Misdiagnosis causes months of confusion for Lyme sufferer

Bristol Press - CT, United States
Melissa St. James has spent her fair share of time at hospitals lately, and it’s not only because she works in one.

Since April, she, her husband and her children have all been diagnosed with Lyme disease. What made matters worse was that St. James was originally diagnosed in November of last year as having Multiple Sclerosis, a far more debilitating, expensive and serious condition -- especially for someone without insurance coverage.

"My doctor told me, ‘You have MS, and the injections are $1,500 a month,’" St. James said. "Let me know how you’ll do that.’

"I just started crying," St. James said. "I’ve worked in nursing homes. I’ve seen 40-year-olds with MS."

"I asked him if it could be Lyme disease. He said, ‘Absolutely not.’ I asked if he was ever wrong, if he ever misdiagnosed. His answer was, ‘Not often but occasionally,’" St. James said. "I don’t blame him for not knowing. ... He was an older doctor. ..But no one ever told me that Lyme imitated MS ... (Not even) in nursing school."

"The individual symptoms don’t add up," St. James explained. "They’re vague, so they don’t get put together."

St. James sought a second opinion. That doctor listened to her inquiries about whether she could have Lyme disease. He too, however, discounted her information and reaffirmed her original diagnosis.

"He told me, ‘That’s great, you should be a research nurse -- but you’re wrong. And if you don’t take these shots you’ll be in a wheelchair.’"

St. James was fortunate enough that her church and local organizations such as Price Chopper were able to raise money to help reduce the cost of the medication.

After taking injections for three and a half months, not only was St. James not improving, her symptoms were getting worse. After seeing a neurologist in January, she was told that that the exacerbations, sudden worsening of MS symptoms, that rendered her unable to walk, usually only occurred about two times a year in most MS cases. St. James was having the attacks every six weeks.

The muscle and joint pain was compounded by chronic fatigue. Daily tasks such as cooking and cleaning became nearly impossible.

"I have three kids, I’ve never had a problem with energy," St. James explained. "My mother would have to come over once a week to clean my house, and she would tell me that I needed to nap in the afternoons. I’m 31, who wants to nap?"

Confusion was another aspect of the disease that St. James believes contributed to a car accident she had in January.

"There’s this brain fog, you’re not as sharp. I was having speech difficulty -- my words would get confused. I’d want to say picnic table and I’d say play pen. The way my husband and kids would look at me ... I just couldn’t live like that anymore. One day I just decided I was stopping the injections," St. James said. "They weren’t helping me. Out of the sky, it popped into my head ..Lyme disease ..The Lord just put it on my brain."

St. James weened herself off of pain medication and anti-spasmatic medication as well.

"I was really scared, I had that wheelchair in the back of my mind," St. James said.

After discontinuing the shots, St. James found a "Lyme-literate" doctor, recommended to her by a friend who had a similar misdiagnosis. This doctor listened to her input and finally tested her for Lyme disease. He then started her on antibiotics, commonly prescribed for a few weeks to treat the disease. However, when symptoms persist, they can be used for longer periods of time.

"Within two and a half months I had 90 percent resolution of symptoms," St. James said. "My attitude changed immediately."

"There was no more limping, no numb leg dragging along. The pins and needles from my hips to my feet were so bad I used to get sick to my stomach ... I haven’t had that feeling in so long," she said, smiling. "It was a complete turn-around."

Lyme disease can be very difficult to detect.

"Various medical research has reported lyme borrelia as a stealth pathogen that can hide in immune cells," according to the Greater Hartford Lyme Disease Support and Action Group.

Problems with false negatives and false positives with the most commonly used tests, ELISA and the Western Blot, can cause confusion.

According to the commercial lab Quest Diagnostics of Wallingford, "A negative Western Blot interpretation does not exclude the possibility of infection with B. burgdorferi (the Lyme bacteria)."

When the test results come back negative, the common tendency is to rule Lyme out completely and look for another cause. However, the longer the disease is misdiagnosed or not found, the harder it is to reverse it.

Symptoms of Lyme disease can also easily be attributed to other diseases. And the initial flu-like stage with fatigue, headache, muscle aches and fever, or the nausea, vomiting, diarrhea, dizziness and vision changes are common to many other ailments.

For someone without insurance, it can be even more of a challenge to find the cause of the pain and discomfort that Lyme disease can cause.

St. James’ friend of 15 years was diagnosed as having MS at the beginning of their friendship, and has spent the past 10 years in a wheelchair. Upon St. James suggestion, she was examined and tested for Lyme disease. The tests came back positive.

"I’ve never seen someone so happy to have Lyme disease," St. James said. "..But they did four tests on my girlfriend [who had insurance] and they only did one on me."

St. James current doctor treats her the best he can with the resources that are available to him.

"My doctor told me he could treat me so much better with insurance," St. James said.

"Lyme is the easiest and cheapest solution," St. James said. "But these autoimmune diseases are big money makers. And Lyme doesn’t give the money to the drug companies. No one said that for $35 a month in antibiotics instead of $1,500 in daily injections, I’d be getting better."

Since her diagnosis was corrected, St. James has few lingering medical issues. Unfortunately, the bills related to her misdiagnosis are one of them.

"I owe UConn thousands of dollars when I got no help. The (neurologist) put me on Prednisone, which is the worst thing for a bacterial infection because it suppresses the immune system. I got worse, so I weened myself off it," St. James said. "There was no follow-up from my doctor. But I do get his bills."

Yet her resolve is unchanged. St. James serves as a contact person for the Greater Hartford Lyme Disease Support & Action Group, www.ctlymedisease.org.

"This is important for people to know. At least I have the medical knowledge and the resources to know which direction to go in. What about people who don’t?" St. James said. "It upsets me that they’re just left hanging. I want to equip the patient with the knowledge, because the doctors aren’t doing it."

"I just thank God so much that I have my life back," St. James said.