In 2015 I received the most joyous news... I had Lyme Dis-ease. Why was there joy? That diagnosis opened the doorway for years of unanswered questions I had about my health. I shared my woes and such on social media such as I do with my abuse survival story.
I was excited to have LymeLight Stories reach out to me to do an interview about my story! After my story ran I connected with the courageous leader, Taylor Schwabe. Seeing her as a Hero for spreading awareness as well as her own personal battle led me to find out what 'Her' story is.
She is kindly opening up to share an intimate peek into her life with overcoming Lyme. I hope you glean wisdom and know you are not alone in 'your' journey.
Hi Taylor! So, tell me about when you noticed something was not quite right with your health.
"The most severe symptoms began in 2014 while I was in college (although looking back now, I was bitten by several ticks at a young age and had minor symptoms throughout the years). After finishing class one day, I started experiencing a sharp, stabbing sensation in my chest. It was very painful, like a knife, whenever I took an inhale - and no matter how I positioned myself, it didn’t subside. At urgent care, they could not find anything wrong based on a chest x-ray and EKG.
More symptoms continued to pile on in the following weeks: I started to get neuropathy in different parts of my body (like tingling & pins-and-needles). My hearing started to decrease and the GI issues, fatigue, and joint pain worsened...the sharp chest pain persisted with every inhale - Along with this, I developed the sensation of being unable to catch a full breath (called “air hunger”). Every day since then, I have been struggling with these symptoms and working hard to heal. "
At what point did you decide, "Ok, I'm really sick and just not getting any better by the advice of my
doctor and need to try something different."
Taylor recalls, "After things took a turn for the worse, I saw many different health providers (MDs, naturopaths, alternative health practitioners) over the course of a year... No one was able to give me a concrete diagnosis nor did I experience any relief from their therapies. Like many in the chronic illness community, I was told that my symptoms were due to being "over-stressed" and that they were "in my head."
After nearly a year with no explanation and no end in sight for these terrible symptoms, I was feeling pretty hopeless. This was when two friends (separately) suggested that I look into chronic Lyme Disease. After researching the symptoms of chronic Lyme and discovering that false negatives are common with conventional testing, I decided to see a Lyme specialist, which was when I was diagnosed with chronic Lyme, Babesiosis, and Bartonella."
Taylor, I know there are so many remedies and wacky treatments out in the world. What is the weirdest you tried and did it work?
She says, "Some of the treatments I’ve tried are pretty "out there". Over the past few years I’ve experimented with a wide variety of therapies - everything from antibiotics to shamans, from placing giant magnets over my organs to being zapped with lasers and electromagnetic machines, from western modalities to eastern modalities, and everything in between... One of the weirder treatments I received was when a practitioner rebalanced my Yin & Yang energies by waving an antenna (with green/red lasers) over several of my chakra points...I can't say I noticed a benefit from that one!"
When asked if she could change "1" thing in the medical community in regard to the challenges of being a patient she answered, "I left many appointments feeling vulnerable, alone, and unheard. There have been many times where I felt that my visits were rushed - I didn't have time to ask questions because there was pressure for the provider to hurry into the next room for a different patient. I wish that all providers genuinely wanted to do medicine in order to help people heal - and that healing would be more of a lifestyle for those who choose health professions, instead of merely a way to make a living. I feel fortunate to have found a few providers who truly live to heal others as best they can - when you’re with them, you feel hopeful and you know you are heard...wish there were more like this!"
Taylor is super excited that she is beginning to see with a Lyme-savvy neurologist and this has made her hopeful about future treatments... She happily adds that she is also moving soon - back to a place that she loves!
I asked if there was a ritual, object or tool can she not live without or that she must use everyday even it isn't health related.
She responded, "Meditation (at one of my outdoor "hideout" spots) has been an important ritual for recovery. Also, going for a drive with some of my favorite albums turned up really loud has been a good release. 😄"
How has the dynamic at home and or work changed since you have had your health challenges?
"I’ve had to decline several professional opportunities due to my health... which has been frustrating, especially considering my age (23). This is a time when I want to be focusing my energy on building a career and having fun, not trying to recover from disease. During the past few years, there have been periods that I was able to work full-time, periods when I could only handle part-time work, and periods when I could not work at all because the symptoms became too debilitating.
I am lucky that my immediate family has been supportive, as well as many close friends. Even with an amazing support system, it can still be very isolating - No one else knows exactly how much pain you might be experiencing at any given time, and you don't always want to explain how it feels to others, especially because it might make them feel bad. We can't expect family and friends to understand what it feels like to live with these symptoms day in and day out but, it makes a huge difference to surround yourself with people who appreciate the seriousness of this condition and who want to walk through this challenge with you."
Taylor, could you tell me how the idea for LymeLight Stories come about?
She replied, "LymeLight Stories" has been a fun, small side-project that came about because I was starting to connect with so many other Lyme patients. I was amazed by the similarities of our stories, particularly with the challenging and long diagnostic process. I thought that having a platform where I could share other Lyme patients' experiences would build awareness of the fact that late-stage Lyme can mimic many other conditions and that receiving a diagnosis can be extremely difficult."
When asked about a favorite quote or motto she has, she says her favorite quote is: "Everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.” ~ Viktor Frankl
I asked her what hobbies she enjoys, she says, "Anything outdoors...especially hiking & skiing when I can. Music, too - piano, guitar, mostly."
Taylor, looking back on your health journey what advice would you give to someone just beginning to look for answers on their path?
"Recovering from chronic illness is complex, multi-layered, and very unique to each person. What works for one person may not work for the next. Antibiotics may help some people with chronic Lyme, and they may not be the right path for others. People are quick to give you their opinion on the best treatment to do. There is not a lot of gentleness when people talk about “miracle cures” and what worked to get them to “remission.” It’s great to talk with other patients and learn about all of the different treatments, but bear in mind that the same thing that worked for “Bobby Sue” may not work the same for you!
Just as people love to tell you what to do, people are also quick to tell you what NOT to do. There will be advocates and naysayers for any direction you choose. I’ve had people tell me that antibiotics are a bad idea and others tell me that alternative therapies wouldn’t work - ultimately, it may be a lot of trial-and-error until you find what works best for you. One cool thing about all of this is that you will likely build a communication with your body. You'll be able to better tune into what causes you to feel different, for better or worse, whether it’s a medication, supplement, or food. This awareness can be a useful guide to help navigate treatment.
It would be great if there were one silver bullet for everyone - but everyone has a different set of puzzle pieces to work with. Besides the tick/vector-borne infections, you may also have to address other factors - like heavy metal/environmental toxicity, mold toxins, parasites, yeast, viruses, other pathogens, immune/hormonal imbalances, among other things...
I wish I had taken detox methods more seriously at the beginning of my journey - I didn't appreciate how important it is to get the toxins out to best support your body as it fights off all of the infections. There is a lot of good information online about different ways to detox for chronic illness. Also, talking to others with chronic illness and chronic Lyme (whether that's in a support group, online, at your doctor's office, or any other way) can be very rewarding - sometimes the best therapy is connecting with people who really "get it."
As difficult as it is to be fighting for your health and getting through the days with debilitating symptoms, illness brings a lot of lessons and ways to grow. Lessons of awareness, of finding balance and self-compassion, of disengaging from the ego, and of letting go. Healing is an opportunity to get to know yourself better, too.
Something that helps me get through the hardest days is reminding myself that there is meaning in the suffering - Pain can be turned into purpose, as we can use this experience to relate to and help others going through their own challenges."
For more information or to just give a little virtual hug to Taylor reach her at-schwabe24@gmail.com. LymeLight Stories for inspirational stories.
I was excited to have LymeLight Stories reach out to me to do an interview about my story! After my story ran I connected with the courageous leader, Taylor Schwabe. Seeing her as a Hero for spreading awareness as well as her own personal battle led me to find out what 'Her' story is.
She is kindly opening up to share an intimate peek into her life with overcoming Lyme. I hope you glean wisdom and know you are not alone in 'your' journey.
Hi Taylor! So, tell me about when you noticed something was not quite right with your health.
"The most severe symptoms began in 2014 while I was in college (although looking back now, I was bitten by several ticks at a young age and had minor symptoms throughout the years). After finishing class one day, I started experiencing a sharp, stabbing sensation in my chest. It was very painful, like a knife, whenever I took an inhale - and no matter how I positioned myself, it didn’t subside. At urgent care, they could not find anything wrong based on a chest x-ray and EKG.
More symptoms continued to pile on in the following weeks: I started to get neuropathy in different parts of my body (like tingling & pins-and-needles). My hearing started to decrease and the GI issues, fatigue, and joint pain worsened...the sharp chest pain persisted with every inhale - Along with this, I developed the sensation of being unable to catch a full breath (called “air hunger”). Every day since then, I have been struggling with these symptoms and working hard to heal. "
At what point did you decide, "Ok, I'm really sick and just not getting any better by the advice of my
Taylor recalls, "After things took a turn for the worse, I saw many different health providers (MDs, naturopaths, alternative health practitioners) over the course of a year... No one was able to give me a concrete diagnosis nor did I experience any relief from their therapies. Like many in the chronic illness community, I was told that my symptoms were due to being "over-stressed" and that they were "in my head."
After nearly a year with no explanation and no end in sight for these terrible symptoms, I was feeling pretty hopeless. This was when two friends (separately) suggested that I look into chronic Lyme Disease. After researching the symptoms of chronic Lyme and discovering that false negatives are common with conventional testing, I decided to see a Lyme specialist, which was when I was diagnosed with chronic Lyme, Babesiosis, and Bartonella."
Taylor, I know there are so many remedies and wacky treatments out in the world. What is the weirdest you tried and did it work?
She says, "Some of the treatments I’ve tried are pretty "out there". Over the past few years I’ve experimented with a wide variety of therapies - everything from antibiotics to shamans, from placing giant magnets over my organs to being zapped with lasers and electromagnetic machines, from western modalities to eastern modalities, and everything in between... One of the weirder treatments I received was when a practitioner rebalanced my Yin & Yang energies by waving an antenna (with green/red lasers) over several of my chakra points...I can't say I noticed a benefit from that one!"
When asked if she could change "1" thing in the medical community in regard to the challenges of being a patient she answered, "I left many appointments feeling vulnerable, alone, and unheard. There have been many times where I felt that my visits were rushed - I didn't have time to ask questions because there was pressure for the provider to hurry into the next room for a different patient. I wish that all providers genuinely wanted to do medicine in order to help people heal - and that healing would be more of a lifestyle for those who choose health professions, instead of merely a way to make a living. I feel fortunate to have found a few providers who truly live to heal others as best they can - when you’re with them, you feel hopeful and you know you are heard...wish there were more like this!"
Taylor is super excited that she is beginning to see with a Lyme-savvy neurologist and this has made her hopeful about future treatments... She happily adds that she is also moving soon - back to a place that she loves!
I asked if there was a ritual, object or tool can she not live without or that she must use everyday even it isn't health related.
How has the dynamic at home and or work changed since you have had your health challenges?
"I’ve had to decline several professional opportunities due to my health... which has been frustrating, especially considering my age (23). This is a time when I want to be focusing my energy on building a career and having fun, not trying to recover from disease. During the past few years, there have been periods that I was able to work full-time, periods when I could only handle part-time work, and periods when I could not work at all because the symptoms became too debilitating.
I am lucky that my immediate family has been supportive, as well as many close friends. Even with an amazing support system, it can still be very isolating - No one else knows exactly how much pain you might be experiencing at any given time, and you don't always want to explain how it feels to others, especially because it might make them feel bad. We can't expect family and friends to understand what it feels like to live with these symptoms day in and day out but, it makes a huge difference to surround yourself with people who appreciate the seriousness of this condition and who want to walk through this challenge with you."
Taylor, could you tell me how the idea for LymeLight Stories come about?
She replied, "LymeLight Stories" has been a fun, small side-project that came about because I was starting to connect with so many other Lyme patients. I was amazed by the similarities of our stories, particularly with the challenging and long diagnostic process. I thought that having a platform where I could share other Lyme patients' experiences would build awareness of the fact that late-stage Lyme can mimic many other conditions and that receiving a diagnosis can be extremely difficult."
When asked about a favorite quote or motto she has, she says her favorite quote is: "Everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.” ~ Viktor Frankl
I asked her what hobbies she enjoys, she says, "Anything outdoors...especially hiking & skiing when I can. Music, too - piano, guitar, mostly."
Taylor, looking back on your health journey what advice would you give to someone just beginning to look for answers on their path?
"Recovering from chronic illness is complex, multi-layered, and very unique to each person. What works for one person may not work for the next. Antibiotics may help some people with chronic Lyme, and they may not be the right path for others. People are quick to give you their opinion on the best treatment to do. There is not a lot of gentleness when people talk about “miracle cures” and what worked to get them to “remission.” It’s great to talk with other patients and learn about all of the different treatments, but bear in mind that the same thing that worked for “Bobby Sue” may not work the same for you!
Just as people love to tell you what to do, people are also quick to tell you what NOT to do. There will be advocates and naysayers for any direction you choose. I’ve had people tell me that antibiotics are a bad idea and others tell me that alternative therapies wouldn’t work - ultimately, it may be a lot of trial-and-error until you find what works best for you. One cool thing about all of this is that you will likely build a communication with your body. You'll be able to better tune into what causes you to feel different, for better or worse, whether it’s a medication, supplement, or food. This awareness can be a useful guide to help navigate treatment.
It would be great if there were one silver bullet for everyone - but everyone has a different set of puzzle pieces to work with. Besides the tick/vector-borne infections, you may also have to address other factors - like heavy metal/environmental toxicity, mold toxins, parasites, yeast, viruses, other pathogens, immune/hormonal imbalances, among other things...
I wish I had taken detox methods more seriously at the beginning of my journey - I didn't appreciate how important it is to get the toxins out to best support your body as it fights off all of the infections. There is a lot of good information online about different ways to detox for chronic illness. Also, talking to others with chronic illness and chronic Lyme (whether that's in a support group, online, at your doctor's office, or any other way) can be very rewarding - sometimes the best therapy is connecting with people who really "get it."
As difficult as it is to be fighting for your health and getting through the days with debilitating symptoms, illness brings a lot of lessons and ways to grow. Lessons of awareness, of finding balance and self-compassion, of disengaging from the ego, and of letting go. Healing is an opportunity to get to know yourself better, too.
Something that helps me get through the hardest days is reminding myself that there is meaning in the suffering - Pain can be turned into purpose, as we can use this experience to relate to and help others going through their own challenges." 
