Lucy Kinninmonth
Destined to Make a Difference
It’s very easy in life to take your health for granted. I feel that prior to August of 2012, I did just that. Since then, I have became acutely aware of how important it is to be healthy and able-bodied.
I have been a very active and healthy individual most of my life, seldom suffering from even a cold. So, that being said, I was very unprepared for what was about to happen.
My parents had been visiting from Scotland for the first time since I had moved to Canada. Of course, they wanted to visit Vancouver Island. We spent time seeing all the usual tourist attractions and making the most of what Victoria has to offer. It was a beautiful weekend, perfect weather. At one point, while my parents were at an exhibition I had previously visited, I decided to lay under a tree on the grass by the parliament buildings, and watch the world go by.
An hour later I woke up. I had fallen asleep in the sun and was now a rosy shade of beetroot. Thinking this was the worst of my worries, I got up and headed back to the hotel.
The rest of the holiday went without a hitch. While I was sad when my parents departed, we had enjoyed a great visit and I settled back into my normal life.
My Early Symptoms and Diagnosis Troubles
Not more than two weeks later, I began to feel increasingly ill. At first it was just odd, seemingly random complaints, but these soon become a multitude of symptoms. I felt very run down and tired, my submandibular lymph nodes were swollen, my left thumb went numb … I remember thinking it weird at the time. Not long after, my whole left hand went numb with pins and needles, then my arm. I would get searing pains from my shoulder to the tips of my fingers and sensations comparable to electric shocks running up my arms.
By this point I was worried. By the time I dragged myself to the ER (I did not have a family doctor) my legs were tingly and exactly HALF of my face was completely numb. I was very weak and could not grip a pencil. I could barely move my neck from the pain that shot down my body.
After examining me, the doctor looked concerned and slightly baffled…the traditional reflex tests weren’t pointing to one particular disorder. An MRI was ordered of my cervical vertebrae (the vertebrae of the neck) and head.
The symptoms affected my work as I was unable to perform surgery due to my inability to grip surgical instruments. I also had to make adjustments in my personal life: I could not grip a hairdryer or use my left hand to wash my hair, I couldn’t open jars or bottles and I had to be very careful when carrying heavy objects or boiling water. Actions that normally I would not think twice about became tedious and difficult.
During the next few months, test after test was performed, The conclusions were always the same same: nothing abnormal found. My neurologist mentioned Multiple Sclerosis and explained that my symptoms fit this possible diagnosis. The consultation with him was a bit of a blur, both from stress and pure unadulterated fear. MS was later ruled out. I had no white lesions in my brain indicative of this disease process. The relief I felt was bittersweet however, there were still no answers.
I continued to accrue all sorts of insane symptoms: I had sharp, unrelenting,
shooting pains in my muscles; neck pain so severe that it prevented me from lifting my head off my pillow unaided; joint pain similar to arthritis; headaches, and chest tightness that made me feel like I needed to almost “gulp” air into my chest. I was constantly dizzy, nauseous, had tinnitus and an intermittent chest pain that felt like I was being stabbed in the left side of my chest. I was also absolutely exhausted throughout the day, while most nights I could not sleep. Nights that I did manage bouts of sleep, I would wake up drenched in sweat.
One evening I awoke and could not see out of my right eye. Another time I woke up on my bedroom floor. I had no idea how I had come to be there, how long I had been there. I didn’t know what day or time it was or where I was.
Suffering Work and Worsening Symptoms
My work was suffering, I couldn’t remember my work mates names. I was stuttering, unable to form sentences. My co-workers and clients were obviously concerned. I would get in my car and forget my usually familiar route home.
I started seeking relief from chiropractors and massage therapists. The treatments would temporarily ease the pain. This approach ended with an emergency visit to the hospital when I was unable to walk due to sudden, intense lower back pain. I was in bed for a week recovering.
On Dec 20th 2012, four months after symptoms had started, I was feeling marginally better than I did most days. I had just begun my work day when I experienced a tightness in my chest, almost comparable to an asthma attack. I turned to ask a work mate (my assistant?) if she had an asthma inhaler. All I remember after this was lying face down on the floor, unable to get up. Luckily, someone managed to catch me before I hit my head. Then I was being taken by ambulance back to the all too familiar hospital. Radiographs, CT scans, heart rate monitors, blood work was done. Results showed all normal..as usual. The incident was dismissed as stress and anxiety. I knew this wasn’t the case as I had not been stressed prior to that point in time.
The episodes recurred three or four times a week (sometimes more) for the next few months. Plus there was an added complication of heart palpitations and irregular beats. A heart murmur had also suddenly developed and the joint and body pain was so extreme that no analgesic would touch it. Lying in bed I would writhe in absolute agony, feeling like I was trapped in my body, unable to escape.
One day I tried a Percoset, which had been prescribed for back pain during my previous hospital visit. This was the first and only medication that gave me any relief.
It was a true, real life nightmare.
I
Searching for a Diagnosis
I even travelled home to Scotland in April 2013 where my father, who is an orthopaedic surgeon, had organized medical visits and a specialist appointment with an infectious disease doctor. After an ultrasound of my liver, extensive blood work, a cardiologist appointment etc…no one could come up with a suggestion as to the cause of my symptoms. By now I found it very difficult to walk unaided, was extremely fatigued, had significant pain in my joints and at a point in my Scotland visit I started getting uncontrollable tremors in my right arm. Sometimes it felt in my head that I was shaking from the inside out. I just felt so sick.
In may of 2013 i was having intense abdominal pains on the right side on my body…it was intermittant and again I tried to ignore this the best I could. But alas it worsened and I ended up giving in and yet again checking in at the ER. Pretty sure they were sick of the sight of me….I was sure sick of them.After more tests, another ultrasound and a CT I was diagnosed with acute on chronic appendicitis and was rushed into emergency surgery.
Appendix free, I was told by the surgeon after the operation that actually my appendix wasn’t as inflammed as previously thought….Frustrating. I continued to have the same pain as I had pre-operatively for a number of weeks post-op and eventually this subsided.
Not able to find any family doctor who really was interested in figuring out my situation I floated between specialists, ER doctors and walk-ins.
By now I had been to 25 different doctors none of which could tell me what was wrong with me.
Breakthrough
travelled home to Scotland in April, 2013. My father, who is an orthopaedic surgeon, had organized medical visits and a specialist appointment with an infectious disease doctor. Even following an ultrasound of my liver, extensive blood work, a cardiologist appointment, etc. no one could come up with a suggestion as to the cause of my symptoms.
By now I found it very difficult to walk unaided, was extremely fatigued, had significant pain in my joints. At one point during my Scotland visit, I started getting uncontrollable tremors in my right arm. Sometimes it felt in my head as if I was shaking from the inside out. I just felt so sick.
In May of 2013 I was having intense abdominal pains on the right side on my body. It was intermittent and I tried to ignore it as best I could. Alas, it worsened and I ended up giving in and checking in, yet again, at the ER. I am pretty sure they were sick of the sight of me….I was sure sick of being there!
After more tests, another ultrasound and a CT scan, I was diagnosed with appendicitis and was rushed into emergency surgery.
Appendix free, and hoping that the problem had been solved, I was very disappointed to be told by the surgeon after the operation that actually my appendix wasn’t as inflamed as expected. It was so frustrating. I continued to have the same pain as I had pre-operatively for a number of weeks post-op however, eventually, this subsided.
I was unable to find any family doctor who really was interested in figuring out my situation. I floated between specialists, ER doctors and walk-ins. By now I had been seen by 25 different doctors, none of which could tell me what was wrong with me.
As a veterinarian, I knew about Lyme disease and wondered if it was possible that I had been exposed. I devoted hours to research and to reading medical papers (of which there were surprisingly few). I joined a Lyme Disease Support Group.
There I was in contact with literally hundreds of people with the same symptoms as I had. They, too, had been through the exact experience that I had faced with the medical system.
Subsequently, I met a woman who would come to change my life, or should I say, save my life. She enlightened me on the controversy regarding Lyme disease within the medical community. She had been suffering with Lyme for 22 years and was working with a naturopath to combat her infection and symptoms.
I had my reservations about naturopathic medicine, however it seemed like my only hope. Through my naturopathic doctor, I sent my blood to a well known lab in California, at a personal cost of $900. (I had previously requested testing for Lyme but had been rejected as I had been tentatively diagnosed with Lupus by a rheumatologist. This diagnosis was later dismissed due to unsupportive blood work results and wayward clinical signs.
My results from the California lab were strongly positive for Lyme Disease.
I immediately began a two month treatment with doxycycline. This was followed by one month of an intravenous antibiotic known as Ceftriaxone that I was able to administer to myself at home.
In the first month, I easily could have believed I was dying….the pain, headaches, fatigue, palpitations and chest pain increased ten fold. I was very limited in what I could do while on it. I lived alone, so at times my biggest fear was that I may not wake up. Nonetheless, I continued working, at times half days. I administered the antibiotics four days on, four off and tried to schedule it with my three days off from work.
By the end of the month, I felt something I hadn’t felt in about a year….I felt NORMAL. I had energy, no pain, no dizziness or vertigo. No tinnitus…
Side Effects of Lyme Disease Treatment
The worsening of symptoms when under treatment is known as a Herx-heimer reaction. This is a large die-off of bacteria which releases toxins into the bloodstream and temporarily worsens symptoms. It was a good sign, it was a sign that I was fighting the infection and hopefully winning.
I eliminated Gluten, sugar, alcohol, dairy and caffeine from my diet and boosted my immune system with fifty-six pills a day – a concoction of vitamins and herbs as well as detoxifying tinctures recommended by my naturopathic doctor. Boosting a very depleted immune system before treating with antibiotics is crucial to successful treatment. It was incredibly hard to feed myself when going through this, especially on such a limited diet. I lost around 20lbs and did not look good.
It was recommended that I do at least four months of IV treatment but I was very aware of side effects of long term antibiotics, Clostridium Difficile infection being one of them. Instead of treating for a set period of time, I decided to titrate my antibiotic usage to effect, placing my own IVs at times. If I had felt absolutely no effect after 1-2 months, then I had promised myself I would not continue.
I went to Vegas a month after I stopped treatment. I drank alcohol and ate what I wanted, something I had not done in such a long time. The best thing? I felt great!
I did another two courses of IV antibiotics over the next six to eight months as well as a six week course of Tinidazole (antibiotic) orally when the symptoms began creeping back. I am presently off any treatment and maintain myself with as healthy a diet as I can manage. I try to minimize any triggers, namely sugar and stress.
Recovery
To my knowledge there is, as yet, no cure for Lyme disease and no specific protocol to successfully treat it.
What I do know is that there is a significant need to bring more knowledge and awareness to the general public about Lyme disease. People need to know what to look for and how to prevent it. We need to fight for better testing and diagnosis and unite with the medical profession to find a cure, or at least a unanimous and consistent treatment protocol.
I encourage people to be their own advocate when seeking treatment; to listen to their body and their symptoms. You are the one who knows your own body best. I had ALWAYS been healthy. The sudden nature of the symptoms that I had experienced lead me to believe that it just couldn’t be what I had what was being diagnosed (MS, fibromyalgia, CFS, Lupus). These diseases did not fit 100%, with my symptoms. As well, fibromyalgia is a symptom of an underlying disease process, whether it be depression, infection or response to an overwhelming stressful event etc.
If caught early, Lyme is a very treatable disease. The hope is that affected patients can be successfully treated in months, rather than over many years; that the medical costs will be in the thousands, rather than the tens or hundreds of thousands of dollars.
There is a Lyme vaccine available for dogs. Why not for humans? Once it is accepted as a real disease there will be a drive to do more research into prophylaxis, testing and treatment options. Best case scenario is that once Lyme is recognized as a real medical issue, it can be covered by our medical system just like any other disease. For many, it can be absolutely devastating financially.
I am in a position to have a voice and I feel have a duty to help people as well as their pets. Knowledge is a very powerful tool and when used in the right way can change lives and the world for the better. I hope that my story will help someone one who has had – or is having – a similar experience. My website provides links to further information and support.
A favourite quote of mine is by Jane Goodall:
–
“You cannot get through a single day without having an impact on the world around you. What you do makes a difference and you have to decide what kind of a difference you want to make.”
Well said.
Addition helpful links and information:
Canadian Lyme DIsease Foundation: www.canlyme.com
International Lyme and Associated Diseases Society: www.ilads.org
Vancouver Sun Sept 11/13: http://www.vancouversun.com/health/Vancouver+clinic+takes+bite+chronic+disease/8895285/story.html