Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
So the beta blocker (Toprol XL) is working to prevent my SVT and PVC's. I rarely get any noticeable skipped beats anymore except when I'm due to take the next dose at night. At that time, I get a VERY strong rebound effect so I try to keep the med with me all the time so I'm never late in taking it.
I'm also on Florinef and my BP has been a lot better but I'm still having issues with fainting/near fainting.
Even though the beta blocker is working for the skipped beats, I'm annoyed and don't want to be on it. It's not "curing" anything and the arrhythmia was never something that I was worried about (it's not a dangerous one). I used to be a runner. I feel like I will never run again while on a beta blocker. It will be 10X harder.
I'm also against being on medications in general and have never taken anything unless I felt like it would work curatively (abx). I feel like I'm going to be stuck on both Toprol and Florinef for life and that REALLY bothers me since they are only covering up symptoms.
I go to a naturopath and have tried alternatives prior to the cardiologist's involvement. However, even the naturopath thinks I should stay on the pharmaceutical medications. I feel like I'm taking steps backwards. I have no LLMD and now I'm resorting to symptomatic medications also instead of dealing purely with the cause like I used to (Lyme).
kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
It sounds like this is a hard adjustment for you. But that medicine is very important as is your heart! I am sorry but I totally disagree with your statement that SVT and PVCs are not life threatening. They very well can be. Please stay on the meds.
I get that it is very hard when it feels like we have no control over our bodies. But the reality is we don't sometimes. There are many times when we can make lifestyle changes and not have to take medicine. But this is not one of them. IMHO.
Posts: 1685 | From Maine | Registered: Jun 2004
| IP: Logged |
posted
Call me naive, but won't you be able to stop the beta-blocker after you are done Lyme treatment?
Posts: 922 | From Philadelphia | Registered: Sep 2012
| IP: Logged |
Boy do I hear you. I, too, am on a beta blocker for similar reasons as yourself. It drives me bonkers that I'll have to be 'tied' to this medicine for a very long time. I have been on the medicine since '11, and never imagined that this would be my fate. But, like you, when the med starts to wear off, boy, doesn't my body rebound in protest! I have even tried to shave off a little bit of the dose (extended release formulations are not a feasible route for my specific symptoms) on different occasions only to be greeted by intense tachycardia and more arrhythmias. Grrrrrrrrrr.
I just wanted you to know that you are not alone in this particular struggle. I, too, was quite an athlete before first falling very ill in '04.
Hopefully things will turn around for the two of us one day...
Told you...
Posts: 315 | From Negative (-) to positive (+) | Registered: Nov 2011
| IP: Logged |
Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
Thanks for the comments. As usual I'm in a bad place lately psychologically. Part of it is probably what I'm taking (A-BART). I'm having a shockingly hard time handling that herb which is strange because I don't normally react to herbs.
I'm sorry Toldyou, that you are also having similar heart issues. Do you have a cardiologist that is understanding of Lyme?
In my current situation, I was treating for Lyme for years aggressively with a LLMD with no improvement. Then I got dropped. Now I have no Lyme-treating doctor and I'm on my own. I have done extensive research and I'm aware of how to formulate herbal and abx protocols for Lyme and co-infections but I'm not optimistic about my ability to make progress either. Doctors haven't been able to help me so how am I supposed to do it myself?
I hate being on the heart meds. My irregular beats weren't dangerous, although I suppose if I would have sought medical treatment while in one of my episodes, they probably would have wanted to convert it or something. I feel like I'm giving in and accepting symptomatic treatments. In a way that's like saying oh well, it's not going to get better so just figure out how to live with it. I've felt like that for a while anyway. Like things aren't going to improve and I just have to manage from now on at this horrible level. Now on a beta blocker I will never be able to run long distance. I've completely lost that............
It sounds like this is a hard adjustment for you. But that medicine is very important as is your heart! I am sorry but I totally disagree with your statement that SVT and PVCs are not life threatening. They very well can be. Please stay on the meds.
I get that it is very hard when it feels like we have no control over our bodies. But the reality is we don't sometimes. There are many times when we can make lifestyle changes and not have to take medicine. But this is not one of them. IMHO.
- Agree
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
I was put on a beta blocker right before the Lyme Dx. It never seemed to really cure anything & I felt odd to Boot. I dropped it & just went with the abx & thyroid med. Yup... I dealt with the skips, took a small "benzo" when things got tough (Ativan, in my case) & the heart finally straightened out a good 4 months into the Lyme treatment.
That said, if you've been on a blocker for a while (& it sounds like you have), it's best to discuss this with your Lyme doc & only wean off it of he/ she thinks it's a workable situation.
The body gets accustomed to the beta blocker & you can get in serious trouble just dropping it, or cutting the dose down too quickly.
Posts: 1233 | From Dover, NH | Registered: Sep 2008
| IP: Logged |
Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
Thanks Kete-Tracker. I don't have a LLMD anymore, so I'm on my own and stuck with "regular" doctors for anything serious for now.
In my situation, I was getting very close to fainting many many times per week so the thought was that the beta blocker would slow my heart, raise my BP and stop the episodes of SVT I was getting. It wasn't working for my BP situation so then I had to add Florinef too. I have only been on them for a few weeks/a month or so.
So far my SVT and PVC's are better, but I'm still fainting which was my main problem. Luckily, I'm not getting any drastic side effects other than a strong rebound palpitations. I'm already so tired and spacey from Lyme that I wouldn't even be able to top that. I had a few nightmares in the beginning but that has stopped also. I'm very out of breath at night and while exercising since my HR is now running in the 50's. I won't be able to run long-distance ever if the shortness of breath continues.
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!
![[Frown]](frown.gif)
Printer-friendly view of this topic