To whom it may concern:
I was possibly bitten by a tick in October of 2010 while I was pregnant and have been experiencing a long list of symptoms ever since. In July of 2011, I was diagnosed with Lyme disease after a positive test at Beth Israel Deaconess Medical Center. I was given 21 days worth of Ceftin for treatment and on day 22, my life changed. I was overcome with vertigo so severe that I spent many days laying on my sofa. I was afraid of carrying my 6 month old son for fear of dropping him. I had severe panic attacks, loss of hearing, buzzing sensations throughout my body, muscle weakness that made my legs so weak that I felt like I was walking through three feet of mud. I had a hard time breathing and felt “winded” if I walked just a few steps with my children. I made several phone calls, desperately seeking answers during that time. My whole body was shutting down on me and no one believed I was sick. It must be anxiety or stress. I am not exaggerating when I say that I thought I was going to die. I am unable to put it in to words, the intense fear I felt every time someone told me that I was OK. Can you try to imagine what it would feel like if you were very sick…for months…barely able to make it through one hour of one day, when months before you were running, taking long walks with your children, having dinner and drinks with friends…and then imagine all of your doctors and some of your closest confidantes rolling their eyes at you as you cry out for help. For me, it was the most terrifying experience. I even thought of starting a journal for my children so that they would know who I was if I died. I knew that this was not something that I could get over by mentally wishing this away. I knew that this was something more than just depression and stress.
Months later, I got the help that I needed by the most compassionate doctors and nurses who have risked their jobs by treating outside the treatment guidelines for Lyme disease. I try not to think of where I would be without them or if this had happened many years ago. I don’t have to. I see the results of what happens to those who were unable to get help early enough, at our support group. I see the pain in the eyes of parents whose children have been affected by Lyme. What do you say to a child who asks you if they are ever going to get better? After months or years of trying to find answers or a successful treatment plan, how do you encourage your child to stay strong or to have hope that the worst will be over soon?
Now almost three years later…I am better. I am better on antibiotics and can do almost everything I did before I got sick. I can’t drink as much as I used to and I occasionally suffer from headaches, buzzing sensations throughout my body, shortness of breath and some cognitive stuff. I have become accustomed to feeling this way once in awhile and can deal with these symptoms. But there’s just one thing. I can’t stop taking my antibiotics without spiraling back into that deep, dark hole I was in soon after I was diagnosed. My symptoms come back in full force. First, the intense headaches, then the buzzing, confusion, hearing loss, shortness of breath and swollen lymph nodes. And now more than ever I am feeling the pressure to get better. Life needs to move on and quite frankly it must be annoying to be with the “sick girl” who thinks she’s sick but really isn’t sick. You know that feeling I felt back in August 2011? It’s not quite as intense, but it sure does suck when someone doesn’t believe you when you tell them that you still aren’t feeling well. How could I possibly still be sick after being on antibiotics for almost three years? Are the antibiotics doing more harm than good or does it matter because my life without them is not much of a life? And to that reporter that told some people that there is absolutely no evidence that Lyme can stay in your body after three years. That statement has come up on several occasions and I wish you thought about that before you spoke. I’m coming up on my three year mark, so I’m looking forward to many, many healthy years without medication.
So, what is wrong with me? Is it all in my head? Can I beat this illness by just going off all of my antibiotics and changing my attitude? Can I simply just focus on being positive and remove all thoughts of being sick…and get well? Some people have said that it will take a few weeks for my body to feel normal again after I go off antibiotics, so the symptoms I feel during that time will eventually go away. But these aren’t the people that were there for me in the beginning…that believed in me and treated me when I was very sick. So many suggestions, so much advice from those who have never had Lyme…or whatever it is I still have if I no longer have Lyme. I don’t have time to read all of the medical journals, new research articles and documents. I just have my instincts. My instincts in 2011 told me that I was in fact very ill, and not crazy. My instincts today tell me that I need to change my treatment plan, that I’m not well enough to go off antibiotics. There is something still “wrong”. I don’t know if it’s Lyme, another infection or virus. I just know that I need more time. I’d like more answers, but I don’t have them. No one does. And for those of you who have your doubts, I just need you to believe in me. I need you to know that I am doing the best I can to fight this…and I will.