Protocol request for idiopathic cardiomyopathy

[Gunnadoit]

Hi to all
I am 56 yr old female, diagnosed last July 2012 with idiopathic cardiomyopathy. My cardiologist suggesting it was probably viral in origin. At the time my EF was 35%. My angiogram revealed normal blood vessels. My bloods were normal. Chest xray normal. No oedema. Cardiologist said at rest my heart was perfect.

My only symptom at time was SOB on exertion ie walking up steps, hills etc. I thought I was overweight, menopausal and unfit which explained the SOB but I was always extremely tired and continued to push myself. I fainted on a plane coming back from Western Australia in june 2012 which was what prompted the stress test which found the cardiomyopathy.

Cardiologist put me on a beta blocker and ace inhibitor 2.5 mg each mane. He told me to loose weight, walk and walk and walk. I will be reviewed in July and I am terrified what he is going to say to me. Being an RN i was completely astonished to be given such news. Anyway now I have days I feel good others terrible.

Recently (5 march) I went for my morning walk and i had a fall resulting in me rupturing my ATFL, CFL and spring ligament in my Left ankle. Go figure!! Hence very little exercise since 5 march. I got an exercise bike so I pedal now for some exercise, I think the fall happened because at times out walking I would become quite light headed an my judgment was not too good.

My bp on meds sits low around 90-100/50-60. Now I also experience occasional flushing, and when I am in bed about to fall asleep I feel a flutter in my chest lasting a couple of seconds, this would happen a couple times a week.

So ... I found your website and have been chatting to Willy who has kindly forwarded me to this forum. Today I started chromium 200 mg tablets and approx 500 mg Msm (a powder with vit c). Slight headache during day but tonight feeling terrible with bp up to 155/100 whilst sitting watching dr who! Granted it was a bit scary! So am I on the right track?? I read on your forums that this initial part can make you feel crook. Do I have to wait 6 weeks before starting the other supplements?

A couple more questions ... If the damage was caused by a virus how do we know if that virus has gone? Is there a cascading injury to the heart similar to the brain after a stroke? If damage was done by a virus is it therefore the same as having a heart attack? What causes the flushing? Should alcohol be avoided completely or is there a safe limit? If I followed the protocol completely what is the time frame for some improvement? Is the heart ever completely healed on the protocols? Do you have to continue the protocol for life?

Phew! I don't expect whoever answers this to answer all my questions pronto at your leisure would be much appreciated. All I really want to know is am I on the right track??? Regards and much appreciation for this site.

[Willy]

SOB = severe out of brath?

RN?

Corrij is the therapist on this forum and will respond tot you.

Wait with supplements until she has time to look at your message

And yes it is the our intention to try to cure you competely



It will take some time, at least one year

[Gunnadoit]

Hi Willy
SOB - shortness of breath
RN - registered nurse (bachelor of nursing degree)

Thank you!

Regards

[Corrij (therapeut)]

Hello Gunnadoit,

Welcome on this forum.

Your questions,

If the damage was caused by a virus how do we know if that virus has gone?

Viral infections of the heart are not uncommon. Some resolve on their own, especially in healthy individuals, and leave no lasting problems behind. In other patients, the viral infection causes inflammation, and this damages the muscles in the heart, causing viral cardiomyopathy. Most commonly, viral cardiomyopathy presents as a form of dilated cardiomyopathy, where the chambers of the heart enlarge and the heart has to work harder to pump blood throughout the body.

The initial viral infection may not cause symptoms, or it may lead to symptoms so mild the patient never seeks treatment. Over time, the weakening of the heart causes issues like shortness of breath, dizziness, and fatigue. Medical imaging studies can reveal the enlargement of the heart, and the patient can also undergo testing to assess heart function and see how hard the heart is working.

A virus is a harmful pathogen which can cause a number of infections and diseases once it enters the body. After entering the body, the virus may multiply at a rapid pace thus increasing the severity of the infection it is causing. An infection in one part of the body can often spread to other parts by the means of blood circulation. Viral infections can also cause heart disease, thereby weakening the heart and hampering the function. It can lead to a number of issues related to the heart and cardiovascular system. Viral cardiomyopathy is one such disease that affects the myocardium and the cardiac muscles.

One of the main causes of this cardiomyopathy type is the presence of a virus which is called cox-sackie virus B in the walls of the heart. This virus causes an infection in the myocardial sac and the cardiac muscles, which leads to the inflammation of the muscles, hence affecting the organ. The heart may also become weak as a result of overstressed heart muscles pumping blood throughout the body. Viral cardiomyopathy can sometimes lead to dilated cardiomyopathy, where the atria and ventricles of the heart become enlarged due to infection. This van hamper the pumping of the heart Ischemic cardiomyopathy, which is another type of this cardiac disorder, may also cause heart failure. Another life-threatening disorder related to the heart is hypertrophic cardiomyopathy, where the muscles of the heart become abnormally thick, causing a hindrance to the pumping of the heart. In the absence of proper treatment, a substantial damage can be caused to the heart, which can prove to be fatal.


Unfortunately the first attack of the virus on the myocardium of the heart is asymptomatic i.e. it does not produce any signs. Even if symptoms are exhibited, they are too subtle to be noticed. The symptoms surface only after the condition has increased in intensity.

Most cases of dilated cardiomyopathy are called "idiopathic," which means that no exact cause can be found. Some doctors think that viral infections may be responsible. Because you may have had the viral infection months or even years before you show any sign of a weakened heart muscle, the exact cause of dilated cardiomyopathy is difficult to pinpoint.

Is there a cascading injury to the heart similar to the brain after a stroke?

Stroke is classified as both a neurological and a cardiovascular disease, as it is a disruption in blood supply to the brain which causes the neurological abnormalities. There are two types of stroke; ischemic and hemorrhagic.

After hypertension, the second most powerful risk factor for stroke is heart disease, especially a condition known as atrial fibrillation. Atrial fibrillation is irregular beating of the left atrium, or left upper chamber, of the heart. In people with atrial fibrillation, the left atrium beats up to four times faster than the rest of the heart. This leads to an irregular flow of blood and the occasional formation of blood clots that can leave the heart and travel to the brain, causing a stroke.

Atrial fibrillation, which affects as many as 2.2 million Americans, increases an individual's risk of stroke by 4 to 6 percent, and about 15 percent of stroke patients have atrial fibrillation before they experience a stroke. The condition is more prevalent in the upper age groups, which means that the prevalence of atrial fibrillation in the United States will increase proportionately with the growth of the elderly population. Unlike hypertension and other risk factors that have a lesser impact on the ever-rising absolute risk of stroke that comes with advancing age, the influence of atrial fibrillation on total risk for stroke increases powerfully with age. In people over 80 years old, atrial fibrillation is the direct cause of one in four strokes.

Other forms of heart disease that increase stroke risk include malformations of the heart valves or the heart muscle. Some valve diseases, like mitral valve stenosis or mitral annular calcification, can double the risk for stroke, independent of other risk factors.

Heart muscle malformations can also increase the risk for stroke. Patent foramen ovale (PFO) is a passage or a hole (sometimes called a "shunt") in the heart wall separating the two atria, or upper chambers, of the heart. Clots in the blood are usually filtered out by the lungs, but PFO could allow emboli or blood clots to bypass the lungs and go directly through the arteries to the brain, potentially causing a stroke. Research is currently under way to determine how important PFO is as a cause for stroke. Atrial septal aneurysm (ASA), a congenital (present from birth) malformation of the heart tissue, is a bulging of the septum or heart wall into one of the atria of the heart. Researchers do not know why this malformation increases the risk for stroke. PFO and ASA frequently occur together and therefore amplify the risk for stroke. Two other heart malformations that seem to increase the risk for stroke for unknown reasons are left atrial enlargement and left ventricular hypertrophy. People with left atrial enlargement have a larger than normal left atrium of the heart; those with left ventricular hypertrophy have a thickening of the wall of the left ventricle.

If damage was done by a virus is it therefore the same as having a heart attack?

most heart attacks occur due to blockages and blood clots forming in the coronary arteries, the arteries that supply the heart with blood. If these clots cut off the blood supply to the heart for a long enough period of time, heart muscle cells can die, leaving the heart with permanent and irreversible damage.

In cardiomyopathy, the heart muscle becomes enlarged, thick, or rigid. In rare cases, the muscle tissue in the heart is replaced with scar tissue.

What causes the flushing

Flushing is a common side effect of vasodilator medications used to treat hypertension, or increased blood pressure. 10-20% of cases of patients taking sildenafil for erectile dysfunctions experience flushing and headaches. Some other drugs that may cause flushing are gold salts, phentolamine, pilocarpine, prostaglandin E, nicotinic acid, prostacyclin etc.

Should alcohol be avoided completely or is there a safe limit?

No alcohol, or at maximum 1 glass of alcohol on a day. (Good reasons exist for absolute abstinence of alcohol. Ask your cardiologist whether this holds true for you too!)
No alcohol when it causes a bad sleep, or irregular and/or throbbing heartbeats.
If you nevertheless use alcohol: drink one (and never more than one) glass of wine preferably with your diner.

If I followed the protocol completely what is the time frame for some improvement?

one to two years.

Is the heart ever completely healed on the protocols?

Yes.

Do you have to continue the protocol for life?

Yes in a smaller amount of supplements.

For so far your questions.

Can you give me the names of the medications your using?

greetings,
Corrij

[Willy]

Clear explanation Corrij, excellent

[Gunnadoit]

Hi Corrij

Thank you for such clear explanations.

I am on coversyl 2.5 mg mane and Bicor 2.5 mg mane.

I am exceedingly grateful. Speechless really!!

Regards x x

[Corrij (therapeut)]

Hello Gunnadoit,

Thank you for your kind words.

I suggest,

ubiquinol 2 x 100 mg a day
acetyl-L-carnitine 1500 mg a day ( always on a empty stomach)
d-ribose 12 gram a day

Why?

More than fifty major articles have been published in reputable medical journals worldwide in the last ten years on the use of coQ-10 for heart disease, primarily congestive heart failure.

Studies at the University of Texas at Austin showed that 75 percent of heart patients have severe deficiencies of CoQ10 in heart tissue compared with healthy individuals. They have also found that taking coenzyme Q-10 significantly benefited three-fourths of a group of elderly patients with congestive heart failure.

In one of the early studies, seventeen patients with mild congestive heart failure received 30 mg of CoQ10 per day along with conventional drug therapy. All patients improved, and nine (fifty-three percent) became asymptomatic after four weeks.

In another study, twenty patients with congestive heart failure, due either to atherosclerosis or high blood pressure, were treated with CoQ10 at a dosage of 30 mg/day for one to two months. Fifty-five percent of the patients reported subjective improvement, fifty percent showed a decrease in New York Heart Association (NYHA) classification, and thirty percent showed a "remarkable" decrease in chest congestion, as seen on chest X rays. Improvements recorded in patients given Co Q10 include increased cardiac output, stroke volume, cardiac index, and ejection fraction. CoQ10 produces an increased force of heart muscle contraction. The increase in the force of contraction produced by CoQ10 is similar to, but less potent than, digitalis. (Please note that the levels of Co Q10 used are not sufficient to show a marked effect for heart disease. That may explain the lackluster performance.)

Other studies have shown that CoQ10 significantly improves heart function in patients with CHF. In a Scandinavian double blind study of eighty CHF patients, participants were given either CoQ10 (100 mg/day) or a placebo for three months. The roles were switch. In other words, those taking CoQ10 were then given the placebo, and vice versa. The improvements noted with CoQ10 were significant; the results were more positive than those obtained from conventional drug therapy alone.

In another double-blind study, 641 CHF patients received either CoQ10 (2 mg/kg of body weight) or a placebo for one year. The number of patients who required hospitalization or who experienced serious consequences due to CHF was significantly reduced in the CoQ10 group compared to the placebo group.

In an Italian study involving a total of 2,664 patients with mild to moderate CHF, the participants 50 to 150 mg of Co Q10 orally per day for ninety days. (The majority of patients (seventy-eight percent) received 100 mg per day.) After three months of CoQ10 treatment, the percentages of patients with improvement in clinical signs and symptoms were as follows:

Sweating 79.8 percent
Edema (fluid retention) 78.6 percent
Cyanosis (purple hue of skin) 78.1 percent
Pulmonary edema 77.8 percent
Heart palpitations 75.4 percent
Vertigo 73.1 percent
Venous congestion 71.8 percent
Subjective arrhythmia 63.4 percent
Insomnia 62.8 percent
Nighttime urination 53.6 percent
Shortness of breath 52.7 percent
Enlargement of the liver area 49.3 percent

Improvement of at least three symptoms occurred in fifty-four percent of patients, showing a significantly improved quality of life with CoQ10 supplementation. The results also showed a low incidence of side effects: only thirty-six patients (1.5 percent) reported mild side effects attributed to CoQ10.

Extensive Japanese research has found that about 70 percent of patients improved on CoQ-10.

Several studies, mostly from Japan, have looked at coenzyme Q10's role in cardiovascular disease. They include two double-blind, placebo-controlled studies, which are considered the most reliable. The studies showed that coenzyme Q10 has clinical benefits for 70 percent of the patients having congestive heart failure. Coenzyme Q10 is normally concentrated in the heart muscle. Its levels drop when the heart begins to fail.

Reported research from the University of Connecticut School of Medicine showed that using CoQ10 by patients with congestive heart failure helped more than 70 percent of them. The data comes from treating thousands of patients. Researchers believe that the situations, Co Q10 hasn't helped is because of inadequate doses or using products with insufficient potency. They say that to be effective, you should take a dose of Co Q10 sufficient to substantially raise the blood levels of CoQ-10. If that happens, they believe that all heart patients would benefit from Co Q10 supplementation.



Carnitine is an amino acid that is 'conditionally essentially', meaning that it is USUALLY made from two other amino acids, but that under certain circumstances, it may be necessary to get it in the diet. But the 'conditional' part of that is mostly ignored by those in medicine who mostly would barely be able to tell you that carnitine is an amino acid- let alone recognize carnitine deficiency symptoms or order a test for it. But research shows that carnitine may be more important to congestive heart failure nutrition than most people give it credit for.

One particularly large and high quality study on heart failure and carnitine showed that, across the board, patients with congestive cardiac failure improved more taking carnitine than those who did not. And this was regardless of the causes of congestive heart failure.

Other studies showed that carnitine was able to:

Reduce the size of the too large heart chambers

Increase exercise tolerance

Improve fatigue

Reduce incidence of death after going home

Decrease further episodes of heart failure

D-ribose is a simple sugar molecule with a wealth of functions in human and animal biology. Perhaps its most fundamental role is as a component of ATP, the universal energy carrier in the body’s cells. ATP molecules store energy as they are built up and release it as they are broken down—the more energy a cell requires, the more ATP it consumes. In fact, humans “burn” an amount of ATP equivalent to their own body weight every day!

Every single process undergone by living cells requires energy—even at rest, we are continually breaking down ATP molecules. And that means that we have a constant need for the components of ATP molecules, including D-ribose. Cells can make new supplies of D-ribose, but the process is considerably slower than the breakdown of ATP—this can leave a substantial “deficit” in the amount of energy a cell can utilize. In fact, it has been shown that even an overnight rest period is not long enough for a person to recover their normal ATP levels after a bout of strenuous exercise. It’s no wonder that many of us feel “drained” after a hard workout—we are in fact drained of the very substances we need to make use of all of our available energy!

When cells don’t have enough D-ribose to restore ATP levels quickly back to normal, they turn to alternate energy-generating processes. These are less efficient and produce much higher levels of damaging waste products that cause muscle burning and cramping and that can also inflict long-term damage through the oxidant stress they induce in muscle and heart tissues, leading to further dysfunction, injury, and pain.



Fortunately, research is demonstrating that ATP levels can be speedily brought back to normal if sufficient D-ribose is available. This has been demonstrated in the case of ATP depletion following strenuous exercise, which has implications for those who want to maintain health through lifestyle modifications. Perhaps more dramatically, D-ribose also restores ATP to normal or near-normal levels after the heart muscle injury seen in a heart attack.

D-ribose is not a vitamin—cells can and do manufacture it themselves, given enough time and raw materials. But when stressed by injury or high energy demands, they can’t keep up—leading one nutritional biologists to include D-ribose in a list of “conditionally essential” nutrients—those that have to come from outside the body under conditions, such as heart disease, which impose exceptional stresses on human tissue.

greetings,
Corrij

[Gunnadoit]

Hi Corrij and Willy

Wow! Thank you.

I will get these today. Do I take the ubiquinol am and pm? The carnitine 1/2 hr before food maybe lunch? The d- ribose in one dose in the morning?

It is amazing to me with so much scientific research supporting this that my cardiologist said nothing. Grrrrr!

I read others took msm and chromium first for several weeks. Do I not need the msm and chromium? I got these on sunday and started them ... still on 500 mg msm. Extremely tired and headaches to start but settling and feeling better. I will wait your advice.

Will these be all the supplements I will need?

I'm so excited! I have been feeling like life has been slowly seeping away from me, not that I'm scared of dying, just I thought I had more to do. Now I know I will get better, I just know!! Thank you.

[Gunnadoit]

Hi Corrij

Couldn't find any ubiquinol. Only on offer was ubidecarenone? Found an australian site that has NOW products and they have it so will order thru them. I remember seeing somewhere on your site that NOW products were recommended.

Am I on the right track?

Regards

[Corrij (therapeut)]

Hello,


Do I take the ubiquinol am and pm? The carnitine 1/2 hr before food maybe lunch? The d- ribose in one dose in the morning?

Yes,


Do I not need the msm and chromium? I got these on sunday and started them ... still on 500 mg msm. Extremely tired and headaches to start but settling and feeling better.

The clinical use of sulfur as an adjunct in our diet is becoming progressively more recognized as an important tool for optimizing health. MSM is already well-known for its joint health benefits, but may also be helpful for other conditions related to chronic inflammation and damage due to oxidation
MSM, which is a metabolite of DMSO approved for use in humans, primarily impacts your health by reducing inflammation. It’s widely used as a supplement for arthritic conditions. Like DMSO, MSM also appears to improve cell wall permeability, so it can be used to help deliver other active ingredients
MSM may be providing a missing link for optimal health, which appears to be related to sulfur. MSM is 34 percent sulfur by weight, but it is more than just a simple sulfur donor. It also affects sulfur metabolism in the human body, although it’s still not entirely clear how
Sulfur also plays a critical role in detoxification, as it is part of one of the most important antioxidants that your body produces: glutathione. Without sulfur, glutathione cannot work
Toxicity studies have shown that MSM is extremely safe and can be taken at very high doses. Even if you have a very rich diet full of raw vegetables and MSM-rich foods, you can still supplement and not hit that toxicity level. Clinical research studies have found that the effective amounts range from about 1.5 grams to 6 grams

If your on the amount of 2000 mg a day you can add the new supplements.

Will these be all the supplements I will need?
No, there will be some more in a few weeks time.

NOW is a good brand. In wich country do you live?

Ubiquinone and ubidecarenone are two of the scientific or medical names for CoQ10. Ubiquinol is an activated or reduced form of CoQ10. In tablets or capsules that contain this form of CoQ10, you can expect that your body will have more available CoQ10 than you would from formulations that use standard CoQ10, or ubiquinone.

Ubiquinol is the reduced (active) form of coenzyme Q10. As the active form of coenzyme Q10, ubiquinol has superior absorption and higher bioavailability than other forms of coenzyme Q10 such as ubiquinone/ubidecarenone.

greetings,
Corrij

[Willy]

MSM will try to detox your body, that will give you headache. Drink more water IF YOU ARE NOT ON A RESTRICTION

Or reduce the dosis

[Gunnadoit]

Hi Corrij and Willy

I live in Brisbane Australia.

No water restriction and i have been drinking more water and it has helped a lot.

So let me see if I have this correct,

Don't start ubiquinol, cartinine and ribose until I am up to and comfortble with taking 2000 mg of msm?

Do I have to ease into the doses of the above, as with the MSM, or just take the amount as recommended.

Thanks again.

[Willy]

What do you think Corrij? concentrate on your essentials?

[Gunnadoit]

Hi Corrij and Willy

I am up to 1500 of the Msm daily and doing fine.

Most days feeling more energy.

Thanks

[Willy]

MSM is used as a trick, it makes an alternative oxigen path in your body. It will NOT CURE CMP

So when you are completely on the protocol you can slowely drop the use of MSM to 500mg

@Corrij do you agree?