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Lyme carditis and ST abnormalities

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Posted 5/24/2018 11:09 AM (GMT 0)
Hello again! I didn't find a recent thread about this, please let me know if I missed it.
I have finally seen a cardiologist for my SVT, heart racing and pounding at night as I fall asleep, and tightness in my chest. I didn't share the Lyme diagnosis until the cardio asked why I had seen an ID, whose name he recognized from my electronic chart. He immediately shot down any connection between my heart issues and Lyme. He did order a cardiac monitor for 7 days, and an echo in a couple weeks. The EKG he did in office shows normal sinus rythm and a nonspecific ST abnormality. Also, the was a note that there were ST changes from a routine EKG performed before surgery in 2013.
I have done a little research and there does seem to be a connection between ST wave abnormalities and lyme carditis. Does anyone have a history of this, or some knowledge about it? I dont know whether to be concerned or if it is a fairly normal finding for an EKG.
Thank you in advance for your help. This forum has been such a benefit to me, and so many others, as we try to determine how to advocate for our treatment.
Posted 5/24/2018 1:17 PM (GMT 0)
The doctor who flatly refuted any connection between heart issues and Lyme is an idiot. IMO, doctors who react that way to anything Lyme do not do so out of a simple lack of knowledge. They do it out of a warped bias against Lyme as if it were an imaginary illness.

Yes, Lyme and bartonella both can cause a wide variety of heart implications. There's a doctor with Lyme who had extreme heart issues from Lyme. You can read a little about his story here:

/www.dukehealth.org/blog/doctor-hopes-his-medical-journey-inspires-others

Please don't freak out if you read his story. His was an extreme case. Many here, including myself, have experienced various cardiac symptoms.

I have mitral valve regurge, which can occur with bartonella, according to Stephen Buhner's bartonella book. I had heart racing, pounding, skipped beats, and autonomic dysfunction. Amazingly, none of those things showed up on the EKG. The mitral valve regurge showed on the echocardiagram. No other tests were done on me at the height of my cardiac symptoms.
Posted 5/24/2018 2:11 PM (GMT 0)
I guess I struggle with the lack of willingness to accept that there is a problem, and then figure out how to solve it! It's so aggravating that money or politics or whatever, can cause so many people to suffer.

I purchased his book, haven't received it yet. The person that recommended it to me had been to the cardiologist on several occasions, told she was fine. She had a complete heart block while driving down the road and was fortunate enough to be near a fire station. They performed CPR to keep her alive, she now has a pacemaker. Insane.

Did you treat your Lyme or Bartonella and have a reduction in symptoms? I just don't know what to push for. I know if I don't push, I don't get treatment and I won't get better.
Posted 5/24/2018 2:20 PM (GMT 0)

Just Bee said...

Did you treat your Lyme or Bartonella and have a reduction in symptoms? I just don't know what to push for. I know if I don't push, I don't get treatment and I won't get better.

My heart symptoms waxed and waned on their own, long before I knew I had Lyme and coinfections.

You're right about pushing. Even with the alternative Lyme literate doctors I've seen, I feel like I have to telk them what I want, and I second guess everything they tell me. With Lyme, you really do have to be your own doctor in many respects.

Are you treating with an LLMD?
Posted 5/24/2018 2:29 PM (GMT 0)
I was, but had a reaction to the antibiotics that I was taking. I mentioned that to my neurologist at a follow up appointment, and he was concerned that there might be more going on. I did have an episode of prolonged QT, along with a crazy occular migraine and left side nerve palsy, that got me admitted to the hospital. It all went away about 15 hours after it started. Although they originally thought so, it wasn't a stroke. Doc called it a "complicated migraine with neurological manifestations". So, the concern that I may have prolonged QT, interrupted the abx treatment with my LLMD, until we get all of the cardiac testing out of the way. The ST abnormality is something completely new.
Posted 5/24/2018 2:35 PM (GMT 0)
Actually, to clarify, we THOUGHT I was having a reaction. It has continued to get more frequent and severe even after being off of the abx for months.
Posted 5/30/2018 6:58 PM (GMT 0)
I want to punch that cardiologist. I have lyme carditis and it's one of my longest lasting symptoms ( though it has gotten better). Co infections do add to the problem though. I'm now being treated for babesia which, along with my other symptoms, my doctor said can be babesia.
Also I don't know why heart monitors and EKGs always bring back normal results. How can they not pick up the crazy things we feel our hearts doing? I've had countless heart tests show that "my heart is in perfect health"
Posted 5/30/2018 8:41 PM (GMT 0)
I have weird heart/chest feelings too. I have tightness sometimes, racing and skipping. I have had multiple EKGs all coming back normal. Echo was normal and holter monitor for month came back normal also. How do you get diagnosed with carditis if all your tests are normal???
Posted 6/12/2018 6:58 AM (GMT 0)
I am scared l have this
Heart leaps about.
So string l feel nausea
Scared of dying when it stars
Posted 6/12/2018 5:15 PM (GMT 0)
LilaJ - Please talk to your Dr. about this and have it checked out.


In the meantime, are you doing enough to detox your body?
Posted 6/13/2018 10:33 PM (GMT 0)
Not got any treatment yet s tests not showing Lyme or Bart so it's scary
Posted 6/14/2018 3:15 AM (GMT 0)
WalkingByFaith, I also have (was told it is mild thankfully) mitral valve prolapse, that's same as a regurg. right? like you, mine was discovered during echocardiogram, yet another reason to look for the Buhner book to read it thoroughly (ive done parts of the protocol, havent read the book yet) to know that Bartonella may cause it, again this is "special" knowledge that most doctors aren't trained to look for.

Just Bee, it's deeply saddening if not worrisome and angering that cardiologists dismiss this, I had the exact same unfortunate experience with cardiologist; I have your symptoms also, tachychardia, high blood pressure, was prescribed beta blocker Toprol 100mg (I usually take half or 50mg) as it seems to be enough to take some of the panic, fast heartrate, adrenaline down.

You take what you can get, gotta make it work for you, that's why I accept their HBP meds and do my own research to see what else helps; this can be wrangled into some sort of quasi-treatment; Most want to help, despite the disservice of delayed/denied Dx.

If they're not on board with the whole MSIDS complex thing caused by ticks/bacteria brethren, and chances are they arent if they arent LLMD, they just won't get it no matter what; unless they start reading our 10000-300000s of uncannily similar stories lol ...
Posted 6/14/2018 7:11 PM (GMT 0)
True story. I had a whole team of doctors at mayo clinic. Lyme was never on their radar. By this time I was grasping at anything and I asked my mayo cardiologist if lyme could do this to the heart... his response was " as you probably already know we don't believe in chronic lyme here at mayo clinic".... luckily I had a backup appointment with a lyme doctor in case mayo failed me (which of course they did) so a week later I met my lyme doc who k we right away that the heart can be affected by these diseases. If you have lyme then YOU NEED A LYME DOC!
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