lymeoutlyndsey

I don’t even really know where to start this post. Last night was without a doubt, the most painful, miserable, and scary night of my life. I literally did not know if I was going to make it through the night. The thing that put me over the edge was a trip to an infrared sauna. Yep. Seriously. It went something like this:

Over the past week and a half, since starting a new antibiotic, I haven’t been feeling that great. I haven’t really been able to exercise and my energy has been really low. I had some body pain and headache that was typical for me with a herxheimer reaction. It had been suggested by many people that going to an infrared sauna would help with detoxifying my body and eliminating some of the pain associated with herxheimer reactions. I thought it would be a good preventative measure for me to hopefully avoid feeling too crappy for the rest of the week. So, I went to an infrared sauna in town. I failed to tell the owner why I was there and so she assumed I was a normal healthy person looking to detox. Because, honestly, I think I have yet to fully admit to myself exactly how sick I am (until now). She set the sauna for 30 minutes and said, that’s the maximum amount of time that people should be in there. A little voice popped in my head that said, “hmmm….if that’s the maximum amount of time that healthy people should be in there, maybe I should go for less time to be safe”. But, then, of course, that voice was countered with, “Nah, it’s just a sauna, how bad could it be? It might make me feel a little tired, but it’s nothing I can’t handle”. Famous last words.

I stayed in the sauna for the full 30 minutes. I drank over a liter of water while I was in there. Within about 20 minutes of getting out of the sauna I got a migraine. Uh oh, I thought. Maybe I wasn’t able to handle it. But, I was still in disbelief. It’s a freaking sauna. Who can’t handle saunas?! As I drove back to work, the headache progressed to the kind that makes you dizzy and vision blurry. I knew I had to make it home fast. I swung by the office and grabbed the dog and headed home. I got some food for lunch on the way home and came home to attempt to eat. Within about 2 hours of getting out of the sauna, I was in the midst of the absolute worst herxheimer reaction I have ever had. After throwing up about 10 times, I called my doctor. She, of course, was not so happy that I had gone to the sauna for 30 minutes, since her recommendation is 10 minutes max for somebody like me. She told me to get in an epsom salt and baking soda bath and stay in it for as long as I could.

By this point, I was nearly paralyzed by pain. My head felt like it actually might split open and my muscles and joints were stinging and burning like nothing I could possibly describe accurately. My head and all muscles of my body were twitching uncontrollably all night. I had so much uncomfortable pressure around my spine and base of my head, that all I could do was cry , scream, and vomit. I couldn’t really communicate with Jason. Thankfully, he got my bath going and read over my doctors orders for management and helped by just being there. I continued to violently throw-up at least 30 times, probably more. I couldn’t keep any water down or any pills that would maybe help me. I layed in the bath tub and in the bed writhing around in pain all night. I had to ask Jason a couple of times, “I can do this, right?”, because I really wasn’t sure. I am so grateful for him. I can’t imagine going through this alone.

Finally, at around 4am, the vomiting stopped (with very focused meditation and breathing). At around 6am, the pressure in my head and spine started to go down. Just being able to stand without feeling like I was going to fall in the morning was so awesome. I still feel really bad now, but just the fact that my head doesn’t feel like I want to cut it off is so so so wonderful. I am still struggling a bit to keep down food, am short of breath, and still have some pain and twitching, but nothing compares to last night. Nothing.

I have been lucky in that I have a doctor who manages my treatment so precisely that I rarely get THAT sick. My doctor’s goal is to have me functioning at about a 3 or 4 out of 10 throughout treatment so I can stay at work. Last night was definitely a 10. I can’t imagine a more uncomfortable situation. I have heard horror stories and seen videos showing people herxing really bad during treatment, but I had never experienced that until yesterday. There is a reason why I have to be so meticulous about my schedule, my diet, and my pills. My doctor really knows what she’s doing. I am so thankful that I will hopefully, if I can manage myself better, never have to go through that again on such an intense level.

It was a horrible horrible event that scared the crap out of me and Jason. The scariest part, though, was that in the midst of my throwing up and muscle twitching I almost asked Jason three times to take me to the ER. I knew that if I could get some IV fluids, it might help slow things down. The sad part about that, though, is the reason I didn’t go is because I knew that if I went, nobody would have a clue how to help a Lyme patient and in fact, they would probably question my diagnosis (even though I am a seropositive person). I didn’t feel like being ridiculed or questioned because of my Late-Stage Lyme diagnosis. Honestly, there is a part of me that has still questioned it all throughout this process. Until last night. Last night I really learned how much of this stupid infection is actually in my body. I was shocked at what happened to me and still am. It infuriates me to think that there are doctors out there, like mine, who are successfully treating really really sick people and are being ridiculed by the medical establishment for it.

Last night and today have made me grateful that I have been able to manage this illness as well as I have. There are so many people out there who feel the way I did last night on a regular basis. I can’t imagine. It makes me really take this way more seriously and appreciate feeling just mediocre. I would have given anything last night to just feel mediocre. Something has got to change with Lyme research. I should not feel like I can’t go to the emergency room for help. It’s time for the medical community to wake up and spend more resources learning about Lyme. It’s only going to become more important for us in the future.

Today, I am eating a little bit of food and slowly drinking water. My doctor has taken me off of all treatment for five days until this passes. I have never been so scared to start treatment. I want more than anything in this world to not go through that again. To think, it all started with what was supposed to be a relaxing sauna. Watch out Lyme patients, go easy with the sauna! Apparently, if used for a small period of time (10 minutes), the sauna can be helpful in detoxing, but if used longer earlier in treatment (30 minutes) it will cause MASSIVE die-off, since the bacteria cannot thrive in heat. The massive die-off will completely shut-down your body’s ability to detox. That is what happened to me. Lesson learned.

Thankfully, I am strong and I think I will recover from this and be able to at least go to work tomorrow. Some people are not so lucky. Feel free to send me some healing vibes over the next few days.

Much love,

Lyndsey

Look at these smiling people on their bikes for the summer solstice at the top of a beautiful mountain with an incredible view of the ocean spotted with green islands on one side and a majestic volcano on the other.

Don’t you want to be there?! Doesn’t it eat at you a little to NOT be there? THAT feeling, my friends, is called miss-a-fun-a-phobia (MAFF). Technically, the term was coined by my friend Nikki, but we all know what it means. It’s that moment when you see your friends post some awesome photos of somewhere amazing that they went doing something that looks like so much fun that you die a little inside because you aren’t there doing it. Oh, Facebook. This experience and knowledge is a large part of what motivated me to ride to the top of Galbraith Mountain yesterday, despite the fact that my body was SCREAMING at me to rest.

Every year, the mountain bike community in Bellingham does a summer solstice ride. People ride to the top of the mountain to a great spot in the sun and barbecue and drink adult beverages until the sun sets over the water below. This year was going to be even cooler, because after the sun set, there would be a super moon rising to light the way down the trails. Needless to say, I was pretty determined to be part of this experience. I was going to head up the hill as soon as I got off of work.

As my work day progressed, I started feeling worse and worse. This week has been pretty rough, because I started a new cyst-busting drug called Tinizadole. It has made me herx and just overall feel crappy. My liver and kidneys aren’t doing awesome right now (per my bloodwork last week) and it’s a time where I need to slow back down and listen more deeply to my body again. Which, is hard to do when I’ve been doing so well and charging forward and letting my “go-get-em” side of my personality take over once again. Since that is the part of me that had taken the reigns as of late, when I started to feel sick and my body started suggesting that maybe a bike ride tonight was a bad idea, my brain said “Oh, hell no. We are doing this ride, like it or not. I am dragging you to the top of the mountain and we WILL watch the beautiful sun set over the water and we WILL laugh and have fun with all of the awesome people who will surely be there. Afterwards, we will ride down the trails with the incredible moon overhead. No is not an option.”

I pushed onward and when I got off of work and got in my car to drive home, the dizziness began. To the point where driving seemed like a slightly questionable task. Not really bad, but maybe equivalent to driving home after happy hour. At this moment my body and brain have another conversation that goes something like this:

Body: “Maybe we should just rest on the couch for the evening”.

Brain: “Your freaking crazy. I’m not going to spend an incredible summer solstice on the COUCH. That is the lamest thing I could possibly do and would be a complete waste of a meaningful day.”

Body: “But we are so tired and dizzy already. Imagine how tired and dizzy we’ll be if we go ride. It’s really not a good idea. I mean, we almost rear-ended that person because you are so spacey.”

Brain: “RAWR! Would you shut up?! I’m not interested in your opinions right now. We are GOING on this ride. End of story.”

At this point, I think my body probably mumbled under its breath something like, “Okay, but you’ll be sorry A$$hole…”.

I charged onward and changed clothes to go ride, had a snack and took my second round of antibiotics, and went to load my bike into the truck. I bent down to load my bike and it’s like my muscles refused to work. Picking up my bike to put it in the truck was harder than it has been in a long time. A red flag appeared in my brain and another conversation took place:

Body: “You really need to listen to me. I am not feeling a bike ride today. If you’re going to be so stubborn, how about we just go to the beach or something?”

Brain: “Sigh. Yeah. Lifting my bike was really hard, and this dizziness is only getting worse. I’m having a hard time powering through it. Maybe we should just go to the beach. Or even just sit on the couch. This is too hard. But, think about all of those awesome photos that everyone is SURE to post on Facebook about how incredible the summer solstice ride was and think about how much you will wish you would’ve been there instead of laying there on the couch or your stupid yoga mat. No! We are not going to waste this evening on the couch. We are GOING!”

Body: *under its breath* “I need to find somebody that respects my opinions more. This is bullsh*t. After everything I do for you, this is the treatment I get…”

Brain: “What did you say?”

Body: “Nothing. I’m done here.”

~End of awkward and intense conversation~

So, I forced myself up the mountain and made it to the top. By the time I got to the top, my dizziness and fatigue was pretty intense, but my stubborn attitude had taken over and I was powering forward with a freaking smile on my face DAMMIT! It was the summer freaking solstice!

I saw the view and I saw the friends and suddenly I realized, as awesome as it was to be up there and as much as I would feel included when I saw the Facebook photos, it was so not worth it. The joint pain and muscle pain had started by then and I was feeling my body start to collapse. I’ve been in this territory before, and I knew that I had to get home as soon as possible to avoid a complete shut-down. I headed down the mountain before the sunset with my friend Asta, but my brain fog had taken over so much by this point, that the stupid argument it was having with my body earlier no longer mattered. I rode trails halfway down the mountain until my dizziness was so bad that riding trails was nowhere near safe. We coasted down the road the rest of the way and I did my best to stay as alert as possible. I made it to the truck and driving home was a struggle and possibly not a good idea, but I made it home. I really don’t remember the rest of the night very well. I know I made it to the shower and to bed, but it was nothing short of miserable. By the time I went to bed, the vibrating feeling had progressed to shaking and my body was so sensitive that I couldn’t handle Jason rubbing my back. In the midst of it all, I lost my cell phone, which is not surprising considering I lost my memory.

I’m bummed that I did this to myself, but I will give myself a little slack, since this journey is a process and no good process goes without some trial-and-error.

What I do know now more than ever is this: If you are ever confronted with MAFF, kick it to the freaking curb. Because no matter how amazing some not-to-be-missed event sounds or looks on Facebook, if it doesn’t align with your mind AND body, it will not be worth it. I promise you. It won’t.