HealingWell
Search Close Search
☰

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 5/7/2017 12:56 AM (GMT -5)
Hello. I am 25 year old female with Lyme disease.
I wanted to ask about myocarditis. I have had chest discomfort on the left side of chest for 3 months that has not went away.
I've been reading about myocarditis and I'm nervous I may have it due to Lyme and it's being missed.
I have had the following tests that all came back normal

EKG (normal; done about 5 times all normal)
Echo (two done; one in 2016 and one this year; normal)
Stress test (normal)
CT scan (normal)
X-ray (normal)

Does anyone else have this or know anyone that has this?

The chest pain is not severe or excruciating. It's just annoying and worrisome. I am able to run fine; I do have asthma. However sometimes I do feel short of breath when going up stairs. I also have been short of breath at night and had to take my inhaler. Not sure if asthma or anxiety related. My oxygen level is always ok (never had a reading below 96%)
I also want to note a few weeks ago I had the flu. Fever and chills and cough for a few days. Literally the day before getting the flu I was in the ER for chest pain. Normal EKG. Normal cat scan. However they gave me an antibiotic. Not sure if they just gave it to me because I was back for the like 6th time (I told them I was coughing blood- I wasn't I just felt I had to exgarrate to get the proper testing and it worked) or because they saw something on cat scan.

Really nervous and worried about this. Please help!
Posted 5/7/2017 12:45 PM (GMT -5)
As we've mentioned on other threads, yes, many Lymies experience terrifying heart palpitations, chest pain, lung pressure, air hunger, tightness, arm pain, etc.

Personally I get muscle twitches in my ribs and chest that makes me feel like my heart is beating irregularly, but all doctors (and paramedics'!) readings are normal. Oxygen levels normal, EKG normal.

Are you currently being treated for Lyme? Are you currently being treated for coinfections, particularly Babesia or Bartonella?

Many of these symptoms get less severe and eventually disappear with treatment, but it takes time.
Posted 5/7/2017 8:01 AM (GMT -5)
Just noticed yesterday's thread you mentioned an appointment in January. I would recommend looking for another doctor much sooner. If not, perhaps start treating with the herbal protocols to get a head start.

Most of all, breathe. Try to tell yourself it's Lyme/Co SENSATIONS, not reality. Yes, it feels like you're having a heart attack, but you are not. Yes it feels like your lungs are drowning, but they are not. I just had the mother of all panic attacks last week and called 911, but it was just that - panic attack. I have to distract myself to keep them coming back.

Of course, Lyme can have complications, but I'm assuming even those complications show up on tests. I think what you need to hear is not a cardiologist saying "there's nothing wrong with you" but a Lyme doctor to say "there is Lyme wrong with you" - causing pain and anxiety, but not permanent physical damage. In other words, not "it's all in your head" but "it's lyme in your head" which causes very real sensations, but not real damage, if you can get treatment.

If that makes any sense.

I'm trying my best to help you feel calmer about these sensations. Unfortunately, we can't reach through the computer and give you treatment, but I think reassurance can go a long way in these scary situations.
Posted 5/7/2017 8:20 AM (GMT -5)
Actually, this member is going to accompany her Mom to her LLMD appt next month.

Do be sure to talk to the LLMD about this. They should be able to tell you at least if you have something to be concerned about. Remember to take your recent tests for your heart along with you, as well as your own records showing your previous tests and treatment showing you had Lyme/co-infection treatments.

And, what Babsbunny is saying is true - we can only do so much to help until you see a LLMD that will understand what those tests and Lyme have to do with your heart.

I'm so sorry about all of this! I wish we could do something to help you get in to see a doctor sooner.
Posted 5/7/2017 8:47 AM (GMT -5)
Hi! No problem and thank you. I just wanted to make sure or see if anyone had these symptoms and had good test results didn't end up having myocarditis.

I was up all night googling and saw a lot of people who shared their stories - the doctors did see something that alarmed them.
I've been to the ER several times. I just pray that they did all the right testing and I'm trying to have faith after going that many times and having that many tests something would've shown.
Posted 5/7/2017 9:01 AM (GMT -5)
I'm glad you asked!! I do hope that others that have had this testing will be along soon to help answer your questions on this!

And, that's a good attitude to have! You have to make it to the appt with your Mom before you will have any answers, so it's good that you aren't going to sit and worry about it until then. Researching is good - just try to not let it take over your life, as that's stressful for the body and stress is not a friend to us!
Posted 5/7/2017 9:07 AM (GMT -5)
I actually am still friends with my old Lyme doctor who is no longer practicing. I just asked her if it would be typical or something to worry about. I'll let you know what says!
Posted 5/7/2017 9:10 AM (GMT -5)
Great!!! And what a good idea!!! Thank you, yes we would like to know!!
Posted 5/7/2017 9:41 AM (GMT -5)

BabsBunny said...
Just noticed yesterday's thread you mentioned an appointment in January. I would recommend looking for another doctor much sooner. If not, perhaps start treating with the herbal protocols to get a head start.

Most of all, breathe. Try to tell yourself it's Lyme/Co SENSATIONS, not reality. Yes, it feels like you're having a heart attack, but you are not. Yes it feels like your lungs are drowning, but they are not. I just had the mother of all panic attacks last week and called 911, but it was just that - panic attack. I have to distract myself to keep them coming back.

Of course, Lyme can have complications, but I'm assuming even those complications show up on tests. I think what you need to hear is not a cardiologist saying "there's nothing wrong with you" but a Lyme doctor to say "there is Lyme wrong with you" - causing pain and anxiety, but not permanent physical damage. In other words, not "it's all in your head" but "it's lyme in your head" which causes very real sensations, but not real damage, if you can get treatment.

If that makes any sense.

I'm trying my best to help you feel calmer about these sensations. Unfortunately, we can't reach through the computer and give you treatment, but I think reassurance can go a long way in these scary situations.

Babs, what a beautifully worded post!
Posted 5/7/2017 12:34 PM (GMT -5)
Good discussions - agree, a great post by Babs —

I think it's good to have the baseline tests that you had done for the typical heart issues that could come up. The tricky thing is you'll need a Lyme specialist to know what to look for. I regret my experience w/ an unprepared and uninformed cardiologist—who also turned out to be a COLOSSAL jerk. I later determined all on my own that my sx were due to the IV port catheter that is sitting too low into the heart, which he laughed at. And when he sent me the bill for what the insurance company wouldn't pay, I explained to him how much of a jerk he was and how I'm not paying for services he wasn't able to render… and was heavy on the jerk part. Sorry, I digress...

ANYWAY, ask both LLMDs if they can recommend a good cardiologist. I agree that many Lyme patients feel heart sx at one point or another (so many contributing factors) but it's also good to rule things out as early as you can.

There is a Lyme specialist in CT - Dr. Steven Phillips, who was able to diagnose his father w/ Lyme carditis. There is good info online about him - see the blog entry below. I don't remember it in detail but there may be info in it that can help you recognize unusual sx or suggest what to look for.
jennaslymeblog.com/tag/lyme-carditis/

Let us know how you're doing!

-p
Posted 5/7/2017 12:36 PM (GMT -5)
I definitely have some form of carditis. Chest pains, RBBB, tachycardia. I don't really know how you get that diagnosed though. But it's well established that Lyme causes cardiac issues in some. In rare cases it can lead to AV block https://www.cdc.gov/lyme/signs_symptoms/lymecarditis.html Serious adverse events are rare though. At least in the short term. I wouldn't be at all surprised if Lyme disease precipitated acute heart failure after decades of inflammatory stress and plaque buildup
Posted 5/7/2017 12:38 PM (GMT -5)
Oh good! I talked to my old Lyme doctor and she said that she believes with all the testing I received I should be ok. Thank God!!!
Posted 5/7/2017 12:48 PM (GMT -5)
Thanks PeteZa.. you know how Lyme brain works, I was kind of afraid I was coming across as a jerk saying, "You're fine, relax!" when I'm not a doctor. But I actually had my first 911 call bc of Lyme symptoms this week, and all I really needed to hear was "You're fine, relax!"

Fine in technical terms, not in lyme terms!

Just keep swimming.
Posted 5/7/2017 2:30 PM (GMT -5)
I cannot tell you how many times I went to call or go to a doctor.... When my pulse was 110, I was scared. When my mouth was twitching, I was scared.

I learned quickly that all weird FOR ME, was lyme. But, I sure questioned the severity of my symptoms and if they warranted going to the ER. I had no idea because I have always been so healthy.

And no one knows lyme symptoms or their severity. Terrible disease, just terrible.
Posted 5/7/2017 3:08 PM (GMT -5)
You sound just like me PereZa. My pulse was 100 last night literally from worrying about my chest sad it sucks. What a horrible disease
Posted 5/8/2017 2:22 PM (GMT -5)
I had the chest pains begin unilaterally in the left. First it was dull pain on inhale and intermittent. At times later before treatment it would progress to a sharp pain.

After 4 months it went bilateral and on some days was very painful. It was nothing like the air hunger feeling described in Babesia infection.

A nurse friend recommended Biaxin.

I have been on the generic form, Clarithromycin, 500mg 2 times per day (3 times when it is bad) for about 3 months. The pain got 90% better within the first few weeks.

You might want to ask your doctor about it.

The symptom still hasn't completely resolved but it is less frequent and less intense.

I am likely going to switch to Azithromycin in a couple months if it doesn't clear.

Oddly enough I haven't had fever or coughing for a long time.

I wish to take an abx break at the end of this month. I will likely start a thread asking about peoples experiences with abx breaks in another thread.

Best wishes for your recovery.
Posted 5/8/2017 10:15 PM (GMT -5)
Lol my resting pulse is like 100 when i'm not anxious. When i first went to the ER my pulse was 120
Posted 5/9/2017 3:47 AM (GMT 0)
I have the same thing, my heart hurts, burns, has constant heart palpitations and now my EKG shows an AV Block II and I also have a heart murmur now. I never had any issues with my heart before this awful lyme disease got a hold of me sad
My pulse races, other days it is super slow. When I first had the palpitations it really freaked me out, but now I am just trying to ignore it. Hopefully all this will resolve with more treatment.
Since all your EKG and Echos are good I would really try not to worry too much
Posted 5/9/2017 1:34 AM (GMT -5)
For me treating the vasculitis associated with bartonella has helped tach ,bbb, pain and bp
✚ New Topic ✚ Reply