Not Just Lyme

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Oof. Things have been pretty rocky since my last update. That flare-up of symptoms I was experiencing did not fade away after a few days as I have become accustomed to. Instead, it has gone on…and on… There have been brief moments of light – a couple of hours of energy after several spent resting, etc – but mostly, it has been horrible. Fatigue, ice pick headache, joint pain, neuropathy, brain fog, anxiety, drooping right side, and just to keep things interesting fevers, stiff neck, and a strange discomfort in my chest.

When Lyme makes my anxiety flare, it can feel like my heart is racing. When this happens, I take my own pulse, and typically it is normal. A couple of weeks ago, this racing heart feeling was happening quite often, and brought with it an odd sensation that I couldn’t quite identify. Was it chest pain? Was it tightness? Was the end of my PICC possibly resting against something it shouldn’t have been? Cue the chest X-ray, EKG, and every member of my health team listening very closely to my heart with a stethoscope. Fortunately, it turned out that everything with my heart and my PICC line were just fine.

Last week, I touched base with my doctor to let her know that I was still feeling very sick. I couldn’t get out of bed most days except for school drop-off/pick-up, and I had cancelled all my cognitive and physical therapy appointments because I was too sick to go. I told her about the fevers, stiff neck, and headaches. I told her I was hanging in, but just wanted her to know what was going on since I had never had a herxheimer reaction last so long. I was beginning to worry because my IV antibiotic treatment will conclude in mid-October. Feeling so much worse for so long with the end of treatment drawing near was making me feel a bit panicky. What on earth would we do next??

When my doctor got back to me, she said, “I think we got to the Babesia.”

Back in early 2015, I tested negative for co-infections, but we always knew that was not 100% dependable information, as the testing is not very accurate (I have read that only 2 strains out of an unknown number of existing strains of Babesia yield a positive test, for example). Based on my symptoms and experiences, we have assumed that I have both Babesia and Bartonella, two very common Lyme co-infections. Months ago, when I was on some combination of oral antibiotics, Bartonella symptoms had flared, meaning the drugs I was taking were getting to the infection.

Symptoms of Babesia include fever, headache, chest pain, and fatigue – all of which have been flaring for me. Now, if I wasn’t in the habit of tracking my symptoms on a daily basis, I may have only been able to tell my doctor I was feeling awful. But because I had my notes to refer to, I could pinpoint which symptoms were flaring, some of which I hadn’t experienced in many months, and pointed directly to Babesia.

Could it be that the IV rocephin has (I don’t even want to type it…….) nearly, kinda, somewhat…….maybe…….killed(???) the Lyme Disease, therefore bringing Babesia to the forefront? That could be what is going on. It all goes back to the analogy of Lyme treatment being like peeling the layers of an onion. We have peeled and peeled, and now we’ve hit Babesia.

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So, with less than two weeks remaining in my IV treatment, I am beginning to take mepron, a horrifyingly neon yellow liquid, which is slightly thinner than peanut butter and tastes like soap – and dear sweet goodness, I hope it makes me feel better.

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Trial, Success, and a New Tool

So much of living with Lyme Disease is trial and error. Lyme attacks all body systems, and each person’s case is unique. Many doctors have different theories of what helps, and many patients have different levels of success with each treatment, drug, or supplement. So when something definitively helps, it’s pretty exciting.

When my neuropathy / nerve pain and Bell’s Palsy became unbearable in Decemeber, my doctor told me to restart Inositol, a supplement that targets the nervous system, which I had previously been on for many months. She also added two other supplements – a form of B vitamin and a lipoic acid. I have experienced vast improvement since adding in these elements!

The effects were gradual, and I was still struggling with fatigue and pain over Xmas and our subsequent travel, but I had good moments and was able to enjoy the holiday with my family.

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 So fortunate to feel well for some outdoor holiday fun!

The neuropathy and Bell’s are not entirely gone, but they are quite minor in comparison to the level they were at a few weeks ago, mostly activating at the end of the day, or other when I am really tired. In fact, I am overall feeling significantly better than I was throughout December. I don’t feel great, but I’m doing okay, which is a very welcome change.

I’ll be headed back to my doctor soon, and we’ll strategize next steps to help keep me on a good path.

Mentally, I’m at a place of feeling determined to get my life in order. Being sick for so long, going through these cycles of being debilitated, and feeling okay, over and over, I often feel out of control. Having memory and energy problems in particular make it feel really hard to maintain a grip on my life. In the past, I have used a method called Bullet Journalling to keep track of my schedule and tasks, and I’ve decided to get back into it!

A Bullet Journal is basically a completely customizable planner to keep track of anything you desire. I’ll be planning out daily tasks and goals, yoga classes to attend, and keeping lists of things I need to remember. I’m also using my Bullet Journal to record my symptoms on a daily basis, to help track how I’m doing Lyme-wise.

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I already made some mistakes here, and I think I’ll tweak it some for next month, but it’s a start!

I’m tracking some habits as well, to try to get me into a routine of caring for myself and my home in a manageable way.

I’m hoping this tool will help me to feel more in control and provide a clear picture of how my illness is progressing.

As always, hoping for more good days ahead.