Cardiomyopathy or myocarditis from virus

This forum is intended for international users to help them with the treatment of cardiomyopathy or heart failure.
diane1
Bekende op het forum
Berichten: 27
Lid geworden op: Wo Aug 22, 2007 3:37 pm
Locatie: Finland

Cardiomyopathy or myocarditis from virus

Berichtdoor diane1 » Wo Aug 22, 2007 9:37 pm

Hi Corrij,
Here is my story:

I went into hospital emergency on 2.2.07 with severe arrhythmia and tachycardia. I had noticed "shortness of breath" upon exertion (chasing a bus down the street) in October, but had no idea what it was. Until the end of January, this was the only kind of symptom I had noticed.

I have had a heart murmur from childhood or birth, but told long ago not to worry about it and go on with my life, which I did. I have never been sporty though.
I am thin and have low blood pressure by nature, I was already very aware of food and health and nutrition and natural medicine, TCM, and am strongly opposed to using pharmaceuticals.

After two weeks of tests in the hospital, only discovering a slight deficiency of potassium, I had a biopsy that found a rare virus in my heart. As it is rare, my doctors do not know much about what to expect or how this virus works. They gave me immunoglobulin to help fight the virus, but it had no effect. They could only offer me heart drugs as a solution after that.

On my own I first focussed mostly on strengthening my immune system as the only way to try to fight the virus - Giving up all sugar, alcohol (I didn't drink much anyway), caffeine (same), spicy foods, etc. and being obsessive about eating healthy.
My EF rate in March was 40%, I don't know what it was in February. From the start I was given a beta blocker (bisoprolol 2.5) to treat the arrhythmia, but as my blood pressure is low, I can only take a small dosage. My blood pressure has returned to normal now, and the dosage hasn't been increased.

I started taking CoEnzyme Q10 in April, first 60mg per day, then 100. In May my EF rate was 50 and in June it was 58. Of course this improvement made me feel better and I could start to move around more, taking walks for exercise. During the first months I could not move around much at all. I still can't lift or carry things or do anything that requires strength however.

I just had a check-up and found that nothing has changed since June. The left heart is still enlarged and I am very aware at all times that it is not working correctly. It looks like Dilated Cardiomyopathy, but the cause is still thought to be the virus. There are a lot of unknowns in my case. Apparently the real problem now is the arrhythmia which keeps my heart stressed. Something like every third beat is extra systolic. (the arrhythmia is regular, stable and ongoing and obviously is affecting the heart's ability to function)

I have been desperately searching for natural ways to treat myself. I live in Finland where non-conventional medicine, and even health food, is hard to find. (Otherwise it's a great country!). I saw Kevin's link to your site and I was very excited to see your treatment program and I am very eager to start.

Here is what I am currently taking:
Potassium supplememt: 2 x 1500mg (Dr. ordered, and the value is still at about 3.8)
Magnesium supplement 3 x 250mg (Dr. ordered) (this gives me chronic diarrhea which I try to control a bit with Carob 2-3 times a day)
Vitamin E 2 x 200
Vitamin C 2 x 240
TwinLabs Daily One Multivitamin 1
(this contains 200mcg of chromium, 200 mg of selenium, so the bottle says)
Omega 3 1 x 1300
Pharma Nord Q10 1x 100
Probiotics for intestines
A.Vogel Crataegus drops for the heart
plus foods and herbs for immune system: garlic, melissa, olive leaf extract, blueberry, astragalus, etc.

Best regards,
Diane

Corrij (therapeut)
Verslaafd aan het forum
Berichten: 3948
Lid geworden op: Do Mei 19, 2005 10:46 pm
Contact:

Berichtdoor Corrij (therapeut) » Wo Aug 22, 2007 10:11 pm

Hello Diane,

Firts off all a very welcome on the forum :D

Will you try the bananas and the dried apricots?

I suggest that you start with 200mcg Chromium GFT, you can start this without a problem.
MSM, the final dosage is 3000 mg but we’ll build it up slowly, I suggest 500 mg for the first few days, If this goes well then 500 extra untill you are at the 3000 mg.
You have to build it up slowly because MSM detoxifies and it can cause headache, diarrhoea or tiredness.
Msm and chromium are not a part of the heart failure protocol but they are meant to give you more energy.

Furthermore I would like to advice you to start with acetyl L-Carnitine 3x 500 mg a day.

The link below gives you more info on L-Carnitine

http://www.ncbi.nlm.nih.gov/entrez/quer ... t=Abstract

MSM will improve oxigen transport in most cases of CMP. It will not cure you from CMP but will give you time to decide.

Chroom will improve carbohydrate metabolism, it will give some people (insulin resistant people, people with diabetes in the family) more energy.

L-carnitnie is an important factor in fat metabolism. Heart cells use only fat as fuel. a carnitine deficienty will cause energy problems in the heart muscle

regards,
Corrij
Those who do not have enough time for good health,
will not have good health for enough time.

diane1
Bekende op het forum
Berichten: 27
Lid geworden op: Wo Aug 22, 2007 3:37 pm
Locatie: Finland

Berichtdoor diane1 » Wo Aug 22, 2007 10:33 pm

Hello,

Thanks for your fast reply!

I will definitely start to increase my potassium level right away. I realised it had something to do with the arrhythmia, but didn't know that I should really keep it as high as 5.0. Bananas and apricots it will be!

The selection of supplements available here is rather small. I found MSM today in tablets of 1200. So if I take half, 600, I suppose that will be ok??

I am eager to start on the L-carnitine as I was hoping to do that soon anyway. Is the Pharma Nord brand a good one if I can get it?
I just read that carnitine is found in red meat. I don't eat much normally, and since March I don't eat any meat, except chicken sometimes.

You mention this thing about fat. I am thin and don't have much excess fat in my body. Should I eat more healthy fats like olive oil? I already eat some.

There is 200 mg of chromium in my multivitamin, should I also take the supplement of 200 every day?

Diane

Corrij (therapeut)
Verslaafd aan het forum
Berichten: 3948
Lid geworden op: Do Mei 19, 2005 10:46 pm
Contact:

Berichtdoor Corrij (therapeut) » Wo Aug 22, 2007 10:44 pm

Hi Diane,

If there is 200 mcg of chromium in your multi then thats enough, so you don`t have too take a chromium supplement.

Yes start the MSM 600 mg a day, and build it up slowly.

It is possible that you have a carnitine dificiency, so thats another reason to take carnitine :D

I give you a link with some information about healthy fat in Dutch, because I know you can read this :D

http://utopia.knoware.nl/~wwitsel/main/ ... ht.3j.html

http://www.fonteine.com/gezonde_vetten.html

greetings,
Corrij
Those who do not have enough time for good health,

will not have good health for enough time.

Willy
Verslaafd aan het forum
Berichten: 13069
Lid geworden op: Di Okt 09, 2001 3:00 am
Locatie: Exloo
Contact:

Berichtdoor Willy » Do Aug 23, 2007 3:25 pm

After two weeks of tests in the hospital, only discovering a slight deficiency of potassium, I had a biopsy that found a rare virus in my heart. As it is rare, my doctors do not know much about what to expect or how this virus works. They gave me immunoglobulin to help fight the virus, but it had no effect. They could only offer me heart drugs as a solution after that.

why did take the biopt? this is an unusual method for diagnosing heart disease because it is rather dangerous.

Which virus was found?
Met vriendelijke groeten,

Willy Witsel

Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina

Willy
Verslaafd aan het forum
Berichten: 13069
Lid geworden op: Di Okt 09, 2001 3:00 am
Locatie: Exloo
Contact:

Berichtdoor Willy » Do Aug 23, 2007 3:26 pm

I started taking CoEnzyme Q10 in April, first 60mg per day, then 100. In May my EF rate was 50 and in June it was 58. Of course this improvement made me feel better and I could start to move around more, taking walks for exercise.

to our Dutch standards 58% is back to normal......

What are the reference values in your country?
Met vriendelijke groeten,

Willy Witsel

Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina

diane1
Bekende op het forum
Berichten: 27
Lid geworden op: Wo Aug 22, 2007 3:37 pm
Locatie: Finland

Berichtdoor diane1 » Do Aug 23, 2007 3:48 pm

hi,
thanks for your interest.
After many tests and still no sign of what was causing my heart to act up, the doctors thought it must be a virus, and one that isn't otherwise detectable, so they did the biopsy as a last attempt to find something. And they did. They found what is normally a childhood virus that normally passes without great fanfare, but was very strangely attacking my heart now. Of course no one knows why or how I got it or how long it has been there or anything like that. According to the doctors this is very rare, but they also suspect that we will start to see more of it simply because they now have ways to find it!

your second question
yes, the doctors consider anything above 50 to be ok. so, in that sense my heart is functioning and i feel more alive. but my heart is still enlarged and it feels bad constantly, i suppose because of the enlargement and arrhythmia, and i still am not able to have a normal life.

diane

Corrij (therapeut)
Verslaafd aan het forum
Berichten: 3948
Lid geworden op: Do Mei 19, 2005 10:46 pm
Contact:

Berichtdoor Corrij (therapeut) » Do Aug 23, 2007 5:04 pm

Hi Diane,

Have you ever had a blood transfusion in the past?
I am wondering about the Parvo, normally the symptons are not that bad, and they could have find this in your blood, so why a biopsy?

A cardiomyopathy is often caused by a virus, you have travel a lot, didn`t you?

greetings,
Corrij
Those who do not have enough time for good health,

will not have good health for enough time.

diane1
Bekende op het forum
Berichten: 27
Lid geworden op: Wo Aug 22, 2007 3:37 pm
Locatie: Finland

Berichtdoor diane1 » Do Aug 23, 2007 5:47 pm

Hi,
No, I have never had a blood transfusion, never stayed in a hospital even!

Apparently it was not visible in the blood, and it doesn't show in blood tests. That is what the doctors have told me because I asked the same questions. Or let's say, maybe you can see the antibodies in the blood, but you can't see in the blood that the virus is in the heart. But I don't know more.

Yes I have travelled a lot, but nothing exotic of late. I had never heard of this virus before, but apparently it is in circulation here as in other countries in schools and daycare centers. Nothing special. Obviously I never had it as a child or I would be resistant I guess. It is impossible to know how I got it and when.

Yes, I have learned this now about hearts and viruses. There seems not to be much precedence of this virus attacking hearts though. The research the doctors and I have done show that there is no cure or treatment, and that it certainly can be life-threatening. My instinct is still to try to keep my immune system strong as the only way to fight it.

Diane

Willy
Verslaafd aan het forum
Berichten: 13069
Lid geworden op: Di Okt 09, 2001 3:00 am
Locatie: Exloo
Contact:

Berichtdoor Willy » Do Aug 23, 2007 5:58 pm

It is a childs disease

this is what I found

Human viral cardiomyopathy.

Maisch B, Ristic AD, Portig I, Pankuweit S.
Department of Internal Medicine-Cardiology, Philipps-University Marburg, Germany. maisch@Mailer.Uni-Marburg.DE

Viral infection of the heart is relatively common, usually asymptomatic and has a spontaneous and complete resolution. It can, however, in rare cases, lead to substantial cardiac damage, development of viral cardiomyopathy and congestive heart failure. Viral cardiomyopathy is defined as viral persistence in a dilated heart. It may be accompanied by myocardial inflammation and then termed inflammatory viral cardiomyopathy (or viral myocarditis with cardiomegaly). If no inflammation is observed in the biopsy of a dilated heart (<14 lymphocytes and macrophages/mm ) the term viral cardiomyopathy or viral persistence in dilated cardiomyopathy should be applied.The diagnosis of myocarditis and viral cardiomyopathy can be made only by endomyocardial biopsy, implementing the WHO/WHF criteria, and PCR techniques for identification of viral genome. The most frequent cardiotropic viruses detected by endomyocardial biopsy are Parvo B19, enteroviruses, adenoviruses, cytomegalovirus, and less frequently Epstein-Barr virus, and influenza virus.

http://www.ncbi.nlm.nih.gov/sites/entre ... d_RVDocSum

Registry data support a positive effect of 20 g i.v. pentaglobin (IgG and IgM) in adenovirus positive myocarditis for clinical improvement, eradication of both the inflammation and the virus. In Parvo B19 myocarditis our own registry data indicate that clinical improvement can be noted, but only inflammation is successfully eliminated, whereas Parvo B19 persistence remains a problem in the majority of patients. In Parvo B19 associated DCMi therefore dose finding studies and randomized trials are needed.

http://www.ncbi.nlm.nih.gov/sites/entre ... d_RVDocSum
Met vriendelijke groeten,

Willy Witsel

Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina

Willy
Verslaafd aan het forum
Berichten: 13069
Lid geworden op: Di Okt 09, 2001 3:00 am
Locatie: Exloo
Contact:

Berichtdoor Willy » Do Aug 23, 2007 6:02 pm

Met vriendelijke groeten,

Willy Witsel

Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina

diane1
Bekende op het forum
Berichten: 27
Lid geworden op: Wo Aug 22, 2007 3:37 pm
Locatie: Finland

Berichtdoor diane1 » Do Aug 23, 2007 10:01 pm

hi,
Yes, this is pretty much what we know. I was given the immunoglobulin treatment that is described there. It seemed not to have an effect, and my heart is still inflamed. sigh :(

I stopped researching the situation with the virus because it was too depressing and I was suffering from a lot of anxiety, which isn't good for my heart!

Diane

diane1
Bekende op het forum
Berichten: 27
Lid geworden op: Wo Aug 22, 2007 3:37 pm
Locatie: Finland

Berichtdoor diane1 » Vr Aug 24, 2007 10:13 pm

Hi Corrij,

Based on the ongoing condition of my heart and the information in the article, I think we can reasonably assume that the virus is still in my heart. :(
The main issues, as I understand it, I need to reduce the size of my heart (from the inflammation or from being stressed and overworked), and reduce the arrythmia, (though as I mentioned in the beginning, my heart always had a regular irregular heartbeat).

Does this change anything regarding your treatment protocol or should we go on as we started?

I have some other things I am wondering. I am not very familiar with MSM. I think I understand that it helps the oxygen and the energy in the cells. Of course a good thing, but would it also "help" the virus cells become stronger too by giving them more energy as well???

Does it matter what time of day I take the MSM? At the moment I take it before going to bed.


Another thing I always wonder with regard to medicines and the like. Very often the dosages are calibrated for a man of about 75-80 kilo I think. As I am on the low side of normal in terms of body weight (175cm, 60kg), will I need to take the same doses as a heavier person? I suppose it depends on each supplement and how much I need it?

I will get the L-Carnitine tomorrow and start taking it right away of course.

Regards,
Diane

Corrij (therapeut)
Verslaafd aan het forum
Berichten: 3948
Lid geworden op: Do Mei 19, 2005 10:46 pm
Contact:

Berichtdoor Corrij (therapeut) » Za Aug 25, 2007 8:37 pm

Hi Diane,

The firts step is the MSM and the Chromium, so don`t start taking the carnitine yet, we add this in a week or two :D

No the MSM doesn`t make the virus stronger, it gives you more energy en it helps oxygen transport.
The best time to take it is with your meals and not before bedtime, because it gives you energy, and that doesn`t help you to get to sleep :D

The dosage I recommend are the same for women and men :wink:

greetings,
Corrij
Those who do not have enough time for good health,

will not have good health for enough time.

Corrij (therapeut)
Verslaafd aan het forum
Berichten: 3948
Lid geworden op: Do Mei 19, 2005 10:46 pm
Contact:

Berichtdoor Corrij (therapeut) » Wo Aug 29, 2007 9:47 pm

Hi Diane,

Have you start taking the MSM yet?

greetings,
Corrij
Those who do not have enough time for good health,

will not have good health for enough time.


Terug naar “Treatment Heart Failure (cardiomyopathy)”



Wie is er online

Gebruikers op dit forum: Geen geregistreerde gebruikers en 2 gasten