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 be taught in this situation I doubt I will ever know what that lesson is.  If I had only known that one camping trip in July 2004 could possibly change my life forever.  I had always looked forward to camping trips in Saskatchewan with my husband and my friends.  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, the invigorating smell of the outdoors and the 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 very healthy person with no serious health problems.  So, when I caught a particularly nasty flu in August 2004 I just figured it would go away in a few days and I would continue on with life.  This was no normal flu.  This “flu” left me with such 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.  Although, this “flu” never went away and I have never felt like my old self since becoming sick.  It was following this “flu” that numerous health problems surfaced in my body. 

My extensive journey to regain my health began in September 2004 when I was just 23 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, internist, rheumatologist, neurologist, nephrologist, cardiologist, gynecologist, gastroenterologist, naturopathic physician, 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 one of them had 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 put the pieces of the puzzle together.  The internist figured that I was still getting over a past 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 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 25 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 kidneys were just fine. 

Several visits with my naturopathic doctor proved somewhat helpful but never led to my underlying condition.  Saliva hormone testing showed that my adrenal function was extremely low but since the supplements and herbs to boost my adrenal’s 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.  Also, bouts of blacking out and sweating profusely with intense head pain and pressure.  A CAT Scan revealed nothing out of the ordinary that would be causing such horrible head pain and pressure.  The event that truly scared me to the core was one evening 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 ant-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 everything I was feeling was mental and not physical.  They constantly repeated that because all of my medical tests were normal there was no evidence to suggest a possible 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.

I stayed positive and strong and 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 you and take care of you.  Why wasn’t there 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 truly 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 as best I could, my body wouldn’t allow me to function this way anymore.  In July 2007 I was forced to take a disability 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 just 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.  I was experiencing numbness and tingling throughout my entire body, muscles 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 day and night 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 almost four 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 that I hadn’t 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?  Although, 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 though 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 and have no clue that a tick bite 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.  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 Saskatchewan let alone 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, especially in our little province of Saskatchewan.  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.  Although, 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.  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 was now over. 

My treatment to get rid of this horrendous “bug” consists of long-term antibiotics.  This is an option doctors in Canada refuse to accept, as they believe open-ended antibiotic treatment has too many risks and complications.  In reality, I sincerely believe that the benefits outweigh the risks.  If continuing antibiotic treatment till my symptoms have resolved will give me my life back then I say “I’m all for it!”  My treatment will be much longer and complicated because of the length of time the bacteria had been allowed to invade every possible organ in my body.  I am just so thrilled to have a diagnosis after all these lost years of my life; this disease is not raining on my parade anymore!

It is a common occurrence for Lyme patients to be misdiagnosed.  Among the most common misdiagnoses are Fibromyalgia, Chronic Fatigue Syndrome, Multiple Sclerosis, Parkinson’s, Lupus, Depression, Bipolar Disorder, Anxiety Disorders, etc.  Lyme tends to mimic many other diseases and its symptoms are so complicated and unrelated that the correct Lyme diagnosis is sometimes difficult to pinpoint.  It is not uncommon to hear the usual phrase “it must be all in your head”.

Lyme Disease is reaching endemic proportions all around the world and there desperately needs to be more education and awareness focused on this devastating disease.  The public and medical community needs to be informed that this disease is spreading rapidly and it can’t be ignored.  Due to global warming, the spread of tick populations are being established in more and more areas across Canada and many people are at risk.  This illness most certainly will affect those near and dear to our hearts if prevention and awareness is not put forth.  Lyme Disease is a very devastating and serious disease and if it is not diagnosed and treated early it can cause serious complications involving the heart and nervous system. 

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 may now be 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.

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.  This disease has changed the way 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.