posted
I have a history of Supraventricular Tachycardia, PVC's, PACS, short run of afib very rarely, since 1995. Usually my heart will pop into a SVT and out of it very quickly, but last night I swallowed some food and suddenly it kicked into that machine gun rhythm and I couldn't get it out. Tried vagal manuevers but nothing worked. Finally after 8 minutes or so (short of breath, pale, etc) I called an ambulance and they decided to give me a shot of Adenosine to bring it down. It was 177 BPM on the monitor and in SVT. Probably higher before they got there.
I saw an EP Dr. at the hospital who specializes in Cryoablation. He talked to me for a long time and I told him I have been having this since 1995 on and off. Never went into permanent rhythm like that before and never needed a shot to bring it down, but I have a long history of this provoked by adrenaline, baths, exercise (sometimes), coffee and alcohol, and sometimes for no reason. He said he has a 95% cure rate with Cryoablation and AV node ablations like this that are relatively simple. Wants to do an EP study. My choices seem to be either a lifetime of meds or ablation, which could be a cure. I tried beta blockers many years ago but they made me tired, cold, and spacey. I have a low resting heart rate.
My question is:
Do Lyme patients overcome arrythmmias like this (AV NODE) once treatment is finished? He said he did not think I had a serious arrhythmmia and it was most likely AV node related. EP Dr. also said this could be the Lyme, but then again it might not be, as he does see it in young patients. I am a 43 yr old male and like to exercise.
How common are these episodes of SVT in Lyme patients and do they get over it after aggressive treatment? I have not done IV.
Most of my Lyme symptoms are gone now, other than the heart symptoms and some twitching. I just tested mildly positive for Babesia, so LLMD wants me to drop the Rifampin (5 months in) and Zithromax and move on to Malarone (4 daily) and Moxatag (750mg 2x daily).
Any advice would be greatly appreciated. These arrythmmias really do ruin my quality of life and I need to address this. Don't want to drop dead!
Posts: 770 | From USA | Registered: Jul 2006
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Babesia can cause a lot of heart problems and issues.
This is an interesting topic though because I have a lot of heart problems myself and I'm only 25 years old. I've had tachycardia (not sure what kind, though I believe they've said it was sinus) since I was 12. I also have lots of palpitations and issues like that and have had that for a long time. Though I've had many heart workups and the doctors say everything is normal.... sure doesn't seem or feel normal!!!!
Scares the crap out of me. Ablation is interesting... though sounds kind of scary. But a cure for these issues would be amazing. I've been on a beta blocker for two and a half years now.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
Once in a while I get tachycardia after taking my meds, and I think it's a heart herx due to my Babesia meds, primarily. Happened last night after I took my night dose of meds, so I took an ativan to help relax me so I could go to sleep.
I was fine this morning.
Posts: 975 | From California | Registered: Apr 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I would first study his work and consult Paul Cheney's office even with just call for their suggested reading on the subject. He's knows a lot about CFS patients with infections and has had his own heart procedures, as well.
His site returned nothing with a search for "Cryoablation" but I'd still at least call his office and talk with someone there. My concern would just to be aware if infection makes a difference in the outcome of this procedure.
He is not a LLMD, to be clear. However, he has done a tremendous amount of study on heart issues of those with chronic stealth infections:
There is also another heart doctor's office I would call: Sinatra.
Stephen or Steven, I think. I'll have to look it up. He is also familiar with infections. He is an author who has at least a familiarity with lyme. He is not a LLMD, though. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Doubt this guy would call the Cheney Clinic. He explained that it could be the infection but also may not be. What matters is that he can pinpoint where the arrythmmia originates from and freeze the tissue. 95% Success rate.
I look at it as better than being on beta blockers and other heart drugs forever. I have no structural and blockage issues.
Posts: 770 | From USA | Registered: Jul 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Well, yes, it sure does sound a lot better than being on drugs. And you are lucky that they've pinpointed the place that needs attention and repair.
I was thinking of calling not to so much to see if this is infection related (that is likely), but to see if certain support measures might help the outcome of the procedure.
Good luck. Hope this works exceedingly well. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Someone mentioned that Taurine and L'Arginine help alot. Also Iodine. Anyone know a good source for these?
Posts: 770 | From USA | Registered: Jul 2006
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Myco - I will probably be in your situation at some point in my life. I doubt the lyme treatment/babs treatment is going to fix my chronic tachycardia (though I can only hope and pray it does). I've had tachycardia since I was 12 and I'm 25 now.
Two and a half years of lyme treatment has not helped with tachycardia or the palpitations... I've also heard from people who were or are in remission who still have tachycardia as a symptom. It's just sad that lyme effects us to such a permanent point. :-(
And let me say again that people with lyme who have no heart involvement really have no idea how extremely lucky they are. I know that sounds awful as lyme alone is horrid, but lyme WITH lyme that caused the heart issues, is even MORE horrid.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
How safe is the procedure?? I may be facing it myself one day. I have tachycardia controlled by a calcium channel blocker and A-fib.
I've been in remission from Lyme for 5 yrs and have been treated for babesia as well. I'm just saying your problem could be related to the babesia.
If the ablation is pretty safe, I'd seriously consider it. Since you're young, you have an even better chance at coming thru OK and having an improved quality of life.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
95% success rate sounds good, but almost too good to me. Apparently Cryoablation is much safer than the other form of ablation and gives the Dr. the ability to really map out the situation and see where the problem is coming from.
I think I am going to talk with a few of his patients who are 2+ years past the procedure to see how they are doing.
Posts: 770 | From USA | Registered: Jul 2006
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Myco - when you talk to some of the patients, will you get back to us or pm me about how well they are doing now after the procedure? I'm really interested in this myself. It might be something to ask my cardiologist about.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
Please do continue to post on this subject. I too have heart related problems with Lyme.
Alot of it seems related to my stomch and belching. I suspect my vagus nerve is all whacked out.
I wonder if an ablation would help if the problem is stemming from the vagus nerve.
I have a tremendous amount of pvs's. Often time relieved to some degree by belching. The problem is i constantly belch so i constantly have pvc's
It's a nightmare. Had a Cardiologist talked to me about ablation and said if the problem area is on the right side(i believe he said right)then the ablation is much easier.
It is more dangerour on the other side b/c you have to pierce the heart to get to the other side.
Ok the word was probable not pierce but some how they had to go to the other side of the heart that made it more dangerous.
He feels my pvc's originate from the right but you never know until you get in there.
He had a women around 39 yrs old who went in for the operation and thought the problem was on the right side but turned out it was on the left.
I think he said the risk outweighs the possible reward for some.
Maybe the cryoablation is more advanced and less room for error.
Good luck Myco
Posts: 137 | From wethersfield ct | Registered: Mar 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Myco,
I know you've seen this, however, others who are reading this thread may find some good links here that, if not directly relate to ablation, might offer help in other ways:
posted
It is interesting that this episode followed swallowing some food.
1) do you have a hiatal hernia? has anyone done an upper GI barium swallow study?
2) I also have heart problems (tachycardia, PVC's) at times, that seem to be related to eating. X-rays showed excess air in my lungs at those times, but I don't believe it. Like cylyme, mine improve after a lot of belching.
I found magical relief by taking Gas-X (simethicone. I carry the chewables around with me. It gets all the air out my chest, presumably from the digestive tract, which seems to work for me.
My daughter and I have had problems due to female hormones,which don't apply here. My daughter was going to have an ablation, for resting heart rate of 140 for a few months, but it mysteriously stopped.
I would like to know more about the vagal nerve connection. Recently, PT for my spine has induced more belching, breathing problems and heart palps/tachycardia. I wonder if the PT is somehow stimulating the nerve.
In the meantime, ctlyme and maybe others, try the Gas-X!
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Pinelady
Frequent Contributor (5K+ posts)
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posted
I wonder if external pacing would by a lot less invasive option while on treatment?
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
I do have a hiatal hernia and I think it is involved but don't know how to solve that problem.
What is PT for the spine? I do find it strange that everytime I lean back in my chair and press on my spine I get irregular beats. Also when I lean back on my pillow in bed. Seems to be involved with my neck and how it is positioned. Really seems vagal.
I suppose I could try gas-x or a proton pump inhibitor but I have been having irregular beats since 95', maybe it really is time to take a look at the heart and see if there is some scar tissue causing the electrical pathways to misfire.
Really am tired of all this!
Posts: 770 | From USA | Registered: Jul 2006
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posted
I didn't see in your post whether you had arrythmias before you contracted Lyme?
If so, I feel you should pursue a permanent solution now.
I almost always got symptoms when laying down in bed. My doctors had no explanation. I have no heart damage or issues.
I had Atrial Flutter and Fibrillation. The doctor said that with some people 'it just happens'. Apparently mine is genetic. My maternal grandmother had it and died from a stroke.
You don't need scars to have arrythmias.
The Flutter was knocked out with 1 ablation. In and out of the hospital in 1 day.
I went through four ablations for Fibrillation. No luck. It is much harder to eliminate with ablation.
I finally cured it with a surgical thorasic 'mini maze' procedure. It is minimally invasive, no chest splitting required. Problem free for almost 2 years.
Both of my doctors told me that SVT is very high success rate for ablations.
Hope this mini history helps.
Posts: 43 | From Sacramento, Ca | Registered: Jul 2009
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posted
It's very difficult to sort out if they came before the Lyme or if they were caused by the Lyme.
In 94 I first noticed skipped beats. Then in 95' I had a run where I had to sit down on the sidewalk it was so bad. Then came panic attacks. I tried antianxiety meds but they didn't prevent the irregular beats.
I then started getting quick jabs of chest pain that were not related to arrhythmia but seemed related to esophageal spasm or hiatal hernia.
In 2002 I finally came down with a flu feeling that never went away, light sensitivity, neuro symptoms, weakness, arthritis, weight loss, etc...
Now in 2009 after Lyme treatment (not done yet, still have to treat babesia) I have no real Lyme symptoms left (some twitching) but the irregular beats seem to have gotten worse and more positional and related to stomach. I am thinking the antibiotics may have made the hiatal hernia and reflux worse.
Not really sure what to do. My main problem seems to be pvcs, pacs, and SVT.
Posts: 770 | From USA | Registered: Jul 2006
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posted
I would definitely see an electrophysiologist (the electrical engineering side of cardiology).
When you had the recent SVT did they do an EKG? If so, get the record sent to the Dr. you go to. And the attending Doctor's report also, if possible.
I wouldn't procrastinate on this. My experience was that these conditions continue to get worse with time. There are some significant risks if you don't treat.
Good luck!
Posts: 43 | From Sacramento, Ca | Registered: Jul 2009
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Myco~ I have about 12 or so tachycardia episodes per year. They started with my illness. A few of them last as long as an hour (or longer). I had one today that lasted 45 minutes.
I see my cardiologist once a year for an EKG and an echo. He says my heart is normal. He does not see me as a candidate for medication (long term) or an ablation. I do carry metroprolol to take as needed. I usually wait out the tachycardia, and only take the medication if it goes on for over an hour. I have taken the drug twice this year so far.
I have to lie down during the episodes (which is inconvenient). But I'd rather wait it out than take medication.
You should see a cardiologist for a thorough examination. 8 minutes of tachycardia is not very long. Of course an EP will recommend an ablation...that is what they do. But if your episodes are infrequent enough or short enough your insurance won't cover it and it is a pricey procedure.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
I would suggest it might be good to wait and see if your upcoming treatment for Babesia might help with your heart problems.
Posts: 78 | From South | Registered: Aug 2008
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posted
I was wondering if Babesia played into this or not. I have asked some very good LLMD's for their advice. In the meantime, I hate beta blockers, but if they continue I suppose it may be better to take them while finishing my Lyme treatment.
Posts: 770 | From USA | Registered: Jul 2006
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Shosty
Unregistered
posted
I just looked on some sites for hiatal hernia, and there is lots of information on the association between hiatal hernia and heart rythm irregularities. I would go to a GI doctor before doing an ablation. Check out GI forums online, rather than cardiac, and there will be others with this, believe me.
But be aware that for some strange reason, it can be hard to find an MD who knows a lot about this association, perhaps because it crosses disciplines.
One online site mentions "stangulation" of the hernia and possible surgery for that (this means the hernia interferes with blood flow, perhaps only when you swallow a lot of food at once, just a guess), to address heart rhythm issues. Try eating small amounts, more frequently, and chewing a lot. Relaxing and even a nice hot bath seem to help me. I visualize food moving down and it actually works. Biofeedback could help, or hypnosis.
The sites also mention vagal nerve issues with hiatal hernias. The vagal nerve has something to do with heart and with digestion, so that could link the two.
Interesting that you experience trouble when there is pressure on the back of your head, or positions of your neck. I have that too! I also get nystagmus (eyes jiggling), dizziness and chills.
Have you had an MRI done of your cervical spine? Any injuries, concussions (which sometimes mean neck effects), accidents, falls?
The vagal nerve is back there too, in the neck. Hmmm.
I think you have a lot of investigating to do (sorry!) before agreeing to an ablation, because your heart may not be the primary problem.
Good luck and sympathies: some of the rest of us are living with this too!
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posted
Yes Shosty, I agree with you. However, I am not sure they can do much with a Hiatal hernia. I tried to get an "adjustment" at a chiropractor but of course it just cost me alot of money and did not work.
I have found GI Dr's to be fairly useless in the past, but may look into that. Seems there are some alternative people out there who understand this.
Neuro did want to do an MRI of my spine because I was having squeezing pain in my head but I had just done 2 MRI's of the brain with contrast and didn't want more contrast again.
Seems like everyone on the heart forums also talks about the connection and my EP cardiologist did acknowledge a vagal connection in most cases but said they have not found a way to fix the vagal nerve yet, even with the new surgery, vagal stimulator that is being used. He said they have tried cutting into the neck etc...but the science is too new.
Seems most people with SVT are cured with an ablation as it is a fairly simple procedure. Lots of young athletes have it done.
Posts: 770 | From USA | Registered: Jul 2006
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Shosty
Unregistered
posted
The thing people were saying on the forum I was looking at is that ablation is not useful at all if the problem is not your heart, but the hernia. The heart problem results from pressure on things (blood vessels) from the hernia itself, and therefore the heart might be fine. This is a little different from the vaso-vagal syndrome.
There is surgery available for a "strangulated" (or "stangluated", not sure if that was a type) hernia.
But there are other measures that, yes, maybe an alternative doc could help with, like changing eating patterns, relaxing etc. that I mentioned.
Totally agree about GI doctors! But it would be worth finding out about the surgical procedure.
Or, you could try the ablation, but if the problem is pressure from the hernia, it won't work!
p.s. for this, an MRI of the cervical spine (neck) might be better than one of the brain- just based on experience..good luck!
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Ablation is interesting... though sounds kind of scary. But a cure for these issues would be amazing. I've been on a beta blocker for two and a half years now.
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