Seven: Stumbling Through the Dark

When we last left this story, I had experienced some unusual symptoms six months after hospitalization for “suspected tick-borne illnesses.” The most serious were chronic fatigue, neuropathy in my hands and feet, loss of balance and difficulty walking.

Over the next year I would make multiple visits to my general practitioner (GP), a rheumatologist, a neurologist, a podiatrist, an immunologist, a Lyme Literate Medical Doctor (LLMD), and a “naturopath.”

For the sake of brevity, I will mention some common themes in this exasperating journey.

In my first visit to the GP, I explained my symptoms and asked if they might be related to Lyme Disease. His response was “There aren’t many cases of Lyme in Alabama.”

He ran some blood tests that revealed abnormalities, particularly a high Rheumatoid Factor (RF) which indicated inflammation. He suggested I was experiencing the onset of Rheumatoid arthritis and referred me to a local rheumatologist. I waited six weeks for the appointment.

I met with the rheumatologist and recounted my story about my declining health since my hospitalization for Lyme.

Had I been to Maine or Vermont? If not, it could not be Lyme-related because there was no Lyme Disease in Alabama.

My examination was a quick look at my hands. “You do not have arthritis. You should see a neurologist.”

I went back to the GP (a four-week wait). He took more blood and called the next day. I needed to come back in immediately. My blood protein levels indicated my kidneys might be failing.

The re-test was “normal.”

He referred me to the local neurologist. The first available appointment was in four months.

My son had recently seen a neurologist in another town. She was accepting new patients, so I called the GP and had the referral changed, and in two weeks I was in her office.

I explained the situation once again.

“Your symptoms are typically associated with diabetes, alcoholism, chemotherapy, heavy metal toxicity and some rare autoimmune diseases. Lyme disease is also on the list of potential causes, but there is no Lyme Disease in Alabama.”

She sent me down the hall to get an Electromyography (EMG) test. It would show I had bilateral peripheral neuropathy (carpal tunnel in both hands and tarsal tunnel in both feet). My nerves were not sending or receiving signals.

She suggested wrist splints, orthotics, and physical therapy. I objected. I wanted to know the cause. Carpal and tarsal tunnel syndrome repetitive motion injuries. And why both sides of my body? She ordered more blood tests.

A week later her nurse called. I had an abnormally high RF. She recommended I see a rheumatologist.

I made another appointment with the GP. Armed with The Book, the Redhead asked if there was any significance to consistently low globulin levels in all my blood tests. “Isn’t globulin related to the immune system?” He insisted that it was probably not relevant but that he would refer me to an immunologist.

I waited three weeks for that appointment. He ordered another blood test. He called two days later to ask me to come back for consultation.

My test indicated I had no immunity to respiratory infections. He could give me infusions to raise the levels of Immunoglobulin (Ig), but my insurance would not cover the costs ($5K) since I had no history of respiratory infections. He did not think my immune system problem had anything to do with my neurological symptoms, and even if they did the infusions would not be strong enough to help.

I then made an appointment with a “Lyme Literate Medical Doctor (LLMD).” These doctors fly “under the radar” because Lyme Disease is so controversial in the medical community. They do not advertise nor accept insurance (I will have more to say on this in a future post).

He examined me and told me my hospital treatment was insufficient. I had neurological Lyme and should expect to be on antibiotics for a minimum of six months. He ordered the “Western Blot Test” (which has less than 50% accuracy) and said he would contact me with the results.

He sent an email two weeks later. The test results were negative. He suggested that I see another doctor. He did not respond to further calls or emails.

At the urging of a friend, I went to see a naturopath. He asked about my history and symptoms and had me place my fingertips on a metallic disk. He explained that he could detect microbes and toxins that other doctors could not through electric currents that flowed across the skin. A few minutes later his computer spit out a report indicating I had a host of problems including an unhealthy digestive, Lyme Disease, heavy metal toxicity, and pesticide exposure.

He was also something of a bad fortune-teller. He foresaw me buying $750 worth of supplements to combat these illnesses from his store.

I made one last appeal to the GP. I asked to be referred to a neurologist at a research hospital.

Six weeks later I got a call from Emory University in Atlanta. The first available appointment was in January of 2024. After some groveling and begging my name was placed on a “cancellation list.”

A week later I got a call. “Can you be here tomorrow at 8:00?”

Finally, I was going to get some answers.