As you likely imagine, by this point I am feeling very disappointed and hopeless. Not knowing if I would ever find out what’s wrong with me is very disturbing to say the least. At night while my family sleeps, I pray to God to guide me in the right direction to get the answers I sought. He did just that!
In a previous post I mentioned that I met someone who also had Chronic Lyme Disease. I reached out to her to gain more information about her treatment and the doctor she that was treating her. After many hours of discussion and research, my husband and I decided it was worth a shot. You see the doctor that I would begin seeing is located in Louisiana! 6 hours away from where I live in the Austin, Texas area. The costs of travel and the unknown costs for copays, labs and potential medicine was worth me getting the answers I needed and longed for. You may be asking why I need to drive all the way to Louisiana. What I am learning is that in Texas there are not many doctors who are Lyme literate (more to come on that) and I have heard of people with Chronic Lyme Disease traveling as far as Chicago and California to seek treatment. I know, it sounds crazy but it’s true.
So off we go to Louisiana. As you can imagine I am feeling a wide range of emotions at this point. Excited about getting some answers to scared of what I might find out to anger that I had to drive all this way because my own doctor brushed me off. My wonderful husband is doing a great job at keeping me calm and focused. He’s great at that…that’s one of the reasons I love him so.
We arrive. We walk in an there are several patients in the waiting room. My husband checks me in while I get situated in the lobby. I am comforted by the many scriptures posted around the office. God knew I needed to see that. When I finally get called back to see the doctor, I provided him with all my medical records and he asked me a series of questions and such. He did an exam, drew blood for lab work and some x-rays of my head. Based on what he saw in my file, my symptoms and his examination he determined that there was a strong likelihood that I did in fact have Lyme Disease as well as a Co-Infection of Lyme Disease called Bartonella. To be completely certain of a positive result, he wanted to wait to get the blood tests back.
At this point, you may be wondering just what kind of symptoms I am having so I thought I’d share some with you (this is not all my any means):
Hand tremors, Brain Fog, Short Term Memory Loss, Unable to Focus or concentrate, pain, tingling and numbness in my feet/legs/arms, shooting pain in legs, insomnia, loss of balance, involuntary muscle movement, involuntary movement of limbs, weakness in hands/legs/arms, dizziness, abdominal pain, vertigo, extreme exhaustion (all the time), low-grade fever, loss of voice, eye infection, tenderness in the crown of my head, swelling and tender joints (fibromyalgia),blurred vision and back pain. In total, I have a combination of 140+ symptoms. Not all at the same time and not every day. Each day is different, so I never know how I am going to feel when I wake up each day.
Finally after about 4 weeks, I go back to Louisiana for my second visit and got my test results. I tested positive for “Chronic” Lyme Disease and during this appointment he also determined that I have Fibromyalgia and of course the Co-Infection Bartonella. He started me on a treatment plan which consisted of a combination of various antibiotics and other medicine that would get me started. He could mot make a determination how long this treatment would last though it has been said that for every year a person with Lyme Disease goes misdiagnosed, you need about 4-6 months worth of treatment. I have been misdiagnosed since 2003…
On the way home and I am feeling relieved that I finally got some answers. I am happy and a little nervous about what lies ahead, but with God on my side I know that I am up for the challenge!
Thanks for reading,