My Lyme Disease Story The Journey to Diagnosis Part 2
My Lyme Story Part 2
During the long and winding road to my diagnosis with Late Stage Lyme disease, my illness has worn many faces. In short, it took nearly nineteen years for me to reach this controversial diagnosis.
As I promised a few weeks ago, this is part 2 of my Lyme disease diagnosis story. You can read My Lyme Story Part I. here by clicking on the link.
As with all Late Stage Lyme stories mine is complicated and quite lengthy.
When I began part 1 of my story, I mentioned the diagnoses of Fibromyalgia and Chronic Fatigue Syndrome, also known as myalgic encephalomyelitis. These illnesses have literally stolen my quality of life with the help of debilitating Lyme disease.
Constant pain and exhaustion created a desperate woman out of me.
By the time 2012 rolled around I was basically prepared to beg for relief of any kind, I had reached the breaking point.
I know I sounded like a broken record to my husband. I was constantly complaining of severe headaches, deep bone and muscle pain, never-ending exhaustion and scattered thinking. I knew I needed help, I was just unsure of how to obtain it.
So it was with a sense of relief, that I scheduled my very first rheumatology appointment. During that first visit blood work was the name of the game, sending it off for testing of every possible disease known to man, or so I thought. Of course in true Lyme fashion, my blood work was either negative or borderline for each and every test that was run!
Although my doctor strongly suspected Lupus, she said it could take years before a definitive diagnosis was reached. In the meantime, it was a “wait and see” approach.
I was in excruciating pain.
Apparently my doctor underestimated my pain levels because she advised that I should take Tylenol as needed. That was the extent of the help I received for my severe, daily pain. Discouraged and disheartened I went home to “deal with it.” I would literally lay curled up in a ball on my sofa under blankets and just rock back and forth because the pain was so intolerable.
I became extremely reliant upon over the counter pain medicines like Tylenol and Aleve. Although, to be quite honest with you none of it ever really worked. I would equate it to taking a children’s Tylenol for kidney stone pain. The two are not even on the same playing field!
Even so, it would take six more long months of monitoring my daily symptoms to finally be diagnosed with Fibromyalgia and Chronic Fatigue syndrome. My first reactions to these diagnoses were both relief and disgust.
I was ashamed to have the stigma of these two controversial illnesses.
Both of these diagnoses are often not believed by the general medical community. Yet, I was so relieved to know that I wasn’t dying, even though I felt like I was.
The first line of treatment that was prescribed for my Fibromyalgia was Cymbalta. It lasted for a less than a week and made me feel horrible.
I felt like I was living inside of a bucket, life was happening around me but I was detached and depressed. Deep down, I knew this was not the answer. After a week, I quite taking it. I decided by my own choosing to deal with my Fibromyalgia and CFS as naturally as I could.
Little did I realize, what a huge undertaking that would be, within months my fatigue had sidelined me completely. Still, I stubbornly clung to the idea that I could self-treat.
I was in denial.
The train of thought that I carried around was one of disdain for my illnesses. The belief that I just wasn’t trying hard enough resonated in my brain. In my heart I truly believed that I could simply “will myself” to get better.
The Vacation That Wasn’t
Regrettably, in January of 2013 we took a trip to Walt Disney World. I foolishly made the decision to drive from North Carolina to Florida, over a nine-hour drive one way. I seriously thought, that I would be okay. I have never been more wrong in my life.
The entire vacation was anything but a vacation. I was in severe pain and felt like I might literally drop dead at any given moment. I had seriously underestimated how sick I really was.
I knew something was very wrong. On top of it all, I had kidney stone pain that literally had me doubled over in agony.
Disney World is not equivalent with rest and relaxation. It is quite the opposite. All of the endless standing in line and walking from morning until night took a huge toll on my already exhausted body. I felt like the sludge at the bottom of a mud puddle, stagnant and stuck.
On top of it all, I had a clingy one-year old who insisted that I carry her throughout the theme parks. So I did what every mother does at times, I plastered on a smile and tried to enjoy the time with my family. This was perhaps one of the biggest acting roles of my long career of, “faking being well.”
I came back from that vacation a changed woman; I would never again be the same.
After returning home, the pain felt like I was being ripped apart.
As a result, I could barely do a quarter of what I was used to doing within a day. For example, one major outing like grocery shopping with a one-year old, and I was completely worn out. My exhaustion had reached stunning levels. Sleep eluded me every night. I would have to sleep with my arms and legs completely straight otherwise, my feet and hands would lose complete feeling as if they had gone to sleep.
Severe daily headaches became my norm. Brain fog rolled in and never left. My digestive issues escalated. Sitting and enjoying a meal without feeling nauseated was a thing of the past. It felt like there were rocks in my gut.
My feet were in constant agony. Walking became extremely painful; it felt like I was walking on knives. Misery was my new companion.
Yet, I was told by my rheumatologist, that all of these symptoms were just a part of my Fibromyalgia, arthritis and Chronic Fatigue.
I would have to learn to live with them. She offered me nothing in the form of help, with the exception of what she apparently equated with the Holy Grail in pain relief, more Tylenol. Oh, and a 5mg Ambien for sleep. Wow! I know right. Such medical wisdom is a rarity. (Said with much sarcasm)
She also diagnosed me with Raynaud’s phenomenon, which is basically poor circulation in my hands and feet. Although my doctor never brought up Lyme disease as a possibility, quite often Raynaud’s is a symptom of other underlying conditions, one of course is Lyme.
The saying “When it rains it pours,” is accurate in my experience.
In November of that year, my husband was diagnosed with cancer.
We literally had to move out-of-state for nine weeks of his treatments. It was stressful and exhausting.
We had two small children and the daily grind of appointments finished off what the Disney trip had started. I was down for the count.
I remember telling my husband, “I feel like I’m being poisoned from the inside.”
Consequently, this out-of-state trip sent me spiraling to a place of no return. My new life was a place where pain and exhaustion were my constant companions who ruled my life. Every decision I made was based upon how much energy I had to use up that particular day. I knew I had reached a milestone in my illnesses. Things were getting worse by the minute and I was helpless to stop it.
It was around this time that It began to “sink in,” that “willing myself” to get better was not an option. I was sick and my sickness wasn’t going anywhere.
I continued to go to different doctors and each time I would reach a dead-end. The blanket statement of “Oh, that’s just your fibromyalgia, CFS or arthritis,” became the norm. Hope was something that didn’t exist.
Finally I decided to switch rheumatologists.
Why it took me so long to realize that this needed to happen, I will chalk up to exhaustion. Switching doctors is tedious and nerve-wracking, especially when you have chronic conditions.
My new doctor again ran every possible blood test in the book and then some. She ran blood tests for rare disorders that cost an absolute fortune I might add. My lab results were literally ten pages long.
She was also the first person to ever mention Lyme disease as a possibility. I had my first Western Blot to test for Lyme and my result came back as borderline negative. I might add interject here that the Western Blot result can be notoriously wrong, as proved to be the case in my experience.
Lyme was then ruled out.
She began to talk about pain clinics and trying new medicines like Lyrica and others to treat my Fibromyalgia symptoms. I was not amused. All I could think about was my horrible experience with Cymbalta.
Therefore I turned to cortisone injections. I had gotten several in the past for my carpal tunnel issues and they did seem to help with the pain. By this point, I was in the camp of trying whatever worked, and they did work for a little while.
Lyme was then ruled out, at least temporarily.
Talk turned to pain clinics and trying new medicines like Lyrica and others to treat my Fibromyalgia symptoms. I was not amused. All I could think about was my horrible experience with Cymbalta.
Therefore I turned to cortisone injections. I had gotten several in the past for carpal tunnel problems and they did seem to help with the pain. By this point, I was in the camp of trying whatever worked, and they did work for a little while.
Death by Naproxen
In February of 2014 I had what I would call a near death experience. I had been taking an inordinate amount of Naproxen, an over-the-counter pain reliever that belongs to a class of drugs called N-saids. My pain levels demanded that I sit up and take notice and so I did by taking more Naproxen!
Occasionally I would feel as if the pills got stuck in my throat, which I chalked up to my acid reflux disease acting up. Then one night my throat began to swell and I suffered through my very first severe anaphylactic reaction after taking my favorite pain reliever.
Suddenly after years of relying on over-the-counter pain medications, they were out of the question. I felt like a boat without a paddle.
This is when I decided that enough was enough.
I reevaluated my approach to my illnesses. I decided that there had to be more, much more to my suffering than what met the eye.
Upon the recommendation of a friend, in September 2014, I made an appointment with an integrative health doctor. I was determined to find some real answers.
During my first visit with this new doctor I felt hope for the first time in many years.
Unlike my doctors in the past, Dr. N promised me that we would get to the bottom of this thing once and for all. I was simply relieved to finally find a doctor who took me seriously for the first time in my life!
One of the first blood tests that she ordered was a food allergy and sensitivity test. She explained to me how important it is to heal the gut before tackling other, deeper issues.
Immediately I was placed on a gluten-free, dairy-free and sugar-free diet. I would stay on this strict diet for at least six months. My food sensitivity test results came in showing that I had known sensitivities to over 40 foods. I also have a gluten allergy.
Moral of the story, I have been eating inflammatory foods my entire life!
Hello! This is one of the reasons I suffer from severe IBS also known as Irritable Bowel Syndrome.
Vitamin B and D deficiencies were also found via blood work.
To quote my doctor, “Your values for vitamins B and D are in the toilet.” I was immediately placed on high doses of both of these essential vitamins.
I should note here, that low vitamin B and D levels often run parallel with Lyme disease.
Thyroid issues also came into play during these first visits to Dr. N.
My thyroid levels were imbalanced and I was placed on thyroid medication. I would later learn that I have borderline Hashimoto’s disease.
Several of my other hormone levels were also extremely out of balance. I began taking DHEA and Pregnenolone.
Within six month’s time under Doctor N.’s care I began to see small improvements.
I felt encouraged to finally have some real answers to my lengthy list of 90+ symptoms. However, even at high doses my vitamin B and D levels remained in the gutter.
We began discussing testing for MTHFR gene mutations. Put simply, the MTHFR gene triggers the production of MTHFR enzymes.
Among many other things an MTHFR gene mutation can increase your risk for cardiovascular disease and vitamin B deficiency. It can also make your body much more susceptible to infectious diseases, like Lyme!
Bingo! I tested positive, another answer to my troubles had been found. I was told that it is like I have been driving down the highway of life missing “an entire lane!”
I was placed on a special B vitamin to help with the methylation process to counteract my MTHFR issues.
My recovery was short-lived; Lyme disease reared its ugly head.
Although, I continued to carefully follow Doctor N’s instructions, I continued to get sicker. Finally Lyme disease had entered the picture. It took center stage.
Upon my doctor’s urging I took the Horowitz test. Basically you go down through a list of symptoms and check them off; you are given a score for each item you check off. I scored extremely high, thus pointing to a Lyme diagnosis.
The next step was to order more lab work. A CD57 test was ordered. My result came back extremely low. This result also pointed to a positive Lyme disease diagnosis.
At this point, Doctor N. insisted that I be tested again for Lyme disease through IGenex. My blood work was sent away to Germany to the tune of $250 dollars out of pocket. That was Mid-January 2016. I did not receive my results until March when it came back glaringly positive for Lyme disease.
I was stunned.
After nineteen years I had my answer. Lyme is the culprit behind almost every ailment I have experienced.
I was urged to seek out a Lyme literate doctor immediately to begin treatments.
Lyme disease is not easy to treat.
Relief flooded my heart I knew that I had finally gotten to the root of my problems. I was also extremely angry that I had gone so many years under the radar without treatment.
My Lyme doctor informed me that treatments would be difficult. He also added that I would feel much, much worse before I began to feel any better, mentioning that the goal is remission not a cure.
Over the course of the past nine months I have been through what I do not lightly call, a “living hell.” I have been in the emergency room for breathing problems and chest pains. Again, I have felt that death was imminent. I am still very far away from remission of this awful disease.
Co-infections Wreak Havoc Under the Surface
I suffer from the co-infections of Babesia, which is a malaria-like parasite and Bartonella, a gram-negative bacterium. True to my doctor’s word, my treatments have made me extremely sick. Pulsing antibiotics and other medicines is no fun. The strange cocktails that make up my Lyme disease treatment protocol remind me of concoctions created by a mad scientist.
I take many, many medicines and supplements trying to kill off the spirochetes that have buried deep into my body tissues, brain and heart for almost twenty years. It often feels like I am fighting a losing battle.
Strangely enough, the weeks that I am not on antibiotic therapy I do see small rays of light here and there. Some weeks I will have a good day out of the blue and struggle to remember what I did to achieve it. Then there is the slow sliding back into sickness and the reality of Lyme disease. It is inescapable, a constant merry-go-round of sunlight and storm clouds.
The Importance of Counting My Blessings
The realization strikes me every morning when I struggle to get out of bed, that I have a very long road ahead of me. But, I am thankful that at least now, I have a goal. The goal of remission looms bright in my future days ahead.
I have learned to call upon a higher power to make it through the bad days. The good days are few. But when they come, they are magnificent. It is much easier to see the sunshine, when the clouds are rolling away, than if they had never been there before.
I’m grateful to have a supportive doctor behind me every step of the way, who is constantly rallying for his patients and seeking out new and innovative treatments.
Gratitude has become a way of life for me. I find myself counting my blessings all the time. My wonderful husband and family have gathered behind me and help to bolster me during my hardest days.
Home has become a respite from the everyday life that I can no longer handle and one day soon I hope to be able to spread my wings again and explore this life I have been given.
Until then, I am putting one foot in front of the other and I’m not giving up.
Thank you for taking the time to read my story. If you or someone you love suffers from unexplained chronic illness do not give up hope, keep pushing for answers. You are your own best advocate. I am living proof.
To read more about my Lyme treatment journey you can visit the following posts:
A Window Into The Isolation of Lyme Disease and Chronic Illness