posted
I keep hearing most people who die from lyme is because of the heart.
I am reading the posts of all who have been lost.
I am wondering...the truth is, we don't really know the best way to treat this disease yet. Does any one agree?
So, if I feel an extra volume in my heart. Increasing heart palpitations. Racking chest pain. Does that mean this is in my heart and the fact that I feel closer to death means I really might be? I just tried to clean my bedroom and had to stop just after 20 minutes for my heart to rest.
I am doing cardio testing Monday.
Does anyone think these antibiotics might actually cause the heart to get worse? Does anyone think it is a possibliity?
posted
When I went back east for a consult with an ilads board member, i asked if i was going to die from this disease. She said that most people die from suicide, and the next appears to be if the spirochetes are messing with your heart. She said the # of deaths is very low, most people improve. But i wonder how many people die with official dx of ALS, MS, alzheimers etc. when they also have or really had lyme ...
I asked her if there was evidence it was in my heart and she said no. I don't know what the heart symptoms would be. So I am sorry I can't help you there. But I am wishin you good luck.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Hey Turtle, those sure sound like babesia symptoms to me. Chest pain and cardio palps are pretty common with babs.
Sometimes the Bb of lyme can lay across the nerve that routes the expansion of your chest and cause a lot of pain as well.
One can also get lyme induced paricarditis, or a swelling of the sac that surrounds the heart which is painful as well. Abx will eventually clear it and mepron/artemisinin will take care of the babs.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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I'm pretty sure it is from the babs as NP40 stated.
I've just started my babs treatment and the chest pain, chest pressure, shortness of breath, palps have increased.
I did have a full cardio workup prior to being diagnosed w/ this tick soup I've got brewing indside of me.
The doc put on meds (toporal) because of the brac/tach and HBP. Bless him, he kept trying to figure out what the heck was going on.
When I saw him after I was diagnosed and told him LD, he said it all makes sense now. Funny when I first saw him I was a mess, kept passing out ect.He was asking if my husband or I have been traveling. He thought it was a malaria like illness. Yikes how right he was!
Make sure the doc does all appropriate testing. Mine had me wear a heart monitor for a month to record all events.
Let us know how it went you get back, ok?
Stella Marie
-------------------- Stella Marie Posts: 694 | From US | Registered: Apr 2005
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posted
I'm not even actually going to be seeing the dr. He's booked til October.
He had ordered a stress test and echocardiogram back in December. (His sister did have lyme, but I don't know if she is/was chronic).
So since my heart is definitely getting WORSE as I am being in this treatment, I decided to follow through with the tests. Because before, I was tired of tests and thought well, theire not gonna find anything anyway. But I have been feeling especially unwell and there is definitely something going on in my heart. So the dr. will call me if he sees anything on the tests. My concern is, he is so busy he won't really look very well.
Is it babs? Well, I don't really know. All I know is I don't feel good. And on top of it, my friggin' jaw bone/teeth are a constant source of pain, just as one more thing no one can help me with.
Don't mean to be complaining, but am so tired and unsure that the antibtiotics are actually going to help me because after 9 months, I'm really not that much better, a little better, but worse in so many other ways.
henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
Hi Painted Turtle,
You sound just like me!
Increased heart palps, skipped beats so often that it makes me SO fatigued, it interferes w. sleep, and racking chest pain.
I had gotten better!!! I have been unable to tolerate abx for the past 4-5 months, so I'm currently off treatment.
I just do not understand this.
I, too, am having an Echocardiogram on Monday, originally to see if I need abx before dental procedures. Now I'm hoping it will at least show the skipped beats so my PCP does not say it is "stress" or "you're conscious of your heart beats."
Why do they say that? Because they don't know what else to say?
My LLMD is currently unavailable, but I will get to follow up before too long.
I have heard that if Lyme is going to hurt the heart, it comes in the form of a heart block. Do I have that right?
Sometimes I do think there is something wrong, it hurts so much and the beats feel so labored. But my (non LL) PCP keeps telling me they will subside, and that they are harmless.
I have tested negative repeatedly for Babs, but I am interested in hearing that Babs can cause this. I have the nerve inflammation around the rib cage from Bb, but this degree of skipped beats is new.
No fun. I confess to becoming scared I will never get better. Trying to remain positive and keep taking steps forward to try new things/ get new opinions.
Hang in there until the tests, ok? Healing and encouraging thoughts. There HAS to be another side!
Posts: 1067 | From East Coast | Registered: Dec 2000
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
My heart experience: When the lyme first hit me (after a steroid shot to the knee activated latent lyme in my body) I had dizziness for 2 days, followed by 45 minute tachycardia, followed by 30 hours of extreme fatigue (read: I could not move).
Had an EKG, echo and 24 hr halter monitor. All normal.
Had more tachycardia as the year wore on. Ended up with chest pressure (felt like a ton of bricks was on my chest) and also stabbing pains.
I had gone from an intense athlete, to not being able to stand for songs at church.
Figured out it was lyme disease. Had another cardio appt to see if it had damaged my heart. I now had mitral valve prolapse (mild).
Had to go off antibiotics for a time due to C. diff and fungal infection in the picc line. When I started IM bicillin, ended up in the ER for 5 hours with tachycardia. The ER doc was NOT happy with my heart and how it was behaving.
I told him I had lyme, and this was my herx reaction to the IM bicillin.
The lyme is definitely in my heart. Last month, for 2 weeks, my heart was really acting weird. Now, it's more normal.
Maybe, someday, it will be well.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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It could be lyme/babesia, but I am just not sure about how I can heal it.
In addition, there is a sense of extra volume in my heart, also get that in my head, maybe that's my way to describe inflammation.
Constriction of breath and the intense pain also is in my back where lungs are so and with a dry cough, I don't know, my NP says babesia, but I never would have thunk it.
Definitely all about the nerves too.
Thanks again for sharing and encouragement, feeling a little better about it now. What can we do? Just find a way to live with it and let go of who we once were.
Hope to see the other side. (no, I don't mean the other other side just yet), but I mean get to that light at the end of the tunnel, still earthbound so we can live good.
I'll report on what is said. I have a murmur, but who knows now.
groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Turtle
Babs gave me the crazy heart beat-- Do you have night sweats?--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
Painted
I am repeating your words; my spirit needed them.
What can we do? Just find a way to live with it and let go of who we once were.
Hope to see the other side. (no, I don't mean the other other side just yet), but I mean get to that light at the end of the tunnel, still earthbound so we can live good.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
Hey Painted Turtle,
We both have our Echo-cardiograms today.
I'll be hoping that yours shows something useful that will lead to answers (but not anything awful either!)
Warmest good wishes
PS Do your ribs hurt when they use the ultrasound wand? I always have to warn them, I might cry, my ribs hurt. It's not their fault.
Good luck - thinking about you
Posts: 1067 | From East Coast | Registered: Dec 2000
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posted
I have had numerous mild problems with my heart in the past. THere are phantom stabbing pains that come and go, chest pressure, etc. I had a stress echo done back in March. The only two things wrong were a slightly dilated left atrial size and mild MVP. The doc told me those two go hand in hand esp. with slightly high bp.
I asked him about the MVP and if would get worse. He didn't seem too concerned. He told me more people have MVP than there are red heads in the US. Something like 8% of the people he claims. I don't know if that was reassuring or not. All I could think of was "yeah that sounds about right 8% of the people with Lyme." That was just my Lyme brain and its conspiracy theories.
Posts: 649 | From United States | Registered: Dec 2003
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johnnyb
Frequent Contributor (1K+ posts)
Member # 7645
posted
Hi Painted. Long time no speak. I haven't been on the boards in a long time, but I remember you since you have similar heart complaints to me. Hope everything goes well with the test.
I've had every heart test save for the cath (since all other tests indicate no blockages at all), and they just scratch their heads.
Low DLCO (diffusion) on a lung test is an abnormal finding (did they test you for this?), as well as crossing over the anaerobic threshold and acidosis at peak exercise on a cardio-pulmonary stress test.
What does this all mean? They don't know! Nuclear stress test, echocardiogram, calcium scan, high-speed scan of arteries with contrast- all look good.
Yet blood pressure is frequently too low, and sometimes too high, and SP02 swings around from 94-100 (usually 96-98) on the finger meter.
They don't know what to do with me.
So I feel your pain. It is all SO frustrating, and I hope that they will figure it all out for you. I am currently living a sort of half-life, thinking I might be close to death, as you say. It really sucks. Hope things get better for you.
- JB
Posts: 1197 | From New Jersey | Registered: Jul 2005
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posted
Well, what a long day at cardiologist. The Titanic was on the TV in the waiting room, you think that's symbolic that I'm sinking???
Yes Hensen! The costochondritis point, the nerve point there hurt when the wand touched it.
I did a nuclear stress test. They put radiation in me. JohnnyB, come to read your post, I wonder why he ordered that and not a pulmonary one?? Hmmmm....don't know. It's babesia and lyme, so just need to be sure the heart is technically okay.
What a muscle! I sat there watching it thinking how boring it would be to be a heart just pumping like that all the time without stopping! Then I wondered about the heart and all that is said about what it is.....
At the end they tried to put a 24 hour Halter monitor on me. When they tried to turn it on the machine said, "No working memory or memory not responding" I was like....duh!
Crashed when I got home. Drinking detox tea now and sweating it out.
quote:Originally posted by painted turtle: It could be lyme/babesia, but I am just not sure about how I can heal it.
You treat it with babesia meds. That should do the trick! Glad your test went OK. Did they say when you'd get the results?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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johnnyb
Frequent Contributor (1K+ posts)
Member # 7645
posted
Hi Painted. As I understand it, the nuclear stress test checks to see if you are getting adequate blood flow to the heart, and from that they deduce if you have any significant arterial blockages.
The cardiopulmonary stress test checks the efficiency of your heart as a pump, as well as your lung function.
I really never knew what the difference was between the two until the technician explained it to me. They check different things, although the exercise portion of your nuclear stress test checks your heart's function as well.
Exercise plays an important part in both tests.
I've had numerous holter monitors before. Never showed anything.
Keep me posted. Oh, and stay away from babies and pregnant women for a day (no baby-making during that time, either) due to the radioactivity.
You had a busy day so get some REST!
- JB
Posts: 1197 | From New Jersey | Registered: Jul 2005
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henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
Hi Painted Turtle,
I thought of you during my test.
YES, the wand goes "right there", at the costo-chondral junction -- I wanted to say, "THAT'S where the pain is."
I'm so interested to hear that the pain is the same place on you, too.
Actually, (weirdly) the cool gel and the very gentle pressure felt good on the chondral pain while they did it. I told them ahead of time it hurt, and the technician promised to be careful. It felt like cool, "good pain." Only it was sore afterwards.
This chest pain is just the pits!
I should get my results on Thursday when I see my PCP.
The technicians never say anything. I could definitely feel the skipped beats -- the ones my PCP keeps telling me are harmless. I find them to be very uncomfortable and fatiguing.
I didn't have any other cardio tests today, just that one.
Let me know how things turn out, ok? I'm sending healing thoughts to you! Posts: 1067 | From East Coast | Registered: Dec 2000
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Nothing ever turned up on my son's heart tests either, it's pretty common with lymies. Sometimes, those afflicted with long-term lyme without proper treatment can go on to develop some heart symptoms.
More than likely from the posts I've read in this thread it seems more babesia related. Heart palps, murmurs, skips, pulse going up and down, chest pain, heavy breathing, etc. are commonly related to babesia. The good news is once the doc starts the zith/mepron/artemisinin all of these things clear up.
Have any of you on this thread with these heart symptoms talked to your doc's about babs treatment ?
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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quote:Originally posted by tabers: I guess I have babs and should treat. =========If it is babs then it would mean that it could get better with treatment?
YES!!!!!!
You didn't have an echo recently??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
"Whats wrong with them all? Are they afraid to question the lyme tests?"
They do not know anything about lyme/borreliosis since probably all they read is Wormer in the NEJM and it appears they judge recovery by disappearance of the em, since that is their focus/single diagnostic criteria.
Re: the clavicle pain : this could be clogged lymph ducts, as the upper left quandrant is the main body drainage area. I had pain in that area, was scared, saw my chiro/ND, who used a mini-jackhammer on it ....voila!......pain gone.
N.
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hey Painted Turtle
Glad to hear you are having some heart tests on monday.
Make sure to ask for an echo like lymetoo was asking.
If it is lyme don't be surprised if everything comes back noraml. I had an echo, holter monitor and other tests as well. All normal except when I went to ER durning an epiosode it showed up on an EKG as a heart skip.
My lyme & babs treatments have cleared it up for now.
But better to be safe than sorry and have all the tests done anyway.
Hang in there and good luck on monday.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
Hi Painted Turtle (love your name )
I understand that the nerve that wraps around the rib cage that makes the chest so painful can indeed make the back hurt, too.
At the pain clinic, they always asked me if the nerve hurt in my back, too. (Sometimes it did and sometimes it didn't).
When they did the nerve blocks for this pain, they talked about doing it in the back (but decided it was too close to the spine and thus did it into my ribs and sternum. BTW, be cautious about nerve block injections, it made my pain worse!)
I'm not a Dr. though, so I would of course follow up with all cardio tests to rule out anything that needs to be watched and/or fixed.
Just wanted to send you some reassurance that from my limited knowledge this can also be nerve pain in the back. But be safe, ok?? Definitely get checked out!
We are having thunderstorms on the 4th.
Great excuse to rest up, find a teddy bear. LOL
Sending warmest good wishes and healing thoughts to you!
Posts: 1067 | From East Coast | Registered: Dec 2000
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posted
Hi Henson...we are having scattered showers. Perfect day to little by little feng shui my apartment. Every little bit helps. Got a little ivy plant for my desk.
Tabers,
I am not sure how much sicker I could be and don't really want to know!
I thought the same thing you did about the babesia but that is what LLNP thinks. Personally, I feel more like I have Bartonella.
But my first bite was mid to late 70's in MA. The chest lung stuff didn't show up til early 90's. Could have gotten bitten more but not remember. Memory/processing stuff started slowly then too. Just like Andie said it once, I stopped being able to recall words to songs. Although growing up...I always had difficulty actually learning things.
Just thougt I was getting stupider. Even though in college, which was before this time, I was able to memorize my lines for plays pretty well. And write very well too. I miss that the most, the writing! Stopped acting because of the zero endurance and some other things.
But it kept progressing to the point I couldn't read or function and didn't at times recognize myself in the mirror. At the apex, it was so very freaky.
That's why when I relapse in the brain area, I get discouraged.
Got a lot more bits about 3 years ago but not tics... well, maybe tics. Lots of rash, jeez, come to think of it, maybe even a bulls eye one. Mosquitoes, chiggers, etc.
The insanity started around then. My brain was entirely closing in on itself it was horrendous and I lived sleeping with my head on ice for two years (not every night!) before i was lucky enough to meet my diagnosis.
Which then, had to process and sink in. Getting a better handle on the length of it and the possibility some of my stuff is autoimmune now.
Just don't want Alzheimers!! Which I very much feel I already have.
But back to the heart....I'm just hoping it is just the lyme stuff (which is more than enough)....and not turned to some worsening into heart block.
The doctor would need to know that Bb contains a PKC INhibitor, takes the nutrients we need to make acetylcholine, and causes acidosis, oxidative stress. Bb is also "H2O2" resistant thanks to SOD. In other words, he/she would really have to be up to speed on the genetic and current research to evaluate the potential benefits-potential harm of this drug.
Just wondering...
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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I sometimes had increased heart symptoms when I was herxing.
I think that symptoms increase whenever the bacteria get stirred up and forced out of hiding. When they get stirred up and forced out of hiding in the heart, they cause more heart symptoms before they die off.
It is important to be monitored though. Because things intensify with herxes, herxing can be dangerous, too, even though it is part of the process of getting better.
Farah
Posts: 208 | From New Mexico | Registered: Dec 2005
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quote:Originally posted by painted turtle: Lyme Too,
Did you have babesia treated?? If so, how long?
Sorry...just now saw this. I was treated over a period of about 4yrs. Took the meds, thought it was knocked out....it would come back...take the meds again....etc.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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quote:Originally posted by tabers: Seems babs would not be something that someone has had for 30 years.
I thought most co-infections were really just associated with lyme that people haven't had that long. Lyme over 30 years old would be less likely to have co-infections right?
WEll... I don't know. I believe I've had Lyme/babesia for 47 yrs. I hadn't even SEEN a tick for the past 26 yrs.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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