Yesterday, something happened to a friend that regerminated a seed planted in my brain some time ago. In journalism, we are taught to trust no one. Not even our own mother. The point being, check and doublecheck everything because credibility is crucial when reporting the news.
The same holds true in health care. Trust no one. If a doctor tells you something about your health, you'd better damn well check and doublecheck it yourself because it is YOUR life.
When people become doctors, they take the Hippocratic Oath, promising to uphold high standards of medical care, to be compassionate, and so on. I am here to tell you that is simply not the case in health care today. Many physicians are more concerned about making money and covering their asses than they are about helping people. I won't say every doctor is like that, but the ones who are true healers, who genuinely care about the well-being of their patients, are hard to find.
They are out there, you just have to keep looking. More often than not they will be out of network and you will have to pay out of your own pocket or a higher pecentage co-pay to see such a doctor because of the stigma attached to treating, i.e. attacking, Lyme disease and its associated diseases the way it/they need to be.
Doctors are easily bought and paid for by pharmaceutical companies, insurers, companies that hire them as workers comp physicians, and more. What you have are a class of high-dollar prostitutes who are more concerned about paying off exorbitant school loans or buying a new Mercedes-Benz.
My point is this: If a doctor diagnoses you with one disease and it alarms you, get a second opinion. Don't take one doctor's word for it. Get more tests. Don't just let one X-ray or blood test be the deciding factor. Go to a specialist who knows the disease you have been diagnosed with and see if, in fact, you really have that malady.
By going to the ILADS specialist in California, I discovered that I had had Lyme disease, and quite possibly Bartonella, for ten years. Yes, ten years. See, I got bit by a deer tick in Virginia about six months before I moved to Tennessee. I developed symptoms shortly after moving here and was told by countless doctors countless theories about what was wrong with me. The severe scalp rash I had acquired was brushed off as "folliculitis." The pain in my hands and my forearms and elbows was brushed off as "carpal tunnel syndrome." A workers comp doctor had the audacity to say, "You're a middle-aged woman, get used to it." Other doctors told me I didn't have CT syndrome. Still others said nothing was wrong with me. Still others said I had fibromyalgia. Others suggested I had Lupus. My erythema migrans rash--the classic bull's eye or target rash, was called "poison ivy," and so on.
The fact is, I knew something was wrong years ago. Each day I dragged into work, it was a struggle, but I carried on, because, after all, everything was fine. Nothing was wrong with me. It was all in my head. The negative tests proved it.
Thank God I got bit by six ticks last year and finally got the EM rash from a dog tick. Actually, it was a disseminated EM rash, which meant every organ and tissue of my body had already been infected.
Here you can see a photo of my right leg taken in 2009 with the multiple EM rashes, which were mirror image on the left leg. I also had mirror image EM rashes on either sides of my breasts. A spotted rash on my chest.
A bright red linear rash on my ankle, which turned out to be Bartonella, aka cat scratch fever. I didn't take a photo of it when it was bright read, but you can see the scar it left behind.
After my first 21-day course of doxycycline was completed, the EM rashes returned. Some were even oval.
I even got blisterlike rashes.
At least one internist at St. Thomas Hospital finally called it was it was, Lyme disease, only to back-pedal after an infectious diseases doctor from Vanderbilt told me point-blank, "You can't get Lyme in Middle Tennessee." Another dermatologist at St. Thomas Hospital told me, "We don't even have the tick that carries Lyme disease in Middle Tennessee." So, the internist started calling the rash "erythema multiforme," which is nothing more than an allergic skin reaction.
This year, 2010, I've been bitten by at least five deer ticks. Oh, but I forgot. That alleged dermatologist says we don't have deer ticks in Tennessee!
Thank God for my journalistic training. I trusted none of these poor excuses for doctors. I was forced to go out of network to a Lyme specialist and listed the 57 symptoms I was exhibiting. Thank God, this man knew what to do with me. Thank God he knew that if coinfections were not treated first, the disease would come back. Thank God my sister found that man for me.
My story is not so different from other people who have had Lyme disease and have been misdiagnosed as having MS, rheumatoid arthritis, ALS, Crohn's disease, Parkinson's disease, and more. If left untreated, Lyme will go on to mimic these diseases and more. In fact, I've mentioned this before, one Harvard researcher found that in seven out of ten brains in the Harvard brain bank of deceased Alzheimer's patients that the Lyme bacteria, borrelia burgdorferi, was in those brains. Think of how many Alzheimer's patients actually may have had Lyme disease, which can be treated and eradicated with early and aggressive treatment. But if Lyme is left to its own designs, the consequences can be devastating.
If you are diagnosed with any serious disease, not just Lyme, I urge you all to educate yourselves. Knowledge is power. Don't just take one doctor's word. Seek out a knowledgeable specialist. Research the disease. Get the proper diagnostic tests if there are any available. Don't just take someone's word for it.
Your life depends on it.
(Originally posted February 13, 2009, on MySpace).
