Hi - I have a routine appt with a cardiologist tomorrow and am (again) on antibiotics for lyme.
I am having palpitations and what I think are other cardiac symptoms. I have a significant family history also.
I'm a bit nervous about what I should (or maybe more important) what I should NOT say about my almost 10 year battle with lyme.
The dr is not recommended by LDA etc but is in my plan, if I need something serious done, it would have to be in network.
Any suggestions? Thanks in advance.
Posted by randibear (Member # 11290) on :
i'm kind of in the same boat. diagnosed with hypertrophic cardiomyopathy, er, enlarged heart.
my father, three uncles, one aunt, grandmother, all died of heart condition. so did mother, plus i have diabetes, strokes, and cancer also. i hit the lottery!!
personally i don't mention lyme. these doctors (and i've been to many many here in texas) flat out don't believe in lyme. i don't care what practice they are in, they don't believe it, period. so i don't mention it.
just discuss your symptoms, restrictions, and medicine interactions. if he asks why you're taking something, say sinus or something, anything but lyme. sorry but that's the truth.
also if he does any testing, ask for copies of the results. i wish i originally did, but i'm going to in june.
let me know how it goes.
Posted by Lemon-Lyme (Member # 19229) on :
Hmm... I'd say get a feel for the cardiologist first, then sort of bring up the subject if you think he'll be receptive?
Since this is your first appointment, it may not necessarily even matter, as what I expect he'll do is just run the normal tests -- EKG, echo, holter, etc. But if anything is abnormal, then is the time to consider telling him, as it may be part of your diagnosis.
I see a cardiologist for cardiomyopathy too (dilated version), and had no issue bringing up Lyme with her. But she is a bit more open-minded than most docs, and in my case, it wouldn't effect treatment from her anyway -- I'd end up taking the same heart meds regardless of the cause of the disease.
But to play it safe, I was also a little purposely vague regarding how long I have been taking antibiotics -- I just say I have taken them for a couple of months, off and on, which isn't a lie exactly -- but it's more like 10 months now in reality.
Posted by TnFlowerChild (Member # 24717) on :
I would think in NJ that they would at least have a fundamental knowledge...
randibear - you did hit the Lotto! Or was "your ship" the Titanic??? - My cousin is a PA in Galveston, TX and he said "30 days on doxi" would cure Lyme - I assured him I WISHED it would!! I do understand....
My new cardiologist (here in TN) had studied at Yale-New Haven, and was very knowledgable, and also concerned about the Lyme situation... what a RARE find he was!!!!
Bring up the subject and feel him out, and make your decision then...
Good luck... keep us posted!
Posted by hereigoagain (Member # 17663) on :
Wow, Randibear - any one of those jackpots would be a lot to handle, and lyme too? I'm so sorry and hope you feel some relief soon.
I'm inclined to do just as you say and pretend I don't have lyme.
Do you know anything about chronic lyme and cardiac issues? I lost a brother in 1997 and had a good cardiac work up done then and all was okay.
Diagnosed in 2001 with lyme but I think I got it around 1997, bad flu, never really felt great since.
I see lots written about recent infection and cardio issues, not much about long term.
I'll be sure to send some extra prayers your way....
Posted by hereigoagain (Member # 17663) on :
Lots of lyme here in Jersey. Lots of drs who don't believe in chronic, late stage lyme too.
I have been very lucky and seen some very compassionate LLMDs too.
The whole thing is just insane and even after all this time I still can't believe that this is my life. I know you all share that sentiment.
Posted by Aimee (Member # 20946) on :
I agree with the poster who said try and get a feel for the cardiologist before you decide how to proceed but I think honesty has it's place too.
I had my first appt. with a cardiologist here in VA and was pleasantly surprised.
I have been having heart issues off and on since I started treatment but it got bad enough two weeks ago that I went to the ER. This was my follow up appt. with the cardiologist I saw ever so briefly in the hospital.
I have had intermittent radiating chest discomfort, pvc's, irregular beats, shortness of breath.
The doctors of course ask for your medical history and your current list of medications. I think it important to be honest about these things. Many medications, especially when used long term can affect the QT rhythm and other cardiac issues. Lyme of course can cause many cardiac issues.
This cardiologist not only recognized lyme as a possible cause after I told him how long I had been infected and treating, he also looked into the cardiac effects of all the meds I was on and ordered further testing to be sure I am okay. He also realized that lyme can affect magnesium levels and magnesium and potassium can affect the heart as well.
I know I got lucky and there are many doctors who have laughed at me or worse, most chastise me for long term abx use (the hospitalist I saw while recently admitted for the chest pain was one of those!). But I think much of the information we are asked to share is pertinent to proper evaluation and treatment regardless of whether they believe in chronic lyme or not.
I do not share the name of my LLMD with any of these doctors of course!
Hope your appt. goes well and you get some answers.
Posted by hereigoagain (Member # 17663) on :
Thank you everyone for your suggestions and opinions.
I do plan on disclosing my medications and will probably admit I have lyme.
I happen to be lucky in that I have tested positive three times over the years, most recently last fall.
I'll let you know how I do and will not diclose ANY names!!!!
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Lemon-Lyme: [QB] Hmm... I'd say get a feel for the cardiologist first, then sort of bring up the subject if you think he'll be receptive?
Since this is your first appointment, it may not necessarily even matter, as what I expect he'll do is just run the normal tests -- EKG, echo, holter, etc. But if anything is abnormal, then is the time to consider telling him, as it may be part of your diagnosis.
Agree.
hereigoagain... Randi means those things are in her family not that she HAS cancer, diabetes and strokes. Was thinking maybe you misunderstood.
Let us know how the appointment goes!
Posted by randibear (Member # 11290) on :
oh thanks for catching that. no, no, i just have lyme and heart condition.
but thank ya'll for your very heartwelcoming responses.
i hadn't been back to check on the posts. matter of thinking too fast for my fingers.
that's my ole family history which i inherited.
Posted by hereigoagain (Member # 17663) on :
Well, Randibear, good thing prayers don't go to waste and I said a bunch of them for you last night thinking you did have all those issues yourself!
Thanks for mentioning that, Lymetoo! My overanxious lymebrain will rest a bit easier tonight.
Cardiologist appt went well, I did mention lyme, he asked how long, I just told him the 3 approx dates I tested postitive over the past 10 years and that I'm on abx again now. He didn't seem overly concerned about any of that.
Good? Bad? Not sure.
He did do an EKG, and echocardiogram and put on a holter monitor on the spot, stress test in week, follow up in two. And blood work.
So, all in all, I'm happy. My BP was pretty high and my HR was at 100, usually 60 so I was pretty nervous about it so he's thinking anxiety.
Uh, yes, good call on that one anyway!
Thanks again everyone, I'll check back in when I know more.
Posted by Keebler (Member # 12673) on :