I guess I do have a full time job

I’m now a couple of weeks into my new Lyme treatment. I mentioned previously that the CDC protocol treatment did not work for me. That protocol is roughly three weeks of doxycycline. It can work for those who start taking it immediately after a tick bite. It has pretty much no chance of working for anyone who has had Lyme for longer. When, like me, you have no idea how long you’ve had Lyme for, it’s all trial and error.

I am now on a higher dose of doxy for a longer period of time. Antibiotics attempt to kill the Lyme. It is a tall order. The Lyme gets into different body systems and is really good at both preserving itself, and breaking down the defenses of its host (hey, that’s me!). So my body is weak, I am deficient in important nutrients, and now I’m taking pills with a License to Kill (Lyme). This means that supportive treatment is really important to combine with antibiotics. We need to kill the Lyme and build up the body at the same time. What does that look like? This:

A LOT of pills. With a couple of new additions this week (prompted by blood test results), I have crossed a milestone – 30 pills per day. 31, to be exact. Of course lots of these items can’t be taken at the same time as others, and need to be taken with food, or can’t be taken with certain food (dear cheese, I miss you) – hence the white board schedule. I also keep a notebook so that I can check off each item as I go and have a record if I missed anything. I also keep some keywords about symptoms I have to track progress/reactions.

Lyme is such a humdinger to kill that additional antibiotics are used to bust open its hiding places, making it more vulnerable to the License to Kill antibiotics. I’m on some of those too.

Along with the usual drug side effects, there are Herxheimer reactions to contend with. “Herxing,” as it’s known in the secret Lymie club, is when you feel worse during treatment – thanks to the die-off of the infection and released toxins. My wife always wants to call herxes horcruxes (20 points to Gryffindor), and I gotta say, I see the similarities – Doom! Gloom! Herxing can be rough, but it in a way, it hurts so good because it means SOMETHING IS HAPPENING. Die, bugs, die!

So it’s a lot going on in one body. I am but a wee 5’3”! Do I even have room for all these pills?? And sometimes my stomach’s inner monologue is, “WTF dghkgjlkdjgsdlfhkdhf?!?!” But with each notebook check mark, each giant pill gulped, I can feel like I’m taking steps in the right direction. Get better, get better, get better…

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Quick Lyme Facts

Less than 50% of people with Lyme recall being bit by a tick. I don’t ever recall a tick bite. How do so many people get infected without knowing it? Take a look at how teeny tiny ticks can be (check out that one bottom right!!):

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Less than 50% of people with Lyme get a “bullseye” rash. Lyme is known as the “great imitator” because it can present itself with a wide array of symptoms that are often misdiagnosed as something else. Here are some symptoms of Lyme:

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Additionally, the common test for Lyme, ELISA/Western Blot, produces a great number of false negatives! I consider myself so very fortunate to have tested positive and ended the mystery of “What is wrong with me?” very quickly.

Once you find out that you have Lyme, the trouble is treating it. The longer you’ve had it, the more challenging it is to treat. Most ticks that carry Lyme, carry other infections as well. These are infections most people have never heard of, with delightful and not-at-all scary sounding names such as babesia and bartonella. Many doctors still are not up to date on information about co-infections, and don’t even test for them! If co-infections are not identified and treated, patients can’t get better. Part of the reason those of us with Lyme all have different experiences with it, is the variety of co-infections that each of us may or may not have. Each co-infection has different symptoms and requires different treatment.

What’s new with me

LymeDisease has been sucking up the majority of my attention, and more of my energy than I like to think about, since September. Sometimes when asked “What’s new?”or “How are you?” I struggle to find words because my brain automatically says,“LYME LYME LYME, STUPID LYME.” On a bad Lyme day, it can be challenging for meto communicate at all. People are always telling me that I “look fine,” and that is because Lyme is often an invisible illness. Lyme is also not a one-size-fits-all disease. For many reasons, each person with Lyme can have a totally different experience with it.

Lyme attacks all the body’s systems. The longer you have it without knowing, the more damage it can do. In many ways, I am lucky when it comes to My Lyme. As soon as I got my diagnosis, my heart was checked; it is healthy. For that, I am grateful. I don’t suffer the joint pain and related issues that immobilize many with Lyme. For that, I’m grateful. While I haven’t been immobilized, I have been debilitated.

Last year, I started my own business as a postpartum doula. I was fortunate to work with three wonderful families and was on the road to certification with an international organization. I loved my job. Lyme has forced me to stop my doula work. The crushing fatigue and bewildering brain fog have left me barely capable of caring for myself and my own family – never mind another.

Luckily for me, I have another job, teaching a music class for small children, that I love, and am able to do on a part time basis. Really-super-duper luckily for me, I have a wife who brings home the bacon. Over and over again, I have thought – “Thank god it’s not her.” I can’t imagine the financial stress for our family if she were the one in my shoes.

But back to My Lyme. The most cut and dry symptom that I have had is a piercing headache above my right eye. No amount of ibuprofen can touch it. It is relentless. At its worst, it feels like a knife in my brain and makes it hard to keep my eye open and think clearly. At its best, it is a dull ache, that I’ve come to consider pretty normal. I have had this headache since September.

The fatigue is a weird thing. It is a deep, deep tiredness, kind of like something is sucking the life out of me. My body is always tired. My brain is always tired. If I rest for three days, I can almost feel like myself for one day before I crash again. It is boring as hell, and incredibly frustrating. I might have the energy to cook dinner, but that means laundry can’t happen. I might be able to do the grocery shopping, but then I won’t have the stamina to stand in the kitchen and prepare a meal.

As for the brain fog, it’s kind of like “Brit has left the building.” I forget everything. Having a conversation in a group is taxing. Hell, sometimes a conversation one on one is taxing. After I teach my music class, 3 times per week? 45 minutes of leading a class, singing, dancing, etc? I am TOAST for the rest of the day. Driving can be hard – on foggy brain days, I won’t get on the highway because I don’t feel I can mentally process everything that I need to in order to drive safely.

Anyway, I decided to create this space to talk a little about what I’m going through.

I received my diagnosis in October. The CDC protocol treatment for Lyme did not work for me. In January, I went to see a specialist to start my next phase of trying to get well. As of today, I am waist-deep in pills, still waiting on additional test results, and completely uncertain what the future holds with regard to my recovery.

One step at a time.