It has been some time since my last post and even longer since I provided an update on my health. There is so much that has happened. I’ve been connected to so many people struggling with Lyme Disease and/or searching for answers. Our faith, church, family, neighbors and friends have continued to bless us with support. I felt like our life had been flipped upside down when I really started to understand what this disease had and is doing to me. Every step of the way, God has provided me with answers and peace when I had to make difficult decisions.
It has been hard to gather my thoughts and there has been a lot for us to process. Since I had a PICC line inserted in November I have been treating my Chronic Lyme with IV antibiotics and meds, supplements, and oral antibiotics. I have made some progress, I have had my share of really bad days and occasionally I get a glimpse of my former self. Neurologically I have had some setbacks and the attacks I was having are consistent now, but are a sign of the treatment expelling the toxin into my blood or what we Lymies refer to as die off. I have been able to remain aggressive with my treatment, but it has not been without the constant thought that I don’t want to do this anymore. That being said, every single time I have wanted to give up He has provided a new source of strength or someone who was in need of strength and suffering.
We have increased my IV’s, I remain on several oral medicines and antibiotics. Throughout treatment medicines are combined and shifted to make the treatment effective. 3 weeks ago we replaced Minocycline with Biaxin to begin treating for a malaria-like bacteria that I have exhibited symptoms of for the past few years. My reaction to Biaxin amplified my Babesia symptoms and my tachycardia has worsened which is all part of the bacteria fighting back. I started an antimalarial medicine a few days ago and will remain on this combination for the next 5+ months. I will fight this battle with all my strength.
After much prayer and looking back at the health issues our children have had (varying from a vascular tumor, cyclical vomiting, and benign hydrocephalus) I felt that there had to be a correlation. We anxiously had all 3 tested and sure enough this was passed on to them congenitally. Contrary to what the CDC acknowledges this is passed in utero and we are living proof of this. We have been treating them for 2 weeks with oral antibiotics and for the most part they have been troopers. They have had their ups and downs, but are resilient and I cannot help, but recognize what a miracle these 3 kiddos are to us! When their results came back positive I felt an overwhelming sense that my hubby had to be tested as well and today brought more devastating news. He has more positive bands/markers than the rest of us, but my number on one test is the highest. He shows more past antibodies, but is in an active state of infection and is CDC positive. This poses a lot of questions about who had this first and why its impacting us all so differently, but one thing is for sure…. God has a bigger purpose for the 5 of us, making those questions irrelevant. For now, I am in a state of sadness, but I know that cannot last for long and is not where God wants me to be. I don’t know what the future holds, but I know the promise of a better life with Him and give thanks for that hope. I will continue to do my best to walk by faith, because my sight has been distorted both physically and emotionally. We are fortunate to have so many people that He has surrounded us with and the privilege He has entrust us with to help others with this disease.
God is using you and your trials to bring about an amazing testimony! you are stronger than you know, and those of us blessed to surround you will be walking this walk with your sweet family! we love you, and we entrust you all to the One Who holds you close. thank you for sharing your heart with us.
You and your family are in my prayers daily. I am amazed at your strength and resilience. You inspire me to be a better wife, mom and person in general. I pray that you will continue to receive answers and that your health and your sweet family will improve.
We will continue to stand by you during this trying time and pray that each of you receive the treatment you need to fight this horrible disease. We love you!