Is it our heart/ virus???

[Sallysblooms]

I have been reading and Dr. Myhill and others think a virus possibly started heart problems then CFS? Is hear failure happening with Disautonomia and CFS? I am really not happy after reading this. I am sure I have seen things before, but it really hit me.

 

[heapsreal]

I dont have much to add but possibly, as dr lerner finds cardiac abnormalities in his herpees infected cfs pts. Personally my fatigue and post exertional malaise is worse with aerobic/cardio type activities. I have tried on many occassions to improve cardio fitness through taking baby steps and slowly increasing my activity but it never works no matter how slow i tried, until antivirals, now i can walk for a good 1/2hour without feeling to tired, but more intense then walking kicks me. But for some reason i can still lift weights that are quite heavy as long as i train in a way that it doesnt put me out of breath, probably helps that i had a good solid weight lifting base pre cfs though.

Interesting subject!!

 

[Sallysblooms]

Not that the heart is not in shape but that the heart is failing. I have been worried since reading that. Before that, I was so optimistic. I know I will be again, but it through me for a loop.

 

[kat0465]

alot of us seem to have heart issues, me being one of them. i have irregular heartbeats,skipped beats, Tachy, brady, u name it.
it almost feels like something is attacking my heart. I also cannot do much on the cardio side, i get Bad PEM when i overdo. and scary chest pain from time to time.

it is scary and i worry about it all the time, especially when i read stuff about the heart and cfs. but i figure as long as noone can do anything about our situation, then im in someone elses hands.
i just Pray they find out how to treat us, before us longtimers are beyond help.
Kat

 

[glenp]

I have a friend who was given immunovir, her cfs physician felt that it was a virus attacking her heart but cautioned that it cant be proven unless bioposied. I decided to wait until I can see another cardiologist. I am almost 60 so hope I don't have to wait too long> I have been trying to help my heart with coq10 fish oils diet and came off of the effexor when it affected blood pressure

glen

 

[kerrilyn]

I read about CFS and heart connections years ago and I thought, 'nah, my heart is fine'. I watched Dr. Cheney's lecture about diastolic dysfunction and thought it was fascinating information, but for me personally I thought 'nah, my heart is fine'. I couldn't climb stairs without consequences, or do tai chi without struggling to stay standing, or take a senior's exercise class (when I was only 35 yrs old), without crashing with PEM, yet I still thought 'nah my heart is fine'. My problem must be cellular or endocrine or I don't know what, but the one thing I knew for sure was that my heart was fine.

Well, I did a poor man's TTT and finally realized (with something that could be seen) that I have POTS and my diastolic rhythm struggles to keep me upright. And lots of mornings I'm woken up from my heart pounding in my chest. Now I'm not so sure that my heart works fine, even though I realize that is more likely dysautonomia. I have a TTT test tomorrow and I'm not sure which I'd like more, that is shows something or that it shows nothing. Blah.

 

[Athene]

Yes I'm afraid heart failure comes. It takes a long time though. My mother has had CFS for 40 years and she now has heart failure. She has had an enlarged ventricle for a while before that. Prior to this you get prolapsed or at least leaky valves.
Some people get arrhythmias prior to this and some don't. I suspect this depends on what co-infections you have eating away at you.

I had a member of this forum nearly bite my head off when I dared to mention this on HER thread. She hasn't reached this stage yet and wants to keep her head in the clouds, I presume.

The most important thing you can do is always rest when you feel your heart beating hard, lie down, don't make it work harder than it can.
If you have an arrhytmia it is better to go for an ablation than take medications, all of which will worsen POTS and thus hasten the structural damage to the heart.

Usually for valves you need an ultrasound scan once every six month (they can suddenly go very fast) whereas for an arrhythmia most peope can rely on instinct as to when to get an ECG and Holter monitor, as you can feel when it is going through a bad patch. Hormones or lack of adequate rest are the two main things that will worsen an arrhythmia.

This info is all based on 24 years of visiting top cardiologists in London and Italy, BTW. Some were specialised in CFS and some were not.

 

[Sunday]

Good advice about the heart stuff. It's also good to know that coQ10/ubiquinol are helpful for this. I don't know if they can repair what's gone, but I get the feeling they can maybe help stop further decline. A lot of my heart symptoms have been greatly reduced (sometimes even banished) since I started taking it a month or two ago.

Heart surgeons and cardiologists are starting to recommend CoQ10 to their patients; it seems to be one of the more benign medications for cardio problems.

I took ubiquinol (supposedly the more active form of CoQ10, though I've never found any noncommercial sources that give a balanced opinion) earlier in my illness, and it helped some. I tried it again with good but variable effects. Then I read that, for maintenance, 50 mg 1 or 2 times a day is good, but a therapeutic dose for your heart is 400-800 mg a day. I am now taking 200 mg 2x a day (when I take more, my heart symptoms come back).

It is not a miracle cure, but my tachycardia and palpitations and like that have virtually disappeared. Brain fog and shortness of breath and OI got better, but not cured. I'm interested to see what happens over several months of using ubiquinol. I'm also on Freddd's protocol, so this is not a clean science experiment; it's just me trying to get better.

If any of you want to experiment with this, I did more research: virtually all of the ubiquinol in this country is made by Kaneka; retailers all use the Kaneka product, so the actual ubiquinol is the same quality in every product. Some ubiquinol supplements come in formulas which may or may not be better. For the plain, nothing-else-in-the-formula ubiquinol, Swanson's brand is the best buy (and I have found the quality of their products to be good). I also got a Jarrow ubiquinol formula with some other stuff in it that's supposed to help the action of the ubiquinol; I've come to think highly of the Jarrow brand so I just thought I'd try it and see if I noticed the difference. Haven't opened the bottle yet.

Please forgive if this is hard to read; I'm brainfoggy. I do feel that heart problems are important in what we've got, and ubiquinol is one tool for at least some of us, along with the excellent suggestions above. Anybody have others?

 

[parvofighter]

Viral myocarditis research on NLM/PubMed

Ironically I'm not up to a lengthy post right now, but am writing to give good news. First the bad - that yes, the heart is abundantly documented to be involved in viral cardiomyopathy. Just do a pubmed search on virus and myocarditis: http://www.ncbi.nlm.nih.gov/sites/pubmed .

The good news - there are many treatments available, however the essential premise from the leaders in heart biopsy diagnostics/treatment of viral heart disease (German cardiologists) is that treatment needs to be virus-specific (each virus manifests differently in the heart); and that you need to eliminate the offending virus. An interesting twist of course is if XMRV underlies this finding of viral cardiomyopathy. Also, crucial to differenciate latent from active infection, and this requires not just PCR, but also immunohistochemical analysis. As for diagnosis, I went to Germany for heart biopsy diagnosis, on the recommendation of the leading endomyoardial biopsy expert @ the Mayo Clinic. As one poster rightly pointed out, you need to know which virus(es) might be causing your cardiac issues - or if this is an unrelated cardiac problem.

Try to get symptomatic relief
If you have neither a sympathetic nor informed cardiologist, at the very least you can try to get symptomatic relief of blood pressure issues (eg. I'm on beta blockers, but again you need to check with your physician if this is right for you). And at all costs, avoid stress on your heart. In my case, when my heart is bad, any "valsalva-type" manoeuver (holding breath, bearing down, tensing abdominal muscles - eg. simple things like vacuuming) causes angina. As does cold air, another sign of "atypical angina", or coronary artery vasospasm.

Statins and XMRV
There are also recent rumblings that statins (used to lower cholesterol) can in fact worsen an XMRV infection - something to consider.(See http://www.hhs.gov/advcomcfs/meetings/presentations/cfsac_testimony_5_10_2010_anonymous_1.pdf )

More info on Iodine thread
Finally, I posted at more length on the Iodine thread on some other things you can do to reduce strain on your heart. See post #27 here: http://www.forums.aboutmecfs.org/sh...IODINE-Despair/page3&highlight=cardiomyopathy and in fact the whole thread is informative.

LISTEN TO YOUR HEART!
Bottom line, LISTEN to your heart symptoms. They can be dire, and "pushing yourself" is the worst possible thing you could do, especially when we are so close to getting more comprehensive treatment.

North American cardiologists starting to recognize atypical angina
Also on the good side - North American cardiologists have typically dismissed "atypical angina" (chest pain, when your coronary arteries are not blocked), and are now recognizing that "atypical angina"; cardiac syndrome X etc - previously dismissed as psychosomatic - are now associated with serious and negative outcomes. Specifically, the blood vessels to the heart can be inflamed and/or go into spasm. Compromise to the microvasculature of the heart is less readily detected, but in its own will cause angina, and can be fatal. In other words, if you have angina, this is a signal that your heart isn't getting enough oxygen. Listen to it!

Parvo:sofa:

 

[Sallysblooms]

Yes, I do have Disautonomia. After a year, I finally figured it out and a cardiologist said it might be that. He knew nothing and rude, sent me to another awful doc. I do have a CFS doctor I will see soon. I need to write a lot of questions down. I have had CFS for 18 years, but I was coping fine. THEN, the Disautonomia hit a year ago. I just kept thinking my heart was fine. An ultrasound and many EKG's say all if fine. I am now more careful of my heart overdoing it.

I do take Co Q10, D-ribose, liquid l-carnetine and good supplements.

 

[glenp]

parofighter ty for all of that information

sunday was it a misprint where if you take more coq10 your symptoms come back?

Sally when you had the echogram (ultrasound) did you have the bubble injection and have to cough. Appoarently some people have a plain echoegram - in the one I had they gave me an injection with air bubbles and then you have to cough, that is when the abnormalities showed up in mine. It showed the bubbles going where they were not supposed to go.

glen

I dont notice a difference but am hoping that the coq10 and fish oils I am taking are preventing some damage.

 

[Athene]

I've been taking 800mg a day of CoQ10 for several months but it hasn't made a noticeable difference to my heart problems. If it is helping to slow down the rate of structural deterioration then at least that is good news. The main thing I notice is it takes far longer for my muscles to reach that burning, can't-move-any-more stage than before.

Does anyone here know about modern techniques for diagnosing the specific virus that may be causing myocarditis/endocarditis? Can they do it nowadays? When I had myocarditis (1984) they spent months bringing people in from the neighbouring hospitals and never figured out what was going on. I just wonder if they can actually diagnose this nowadays.

Also, does anyone know about acute vs. subclinical/mild forms of myocarditis?
The infection I had back then was acute, with tachycardia of 300 bpm and I was in intensive care etc etc. Now I think I can feel when there is an infection in there causing very a mild version of this and I strongly suspect that a lot of PWCs have this going on over years and that this is what causes all the damage.

 

[kat0465]

My heart is the reason i'd like to try antivirals, my titers are chronically high for EBV and HHV6. i do feel as if these viruses are doing something major to my heart.
Still wading thru red tape to see if Ins will pay for them, about 10 years ago they found a slight thickening of my Mitral valve, but said ooh dont worry you will Probably be old and grey before it really
bothers you,

well we all know with cfs things tend o speed up and get worse faster. i know i need an echo, but honestly im afraid of what they will find. holters, ekg's dont show much. but my heart just dosent fell right.
so while im waiting to see if ill be put on anti virals, i'm religiously chugging my fish oil, coq10, and a baby aspirin a day.
i can say my heart feels a little better with these supps.

 

[Tammie]

Just wanted to mention that magnesium and potassium are both VERY important for the heart

 

[Sallysblooms]

I do take CoQ10, magnesium powder and I eat at least one banana a day. So far, I have not read that antivirals will help the retroviruses like Ebstein Barr. I have heard that a lot of people have bad relapses with antivirals, after they go off. I can take very few meds anyway. My doctors want my body to keep the virus down by raising my immune system with all of my supplements including the mushroom drops, vit C, Thymic Protein A etc. I take really good things.

My blood tests will be ready next week. I hope to see improvement. I know I feel better than when I started the program.

Sally when you had the echogram (ultrasound) did you have the bubble injection and have to cough. Appoarently some people have a plain echoegram - in the one I had they gave me an injection with air bubbles and then you have to cough, that is when the abnormalities showed up in mine. It showed the bubbles going where they were not supposed to go.

No, I didn't have that kind. Sounds spooky! I will have to ask about it.

 

[liverock]

My heart is the reason i'd like to try antivirals, my titers are chronically high for EBV and HHV6. i do feel as if these viruses are doing something major to my heart.
Still wading thru red tape to see if Ins will pay for them, about 10 years ago they found a slight thickening of my Mitral valve, but said ooh dont worry you will Probably be old and grey before it really
bothers you,

well we all know with cfs things tend o speed up and get worse faster. i know i need an echo, but honestly im afraid of what they will find. holters, ekg's dont show much. but my heart just dosent fell right.
so while im waiting to see if ill be put on anti virals, i'm religiously chugging my fish oil, coq10, and a baby aspirin a day.
i can say my heart feels a little better with these supps.

Janis Bell on her blog, also thinks some of her problems are due to CBV affecting her heart. As I pointed out in the comments section on her blog, selenium(in the form of sodium selenite), appears to help protect the heart against CBV5, but heavy metals, cadmium,mercury and nickel exacerbate the inflammation of CBV on the heart.

http://cfsmethylation.blogspot.com/2010/06/coxsackie-b-my-nemesis.html

 

[Resting]

Sometimes it is so hard to know what started what.

I was told that in my case, the initiating virus caused damage to the brain which caused dysautonomia. Since the autonomic system is not working correctly the blood is not circulating as it should and doesn't sufficiently supply blood to the vital organs which of course includes the heart. The blood carries oxygen so not enough blood means oxygen deprivation which then makes sense why so many of our organs begin to have problems. Since some blood is reaching the organs it is a slow process. As someone previously said, it takes time for failure of the heart. This also includes the other vital organs.

The good news is that we can do things to address the various organ's needs. Many supplements have been mentioned to help the heart avoid this process of decline. So there is still hope for all of us.

 

[curry]

Just wanted to mention that magnesium and potassium are both VERY important for the heart

I've been reading Dr Myhill and further to her, diastolic dysfunction can be due to a lack of magnesium.

'The heart muscle needs magnesium to relax - without this it becomes stiff and cannot easily fill with blood during the relaxation phase. This makes it inefficient as a pump because it has to work harder.'

She recommends magnesium injections (as magnesium doesn't get absorbed orally too well), and calcium tablets.

This as info, it might help someone.

 

[aiden424]

One of my worst symptoms is POTS. It's what keeps me in a wheelchair. I take tons of magnesium but have never tried magnesium injections. Atenolol helps some, I can at least sit up on it.
Kathy

 

[JAXintheCity]

I have Mitral Valve Prolapse... Was diagnosed with it around the same time I was diagnoses with CFS. I also get the irregular heart beat thing...but I just ignore it. :?