Lyme and heart problems.... (any use testing?)

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Lyme_CJ
Regular Member


Date Joined Apr 2015
Total Posts : 77
   Posted 1/8/2018 4:09 PM (GMT -6)   
What's your experience with Lyme and coinfections and heart trouble? I know there is such a thing as Lyme carditis. But honestly, Lyme can affect everything, and I'm enough used to my sx that I don't think much of them....

Prior to being my diagnosed as probable Lyme, I went through the usual battery of tests based on symptoms. Some of those sx included some chest pain, shortness of breath, etc. - not very severe, or spreading, etc - mostly along with exercise. So of course I had the heart workup also (ekg, treadmill, holter, echo), but they all came back pretty clean.

I'm now in a rather low spot physically for a few months, and had some difficulty shoveling snow. More palpitations, pain, short breath, etc.... more than usual (but that's like all my sx recently). Other vigorous exercise does it too - sometimes.

Between that and some other issues, I almost went to urgent care / emergency Christmas Eve and Christmas day....... Felt better enough that I didn't, but did get in to the dr's office that week and saw a new PA.

New PA quite naturally wanted to send me to emergency, at least to get the testing done (since I was stable at the time of the visit), and that more swiftly than otherwise. Talked her out of it (again, I'm used to this, and I wasn't having the pain at the time) but did go for an EKG. It was normal, but she and my usual doc still want me to do a 48-hour holter monitor......

I kind of think it'd be a waste of good time and money, knowing my body, and esp given the previous clean bill of heart health. And good time and money are pretty short around my house these days.....

I guess I'm writing mostly to get the thoughts out of my head and talk to someone(s) who will understand. But certainly share your Lyme/cardio experiences or if you have any advice. I'm in my early 30s, btw, no major family history.

Thanks for listening!

JustPiccd
Regular Member


Date Joined Dec 2017
Total Posts : 84
   Posted 1/8/2018 4:27 PM (GMT -6)   
Given that Lyme, babesia, and bartonella all can infect the heart and cause different problems -- all potentially deadly -- I don't know that a 48-hour Holter would ever be bad money spent, but then, when money is tight, money is tight. Keep in mind when people w/ Lyme and co's die of heart problems, it can be sudden and often in the young and healthy. There was a study that came out a few yrs ago about Lyme heart deaths, just a few cases but from what I remember, they were all basically young, healthy, unexpected. I'm not saying that to scare you, just saying, there are valid reasons to be concerned and get it checked out.

They do make hand-held EKGs that can read into spart phones or apps that would be cheaper than a test, or a good supplement to testing.

That said, a lot of the tests are unreliable, and need to catch something "in the moment." I was told a 30 day event monitor was the best for catching Lyme cardiac issues in particular (i.e. an arrythmia) just because it's sort of like catching a seizure or something, it's better if you can do the test at the moment you're having symptoms. But again, my personal opinion would be it's nothing to mess around with, if you can afford the testing somehow, I'd say better to know than not know.

I take Vital Diagnostics Heart Calm (supplement) as an extra preventative for palps/arrythmia. In theory, it has a good collection of nutrients in it, though I can't really say for sure it helps/works.

Lyme_CJ
Regular Member


Date Joined Apr 2015
Total Posts : 77
   Posted 1/8/2018 4:42 PM (GMT -6)   
Thanks JustPiccd. Definitely agree it's not to be taken lightly. I hadn't realized about Lyme heart deaths being a big thing. Do you have any links / ideas when or where about that study?

I have a friend who has a history of heart problems - older than me but relatively young (I don't think he's even 50). He had a pacemaker put in a few years ago and that helped, but he's still in rough shape. I talked to him recently and we both think he probably has Lyme also, and he thinks the cardio issues may be from it.

I've noticed my heart races and pounds (at least relatively) when I wake up from a nap. As I begin to realize I'm waking up, just about the instant I open my eyes or stir, I can feel it speed up. Not really when waking up from a night's sleep. Is that weird? What could it mean I wonder....

Then again, my resting heart rate is low (50s), my pressure is fairly low (110 / 60 ish), and my cholesterol is abnormally low....and they all have been that way all my adult life, before Lyme symptoms really came around.

JustPiccd
Regular Member


Date Joined Dec 2017
Total Posts : 84
   Posted 1/8/2018 6:13 PM (GMT -6)   
I think there are a *lot* of weird heart things that happen w/ Lyme that are not going to kill you but are just bizarre, but it's just that it's good to know for sure either way. There are also autonomic manifestations, in other words, the nervous system impacting the heart. Or something like adrenal issues could cause a racing heartbeat. So it's hard to tell sometimes, just really good to figure out.

This is the study I was thinking about: https://www.bostonglobe.com/lifestyle/health-wellness/2013/12/13/three-deaths-reported-from-heart-inflammation-caused-lyme-disease/tA55TpWGXEjFKqnev6bB8N/story.html

But there are others out there. . .

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 5083
   Posted 1/8/2018 9:24 PM (GMT -6)   
Its not like you have a spare heart. You dont know if the issues are from lyme or other things- I would say testing is not a waist of time then.

Due to being over 45 at the time- I tested with what insurance covered and felt better after-knowing. Did not have the home /personal device though - sounds cool.

I did get some type of heart video- I got to see it, was good to know all was working well, vs several weird EKG's that led to it.

After a while- No more heart flutters or falling over in a dizzy spell.
Had initial lyme symptoms late 80's, then again w/with bullseye early 90's. Ended ABX for Lyme in 2015. Rebuilding / repairing / fine tuning since then; member "10 Percenters Lyme Club". What an adventure this has been. Hashimotos adds to the enjoyment.

Wisco woman
Regular Member


Date Joined Oct 2017
Total Posts : 67
   Posted 1/11/2018 10:11 PM (GMT -6)   
Lyme CJ I know exactly what you are talking about with the waking up from a nap and your heart racing. It use to happen to me waking up in the morning as well but that has calmed down now. If I take a little half hour nap though my heart will race the instant I open my eyes like you said; the moment I realise I am awake. It's crazy and it sounds weird but it happens. I am 28 and it's really scary to think about my heart possibly being screwed up forever. I use to be super active-ran every day. Now I couldn't run a simple mile. I did an EKG a 48 hour monitor and and 30 day monitor. My doctor told me they really didn't see anything out of the ordinary yet I was feeling things all the time. For that reason I feel the tests are a waste of money. I don't understand how I can feel something so clearly and yet test after test shows nothing.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33837
   Posted 1/11/2018 10:43 PM (GMT -6)   
I also had that - heart racing.

For several months it would be a few times a night...I'd wake up in a panic, gasping for air, heart racing and anxiety - plus sweating.


Then it got better to where it would be only in the morning waking up and no more gasping for air, just heart racing, and anxiety with minor sweating.

Now, most mornings it's not there...(thank goodness)

What a way to start the day...right? Talk about starting off on the wrong foot.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

OriolCarol
Veteran Member


Date Joined Dec 2017
Total Posts : 727
   Posted 1/12/2018 7:19 AM (GMT -6)   
I have a lot of ectopic beats, supraventriculares and ventricular, and short runs of non substained ventricular tachycardia... I'm not sure if it's caused by lyme, but it's disgusting....

Lyme_CJ
Regular Member


Date Joined Apr 2015
Total Posts : 77
   Posted 1/12/2018 10:05 PM (GMT -6)   
Thanks everyone for the comments. I went ahead with the 48-hour monitor. Some cardiac-like symptoms occurred during it, but not to the extent of what they were a few weeks ago. Of course, after 20 minutes of snow/ice shoveling one day and 10-15 the next day (per doctor's orders).....after the test ended, I'm pretty well wiped out.

I get you, Wisco....I'm concerned that despite my symptoms, nothing will show up. But I suppose it's better safe than sorry....also glad they did a 48-hour this time. Of course I can do OK for a day (what with the natural response to feeling awful......resting up; then I feel better and can do OK for a bit). Last time, I was not this bad, and it was only a 24-hour test; LTD insurance saw it and it looked like (paraphrased) "well, he rode his bike, he must not be disabled"....can't really blame them, based on the data in front of them. But it didn't reflect reality very well.

Anyway, will keep you posted on the results....maybe late next week.

My other thought in this whole thing is - and *so what* if they find something on the holter / EKG? I have Lyme disease, it can affect the heart, I already knew that. If there is some heart problem that this proves to mainstream medicine - does it do me any good? Can they do anything about it?

Wisco woman
Regular Member


Date Joined Oct 2017
Total Posts : 67
   Posted 1/13/2018 12:07 AM (GMT -6)   
I know what you mean. If they do see somthing on the test that looks abnormal they will try to say what caused it. And if the doctors can't figure it out they just say they don't know. Not one of my basic doctors will admit it was from lyme. I had a cardiologist straight out tell me that "at this clinic we don't believe in chronic lyme"

Lyme_CJ
Regular Member


Date Joined Apr 2015
Total Posts : 77
   Posted 1/16/2018 4:04 PM (GMT -6)   
So an update - I've been feeling worse for the few days after the test - as expected for that much exercise (not much really, but for me at present it was). Then again, poor sleep hasn't helped either...hopefully that will improve now that I got a new bed.

Wisco - if a doc said that to me, I'd be tempted to reply with something like, "That's nice. I don't believe in paying doctors that don't help me."

Possibly followed by something like, "Just because you don't believe in something, that doesn't make it not exist..."

Try it sometime and let us know how it goes ;-) .

Psilociraptor
Veteran Member


Date Joined Jul 2016
Total Posts : 1351
   Posted 1/16/2018 4:25 PM (GMT -6)   
I went through extensive cardiac workups. Multiple echos, MRI's, stress tests, etc. Nothing but a right bundle branch block which has since cleared up with treatment (or time, not sure). Thing is, those tests are useless unless you have gross abnormalities. But some low grade inflammation... at least it didn't show anything for me. I know it's heart related because of the RBBB and i've since developed rhythm disturbances.

Lyme_CJ
Regular Member


Date Joined Apr 2015
Total Posts : 77
   Posted 1/26/2018 8:16 PM (GMT -6)   
The Holter came back pretty clean, as expected. Some "PVCs", premature ventricular contractions, which the PA didn't seem to think were too serious. And the rate was still low....all the way down to 36 at 6 am one morning (pretty sure I was asleep). about what it's been overnight on other tests, I think once it may have been all the way to 32.

Psilo, I'm thinking you're right about these not being much use without major problems....just like most other mainstream tests. I visited an endo once, she said I didn't have any endo problems - by the standard criteria, I suppose, since it seems you have to have almost no adrenal function at all to be dx'd.

Anyhoo, they are a bit concerned about that low rate, maybe I'd need a pacemaker (!!!). They want me to get a treadmill stress test and an echo....sigh. I'm trying to work my way through the standard medical pricing shenanigans now....don't get me started on that.

I'm going to chat with my friend with dx'd heart issues.....they gave him a pacemaker and it kind of helped.

Wisco woman
Regular Member


Date Joined Oct 2017
Total Posts : 67
   Posted 1/26/2018 10:48 PM (GMT -6)   
Even though they can't see it on their tests you know it's there. The good news is at least the lyme is t causing such bad issues that it's causing seruoys damage. That's how I try to think of it. My is finally acting decent this last week and a half. I actually had a few days that I didn't think about my heart. That's hasn't happened in over a year. The heart symptoms are horrivek no doubt but hopefully yours continue to fade with treatment

Lyme_CJ
Regular Member


Date Joined Apr 2015
Total Posts : 77
   Posted 4/23/2018 10:28 PM (GMT -6)   
Wisco - I like your thinking about "at least it's not causing major heart problems".

Interesting twist to this story lately....

I hadn't ever bothered with the follow-up tests they recommended, both for financial reasons and since I wasn't convinced it would help. A couple of weeks ago, the PA called and asked about it, reiterated how important they thought it was. So I told her I would plan on going in.....hadn't gotten around to it yet though.

Now I got a letter talking about "not being compliant" and "jeopardizing the patient-provider relationship"....and I "may be dismissed as a patient" if I don't become compliant. Sigh....

I suppose it's understandable in our sue-happy world, they're probably just trying to make it clear they don't want to be responsible for my death, etc. A bit of a sad commentary. It is nice they care, though.

So I guess I'l get that echo and stress test after all......

Lyme_CJ
Regular Member


Date Joined Apr 2015
Total Posts : 77
   Posted 5/17/2018 4:41 AM (GMT 0)   
Aaand another update, went and had the echo and treadmill test along with visiting with the cardiologist.

Initial results all came back "normal", per his first look over things and whatever they sent to my regular doc. I have a follow-up appointment next week at the cardio, to go over results. Which I may skip if all they're going to do is shrug and tell me these tests looked OK......

mpost
Veteran Member


Date Joined Feb 2015
Total Posts : 1527
   Posted 5/17/2018 12:42 AM (GMT -6)   
lyme and heart are sometimes difficult to diagnose. watch this, he ended up losing his heart after many visits and heart tests

/www.youtube.com/watch?v=Ja9iflckw-Y

i dont want to freak u out, ive had many heart issues and i have none right now, so the vast majority of time it's not damaging your heart that much.

But it does happen and it can be deadly.

Dahlias
Veteran Member


Date Joined Jun 2017
Total Posts : 518
   Posted 5/17/2018 12:46 AM (GMT -6)   
Thanks for updating! That letter must have been a bit of a shock. I'm glad the tests are looking pretty normal.
"This too shall pass. It might pass like a kidney stone, but it will pass."

Lyme, babesia, mycoplasma pneumonia. Diagnosed May 2017. Neuro symptoms began September 2017. Treating 11 months so far.
New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, August 16, 2018 7:38 AM (GMT -6)
There are a total of 2,993,213 posts in 328,025 threads.
View Active Threads


Who's Online
This forum has 161222 registered members. Please welcome our newest member, laozishidi.
282 Guest(s), 6 Registered Member(s) are currently online.  Details
sebreg, sierraDon, ks1905, Mamatomypeas, Going for brachy, UCmee