My 15 year old is currently receiving 3x week IV Rocephin. Her heart/chest is pounding so hard that she says it hurts. She has had this for a while but now it’s worse; I think it’s part of a herx. Do I take her to the ER? She insists she doesn’t need to and that she’s “fine.” Or do I take her to a cardiologist? Any advice appreciated.
Posted by hopingandpraying (Member # 9256) on :
I'm so sorry this is happening and sure this is frightening for the both of you. I don't have advice about this, because my son did not do IV abx and I don't recall this specifically happening to him.
Perhaps it is a herx or the medicine itself? Maybe the dosage/frequency needs to be tweaked? I'm not a doctor, just thinking of possibilities.
Have you contacted her LLMD to let him/her know what is going on and to ask what to do? I would do that.
Posted by Bartenderbonnie (Member # 49177) on :
Sorry to hear about your daughter Jlynne
I did a quick search on Lymenet and ALOT of Lyme sufferers have posted about this same exact symptom. Hopefully you will find answers;
Thank you both for replying. I believe it is a herx but I also want to make sure there isn't something worse going on. Is it appropriate to go to a cardiologist while seeing an LLMD? I would assume that I would share her current treatment with the cardiologist? I read way too many horror stories!!!
Posted by Jlynne (Member # 51955) on :
Also- do I need to find a Lyme Literate cardiologist? Is that even possible? Will a regular cardiologist question the IV treatment that my daughter is on? She does have a CDC positive Lyme test...I’m so worried about this whole thing!!!
Posted by MissVictoria (Member # 45232) on :
Yes, go to a cardiologist ASAP
Posted by Rumigirl (Member # 15091) on :
Jlynne,
First I would call her LLMD and make sure the office knows the question is urgent.
If you PM me, I can give you the name of a very Lyme-friendly cardiologist in NY. The only problem is that he is often booked up for a while---unless he got a cancellation or squeezed her in. Actually, I know of 2 Lyme-friendly, or better, cardiologists.
in the meantime, it is possible to go to the ER, although they often are less than helpful with Lyme patients. We tend to be more complicated.
Also, if you do go, I would be wary of giving them your LLMD's info. They are not known to be on our side, as it were, unfortunately. Although 3 weeks is not too long even in the view of Lyme skeptical people.
Do you have a blood-pressure/heart rate cuff? It might be helpful to get one to check her heart rate and BP when she has symptoms. (I'm not saying you should diagnose her yourself, of course)!
In my experience, I often feel like my heart is pounding, but when I check, it is not too fast, and my BP is not high. I don't know if it's arrhythmias or what. I do have PVC's and other arrhythmias.
Lyme can definitely infect and affect the heart (through the nervous system, too).
Posted by Jlynne (Member # 51955) on :
Thank you for the replies. I have an appointment for her at a cardiologist on Wednesday. I was thinking of taking her to her primary doc today-she doesn't know she is in treatment with an LLMD though, so I am sure she'll ask if she's seeing any other doctors. How do I avoid telling someone her LLMDs name if they ask?
She actually stayed home from school today because of this symptom so I am extremely anxious and going to try to get her in to her primary today. I am also calling her LLMD shortly- she is wonderful at taking calls and getting right back to me.
Thanks again.
jlynne
Posted by hopingandpraying (Member # 9256) on :
Ideally, I would take her to a LL cardiologist who understands the disease and its effects on the body.
Why don't you ask your LLMD if she can recommend someone? Poster "Rumigirl" mentioned she has some names of "Lyme-friendly" cardiologists- send her a pm. I know of one LL cardiologist in CT, but she does not treat out-of-state patients.
You many not know how to send a PM (private message). Just click on the the box that says "private message" above someone's post.
I hope that you get good help for your daughter soon. Your LLMD may also have a referral for a Lyme-friendly cardiologist.
Posted by hopingandpraying (Member # 9256) on :
How is your daughter doing? Were you able to get her to someone who understands Lyme and what it does to the human body?
Posted by Lymetoo (Member # 743) on :
If the doctor asks for the name of the LLMD, just say that you will not share that info in order to protect the LLMD.