I have Lyme Disease. I sat here for awhile trying to figure out how to start this so I thought I’d just come right out and say it. After years of searching, many tests, too many unsuccessful treatments, countless dollars, blood (so much blood!), sweat, and tears, it seems that we finally know the core of what we’re fighting. I say “it seems” because I’ve gotten my hopes up and crushed so many times that it’s difficult to let myself believe that we may have finally gotten to the bottom of it.
Many people think that Lyme will be cured with a round of antibiotics but, once Lyme has been hanging out in a body for a long time, it becomes what is referred to as Chronic Lyme Disease or Post-treatment Lyme Disease (in my case, without the original treatment) and antibiotics are useless, even potentially dangerous. I also have one of the most common Lyme co-infections, Mycoplasma Pneumoniae. These little “bugs”, for lack of a better word, do not have a cell wall, which renders them completely resistant to most antibiotics. They can also fit pretty much anywhere they want and “hide”, making it very difficult to get rid of them. It’s important to me that people understand why this is going to be such a difficult journey so I would love it if you read this article on Lyme and Mycoplasma for further understanding. It appears that the Lyme treatment covered by insurance is antibiotics and antibiotics will not work for me. Life cannot be simple, but I believe that’s when God works in the biggest ways.
It always takes me awhile to process things so if I’m a complete wreck for awhile, please excuse me! I received the news Monday and wrote the first draft of this blog but then I pretty much shut down/broke down. Now, since you’ll be seeing me share Lyme articles all over Facebook in an effort to learn and teach, I guess it’s time to go public. Here are only some of the emotions I can put into words:
Anger. I am allowing myself to be angry for awhile. Yes, I’m angry that this happened and that I did not notice a tick bite. Ticks can be very tiny, bite, and then drop off without being noticed. But mostly I’m angry at the doctors who dismissed me. I have drained our resources going from one doctor to the next only for them to tell me I was fine. I am angry that I was made to feel crazy by those who told me it was all in my head. I am angry at a medical system that doesn’t cover proper testing. In case you are not aware, traditional Lyme testing only catches 56% of Lyme cases. And insurance very often does not cover the appropriate testing. Again, I stand by my view that no one profits from people who are healthy so testing and treatments that will make them well are not covered. No one will ever convince me otherwise and I will be angry about and fight against this pure evil crime against humanity until the day I die.
Back to the doctors. Where would I be if I had listened to them? I shudder to think. I would be on so many drugs! And they wouldn’t know about my gene mutation (MTHFR) that makes me more sensitive to chemicals so they would have certainly caused much more harm than good. My symptoms would only continue to be covered up as they multiplied, rather than finding the root cause. Oh, and I would not have had a Lyme test at all because, as my Rheumatologist said, “there’s no Lyme in Tennessee”. Well, dear doctor, I’d like to introduce you to EXHIBIT ME.
And, where would I be if the doctors had listened to me? I would not have been made to feel crazy. I would have been tested, and therefore, treated, far sooner. My diseases would not have progressed and likely caused permanent damage to my body. I may not have lost my job and tanked our resources. I sure as heck would be a lot less stressed! So much needless worry for my family. But, enough with the “if onlys”. Dwelling in “if onlys” helps nothing and is very toxic to the mental state. God can, and will, use the bad to make good… always!
Happy. I am so happy, actually ECSTATIC, to finally have an answer! Though I wish it wasn’t necessary, I am happy to be one more case proving to the medical professionals that they need to take their patients more seriously. I am happy to be an example to people who take what their doctors say as gospel and encourage them to be the expert in their own bodies. I’ve been the exception to many of my doctors’ preconceptions and I make certain to go back and inform them for the sake of others. I like to think that those doctors may not be so hasty to dismiss in the future. I took one… or ten… for the team. You’re welcome, TN!
Sad. I am so sad for the life I have lost. Granted, I could have handled the situation better, but I have tried! I’m sad for those who don’t have the resources to get proper testing and treatment, who don’t have loved ones who would cut off their own body parts if they thought it would make them better. I’m sad for the people who don’t know they can question their doctors.
Afraid. I’m afraid to get my hopes up again. My doctor is putting all of her faith in this treatment. She believes it will heal everything – my malabsorption and anemia, my Sjogren’s, depression/anxiety, perhaps even my thyroid. I’m terrified of being crushed again. I’m afraid of the potentially grueling treatment. I’m afraid it will come back or I’ll be bitten again but she will put me on a preventive herb after I complete the treatment. I’m afraid I have already, or will give it to Jason. Yes, it is very possible to transmit Lyme to your partner. We will eventually have to get him tested too.
Determined. I am determined to give this my all. I will be eating a completely clean diet minus eggs (due to a sensitivity), which isn’t a whole lot different than what I’ve been doing already. I can certainly do this if it means helping the treatment protocol be most effective. I am determined to feel what it’s like to be healthy. I truly do not remember the feeling of “good”, and when I finally get to answer the “how are you” question with “good” again, I may burst into happy tears.
Hopeful. Despite my resistance to hope, I can’t fight it. It’s creeping into my heart. I am hopeful that I will be well again. This was my last try. I had said that if this test came back negative, I was done. And my doctor wouldn’t have known what else to try anyway. I kept singing “Thy will be done”, even if I wasn’t exactly sure I meant it. If the test had come back negative, my fight was over. If I had been tested for Lyme first, my body may not have been able to handle the treatment. I was so weak. Other treatments have helped me heal some and who knows, maybe now my body is finally ready to fight this. Though I am not at all pleased to have Lyme, God knew I needed an answer and he finally gave me one.
Thankful. I am so thankful for my brain and my willingness to question and advocate for my own body. I am incredibly thankful for the doctors who do listen and who don’t give up on me. I am thankful for the ones who were willing to rebel against the system with me. I am thankful for the people in my life who have helped me get to this point. I am overwhelmed with emotion when I thank God for a husband who walks beside and suffers with me, for parents who would bleed dry if they thought it would make me better, and for the dear friends who hold my hand, listen to my meltdowns, and encourage me daily to take another step. I could not do this life without any of you! I am so thankful for the prayers offered on my behalf. It overwhelms me to think of people going to God for me. I am thankful for God and his timing. It is never mine, but always best. I know that I will look back on this journey and see God making much beauty out of rubble. God is really the One fighting this war, and I am very excited to see how he is going to do it!
“The Lord will fight for you; you need only to be still.” – Exodus 14:14
I have made this sound like a closure letter, and in some ways maybe it is. I know the thing we are fighting. But, a fight it will be for sure! I covet your constant prayers! I did not expect to have such an emotional reaction to this news and I am really struggling to not lose my mind…which is why I laughed when I found out the Celebrate Recovery lesson last night was on sanity. Well-played, God! I could not have fathomed the expense of treatment, which is not covered by insurance, so my doctors and I are still trying to figure out what I’m going to do. Please pray that God will provide. Pray that God will strengthen my immune system to fight this. Pray that the side effects and die off symptoms will be tolerable. Pray that my depression and anxiety will not overshadow my determination. Thank you so much for reading and walking beside me through this. And thank you, God, for hearing our prayers!