Tag: Lyme Disease

creative nonfiction, Life in Alabama, southern culture, southern writing

Ten: Full Circle

by rayclifton11 Comments on Ten: Full Circle

There is a philosophical principle from the 14th century that is often paraphrased “when faced with a problem, the simplest explanation is usually the best one.”

I have chronic Lyme Disease and coinfections. Since I had no neurological symptoms before I was hospitalized this is the simplest explanation. The course of antibiotics I received (which was less than even the most conservative doctors recommend) was not enough to eliminate all the bacteria.

I am sure that you have noticed that a recurring theme from my medical visits was “there is no Lyme disease in Alabama,” or “Neurological Lyme is very rare.” You may wonder, as I did initially, why a doctor would not just say “Lyme disease can cause the symptoms you are experiencing, so let’s explore it.”

After reading numerous books and hundreds of articles over the last two years, I think I can briefly answer that question.

First, most doctors have little training in the diagnosis of Lyme Disease and other tick-born illnesses. Lab testing for these bacteria is archaic and notoriously inaccurate. The most common tests detect antibodies in the bloodstream (an immune response), not bacteria. Such can be successful for diagnosing acute infections (as I had in the hospital), but less so for chronic infections due to a compromised immune system and the ability of these bacteria to “hide” in connective tissues and within cells. As a result, many people are misdiagnosed as having an autoimmune disease, or even worse labelled as having an “idiopathic illness.”

The second reason is that treatment for chronic cases is controversial. The Center for Disease Control and Prevention (CDC) and the American Medical Association (AMA) do not recognize the existence of chronic Lyme and therefore will not approve antibiotics for treatment. This creates a situation in which doctors are afraid they may lose their license if they make a diagnosis based on symptoms rather than a positive test.

The result of these two circumstances has created an industry of “specialists” who treat Lyme with long-term antibiotics and other therapies “under the radar.” They do not accept health insurance, which means that sufferers must pay thousands of dollars out-of-pocket for treatments and procedures that may or may not be effective.

Which brings me full circle in this tale.

After all my research I have decided to aggressively self-treat for a few months. This is why I chose to “semi-retire.” I knew this would require self-discipline of an almost religious fever and all my time and energy.

I will not bore you with all the details of my regimen. It involves a very strict anti-inflammatory diet, daily moderate exercise, adequate rest, and an herbal protocol developed by the late Stephen H. Buhner in his book Healing Lyme (Natural Healing of Lyme Borreliosis and the Coinfections Chlamydia and Spotted Fever Rickettsioses).

Will it work? I have no idea. But I can report that I am six weeks in and have made remarkable progress in alleviating many of my symptoms, including an astonishing improvement in my balance and ability to walk.

If it does not? Then I move on to the next thing on the Redhead’s list of “all the things.”

As I wrote in the beginning, this series of posts is intended to be a cautionary tale. Its ultimate purpose is to convince you to follow some simple precautions when you spend time in the woods (or even your backyard) in tick-infested areas.

I recommend you do the following (at a minimum):

Wear light-colored clothing so you can see ticks before they reach your skin.

Tuck your shirt into your pants and your pant legs inside your boots or socks.

Use tick-repellant spray.

And above all, check yourself carefully for tick bites when you undress.

Finally, if you are bitten, find a doctor who will prescribe 30 days of antibiotics. If they need convincing, tell them you know someone with Lyme and you want to be proactive.

Enjoy the great outdoors but stay healthy, dear reader.

We will now return to the blog about nothin’ in particular…

creative nonfiction, Life in Alabama, southern culture, southern writing

Seven: Stumbling Through the Dark

by rayclifton6 Comments on 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.

creative nonfiction, Life in Alabama, southern culture, southern writing

Six: The Descent

by rayclifton6 Comments on Six: The Descent

I reluctantly began this story several weeks ago here due to the urging of others. It is difficult because it is personal, and I have always guarded such things. If we met on the street today and you asked me how I was doing I would say “Pretty good” or “Fine, thanks.”

I continue the tale with the hope that it might be helpful to someone.

The next part of the story may seem incredulous. Let me frame it this way:

Have you ever gone for a time, say six months, and one day tried to put on a pair of jeans only to discover that they are too tight? You ask yourself, “Have I put on some weight?” You step on the scales and find that you have gained ten pounds. Your first thought is “How did that happen?”

The answer is gradually. My progression into chronic illness was the same.

In the weeks following hospitalization, I experienced some tingling and numbness in my feet. I began to stumble a little, and my gait became unsteady. Walking up or down stairs and on uneven surfaces became challenging. I would lose my balance but “catch” myself on a wall or a chair. It was not a matter of vertigo or “light headedness.”  It was strictly mechanical. It was hard to walk a straight line.

I also lost a lot of weight. Most of it was muscle. The clothes in my closet (my sizes had not changed since my twenties) were now way too large. Clown clothes.

I rationalized that these two conditions were linked. I was simply “out-of-shape.” Muscle atrophy from inactivity had affected my mobility, and I could get back to normal with disciplined exercise. I started lifting weights and felt better immediately, but after a few workouts I experienced complete fatigue. Though it was difficult to get out of bed, I had responsibilities — my family, my church, and my employer. I stopped and re-started the workouts several times, but the results were always the same.

Sometime later the Redhead and I were watching television one evening. She asked, “Why do you keep rubbing your hands?” I realized they too were numb. I really had not noticed before that moment because of the issues with my feet.

The numbness gradually worsened. Both hands and feet were numb during the day and throbbed at night. The Redhead told me I was “moaning” in my sleep.

Still, I let some time go by. Surely all this was simply connected to the Specialist’s “post viral syndrome” diagnosis.

Then I began to experience something the medical community calls “brain fog.” I lost track of things. Wallet. Phone. Keys. Forgot the names of people I had known for a long time. Stopped in mid-sentence because I could not remember a word.

I finally started to worry. I had waited long enough, and I had to find another doctor soon.

Thus began my search for answers in the modern medical system. It would drag on for over a year.

creative nonfiction, Life in Alabama, southern culture

Five: Diagnosis

by rayclifton5 Comments on Five: Diagnosis

This is part five of a series. If you are a new reader, you may want to start here and read from the beginning.

Two weeks can be a long time when you are waiting for test results.

I spent a lot of that time on the internet, researching Lyme Disease. I began with studies and recommended treatments from research institutions like Mayo Clinic, then worked my way through page after page of personal stories.

Lyme was controversial. Most medical sources maintained that it could be successfully treated and cured if diagnosed early, but there were huge differences in the meaning of the word “early.” There was even debate about the accuracy of the test (some said less than 50%) as well as the efficacy of various antibiotics and the length of time they should be administered. All the medical researchers agreed on one thing: 14 to 21 days was the minimum length of treatment. Some believed 30 days was best.

I had received eleven days of Doxycycline — four intravenous and seven orally. I had questions about that if the results were positive.

The day arrived and I met with the Infectious Disease expert. A surprise — I was positive for five illnesses: Lyme (Borrelia sp.), Rocky Mountain Spotted Fever (Rickettsia), HGE (Anaplasma phagocytophilum), HME (Ehrlichia chaffeensis) and Micro Pneumonia (M. pneumoniae).

The doctor said that he suspected Lyme all along, but that the high fever and brain swelling I had experienced was more consistent with Rocky Mountain Spotted Fever.

“That one is potentially fatal. Glad we caught it early.”

My thoughts, kept to myself:

Glad we caught it early? I lay ignored in your hospital for 24 hours with a high fever and did not get so much as Tylenol. If my son had not found me, I might have been dead.

You gave me a broad-spectrum antibiotic and ran some inconclusive tests. If the Redhead had not told you that about the tick, we would not be having this conversation. I would be just a patient you treated for a “fever of unknown origin.” 

I told him what I had read. I was concerned that my antibiotic treatment had not been long enough to kill the Lyme bacteria.

“Oh no. You had the standard treatment. I am quite sure we got it. I have treated Lyme before.”

I reminded him that I was a forester with a history of tick bites. Was it possible that I already had Lyme and the Rocky Mountain Spotted Fever only brought it to our attention?

“No, I do not think so. No worries. You should have no more issues.”

I would, however, experience a condition called “post viral fatigue syndrome.” I should expect to feel tired and just generally lousy for up to six months before I felt “normal” again. No cause for concern. I had been terribly ill, and my immune system had taken quite a shock. I should gradually begin to feel better if I rested and took care of myself.

Six months passed. I did not feel better. Some days I just wanted to stay in bed, but I waited.

After all, he was the expert.

creative nonfiction, Life in Alabama

Two: The Book

by rayclifton4 Comments on Two: The Book

The telling would not be possible without the book. A three-ring binder that serves as a sort of reference manual. Painstakingly assembled by the Redhead, a left-brained mathematical genius who can account for every penny on a balance sheet and has never met an equation she could not solve. Quite a catch for a right-brained word-man who can see the forest from the trees but cannot see the solution for the numbers.

The book is a chronological presentation of every medical visit, every test, every doctor’s summary, over the course of two years. There are spreadsheets she has constructed that compare blood test results by date for every component and how the numbers fluctuate – normal, abnormal, normal, abnormal – clues in search of a crime.

The analysis has been ignored or shrugged off by the medical community, most who seem to be more interested in moving things along so that they can get to the next beef in the slaughterhouse line. Let’s go folks, I have other patients to bill.

I offer this explanation to tell you how I know the order of events. Without the outline, the story is disjointed, the sequence and cadence lost. One of the effects of the illness has been a loss of short-term memory. Names and dates, mostly. I carry a little pocket-journal to help with that. Something a writer should do anyway. Stories and observations are often in the moment, and time blunts the imagery.

It is from this record that I know the exact date that this story began. How I can move from “Once upon a time” to June 5, 2021.

I had spent that week in the office, and a hot, lazy Saturday afternoon was just what the doctor ordered (no pun intended) for a forester and his dog. Just a short walk to a creek through a little patch of woods in Tallapoosa County, Alabama. The dog was protected from fleas and ticks. The forester, not.