Searching for a Diagnosis: Living With an Undiagnosed Illness | My Lyme Disease Story: Part Three
It took ten months for me to get an accurate diagnosis: from experiencing my first symptom to the day I met the Lyme doctor that changed my life forever. Ten incredibly challenging, overwhelming, and confusing months.
Here's scary thing is about living undiagnosed with Lyme disease: the longer it goes undiagnosed and untreated, the harder it is to “get rid of” or fight into remission. Lyme is something that if you catch it early enough, it can be successfully treated quickly and easily. But, in general, the longer it goes untreated, the exponentially longer it takes to treat successfully. In such cases, it often becomes chronic and requires a plethora of treatments and methods to manage. This is what I believe happened in my case. I went ten months without being treated. This was enough time for my three tick-borne infections to make themselves at home and wreak havoc on my body.
The Emotional and Mental Battle of Living with Undiagnosed Illness
For some, ten months may seem like an astounding amount of time to go undiagnosed. Yet for others, ten months may feel like only a drop in the bucket. That’s the thing with Lyme disease; some people go years—a lifetime, even— undiagnosed or misdiagnosed. Regardless of the length of time you go undiagnosed, it is an emotional and mental battle.
The experience of searching for a diagnosis comes with a lot of emotions and mental challenges that can be very hard to articulate. There is a lot of weight added to your life when you are living with an undiagnosed illness that seems to be a mystery to every doctor you see. Not only does having an undiagnosed and worsening disease present an obvious physical challenge, but it also comes with a mental and emotional battle. Being left undiagnosed for months or years on end leaves your struggle feeling endless and hopeless. You can quickly become disillusioned with the medical system and feel lost, isolated, and alone. You become desperate for answers and scared of facing a future that—at the time—seems very dark.
The longer I went undiagnosed and the worse the state of my health grew, the harder it became for me to cope with it all. My reality was changing in front of me and there was nothing I could do to stop it. I watched my good health slowly slip away, and with it went many of the comforts of life that made me feel inspired, secure, and optimistic. As I confronted the mental and emotional challenges I faced each day, it was hard to stay motivated to search and push for a diagnosis. Each unsuccessful attempt to solve the conundrum that was my health made it that much harder to push forward.
A Series of Unsuccessful Efforts
I’ve heard many stories of Lyme patients who went through months or years of testing and doctor visits to get a diagnosis. Sometimes they even go misdiagnosed. Because Lyme disease manifests as such a wide spectrum of symptoms, it is all too easy for it to go misdiagnosed as something else: from autoimmune diseases, to mental health disorders, to empty diagnoses like “chronic fatigue syndrome”. Because of that, Lyme disease is often known as the “great imitator”. Throughout my time trying to find a diagnosis, there were mentions of various diseases that doctors suggested may be worth looking into. From multiple sclerosis, to autoimmune diseases, to “post-viral syndrome”—I was set on an emotional roller coaster ride with each new potential diagnosis that was proposed and then ruled out.
I was never misdiagnosed, however. I just went undiagnosed for a while. My journey to a diagnosis was filled with many unsuccessful and discouraging visits with various doctors and specialists. I got many different types of tests done, all to no avail. With each negative or “normal” test result, you would assume that I’d be relieved, as it meant that I was cleared of one more serious illness. Ironically, I felt the opposite. I knew in my gut that there was something serious at play. The symptoms I was going through felt too extreme to be explained by a minor cause. Having them go unexplained was scary, confusing, and overwhelming. I was worried that the doctors were missing something big (which I came to find, they were). Even worse, I was scared of never finding out what was wrong with me and, in turn, continuing to grow sicker and sicker. Without having a diagnosis, it was hard to hold hope for a brighter future. With each unsuccessful attempt at finding a proper diagnosis, whatever little hope I had grew thinner.
Here is an overview of the various doctors I saw, what tests I had done, and other efforts I made to find a diagnosis:
Doctors and specialists: Over the ten months I went undiagnosed, I saw a series of four primary care doctors, three of which were at my school’s health center. When I was home from school, I saw my childhood doctor at least four times. She was the one who conducted the initial tests and would refer me to various specialists. On a side note, when it comes to referrals to specialists, it is important to pursue them with intensity. There were a few referrals that I had to request and push for from my doctor, even when she thought it may not be necessary. Not to say that she wasn’t right in her opinion, but after a few visits with my general practitioner, I soon realized that she did not have the expertise I needed to find answers. That I did not fault her for, as there is a reason we have specialists and that the referral system is set up the way it is. Yet once realizing that there was not much more she could do for me, I used her guidance and position to get access to the specialists I thought I needed.
I also saw an otolaryngologist (or ENT: ear nose and throat specialist), audiologist, neurologist, and had my tests reviewed by a rheumatologist.
Testing: I had many tests conducted in attempts to find a diagnosis. I had many, many blood tests done. To be completely honest, I cannot recount what all the blood tests checked. Most of the blood work I had done came back “normal”, with the exception of an abnormal antinuclear antibody (ANA) test result. Upon further tests that were reviewed by a rheumatologist, my abnormal ANA levels were ruled out as a concern. I even had two Lyme disease tests done, both of which came back negative. I also had an MRI, CT scan, and hearing test conducted, all of which came back normal.
Once being diagnosed with Lyme, I had more in depth bloodwork done that showed I had deficiencies in certain nutrients, including iron, zinc, and certain fats.
Beware of Negative Lyme Test Results
As I mentioned, before seeing a Lyme literate doctor, I was tested for Lyme disease twice using the standard Western Blot test. Both of these tests came back negative. I would later learn that these negative test results were meaningless. Here lies one of the biggest problems with how the mainstream medical community, in general, handles Lyme disease. There is an extreme over reliance on test results to rule out a diagnosis of Lyme disease. There is the assumption that you only have Lyme disease if you have a positive test result. Even if Lyme tests were infallible, this would be a narrow-minded view for doctors to take.
Unfortunately, Lyme disease tests are incredibly inaccurate. Concerningly so. There are many pitfalls of conventional Lyme disease testing—from the accuracy of the tests, to the strands of Lyme disease bacteria that are tested for, to the way the test results are interpreted. Because of these issues, false negatives are common. Too many unaware doctors see a negative Lyme test result as a reason to completely dismiss Lyme disease as a possible diagnosis. There is a huge misconception that Lyme tests provide accurate results and that if you have a negative test result, you do not have Lyme disease. That is false. You do not need to have a positive test result to have Lyme disease.
Let me repeat that. Just because your Lyme test came back negative does not mean you don’t have Lyme.
I want to shout that from the rooftops. That misconception leads many future Lyme disease patients to be told that they do not have Lyme disease, even if they do. It not only leads them to go undiagnosed, but it can also stop them from possibly pursuing the potential of Lyme disease any further.
Unfortunately, that is what happened to me. I think I got tested with Lyme the first or second visit with my primary care doctor: about three months into being sick. The Lyme disease test came back negative. I remember her adamantly reassuring me and my father that she was confident I did not have Lyme disease. Because of this, for many months I ignored the possibility of Lyme as an explanation for my symptoms. If only my doctor was aware of the inaccuracy of Lyme test results, maybe she could have saved me from turning into a chronic case.
Again, by no means do I blame my old doctor. She truly had the best intentions. However, she does serve as an example of the dangers of ignorant doctors and the need for more awareness of the misconceptions and intricacies of Lyme disease within America’s medical system.
I will dive more into the reasons why Lyme disease testing is inaccurate another day, so stay tuned for that. In the meantime, I would recommend watching Lyme expert Dr. Bill Rawl’s video on Lyme disease testing and diagnosis. It helps explain some reasons why Lyme testing is not fully reliable. In his words, take negative Lyme test results with “a grain of salt”.
Trying to Find Answers and Going Down the Rabbit Hole
I became very well acquainted with the internet over the ten months I went undiagnosed. Every new symptom led me down another rabbit hole as I attempted to find a new diagnosis. Each time I left more confused, panicked, and hopeless than when I opened my computer. I’ll tell you, those automated, self-diagnosing “symptom checkers” on the internet are a time suck. They’ll tell you that you could either be sick with a cold or on the edge of death.
The internet is a double-edged sword. Although there is a lot of revolutionary information on the internet, there is also a lot of negativity and false information. Just as you may be able to find a community of people with whom you can relate to or read stories that provide you valuable insight and direction, you will also come across many trolls and horror stories that make your journey to finding a diagnosis feel dismal and hopeless. I fell victim to this negativity and it made my experience all the more difficult to cope with.
So when going down the internet rabbit hole, be careful. Take everything presented to you with a grain of salt. Embrace the positivity and ignore the crap.
An Inkling: When Everything Changed
It wasn’t until the summer after my illness set in—almost eight months—when I finally got an inkling of what may be happening to my body. Over the summer, I reconnected with an old friend. Upon hearing about my health, he recognized my symptoms as similar to those of Lyme disease. Years before, his sister had been treated for chronic Lyme disease. His whole family encouraged me to pursue Lyme disease as a potential diagnosis. Upon hearing about her story first hand, I became incredibly excited to find that my experience and progression of symptoms resonated. For the first time in months, I felt a sense of hope and envisioned a future where I had a chance of getting better.
From there I threw myself into learning everything I could about Lyme disease. I went down the rabbit hole researching the disease in depth and read books and blogs about other people’s experience with Lyme disease. In doing so, I had a gut feeling that Lyme disease was the answer I had searched so long for. I called the office of every Lyme doctor within a hundred mile proximity of me, eager to get an appointment with a Lyme disease expert as soon as possible.
Receiving a Diagnosis
August 2, 2017, ten months after falling ill, I finally received a diagnosis of Lyme disease, as well as two co-infections; Babesia (Babesiosis) and Bartonella (Bartonellosis). On that day, my life changed forever.
My first visit with a Lyme literate naturopathic doctor—who to this day still treats me—was one of the best days of my life. Leading up to the appointment, I was very nervous and anxious. I was worried it was going to be just as unsuccessful a visit as every previous appointment. I was worried she was not going to take me seriously and that she’d scoff at my suspicion of having Lyme disease. I was afraid to risk feeling devastated like I had so many times before.
Quite the opposite. I got very lucky that I found a competent doctor who was not only experienced with Lyme disease but who also had genuine intentions. I knew right off the bat that she was in her field for the right reasons and that she would stick with me through my illness. She was the first medical professional I met that I knew in my gut I could trust. She was also the first doctor who took the time to show my situation the care and thoroughness it needed. I encourage everyone to try to find a doctor who makes them feel the same way. A good doctor can make all the difference in the mentality with which you approach your illness. Do not settle for a doctor who does not provide you with a sense of hope and encouragement when you leave their office.
When she first told me my diagnosis, I was speechless. Not because I didn’t expect that I had Lyme, but because I didn’t believe that moment would ever come. I was so incredibly relieved to have been given a diagnosis—one that felt right. I felt like the ten months of hell I went through was at last validated.
My Introduction to Naturopathic Medicine
I believe it was a stroke of luck that I found the doctor I did. It was by complete chance that the first Lyme literate doctor who was available to see me was a naturopathic doctor. Having had very little exposure to alternative or nontraditional medicine, I went into my appointment with a lot of ignorance of what naturopathic medicine was. Up until that point, I only had experience with the mainstream, western medical system. I would have never thought to seek out something different than what I was used to.
Be it fate, luck, or the actions of a higher power—whatever brought me to naturopathic medicine was a lifesaver. I was enlightened to a whole sphere of medicine that would come to change my life forever; from the way I approached health, to making me a generally more open-minded and curious person. Being presented with a school of thought that was so different than what I was raised with challenged me to question and change other aspects of my life as well. It was the mentality and approach of naturopathic medicine that truly enabled me to receive effective and comprehensive treatment.
Now not to say that all aspects of “mainstream medicine” are bad or that more conventional doctors can’t successfully recognize and treat Lyme disease. I also do not think that every naturopathic doctor you meet will be a good doctor, and for some people, naturopathic medicine is not the right option. Just like anything in life, there is a lot of variation of skill, competency, and intention across all areas of medicine. Yet I found that naturopathic medicine and holistic health was the best approach for me to take toward handling my illness. To this day, I still see that same naturopathic doctor and, although I still have more progress to make to treat and manage my disease, I have had much success with her.
Naturopathic Medicine’s Approach to Diagnosis
Naturopathic medicine combines modern medicine and alternative methods to diagnose and treat both acute and chronic health conditions. It takes a holistic approach to diagnosis. One of the main flaws I’ve noticed in the mainstream American medical system is a focus addressing symptoms, rather than focusing on the root cause of an illness or health disorder. Naturopathic medicine subscribes to the mentality that, to rid the body of symptoms, first the root cause must be identified and treated. Through addressing the core cause of the problems, symptoms are gradually reduced and managed.
Given this mentality, diagnosis is key to effective naturopathic medicine. An illness needs to be properly diagnosed in order for the root cause to be treated effectively. Because of this, I believe that naturopathic doctors place more of an emphasis on the diagnosis process. My naturopathic doctor spent two hours with me during my first visit, meticulously going over every detail of my symptoms and medical history in order to be able to provide me with an accurate diagnosis.
The Importance of Lyme Literate Doctors in Diagnosing Lyme Disease
I will discuss more in detail about how to find the right doctor in another article, as it is a topic that truly deserves its own spotlight. For now, let me acknowledge the importance of Lyme literate doctors. I can not emphasize the value of their knowledge enough. Generally speaking, Lyme literate doctors are much more attuned and familiar with the behavior of Lyme disease and other tick-borne illnesses. They are able to recognize obscure symptoms that other unaware doctors may overlook. Because of this, they can often provide a clinical diagnosis—a diagnosis based on symptoms alone—which means that they are less susceptible to overlooking Lyme disease due to a false negative test result. They also usually are more knowledgeable about how to effectively treat Lyme disease and coinfections.
If you think you may have Lyme disease or any other tick-borne illness, even if you think the possibility is small, I highly recommend making an appointment with a Lyme Literate doctor! To find a Lyme specialist near you, check out ILADS’s provider search.
More Advice on Finding an Accurate Diagnosis
Whether you are suffering from an undiagnosed tick-borne illness like Lyme disease, or another chronic illness, the experience of searching for a diagnosis that explains and validates your illness can be very overwhelming and confusing. I hope that sharing my diagnosis experience helped provide some insight. Yet for more abstract advice from someone who has truly been through the wringer, I encourage you to read: How to Find a Diagnosis | Advice From Someone Living With Chronic Illness.
For those of you who made it through this long article…thank you. I hope you were able to take away something of value. Stay tuned for Part Five of my story in which I share about the process of treating and managing my Lyme disease.
Until then, much love!
Coming soon: My Journey to Finding Effective Lyme Disease Treatment | My Lyme Disease Story: Part Four