Our appointment went well this morning. We went in with our questions and walked out with answers to almost all of them. It was confirmed that what I went through last Saturday-Tuesday was a herxheimer reaction. This is such good news! This means that we are making progress and that the meds we are on are working. Dr. Salvato put in orders to continue the midline. We asked her what the plan was when this midline had to be removed and her response was to put in another one. I liked this answer as well. I don't know where they will put it since the reason its in the right arm is because they couldn't find a vein in the left arm, but I am going to leave this up to God. I was so afraid that we would be on to something that works and than the midline would have to come out. As I have always said, the midline is my best defense against this disease. She ran another Lyme test today with the expectations that there will be more titres positive on it. What I have read is that some people can have completely negative tests but once they start treatment (the antibiotics) the test shows up with positive titres. So, I will be very interested to see how this comes out. Keep in mind that this is the Western Blot done through LabCorp and not through iGenex. The last one done through LabCorp only had one titre on top and one on bottom positive. Later, Dr. Salvato will be doing this test looking for no titres positive and will determine treatment is done when we have two tests in a row return with 0 titers positive. She is also retesting our CD57. This is another blood test that is used to verify Lyme. My first test was 28 which she called "pathetic" today and said that we want that to be 180 before we call treatment done. I like have "goals" or ways of measuring our progress. Keep in mind that Lyme is never considered "cured" but people are said to be "recovered" with a chance of it coming back. There is no sure way to tell if all the bacteria is gone.
We asked today about co-infections and at this time non are detected. This is also a very big thing. It is unusual for Lyme patients not to have co-infections. She only tested for 3 of the big ones and even though one of my levels for another test was high indicating a co-infection, non are apparent at this time. Co-infections can further complicate fighting Lyme so this is a big positive for us.
We talked through the other meds and it was decided to continue on all them. I brought up my lack of sleep and she prescribed something to help me sleep at night. I thought two meds Dr. Forester put me on were to help with this but she said they only helped with the joint and muscle pain. This is pretty controlled (except during the herx) so I'm glad we aren't messing with them. She also gave me a prescription for Maxalt which is a med for when I had migraines. This will help with the really bad headaches I got around and during the herx. Its good to know I am armed and ready. Bring on another one. I'm ready for some more bacteria to die.
I got to go watch Becka do gymnastics today. They rescheduled her Thursday rehearsal for today. I begin to tell you how much it does for my pysche to watch her. I plug in my headphones (because the room gets pretty loud with parents) and I watch her go for two hours. There is something about watching her that makes me have more energy (so I think sitting there) and makes me just "happy". I don't know what it is but its good for the body. Maybe even an "alternative therapy" for me. I love watching her over come and accomplish and succeed and have fun. It is rejuvenating and where the disease has aged me, watching her brings back life. Its pretty cool. I remember sitting there today so thankful that I can go and watch her and go and watch Maddie dance. I am so thankful that I am not bedridden or wheelchair ridden that I can't go and watch my children. I can't clean my house or make meals right now but I can watch my children grow and enjoy them as they do the things they enjoy. This is a HUGE blessing! Thank you God!!
One thought I wanted to share that I hope has come across my blogs. I have several books I have picked up from the library about Lyme or about christian books about overcoming adversity and I was staring at one sitting on my night stand the other night. Its called "When Bad Things Happen" by Kay Arthur and I have not picked it up and read it. I stared at it and I realized why I haven't read it. I found out about the book from another lady dealing with Lyme and I was hoping to find something in it that would point me in a direction in God's word. I have had a difficult time reading my Bible because of a thirst and hunger for something very specific but I didn't know what it was. I struggle with the title of this book because I don't look at my circumstances as necessarily a bad thing. I'm not sure I can explain this. Don't get me wrong. The last 10 years have been a challenge and I don't care for God's timing at all. I have worked through anger at this disease. But I am not angry at God. Never have been. Disagree with Him...yes. Lacked understanding..yes! But not angry at Him or at anyone. I know that my God has a plan for me. That sounds so cliche anymore in the christian realm. We often interpret it as something positive but the Bible says we will have trouble. He doesn't say "if". He says "when". I know that God has a bigger plan and I am just a piece of His grand puzzle. I believe my Lyme involves so much more than me. I believe He is using it to teach me but that He is using it to work on others as well and I will never know how far out the ripple goes. Knowing that there is always a reason for things (there are no accidents or coincidences) I look for what He may be doing. He is always up to something....always. I believe among the many things He is trying to show me, one of them is trusting and relying on Him. I believe another is learning to ask for help. It is weird to put those two in the same paragraph but I believe people are His hands and feet. If I deny or don't ask for help than I am like the guy on the roof that is waiting for God to help him. Every possible thing comes his way to help and he denies them all. When he gets to heaven he asks God why God didn't help him and God replies, "I sent you a boat, a helicopter, ....".
My God has my back and is working on me. It doesn't mean its easy or fun but I feel Him at work in my life and I know He is there and I wouldn't have it any other way. Its real and its alive and you can't find anything like it on this earth.
