FROM THE CABIN

A Tick-borne Journey

by Lucy Leaf

Oh darn, it’s a tick! And it is latched firmly on my backside, just beyond where I can see it. In earlier years, I would just pull it off gently, careful to get the whole tick. And then I would forget about it.

But today, I must fish out the “tick tweezers” to avoid injecting toxins into my bloodstream during the removal process. I need to notice how firmly the tick is attached and how heavily gorged it is with my blood. And then I need to identify it. Why all this fuss? Because I’ve heard about Lyme disease.

The tick is a quarter inch long and has a big white shield on its back. I’m in luck. It’s clearly not a deer tick, the carrier of Lyme. It’s the common dog tick, also called a wood tick, I read online, and though it can carry a host of other infections, the incidence is extremely low, especially here in Maine. I decide that none of that is going to apply to me.

I completely forget about a tick bite and get on with the business of preparing for a very long hike. There is a lot to do because I am closing the door to my cabin indefinitely. This walk is to be open-ended, wherever my feet take me. I could be gone a year, two, maybe three. The cabin will be there for a respite, if I need it. I plant the garden anyway, for other family members to enjoy.

Three days later and close to departure, I wonder why my butt is sore. Darn, it’s that tick bite, and with a mirror I see redness five inches across. I’m back to the computer. The Centers for Disease Control indicate specifically that dog ticks are not carriers of Lyme, and that is good enough for me. However, the expanded redness is an indication that I should definitely see a doctor.

Well, I don’t have a doctor, or health insurance, or any desire for any health care plan that is driven by profit. I haven’t had any flu-like symptoms and the redness is not the classic “bulls-eye” pattern. I’m in good health. My body can handle this.

The redness increases. The soreness increases. The site is warm, hot actually.

How would indigenous people treat this, I wonder. There is comfrey in my herb garden and plantain growing alongside the path to the cabin. They both draw out infection, I’ve read, and reduce inflammation. I soak them in warm water, make a poultice and apply it the best I can.

Days later, things are worse. It’s now hard to sit. Doggone. I now have pain with every step. The redness extends to 10 inches in diameter. Not good.

It’s time to find a doctor in the yellow pages. The doctor is very nice. He tells me I will likely be fine – exactly what I want to hear. I leave the office with antibiotics for the local infection and a computer print-out corroborating everything I have already read about tick bites. “The risk of acquiring Lyme disease from an observed tick bite is only 1.2 to 1.4 percent, even in an area where the disease is common.” Even if it was a deer tick, even if it was infected, even if I did get Lyme, a two to three week course of antibiotics should take care of it. Nothing to worry about, I figure.

Within three days, all signs of infection are gone, but I postpone my trip another week while I finish the medication, just to be sure.

Two weeks into my journey, I have hiked across Maine and am fit enough to begin a section of the Appalachian Trail. But a sciatica-like pain has emerged in my left leg, keeping me awake at night. It’s relentless and unresponsive to a maximum dose of Ibuprofen. There are strange stabs of pain in my back, also on the left side. It might be my imagination, but it all seems to emanate from the tick bite.

I hitch-hike home and return to the doctor, expecting that I will be back on the trail in no time. Steroids and a mild narcotic provide relief, but my condition worsens, the pain spreading across my back. Numbness follows. I tell the doctor I’ve had nothing like this before.

The doctor suspects a back problem and wants to proceed with an MRI. This is way beyond my means so I will simply wait and see what happens. I end up in the emergency room. Twice.

I mention a tick bite. “But it wasn’t a deer tick,” I explain. Tears flow. I feel frazzled, dependent now on a narcotic patch added to the pills, all producing side effects for which I need more pills. What is happening to me, I wonder.

A Lyme test is done. A week later it returns positive. I’m perplexed but also greatly relieved. The three-week course of doxycycline is started and I am sure I will be back on the trail soon.

Instead, I feel worse. I have lost all appetite. Deep sleep is a memory. My energy is gone. Walking 100 feet to my garden, I must sit down and rest. I nibble on lettuce leaves and unwashed carrots like a rabbit. Preparing a salad is beyond my endurance. Food tastes strange, and I eat only because I have to. I am very sick, and worried. I see several doctors now in a family practice, but there are no explanations. I feel like a “problem” patient.

Reading is difficult, online work impossible. The pain has spread through my entire torso and no position is comfortable. My back feels like I’m lying on a bed of nettles, though it is numb at the same time. The antibiotic treatment extends to four weeks, then six. I am so devoid of energy that I actually black out and crash to the floor. I must heed the warning signs.

Slowly the pain begins to subside and I’m eager to stop pain medication. But now I have another problem: withdrawal from the narcotics I’ve been on for almost two months. At three in the morning, I’m pacing the dew covered field in front of the cabin, exhausted but unable to remain still. I enter another zone where day and night merge and I look to the sky for help.

Finally, I am better, but not symptom-free. It is now September and I am about to be referred to a specialist for infectious diseases. I am now classified as “Post-Lyme” which means I have received the standard treatment for Lyme disease which is supposed to eradicate it. Therefore, whatever is wrong with me now is no longer Lyme disease. Now I am really worried.

I can sit in a chair now for more than five minutes and have begun to read and research everything I can find about tick bites. I learn there is a local support group for people with Lyme. Going to it, I see a dozen people who have been dealing with Lyme for years, as long as 20 years for some. One entire family of four was affected. Most had the symptoms long before they were diagnosed with Lyme, receiving a gamut of ineffective treatments including psychiatric hospitalization. Careers had been lost, education interrupted, dreams abandoned. I am beginning to think I should be more proactive in my treatment.

Most of the people in the support group go out-of-state for their treatment, as far as New York. I must find a “Lyme-literate” doctor, I am advised, one who acknowledges the severity of the condition and will treat accordingly. I am given the names of books and websites to read and doctors I can contact. It might take months to get an appointment. The doctors are expensive, I am warned, and do not accept insurance. Insurance companies refuse treatment for a condition that is deemed not to exist. My education begins.

Extended antibiotics are the required treatment, often administered intravenously. This is very controversial, I read, due to resistance buildup which becomes a public health issue. Longterm antibiotic treatment carries many risks to the individual as well, but for those whose lives are in ruin, the risk is worth it.

Just how debilitating can Lyme be, I wonder. All I ever heard about was joint pain. I watch an award winning documentary called “Under Our Skin, the Untold Story of Lyme Disease” which shows just how bad it can be. Lyme is the “great imitator,” often misdiagnosed and treated as other serious conditions. It mimics and can lead to MS, ALS, Parkinson’s disease, and Alzheimer’s. Post-Lyme is often reclassified as fibromyalgia, chronic fatigue syndrome, rheumatoid arthritis, and various psychiatric conditions. Lyme and its co-infections can spread to and affect every organ and system of the body. People die from Lyme disease.

There is also an explanation for why I got sicker once I started the antibiotic treatment. The “die-off” of the infecting bacteria produces toxic effects. The severity of my reaction is an indication of a virulent infection, and I learn that doxycycline can slow an infection that has already disseminated, but rarely prevents it from spreading further. It’s clear to me that I need to seek expert help if I want to prevent a chronic condition.

Lyme, I discover, is also a political hot potato. There is controversy around every aspect of tickborne disease, from definition to detection to treatment. Lyme tests are inaccurate and often inconclusive. Doctors who accept difficult Lyme cases often risk losing their medical licenses. Several have been driven out of practice.

I call two out-of-state doctors who also have training in naturopathy, receiving a brief consultation with each. Both state the need for further immediate treatment. Both use antibiotics in their treatment, and one has a private clinic for IV administration. I shudder and begin to feel somewhat desperate.

My friends still think I am on a long hike, and finally I email to tell them I have been on my bed most of the summer. This is where I learn how many people have Lyme. Most everyone I talk to knows of someone who is dealing with Lyme disease. It looks like an epidemic to me, and indeed it is, I hear in the video, far surpassing West Nile virus or AIDS.

Then an email arrives, from a friend who is a Maine Guide. She knows a person who recovered from Lyme, a wilderness instructor who landed in the emergency room as I did with unmanageable pain. This gal, in her early twenties, lost two years of work where she was severely depleted of energy, repeatedly misdiagnosed, and accused of malingering under conventional treatment.

Her doc is a naturopath who has treated Lyme successfully for several years and to my amazement he is located in southern Maine. His wife, a medical doctor, had Lyme, losing three years of practice, before they found effective treatment through modern Chinese medicine. She could not add two plus two, suffering from the classic “brain fog” many patients describe, along with anxiety and paranoia so severe she could not leave her house. She is now back in practice, “cured,” she believes, of Lyme.

I am lucky to fill a cancellation, and head for southern Maine. It is utter relief to talk with someone who understands the complexity and severity of tick-borne disease, and I am equally relieved that I have a good chance of total recovery. But it will take at least six months on a regiment of pathogen-killing herbs along with herbs that will boost my immune system and remove the toxicity.

I’m amazed that herbs can kill pathogens, with little or no side effects. And I understand that my immune system needs rebuilding, compromised early on by steroids and anti-inflammatory medications. Moreover, I learn that any tick can cause Lyme disease, not just the deer tick. And the co-infections are just as serious. I gulp at the cost of the prescribed treatment, but decide ...

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