I recently went to see a new LLMD, and he suggested I have an EKG before taking coartem. He wanted me to have one at his office (200 miles away from me) but I didn't for fear that my insurance wouldn't cover an EKG done out of state.
Now I am home and I called a local facility and asked if they would administer such a test, and they said no and that I would have to go to my GP to get it. I know my GP will not be on board with Lyme treatment. Sad, but true..
I was wondering whether anyone else has come across this problem and where you might have gone to get an EKG? I suppose that it's possible the person I spoke to had incorrect info.
Thanks!
Posted by steve1906 (Member # 16206) on :
I had many EKG's throughout the years. Every GP has a machine in their office.
Don't mention Lyme disease to your GP - just tell him/her you have been having chest/heart pain and they should give you an EKG for that reason.
If they don't, request it, (it’s your right) it's a very simple test, and only takes a couple of minutes.
Posted by Lymetoo (Member # 743) on :
Right. Just ask for an EKG. Tell the dr you are worried about heart issues and it would make you feel better if you had a baseline EKG run.
It's no big deal...or shouldn't be.
Posted by Keebler (Member # 12673) on :
- As Steve suggests, you could just stay silent about lyme . . . and say there are reasons for an EKG.
However, I would just want to be up front and know if I can EVER go see the PCP again even for regular stuff or support basics while treating for lyme. It's hard to be deceptive and can be risking in various ways.
I suggest not using the word "worried" in any sentence with your GP. The thing about word choice is that most doctors think those who "think" they have lyme are basically psych cases and worry too much.
I would say - in a matter of fact tone - that you are
"going to do this protocol and need to take the precaution beforehand of getting a baseline EKG" . . . "would you be able to work with me on getting that - and will it be coded it in such a way that it will be covered by insurance?"
(not sure of the best way to phrase all that, though). Going further, you might just lay your cards on the table and say something like:
"I know there is a difference of opinion in the medical community about lyme. I have decided to go with a protocol from someone who has experience in this area. Would you be able to just be here for me with certain baseline testing - or other things that are not directly related?
I need to tell you this, so you know what I'm doing, though, otherwise, you may not have the whole picture. I'm not asking you for lyme treatment, just for your basic support."
It needs to be asked, somehow, so you know if your PCP is at all still on your team.
It may seem minute to be careful with simple word choice but it could make a difference in in your GP could possibly see you as you are, grounded in your thinking. I guarantee you, that if you say you are "worried" about anything, ever, that will phrase will be made in your chart and it won't make you look good. -
Posted by desertwind (Member # 25256) on :
We cannot complain that our GP's don't care to understand about lyme disease and at the same time hide our disease from them.
I don't think lying or hiding anything is the way to go. Tell your GP your lyme physician has ordered an EKG prior to beginning your medication protocol. Keep it short and simple. Get a script from your LLMD if need be.
For me, having Q-Fever, I had to see a Cardiologist every 6 months and my LLMD and Cardio stayed in contact. I would never "hide" this from the Cardiologist or my GP!
My LLMD sends my GP notes/updates from every appointment I have with him. I do not hide the fact that I have Lyme disease and that I have / am being treated.
It's a learning curve for everyone. Your GP does not have to agree with your treatment but if he/she refuses to give you an EKG then there are liability issues with that. Sometimes we have to have thick skin and do what is best for us.
I do not believe in hiding lyme from anybody - especially other health care providers that may need to be a part of our treatment on some level.
If you really do want to bypass your GP then get a script from your LLMD for an EKG and go to a Cardiologist or a Urgent Care Center. Most Urgent Care Centers have EKG's on site.
Posted by lax mom (Member # 38743) on :
I agree desertwind, but when you have your LLMD's office telling you not to mention Lyme to your specialists, it gets confusing and very dicey.
Posted by desertwind (Member # 25256) on :
Lax mom; I missed that piece. That does makes treatment very confusing and puts everyone in an awkward position. Nothing is ever straight forward w/ thus stuff.
Posted by lax mom (Member # 38743) on :
desertwind: I don't think Splashi said that was their issue, but that has happened twice to me when I have gotten phone calls reminding me not to mention Lyme before a procedure or hospitalization. Posted by Lymetoo (Member # 743) on :
You don't have to hide anything. Getting a baseline EKG is always a good idea.
FWIW, EKG's don't show much. It is a "picture" of your heart's rhythm at one point in time. But if it makes your LLMD happy, get it done.
Posted by steve1906 (Member # 16206) on :
Splashi1 is looking to have a simple EKG done, if his/her doctor is not lyme friendy then you should not mention Lyme.
Posted by lax mom (Member # 38743) on :
Any GP will do an EKG at the first mention of palpitations, racing heart, etc.
Everybody has a skipped beat or palpitation at some point, just mention whatever thing is going on with your heart. Do you ever feel lightheaded, dizzy along with feeling like your heart is flopping?=EKG
I went to my regular Dr once and said it feels like a butterfly is in my heart, they ran an EKG no big deal.
Posted by Keebler (Member # 12673) on :
- steve does make some good points.
"Splashi1 is looking to have a simple EKG done, if his/her doctor is not lyme friendy then you should not mention Lyme." (end quote)
If we know the doctor could make trouble for the LLMD (and that can sometimes be a huge amount of trouble that can literally destroy lives) . . . and we still need certain medical things done . . . there are ways to be discrete and wise to protect our access to even some medical support and then ensure that we can continue on outside of that to get what else is needed.
It can be a tough call. -
Posted by Splashi1 (Member # 28173) on :
Thank you all, for your responses. I rang my GP's office and asked them if I could schedule an EKG, to which they replied "yes!" I do actually have a racing heart at times, so in fact, I was able to answer honestly when they asked me about my symptoms. I had my heart checked out a couple of years ago, via stress test and monitor, and they could find nothing. The symptoms went away, but have returned over the last couple of months but recently, I have been too "other" focused to deal with that, so I guess now is the perfect time.
I agree with you, Keebler, it is a tough call. I have had a Lyme disease conversation with my GP and it was clear to me that he was not on the side of treatment for chronic Lyme.
Personally, I would far rather be clear about my treatment, but have found it challenging to think of a way to re-address it with him.
Now that I have changed LLMD's and will follow a different, and more demanding protocol, I might have to be more open, and I like the way you phrased your suggestion of how to state ones points.. It was easier when I could just visit the LLMD who lived within a reasonable distance of me.
Steve, I appreciate your input, and thanks for reminding me of my "rights." It's easy to go on the defensive with this situation and I am not quite sure that I understand the true, or possible ramifications of being completely up front with the medical profession at large, about being diagnosed and treated for Lyme disease.
It's laughable really, when your own doctor cannot give you a diagnosis, so you take matters into your own hands because what SANE person wouldn't, that you then run the risk of being thought of as having psychological problems!
Posted by steve1906 (Member # 16206) on :
I'm glad you had no problems getting an appointment.
This is not going to change in the near future, Doctors will continue telling all of us we have psychological problems.
I always remind people to be strong from the beginning. DO NOT ever let any Doctor walk all over you and make you look like a foul.
I hope your test turns out negative!
Steve
Posted by WPinVA (Member # 33581) on :
"It's laughable really, when your own doctor cannot give you a diagnosis, so you take matters into your own hands because what SANE person wouldn't, that you then run the risk of being thought of as having psychological problems!"
Nicely put!
Personally, I like the upfront approach. You don't have to go into details upfront, and if it's not well-received, you don't have to say much more. But I don't like to hide relevant medical info from doctors, and I have actually been very pleasantly surprised at how supportive many of them have been.
Of course, one told me how I don't have Lyme and one lectured me on long term abx use. Still, surprisingly, I have had a lot more be supportive than those who were not.
As for the two who were not, one was my old PCP. At least I know where I stood. I have not been back since. I found a new integrative PCP. She is Lyme-friendly and she is wonderful. She has been a wonderful adjunct to my LLMD. They work together - in fact he just called her today to check on something.
So... now that you know how your PCP feels about Lyme, perhaps you want to consider findign someone who will work with you on your medical problems, rather than deny that they exist.
Posted by Keebler (Member # 12673) on :
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