Nancy S's Story
I FEEL THE PAIN...by Nancy Seppala
I have Chronic Neurological Lyme Disease, becoming infected in May 1991 during a fishing trip with my family, in the Boundary Waters of the Superior National Forest in Northern Minnesota. I have been disabled and unable to work since 9/93.1 have been hospitalized numerous times, the last for heart irregularities.
It has been determined that this disease has traveled to my Central Nervous System, which has been difficult to treat. Historically I've relapsed every 1-2 months, even while on antibiotics, so then I was changed to a different set of antibiotics. One antibiotic was never enough. I had no idea that my life was about to take a tragic turn, when I took off my boots and socks, to dry them, while I stretched out on the lake shore, to take a short nap.
The quiet, idyllic setting I enjoyed that day was, at that very moment, changing while a deer tick was attaching itself to the inside of my left ankle.
In 1991, when I returned to San Diego from Minnesota, I began experiencing numerous strange symptoms, including, a red infected spot on the inside of my left ankle, gradual radiating rash up my leg, flu-like symptoms, and very painful knees. After some delay, because neither myself, nor my Doctor, knew much about Lyme Disease, my blood was tested.
The blood test was negative but my Doctor decided to treat me with Vibramycin lOOmg cap. for 10 days as a precautionary measure, for whatever I was experiencing. My symptoms quickly subsided, and I assumed I was cured. In the fall of 1991, approximately 6 months after this treatment, I began experiencing one of many episodes of rash on my right arm, neck, and face.
This rash would appear and disappear, with each episode worse than the last. Pustules developed on my arm, which required gauze wrapping so they wouldn't weep on my clothing. I began making frequent trips to my Doctor, looking for some explanation for what was happening to me. Eventually, I began having pain in my right shoulder, and had surgery to correct this.
I thought I was slowly going crazy, never knowing what the next day would bring. Prior to 1991, I rarely saw my Doctor, now I was in his office almost every week. He was trying to diagnose what was happening to me, and who to refer me to for treatment. But my symptoms would come and go, and unless they were observable to the Doctor I was referred to, it was hopeless trying to explain the phenomena without the Doctor thinking I was just some hysterical woman. I never thought of taking pictures of the rash.
In the early part of 1993, I began suffering from bouts of vertigo. My head would swim, with even a slight turn of my head. As the disease progressed through the years, the world would swim when I just moved my eyeballs. After a few months of this, I became frightened, thinking I had a brain tumor. I didn't mention it to my Doctor at first, instead I began getting my affairs in order.
I didn't dare talk about it, especially after the previous symptoms, that came and went with no explanation. I waited for it to disappear also, but of course it didn't, which frightened me even more. As the months progressed, my heart beat became irregular, my eyes were dry and very sensitive to light, and my joints ached; not just my knees, but my hands, wrists, ankles and feet.
I had TMJ in my right ear/jaw that would also come and go. In the summer of 1993, I fell from a truck bed, on to my back, while doing yard work. I landed softly on the lawn, and cut tree foliage. I felt fine, but the next day, while fishing at one of the local lakes, I turned to talk with my fishing companion, and felt sharp pains in my lower back, making it difficult to get up or to walk. It felt like I twisted it out of place. After a couple of days the pain got worse so I saw my Doctor.
He is an Osteopathic Doctor, so he checked to see if my back was out of alignment. There were no serious problems that would explain the extreme pain. The pain continued to get worse, as well as my other symptoms, so much that I was having difficulty working.
on the last day of September 1993, I managed to drive to work. I'm a Licensed Clinical Social worker and was a Manager for a Mental Health Outpatient Clinic. Upon arrival, I found that I could go no filthier than the clerical offices. I sat down and said," I can't do this anymore.
I was driven home and admitted to the hospital, very ill, with some unknown, and unexplained illness. I underwent numerous tests, including, MRI, brain scan, blood work for every test known, including AIDS, Syphilis, and Lyme Disease. I was marginally questionable for Syphilis, and at the time I thought it was odd when I was questioned about my sexual habits and practices.
Some of the tests for Lyme Disease were inconsistent but essentially negative. Along with my Mother's insistence, they began IV Rocephin, and this was continued at home, with Home Health Nurses. During these infusions, I became extremely ill, with day and night sweats, dystonic bladder, extreme pain in my back and legs, and weeping pustules on my arms, especially at the infusion sites.
I was readmitted to the hospital briefly, because of dehydration and pain management. After discharge, I had neurological testing, that showed that I had multiple areas of delay, suggesting multiple areas of abnormalities in the central nervous system. I had difficulty ambulating, and at times, during the next two years, required a wheelchair.
At one point there was discussion of my being placed in a Nursing Home. I was total care. Despite this though, I gradually improved and by the Holidays, I felt I was somewhat cured. I was looking forward to returning to work and resuming my life. In the beginning of the New Year of 1994, my world crumbled. I began relapsing, feeling helpless, hopeless, and out of control.
1994 was an ongoing nightmare. My days were a blur, with pain that racked my whole body. Even my hair and teeth hurt. My spinal area was so painful that I had to lay on an, "egg crate" foam rubber, and use numerous pillows to take the pressure off my back. At this time, I was taking MS Contin and Dilauded, and that just took the edge off the pain. My skin was so sensitive, I couldn't stand to be touched.
I was on IV Rocephin twice, during that year, once, for 23 days and the other for, 71 days, including several weeks with a PICC line to the superior vena cava of my heart. I was also on various oral antibiotics. I continued to relapse every I to 2 months while on the antibiotics. It seemed to me then, that the bacteria became resistant after only I month, and the antibiotic was useless.
During these relapses, I experienced loss of memory, poor concentration, and from a Psychologist's testing, it was determined that I had mild dementia. I also had poor coordination, dystonic bladder, where I had to catheterize myself, and jabbing pain in my back that felt like "boots kicking me in the kidneys." I also experienced vertigo to where I would stumble and fall.
I had shortness of breath, an irregular heart beat, sweats and chills, extreme fatigue, and experienced night terrors, where friends that had died in the last 20 years, gathered around my bed nightly, smiling and waving for me to come with them. One evening my Mother called from Minnesota, and I told her that I hated to go to sleep at night because of my dead friends appearing.
She asked me if I wanted to go with them, and I thought for a while and told her that I wasn't ready yet. She said, "Well then, tell them no!" I did this and they never came back. Sometime in the early part of that year, I began writing a daily journal, to keep track of my symptoms, and my life, because my memory was so poor. This journal, which was extremely tedious to write, because I could no longer spell, and had difficulty even thinking of a word to describe what I was experiencing, was helpful in managing my own care, and assisting the Doctor in treatment.
During my visits to him, he would patiently listen while I read to him a list of my symptoms, and discussed the latest material sent to me, via my parents from Tom Grier and the Duluth, Minnesota Lyme Disease Support Group. My parents have attended
monthly meetings, of this group, since 1993, to help them and myself, understand, and cope with this devastating disease.
During 1995, I continued to relapse every 1 to 2 months, same as the previous year, and this required changes in antibiotics. I noted in my journal that my relapses were,"nightmares that never seemed to end." I was experiencing the usual symptoms, but now I had more difficulty in coordination. Vertigo continued to plague me relentlessly, so I would stumble and fall. In February of 1995, I stumbled and fell, injuring my right knee, and hitting my head on the pavement resulting in a cut on my forehead.
I was a bloody mess, and my knee was swollen and red. My knee required orthoscopic surgery for repair. After surgery the Orthopedic Surgeon reported to me that the cartilage in my knee was so bad that it pealed away like an orange. He added that if one knee was in this shape, the other one was probably the same. We also concluded during our discussion, that my right hip might also be in the same condition.
This is the result of Lyme arthritis. The Doctors have attempted to assure me that they can do wonderful hip and knee replacements, but I felt more depressed than assured thinking about this. I managed to trudge through the summer of 1995, with frequent changes of antibiotics. I was trying to reduce to less potent pain medication, and ended up in the emergency room twice for chest pains and very irregular heart beat.
On the second trip, I was admitted for a couple of days, to stabilize my heart. My head and chest felt like they would blow up at any second. I attributed all this to the reduction in pain medication, but afterward, I continued to have heart problems, even though the opiates were discontinued. I would wake up in the middle of the night with chest pains, and pain and tingling down my left arm.
I was already on Inderal, so it was increased. During these times I would sleep sitting up in my recliner. I've spent many months sleeping in that chair, instead of my bed. In the fall of 1995, my insurance ran out so I discontinued antibiotics. I concluded that after all the antibiotics I have taken, thus far, to combat this bacteria, it must certainly be all killed by now, and further antibiotics treatments would be counterproductive.
I found ample literature on Lyme Disease, to support this theory. By December 1995, however, I was suffering from severe arthritic symptoms, and using a cane and wheelchair to ambulate. I also experienced headaches, numbness on the right side of my face, including nose, lips, and gums. The burning pain in my spine was so bad that, I broke out in sweats day and night. I was getting lost in my own neighborhood, when I tried to drive.
I had enough, and was restarted on antibiotics. In four days I started to improve. I finally realized that I still had Lyme Disease, and there was no cure, only management of the disease.
In 1996, my Doctor began a form of, "pulse therapy," where I would take antibiotics, either Biaxin and Bactrim, or Zithromax and Bactrim, for a month, then off 1-2 months, or when I began relapsing. It was hoped that the period between relapses would extend, as time and treatment continued.
My Doctor felt that by this method, my immune system would be strengthened, and along with the antibiotics have more of an impact on the disease. I responded well to this, even if the period off antibiotics was short at first. I began describing these periods as my, "window period," where I managed to function fairly well, and prepared myself for the next assault. The assaults, were still alarming, including losing my eye sight, where the world was a blur of colors and shapes.
When I did have my eyesight, I saw things that weren't there, like giant worms coming out of my book case. It was around this time that I became aware that my body and mind were suffering from permanent disabilities because of these continuing assaults from the disease
process. I wondered with my doctor, what would be left of me to salvage, so that I could function and have some kind of life.
Prior to Lyme Disease, I was in very good health, exercising, at least 3 times a week at the local gym. I have belonged to a gym, before it was fashionable for women to join. During the 70's I was running with the San Diego, Balboa running club. I looked at myself now and saw a shadow of my former self. Also, I used to have a quick mind, and a good memory; now I was dependent on notes plastered everywhere so I could remember things.
I watched movies on TV, over and over again because I couldn't remember if I saw it before. It was the same with reading. To begin with, it was difficult to concentrate. My mind would wander, triggered by something that I just read. If I did manage to finish a few chapters of a book, I couldn't, for the life of me, remember what I just read.
I had another Neurological exam, and it was determined that I had permanent nerve damage, as a result of spinal cord disease, chronic, secondary to central nervous system infection from Borrelia Burgdorferi. I knew I had to have some kind of plan for rehabilitation, so I wouldn't deteriorate further.
This brings me to 1997 and early 1998. As with most chronic Lyme Disease sufferers, I continue to have my "ups and downs." I remain on Pulse Therapy, and the longest I've been off antibiotics is 2 1/2 months. When I begin relapsing, I go on either Biaxin and Bactrim, or Zithromax and Bactrim, for 30 days. Sometimes I'm ill for a week or so when I restart, but it's not as debilitating as it used to be.
It's difficult to explain how wonderful it is for the brief period that I'm off antibiotics. My body seems to normalize a little. I'm never really symptom free, despite all this on and off business. The vertigo, which I experienced every day for 5 years, now comes and goes. It was gone for 3 months, then back for 2. Now it's gone again. I continue to have problems with my concentration and memory.
Some days I haven't a clue what I did 2 days ago, or even that morning. This continues to drive me crazy. My overall stamina is better, so I manage to " have a life," but at times fatigue will flatten me for a day or two. I have Lyme arthritis everywhere, and I find that exercise at the local gym helps, along with frequent trips to my sauna.
I continue to take Inderal daily for irregular heart beat and occasionally experience chest pain when I "over do," and become fatigued. I also have neuropathy in my extremities, and elsewhere. Recently, I discussed with my Doctor, that the neurological pain, or nerve pain has gradually lessened over the years. I continue to have pain every hour of my life but I manage with less pain medication.
I began to wonder, whether the reduction in pain was, because the disease process has slowed up, or because of the disease process, many of the nerve endings have died. In September, I fell/jumped off a ladder, and suffered a compression fracture of the heel on my left foot, and severely sprained the ankle. My left foot landed on a concrete slab. It was a twisted mess.
I could hardly believe it was my foot that l was looking at. So while balancing on one foot, I set it back into place, then I went to the Doctor's office. After the first day I had little or no pain. When the Orthopedic Doctors were manipulating my foot, they were wincing, asking, "Doesn't that hurt?" It didn't, and if it wasn't for them describing the x-rays, I wouldn't have believed I had a fracture.
Needless to say, I do have nerve damage. When I'm relapsing with Lyme Disease, everything gets worse. My memory and concentration is worse, I experience headaches, and burning pain in my spine and pelvis. The arthritis is more painful and debilitating, fatigue is worse, and I may see things, from the corner of my eyes, that aren't there. My glands swell up, I experience TMJ, my ears ring, and my eyes burn.
Sometimes when I'm relapsing, it seems like I quickly spiral down, but I've discovered, in reality, that I'm not aware until I get several of the previously mentioned symptoms, or my Mother, during one of our weekly phone conversations, points it out to me. I
don't have a real sense of my body anymore, let alone that anything is wrong.
During the course of my illness, I've seen several specialists, regarding diagnosis and treatment.
The experience was similar to the story of the blind men and the elephant. Each Doctor attempting to diagnosis from knowledge of their specialty or experience. Not one had any knowledge or training in Lyme Disease. One Doctor reported that I had the worst case of Chronic Fatigue Syndrome he had ever seen. He admitted that he knew little about Lyme Disease, but knew a great deal about Chronic Fatigue Syndrome.
A Disease Specialist was insistent that after all the IV therapies I received, I no longer had Lyme Disease but some other unknown malady. It was very difficult dealing with these Doctors when I was so sick. The problem of course, was, that I never tested positive for Lyme Disease. Without this, the majority of the Doctors in San Diego were reluctant to give this diagnosis, despite my continued effort to provide them with literature on Lyme Disease, especially information that the blood test for Lyme Disease was unreliable, and a clinical diagnosis must be made.
Fortunately my Primary Physician followed the guidelines for diagnosis and treatment of Lyme Disease, and I'm here to tell about it today.
I look back over the last 5 years, and I am truly grateful to be alive today, participating in life. Many of those years I was angry, that I had this disease, and that it changed my life, almost over night. "Why me?" I kept asking. I was grieving over the numerous losses, as a result of the Lyme Disease, including job, profession, colleagues, friends, health, relationship, etc.
This year I'll be 55 years old. I have not totally abandoned my hope that I'll be able to return to work someday. This year I would like to do some volunteer work, something in line with my profession. At this time, I'm not sure what kind of volunteer work I could do, or for that matter who would want me. My Doctor wants me to start challenging my mind again, to stimulate other gray matter, to compensate for what was lost.
Writing this story has been difficult but challenging, so I guess I'm on my way. Reviewing my journal, I discovered some notes that I wrote when I was very ill. They read as follows, "Sometimes I feel comfort in the pain. It makes me realize that I'm still alive." "There is no future, no past, only today, and somedays even that is too much."
Nancy
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