Robert went to a “Lyme specialist” and underwent years of antibiotic treatment due to misdiagnosis of chronic Lyme disease. The true diagnosis was a brain tumor.
The CDC posted this heartbreaking story of Robert’s false chronic Lyme diagnosis:
Robert’s story begins with a history of joint pain/stiffness, memory loss, and numbness and tingling in both hands. He is diagnosed with chronic Lyme disease and treated with long-term antibiotics. His symptoms worsen and he begins to lose sight in the right eye. Evaluation by a neurologist and an ophthalmologist leads to the diagnosis of a pituitary tumor—not Lyme disease. Robert has now has permanent heart and kidney disease, joint pain, and severe obstructive sleep apnea as a result of the incorrect diagnosis and treatment. If you’ve had treatments for Lyme disease and still don’t feel better, please get a second opinion. An incorrect diagnosis can lead to permanent damage or death.
I was always a healthy person. Always in the gym, still am when I can. And anytime something came up, I was apt to see a doctor because I always wanted to make sure I was healthy. That’s the goal of life. That’s better than any wealth you can have is your health. I had a lot of medical professionals confused with my health condition. I was feeling like my severe headache, severe migraines, arthritis symptoms. I had a bilateral carpal tunnel syndrome release, which was unsuccessful, so he sent me over to a Lyme disease specialist. He felt that it was Lyme disease. So I did the treatments and he was getting ready to put me on an intravenous pump for antibiotic treatment and that’s when I started going blind in my right eye.
And that’s when I thought, “Well maybe this ain’t lyme disease. Maybe this is something else.” Come to find out what I thought was Lyme disease, it wasn’t. I went to a neurologist and I consulted with an eye surgeon and that’s when I went for an MRI and they saw that I had a golf sized tumor on my pituitary, which was crushing both hemispheres of the brain, and it was wrapping around the optic nerve.
It kind of made me feel disappointed because you would think that a lot of people in these positions would have picked up on it sooner, but instead they felt that it was all in my head and come to find out it was. It was the size of a golf ball and it was a tumor on the pituitary. They removed approximately about 90% of the tumor and the medication that I’m on now helps to keep the growth hormone levels in check. If I would have been diagnosed sooner I could have went on a medication and shrunk it all together without surgery.
I wouldn’t want to see someone else go through the same thing that I’m going through. I mean I’m still here, but I have days where I can do everything and anything and days where I can’t even get out of bed and if I was diagnosed sooner, I wouldn’t be going through what I’m going through right now. I have three children, a wonderful wife, and I’m lucky to be here still. It was a very trying time for about two or three years with my children and my family.
Naturally, I couldn’t see it, but they could see it and they could feel it. Now looking back in hindsight, I’m lucky that she’s still there and my family’s still there with me. They stuck by me. People need to be a little more knowledgeable about Lyme disease because antibiotics are just given out readily and I think it’s a fast quick fix and it needs to be looked into further because other people had diseases where antibiotics will affect them even worse. If treatment’s not working, there’s got to be another cause.