posted
Evening everyone! Curious to know if anyone else suffers cardiac complications, what they were and what they used to treat them.
I have MVP and tachycardia and I know my heart doesn't beat properly.
Any advice or even sharing of stories is appreciated!! :-)
Posts: 132 | From Central New Jersey | Registered: Feb 2012
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lpkayak
Honored Contributor (10K+ posts)
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posted
many of us do. i have mvp too...and my mom did-she ended up with lyme and had it when she died.
lots of palps too..but when lyme actually attacks the heart it can be very serious...life threatening-it has been written about a lot and if that is you ...you need to be followed by LL cardiologist
you will probably get more replys tomorrow
good to see you! its been lonely here tonight
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
google lyme carditis or lyme heart block or try our search
its at the top of this page under the "post a poll"
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Thank you so much lpkayak! I will do the seeking a doctor thread for a LL cardiologist. I have one now but i'm having more chest pain than usual and i'm out of breath. It comes and goes so I attribute it to this crazy disease. But getting a special cardiologist may be what I need to do. Thanks again and hope you're feeling well!
Jessi :-)
Posts: 132 | From Central New Jersey | Registered: Feb 2012
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lpkayak
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posted
i think there might be one in neptune...i used to live in brick...cant remember name...i think he did a study or something
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I love the towns' names: Neptune; Brick.
Unfamiliar with which state those are in, I just want to say that I feel like I live in (literal) brick and wish I could go to Neptune (far, far away).
Having a Peter Pan moment and want to fly away in the night sky. I worked up the song "I'm Flying" for a college skit lightyears ago so that just came to mind. What a rush that song is! -
Posts: 48021 | From Tree House | Registered: Jul 2007
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ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
I developed heart rhythm problems that got worse after my thyroid suddenly decided to work again, so that I became hyperthyroid. Te rhythm was all over the place and so was my breathing, so I was in a very bad way for a while, very weak, unable to go out, unable to even clean my teeth without causing the symptoms to worsen further.
Because of an error by the cardiologist's department, I was left untreated for a whole year until a doctor detected how haywire the rhythm was, an ECG confirmed it and I was started on the beta blocker Bisoprolol . This drug has been fairly successful in keeping the speed of the heartbeat down.
In my case, food intolerances can make my heart rhythm misbehave., especially if I have sugar, so it might help for you to try an exclusion diet to see if that helps your symptoms.
Posts: 1647 | From UK | Registered: Nov 2008
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I'm chuckling (at least on the inside) as I write this reply, because I was just on the phone with the transtelephonic cardiac monitoring company reporting symptoms that I experienced a few moments ago: I'm wearing a 30-day heart monitor for the second time in a little over a year's time. Ugggh. Hate it.
So, needless to say, I, too, have cardiac issues from tbd. They are dreadful. For me- the heart symptoms have run the gamut. From tachycardia, to atrial arrythmias, to ANS dysfunction, I have what I feel to be a plethora of goodies.
Beta blockers have significantly helped with my tachycardia, and it is now my hope that this current monitoring event might provide answers in the way of relief from my awful arryhthmias.
I have learned that my type of ANS is difficult to treat, and it appears that that dysfunction is the direct cause of my frightening arryhthmia activity. I am trying to remain hopeful, but shudder at the thought of living the rest of my life in such panic-stricken (due to my heart issues) misery.
I never knew what terrifying looked like until my cardiac symptoms escalated.
Is there actually hope for these Lyme-induced cardiac complications, I wonder???
Posts: 315 | From Negative (-) to positive (+) | Registered: Nov 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Q: Is there actually hope for these Lyme-induced cardiac complications, I wonder???
Absolutely. Magnesium & Hawthorne are two excellent things that have turned around the rhythm disruption for me. I could not tolerate any of the Rx but the nutrients have been remarkable. Wish I had known about them years earlier.
Still, each person is unique. Be sure your LLMD &/or LL ND is working to find the best solutions for your body.
Search:
hawthorn, arrhythmia
magnesium, arrhythmia
and see links previously posted in in this thread, too. Magnesium has helped many settle their heart issues.
Find the articles and books of Stephen Sinatra, MD a cardiologist (not a LLMD although he does possess an understanding of the complexities of lyme). -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Oh, and by the way, I took Digoxin for a little while and it darn near killed me. Landed in the ER with severely elevated bp, (i.e. flat ST wave segment).
lpkayak--- thank you for your great insight on the matter. I seem to recall you posting/contributing to similar cardiac conversations before.
ukcarry--- good points re: the thyroid. My cardiologist (now ret.), always suspected that I was having attacks of thyroiditis...which can most definitely Cause an out-of-control elevated hr in patients. People who have the misfirtunr of swinging back and forth from a hypo and then hyper-thyroid state can really be affected, cardiovascularly speaking. It is good to find an endo who understands all facets of the thyroid, and who appreciates its full affect on the body. Above the usual TSH, T3, T4 readings, sometimes tests like reverse T3 and TPO Abs can be very helpful and telling.
Posts: 315 | From Negative (-) to positive (+) | Registered: Nov 2011
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
I had horrible tachycardia and POTS from lyme and co. The minute I stood up my heart rate raced to 120 bpm.
Almost all gone now! Just beats too fast when I'm herxing!
Posts: 1276 | From maryland | Registered: Jan 2009
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posted
Keebler--- thanks so much for your input and good info.! I have long been taking supplemental Magnesium, but my LLMD more recently increased (quite exponentially!) my daily intake. Hopefully in time this WILL help me out!
I surely can look up the information for Hawthorne...but would you mind telling me a little bit about it here, and how perhaps it worked for you?
Thank you!
Posts: 315 | From Negative (-) to positive (+) | Registered: Nov 2011
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lpkayak
Honored Contributor (10K+ posts)
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posted
brick and neptune are in nj---in the middle on the coast-between asbury and pt pleasant
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- lpkayak,
thanks for the geography lesson. My favorite town name: Button Willow, CA -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Lymebulldog,
I posted several links and some personal accounts of how Hawthorne helped me in thread below. I don't have energy to recount all that here, now.
I've not been able to afford it for sometime now and think fondly of how much better I felt with it. The darker syrup was best, very thick and much more effective. Not sure they still make that so the Herb Pharm tincture may be my next choice.
Thinking I need to put that back on my required list as it sure did help with:
calming sensory overload (a great anti-seizure measure for my sound/light triggers), mood, let me get better sleep and also just feel better in general. Just one basic article for starters:
EXERCISE INTOLERANCE is (partially) explained in the article: "when exercise doesn't work out" (and what we can do about that)
MITOCHONDRIA & MYELIN SUPPORT -
Posts: 48021 | From Tree House | Registered: Jul 2007
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Tachycardia for many of us is not really a heart problem but a problem with circulation. The heart starts beating faster to keep the blood circulating. You may have hypotension like so many of us. Since you have tachycardia you should consider being tested for dysautonomia or orthostatic hypotension.
Food allergies can also cause tachycardia and possibly palpitations.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
My husband has ventricular tachycardia. He had to have a pacemaker/defibrillator put in. All this was done before we knew he had Lyme plus coinfections.
I on the other hand have the opposite, bradycardia. My heart rate drops so low I get dizzy.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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posted
Jessi.. just keep on top of it and make sure you have a good doctor. I have MVP, tachycardia and atrial fibrillation. Many joys with the A-fib. (not)
Bulldog.. I did digoxin too and ended up in the ER.
Hope they find something that can help you after doing the 30-day thing. It is indeed a pain in the B!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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posted
Keebler--- awesome, thanks for taking the time to respond with some info. on Hawthorne. I had a feeling that I had heard about it before; in its berry form, I believe. I will definitely have to look into its use!
Really hoping that I do find some relief soon!
How are your cardiac symptoms now, Keebler, as opposed to how they were, say, a few years ago?
Thank you again!
Posts: 315 | From Negative (-) to positive (+) | Registered: Nov 2011
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posted
faithful777--- sorry to hear about your husband. How has he done post-pacemaker insertion? Much better, I hope. I worry...because in addition to all of my other heart symptoms, I do have non-sustained ventricular tachycardia. So afraid that this will materialize into sustained VTach.
I have learned that people with my type of ANS dysfunction don't make good candidates for pacemakers. However, I know that my symptoms this time around (this 30-day monitor), are far more intense than the first 30-day event (which was in '11).
Lymetoo--- thanks for your positive words. I wonder if the Digoxin also caused severely elevated bp, and an exaggerated dysfunction in autonomic nervous system response.
To all those who have posted herein--- did you find a particular antibiotic, or combo of them, especially helpful? If so, what method of delivery (i.e. oral, intramuscular, intravenous) seemed to work best for your heart symptom?
Many thanks, in advance!
Posts: 315 | From Negative (-) to positive (+) | Registered: Nov 2011
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posted
A product called Quercetin + Netttles helped me so much with the heart arrhythmia. I was given it for allergies but it helped the heart problems I was having. But as Keebler said everyone is different.
Posts: 472 | From New Jersey | Registered: Dec 2007
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Wow, my husband uses Quercetin for his severe allergies; specifically to help tackle histamine-related angiodema. He finds that the Quercetin actually works better than his immunotherapy. I appreciate your input, as I would have never thought to have tried the Quercetin myself (under a doctor's supervision, of course).
Are your heart symptoms mostly resolved now, Cockapoo?
Thank you for your response!
Posts: 315 | From Negative (-) to positive (+) | Registered: Nov 2011
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posted
Yes. I had it for 1.5 years. Went to an LL cardiologist in NYC who really seemed more like a Lyme sympathetic cardiologist. He just said to live with it.
I had gone to a regular cardiologist who had me wear the halter and confirmed lots of pvc's. Said to live with it.
I was trying so many things because it was driving me crazy and I was only sleeping a couple of hours a night but when I took the Quercetin + Nettles it went away.
Of course I am not a doctor and I really don't know the mechanism or if it would help you. I hope so. It is so hard to live with.
Posts: 472 | From New Jersey | Registered: Dec 2007
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Active Ingredient The active ingredients in hawthorn are various bioflavonoids. The bioflavonoids which can be derived from hawthorn are: vitexin, quercetin, oligomeric procyanidins, and hyperoxide. These bioflavonoids are said to give the cardiovascular system better health.
Posts: 472 | From New Jersey | Registered: Dec 2007
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posted
My husband started out with non sustained v-tach and they could never catch it on a holter monitor. An EP study did not duplicate the first time, yet he continued to have horrible dizzy spells while driving!!!!
Finally got a good EP doctor who said a pacemaker/defibrillator would save his life and if it was anyone in his family, he would put one in.
Had to do another EP study to satisfy insurance, and it became sustained V-tach during the test. The difibrillator has gone off once since then, but my husband is taking one of the old beta blockers to help with the arrhythmias. The pacemaker does pace him sometimes.
He ended up in the hospital again early November with what we thought was a mild heart attack but it turns out that part of his heart is not squeezing as vigorously as it was on the last cardiac cath.
We just put him on IV Clindamycin trying to head off any more heart damage.
See a good EP doctor to make sure everything is okay.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i have an enlarged heart. not sure if it's from lyme or not. also have irregular heartbeats. goes very fast, then thumps, then goes slow. it will often beat so hard i feel like you put your fist in my chest.
went to a cardio and he said oh no problem, lots of people have that.
yeah, right....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Thank you everyone for sharing your responses and experiences. I truly, truly appreciate it. It helps my sanity! lol
I'm seeing my LLMD on monday and will question him thoroughly on several points and my cardio later this week.
I am though beginning to wonder if my thryroid has gone nuts. I've had high TPO antibodies for a few years and at one time my TSH shot up to 21.76. I felt like absolute death and didn't know it at the time and took synthroid. Within a few months it resolved. I beginning to suspect that again. I will keep everyone posted.
And most importantly, you're all in my prayers. The support and information I receive from this forum far surpasses any gift I could ever hope for and I thank all of you for that. My prayers for happiness and health are with each and every one of you. :-)
Posts: 132 | From Central New Jersey | Registered: Feb 2012
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posted
Cockapoo--- I am really glad that you found something that worked for you. I totally understand what it is like to not sleep well at night due to the arrythmias. I find that this is when they are at their worst; go figure. Thanks for the add'l link on Hawthorn.
faithful--- thanks for sharing your husband's personal account with those scary heart issues. I am glad that the pacemaker has helped him, but am sorry to learn about his recent hiccup in November. Hopefully the IV Clindamycin provides him some additional relief. Orally, it worked well for me (epsecially on my Babs symptoms). This 2nd 30-day monitoring event is actually happening under the watch of a good EP doc; which is a good thing since that I went as far as I could under the help of a very supportive and empathetic cardiologist.
randibear--- if I were you, I wouldn't stop at seeing that dismissive cardiologist. Back in '09, an echo that I had revealed a mildly enlarged left atrium; something that the 1st cardiologist who I saw in '11 said was definitely NOT normal (especially for a woman of my age back in '09). With where I'm at now...I would have never waited so long to get help (had I had someone telling me otherwise). All other doctors brushed this, and similar heart findings, off, however.
Jessig--- I am so glad that you are going to be pursuing your heart-related symptoms. You are probably very much onto something with the thyroid! And thank you very much for your kind words. Please know that I feel the same way. Recently, I added a post to the Forum related to Bicillin which touched upon heart symptoms. I didn't get much of a response, and was actually in the process of readying another post that was more heart-specific. Thanks to your great post, however, I didn't have to. I hope that you don't feel that I "hi-jacked" your original post in any way. Thank you again! Posts: 315 | From Negative (-) to positive (+) | Registered: Nov 2011
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posted
Does anyone have an idea (or story to share about) how long one can experience heart symptoms (e.g., the upper limit, like say, 5 years), and yet still make a full recovery from these issues (following treatment that is multi-dimensional: Lyme, co-infections, parasites, and metals)?
Thanks so much for your input on this!!!
Posts: 315 | From Negative (-) to positive (+) | Registered: Nov 2011
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posted
Anyone have experience with my last question (just above) within this thread? Any input from cardiac issue sufferers would be most appreciated. Thank you all so much!
Posts: 315 | From Negative (-) to positive (+) | Registered: Nov 2011
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posted
Lymebulldog, you could never possibly hijack my post! lol We can only learn from each other. Every little tidbit of information helps from everyone.
To answer your question in my own personal case, i've been suffering the cardiac symptoms for 5 years and I was only diagnosed with lyme 6 months ago.
My cardiologist has tossed around the word "pacemaker" in the past and I cringe because i'm 34. The caridac electrophysiologist I saw recommended an abalation of the sinus node first and if that didn't work, then a pacemaker.
My doc said point blank, no way.
He monitors me and wants to see if we can get the lyme into remission and cos under control if some of it will resolve. Unfortunately we don't know if the damage is permanent because it went undiagnosed for so long.
I'd love to jam the whole "You're depressed, it's in your head" diagnosis I received from so many doctors, down their ignorant throats! Maybe if they were slighty open minded to being further educated I wouldn't be in this position. (Sorry, just venting! lol)
Posts: 132 | From Central New Jersey | Registered: Feb 2012
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posted
Wanted to bring this back up in the hopes that others had more to share (like Jessig did). Specifically looking to find out how long people dealt with tbd-induced cardiac issues, and yet still found symptom resolution following appropriate treatment.
Thank you all so very much!
Posts: 315 | From Negative (-) to positive (+) | Registered: Nov 2011
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posted
We have tried all of the above supplements and none helped. He is having less issues on an old beta blocker and of course the pacemaker/defibrillator.
Got to get the Lyme under control.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
lyme runs in my family i'm positive.
get this--
father, lyme, diabetes, high bp, cancer, died of heart attack mother, lyme, arthritis, diabetes, high bpcongestive heart failure uncle lloyd -- heart attack aunt estes -- heart attack uncle bf -- heart attack uncle claud -- unknown grandmother on dad's side -- stroke father -- unknown
mom's side father -- black lung, enphasima mother -- stroke brother -- now has alzheimer's, other conditions
what a family history.....
so many, but i'm sure lyme was an issue.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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