On May 5, 2011, I was diagnosed with Advanced Lyme Disease (otherwise known as Chronic Lyme.) My story is not different than other Lyme fighters. I have been to many, many medical professionals: primary physicians, GI doctors, endocrinologists, OB/GYN's, dermatologists, psychiatrists, naturopathic doctors, acupuncturists, chiropractors, allergists, orthopedic doctors, eye doctors, various surgeons and more. I have had more than one diagnosis. More than ten, actually. Probably many more than ten. I have been offered anti-depressants more times than I can count. I have been told my symptoms are nothing to worry about or will go away with time. I have been told on some of my worst symptom days: "You look fine!" or "You don't look sick!" I have been put on a plethora of different creams and medications for everything from intestinal distress, sinus issues, pain, cysts, stress, depression, hormonal imbalances, nausea, dermatological issues and many others I have long forgotten. I would need to use two hands to count the number of cysts that have been cut from my body. Friends and family have gone from caring to sympathetic to annoyed and sometimes back again. I have been told more than once that I am a hypochondriac, sometimes by people I loved and respected.
Over the years, I have vacillated between feeling misunderstood, disgusted, hopeful, downright crazy and very, very alone. So, one might think that having a diagnosis would be a tremendous relief. And one would think that with a diagnosis, all of these feelings would instantly disappear. Perhaps they would with another disease, but not with Advanced Lyme.
On the day I was given a glimmer of hope from a potential treatment plan, the harsh reality sunk in. The harsh reality of a medical community and a government who are uneducated and out of touch. Or the discouraging fact that there are only a few LLMD's and LFMD's (that's Lymie code for Lyme-literate and Lyme-friendly doctors) who will treat at great risk to their medical license and reputation. Then there are the tests for Lyme, which are inadequate and, more often than not, inaccurate. Or how about the many Infectious Disease doctors and associations who don't even believe in Advanced Lyme? "Take thirty days of antibiotics and call me in the morning" is their advice. "If you still have symptoms after 30 days of antibiotics, it couldn't possibly be Lyme." One of the most discouraging discoveries for me was that the people who get it, my fellow Lymies (many who I met through online message boards shortly after my diagnosis), who were all very supportive and sympathetic, would become silent as soon as I would ask for a referral to a local LLMD, someone who would believe, understand and treat. 'People hold their doctors close,' one brave soul finally divulged, 'because if they are found to be treating Lyme, they could lose their license and their patients would lose their doctor and along with it, their much-needed treatment.'
But, despite all of these discouraging discoveries, the most devastating to me was the heart wrenching news that Lyme Disease may be sexually transmitted and can be transmitted to the fetus during pregnancy and possibly to baby during breastfeeding. Although my husband and our children appear healthy, there is still a good chance that it is either dormant, waiting for a trigger, or they are showing signs that we just aren’t Lyme-literate enough to recognize. There aren't words to describe how it feels to know I may have infected those I love most with a debilitating, life-threatening disease that could alter their lives in ways one wouldn't wish on their own enemy.
I will begin treatment in a few months, after my immune system is strong enough to handle it. Some people with Advanced Lyme do not respond to treatment for some reason, but we are hopeful that is not the case with me or, if need be, my family. If my body responds to treatment, my doctor informed me that it could take anywhere from 6-18 months for me to get back my health, my energy, my life. The treatment is often compared to chemo because of how incapacitating it can be.
I encourage you...PLEASE research this disease. It is believed in Lyme circles that this disease is very undiagnosed and there could be hundreds of thousands of people living with it right now. It is also very misunderstood in the medical community, which makes it difficult for people suffering from this disease to get proper treatment. One of my best friends struggles to this day to receive a diagnosis because certain bands of the disease are not recognized by the CDC. The CDC reports there are 20,000 documented cases of Lyme in the U.S., but predicts those numbers are closer to 200,000. If you haven't seen it yet, watch Under Our Skin, a highly acclaimed movie about Lyme Disease and the many challenges associated with it, now available on Netflix. If you are interested in donating toward research for Lyme testing and treatments, please visit Turn The Corner Foundation. Lastly, here is a site where you can find a lot of great information. Something important to note: "Fewer than 50% of patients with Lyme disease recall a tick bite."
This blog will be many things. It will be a place where I can document my journey with Lyme. It will be educational and hopefully bring awareness of this disease to family, friends and anyone who cares to read. To some it may seem at times self-centered, discouraging or just plain depressing. But I hope to others it will be informative, enlightening and to my fellow Lyme fighters, encouraging and motivating. I promise to be honest and considerate and not withhold information that could help others who are also facing this daunting foe. At the same time, I recognize that some information can hinder our fight and will take great care in these situations. I understand that we are all fighting different battles, some more challenging than my own, and I hope we can serve as a support system to each other, through good times and bad. As I heal, I'd like this blog to be a source of hope and inspiration to those seeking information on winning the fight against this disease. There are few sites out there that offer this type of encouragement and there is probably a reason for that! There is a saying in the Lyme community: "The people who get better are not sitting online writing on message boards all day. They are out living their lives!"
Right now, my family and I are embarking on the biggest fight of our lives. There will be times we are at the top of our game and others where we may appear down for the count. But mark my words…