Just Diagnosed With Cardiomyopathy

This forum is intended for international users to help them with the treatment of cardiomyopathy or heart failure.
brig
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Just Diagnosed With Cardiomyopathy

Bericht door brig » vr apr 17, 2009 4:59 am

I'm writing from Canada and have just been diagnosed with Cardiomyopathy. I'm pretty sure the type of cardiomyopathy is dilated. I don't know my ejection fraction yet. I see my cardiologist on Tuesday April 21st so I should be able to post more information about myself after I have seen him.

I was treated with chemotherapy, radiation and a lumpectomy 6 years ago for left sided breast cancer. Everything has been good with my health since then except for this recent diagnosis of catdiomyopathy which some of the doctors think I may have gotten from the chemotherapy. I was on a drug combination called FEC which stands for the drugs 5-fluorouracil, epirubicin and cyclophosphamide. My recent symptoms included shortness of breath upon exertion, feeling tired, tightness in my chest, cough and wheezing especially while lying down.

When I went to the emergency department at the hospital because I couldn't breathe, the ECG showed atrial flutter/fibrilation and my lungs were full of fluid. They drained the fluid with the drug lasix IV and I felt much better very fast. I was in hospital for 10 days to get stabilized on the heart drugs. I never had another episode of atrial fibrilation once my lungs were cleared. The ecocardiogram I had while in hospital showed a weakened left ventricle.

The angiogram I had showed severe grade lV/lV global hypokinesis with a mild mitral regurgitation. Left ventricular end diastolic pressure is 26mmHg. Aortic root pressure is 91/57 mmHg. There is no pullback gradient across the aortic valve. Normal coronary arteries were identified. There is a significant left ventricular dysfunction in keeping with a cardiomyopathy. I have copied this information from my angiogram report.

The drugs I was discharged on are: ASA 81 mg. daily, Apo-Ramipril 5 mg. daily, Furosemide 20 mg. twice daily, and Carvedilol 3.125 mg. twice daily. I am feeling actually better now than I have been for a while. I guess the drugs are helping. I am restricting my sodium intake and am trying to limit my fluids to 1 1/2 to 2 litres daily but I am finding the fluid restriction somewhat difficult to maintain. I have always been active - resistance training 45 minutes 3 times per week, yoga once per week and I enjoy walking.

I am feeling frightened by this diagnosis and what the future will hold for me. I have always taken good care of my health and don't understand how this happened. I also take 100 mg COQ10 daily, Progressive ultimate fish oil daily, Vitamin D 1000 IU daily and Vitamost CHL which has red yeast rice extract in it to successfully control cholesterol. My total cholesterol is 4.3. I have also taken other suppliments in the past but I am not sure if I should continue with them as I don't know how they will interact with the heart drugs.

As I mentioned, I see my cardiologist on Tuestay April 21st and it would be very helpful if I had some advice from you before then so I can discuss it with him. I wish to do anything that will make my heart stronger and improve my health and I look forward to hearing your sugestions.

Thank you

Brig

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Bericht door Willy » vr apr 17, 2009 11:09 am

Hello Brig

Post extra information when you visited the cardiologist on the 21st

We then look into your case.
Met vriendelijke groeten,

Willy Witsel

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

Corrij (therapeut)
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Bericht door Corrij (therapeut) » wo apr 22, 2009 2:38 pm

Hello Brigitte,

At first welcome on this forum.
How was your visit at the cardiologist yesterday?

I can understand that your frightened, you`ve been throug a lot.
I believe there is a relation between this diagnose the radiaton and chemo.
Have you read some of the story`s here on the forum?Maybe it gives you a little courage.


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

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

brig
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Lid geworden op: ma apr 13, 2009 9:24 pm

Thank you for your welcome.

Bericht door brig » do apr 23, 2009 12:18 am

I saw my cardiologist yesterday and he said my ejection fraction is about 30%. He says I might be a candidate to have a defibrillator installed. I don't like the sound of that very much! He increased one drug that I am on - the carvedil 3.125 mg from twice per day to 3 times per day. He doesn't have any problems with me taking suppliments in addition to the drugs he prescribes. Thank you for telling me what supplements to start on. Are they compatable with the drugs I am already on? I have an appointment to see my cardiologist again at a heart failure clinic that he runs on May 6th. He talked about the possibility of putting me on coumadin to prevent possible blood clots. Isn't that rat poison? Anyways I plan to start the suppliments that you suggest and will keep you posted. I have read some of the other postings and plan to read more in the next few days. I have been feeling well since returning home from hospital on April 10th. I have returned to my yoga practice once a week and my daughter, who was always interested in this, is learning how to do energy healing to help me, bless her.

Sincerely,

Brig

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Bericht door Corrij (therapeut) » do apr 23, 2009 10:02 am

hello Briggitte,

What is Coumadin?


Warfarin is prescribed to people with an increased tendency for thrombosis or as secondary prophylaxis (prevention of further episodes) in those individuals that have already formed a blood clot (thrombus). Warfarin treatment can help prevent formation of future blood clots and help reduce the risk of embolism (migration of a thrombus to a spot where it blocks blood supply to a vital organ). Common clinical indications for warfarin use are atrial fibrillation, the presence of artificial heart valves, deep venous thrombosis, pulmonary embolism, antiphospholipid syndrome and, occasionally, after heart attacks (myocardial infarction).

Dosing of warfarin is complicated by the fact that it is known to interact with many commonly-used medications and even with chemicals that may be present in certain foods.These interactions may enhance or reduce warfarin's anticoagulation effect. In order to optimize the therapeutic effect without risking dangerous side effects such as bleeding, close monitoring of the degree of anticoagulation is required by blood testing (INR). During the initial stage of treatment, checking may be required daily; intervals between tests can be lengthened if the patient manages stable therapeutic INR levels on an unchanged warfarin dose.

When initiating warfarin therapy ("warfarinization"), the doctor will decide how strong the anticoagulant therapy needs to be. The target INR level will vary from case to case depending on the clinical indicators, but tends to be 2–3 in most conditions. In particular, target INR may be 2.5–3.5 (or even 3.0–4.5) in patients with one or more mechanical heart valves.

In some countries, other coumadins are used instead of warfarin, such as acenocoumarol and phenprocoumon. These have a shorter (acenocoumarol) or longer (phenprocoumon) half-life, and are not completely interchangeable with warfarin. The oral anticoagulant ximelagatran (trade name Exanta) was expected to replace warfarin to a large degree when introduced; however, reports of hepatotoxicity (liver damage) prompted its manufacturer to withdraw it from further development. Other drugs offering the efficacy of warfarin without a need for monitoring, such as dabigatran and rivaroxaban, are under development.


Coumadin is an anticoagulant (blood thinner). It reduces the formation of blood clots. It works by blocking the synthesis of certain clotting factors. Without these clotting factors, blood clots are unable to form.


Important information about Coumadin
This medication can cause birth defects in an unborn baby. Do not use if you are pregnant. Use an effective form of birth control, and tell your doctor if you become pregnant during treatment. Never take a double dose of Coumadin.
If you need to have a lumbar puncture (spinal tap) or any type of surgery, you may need to temporarily stop using Coumadin. Be sure the surgeon knows ahead of time that you are using this medication.

Carry an ID card or wear a medical alert bracelet stating that you are taking Coumadin, in case of emergency. Any doctor, dentist, or emergency medical care provider who treats you should know that you are taking Coumadin. Coumadin interacts with many other drugs, and these interactions can be dangerous, even fatal. Tell your doctor about all the prescription and over-the-counter medications you use. This includes vitamins, minerals, herbal products, and drugs prescribed by other doctors. Do not start using a new medication without telling your doctor. You should not take acetaminophen (Tylenol), aspirin, or NSAIDs (non-steroidal anti-inflammatory drugs) unless your doctor has told you to. NSAIDs include celecoxib (Celebrex), diclofenac (Voltaren), ibuprofen (Motrin, Advil), indomethacin, naproxen (Aleve, Naprosyn), piroxicam (Feldene), and others. These medicines may affect blood clotting and could cause serious bleeding in your stomach or intestines.
Avoid sudden changes in your diet. Vitamin K decreases the effects of Coumadin. Large amounts of vitamin K are found in foods such as liver, broccoli, brussels sprouts, spinach, Swiss chard, coriander, collards, cabbage, and other green leafy vegetables. Do not change the amount of these foods in your diet without first talking to your doctor.

Avoid eating cranberries, drinking cranberry juice, or taking cranberry herbal products.

Avoid drinking alcohol, which can increase some of the side effects of Coumadin.
Before taking Coumadin
Do not take this medicine if you have:
a bleeding disorder such as hemophilia;

a blood cell disorder such as anemia;

a stomach ulcer or bleeding in the stomach;

a history of aneurysm, blood clot, or bleeding in your brain; or

an infection of your heart, fluid or swelling around your heart.

FDA pregnancy category X. Coumadin can cause miscarriage, stillbirth, birth defects, or fatal bleeding in an unborn baby. Do not use Coumadin if you are pregnant. Tell your doctor right away if you become pregnant during treatment. Use an effective form of birth control while you are using this medication.
Before taking Coumadin, tell your doctor if you have:

kidney disease;
liver disease;
celiac sprue (an intestinal disorder);

a recent injury, surgery, or medical emergency;

high blood pressure;

severe or uncontrolled diabetes;

polycythemia vera;

congestive heart failure;

cancer;

overactive thyroid;

a seizure disorder for which you take an anticonvulsant such as phenytoin (Dilantin) or phenobarbital (Luminal); or

a connective tissue disorder such as Marfan Syndrome, Sjogren syndrome, scleroderma, rheumatoid arthritis, or lupus.

If you have any of these conditions, you may not be able to use Coumadin, or you may need a dosage adjustment or special tests during treatment.

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

brig
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Lid geworden op: ma apr 13, 2009 9:24 pm

About the coumadin information

Bericht door brig » do apr 23, 2009 6:29 pm

Well as far as contraindications go, I have had breast cancer and congestive heart failure. Are there not any natural supplements that work as well as coumadin like garlic and vitamin E? If I had atral flutter/fibrilation because of the conjestive heart failure, then maybe I won't need the coumadin if my cardiomyopathy is stable.

Thanks forthe information

brig

brig
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cardiomyopathy caused by chemotherapy and radiation

Bericht door brig » do apr 23, 2009 6:50 pm

If my cardiomyopathy is caused by chemotherapy and/or radiatin, can it be cured with your protocal?

brig

Corrij (therapeut)
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Bericht door Corrij (therapeut) » vr apr 24, 2009 10:29 am

Hello Brigitte,

Yes it can,

In the majority of cases of DCM the cause is not known. The condition is then termed idiopathic (no identifiable cause) dilated cardiomyopathy. There are, however, some factors that are accepted to cause or contribute to disease in individual circumstances.

Genetic/familial
All our heart proteins are coded by genes that we inherit from our parents. In the last decade, careful screening of families of DCM patients has shown mild abnormalities in at least a third of relatives, most of whom have no symptoms. There are as yet no good predictors as to who in a family might develop DCM. Family screening, with simple non-invasive ECG and echo tests, is usually offered to close relatives when a patient is first diagnosed with DCM. Gene tests are being developed but no simple test exists at present.

Viral infection
People encounter many viruses every day and, normally, the body’s immune system is very efficient at intercepting these viruses and neutralising them. However, a virus may in rare cases affect the heart of a normal person, often without other symptoms of the viral infection itself. This is called viral myocarditis and is commonly caused by a group of viruses called Coxsackie B viruses but the majority of people do not have any permanent damage to their heart. However, DCM may occur when the virus severely damages the heart during the initial infection, or perhaps when the virus triggers the body’s own defence system (immune system) to attack and damage the heart (see auto-immune disease below).

Auto-immune disease
The body’s own immune system is responsible for defending it against all foreign invaders, for example viruses and bacteria. However, sometimes this system malfunctions and starts to attack the body’s own tissues - this results in a so-called auto-immune disease. In some patients with DCM there is evidence of this process.

Excessive alcohol consumption and exposure to toxic compounds

Excess consumption of alcohol is known to be a cause of DCM. If excessive alcohol intake is stopped before serious damage to the heart has occurred, then the heart can recover. In some cases, however, the damage is too great and the DCM persists for life. Irrespective of the cause of their disease, patients with an established DCM are advised to abstain from alcohol or at least to limit consumption to minimal amounts.

Other chemicals such as certain anti-cancer therapies have been reported to cause cardiomyopathy in rare cases. It is difficult to predict who will develop this side effect, and heart function sometimes returns to normal.

Pregnancy
Uncommonly, women in mid to late pregnancy or soon after delivery can develop DCM. In this setting, the condition is termed peripartum cardiomyopathy and occurs in approximately one in 10,000 pregnancies. Some of these women may have DCM due to one of the other causes outlined above, but coincidence makes the disease first obvious during pregnancy, probably because of the extra demands placed on the heart. This type of DCM may persist long after pregnancy has ended.

In true peripartum cardiomyopathy, the condition resolves within six to eight weeks of the delivery in 50 - 60% of cases, but may recur in subsequent pregnancy. The cause of the occurrence or recurrence of peripartum cardiomyopathy is unknown.

Women who have not completely recovered are advised to avoid further pregnancies, as the risk of recurrence is 20-40%. Such recurrence can pose a substantial risk to the life of mother and baby.

For those women with DCM who become pregnant unexpectedly, it is also important to consider with your doctor stopping tablets such as ACE inhibitors and beta-blockers (see below) as they may damage the fetus - consult your doctor immediately.

The cause is different but the treatment is the same,

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

brig
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Lid geworden op: ma apr 13, 2009 9:24 pm

Bericht door brig » vr apr 24, 2009 5:34 pm

Hello Corrig,

Thank you again for the information on DCM. I have tried to find the Acetyl-L Carnitine in health food stores in my area but I have been told that it has been banned in Canada. Would you perhaps know why? I have seen others on your forum ordering this suppliment on the internet. Are you okay with this? Also I understand that certain brands are better than others. Is Now, Pharma Nord and Solgar the brands you reccomend? What if I can't find these brands on line?

I have been reading more of the forum postings and find them very encouraging. It really helps a lot to hear about real people who are dealing with the same issues as I am. I am so happy to that my daughter found your web site for me.

I continue to feel well. My energy level is pretty much how it was before I was diagnosed with DCM and I haven't even started on the MSM and Chromium GFT yet! I plan to start today. Yesterday I went for a 40 minute walk and had no symptoms. That was very encouraging.

Have a very nice weekend!

Sincerely,
Brig

brig
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acetyl L Carnitine versus L-Carnitine

Bericht door brig » za apr 25, 2009 12:00 am

Hello againCorig,

I'm sorry but I have another question or two. My daughter was able to find L-Carnitine by NOW brand where she lives but not acetyl L-Carnitine. What is the difference and should I only take aceytl L Carnitine. Also can I start taking it at the same time as the MSM and Chromium? I would like to if you think it's okay.

Thanks

Brig

Corrij (therapeut)
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Bericht door Corrij (therapeut) » za apr 25, 2009 2:26 pm

Hello Brigitte,

Acetyl-L-carnitine or ALCAR, is an acetylated form of L-carnitine. ALCAR has been claimed to be superior to normal L-carnitine in terms of bioavailability.

Other names for acetyl-L-carnitine include: acetyl-levocarnitine, acetylcarnitine, l-acetylcarnitine, levacecarnine, and ST-200.

Structurally, the difference between the acetyl-L-carnitine (ALC) and L-carnitine (LC) is that ALC is an LC molecule that also contains an attached acetic acid group. This structural difference is small, but it produces a considerable difference in the biochemical properties of the molecule and, consequently, in its effects on metabolism. Acetyl-L-carnitine can substitute for L-carnitine in fat metabolism; however, as described below, recent studies have resulted in identification of several biological characteristics that are unique to acetyl-L-carnitine .

The acetyl group on acetyl-L-carnitine can be donated to a specific acceptor molecule, choline, to form the neurotransmitter acetylcholine, which helps restore nerve function. This activity is believed to be at least partly responsible for the improved mental function that results from acetyl-L-carnitine supplementation in patients with cognitive disorders, including Alzheimer's disease, Parkinson's disease, Chronic Fatigue Syndrome, and other disorders of the nervous system. Additional studies supporting a neuroprotective role for acetyl-L-carnitine are those demonstrating an improvement in symptoms of peripheral nerve damage common to diabetic patients

The acetyl group can also be utilized for the production of energy in the Krebs cycle. This donation increases the availability of an important cofactor (CoA) required for the conversion of carbohydrates to energy. Sufficient amounts of carnitine, derived from acetyl-L-carnitine, are necessary to transport, toxic, non-metabolizable, short-chain fatty acids, out of the mitochondria, and thus to free up the cofactor, CoA. A deficiency in acetyl-L-carnitine promotes a corresponding decrease in this cofactor, and consequently impaired energy production from both fats and carbohydrates, thus affecting energy levels in all cells of the body.

ALC, but not LC, has been demonstrated to protect the nervous system, partly because it more readily is transported into the nervous system. Recent studies with humans have indicated many of the age-associated disorders involving the nervous system, such as depression, impaired cognition, and decreased mental alertness, may be at least partially a response to a deficiency in ALC.

ALC, but not LC, protects the mitochondria. A recent finding demonstrated that a deficiency in ALC affects the structure and energy-producing capacity of the mitochondria. The mitochondria are responsible for producing virtually all the energy required by the cell. Therefore any subtle change in their structure can have a tremendous effect on the cell's energy reserves. ALC has been demonstrated to revitalize mitochondria by restoring levels of a key mitochondrial component, a phospholipid known as cardiolipin, which is susceptible to age-associated reduction in levels. Cardiolipin can be envisioned as the glue that secures and organizes, or better yet, orchestrates, the energy-producing machinery of the mitochondria.

The acetic acid group on ALC allows it to enter the mitochondria more readily than LC and consequently more rapidly perform its beneficial effects An additional enzyme must act on LC before it can enter the mitochondria.

I prefer your starting the MSM and the chromium first, you must build up the MSM. When your taking 3000 mg of MSM a day then we add some others, like carnitine.

NOW, Pharma and Solgar are indeed the brands I recommend, but there are more brands that are good.

I found more then one firms in canada where you can buy acetyl carnitine,

https://www.nutritionfirst.ca/productdetails.asp?id=170

http://www.befit.ca/mvplcarnitine750.html

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

brig
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Re: Acetyl L-Carnitine

Bericht door brig » ma apr 27, 2009 3:40 pm

Thank you very much for those sites that sell Acetly L- Carnitine in Canada. On the site they only offer 750 mg and not 500 mg as you advised. Can I take 750 mg 2 times per day instead of 500 mg 3 times per day when I do get started? I have been taking the MSM 1000mg daily and Chromium GFT 200mcg for 3 days now and I plan to increase the MSM today.

Hi from Canada
Brig

Corrij (therapeut)
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Bericht door Corrij (therapeut) » ma apr 27, 2009 5:32 pm

hello Canada,
:D

If I was you I would take 2 x 750 mg= 1500 mg at the same time.
The same with the Taurine,

for example,

before breakfast 1500 mg taurine
before lunch 1500 mg carnitine

The Q10-chromium and MSM with your food.

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

brig
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Bloating and questions

Bericht door brig » za mei 02, 2009 4:53 pm

Dear Corrig,

I am now taking 3000 mg MSM and 200 mcg chromium daily as you suggested and I don't know if this is related but I have been experiencing some gas and bloating since I started the suppliments. Will this pass and should I do anything? I think I will decrease the MSM dose today and see what happens. I have also started the aceytl L-carnitine and plan to purchase the taurine today. Is there a difference between taurine and L-taurine? Does it matter which one I get? Also, when I was first signing up for this forum you asked me if I had a sweet tooth and I said that I didn't. Well lately I seem to have developed a craving for chocolate. Is this related to the cardiomyopathy?

Have a great day.

brig.

Corrij (therapeut)
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Bericht door Corrij (therapeut) » zo mei 03, 2009 9:19 pm

Hello Brigitte,

Yes this will pass, it is a side effect of the MSM.
It is a good plan to decrease the MSM and see what happen.

The natural forms of amino acids are typically the “L form”, as in L-arginine, L-cysteine, etc. Synthetic forms are denoted as “D forms”, such as D-Methionine and D-Carnitine. But there are 2 aminos that have only one form without these variations: Glycine and Taurine. These two aminos are sometimes called L-Taurine or L-Glycine, but are more properly called just “Taurine” and “Glycine”. Regardless of the name used, they are always natural amino acids.


Benefit Taurine for Heart Tissue

The function of taurine in the cardiac vascular system is extensive, and the mechanism is complicated. Taurine protects cardiac cells from injury caused by ischemia. This amino acid helps prevent endothelial dysfunction caused by hyperglycemia, hypercholesterolemia, smoking and homocysteine; suppresses the proliferation and calcification in vascular smooth muscle cells, promotes metabolism and excretion of cholesterol in animal models of hyperlipemia. Taurine mainly acts inside the cell. However, taurine transport system becomes aberrant in pathological myocardial and vascular tissues. In addition, taurine improves cardiovascular function in fructose-induced hypertension and an iron-overload murine animal models.

CHOCOLATE :D :D :D no this is not related to the cardiomyopathy, maybe it has something to do with being a women :D :D

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

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