Lyme Disease

Join the Conversation on
Lyme Disease
59.9K people
0 stories
5.7K posts
  • About Lyme Disease
  • Explore Our Newsletters
  • What's New in Lyme Disease
    All
    Stories
    Posts
    Videos
    Latest
    Trending
    Post

    Electrolytes Easy for GI symptoms

    Does anyone have any suggestions on electrolytes that are easy to digest or good for digestion issues? I have POTS and Mast Cell Activation Syndrome and some pretty severe GI problems currently. They stopped making the only flavor of Body Armor that I could drink without reacting. Maybe people with #IrritableBowelSyndromeIBS #InflammatoryBowelDiseaseIBD #CrohnsDisease #UlcerativeColitis #Gastroparesis have some things that have worked for them?

    #LymeDisease #PosturalOrthostaticTachycardiaSyndrome #MastCellActivationDisorder #MastCellDisease #Migraine #Depression #Anxiety #Autism

    9 reactions 4 comments
    Post

    New Story: 8 Weird Things That Can Happen When You Are a Wheelchair User Please Read & Share!

    bit.ly/3WBXP6h

    #Disability #MyalgicEncephalomyelitis #LymeDisease #DisabilityRights #Wheelchair #WheelchairUser #ChronicIllness #AutoimmuneDisease

    1 reaction
    Post

    Why I Wrote a Book for People Who Love a Chronic Lyme Disease Survivor

    When I wanted to learn more about the Lyme disease that afflicted someone I loved, I noticed there were few resources available. As I went on my journey to write the first book for those who loved a Lyme disease survivor but knew little about what even to ask, I was astounded by several things.

    First, I don’t have Lyme disease, nor have I ever have had it. I also do not have the credentials to offer medical advice. I’m a history major with an MBA.

    I don’t know what it feels like to suffer from a disease that impacts every part of your body and might change your life forever.

    I don’t know what it feels like to be alone with no support.

    At one time, all I thought you needed to do to support a Lyme disease survivor was to maintain a stress-free environment for them and know where to find the best gluten-free pizza.

    When I decided to learn more about Lyme disease, I realized I had a lot to learn. And here are some things I learned along the way.

    I found out that there was not a lot of guidance for the partners and families of chronic Lyme survivors who want to know how to support the person they care about to get their health back.

    There are some excellent books on treating the disease and some exceptional first-person testimonials about what life with this mysterious disease could be like, and I’ve read most of them. But there is no short, straightforward guide for partners and family members to understand what their loved one was going through.

    According to the Centers for Disease Control (CDC), I discovered that nearly 500,000 people are newly infected by Lyme disease and other tick-borne diseases every year in the United States alone. It’s an epidemic.

    I discovered that other complications from ticks called coinfections can wear down a person’s immune system.

    Some of these coinfections are parasites that can get triggered during stress and trauma. The coinfections can be just as harmful as Lyme disease.

    I was dumbfounded by the lack of health care providers who were Lyme literate and could provide effective treatment.

    I did not know that there were political issues with Lyme disease.

    I was appalled to learn that some official bodies did not acknowledge that chronic Lyme existed even in cases where their own testing criteria might still show an active infection, after the standard thirty days of antibiotic treatment.

    I did not know that insurance companies rarely covered Lyme treatment past thirty days.

    Participating in multiple Lyme disease online support groups, I saw that many marriages and relationships ended due to the stress, lack of support, and the partner’s lack of understanding about the disease and its effects. In addition, I was disheartened to hear that family members and close friends do not always believe their loved ones suffer from this disease.

    I also learned about the extremes people have gone to treat the symptoms. Medicine commonly known to treat parasites in horses, ingredients found in kitty litter, and machines that fought the infections by zeroing in on radio frequencies were widely used.

    I was unaware that people might have gone decades without knowing they even had Lyme disease yet endured constant pain and fatigue.

    I did not know the challenges with healing.

    So, I searched “Lyme disease and partner” on the internet and then purchased dozens of books on Lyme disease, women’s illness, and anxiety to educate myself further. I read them all and contacted many of the authors.

    I reached out to everyone who ever uttered “Lyme” to me in the past ten years.

    I sought out every Lyme organization I could find.

    I asked Lyme survivors questions and befriended many of them.

    I listened to Lyme podcasts.

    Although I was consuming all this information, the most important thing I was looking for and could not find was a book on how to support your partner or family member who has Lyme disease.

    What I discovered is there wasn’t one.

    So, I wrote one.

    I intend for this book to be read by partners, family, and friends who need and want to learn more about supporting a loved one with chronic Lyme disease.

    I hope my book helps to strengthen your relationship and understand what it is like to live in a world of Lyme.

    Where there is love, there is hope. With the right medical treatment.

    “Love, Hope, Lyme: What Family Members, Partners, and Friends Who Love a Chronic Lyme Survivor Need to Know” is available at www.amazon.com/Love-Hope-Lyme-Partners-Survivor-ebook/dp/B0B9Q8LX7G

    1 reaction 1 comment
    Post

    Jan 6, 2023

    Today I’m feeling quite awful. My brain feels in the clouds, anxiety level ridiculous, left side weakness. My extremities don’t want to do what I tell them to do. There’s a misfire between my brain and my body. I’m just under 2 months of being ill for 5 years. 5 years. Our youngest daughter just turned 5. She doesn’t even know who I am. The real me. The not sick me. The fun me. The active me.

    I’m feeling so down, hopeless, sad, guilty. A burden.

    I’ve been able to stay somewhat positive- as much as one can with this disease- but 5 years? That’s a big chunk of time. Our oldest son has 5 years of the real me. Our middle child had 3 and our youngest had zero.

    It’s wild to me how an illness can- for me- in a matter for just 3 days take over your entire life. Your whole being. Your soul.

    I’m exhausted. I’m so sick of being sick. #ChronicLymeDisease #Babesiosis #Bartonella #LymeDisease #InvisibleIllness #LymeWarrior

    9 reactions 5 comments
    Post

    Hi!! I’m new here...

    Hi! My name is Braylynne, and I just recently got a standard poodle that was being trained as a service dog for chronic illness, but the owner stopped working with him 7 months ago. He’s forgotten a lot of skills, but I’ve accepted the challenge of getting him back to where he was!

    My Instagram for him is @service.dog.phoenix

    #ServiceDog #PosturalOrthostaticTachycardiaSyndrome #ChronicIllness #LymeDisease #GravesDisease #AdrenalFatigue #Anxiety

    1 reaction
    Post

    Doing My Best… And I need Help but I’m not sure How

    Has anyone tried inpatient mental health treatment? Was it a good experience? Bad? Would you recommend? (I’m in the United States)
    I’m struggling with depression, anxiety, and suicidal thoughts. I’m currently safe, but I don’t feel like I have as good a handle on it as I usually do. And I’ve tried many medications and don’t respond to any of them.
    I have mast cell activation syndrome and am basically allergic to everything right now. I can’t touch my kitty or my dog or even my husband. It’s been about a year of hell. I can’t remember the last time I hugged my husband or had significant touch and I think that’s the major reason I’m in this state. I only got the mast cell diagnosis about a month or so ago. I’m doing my best, and my husband is too, but it’s been hell. #MastCellActivationDisorder #Autism #Depression #Anxiety #PanicAttacks #LymeDisease #PosturalOrthostaticTachycardiaSyndrome #SuicidalThoughts #DoingMyBest

    19 reactions 12 comments
    Post

    What is your go-to distraction at the beginning of a pain flare? #ChronicPain #LymeDisease #Fibromyalgia #Reynauds #LivingWithPOTS

    10 reactions 14 comments
    Post

    PEMF Therapy for Lyme disease

    PEMF does not have the negative effects associated with invasive surgery or drugs because it addresses the underlying cause rather than just treating the symptoms. PEMF therapy is one of the finest alternative therapies for Lyme disease.

    For more information, visit www.sentientlight.com