this disease, horrors that are amplified by the lack of support from a country which has ample resources to recognize and adequately treat what is becoming an increasing epidemic in Canada.
Regards,
Roze R
An online campaign for Lyme Ontario
