Lyme Disease

Create a new post for topic
Join the Conversation on
Lyme Disease
60.4K people
0 stories
1.8K posts
About Lyme Disease Show topic details
Explore Our Newsletters
What's New in Lyme Disease
All
Stories
Posts
Videos
Latest
Trending
Post
See full photo

Cloak Not Mine

Silver strands of stress, woven

Creases of grief interrupt skin

Burdened by pain, I wear unease

I'm wrapped in a cloak of this disease

-

The weight, the worry, the weariness

The fog, the ache, the loss, the less

Not one article can I set aside

All I can do is strive to hide

-

Layers revealed and judged, I dread

Deemed unfit by what I cannot shed

Under it all, I lie and wait

Praying I won't suffocate

#MightyPoets #LymeDisease #ChronicFatigue

(edited)
Most common user reactions 1 reaction 1 comment
Post

Support CARE for People with Chronic and Invisible Illnesses

Dear Fellow Lymies,

As someone who has personally struggled with being misdiagnosed and dismissed by doctors, I know how isolating and frustrating it can be. I’m sure many of you can relate to feeling unheard in your own health journey. That’s why I joined CARE for People with Chronic and Invisible Illnesses (CARE), an organization that is doing incredible work to support those of us facing these challenges.

After YEARS of not being taken seriously despite experiencing very real symptoms, I decided to take matters into my own hands and found a Lyme-literate doctor (LLMD) who finally diagnosed my mystery symptoms as Lyme, and alternative treatments that truly made a difference in my life. This experience opened my eyes to just how essential it is to have an organization like CARE — one that acts as a voice for those suffering in silence and provides valuable resources for individuals navigating chronic illnesses, including Lyme disease and co-infections.

Today, CARE is working on some truly impactful initiatives that I believe will change lives. We’re developing educational resources, offering guidance for families and healthcare professionals, and planning courses to empower people with evidence-based strategies for managing their health. Our long-term goal is to create a work environment where people with chronic illness can thrive without compromising their well-being.

We’re currently launching a fundraiser to help us achieve these ambitious goals. If you are in a position to give, I invite you to join our community of supporters through a donation. We are deeply grateful for any amount you can contribute, and all donations are tax-deductible to the fullest extent of the law. To learn more about our campaign and make a donation, please click on the following link: chuffed.org/project/117697-care-about-invisible-illness

I truly appreciate any support you can offer, whether it’s through a donation, sharing this message, or joining us in our mission to support those living with chronic and invisible illnesses.

Thank you so much for your generosity and belief in this cause. Your support means the world to me and to everyone who benefits from CARE’s work.

With heartfelt gratitude,

Lauren

Help Improve Life for People with Serious Chronic Illness

“I was more or less bed bound for a couple of years, (...)and meanwhile the doctors were telling me there was nothing wrong with me. So I was under pressure from employers, family and everyone else to stop imagining that I was ill, and to get out of bed and get on with my life.”1
Most common user reactions 1 reaction
Post

Dear Fellow Lymies,

As someone who has personally struggled with being misdiagnosed and dismissed by doctors, I know how isolating and frustrating it can be. I’m sure many of you can relate to feeling unheard in your own health journey. That’s why I joined CARE for People with Chronic and Invisible Illnesses (CARE), an organization that is doing incredible work to support those of us facing these challenges.

After years of not being taken seriously and sharing the very real symptoms I had (which were later figured out to be Lyme), I decided to take matters into my own hands and found a Lyme-literate doctor (LLMD) who diagnosed me and alternative treatments that truly made a difference in my life. This experience opened my eyes to just how essential it is to have an organization like CARE — one that acts as a voice for those suffering in silence and provides valuable resources for individuals navigating chronic illnesses, including Lyme disease and co-infections.

Today, CARE is working on some truly impactful initiatives that I believe will change lives. We’re developing educational resources, offering guidance for families and healthcare professionals, and planning courses to empower people with evidence-based strategies for managing their health. Our long-term goal is to create a work environment where people with chronic illness can thrive without compromising their well-being.

We’re currently launching a fundraiser to help us achieve these ambitious goals. If you are in a position to give, I invite you to join our community of supporters through a donation. We are deeply grateful for any amount you can contribute, and all donations are tax-deductible to the fullest extent of the law. To learn more about our campaign and make a donation, please click on the following link: chuffed.org/project/117697-care-about-invisible-illness

I truly appreciate any support you can offer, whether it’s through a donation, sharing this message, or joining us in our mission to support those living with chronic and invisible illnesses.

Thank you so much for your generosity and belief in this cause. Your support means the world to me and to everyone who benefits from CARE’s work.

With heartfelt gratitude,

Lauren

Help Improve Life for People with Serious Chronic Illness

“I was more or less bed bound for a couple of years, (...)and meanwhile the doctors were telling me there was nothing wrong with me. So I was under pressure from employers, family and everyone else to stop imagining that I was ill, and to get out of bed and get on with my life.”1
Post
See full photo

A Mighty Together EASY Game That Needs All Of Us To Work 🤗 👋 🎤🎶🎧 #DistractMe #MightyTogether #MentalHealth #CheckInWithMe

Simply remember or find/Google/ask Alexa or Siri……a line or part of a line from a song or a song title that was written for Empowering all of us.

You are welcome to add in even just one. This is easy because it is not even your words that you are adding in or articulating. The words have been given to us.

For example: I often think of this part of line from a song: “I am going to dance on broken glass.”

And this part song title, part of a line of the lyrics:
“Better Days are coming, if no one told you.”

And this longer one section of another great song:
“DON'T YOU TELL ME WHAT YOU THINK THAT I COULD BE;
I'M THE ONE AT THE SAIL
I'M THE MASTER OF MY SEA.”

And this small section of a song that I hold close to my heart:
“Just remember who you are; how you were never one for folding; how you never liked the corner; how the dark don’t even know you.”

Let’s Go Big on this one.

Let’s make this a holiday gift you can give for free that could be exactly what Many others need Right Now.

This ties in with the image I chose for this because we are going to be taking inspiration from Christopher Reeve aka Superman in the 1978 film who famously said "A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles".

So, I say YOU are a hero.

One of our Mighty family with a boatload of reasons to question this quote and anything, just a couple days ago, found, and in a way, smartly challenged my about 4 months old post with Christopher Reeve’s other famous quote “Once you choose hope, anything is possible.”

So, if you know anything about me, you know I accepted this challenge to help her and to help even more of us.

So I went to work for all of us— researching and drafting an impactful reply (and I can at times put hours into this work for all of us.)
Because YOU are worth fighting for.

So, I researched how he could say these profoundly optimistic and empowering statements when he, Christopher Reeve, a former role model to the world as Superman, was paralyzed from the neck down after a horse riding accident at age 42. His mother wanted doctors to remove his life support, because she thought that he wouldn’t want to live like this, but he fought back.

So the meaning to his quote about HOPE is: Hope, in this sense, is a decision. It is the most important decision we can make.

This choice of Hope also is not just wishful thinking, it has to be rooted in a Believing, it must be in the form of Optimism, and it must be held together by handing it over to a trust in ourselves, a trust in the universe having our back, to any form of spirituality that does not even need to be religion based faith.

Absolutely Right Now, All of Our Mighty Family Needs help with feeling Empowered to be Hopeful and Optimistic And YOU can be a hero and participate in this mission that is greater than all of us, greater than our own social anxieties, greater than our own fears and doubts, greater than our fatigue…

Whenever you see this post, especially through the rest of the entire holidays —All of them coming up for all denominations and through and past New Years…add in a line or part of a line from a song, or a song title, that was written for Empowering all of us. That was written to speak to all of us. To Connect All of Us.

GAME ON.

GAME FACE.

YOUR friend in this hard thing called life,
Dawn

#Depression #Anxiety #GeneralizedAnxietyDisorder #MajorDepressiveDisorder #PersistentDepressiveDisorder #MoodDisorders #Selfharm #Selfcare #Grief #ChildLoss #BipolarDisorder #Suicide #SuicidalThoughts #SuicidalIdeation #SuicideAttemptSurvivors #BorderlinePersonalityDisorder #ComplexPosttraumaticStressDisorder #ChronicPain #ComplexRegionalPainSyndrome #Fibromyalgia #MyalgicEncephalomyelitis #ChronicFatigue #ChronicFatigueSyndrome #PTSD #Trauma #PostTraumaticStressDisorder #AlopeciaAreata #AutoimmuneThyroidDisease #CrohnsDisease #AdrenalInsufficiency #AutonomicDysfunction #Cancers #LymeDisease #Migraine #ParkinsonsDisease #MultipleSclerosis #RareDisease #ADHD #BipolarDepression #AnorexiaNervosa #EatingDisorders #PosturalOrthostaticTachycardiaSyndrome #POTS #AutismSpectrumDisorder #AspergersSyndrome #Addiction #CerebralPalsy #RheumatoidArthritis #Arthritis #Disability #AddisonsDisease #ChronicIllness #CysticFibrosis #DownSyndrome #Epilepsy #MyCondition #musictherapy #Music #Songs #MightyMusic #IfYouFeelHopeless #WarmWishes #Agoraphobia #SocialAnxiety

Most common user reactions 87 reactions 24 comments
Post
See full photo

Leaning on knowing my Resilience -Personal Example

Yesterday to this morning for me is another example of why I am so thankful every day that I took the University of Pennsylvania’s online course on learning and applying resilience skills, so grateful that I typed up every single word that was taught, and that I recently started this group to share this critical knowledge from the actual people that researched this.

U. of Penn’s definition of Resilience is not only the ability to bounce back from adversity, but also the ability to grow from challenges.

In this course, Dr. Karen Reivich focuses on the psychosocial aspects of resilience. The aspects of resilience that are determined by your psychology, and by your social relationships and interactions.

So, yesterday was one of the rare days within recent years that 1) my fatigue completely took hold of me, and 2) my brain’s sleepiness was to the point that most of my brain would not wake up - all day- and I could see myself not able to function practically at all.

It’s not like this was the first time this ever occurred, and it’s always a possibility, but it is still very hard to watch myself go through this and it is also very hard to wake up from the next morning—the kind of “slap in the face” reminder that oh yeah, I live with a chronic illness that can at times, and I will never know when, will have me almost completely disabled.

So, this morning I woke up with this “setback.” And I look at it like I was brought to a “fork in the road.” And now while yesterday’s adversity was not in my control, this morning, which I always work to look at as a fresh, new day full of good possibilities, it was actually now in my control as to which way I let myself go in my mind at this “fork in the road.”

Of course upon waking up, my mind started on autopilot and took me the wrong direction. Then, the moments that I made myself ready for, the clarity, the practice of never staying in autopilot and moving forward on purpose, with intention, with as much control as I can have and before it gets too hard to get the control back.

I turned my brain’s thinking around, I put my focus on the truths that were on my side- including but not limited to the fact that I Have Bounced Back From Much Worse Than This…;and I turned my mind away from dangerous cognitive distortions and right then and there pretty fast I would not let the negativity bring me downward.

Yesterday, I still had the mindful awareness to apply radical acceptance, non-judging, patience, trust, and just letting be with what is — for this one day -these are part of the 9 Attitudes of Mindfulness that I have begun to write posts about here for you. These all link together with the skills of resilience.

What you will learn too here, amongst other important things is that -it is when we start paying attention to our inner experience, that we rapidly discover that there are certain thoughts and feelings and situations that our mind seems to want to hold on to.

And amongst other what are called “resilience interventions” that I applied were these skills that I committed to in living with intention- what are called “protective factors” that I nurture every single day so they will be there for me when I need them most, when I have to dig deeper from a wider range of resources —

I learned the Critical Skill of Optimism —which gives us the attitude to continue to persist —and I learned how Optimism is the most important factor in resilience and in all of life - well-being and strong relationships;
I commit myself to living for clarified purposes that are bigger than myself, this is not limited to relationships, it is even better for our wellbeing to have an attachment to something larger than yourself which might also be to a mission, to a purpose, to an idea, something that you believe is critically important and worth fighting for (by the way, my personal mission is that all of you are worth fighting for);
I learned what my Personality/Character Strengths are and I learned how to leverage them;
I Developed Mental Agility;
I learned how to create a “buffer of positivity”, and what is called the “Broaden And Build” theory of positive emotions;
I learned how to take control of “thinking traps” by applying “cognitive strategies”…

All of these are what is so effective about the newest branch of psychology that I approach my life by to overcome all that I do overcome— where in addition to everything else, we build strengths supports.

Positivity Psychology, a somewhat newer term, describes a dual approach to mental health- where we build strengths supports, and healthy lifestyles, as well as treating illness and distress.

AlI of this is all what I will keep breaking down into chunks in most of my posts here to this group.
This takes some work first on my part - to keep breaking down the many variables- so bear with me.

#MentalHealth #MajorDepressiveDisorder #ChronicFatigue #ChronicIllness #Disability #ChronicFatigueSyndrome #Depression #Anxiety #MoodDisorders #MotorDisorders #BipolarDepression #BorderlinePersonalityDisorder #AutismSpectrumDisorder #AnorexiaNervosa #EatingDisorders #BipolarDisorder #Selfcare #ADHD #Relationships #FamilyAndFriends #Fibromyalgia #ChronicPain #Cancers #Addiction #Selfharm #SuicidalIdeation #SuicidalThoughts #SuicideAttemptSurvivors #Suicide #ComplexPosttraumaticStressDisorder #PTSD #MyalgicEncephalomyelitis #PostTraumaticStressDisorder #Trauma #RheumatoidArthritis #SocialAnxiety #LearningDisabilities #CrohnsDisease #GeneralizedAnxietyDisorder #PersistentDepressiveDisorder #RecurringMDD #TreatmentresistantDepression #Mindfulness #MDD #TRDSupport #EhlersDanlosSyndrome #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #MultipleSclerosis #LymeDisease #MajorDepression #ClinicalDepression #MotivationMonday #resilience #Grief

Most common user reactionsMost common user reactions 16 reactions 2 comments
Post

Traveling Tips For the Holidays?!✈️🚘🦃🎄

Hey, y’all!!!🥰 Here are my 22 TRAVEL HACKS for those of us with chronic illness! Which one is your favorite?! Let me know what you think! 💕Wendy
youtu.be/jEIsqUNKDEw #MentalHealth #ChronicFatigue #ChronicFatigueSyndrome #Fibromyalgia #DistractMe #Spoonie #CheckInWithMe #LymeDisease

Most common user reactions 4 reactions
Post

I'm new here!

Hi, my name is OlderAndHealthy. I'm here because I want to share exactly what cured my Lyme Disease, which is the same protocol that cures diabetes, most Alzheimer's, arthritis, and all the more than 600 known pathogenic diseases.. #MightyTogether #Fibromyalgia

Post
See full photo

Been awhile since I posted, please check in with me for I have no one.

Been battling Lyme disease since mid February. I got it at work since I work with dogs. Was out for a month and returned earlier than I should have to be there for the company and my coworkers. Continued working despite excruciating pain and maddening chaotic symptoms. The company started to accept too many dogs for us to handle in the kennel and was even accepting people aggressive dogs even though it says on our website under no circumstances we don’t accept aggressive dog and even dogs without the proper vaccinations which is required by law. Last Friday I brought up my concerns to my boss and as of 9:30am today I was fired. Been working there for over 2 years and had gone above and beyond for my coworkers and the company as a whole. Right now I have never felt so numb and borderline denial hoping this is just a nightmare I’ll wake from. My mind put up walls immediately so I would not completely break down in front of management. I expressed legitimate concerns, and I got fired for it. I live in South Carolina and the labor laws don’t protect me in this regard unfortunately. I feel like I have been kicked in the teeth and thrown in the garbage. My soul is covered in nothing but old scares and open wounds and the very people who I worked so hard for and put my faith in and loyalty in shanked me in the back. A whisper in the back of my head is telling me to let go, but another part of me feeling throughly betrayed and taken advantage of. I’m 35 and have yet to have an employer who actually values integrity. Not a single one. Sure they all say the right things but their actions contradict their claims of being good and honest people. I love dogs. I had developed deep and loving bonds with 100s of dogs and cats. Now I will never see them again. Since I was fired I’ve just been staring off into nothingness. I did not see this coming, I had no back up plan. I’m still paying off all my medical expenses since February. I have no idea how I will feel as the week goes on. Please please I just need some compassion right now and some support. #LymeDisease #BorderlinePersonalityDisorder #PTSD #MajorDepressiveDisorder #Depression #MentalHealth

Most common user reactionsMost common user reactions 63 reactions 22 comments
Post
See full photo

🥹✨Habemus Papam!!

Finally, after years of uncertainty, I have found the unwanted guest that is causing me quite a few management problems: it is Mrs. Borrelia Burgdorferi, a bacterium transmitted by infected ticks that causes Lyme Disease.

In Italy, in about 10 years, just over a thousand cases of this disease have been diagnosed, but the incidence could be higher considering that people still speak little and the differential diagnoses often leave something to be desired.

In fact, in 20% of cases the erythema migrans, which is the main symptom recognized by doctors, does not appear.

This can make diagnosis more difficult, and when the body can no longer handle the infection, I assure you that the symptoms can become strange and unpredictable!

My hope now is to finally find a specialist who can follow me on this journey, to check whether this cute arthropod has brought with it other bacteria and assess any damage.

Even if finding out so late makes everything longer and more complex, I'm relieved to finally be on the right path and not to have stopped in my search!

🌟 LESSON #1 : Don’t Give Your Power Away!#MightyTogether #malattiadilyme #borreliaburgdorferi #diagnositardiva #lymeawareness #chroniclyme #percorsodiguarigione Finalmente, dopo anni di incertezze, ho trovato l'ospite indesiderato che mi sta causando non pochi problemi di gestione: è la Sig.ra Borrelia Burgdorferi, un batterio trasmesso da zecche infette che provoca la Malattia di Lyme.

In Italia, in circa 10 anni, sono stati diagnosticati poco più di mille casi di questa malattia, ma l’incidenza potrebbe essere più alta considerato che se parla ancora poco e le diagnosi differenziali lasciano spesso a desiderare.

Nel 20% dei casi infatti l’eritema migrante, che è il principale sintomo riconosciuto dai medici, non compare.

Questo può rendere più difficile la diagnosi e, quando il corpo non riesce più a gestire l’infezione, vi assicuro che i sintomi possono diventare strani e imprevedibili!

La mia speranza adesso è di trovare finalmente uno specialista che possa seguirmi in questo percorso, per verificare se questo simpatico artropode ha portato con sé altri batteri e valutare gli eventuali danni.

Anche se scoprirlo così tardi rende tutto più lungo e complesso, sono sollevata di essere finalmente sulla strada giusta e di non essermi fermata nella ricerca!

🌟 LESSON #1 : Don’t Give Your Power Away!

(edited)
Most common user reactions 1 reaction