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Posted 6/10/2023 12:02 AM (GMT 0)
Hi, everyone. It's been a hot minutes since I've been on here. But this is always a trusted community to come to when you're needing help. I'm having a new problem and needing some insight.

On Tuesday I had a pretty scary cardiac event that I should have visited the emergency department for, but my medical trauma was speaking too loudly, and I decided to take a wait and see approach. My Lyme doctor told me yesterday that if I was 51 she would have been concerned that I had a heart attack. But since I am only 31, she's thinking it might be Lyme carditis. Based on symptoms like migrating joint pain, we believe that the Borrelia is the most active infection right now, and she said it sounds exactly like a Lyme thing and not any of the other coinfections.

I had an episode that started with impending doom feelings, then started getting sharp stabbing chest pains that happened every few minutes for about three hours. That was followed by some heartburn feelings, then chest tightness, then trouble breathing and dizziness. Literally every heart attack symptom for women. She told me that if it happens again I have to go to the hospital.

In anyone's experience, is it worth the trauma to see a specialist and get all of the testing since she thinks the diagnosis is Lyme carditis? She thinks that with meds to kill the Lyme and some restorative heart herbs that things should return to normal. It just scared me. I trust her, but I wanted to know about your experience or opinions.

Today and the days after Tuesday, my chest has felt tight, and I've had trouble breathing with some dull aching. From what I understand, those are common myocarditis symptoms. What else should I look for in terms of when to seek additional help? I know there really isn't a lot you can do for it. Just rest.

My biggest issue, and could be part of the problem, is that I have to depend on caffeine to get through a day. I have insane sleepiness all day everyday, despite 6 months on CPAP therapy for sleep apnea. And I know that I need to cut the caffeine to allow my heart to heal. But I am so dependent on stimulants to get through a day. Any ideas to help with that? They prescribed me Adderrall at my neurologist's office, but that can't be much better for my heart.

Thanks so much for reading! It's good to be back.
Posted 6/10/2023 12:07 AM (GMT 0)
I went to the ER recently for similar complaints. It was myopericarditis.
When it's related to your heart, don't gamble. Play it 100 % safe & get it checked out.
That's what I would do. And I did. :p

Myocarditis is a serious problem. If that's what you have, you need actual meds. It doesn't go away on it's own.
Posted 6/10/2023 12:09 AM (GMT 0)
Vimzor, what kind of testing did they do for you to find that condition?
Posted 6/10/2023 12:25 AM (GMT 0)
Blood test & echocardiogram. My troponin value was too high. My symptoms were similar to yours.

"A troponin test measures the levels of troponin T or troponin I proteins in the blood. These proteins are released when the heart muscle has been damaged, such as occurs with a heart attack. The more damage there is to the heart, the greater the amount of troponin T and I there will be in the blood."
Posted 6/10/2023 12:54 AM (GMT 0)
Vimzor, I wondered if that blood test would be helpful, but I wondered if it would be too high constantly or only during the actual cardiac event? My doctor said it would only do any good to get tested while the episode was happening. Which is why I should have gone to the hospital Tuesday, but I didn't.
Posted 6/10/2023 12:54 AM (GMT 0)
I definitely understand wanting to avoid wading into the cesspool of mainstream medicine as much as possible, so when I started having cardiac symptoms I purchased a home EKG device for about $80 (Emay brand). It's not as good as an echocardiogram, of course, but it can help to tell you if something is off with your actual heart. This was helpful for monitoring my arrhythmia and POTS, and helped me distinguish between heart issues and things that can feel similar (heartburn, costochondritis, etc.).

I also have a BP cuff and a pulse oximeter. Those three gadgets bring me peace of mind about my heart.

I hope that this turns out to be harmless and doesn't recur!
Posted 6/10/2023 1:24 AM (GMT 0)
Great idea, saraeli. I didn't know you could get a home ekg device. I do have a blood pressure cuff coming and have a pulse ox already. My O2 and heart rate have been pretty steady today even with the symptoms, which was surprising to me. I'll look into the ekg device. Thanks!
Posted 6/10/2023 10:17 AM (GMT 0)
i have just gone through these type of symptoms with lyme and co

as above these symptoms are not to be ignored as there is a very real risk of heart attack - and a number of other heart related life threatening - or long term heart damage causing effects.

lyme can cause lyme carditis of several different forms at any point ( though its more common in the early stages)
bartonella can cause vegetative growths, valve issues, endocarditis, myocarditis, clots etc etc
some of the other co-infections like brucella and rickettsia can cause similar issues

i have also had very poor experiences with the medical profession and find the entire process stressful
but knowing these are serious symptoms not to be ignored, (rathe than the general strange Lyme symptoms that come and go ) i went to ER -

they did the following
-physical exam
-troponin levels blood test
-general metabolic panel blood test
-chest x-ray
-EKG

this can pick up the majority of serious issues - and having these checked reduces your risk of sudden death by a dramatic amount ( the ER is very systemised for heart pain and will not release you if they feel there is a serious risk of sudden death )

you do not need to mention lyme

in my case i felt it was important that they at least be aware of a possible infectious disease driven endocarditis risk so when asked about my general health i choose to say
" i have been ill for 8 years after being bitten by insects on a picnic on farmland" and let them draw their own conclusions

again - the symptoms you describe are NOT TRIVIAL

i would question the wisdom of any type of medicine or naturopathic practitioner who did not advise you to go and have these absolute red flag type symptoms checked out immediately.

please do not take risk with your health due to fears over medical prejudice - acute life threatening illness is actually one thing the conventional western system is pretty good at (its the chronic stuff they mainly struggle with).
Posted 6/10/2023 2:14 PM (GMT 0)
If you are still having symptoms today, I would go to the ER. Get it checked out.
It's not worth the risk of having heart damage for the rest of your life. Herbs can't restore your heart once it's damaged. Nothing can.
Posted 6/10/2023 5:34 PM (GMT 0)
Garzie and Vimzor, thanks so much for your input! Things weren’t hurting much this morning so I tried about 5-6 minutes of very slow stationary bike riding. Within that timeframe, my chest started hurting again. There’s definitely something going on. I don’t know if it warrants an ER visit, but I do think I will go see my primary care doctor next week to see if he can do something like an EKG, echo, and the blood work. He’s done the echo and ekg in office for me before. Don’t know if he still does it or not. I do agree that some peace of mind and answers would be great.
Posted 6/10/2023 5:52 PM (GMT 0)

MA10 said...
Vimzor, I wondered if that blood test would be helpful, but I wondered if it would be too high constantly or only during the actual cardiac event? My doctor said it would only do any good to get tested while the episode was happening. Which is why I should have gone to the hospital Tuesday, but I didn't.

the toponin test is best used in the first 12 hrs after an event - up to 24hrs - after that not helpful

but note - the test is less useful at diagnosing heart attack in women - mainly because the levels were set by testing men and many hospitals do not yet use sex specific thresholds ( some do )
men have more heart attacks than women - but more women die from them than men - due to difficulties in diagnosis and the bias in the medical system

but heat attack is only one heart condition caused by these infections - there are many more than need to be checked out. And they can come on suddenly - so a clear test a few months ago is not really reducing risk much.

AFTER having all my tests done and them not finding anything wrong - so i am no longer considered high risk - i was told to call an ambulance if i have chest pain lasting more than 20 minutes that is not relieved by nitro-glycerine spray

without having any of these tests done - you would i think be considered high risk - and so i would go to ER if i had pain lasting even 5 minutes it it showed the red flag symptoms you describe.

none of the tests are invasive or painful - just take a book - as its likely to take a while

OK - hope its of some help
Posted 6/10/2023 6:15 PM (GMT 0)
Garzie, that is helpful. I was wondering about the blood tests. My chest pain comes in waves. Now it’s just kind of an ache. Which I know is probably also not good. The shortness of breath today I think is from my asthma flaring because of the air quality where I live. But I am definitely keeping an eye on it. If something like Tuesday happens again, you better believe I am going to the ER this time. When is an ER visit warranted? For all of those symptoms I had Tuesday, or just with constant chest pain?
Posted 6/11/2023 9:59 AM (GMT 0)
mine also came in waves - and has resulted in a constant mild pain the rest of the time

if it were me i would want to have the basic tests like x-ray, EKG etc done sooner - rather than wait for another extreme event - for peace of mind.
Posted 6/11/2023 11:34 AM (GMT 0)
MA10,

Sorry this is happening to you. I haven’t had carditis, but I do have mitral valve regurgitation and prolapse and had other cardiac symptoms at the onset of Lyme symptoms and afterwards.

I understand the feelings about seeking medical care, but I am pretty sure carditis can be a very serious issue that requires proper care (not just Lyme treatment). I strongly advise you to go see a very good cardiologist and get the complete work up. A primary doctor is not qualified and trained in complete cardiac care. You wouldn’t (and couldn’t legally) hire a handyman to rewire your house. You would hire a certified electrician.

I have had a cardiologist since the onset of Lyme, and I get checkups yearly or more and get echocardiograms every year or two based on my results. I am glad I have a cardiologist. If the thought of seeing a new doctor who doesn’t know your history makes you feel overwhelmed, ask a friend or family member to go with you for moral support.

Post Edited (WalkingbyFaith) : 6/11/2023 3:38:25 AM (GMT-8)

Posted 6/11/2023 11:45 AM (GMT 0)
I would say an ER visit is warranted for ANY chest pain. Be sure to tell them when and how it started and has continued. ER’s usually take any chest pain seriously and check the heart out promptly. They tend to assume the heart until proven otherwise.

Younger people can have heart attacks, too. No one should assume it couldn’t possibly be a heart attack just because they’re under 50.

For what it’s worth, I once called my cardiologist office to get an appointment because I was having chest pain. They said I needed to go to the ER. If you asked any medical person, they would all tell you if you have any kind of chest pain to go to the ER.
Posted 6/11/2023 3:13 PM (GMT 0)
Thank you so much, everyone for your insight! You’ve helped me feel more at ease about going to get checked out. I really appreciate all of your personal stories and the encouragement. smile
Posted 6/11/2023 4:58 PM (GMT 0)
https://www.lymedisease.org/lyme-carditis-heart-block/

I did not read this whole lengthy post yet. Most of us here had heart palpitations. I also did for quite a while, so my Lyme doctor had me go to a heart clinic and had a full heart work up done including a video of my heart working I was around 48 at the time so I’m glad it was done for peace of mind.

I had the whole thing repeated about a year later to find a few improvements. I did have some lighter type of heart block, which is an electrical issue, and then improved a year later. it was still not perfect, but nothing out of the ordinary for some one in their late 40s.
Posted 6/11/2023 5:10 PM (GMT 0)
Everybody who contributed to this post and others reading remember this, if you didn’t know about it:

Unless you were actually near death, you don’t have to go to the ER at a hospital if you have a local urgent clinic.

Many areas of the US now have what is called urgent clinics. They are much smaller, but almost as capable as the ER.

Since they are a walk-in basis, and people are not delivered there by ambulance, you get in faster if you or someone is able to drive you there, and it’s not as expensive. It’s much less stressful to. These are getting much more popular.

I went to one of these when I had a blood clot in my leg. I called them first and said if it was wise for me to go there and they said yes, hurry up we will see you before the ER does at the hospital!

Going this route also wont plug up the ER at the hospital which is better left for massive car, accidents or near death experiences, shootings, etc.

I would suggest anyone reading list to find out if you have an urgent clinic around you and what they handle before you actually need one again.

Post Edited (astroman) : 6/11/2023 9:23:42 AM (GMT-8)

Posted 6/11/2023 5:30 PM (GMT 0)
Hey, Astroman. Thank you for your input. We have freestanding ERs here, but every urgent clinic I’ve ever talked to said they would send me to the main hospital and wouldn’t see me for chest pain. I’ve tried before. So dumb. I don’t think our urgent clinics are equipped to handle the cardiac testing here.
Posted 6/11/2023 5:47 PM (GMT 0)
I was just thinking about that a little more and I was going to edit my post, you hit the nail on the head.

Now that I think about it more, even the ones in my area, have a different look on the outside when compared.

The one near me actually does have ambulance service entrance but the two times that I’ve been there I never seen or heard an ambulance show up. It looks like a hospital ER on the inside also, so now I’m assuming this can really very by location.
Posted 6/11/2023 5:49 PM (GMT 0)
i think it might be the fast turnaround on the Troponin blood test that needs a main hospital lab - takes about 1hour
Posted 6/11/2023 5:57 PM (GMT 0)
Astroman, I don’t even know if the freestanding ERs would even take me. But it would be worth calling and asking.
Posted 6/11/2023 6:36 PM (GMT 0)
I only had the heart blood test one time, which was at a regular clinic they just made time for me to do it.

The rest of the full heart work up , imaging, video was done at the heart specific clinic, but not under an emergency timeline. Insurance paid for most of it.
Posted 6/11/2023 9:56 PM (GMT 0)
I decided to come to the ER. Thank you all for your help. I will keep you posted.
Posted 6/12/2023 11:13 AM (GMT 0)
good luck MA10

i think its the right course of action to be safe

most likely they will do the basic tests and send you away with some follow up with primary care providers ( that's it the course i am now on )

but at least you will have a little more peace of mind and know you have done what you can to manage the risk

all the best
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