Vermont Lyme Network
Our stories: Dayle Ann
It turned out to be Lyme Disease...
For the past several years I have kept an evolving essay about living with an illness first diagnosed as mono, though a progression of diagnoses, and then, in 1996, as Chronic Fatigue Syndrome with Fibromyalgia. For years I was treated for the symptoms of that disorder. But that is not what I had.
How it began... late 80's and early 90s
I lived at the south end of Puget Sound, in Washington State. I believe that it was late in 1986 or 1987 that I was bitten by a tick, something I didn't think much about at the time-- and didn't think about at all for many years. I didn't connect it with the headaches and periods of fatigue I began experiencing.
In early 1988, I came down with a drop-dead flu, one I could not come out of. My doctor told me that I had Mono, and did only a complete blood count (normal) and a test for the virus that causes mono (negative), plus a few routine tests for thyroid and blood sugar, none of which showed anything.
Fatigued, I struggled to continue working. I had just started my first regular job after graduate school, and could not take time off. This was my dream: my children were all college and high-school age, and now I was embarking on the professional career I had worked toward for years.
That summer, I developed Bell's Palsy, paralysis of one side of my face. It went away over the next two months, but I began to have vision problems, swollen joints, random pain, excruciating headaches that went down my spine and caused my back to spasm. I felt overwhelmed. I had difficulty sleeping, and my sheets were drenched with sweat.
I sought help from my doctor, but she, like most physicians, was unable to recognize that the symptoms I came to her with, put together, were typical of disseminated Lyme Disease. She treated them as unassociated complaints, and me as if I were a neurotic woman approaching menopause. Lyme Disease was considered to be strictly an east coast problem. Nobody even mentioned it.
Though I loved my work, and was successful in my job, I finally quit in 1994, thinking my problems were due to the stress of working in a very large and dysfunctional state agency. My social life was long gone, abandoned as I struggled to keep working. Yet, in the past, I had always been able to handle stress easily, and was known for my calmness in difficult situations.
I took what I thought would be a less stressful job for a small agency in another state-- and in the process lost all the benefits that would have helped me had I known I had Lyme. And still I struggled, as I watched my life fall apart.
Losing myself... 1994- 1999
Though I was able to continue working at various jobs, and often did well, I used leave time as fast as I acquired it, and began making baffling mistakes. I could not understand what was happening to me: I thought I was losing my mind. And, in a sense, I was, as the organisms that cause Lyme Disease worked their way deeper into my central nervous system, releasing neurotoxins that disrupted almost every function that my brain and nervous system controlled-- information processing, immune system, memory, coordination, hormone balance.
Doctors labeled me with depression, hypochondria, somatoform disorder. As it became clear that I was ill, the answers I got were variations of "I know you are sick, but I don't know what it is". Almost every doctor started out assuming I had multiple sclerosis, and then was baffled because the diagnosis didn't fit. I was finally diagnosed with Chronic Fatigue Syndrome with Fibromyalgia. It wasn't that my doctors didn't care: they just didn't know what they were looking at.
In 1998, I was fired from a job I loved, because I simply couldn't function under the stress it caused. Grieving for my lost career, I applied for Social Security disability. (My application was accepted without challenge.)
I was in the midst of a crash so severe that I began to be unable to do the ordinary tasks of shopping, cleaning house, preparing meals. Eventually I began to lose my ability to take care of myself. I was in continuous, acute pain, could not tolerate touch, sound, bright light, loud or repetitive sound. I suffered from intense headaches, stiff neck, inexplicable random joint swelling and pain, auras like those that often precede seizures. I began having absence and partial seizures, and unexplainable twitching and spasms, intestinal and bladder problems. I had repeated injuries due to chronic tendonitis.
Watching tv was impossible-- I could not put together what was happening on the screen. Any distraction disrupted my concentration, so conversations became an ordeal. Listening to music was a confusing jumble of sound, though I could follow radio news and documentaries for short periods. I could read only things with simple plots or premises. Remembering them was another matter! My short-term memory was tenuous at best, and I struggled to remember meanings of words. Eventually, I could only look at photos in magazines.
Even being in a room with more than one other person was difficult. I lost track of what I was doing, or even thinking. My mind felt wrapped in a thick fog. I had no energy, and was fatigued by both physical and mental effort, despite my continuing efforts to maintain my strength and stamina, and to stay involved in my community. Any kind of stress, good or bad, resulted in my having to seclude myself.
I scarcely recognized the face I saw in the mirror. She didn't look like the me I remembered.
An unwilling recluse... the new millenium
I spent the passing of the millenium sequestered in a dark loft room at the home of one of my daughters.
This was what I had become. An unwilling recluse. Me-- goofy, extroverted, physically active, respected and successful in my profession. I'd lost contact with nearly everyone and everything I knew. Only a few caring friends and family members kept me from becoming homeless. I bless them with all my heart. Eventually, in the spring of 2000, I moved to Vermont to live with another of my daughters and her family.
Suspecting Lyme...2000- 2002
I kept struggling to understand what was happening to me. As I got worse, I began to suspect that I did not have CFS, but the doctors I saw could find nothing, despite hundreds of tests and two MRIs. Finally, I met a friend of a friend, a man who had just begun treatment for early Lyme Disease. Curious, I asked him about his experience. His answer left me stunned-- it mirrored almost exactly what I had experienced at the beginning of my ordeal. I remembered that tick. Through my brainfog, I began to slowly research Lyme Disease.
I learned that every one of my symptoms, including some things I had not thought to connect with my illness, could be caused by Borrelia Burgdorferi, the spirochete organism that causes Lyme Disease. Symptoms are caused not only by the infection, but by the release of neurotoxins from both living and dying organisms that cause the infection. This helps explain the broad-ranging, random nature of many of the symptoms.
Once I became eligible for Medicare, I started looking for a doctor who would evaluate me for Lyme disease. It took months before I was able to find someone to take me seriously. Even in Vermont, surrounded by states with the highest incidence of Lyme on the continent, the ignorance about Lyme disease in the medical community is astounding. It amounts to actual denial. Finally, I found a nurse practitioner who was willing to evaluate my symptoms, and send blood samples to the lab I specified, rather than the standard lab used throughout Vermont.
It is confirmed: I have Lyme!
In early 2002, both clinical diagnosis and lab tests showed that I have Lyme Disease. Long-term, untreated Lyme Disease with neurological involvement. Neuroborreliosis is the technical name for what I have. That means that my brain and nervous system was infected with Borrelia burgdorferi, along with many other organs throughout my body.
I cried when my test results came back: both from relief at having what I suspected confirmed, and at the knowledge that I had now to face the challenges of treatment. The first of my challenges was to simply locate a physician willing to treat chronic Lyme Disease in the aggressive way necessary to control it.
I selected one a few hours drive away, in New York's Hudson Valley, and heart in throat, made an appointment. I saw him at the end of March-- and my life began to change.
At my first appointment, I had the most thorough physical examination of my life since I was carrying my children. My new doctor told me that I would get my life back. I frankly did not believe him. I just wanted not to get worse.
Ups and downs of treatment... 2002
I began my treatment in April, 2002. It involved a combination of antibiotics, herbs, meditation, physical therapy, and nutrition. Every month I traveled four hours each way (longer with the necessary rest stops) to see my physician. At first my daughter drove me. It was worth every minute of travel.
For me, the first months were a roller-coaster of symptoms. Not only do dying disease organisms break down into waste products faster than the body can dispose of them, they also release a sudden burst of neurotoxins, often in larger amounts than during the illness. For many patients, this results in an exaggerated increase in symptoms, called a "Jarisch-Herxheimer reaction", known as a "herx" for short.
The increase in symptoms is usually temporary but unnerving. Herxes are often cyclical, as they have been for me. At first, I felt frightened,, because it felt like I was going backward instead of forward.
But as the months passed, the herxes decreased in intensity, the days between got better, my pain disappeared, other symptoms lessened then abated, and I found myself gradually turning back into myself. Physical therapy helped me regain lost function from damaged tendons, build muscle strength and tone, and begin to rebuild stamina. I began to be able to remember things, then to read again.
But it wasn't only Lyme....
It is common for someone with Lyme to have other tick-borne diseases too. Ticks that carry Lyme also carry other diseases as well.
Tests showed that I had a mild erlichiosis, which responds rapidly to the same antibiotics used for Lyme. But that is not all. Though the tests for Bartonella were negative, my doctor suspected that I had it, based on symptoms that did not respond to the treatment for Lyme. These symptoms are typical of the chronic form of Bartonella: headache, facial parasthesias, vision disturbances, skin eruptions, fatigue, brain disturbances. The west coast has a high incidence of Bartonella: so common that many housecats carry it.
When I was treated for Bartonella, I began to feel that I was truly recovering. The difference was like opening a door into the sun.
The miracle of recovery...
The miracle I never expected began to happen: I am regaining my life. I went from having been increasingly bedridden and dependant on my daughter, my brain often struggling to comprehend what was going on around me-- to being active every day, to learn new things, to experience the world around me.
Gradually, I began to participate in community activities, go on outings, visit friends, do housework, go shopping. In January of 2003, I began working part-time in a back-to-work program. It was not the level of work I used to do, but it was another step back into the world. Best of all, my family rejoiced at having me back as mom and grandmom.
I am one of the lucky ones: for as ill as I was and for as long, I responded unusually well and rapidly to treatment, with few complications. I had been on antibiotic treatment for just under a year and a half. I was nervous about ending treatment-- there is the unanswerable question "Will I relapse". There is simply no way to know if there are colonies of dormant Lyme waiting for an opportunity to emerge. With long-term Lyme it is nearly certain there are, and stress often allows them another foothold.
In March of 2004, I bought a small house of my own, a fixer-upper I was able to buy with money left over from the sale of my former home years ago. Two months later I moved in, after a new roof, new wiring, new plumbing, and a lot of cleanup. And that fall I went to the west coast for several weeks to visit relatives I hadn't seen for years-- including a new grandchild for the first time, and two I'd only seen when I was too sick to be a grammy to them.
Relapse-- and more recovery
That fall, after the stress of buying my house, dealing with contractors, moving, and my trip west, I began to feel tired. Some symptoms made a reappearance. But I talked myself into believing that I just needed to rest after all the activity of the spring and summer. But by winter, it was clear that I was relapsing: I could not get untired, and I was in pain and beginning to struggle. My doctor called me on my denial. He doctor put me back on a different combination of antibiotics, and was adamant that I start taking some supplements to help rebuild my immune system.
I felt as if I'd failed. I was upset and depressed. I was scared.
But my doctor explained that when this happens, it means more colonies will be eradicated, giving my body that much less to contend with. Each time, my immune system grows stronger, and my functional baseline will get higher. Eventually my body will be able to keep the disease in check on its own. His explanation helped me regain faith in my body's ability to resist this disease and remain healthy. And he was right: within a couple of months, I was functioning far better than I had before, and getting stronger.
It's spring of 2005, and I am about to go off antibiotics again. I have been symptom free for almost two months.
In many ways, my life is near normal. I still work part-time (and for a very low wage), but I am now doing professional work similar to the kind of work I had done before Lyme took it away from me. And loving it. The challenge has helped my brain recreate many lost connections: I feel my intellect and skills re-emerging. The face in the mirror is me again.
I am excited and looking forward to my life, a life I didn't have three years ago. In spite of the setback, healing continues to take place, and my ability to function keeps improving. Though I still must be watchful of my energy level, I am able to be much more active than I was. This time I have a better sense of what to look for, and if symptoms reappear, I'll go back on treatment.
Learning that I have Lyme Disease changed a lot of things in my life. It meant that instead of passively treating symptoms of an unknown cause, I could be aggressively treated for the diseases that were the underlying cause of my illness. It means once again redefining who I am, and it means, too, letting myself grieve for losing a part of my life I might not have lost, had I been appropriately diagnosed and treated in the early stages of Lyme Disease.
Recovery opens up a whole new future for me, one I welcome eagerly. I don't know yet how much of my life will return to normal, but I am no longer that unwilling recluse. I am once again a part of a community and of my family, and an active participant in my own life. I celebrate that.
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