posted
Like alot of us, I tend to think that any aches and pains I have are just caused by lyme and co-infections, so I pretty much just deal with them.
When my chest pain increased significantly, I went to my doctor, who sent me to the ER.
The ER doc basically blew me off the second I mentioned lyme, despite an abnormal EKG.
My PCP didn't want to buck the system and went along with the ER doc without question, so I took myself to a cardiologist (my father's doc, so I knew he was good).
He took it all seriously and ran tests, suspecting inflammation caused by lyme.
Turns out that pesky chest pain is caused by cardiac ischemia - a narrowing of an artery that interrupts blood and oxygen flow to my heart.
My catheterization is scheduled for tomorrow.
Sorry this is so long. I just want to let everyone know that you have to not assume it's just lyme. A few extra tests may have saved my life.
-------------------- Take care -kelly --------------- Posts: 330 | From TX | Registered: Mar 2009
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
kelly, thanks for this post. You are right that many of us assume symptoms are from tick-borne diseases.
I am so glad you went to the cardiologist on your own because you knew something was wrong.
Please let us know how it goes tomorrow.
Posts: 4682 | Registered: Oct 2000
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
What to do when you have flutters and some discomfort... They do an EKG it;s OK so they leave it at that>>>>???????? 3 doctors so far. Plus my blood pressure when I'm really ( Duh!) and in pain is usually 160/108,, Once in a while 135/80 but not that often Posts: 2563 | From Denver,CO | Registered: Aug 2011
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posted
Hope it all turns out well for you!! I have heart issues also, but they may not have anything to do with Lyme. Thankfully, I am under the care of a cardiologist.
Let us know when you get back from your catheterization!!
nonna... Maybe ask your PCP to refer you to a cardiologist? He may do that for you.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Thanks for the support - I'll let you know what happens.
nonna - I'm a very firm believer in the fact that you know your body better than any doctor.
I have been feeling flutters and pounding sensations on and off for a long time now and chose to think it was just lyme.
When I suddenly developed stabbing pain, I knew something was different.
If I had followed the ER doc's advice, which was just let it be, I would be risking my life without even knowing it.
Luckily my insurance doesn't require referrals, so I was able to just do what I thought was best.
If you need a referral and your PCP doesn't give you one, just be such a pest that he'll do it just to shut you up.
-------------------- Take care -kelly --------------- Posts: 330 | From TX | Registered: Mar 2009
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penguingirl
Frequent Contributor (1K+ posts)
Member # 28688
posted
So if you have normal EKGs but continue to have chest/heart symptoms that come and go (but not getting worse)- do you think one needs to followup with a cardiologist?
My heart symptoms are on and off but not getting worse - just when I thought they were gone, they came back a few weeks ago.
But I also have a PICC line so sometimes I think it is the line tickling my heart. Or rubbing it, or something.
I do have a cardiologist friend who I can see without any referrals but he is part of MGH and when I had lyme symptoms over a year ago - he was denying it was lyme (but this was before I was diagnosed, etc etc) so when I told him I was CDC positive, he was shocked. But still supportive. Anyway he was like you should see Dr. S (the one that rhymes with deer) and I thought at the time yes he must be the best for this disease! Little did I know about him but luckily I found lymenet before I saw him. I already had made a potential appt w him but their office was denying me because I didn't have "lyme arthritis."
Anyway - so I am a bit cautious to see my cardiologist friend but maybe he can be open-minded!
-------------------- Posts: 1204 | From USA | Registered: Oct 2010
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posted
I'm in no way a medical professional, so I can't say for sure what you should do, but I think any heart issues are worth getting checked out.
An experienced cardiologist can usually tell at the office visit if any further testing needs to be done, I would think.
My EKGs had abnormal t-waves, which for some reason the ER doc decided to ignore. Honestly, as soon as I mentioned lyme, he lost interest in me. Very frustrating.
I was lucky that the cardiologist I went to believes in chronic lyme and co-infections.
Maybe you can keep a written record of your symptoms and then show it to your friend?
I'm not sure about the picc-line. I had one in for a couple of months, but it had to be removed due to my body rejecting it.
-------------------- Take care -kelly --------------- Posts: 330 | From TX | Registered: Mar 2009
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penguingirl
Frequent Contributor (1K+ posts)
Member # 28688
posted
Thanks Kelly - yes for right now I don't feel like keeling over in pain so I am not too worried.
It feels like inflammation. I have inflammation head to toe.
I have been keeping a log. The chest part is not the worst of it so I tend to forget about logging that in.
I might call my friend soon just to touch base. He is a family friend so he has the best intentions for me and is not pushy. So I can at least run by what I am feeling and go from there.
-------------------- Posts: 1204 | From USA | Registered: Oct 2010
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posted
My daughter (13) was in ER Sunday with bad chest pains. Lots of pressure and tenderness, some stabbing pain, and the unrelenting nausea.
EKG normal, chest xray normal, gall bladder ultrasound fine. Diagnosis: esophagal spasms. The pain has lessened in the last few days, but still some bad nausea, upper epigastric pain. Visit to gastro recommended. Does any of this sound like your symptoms?
Posts: 312 | From Utah | Registered: Nov 2010
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posted
My original symptoms were pounding and fluttering, which sadly happens on a daily basis, but I didn't do anything about it.
In the beginning of September, though, I woke up with a stabbing pain just left of the center of my chest. Nothing really changed it, and it was a steady, constant pain.
Over the next 3-4 weeks, while the tests were performed, the pain got a little worse.
It definitely hurts more when I lie down, and sometimes it pounds so much that it hurts. The holter monitor showed that the fluttering sensation is extra beats.
The symptoms get worse with exertion, and I've been even more tired that usual the past few weeks. The pain sometimes goes through to below my left shoulder blade.
Luckily, my catheterization showed no blockage. There is some pressure in my heart that goes along with my symptoms and suggests pericarditis.
My cardiologist prescribed two weeks of Motrin, followed by three months of Colchicine.
He completely believes that the problem is lyme-related and that I will have to be monitored for the extra beats and pounding, and to make sure another pericarditis attack gets caught quickly.
If I were you, sickofsick, I would go ahead and take my daughter to a gastroenterologist.
From what I understand, tendernes to outside pressure indicates a chest wall issue. I don't know how that would tie in to the nausea, though.
I'm sorry I can't be more help. I know how frustrating it is to have a sick child - my ten year old also has lyme and co-infectiions.
-------------------- Take care -kelly --------------- Posts: 330 | From TX | Registered: Mar 2009
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Doc took her off of all meds when this started. She really had a bad week. Also started her period on Sunday, doc think that is related. She is doing pretty well today. It is scary when you can't tell what is going on.
I'm glad you actually have a cardiologist that recognizes the lyme and attributes it to your problem. Sounds like it is getting the necessary attention.
My daughter also has Q fever diagnosis, which can cause myocarditis, i guess. That was why I was really worried.
I spoke with a gastro dr. that we saw a year ago and was put on her cancellation list.
All the best to you and your child.
Lori
Posts: 312 | From Utah | Registered: Nov 2010
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