Refuse to sink - My journey battling Lyme disease

Sunday we went for a bike ride as a family. My husband loves mountain biking and really wants me to start doing it with him. It was a bit crazy - the two of us, my husband pulling a trailer with our youngest, two boys on bikes with training wheels and our oldest on her own bike. But we had fun. I forgot how much I enjoy biking. I went down a hill and got a little too confident and decided to try to go down a steep, narrow embankment (made entirely of loose dirt) because I'm so cool I can't just follow the trail. Needless to say, I ate it good. I landed on my side and woke up Monday with two large bruises and pain over the entire right side of my body. It was still fun, though, even though our oldest daughter was grumpy and scowling in the above picture. (She's a bit dramatic!) Last night I felt well enough to go to Pound class at the gym. My joint pain has been more minimal, which is always a welcome relief. I don't know how long it will last but I'll take it....

My main reason for keeping this blog is to keep track of my treatment. It's a part of my journey that isn't necessarily fun, but it's vital. I want to have a good record so I can look back on it later. I'm going to start doing a treatment progress post once a month. Since I'm over a week into my third month of treatment, this post is a overdue. I have been in treatment for 10 weeks with the following: Ceftin, Rifampin, Tinidazole & A-Bab. Symptoms that have improved: GI issues are virtually gone. I was constantly having stomach issues over the last 3 years, but after starting antibiotic treatment they have gone away. The only time I have had problems is when my Bartonella symptoms flared when I was sick with a cold. This is a good thing because I was worried I wouldn't be able to tolerate abx due to my stomach problems. Thankful for probiotics! Recurring sore throat only happens occasionally now. Air hunger has been gone since I started Byron White...

I've been doing some soul searching. I've written before about how important positivity is, and being in the right mental state can make or break your treatment. It's so easy to focus on the negatives when daily, you are faced with the pain and symptoms that constantly remind you that your life is not the same as it once was. It's so present, with me all the time. But I am realizing that I cannot allow these diseases to define me. Having a chronic illness has taught me invaluable lessons. It has taught me to never take my health for granted. It has taught me to take care of my body and pay special attention to what goes in it. It has taught me greater appreciation for the important things in life. It has showed me who my true friends are. It has taught me to be my own advocate. I need more positivity in my life. On my good days, it's easy to be positive and upbeat. I start to believe I may be turning a corner, until my legs get pulled out from under me again....

If you've been told chronic Lyme doesn't exist... If you've been told Lyme isn't in your state... If you've been told your positive test was a "false positive"... You've been lied to. The anger has been building inside me for months. I've started writing this post several times, only to stop because I've become so worked up I couldn't write coherently. Once I get my frustrations under control, another story surfaces where a doctor has brushed off someone suffering from the serious symptoms of Lyme disease and it's co-infections. Or a news story airs, and I think, "I'm so glad they're bringing awareness" just to realize they are spewing more lies, lies the defy the truth thousands, likely even millions of people are experiencing - including myself. Before I even received my official diagnosis, I promised myself I would do whatever I could to help others avoid what I have been through. I've always believed...

I'm in the midst of an anxiety & depression fog. Emotional symptoms are quite common with Bartonella; everything from anxiety to rage and everything in between. Typically they come on suddenly with no warning. Yesterday afternoon was when it hit, and I have been struggling ever since. It doesn't matter if you know  they are a symptom or not, they are still real emotions and affect you in the same way. I've been dealing with a lot of anxiety with a touch of depression. I just want to sit and cry. It doesn't help that having all these health issues is cause for concern as it is, never mind when the Bart-induced anxiety kicks in. I feel overwhelmed and hopeless. I feel like I will never be healed. I feel like I am trapped and no one can help me. This is a completely 180 from how I felt only two days ago. I took my kids to the fair, and besides some joint pain, I felt pretty normal. It just goes to show how quickly things can change. What causes the most frustration f...

Do you ever feel like you are watching everyone else live life? I feel like that a lot lately. Social media seems to be a grand montage of everything I am missing out on. My friends seem to rarely invite me and the kids to do things with them, and sometimes I can't blame them - I do have to say no more than I'd like to. Why invite someone you know will likely not be able to even come? Part of me wants to stay home all the time, and part of me feels lonely and wishes I were invited out more. It's a strange phenomenon that I've been dealing with since I became sick. It's kind of like that symptom of depression - you don't enjoy the things you normally love to do. I think, for me, the things that I can do, and normally enjoy, just don't cut it. Because it's not enough for me. I want to be able to do all of it again. As much as I hate to admit it, my nature is of the "all or nothing" kind. Sometimes I just have to take a break from social media....

Today was fairly uneventful. We stayed home from a birthday party because the kids have the remains of that cold our family passed around. I don't want to be "that" mom that brings my sick kids to people's houses. I hate that. I had so much to catch up with around the house anyway, since I was sick and out of commission for most of the week. This is my third weekend on the cyst buster, Tinidazole (generic for Tindamax) The purpose of the cyst buster is to bust the cysts that the Lyme spirochetes form to hide from the antibiotics. Once Tinidazole busts them, the other antibiotics I am on can kill the bacteria. I just love the idea of those damn spirochetes being slaughtered inside my body.  Bartonella isn't giving in without a fight, I can tell you that. My eyes have been twitching almost non-stop all week. It's really beginning to drive me mad. My feet have been throbbing and I'm still dealing with brain fog and strange headaches. I woke up this mo...

I used to look forward to having coffee in the morning. So much so, that I once told my husband, "I'm so excited to go to bed, because it means that when I wake up, I get to have coffee." Yeah, when you're an adult, sometimes the smallest things make you giddy. Despite my love for it, coffee does not love me back. It's a sad truth that I have come to accept. The "treat" I now look forward to is my daily fruit smoothie. Okay, the one pictured was an extra treat because it had coconut whipped cream on top. Typically, I try to avoid adding sugar. I'm trying to cut it out entirely, because it's notoriously inflammatory, but once in a while I cave a little.  I have this nifty Ninja single-serve blender, which was a gift from a good friend. I LOVE the thing. You put all the ingredients into the cup, attach the blades, stick it on the machine, and when it's done, you unscrew the blades and replace it with a top. You drink right out of...

A different version of the Destiny's Child song. Ha.  I've been in treatment for almost 2 months now. Surprisingly, I've tolerated the antibiotics very well. I'd heard enough horror stories of antibiotics wrecking people's stomachs and making them feel terrible to make me doubt starting treatment. But that's the thing about Lyme - treatment isn't one-size-fits-all. There are so many variables.  I haven't had any severe herxheimer reactions, yet. (Knock on wood) I have had a lot more muscle twitching, especially around my eyes. I believe facial twitching comes courtesy of Bartonella. I've also had a few days of insane, walking dead type fatigue. I have four kids, and none of them slept through the night until they were over 12 months old. And I have never felt fatigue like this. Some people describe it as bone-crushing. I could barely even hold my head up. The burbur-pinella drops cut the fatigue in half, so I figure it was a minor herx. I ...

The worst part of Lyme is how much I've had to give up because of it. I have been determined to not allow Lyme to define me, however, it's hard to ignore it and live my life when it affects me every single day. I love to garden, but my vegetable garden has suffered this year because I physically cannot weed and stay on top of things. When I spend even a few minutes weeding, my hands become so painful and stiff. On really bad days, I can't even cook dinner because of how much they hurt. I was continuing to go to the gym 2-3 days a week, but I had to stop running (as I mentioned in a previous post) and I had to stop weight lifting as well, because I am not only not gaining muscle, but find my muscles are even more weak in the days following. I have missed a lot of my favorite fitness class ever, Pound, because of pain and fatigue. I've noticed lately when I go, I have strange, intense knee pain afterward, no matter how I modify the moves. Sometimes when I go, I am so...

The diagnosis is half the battle. The other half is treatment. The difficulty about treating for Lyme is there is not a one-size-fits all treatment plan. Some people do well on antibiotics, some only herbals, some a mixture of several kinds of medicine. Another potential problem in treating Lyme is the importance of targeting each form of the bacteria. They can form into cyst and can form biofilms in order to protect themselves from antibiotics. For this reason, doctors usually choose a multi-layer antibiotic regimen. The three forms of Lyme disease are: Cell-Wall Cystic Intracellular Honorable mention to biofilm, which needs to be targeted separately, but is not a true form a Lyme...more like a barrier. All four of these must be targeted in order to achieve remission. In the book "How Can I get Better?" by Dr. Horowitz, there is a helpful table on page 81 that shows the antibiotic & medication options for targeting each different form. My doctor has me on...

There are some moments you remember clearly, even though, at the time, they don't seem to be of any major importance. For me, one of those moments took place in the late fall of 2014. I was pregnant with our youngest child. I had suffered a miscarriage earlier that same year. It was a gut-wrenching, emotional experience. I was thrilled to be pregnant again, but also wrought with anxiety, and understandably so. One year before, I had begun hand-embroidering. I found it to be relaxing, and a good way to make a small amount of money on the side. Christmas was approaching, and I was busy stitching custom ornaments from my couch. Suddenly, I noticed an ache in the joints of my hands. I thought maybe I had overdone it with the stitching, so shortly after I called it a night. I shrugged it off, but as the days went on, the pain continued. The next time I met with my midwife, I mentioned the pain to her. I was becoming concerned, because I have never, ever had joint pain. She chalked i...

I never wanted this. No one does. No one asks to have a chronic illness. No one wants to battle an illness many medical professionals either do not believe in, or refuse to treat for more than 30 days. But it happens. And when it happens, you have two choices: lay down in defeat, or stand up and fight. I choose to fight. Christina