Let’s just have an honest moment, shall we? Disseminated Lyme (Lyme that has been in your system longer than 6 weeks) has no cure at this point, which means that all treatment is essentially experimental. There are people who get significantly better using certain medicines or therapies, but it doesn’t work for everyone (hence no “cure”). Most people who have been sick for 5+ years end up trying MANY forms of treatment, because you never know what will work! There are so many thoughts about treatment out there, and I just want to be up front and tell you that I will only write about the things that I’ve personally tried, and how I felt about it. This will come over the course of several posts, and I’ll rely on readers to comment about other forms of treatment that they like or dislike.
Antibiotics. Oh boy… antibiotics. This is generally the first type of treatment that your doctor will want to try with you. This probably has the best results of any type of treatment, so let’s talk about it:
Antibiotics are tough on your body, especially if you use them long-term, but they can be really helpful. Your doctor wants to use a serious drug because what is happening to you is serious. Make sense? You have to match the level of gravity. Some people see significant improvement to the point of feeling that they are “in remission”, while some people aren’t really sure if it was helpful or not.
My doctor is fantastic, brilliant, and humble. What more could I ask for? Not only that, but she’s highly regarded in the Lyme community, and under her care I was on antibiotics consistently for 2 years and 3 months. I tried at least 20 different antibiotics during this time. It seemed like every time I had an appointment with her, we switched at least one if not two or three of my antibiotics to a different variety. For a while it seemed random to me, but over time, I’ve realized that she’s been smart with her decisions.
Basically, here’s what happens: your doctor is probably going to first try to treat your co-infections (remember, you probably have a cocktail of diseases transmitted through the tick), not necessarily the Lyme. The Lyme is like the center of the onion, and you have to peel back the co-infections first. There are particular antibiotics that work best with each co-infection. However, after a while of being on the antibiotic, that bacteria becomes smart and figures out how to protect itself, which means it’s time for you to switch to another antibiotic that can keep working on killing it. THIS IS WAR, and may I suggest that you view it that way. You have extremely smart, sophisticated, mafia-like bacteria that are in every cell wall of your body, and your doctor is trying to lure them out, and kill them.
I genuinely believe that the antibiotics I took helped reign in certain debilitating symptoms, and I am thrilled by it. Particularly, pre-antibiotics my muscles were so sensitive to the cold and wind, that even in summer I had to be in thick long-sleeve clothes and couldn’t be outside. The slightest wind would make my muscles cramp for days. That’s nearly gone. I’m 98% better with that symptom! My overall pain levels are much decreased as well. I am less often in debilitating pain. STILL—I have other symptoms that have continued to get worse and worse with time. I don’t blame the antibiotics for making me worse. I simply believe that the bacteria keeps wreaking more and more havoc. SO—I believe they helped me to a certain extent, but didn’t take me all the way to “remission” or feeling like my health was at an acceptable quality of life.
There is a lot of controversy over long-term use of antibiotics. I get that. I understand. And whether you do this is really a personal choice. But what I think people don’t fully grasp is that this disease is serious (particularly when it comes to the heart and brain problems that accompany Lyme). While it is generally not life-threatening, it can still completely destroy your quality of life. You don’t want to let it go unchecked, and it’s okay to try things that you never thought you would – including long-term antibiotic use. It’s your decision, and it’s your body. And you have to fight for your future (as well as your family’s future) in the way that you feel you should.
So, the bottom line is that I am still having extreme symptoms. Antibiotics, for me, have not been enough to achieve “good enough” quality of life. I’m still on the hunt, and I’ve got a lot more treatment options to talk about in future posts. Some of the things you can look forward to are: supplements that I’ve used and loved, oxygen therapy, brain remapping (whoa cool!), and more.
Now, that I’ve been a bit more technical and non-personal, I do want to add a very important personal note. — I make a lot of medical decisions (with my husband’s help) after praying about it. As I said, every Lyme treatment is technically experimental, which makes it all the more confusing to know what is the “right” thing to do. My husband and I love the Lord, and seek His help on all of this stuff. We really do feel like we hear from the Lord when we ask for His help, and it gives us the freedom to step forward in faith with different treatment, knowing that I will be okay. Not surprisingly, we feel like we have made the right decisions for us, and that He’s been with us every step of the way. We have peace and comfort when it doesn’t make sense.
There is a lot in Christianity that has been misrepresented throughout the ages, and if you haven’t had good experiences with Christianity, may I just tell you briefly that God’s kingdom is about love, forgiveness, grace, joy, comfort, peace, and hope. He will show up for you if you ask Him to. The God I have a relationship with is faithful, comforting, gracious, kind, and provides for me. Send me a message if you’re interested in hearing more about how you can know God too.