Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
Anyone else have heart block late into infection (years in). If so what type and what are mainstream doctors doing about it for you?
I recently had right bundle branch block show up on an EKG which might explain my sudden bradycardia. Normally my heart problem is tachy. I also have almost no rise in BP during exercise as demonstrated on a stress test.
I am not new to Lyme. Treated aggressively with abx for several years. Now on herbs. Heart block just showed up recently. No new infection. This is from the pre-existing one.
joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
Up.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
| IP: Logged |
posted
Thank goodness they finally found the problem!!!
I would think it could show up at any time, but I do not have any direct evidence of that. Did you try Pub Med for articles on that?
Any chance you can go on IV meds for the Lyme?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
No chance for IV meds. My block is supposedly "harmless" so I'm getting no treatment from mainstream doctors except I have an implanted monitor. It's right bundle branch/left superior.
What bothers me is that the first time a cardiologist saw this on an EKG was also the first time I started having problems with LOW heart rate (off meds) which is a major sign of heart block. Normally I have problems with my HR getting too high.
He didn't take me seriously whatsoever until I sent him photos of several BP and HR monitors showing HR of 39 awake (not resting). He never even mentioned the heart block to me. I saw it on my chart later.
He knew I was concerned about heart block/Lyme all along so I have no idea why he wouldn't discuss it or even tell me ANYTHING about it. The other abnormality that day was that my BP wouldn't rise above normal during the stress test. My highest reading was 116/66 after I stopped running and I was running pretty hard (17.2 METS 190 max HR). It even dropped at one point while still walking.
They don't treat this type of block apparently. It's supposed to cause no symptoms yet my HR is still dropping substantially lower than normal (currently in the 40's transiently). I also don't feel well. My BP is dropping a lot (he claims from autonomic neuropathy). I get close to fainting so many times a day.
I want mainstream help and still can't get any even for a condition that I can treat as completely isolated from Lyme.
I am treating Lyme and have a good Lyme doctor but unfortunately I don't respond well to treatment. It keeps me stagnant and I get slowly worse as evident by the development of heart block 3 years into infection. When I do nothing I get rapidly worse and cannot function at all. I'm on herbs right now but did heavy abx for several years addressing Lyme and all co-infections.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Have you been tested for CCSVI ?
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
| IP: Logged |
momintexas
Frequent Contributor (1K+ posts)
Member # 23391
posted
Please get another opinion. BBB can be a sign of a possible impending MI. I'm not trying to scare you, but this definitely needs to be evaluated.
BBB are treated with surgery.
Posts: 1408 | From Tx | Registered: Nov 2009
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Hey Summer. Where are you located? I know of a Lyme cardiologist, but don't know if you can get to him.
Posts: 2839 | From California | Registered: Jul 2012
| IP: Logged |
Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
I'm on the east coast and insurance restricts who I can see. Actually........I may lose insurance this week. Trying not to.
I'm scared. I have a severe headache tonight and caught my HR at 38 (flagged it on the monitor). It goes back up (no higher than 52 if I'm lying down) but I feel it and it's very uncomfortable.
I hope that this goes through tonight and they figure it out and help me. I'm afraid my heart is going to stop. The ER didn't do ANYTHING last time except try to contact the EP who didn't respond to them.
posted
But aren't you worse now than when you were in the ER last time?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
No because what happens is the stress of being in the ER raises my HR and then they're like what the heck do you want us to do about a HR of 58?
The ER last time was not disrespectful or anything, they just don't know what to do. Neither does the local cardiologist so they called the EP. He called my house while I was in the ER assuming it was PVC's and told me to reconsider the beta blocker. I had a transcribed message that I read to the ER doctor who did NOT agree and advised me to not take a beta blocker until they make sure that it's not really dropping into the 30's as bradycardia.
Then the ER just did IV magnesium (for the 2nd time that week) and sent me home. So it's a waste of time to go again. Especially now that I have an implanted heart monitor. Although it always likes to skip sending the signal on nights that I need it to.
Normal for me is 80 resting and it should have been about 120 in the ER last month not 58 so I feel like crap when it's this low.
Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
It dropped into the 30's again yesterday. Anyone have any ideas of what I can do to raise it myself since the cardiologist does nothing? Already tried caffeine, ginseng, moving around, etc.
It just drops in episodes randomly. Yesterday it didn't get above 50 all day.
posted
So what's up with the "monitor?" Is your Dr's office receiving info from your heart each day? It is being recorded?
If not, give him a call again.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
It will automatically trigger under 30 BPM. Otherwise I have to wait for them to scan it in mid-August. That's the rules with coverage. They wait until you are at high risk of death from an extremely low HR before helping you.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic