lymes chest brutality and the heart (lymes clarity)

Hi, welcome to the forum. I have heard of lyme affecting the heart. There is a member here that has had this issue. Alyrose is the member I am writing about. Hopefully she will chime in. Maybe if you include the heart issue in your title she will be more likely to give you her take on this.

Please read the New to Lyme thread that is at the top of the forum. This will answer many of your questions.

Also, if possible you should find an LLMD to help guide you thru this and get you an accurate test.

It is very normal for symptoms to change with lyme.

Sorry I don't have more answers. Good luck.

Aly, that is terrible that you were told you need to find another way to "get attention". Who said that to you. Wow, that's bad.

I hope you are feeling better!

Being told that a person needs to find another way to get attention or to just get over it is actually very common for those with these infections - sad but true fact.

Hi Commandersorebod,
Welcome to our community!!

You most certainly do have some symptoms of these infections.

Yes, Strep can be a part of this infection group. And yes, the heart symptoms with these infection can be potentially dangerous for some - it's always best to be sure that your heart is in good condition when you suspect these infections and have heart issues.

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more.​


For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.


​You can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state and area that you would like to find a LLMD in and I will see how close I can get to your location.​


You can start a new thread titled something like "Looking for LLMD in the (insert the nearest larger city & state) area". Members can email you about the LLMD's that they see in that area if you have your email enabled. We don't allow doctors names to be posted though.


You can also email the Tick-Borne Disease Alliance at​[​​url]​[email protected]​ for LLMD referrals and you can go to ​tbdalliance.org​​ to learn more about these infections.


You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​​


​ You will want to find an ILADS (International Lyme And Associated Diseases Society) trained doctor, as ID Docs (Infectious Disease Doctors) believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey:
http://www.ilads.org/lyme/treatment-guideline.php

Hi all,

Normally I'm on the fibromyalgia and anxiety forums here but I am quite suspicious of lyme as I know I have been bitten at least once but I didn't notice getting bit when symptoms started. I have worked on horse farms and in lettuce fields so lots of exposure to those little buggers.

Anyways I could have written this post myself. My worst symptoms are those exactly like you guys described. The only difference is that mine are accompanied by horrible upper back pain at heart level. The palpitations and tachycardia are controlled by a small dose of beta blocker. I have been sick for 3 years but 2 years ago was my first attack of heart symptoms. Scariest point of my life. I thought I was dying for sure. Minus the odd chest pain or the odd palps or tach episode I have been good heart wise for almost 2 years. Last week it came back with a vengeance. I can't leave the house. As soon as my heart rate goes up even a little bit I get short of breath, threatens to palp, horrible back pain, etc. Like you guys I went running to doctors and hospitals (9 times in 2 months) the first time I had all this and they ran blood, ekgs, and xrays. I had a Holter monitor and stress test and my heart was normal. Like you Alyrose2 I have not had an echo which is where my anxiety come in thinking that they have missed something.

I was doing really good for a month or so and then this hit. The symptoms vary so much day to day, week to week, etc. I had headaches for a year and then one day at they stopped. I will have leg pain and then not. My doctor and others have said fibro but because of my history and the heart stuff I still think lyme. I can't work I can't finish the one course I need to graduate university, I can barely leave the house and lot of the time.

I am 24 and from ontario canada and was super active and healthy before all this just like a lot of people.

Sorry for the huge post but once I can relate to someones symptoms I tend to vent and tell a big part of my story if I haven't posted yet. I should have made a new post but this really hit home because I can't find people with these symptoms on the other forums which solidifies my thoughts that I have Lyme most likely.

And yes I have been called many similar things by er docs and neurologists. I had one neurologist that looked at my mom and said she is hefty and lazy and you need to make her life so miserable that she doesn't want to sit around and then she will be fine. My mother was livid and that was the first appointment she had been to of mine and she asked me if they always treated me like that lol. That was the worst but others have just said it nicer.

Anyways again sorry for the rant just kind of happy in a way to find people that have the same symptoms as me although it is not a happy thing to have.

Hi Jumper!! I'm so glad that you decided to pay us a visit!! Welcome to our community!! I think you are being very wise to check into this possibility!!

I would like to add that you could also use one of the at home protocols if you can't get to a LLND in your area. I don't live in the area, but I do have contact information for two Lyme Literate practitioners there. If you are interested in their contact information, just send me an email with the area in which you are interested in and I'll be happy to share it with you.

LOL! You should see some of our posts on here!! Your post wasn't long at all - and it was well broke up so that those with Neuro Lyme that have vision issues can read it easily as well - so thank you!!

Please do let us know how we can be of help to you!

Hi everyone! I'm new to this forum as well. My husband was very recently diagnosed with Lyme after suffering with varied symptoms since October of 2014, when he had his first major episode that landed him in an ambulance with suspicion of a heart attack. We believe he contracted it from a tick bite two years ago.

He actually has symptoms that are almost identical to commandersorebod and alyrose2, minus the streptococcal infection. Also diagnosed with panic/anxiety disorder, and possible SVT, although it's been tough to catch anything on the EKG's at the hospital, or the two heart monitors he's had to wear.

His heart rate can spike up to over 230 during a really bad episode. Every time we are told his palpitations and arrhythmias are in a normal range, despite the fact that he repeatedly tells the doctors that he can feel every single one, and that it hurts him tremendously.

The frustrating thing is that any knowledge the standard doctors have about Lyme affecting the heart is "heart block", so since they are looking for slower heart rates, they are claiming the Lyme is not causing this. I don't believe this.

He is repeatedly given pain medicine and anxiety medication, which is essentially putting a big fat band aid on the real problem. LYME!! He is currently on 100 mg of doxycycline twice a day for 30 days. After all of the research we have done, and the additional symptoms he is presenting with, I don't believe this is an appropriate treatment.

He was also recently diagnosed with narrow angle eyes, and recently diagnosed as being far sighted. He has never had a problem with his eyes before and has no family history of narrow angles. Has anyone else seen this as a result of Lyme?

We are in the process of waiting for an appointment with an LLMD.

I'm so sorry that all of you are going through this as well. It breaks my heart to see him in this much pain, and knowing that we can't wholeheartedly trust what the specialists are saying is incredibly frustrating. This appointment with the LLMD can't come soon enough.

I will update as soon we receive more information!

Alyrose2, what's the prognosis with your treatment? I'm so sorry you had such a terrible experience with the ER docs, we had a similar one as well. We were told that he probably suffered an anxiety attack because we live in a stressful area with lots of traffic. Yeah, I'm reeeeaaaall sure that was the case, doc.

Thanks for listening y'all! Sorry for the long post! I have more info about his story on my blog.

Post Edited (Starry Eyed Mommy) : 7/7/2015 1:07:43 PM (GMT-6)

I know that if you put in the search field "heart block, Lyme" Lyme carditis pops up first. Most of the articles are quite technical, or from the CDC which has too much of the information wrong about what helps - but I came across this article that might be helpful to you:
www.livestrong.com/article/185110-heart-complications-of-lyme-disease/

commandersorebod, did you receive the test results back that were sent out, if you don't mind me asking? It really sounds exactly like my husband's case.

I agree, every time we search heart problems with Lyme, it's typically the opposite problem that presents, with slower heart rates. So, thank you for the link Traveler!

Have you had your blood pressure checked in both arms? I know that if there is a 10-15 point difference between them, that it could be a sign of some blockage. I'm curious if you brought it up to your doctor to check if it would make any difference at all. Just a thought!

Revive, what is a bundle branch block? multiple branches of the heart have blockage? I'm curious why nothing can be done?!? Does your husband have Lyme as well? Were you both bitten by a tick, or do you suspect it was transmitted to one partner sexually? I'm sorry that you have relapsed, but I'm happy you're getting the treatment you need.

Sorry for all the questions, just very curious about everyone else's story, as they are all so different.

I am finally seeing a llmd on tuesday and feeling worse for ware than ever :(

about a week ago I woke up with a squeezing tigjt pain in the left side of my chest that kept occuring (feels like someone has their hand in my chest and is squeezing my heart trying to crush or sometimes just uncomfortable pinches) and spent the night writhing in pain and jolting to my feet until 10 in the morning when I finally passed out.

I woke up and the feeling was gone only for the pressure to once again grow later and on sunday built all night with small squeezing pains and while eating dinner towards the end got bout of severe nausea causing me to almost vomit up my entire meal.

The pressure and pinching pain kept me up until 3 monday morning when I finally decided to go back to the dreaded hospital. The docs gave me painkillers and stomach meds, did a chest X-ray, the main doc who I've seen before believed it to be stomach related and suggested an endoscopy and kept me in overnight and left.

They discharged me in the morning without mention of much, just to come back if I wanted to...

By wednesday pains had grown tenfold so extremely uncomfortable and kept feeling extremely painful leftside chest squeezing and right after dinner they got so bad like contraction squeezings with pressure I couldn't move an inch without 10x intense amounts of pain so I called an ambulance and ended up covered in pins and needles unable to move with my sensations like heart getting squeezed to death.

The ambulance fellows said that I was definitely having A-fib on their machines which I was like "yeah ok will it kill me" which they concluded probably not hahahha. But as I got in hosp it got worse and worse peaked at my chest pretty much feeling like it was flipping upside down and getting squeezed to death and crushed with me swearing all over and crying out. i got given loads of painkillers, ecg's, bloodtests and such and the doctor refused to give me a chest X-ray due to two day old one and the scans in the past and told me it "seems to be from stomach but not sure entirely what chest pains are" which I responded with "...okay so A-fib is okay" (not even knowin what it was) and doc told me there was no A fib and then followed with how ambulancds were unreliabl and "even if it was your not having it now".

They then kicked me out without giving explanation for anything that was happening and my chest was in so much pain (squeezes whenever move too fast I couldnt walk home (i liv extreme close to hospital) and had to taxi. It almost made me break down and cry after the experience and was the worst experience//pain///feeling of my entire life.

I followed this by seeing a new doctor the next day who booked me FOR ANOTHER CARDIOLIGIST APPOINTMENT (iv had 2 i hate them its not my heart supposedly so what is it) but came to the idea it may may maybe have been a severe esophogus spasm which Ive never heard of before and saw can come with lyme and mimic the exact feelings of a heart attack

HOWEVER i am feeling at the end of my rope and dk if this is gonna be the end and im gonna die or if its just lymes trickery because Im still so far away from treatment and dont know what to do.

HAS ANYONE HAD SENSATIONS LIKE THIS (i know if i make it through this im gonna remember it for the rest ofmy life) and/or experienced esophogal spasms? and does anyone have any opinions on action? ANGINA OR SPASM :( :( it felt exactly like a heart attack excruciating pretty scared

Soooo sorry for longest post ever didnt know whether to make a new thread or not , how are the rest of your adventures /starryeye/revive n co :shocked

Post Edited (commandersorebod) : 7/25/2015 5:42:48 AM (GMT-6)

I also am going to chime in here, so you can gather opinions and make your own call.

It wasn't until March 2009 for me when my first "attack" happened. For me it was another night, I worked night shift. Just had gotten off work, it was the weekend for me. As I walked in my door I got a phone call, it was my friend. We were talking cracking jokes and laughing. I was pouring myself a glass of wine and was about to start taking off my work boots and uniform (I was in the military at this time). A few months before this night, I had gotten first place in a 10k charity run. (non tooting my own horn, but i was extremely fit during this)
And note any Vitals I ever had taken prior to this date from any visit with doctors from 2005 to 2009. My vitals everytime whether it was an injury, sick or annual exam. My normal and average BP was 107/60 and resting heart rate was 65 to 70.

While pouring my glass of wine before I even had a chance to sip it, I felt this odd sensation up my spine. Crawling tingling sensation which moved from mid back to scalp. I figured maybe it was inflammation of some kind, I had just gotten off work and I felt similar sensations usually between shoulder blades. Immediately to follow was a "shocking" sensation through my left side chest. Felt directly over my heart, my legs immediately got weak. The room got extremely cold as if my blood was pumping ice water. And I got slight tunnel vision. I was still on the phone hearing a voice but at this point I didnt know what was being said. I stopped my friend, said "Im gonna have to call you back, something is happening". I hung up and just stood there.
If I was going to collapse, I didnt want to do it where I was standing. So I 'booked it' up the stairs where a roommate would come across me. I made it up the stairs and told my roommate "I think I need to go to the hospital,will you drive me? ". He thought I was kidding until he looked at me. Told me I was "ghost white" instead he called for an ambulance.
They arrived and I did pin prick tests because I lost sensation in hands and feet. Took my BP 180/110. Put me on the stretcher and took me in. I was there a few hours. The ER doctor hadnt a clue what was going on. He eventually just IV'd into me what he called an anti-inflammatory "on steroids" i think its name was Torodol. I think he also gave me some kind of sedative of sorts or Anxiety medication. I felt pretty drugged or even drunk when I left.

This event occured 3 weeks later, then about every week, until it was happening almost every day. I stopped going to the hospital for it. I just rode it out even though I was sure it was going to kill me. My resting BP over those next 6 months or so was 145/90 resting HR of 90. Until I found an LLMD, who suspected Lyme. Tested for Lyme using IGenex which came back hitting all markers for Lyme, Bartonella and Babesia co-infection. Put me on 3 antibiotics. I believe one was Levaquin and one was Minocycline. My first trial with these I had bad response or "die-off" according to the LLMD. I had too many doctors involved during this time and I didnt know what to think, I never even heard of Lyme disease prior to this testing.

BUT, the first thing that happened even though I had swelling of lymph nodes and such. My BP dropped low, so I got a short break from "hypertension" for awhile and the "panic attacks" never happened again but the remaining symptoms stayed.

Im going to stop there, because I could probably go on to write a book about all the in-betweens I skipped. Reasons I stopped treatment after that and then continued recently.
Your best bet, if normal non-LLMD doctors and specialist are completely lost with what you have going on. You most likely have Lyme or a co-infection of it.

I have a post on here called "Ongoing fight", Traveler has been a huge replier on that one. I have been posting on there with all the different doctors ive been seeing and testing.