This is one of the best articles I have seen written about Lyme. Read it and share it!
It’s been 6 weeks since my treatment in Idaho with Dr. Tony Smith and I know many of you have been asking how I am doing, so I thought I would give you an update. Before I go on, there are two important things that you should know about my treatment with Dr. Smith and why it has not gone the way that things usually go.
First: I am still on intense antibiotic therapy. Before going to see Dr. Smith, I had been on antibiotic therapy for nearly a year and a half. During that time, I made huge gains in recovery and I was not willing to risk losing that by going off of antibiotics. Dr. Smith has told me that I am his first patient to refuse to go off of antibiotic therapy following his treatment. He doesn’t know what to expect or how that will effect the outcome of his treatment. Antibiotic therapy is not effective for some people, but it has been hugely effective for me, so I plan to remain on antibiotics until my symptoms are gone. For folks who can’t tolerate antibiotic therapy, Dr. Smith’s treatment is ideal and if you go see him, I would love to know how things go for you.
Second: I have a co-infection called Protomyxzoa Rheumatica (herein referred to as PR). PR is a newly discovered protozoal infection (similar to Malaria) that complicates my treatment. To read more about PR, go here. Dr. Smith has recently started studying how he can treat PR during the Lyme treatments and he attempted to treat me while I was there. However, I got an email from him a couple of weeks ago saying that the method he was using to treat PR was not correct, but that he has it figured out now and wants me to come back for free treatment as soon as possible. He doesn’t think my treatment outcome will be ideal until I can come back and have PR treated correctly. I really appreciate the personal email that I received from Dr. Smith, but what I appreciate more is that he is willing to openly admit that he was wrong and offer to try again for FREE. How many practitioners have you heard admit to being wrong and willing to try again? I really respect that about Dr. Smith. He believes in what he does and he truly wants to see folks get well. Thanks Dr. Smith! I am going to try to make it back to his office for a quick visit in December.
So, considering both of those things, I don’t think it’s fair for me to report on the success of his treatments without receiving full and proper treatment. I will report back about 6 weeks after my final appointment in December. Until then, my journey with antibiotic therapy continues!
Moving on now, let’s talk about feet! I have struggled quite a bit with my feet recently. Currently, my toes look like this:
Before I started antibiotic therapy, I had two toes on my left foot that would occasionally swell, burn, and get little red dots on them. I found no doctor that could explain this mystery other than diagnosing me with Raynaud’s. My feet go from being hot, red, and swollen to being freezing cold and turning purple. Sometimes they are hot AND purple. The little red dots become sore and eventually “bleed” into each other and become red blobs. My feet hurt to stand on in the morning, they swell with activity or heat, and sometimes I have sharp nerve stings in my toes. My doctor thinks that my feet issues are related to my co-infection, Bartonella. Lately, my feet have gotten much worse. Instead of the problem being two toes on my left foot, it’s now all toes on both feet. Considering this, I called my doctor. She is certain that it is Bartonella and put me on yet another gnarly antibiotic. This time, Bactrim. I am currently on Plaquenil, Minocycline, and Bactrim. Ugh. My boor body.
I have a couple of my own theories about my feet. My first theory has to do with the above-mentioned Protomyxzoa Rheumatica (PR). According to Dr. Fry, the doctor currrently performing the research on PR, the organism infects blood and behaves much like malaria. I have significant amounts of biofilm in my blood from this organism. I think it has decided that my feet are great places to live for some reason and it is damaging the blood vessels in my feet, leading to burst blood vessels in my toes (the little red dots) that then bleed into red blobs. That’s the first theory.
My second theory is one that may be hard to grasp for some, but it makes the most sense to me. My second theory is that the damaged vasculature in my feet is from damage to my sympathetic nervous system. Your sympathetic nervous system can cause random vasoconstriction and vasodilation that would explain the sudden and random temperature and color changes and burst blood vessels in my feet. It feels like a response of my nervous system to me. Also, something else interesting is that when I have a particularly intense session with my somatic psychotherapist, my foot or feet will swell, get hot, turn red, and burn. Sure, it could be that the emotional stress of those sessions aggravate infection in my feet. But, my point is, whatever is going on in my body, is sometimes (maybe always?) directly effected by my thoughts and emotions, subconscious or not. This is a difficult concept for some, but my experience with chronic illnesses has shown me that there for sure is a connection. It doesn’t mean that working through your “issues” will cure your body of infection without antibiotics, but we can no longer deny that there is a link, even if it is subtle at times.
Has anyone else had experience with feet that look or behave like mine?
Okay, well, it’s not actually a ring. It’s more like a rash all over my entire body. I have developed a lovely rash from head to toe. It is exactly the same as the rash I got immediately after my initial tick bite in 2004. It is also accompanied by the same symptoms as when I initially got bit: constant post-nasal drip; sinus pressure, fatigue, increase in joint-stiffness and pain, overall flu-like feeling. I feel like I am 22 again! Don’t I look it?
So, you may be like me and are asking, WTF?! What is the deal with this rash? I would love to talk to somebody who got infected with Lyme Disease in Northern Italy (where I was infected) and ask them about their symptoms and their treatment experiences. Since there are tons of strains of the Lyme bacteria, it may be that the handsome Italian version behaves a bit differently than what we have here in the US of A. So, if you know anyone in Italy who has gotten Lyme there (and went initially untreated), please send them to my blog or email. firstname.lastname@example.org
Anyways, I have a few theories about WHY this rash is happening:
1) I started a new treatment cycle on Monday that involves the addition of Oregano Oil to destroy biofilm and expose bacteria (more on that amazing herb later) and added the intense antibiotic, Clindamycin. Perhaps I am finally destroying enough biofilm that the little buggers are actually exposed to my immune system and antibiotics and this rash and accompanying symptoms are a herxheimer reaction, which would be a GOOD thing.
2) The rash and associated symptoms are caused by thriving infection (Lyme or various co-infections). That would be, obviously, a bad thing.
3) I am having an allergic reaction to Clindamycin. Also, bad thing.
4) The combination of the treatment I did with Dr. Smith as well as upping my antibiotics has finally really packed a huge punch to the bugs and it’s a herx. Good thing.
5) I have some sort of crazy other virus or infection unrelated to Lyme. Bad thing.
Basically, you can drive yourself crazy trying to figure out exactly what the heck is going on sometimes when you have Late-Stage Lyme Disease. I’m sure all of my fellow Lymies know what I mean. It is generally a futile effort. So, last night I decided to spend minimal time trying to actually figure this damn thing out and just laugh about it. (Well, and of course, I emailed and called my doctor).
My friend Nikki started texted me song lyrics with the word rash replacing the actual words. It was super corny, but I like corny jokes, so I laughed a lot. Laughter is an important part of recovery. My two favorites:
“Like a rash (Virgin). Scratched for the very first time!”
“I like red rash and I cannot lie, you other brothers can’t deny, when a girl walks in with an itty bitty waist and a red rash in yo face…”
I know, I am lucky to have such a good friend. Feel free to create your own rash jokes in the comments below. Hang in there, Lymies! Laugh about it when you can. Much love, Lyndsey
I am currently sitting in an apartment in beautiful Coeur d’Alene, Idaho eating fresh eggs that the neighbor brought to me with shredded brussel sprouts. I am here investigating a new Lyme treatment with potential. I have had the best couple of days that I have had in a long while. I am feeling more hopeful than ever that I will recover 100% from Late-Stage Lyme. It won’t be tomorrow or maybe not even in the next year or two, but it’s going to happen. I am well on my way. That has not always been an easy thing for me to say, because it’s scary. What if I say that I am going to recover and I don’t? Well, something I have learned recently is that it’s best to go directly towards things that scare you. Simply let go and believe. I needed to let go and believe to make this trip to Idaho.
A couple of months ago, a friend of mine recommended that I go see Dr. Tony Smith, a chiropracter in Coeur d’Alene that does energy and magnetic therapy for Lyme patients. His treatment is called Lymestop. The goal of the treatment is to guide your own immune system to find the stealthy bacteria and eliminate the bacteria naturally. It sounded like a bunch of BS to me. I have a masters degree in science (Geology) and have led my life believing only what I read in peer-reviewed journals. I certainly could not find any information on magnetic therapy or energy medicine for Lyme treatment published in what I would consider to be legitimate journals. So, I dismissed my friend’s suggestion to go see this man in Idaho and continued taking 85 pills a day and giving myself a shot in the leg.
Then, it occurred to me that the current treatment that I am on, long-term antibiotic therapy, has not been proven to work in any peer-reviewed journal either, and it most definitely IS working. Over the past year, I learned to listen to listen to my body in detail. I started to think about things that I had noticed through my experience with Lyme for which there was no scientific explanation. For example, when I am having a flare in the pain in my facial nerve, if I use my cell phone on that side of my head, the pain gets worse. This seems “crazy” and I have no explanation. Sometimes you have to listen to your body and know that what you experience is more true for you than what you may be able to read in a peer-reviewed journal.
This is when my thought process about different methods of healing shifted a bit. I still believe that the scientific method is the best way to keep the general public safe. But, sometimes there are things that are helpful to people that we cannot explain. We know this to be true, because we use the placebo effect as a valid method in all double-blind studies. This means we acknowledge that there are some folks who, when given placebo drugs, recover from ailments the same as those given actual drugs. I am not saying that the success this doctor in Idaho has had is based on the placebo effect, but I am saying that there are things that are operating in our bodies that we have not put into textbooks.
I started looking at renting a car to drive to Idaho. Then, I talked to two separate people randomly who said they had friends who had taken their children to see Dr. Smith in Idaho for intense food allergies and that their children were cured. It still seemed entirely too mystical to me to make the decision to go, but I was certainly more intrigued. I emailed with Dr. Smith a couple of times and each time I got the feeling that he knew what he was doing and really did see results with his work. So, I looked into the cost of Lymestop treatment. When I realized that the cost to be treated by Dr. Smith for six appointments over the course of three days was less than one month of my current treatment, it made sense to go.
I booked a studio apartment on airbnb.com, rented a car, and made the long drive to Coeur d’Alene. I had mixed emotions. I was excited to make a solo road trip and to visit beautiful Idaho, but I was skeptical as well. Before I left, I got an email from David and Shing, the people I rented the apartment from on airbnb.com. David said that he would save some dinner for me for my arrival since they live next door. Their hospitality set the tone for my entire trip.
I took off in the rental car on Monday. I smiled and laughed at how awesome it was to drive a car that could actually accelerate, had working AC, and had a working radio. I currently don’t own a car of my own since I sold my nice Subaru Outback a couple of years ago to pay for Lyme treatment and the one my partner graciously lets me drive is, um, we’ll say, tired. The drive was gorgeous and mostly uneventful aside from 90′s rap personal dance parties courtesy of XM radio. I arrived in Coeur d’Alene at about 7:30 pm and was greeted by a smiling David. He gave me a tour of the basement apartment and it was exactly what I needed. He had turned all of the lights on for me and had Hawaiian slack key slide guitar music playing on the radio. The music was timely since I recently lost my friend Kevin, who was my ukulele teacher. It was a beautiful reminder and made me feel at home. He had dinner for me in the fridge that his partner, Shing, had made. Gluten-free stir fry! It was perfect.
The next day, Shing brought me a kale smoothie that was one of the best I have ever had. She also brought fresh eggs from her friend’s chickens. If you decide to go to Idaho, look them up on airbnb.com. The apartment is on Elm street. You will not be disappointed.
The next day I began treatment with Dr. Smith. He uses a method of muscle testing to diagnose various infections. For you science types out there, you will not find evidence that muscle testing works in the literature. But, based on what happened next for me, I know there is legitimacy to what Dr. Smith does. The only information I gave him was that I tested positive for Lyme. I said nothing else about my other co-infections for which I tested positive for or where most of my nerve pain is. He proceeded to find ALL of my co-infections using his method as well as all of the areas where I have the most pain without me saying a single word. I cannot explain to you how he could have done this. So, that’s when I decided to fully let go. Let go and allow whatever healing was going to happen to happen regardless of explanation.
The treatment involves Dr. Smith identifying where the infection is seeded, and then guiding your own immune system there using magnetic therapy. Sounds crazy, and I suppose it is depending on your definition of crazy. But, the man has a FULL 3-inch binder of heart-felt testimonials written by patients in his waiting room. Testimonials that I could feel were real when I read them. Dr. Smith (and other patients that I talked to) said that if the treatment is effective, I will go through a period of feeling worse on and off for about 6 weeks and then should start to feel markedly better after about 3 months. The first two days, I felt great. Today, I am feeling pretty rough. Really tired, nauseous, sore muscles, nerve pain, etc.
I have no idea what to expect and I am going to let go of expectations and take each day as it comes. I will certainly keep you updated on my progress in case you feel that going to see Dr. Smith might be something you want to do in the future. If you have questions about the process, I encourage you to email him. He responds quickly and has helpful answers. I believe that there are some people who are healers and Dr. Smith is one of those people.
l’ll leave you with some photos I took yesterday while hiking around and spending time on the lake. It was a really wonderful experience. Let me know if you have questions or comments. Have you had success with alternative medicine that has not been proven? Did you struggle with skepticism?
As always, much love! ~Lyndsey
Whether you have Lyme Disease, Chronic Fatigue, Fibromyalgia, MS, Rheumatoid Arthritis, or a similar chronic illness; you have likely found that your symptoms worsen with emotional stress. This is absolutely true for me. It’s a fact that has probably been noticed by many chronic illness patients, but has not been given solid scientific explanation. A recent experience that I had with expressing tightly contained anger and the resulting symptom relief, lead me to the work of Dr. Gabor Mate. I will explain my experience with anger expression and the positive effects it had on my well-being after you watch the video interview with Dr. Gabor Mate below. It’s worth 10 minutes of your time. Take a few minutes away from your kitten and puppy videos to watch something that could possibly change your life and hopefully the landscape of medicine in the future. (Sidenote: I am also a kitten and puppy video addict, so I get it.)
As described by Dr. Gabor Mate in the video below, unexpressed anger and the inability to say no, depresses immunity. This is not a bizarre concept in “alternative medicine”. It is proven scientific fact. There have been well-organized published studies that have shown this to be true. Why have we not taken these studies more seriously in modern healthcare?
It is time that we pay more attention to the mind-body connection. The western ideal that the mind and body are two separate entities is false.
My debilitating Late-Stage Lyme Disease symptoms hit me with full force about a year after I went through a divorce. At the same time, I was stressing my body and mind by racing mountain bikes. After my diagnosis and finding a doctor who could successfully treat my Lyme Disease with drugs, I started to think about the fact that it likely wasn’t just antibiotics and supplements that I needed to completely heal. I needed to find a way to emotionally heal as well. At the time, I had no knowledge of the work of Dr. Gabor Mate and others. I just intuitively felt this to be true. That questioning lead me to my mental health counselor and my Rolfer, who both focus on mind-body work. I will introduce those two and how their work has helped me in more detail in a future blog post. I introduced them briefly here, because it is through working with them that I have learned the dramatic impact unexpressed emotion can have on health.
Which leads me to a little story that I want to share about an experience I had last week. It started around the middle of my workday on Friday. I began to get a migraine, which I know well, and those always lead to a lost evening in on the couch. In addition to the migraine, I was having muscle and joint pain. The muscles in my upper back were burning and aching. My knees started giving out as I was walking. I began to feel light-headed, dizzy, and fatigued. I had plans to meet up with friends that evening for dinner and a movie and really didn’t want to cancel.
By the time I made it home from work, my symptoms had progressed to the distracting point and I knew socializing with friends was likely not in my immediate future. I sat on the couch with my partner and the minute he said, “how are you feeling?”, the tears started to roll. It is beyond frustrating to have such a good healthy week be ended with pain and fatigue. I sobbed for a little bit and then from deep inside my gut, I felt intense anger. I suddenly felt like yelling, “NO! I am NOT going to let this stupid infection ruin my evening”. Instead of quietly sitting and accepting my fate, which would be my usual mode of operation, I decided to actually listen to that anger a bit. I felt moved to somehow strongly express that anger, instead of letting it sit in my body with nowhere to go. I needed to give it a voice. I needed for it to be heard. So, I turned to my partner and said, “I think I need to fight this today by yelling, NO!” He of course told me to go for it. My ego stepped in and said, “but he’ll think you’re weird yelling and screaming at nothing”. Then he said, “Go into the bedroom, shut the door, and scream into a pillow if you want.”
So, I did. I went into the bedroom. Laid on the bed. Closed my eyes and really sent my mind deeply into my body. What did it need? Then the intense crying began, followed by the overwhelming urge to scream. It wasn’t a high-pitch girly scream that I would do if surprised by something. In fact, it was a noise I have never made in my 31 years of life. It was a deep and aggressive yell that came from the pit of my abdomen. I questioned nothing and went with it. The scream was followed by hitting the bed with my arms in a quick downward stroke and simultaneously yelling “NO!” The final expression was more yelling and hitting and kicking quickly on the bed. It all came to a natural ending and I simply laid there and felt into my body. I felt like I was living more inside of my body instead of outside in the spaces between other people. I felt my nervous system calm and drop into a safe and serene place. I felt my breath go into a more satisfying rhythm. I laid for a few minutes and when I felt moved to get up, I did. I opened the bedroom door and grounded myself with a hug from my partner and a high-five from my dog.
I totally sounded like a psychopath, it’s true. But, what I am realizing now is that the most crazy thing is that we expect ourselves to contain and tightly control our emotions thanks to our egos. Our emotions are there for a reason. They function each as different cues for our nervous system. Following my anger expression event, my muscle pain and joint pain decreased to nearly nothing. My migraine transformed into just a small headache and I was able to function comfortably in a social environment for the rest of the night. No, it was not a sudden cure that left me feeling 100% better, but it was a dramatic decrease in symptoms. I felt lighter and more whole. It was not a trivial experience and I will be paying more attention to the intuition of my body in the future.
Have you had personal experience with an increase in symptoms during a time of emotional stress? Are you a people-pleaser that has experienced the increase in symptoms when you are unable to set boundaries and say no. Would you be able to let your guard down and express yourself loudly without feeling ashamed? Share your thoughts in the comments below. Don’t forget to follow my blog if you find it to be useful or interesting. Thanks!
As always, much love to you all! ~Lyndsey
Take some time to educate yourself on the pathology of Lyme Disease. Yes, this video is 30 minutes. Yes, it is somewhat technical. But, it may be important to you or a loved one in your future.
After watching this video, are you like me and are left with the question: Why is our government not doing more to expose the truth of Lyme Disease?
Today’s post is a little different from the past couple of posts and addresses something that I think many of us can relate to, Lyme-Disease or not. But, before I go further, I think I should update you on my health since my last post was following one of the worst nights of my life. I am feeling MUCH better now. Back to my “new normal”. My energy is back up, brain fog is gone, and muscle and joint pain is minimal. Yay! I did go through one more smaller Herxheimer reaction after starting treatment again after the sauna incident, but it’s because I unknowingly started both of my antibiotics at once instead of starting one and waiting five days before starting the other. Two lessons learned. Anyways, thanks for the thoughts and encouragement. It really does help. Having support from loving folks like you, is priceless. I GOT this!
On to the topic for today, and that is: Failure. Ick! It’s a scary word and in the past, has elicited a huge fear and shame response in my body and mind. It’s no secret that I grew up in a very competitive household being the child of a dedicated cyclist who raced seemingly every weekend and a mother who was a competitive weightlifter (until steroids came on the scene). My sister was a successful collegiate cross-country and track runner. It seemed reasonable as a child to assume that success in sports was required to live an acceptable life. Competition was just part of our family system. There are many healthy aspects to competition and obviously, being raised to appreciate the outdoors and activity has benefited me GREATLY as an adult. There are, though, also some shadow sides to competition and being part of a competitive environment that can creep in unknowingly. For me, it was fear of failure.
Something interesting about my history that I find curious is that every time I would find a sport where I excelled and had potential to be a competitive athlete, I would either get sick or injured and would be taken out of progressing in that endeavor. It’s hard to think that it was all just chance. When I was a kid, it was gymnastics. I was a very competitive gymnast that learned very fast and loved the sport immensely. As soon as I started competing, I believe that fear of failure kicked in and I would “train” everywhere I was, even outside of the gym. So, I ended up falling in a grass field because I stumbled on uneven ground while doing a backflip. I completely destroyed my elbow in the fall. Emergency surgery. It was a pretty terrible story, that I’ll save for another time. I still to this day cannot fully straighten or bend my right elbow. I tried my hardest to go back to gymnastics, but you can’t be competitive with an arm that doesn’t straighten. That ended my gymnastics “career”.
After my arm healed, I started riding mountain bikes with my dad. It was awesome to learn how to ride with him. By far, some of the best memories I have as a child. Soon after learning to ride, I of course, wanted to go race just like he did. I started racing and did pretty good for a little 13-year-old girl. As soon as I started becoming successful, my fear of failure response kicked in. During the first race that I got my butt completely kicked by another woman, I became so nervous about losing that I crashed and hurt my tailbone and was even further behind. I lost interest in mountain bike racing soon after, because even though I didn’t know it then, I couldn’t successfully lose.
In college, I learned how to rock climb and fell instantly in love with the sport. I learned really fast and progressed quickly. Seeing my success, I entered a bouldering competition and won my division. Soon after, my fear of failure kicked in. I trained relentlessly to get stronger and better and ended up with a partially torn rotator cuff that needed rest that I refused to give. I had surgery on that shoulder and following the surgery, was advised that I needed to “take it easy”. I could no longer climb as hard as I wanted to, so I moved on to the next thing.
The next thing was learning how to ride downhill mountain bikes. I moved to Washington and lived for riding my bike. I was progressing quickly and it felt so good to learn new things nearly every ride. The euphoria from high-fives and cheers from friends for doing a new jump or riding a sketchy line was priceless. Naturally, I decided to race. The first couple of races I did, I won by a significant margin. This was scary. I was happy that I was doing well, and I really did love the sport just for the riding, but I now felt like I HAD to do well. What if I didn’t? What if I failed? The cheers and high-fives would be replaced by people being disappointed in me and questioning my poor performance. It would be unbearable; or so I thought. My fear of failure response was FULLY engaged as I prepared to go to US Nationals to race downhill. I took my training up four notches beyond what I had ever done and started doing CrossFit in the mornings and riding in the evenings (on top of working 50 hours a week at a stressful high-paced job 3 hours away from my home). You guessed it, I got sick. This time it wasn’t a broken bone or injured shoulder. It was Lyme. Lyme that my own immune system had put into remission years earlier had come out and taken over. Thus, taking me out of competition once again.
Lyme will demand that you learn to slow down. I have learned to slow down, but it hasn’t been easy and I am certainly still learning. I started a Kettlebell lifting class to keep moving through my Lyme recovery. One of the things that I loved about kettlebell lifting was that I was NOT instantly good at it and I wasn’t even remotely the best. Interestingly, I have not had my fear of failure response with kettlebell lifting. I think it mostly has to do with the personal growth that I’ve done over the past two years and the incredibly awesome and supportive people in my class. It hasn’t been obvious to me exactly how much I have learned through my experience with Lyme until last night.
At my kettlebell lifting class last night, we did one of the hardest workouts that I have done in a very long time. The workout was a “1776″ workout to “celebrate” the 4th of July. It was a 1,000 meter row, 700 meter farmers walk with 16kg kettlebells, 70 russian twists, and 6 turkish get-ups. We all started the workout on the row and I instantly felt that ping in my stomach of, I need to hurry up, this is a race. My body immediately reminded me that I needed to go my own pace, no matter what that meant for my performance. The awesome thing about this is, I LISTENED. Woooooohoooooo!!!!! This hard head of mine has LEARNED! I backed off a little and found my own pace, which felt really good. As I finished the row, I started the farmers walk. The farmers walk was carrying a 16 kg kettlebell in each hand for 700 meters. I picked up the kettlebells and they felt really heavy. Normally, I would have immediately dropped down to a lighter weight, because if I didn’t, it would mean I would finish last. Finishing last has never been an option, because of my fear of failure. This day was different, though. I wasn’t scared. I knew it would take me a really long time to walk 700 meters with that much weight, but I wanted to do my best even though it meant I would be last. I felt so strong in who I am and knew that person is not defined by performance of any kind, that my fear of failure was completely gone. I understood in that moment, I mean really understood, that no matter how successful I was in any endeavor I chose in my life, I was loved and accepted regardless. That’s powerful stuff and I have Lyme to thank for that.
I had only walked 100 meters before I had to set down the bells to rest and that felt like success! Carrying those dang things 700 meters was the hardest thing I have done in so long. My awesome coach, Jenn Flick Lockwood, walked with me for the last 300 meters and it felt supportive and awesome. I am certain that in the past, something like that would have made me feel ashamed. When I finally finished the farmers walk, I came back to finish up the workout and everybody else was already done. That definitely would have triggered my shame response in the past, but not once did I feel that. I finished the workout and felt so proud of myself for finishing. I finished last and it didn’t even occur to me to be upset about it.
I went home and made a smoothie for my recovering muscles and was enjoying reading when Jason said, “How was the workout?”. I said, “Really hard. It was good, but it was definitely hard”. Then, I went on to brag about how awesome my coach is and how she walked with me for the second part of the farmers walk. I then found myself bragging about finishing last.
As somebody with my upbringing, I had been certain that finishing last, which is what I would have termed “failing”, would be this horrible yucky feeling that would make you want to crawl into a hole and not ever try again (AKA, shame), when in fact, it was the complete opposite for me yesterday. When I realized that I had learned to fail, it was the most uplifting and empowering feeling I have ever experienced. When I realized that finishing last in something does NOT mean that you are a disappointment to others, it evaporated my performance anxiety. Who cares if you try something and fail? The answer is, NOBODY! So do it! Get out there! Try something you’re not sure you can do with other people watching. Try it! Learn to fail, and set yourself free!
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.