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Posted 10/20/2014 3:22 AM (GMT 0)
hi I have been having these weird throbbing in my chest, heart pounding, feels like burning at times, and like adrenaline is coursing thru my body. they come and go but are worse when I lay down at home on the couch and in bed. I don't notice them while I am up doing things except I get so tired. and when I go to get on my horse, then sit down on the saddle, my heart goes to pounding and I have to sit there for a few minutes and take deep breathes. it scares me. sometimes I cry it is so painful at night when I try to sleep.

I had a episode last month where I was out in the heat with my horse. I could not hold her and fell down then I felt so hot, like I was going to pass out, then I could hardly get up and when I went and looked in the mirror my face was beet red with white splotches all over and I had to lay down in an air conditioned room to get to feeling better.

I have similar episodes like this over the years. can anyone tell me if I could have dysautonomia? I have been told I have had chronic fatigue syndrome, fibromyalgia, cavitations in my facial bone, depression, bipolar, and now I have been told I have lyme by 3 llmd but none of the neurologist, infectious disease pulmonalogist, medical doctors i see thing I have lyme. I had a MRI of my head and neck that was normal except I have DJD in my neck and back.
Posted 10/20/2014 2:38 PM (GMT 0)
It doesn't matter what the other doctors are saying, they are uneducated and don't understand. Are you in treatment?

This link will take you to a bunch of articles on this and other similar subjects about Lyme. I'm sure you will find it interesting to say the least!
www.lymeinfo.net/autonomic.html
Posted 10/20/2014 2:45 PM (GMT 0)
Hi Traveler,

I have a question for you...in your signature it says healed from the tick borne infections...how do you know you are healed and that it won't come back anymore? I watched Under Our Skin last night and am so disheartened by that movie and have so many questions now!
Posted 10/20/2014 5:06 PM (GMT 0)
Hi Mystery1,

I have had all of the same symptoms as you over the last 15 years. I've had an MRI, EKG, suggestions that it is chronic fatigue, depression, etc. I knew in my heart that none of this was right, and was just FINALLY diagnosed with a positive Lyme test last week--both by a second neuorologist who said I didn't have it but couldn't argue with the Stony Brook lab results, and then by an LLMD/infectious disease specialist. ALL the other doctors I've seen over the years have missed the Lyme and diagnosed other 'problems' that were really just symptoms of the Lyme. I'm now learning that this is a familiar story to so many with Lyme.

Anyway, I also have the symptoms of dysautonomia, specifically POTS, which it sounds like you could possibly have. It's important to note that POTS is a "syndrome" of multiple symptoms that occur together but POTS is not a disease in and of itself. It is a group of symptoms indicating another underlying problem. Lyme is one of these common underlying reasons that one may experience dysautonomia. Trust the 3 LLMDs and consider getting another test, possibly through Igenex since this is the lab that seems to have the most reliable results. Good luck, and hope you start to feel better soon!

Post Edited (mauihawaii) : 10/20/2014 11:10:03 AM (GMT-6)

Posted 10/20/2014 6:25 PM (GMT 0)
thank you everyone
Posted 10/20/2014 6:45 PM (GMT 0)
I feel like im burning alot in my chest too. Always wondered what it was...
Posted 10/20/2014 6:47 PM (GMT 0)
there is a dystonomia center at vanderbilt 2 hours away. I have called my md and I am going to get a referral. it takes 6 months to get in. they have people coming from all over the world.
Posted 10/24/2014 5:58 PM (GMT 0)

leapyear said...
Hi Traveler,

I have a question for you...in your signature it says healed from the tick borne infections...how do you know you are healed and that it won't come back anymore? I watched Under Our Skin last night and am so disheartened by that movie and have so many questions now!

I'm so sorry that it's taken me this long to see this post!!

Dr. Horowitz says that if you can keep symptom free for either 2 o 3 years (sorry, I forgot which it is!), you can generally stay healthy from then on if you can avoid stress and keep your immune system up.

I made it 3 yrs and 5 months before getting reinfected. The reason I believe it's a reinfection instead of a relapse (I've been asked this a lot), is because of how I reacted to the tick bite. It stayed raised, very angry and incredibly itchy for 3 weeks. This is not normal for me at all - bites may itch for as long as a week with me, but not usually any longer than that, and they certainly don't stay raised and angry that long.

It's all very confusing because we just don't have enough research that has been done as of yet - but we will get there one day!!
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