My journey with Lyme has been a difficult one. Because of it I want to help people so that they don’t have to suffer as I have. I’ve been dealing with Lyme since January 2011. At that time I didn’t know what was wrong. I sought out many doctors and got no real answers. I was told my case was fibromyalgia-like in nature, but it didn’t quite fit. Blood work results would come back normal. I saw a rheumatologist who didn’t believe I felt the way I described. One neurologist thought I had MS or ALS and after many nerve conduction studies and some MRI’s this was ruled out. I definitely did not feel normal. Joint pain and extreme fatigue were probably the worst symptoms. I remember waking up some nights feeling like someone was drilling a hole in my knee. Some neurological issues such as forgetting where I was, feeling dizzy and mixing up words were some other concerning symptoms. At one point I began to feel like I was dying. It’s no joke.
The lack of answers and continued misery prompted me to do some research on my own to figure out what was going on. After months of this I started thinking it was Lyme. (Lyme is often referred to as the great imitator because it can present itself to be similar to numerous other diseases, especially those of autoimmune nature.) Then I watched a documentary about it called Under Our Skin. After this I was sure I had Lyme. Listening to those peoples’ testimonies was like listening to my own.
I found a local doctor who see’s many Lyme patients. She diagnosed me on March 14th, 2012. I felt both relieved and devastated. I was put on antibiotics and stayed on them for 8 months. They did help but only for a time. At some point I felt that they were doing me more harm than good so I told my doctor that I couldn’t take them anymore. This led me to explore and try alternative methods of treatment. I developed my own treatment plan using herbs and various other supplements. I have no doubt that what I have done on my own has far surpassed the benefits I’ve received from physician that I have seen.
To go on a little tangent about doctors . . . For some reason Lyme has become really “political”. Some people in the medical profession don’t believe in Lyme. Some say it doesn’t exist in Texas and other parts of the US. TREATMENT AND TESTING ARE FAILING US. I hate to use caps but this is a crime. And after talking with other Lymies yesterday, the medical care we receive from those practitioners we expect the most from, aren’t getting us significantly better. I keep hearing of people who travel great distances and spend countless dollars looking for answers outside our typical western, allopathic, mainstream medical system. I myself have discovered some of these non-traditional approaches, but I can’t afford them in the combination that I need to use them. And I can’t blame those that don’t take insurance. Because with politics comes a lot of scrutiny, much to our disadvantage. And this is about as brief as I can keep this topic.
I returned to work as all of this was unfolding. I have no idea how I managed to hold down my job and even excel and advance to some extent and take care of my family. I was trying to put on this act that nothing was wrong. This was my biggest mistake. My body needed rest and I put myself on autopilot for a while.
This experience has been life changing. It has taught me to be resourceful. When one thing doesn’t work, look for something else that does. Don’t be afraid to think out of the box (even when people around you can’t understand). So today I am loads better. My doctor says I still have Lyme in my tissue. I do have some issues with pain but these are far less frequent or intense. I can do and participate in a lot more “stuff”. I don’t come home from work and need a nap very often or feel the need to “call it a day” at 7:30 in the evening. I have very few and far between episodes of fatigue. I can have a lot more quality time with my kids. I can be on the giving side of support, more than the receiving most of the time. Lyme is a bigger problem than it is given credit for. I believe many people have it, they are just told it is something else. Sitting in a crowded waiting room for my doctor, that many of us Houston Lymies see, listening to people talk, makes me want to stand up on a coffee table and shout “Your symptoms sound like Lyme, has your Doctor tested you for that?!!”