I have something to share with you all…. It’s something that I have debated writing about, but I feel like I have shared so much of my life with each of you and you have been so supportive with me through the good times… now it’s time to share with you some of the bumps in the road.
I have always been assertive, aggressive and high-energy. I bought my first house at 23, I became a manger at an elite software company by the time I was 25, and proudly paid down half of our mortgage by the time I was 35. All the while, I volunteered at school, was a class mom and chaperoned every field trip possible. I loved throwing parties for my kids and loved spending time with them and their friends. I was super-mom, and loving it. Sleep was not something that I needed much of– I figured I could sleep when I die.
The last six months have been without a doubt the most stressful in my lifetime. With the increase of stress came an increase in malaise, hair loss, migraines, joint pain, not to mention the memory loss that I had always thought was “Mommy Brain.” I found myself increasingly unable to function to my fullest capacity at work, word searching and not being able to remember simple events, conversations, names or facts. Soon I was virtually unable to function. I thought I was literally having a nervous breakdown. I went to several doctors and they said that it was depression and that I was an “over-worked mother” and that this was all normal. I KNEW it wasn’t normal. I know my body, and this was NOT normal. An old friend of mine referred me to a hormone specialist, whom I gladly went to see… At this point, I would try anything. I was willing to see ANYONE who could help me. After discussing my symptoms with him he suggested a few hormone tests as well as a test for Lyme Disease. Well, two weeks later when I went for my follow-up I nearly fell out of my chair when he told me that I have Lyme Disease. WHAT? You’ve got to be kidding? I don’t play sports. I don’t camp. My idea of a hike is hiking it to the mall. How can this happen???
I quickly started educating myself on Lyme Disease and all of the symptoms made perfect sense. I am fortunate enough to have a community of friends and family who were able to recommend some of the best specialists in the world. According to the traditional medical community, these doctors are considered “alternative practitioners,” because what they say does not follow the protocol set by the Center for Disease Control (CDC) and the Infectious Disease Society of America (IDSA.) So many of these doctors are not covered by insurance and I would have to pay out of pocket. At this point, I didn’t care. After an extensive physical the conclusion was made that we don’t know how long I’ve had this. But my physician seems to think I’ve had it for some time. I also was shocked to learn that Lyme Disease can be passed in-utero. Therefore, the obvious next step was to get my girls tested. With this, my worst fears were realized. Anna has now tested positive for acute Lyme.
For those of you who don’t have Lyme, this is all very hard for you to understand… I mean, I look normal, I am not missing a limb, and I don’t have cancer. How sick can I be? Those of you who know me well have seen it- my friends who I continue to cancel on because I just can’t function, my co-workers who have noticed my “fog” and even all of you who I am sure have seen some major slip ups on this very blog in the past few months…. It is real, and it is terrifying. I can literally feel my health declining each day. It all came on so quickly, and now I am in the thick of it. One of my friends who also has Lyme said it best. She said “I’ll be lying in bed at night and I can literally feel those little f*ckers moving inside me.” By f*ckers, she means the borrelia burgdorferi bacteria that causes Lyme. It’s a spiral shaped bacteria (also called a spirochete.) It attacks your joints, your muscles and your brain.
I am scared. I am terrified at what this disease has done to me over the past couple of months. I have now become an expert of the difference between Lyme pain and “normal” pain. This is an inflammatory disease, so I am becoming very keen on the burning sensation felt with Lyme. As of late, I have been suffering from debilitating headaches. My doctor requested an MRI and my suspicions were correct– those f*uckers that I talked about earlier???… Well, they are in my brain. I am terrified of the road ahead. The other day I saw a homeless man on the street corner who appeared to be Schizophrenic. Before I always wondered “How did they get here? How could they just let go of life?” I can see how someone can stumble very quickly. Not only am I fighting for my own health, I need to be an advocate for my daughter to protect her from this painful existence. This has not been easy– I have been fighting with our Pediatrician, my general practitioner and even my husband about the “right” protocol for my sweet little girl. Everyone tells me that she isn’t showing any symptoms– do we really want it to get to that point?
I worry. I worry that I will run out of steam. I worry that I will become that Schizophrenic man on the street corner, and I worry that my baby’s mental and physical health will take the same turn because we are turning a blind eye.
I have been on Doxycycline for four months and my symptoms have only gotten worse. This week I started a new protocol (see that pill box above?) – a “cocktail” of antibiotics, very strong antibiotics, that I may have to take for years. I have spent thousands of dollars in the past four months on doctors appointments, medications and physical therapy. If this treatment doesn’t work, the next step is to have a port implanted in my body that will disperse even stronger medications.
If there is one positive thing that came out of my mother‘s 16 year battle with cancer, is that you need to be your own advocate. The doctors are merely consultants and YOU make the decisions. So- I will fight this. I will regain my health, and I will make sure that my precious little girl is as happy and healthy as ever. After all, I am my mother’s daughter.
If you have questions about Lyme Disease, here are some things you can do:
1.) Educate yourself of Lyme. Prevent you and your loved ones from going years without a diagnosis.
2.) Sign this petition to push for the IDSA to review new data and work with the top professionals in the field of Lyme research.
3.) Learn from my mistakes.- Don’t wait. If your “medical” doctor is dismissing your concerns. Ask for Westerm Blot Antibody Test with a CLIA approved lab that specializes in testing tick burned diseases. (IgeneX, MDL or Stony Brook are recommended,)