Again, I'm going a little off my usual wedding / lovely topics- (and if the Delightful Blog people are perusing, as I’ve just signed up, please scroll down. I promise there is some beautiful eye candy and delightful reading below; ). I was recently made aware of a brilliant new documentary from Open Eye Pictures about Lyme Disease and felt compelled to share. Lyme Disease has had a significant effect on my family and I’d like take this opportunity to write about our experience and what I’ve learned in the hopes that someone reading this might gain some insight and have the opportunity to obtain proper treatment.
The common misconception about Lyme disease is that it’s a somewhat trivial joint-related problem that is easily diagnosed and cured with a few weeks of antibiotics. My husband, and thousands upon thousands of other Americans are proof that there is a serious problem in our country due to under or misdiagnosis as the standard test for Lyme Diasease is completely unreliable. Lyme disease has been called a great imitator because of its ability to mimic other diseases such as Multiple Sclerosis, ALS, Fibromyalgia, Systemic Lupus, Alzheimer's, Chronic Fatigue Syndrome or Rheumatoid Arthritis. Many patients do not get the classic bullseye rash which is the only external and distinctive sign of Lyme Disease. There are over 300 strains of the bacteria that causes Lyme disease, and the test kits used by most labs (the ones that are covered by most insurance) don't detect all of these varieties. In many cases, the standard test shows up negative when in fact what you have is Lyme Disease and the doctors (again, usually the ones that are covered by your insurance) simply rule it out as a possibility.
My husband has been forced to live with debilitating symptoms for over 5 years, such as severe joint and musle pain, high fevers, fatigue, central nervous system issues, confusion, mood changes, temporary paralysis and cognitive dysfunction. He was hospitalized several times, once for as long as a month with doctor after doctor scratching their heads. The last doctor who saw him just before he was hospitalized for near kidney failure told him that it was all in his head and that he should see a phychiatrist. The upcoming documentary by Open Eye Pictures, “Under Our Skin”, explores why our primary care physicians and the so called specialists such as rhuemetologists are so ignorant and/or are ignoring the classic Lyme symptoms and are not following up with the more comprehensive testing in order to rule out or to confirm Lyme. Most people, myself included, are not aware of the fact that “The Standard Lyme Test” is unreliable and believe what the doctors have told them. To add insult to injury, once diagnosed, the fact is that many physicians are refusing or are encouraged not to provide sufferers with lifesaving treatment and these seriously ill patients are quite literally on their own. If you are lucky enough to find a Lyme specialist, they typically do not take health insurance as they’re under constant scrutiny as there is serious controversy amongst the medical community, the insurance companies and, of course, our politicians. Thankfully, we stumbled upon a segment on the show Mystery Diagnosis which mimicked my husbands situation and low and behold the featured patient was diagnosed with Lyme. He was unbelievably treated by a specialist who was local to us. (Just 10 minutes away!!!!) My husband is now thankfully on the road to recovery and getting a little better every day. However, he will likely always have medical issues, and no one can predict the long term effects on him. Please take a moment to check out Open Eye’s website and be sure to check out the trailor for "Under Our Skin". It's truly eye opening.
