posted
I went to my Cardiologist for an Echo, and they found that a part of my heart might not be functioning properly. They wanted to admit me under an Infectious Disease Doctor and get a PICC line tonight. I said no.
A few minutes later, the doctor who read the echo said it most likely was normal, but I had to sign a paper stating that I was leaving the heart hospital (Deborah Heart and Lung), against doctors orders. My Cardiologist told me that the reading doctor called her back and said what he saw was most likely an "artifact" and that my Echo was normal. Even so, she wanted me on IV.
I am so scared right now and I don't know what to make of it. I called Dr. E and she is going to talk to my cardiologist tomorrow.
Right now I'm having chest pain, tenderness, shortness of breath, and a burning in my chest and throat. I think it could be part of a herx, but I don't know.
Please give me your opinions. I don't want to be on IV Rocephin if it's not absolutely necessary.
With everything that I have to do, it's not practical for me. I'm in weddings, have real estate stuff to do, meeting with clients and such, etc. I just now got back into it after being off for months. For me and my lifestyle, oral antibiotics are best.
I had my fiance and mom there with me and none of us can understand why the Cardiologist first said that there was a part of my heart not functioning properly, and then after leaving and coming back in said that the doctor who read it said it was normal, and that what he saw before was an artifact. We asked a million times, but never got a straight answer. She said that the only way to know for sure if the Lyme has affected my heart would be to take a biopsy, which would involve surgery and she doesn't want to do that.
It seems like my Cardiologist is against my LLMD, even though she said she will call her tomorrow. She is concerned about me seeing an Infectious Disease Doctor, which I haven't heard a good thing about yet.
If my LLMD recommended IV, I would say ok, but she doesn't think I need it. I'm in so much pain all over today (probably a herx), and this appointment was the last thing I needed.
To top it off, my Cardiologist said that the ID would only give me IV for 2 weeks, and I think we all know that's not long enough.
Should I be making an appointment to see my LLMD sooner? I don't see her for 3 weeks as of now.
Posts: 64 | From PA | Registered: Mar 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I would call your LLMD ASAP. I would call before I left the hospital ... this would constitute an emergency in my eyes.
I have had such bad luck with doctors that my LLMD is the only one I trust.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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I am sorry I don't have much advice to offer. Just seding some support your way.
I would want to see my LLMD sooner. I would also have a second opinion on the echo ASAP. I am not saying that to worry you. It could absolutely be nothing but you are going to worry about it being something from this day forward.
Call tommorow and get copies of the echo report and the echo itself. Call your LLMD or another doc and have them recommend another cardiologist to re-read everything. If there is something wrong they will find it...if everything is okay they will put your mind at ease.
Take care..kit
Posts: 655 | From Pennsylvania | Registered: Jul 2006
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posted
This doesn't sound like they have their act together, and it is a good reason to question their recommendations. ID docs are usually not well informed about lyme and will cause trouble in your treatment.
However, being offered IV rocephin is a step in the right direction. They are at least thinking lyme treatment is necessary. Two weeks might not do much if you have had lyme for longer than a year. ANd after you had those two weeks, the ID doc might very well tell you that you had post lyme syndrome and needed no more antibiotic treatment at all!
Unless there is a clear signal on the heart, seems like your plan of orals under the guidance of your lyme doc will work for you for the present. Since they haven't given you a clear signal, maybe the best response is to tell them you will take it under consideration. And then just discuss it with your lyme doc at next appt.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
I called Dr. E. and she said for my Cardiologist to call her tomorrow. She didn't understand why they thought it was something and then was nothing, either.
I'm worried because my Cardiologist only wants me to see this ID and be on IV for 2 weeks. That's not going to do anything, and I've heard nothing good about ID's.
I got scared when she made me sign the release paper because she didn't want me to leave. She was in such a rush for the PICC line.
She said my heart was structurally normal, but then she started saying that there's no way to tell if Lyme has affected the heart without a biopsy, so why not treat it aggressively.
I told her that I am trying to treat it aggressively, but IV is not for me at this time. I asked her if I was in any danger, and she said she didn't think so, but she couldn't be sure.
There are people who go years and years without being diagnosed, and she is making it seem like my palpitations are going to kill me, which I pray they don't, obviously. It seems like so many people have symptoms similar to mine, but aren't on IV.
It's so difficult having all this pain and then having to deal with a Cardiologist that is only seeing things one way. I am going to ask Dr. E. if she can recommend a Cardiologist to read my Echo.
If anyone else has any advice, please let me know!
Posts: 64 | From PA | Registered: Mar 2007
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posted
Get copies of all records from this doc. What you are told verbally may not be what the written medical reports actually say.
Also get a copy of the echo film if possible.
I would definitely want to get a 2nd opinion from another cardiologist. With anything heart related it is always better to be overly cautious and not ignore symptoms.
I don't think you will really get any answers until you get another opinion.
Are you on any heart/B.P. meds? Can't tell from your description if you have been diagnosed with heart palpitations or an actual arrythmia. The biggest danger with an arrythmia is blood clots.
My dad who never goes to docs had pneumonia a few years ago -- by the time he went to the doc he had developed an arrythmia. Docs wanted to put him on meds, but he decided to just treat with nutritional supplements such as CoQ10, hawthorne, vitamin E etc. He is a farmer and in very good health. Has not had any more problems.
One extra cardiac risk for Lymies is hypercoagulation. This means your blood is too thick and will clot more easily. Have you been tested for fibrinogen levels? Very important if you have an arrythmia or even with frequent palpitations.
Would also suggest a treadmill test if that has not been done recently.
Let us know the outcome of any followup testing.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
I'm going to call tomorrow and ask for a copy of the Echo.
My Cardiologist said that when she was going to dictate the visit, she was just going to say that everything was normal, but there is no real way to know if the Lyme has affected my heart without doing a biopsy.
I just don't get it. Yes, I believe that Lyme is the cause of my palpitations, without question. I never had a palpitation before taking Prednisone (for a dye test I had to have done). I now know that Prednisone is not something someone with Lyme should be given.
There are a lot of people who get heart palpitations with Lyme. Does that mean we all have something wrong with our hearts? My Cardiologist just wasn't making sense to me. She just kept saying "why don't you want to treat it aggressively?". I DO want to treat it aggressively, with oral antibiotics. I personally don't see what only 2 weeks of IV would do for me.
If I absolutely had to do IV, I would think it would be for a lot longer than 2 weeks, right?
I don't think my fibrinogen levels have ever been tested. Who would I ask about that? My LLMD?
I'm sorry if I sound ignorant. I'm still so new and confused about this whole thing. I have heard of hypercoagulation, but I have no idea what it is.
I hate playing phone tag with doctors, and it looks like that's what I'll be doing tomorrow.
Posts: 64 | From PA | Registered: Mar 2007
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quote:Originally posted by seibertneurolyme: Get copies of all records from this doc. What you are told verbally may not be what the written medical reports actually say.
Also get a copy of the echo film if possible.
And definitely get checked for hypercoagulation. Maybe your LLMD will know how to do that.
Kinda sounds like we are in the same boat! I was taken by ambulance to local hospital with atrial fibrillation. Fortunately it stopped after several hours. I was discharged with an appointment to see a cardiologist. I had worn a Holter Monitor for 24 hours and my pcp said it was perfectly fine. Meanwhile, while wearing it I had numerous palpitations...go figure!
Cardiologist looked at my EKG and told me that it appeared as though I had had a heart attack at one time...something irregular. BUT, he agreed that my present problem was probably due to a flare of the lyme. (could've blown me over on that one!) Am having an echocardiogram Saturday and the 4 hour nuclear stress test after that.
I will make sure to ask for the echo results so I can share them with llmd.
Back on abx after being off for 9 months. Within five days my heart settled down again.
Keep us posted. You are already on abx so wonder why they feel the iv rocephin is necessary.
We do learn from each other with this d*** disease!
All the Best
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I had an abnormal doppler echo-cardiogram.
The Pulmonologist said that maybe he had found a reason for my shortness of breath....
Congestive Heart Failure!!!
I then consulted a family known Cardiologist.
He said echo's were notorious for not being very "clear" especially if you are thin...
I am thin and getting thinner.
I had a nuclear stress test done....
I only lasted about 5 minutes on the treadmill.
Scariest thing to wait for those results.
Saw Cardiologist again following lunch to be told
Your heart is PERFECT!!! He said they saw none of the negative indicators on the stress
Test that the echo had indicated.
I cried....I was so relieved.
None of these doctors know anything about Lyme, but I do trust the cardiologist
To know if there is something wrong with my heart.
BTW after many EKG's,(done by ducks) all which were "normal",
The cardiologist actually picked up on a slight abnormality.
He asked me if I had scoliosis.....which I do.
He said that explained the slight irregularity of the EKG.
He wants to see me in a year....not to repeat the stress test,
But just to keep tabs on me as I have a strong family history of heart disease.
Hang in there.....
Sending you positive thoughts and prayers.
See if the cardiologist can do a stress test to rule out or diagnose a problem without a biopsy.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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I have a problem with your docs conclusion and I do not mean to disagree or not. Here is my problem.
I have never heard of artifact and symtomatology at the same time. If you where asymptomatic then I would agree. Just my opinion and not medical advise...
Tell your ID that you would insist on more then a two week IV. If you want to, and should in my opinion, treat lyme agressively then orals is not the way to go. again IMHO
Ask him what the rational is for two weeks versus four?
If you are looking to treat both your cardiac muscle and lyme there has been anecdotal evidence that hyperbaric oxygen does aide in healing the heart muscle. It also kills lyme.
Discuss this with your LLMD. It is another option that you can consider.
Blessings,
Julia
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
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stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
get an mri or cat scan. whatever is the next step in the process also need stress test. this test is now done with drugs to increase your heart rate rather than running.
both will either be neg or positive and they can go from there.
docdave Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I know people who do lead AMAZINGLY active lives while on IV Rocephin!!! It doesn't hold you back!!!!!!!!!!!!!!!!!!! We have this one local mom who is INSANE in a good way with being overcommitted- she was diagnsoed MS and has an absurdly high number of brain lesions and is on IV while doing 300 things a day without stopping even though she OUGHT to be unable to walk looking at her brain!!!!!!!!!!!!!!!!!! And another guy who has been on IV a while who is extraordinarily active-
I would go for the IV Rocephin because I love IV Rocephin- it saved my life- and it doesn't need to hold you back at alL!!!
Plus, I just wouldn't mess around with my heart if even there was a chance-!!!!!!!!!!!! Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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