posted
Hi, just wanted to post this in case it helps someone.
I was diagnosed around 10 years ago, llmd thinks I was first bitten about 25 years ago.
About 3 yrs. ago it started that when I would exercise to exertion I would almost pass out (I would get very lightheaded, everything would go black). I thought I was just out of shape, which made me exercise more, and the episodes increased.
Last fall I was able to connect it to my heart rate. When my heart would get to around 150, I would almost pass out. I was also having lots of palpitations and skipped beats.
I finally saw a cardiologist, they did a stress test, during the test my heart rate jumped from 148 to 240 instantly. They diagnosed me with SVT, supraventricular tachycardia, basically an electrical problem in my heart, a common problem but not so common at my age (48). They said it could be easily fixed.
Of course as soon as I got home I checked to see if there was a lyme link. I read somewhere that it's the number one heart-related complication among lyme patients (I'm sorry, I can't cite it because I don't remember where I read it). The next day when I had a followup with the cardiologist, I asked whether it could be related to lyme. He said no, it had nothing to do with lyme.
When they did the catheterization to perform an ablation (go up through the groin into the heart and zap the source of the misfirings with a laser), they saw that I also had atrial fibrillation (another electrical problem) on the other side of my heart. Still an easy fix, but somewhat more risky. The ablation for both the SVT and the AF was 100% successful.
When this first started 3 years ago, it was happening only when I exercised. By the time I had the procedure, I was having hours-long daily episodes of palpitations and a resting heart rate of 120 even with lots of skipped beats, along with shortness of breath. I was restricted from exercise, but by then even stress would cause my heart to go haywire and I would almost pass out.
The ablation was in March, I've had no problems with my heart since then. I resumed exercise after a week and I've been fine.
At a followup visit, the nurse asked me why I had this problem at such a young age (at 48, I appreciated that!). I said I didn't know, but I had lyme disease. She said, "Oh, that explains it!"
I just wanted to share my experience in case anyone else out there is going through something similar. I believe there's a connection, especially since years ago I had a mitral valve prolapse, my llmd changed my antibiotic, and it cleared up. No non-literate doctor would have made that connection!
Posts: 37 | From PA | Registered: Oct 2003
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
I was diagnosed with SVT when I was pregnant. It resolved after my son was born. (I had Lyme at the time but didn't know it.)
However, I now have POTS. The symptoms for me are very similar to that of SVT. MISERY.
posted
I'm not familiar with POTS. I see that they believe it's most likely a form of dysautonomia, and other syndromes thought to be due to dysautonomia are fibromyalgia, CFS, and irritable bowel syndrome. And how the onset of POTS is often sudden and follows an infectious illness or exposure to toxins.
Gee, imagine that.
I hope you're able to get some relief soon!
Posts: 37 | From PA | Registered: Oct 2003
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Yep, when I was well I didn't have POTS, nor SVT.
posted
Wow, after my experience, I thought cardiologists knew nothing. I dealt with a total of 4 between the stress test and the ablation, and not one of them "bit" when I mentioned lyme.
I'm glad to know that they're not all ignorant of the connection.
Hope your A-fib continues to behave!
Posts: 37 | From PA | Registered: Oct 2003
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posted
I was scheduled for a tilt table test because of POTS. I had asked my cardiologist if this could be due to lyme.
At the time I hadn't been diagnosed. My LLMD said it was definitely from the lyme.
When I told my cardiologist he decided to hold off on the test since it was the lyme causing it.
Last night came real close to going to the ER. My blood pressure was 84/62 and my heart rate was 145 and I felt like I was dying.
My normal hr is alway s btw 120-135. I called him today to tell him it was getting bad and he pretty much just told me to go to the ER of I thought I needed to, but there really isn't much they can do is there?
Posts: 67 | From Delaware | Registered: Jun 2013
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posted
I was scheduled for a tilt table test because of POTS. I had asked my cardiologist if this could be due to lyme.
At the time I hadn't been diagnosed. My LLMD said it was definitely from the lyme.
When I told my cardiologist he decided to hold off on the test since it was the lyme causing it.
Last night came real close to going to the ER. My blood pressure was 84/62 and my heart rate was 145 and I felt like I was dying.
My normal hr is alway s btw 120-135. I called him today to tell him it was getting bad and he pretty much just told me to go to the ER of I thought I needed to, but there really isn't much they can do is there?
Posts: 67 | From Delaware | Registered: Jun 2013
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posted
I was scheduled for a tilt table test because of POTS. I had asked my cardiologist if this could be due to lyme.
At the time I hadn't been diagnosed. My LLMD said it was definitely from the lyme.
When I told my cardiologist he decided to hold off on the test since it was the lyme causing it.
Last night came real close to going to the ER. My blood pressure was 84/62 and my heart rate was 145 and I felt like I was dying.
My normal hr is alway s btw 120-135. I called him today to tell him it was getting bad and he pretty much just told me to go to the ER of I thought I needed to, but there really isn't much they can do is there?
Posts: 67 | From Delaware | Registered: Jun 2013
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
jnathan: why would he hold off on the tilt table if Lyme is causing it?
I was absolutely miserable with the POTS symptoms. I have been treating Lyme for a year and a half and I am still not in remission. It's stupid of Drs to wait til the underlying cause is cured to give you some symptomatic relief.
Plus who is to say Lyme is causing it. Yes, it's likely, but people without Lyme can have ANS dysfunction too.
posted
He didnt explain his reasoning. I talked to one of the nurses. He said it was the lyme doing it and he was going to wait to see if treatment helped.
I asked her at what point i should go to er and she said, well if your dizzy enough that you might pass out.
If I did I'd be there everyday! I don't get doctors.
It was pretty bad last night, but I have to be pretty close to death to go there, I was not treated the best when I kept going in for symptoms of lume before I was diagnosed
Posts: 67 | From Delaware | Registered: Jun 2013
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posted
I read that if you plunge your face into a bowl of very cold water (ice water) that it is an effective method of "shocking" your heart back to a normal rate. That advice abounds on the internet, if you google it you will find it.
I never tried it myself. Thought about it, but never tried it.
But that was for SVT and A-fib, I don't know whether that advice is applicable to POTS.
I was told that what I was going through was not dangerous, the worst thing that would happen is that I would pass out and then my heart rate would slow down.
Not very reassuring.
But then I read that a prolonged elevated heart rate could cause stroke.
Okaaayyyyy....which one is it, not dangerous or stroke?
I was given the option of taking medication to solve the problem, but I didn't want to be on heart meds for the rest of my life. In my case, the ablation was worth it, it's over.
Nothing like feeling like you're dying and believing there's nothing anyone can/will do.
If it's lyme, then treatment could take a long time to improve your situation. If I was doing that poorly I would tell the cardiologist I don't want to wait that long and to please do the test, perhaps get symptomatic relief as lax mom said, while waiting to get better with lyme treatment.
I hope you get help soon.
Posts: 37 | From PA | Registered: Oct 2003
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