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Ever feel like you are the ONLY one?!

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Posted 5/26/2015 1:48 PM (GMT 0)
Do you ever feel like you have a specific symptom and you are the ONLY one experiencing it? Even when your doctor tells you he's seen it before...you literally feel like the only one and freak yourself out about it?! Grrr....
Posted 5/26/2015 2:09 PM (GMT 0)
What are you experiencing? & Yes, I freak myself out about alot.. Probably too much. #lymeanxiety
Posted 5/26/2015 2:31 PM (GMT 0)
Just specific symptoms that the dr. attributes to Bart. Annoying! Sometimes I don't like to post about specific symptoms on forums because everybody has their own opinion on what it could be, when I really should just be listening to my doctor...ya know?
Posted 5/26/2015 3:16 PM (GMT 0)
Runnergirl: To be honest, if I was still listening to my first LLMD and hadn't payed attention to different things people write about their symptoms on here, I would still be very sick. My first LLMD tested me for Babesia, which I tested negative for. I was having hot flashes, but he attributed those to bart. He was pretty confident that I was just dealing with lyme and bart. Well I decided to do my own research on this site, comparing symptoms to others and determined that I do have babesia. A couple weeks after I started taking babesia herbs, I began to feel exponentially better.

I say all this to tell you that in my experience, many doctors, LLMD's included, are stubborn, Type A, sort of know-it-alls. If I hadn't done my research and been an advocate for my own health, I'd still be chasing my tail with a babesia infection that was the main thing impeding my progress. I've seen 3 LLMD's, all had vastly different viewpoints on basically everything about lyme and co. Just saying, doctors aren't gods, they're humans too. It is true that everyone has their own opinion on what a symptom could be, but doctors opinions will vary as well.
Posted 5/26/2015 3:21 PM (GMT 0)
I'm sorry! :( Dr. H is a great doc, he's got ya! & ya, I understand. Well if you need to email me, I'm all ears & since we have the same doc, it might help :) I hope you feel better. This is such an emotionally and physically draining journey..
Posted 5/26/2015 3:53 PM (GMT 0)
I hear you DazedPete, that is EXACTLY why I left my first LLMD. He was terrible. I now have a doctor who really knows what he is talking about. And, I've had countless people on forums "diagnose" me with things I do not have, which was incredibly stressful and confusing. So all I'm saying is you have to be careful with what you get opinions on.

Thankfully, my LLMD is extremely far from a stubborn, Type A know it all. My first one was, which is why I got the hell away from him. I think we also need to all be aware that while all of our opinions and experiences are great and helpful, NONE of us are doctors, and all of us have different experiences, symptoms, things that work, etc.
Posted 5/26/2015 3:58 PM (GMT 0)
Oh, and yes, hearing others symptoms can be very helpful. It was actually on this forum 2 years ago that I was searching for answers. I was having no luck finding out what was wrong with me with doctor after doctor, test after test.

FINALLY, I found an old member on here, who was talking about her symptoms. Some of her symptoms were INCREDIBLY specific and the same as mine (which I haven't heard about much). So I contacted her and we talked back and forth for a while. It was her story that made me realize I needed to be tested for Lyme and most likely had Bartonella. And...I did! So, that was very helpful.
Posted 5/26/2015 4:36 PM (GMT 0)
Yes, I feel that way about a certain symptom of mine. Others have mentioned having it, but it doesn't seem to be as bad as mine, which worries me....
Posted 5/26/2015 5:42 PM (GMT 0)
Runnergirl82 - I felt that way at the lyme support meeting. Everyone had similar symptoms and I'm sitting there like... uhhh.. my hearts involved and I'm the only one. Yikes. But know that there are people who are genuinely here for you. & yes, I agree we are not doctors by any means lol.

You should try to come to the June meeting. It really helps to be face to face meeting with people who are in the same or similar boat as you. I actually connected with one of the girls I met at the meeting on instagram, completely by accident, so it's a small world! But I met people who see Dr. H and they LOVE him. It made me feel good. Then I met people who see my previous LLMD and they aren't happy which made me feel like I made the right choice running and running fast & far.

Keep your head up, you got this! :)
-Aly
Posted 5/26/2015 7:11 PM (GMT 0)
Agree w/ DazedPete. In fact, if I hadn't found this forum and studied all the contributions made here, descriptions of sx and responses to tx, I would be so far behind and still struggling w/ how to document my sx, describe them and understand what is happening day to day.

p
Posted 1/18/2017 5:09 PM (GMT 0)
Hi RunnerGirl,

I know this post was from a long time ago, but I really hope you see this.

I have exactly the same symptoms as you described in your other post and also feel like I am the only one with different symptoms than everyone else. Please respond to this if you see it, I would love to speak to someone who went through exactly what I am going through now.
Posted 1/18/2017 6:49 PM (GMT 0)
arl1224, do you want to explain your symptoms to us? Maybe someone else can help!
Posted 1/18/2017 9:18 PM (GMT 0)
Lots of strange stuff

Started with pericarditis and red bumps all over my legs in April 2016. Was told by doctors that I had a virus and I should be fine in a month.

Since then I have been belching all day, I have muscle twitches all over, muscle jerks, trouble walking because I feel like the ground is moving and I am tipping, acne breakouts, irregular menstrual cycle, thyroid problems, feel like I am burning up yet have no fever, feel like my blood is popping under my skin all over (very strange), feel like my veins in my hands and feet are moving around.

Lots of crazy stuff, however I am not tired and never felt ill and have no joint pain or muscle pain.

I had lyme 11 years ago and was treated right away with antibiotics.

Tested this year with Igenex and came back indefinite for IGM and no IGG bands.

Have been to lots of doctors with no answers.
Posted 1/19/2017 1:04 AM (GMT 0)
Yes, I also think similar. And I am afraid if that symptom will ever go away.
Posted 1/19/2017 9:03 AM (GMT 0)
Welcome arl ..ind means positive...lyme doesnt go away with little treatment..consider dna connexions test.
Posted 1/19/2017 1:23 PM (GMT 0)
Hi Arl,
As Bluelyme said, an ind on the IgM means that new antibodies are being produced, meaning that your body is fighting the infection - how well it's fighting it is shown by your symptoms. Because you have those symptoms, it's pretty certain that you are either reinfected or have relapsed.

I would encourage you to go back into treatment, get your diet healthy again if needed, and to start detoxing heavily again. You may be dealing with several infections, as your symptoms seem to indicate.

If you need help in locating a LLMD again, please do let us know!
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