Lyme Disease

Join the Conversation on
Lyme Disease
60.3K people
0 stories
1.8K posts
About Lyme Disease
Explore Our Newsletters
What's New in Lyme Disease
All
Stories
Posts
Videos
Latest
Trending
Post

I’m new here!

Hi, my name is SophiaJoy. I am on a journey to heal myself holistically from chronic illness. I am looking for others to conversate and share with on a similar path 🌻

#MightyTogether #LymeDisease #Fibromyalgia #RheumatoidArthritis #PTSD #Grief #Anxiety #Depression

8 reactions 2 comments
Post
See full photo

Can Nature Help You Heal?

When I was researching my book “Love, Hope, Lyme: What Family Members, Partners, and Friends Who Love a Chronic Lyme Survivor Need to Know,” I had no idea how traumatizing being out in nature could be for some persistent Lyme disease survivors. Even seeing a deer on the side of the road could be triggering.

But I met some people who have attributed embracing the nature they once loved as helpful in healing while still maintaining tick prevention habits. One such person, marine scientist Alayna Bellquist, discussed on my Love, Hope, Lyme podcast how she was able to reduce her Lyme anxieties and challenges by fully embracing her love for the sea and horseback riding as critical to her recovery.

Are you comfortable being back in nature like she is?#LymeDisease #Babesiosis

Post

Lyme rage

This is the only way i know to let this beast go. Lyme rage, it’s real, it’s ugly and don’t get in the path of someone with it. I’ve had Lyme 38 years, the entire time I’ve lived across the river from Lyme CT. My husband has it, even my dog does. I’m the chronic one and the one that gets repeatedly reinfected. And hitting my head. I’m at around 30 or more concussions. Lyme and head injuries are not a good mix. Neither is a Candida die off, not the three B’s but systemic Candidiasis’. I’ve been on and off antibiotics since i was a kid. I’m 68 now, my gut has finally healed but my diet is killing me mentally, no dairy no sugar no wheat says the former carboholic. Candida needs sugar to live on. She begs for it relentlessly, Candy is an evil bitch. Chills, mood changes and horrific skin rashes that smell like death no matter how much i wash.

But today the thing I’m most angry about is what my psychiatrist told me. He’s affiliated with Yale the great Lyme disease deniers and torturers of Lyme patients especially women since the test rarely works on us. For 12 years i tried to convince him Lyme was real. He went with silence thankfully and not mocking and abuse. But 3 months ago he said all of your issues are likely due to the Lyme and i have an office full of patients like you.

Excuse me, could you repeat this again. You now believe persistent Lyme exists, no test needed, symptoms obvious.

i should be happy but I’m furious. My country has betrayed me. Used me as a guinea pig in their biological weapons experiments without my permission. Dropping ticks on us out of airplanes. But the ticks hopped on all the birds that landed on Plum Island and so a pandemic began. They were supposed to ask per their own manual Title 50, Google it.

My country stole my life, my career, my hobbies, my friends and family. All that’s left is my faithful and loyal husband with Agent Orange cancer. At least they admitted to that and pay him. Me they throw $2000/ mo at and expect me to pay for my own Lyme care.

I want reparations, i want medical care. , i need a caregiver since you took away my pain meds I’m bedridden in pain. You destroyed my life and that of millions of people.

Why did things change? COvid.! Ironically Covid acts a lot like late Lyme. Fatigue cognitive changes, memory issues and the bonus hypoinflation of the lungs or shortness of breath. And long haulers are all over the place.

As far as I’m concerned the biggest war is right here in the USA and caused by them. I get nothing from them, I’m left alone because no one knows the truth unless they looked. It’s there but even the Drs don’t know. It’s so bad that they finally had to do something. There are now CDC guidelines in place for late Lyme. If you’re on Medicare you can get a full tick borne panel paid for by Medicare at a specialty lab, do it. But preferably please use the built in executioner when you’ve had enough. It will come to your head usually with unbearable pain and dare to say wouldn’t you be happier dead. My answer is no. Fuck you Lyme disease and Uncle Sam.

I’m forever a POW of the USArny’s biological weapons experiments gone horribly awry and i live in my cell alone waiting to die

Tell everyone it’s really real (even tho we knew it)

the emperor is indeed naked but the people aren’t laughing they’re crying

Post

#ChronicIllness fighter . Living her best life! Overcomer ! #epilpseywarior Hidden Invisible Autitsc Striped zebra! With a creative mind!

#epilpsey Sezure awareness ; #MentalHealth
Hidden disbalty . Fribomlga warrior #LymeDisease #AspergersSyndrome / autism awareness! ADHD . #OsteogenesisImperfecta { brittle bones/ cognitive tissue disorder} hypersensitivity.
Sensory processing disorder! #JointHypermobilitySyndrome hypermobile Elers Danilo’s syndrome #RsdCrps

1 reaction 1 comment
Post

My First Real Hospital Stay!

Hey, beautiful ones! I recently had colon surgery, where I had to stay in the hospital. I wanted to be ready for whatever happened, so I packed to the 100th power!😆 I really don’t think I missed anything, lol!

Please watch until the end because I promise I have an awesome tip for making doctor appointments and hospital stays much easier!

What is something that you would recommend people take to the hospital? Something that they don’t need to forget! Thanks for watching!❤️❤️❤️Wendy
youtu.be/rz-pHkLy8CM #MyalgicEncephalomyelitis #fibromyalgia #chronicepsteinbarrvirus #LymeDisease #MultipleChemicalSensitivity #hypothyroidismunderactivethyroiddisease #MentalHealth #chronicillness #checkinwithme #DistractMe

What’s In My Hospital Bag?🤗Watch To The End For The Best Tip Ever!🥳

Hey, lovely ones!🥰 In today’s video, I share with you what I packed to take with me to the hospital for my surgery. (Surgery was successful!)🌻Watch until t...
5 reactions
Post

Hello

I'm so glad that this group is here. I am almost 65 years old and have only recently found out that I am HSP. Everything makes so much sense now.

The best part is that when someone now says to me: "You're so sensitive!" I can answer back with confidence: "Yes. Yes I am!".

I've actually belonged to The Mighty for a few years now (primarily for lyme disease). It was so cool to type in the letters "HSP" in the search box here and have this group show up. I look forward to meeting others and interacting in this group.
EDIT: I am so sorry that I have not responded to the kind people that have commented on this post. I don’t understand the notification system on The Mighty site. It’s perplexed me for literally years. (March 26 2024)

(edited)
50 reactions 16 comments
Post

Scared and frustrated.

At this very moment I feel like I have been cursed by a power I cannot see or understand. For the past 20 years my biggest health struggles we’re strictly mental health. #BorderlinePersonalityDisorder #PTSD #MajorDepressiveDisorder #SuicideAttemptSurvivors
After years of turmoil and a lot of self work I had finally conquered these mental health issues that had been dominating my life. I was able to come off all my medication last summer. I had never been so happy and healthy. I was just getting use to the new sensation of emotional stability in my life. Now my physical health has been struck down and is declining at a rate that is hard for me to fathom. 2 days ago I was diagnosed with Lyme Disease. Today according to my blood work my body is also being ravaged by the Epstein-Barr virus. Doctors also suspected I have a underlying autoimmune disease. My body feels like it is completely eroding away. Joints are getting worse daily. Physical pain and discomfort getting worse daily. Neurological symptoms continue to persist and get worse at certain moments. MRA imagining of my head for potential blood clotting came back normal. CT scan of head was normal. The medical care here in the southern tip of South Carolina has been abysmal. No infectious disease specialists in my area. Soonest a neurologist can see me is August. Tomorrow I will be hopefully flying back to Chicago area for better care. Blood work for the Lyme Disease has been back and forth. I tested positive now negative. The dismissal from both the doctors and my family has made it very difficult to stay calm. Very difficult. With the way things are progressing. I do not know how much longer I will last. I also don’t know how much longer I can endure this level of pain and discomfort. I would rather pass more kidney stones than this. I would rather get hit by a car again than this hell I have descended into. I’m not depressed or sad. I can’t help but feel the system is trying to euthanize me. #LymeDisease #ChronicEpsteinBarrVirus

4 reactions 3 comments
Post

I’m new here!

Hi, my name is Christina. I have been sick with Lyme disease since at least college. I'm now 51. I also have the hashtags below plus chronic pain from sports and car accidents.

#MightyTogether #BipolarDisorder #ADHD #PTSD #Fibromyalgia #Migraine

8 reactions 4 comments
Post
See full photo

Health update 2

I finally got my blood drawn for Lyme Disease on Monday this week. My symptoms are continuing to get worse every 24 hrs. Whether it’s Lyme Disease or something parallel to Lyme, it now is aggressively erroding my joints. This morning my SI joint gave out. All I was doing was putting some pants on. I collapsed onto the floor with my pant still around my ankles. Went face first into the hardwood floor. I have been dealing with SI joint dysfunction for years now due to the 6 cortisone shots have had in my low back (L5/S1 disk herniation 2011). My ankles, wrists, shoulders, and knees are inflamed and starting to swell. Tingling/numbness of both hands and feet is becoming more prevalent. My arms have become so weak I can hardly hold up my phone anymore. One of my family members was going to fly me back to Chicago for medical treatment this Saturday, but as of now and with how things are going. I won’t be able to sit on a plane or travel for that matter. Most of the support I have gotten has been here, on The Mighty. It was the feedback people gave me on here that finally narrowed it down what it most likely is, Lyme Disease. I would like to thank you for those of you who have sent me hugs, positive thoughts, prayers. You have helped me get through one of the scariest times in my life.
#LymeDisease #BackPain

2 reactions