LymeNet Flash: Normal or Not

This is topic Normal or Not - herx or danger? in forum Medical Questions at LymeNet Flash.

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Posted by Naomi Anna (Member # 43076) on :

Hi folks, [hi]

its been a while since I posted.
I'm currently on my 3month of treatment ( biaxin, valtrex and flagyl) and I'm starting to feel really really weird. Different than the first 2 months on this protocol.
My heart had just started a lot of palpitations and flip flopping in my chest about 4 mos. b4 treatment, but since treatment issues w/ my heart have gotten progressively worse.
My heart races throughout the day esp.when I'm fatigued... Worse at night. It gets so it makes me have coughing spells & can't catch my breath.
My resting heart rate is has been very high for me.
Have always had athletes low hr and low Bp.
Bp still low around 90/60. But now my hr is between 80-120.. Normal for a woman of my age is 60-80.
Several times its been so high even when I'm laying there doing nothing- watching a movie that I start to go black, see stars, feel like I'm falling backwards.
Now I'm used to the herx, the pain and all the gazillion's of symptoms that come w/ Lyme and the herx die off reaction.
But my heart is something I don't want to play with and I don't know If its normal for the rate to be this high cause my body's fighting an infection, the chemicals (meds) are hard on my heart, I may have Lyme Carditis ( when you have late stage lyme- systemic),possible heart block etcetera....Or all of the above.
So doc says I need to see a cardiologist. But you know w/ ins and approval how long that will take.
Sometimes it gets so bad I can't feel my hands, face, I feel really weak, my limbs/ my bones in legs, arms & hand, feel like hot noodles inside, like I will collapse and sometimesde.
No strength.... A lot of hot inside the bones feeling. I get so dizzy and unbalanced, I even feel like I'm falling backwards when I'm in a lying laying or when getting up.
Basically what I want to know is, when should I go to the ER? I mean WHAT do they REALLY know about Lyme, herx and the heart.
I'm afraid I'll waste my time and sit and be sent home with nothing.
I don't know if I should wait the 6 -8 weeks it may take to get to see a cardiologist and even longer for tests.
If I went and told them all my symptoms, they might just look at me like I'm crazy.
(after being undiagnosed for so long I dread telling the story again and being brushed off, taken for a kook, or just because they don't have the cutting edge knowledge LLMDs do. Most docs don't take Lyme seriously & we know more about it than they do) I know ya'll feel me here [bonk]

I spoke to my pharmacist & nurse, for advice on ER, doc said even though my resting heart rate is high, esp.compared to my norm, that they don't take is serious in ER unless its over 140. But I'm blacking out / seeing stars at 100 and up....
so I kinda feel powerless.
My LLMD is so expensive I can't afford another appt.right now. Just had one last week. Told me to see neurologist & cardiologist.
should I wait or should I go to ER?
I'm a relatively Young woman, but even so I read that women having an elevated hr between 80-100 makes you like 80% chance of getting heart attack or heart disease.
I don't want to jump the gun, if this is just part of the herx. But I don't want to be foolish and end up waiting and it getting into deeper trouble deeper damage w/ my heart.
I want to walk away from treatment one day in vibrant health, not with a bum ticker [tsk]

Sometimes its hard to tell when it's the herx or its time to go to the Er....
all experience, strength and hope appreciated.
love you guys
disease is a ***** , I do my best to stay positive but this disease is a *****

Posted by dbpei (Member # 33574) on :

When I got worried about lyme carditis, I let my PCP know. I told him that I was having some strange spells in the middle of yoga moves (which I was) of feeling like I might faint. My limbs would go numb, I would get dizzy and my tinnitus would go all silent (yay!) but I think it was because the blood was not circulating and going through my brain the way it is supposed to.

My resting heart rate was also higher than it should be (still is) and my BP was often on the low side. I have learned that when your BP is low, your heart rate increases. This is nature's way of making sure that the blood is circulating through your body the way it should. I am pretty sure these types of symptoms are related to Lyme and a disorder of the autonomic nervous system (POTS).

My PCP arranged for me to have a heart holter monitor placed for 24 hours by a cardiologist. I was able to reproduce the episode of presyncope (that feeling I had during yoga moves) at which time my heart rate went way up. But it came down pretty quickly and remained steady after that.

Not one arythmia showed up in 24 hours! The cardiologist said this was very rare (in a good way) and said I should not worry - that my heart was healthy. I still don't know for sure if this is the case, but it did give me some peace of mind to hear this.

Hope this helps! Perhaps you could also talk to your PCP and see if you could have the same testing done...

Posted by KH111 (Member # 25829) on :

You may want to be sure you are taking magnesium and potassium supplements. Do not take extra potassium, just one pill every couple of days. Or eat a banana once a day. I had this many years ago and I found the above really helped. I went to a cardiologist and did the whole heart monitor, stress test, and cardiogram. Nothing. I think it is also stress and anxiety. But if it does not improve with your abx lyme treatment then you should go to a specialist.

Posted by Naomi Anna (Member # 43076) on :

Thanks everyone!

Posted by Ellen101 (Member # 35432) on :

You really need to get this checked out. As others have suggested, you should speak with your PCP. I understand where you are coming from with the fees to go back to your LLMD. Your PCP should be able to arrange testing/monitoring to make sure your heart is ok.

Posted by LisaK (Member # 41384) on :

I had similar symptoms and every time I went to the dr or had tests nothing showed up!

It got worse recently when I finished treating for bart, but I think it may have been my rmsf acting up?

I found a new cardio dr- one that knows way more about lyme. just got lucky finding him. He put me on a 21 day monitor! and it is anoying but he understood the fact that one day I 'd have one blip and another I'd have 1000.

have you checked with your local hospital? mine is a non profit and they have a reduced care cost plan that gives me 92% off of my bills. Then my church helps me pay for the rest . I hate begging, but beg I must.

you don't always get the best drs this way either, but at least it's something.

As I went through all my treatments this past year I have definitely seen a huge improvement iwth the symptoms you are describing. so, maybe you will get better with treatment also.

Posted by Naomi Anna (Member # 43076) on :

You guys are all so wonderful! Thank you for all your feed back.
Have any of you gone to Er for heart symptoms and if so did they do any tests?
you guys are so helpful , thank you!!
It means the world to me to be able to reach out to you💖

Posted by opus2828 (Member # 15407) on :

I have POTS and when I was first diagnosed with it my resting heart rate and standing heart rate was very high. Once I did go to the ER because it wouldn't calm down. It was in the 120s laying down and 160s standing up. They didn't do anything for six hours and it finally dropped to the 90s. No tests because EKG was sinus tachy. That is when I started a low dose beta blocker that I got from an EP cardio. Feel free to PM me if I can help you.

Posted by Naomi Anna (Member # 43076) on :

Thank you Opus! I appreciate your experience.😍

Posted by Kbone (Member # 43682) on :

I have a "flutter" and it scares me. It happens mostly when I am lying down just before I doze off. Almost feels like butterflies all over my chest and my heart starts racing.

Saw the lyme doc today and she said this is normal and she sees these kind of things in alot of her patients.

Hopefully now that my mind knows this I will sleep better tonight [Wink]

Posted by Naomi Anna (Member # 43076) on :

thanks a lot , it feels anything but normal.. But when these new symptoms pop up it's scary -then we get used to them and it's kinda like what ever....
its a handful , this lyme thing.
Gosh,
every single system an the body,,, WOW