disturbedme
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Member # 12346
posted
I am so tired of this. I am so sick of having these heart palpitations DAILY. It takes all of my strength and energy not to let them get me down and spiral into depression, because they have before and they usually DO cause me to get very depressed and very scared.
I was told by my LLMD that I have more palps than any of his other patients. That made me only feel worse/more scared.
And as usual - YES I have been to a cardiologist. I see a cardiologist VERY often because of this. I've had lots of workups and my cardiologist tells me everything is normal and that I'll probably just have to live with this. I really don't want to have to live this way. I really have no idea what is causing them and how to not have them happen anymore.
Why can't I have a normal, healthy heart?
Those who have this daily, what do you do to get through it? I am sick of being terrified of this.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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I have this and have lived with it for 10 yrs. I went through all the tests and was dxd with SVT - sinus ventricular tachycardia. It is bothersome and at first used to terrify me.
Now I know that my heart can handle these rapid accelerations and it settles again on its own. I was offered beta blockers to control it but declined.
You need to take control of how it is making you feel because the palpitations in of themselves are not dangerous to you.
I started doing yoga and generally trying to wind down a bit more. It made a difference. Dont let your fear take over because I promise you that it only makes the palpitations worse.
Posts: 42 | From new york | Registered: Dec 2008
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disturbedme
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posted
Thanks, kmj. I've had them for over 6 years. I am so sick and tired of them.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
Forgot to say, YES, mine are daily. You will eventually make peace with it once you realize it is not life threatening, just annoying.
Posts: 42 | From new york | Registered: Dec 2008
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disturbedme
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posted
I really don't know if I'll ever get used to them.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
Have you tried CoQ10 and/or magnesium for the palps? A low dose beta blocker (I'd recommend carvidilol), may help too.
And a low dose probably won't have much in the way of side effects, yet could possibly get rid of them.
Posts: 584 | From NY | Registered: Feb 2009
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disturbedme
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I am on all of those. I am on CoQ10, mag and also on a beta blocker.
Mostly on the beta blocker for tach that I've had since I was 12. The beta blocker helps the tach, but doesn't seem to help the palps much.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
I had them daily for the first several months or so. My resting heart rate was just about always over 100 bpm, and I had palpitations over 200 bpm.
Now when my palpitations were over 200 bpm, panic had a lot to do with it going that high. As soon as they got it under control in the E.R. with sedatives and beta blockers, it would be in the 120s or so typically, and once it got anywhere close to 100 bpm, they would release me.
I haven't had severe palpitations lately, but I am on anti-anxiety medications. Some days my resting heart rate is over 100, which can be uncomfortable. However, I am not taking beta blockers.
Have your doctors mentioned possible anxiety meds to you such as Ativan or Xanax (they are a controlled substance and addictive, but they work for most people with little side effects). Most LLMDs prescribe benzos, but I am sure there are some that are benzophobes. They can work in 15-30 minutes. The fact that you are getting very scared and then depressed makes me think there is an anxiety component or possibly a panic attack. There was no cause for my panic attacks, and I don't think panic attacks had everything to do with my palpitations, however, I think a beta blocker and/or anxiety meds could help you a lot.
At first, I didn't like the idea of anxiety medications because I didn't want people to have the false perception that everything is psychosomatic. Lyme is a multi-system illness and can cause psychological, neuro/neuropsychological, and physical problems.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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quote:Originally posted by disturbedme: I am on all of those. I am on CoQ10, mag and also on a beta blocker.
Mostly on the beta blocker for tach that I've had since I was 12. The beta blocker helps the tach, but doesn't seem to help the palps much.
Hmm... taking a decent form of Magnesium? How much CoQ10 daily?
You could see an arrhythmia expert, if you haven't already. Doesn't hurt to get second opinions. Although I suspect you have seen one, if getting treated for tach.
Posts: 584 | From NY | Registered: Feb 2009
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posted
Stay far away from caffeine it is a known trigger!!
I have these also, pvc and svt--supraventricular tachicardia.
In my case it is totally and completely benign.
I have a fantastic cardiologist who listened to everything I had to say, and compassionately answered all my questions.
He also explained to me that in my case (PVC) there is an ablation procedure that he specializes in (as well as many other doctors I'm sure), which helps patients with incessant palpitations.
It is usually indicated in severe cases where patients experience thousands of episodes a day--if this is you perhaps discuss whether you are a candidate with your physician.
-------------------- IGENEX DX Day Dec 2, 2009 IgM western blot: POSITIVE 18: + **31: ++ **34: ++ **41: IND 58: + **83-93: +
IgG western blot: Negative **31: IND **34: IND **41: +
Antibody Titer B Burgdorferi G/M/A: Indeterminate 1:40 Titer Posts: 20 | From Vermont | Registered: May 2009
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posted
I get PAC's every day. My worst bout was just last weekend for two days straight of a skip every third to fifth beat. And then they just stopped.
Normal days is probably in the range of 10 to 100. Since mine are predominantly PAC's, my last visit to the cardiologist was I could forget about seeing an electrophysiologist for my misfires. If I was having a lot of PVC's, then maybe, but they seem to think PAC's are less of an issue than PVC's.
I also get chest pain, shoulder pain, back pain, shortness of breath, and weird twitches in the chest. I, too, have had all of the cardiac workups.
I really hate the heart stuff also.
There is a book I was thinking of buying. I think it's called Metabolic Cardiology or something like that, by Dr. Sinatra. I think the four supplements he highlights on for heart health is CoQ10, D-Ribose, L-Carnitine, and Magnesium(?) -- I forget the 4th off the top of my head. I know that I am already taking all that he recommends but maybe not at the same doses. I believe he recommends some other stuff also, like Hawthorne Berry (which I also take).
Posts: 194 | From Colorado | Registered: Nov 2008
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posted
I'm not sure if people are aware, but you can get your CoQ10 levels tested. LabCorp does this, as do most regular labs, and insurance covers it. You just need your doc to write a script.
It's also worth getting your thyroid and cortisol levels tested, just to make sure it's not too much thyroid hormone causing a fast pulse, etc.
The CoQ10 test can be helpful for those with heart issues, and even those who supplement, since various CoQ10s absorb differently, so you'll know if you are taking enough or not.
If taking a low dose of CoQ10 for palps, people can consider a higher dose, or maybe ubiquinol instead.
Fish oil is another supplement to consider. Although check with your doctor first, as it can actually make some arrhythmias worse.
Posts: 584 | From NY | Registered: Feb 2009
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TerryK
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posted
Back in 2005 I was having 40 or more per day and I was on beta blockers for tachycardia when they started. My doctor had me wear a monitor for a week and my palpitations are benign arrythmia's.
Thyroid problems (low or high) can cause palpitations. I had mine checked and that was not the problem. I have found that balancing my minerals seemed to make the palpitations go away very quickly.
I took futurebiotics advanced colloidal trace minerals for a few months and adjusted a few other minerals if I started to have palpitations. I needed to briefly adjust potassium and calcium. I was already on magnesium.
Minerals get used up in detox so if you are in treatment for lyme or other infections or have increased detox needs you may need to adjust your minerals.
I take good quality minerals 2X per day, every single day and I rarely have a palpitation now.
That is just my experience and I can't say whether this strategy would help everyone but years ago I read that a lot of people get relief for palps with minerals.
Some minerals can be problematic for people who have certain heart problems so it may be wise to check with your doctor before adding a lot of potassium etc..
I felt so much more fatigued when I had constant palpitations. I hope you all get relief soon.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
I have posted this before: a combination of Magnesium, potassium and taurine (essential amino acid) can dramatically help palpitations - all kinds, tachycardias, PVCs, PACs, etc. I had them for years, know hundreds of people who've had them, who have been vastly improved by by these. PM me if you want more info.
Posts: 360 | From New York | Registered: Oct 2009
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I had them until I treated for Bart! When I relapsed they came back. So far after this 2nd tx round no more palps, fingers crossed.
Posts: 476 | From Columbus, Ohio | Registered: Aug 2007
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disturbedme
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posted
Thanks guys.
kday - I do take Ativan for these on an as-needed basis. I took one last night after they came on and got really bad and I'm VERY thankful I have them because if I didn't, I felt like I was going to pass out because when the palps come on bad enough it feels like I can't get a breathe in edgewise. It's very scary. And I do think I have anxiety, but I am pretty sure that is NOT what is causing my palpitations. The depression only comes AFTER the palps start. I can be fine and happy all day long until the palps start and then I get very down and scared and depressed.
gothbubbles - I have stayed away from caffeine for quite some time now - definitely. I am staying away from even chocolate because I'm too scared to do anything that *might* trigger them.
ott70 - my LLMD did tell me Cratoxy (Hawthorn Berry) was good and actually gave me some. I should take it. I'm kind of afraid because I've read that it caused some people to have tach and I don't need more tach already on the tach that I have. LOL.
Lemon-Lyme - I was taking 120mg CoQ10, but now I'm taking 100mg. I know I could take more if I wanted. But I will have to ask to have those levels checked to see what they look like as that will be interesting. I'm also hypothyroid, but had my levels checked and my TSH was 2.6 or so, so that is within normal ranges. I do take fish oil. I've taken it for a long time. I took it a long time ago when I wasn't as sick as I am now and didn't have palps so I am pretty sure the fish oil is not the cause of them becoming worse.
Terry - I looked up the futurebiotics minerals and they seem pretty cheap. I thought they were going to be VERY expensive, but am surprised they aren't? I can definitely look into that and ask my LLMD what he thinks.
Stacyb - I am treating Bart right now with Factive. What did you use and are using now to treat your Bartonella? I'd be really interested to know.
Also, as much as I like my cardiologist, he would only ever do a 24-hour holter monitor on me and I think I need something a lot longer to get a better look at what's going on, so I have an appointment on the 22nd of December with an electrophysiologist cardiologist. I am hoping this doctor is nice and open and realizes that I do need to have a 30 day holter on or at least an event monitor or something. I've had chronic, non-stop tach since I was 12 and have had palps for over 6 years. I'm sick of it.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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sutherngrl
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Yes I have palps everyday. I started having them when I was 27 years old, years ago, way before LD. I have Mitral Valve Proplapse and now frequent PACs.
With LD they are worse and happen more often. I have learned to live with them as I know they are not life threatening.
Have you tried beta blockers for them? I took beta blockers for years when I was young. These meds really help the palps. And also help somewhat with anxiety. Might be worth a try!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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disturbedme
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Yes - I am on a beta blocker and have been for around 3 years. The beta blocker does not help my palps very much at all, unfortunately... it does help slow my chronic tachycardia though.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
I had a 21-day monitor and several 24-hr monitors. I had PVCs PACs and SVTs, but was told my heart was "fine". I had a cardiac stress echo, and while my heart went to 200 while walking on a slight incline (I'm 23 years old and used to mountain bike 20-30 miles a day), I was also told everything was "normal" and my heart rhythm is normal. My heart rate didn't recover either (it was stuck between 100-110 afterwards). These cardiologists must have a wide range of normal, because what they see as normal, I don't.
I know your frustrations and I live them myself. We just want an answer, but instead of an answer, they reassure you that you are ok. Unfortunately, for people like you and me, it's not reassuring. I wish I knew of an alternative cardiologist that looks at a bigger picture.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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posted
I'm not sure why a cardiologist would say a heart rate of 100+ is normal, assuming it is a resting pulse. Perhaps, to them, it's just one of those things that is abnormal, but not necessarily dangerous... still... doesn't really make sense to me.
Disturbedme: I assume you had your free T3, free T4 levels measured too? It is possible to have a 'normal' TSH, and yet still be really low in thyroid hormones. Although I would think you'd have to be hyper to get your symptoms, not hypo, so that's probably not the cause.
Electrophysiologist is a real good idea.
As for CoQ10, I had my levels tested while taking 200mg daily, softgel form, and I was just under therapeutic levels (generally considered a serum > 2.5), so you may need more than 100mg daily. Or stay at same dose, but try the reduced form instead (ubiquinol).
Docs can check for mineral imbalances too, like serum magnesium, zinc, etc, although blood testing is pretty limited (can't tell intracellular levels). They may be good for frank deficiencies though. If you do get that tested, ask for the RBC tests -- a little better than regular serum.
Posts: 584 | From NY | Registered: Feb 2009
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"I'm not sure why a cardiologist would say a heart rate of 100+ is normal, assuming it is a resting pulse. Perhaps, to them, it's just one of those things that is abnormal, but not necessarily dangerous... still... doesn't really make sense to me."
He didn't explicitly label it as "normal", but said I shouldn't be concerned about it. However, I had the stress echo because I couldn't exercise because the the those symptoms. He said it's safe to exercise, but it makes me feel like crap, so why would I?
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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quote:Originally posted by kday: He didn't explicitly label it as "normal", but said I shouldn't be concerned about it. However, I had the stress echo because I couldn't exercise because the the those symptoms. He said it's safe to exercise, but it makes me feel like crap, so why would I? [/QB]
If you haven't already, I'd see another doctor and get a second opinion. I have a weird heart condition myself, and my first cardiologist was... well... sort of a jerk, so I simply got a new one.
So it's worth seeing another doc if you don't get any answers. Baby dose of a beta blocker may help, if no causes can be found
Posts: 584 | From NY | Registered: Feb 2009
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quote:Originally posted by Lemon-Lyme: If you haven't already, I'd see another doctor and get a second opinion. I have a weird heart condition myself, and my first cardiologist was... well... sort of a jerk, so I simply got a new one.
So it's worth seeing another doc if you don't get any answers. Baby dose of a beta blocker may help, if no causes can be found
Maybe I should, but I am kind of sick of doctors in general. I've developed some clubbing (http://en.wikipedia.org/wiki/Clubbing), though it's not so ugly like the person in the article.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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Ocean
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posted
DM,
I feel for you! Yes, I used to have heart palps every single day. It was terrible! That and the anxiety were the worst symptoms this past spring.
I can tell you what helped for me...eating large leafy green salads with lots of organic, raw sunflower seeds in them. My body would start to crave these salads...and I'm talking like the entire dinner plate is filled with salad...at least 1/4 cup of sunflower seeds, ect. I also did daily epsom salt baths because Mg Citrate orally actually made my heart palps much much worse!
Doing the Erchonia laser has completely eliminated the last of the heart palps. After the first 3 times with the laser I did get some nasty heart palps within 2 days, but then they were gone...had just a small episode in Sept, but besides that haven't had any really since June of this year (knock on wood!).
I know you've been through the ringer with heart symptoms and I'm so so sorry. I know you posted to me this past spring after I got my ECHO results back and told me about some of the stuff you've been through.
Take care and if you feel comfortable (since you are at least vegetarian like me right?) you could try just increasing your greens..or even try barley grass or other 'green' drink if you aren't allergic. I'm not a doc, but just trying to let you know what helped for me...the laser was by far the most beneficial, but the greens definitely reduced the heart palps to not every single day!
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Ocean, since Thanksgiving I actually have been making and eating huge salads with lots of veggies in them including sunflowers seeds, chickpeas, and/or avocado. Doesn't really seem to be helping me any.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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blinkie
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posted
I'm with Stacyb. Had them until I treated bart. When bart came back, so did the heart problems.
LLMD now thinks it's a BLO, not bart and no known treatment for it. I'm still trying everything I can.
BTW-I was on cortisol when I treated bart and my heart went haywire; thought I was going to die. Stopped the cortisol and the heart issues stopped as well.
Stop your thyroid and cortisol for a bit to see if that helps. If not, get serious about treating bart.
Posts: 1104 | From N.California | Registered: Jan 2008
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disturbedme
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Blinkie - What treatments have you done for your Bart?????
Like I said, I'm on Factive now which is in the family of Levaquin so it's treating Bartonella.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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I was on Rifampin and Zith. for the Bart. along with other abx for Babs and Lyme. I started with the Rifampin and Zith and it took away the Bart heart issues for me.
I am now on Factive too= pulsed 5 days on 5 off to see if we can kill the last symptoms for good this time.
Posts: 476 | From Columbus, Ohio | Registered: Aug 2007
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posted
Disturbed... Some quinolones, plus Biaxin cause severe palps in me.. like my heart is flip-flopping. No way I can take those drugs. Maybe you can't either.
I have palps of some sort everyday. Maybe not as bad as yours?? I live in fear of my A-fib causing a heart attack or stroke.... but I somehow just push it to the back of my mind.... usually.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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disturbedme
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Member # 12346
posted
I'm sorry you deal with this so badly as well, Lymetoo. It's definitely very scary. I can hardly handle the extreme fear it puts me in.
I sit here daily trying to figure out what could be causing this for me. Cardiologists have no idea, so I keep thinking it's got to be some infection or some virus or something of the sort. Then I wonder if it's my gluten intolerance causing it and if I'm getting gluten somewhere that I'm not sure of. Or if it's caused by hormonal imbalance or hormone fluctuations with my cycle. I am trying to hard to justify having them - that they aren't going to kill me and that somehow this will get better.
My cardiologist tells me that it's not dangerous all the time, but somehow I don't believe him because they aren't happening to him. They are terrifying.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
Had them for years, tried several beta blockers, on atenolol for years, but it slowed me down, kept my pulse right at 60, happy, sad, mad, scared,, 60. No energy.
Finally started working out, little bit at the time and built up, got off the beta blockers, took nearly a month to get out of my system, then it all just stopped. Rate went up when it should, went back down, palps quit, just worked.
Started having some trouble again once I got sick again, much worse after I started abx again.
Until recently starting treatment again, as long as I didn't get dehydrated, I didn't have problems.
-------------------- Ticks suck. Posts: 140 | From Alabama | Registered: Aug 2009
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posted
Didn't you say that you are on a quinolone?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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disturbedme
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Lymetoo - yes, I am on Factive. I just got on Factive though. I am not sure I want to blame that yet, but if it continues happening daily with no let up whatsoever, I am going to call my LLMD about it. Maybe just get back on Rifampin instead.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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disturbedme
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posted
Lymetoo - You were right, I looked up Factive and it said that a side effect is palpitations... maybe that is what has made my palps worse than usual lately? I don't know... maybe wishful thinking.
I am going to contact my LLMD tomorrow about it.
Rifampin isn't a quinolone is it? I was on Rifampin before but don't remember keeping a good record of my symptoms and things when I took that waaaaaay back when.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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Ok.. that's what I thought .. but I was too lazy to look again for it!!
Yes, it's probably brought it to the forefront for you. UGH!!
Rifampin is not a quinolone.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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blinkie
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posted
I took rifampin with zith, rifampin with bactrim(got me to remission while on it), now I'm on IM gentamicin and doxy (praying my c diff doesn;t come back).
stacyb-let us know how you do on factive
Posts: 1104 | From N.California | Registered: Jan 2008
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I will keep everyone posted about the Factive. Now back on the 5 days pulsed (2nd round) and things are well so far. I am also coming off my old Bart tx (Rifampin and Zith and D/C Mepron for Babs too). Now on Factive pulsed, Minocyline, Bicillin IM, and Plaquenil, Nystatin. I added them one at a time so we shall see. If Babs comes back I am onto adding the Cortem (Sp?)back in. Babs was not my big demon-Bart is/was for me.
Posts: 476 | From Columbus, Ohio | Registered: Aug 2007
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CD57
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posted
whatever happened with the Factive?
Posts: 3528 | From US | Registered: Apr 2007
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posted
I have palps too. Been to the cardiologist and they find nothing. My LLMD found an elevated CRP which he feels could be caused by infection.
Posts: 140 | From Illinois | Registered: Jul 2009
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momlyme
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posted
Friday, my DH got rushed to the hospital by ambulance from work... for chest pains. He called me when the nurse told him he was going & I said - have them do a western blot. My son has chest pains ALL THE TIME!
My son's LLMD called me (because my son's WBC is low) when I was trying to figure out how to get to the hospital to be with DH. I told her what was going on and she said have them do a WB! Chest pain was her first sign that she had LD. She thought she was having a heart attack.
Unfortunately, the ER sent DH home and refused to do the WB because he had no rash, no fever and did not remember being bit by a tick. According to them LD cannot be spread person to person or dog to person so other infections in the house do not warrant a test.
Grrrrrrrr.
Anyway. Heart palps, chest pains... can and are caused by lyme + cos. This does not meant there cannot be heart problems also... but if heart problems are ruled out... suspect LD + cos.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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