Dark and Twisty

As I sit here, my room spins around me. I had my first real Herx reaction on my new antibiotics the other day. I thought I had the flu, but WAY worse. I was super dehydrated, shaking, felt like I had a fever, and even blacked out. Quite exciting. I honestly wondered if I was dying. Turns out… drumroll…. I’m not. In fact feeling like I’m dying? That means the antibiotics are working.

This disease is so upside down and twisted in so many ways. I never would have thought that I would be sitting on my bed, wrapped in blankets on this 80 degree day, shaking, in extreme pain, exhausted, and celebrating. But here I am. I need something to be happy about amid all this awfulness, so I’m going to sit here and smile about the death of all the bacteria inside of me.

Advertisements

An adventuring spirit in a body that needs a nap

My Lyme story is starting to fall together, so much so that I no longer find myself in a panic, wondering if this is really what is wrong with me, or if I’ll be sick for the rest of my life. I had an appointment with a fantastic acupuncturist a few days ago, and she said that my whole story made sense to her and that I probably have had Lyme for quite awhile, but the symptoms were triggered when my immune system was overwhelmed with mono. It was such a relief to find a second medical professional who didn’t question me or try to belittle my symptoms. Acupuncture itself is also pretty cool! I’ve never had it done before, but she was just so intuitive. Overall she only stuck five needles in me, but I came out of the appointment feeling energized and content. She told me that she felt my body buzzing (she called it a “Lyme Buzz”) which is something that I have been trying to explain to doctors for months, but they didn’t understand what I meant when I said my whole body was vibrating so it was so nice to have someone put my symptoms into words.

It is a huge weight off of my shoulders to finally have a team of doctors behind me who treat Lyme and completely support me. I no longer feel like I have to prepare myself for a fight every doctors appointment. But at the same time, a diagnosis is only the beginning of my road to healing. I have been cooped up and resting for almost four months now, something my body needs, but the part of me that needs to adventure and be independent and active is going crazy. Before I got sick if I felt like this I would go for a run until I felt calm again, now if I were to try to run I have no idea how my heart and lungs would respond, not to mention the amount of time it would take me to recover.

So what do I do? How to I satisfy my spirit while also taking care of my body? I have been doing some yoga, which does calm my mind, but also leaves me craving motion. Taking walks helps sometimes, but often induces even more anxiety to be lightheaded and away from my bed (my heart and blood pressure are not getting along right now). Sometimes I find myself wanting to blast music and dance, but last time I did that I ended up with a nasty migraine. Does anyone out there have ideas for gentle workouts that might satisfy my need to move without leaving me dizzy and anxious?

IMG_1422

Oh, and a success! I went on a week long vacation with my family in Maine last week. I had to forgo the ropes course and zipline this time, along with most everything else which was a bummer, but I still got to see the glorious ocean! The beach is one of the most calming places for me, so getting to soak in the sun and listen to the waves outweighed all of the stress of traveling.

IMG_1417

Also, Lymie Serena problems: of course I went walking through tall grass in the Rachel Carson nature preserve to take pictures of a crane I saw just chilling at sunset. Sometimes I forget that adventuring is probably how I ended up here in the first place. But I can’t stop myself from being curious and exploring just because I’m afraid of what could happen! And I did diligently check for ticks afterward. No regrets!

Hope

I have Lyme Disease! I never ever thought that statement would be followed by an exclamation point, but after three months of being told that there is nothing wrong with me and consequently blaming myself, it is such a relief to have a diagnosis and know that no, it is not all in my head.

After an incredibly frustrating appointment with an infectious disease specialist who insisted that I couldn’t possibly have Lyme disease (I had a negative ELISA test a few weeks after getting sick). He basically told me that if I wasn’t better in 3 months I had chronic fatigue syndrome and my only hope would be to join a clinical trial at Stanford (that’s bullshit by the way, CFS is so under-researched and misunderstood that any doctor who claims his way is the “only” way is way too full of himself. Props to the Stanford research center for their work though!)

After he said that, I stopped fighting the brain fog and just tried not to cry. Then I did what I should have done months ago — I made an appointment with my naturopath. I don’t know why I only go to her in times of desperation, she really is an angel.

I spent two entire hours sitting in her office, talking to her about my symptoms, and it was amazing to finally have a doctor listen to me and validate how awful I have been feeling. She immediately drew my blood and sent it to the Igenex lab in California to test for Lyme, and also sent me home with a cortisol saliva test to check my adrenal glands. She also sent me home with piles of supplements of course, and told me to eat greens every day to cleanse my liver… going the naturopathic route is more than just taking a magic pill, it’s a lifestyle commitment.

A couple weeks later, I received a positive Lyme test from Igenex, as well as the results of my adrenal test. It turns out that my body basically stops producing cortisol in the middle of the day, and then goes back to normal by night time. This means that my adrenal glands are working way too hard, but luckily haven’t stopped completely so they have the ability to bounce back! It explains why I crash so hard in the middle of the day. I’m drinking a lot of licorice tea to supplement them… love the sayings on the Yogi tea bags, hate the taste!

As for Lyme, I was a little unsure of listening to a Western Blot that was positive by Igenex standards but negative by CDC standards, but the thing is, it makes sense. Vermont has one of the highest rates of Lyme Disease in the country, and 50% of the ticks here carry Lyme. I also have spent my entire life running around in the woods, often wearing shorts, with little regard for bugs. I definitely check for ticks after being in my grandparents woods because they have so many deer, but I also ran cross country for three years in high school and I’m pretty sure the idea of ticks never even crossed my mind. The other thing I didn’t know is how small they can be. I’ve looked at pictures so I knew what to watch out for, but they were unlikely actual size. My naturopath told me that at some points they can be as small as a poppy seed.

So there is a very good chance that I could have been bitten at any point in my life, and then my immune system suppressed the bacteria until it was overwhelmed with mono and stress and couldn’t anymore. Along with that, I also have about 90% of the symptoms. I just never found a tick or a rash. But apparently only 30% of people actually find a rash.

So yes, it does scare me a little to be going on antibiotics without the support of my primary care doctor, but at the same time she wasn’t very supportive anyway. She got very caught up in lecturing me about Lyme controversy and her views about it, and neglected to pay attention to my symptoms, lifestyle, and situation. Our healthcare system is definitely flawed, but that is another tangent altogether.

I started doxy yesterday, and am feeling fine. I’m hoping that as it kills off the bacteria and they release their toxins that I don’t get much worse, but if I do I have my naturopath’s cell phone number, which she said to use with ANY questions… tell me your HMO doctor is that supportive! She also is referring me to a LLMD to help treat the Lyme and also because she suspects I also have Babesia, another tick born infection (which can potentially be fatal — thank goodness I didn’t give up after four doctors!). She also has been working with Dr. Richard Horowitz himself, so I feel like I am in good hands, finally!

Of course, I still have a long fight ahead of me, and it’s likely that it will have to get worse in order to get better, but I finally have a reason to hope, and a knowledgable and supportive doctor behind me. And I have to thank God for letting me be so lucky; it’s possible that I have had Lyme for a long time, but thankfully we caught it just three months after the symptoms appeared and I got ridiculously sick. Some people go for years, bouncing between doctors with no answers. Take professional freeskier Angeli VanLaanen for instance… she had chronic Lyme for years, and it took her more than two years of aggressive treatments to recover and return to skiing, but she did it! She is definitely my new inspiration, and a source of hope!

Stuck

The problem with still not having a real diagnosis is that I don’t have a real treatment plan. My doctor has been randomly trying to treat some symptoms, but otherwise I’ve been on my own for two months. So I’ve been eating my vegetables, doing yoga, meditating, taking walks, sitting outside, and taking all sorts of supplements. I’ve tried massages, PT, and all sorts of other things, but I’m really just blindly reaching for something to work with no idea what direction to go in. This is very frustrating, but on the plus side, if I’m ever healthy again, I’m getting into a habit of living a healthy lifestyle. But that’s not helpful now, now I need someone else to lean on and give me direction. And sometimes we all do, and that’s okay!

Just Breathe

It’s my only focus right now. Remembering to breathe and be present in every moment that I can be.

I want to pass on the eloquent words of a family friend;

“No one has ever come up with a good answer to the question ‘Why me?’ and generally we all seem prone to take our good health for granted until we don’t have it anymore. Please believe that your good health will return, and when it does I suspect you will be among the enlightened who live the rest of their lives with a new appreciation for it.

Never give up hope. It is as necessary to your well-being as water.”

Stress and Running

It probably should have been a warning sign for me that second semester I was running every day, and that my morning run was the only time during the day that I felt remotely relaxed or connected to nature. I honestly normally kind of hate running, and I REALLY hate the cold, but somehow I found myself holding on desperately to bundling up for three mile runs in anything above 25 degree weather. Seriously, if it was warm enough to breathe without it hurting, I was running down the bike path or down to the waterfront. The highlight of the semester was the day I ran down to Lake Champlain only to find it completely frozen over. I wandered all over the lake, took pictures, and finally felt my mind clear.

IMG_2558

(It was beautiful, I swear.)

Anyway, what I’m getting at is that my life was out of balance, and if the only time I felt relaxed was when I was exercising, then my body must have been in stuck in stress response mode 24/7. My living environment was stressful, I wasn’t sleeping enough, I was trying hard to get out of some toxic relationships and friendships, I was burying emotions because the situation at home wasn’t so good either, I loved my classes but was pushing myself way too hard to do well in them, and I wasn’t taking the time to feed myself well.

Weirdly enough, I think I managed to avoid complete and total burnout first semester (or at least prolong it) by partying. Technically, second semester I should have been much healthier — I stopped eating meat, I was running and doing yoga, taking tons of supplements, and going to bed early. But my body was constantly tense and anxious, and I was so focused on achieving that I didn’t ever let myself completely stop and just have fun.

First semester was honestly a college freshman shit show, and I was living the least healthy lifestyle that I had ever lived, but I was so much happier and more relaxed. Almost every weekend, I would spend a night completely letting go of my worries, not thinking about school, getting drunk and going out to meet new people. The next day, I would sleep until noon and then eat a leisurely brunch with my friends, stuffing myself with dining hall food before facing my homework.

I’m not suggesting at all that I want to go back to that because it isn’t a lifestyle that makes me feel good about myself, but it is giving me some things to think about now, as I try to create a new and more balanced life. I need to make time to have fun and completely let go of all of the things that are stressing me out. I also need a connection to nature. I have been meditating outside a little more lately, which is really helping me to feel centered and connected to nature, but I think it’s time to brainstorm a way to get myself laughing and having fun when I can’t really do a whole lot. Maybe my family can give me some ideas!