I'm an oldie here but haven't been around in years.
I thought I was cured. Yeah FAT CHANCE!! guess I was in denial.
I left a msg. on Off Topic titled I'm back!!! just the other day.
Even though my profile says I've been a member since 2001, that can't be right. I was here first in 1996 and stopped stopping by in late 2001 or early 2002.
Anyway, I suspect the Lyme is back after two years dealing with unexplained back pain (3 CT scans and an MRI) failed to show anything, and PT that did more harm than good.
Now I've had two episodes in 9 months of what feels like heart attacks with a racing heart and pulse and difficulty breathing but also experience pronounced upperback, back of neck and shoulder pain. Very scary.
I walked into the Cardiac's office on the day of the last episode and told them I think I had a heart attack.
After they looked at me like I had two heads, wondering why I didn't go to the ER, (another long political story of my BCBS insurance not being accepted in my local hospital!)
The kind doctor agreed to see me, cleared his schedule and everything.
He was very caring and deducted that I may have had what in short is called a PVST, basically a misfiring of the heart.
I've been on a heart monitor now for almost 3 weeks and he even said the chances of picking up the episode is slim.
My long winded question is (if anyone is still listening) if I dare bring up the subject of a tick borne disease?
Are there any test you guys may know of that this doc could do to check for Lyme and co infections?
Like fluid sample around the heart???
My new appointment with a new LLMD,(my old one left the state a long time ago) is not till mid July and I having a hard time thinking of waiting that long.
Thanks for any feedback and sorry this is so long.
I've always found great people at this site and it looks like I will be a regular for a long time. Thanks!!!! Trish
Sorry to hear all that you are going through. Was the cardiologist able to do an ultrasound of the heart? That is what my doctor did. Maybe talk to the cardio doctor about that. For me personally, taking magnesium helped.
Posts: 515 | From In His Loving Care | Registered: Apr 2009
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posted
Thanks MoringSong, I did have an echocardiogram two weeks ago, a few days after my incident and it came up with nothing. I don't know if that is the same as an ultrasound, but that is what it seemed to me. Same kind of eraser type tool with jelly being smeared over the area that I had when I was pregnant. Thanks for your taking time to read and reply.......Trish
Posts: 305 | From NJ | Registered: Feb 2001
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posted
Breaking this up to be able to read it.......
quote:Originally posted by trishden: [QB] Hi guys! I'm an oldie here but haven't been around in years. I thought I was cured.
Yeah FAT CHANCE!! guess I was in denial. I left a msg. on Off Topic titled I'm back!!! just the other day.
Even though my profile says I've been a member since 2001, that can't be right. I was here first in 1996 and stopped stopping by in late 2001 or early 2002.
Anyway, I suspect the Lyme is back after two years dealing with unexplained back pain (3 CT scans and an MRI) failed to show anything, and PT that did more harm than good.
Now I've has two episodes in 9 months of what feels like heart attacks with a racing heart and pulse and difficulty breathing but also experience pronounced upperback, back of neck and shoulder pain.
Very scary. I walked into the Cardiac's office on the day of the last episode and told them I think I had a heart attack.
After they looked at me like I had two heads, wondering why I didn't go to the ER, (another long political story of my BCBS insurance not being accepted in my local hospital!)the kind doctor agreed to see me, cleared his schedule and everything.
He was very caring and deducted that I may have had what in short is called a PVST, basically a misfiring of the heart.
I've been on a heart monitor now for almost 3 weeks and he even said the chances of picking up the episode is slim.
My long winded question is (if anyone is still listening) if I dare bring up the subject of a tick borne disease, are there any test you guys may know of that this doc could do to check for Lyme and co infections?
Like fluid sample around the heart??? My new appointment with a new LLMD,(my old one left the state a long time ago) is not till mid July and I having a hard time thinking of waiting that long.
Thanks for any feedback and sorry this is so long. I've always found great people at this site and it looks like I will be a regular for a long time. Thanks!!!! Trish
Trish.. Sorry you had to come back ... but glad you have Lymenet to come to!!
About that 2001 registration. I've been here since the fall of 2000 and something happened with the board in 2001 where everyone started over. So I think there's no one who is actually registered before that. I could be wrong though.
I know of NO test other than a Western Blot or PCR from Igenex that would show you have Lyme. I think they could check you for myocarditis though .. not sure what test that is.
I hope you get some answers with the heart monitor. I'm on a 3 wk one also .. about 5 days to go.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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I'm actually seeing a cardio today for a similar problem. They put me on a monitor for only 24 hrs. Cardio Dr is s'posed to go over the results with me. I don't think it will show much because I didn't have an episode.
I'm leery of mentioning lyme to the Dr. I have a LLMD now, so think I'll leave that with him. Kind of feeling like this cardio appt is a waste of time.
In your case, since you have to wait so long for your LLMD, I might mention the lyme. Keep your expectations low though.
Have you done a stress test? I wonder if that would trigger something in you.
Good luck!
-------------------- Sofi Posts: 150 | From Northern California | Registered: Jun 2009
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posted
Trish, I see a cardio regularly for IST and NCS (a type of tachycardia and syncope). When he heard I was reinfected he did another holter monitor on me, because he knows Lyme can affect the heart.
The one time I did a event monitor I didn't have the symptoms we were looking for. I was disappointed, so asked the cardio if I could record my different palp episodes and he ok'd it. I found out I have a lot of different arrhythmias , not any that are serious.
I don't think he would ever do a lyme test on me, but maybe if I didn't have a LLMD he would.
Sofi, when I had the holter (24 hr. monitoring) I didn't feel any symptoms, I was just my usual tired self. I never had palps and usually don't. Anyway, the holter showed I had a lot of tachycardia up to 170bpm. I was shocked!
That and the NCS was why I was so tired, but I didn't have a clue. When they started treating it I felt a whole lot better, that is until Lyme got its claws deeper into me.
Posts: 471 | From NJ | Registered: May 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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What is your level of magnesium supplement these days? Are you taking fish oil or krill oil?
Taking hawthorn extract. CoQ10 or L-Carnitine? These are all helpful but of the best help is magesium, even up to 1,000 mg a day (with calcium, too). It can be extremely helpful in regulating heart rhythm.
--
Can you find a cardiologist who is LL? Call all the LLMDs around and ask for their recommendations. Even better would be a WOMAN cardiologist who is Lyme Literate. Most male doctors simply are not aware of the difference in a woman's heart. Heart disease in woman does not always have the same signs as in a man.
But, if a doctor is not LL, I don't see how they can possibly serve you well.
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A stress test could just fry your adrenals- and possibly damage your heart if lyme (or other infections) are active.
And, even with the injection type of stress test that may be less work, it could still worsen lyme, stress your liver or overwhelm your endocrine system.
I've never done a stress test but once a P.T. wanted to check my endurance on the stationary bike - I rode as hard as I could for as long as I could (5 minutes). The next morning, I was nearly paralyzed - my brain just could not control my limbs - and have never gotten back to where I was before that test. This was before I knew I had lyme and 2 other coinfections and thought I "just had CFS." I was determined to push through it but caused damage.
I don't thing anyone with a possible infection of any kind should EVER undergo a stress test as it can be damaging to the heart if infection is present. My reason is explained in the thread below with the test on mice with coxsackie virus. Other infections, too, can damage the heart during aerobic exercise - even just one time, even if just for a few minutes.
And, before you even think of scheduling a stress test, please watch the 3 hour video in the links below. While not necessary about lyme, this is very important:
I go back to the cardio on the 11th and he mentioned a stress test.
I just can't imagine doing one with my back pain and how out of shape I've become with these extra pounds.
They may not even make you walk a lot. My legs wouldn't cooperate since I have sciatica, so I was stopped after about 10 minutes. ( or less?? )
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
I have severe PSVTs caused by Lyme. They have ruined what little was left of my life.
A Cardiac Event Monitor picked it up on the first night. Two Holter Monitors had failed to find it.
I now take a combo of long acting Verapamil and L-tryptophan that halts most attacks right at the start, and I severely limit my lifestyle to avoid triggers.
PSVTs are caused by an extra loop of electrical tissue. There is a $60K ablation procedure to get rid of them, if you are a candidate for it.I am not.
If it is PSVT, the event monitor should pick up an attack eventually. Good luck, and I hope it is not PSVT.
klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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The reason he didn't make a big deal out of it was because it is considered a "nuisance" arrhythmia as opposed to a dangerous arrhythmia. Also, the fact that you only had it twice in 9 mos.
I think if you had it more often and were symptomatic (fatigue or such) that he may have treated it. My IST is a "nuisance" arrhythmia, but is treated for 3 reasons - I had it for hrs. a day, it caused fatigue and terrible brain fog, and it triggered my NCS.
The things he told you to do are called vagal maneuvers. My cardio tried them on me during a TTT (tilt table test) and they weren't effective.
My LLMD says it is from Lyme, but I think that the worrisome fear of Lyme attacking the heart is cardiomegaly or something of that sort. Not a "nuisance" arrhythmia. I think there are many Lymies with these arrhythmias.
It might be a good idea to try the stress test to see if it triggers anything. I am guessing it's a better test for heart damage, because my cardio had me do it even after doing an echo.
I am not a dr., nor do I play one on tv, or the internet.
Good luck, liz
Posts: 471 | From NJ | Registered: May 2009
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posted
I know I haven't been in here that long but when my daughter had very bad neuro lyme in 1996 she had horrible episodes of tachicardia. Speeds of 280bpm . Cardiologist convinced me to do the abalation, needless to say she is now 26 and is still taking RX to control speed of her heart.
Cardiologists will all tell you its not Lyme related but you can't tell me it's not. Lyme and heart problem both started same time. You tell me it's not!
Posts: 21 | From newtown,CT | Registered: Oct 2002
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Yeah FAT CHANCE!! guess I was in denial. ![[kiss]](graemlins/kissing.gif)
at this site and it looks like I will be a regular for a long time. ![[Frown]](frown.gif)
Thanks!!!! Trish
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