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