Recently, I had an episode where I lost much of my color vision for about an hour and a half. My eyes are very sensitive to bright light and floaters have been more noticeable. All prompted a trip to the eye institute this week, a clinic of residents.
The first doctor I met was just beginning his career. He was kind while he carefully gathered basic information. The second was a confident young man a bit farther in his training. When I told him of my diagnosis, he was quick to question.
"Why is your doctor so sure you have Lyme disease?"
"I have had nearly all of the symptoms. My IGM values have been elevated on several occasions. My ANA, which had been climbing for 3 years and reached a "sky-high" 2530 then returned to normal in 6 weeks with two rounds of antibiotics. That will not happen with Lupus. Of 40 Lupus tests, other than the high ANA, I've never had a positive Lupus test."
"Did you ever have the famous bull's eye rash?"
"It only presents in 50% of the cases."
"What symptoms do you currently have?"
"Daily headaches, always on both sides and always in my temples. Most recently, neuropathy and muscle wasting in arms and legs. I was losing the ability to walk."
"Well, do you have any cardiac issues?"
"Yes, I have a rare flattening of the T-wave and have developed mitral valve prolapse."
"Where were you diagnosed? Up north or down here?"
"By one of your physicians at Beaumont."
"Why did it take so long for you to get a diagnosis?"
Now, there's the big question, isn't it? Could it be that my early diagnosis of Lupus with it's treatment to severely compromise my immune system, also compromising my body's attempt to fight Lyme, played a factor?
At about this time, the first doctor stepped in, explaining that I was a biologist and nature photographer and had ample opportunity to be exposed to the disease. Bless you!
The second finally examined my eyes, then both left the room while I waited for the senior resident's examination. As I was waiting, I couldn't help but think that if I were to never see another doctor again, it would be just fine. I don't know why Lyme patients are treated this way? I am sure, had I said I had cancer, I would have been treated differently.
The senior resident came in. "How long have you been treated for lupus and is it well-controlled under medication?"
She's kidding, right?
"I was misdiagnosed for years with Lupus and my disease at that time was very poorly managed under medication."
This time doctor two stepped in to tell her that I did not have Lupus, but instead had Lyme disease.
The senior resident did a very nice job from that point and noted some unusual scarring on my cornea, usually caused by a medication that I've never taken. When I came home, I was not surprised to learn that Lyme will cause scarring of the cornea as the bacteria follow the trigeminal nerve to the optic nerve. I have had numbness and pain in the trigeminal nerve for years. As a dear friend said, "Is there a part of your body left that hasn't been affected by this miserable disease?"
Just one more piece that fits into the Lyme puzzle. So far, they've all fit, for those willing to look.
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