From ALS To A Lyme Disease Diagnosis
Two Limestone women get reprieve from ALS diagnosis
Athens News-Courier, Athens , Alabama , USA
By Charlotte Fulton, firstname.lastname@example.org
"I never thought I'd be so happy to be diagnosed with Lyme Disease," says 54-year-old Vickie Crawford, "but when you consider the alternative..."
Crawford - who has been on a nearly two-year odyssey to get a diagnosis for symptoms that began as a numbness in one side of her lip and grew to include facial numbness, extreme difficulty in swallowing, and slurred speech - had gotten an even more frightening diagnosis of progressive bulbar palsy, an onset of ALS (amyolateral sclerosis, or Lou Gehrig's Disease). But Vickie and husband Gary became their own advocates, researching and networking until their path led to similarly misdiagnosed patients; a research organization with a highly reliable test for Lyme Disease; and a Mobile physician who specializes in treated the often-misdiagnosed illness.
Vickie, who recently retired as librarian of Athens Middle School to give her full attention to getting well, thought she had a sinus infection when in 2003 she noticed some overall achiness and a numbness in one side of her mouth. Despite over-the-counter medications, Vickie's symptoms continued on and off for six months.
When her doctor X-rayed her sinuses and found no infection, he feared a brain tumor and sent her for an MRI. When the test revealed nothing, Vickie was sent to a neurologist who suspected an aneurysm, but a scan of her arteries showed no problem there. The numbness, meanwhile, spread to Vickie's left cheek, then to her forehead. The neurologist investigated the possibility of Bell'sPalsy without the drooping.
In February of 2004, a neurologist in Birmingham asked Vickie if she could recall any extraordinary event that might explain her problems. Vickie told about finding a deer tick attached to her shoulder in May of 2002. After she and Gary had spent an afternoon walking around on river property, she had found a tick crawling in her hair. She'd showered, shampooed, and checked herself carefully that night, but the next morning she found a tick attached to her shoulder. She had gone to a medical clinic where the doctor removed the tick, put her on a two-week course of antibiotics, and told her to come back if she noticed a bull's-eye rash. The rash never appeared and so she had never gone back.
"His (the Birmingham neurologist's) comment was, 'Oh well, if you were on antibiotics for two weeks, there's no way it could be Lyme Disease.'"
Tests performed on the 12 vials of blood he drew showed nothing conclusive.
From February to May, Vickie worked with a chiropractor for neck stiffness. When she reported difficulty swallowing, he sent her to another Birmingham neurologist who ordered another MRI and recommended that she wait six months to see if the symptoms worsened.
"I told him, 'You don't understand,'" said Vickie. "I worry about choking every time I try to eat. School starts in a month. I've got to get some help. His comment was, 'You might learn to take smaller bites.'"
After a free consultation with a chiropractor they'd found in the yellow pages proved disappointing, Vickie went back to her regular M.D. By then, her physical deterioration was obvious: She'd gone from her healthy weight of 115 to just 90 pounds, and she'd lost muscle tone in her neck and shoulders. In the process of eliminating possibilities, he sent her to a rheumatologist, and to the hospital for an endoscopy where the technician told Gary , "I've never seen anything like this before. She has no gag reflex at all. You'll have to watch her closely. She could choke on anything."
Then came the worst news to date: The neurologist told her he suspected ALS, and sent her to a doctor in Birmingham for another opinion. After an EMG, a painful procedure in which, says Vickie, "they stick needles in you and watch you twitch," this neurologist said Vickie had progressive bulbar palsy. That was in October of 2004.
A trip to Mayo Clinic in February 2005 confirmed the diagnosis, and a pulmonary test measured Vickie's breathing at 85 percent.
But the following month came the first glimmer of hope when Vickie's niece told her about a woman who does microcurrent therapy in Indiana and has had success in helping patients regain muscle usage. The Crawfords took their mobile home to Indiana and parked in a campground while Vickie received two treatments a day for a week.
As they worked together, the therapist told Vickie about one of her patients who had secondary Lyme Disease and in her research had found out it mimicked other illnesses. That patient shared her research with Vickie and recommended she visit a nutritionist in a nearby town.
The Crawfords didn't really want to go. Vickie was already on a restricted diet. But their new friend had been so helpful. They went out of obligation - and they're glad they did. The nutritionist and registered medical technician gave Vickie a visual contrast test - a vision test similar to ones that test for color-blindness, except that this test can be an indicator of Lyme Disease. Vickie scored 75 percent. The Crawfords had learned that tests for Lyme Disease can be unreliable, but the nutritionist told them about a highly reliable test by Bowen Research and Training Institute in Tarpon Springs , Florida .
"We had been about to leave for home, but we stayed overnight to get the test done," says Vickie. "We got home on Tuesday, April 26. That Friday she called to say I'd tested positive for LymeDisease. On a scale of 1-10, I'd tested 7-8. She said, 'I won't say you don't have ALS, but you do have Lyme Disease.'"
Ironically, not long before the Crawfords left for Indiana , a lady at Herbs And More had, with Vickie's permission, given her name to another customer, Cheryl Szozda, who had been diagnosed with progressive bulbar palsy. Cheryl's husband Anthony, who suspected Lyme Disease, had done some research and taken her to their medical doctor for lab work to be sent to Bowen. Vickie didn't realize until later that the lab Anthony had recommended was the same one she'd learned about in Indiana .
Anthony had gotten on the Internet and found George McCullars, a Mobile physician and clinical pathologist who specialized in the treatment of Lyme Disease. After her positive Lyme Diseaseresult, Vickie saw McCullars, who's been treating LD patients for more than 20 years.
Vickie Crawford checks the calendar where she marked the date of her diagnosis of Lyme Disease. (News-Courier/Charlotte Fulton )
She's learned so much since then: that months or even years after a tick bite, neurological complications can occur that include numbness, pain, weakness, paralysis of the facial muscles, a stiff neck; that sometimes complications affect the heart or the joints, rather than the nervous system; that her sensitivity to light, a symptom that had stymied her previous doctors, is an indicator of Lyme Disease; and that LD often is misdiagnosed.
McCullars told the Crawfords that the Centers for Disease Control sent out a recommendation around 1998 that physicians treating patients with MS, ALS, Parkinson's and other motor neuron diseases get their patients tested for Lyme Disease.
Vickie says McCullars speculates it could take up to two years to cure her Lyme Disease. Already though, she is seeing progress. Her weight is up to 94 pounds. There was a time when Vickie choked on water, when she avoided eating or drinking when alone. Although she has difficulty chewing some foods because of muscle weakness, her swallowing has improved to the point that she eats a cucumber a day from their garden. The biggest improvement came just last week, when Vickie realized she could bend her neck, thrusting her head backward and forward a dozen times in a row. She still can't lie on her back and lift her head off the pillow without using her hands, but she's confident that will come soon.
The Crawfords consider that they have a lot to be thankful for. Some Lyme Disease patients with neurological complications lose strength in their legs; some lose cognitive ability. Vickie has had neither problem. And not long ago, she sent a letter to her "Angel in Indiana ," thanking her for passing along information that led to a diagnosis and a doctor who understands the disease.
Although Cheryl Szozda's odyssey wasn't of as long a duration as Vickie's, it has been equally as terrifying.
In August of 2004, she began having trouble articulating her words. Suspecting a mini-stroke, she consulted her family physician. From the first, husband Anthony thought Lyme Disease was the culprit. Cheryl had been bitten by a deer tick at the base of her neck the previous April. She'd had flu-like symptoms, but had not been treated for Lyme. When a Western Blot test came back negative for Lyme, the physician did not believe that LD was the cause of her speech problems.
Cheryl's ordeal was similar to Vickie's. Only the symptoms varied. One of the most pronounced symptoms was sleeplessness. A specialist diagnosed sleep deprivation and prescribed sleeping pills. Another checked her for Alzheimer's and other disorders, then concurred with the first specialist's diagnosis.
"At one point there was talk of ALS," says Anthony, who speaks on his wife's behalf. (Though Cheryl has been diagnosed and is undergoing treatment for Lyme Disease, she has not regained the ability to articulate.) "Cheryl got on the internet to research ALS. She went to a site called ericiswinning.com. ,where she read that 50 percent of the people diagnosed with ALS actually have Lyme Disease. We found out about the test Bowen does. We did an independent test and she tested positive. Then it became a matter of finding someone willing to treat Lyme Disease."
They started out with a Huntsville physician who put her on Doxicycline for 30 days. After two months she was feeling better, but her symptoms continued to worsen. Meanwhile, searching the Internet for support groups, Anthony found one headed by a woman from Mobile who told him about McCullars. In three visits, they've seen improvement in several areas: a slight weight gain, improved sleep, cessation of a tongue tremor, and improvement in Cheryl's facial paralysis.
They continue with supplemental therapies such as nutrition and acupuncture - and prayer.
"Prayer is important," says Anthony, who names a network of relatives whose churches keep Cheryl on their prayer list. On that, the Szozdas and the Crawfords agree.
They also agree on the importance of spreading the word about their newfound knowledge.
"People call, e-mail, ask questions," says Anthony. "We don't want to force-feed anybody this information; we just put it out there and let them take a look at it."