Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
So I have my pacemaker date and it's in less than two weeks. I found out last week.
Last week was VERY bad. I had restarted Doxy about a month ago. The first antibiotic I'd taken in over a year. I previously did aggressive orals for Lyme, co-infections and yeast for 2 full years. Never had ANY improvement, could not afford IV's, lost my first LLMD, so ended up on herbs with a great 2nd LLND.
My herxes always include severe depression and anxiety. Even doxy alone with my long-term herbs provoked this again. Despite being on doxy long-term in the past with many other simultaneous abx! I was so depressed that I literally didn't even want to try ANYTHING anymore. Including my upcoming pacemaker because I felt like it's just artificially keeping me alive to suffer from all my other debilitating unrelenting symptoms.
So in 3 years I have never improved. My heart has been really flipping out between rates in the 30's and 200. I also have SVT, PVC's, non-stop episodic severe hypotension and fainting and my heart stopped once during an episode. Luckily I have an implanted heart monitor to document most of this. Unfortunately the heart and BP drugs, salt, fluids, compression, etc. have absolutely no effect on me either. I faint up to 10 times per day with no way to stop it other than lying down which is not always possible.
I have no other positive indicators of any other conditions and I've been tested for EVERYTHING. Metals, mold, thyroid, adrenals, MS, RA, lupus, diabetes insipidous, etc.
So the pacemaker is set, and I'm actually in a normal frame of mind now and excited to not have my slow heart rate and headaches anymore, I also won't faint and drop to the ground with no warning. But after the pacemaker I can still faint 10x per day from my BP since it won't solve that. I'll just always have warning.........
I'm angry though. I'm in my 20's. I need the pacemaker now and I'm glad to have the ability to get one which is specific to my type of fainting, but it didn't have to get to this. I went in to a doctor immediately with a known tick bite, fever and rash. When doxy didn't work they should have put me on IV abx. It should have been covered by insurance then. Instead I will now be relying on a pacemaker to fix 1/10 of my screwed up nervous system. It's not right. My life is ruined. I have many other symptoms that prohibit me from functioning like a normal person. Why is it okay for doctors to neglect to treat patients in the early stages and commit them to a life like this? It's so upsetting!!!!
posted
Doxy has done nothing for me. Ever. Neither did Zithromax.
Oral meds are not in the same ballpark as IV meds when it comes to lyme.
I think it is criminal that we cannot get IV meds approved or covered, yet they will give you a pacemaker? Is it for an underlying problem or caused by lyme?
-------------------- Sick since 2000 Bulls eye 2005 Dx Babesia, Lyme 2014 Posts: 247 | From New Hampshire | Registered: Aug 2014
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Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
It's caused by Lyme, but at this point it's needed. The cardiologist would say it's unrelated. He calls it autnomic dysfunction but agrees that Lyme and also viral infections can trigger it.
My heart is stopping and going between 30 and 200 whenever it wants. I'm fainting constantly and the Lyme treatment that I can afford does not appear strong enough to have any effect on it.
I feel for you. Please hang in there. Get your pacemaker...that is one step in the right direction. Then you will take another step in the right direction, and another.
Sometimes it seems like getting better is an impossible goal, but with Lyme and co., getting better can and does happen. Don`t give up. You can get better. It´s not easy, but it can happen. Take care.
Posts: 172 | From ohio | Registered: Feb 2010
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posted
Summer.. I am PRAYING that this pacemaker changes your life. It COULD happen.
Yes, I agree that this is unfair and is CRIMINAL that Lyme patients are put in this position, but recovery is STILL possible.
Hang in there!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
Thank you. I am grateful for the pacemaker and also to have found a cardiologist that actually took me seriously. He didn't start out that way, but for the first time ever....I was able to get a mainstream MD on my side trying to help.
It took a LOT of effort since I'm in a low-risk demographic (young, female, athletic/underweight, non-smoker). He at first thought everything was just PVC's and he could easily stop my fainting with meds. I literally took photos of my BP monitor daily (dated and timed) and then when my heart rate started going into the 30's and he told me it was PVC's falsely lowering my rate I was VERY angry because that was NOT what I was feeling.
So he implanted the monitor, I ended up being correct (thank god) and since then he has been completely different with me. Trying meds in high doses, giving me some control over dosing, offering the pacemaker and jumping to implant one that will be completely experimental for him, etc. He knows I don't like being out of control of my body/mind and am uncomfortable being sedated so he has agreed to do it with just a local anesthetic at my request and if I change my mind at any time he can sedate me then. Every time I've had a question or concern he has responded to me himself the same day.
So I'm VERY lucky to have a decent doctor to do this surgery. I've had a LOT of bad experiences with other doctors along the way. He doesn't ever discuss Lyme with me and I prefer it like that so that we don't get into arguments over it. For my heart, he's trustworthy and intelligent unlike my first cardiologist who I had absolutely no trust in.
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