Lyme Disease

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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)

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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

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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

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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

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3 weeks in to symptoms

Good afternoon. Just joined to group. I never imagined in 1000 years that I would be stricken with something like Lyme Disease. For the past 20 year my struggles have been mental health where my physical issues have strictly orthopedic in nature. Disk herniations, reconstructive surgeries, and other orthopedic issues. I moved to Bluffton, SC about 2 years ago from Chicago, IL. About 3 weeks ago is when I noticed drastic neurological symptoms. First was hypersensitivity or both light and sound. I work with animals and it can get very loud at work. I started to optical distortions. Like I was looking through a kaleidoscope. I told my boss and was rushed to the ER. After taking a CT scan of my head and checking my thyroid, which didn’t find anything. The doctor dismissed me a “Bipolar” and discharged me. Symptoms continued to progress and get worse. My neck has become super stiff, acute pain in my chest cavity, heart palpitations, acute pain around my liver. The chronic inflammation that already had been dealing with for year and had been managed well with holistic anti inflammatories like Turmeric and CBD oil. I have been on a anti inflammatory diet for 3 year now. The inflammation in my body has completely spiraled out of control in just 5 days. Migraine and inflammation type pain in my head, more specifically, most of the discomfort seems to reside around my brainstem area. Periodic numbness and tingling of both hand and feet. I am now having trouble going to the bathroom, both 1 & 2. My symptoms are getting more severe every 24 hrs and when they flair up, each flair up is worse than the last. The second doctor I consulted with, without performing and exam or running any tests or labwork also dismissed my issues as “mental health issues” I did get a referral to a neurologists but the soonest anyone with 200 miles of me can see me is in July, 2024. I have called the Mayo Clinic. They will not see me unless they have received documentation of an official diagnosis. This morning I finally found a PA locally who was willing to draw my blood and get the ball rolling. I have never been so dismissed or gaslighted in my entire life. It has gotten to the the point, when my symptoms flare up it feel like my brain is under attack by something. It has been difficult to remain calm or even rational for that matter. For those of you who are familiar with this battle. I can see some of you have been dealing with this much longer than I have. It has already brought me to my knees. I could really use your guidance and input. #LymeDisease

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Health update

Here I am. Not 3 weeks into the emergence of my symptoms. I’m in a lot of pain and discomfort. Feel like my entire nervous system is being attacked. Based of the discussions I have had. I am entirely convinced I have Lyme disease. Hopefully I can finally get for the appropriate blood test tomorrow. All 4 MD doctors who I talked to have dismissed my symptoms as either an ocular migraine or mental illness. Mayo Clinic said they would not accept me unless I had an official diagnosis. Family is gaslighting me left and right. My symptoms are progressive. I can’t drive because of my symptoms. Asked my family to take me to MUSC up in Charleston. They have refused telling me that nothing is wrong. At this point the symptoms are not what have brought me to my knees but the people around me. The symptoms are affecting my mood and my frustrations have started to turn to rage. I do not feel heard at all. I would be more understanding if I had been through an series of test and exams and then was told everything checks out. That’s not happening. So far. Only 2 tests have been done. A CT scan of head with no contrast, and they took blood to check my thyroid. Nothing more has been done. I have called so many Neurologist offices in the area. Soonest I could possibly be seen is in July. I understand getting angry won’t open any doors. I don’t know what to do at this point. My heart palpitations have become very painful and have started to scare me. This burning, blotchy rash has spread out over my neck and upper chest area. Light and sound sensitivity has remained a constant for 3 weeks now, my body odor has completely changed. I am struggling now to go to the bathroom, both 1 & 2. Losing weight rapidly despite eating plenty of food. I’m approaching how much I weighed when I was still in my early teens. I have just accepted the reality that nothing will be done until my heart stops and 911 is called. Preexisting chronic pain and inflammation has increased exponentially since the onset of these symptoms. New symptoms are emerging about every 24 hrs for me. I know there is nothing any of you can do for me. I just didn’t think I was this alone. I have always done my best to be a force of kindness and compassion in my life, but when I look around the room. I only see people who only care about themselves. Radical acceptance is the only tool I have that is keeping me in check. How can I say I am a force of kindness and compassion if I lash out in anger and frustration. I have learned and read many things about how things manifest themselves in our lives. I have struggled with Major Depressive Disorder since I was 14. My battle with depression has nearly cost me my life on several occasions. I struggled with suicidal thoughts and ideation for 12-14 years. It has only been the past 2 year that I finally had won the war against my depression. The past year, I have been enjoying life and do not recall the last time I had been this stable and even keeled. Now, after a little over a year under my belt of the happiness I had been pursuing my whole life, my body has started to fail me and people around, my family, the doctor who I have spoken to. I have never felt so dismissed in my entire life. I have already said goodbye to the 1 friend I have remaining in my life. Employer probably already looking for my replacement. No matter what happens, my body dies or whatever. I know it won’t be the end of me. I just hope whatever is waiting for on the other side is not an even tougher battle. That’s all I have ever known. Been in survival mode more the 2/3 of my life.

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Learning to change my mindset to change my perception

Hi, I’m very new to the group. I do need help in conquering my mind/mindset. Presently, I am going through antibiotic IV infusions twice a week for late stage Lyme. This is my second round of treatment. I’ve had twelve out of 24 treatments thus far. The Lyme is in my nervous system, connective tissues and joints. I’m experiencing tremors, speech difficulties, memory issues, nerve pain and sleep issues. And those are just the top five! I’m waiting for a neurology appointment to determine if those symptoms are all from the neuro Lyme or if it has triggered essential tremors or possibly Parkinson’s. During these treatments and given that it is flu/Covid/germ of the week season, I don’t get out much or at all, unless I’m going to the doctor. Here in Ohio, to say its “gloomy” this time of year is an understatement. My husband and I are typically active people. We love being on the water (we live on a lake). I have a dog, Jetta, that I adore. I feel so guilty for not being able to go hiking with her right now. Shes only 3 years old and she sleeps most of the day because, well, so do I. So, for the next five weeks my life will be on hold. In my mindset right now, I feel stuck, frustrated, angry, sad and defeated. I want to change this mindset. And I don’t mean just being positive. I mean to have a proactive mindset. I want to thrive while I’m healing. I am blessed in so many ways and I want to share my gifts of time, teaching and caring. I’ve been fighting this disease for eight years. I have been forced to give up a lot of things I loved that defined me. My volunteer work, running, working with animals, most of my social life, etc. Talk about “going through the change”? Oh yeah, I’m going through THAT, too! I’m sure you’re wondering about my poor husband at this point. He’s my best friend. He and Jetta go to every treatment with me. We are together 24/7 and couldn’t imagine it being any other way. Don’t get me wrong, we have our issues. This is all taking a toll on us both. If I’m down, he’s down. Which is another reason to change my mindset. We are both feeling stuck. Literally. Because we have plans to sell our house and move out of state. Where?? We have no idea. We were supposed to be traveling now and looking for our next chapter. And instead, here we are. I do have some ideas that may help. I’m really good at coming up with a plan. It’s my execution and follow through that gets shakey. No pun intended. 🤣 Oh, and did I mention that I have two adult sons who have epilepsy?? Yeah, so that keeps life interesting. Reoccurring life and death trauma. Boy, that never gets old! I was in remission last April. After a terrifying summer with my oldest sons seizures, I relapsed hard. Thats when the tremors and Neuro symptoms started. You know, as I proofread this, seeing it in black and white, it’s a wonder I’m functioning as well as I am. So there’s that. 🤷🏼‍♀️ #LymeDisease #Depression #Anxiety #mindset

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I'm new here!

Hi, my name is Shazzzilla13.
I am incredibly lonely in this battle for well being. I want to get help and if possible, help others because I am often lonely and riddled with anxiety.
#MightyTogether #Fibromyalgia #Anxiety #PTSD #Migraine #LymeDisease #MyalgicEncephalomyelitis

27 reactions 15 comments