My Lyme Journey
A Silent Truth
A Personal Story Written by Jackie Lohman
I have always believed that things happen for a reason, but if there was a lesson for me to learn in this situation, I doubt that I will ever know what that lesson is. If I had only known that one camping trip in July 2004 would change my life forever. I had always looked forward to camping trips with my husband and my friends as it was a time to take in all nature has to offer and to enjoy the company of good friends and share some laughs. The pure relaxation of listening to the campfire crackle and the invigorating smell of the outdoors created an escape from life in the city.
I loved taking in all life had to offer, including new experiences and adventures. I had always been a healthy person with no serious health problems. So, when I caught a particularly nasty flu in August 2004, I figured it would go away in a few days and I would continue on with life. But, this was no normal flu. This “flu” left me with extremely sore muscles throughout my entire body like I had never experienced before. I felt such fatigue and pain with this illness that I prayed it would all be over soon. However, this “flu” never went away and I have not felt like my old self since. It was following this “flu” that numerous health problems began to surface in my body.
My extensive journey to regain my health began in September 2004 when I was just twenty-three years old. I jumped from one medical specialist to another desperately seeking an answer as to why I was so ill. I felt like the world’s largest lab rat as every possible medical test was performed on me to find a solution to my health problems. I was evaluated by numerous doctors including a general practitioner, an internist, a rheumatologist, a neurologist, a nephrologist, a cardiologist, a gynecologist, a gastroenterologist, a naturopath, an endocrinologist and the list goes on.
During the next three years, I had such high hopes and expectations each time I saw a new doctor because I figured that surely one of them would be able to figure out what was wrong with me. Possible explanations for my symptoms were thrown at me from every direction, but not one of them seemed to be able to put the pieces of the puzzle together. The internist figured that I was still getting over a mono infection; this surprised me because I had no idea that I had contracted mono at any point.
An evaluation performed by the rheumatologist left me with a diagnosis of Fibromyalgia and Raynaud’s Syndrome. The gastroenterologist performed a stomach biopsy on me figuring I had stomach issues or a possible virus because I had dropped nearly twenty-five pounds despite not changing my eating habits. Of course, this test was normal. There was protein found in my urine which the nephrologist figured was an indication my kidneys were not working properly. Further kidney ultrasounds proved that my left kidney was significantly smaller than my right, but the nephrologist couldn’t pinpoint for sure if my smaller kidney was caused by numerous bladder infections I had when I was a child or if I was born this way. This doctor promised me my smaller kidney wasn’t anything to worry about.
Several visits with my naturopathic doctor proved somewhat helpful but never led to any underlying condition. Saliva hormone testing showed that my adrenal function was extremely low (actually one of the lowest results my doctor had seen) but since the supplements and herbs to boost my adrenals didn’t agree with me, I had to stop treatment prematurely. My kind-hearted naturopath didn’t know what else to do with me at this point and he didn’t have an explanation for my symptoms. He figured I had a persistent virus that was refusing to leave my body.
During this time, I had taken many trips to the emergency room. The medical staff probably knew me by name and thought, “Oh great, here she comes again!” I had episodes where my heart was palpitating and my legs were turning numb and blue. I also had bouts of blacking out and profuse sweats with intense head pain and pressure. A cat scan revealed nothing that would be causing such horrible head pain and pressure.
The event that truly scared me to the core was when I awoke at four in the morning to find my heart racing and beating irregularly with major pain shooting down my left arm. I broke out in a cold sweat and figured this is it, “I am having a heart attack!” There I was laying in a hospital bed hooked up to a heart monitor with white suction cups plastered to every inch of my chest when Doctor “McDreamy” strolls in to tell me that he figures my “heart attack” was just an inflamed chest wall muscle and that some strong anti-inflammatories should do the trick. Well, somehow between being pumped full of anti-inflammatories and being under the care of “McDreamy”, the pain and embarrassment just seemed to melt away.
I felt absolute heartbreak when a couple of the doctors I had seen stated that maybe all the symptoms I had were mental and not physical. They constantly repeated that because all of my medical tests were normal, there was no evidence to suggest any kind of diagnosis. One doctor even proclaimed to me “You are young and healthy, go live and enjoy life!” My health was the one thing I desperately wanted back and how was I supposed to enjoy life when I could barely crawl out of bed each day.
Staying positive and strong was an everyday fight, but I was not willing to give up. I know my body better than anyone else in this world and I knew there was something very wrong with me. It didn’t matter how many doctors told me I was healthy; this was a fight I was going to win! I had completely lost all faith, hope and trust in the medical system at this point. I had always trusted that when illness strikes, doctors would be there to help me and take care of me. Why wasn’t any doctor willing to help me? This wasn’t all in my head and I was positive about that!
I experienced many days where I felt completely lost and alone in all of this. I felt as if my co-workers really thought this was something I was making up just to get sympathy and attention or to erase the fact that I had taken more sick days than anyone should be allowed. I think people had a really hard time understanding what I was going through and couldn’t relate to my illness. My friends would never let on to this, but I’m sure they got sick of hearing me self-diagnose myself when once again another doctor could not find anything wrong with me. How was I to make people realize that some days I could barely carry on a conversation or perform a simple task because I was just too tired and weak? Heck, on my worst days I didn’t even have the physical strength to brush my teeth.
In March 2007, after another extensive battery of blood tests, my blood prolactin level was found to be quite high and an MRI was performed on my head. My endocrinologist diagnosed me as having a tumor in my pituitary gland. I was ecstatic with this diagnosis because I thought for sure that this tumor was wreaking havoc in my body and this was an explanation to all of my symptoms. My heart sank as the endocrinologist explained to me that the tumor was benign and could not possibly be causing my strange symptoms. I was devastated and I felt like I was right back at square one. How many more disappointments could I tolerate?
At this point I could not function on a normal daily basis anymore. I had daily episodes of blacking out and disorientation, unrelenting muscle pain, severe head and neck pressure and memory loss. The fatigue and exhaustion was so horrible that trying to crawl out of bed every morning to make it to work was such a task in itself that I felt like my whole body was going into shock. As I drove to work each morning, I literally felt like the family dog hanging out the car window because I was sweating so profusely. I had to crank down the windows or turn on the air conditioning in the middle of winter just to get some relief.
After pushing desperately through each workday for the past three years the best I could, my body wouldn’t allow me to function this way anymore. In July 2007, I was forced to take a medical leave from my job which was really hard for me to accept because I felt like this illness was taking over my whole life and I was watching everything important to me just slip away. The option wasn’t mine anymore; it was this plague taking over my whole being. My health was deteriorating very quickly and I still had no idea why.
Keeping track of my symptoms had become almost impossible now because there were so many. I was experiencing numbness and tingling throughout my entire body, muscle tremors and twitches, extreme knee pain and swelling, shortness of breath, fever, chills and flushing, blurry vision, nausea, major bouts of sweating, intense head and ear pressure, unrelenting fatigue and exhaustion, kidney and back pain, chest pain and heart palpitations, brain fog, anxiety, memory loss and confusion, loss of balance, hallucinations and incredible pain shooting through my entire body.
I decided I wasn’t going to live like this anymore and I obsessively researched the internet looking for clues to my symptoms. Article after article I read and finally, there it was right in front of me. It all made sense now that this merciless illness that I had lived with for three years was Lyme disease.
I figured that the nasty looking bug bite that appeared on the side of my left knee during my camping trip back in July 2004 was from a different kind of bug than I had ever encountered before. When my health problems started to emerge, I had no clue that this nasty bug bite was the root cause of all my problems. I had a tough time comprehending that a tiny tick was capable of transmitting such a horrible and debilitating illness. I hadn’t even seen a tick on my body anywhere, so how could this be? I learned later on that most of the ticks that carry Lyme disease are as small as the period at the end of this sentence and most “victims” infected with Lyme never even see the tick that has infected them.
I do remember that the tick bite left a “bulls-eye” rash that didn’t fade for months and the question always lingered in the back of my head why a bug bite would leave a hideous rash like that? I do feel somewhat fortunate, however, because it was because of this rash that the mystery was finally solved. This “bulls-eye” rash was the first physical symptom of Lyme disease. If only I had known that when Lyme disease is caught early, a strong course of antibiotics is usually sufficient to eradicate the infection. It is scary to think that there are many people who never actually develop this rash and get extremely sick but have no clue that a tick bite has caused their illness.
Even worse, many of the standard tests used to pick up Lyme antibodies in the blood are not always successful at detecting the Lyme bacterium. I have read research time and time again written by the world’s leading Lyme specialists that Lyme is a clinical diagnosis, but doctors are still relying heavily on blood tests and figure they are the “sure fire” method in detecting Lyme. The Lyme bacterium loves to hide in muscles, tissues, cells, collagen tissue, etc. so the chances of detecting the bacteria floating around in the blood are next to nil. Most Lyme literate medical doctors are now obtaining many more positive results from utilizing certain labs in the United States. These labs specialize in tick-borne diseases and have a much higher success rate.
Not once on my many camping excursions, had the thought of Lyme disease ever crossed my mind. I had heard of Lyme disease, but I was not aware of its signs and symptoms. The general assumption was that Lyme disease did not exist in Canada. Camping in the wilderness was a time to relax, unwind and leave all our worries behind. How could I have possibly known that there was such a serious danger lurking close by?
An unexplainable sense of relief had come over me. A relief I hadn’t felt in years because I finally had an answer and this wasn’t something I was imagining, it was very real. I couldn’t blame doctors because they weren’t educated and familiar with the signs and symptoms of Lyme. Supposedly this wasn’t a real health threat in Canada. Not one doctor had ever pieced together that my numerous and unrelated symptoms could be caused by a tick bite.
To my luck in November 2007, I found a Lyme literate doctor in Canada who officially diagnosed me with Lyme disease and that diagnosis was confirmed with a positive blood test from a specialized lab in the United States. I still thank my lucky stars to this day that I received a positive test because unfortunately, many Lymies do not get a positive test result which makes diagnosis that much more difficult.
This doctor retired very shortly after diagnosing me and I was forced to search once again for a Lyme literate doctor that was willing to prescribe the necessary antibiotics to eradicate the infection. I tried relentlessly to receive treatment here in Canada. I pretty much begged the infectious disease doctor to prescribe me antibiotics and was laughed at and pushed out his door. This same doctor told me I was a fool to waste money seeking treatment in the US when I didn’t really have Lyme. It must be chronic fatigue or fibromyalgia, even though both these diseases are caused by unknown microbes, bacteria, viruses, etc. Hmmmm, I wonder how many cases are actually Lyme?
Even though I had the classic bull’s eye rash and positive Lyme test result – proof that I was infected with Lyme – not one doctor was willing to treat me in Canada and the health care system would not pay for any of my treatment in the US. My only option was to travel to the US every few months as some of the best Lyme doctors were located there. The Canadian health care system wiped their hands clean of me and would not believe that I had Lyme disease.
Fortunately, I located a wonderful and understanding doctor in the United States after exhausting all hopes and dreams of receiving treatment in Canada. It was a glorious day when I began my treatment and I felt like maybe the worst of this nightmare would soon be over.
The day after I got home from seeing this doctor, I was called by a reporter from our local TV station after I had sent a letter to them detailing the problems I was going through with trying to get some help in Canada with my Lyme disease. After interviewing me and getting some pictures and video, my story was on television the next evening. I became a minor celebrity as people started recognizing me in stores and restaurants. My fellow Lymies (people I had met on a Canadian Lyme website) expressed how courageous I was for going public with my struggles.
I really had no one to talk to or support me in my journey with Lyme as no one in my home province actually had it or if they had it, did not know they had it. My mom and I went one day to see a doctor from a city a couple of provinces away who came to speak at the university about the explosion of ticks in Canada and what that meant. Three other women from different cities were also there and recognized me from the TV newscast. We went to lunch together and I felt a great sense of relief while realizing there were others out there who shared my story.
During this time, I wrote several letters outlining my story and tried to get the healthcare system to pay for some of my health expenses. I wrote a letter to the provincial deputy public health officer and the provincial health minister. I eventually got letters back informing me that Lyme disease was very rare in Saskatchewan and I probably had something else which would be picked up by the doctors here. It was all fluff that was meant to make me feel better emotionally and not start a ruckus for the government.
Long-term antibiotics can give many people inflicted with Lyme their lives back and cure them of their symptoms. I just assumed I would be one of those people and that within a few months; I would start to notice a difference in my health. Month after month passed by and still I could not notice a decrease in my pain, brain fog, short-term memory loss, exhaustion and numerous debilitating symptoms. Not to mention my kitchen cupboard resembled a pharmacy and contained every possible supplement and natural remedy under the sun. To this day, my cupboards and closets contain bags upon bags of pills that had promised to restore my health.
One night after I had started to take a new drug, I woke up with serious nausea and pain in my stomach. I went to the bathroom and managed to go back to sleep. The next night, I woke up vomiting. I had severe pain which felt like my stomach lining was being peeled off. I stopped taking this drug and called my mom who came and did the dishes and cooked for me because I could not get off the couch. I then called the doctor who said it sounded like a herx reaction. There was no way I was taking this drug any longer. I didn’t have a lot of options left with the oral drug avenue. I later was told that this new drug was incompatible with the drug I was taking for my high prolactin levels which were caused, the endocrinologist thought, by my pituitary tumor.
It is very disheartening to realize the amount of money that was spent on useless pills that served no purpose in the end. By the time January 2009 rolled around, my very caring and sympathetic Lyme physician was quite concerned with my lack of progress and felt I was a “tough case”. She referred me to her colleague whom she felt had a higher success rate at treating cases similar to mine.
Honestly, I was quite scared to leave this doctor’s care as she was the first person to truly understand and sympathize with my numerous strange and debilitating symptoms. She helped ease my heavy heart and all the embarrassment and belittlement my previous doctors had burdened me with. After all this time, there was someone who truly got the picture and knew what I was suffering through. She was kind, compassionate and made me feel like I was worth something in this world and that I was capable of beating it. I had no choice other than regaining my health and that meant going to the greatest lengths and distances to achieve this goal.
This new Lyme doctor was located in the US as well which meant an even farther plane ride every few months to receive treatment. My first appointment was in February 2009 and I thought that this was going to be the end of my desperate journey to regain my health. Once again, treatment consisted of long term antibiotics but this time some new drugs were thrown into the mix. My favorite (ya right!) were daily injections in my butt that were guaranteed to hit my bloodstream and have a more profound effect on the Lyme bacteria.
My husband was nominated to be the lucky person who would administer the injections and handled it surprisingly well. I turned rather irritable and grouchy a few weeks into treatment as I developed severe scar tissue on both butt cheeks and very quickly we were running out of skin that didn’t have any scar tissue. To add more fun into the picture, I was developing blood clotting issues and my injection site would bleed up to an hour afterwards which caused my doctor great concern. My butt truly felt like the world’s biggest pin cushion and resembled the world’s largest container of cottage cheese!
In April 2009, my gut instinct kept telling me to spread the word about the complexities and ignorance regarding Lyme disease. So, it became official with the help of a very gifted webmaster, my vision for my website came to life. I was so ecstatic at the way it turned out and it was so easy to update the information anytime I read or heard about a new and exciting Lyme treatment. The public deserved to know about Lyme and the precautions they needed to undergo to prevent it. I would do my best to not let anyone else go through the same hell that I went through. There were so many innocent victims out there who had no idea that a pleasant walk through the woods or a fun camping trip could inflict them with an incurable disease. My spirit and my heart were overwhelmed with joy because of taking on this task and I really felt I was doing the right thing.
A follow-up appointment approached quickly in August 2009. I never felt comfortable with the drug choices that were being thrown my way. Every antibiotic seemed to have horrible side effects and I figured I had enough health issues as it was so I couldn’t handle anymore. One antibiotic the doctor recommended had caused severe tendon problems in some patients and I was not willing to touch that drug with a ten-foot pole. Another drug I tried unknowingly caused my heart to act up and cause irregular heartbeats. How could that even be safe? The doctor told me we were running out of options as I could no longer handle the injections, but I was not going to be a lab rat and cause more direct harm to my body by experimenting with these horrible drugs and their side effects. The thought of these drugs flowing through my body scared me half to death.
During this time I slowly watched a lump on my back just under my hairline blow up to golf ball size. The lump was close to my spinal cord and was causing me intense pain. I couldn’t sleep or even turn my head without experiencing excruciating pain. Finally, my dad hauled me to the Emergency Room where the ER doctor proceeded to lance the so called infected cyst and half a cup of pus (or whatever was really in that thing) came shooting out. I know, talk about disgusting, right! My dad actually watched the whole procedure and I still don’t know how he did it.
If this wasn’t enough fun, I had to go to the hospital every two to three days for the next three weeks to get the hideous hole in my back cleaned and stuffed with gauze to prevent infection. I was fighting back tears the first few times as stuffing this gauze into my back was incredibly painful.
By this time, I had quit antibiotics cold turkey! I had enough issues going on with my body that all the unnecessary drama caused by the drugs was the last straw. It is a promising fact that antibiotics force the Lyme bacteria into remission for many people or at least reduce their awful symptoms, but I wasn’t one of the lucky ones. I feel it was necessary for me to give the antibiotics a whirl to see if just maybe they were the answer to my prayers, but there was no such luck and I feel at peace with that now. There were many more avenues not yet travelled and my new plan was to take the road less travelled and off the beaten path.
I never felt in my heart that this recommended doctor was right for me. I felt out of place, ignored and I felt that I didn’t receive the attention I deserved. In March 2010, after much soul searching and debate I decided to leave this doctor’s care even though I honestly had no idea what my next step would be and I was terrified.
During this time I took a much-needed “Lyme vacation”. I continued taking some natural remedies, but I was done with antibiotics. I definitely feel antibiotics have their place in this world and possibly with Lyme disease, but they weren’t the answer to my ailing health. My Lyme diagnosis had taken almost four years so my body was literally full of bugs and the realization set in that maybe it was too late for me to be cured. It had just taken way too long for me to get the treatment I needed and at this late stage, maybe my options were limited. I knew in my heart I needed a completely different approach to beating this disease and I spent countless hours researching, reading and pinpointing my next move.
One horrendous stressor that kept rearing its ugly head following my entire health journey was everyone’s best friend…… the insurance company. I was so completely grateful for receiving my disability cheque each month because my husband and I had a mortgage to pay and were terrified of losing our beloved home. It took several tests and doctor’s notes to finally convince the insurance company to pay me. Even though these diagnoses consisted of chronic fatigue and fibromyalgia, at least it was enough to get my disability. This company tried every possible angle to cut me off the disability. Every time I saw their name on the phone or received a letter in the mail my stomach sank and I immediately got nervous and scared. I kept asking myself if this was going to be the letter explaining that they found another reason to stop paying me.
Can you believe they even shipped me off on a plane ride across the country to see a doctor, presumably hired by this insurance company? I had to get up at four in the morning to be at the airport on time for the five hour plane ride. I hadn’t slept all night because I was worried that I would miss my taxi ride, so when the alarm rang, I got out of bed and into the shower. I was already seeing black in the shower and I slumped to the floor and could not get up. After laying there for about twenty minutes weak and shaking, I got up and went back to bed.
I called the insurance company and said I was sick and could not make the flight. The agent said they would book another flight in a couple of weeks and I had to make that appointment or I would be cut off my disability payments. The next flight was a little bit later in the morning and I managed to fly eight hours that day and find the doctor’s office which was in a hospital in an old part of the city. I grabbed a lunch and slept on both legs of the journey. When I got home, the stress of this long day had totally done me in.
I just had a bad feeling that this doctor would agree with the insurance company that I looked fine and should be able to work. To my absolute joy, this doctor agreed with me! He examined me and felt that I had chronic fatigue syndrome and was definitely eligible for disability. I was ticked at first that he didn’t agree with the definite Lyme diagnosis, but I figured at least I wouldn’t lose my home from not receiving a monthly income.
Thank God, my disability payments followed every month and I felt a small sense of relief for the time being, but the hounding never stopped. My insurance company enrolled me in a six-week chronic pain course which was held five days a week. This course was extremely demanding to say the least. It sapped the one ounce of energy I had to get through the day and involved such a full schedule that I didn’t think I would be successful in completing the entire course. All this course did was try to make me play the part of a victim and accept my illness instead of helping with ways to treat it and get well.
I would do anything I could to prove my disability to the insurance company and was like their little lap dog following their every demand and instruction. The words hound, harass, and push come to mind when I think of this company. No matter how sick and disabled I was, they continued to pressure me. I completed the course and sighed a breath of relief that I actually survived, but I knew this wasn’t going to be the end of it.
My place of employment contacted me during this time to inform me that after almost three years, they were unable to hold my position any longer. I was so grateful that I worked for a wonderful company that agreed to hold my job this long and was so understanding of my medical situation. I had received awesome medical benefits including vision and dental care along with prescription medication benefits that helped me tremendously during this nightmare.
I think this was the icing on the cake for me at this point and I broke down. I felt like this disease had stolen everything from me and I couldn’t take anymore. Devastation settled in like a cloud around me and I can’t explain it any better other than to say it felt like a swift kick to my stomach. How many times was a person supposed to feel like they were being booted to the curb and rejected like they didn’t matter in this society? My self-esteem took a real nose dive when all I wanted was to be a productive member of society again. “Shouldn’t it matter who we are as a person, not what we choose as a career?”
While continuing my Lyme research, I located an extremely well-respected and honored Lyme physician in the US. This doctor appeared to be a godsend and led the path for all other Lyme Literate Medical Doctors to follow. I read numerous articles and published studies written by this doctor and was amazed at his expertise and knowledge. He was a German doctor and was light years ahead in the field of Lyme. He spoke at seminars and taught at universities. He had the highest success rate of any other known Lyme doctor and treated the disease with a whole body approach, rarely using antibiotics.
I pondered the idea of giving it another shot because giving up now was not an option. I couldn’t fathom feeling this way for the rest of my life. I was too young to be in this position and the answer was out there. I just hadn’t found it yet. I felt like a lost little puppy dog and it seemed no matter which way I turned, it was the wrong direction.
I decided to contact this doctor’s office and get some more information. The office manager conducted a phone interview with me and went over the office procedures and treatment protocols. Both the manager and I had to be sure this was the right place for me and that I was aware that their Lyme approach was significantly different than most of the popular Lyme doctors out there. I already knew in my heart this was the right avenue for me, but I was so disappointed it took me this long to find the correct treatment approach. I tried not to be too hard on myself as I still believed that everything happened for a reason and that I was meant to travel on this long journey.
In the meantime, I waited to hear back from this manager to see if I would be accepted as a new patient. When I got the good news I was more than excited! I couldn’t wait to travel this road and start my new treatment. I knew things would be different this time and lo and behold, I was right.
I was scared, to say the least, of going to a fourth Lyme doctor! How was I going to be treated this time? I didn’t just want to be another number and not appreciated or treated the way I deserved to be. July 2010 came and I was ecstatic to have my first visit with this doctor and I knew right away that I was finally in the right place. It was different this time.
Wow, were my fears dissolved after my first appointment with the new doctor. They were kind, compassionate and had an answer to every question I threw at them. All the necessary tests were performed and then some, including blood, urine, and saliva, heavy metals, etc. They performed muscle testing which indicated the problem areas in my body and unbelievably even knew which supplements and remedies my body needed. I had never seen anything like it and was amazed because the pieces finally fit together. Immediately, my symptoms along with my pain flared immensely which in the Lyme world is a positive sign, as things need to get worse before they get better.
After all this time the mystery was finally solved! Not one other doctor had ever thought to order the necessary tests that were desperately needed to look at the “garbage dump” my body had turned into. A year and a half of antibiotics completely messed with my internal flora and immune system and put me in the position that I am now in. When I think of the disgusting things lurking in my body, it makes my skin crawl. My doctor didn’t waste time on pinpointing exactly what kinds of bacteria, parasites and fungi are living in my system, but instead has included plenty of critter killers in my daily arsenal.
My doctor simplifies the complexities of the Lyme maze by stating that once the Lyme bacteria enters the body it opens the doorway for all kinds of nasty critters to enter as well. Healthy people can eliminate most normal daily exposures to metals, pollution, toxins, and parasites living in the food we eat and so on. My digestive system, kidneys, liver and colon are so overburdened with toxins and bugs that the garbage is not flowing out properly and continues to build up in my system. My kidneys and liver were the most significantly compromised. Also, I am retaining fluid like crazy and my lymphatic system is very overwhelmed and clogged up.
I was so ecstatic to finally have a reason for my twenty-five pound weight gain because I felt like an air-filled blimp and was extremely uncomfortable carrying around all this excess weight. My spleen was enlarged and the left side of my body was physically larger than the right side. The doctor figured this was due to an unknown virus attacking my body. Muscle testing proved parasites, yeast and mold were a huge issue for me and needed to all be aggressively addressed with treatment.
Every day I had different tests and treatments done but I knew it was all for the greater good. I underwent blood cleansing where an IV in my arm pumped out my blood into a machine, cleansed it and pumped my life flow back into my body. Needless to say, seeing all the blood flow out of my body made me pretty weak and woozy, but I think I was a good trooper through it all. I did some Chelation for heavy metals, a couple colonics which I am too embarrassed to talk about, some lymphatic drainage procedures which included a cool machine which I stood on for ten minutes as it vibrated my body and helped my lymphatic system to open up and get the bad stuff moving around to make its way out. I finished off with a wonderful detox body wrap and facial which was fantastic and made it all worthwhile.
Heavy metals proved to be an area of concern for me too. Unbelievably, the contrasting dye injected into my arm from my yearly MRI’s had significantly built up in my body. This sure made me never want to have another MRI in my life. A couple other metals I am not even familiar with popped up as well. My sodium levels were extremely high due to my poor adrenal gland function which is due to all the stress on my body from fighting this chronic illness. Magnesium, molybdenum, copper and zinc were just a few of the minerals my body was severely lacking. It completely blows my mind how my previous Lyme doctors never addressed these issues and it truly boggles my mind that it took this long to figure this out. All these health concerns need to be cleaned up for me to find some relief from the Lyme bacteria before the real Lyme treatment even begins.
I was sent home from the clinic with a strict daily treatment regime which included parasite medications, antifungal, antiviral, antimicrobial remedies, nutritional and detoxification support, a daily kidney “cocktail” and the list goes on. Detoxification is extremely important in my situation so I have incorporated dry skin brushing, Epsom salt and magnesium oil baths, weekly jiggle sessions on the lymphatic machine, peat mud baths, supplements, and exercise.
Also, I acquired a really neat detoxifying deodorant that I apply to my underarms every night before bed and this helps to eliminate the nasty unclean smell radiating from my body despite my daily showering and bathing. What an embarrassing problem this has been and my husband has not been afraid to remind me of this. This is definitely a full schedule, but I can already see the positive results and that in turn, makes it much easier for me to follow this regimen.
The realization has come to me that I have to clean up my living environment and do everything I can to gain back some of my health, so I have decided to eliminate as many chemicals and preservatives from my health and household products as possible. I never realized how many horrible chemicals were swarming around in my favorite bath care products. What an eye opener! They were saturated in parabens, glycols, petroleum products and preservatives. Pretty much all the most highly toxic and cancer-causing chemicals known to man!
Following all the facts I learned from my new doctor, I decided to eliminate my favorite products and do the big switch to organic, natural products. I was truly not disappointed at all to switch over when I learned of all the scary ingredients in the products I was previously using. I did some research and found some great new goodies to try out. Bath products are a girl’s best friend and make bath time a lot of fun, so I was hoping I could find some smells that I enjoyed. I surely did and feel so good to know they aren’t doing my body any harm and I can stock up on my new found favorites. Sure, it is hard to eliminate all toxins in your living environment especially when you step outside your door and breathe in all the toxic gases and environmental pollution, but I figured I would do everything I can to at least part ways with as many toxins as possible, especially the soaps and lotions I would slather my body with on a daily basis.
When I was younger I pictured myself as having children. I always thought that one boy and one girl would be wonderful, but then I thought it doesn’t matter to me as long as my children are healthy and happy. When I picture children now, it panics me to think of the risk that Lyme can pose to them. It has been proven time and again that Lyme can be transferred to the baby during pregnancy. Even though there are precautions that can be taken during pregnancy to avoid the spread of Lyme to the baby, the risk deeply scares me. I would never forgive myself for being selfish and for wanting children so badly that I would pose this situation on them. To not know if Lyme would make them sick from day one or if a stressor of some sort would cause the bacteria to surface and cause illness later on in their life. I have yet to discuss this with my current doctor and frankly I am not sure I want to hear the response to that question. I don’t know if I can handle another disappointment, especially one of this magnitude. I stay hopeful, and am not willing to dismiss this life changing opportunity anytime soon. Some days it truly saddens me when I see the joy parents experience with their children and that I may never have the chance to experience this.
To bring you to my story this current day…… getting well is now my full-time job. I truly miss working and having a normal routine, but I know that to hold down a job between swallowing endless pills and chugging glass upon glass of water, sleeping ten to twelve hours per day, appointments, detox, exercise and rest that the chance of that holds quite slim. Of course, my number one goal is to get to a better place, health wise and to control this disease, but I desperately need a purpose in this life of mine. I want more than anything to wake up each day and be thrilled and excited to serve my purpose in this world and to be really great at whatever it is I do. Helping others suffering with Lyme brings me the greatest joy and I want to tell my story and prevent others from making the mistakes I did and I hope to make their journey to health a little easier. I was on my own when this whole saga began and I sure wish I had had the knowledge of a caring soul to guide me on my path to health.
Complications have arisen from having this disease for so many years. My kindhearted naturopathic doctor that I still see from time to time couldn’t find a vein at my last visit and tried numerous times to hook up my IV for my nutrition pack with no luck. He tried over and over until I told him I felt like passing out and we needed to give up for the day. I believe the many, many needle pricks over the years have created a lot of scar tissue in my veins and even the best IV techs continue to have problems finding a vein in my arms.
I am supposed to continue with my yearly MRI’s to monitor my pituitary tumor, but it scares me every time the tech tries to put in my IV for the contrasting solution as I also had an episode where a vein could not be found and the tech continued to prick at me until I passed out. Eventually, they got a vein in my hand, but this scary experience is in the back of my head every time I am scheduled for an MRI.
Faith, trust and hope have all been washed away by the Canadian health care system. Never could I have imagined the deepest of disappointments and complete belittlement when searching for a diagnosis and treatment. The sheer thought of seeing a medical doctor here in Canada paralyzes me with fear as every single one I had seen dismissed me and made me feel like a liar and a leper. Currently, I have little fight left in me but one day, I hope to regain my momentum and continue along with thousands of others who suffer with Lyme in Canada. We deserve the same level of health care as anyone who suffers with cancer, hepatitis, AIDS and so forth. We are no different.
No one would ever wish to be this sick! This disease literally sucks the life from you. It takes away everything and everyone that matters to you. It takes a piece of your life away from you. Some people get their lives back and others don’t. This disease doesn’t deserve to rob us of our livelihoods while the Canadian healthcare system continues to ignore us and dismiss us.
I will never know if it is merely coincidence or if the cooler and rainier weather in 2004 had anything to do with the many more Lyme reports popping up in North America. This year continually proves to have been the “Year of Lyme” as I continue to read reports and stories regarding those inflicted with this disease. But I know I am not alone and it is scary to fathom the potential health crisis with Lyme. Does the word epidemic ring a bell?
I know I have a long road to recovery ahead of me and that I might never completely beat this thing but at least I know now what I am battling. It took a while for the fact to sink in that because of my delayed diagnosis, I am now suffering with chronic Lyme disease and the treatment will be very costly and complex. When I look back on this “journey to discovery”, I am not bitter or angry. I am leaving all of that behind because it has made me who I am today. It was my instinct to persevere, my undying courage and strength that got me through all of this and I am grateful for these experiences. I can now look forward to the future.
Looking back on all this, I now realize that I have become a much stronger person, as it is a constant fight each and every day living with this disease. I know that the love and support that surrounds me from family and friends will help me overcome this obstacle. There continues to be a few very special people in my life who have proved their loyalty and unwavering support to me through all this and I thank God almost every day that I have them in my life. These people have been by my side and stood up for me when I was too sick to help myself. They continually shut down other’s theories that Lyme isn’t a serious health threat and relentlessly showed these naysayers that someone they loved suffered terribly with this disease and that it needs to be taken seriously. Words can never express my love for these select few and I thank you from the bottom of my heart.
I have crossed paths with so many wonderful people dealing with this same health burden and each individual has taught me something unique and life changing. I feel so blessed to have met these wonderful people and I wish you all the best in your journey to health. It is the true fighters like you that make living each day and pushing through so important. In the end, it is really up to you to regain your health. Your doctor is your most valued support system, but they can only lead you on the right path and encourage your treatment decisions. The spiritual strength and outmost desire to get healthy is up to you and only you.
I look at my life and I have learned to be grateful for each and every day. I see the positive light that comes from having this illness and that maybe it is my special purpose to tell my story and prevent others from having to go through this same ordeal. Maybe that is my lesson in all of this and that certain things really do happen for a reason.
