It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Chronic Fatigue Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 08-10-2008, 09:27 PM   #1
Newbie
(female)
 
Join Date: Aug 2008
Location: Asia
Posts: 6
Louise999 HB User
Heart problems with CFS

Since suffering with CFS I have had intermittent chest pain and arrhythmia which I am certain are heart related. However despite extensive investigation from two cardiologists the only thing which shows up is benign PVCs and slight (insignificant) mitral valve prolapse. Other cause of chest pain have also been excluded.

Has anyone else suffered similar problems?

 
Sponsors Lightbulb
   
Old 08-10-2008, 09:36 PM   #2
Junior Member
(female)
 
Join Date: Aug 2007
Location: West Chester, Ohio, USA
Posts: 30
lojo222 HB User
Re: Heart problems with CFS

I have had lots of heart palpitations since I contracted EBV. I have not had my heart checked as I had done so 2 years earlier for PVCs when I had gone through a terribly stressful time. I am just assuming that the virus is putting a tremendous stress on my body and mind and I tend to get the flutters and skipped beats when I am sick or stressed. I don't know if that is the same in your case, but it just helps me calm myself when I get them. They used to scare me so badly. Now that I know that the doctor said my heart is fine and they are just an annoyance, I can deal with them.

 
Sponsors Lightbulb
   
Old 08-11-2008, 08:00 AM   #3
Senior Member
(female)
 
Join Date: Dec 2004
Posts: 263
kiya HB User
Re: Heart problems with CFS

I've also had heart palpitations. They started about a year after I had suspected EBV and almost six years before I got CFS. Like lojo222 says, they can be controlled by keeping calm when they start. I have far less of them now.

If you've had cardiologists find nothing wrong, I would guess that your palpitations and pain are anxiety/stress related. This is good news - if you can control the causes or control your anxiety when the first palpitation happens, they will disappear far quicker.

As for whether it is related to CFS... difficult to say. CFS seems to manifest itself differently in different people and I've always been a believer that we're not all suffering from the one illness, ie. 'CFS', but a collection of different symptoms that haven't been properly diagnosed (or understood) and are so labelled as having 'CFS'.

 
Old 08-12-2008, 07:22 AM   #4
Senior Veteran
(female)
 
jojo's Avatar
 
Join Date: Mar 2006
Location: California
Posts: 2,846
jojo HB Userjojo HB Userjojo HB Userjojo HB Userjojo HB Userjojo HB Userjojo HB Userjojo HB Userjojo HB Userjojo HB Userjojo HB User
Re: Heart problems with CFS

If you look up Epstein Barr Virus and the problems it causes you'll see that it "can" cause heart problems. So can any herpe virus or bacteria. If it is in your body they can cause "numerous" problems....

But try telling that to a doctor that goes by what a text book says.

Hope you both get to feeling better soon.


 
Old 08-14-2008, 04:51 PM   #5
Veteran
(female)
 
Join Date: Apr 2006
Location: Victorville, Ca USA
Posts: 356
MOMOFBOYZ HB User
Re: Heart problems with CFS

Hi there! Yes, one year into my mystery illness I started having chest pain. It would come and go and I didn't want to be making a big deal about everything so I just ignored it. One day though I happened to have one of my falling down dizzy days as well as the chest pain. So I went to the ER. Spent 2 days in the hospital. Had an echocardiogram and my cardiologist says I have Mitral Valve Prolapse. But it is very common and most people have no symptoms. He put me on Topral? ANd I have been on it every since. I THINK I get dizzier without it. I still get the chest pain but he told me not to worry MVP can't kill you. So to just relax when it starts in.
I am supposed to have a stress test but my Infectious Disease doc who treats my CFIDS doesn't want me to do it. I suppose he would fall over if he knew I was doing PT 3 x week for my neck and spine!!

To answer your thoughts though I don't know if it's related the heart and CFS but many suffer chest painns. Same as thyroid problems. If it ever really gets bad I don't care what your dr says go to the ER It could be very dangerous.

God Bless

 
Old 08-14-2008, 05:51 PM   #6
Junior Member
(female)
 
Join Date: Aug 2007
Location: West Chester, Ohio, USA
Posts: 30
lojo222 HB User
Re: Heart problems with CFS

Hey momofboyz,
My sister and mother both have Mitral Valve prolapse with regurgitaton. My sister's doctor told her that she was born with it and she will probably never notice it. Once when she was under allot of stress and she happened to be visiting me, she suddenly felt dizzy and faint and we took her and had her checked out. They did the echo and you could see where the blood flowed backwards at one point. She doesn't take medication for it and usually has no symptoms unless she is stressed. My mother is the same way. She said her heart will feel like its "rocking" when she has an episode.
I had an episode in my 30's of some very strong heart flutters one night out of the blue. I had a full blown panic attack and ended up in the ER thinking I was having a heart attack. I had an echo and assumed I would have the same diagnosis as my mom and sister. I was very surprised when they said I did not have it. The reason I mentioning this is that I heard once that Mitral Valve prolapse can come and go, that the valves can get floppy due to the heart being out of shape from lack of exercise. I wondered if that is why those of us who have cfs or CEBV may develop MVP. I do not know if this is true. But I have wondered if your doctor knew if you have always had this or if you just developed it.

 
Old 08-14-2008, 10:05 PM   #7
Newbie
(female)
 
Join Date: Aug 2008
Location: Asia
Posts: 6
Louise999 HB User
Re: Heart problems with CFS

Thanks for all your replies.

I have decided to have 24hr holter monitor done if my doc agrees. I don't have EBV but I do have and IgM to CMV and although this has been dismissed I contacted Dr Martin Lerner who has done alot of research in CFS and heart problems caused by EBV/CMV and HHV6.

 
Old 08-15-2008, 09:22 AM   #8
Senior Member
(male)
 
Join Date: Jul 2005
Location: UK
Posts: 162
liverock HB User
Re: Heart problems with CFS

Hello Louise,

Like you I struggled with on/off chest pains and arrhythmias for years with my CFS and it wasnt until I came across a US National Institutes of Health funded government study which was carried out some 5 years ago that I found the answer.

[url]http://www.ncbi.nlm.nih.gov/pubmed/12920435[/url]

A CFS Doctor in the UK, Dr Sarah Myhill,put me onto it.
The study measured the cardiac output of CFS patients lying down and then standing up.

The normal healthy cardiac output in healthy people is on average, 7 litres/min lying down and 5 litres/min standing up, but the study found that CFS patients had on average, 5 litres lying down and 3.5 litres standing up, a drop of 30% from normal in the standing position. The amount of reduction in cardiac output was dependant on the severity of the CFS. In effect it is a form of cardiomyopathy.

This means the heart is struggling when your standing, a bit like a car trying to go up a steep hill in top gear. With this sort of scenario you will get mitral and other valve symptoms occuring as well.

Usually CFS patients have a lower diastolic blood pressure(thats the lower of the two readings) which indicate a reduced cardiac output which also confirms the study.

The heart muscle is no different to the other aching, tired muscles which you get with CFS and will not work as well.

What you can do about it is another story, but I have found certain supplements for treating cardiomyopathy to have been helpful to my heart.

 
The Following User Says Thank You to liverock For This Useful Post:
blondechix04 (08-12-2012)
Old 08-16-2008, 12:42 AM   #9
Newbie
(female)
 
Join Date: Aug 2008
Location: Asia
Posts: 6
Louise999 HB User
Re: Heart problems with CFS

Liverock

Thanks for your reply.

I too have read about Peckerman's study and do feel that this could explain my symptoms. It's just a shame that there appears to be no easy way of confirming this. I've tried to find someone that does the same impendence cardiography but without luck.

I assume that you are following Dr Myhill's treatment plan. I have just started this a month ago. Can I ask a few questions.

- What differences have you noticed since being on her treatment
- Are there any supplements that you think are more effective than others
- Did you react to any (I reacted to Mg and B12 injections and can't tolerate Acetyl L Carnitine)
- Have you ever been tested for any of the common CFS viruses such as EBV or CMV
- Is there anything else that has helped you

At least it's great to know that there are other people with similar symptoms. I'm just frustrated that my symptoms are so bad at the moment (I get angina/heart attack symptoms alot of the time)/

 
Old 08-18-2008, 08:28 AM   #10
Senior Member
(male)
 
Join Date: Jul 2005
Location: UK
Posts: 162
liverock HB User
Re: Heart problems with CFS

Quote:
I assume that you are following Dr Myhill's treatment plan. I have just started this a month ago. Can I ask a few questions.

What differences have you noticed since being on her treatment
I presume you got her free book which covered the whole subject of CFS and not just the problem of lowered cardiac output.

Her treatment is based on a lot of things I was doing already.
All her recommendations on subjects such as Pacing,Diet,Detoxing and the necessity of adequate good quality sleep as well as a complete spectrum of minerals, are equally important, but the need for 9 hrs sleep is fundamental IMO.

Pacing is also very important. CFS sufferers tend to be type A people, hard working, concientious and perfectionists, always on the go, and this makes it hard for us to realise we are like a car with only a gallon in the car tank and we need to drive our car(our bodies) at reduced speed and distance otherwise we run out of gas.

Its also important to check with a doctor that your adrenal glands and thyroid are working OK.
Quote:
Are there any supplements that you think are more effective than others.
As far as which particular supplement for helping with cardiac insufficiency was best its hard to tell, but taking CoQ10,Acetyl-l-carnitine,Ribose and magnesium were certainly helpful. Selenium is also good as its needed to form glutathione the master cell protector.

An immune supplement is also essential, I use Beta1.3 glucan.
Quote:
Did you react to any (I reacted to Mg and B12 injections and can't tolerate Acetyl L Carnitine)
Do you also have other allergies?
CFS means a high cell DNA die off and if you tend towards allergies this will be highlighted.

I once worked with a man who was bedridden for 3 years with CFS and forced to take early retirement. After nearly giving up in despair he consulted a specialist in allergies and she took him off all wheat and dairy and he was eventually back to normal and is now working again.

If you cant take injections of Mg can you take it orally?
If not taking baths regularly with a good dose of Epsom salts(Mg sulphate) will help.
You can also get sublingual B12 in the form of Hydroxycobalamin.
As far as carnitine is concerned,the only food with carnitine is meat and a serving will only give you 50 mg when you really need at least 1,000mg.

It may well be worthwhile cutting out wheat and dairy to see if your allergies improve.
Quote:
Have you been tested for any of the common CFS viruses.
I dont have any EBV or CMV antibodies. CFS can be caused by stresses other than viral, such as phsychological and chemical.
Quote:
Is there anything else that has helped you
Yes, prayer. When you dont know where your next ounce of strength is coming from it tends to focus the mind and meditation and prayer becomes easier especially if your bedridden. Of course all the old questions like 'Why me?'and 'What have I done to deserve this?' have to be gotten over first.
Once you realise that to a large extent the medical profession has at best very incomplete answers to CFS, prayer becomes much easier.

There seems to be at last a lot more research going on. I intend to start using a protocol soon, formulated by professor Martin Pall of Washington University. His protocol is based on restricting an excess of Nitric Oxide which is created by oxidative stress, affecting and damaging the mitochondria, which is the main cause of CFS, whether the cause is viral, phsychological or chemical.

I am also hearing good things about glisodin on some viral blogs. Its an SOD supplement which at high doses appears to counteract fatigue and in one person has changed their hair back from grey to black.

Last edited by liverock; 08-23-2008 at 06:19 AM.

 
Old 09-06-2008, 07:48 PM   #11
Newbie
(female)
 
Join Date: Mar 2008
Location: Los Angeles, CA, USA
Posts: 2
k8e123 HB User
Re: Heart problems with CFS

Louise9999, I recently read about the work of Dr. Lerner. Please post about your experience with Dr. Lerner when you can and what you learned. Thanks!

Quote:
Originally Posted by Louise999 View Post
Thanks for all your replies.

I have decided to have 24hr holter monitor done if my doc agrees. I don't have EBV but I do have and IgM to CMV and although this has been dismissed I contacted Dr Martin Lerner who has done alot of research in CFS and heart problems caused by EBV/CMV and HHV6.

 
Old 09-06-2008, 07:51 PM   #12
Newbie
(female)
 
Join Date: Mar 2008
Location: Los Angeles, CA, USA
Posts: 2
k8e123 HB User
Re: Heart problems with CFS

subscribe to thread

Last edited by k8e123; 09-06-2008 at 07:52 PM. Reason: posted in order to subscribe to thread

 
Old 09-23-2008, 07:13 AM   #13
Newbie
(female)
 
Join Date: Sep 2008
Location: sw ranches fl usa
Posts: 1
marijos1 HB User
Smile Re: Heart problems with CFS

Quote:
Originally Posted by Louise999 View Post
Since suffering with CFS I have had intermittent chest pain and arrhythmia which I am certain are heart related. However despite extensive investigation from two cardiologists the only thing which shows up is benign PVCs and slight (insignificant) mitral valve prolapse. Other cause of chest pain have also been excluded.

Has anyone else suffered similar problems?
Hi there: I also suffer from CFDS and have been having these symptoms ( internal shakiness ( very aware of my heartbeat) and feeling very weak when this happens, it usually happens when I am dehidrated and tired, mornings and late afternoon or if I have been sitting or standing for a while) This is caused by POTS (Postoral Orthastatic tachycardia syndrome) You need to drink lots of water to keep blood volume up and I also take Toprol (Beta Blocker) to control the heartbeats. It seems to be helping a lot, but I still get the symptoms a lot. Hope this is helpfull. removed

Last edited by HBMod07; 09-24-2008 at 07:07 AM. Reason: Directing searches is not permitted

 
Old 09-25-2008, 12:28 AM   #14
Newbie
(female)
 
Join Date: Aug 2008
Location: Asia
Posts: 6
Louise999 HB User
Re: Heart problems with CFS

K8e123,

I had the holter monitor test done by my cardiologist. The results according to him are normal but when I pushed him about flattened T waves he did acknowledge that there might be some of these but it was hard to say. I haven't been able to consult with Dr Lerner personally as I'm not up to travelling at the moment. However I have decided to try and boost my immune system and use natural anti-virals. I am currently taking

- ranitidine, twice daily (although stomach medicine has some immune effect)
- Pro-boost, twice daily (as recommended by Teitelbaum in Fatigued to Fantastic)
- Olive Leaf Extract, one daily (would like to take more but it lowers my blood pressure too much)
- Garlic (Garlinase 1 daily or 1 clove raw garlic)

I have also been on Dr Myhill's treatment plan for about 2 months now. I haven't noticed any massive change but I have been pacing carefully and feel that I may slowly be making some progress as I am finding that I can do a little more without the chest pain. I will get retested by Dr Myhill in a couple of months so will know if there has been any real change.

 
Old 09-25-2008, 12:31 AM   #15
Newbie
(female)
 
Join Date: Aug 2008
Location: Asia
Posts: 6
Louise999 HB User
Re: Heart problems with CFS

Oh yes, I forgot. I have also been drinking more and taking a homebrew isotonic mix with salt and low salt as recommended by Dr Paul Cheney. I think this might be helping with blood pressure. I never used to have any salt on my food.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
What I have done to survive Heart Failure & AFib with a high quality of life. Machaon Heart Disorders 66 05-29-2012 08:04 AM
Heart Rate while working out mhightchew Exercise & Fitness 5 04-29-2010 09:10 PM
anxiety? or heart problems 10lbBUBBLEyum General Health 1 04-20-2010 03:40 PM
Massive Heart Attack with 99% blockage jnh Heart Disorders 3 04-20-2010 12:44 PM
The four essential steps, that I've taken, that help me live with Heart Failure Machaon Heart Disorders 65 01-01-2010 03:07 AM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 11:41 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!