Lyme disease victims relate their stories
In “Baffled by chronic Lyme disease” [Mar. 6], Laurie McClellan described the struggle that began when her husband’s symptoms, notably overwhelming fatigue, were diagnosed as chronic Lyme disease, a condition not recognized by some medical experts. Many readers wrote to tell us of similar experiences. A few excerpts are printed here.
I was a Marine co-pilot when I became ill. The military sent me to virtually every specialist they could, but no doctor could find a unifying diagnosis for my 40-plus symptoms. I had already tested positive for Lyme disease by a civilian doctor, but the military refused to acknowledge my diagnosis.
The military told me that if I recovered I might have the option of returning to flying, but that I would need a waiver for Lyme disease. I always asked the military doctors, “How can you require me to get a piece of paper saying I am safe to fly because of Lyme disease when you don’t acknowledge I have it and that chronic Lyme exists?” The conversations always ended at that point.
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After a two-year battle I was medically retired from the military. At 28, I am one of three veterans that I know of rated at 100 percent disabled by the Veterans Administration for Lyme disease. I know of many others who have tried and been denied any compensation for Lyme and associated tick-borne diseases.
Luke D. Miller,Pensacola, Fla.
When I was in my mid-30s I was diagnosed with late-stage Lyme disease and given antibiotics for long periods of time. I would go on them and feel better; I would go off and would get worse. I also had cognitive issues.
It took me years to find a doctor who really helped. He also diagnosed me with a second tick-borne disease, babesiosis. So not only did he treat me for Lyme, he treated and cured five years of chronic dizzy spells! He also recommended that I go on a yeast-free diet. I did this in conjunction with medications, eventually stopping the meds but continuing the diet for a year. I also started running in the middle of this. I truly believe that diet is a huge part of recovery. Treating Lyme is way more than just taking medications.
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Victoria Kirshe,Glenwood
I know about sleepless nights and unspeakable pain and begging my doctor to consider Lyme disease. But since I’d found no tick and had no rash, instead she prescribed $2,300 worth of tests — not including a test for Lyme.
After almost two weeks, I returned to the doctor’s office with a rash from head to toe. The positive side of all that suffering was that, when finally tested for Lyme, I had the full-blown disease, so then I got respect — and antibiotics.
I also acquired an enormous amount of sympathy for the hundreds, maybe thousands of sufferers whose tests are not definitive and who are never believed.
Mary Carpenter,Washington
After years of seeing many doctors, I was finally diagnosed with both chronic Lyme disease and fibromyalgia. I tried all sorts of treatment, from antibiotics to herbs and biofeedback. Nothing worked.
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I knew exercise could make me feel better, yet I was unable to do so many of the things I had previously enjoyed. Someone suggested that I try Pilates. I began to feel better after a few weeks of consistent practice. Six years later, I still have more energy and less joint pain. Clearly, Pilates had done something to relieve the effects of my chronic Lyme disease, when nothing else had worked.
Paula Pettavino,
I was one of the lucky ones in that I tested positive for Lyme disease (every immune marker was positive: 12 out of 12) and yet I still received only limited treatment. After two rounds of doxycycline, I was told that there was no way the Lyme could still be in my body. Two weeks later, all the symptoms came back.
I then landed at a local hospital’s infectious disease division, where after 28 days of IV treatment, just as my symptoms were beginning to improve, I was told that I was to come off the antibiotics, that staying on them would be too dangerous, that that was the protocol. I was able to prolong the therapy for two more weeks.
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I eventually went to see my primary-care physician. (In all this I had been handed from specialist to specialist.) He was willing to work with me; a combination of supplements to build my immune system and alternative treatments have helped me regain my strength.
One of the ironies of my case is that I have stayed away from Western medicine for almost 25 years. I am the last person who would want to misuse or overuse medication. And yet when I truly came to need the power of Western medicine, it was a battle to have access to it.
Martina Crocker,
Washington
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