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Life in Lyme Light Posts

Story 122

© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life? What inspires you?

I am 58 years old. My name is MUS. I live in the Netherlands. I have suffered from strange pain since I was a child. In my early twenties I had paralysis in my legs. They told me I was depressed again… but I felt there was more… PLEASE ALWAYS LISTEN TO YOUR BODY. 

In 2010 march I had a kind of stroke. Bell’s palsy, I have suffered for more than 5 years from head cluster ache. All my things looked like ms (multiple sclerosis). But they couldn’t find anything. The only thing the doctors found out was that I was depressed. I was not. 

In the meantime I was losing my husband, friends and family. I felt very alone. I had a positive lyme test in 2015. But still the doctors did not believe me. The CEO of the laboratory was a good one. She arranged an internist who gave me an infusion of 4 weeks… things started to change. I began to feel better. But after a few months everything started to come back. 

I left my grown up daughters to move to Spain. Alone. I found a neurologist over there who helped me again… the doctors in Holland said it was illegal to give me antibiotics again. But the Spanish specialist said, you are a sick woman. 

It helped again for more than 18 months. Last year I moved back to Holland to be near my daughters. The pain is back, I am desperate, they still tell me I am depressed.

Yesterday was a black day… I could not see any light. I feel hopeless, misunderstood and very alone.

But there is a light at the end of the tunnel. I will try to get a new appointment in Spain because he said I could come back when the pain returns.

So that’s my new little bright spot, it will take some time.

Always believe in yourself️.

With love, MUS

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Story 121

© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life?

In 2008 I got infected, and wasn’t diagnosed until 2016. I lost my health, career, money, friends, family’s belief if I was ill or not, and my purpose. Lyme takes you to death’s door, but it doesn’t kill you. You’re technically alive, but you’re not living. Losing your health doesn’t allow you to sustain anything. You’re suddenly stationary in life. It’s as though someone pressed the pause button when I got infected, and I’m waiting so so badly to press play, but nothing happens. I’m still waiting…

What inspires you?

At my lowest point mentally and physically I could not walk without assistance. I could barely hold myself up and had difficulty speaking and digesting information. I recall telling a Lyme doctor, “I’m at the end…”. She said, “That’s fantastic! That means you’re at the beginning”. That has always stuck with me and has become my mantra of hope.

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Story 120

© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life?

Lyme stole the life I once had. Used to love jumping and competing with my horse, but I haven’t been on him in over a year because of the pain, balance and a million other issues. Lost many friends because I couldn’t go out like I once could. My daughter has witnessed intensity at a young age and unseen pain that now has her terrified of any pain. 

It’s hard at times to do daily chores and what not. I’m sick of seeing doctors, trying treatment after treatment that doesn’t seem to get me anywhere. My family has spent thousands of dollars on me to help me get better. Along with putting my education on hold because I was too sick to attend class. 

What inspires you?

On the flip side, I’m grateful because my walk with God has become very strong, my fiancé has the heart of Job to deal with this and not being able to help other than be by my side. He helps me with many of my treatments and has become quite the farm hand to haul hay for my horse because I don’t have the strength to throw bales like I used to. 

I no longer fear death, more like stare it down and I’m like bring it on, you won’t win! I’ve learned so much about medicine, vaccines and medical treatments. Who needs to go through MD school when you can have Lyme? LOL 

All in all, we each have a different journey and story to tell, it’s just trying to see the silver lining at the end of the day. Along with, valuing those who have stayed with us through our journeys. I hope to make it through OTA school, so I can use my knowledge and experience with Lyme to help others to heal, at least bringing them the joy they lost.

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Story 119

How has Lyme Disease affected your life? What inspires you?

I don’t remember being bitten nor do I remember seeing a bullseye rash, the staple for your textbook Lyme case, although a majority of cases never get the rash anyway making diagnosis complicated. I’ve scoured pictures looking for any evidence. Was it from the beach or a botanical garden in Sicily? Did it happen seven years ago and resurface with extreme physical and emotional trauma, as it does? I honestly wouldn’t have known either way, I didn’t grow up in an area where ticks were top of mind. I didn’t get checked for them as a kid and as far as I know I’ve never seen one.

I remember being on the phone with a holistic healer who told me my symptoms sounded like chronic Lyme. I immediately googled it and became lightheaded as panic washed over me. It all made so much sense and at the same time no sense at all. When I finally was tested for the standard blood test at a Lyme clinic, the doctors made me feel like I was insane. They refused to check for co-infections nor did they believe in chronic Lyme and no rash? I must be kidding them — they tested me, sent me a letter that said negative and sent me on my way. I was embarrassed so I closed that chapter and continued searching for other answers. 

It wasn’t until finding a LLMD that it all finally sunk in. The clinical diagnosis was made within one appointment. So simple that I almost didn’t believe it. And then the layers began to peel back – Lyme/co-infections, mold toxicity, MCAS. The unreliability of testing is unbelievably dangerous and frustrating, the gaslighting from doctors is damaging — not to mention the emotional and physical toll of being sick without understanding how or why.

I’m here to share my journey however vulnerable or raw that gets. I’m here to connect with others who are chronically ill and are struggling or who have struggled to offer support and information. That’s the power we have — to spread awareness and help each other along the way. <3

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Story 118

© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life? What inspires you?

When you get a disease, it is as if you got initiated into a world of misfit toys. You get a membership card that has no expiration date. Friends may visit but you no longer belong in their world. This land of misfit toys is filled with doctors, needles, and medicine. I experienced this land as filled with physical pain and suffering. While in the real-world friends fled my life like roaches when a light is turned on in a dark room.

An orthopedic surgeon tested me for Lyme Disease because my ankle stayed swollen after a hiking accident. I had numerous medical problems (brain fog, memory loss, and heart surgery) before the diagnosis but no indication that Lyme could be the source of the problems.

Lyme Disease took over my life. I don’t remember the tick bite, but I clearly understood there was a war inside my body already underway. The first shot was fired with the act of taking antibiotics. As the bacteria was being killed the level of pain ensued. My joints swelled and the simple act of walking was replaced with the sensation of stepping on shards of glass. Crawling became the least painful mode of moving. The desire for pleasure vanished. Eating, drinking, and talking became a chore. The water from the shower was replaced by the feeling of nails entering my body. Sounds and bright lights became the enemy. This was a level of suffering that welcomed death. As this agony drew me further and further down the rabbit hole.

It took 2.5 years of working with a Lyme doctor. Biofilm protocol, months and months of antibiotics and IV Vitamin C to kill all of the bacteria. I thought that after I killed all the bacteria my life would go back to normal. I would just pick up where I had left off. The real work had just started. I had changed and for better or worse I needed to fall in love with who I had become. I had to repair my brain from the damage of the disease, and it was not easy. I already had an MST and I was back at the community college taking a basic computer class. It was humbling. I was 5-6 steps behind everyone, and I just had to be okay with it. It took almost 6 full years of work, but my brain function has returned to normal.

I don’t wish this illness on my worst enemy, but I wouldn’t trade my experience for anything. There is this deep compassion, kindness, and sincerity that I have that was born from surrendering over and over each day. It isn’t something that can be purchased or given. It is from making a decision each day to find love and grace.

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Story 117

How has Lyme Disease affected your life?

I’ve always blamed myself for why I felt sick. I didn’t understand what I was going through for a large portion of my life. I had to take things into my own hands and seek the right kind of help. The journey never ends or goes away, this is a lifetime ordeal that one has to grow strong enough to live with and push through everyday.

What inspires you? 

Dogged persistence

My journey inspires me to see the suffering of others and to extend a helping hand if they will accept it.

~Wings like a cool lake at the beginning of spring. Having gone through a rough and dark winter only to be warming and finally waking up in spring.~

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Story 116

© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life? What inspires you?

Today makes 14 years living with Lyme. It’s taken so much away from me and my daughter. When I 1st became sick, she was just a little girl in elementary school. Being a single parent, it stole a whole lot from her too. I have to say, I don’t feel optimistic or positive about things. I’ve had a very difficult 14 years, especially the past 6. I have a few close friends who have supported me and although they cannot say they fully understand what it is like to live with Lyme, they have definitely shown me they care. I’ve been told by a few LLMD’s (including the infectious disease specialist who diagnosed me) they don’t really have any other options to suggest to try. These are devastating and depressing words to hear. It’s true you “mourn” for the loss of the life you used to have. Because I cannot work and live off SSDI, I’ve struggled financially, emotionally and mentally beside the obvious physical limitations. I wish there was more funding and research, and more awareness for this disease. It’s the invisible disease in which people suffer from in silence.

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Story 115

© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life? What inspires you?

Thank you to all that follow my Instagram (@outdoorsyadventures8701). So as you may have noticed I haven’t been doing a whole lot of outdoorsy stuff lately. Here’s why — I was diagnosed with Lyme disease quite some time ago. Makes sense given that hiking and spending time with nature is my passion. I was treated after years of fighting with doctors and finally got them to test me. Positive! 

Now since I was not treated within 2 weeks of being infected I continue to battle symptoms and unfortunately until CDC, FDA and other medical organizations finally come to an agreement on a proper true treatment symptoms can linger for years and treatment is none of existent for chronic Lyme sufferers. Seems there may be some corruption in those guidelines to treat Lyme and as a result many people are suffering and doctors who want to help are having their licenses yanked and face lawsuits by the corrupt organizations writing those treatment guidelines. 

So… Yes weather is perfect, but please before you hike wear long pants, cover yourself with DEET and follow all other recommendations to keep yourself and your kids and pets tick safe. If you are bitten and have immediate symptoms insist that you get tested immediately. Doctors in Ca are ignorant to Lyme and have no clue what to look for and don’t let them tell you Lyme does not exist in California. It does!! And it is on the rise. Google CDC stats for numbers. Again, keep yourself your kids and pets tick safe this spring and summer as we enjoy the outdoors. One bite can turn your life upside down. Be safe ✌ Peace out!

“Like a butterfly stuck in a chrysalis waiting for the perfect moment. I was waiting for the day I could burst forth, fly away and find my home” – Emme Rollins

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Story 114

© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life? What inspires you?

May is Lyme awareness month and I wanted to share a beautiful image – a small selection of butterflies representing stories from Lyme Disease sufferers (butterflies from stories shared here!) I wanted to pay tribute to each and everyone of them and send love, light and hope for their healing journey.   Ƹ̵̡Ӝ̵̨̄Ʒ 

In the last 18 months, since I received a positive diagnosis for Lyme, I have learned so much about this debilitating disease, which is caused by the borrelia virus carried by ticks. I have been studying Nutritional Therapy at the College of Naturopathic Medicine and decided to take a year out before my final year to research more about Lyme and complex chronic illnesses which so often go hand in hand. Although diagnosed with ME at age 19 my real healing journey began about a decade ago, however I was relieved to finally get to the root of what had probably triggered my chronic fatigue, gut symptoms and autoimmunity for all these years.

During this last year I have met so many amazing people who suffer with Lyme and related illnesses and I have been blown away by their strength and determination, and how despite their symptoms they keep going everyday in pursuit of their health. For without health we have nothing. Lyme is a poorly understood disease and finding answers is not easy, getting treatment even harder, as it’s so often very costly and still largely not understood or recognized by the healthcare profession so many people are not as fortunate as me.

During this current time of isolation we find ourselves in, there is much that can be learnt from people suffering with Lyme or any chronic illness. These are people who have had to adapt to living in isolation, who understand grief as the life they knew was lost, live in fear of what the future holds, often lose jobs and each day must learn to take utmost responsibility to support their health. All of which many of us are now facing.

My gratitude goes out to everyone who has helped me on my journey to recovery… the naturopaths, the healers, the therapists and other Lyme sufferers I have learnt so much from each and every one of you. I now wish to shine my light in helping others on their healing journey.

For more information about Lyme Disease visit lymediseaseuk.com

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Story 113

© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life?

Lyme will never completely disappear, mostly the tests can only show a very aggressive form, which means that if you have it “under control” the tests won’t show it anymore. But it’s like a sleeping disease—you can’t see it and can’t find it, nor cure it. It’s always there but we’re to try to keep it under control. 

I’m working with a holistic doctor who’s really great. He teaches me a lot about my body and my illness. He’s devastated every time a treatment doesn’t work for me. When I was a baby they put me on vaccinations and put them 3x as strong because a lot of babies were dying from coughing disease (I don’t know the English name), so my body had to fight so hard to get the thing out of my system—that now I don’t accept any medication. 

We’ve tried so many treatments and medications but I’m just getting sicker, I had to stop doing my sport which is my life, and I’m now trying to work my body because I’m losing my strength and feeling in my muscles. It sucks it really does.

Nothing helps yet, just trying to workout and get my condition up. I notice it’s better to go for a walk instead of staying in bed — all day in bed days.

What inspires you?

“If I can do all the things so well and stay so strong while being so sick, how well would I have been if I wasn’t sick?”

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