Thursday, January 17, 2013

Borrelia Miyamotoi

This is a picture of me three years ago, shortly after I finally figured out why I was so sick: chronic Lyme disease--a controversial illness whose very existence is hotly debated by doctors. Is it real? Is it made up? While doctors are arguing, people are dying. I'm one of the lucky ones--though I came close, I didn't die. 
This picture is incredibly difficult for me to look at. This is me at my sickest. I was so sick and, despite the fact that I was eating like a teenage boy, I had dropped 20 pounds from my already slender frame. As you can see, my size 0 jeans are hanging off of me.

Though much of my life from that period is a blur, I remember perfectly the day this picture taken. I was in so much pain that I could barely stand up. See that death grip on the rail? See the way I'm standing, trying to take the pressure off my legs? My body was shutting down and I honestly didn't know if I was going to make it. Every day was a struggle to survive and the pain was just unimaginable.

I can't understand how anyone could be allowed to so obviously waste away, yet be told by doctor after doctor, "There's nothing wrong with you," or "You're just depressed." "We don't have Lyme disease here." I was so weak I often had to be carried; there were many days when I had to crawl to get from room to room.

Thankfully, miraculously, I found a doctor who was willing to help me. She believed me when no other doctor did. Because of her, I now look like this. It took two and a half years on antibiotics, but I'm now back up to my normal weight and I'm feeling wonderful again!

Today, several articles came out announcing a new tick-borne infection that was recently found in humans-- known at this point as Borrelia miyamotoi. According to this article, scientists identified Borrelia miyamotoi in ticks in Connecticut over a decade ago. Hold your hats; here comes the controversy: "Dr. Fish found B. miyamotoi in American ticks 10 years ago, but was repeatedly refused a study grant until the Russians proved it caused illness. “It’s been like pulling teeth,” he said. “Go ask the N.I.H. why.”

The article goes on to say: Most medical authorities, including the Centers for Disease Control and Prevention and the Infectious Disease Society of America, take the position that “chronic Lyme disease” does not exist and that those victims either have other illnesses or are hypochondriacs. They oppose the solution demanded by some self-proclaimed victims: long-term intravenous antibiotics.

Go ahead and look at that top picture of me again. How much longer could I have lived without treatment? Because of the fragile state I was in by the time I was finally tested for Lyme disease, a short course of antibiotics did nothing to eradicate the disease from my body. I was found to be suffering from not only Lyme disease, but several other tick-borne diseases that needed to be addressed before I would be well again: bartonella, babesia, anaplasma.

According to the studies of Lyme disease versus Borrelia miyamotoi, the two diseases have very similar symptoms and can be difficult to distinguish. One interesting thing to note is that B. miyamotoi doesn't cause the bulls-eye rash that Lyme disease causes. Both diseases are treated with antibiotics. Even with a bulls-eye rash, it can be nearly impossible to find a doctor who will treat you for Lyme disease. It's too early to know how many people with the Lyme-like symptoms of B. miyamotoi were turned away because they didn't have the bulls-eye rash associated with Lyme disease.

The tests for Lyme disease are horribly inaccurate; tests for B. miyamotoi do not even yet exist. That means the doctors are going to have to start believing their patients when they come in with Lyme-like symptoms. That means it is time to drop the hypochondriac stigma that has been attached to Lyme disease and other tick-borne illnesses.

It's hard to read this about the new tick-borne illness:"We've known about this bacterium for a long time -- at least 10 years," said Sam Telford III, a professor of infectious disease at Tufts University in Medford, Mass., who co-authored the report with Berardi. "It's been under our nose all this time, and a lot of us just ignored it until there was this case report."

Perhaps the medical community will take a lesson from B. miyamotoi--There is MUCH to be discovered about tick-borne diseases. It's time to drop the controversy. Here's to hoping that 2013 is the year that tick-borne illnesses are finally taken seriously!

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