lymeoutlyndsey

My journey through Lyme Disease- Healing my body and mind.

People Pleasers Don’t Heal

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

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Why Is the Lyme Blood Test Inaccurate? Here’s (a few reasons) why:

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?

Good question.

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Learn to fail and set yourself free!

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!

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Infrared Sauna Worst-Night-of-My-Life Surprise!

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

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Miss-a-fun-a-phobia (MAFF) and How I Lost My iPhone

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.

Solstice ride

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.

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The Most Valuable Walk of My Life

I just had what might have been the most valuable walk of my life. A walk that all of you took with me. I walked from work with my little dog and over $20,000 in toe up the street to the bank. I was on my way to start a LymeOut bank account specifically for my treatment. Instead of being denied another loan because my debt to income ratio is too high and worrying about how I was possibly going to recover from this crappy illness, I am crying tears of relief and joy because I have somehow been lucky enough to have such incredible support from family and friends. I must have done something right in a previous life, because this really is the greatest gift that I have ever been given. Not only is it an opportunity to take full advantage of the best resources possible to give my best shot at healing from Late-Stage Lyme, but it is also an opportunity to be humbled like never before. Humbled by the goodness of others and realizing that all this time, all I had to do was ask for help. Being vulnerable has always been really difficult for me. I always thought I had to be strong and independent no matter what life throws at you. What I know now is that the truth is quite the opposite. If we want true strength, we have to look towards each other. In a culture where we are too uncomfortable to take off our headphones to say hi to people sitting next to us on a bus, it’s easy to forget the importance of community. So, thank you for helping me financially, but possibly more importantly, thank you for showing me that being vulnerable and reaching out to others for help is really where strength lies. I could never say thank you enough. Hugs to you all.

Much love,

Lyndsey

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LymeOut Lyndsey Fundraiser (AKA “I Have The Best Friends Ever”)

Last month my absolutely incredible friends held a fundraising event for me at The Green Frog, a local bar here in Bellingham. I really don’t have the words to describe how amazing it was. It was one of those nights that could never be replicated. The energy and sense of community was like nothing I have ever felt. We cried, laughed, hugged, and danced. It definitely made me realize how special my friends are and appreciate them even more than I already did. I am a seriously lucky girl. AND, we raised over $11,000! Carl Buchanan was kind enough to donate his time taking photos at the event. Take a look at some of the photos and I’ll finish blabbing after 🙂

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That’s me, DANCING! Yay! The band, Br’er Rabbit was totally awesome and I can’t thank them enough for donating their time and talent to play for us. If you get a chance to check them out live, you definitely should. It’s a foot-stompin good time. Not only was the band awesome, but thanks to tons of people and businesses that donated to the event, the raffle and silent auction were incredible! Folks won some really great prizes anywhere from bicycles to massages. Please take a look at the list of donors at the end of this post and support those businesses when you have a chance. It was really gracious of them to help out as much as they did.

To the friends who helped plan this event without me having to lift a single finger, you will never know how grateful I am. You are beautiful people and you make the world a better place. My life is drastically easier because of you. The energy and love that you put into this night was palpable. I love you!!!

It was so fun to see all of my friends in one place. Some even drove up from Seattle just for the night. I told you, my friends are the best. It was overwhelming to see such an outpouring of love and I was amazed that I didn’t fall over from exhaustion. I actually made it until nearly 11pm! When it was finally time to leave, and all of the hugs and goodbyes were finished, I hopped on my bike and pedaled home alone. It was a quiet and somewhat chilly evening. The whole ride home I couldn’t wipe the grin off of my face. I was in pure shock at how much love was in that place for those four hours. My connection to my community and to the good of humanity felt so strong that it energized me, even though I was drained. I crested up over a hill pedaling my single-speed 1968 cruiser, and as I began the descent on the other side, a warm wind blew across my face and calmed my soul. It was like it was whispering to me that everything was finally going to be okay. At that moment, I knew that I had the power to recover. No matter what that may look like in the end, I knew it was all going to be okay. Sometimes life is a real challenge and other times it is pure magic.

Much Love,

Lyndsey

Thank you so much to the following people and places for donating to the raffle-to-end-all-raffles!

Mark and Taylor Stephens

Semilla Seeds

Liam Gallagher Photography

Blue T Lodge

Jogo CrossFit Bellingham

4 Starrs

Chuckanut Builders

Val Thompson, Massage

Karen Gerstenberger glass art

Stephanie Torres knitting

Grounds for Change

Spencer Santenello cooking class

Monique Miller jewelry

Riverflame Rolfing

Brandywine Kitchen

Laurie Rosenberg Jewelry

Jennica Lowell Photography

Daphne Ryan Photography

Brown Dog Bike Repair

Western Freedom Seafood

Fitness Gear and Training

Brad Jones, Rolfing Bellingham

Angi Weston, bike coach

Jean Wylie ceramics

The Fork

Br’er Rabbit

Lacy Kemp-E. Hedberg art

Karla Stowards and FVMBA

Trek Dirt Series

Fairhaven Bike and Ski

Transition Bikes

Sojourn

Journey Jewelry

Kat Sweet of Sweetlines

Gravity

Cascade Designs

Lesley Stoner Art

3Oms Yoga

Terrain Fitness

Chair 9

Sexton Family

Honey Salon

Jessie Carlson Art

Diehl Ford

Zazen Salon

Co-Op

The Fountain

Superfeet

Fanatic Bike Co.

Modus

Shimano

Schwalbe

Scott USA

Toni and Guy

Earl’s Bike Shop

Whimsey

Elizabeth Station

Sweeney’s Meats

Freehub Magazine

Tess and Adam

NW Cup

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Goodbye Doxy Hello Flare

Rudolph

<<To donate and help me in my recovery mission, please click the donate tab in the menu to the right>>

Well, I have been on Doxycycline for the past 3 months and it has been a wonder drug for me! My symptom list became so small and manageable that I was able to get out for multiple bike rides and socialize. Mentally, I really was feeling like me again. The down side was that I had a perpetual burn on my nose and hands from Doxycycline. I made every effort to cover my face with scarves and hats and even avoided the sun entirely on nice days (hard to do in rainy Bellingham), and I still had the burn. It’s not a normal sunburn. It’s really splotchy and never peels. It also actually burns. My hands burn so bad at night when I’m trying to go to sleep that they feel like they may spontaneously combust. Apparently, although Doxy makes skin SUPER sun sensitive, it can also cause chemical burns. I think I had a mix of both. Finally, I decided that since I was feeling good otherwise, and I had been on it for a while, it was time to go off of Doxy and give my poor skin a break. Happy Day!

Just 24 hours after stopping Doxy, the symptoms began to creep in. Yesterday began a pretty strong flare. In my opinion, it seems nearly impossible to have such a reaction to stopping antibiotics within just 24 hours. So, I can’t really say for sure what is causing the flare, but it’s happening nonetheless. It’s hard to not feel discouraged since I have had such great success lately, but I know it’s only temporary. I have an appointment with my doctor on Monday and we will get things figured out. For now, it’s really hard to wake up. It’s always hard for me to wake up. I think most people have a hard time waking up, but I have had an exceptionally hard time the past few days. In the morning and after I wake up, I am not functional for at least an hour. I physically move VERY slowly. I feel like I am stuck in slow-motion and can’t do a thing to speed it up. I am so clumsy that I can barely hold my water glass. Mentally, I have a really difficult time focusing and forget what I am doing often. It takes twice as long as it normally would to take my 3 rounds of pills in the morning. After I give myself my B-12 shot, I feel a bit better and can actually make it out the door to go to work. Of course, I have to go back to my house shortly after leaving, because I have forgotten multiple things.

On top of being slow and distracted, I have loud ringing in my left ear, mild dizziness, mild nerve pain on the left side of my face, a vibrating feeling in my sinuses and behind my eyes, shin pain, foot pain, muscle pain, stiff joints, and light sensitive eyes. All of these symptoms come in waves. I will have 20 minutes or so of feeling awful followed by an hour or 2 of not feeling too bad. I am always way worse in the mornings.

I can handle the slow movement and the pain, but what I have the hardest time with accepting is the mental aspect of Lyme. When it starts creeping in like this, I can feel my “self” starting to disappear. It’s a horrible feeling. It’s like it takes over and kicks you out of your own body for a while. I sit in blank stares often (more than I would normally do), and have very little connection with the outside world. It feels like I get lost. I can muster up the energy to pull as much of my “self” out as I can in small spurts during the day if I want to be social, but the rest of the day is spent lost.

It’s important to be aware that people suffering from Late-Stage Lyme can have mild to severe cognitive effects. I will never forget what it was like to come out of the dark when I started to get better a couple of months ago. It was like the lights were turned back on. My “self” was present and I could connect with others again. It was such an amazing feeling. Right now, the lights aren’t fully turned off again, but they’re pretty dim. But, hey, at least I have SOME light and I know that this will get better.

I am, however, a little bummed that I am seemingly so dependent on antibiotics. I have been on treatment for a year and it’s slightly discouraging to have such a reaction to taking away antibiotics (if that’s the real reason for this flare). I really hope that eventually, I’ll be able to fight this stupid thing on my own. But, until then, I guess I’ll keep up the, as my favorite uncle says, “better living through chemistry”.

To counter this slightly gray post, I will post about my incredibly successful fundraiser sometime in the near future. It makes me feel better just thinking about it. On a financial note, it is more evident to me now, that my hope for being off of meds in one year may not be reality. So, please continue sharing my blog wherever you can so that I can reach my financial goal! Thank you so much for your help! If you have any funny jokes, now is a good time to share below….

Much love!

 

 

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LymeOUTLyndsey Event TONIGHT!!

My awesome friends got together and planned a benefit for me tonight to help me with my treatment costs! I couldn’t ask for a more awesome group of friends.  Here are the details for the event:

Special Notes: Cash-only event (ATM located inside of the venue if you forget), !!!!!!KID FRIENDLY UNTIL 9 PM!!!!

Date: April 24. 2013 TONIGHT!

Where: The Green Frog on State Street in Bellingham, WA;

When: Doors open at 7pm. Suggested entry donation of $20. The entry donation is just suggested, so if you want to come, but don’t have $20, come anyways! The more the merrier!

Raffle and Silent Auction: There will be an INCREDIBLE raffle and silent auction. Raffle tickets are $2.00 a piece. Raffle prizes include: bicycles (yes, plural), gift certificates to local restaurants, gift certificates to local clothing/jewlery stores, a GoPro camera, a YEAR unlimited membership to JoGo CrossFit Bellingham, mountain bike classes, cooking classes, fresh seafood, handmade hats, and TONS more prizes. It really is a raffle not to be missed!

You must be present to win raffle prizes. There will be TWO drawing times for the raffle: one at 8:30 pm and one at 9:30 pm.

The silent auction opens at 7pm and closes at 11pm. You do not have to be present to win silent auction items. They will be mailed to you.

Music: Br’er Rabbit (www.brerrabbitmusic.com) will be providing us with awesome fun music, so come get your dance on!

Drinks: The Green Frog is a cash-only bar, so please bring your green!

Spread the word and I can’t wait to see you there!!!!

Much love!

If you can’t attend the event tonight, but would like to donate, please click the donate tab on the menu to the right for a paypal link or email me (lilneeds@gmail.com) for snail mail. Thank you so much!

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What is a Jarisch-Herxheimer Reaction?

milk-bath-spa

Ever heard of a Jarisch-Herxheimer Reaction? Probably not. Many Late-Stage Lyme patients are very familiar with this term. The theory is an increase in symptoms or onset of new symptoms due to accumulation of toxins (inflammatory chemicals in the body) from the decay of Lyme bacteria during antibiotic use. Dr. Jemsek, a Lyme doctor on the east coast, has a more complete explanation here. After not having one for a while, this morning I had a lovely Herxheimer Reaction. For me, it usually goes like this: I take antibiotics in the morning. About 1 to 2 hours after taking antibiotics, I get an intense wave of symptoms including severe nausea, muscle weakness, slow movement, trembling head, pain and pressure in my spine, brain fog, and overwhelming feeling of needing to lay down and curl up into a ball. Pretty much just feels like a system shut-down. Typically, before or during times when I am having Herxheimer reactions, I get skin lesions along my spine that are really sore and generally leave scars. The theory behind the spine lesions is similar to syphilis, the body is trying to push out toxins through the largest organ it has- the skin. Why they are concentrated along my spine, I have no idea. I am going to take them to be a good thing and instead of being sad about scars, think of them as battle wounds that I received in a battle where I seriously kicked butt!

Thankfully, this type of experience generally doesn’t last long. Typically, I will begin feeling better within a couple of hours and will be right back to my normal self (which these days is feeling pretty darn good). This is, of course, never a fun experience. BUT, the reason that I want to share this with you, besides awareness, is to say that I have found some simple ways to deal with it until it passes. As soon as I start to feel the tell-tale signs, I start a warm epsom salt bath (with lots of epsom salt), drink tons of water with lemon, and do some dry skin brushing before taking my bath. Sometimes I add rose petals to the bath as well (pictured above) for added softness. Okay, I don’t really add rose petals. But, I do soak in the tub for at least 20 minutes while listening to some calm music. Doesn’t that sound nice? It does the trick almost every time! If you don’t ever need to use that protocol for Lyme, you could probably even use it to help get rid of gnarly hangovers. 😉 Not that you would ever need that…..

As always, thanks for the generous donations. Thanks for helping me fight this thing! Much love, Lyndsey

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