My Lyme Disease Story The Journey to Diagnosis Part I

My Lyme Story

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.

My Lyme Story My lyme-disease-diagnosis

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.

Shortly thereafter, I began to feel extremely fatigued, the kind of tired that is in your bones. I was diagnosed with tachycardia and told to be extremely cautious of exercising alone, riding roller coasters or anything that might set my heart into a hyper rhythm.

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.

My Lyme Disease Story

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.

My Lyme Disease Story setting-the-stage-for-lymedisease

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.

Pulmonary Hypertension

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.

Heart Block

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.

Lyme Disease Story Lyme is A Thief

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.

This brings me to Part 2 of my Lyme story, Fibromyalgia, Chronic Fatigue and my eventual diagnosis with Chronic Late Stage Lyme disease.

Stay tuned for Part 2.

I am sharing my personal story to bring awareness to the community and the world of this terrible, yet largely preventable disease. Please continue to follow along as I will be sharing Part 2 of my Lyme Story in the coming weeks.
As always thank you for reading and I wish you well!
Valerie

 

 

 

 

 

 

 

 

 

 

 

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16 Responses to My Lyme Disease Story The Journey to Diagnosis Part I

  1. Priscilla says:

    Love you all the time. You are so brave to tell your story. Let me help some. Love Mom

  2. chelsea w says:

    I don’t want to say I “enjoyed” reading this, but it was nice to read and go, “Yep, I know that feeling.” Or, “Oh boy…that symptom.” A lot of people hear 90 symptoms and think we’re overexaggerating for sure, but they can quickly add up with any chronic condition! I am looking forward to reading the rest of your story. Thanks for sharing!

    • ValerieB says:

      Thank you so much for reading Chelsea. I’m so sorry that you have experienced so much of this yourself. Lyme is truly just ridiculous when it comes to the number of symptoms that go along with it. I was almost embarrassed to include the number 90+ for my symptom count. The terrible thing is the list just keeps growing and growing. Some days I wonder if it will ever end! It is so true with every chronic illness, that unless you have experienced it first hand it is hard to believe! I hope to post part 2 in a few weeks. =) I appreciate you following along. xoxo Valerie

  3. Thanks for sharing your story. Lyme is a beast. My heart aches every time I hear a Lyme story, yours included, Valerie.

    • ValerieB says:

      Dear Sarah,
      Thank you so much for taking the time to read my story and for your kind encouragement. I truly appreciate it! I hope you will come visit again soon!
      Blessings
      Valerie

  4. […] ValerieB on My Lyme Disease Story The Journey to Diagnosis Part I […]

  5. Diana Bero says:

    what an awesome job you are doing with sharing your story.

  6. You’ve been through so much! So glad they finally gave you an answer. ((hugs))

    • ValerieB says:

      Dear Kristin,
      Thank you so much for taking the time to read this. I truly appreciate your words of encouragement. Blessings, Valerie

  7. Angela Sanchez says:

    Dear Valerie, I lay here late at night not sleeping and so thankful to have found your blog. I have late stage Lyme that was diagnosed as fibromyalgia for 22 + years. I kept looking for answers and had to fight for Lyme testing from my physician. It is so difficult to be able to put in words what chronic illness is like to live with. You feel like you are not living. Just surviving. Especially when you used to do so much. Your words could have been my own. So very similar. This is when I know I am not alone and must fight to continue on. There are so many of us out there and we have to keep going and educating ourselves and hopefully in the near future it will be an easier fight. I am in the beginning stage of treatment for chronic Lyme. It is difficult to say the least but I have to try. I am also from NC and had many ticks removed throughout my childhood. I will keep you in my prayers! Thank you for being a Lyme warrior and for putting into words what it is like to make it through each day!

    • ValerieB says:

      Dear Angela,
      I am so sorry that you are suffering from this horrible disease. It is hard to explain what it is like to live with Lyme and chronic illness. I am hopeful that in the future North Carolina will change its stance on Lyme. I am in my tenth month of Lyme treatments and it has been very difficult. I truly appreciate your kind comment and the encouragement. Sometimes I feel so alone in all of this too. I would love to hear more about your journey and about the doctor you are seeing here in NC. I am seeing an integrative health doctor and he has been an enormous blessing. I know there are doctors that treat Lyme in the Raleigh area. But, I am hopeful I do not have to travel that far. Blessings to you and your family and hoping for a healing 2017.
      Valerie

      • Angela Sanchez says:

        Hi Valerie,
        Thank you so much for the reply. I am so enjoying your blog! Reading your words just amazes me how similar this illness has affected our bodies. I am really going through a rough patch with starting antibiotic treatment. Right after I started my treatment I noticed a lump on my neck. Ultrasound showed several large cysts and many nodules in my thyroid. It was also slightly enlarged. I go this next week for biopsy. Have you had any thyroid issues? The one cyst has some calcification and is quite large. Hoping they can drain it a bit. I feel like I can’t breath as it is with this and the costochondritis.

        I live out west now and the llmd I am seeing is in Colorado. I’m going to do everything I can to stick this out. Each day I try to tell myself that I am one step closer to feeling better. I am trying to let go of the guilt that I am feeling for not being able to do exactly what I want to do and not being able to do what others want me to do. I have no idea what normal feels like anymore. I feel like a prisoner trapped in my body. I mostly stay silent to those around me, about the daily struggles that I face. Reading your blog has helped me validate all that I struggle with. No one really understands unless they themselves are walking this walk.

        My husband also had prostate cancer. Caught early and successfully treated.
        I pray you are able to restore your health!! I will follow along your journey as I continue mine. We are Lyme warriors and must be our own advocate. It is such an exausting fight. It’s so sad that we as the patient seem to know more than our doctors. Every doctor I have gone to, other than a llmd, has just completely ignored me when I mention Lyme or given me the “stare”. I could go on and on. I know you understand. Happy New Year and praying for better health in 2017!

        Blessings,
        Angela

        • ValerieB says:

          Dear Angela,
          Oh, I am so sorry that you are having thyroid problems on top of the Lyme. I am being treated for Hashimoto’s thyroid disease. It is tough to deal with on top of everything else. I hope you get some answers soon! I’m happy that the blog is bringing you some encouragement. I know what it is like to feel totally alone and not be understood by doctors. I get the same response from doctors here if I mention my Lyme. The only one I can discuss it with is my Lyme doctor. Everyone else just looks at me like I am crazy. It is no fun! Best wishes with your treatments, I hope that you see improvement in the new year. I am almost one year into treatment and have made such little progress, it does get discouraging. But, I know that I have been sick a long time and it is going to take a while to see the improvements I am looking for. Wishing you a happy new year filled with hope and healing. So happy to have “met” you. Keep in touch I will look forward to hearing how your treatment goes! Blessings, Valerie

  8. […] My Lyme Disease Story The Journey to Diagnosis Part I ⋆ Lilac and Lyme on My Lyme Disease Story The Journey to Diagnosis Part 2 […]

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