I'm struggling to find a reason to keep going. My heart symptoms are just so severe, I can't even walk down the street. I walked 200m or so and I was so breathless, heart racing, chest pain, light headed. It beats so hard all the time. I can see my pulse sometimes in my eyes when I sit down. I always burp, too, when my heart is going crazy. Not sure why.
Having a shower is the hardest task, even drying my hair or brushing my teeth makes my heart race out of control.
I've been to ER 5 x with severe heart attack like symptoms, to be told I'm fine after tests, so I don't bother going anymore, I just sit it out, but I'm just really finding this hard to keep going.
I don't know how this would ever get better? It feels as bad as it could get. Does it get better with treatment? I can't see it...but I'm going to turn that around in to a "can".
I just need reassurance, I'm alone and losing friends over this because they think I'm crazy and it's breaking me.
Posted by littlebit27 (Member # 24477) on :
It will get better with the right treatment but it does take time.
I understand what you are going through as far as symtpoms, I have the same kind, as well as heart attack symptoms. Went to the ER once told everything was normal so I would go back again, God willing it won't REALLY be a heart attack next time, lol.
This will get better. I have days where I'm just like screw it, forget it, I'm done with this. But then I know I have to get better for my family (my kids and husband-my mother still thinks I'm coo-coo)
Hope you feel better soon!
Posted by Carol in PA (Member # 5338) on :
Are you taking supplemental magnesium?
Lyme causes low magnesium, which causes many symptoms, including cardiac problems.
The only thing abnormal on my labs from today was my RDW-SD and RDW-CV count - the red blood cell width. It says it is lower than normal.
Would this be Lyme related? I have this come up on my blood tests every time since I've been sick...
Thanks for your responses.
Posted by bcb1200 (Member # 25745) on :
I had bad tachycardia before I started treatment. >180 BPM just taking a shower!
It's normal now after 6 months of soaking myself in antibiotics.
Posted by sixgoofykids (Member # 11141) on :
Are you being treated for babesia? Babs caused those symptoms for me. Yes, they went away ... and most of the time I kinda hoped I was having a heart attack because I was sooooo sick back then.
Posted by feelfit (Member # 12770) on :
Hey There Sian,
This illness gets into our nervous system. The symptoms that you're experiencing are probably a result of POTS or Dysautonomia....rather than a functional problem with your heart.
In other words, faulty wiring or signals from your nervous system are causing this.
I have had your symptoms to a 'T" right down to the burping (still have a problem with that). The gut affects the heart....Your autonomic nervous system is probably out of whack.
Google ANSAR testing...or Dr. Joseph Colombo for more information.
While any functional problem with your heart needs to be ruled out, I'm betting that your heart symptoms are a result of autonomic dysfunction.
Dr. Columbo suggests that the ANS can often be reset with low dose elavil (10-12.5 mg) and an old beta-blocker (coreg).
My heart problems seem to have gotten MUCH better after treating babesia.
Good Luck, stay strong!
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by sian333:
The only thing abnormal on my labs from today was my RDW-SD and RDW-CV count - the red blood cell width. It says it is lower than normal.
I agree with Six... could very well be babesia. You need different meds to cure babesia.
Go to the above link and click on Lyme and Coinfections Symptoms. Then scroll down till you see the symptoms list for babesia. See if it fits.
Posted by missing (Member # 22437) on :
I had the same thing too!
It went away!
Those were one of the first symptoms to resolve.
I think they went away when I started treatment with meds for Babesia.
Make sure you get lots of rest.
Posted by LymeAware (Member # 26195) on :
Yes, I would look into babesia. Babesia affects your red blood cells.
It will get better. You just need to get the right treatment. Keep faith and don't give up. Be gentle with yourself. Do you have a good LLMD supporting you?
One thing I would suggest in the interim is really look at the activities you are doing and find ways to be very gentle with yourself. Try to prevent things from getting to the point where your heart is struggling so hard.
I know this very hard when everything affects the heart. But, for me I found I had to look at the things I was doing and whether they were truly necessary, or just based on my idea of what I felt I "should" be doing. The fact is you have a disease that makes activity difficult, and possibly dangerous at times.
Using a shower chair has made a big difference for me -- still very difficult, but easier than before. Showering was one of my most difficult activities as well. What can you do sitting down to make things easier on your heart.
Good luck.
Posted by seibertneurolyme (Member # 6416) on :
Also need to rule out Bartonella as the cause. Hubby had PVC's and PAC's which have now gone away with bart treatment.
Would also suggest adding taurine and CoQ10 supplements to support the heart.
Bea Seibert
Posted by Carol in PA (Member # 5338) on :
quote: Originally posted by sian333: My labs say my magnesium is normal.
The regular labs tests for magnesium are not so accurate, as they test for mag in the blood, not in the muscle and nerve cells.
Try supplemental magnesium and see if the symptoms reduce.
Look at the list of ingredients, and don't just buy the cheapest, which is probably magnesium oxide. This form of mag is poorly absorbed, although it can help some.
Carol
Posted by sian333 (Member # 26198) on :
Thanks so much for your responses.
I appreciate it!
I will definitely look into Magnesium then, thanks very much Carol in PA. Can you have too much Magnesium? Or is it filtered out?
It's funny you say Babesia, because my Doctor said my symptoms sound very much like Malaria, except that I haven't been anywhere with Malaria. I know Babesia is similar to Malaria in ways.
What would be the best meds to treat Babesia? I have a doctor who gives me any script I want while I'm waiting to see a special doctor. I'm lucky with that.
Posted by lou (Member # 81) on :
The standard treatment for babesia now is zithromax and mepron, used to be clindamycin and quinine. However, other people have used lariam, artemesinin in a combo, primaquine, chloroquin, coartem, and malarone.
Not sure which of these you have available in Australia. How long will you have to wait until you see the specialist? That might determine whether you want to start babesia treatment without a specialist to guide it. Some of these meds can have side effects.
Posted by sian333 (Member # 26198) on :
I'm been given Zed 500mg tablets..as in Azithromycin. Is that the same as Zithromax?
(Different names here in Australia so I'm not too sure what's what)
Do you know what kind of side affects Zithro gives? And will I herx fairly soon after taking it?
Thanx again for your time and help, much apprecaited.
Posted by lou (Member # 81) on :
Yes, that is the same. And it works for some people with lyme, but probably not good as a monotherapy for babesia.
Hard to say whether you will have a herx, or when. There is a great deal of variation in treatment response.
Read the package insert for side effects, or google it online.
If it would be a long time before you see your specialist, maybe you could ask for an antimalarial to combine with the zithro, such as malarone which comes in pill form.
Some people think coartem treatment might be better, and less expensive than mepron (a very expensive liquid). It is called riamet in Australia, I think. But aren't Australians more acquainted with malaria treatment, with the proximity to Asia?
Posted by groovy2 (Member # 6304) on :
Hi All -
Heart palps -wacky heart beat -racing pulse- vision pulsing - rib cage pain - are all symptoms of babs and maybe Bart -
My vision would pulse so much it was like being back in the 1970s at a Disco -
I bet I have read a 100 posts about people thinking they were having a heart attack - then going to the doc and them telling them no problem --
Another common symptom is dull and sharp chest pain usually on the left side - sometimes get worse at night -
Usually it is because the cartilage between rib cage is inflamed -- Its scary and painful-
Babs caused All of these symptoms for me -
These symptoms will go away with treatment - it dose take a while tho --Jay--
Posted by Keebler (Member # 12673) on :
Topic: To everyone with CARDIAC symptoms please read ! -
Posted by sian333 (Member # 26198) on :
Thanks again everyone. I'm lucky to have found this forum!
I read that Zithro can prolong the QT interval and I'm absolutely petrified now. I already have severe heart symptoms, and I'm needless to say, absolutely freaking out about taking something that says it can prolong QT.
Does anyone know about this?
I don't have Long QT Syndrome or anything, my QT interval is normal, but still, I am nervous.
Posted by Keebler (Member # 12673) on :
- Untreated lyme is worse than anything. There are ways to work with QT. The Cardiac thread has many good support suggestions.
Magnesium is number one. -
Posted by Haley (Member # 22008) on :
I don't remember where I read this but I remember reading that Babesia can affect the RDW (the width of the cell). This was one test that was given to see if a person had Babesia.
Gosh - I remember having those symptoms in the very beginning of treatment. I went to the ER 4 nights in a row. This was also the time that I was just finding out that I had Lyme.
Hang in there.
Posted by sian333 (Member # 26198) on :
Thank you so much.
I wonder how Babesia can make the red blood cell smaller, it really is interesting, yet horrible!
If anyone knows, I'd love to hear. : ]
Thanks again for all of your replies.
Much love and well wishes <3
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Haley: I don't remember where I read this but I remember reading that Babesia can affect the RDW (the width of the cell). This was one test that was given to see if a person had Babesia.
Yes. I'm pretty sure that is right. That is why I quoted sian's test result above and mentioned looking into BABESIA.
sian... Babesia is a parasitic infection of the blood. It is similar to malaria.
Posted by Carol in PA (Member # 5338) on :
quote:Originally posted by sian333: I wonder how Babesia can make the red blood cell smaller, it really is interesting, yet horrible!
It's not that the Babesia actually change the size of the red cells, it's that it destroys the red cells and the bone marrow must make more of them quickly.
The new ones that are made are not of the same quality. You end up being anemic.
Carol
Posted by sian333 (Member # 26198) on :
That makes perfect sense, thanks everyone for taking the time to explain it for me. I appreciate it alot!
Much love and well wishes.
Posted by Dawn in VA (Member # 9693) on :
Just a note on the Zith...
I don't do well with it orally (have yet to try IV)- it gives me palps BUT, strangely, I have been and continue to do fine with Biaxin (clarithromycin), which is in the same class. Biaxin also makes me herx like a banchi, whereas the Zith only kicked butt so-so.
Posted by SmurfyMom (Member # 13688) on :
I have had all those heart symptoms for years. I used to think that I must have some sort of congenital heart 'problem' and that it would kill me before I reached 40. Actually I was scared it would kill me before 25!
Several times I have had acute heart attack symptoms. I would not be the least bit surprised to find out I actually WAS having small heart attacks.
I did go to the ER once. Only once, though, because the dr basically called me a hypochondriac fool and laughed in my face. He couldn't see a single reason to be concerned about blood clots or heart problems since I was only 26...despite my symptoms. That was when I'd had 'pudding blood' for about 3wks. I took one aspirin and in 5min my heart was racing and pounding so bad I KNEW.. for sure... no question... something was wrong.
I have had hundreds of times I COULD have gone to the ER with heart problems, but doubt I ever will again. At least not before 55 or 60yr! Maybe then someone will actually take me seriously.
That night in the ER, they took blood and ran some sort of test (prob nothing more than a CBC) and then the guy told me it was an anxiety attack and gave me a prescription for some anxiety med. He didn't care that I had no history that would indicate anxiety. He said "there's a first time for everything". Grrr
My heart symptoms HAVE improved over the last 2 years of antibiotic treatment, though, thank goodness! Not gone completely, but much better overall. And at least now I know what the problem is... babesia and/or bart (I've heard "Bart loves the heart"). I'm not so terrified that my heart is going to kill me before I make it to 40 anymore, either. Course that could be because I made it all the way through my 20s despite the BAD symptoms! LOL Almost 32yr now, and feel much more confident knowing that the infections are getting knocked down at least somewhat!
Posted by we'll win (Member # 11112) on :
I have gone to or been on the way to the emergency room a few times thinking I might be having a heart attack. This especially happened when Lyme hit me bad and I was undertreated.
Since being on heavy duty antibiotic regimens, such as intravenous cephtriaxone, intramuscular (shots) cephtriaxone, intramuscular bicillin-LA (shots), mepron, all types of orals, over the years, my chest symptoms have largely gone away. (uh, oh, I am tempting the evil eye).
When you say you are on Zith, is that the only antibiotic you are on? Or is that just for Bab.?
Hang in there. We care about you. It will take time. But you have to be on heavy duty antibiotic regimens. If doctors won't prescribe in Australia, you're going to have to hop the pond (do it with a plane, until you're stronger- Lyme humor- I think?)
I think the gold standard for antibiotics is brand name Rocephin (ceftriaxone).
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