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Posted 6/13/2012 11:37 PM (GMT 0)
Hello everyone. I am new to this forum and just joined. I have been battling Lyme and related disorders over a couple decades. I have a very long story like most folks of history of known tick bite, long delay in diagnosis and treatment. Months of IV abx....travel to LLMDs in a few states, etc. So much out of pocket spent besides insurance that I am not in the great financial shape I once enjoyed. So going out of state for treatment is no longer a viable option for me.

My current issue is damage done to the cardiac electrical system. And how to best live with it. I have a cardiologist who is supportive but offers no cure for misfiring heart fuseboxes that produce irregular heartbeats. He said at this point I do not require a pacemaker. I am very glad about that. I have sinus bradycardia and Left Bundle Branch Block (LBBB.)

I often have a slow heartbeat of only 50 and am trying to manage my life. Yet many days I get a normal heartbeat of around 70 and I can actually function on those days. There are pieces to this puzzle that I have yet to comprehend and so I am interested in what others have learned. Thank you. :)

Post Edited By Moderator (achievinggrace) : 6/13/2012 5:57:41 PM (GMT-6)

Posted 6/16/2012 2:07 AM (GMT 0)
bump
Posted 6/17/2012 12:41 PM (GMT 0)
Hi LymeWarriorLady,

Well, doesn't look like anyone has exactly your issue.

However, I have just been diagnosed with micro-vascular angina. I have had several episodes that had all the symptoms and test results of a heart attack but wasn't actually. They've checked me out fully and they can't explain what happened.

In the past I've just put it down to one more effect of Lyme disease. They tell me that this syndrome is not caused by Lyme, but it is an inflammatory problem so what's a person to think?

I have been managing it with mild exercise, moderating my activity when I am having trouble and using sublingual Nitroglycerine.

It does throw a wrench in my day when it crops up. There is so much I want to do. I try to be patient when I can't do much and then take the good days and play them to the hilt!

Hope your issue settles down.
Posted 6/18/2012 5:20 AM (GMT 0)
Hello, Co-Moderator,

Thanks for your nice note. :)
Years ago when I had IV abx, in-hospital imaging showed little pits/scars in a couple of my heart valves from presumably borrelia...but maybe other stuff I was never tested for too. Back then I worried what the future held, but was so grateful that I was finally being treated. I did know that Lyme meant cardiac, neurological and arthritic battles.

I have won a lot of the big, bad battles. Atrial fib episodes, aberrant seizures, Neuralgia, Hemifacial Spasm, Bell's Palsy, small stroke with first Doxy Herx, leaving left side very weak, near liver failure from meds., bedridden for 2-1/2 years, etc.

So...here I am now. about a year ago I also had heart attack type pain and went to the ER via ambulance. The paramedics gave me nitroglycerin spray in my mouth 4 or 5 times. It helped the pain for sure.

My initial ER working diagnosis was heart attack, so they sent me to the cardiac catheter lab. Paramedics told me the ecg readout with "Left Bundle Branch Block" is often quite indistinguishable from MI. (Myocardial Infarction.) Those with this condition are advised to wear medic alert bracelets.

I was foolish during my heart attack scare....I would not wait so long again before dialing 911. (Please God, no next time!)  I did chew aspirins fast...which was right. But feared the expense. And now living with the bill...I do see why that stressed me! ;)
How comforting the paramedics were reassuring me that I was gonna be okay. What saints those folks are.

I feel I am managing this heart stuff pretty well now. Issues are a bit of a learning curve and readjusting to the idea that I can't push my body too much.
I still goof on good days and exhaust myself...but I was so lucky...my event was not a heart attack either.

I followed up with a cardiologist who specializes in electrophysiology and does a lot of pacemaker implants.

I asked him what other diseases caused folks to land in his office. Lots and lots of maladies cause cardiac fusebox malfunction. Diabetes, a heart attack, severe viruses, severe bouts with bacterial, fungal/mixed infections...bodily injury, kidney diseases, etc.

Sincerely,

LymeWarriorLady
Posted 6/18/2012 5:36 AM (GMT 0)
Howdy, again, Co-Moderator.

Thank you for your note. Very kind of you. Sometimes I am isolated and have few to talk to.  I am happy to make an online friend. :) Co-Moderator, I am not seeing your name displayed just now. It might be the tiny print that I can't make out. Please tell me what your forum name is--thanks.

I decided a long time ago, if I had to get sick I could make lemonade by taking a genuine interest in the medical science of it.

The micro-vascular angina you describe is interesting. I can easily see how having the tick pathogens swimming about like Esther Williams in our veins and tissues could do this.

I was privileged to meet Dr. Masters. At his office I used to hear patient's stories of going in with a pronounced pain near a big toe or in an earlobe and Masters would have his gal quickly get a needle for biopsy. Spirochetes were found in those samples. They are pretty big as microbes go. Those stabbing pains ain't for nothing.

I have always had vascular/circulatory issues. My mother and grandmother too--both arthritic. Both with chronic cold extremities. Maybe this should be a new thread? With Lyme, such a tapestry of symptoms!

I am curious if you also might have Reynaud's Disease?  The circulatory ailment. I do and it is a bad genetic trait with Lyme. I sense I am over-explaining, but as is the Reynaud's condition, my veins over-contract & spasm with cold such as grasping an ice tea. It is painful.

When I used to snow ski, I was always freezing and had trouble rewarming my hands and feet. I think it is logical that those Lymies with Reynaud's might present with cardiac troubles down the road because of a predisposition to veins over-reacting.

You and achievinggrace sound like you have a great grasp of science. Were you ever in the medical field?
I was not but have an affinity for it. And also have an uncle who is a retired MD. I adored Biology in high school and college. There are reasons for things. I am glad I have been able to navigate thru the medical labyrinth and survive thus far. Then again, I have had some brave and pioneering LLMD's. It is great not having to hide the docs' names all the time nowadays and speak in code. Well...at least not the deceased ones.

Don't know how to end this but say thanks for this forum. Sometimes I just really need to get this in print and release the thoughts from my head. I hope readers find what speaks to their situation and is helpful. Knowledge is power.

Take care,

LymeWarriorLady
Posted 6/18/2012 1:26 PM (GMT 0)
Hi Lymewarriorlady,

Being ill is a lonely business -- Lyme especially. This forum has helped me so much to get through the difficult times. Glad is is working for you, too.

I haven't been diagnosed with Reynauds, though before treatment, I had terrible trouble keeping warm. My hands feet were constantly and painfully cold. That has improved a great deal now that I am near completing my treatment.

Like you I loved science in school and have always taken an interest in medicine. I would have gone into the medical field if I could have done it outside!! I think a lot of Lyme patients end up getting versed in medical terms and processes in an effort to be their own medical advocates. I find doctors I come in contact with me now drill me for information about Lyme!

You certainly have been through some very extreme forms of Lyme. I wish you well in your continuing fight.
Posted 6/18/2012 5:19 PM (GMT 0)
Thanks for the affirming note back. I wish you well too. :) I am scheduling a colonoscopy today...my first. More fun! Haha! ;-)
Posted 7/26/2017 4:00 PM (GMT 0)

Lyme_Warrior_Lady said...
Howdy, again, Co-Moderator.

Thank you for your note. Very kind of you. Sometimes I am isolated and have few to talk to.  I am happy to make an online friend. smile Co-Moderator, I am not seeing your name displayed just now. It might be the tiny print that I can't make out. Please tell me what your forum name is--thanks.

I decided a long time ago, if I had to get sick I could make lemonade by taking a genuine interest in the medical science of it.

The micro-vascular angina you describe is interesting. I can easily see how having the tick pathogens swimming about like Esther Williams in our veins and tissues could do this.

I was privileged to meet Dr. Masters. At his office I used to hear patient's stories of going in with a pronounced pain near a big toe or in an earlobe and Masters would have his gal quickly get a needle for biopsy. Spirochetes were found in those samples. They are pretty big as microbes go. Those stabbing pains ain't for nothing.

I have always had vascular/circulatory issues. My mother and grandmother too--both arthritic. Both with chronic cold extremities. Maybe this should be a new thread? With Lyme, such a tapestry of symptoms!

I am curious if you also might have Reynaud's Disease?  The circulatory ailment. I do and it is a bad genetic trait with Lyme. I sense I am over-explaining, but as is the Reynaud's condition, my veins over-contract & spasm with cold such as grasping an ice tea. It is painful.

When I used to snow ski, I was always freezing and had trouble rewarming my hands and feet. I think it is logical that those Lymies with Reynaud's might present with cardiac troubles down the road because of a predisposition to veins over-reacting.

You and achievinggrace sound like you have a great grasp of science. Were you ever in the medical field?
I was not but have an affinity for it. And also have an uncle who is a retired MD. I adored Biology in high school and college. There are reasons for things. I am glad I have been able to navigate thru the medical labyrinth and survive thus far. Then again, I have had some brave and pioneering LLMD's. It is great not having to hide the docs' names all the time nowadays and speak in code. Well...at least not the deceased ones.

Don't know how to end this but say thanks for this forum. Sometimes I just really need to get this in print and release the thoughts from my head. I hope readers find what speaks to their situation and is helpful. Knowledge is power.

Take care,

LymeWarriorLady

I hope you get notified of my reply here!

I cannot believe I just read this!

here is my story....

As a young man, 15-16 i passed out in school classroom, teacher thought i had a seizure after seeing MANY Dr's I was also diagnosed with left bundle branch block....

after seeing numerous specialists ets life went on over the course of the years had different issues similar... unexplained passing out etc...

until one spring about 7 years ago... i had chest pain, paramedics said i had a heart attack... off to hospital i went... shortly thereafter i end up with a possible diagnosis of Brugada syndrome, primarily found in asian men in their 30's... i am caucasian of french/indian/german decent...

never ended up with the Brugada test because when i had an MRI with contrast of my heart it showed scar tissue... no explanation... and i had no protein in blood so no heart attack either...
At that time I had an ICD implant to protect me against arrhythmia's

fast forward to the last 3 yrs here and i have had several bad flareups of joint issues always attributed to tennis elbow etc.... (I work in an office, i do NOT overuse any joint in my body..)

most recently a month ago i went to dr my feet, ankles, knee, shoulders, elbows and hands all in excruciating pain. not able to bend fingers or walk on feet in morning. so i head to Dr tell my symptoms then she said i think you have lyme. i said "ohh yeah, I also have a rash" and i get these now and then...

i show the rash and i got an overwhelming WOW that is a good one, YoU HAVE LYME.

My blood test came back positive for lyme and they called me to tell me my numbers are VERY high with a lyme reflex of 4.11.

western blot also positive.

so now is the interesting part.... interpreting the blood test etc...

the blood test shows i have a current flare... lots of controversy over the lyme tests but i think i will use my judgement here and some common sense.

I now am seeing a person (Dr. who specializes in lyme treatment), he says he is certain that i have had lyme for over 20 years!!! he has no idea of the past medical history because I did not go there for that!

At the moment I am sort of beside myself, I will be going to my electrophysiologist with a lot to talk about on my next visit for sure.

Post Edited (Bowhunter76) : 7/26/2017 10:04:52 AM (GMT-6)

Posted 7/26/2017 5:34 PM (GMT 0)
Hello, Bowhunter - welcome to our community!

I'm not sure if the LymeWarriorLady - will be notified of your post.

She hasn't been on the forum since 2012.


But, I am glad you found us here...and shared your story.

Do you have a Lyme Literate Dr. to treat you?

We do encourage all new members to read through the thread at the top of the page; "New to Lyme?..Start Here!" It's packed full of useful information.
Posted 7/26/2017 10:23 PM (GMT 0)
Bee venom is the only substance that helped my bradycardia .it makes it beat stronger not necessarily faster..the vasodilation ofbvt and glutithione has got rid of my renauds ...licorice root raw help when i had low blood pressure and i havent passed out in over a year and half .i also believe rife cleared the bartonella infection from my heart ...scarring may never be gone but palps have stopped with iv magnesium ...you only got 1 ticker .tcb ...welcome bowhunter and LWL
Posted 7/27/2017 6:43 AM (GMT 0)
2.5 years later in treatment all my heart issues that i thought were permanent, including irregular heart beats, skipped beats, pain in chest, burning in chest, occasional cold hands and feet, etc...are GONE. don't underestimate the repairs that are going on in your body and please do not despair ...

take your treatment and for my heart it helped taking
- hawthorn onlinelibrary.wiley.com/doi/10.1002/14651858.CD005312.pub2/full
- CoQ10 europepmc.org/abstract/med/2276893
- magnesium - this i dont have to paste anything as you know it is part of what u get injected in the ER if u have heart failure
- rhodiola /www.ncbi.nlm.nih.gov/pubmed/27255210

i'd talk to a heart doc before taking these, since you seem to have some heart block already, so to make sure u don't do more harm with some of them. in my case they helped a lot...
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