Recently diagnosed with dilated cardiomyopathy

This forum is intended for international users to help them with the treatment of cardiomyopathy or heart failure.
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EJ212
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Recently diagnosed with dilated cardiomyopathy

Bericht door EJ212 » za aug 21, 2010 2:08 pm

Hello all,

I am relieved and hopeful to find this forum, as my mother was diagnosed with dilated cardiomyopathy (biventricular) in April, with an EF of 35%. This increased to 38% after she was put on medication but decreased to 17% when she stopped taking her tablets. She went into heart failure and was admitted into hospital to stabilise her condition.

She is now consistently taking her medicine and all the fluid has been removed. Her last Echo reading placed her EF at 32-35% and her recent blood pressure reading was 110/80 mmhg.

We suspect that her cardiomyopathy was caused by prolonged use of the pain-killer diclofenac to manage monthly menstrual pain caused by uterine fibroids before she had a hysterectomy. Doctors are not sure what its origins are.


She has been prescribed:

Spirolonolactone (25mg twice a day)

Digoxin (0.125mg once a day)

Telmisartan (angiotensin II receptor antagonist) - 20mg once a day

Torasemide (dirutetic) - 5mg twice a day

Aspirin (75 mg twice a day)

Vitamin B-Denk (once a day - B1 (100mg) and B6 (200mg)

Zyloprim to reduce a high uric acid level caused by the diuretic (300mg once a day)

What Protocol can you suggest for her to follow? We have access to the brands that you recommend on this forum.

Thank you very much for your help.

Corrij (therapeut)
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Bericht door Corrij (therapeut) » za aug 21, 2010 7:58 pm

Hello,

Firts of all a warm welcome on this forum :D

Taking an NSAID such as diclofenac can increase your risk of life-threatening heart or circulation problems, including heart attack or stroke. This risk will increase the longer you use an NSAID.

Non-steroidal anti-inflammatory drugs have been associated with increased risk of congestive heart failure (CHF), so it can be the cause of her heartfailure.

I would appreciate it if you can answer the following questions. I know you already gave me some answers, but we always start by answering some questions so we get a more complete picture.


What is the cause of it, according to the cardiologist?

What is your EJF %, pump function?

How is your blood pressure, how high was it without medication and how high is it now?

What was your heart rate before and after the present medication?

Did they examine whether your veins (neck or groin) let enough blood flow?

Do you suffer with decomposition or swollen ankles?

Are there certain things at the moment you can’t do anymore?

Can you still climb the stairs for instance?

Or do you still do sports?

How does the cardiologist call your illness?

Do you suffer from allergies or have an intolerance to food or medicines?

Do you get tired quickly?

Do you eat a lot of sugar?

After some exertion , do you quickly get short of breath?

Does your mother also suffer with cardiac arrhythmia?
If this is so then there is a special test she can do to see if she has a shortage of potassium, this is often a cause of the problem.
She can see if this is the case by eating 4 or 5 ripe bananas a day. If she have cardiac arrhythmia and it gets less by eating the bananas then we can always proceed to taking potassium tablets.

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

EJ212
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Lid geworden op: ma aug 16, 2010 1:55 pm

Bericht door EJ212 » wo aug 25, 2010 2:00 pm

Hi Corrij,

Thanks a lot for your reply. My answers are below.
Corrij (therapeut) schreef:
Hello,


What is the cause of it, according to the cardiologist?

He does not know, and told us that it could be genetic.


What is your EJF %, pump function?

Last echo reading was 32-35 %.


How is your blood pressure, how high was it without medication and how high is it now?

It was very low without medication when she went into heart failure, so her cardiologist waited for it to increase before administering the full dose of Telma. Her recent reading was 110/80 mmgh.


What was your heart rate before and after the present medication?

Do you mean ejection fraction? It was 35% before she was put on medication, then when she stopped taking her medicine, it went down to 17%. It has since increased after she started taking her medicine again.

If you mean pulse, before medication it was 90/60 mmgh.



Did they examine whether your veins (neck or groin) let enough blood flow?

Yes, they did a dopplel and found her blood flow was normal.


Do you suffer with decomposition or swollen ankles?

Not since taking medication. All the fluid from her heart failure in July has been removed.


Are there certain things at the moment you can’t do anymore? Can you still climb the stairs for instance?

Since taking her medication, she has been able to resume regular activities. Before that, she found climbing stairs difficult. The only thing is that she finds carrying her handbag on her left shoulder painful.

Or do you still do sports?

She continues to enjoy walking but never engaged in any sport before the diagnosis.


How does the cardiologist call your illness?

Dilated cardiomyopathy (biventricular).


Do you suffer from allergies or have an intolerance to food or medicines?

Her current medication has made her skin very sensitive to the sun and she finds that her skin tans easily, but she has no other allergies/ intolerances.


Do you get tired quickly?

Since taking her medication, she is able to conduct regular activities and does not tire quickly.


Do you eat a lot of sugar?

Around 2 teaspoons in a cup of tea daily.


After some exertion , do you quickly get short of breath?

She has not been exerting herself much so it is difficult to know. But she does not get short of breath when conducting regular activities e.g. climbing stairs, cooking, walking etc.


Does your mother also suffer with cardiac arrhythmia?
If this is so then there is a special test she can do to see if she has a shortage of potassium, this is often a cause of the problem.
She can see if this is the case by eating 4 or 5 ripe bananas a day. If she have cardiac arrhythmia and it gets less by eating the bananas then we can always proceed to taking potassium tablets.

No. In fact, a recent blood test found that her potassium level was too high due to the spirinolactone so he told her not to eat any bananas. She had leg cramps after being admitted to hospital due to the diuretic Lasix but this has disappeared since then.

best regards,
Corrij

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Bericht door Corrij (therapeut) » wo aug 25, 2010 5:10 pm

Hello,

Thank you for answering all my questions :D

I would like to start with,

Q10 (ubiquinol) 200 mg a day
Acetyl-L-Carnitine 1500 mg a day
Taurine 1500 mg a day

The carnitine and the taurine on a empty stomach! Not together!

For example,

1/2 hour before breakfast,
1500 mg carnitine

1/2 before lunch or diner,
1500 mg taurine

CoQ10 is found as two major forms in the body, oxidized (ubiquinone) and reduced (ubiquinol), with the reduced form being predominant (over 90%). CoQ10 acts as an antioxidant in its reduced form, but its benefits go far beyond cleaning up free radicals in the body. Studies show that the oxidized form is an essential element in energy production… electron transfer… ATP production… and control of oxidative reactions. It also plays a key role in the treatment of cardiovascular illnesses, including congestive heart failure and angina.

L-carnitine is synthesized primarily in the liver but also in the kidneys, and then it must be transported to other tissues. It is most concentrated in tissues that use fatty acids as their primary dietary fuel, such as skeletal and cardiac (heart) muscle. In this regard, L-carnitine plays an important role in energy production by chaperoning activated

Addition of L-carnitine to standard medical therapy for heart failure has been evaluated in several clinical trials. A randomized, placebo-controlled study in 70 heart failure patients found that three-year survival was significantly higher in the group receiving L-carnitine (2 grams/day) compared to the group receiving placebo . In a randomized, single-blind, placebo-controlled trial in 30 heart failure patients, oral administration of 1.5 grams/day of propionyl-L-carnitine for one month resulted in significantly improved measures of exercise tolerance and a slight but significant decrease in left ventricular size, in comparison to placebo . A larger randomized, double-blind, placebo-controlled trial compared the addition of propionyl-L-carnitine (1.5 grams/day for six months) to the treatment regimen of 271 heart failure patients to a placebo group consisting of 266 patients . Overall, exercise tolerance was not different between the two groups. However, in patients with higher LVEF values (greater than 30%), exercise tolerance was significantly improved in the propionyl-L-carnitine versus placebo group, suggesting that propionyl-L-carnitine may help improve exercise tolerance in higher functioning heart failure patients.


The connection between the amino acid Taurine and Heart Failure is an interesting one that not many people know about- especially not cardiologists. Taurine is a 'conditionally essential' sulfur containing amino acid. This means that humans normally make taurine from other amino acids, but that in some people under certain conditions, they may not be able to make it and are required to get it in the form of foods or supplements.

Taurine is extremely plentiful inside of many tissues in the body- including the heart. In taurine and heart failure, the connection is that taurine acts as an antioxidant right in the heart tissues in order to prevent the day to day 'oxidative damage' that occurs throughout life. And one of the Causes of Congestive Heart Failure is an excess of 'oxidative damage' that leads to this supposedly 'incurable' chronic heart condition.

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

EJ212
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Lid geworden op: ma aug 16, 2010 1:55 pm

Bericht door EJ212 » wo sep 01, 2010 11:02 am

Hi Corrij,

Thanks for the reply and sorry for responding so late. My mother's gynaecologist gave her a woman's multivitamin to take yesterday, so we will add the supplements you recommended as well. I will let you know of her progress.

Thanks so much again for your time and help. We really appreciate it.

EJ212
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Lid geworden op: ma aug 16, 2010 1:55 pm

Bericht door EJ212 » vr sep 03, 2010 8:51 am

Hi Corrij,

Hope you are well. I have some questions regarding the protocol. My mother is taking 2 tablets of aspirin a day (75 mg), and I read that taurine acts as a blood thinner and diuretic. Would it be safe to take 1500 mg of taurine in addition to the aspirin, or would a lower dose be better?

Also, do you have any section of the Forum that discusses dietary advice for cardiomyopathy patients? What foods should they ideally avoid or eat plenty of i.e. avoid high sodium foods, alcohol etc.

Thanks.

Carolyn

Corrij (therapeut)
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Bericht door Corrij (therapeut) » di sep 07, 2010 4:09 pm

Hello Carolyn,

It seems there remains a controversy. The doctors that favor aspirin therapy is that many patients that have chronic heart failure and of those patients many patients have underlying coronary disease, and aspirin prevents reinfarction and other vascular events.

Arguments against the routine use of aspirin are that many heart failure patients do not have underlying coronary disease, and that the benefit of aspirin lessens after the first 6 to 12 months after infarction. "Several analyses suggest that aspirin may actually worsen outcomes in CHF patients, possibly because it inhibits prostaglandins, with resulting adverse hemodynamic and renal effects" (have regular tests for kidney disease).

Two recent prospective randomized studies have found that aspirin is associated with more frequent hospitalizations for worsening heart failure, although it did not have an adverse effect on vascular events. These results suggest that aspirin should not be routinely used in CHF patients and be avoided in those with refractory CHF, but that it may be beneficial in patients with recent infarction or multiple vascular risk factors.

Have you talked to the doctor about the benefits and risks of increased aspirin therapy?. Do they check her INR regular? The people on the forum all used anticoagulants and 1500 mg of taurine, so I don`t think this will be a problem.

TAURINE AS A DIURETIC

Inside the cell, Taurine maintains the potassium/magnesium balance whilst keeping excessive sodium out. In this regard its action could be likened to that of a diuretic but without all of the drawbacks of prescriptive medications. Taurine actually improves kidney function and is useful in fighting tissue swelling and fluid accumulation. Due to its effect on removing excess fluid, Taurine can also help lower blood pressure where the cause is related to fluid retention.

As a side note to the issue of blood pressure, Taurine dampens the sympathetic nervous system thereby relieving arterial spasm. When blood vessels relax, blood pressure falls.

Taurine-- has hypotensive and diuretic activity, tempers the sympathetic nervous system, is beneficial in CHF and arrhythmias, and has digitalis-like mentality

Taurine is the most important and abundant of the amino acids in the heart, surpassing the combined quantity of all the others. Under high stress conditions--hypertension and many forms of heart disease--the need for taurine increases to compensate for either an accompanying impairment of taurine metabolism or increased requirements. Dr. H. Kohaski and colleagues (Japan) suggest that entry-level taurine may have been low and, as the stress of hypertension progresses, taurine levels drop even lower (Kahashi 1983; Braverman et al.1987).

Taurine has a diuretic action that benefits hypertensive individuals, as well as patients with congestive heart failure. Taurine elicits much of its diuretic action by preserving potassium and magnesium and by promoting sodium excretion (Atkins 1996b).

Taurine also reduces blood pressure by acting as an antagonist to the blood pressure-increasing effect of angiotensin, a circulating protein that is activated by renin, a hormone secreted by the juxtaglomerular cells in the kidneys in response to a drop in blood pressure (Braverman et al. 1987). When both blood and urine taurine levels decrease, renin is activated and angiotensin is formed. As a result blood vessels vasoconstrict, water and salt are retained, and blood pressure increases. Taurine suppresses renin and breaks the renin-angiotensin feedback loop. Dr. Robert Atkins, a complementary physician with a creditable cardiology background, amplifies the positive results of scientific literature, stating that taurine would be his choice were he selecting a single nutrient to treat hypertension.

Dr. Y. Yamori (a Japanese researcher who established an amino acid-stroke association) studied a strain of rats, genetically susceptible to strokes. Yamori found the rats had a much lower incidence of stroke, dropping from 90% to 20%, if their diet was supplemented with methionine, taurine, and lysine (Yamori et al. 1983; Braverman et al. 1987).

Japanese researchers found that 3 grams of taurine, administered daily to patients with congestive heart failure, was more effective than 30 mg of CoQ10 (Azuma et al. 1992). The Japanese, who use taurine widely in the treatment of various forms of heart disease, found that 4 grams of taurine, given for 4 weeks, brought relief to 19 of 24 patients with congestive heart failure. Taurine appears to act much like the drug digitalis, increasing the contractility of cardiac muscle and the force of the pumping action.

Taurine appears to impact cardiac arrhythmias through various pathways. For example, some forms of cardiac irregularities are helped by taurine because it regulates membrane excitability and scavenges free radicals. In addition, taurine protects potassium levels inside heart cells, which, when imbalanced, can cause electrical instability and cardiac arrhythmias (Braverman 1987; Chahine et al. 1998).

Some types of premature ventricular contractions and arrhythmias respond to taurine because the amino acid tends to dampen activity in the sympathetic nervous system (SNS) and the outpouring of epinephrine. As the SNS is quieted, the heart tends to beat less aggressively and the blood pressure is lowered. Lastly, Lebanese researchers showed that the incidence of ventricular fibrillation and ventricular tachycardia were significantly reduced when taurine therapy was utilized (Braverman 1987; Chahine et al. 1998). A suggested dosage is 1500-4000 mg daily.

The supplements,

vitamin C
vitamin D3
magnesium
ribose
alpha-lipioc acid
selenium

About the food,

1. Watch what type of fuel you feed your body
Why do many people buy Super gasoline even though it's more expensive? If they bought the least expensive gas they could save a lot of money. But only in the short run. Car engines run more efficiently with high-quality fuels and the parts deteriorate much faster when you use cheap fluids.
Like your car, your body is comprised of different parts and your heart is the engine. The fuel you use to keep your heart and other body parts running makes a difference in your performance, whether you're at work, at school, or with your family. The Mediterranean diet is proven to be the best fuel available to keep our parts running well until old age.

2. Cut down on processed foods and load up with fruits and vegetables
To have a healthy heart like the Mediterraneans, and maintain normal blood pressure, your diet should be five times higher in potassium than in sodium. Unfortunately in the typical American diet, the amount of sodium is five times higher than potassium.

Why do we have it so backwards? Because seventy-five percent of the salt we eat comes from processed foods. And, since the American public consumes an excessive 4,000mg of sodium per day, the American Public Health Association recently called for a 50 percent sodium reduction in our nation s food supply over the next ten years. It s estimated that such a reduction would save at least 150,000 lives annually.

By eating fruits and vegetables, you are also replacing other foods in your meal that may be high in sodium. Plus fruits and vegetables provide high amounts of potassium, calcium and magnesium so you can have a normal heart beating and low blood pressure.

3. Give yourself a daily dose of olive oil
Butter is rarely consumed in the traditional Mediterranean diet and margarine was completely unknown in the area until recently. People in the Mediterranean countries use extra virgin olive oil, one of the best sources of monounsaturated fat, the kind of fat that does not stick to your arteries. Extra virgin olive oil is also an excellent source of many antioxidants such as vitamin E.

Many people take vitamin E in capsules thinking that they can get the same health results. However, studies have shown that capsules can never replace the real thing. Researchers for the Heart Outcomes Prevention Evaluation Study found that people who received 265 milligrams of vitamin E daily in the form of supplements did not have fewer hospitalizations for heart failure when compared to those who received a placebo. That's why nutrition authorities recommend 2 to 3 tablespoons of extra virgin olive oil a day as prevention.

4. Eat more legumes
By legumes, I mean dry beans, lentils, chickpeas and garbanzo beans. Legumes, a staple food in the Mediterranean diet for centuries, are packed with fiber as well as minerals such as iron, magnesium, manganese, phosphorous, zinc, potassium, folic acid and some of the B-complex vitamins. They are low in fat and sodium.

Legumes are also very high in soluble fiber that helps you easily get rid of your cholesterol. And to top it all, legumes can help balance your budget because they are very inexpensive. If legumes are not part of your regular diet, you are missing an almost perfect food.

5. Eat more aromatic herbs, garlic and onions
To add the Mediterranean flavor to your meals, replace salt with garlic and aromatic herbs. Garlic is a truly wonder of nature. It has been used for thousands of years as both food and medicine. People around the world, especially those who enjoy few chronic heart diseases, use it extensively in their daily diets.

Why? Because, more than 200 chemical compounds that might protect our bodies have been found in garlic. It has recently been shown that garlic can significantly reduce cholesterol and triglycerides, lower blood pressure and prevent the formation of blood clots. It can also protect our bodies through its antioxidant properties.

Onions and other aromatic herbs work very similar to garlic. They contain about 25 active compounds that appear to help combat heart disease, strokes, high blood pressure and cholesterol.

greetings,

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

EJ212
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Lid geworden op: ma aug 16, 2010 1:55 pm

Bericht door EJ212 » do sep 09, 2010 4:40 pm

Thanks Corrij! The information you provided is very helpful. We are in the process now of acquiring the vitamins you recommended and will update you on our progress.

Corrij (therapeut)
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Bericht door Corrij (therapeut) » do sep 09, 2010 4:46 pm

Hello Carolyn,

Thats my job :D :D

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

EJ212
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Lid geworden op: ma aug 16, 2010 1:55 pm

Re: Recently diagnosed with dilated cardiomyopathy

Bericht door EJ212 » di aug 07, 2018 12:31 am

Hello,

I wrote to you years ago about my mother and would appreciate your help again. I sent Corrij an email but thought I'd post here as well to get an answer as soon as possible as I have a cousin travelling from the US on Friday who may be able to bring some supplements.

My mother stopped taking her medicine and vitamins consistently for the last year and this April, her feet started swelling. When she went to the doctor, an x-ray revealed that her heart was enlarged and her ejection fraction was around 27%. She was given Lasix and spironolactone to remove the fluid from her body but they did not seem to work so her cardiologist put her on ½ tablet of metolazone (2.5mg) daily which cleared the fluid in 3 days.

She was then put on the following regimen for 3 months and is due for a check-up in about 6 weeks time, which is when the doctor will check her blood and adjust her regimen:

Morning:

1. Lasix – FuroDenk (40mg) – 1 tablet

2. Spironolactone (25mg) – 1 tablet

3. Telma-Telmisartan (20mg) – ½ tablet

4. Lanoxin (Digoxin) (0.25mg) – ½ tablet

5. Mubex-40 (Febuxostat) (40mg) – 1 tablet

6. Aspirin (75mg) – 2 tablets

Evening:

1. Spironolactone (25mg) – 1 tablet

2. Vit-B Denk – 1 tablet

Separately from the doctor’s prescription, she is also taking 100mg of Co-Q 10 and a multi-vitamin (Wellwoman) once per day. She wants to go back on her vitamin regimen.

Would you please help me know which vitamins she should start with and how much?

I hope to hear from you soon.

Willy
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Re: Recently diagnosed with dilated cardiomyopathy

Bericht door Willy » vr aug 10, 2018 12:27 pm

My mother stopped taking her medicine and vitamins consistently for the last year and this April, her feet started swelling.
She did this in the past with devastating results, why does she stop with meds and sups when they work for here?
Met vriendelijke groeten,

Willy Witsel

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

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