Posted on Aug 3, 2010 in Blog |

Posted in Posh Seven magazine: http://www.poshseven.com/the-quiet-disease-lyme.html

I am an “indoors” person, preferring air conditioning to the local humidity. I like to read, needlepoint and write. I thought I was the least likely person to contract Lyme disease. Yet, it happened to me.

My diagnosis came at age 46 after six years of chronic pain, varying, migrating symptoms, 21 physicians, many diagnoses and a tenacious uncle who demanded proper testing for Lyme. In less than a year’s time I deteriorated from walking three miles a day to getting out of bed in the morning suffering excruciating pain, saying to my husband, “I can’t go through another day feeling this much pain.”

My symptoms were vague and varied: memory loss, clumsiness, back pain, sleep problems, fatigue, muscle weakness, ankle and knee pain, tennis elbow, hot flashes, depression, dry skin patches. Each doctor listened to my specific complaints, examined me, and then offered his/her own explanation and treatment. ‘Middle age’ or ‘emotional’ was mentioned often. Some diagnoses were accurate—hypothyroidism or gallstones—and necessitated treatment, but they are also symptoms of a larger disease process, needing to be viewed through a greater lens.

Sharon’s Symptom History:
Sharon's Symptom History

Recurrent sinus infections, night sweats, hot flashes, dry skin

Clumsiness, falling easily, muscle weakness, swollen joints, tooth decay

Gallstones, H.Pylori/digestive problems, fatigue, hair loss

Gastrin level elevated, hypothyroid, vitamin D deficiency, forgetfulness, trouble focusing

Stomach atrophy, headaches, daytime sleepiness  and insomnia, elevated heart rate, ideopathic  intermittent right temporal waves, ideopathic hypersomnia

Persistent, dry cough, peripheral neuropathy, numbness in hands and feet, chest pains, muscle
twitching

Occasional blurry vision, incontinence, back pain, cyst on spinal cord

Lyme disease is termed the “Great Imitator;” it mimics many other medical conditions. It is often misdiagnosed for years and then often improperly treated. The ELISA Lyme test is the simplest, least expensive, easiest to perform and most common Lyme test ordered. It is an automated test, allowing for faster turnover and less costs. It is also up to 80% inaccurate with false negatives. The Western Blot (WB) test, however, is not automated. It takes time to grow the cultures and it costs more money.

Over six years of treating me, the neurologist ordered the ELISA three times, never the WB. Had he, he would have saved me six years of suffering and chronic pain and degenerative symptoms. Those six years started with sleep issues, then I became clumsy, developed numbness and injured my back. My joints swelled and my ankles looked like golf balls inserted under my skin. Frustrated, I went to my endocrinologist.

“Let’s play Mystery Diagnosis.” He ordered a Lupus blood test; it returned positive. I broke the news to my family. A day later, my uncle encouraged me to get the WB. My aunt Betty died in 2002 at 57 from Lyme diagnosed too late.

Two years prior, with a tick bite and bull’s eye rash, she heard her physician say, “We don’t have Lyme here. It’s so rare, we don’t test for it.” In two years, Betty’s body deteriorated leaving her in a wheelchair. Had Betty received proper Lyme testing and antibiotics, she could be alive now. Lyme disease has been reported in every single state. It exists. Because people travel, Lyme travels. A rheumatologist told me my first WB was negative, but two of my DNA bands were positive. My uncle said, “find another physician.” The next WB showed three bands positive and the rheumatologist said bursitis, not Lyme. My uncle then said, “find a Lyme Literate Medical Doctor (LLMD); get your blood tested at Igenex Lab.”

lyme diseaseThe third WB from Igenex labs (one of the best labs in the nation for detecting Lyme) showed five positive bands. The osteopath vehemently denied Lyme.

“How can I have five bands test positive for Lyme but I don’t have Lyme?” I asked. “I don’t know,” he replied. “So, do you keep looking for a cause?” I asked. “No, I’ll just treat you symptomatically,” he returned. He was not going to look for the cause of my worsening pain? “That’s right,” he confirmed. “Don’t go see anyone else but an LLMD,” my uncle urged. I brought my lab results and symptom history to my present physician (an LLMD) and he ordered more sensitive tests from Galaxy Diagnostics (galaxydx.com). The results revealed two strains of Bartonella, a coinfection of Lyme disease.

The right test and a Lyme Literate Medical Doctor who knows the correct treatment protocol have me feeling better than I have in a decade. Antibiotics, pro-biotics, stress management and alternative therapies are working together to kill the bacteria, strengthen my body and give me my life back.

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