My IC Story

Part 1

We all wear the scars of our past experiences, both within and on our minds and bodies. We own them as we are the result today of all that we have been exposed to, all that we have felt and all that what we have done.

Several months ago I was getting my first hydrotherapy session done at a holistic spa in Montreal and throughout the procedure the nurse was asking me simple questions about my health and past-basically my reasons for pursuing the internal cleansing of my digestive tract. Before I spoke a word, the nurse looked right at me with obvious sympathy and told me that she could tell from the torment in my eyes that I had lived a very full life and had been through a lot. It felt strange being analyzed by a complete stranger, and I could not help but feel the tears building up. I cannot explain why I felt so comfortable with this woman (perhaps because she was doing a very personal protocol on me) or perhaps it was simply the remaining desperation to seek comfort from someone, but I began to explain in detail for the first time to a complete stranger my health problems and how I felt responsible for my own poor health. I began divulging personal details about my history and all of the poor decisions I felt I had made that may had led me to my current sickly state. The rendition went on for the entire duration of my visit and the poor woman sat there transfixed with tears in her own eyes, listening patiently. At the end of my session, she came to me with a French book, called “les mots positives”, told me it was her daughters book and that she had put personal hand written notes and tips on how she overcame her own chronic illness in her youth with the help of positive words and thinking. I was deeply touched that this stranger had given me such a personal gift. I read the book and I returned it the following week.

The book was wonderful; however it was not it’s words that changed my life as much as the self- realization that occurred during my hour long rant. I realized as I was leaving that I had indeed lived “a lot”. I had grown up very quickly and had put my poor body through hell. This hydrotherapy session changed the way I viewed my sick body. I was no longer angry with myself or my body for being weak, I became suddenly immensely grateful with how strong I had been and how my body had survived such abuse. I realized that I was going to begin respecting my body in a way I had not done before.

I was fairly healthy as a child, but after a severe case of whooping cough, I suffered chronic bronchial weakness, resulting in repetitive allergies and recurrent bronchitis. I remember always being “sick with horrid allergies” at my mid-summer birthday and was always wheezing during the Christmas holidays. Years passed and inevitably childhood turned into teenage-hood. I had a very turbulent youth, I was your typical small-town insecure teenager trying to make her way in the world, believing she knew everything and really knowing nothing. The boredom of a small town left ample time for mischief. My family environment was strained, and in an attempt to remove myself from it, I threw myself into unhealthy relationships and bad habits.

One bad decision led to another and I found myself suddenly a heavy smoker, as well as an abusive drug and alcohol user. A year after I began smoking, I developed chronic asthma, likely due to my existing bronchial predisposition, which followed shortly by the beginning of years of numerous steroid inhalants to control the respiratory discomfort. I continued to smoke; I suffered recurrent respiratory ailments, often requiring hospital visits. I began taking the birth control pill to avoid unwanted pregnancy. My heavy drinking led the way to an irritated bladder and I was diagnosed with the first of many of UTI’s in my mid-teens. My drug use and excessive partying escalated also, resulting in a three week hospital visit with pneumonia and severe bacterial septicemia . I was sixteen.

My chances of survival were low and I was put on intravenous broad spectrum antibiotics and heavy painkillers for the entire duration of my stay. I can still remember the sound of my mother crying as the head of disease control (my doctor) told her that my survival rate was only 40%. Someone was definitely watching over me and I recovered, although not fully. The weeks of this antibiotic load and years of  smoking, asthma pumps, birth control pills, drinking and drugs had wreaked havoc on my internal balance and I fell into a depression. I left the hospital with a band of ecstatic family members, all the while feeling as if all life and vitality had been sucked from my body. I felt like a zombie. I was unable to shake this continuous brain fog. Following my hospital stint, I quit doing drugs, yet suddenly developed chronic anxiety and panic attacks, sometimes dozens a day. I was in a state of burnout; I had developed chronic fatigue but was unable to relieve it as I was also suffering crippling insomnia. I went to doctors begging for sleeping pills, none of which worked. I do not remember the exact day it happened but I suddenly sank into a permanent state of apathy.

I had absolutely no “joie de vivre”. I felt overwhelmed by basic life choices and had a very low self-esteem. I could not shake the disabling fatigue and struggled for the basic energy to get through each day. I became addicted to coffee, drinking 8 or more cups a day. I depended on packs of cigarettes for a boost and increased my alcohol consumption to mask the depression. Poor dietary choices, the pill and lack of activity led the way to weight gain, further compounding my problems. I was in abusive, dysfunctional relationships that caused emotional turmoil. The late nights and heavy drinking left me lifeless and so I temporarily began using stimulant drugs again. UTI’s turned into kidney infections and asthma became pneumonia’s. One UTI turned into the next and I was always mildly “burning” as I called it. I became dubbed the “tiny bladder girl” due to my abnormally frequent trips to the bathroom. I just laughed it off, not paying much attention as it was more inconvenient and annoying than downright painful (at that time). I experimented with different dietary choices, and became a short-term vegan, followed by low carb, vegetarian and then took on a more Mediterranean approach, revolving my diet around fish and vegetables.

The summer I was 23, I had a series of dental procedures done. A childhood playground incident had left me with a broken tooth that through compromised immunity suddenly became a huge infection. That summer I had four fillings and three root canals done. My health continued to decline. Shortly after my dental work, I began to be fed up with feeling awful all the time. Out of sheer frustration, I finally decided to successfully quit smoking and all stimulants, including coffee. A few months after dropping the tobacco, my asthma disappeared. I no longer needed medication, but other than my improved respiratory condition, my health and energy was not improving and I had chronic digestive issues.

I cut down my alcohol intake in an attempt to feel better but shortly thereafter began developing horrible acne. My sudden acne prompted me to pursue dietary changes yet again, I began researching organic foods and chemical-free beauty products.  A year of improved eating helped my mental state slightly, and I began to have a real interest in health and nutrition and began flirting with the idea of going back to school. Just prior to my first semester at Cegep, I began a host of bizarre, seemingly unrelated symptoms. I had debilitating heart palpitations, having hundreds a day, painful liver inflammation, uncontrollable tremors, repetitive ringing in my ears, feelings of dizziness and vertigo and an almost chronic abdominal discomfort. My anxiety returned, accompanied by many panic attacks and my UTI’s became savage. I took a short trip to Florida and unfortunately I fell ill with a severe UTI and was treated once again with oral antibiotics. Upon my return to Montreal, I decided to visit the clinic because I had finished my run of med’s but my painful urinary symptoms were still present. My doctor ran some tests and found nothing to indicate that I still had a UTI. I went home thinking it would just get better on its own. My symptoms increased until I was no longer able to function and I returned to see my doctor again in desperation. I will never forget that day. It was a day before my birthday. I was about to turn 25, and I was diagnosed with Interstitial Cystitis.

 

Part 2

I left the clinic that day feeling strange. I was definitely doubtful and a bit in denial. I was well aware of the pain and discomfort I was feeling physically but it was as if the realization that I might be in this type of pain for the rest of my life was just too far-fetched to grasp and impossible to accept. I was not really sure which steps to take next.  I began ‘google-ing’ my symptoms as if to try and find something that might convince me that I truly did not have this awful disease. I started reading and researching site after site, link after link, possibility after possibility. I must have read through 50 sites that night alone, searching for the “answer” to my predicament.

One site led to the next and I began discovering all about other possible issues that could cause similar symptoms such as digestive imbalances and internal fungal infections. I continued on all organic food as I cut out all products containing synthetics. I became paranoid and began eating a stringent diet of mostly raw vegetables and nuts. I delved into crazy supplements, seconded by extreme fasts and detox cleanses. I amplified my search, trying and buying anything and everything that promised some form of relief. I wasted a lot of money, shocked my weak body with ceaseless changes and became obsessed with finding a solution.

I managed to convince myself that I would be fully cured in a matter of a few short months, and so I continued my plans for full time school, even though the pain was becoming incapacitating. In public I began feeling embarrassed; there was no way to hide from my classmates that there was something very wrong with me as I was escaping the classroom every twenty minutes to use the bathroom (after holding it in agony for fifteen minutes prior). I spent class breaks crying in the washroom, on the phone with my mother, and missed numerous classes through shear inability to leave my bathroom in the morning. Several of my classmates remarked on how well I ate and how healthy I must be, as all the while I suffered silently right before their eyes. I felt utterly alone.

It’s important to note that at the time I was also working part time to be able to afford my schooling. The stress of school and work, and the exhaustion of “trying to do it all” when my body was obviously in such a fragile state took its toll. My IC intensified; various unrelated symptoms raged in addition to my urinary agony. I experienced deficiencies – likely due to my restrictive diet-,  terrible heart palpitations,  nervous system symptoms such as uncontrollable shaking, liver pain, ringing in my ears, dizzy spells and panic attacks. My courage seriously began to falter, I spiraled into a complete breakdown, depressed and discouraged. It seemed as though all of my reading and efforts had only made things worse. My over-consumption of nuts for energy had turned into severe allergies. I remember withdrawing from everyone around me. Most of my friends had basically stopped calling me after hearing that I was ill and that I would not be joining them for drinks at bars or eating in restaurants. My family members lived abroad. My boyfriend was having a hard time coping with my depression and was also frustrated that I was unable to do any of the things we had always done together. His coping mechanism became to escape me and spend most of his time out of the house. I did not have the energy to do  basic activities or the urinary stamina to leave the house for even 15 minutes to run errands. I became a prisoner of my bathroom. I spent hours and hours a day alone in there crying, sitting in a warm bath trying to ease the pain. I could not get through a half hour of sleep without waking to dart back to the bathroom.

I neglected my appearance, I did not have the energy to keep doing yoga and had no desire to wear anything but my house robe. The intimacy in my relationship suffered as I was physically in too much pain to have sex regularly. Out of fear and remorse, I forced myself in an attempt to upkeep my faltering relationship.  I felt so guilty for not being able to be the same friend and girlfriend I had once been. I felt like I was losing myself completely to this disease and scrambled to keep any semblance of who I had been and the life I used to lead alive. I tried to explain to the people in my life that I was seriously ill, but no one seemed to believe me or understand, and I felt as though everyone blamed me, and my poor past choices, for my current situation. I became filled with panic, blaming myself as well. My myriad of symptoms increased and this led to many desperate mid-night emergency hospital visits, always yielding no hope and little explanation. My boyfriend began believing that perhaps there was truly nothing wrong with me,  and that I should simply ‘learn to live with it’.

A doctor I was referred to literally laughed in my face after I expressed my worry and physical symptoms, mockingly asking me if I had had a fight with my boyfriend. He claimed that women often experienced urinary symptoms in response to emotional upheaval. I was promptly diagnosed with a panic disorder, and sent on my way with a prescription of anti-depressants, and refused any further testing or analysis. I was crushed; I left there heartbroken. My treatment by the medical establishment led me to pursue alternative therapies and remedies offered by Holistic Nutritionists and Naturopaths. Yet after various sessions and new treatment approaches, no one seemed to know what was wrong with me or how to go about helping me. I had to quit my job. Mitigating school was hard enough, and I just did not have the extra energy. I used all of my remaining money on supplements and treatments. Fortunately I had the financial support of my boyfriend who shouldered all the living and medical expenses. In so many ways I owe my recovery to his benevolence. I lived at the school library, conducting online reading for over eight hours a day, months on end. I felt as though I knew more about my condition and health than any of the Doctors or Naturopaths I was consulting. I truly started to feel like I was going crazy and began threatening myself with potential suicide if by my 26th birthday I was still suffering in this way.

 

Part 3

The holidays finally came around and along with them the merciful end to my semester. I had already decided that I would not be returning to school. I was simply too ill and had become too dedicated to my own personal research and quest for a cure. I spent the months leading up to Christmas on a strict ‘anti-candida’ regime which thankfully granted me some control over my urinary symptoms. I was still experiencing the same ‘burning’ pain but I was using the washroom at 45 minute intervals rather than 15, which enabled me a little more freedom of movement. Even with this slight decrease in urinary pain, my digestive distress increased, as did my heart palpitations. I was plowing through every detox regime imaginable; from colon/parasite cleanses to liver/gallbladder flushes, water and juice fasting, none of which yielding the kind of pain-free urinary existence I longed for.

Despite my questionable health, I decided to take a trip down south in early January to try and start the New Year on a positive note. Just prior to my trip, and following exhaustive reading on the anti-fungal power of coconuts, I attempted one last-ditch effort to “kill all my candida” through the pursuit of a coconut oil fast in which I consumed nothing but 14 tablespoons of extra virgin coconut oil and water a day. To my detriment, instead of gaining wellness, I became gravely ill, suffering from severe low blood sugar, nausea and ferocious vomiting, rippling stomach cramping and near fainting spells. I was forced to end the coconut fast dramatically after only one day. It was over 48 hours before I recovered to some semblance of the un-well girl I was before, nursing myself back on small easily digestible meals of fruits and steamed veggies. What I didn’t know then was that this calamity was just the beginning of a spiraling health crisis I was to come face to face with.

While on vacation days later, I indulged in a ton of fresh seafood as I enjoyed the ocean air. Crustaceans and shellfish galore; crab, lobster, shrimp and loads of seared tuna found their way onto my meal time plates day and night. It is important to note that I had cut out all meats, grains, fruit juices (and most fruits) and dairy months earlier as part of my anti-candida regime. I had thus increased my seafood intake as a means of compensating my diet. So one evening at the restaurant I ordered a large succulent garlic crab platter. As I ate it, I swore it was the best crab I had ever had in my life! However my culinary gorging was abruptly terminated as shortly thereafter, I began experiencing a powerful allergic reaction; my throat constricted, my heart began palpitating and I fell into a terrible panic attack. I immediately ceased consuming the crab out of fear. I felt as though any feeling of well-being that remained within me disappeared after that dinner. I felt faint, lifeless and my palpitations became unbearable. This incidence with the crab let me to notice a startling pattern between how my cardiac and anxiety symptoms increased with the amount of seafood I ate. Plugging myself back into online research I began digging into possible toxins in seafood which could be linked to my reaction. Many of the articles led me to the phenomena of mercury toxicity, and its potential role in human illness. As I delved deeper, I discovered that the chemical element mercury transforms into an organic form when introduced into the human or animal gut called methyl mercury which kills our friendly intestinal flora, paving a way for overgrowth’s of pathogenic bacteria/ yeasts, often resulting in candida albicans overtaking in abnormally large amounts. This candida then bonds onto mercury, further increasing chances of toxicity and hindering proper elimination and detoxification of this poisonous metal. At this point I realized that there was no way to avoid the undeniable connection between my “candida overgrowth” and mercury poisoning.

Part 4

My return to Montreal found me knocking down the door of a local Naturopath known to specialize in mercury detoxification. Multiple tests ensued; the analysis of if I maintained food allergies, abnormal hormone levels and where my heavy metal load was at. The results took about three weeks. Not only did the results confirm that I indeed had dangerously high levels of mercury in my body but that I was also suffering from toxic levels of aluminum, titanium and copper. Many of the everyday products and foods that our population consumes contain traces of a range of heavy metals such as titanium, copper, aluminum and nickel. We absorb these toxins continuously without realizing that we are slowly and unknowingly poisoning ourselves. Titanium mainly takes the form of oxides found in cosmetics and beauty products, copper appears in most food and its toxicity is usually the result of zinc deficiency. Aluminum is used abundantly as a flocculation agent in tap water, in baking goods and powders, foil and in vaccinations as a replacement preservative to the controversial Thimerosal which contains mercury.

I attempted chelation therapy with DMSA to try and purge metals from my body, and ended up in a detox crisis that landed me in the ER again with my mother flying home to care for me. Chelation therapy is basically the use of a chelating agent to remove metals from the body. After assessment of my heavy metal levels, I was put on DMSA (dimercaptosuccinic) capsules, every three hours, in an attempt to eliminate my high levels of metals. This particular drug removes metals through the kidneys and urine. This process of elimination severely affected my bladder leaving it raw and searing. Due to my current state of toxicity, my body was unable to cope with the sudden large release of mercury and I suffered debilitating detox symptoms such as vomiting, near-fainting, sweating and a vicious migraine. I truly felt as though I was going to die. I reached out to my regular Doctor, who would not even acknowledge that I had mercury poisoning and disregarded my test results, claiming they were non-conclusive. I had been prescribed the DMSA by a Naturopath.

I studied every possible piece of information about mercury. My relentless investigating gave way to a link between amalgam fillings (50% mercury), root canals and illness. Amalgam or ‘silver’ fillings contain 50% mercury and are mixed with other toxic metal alloys such as nickel, tin and copper. Due to the warm environment of our mouths, fillings (aka dental restorations) have been scientifically proven to leach about 17mcg of mercury per tooth into the human bloodstream every single day. Continual doses of toxic metal percolating into the body can paralyse cells and disintegrate the myelin sheath (the electrically insulating layer of our brain neurons) paving the way for the development of neurodegenerative diseases such as MS, ALS and Alzheimers.

I was shocked and appalled to discover that most root canals (of which I had 3) tested positive for containing anaerobic toxic superbugs that were untreatable by antibiotics as there is no blood flow to the tooth . When a root canal procedure is performed, the inner chamber or root of the tooth is drilled out in order to be filled with an antibacterial material and then closed with a filling. The problem is that within each tooth, around the root, there are millions of tiny tubes called dentin tubules, they are much too small and plentiful to ever be able to be cleaned out properly and the antibacterial material used to disinfect the dead tooth is too viscous to reach all of the narrow chambers, leaving some live tissue behind to-for a lack of a better word-decompose. This rotten tissue becomes infected, as it is no longer receiving a blood supply, transforming into the ideal breeding ground for dangerous bacteria. These pathogens grow and produce toxic by-products that are flushed into the human blood stream through the action of masticating. The issue is that based on the anatomy of our teeth (in that no blood reaches them), they are unable to receive white blood cells from the immune system to fight any infection that may develop and/or persist there. Sadly, the humimmune system does not recognize if an infection occurs in an ‘inaccessible’ area, and so still continues to respond by sending out fleets of white blood cells. This persistent act of ‘attempting to heal’ eventually leads to the taxation and severe depletion of the immune system, which can lead to failure of all immune function. Please note that root canal therapy is the only medical procedure where it is accepted to leave dead human tissue in a living body.This newly acquired knowledge left me desperate to remove my root canals, and so I hastened to a holistic dentist (holistic dentistry is the industry’s finest for tooth/root canal extraction) who proceeded to ‘un-do’ all of my previous dental work. I had all three root canals exan tracted within a 48 hour period. Amazingly yet unsurprisingly, all three had infections. I knew I had made the right decision-particularly since I noticed an immediate improvement in my health . Within 24 hours, I felt significantly less dizzy and faint however the process of recovering from my dental work, in addition to my heavy metal burden and IC with associated symptoms ie. endless palpitations, left me praying for reprieve. I was still suffering from elevated fatigued, confusion, disorientation and paranoia (from the mercury). I was not even sure I had the mental clarity to adequately assemble the information that I was reading and felt as though I was on the verge of a complete mental breakdown. I became really scared that I was going to die before I would be able to help myself.

I had been to see two different Naturopaths, and spoken to many more over the phone over the months leading up to my mercury crisis and felt utterly disheartened by their lack of understanding or knowledge about IC and my many health problems. After months of chronic research, I truly felt as though I knew more about my disease than they did. My father had seen a Naturopathic Doctor in his youth for his own health problems, and it had really helped him, so my parents sought out his help on my behalf as a last minute resort. I will never forget this man’s kindness in taking me on as a client even though he was newly retired. He spent hours of his weekends sitting in an office with me, watching me cry and learning everything he could about my situation. He ran many ‘free’ tests for me and spent many hours on the phone listening to my multitude of complaints and questions. This Doctor introduced me to a new way of looking at disease and at the healing of my body. With his guidance; I began to see miraculous changes in my health. I instantly stopped all drastic ‘detox’ methods, and focused rather on trying to support my body nutritionally while allowing it to rebuild itself at its own pace. I did not need to consult with him for very long, but there is no doubt that what I learned and taken from him will be cherished forever.

Following this new-found ‘philosophy’, I was so inspired by my improved health that I began to look into taking the Naturopathic course offered by his school. More reading led me to discover the importance of Ph. balance in the body and the benefit of following an alkaline lifestyle. Within a few short months my bladder symptoms had decreased by 60% and my palpitations were few and very far between. I was filled with hope, excitement and finally felt this certitude that I would eventually be 100% back to myself! I began preaching my newfound knowledge to my friends and family, and have watched as they too began seeing improvements in their personal health.  I started stepping back out into the world and by summertime I was re-connecting with family and friends and starting to feel like a normal person again. I was doing so well; even able to make the trip with my mother back to Florida, to spend my grandfather’s last days with him. For that I will always be grateful. I knew I had finally broken the glass ceiling; I was racing towards claiming my life back. I knew I was headed in the right direction and that the worst was far behind me.