Tag: tick-bourne illness

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

Nine: All the Things

by rayclifton6 Comments on Nine: All the Things

*This post is part of a series. If you are new to the story begin here.

I had been sick for two years. Bounced from doctor to doctor with lengthy periods of waiting in between. I was looking for a diagnosis, and confident that my young doctor at Emory was the one who would finally get me back on a path to health. She had ordered “special tests,” and I only needed to wait two more weeks for the answer.

Actually, I saw no reason to wait until the appointment.

All the prior doctors had “patient portals.” These are internet sites through which you can access your medical records – appointments, lists of medications, test results, and messages. It is where the Redhead accumulated all the information that was in The Book.

Over the next three days, I received an email notification from Emory each time a new entry appeared in my medical record. These were the tests and the results. I was unfamiliar with most of them. Names like “Free Light Chains” and “Protein Electrophoresis.”

One addition to the Emory reporting system was an exclamation point (!) beside the test if the results were abnormal.

There were six tests – four had exclamation points.

I did not know what any of it meant, but I knew who did. I consulted “Dr. Google.”

Dr. Google had bad news. There were two likelihoods: multiple myeloma (a type of white blood cell cancer originating in the bone marrow), or a rare genetic condition called amyloidosis. Neither was good. My future included bone marrow biopsies and chemotherapy. Waitin’ around to die type stuff.

I got a second opinion from Dr. YouTube, who concurred.

I know it may sound hard to believe, but I was not devastated by the news. I was more stoic. In some strange way I was relieved that I had an illness with a treatment. When you are sick for a while, especially undiagnosed, you begin to think you might be crazy, and you are quite sure that others think you are.

The terrible thing about this experience was that I knew the Redhead was on her laptop across the room every night, conducting the same internet investigation.

One night I finally broached the subject.

“You know I have multiple myeloma, right?” I have never been one to beat around the bushes.

She began to cry.

“Hey,” I said. “It’s okay. We will get through this. I am strong.”

“I am glad to hear you say that, because I am going to need you to be.”

And that was that.

Another week passed and we made the trip back to Atlanta. We did not go straight to see the doctor but instead went to an exam room to get another Electromyography (EMG) test. This was a repeat of an earlier exam by another neurologist to determine if my neuropathy was progressing.

After a brief wait, the doctor came in with her intern in tow.

“Sir, the good news is that your neuropathy is not progressing. I have run all the tests that we have at our disposal, and I am sorry to say that your case is idiopathic. I simply cannot find an explanation.”

“You mean I don’t have multiple myeloma or amyloidosis?”

“No, no! Some of your test results were a little high, but nothing like we would expect to see with either of those conditions.”

I felt like all the air had gone out of the room. I was relieved – but stunned.

“So, what is next?”

“It is hard to say. You have some inflammation somewhere in your body which indicates some sort of autoimmune disorder. All we can do is try and manage your symptoms. I will give you some medication for your nerve pain and we will go from there. Sometimes cases like yours resolve themselves. It could be six months, a year, or a decade, but your symptoms may go away on their own. I am going to schedule an appointment to see you again in one year. In the meantime, call me if your nerve pain worsens. We may have to try several medications before we find one that works for you.”

We were quiet for a while on the ride home.

“Well, I guess we’re at the end of the line.”

“No,” she said.

“We have seen everyone I know to see and done everything we know to do. What else is there?”

“All the things,” she said. “We are going to try all the things.”

creative nonfiction, Life in Alabama, nonfiction

Eight: Southern Hospitality

by rayclifton2 Comments on Eight: Southern Hospitality

I had lofty expectations for Emory.

I thought a medical school and research hospital must surely be the kind of place where collaboration and innovation were commonplace. I imagined doctors and professors in the cafeteria having coffee and discussing their days. One doctor would say, “I had this unusual case yesterday. The patient was bit by a tick and now he has forgotten how to walk,” and another doctor would say, “Wait a minute, I read about a case like that in Zimbabwe in 2011. We may have Patient Zero! Get him back in here. I will list you as co-author on the article I will write for Neurology Today.”

My experience was only a little like that.

The first neurologist I saw was an attractive middle-aged Columbian woman who spoke the King’s in the manner of someone who learned the language classically rather than through Rosetta Stone. She spent an hour with me going through The Book, asking questions about this test or that. She and the Redhead discussed anomalies and their pertinence to a diagnosis.  

She spent a lot of time looking at the Electromyography (EMG) test results. She checked my reflexes with a small rubber hammer and an instrument that looked like a tuning fork and stuck me with a needle at various points on my feet and hands.

“Do you feel this? This? How about now?”

She looked thoughtful for a moment. “You have ‘glove and boot’ neuropathy. It is not the classic manifestation of carpal or tarsal tunnel. The nerves are not conducting above the typical compression points. This EMG report and diagnosis is not altogether accurate.”

We went down the “cause” list as I had done with all the others. No diabetes, alcoholism, heavy metals, pesticide exposure or family history of autoimmune disease?

I asked if it could be Lyme Disease, since all my symptoms originated after hospitalization.

“Neurological Lyme Disease is very rare in Georgia.”

I let it go.

I asked if I was going to get worse.

“It is difficult to say. I am going to refer you to one of my colleagues who specializes in neuro-muscular medicine. She will want to repeat your EMG and run some additional blood tests to make a diagnosis.”

We returned two weeks later.

This doctor was a young Ecuadorian. She brought along another young resident doctor, and we spent well over an hour rehashing my history.

She asked some questions that none of the other doctors had.

“Do you have dry mouth?”

Yes.

“Digestive issues?”

Yes.

“Do you perspire normally?”

No, I meant to mention that. I have always been a heavy sweater, but now I never break a sweat, even during a hard workout at the gym or being outside.

She and the resident exchanged glances.

“Interesting.”

We ran down the list of causes of neuropathy again.

She sighed. “Sir, you need to understand that 20-30% of all cases of peripheral neuropathy are idiopathic. Do you know what this word means?”

I said I was fairly sure that it meant the doctor either was not clever or caring enough to figure out a diagnosis. That was why I was at Emory, and why I was so happy that she was my doctor.

I think she smiled behind that Covid mask. At least her eyes smiled.

“I am going to run some extremely specific blood tests, including a genetic profile that may reveal a few rare mutations that can cause symptoms like yours. We will repeat the EMG test when you come back to see if there has been any progression in damage to the nerve function.”

She walked us to the front and told the receptionist to make me an appointment in two weeks. She patted my shoulder and winked. “See you again soon.”

I was hopeful. She was the one. We would only have to wait two more weeks to finally get the answer.

I did not realize that it would be the longest two weeks of the two-year ordeal.

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.