My Lyme

On May 5, 2007, I was infected with the bacterium which causes Lyme disease. Denying it was a tick lodged in me, I told myself the ring of blood surrounding the body protruding from my neck was caused by my scratching what was really a little mole I had never noticed, and I ignored it. 

The onset of symptoms began a few weeks later with a marked change in temperament and sensitivity to sound. I took note of this after railing against a nun for chopping strawberries on a stone board, and berating her further for sprinkling them with sugar. 

By July, I wanted nothing more than to sit on the beach gazing blankly into the sky... and did little more than that. 

A month later I got sick.  Hardly able to raise myself from bed, I lay pondering where I could have caught the flu in August. The back of my neck felt as though struck with a lead pipe and my head ached, but in a few days I was ready to slink back to the beach.

Then appeared a red spot on my neck where the “mole” had been. 

Finally, it clicked.

My doctor prescribed a month of antibiotic and referred me to an infectious disease specialist. The infectious disease specialist recommended I complete the first doctor’s prescription and added another oral antibiotic of his own. 

Diagnosis: Lyme Encephalopathy   

Despite the antibiotics, I swiftly lost ground. The telephone rang and I stared wondering how to answer it. The traffic light would turn green and my foot did not move from the brake to the gas pedal but kept pumping the brake. Composing an e-mail of three sentences took 45 minutes, as I labored to figure the order in which to place the words, then to discern the right order for the statements.

My face felt like tiny threads were being twisted and dragged through it beneath the skin. My eyes would blur without warning and no amount of rubbing could retrieve my sight. My head rang incessantly. My skin could not be touched without feeling pain. Though tired, I could not sleep. Physically, I was exhausted. My face was sunken with deep black rings around my eyes, and I was less 20 pounds.   

On September 15, 2007, the memorial of Our Lady of Sorrows, a surgical nurse came to my home and inserted a port in my left arm through which to administer intravenous antibiotic daily for one month. With this came the issues of wrapping the arm in plastic every day so as to shower without contaminating the line, bleeding from the site at times, praying it would stop, admonitions from the infusion nurse, worry over losing the port, waking in the night fearful I had pulled it out in my sleep. Life was reduced to a hole in my arm in which I set all hope of becoming well.    

I began to improve only during the last week and felt I could benefit from another course of treatment since any sign of recovery had emerged so late in the protocol. My nurse agreed. My doctor did not.

The nurse hesitated to remove the line in my arm upon order to do so. We prayed the doctor would soon change his mind, since she could go only so long pretending she had never received his message. Days went by and my faith was tried each time the hour arrived and passed with no medicine to infuse. Praying the rosary, I asked Mary to tell Jesus that I had run out of medicine, as she had told Him of the wine at the wedding in Cana. 

Four days later my doctor called to order another 28 days of treatment. When I told him I didn’t need a new port, he was puzzled but it went without much further discussion. I had gone ten days shooting only saline. 

The eve of Thanksgiving, my nurse came to remove the line after I had administered the last dose. I was ready to be finished, well or not. The following day I knelt before a shrine to Our Lady to pray a rosary of thanksgiving. She had mothered and nursed me through this period in my illness in so many ways, but especially in regard to the port and what came through it.

In December I began to experience difficulty breathing. There was no congestion to speak of, yet my sinuses were not letting me breathe. After a few trips to the primary care doctor with no improvement, I found a general practitioner who specializes in treating Lyme patients. A thorough examination of my blood revealed a Rocky Mountain Fever co-infection.

I resumed a course of oral antibiotics, cycling through various types over the years until finding the best one for me. With long-term use of these drugs have arisen consequent afflictions, countered by alterations in diet and supplement intake. Throughout the life of the disease in me, most notably was a spell two years into the illness when my legs had become so weak that I could not raise them high enough to climb stairs without tripping, even though I had consistently trod a mill from the time of infusions to help circulate the drug and stimulate the immune system. Physical therapy and additional exercise helped strengthen me enough to get through that.  

Also, my eyes cracked. Yes, literally, like cracked pavement, my ophthalmologist said. I recalled descriptions of Saint Francis’ eye troubles, feeling as though his eyes were filled with shards of glass, and realized I was well on my way to sharing his plight, but Restasis has spared me that cross.      

Otherwise, my ears remain ringing, my muscles twitch, there are headaches, sound and photosensitivity, and now that I am not constantly on the medicine, there are times when spirochete life-cycling in me becomes too much for my immune system to manage and I’m overcome with physical exhaustion and cognitive impairment. Resuming medication causes a Herxheimer reaction whereby my head feels it may explode from the swelling between my brain and my skull, but ultimately, it seems to beat the flourish enough to restore balance so my immune system can cope on its own until next time. 

In the meanwhile, I’m still pretty frail and easily fatigued. I’ve regained ten pounds and I look deceptively healthy much of the time. My doctor assures me that as long as he’s alive he will not let me regress to where I began.

+

Since originally writing this page back in April there has been a significant change in my treatment protocol. During the summer it was decided that I would go without medication at the onset of symptoms and persist for three weeks with no antibiotics to see how my immune system would respond. If it was not recovering me after three weeks of illness, I would resume medication. I was warned in advance it would be unpleasant at best... I think "it's going to stink" were the doctor's words... and it did. But, as he predicted, my immune system rallied and won the battle. It took about a month to go through the entire cycle of getting progressively sicker to the point where I then noticed a sharp turn toward wellness. The recovery period lasted much longer than the getting sick period. 

Because I knew the date I was infected, and was advised from the outset of treatment to keep a good record of symptoms and changes, I've been able to chart the life-cycling of the bacteria in me to gain a sense of when I may be susceptible to experiencing symptoms. This data led me to believe that I would be getting hit with illness again about a week after my recovery from the bout I just mentioned, for according to my data, the above incident was an anomaly. The doc ventured the germ might have taken a whole new tack and the cycling would be adjusted to the anomaly... but this time, he was wrong.

So, I was hit again a week after recovering the status I had "enjoyed" prior to the rogue outbreak. Yet the bout was less severe, and the immune system responded sooner, which he said would be the case. However, the recovery period was more severe in terms of pain and swelling, and lasted a few weeks. 

In the midst of all this observation and warfare, I am managing to move forward and gain ground, I think, with regard to resuming where I left off in the course of my life when I fell ill over four years ago. This means I'm deep in discernment and prayer for the future...

[Added October 9, 2011]