My Lyme Disease Story The Journey to Diagnosis Part I
My Lyme Disease Story
When I first contemplated writing my Lyme disease story, I felt overwhelmed with the enormity of it all. The road I have traveled has been long, painful and fraught with health problems.
I wondered how I could compile a lifetime of suffering into one blog post. I felt that telling my story in parts was perhaps the easiest way to give a clear picture of my journey.
To put it simply, I have been sick for a very long time. All too often, this is the case for many people who have been diagnosed with Late Stage Lyme disease.
After years of countless medical tests, many frightening experiences, lots and lots of doctor’s visits, wrong diagnoses and dare I say a load of money; I ultimately found the answer I had waited so long for on March 16, 2016.
I was finally diagnosed with Late Stage Lyme Disease.
It took nearly nineteen years for me to reach this long sought after answer to my daily suffering. I was thankful, relieved and angry all at the same time.
I was thankful to finally know why I am so sick. Relief flooded my heart, knowing that I could possibly move forward with a goal of remission. At the same time anger simmered under the surface. I was upset that I had been allowed to make this journey alone for almost nineteen years. This was a journey taken largely without medical help and knowledge about my disease.
Shortly after my Lyme Disease diagnosis I began to actively search for other “Lyme Stories.”
Because I was curious to know if others had traveled down similar roads to mine, I did a lot of searching. The many stories that I read, simply underlined my own. While each person’s story was unique, they all shared an underlying theme. Diagnosis came way too late.
Let’s Start At The Very Beginning…
My health struggles began in childhood with recurrent kidney infections that at one point led to the symptoms of sepsis also known as blood poisoning. I know this, because I have the urologist’s records from those early years of my life!
Because of these continuous infections, I was placed on a maintenance dose of antibiotics for literally years. It was a miserable time. I truly believe that this in turn weakened my immune system, setting the stage for Lyme disease to follow.
Do you remember a tick?
This is one of the first questions that people ask me upon learning that I have Lyme.
Why? Lyme disease is transmitted by deer ticks.
While not everyone who has been bitten by a tick contracts Lyme disease, it is a known fact that ticks carry many bacteria, particularly Borrelia burgdorferi the spirochete that causes Lyme disease. Though, quite often, those who do have Lyme do not even recall a tick bite.
I have personally been bitten by several ticks in my lifetime.
The first tick bite I can recall was at the age of twelve. It was attached and had obviously been attached for quite some time. I can still remember its ugly, fat, puffy body.
My father helped remove it and subsequently burned the tick to kill it. I now realize that you should keep ticks once you remove and kill them. If you do become sick in the future, they can be analyzed for disease.
I thought I did not live in a “Lyme State.”
I remember pulling several ticks off of me nineteen years ago that had attached to me while I was mowing my lawn. Again, I disposed of these ticks thinking nothing of it!
After all, I thought I did not live in a “Lyme” state. Lyme is not recognized in North Carolina. I was wrong. Lyme is everywhere. Where-ever there are birds, mice, deer, raccoons and more; there are ticks. Where there are ticks, Lyme disease is always a possibility.
What about a bulls-eye rash?
Unfortunately the general public has been taught that the bulls-eye rash is synonymous with Lyme disease. While it is true that a rash of this sort can be the first sign of illness, I do not recall ever seeing a bulls-eye rash anywhere on my body. Although I have had various red rashes show up at different times throughout my adult life.
Contrary to popular belief, you do not have to present with a classic bulls-eye rash to have Lyme disease.The bulls-eye rash that so many people associate with Lyme disease does not always show up.
The Slow Decline
About nineteen years ago I began to see a slow decline in my health. I have always struggled with some form of fatigue, even as a teenager. I never felt rested even after a full night’s sleep. I knew deep down that the fatigue I struggled with was not normal, but I battled through it and life settled into a sense of normalcy.
So it continued, until the birth of my third child.
It became necessary for me to rest after doing simple chores. I became irritable. My heart would race for long periods of time leaving me exhausted and drained. I began to get frequent migraine headaches and my joints hurt.
I tried regular exercise, losing weight and earlier bedtimes. Nothing worked. I just decided that this must be life with three small children and chalked it up to getting older. I was in my middle twenties!
Ischemic Attack, what is that?
I continued to trudge through my twenties. It was not easy to ignore the daily fatigue and pain. But, at that point I was able to do a fairly decent job of masking my troubles.
That is until my late twenties, when I had what the doctors called an isolated ischemic attack. They thought it was very likely that I had experienced a mini stroke.
I lost the ability to speak normally.
My speech was slurred. I had Bell’s palsy. I suffered from severe muscle weakness on one side, resulting in foot drop.
After being admitted to the hospital for tests and observation, I was poked, prodded, x-rayed, given an echocardiogram and several MRI’s. The MRI’s showed multiple white spots on my brain. But, since I had no baseline or previous MRI, they felt it was inconclusive.
The diagnosis was probable Multiple Sclerosis. My neurologist eventually told me, that I would have to wait and see if another attack occurred. Within a month my foot drop faded and thankfully my speech returned to normal. I breathed a silent sigh of relief.
Not once did anyone mention Lyme disease.
They did not inform me that Bell’s Palsy is a sign of Lyme or that heart problems can be caused by Lyme Disease. Muscle weakness is also a red flag related to Lyme.
I faced the future totally unaware of the bugs that lurked below the surface, just waiting to destroy my health.
And so I continued, still very much fatigued and troubled by what I had experienced. But, I was so glad that I was able to walk normally again.
The Ghosts in My Closet Haunted Me
In 2002 we had just bought a new two-story house. It was an exciting and exhausting time. Adjusting to climbing a flight of stairs everyday left me exhausted. Vertigo, constant dizziness and unsteadiness on my feet began to plague me. I began to have trouble concentrating and felt scattered.
I struggled with shortness of breath. Reading aloud to my children at bedtime became a chore. Talking on the telephone was an agony. It felt as if there were an elephant sitting on my chest.
It felt like a big vice grip was squeezing me around my diaphragm.
As a result, I couldn’t get a good deep breath. It was painful. Now, in hind sight, I realize I was probably experiencing the terrors of costochondritis accompanied by air hunger. At the time, I had no idea what it was. It was frightening. It felt akin to a heart attack.
The bottoms of my feet were painful and swollen. It literally hurt to walk. I ignored all of these symptoms. I chalked them up to life and getting older still. I was in my early thirties!
An alarm bell went off in my head and I thought about MS.
I thought about strokes. I worried that something was terribly wrong with me and that I was a fool to ignore all of these symptoms.
Fear of the unknown kept me from going to the doctor. That saying, “Ignorance is bliss,” comes to mind. All I could think of is what if it is Multiple Sclerosis. Then what? To be honest, I really did not want to know. I didn’t want to face it, whatever it was.
Little did I know every last one of these symptoms is a warning sign of Lyme disease. It would be many years before I realized this was the case.
Setting the Stage
Meanwhile, life continued and my symptom list grew to lengthy proportions. Today I have over 90 symptoms of Lyme that plague me.
Little did I know then, that spirochetes were settling deep into my brain and other organs, literally setting up housekeeping. Thus, the stage was set for heart damage and a lifetime of chronic pain along with the diagnosis of Late Stage Lyme disease.
Consequently, I had no relief for all of my varied symptoms of pain, aches, muscle spasms, chest tightness, etc.
In late 2007, I was having very frequent episodes of low blood pressure. It would feel as if my heart was barely beating at all! This was followed by extreme heart rhythm patterns. My heart would race and race for hours on end. After which I was thoroughly exhausted.
I felt dizzy and weak. I made an appointment to see my cardiologist. He did an EKG on spot and witnessed my heart doing its wild racing. He declared that I had an enlarged heart. I was told that my heart was being overworked.
He also informed me that I had left bundle branch block. This type of heart block puts me at risk for death if I were to ever have a heart attack. I now know that one of the primary causes of heart block is Lyme disease.
My cardiologist scheduled a stress echo. He found my pulmonary pressures slightly elevated, and declared that I had the early stages of pulmonary hypertension. (Pulmonary hypertension is high blood pressure in the lungs.) He told my husband and me, that my life span would be considerably short. He gave me just two years to live. I was terrified. I sought a second opinion.
Second Opinions Are Always a Good Idea
As a result, I made an appointment with the head cardiologist at the local heart hospital. There I received another stress echo and was told that while my pulmonary pressures were slightly elevated, I did not have Primary Pulmonary Hypertension.
I do have left bundle branch block which is unusual in a young person. (I was in my early 30’s) I also have a thickened heart thanks to Lyme disease. My life span was reprieved! I was elated. Not once during all of this testing was Lyme disease ever mentioned as a possibility.
Later this same year foot drop returned with a vengeance.
Foot drop returned during a winter storm that same year. I again was put into the hospital for observation. This time I was subjected to not only multiple MRI’s but also a spinal tap also known as a lumbar puncture.
While, they were looking for definitive signs of Multiple Sclerosis, again the results were inconclusive and vague. We could not get a copy of my old MRI, so they could not compare the spots that were found on my brain. They found spondylosis in all the levels of my spine and bone spurs in my neck.
I was told my foot drop might never go away.
Therefore, they sent me home with a walker and the terrible advice, “Just learn to live with it. Wait and see if more symptoms manifest.” I was so afraid.
Over the years foot drop has come and gone several times. It will appear for a while during an especially hot summer day or when I walk too fast. It is something I have learned to compensate for. It is something that I never had an answer for, until now.
By this time, the stress of it all had taken its toll on me.
Furthermore, I was desperate to get my life back. I went to see my internal medicine doctor to get help for the spinal headache caused by the lumbar puncture. I had been in total misery for over a week. Suspecting Lupus, she gave me a recommendation to a rheumatologist, one of the best things that ever happened to me.
Little did I know then, that I was still several years away from a real answer. But, I did receive my first real diagnosis.
Stay tuned for Part 2.