What should I ask my Cardiologist?

[*Robin*]

Hi Everyone,

I have an appointment with my Cardiologist tomorrow (the one that thinks I have MVP, despite there being no evidence of it on any Echo that I've had).

My primary reason for this appointment is the constant pounding that I have in my chest, as well as the constant shortness of breath (no asthma, I've always been active, and I'm not overweight).

What complicates things is that it's looking more and more like I may have Lyme Disease. I had a negative ELISA test, but other doctors that I've spoken with seem to think that test is junk and that I need further testing, as my symptoms suggest Lyme. I'm seeing an LLMD the first week of April.

How should I go about explaining the whole Lyme thing, and what questions should I be asking him? I'm kind of at a loss here, because I don't think he knows much about Lyme, and all my heart tests have been normal, yet I recently started having the constant pounding and shortness of breath. I have multisystem symptoms, which points to something more than a "heart problem". Nevertheless, the heart symptoms are quite debilitating and affect my daily life, so I'd like to try to get some resolution.

Any ideas for my appointment tomorrow?

[CollegeGirl143]

of course mention it to him, you should mention any information you think may be helpful..

You say that you are having multisystem symptoms, how are you making the association between the shortness of breath and your heart?..  Shortness of breath can be caused by things other than the heart, are you getting it only at specific times you seem to notice a change in your heart?  I understand your heart is pounding alot as well.. Is the shortness of breath and the pounding always coupled together and never experienced without the other?

[*Robin*]

Have your doctors ruled out the Lyme? What do they think may be causing your symptoms?

It's only been since November, but I feel like I've been dealing with this for years. It is beyond stressful and scary and I am so eager to just finally get a diagnosis and find the correct treatment.

[*Robin*]

The pounding just started a little over a week ago, but it is constant, and is accompanied by shortness of breath most times.

The shortness of breath has happened without the pounding, so I don't know what the correlation between the 2 is, if any. They do seem to accompany each other, though.

My PVC's started to lessen *knock on wood*, and then the pounding started, out of the blue. It happens when I am just laying down, but it is the absolute worst when I'm trying to get some cleaning done. It just pounds and pounds and pounds, my shirt even moves with it.

If you have any opinions on what that could be, please let me know. It is very much appreciated.

[CollegeGirl143]

well.. the pounding is considered a palpitation, and im sure you know, palps can be caused/triggered by just about anything.. Its good that your heart tests are coming back ok, because it suggests your SOB might be triggered by something other than your heart, its at least something to consider if your tests are coming back totally normal and your doctor cant find anything in your cardiac workup to account for the shortness of breath.. i think you're on the right track trying to find the bigger diagnosis instead of focusing solely on the heart.

[*Robin*]

I knew that I had to look beyond my heart because of all of my other symptoms (rib pain, joint and muscle pain, dizziness, headaches, vibrating sensations, etc.) I just knew that they couldn't ALL be because of my heart. But, I just worry about whatever it is that is affecting my heart, doing permanent damage.

Right now, I just wish I knew what I could do to get the pounding to stop.

[Horsegal]

I my tell the cardiologist all about the Lyme Disease you think you have, but I would tell him what you're heart has been doing also.  Make sure he gives your heart a workover and don't dismiss it because of the Lyme Disease.   Best Wishes!

[tanns]

Wow, I swear, the similarities in our problem is so weird!!  

I will let the other people answer this with probably better knowledge than myself but...I just wanted to let you know when I mentioned Lyme to my cardio he was less than receptive.  He totally dismissed me and when I left there I felt worse than when I went in.  Also, I mentioned it to the internal medicine doctor I saw at the Mayo clinic a few weeks ago and he was also very dismissive about it.  He was fantastic about EVERYTHING else, the best, thorough doctor I have EVER been to but about Lyme, not so much.  I wanted the test because at that point (by Mar 1) my insurance was paying 100%.  But he said it wasn't likely.  I almost think that it would be better to mention it to him AFTER the LLMD visit.  Which by the way, I hope goes well for you.

Also real quick, in my past year or so of many, many, MANY tests and doctors, one of them told me that I could have 10 echos and if I was lucky, one would pick up MVP.  I was told that I had it by the second cardio I went to but the first and third cardios never saw it.  At Mayo they say "no" too, so I'm sticking with that for now!!

I learned so much by going to they Mayo Clinic.  It was an amazing experience and everyone went way  out of their way to get to the bottom of things.  If your insurance covers it and you are still at a loss, give it a try.  (if you are close--i live in Florida so I went to Jacksonville).   If anything, their equipment is so good and so very precise that it really gave me piece of mind.

Wow, I sure rambled, I'm sorry.  I wish you the best and good luck with the LLMD.  

[kitcurious]

Please explain Lyme Literate Medical Dcotor. I got the impression that Lyme comes in primary, secondary anmd tertiary episodes (with well recognized symptoms) but that chronic or "reactivated" Lyme is a "wastebasket"/junk-type diagnosis for a lot of vague symptoms that are nonspecific for antyhing.
Please be frank.

[*Robin*]

I'm sure CollegeGirl143 will know more, and I know that's who your question was directed to, but from what I've been told, a LLMD is a doctor that specializes in the treatment on Lyme patients, because other doctors tend to either not recognize the symptoms of Lyme, or give inadequate testing, such as just the ELISA test, which I had when my symptoms first started, and since it was negative, my doctor completely dropped the idea of Lyme.

Most, if not all LLMD's do not take medical insurance, so it's definitely costly.

I'm not familiar with chronic Lyme, but it seems like the disease as a whole is considered "controversial", I'm not sure why. I have read stories of people doing well with their treatment, only to get the Lyme back a few years later. I wonder how common that is?

Anyway, I don't think that helps at all, but hopefully CollegeGirl will see this and she will have the answers.

[kitcurious]

A few years back, when in for a check up, my GP casually asked what I was "Up to" and I told him archaeological digging in a wilderness type area, he tested me for Lyme.  I was tested with Western Blot. Negative.  I was told the ELISHA test was unreliable due to a high level of false POSITIVES.  That's why if you have a positive ELISA they do a Western blot to confirm it.

Do you live in the US  near a wooded area on the East Coast or spend time with animals that are in the woods? Apparently very few people on the West Coast get Lyme. It exists, but the ticks aren't carriers as frequently I guess.

I assume LLMD is controversial because many of the diagnoses are suspect and therefore the treatments are as well.

Before going to any doctor you should check their credentials with the state licensing board and look for lawsuits/complaints etc.

Lyme appears to be the "disease du jour" for unexplained symptoms. It used to be yeast or fibromyalgia.. what have you. A quick research has shown that there is no body of scientific evidence supporting the treatments many of these LLMD's prescribe .


Whatever happens I hope you are able to feel better.

[kitcurious]

ELISA, test excuse me.

[*Robin*]

I live on the East Coast, and during the summer I did walk in a park that had woods surrounding it. I was fine all summer, but had a miscarriage in September. I was only 5 weeks along.

Then, all my symptoms started in November, so I don't know if my pregnancy had anything to do with it or anything.

I don't think I had a rash, but my mom says she remembers me talking about a rash, but nothing specific. I never had a tick on me that I know of, but it's certainly possible.

My mom's doctor said that the only truly reliable Lyme test is a Western Blot from Igenex in Palo Alto, CA. They send you the kit and your doctor has to sign it and the results go to the doctor.

I hope to hear back from my Rheumatologist with my Western Blot results tomorrow. We didn't go through Igenex, though, so I don't know if it was a waste of time or not.

[tanns]

No, my doctor's haven't ruled out Lyme but that's only because they haven't considered it an issue and haven't been willing to order any tests.  My insurance is so crappy that it restarts every Mar 1, which means I have to put out 3000 dollars before they cover, then they cover 100%.  Unfortunately because this started in Nov 05, I had four months of really in depth testing and then started over and just finished another year of tests and now I'm looking at over 6000 in medical bills.  ANYWAY, because of that I am holding off on anything for now because as of Mar 1, I have to go 3000 out of pocket again.  It really stinks.  I see the cardio at the Mayo Clinic for my followup appointment and that's the only thing I have scheduled for a while.

I do remember about 3 or 4 months into this my heart was pounding at the most inappropriate times.  It wasn't at times of exertion nor did I have to be doing anything strenous.  It would scare the poop out of me.  Also, I remember folding clothes on the floor one time and I felt SO short of breath.  Out of nowhere, again nothing exertional.  It was and is still the hardest thing to accept.  I have been trying to figure out the whys for over a year.  It is very frustrating.  I get the pounding now but not as often or I'm so over it by now I don't even pay attention anymore.  I have had, as it sounds like you have, a really, really good workup.  I should find comfort in that........but I can't.  The pains are still there.

I hope you get your answers soon!!!

[tickintheticker]

Be sure you also get tested for babesia, which is a coinfection that people often get with Lyme: it can cause air hunger and palpitations.