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Lyme Disease Support Network

New to forum and to Lyme


#1

Hi everyone. I just joined the forum after being tentatively but positively diagnosed with Lyme (I don’t know how to put it, the Lyme associated bacterias were all found in my system but doctor says it’s still not a hundred percent) a few days ago. I’m fifteen years old and was probably bitten when I was around 7. I never had a rash, but I had flu like symptoms which were misdiagnosed as mononucleosis. After that, the Lyme was supposedly dormant in my system until a few years ago. I began experiencing anxiety and heart palpitations in 7th grade which got increasingly worse throughout 8th and 9th and I was understandably diagnosed with anxiety. In 8th grade I started having hyperacusis and more specifically misophonia which gradually worsened throughout the year and by September of 9th grade, it was so bad I had to drop out of school entirely. Lyme wasn’t even a consideration until the misophonia became so bad that I was going to a different doctor every month and doing a bunch of tests for different things, but they actually thought I had PANDAS originally. Later, after another test, it came back mostly positive for Lyme, and at this point, I’m fairly convinced I have Lyme disease.

The weird thing is, I haven’t had any of the most common symptoms associated with Lyme, but I’ve had a few of the rarer ones. I never had a rash, never experienced joint pain, never had noticeable fatigue or brain fog. I’ve noticed some short term memory loss but rarely enough that it doesn’t interfere with my life. The biggest and worst symptom for me is the misophonia. At first it was just slight annoyance at my little brother for whistling, singing, yelling, etc… Then it was my dad chewing loudly, then my whole family chewing, then anyone and everyone chewing anything food or gum related and now, I can’t hold a conversation with anyone that I’m familiar with for even thirty seconds. Like I said, I dropped out of school, and I haven’t seen my friends for nearly a year, I haven’t had a conversation with anyone in my family other than texting my mom in a year, and I spend literally all my time in my bedroom wearing earbuds. I eat all my meals alone in my room. Every single noise anyone makes angers me to the point of tears and I’m honestly ready to give up. Not only because of the misophonia, but also because I just found out I have Lyme and I have to try to deal with that too and I’m completely overwhelmed. I’m really really lonely and I feel like I’m going to either explode or kill myself if something doesn’t change soon.

I don’t know if anyone is even interested in reading my long list of complaints, but I’m interested to know how many other people experience severe misophonia as a symptom of Lyme and how common it is.

The hypochondria in me is also kind of freaking out about the effects, both long and short term, of Lyme disease, so I was hoping someone’s would be able to answer some of my questions to get it out of the way.
-I’ve had Lyme for 8 years now and am just starting treatment, what’s the chance of being cured completely and how long might it take?
-What is the chance of Lyme resulting in death? That might sound ridiculous but it actually terrifies me.


#2

Kaelyn, welcome to the Lyme forum. I’m so sorry that you are struggling with so much. It really isn’t hypochondria (which is making mountains out of ant hills): it’s real, what you have, and it is having a major impact on your life. What you have is daunting enough for any adult to cope with, let alone trying to handle it all as a young person.

You’re doing exactly the right thing by reaching out to someone. We do understand here: I’ll bet that there are more than a few people here who have felt really down because they are trying to cope with the impact of Lyme on their lives. I’m hoping that some of them will respond to your post.

But reaching out here isn’t enough for what you’re trying to cope with. Talking to your parents and your doctor how awful you feel is probably the last thing you want to do right now, but they can help get you out of this horrible dark place that you’re in. Please start with your Mom (text her, if that’s what it takes, to get the conversation going) and ask her to help you get the support that you need. If you were in school, I would tell you that you need to share how you are feeling with one of the counsellors there, but you probably can’t do that right now.

I’m glad that you are starting treatment: that means there is a possibility of your starting to feel better. And I’m betting that as you feel better physically, you will start feeling better emotionally as well. It will take a bit of time, but I think you know that already.

Finally, I am going to ask you to promise me two things. I’ve only met you through this community, but I’m guessing that when you were feeling better, you were a pretty good student. You write well, and you seem like a very thoughtful person. I do understand how chronic diseases and pain can totally swallow up your life (I don’t have Lyme, but I have another chronic and painful disease). With treatment and the help of others, though, it almost always gets better. Will you promise me that you’ll start the process of getting better by asking your Mom to get you help? Will you do that?

I also know how alone and desperate you can feel in the middle of the night, or when you’re the only one home. If you look near the top right of the Home screen, you will see a grey tab called “HELP”. If you click on that, you will see a free phone service that can give you some emotional support right away. Here’s one of the pages that I think you should bookmark. And that’s the second thing I’m asking you to promise: will you pick up the phone and call them when you are feeling very alone and desperate?

Kaelyn, I hope that you will reach out and ask for help. You’ve made a great start by coming here, but this is just a start. And please let us know how you are doing.

Seenie from Moderator Support.


#3

Hey Kaeyln, how are you doing today? Just thinking of you and wanting to check in.


#4

Hi Kaeyln,
Thanks for sharing your story. The isolation must be really difficult. I have moderate misophonia. I always
yelling at my husband to turn things down, etc. I do facebook and texts to communicate with my friends…
The good news is that things are getting better. As I kill off the lyme and expecially the parasites, my head is becoming clearer. I am 54, and went 25 years without a diagnosis., and have been able to make good progress with my Rife machine in just 9 months. I still have a long way to go, but I am seeing progress.

The great thing is that there is hope. I have tried several time to (pack it in) over the years. But I am so glad I stuck it out.
If your anything like me, I was terrified at first to even do research. Remember information is extremely powerful, and the more one reads, the less anxious one becomes. There are some basic books to start with through the online book stores. Keep asking questions and reaching how ever you can. Avoid isolation, even if its just a text or e-mail.

Best Wishes
Kestral


#5

Hi! Welcome although I hate everyone meets under these circumstances. Lyme almost destroyed my life. I was an athlete and in the military and when I got reinfected 7 years ago I went down very fast. I have seen people go into remission I unfortunately am far away from that.
Noises bother me and I also get ringing in my ear and ear aches a lot…my doc says it’s Lyme related. My main symptom is chest tightness/anxiety, flu like symptoms, and joint pain. I can totally relate to how isolated you can feel, but just know that we are here to listen! So many of us are going through A lot of the same problems. Keep us updated !


#6

Wishing you the best Kaelyn. You sound as if you do understand what is happening in your body. I am new here and do not know any answers. I just want to reach out to you and hope you continue to reach out and learn more about this disease. What I do think I have learned is that it is a very tricky bacteria and affects people in many different ways. I hope you hang in there. Wishing you wellness. Diane