I'm in my 3rd week of Ceftin and have had problem with my heart racing and pounding out of my chest for several weeks. Even prior to starting the Ceftin it became a problem.
I saw my primary doctor 2 weeks ago and then again today. He started my on Toprol XL today to slow it down and wants me to have an echocardiogram tomorrow to make sure the Lyme hasn't caused any problems with my heart.
My heart rate actually keeps me up at night and I feel like I'm "flying" during the day, almost a hyper state all over. Anyone have this? It always helps me feel better knowing some of the symptoms I experience are common.
Thanks for any responses!
Kelly
Posts: 64 | From Maryland | Registered: Oct 2006
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posted
One more thing...I made a practice of taking my pulse once a day and recording. If you feel extremely fatigued, please take your pulse. The meds may need to be adjusted because your heart rate is too low.
Good news is - I haven't been on beta blockers for a long time. I think I had to stay on them for 1 1/2 years. Stacey
Posts: 298 | From Maine | Registered: Jan 2004
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Thanks so much for your response. I knew someone would know what I was talking about. That helps a lot!!
Kelly
Posts: 64 | From Maryland | Registered: Oct 2006
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
A racing heart, or tachycardia, was one of my initial lyme symptoms, which put me in the cardiologist's office.
He didn't figure out I had lyme at that time, but now he knows.
For the most part, lying down calms my heart...sometimes the valsalva manuever does. Once, I ended up in the ER (this was my herx from the bicillin shot) with tachycardia that went on for 3 1/2 hours. The ER doc was NOT happy with my "irritable heart."
I have a beta blocker to take as needed, but I'm not on one daily. I've not had to take it yet...I just wait out my tachycardias. They usually resolve in 30 seconds to 15 minutes.
I've had several echos done...my cardilogist is a gem and is following me closely.
My husband recently went in for a routine echo, and was feeling FINE, and learned, to everyone's surprise, that he has cardiomyopathy.
The cardiologist is testing him for lyme, and if there is the slightest suspicion that my husband has it, he will be on antibiotics.
Good luck with your cardiologist.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
What is your heart rate? It would be a good idea to buy one of those blood pressure monitors to keep an eye on that and the heart rate.
I take atenolol for my tachycardia. Hang in there!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
You have my empathy. I have had this problem since 1988, two years after becoming ill. It started after I developed a Mitral Valve Prolapse. Yes, it's a good idea to have an Echo for MVP, since most of us develop one.
It started with an 11 hr. bout of tachycardia. I took beta bockers for 7 yrs. until they stopped working.
Then it became night time panic attacks with extra scary bizarre symptoms added on, like burning red skin and goosebumps and chills,and diarrhea, that lasted about 1 1/2 hrs. each.
Because my cardiologist and other docs I was sent to did not know Lyme causes panic attacks that are much longer than the psych kind, they refused to believe it was panic. (The official psychiatric definition of panic attack is 15 minutes maximum)
I was sent to all kinds of specialists who kept testing me over and over for two rare hormone secreting cancers. If you keep having this, AND it lasts more than 15 minutes, those DO need to be ruled out. They are Pheochromocytoma and Carcinoid Syndrome. A 24 hr. urine collection is the type of test for both of them.
I suffred these attacks, sometimes several times each night, until I was afraid to go to sleep. They also happened in public, in noisy, crowded, too hot or too cold, or exerting environments, for 12 long years, until about 4 yrs. ago, when they suddenly upgraded to include an abnormal rhythm and all the symptoms of a major heart attack.
By this time the cardiac event monitor had been invented, and PSVT was diagnosed immediately, after 12 yrs. of not knowing what the attacks really were. (Paroxysmal SupraVentricular tachycardia) I cannot have the radiofrequency ablation procedure to repair the problem because of other problems I have from Lyme, so I take a lot of medication instead (Verapamil, Clonidine and Xanax).
I have talked with several other Lymies and CFS and FMSers who have this problem (and most likely have Lyme, IMO), but they all had the ablation procedure done to stop it, so I am alone in being stuck with the meds, as far as I know.
This problem has limited my life more than any other. It is the reason why I pray not to wake up in the morning. I must carry a 911 Mobile phone on me at all times, even to walk to the mailbox. I can't drive 99% of the time, can't take a walk around the block, or up even a slight hill. Malls are out, walks in the woods or on the beach are out, noisy restaurants or heavy traffic are out.
I cannot change speeds too fast,ie. stairs are out unless I do warm up exercises before attempting to climb them. Running at all is out. I must avoid anyone or anything that might make me angry and set off an attack. I have become almost totally housebound as a result. I do exercise regularly, but must very slowly increase from stretching to light aerobics,and stop if I start to feel waves of nausea or heart pounding (sign of an impending attack).
Every fall, when the time changes, I start having attacks again and have to raise my meds. (Panic attacks can increase in the winter months). I use a light visor every morning to try to avoid this, but it has not worked.
One of the meds is set at so high a dose now that I can't take any pain meds or I stop breathing, one reason why I can't have the surgery to fix the problem, the other reasons being allergy to any ABX that is prophylactic for MVP during surgery (or that can kill Lyme), and not being able to lay flat due to Lyme arthritis in my spine (the procedure takes 4-6 hours and the patient is awake the whole time).
Once I have an attack, it starts a series of them, since I never seem to come back down to base level ,and I have now had 18 attacks in the past two weeks. It started when daylight savings stopped and then some neighbors backed over our mailbox, the noise causing me to jump up from my chair and run to see what happened, without thinking about how I cannot do that. That was all it took to start the ball rolling, and now I am so medicated, I can barely walk.
Almost every minute, I feel like I am about to go out on stage and speak to a thousand people. The level of adrenaline being pumped out is agonizing. I do not believe I will live much longer, since I cannot isolate myself from all stress that could cause attacks.
The point in all this rambling is: If you are ever tempted to stop treatment because herxing is so hard to bear, let my story be a warning. I can't take ABX due to allergy, and this kind of progression can be one result.
To be fair ,I was also misdiagnosed with FMS for most of this period, and was exercising like crazy, since the docs told me to, using drugs to control my heart while I did so. All those aerobics I did surely made the damage worse, as did the cortisone shots I received into tender points. Aerobics and cortisone are SOP for FMS patients, and a disaster for Lymies.
I hope you will treat this agressively now, including taking Mg citrate several times daily to bowel tolerance, COQ10, L-carnitine, and any other heart supplements that may help you. If you can get Mg by IV or shots, that is even better. Low Mg is intimately related to tachycardia.
May you be blessed with a solution,
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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posted
Man! I can identify with just about everything here.
My LD just resurfaced (relapse, reinfection, take your pick ) and the main tip off was my heart suddenly starting to misbehave. I have MVP that is aggravated by LD and I very painfully found this out years ago when I was first infected.
Needless to say, the panic attacks brought about by that nearly destroyed my life but I made a complete recovery.
At the time I was going through all that, I'd not heard of taking magnesium so my life truly was hell. My LLMD put me on magnesium for my MVP after I started getting asthma attacks from my beta blocker. I've been taking it now for several years -- asthma's gone and had no heart issues.
Until my heart started misbehaving few weeks ago.
Having been on magnesium has made everything much easier to bear. I really can't stress that enough. Yes, my heart still rumbles for now and at times I feel like I'm over-caffeinated but I don't get those horrible adrenaline/panic surges that I did the first time. They're there, but they're miniscule.
Go for the echocardiogram. It's not a bad thing to do to establish some sort of baseline for your heart's behavior.
-------------------- Linda Posts: 749 | From New Hope, PA | Registered: May 2002
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
All I csn say is WOW!
Klutzo, you mentioned pheochromocytoma's and normally I would have had no clue, but during my undiagnosed stage, I had the elevated 24 hour urine tests enough that they sent me for three different scans looking for the pheo's.
They never found it but my blood and urine work kept saying I had one, so I was on that path for quite a while.
I was given all the heart tests, including a heart catherization in the very early stages of my symptoms and was told it was fine.
I was have the blood pressure cuff that does the pulse and had to keep record because they were sure I had the pheo for quite some time.
Oddly, with my "fibromyalgia" protocol of ambiem, klonopin, xanax and flexeril, so much of this settled down.
But then after the steroid injections for "degenereative disc disease", my symptoms went neurological and FINALLY I got my diagnosis with a positive Igenex test.
But I've only been on treatment for three weeks and in herxing I've started having this racing heart going full tilt. I mentioned this at my appointment yesterday and since I'm doing abx and Zhang, my LLMD raised one of the Zhangs.
But last night, I wondered if it made it worse. This is scarey stuff so although I know most of you are having it much worse, I just wanted to say I relate to so many aspects of this.
All of you take care of yourselves and good healings. And Klutzo, thanks for all your support.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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Just a quick update. I not only had an echo, but the cardiologist saw me as well. When she found out I was being treated for Lyme, she said she wanted to do some other tests to be sure I don't have carditis.
She said the probability is low, about 10%, but she doesn't want to take any chances. She said that despite the start of Toprol XL, my heart rate was still high during the echo.
She had her technician put on a 24 hour holter monitor. I had a lot of tachycardia and palpitations while I was wearing it. Cardiologist wants to see me again next week to discuss my results and go to the next step, whatever that may be.
I'm happy my primary doctor sent me to this physician as a precaution. I see my LLMD for the 2nd time next Tuesday, as I complete 4 weeks of Ceftin, and move to the next step. I am showing some improvements with some of my symptoms and feel ready to possibly go back to work next week.
I have filed for short term disability through my job to cover me while I was out the month of November. Has anyone had any difficulty getting short term disability coverage? I don't know why I'm feeling rather anxious about asking my LLMD to fill out the papers next week.
When I started my antibiotics, I felt there was no way I could work, hell I couldn't even get out of bed. My job has been great with understanding all of this. Thanks for any responses!
Kelly
Posts: 64 | From Maryland | Registered: Oct 2006
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) and the main tip off was my heart suddenly starting to misbehave. I have MVP that is aggravated by LD and I very painfully found this out years ago when I was first infected.
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