Lyme Disease makes lemon of a good life

by Symptom Advice on December 20, 2010

Who would think that a teeny tick could transform your whole life, and not in a good way? Ticks transmit lyme disease, a little-understood and often misdiagnosed phenomenon that turns life into lemons for those who suffer from it. More people are afflicted with the disease than is known — one website reported there are more than one billion cases of lyme disease worldwide. It has come home to Estes Park, with 27-year-old Rebekah Steers, daughter-in-law of Roger and Karin Steers of the Anniversary Inn. there will be a silent auction benefit Friday night at Marys Lake Lodge, from 4 to 9 p.m., to help with Rebekah`s medical bills. (See the story in the Estes Inside and out section on Friday).

Rebekah, married three years to Graham Steers, was finally diagnosed with lyme disease this summer, after suffering symptoms affecting her whole body for a long period. she and Graham were forced to move from Chicago to Estes Park, after she became so incapacitated she could no longer work or care for herself.

Rebekah writes in her blog, “Lyme brought me fistfuls of fears…. It would be unconscionable to condemn anyone to suffer this illness. I cannot even fathom the weight of passing it to a child.”

But what is “it”? Lyme disease begins with a bite from an infected tick. The disease has three phases: early localized, early disseminated and late persistent. Rebekah is in the third stage — because she wasn`t properly diagnosed until her chiropractor found the disease that fit her symptoms. Lyme is difficult to diagnose and there is resistance within the medical community to finding correct treatment.

Rebekah writes, “…I was struck dumb when I found out that I had been diagnosed with a controversial illness….

“…Chronic lyme, the kind that greets me and so many others every morning, is a highly political disease. For that reason, it isn`t well-known. Because of that status, insurance doesn`t recognize it and won`t pay for its treatment…. And yet lyme is all over the place…. It is out there in epidemic proportions. And it is spreading.”

The way it spreads is by the bite of an infected lyme tick. The name “lyme” derives from cases in Lyme, Conn., in 1975, when a group of children began suffering from arthritis, all found to be caused by tick bites. Lyme ticks are tiny, spideresque creatures inhabiting woodland and other grassy areas, feeding on the blood of birds and mammals.

Ticks attach themselves to food sources that rub against bushes, plants and grass. they often move to a warm, moist location, such as your head, neck, armpits, ankles or groin. they may crawl on your skin up to an hour before biting. Blacklegged ticks or deer ticks, which carry lyme disease bacteria, are usually no bigger than the head of a pin.

Some people who develop lyme disease first have a rash — usually circular, enlarging over time — at the site of the tick bite (Rebakah didn`t).

Rebekah writes that in the months following her infection, she “laid down and have not worked or risen from bed without pain since…. heavily medicated, confined to a bed or a wheelchair, and suffering chronic pain — I saw many specialists, with many different prognoses and diagnoses….. Now that I have the proper diagnosis, I am seeing some improvement for the first time in over a year.”

Along with physical easing of symptoms, fears are also allayed. Because of the tremors, shakes and pain confining her to bed, Rebekah has feared she would never feel useful again. Lyme is a cousin to syphilis and Rebekah has feared infecting her husband. however, she said that “all of these fears could be quieted with sufficient research and knowledge; there is an absolute need for more research with respect to lyme.”

Rebekah writes that “through two years of treatment, a Lymie friend has whittled down her list of 26 symptoms to two,” including persistent, devastating insomnia. Rebekah also suffers from insomnia, reporting that she read the parasite babesia — one of the free riders that accompanies a lyme tick bite — is most active at night, a contributing factor to insomnia in hosts.

Articles in the “Annals of Internal Medicine” attribute “long-term impairment of functional status” to exposure to lyme disease.

Early stages of the disease may include flu-like symptoms, with or without the rash. Victims suffer from a lack of energy (the most common early symptom); headache and stiff neck; fever and chills; muscle and joint pain; and swollen lymph nodes.

Within one to four months of infection, if the disease is not detected and treated, the infection may affect the skin, joints, nervous system and heart. Symptoms at this stage include: tiredness; additional skin rashes in several places on the body; pain, weakness or numbness in the arms or legs; inability to control the muscles of the face — paralysis of facial nerves; recurring headaches or fainting; poor memory and reduced ability to concentrate; conjunctivitis (pink eye) or sometimes damage to deep tissue in the eyes; occasional rapid heartbeats (palpitations) or serious heart problems.

If still undiagnosed and untreated, lyme disease proceeds to damage the joints, nerves and brain, perhaps even years after infection. Symptoms at this stage may include: swelling and pain in the joints, especially in the knees; numbness and tingling in the hands, feet or back; partial facial nerve paralysis; neurologic changes, including problems with memory, mood or sleep, and sometimes problems speaking; and chronic lyme arthritis.

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