HOLSTEIN — Many people in our area don’t give Lyme disease a second thought because they think there are no ticks in this area that carry the disease. As Shannon McGuire of Holstein learned, this is not the case. Even though she more than likely picked up the tick in Minnesota, infected ticks are now reported in most states.
Lyme disease is a common tick-borne illness, mainly found in the eastern United States and Upper Midwest. Lyme disease is caused by the bacterium borrelia burgdorferi. Any black-legged tick such as deer ticks, which feed on the blood of animals and humans, can carry the bacteria and spread it when feeding.
The best and earliest sign of infection is a rash, called erythema migrans. EM will appear in around 60-80 percent of patients. EM may appear within a few days to a month, usually at the site of the tick bite. The rash will first appear as a small, red bump.
Over the next few days, the redness expands. As the rash expands, it begins to look like a bull’s eye, with a red center and a red ring surrounding a clear area. EM should not be mistaken for any initial skin irritation at the site of the bite which fades within about a week. In McGuire’s case she never had the rash.
In 2016 McGuire was finally diagnosed with chronic Lyme disease, after four years of suffering. At first she began to feel fever, chills, fatigue, muscle and joint aches and swollen lymph nodes. In the beginning she thought she had the flu. She would get better for a couple of weeks and then the symptoms came back. This continued for months. When she went to local doctors they were unable to find anything wrong. This left McGuire feeling frustrated and discouraged.
As time went on she began to have stomach issues and pain above her liver. McGuire went to the Mayo Clinic where she was told she had some kind of blood disorder. It wasn’t much longer when she was rushed to the ER with tachycardia. She had been working some very long hours so they sent her home telling her it was stress.
She had been tested for Lyme disease twice using the enzyme immunoassay, but the test came up negative. Still no answers to the ever increasing deterioration of her body. This went on for years where she would have spells of sickness followed by periods of good health.
McGuire relocated to Iowa to be with her mother after her father passed away. She took a position with Northwest Iowa Bone and Joint Surgery in Storm Lake. Her heath took a turn for the worse and now she was having tremors, dizziness and weakness as well as the symptoms she had previously.
A friend from Minneapolis told McGuire about a family practitioner doctor in St. Paul who specialized in chronic illness. She made an appointment with the doctor who said she did not seem to have an answer for her condition. Things still got worse for McGuire.
Yet another year went by. The tremors were more severe, she was exhausted all the time, she was weak, her jaws hurt, her feet and hands were swelling. She was getting night sweats so bad she had to get up and change her night apparel and she was blacking out. She wrote a long email to the St. Paul doctor and sent all her medical records to her. The doctor called her and had her in within three days. This time the doctor did a whole panel of blood work and sent it to a lab in Palo Alto, California, called IGeneX Inc. The panel of blood tests revealed blood bands 31 and 34. These bands only show up when a person tests proof positive for Lyme disease. The doctor that had McGuire tested is what people in the trade considers Lyme disease literate. Had McGuire’s illness been left to progress even further it might have proven to be terminal, she was told.
Current tests suggested by the CDC — the ELISA test and the Western Blot are only 35-50 percent accurate and have a tendency to give false negative.
McGuire, who had been on short-term disability, had to quit her job as she was physically unable to work. She is now on a regimen of antibiotics, supplements and anti-inflammatory medications. She takes 31 pills a day and is slowly becoming more stabilized. Now she is able to take short walks or walk in a pool. Riding her horse has also proven to be helpful as it uses muscles in the legs that aren’t normally used. She is working hard to get herself stronger so she can began to function normally. She is still unable to work but does spend some time volunteering.
There are some facts McGuire would like to share. Lyme disease is a complex disease that can be highly difficult to diagnose as in McGuire’s case. Reliable diagnostic tests are not yet available which leaves both physicians and patients alike relying on the so called “telltale signs” of Lyme disease: discovery of a tick on the skin, a bull’s eye rash, and possible joint pain. However according to the International Lyme and Associated Diseases Society, research indicates that only 50-60 percent of patients recall a tick bite; the rash is reported in only 35-60 percent of patients; and joint swelling occurs in only 20-30 percent of patients and is often masked with the use of anti-inflammatory medications such Ibuprofen.
Based on these statistics, a significant number of people who contract Lyme disease are misdiagnosed during the early stages, leading to a chronic form of the disease which is much more difficult to treat. Lyme disease is often referred to as the “great imitator” because it mimics other conditions often causing patients to suffer a complicated maze of doctors in search of appropriate treatment. It is not uncommon in its chronic stage to be misdiagnosed with multiple sclerosis or dementia or some type of neurological disorders.
According to the CDC, Lyme disease infects 300,000 people per year. That is 10 times more than previously reported. CDC reports there is no accurate test however the banding test done by IGeneX has provided more positive results than the other two types of testing.
“Don’t ignore what your body is telling you,” McGuire suggested. “If you know you have had a tick bite or develop the rash, tell your doctors. If you have the physical symptoms that recur insist that your doctor run the test. This is not a disease you want to take a wait and see attitude on. The sooner you get treated, the more chance a few antibiotics can take care of the problem. If you don’t get answers, ask other doctors. The more people are aware of the disease and all the things that come with it, the quicker you can be diagnosed and treated. You don’t have to wait several years like I did..I don’t wish what I have been through on anyone.”