Lost in the Medical Shuffle

Lyme disease has been coined The Great Imitator. With its multitude of symptoms, spanning all organ systems in the body, Lyme disease is particularly difficult to diagnose.  Broad spectrum diseases, that are difficult to diagnose, leave patients circling the drain of ill health. Many are left bouncing around a medical system that focuses on specialties, while missing the forest for the trees. The covid pandemic, and the multitude of patients now suffering from long-covid, has brought to the surface what many Lyme patients have already experienced: getting lost in the medical shuffle. I will share a little of my experience lost in the shuffle.

My experience lost in the medical shuffle

My story begins at a very young age and spans three decades, so I’ll stick to the highlights…

Urinary tract infections

I was no more than five years old when I began having chronic, recurring urinary tract infections. My recollection is that no reason was determined for this rash of UTIs. What I do recall is the traumatic experience of having multiple cystoscopies at a young and vulnerable age of life.

Fatigue

By the age of nine, fatigue grabbed a hold of me with a strangle hold that only tightened with age. A multitude of tests were run for vitamin and mineral deficiencies as well as diabetes. No reason was ever determined for my growing sluggishness as such a young age and I simply learned to live with the exhaustion. By the time I was diagnosed with Lyme disease, slogging through daily fatigue had become my way of life.

Fibromyalgia and migraines

By the time I reached college I was experiencing crippling, migrating muscle pain. This served only to exacerbate my exhaustion. Around the age of nineteen I was diagnosed with fibromyalgia. For the first time in my life I had a name for my growing list of symptoms and misery. Albeit, this was most likely a misdiagnosis, but it was still reassuring. Someone had acknowledged my suffering and given it a name. I finally felt seen by the medical community. Unfortunately, it likely prolonged my true diagnosis, leaving the Lyme bacteria to proliferate for many years.

It is also during college when my aural migraines appeared as well. This symptom was shrugged off as the stress of college and never revisited until twenty years later.

Dizziness and brain fog

In my mid-twenties I had a bout of bizarre dizziness accompanied with brain fog. This was the scariest symptom yet that had me swimming in a sea of uncertainty and vulnerability. I was bounced from specialist to specialist to determine the cause…multiple sclerosis, a whole in my heart, an inner ear imbalance. You name it, I was tested for it. Again, no diagnosis was ever determined. After about three months, the dizziness subsided. It wouldn’t return again until my mid-thirties.

By my mid-thirties, the wheels really began to wobble and my body began to send out smoke signals. Memory loss, excruciating periods, vision problems, a tremor, difficulty with word recall, diarrhea, night sweats and frequent urination, just to name a few.

It’s worth mentioning that one of the main reasons my symptoms went undiagnosed for so long, and another serious repercussion of the medical shuffle, was because I didn’t have health insurance. I couldn’t afford it. But, I also couldn’t afford to go to the doctor without insurance. So, I ignored my symptoms and lived with the growing sense that something was really wrong with me.

For decades, the feeling that something was awry with my health hung over my head like an ominous storm. I would lay my head down to sleep at night and be gripped with fear that I may not wake up in the morning. By the time I was diagnosed with Lyme disease, at the age of 39, I had spent most of my life feeling unwell. Of the multitude of doctors I saw over the span of almost 40 years, not one of them had offered me a proper diagnosis. I felt like I was lost at sea, slowly drifting further and further away from the shore.

Exiting the American medical shuffle

By the time I stumbled into The Bridge Medical Center, I felt like a shell of the person I once was. My athletic dreams had long ago been dashed and forgotten. Incapable of holding down a full-time job, I was mentally demoralized and suffering financially. The medical shuffle had chewed me up and spit me out.

It was luck that landed me with a naturopathic, Lyme literate doctor.  I finally found someone who truly listened to me and who was well-educated in epidemiology. When I presented to my doctor with a string of seemingly unrelated symptoms, she immediately suspected Lyme disease. Her keen insight is also indicative of her naturopathic training, which allowed her to view my body as a whole instead of individual, unrelated organs. She could see the forest for the trees.

Naturopathy vs. Western Medicine

This is my take on why you should seek out a Lyme literate doctor. It lies in the way Lyme disease is treated. All due respect to the thousands of amazing doctors and nurses in this country, but Western medicine was the bane of my existence. Western medicine uses a reductionist approach to wellness while a naturopathic doctor is trained to look at the body as a whole. It has been my experience that they are learned in a multi-pronged approach to treatment and may be more willing to use alternative, and healthier, means to treat you.

Example of My Lyme Treatment Protocol

My doctor used both antibiotics, herbal medicines and tinctures throughout my convalescence. Some of the multitude of medicines my doctor used to treat me in addition to antibiotics are:

In addition, she recommended other alternative means for treatment including infrared sauna treatment, Epsom salt baths, skin brushing and essential oils. All through the process of ridding my body of bacteria, she regularly ran blood work and ultimately determined my adrenals weren’t functioning and that I wasn’t producing testosterone or progesterone, among other deficiencies. I took probiotics religiously in order to ensure I was protected from yeast overgrowth.

My treatment with my Lyme-literate doctor was comprehensive and she listened to what I was telling her. If a certain medicine wasn’t working, she would introduce a new one and we re-evaluate within a few weeks. These are just a few examples of the many ways my doctor treated all of me, not simply the bacterial infection. She treated my body as a whole, listened to me and respected me throughout the whole ordeal. I felt safe in her care.

Don’t get lost in the medical shuffle

The long and the short of it is, listen to your body. Listen to what your mind and your spirit are telling you. If something just doesn’t seem right, be your own health advocate. Do a little research and find a doctor who can treat you properly, with care and knowledge. Do not ignore your symptoms, I implore you. I ignored mine for far too long and got frustrated by feeling unheard. For decades, I knew deep in my core that something was wrong, yet I allowed myself to be silenced. In so doing, my treatment was likely much longer and more unbearable than it should have been, had I been properly diagnosed earlier. Don’t let the same thing happen to you.