Diagnosed with cardiomyopathy and heart failure

This forum is intended for international users to help them with the treatment of cardiomyopathy or heart failure.
Louiss
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Diagnosed with cardiomyopathy and heart failure

Berichtdoor Louiss » Di Feb 16, 2016 6:05 am

First, I am afraid that I do not know Dutch, so I will need to post in English. I live in Colorado in the USA.

On 30 December 2015, I suffered an episode of syncope, fainting without any warning. I was treated at the hospital emergency department. All tests were negative except the EKG which showed a very large number of premature ventricular contractions. I was admitted to the hospital to further investigate that arrhythmia. Again, a number of tests were performed and all were negative except the echocardiogram showed a reduced ejection fraction (35-40). I then had a catheterization and angiogram which showed my blood vessels to be normal. That was followed by an electrophysiology study which showed a ventricular arrhythmia. Ventricular fibrillation was induced during the study, so I was fitted with an ICD device. I was diagnosed as having cardiomyopathy and heart failure.

I was released from the hospital with instructions to take the following medications:

Metoprolol Succinate ER, 12.5 mg, once per day
Lisinopril, 2.5 mg, once per day
Aspirin, 81 mg, once per day

I also take Omeprazole, 40 mg, once per day for GERD.

The electrophysiologist believed that the arrhythmia could be controlled through an ablation procedure. That was done on 4 February 2016. I was under general anesthesia for nearly seven hours, but the doctors were unable to reach the spot that would need to be ablated. The doctor then prescribed an anti-arrhythmic drug, Amiodarone HCl. I began taking that at 400 mg x3. The dosage is being tapered so by next week it will be 400 mg x1 The potential side effects of the Amiodarone are frightening, so I do not know if I want to continue to take it.

In doing research on alternatives, I came across this web site, and Willy has referred me to Corrij for advice. She suggested that I begin taking the following supplements:

2 x 100 mg ubiquinol a day
1500 mg acetyl-l-carnitine a day, always on a empty stomach
2 x 200 mg magnesium citrate a day

I have been taking those supplements for nearly a week now.

At present, my major complaints are fatigue, dizziness, weakness and extreme difficulty sleeping. There has also been some digestive distress since the Amiodarone was added.

I appreciate that this forum is available. I look forward to finding a more natural approach to treating and curing my heart issues.

Willy
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Re: Diagnosed with cardiomyopathy and heart failure

Berichtdoor Willy » Za Feb 20, 2016 4:09 pm

Hello Louiss English is not a problem

Do you want support from Corrij our online therapist on this forum

Here costs are NOTHING compared to the costs for supplements :D

She will assist you for two years

Here costs are aproximately 250 - 300 euro for consults via forum, skype, email
Met vriendelijke groeten,

Willy Witsel

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

Louiss
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Lid geworden op: Zo Feb 14, 2016 4:40 pm
Locatie: Colorado, USA
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Re: Diagnosed with cardiomyopathy and heart failure

Berichtdoor Louiss » Za Feb 20, 2016 8:31 pm

Willy, I think that support from Corrij would be beneficial. Should I contact here directly to arrange that?

Louis

Willy
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Re: Diagnosed with cardiomyopathy and heart failure

Berichtdoor Willy » Do Feb 25, 2016 4:54 pm

I only have to whisper her name here

c o r r i j
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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Re: Diagnosed with cardiomyopathy and heart failure

Berichtdoor Corrij (therapeut) » Do Feb 25, 2016 9:08 pm

Ha ha you call and here i am :D

Hello Louis,

Do you have problems falling in sleep?
You can try l theanine 300 mg half a hour before bedtime.

Millions of people will have trouble sleeping tonight. They won’t be able to fall asleep, won’t be able to stay asleep, or won’t feel like they slept. The primary reason is stress, followed by illness, inactivity, medications, and bad sleep environment. The net effect is a lot of grouchy, depressed, and accident-prone people.
Falling asleep is one thing; staying asleep and getting quality sleep is another. Researchers in Japan gave volunteers 200 mg of L-theanine daily and recorded their sleep patterns on devices worn around their wrists. The L-theanine didn’t cause the subjects to sleep longer, but it did cause them to sleep better. It was documented that sleep quality, recovery from exhaustion, and refreshed feelings were all enhanced by L-theanine. Those taking L-theanine felt like they slept longer than they actually did. This is good news for people who don’t get enough sleep, or those who want to sleep less and do more.

Further i want to add another supplement,

D-ribose 12-15 gram a day

Patients with congestive heart failure often experience fatigue despite intensive pharmacological therapy. Ribose can aid the recovery of ATP levels and, hence, diastolic function. Clinical trials have shown that ribose supplementation improves ischemic threshold and enhances diastolic function in congestive heart failure.

greetings,

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

Louiss
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Re: Diagnosed with cardiomyopathy and heart failure

Berichtdoor Louiss » Do Feb 25, 2016 10:49 pm

Corrij,

Thank you for these suggestions. I have already purchased d-ribose, assuming that it would be the next supplement added. I will start using it today.

With respect to sleep - yes, that has been a problem lately. I think my difficulties in falling and staying asleep are caused by the pharmaceutical prescriptions I have been taking. I sill certainly try l-theanine. I have an appointment with my cardiologist next week and I intend to discuss the medications with him.

I was also wondering how long I should expect it to be before I begin to notice some results from taking the various supplements. I think that I saw somewhere that it will probably take 2-3 month. Is that correct?

Louis

Corrij (therapeut)
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Re: Diagnosed with cardiomyopathy and heart failure

Berichtdoor Corrij (therapeut) » Za Feb 27, 2016 1:38 pm

Hello Louis,

Its hard to say but it can take a while before your ejecction fraction improve.
The next supplement we add to your list will be acetyl-l-carnitine.

This is a amino acid and you should take this on a empty stomach 1500 mg a day.

Have a nice weekend,

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

will not have good health for enough time.

Louiss
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Re: Diagnosed with cardiomyopathy and heart failure

Berichtdoor Louiss » Zo Feb 28, 2016 12:15 am

Corrij,

Thank you for this suggestion. Acetyl l-carnitine is one of the supplements you originally recommended, so I am already taking 1500 mg per day. I am also taking the coQ10, magnesium and d-ribose in the amounts you have suggested.

As always, I appreciate your assistance. I wish you a good weekend, also.

Louis

Louiss
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Re: Diagnosed with cardiomyopathy and heart failure

Berichtdoor Louiss » Za Jul 09, 2016 5:56 am

Corrij and Willie,

I haven't written anything recently because I have not had much to say. I now have a bit more information, so I will give an update.

I continue to take the magnesium, CoQ10, and d-ribose, as mentioned in the previous posts. I was also taking the acetyl l-carnitine until earlier this week. I seem to have developed a hypothyroid condition from having been prescribed a drug called amiodarone for about a month. The carnitine has some negative interactions with the added hypothyroid medication, so I have discontinued it temporarily.

A BNP test was done last month and the result, 72 pg/mL was well within the normal range. I believe that indicates that the heart failure has stabilized. With that positive result, another echocardiogram was scheduled. I got the results today, and learned that there has been no improvement in my ejection fraction. I was disappointed. I have an appointment with the cardiologist in about three weeks. I will see what comes of that.

I hope that you are well. I continue to appreciate your advice.

Willy
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Re: Diagnosed with cardiomyopathy and heart failure

Berichtdoor Willy » Ma Jul 11, 2016 7:26 pm

Did you experience negative effects from carnitine and thyroid drug or did you only have read about it?
Met vriendelijke groeten,

Willy Witsel

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

Louiss
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Re: Diagnosed with cardiomyopathy and heart failure

Berichtdoor Louiss » Ma Jul 11, 2016 7:36 pm

Willy, I only read about it. This is what I read:

"Interaction
"Carnitine acts as a thyroid hormone antagonist. This is confirmed in clinical research such as a study published in the November 2004 issue of the "Annals of the New York Academy of Sciences." The study found that carnitine prevents thyroxine and triiodothyronine from getting into your cells. These are your body's two primary thyroid hormones. Levothyroxine is a synthetic form of thyroxine, also known as T4.

"Considerations
"Acetyl L-carnitine is a beneficial substance that plays an important role in energy metabolism. Forms of carnitine are used to help certain cardiovascular conditions and diabetic nerve damage. However, all forms of carnitine have the capacity to reduce the effectiveness of levothyroxine, which can complicate your condition. Avoid taking any form of carnitine if you are on levothyroxine. There is usually no need to restrict dietary intake, but consult your doctor if this is a concern."

I followed that up by doing some additional research, which confirmed the statements.

Willy
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Re: Diagnosed with cardiomyopathy and heart failure

Berichtdoor Willy » Ma Jul 11, 2016 9:19 pm

Try shifting your thyrax drug to early morning, and take your caritine in one dosis before bed time

Or in seperate dosis during the night

See if your TSH bloodvalue stays the same

Then this solution works

Or......

The brute way

Take some more tyrax to offset the effect of carnitin
Met vriendelijke groeten,

Willy Witsel

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

Louiss
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Berichten: 9
Lid geworden op: Zo Feb 14, 2016 4:40 pm
Locatie: Colorado, USA
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Re: Diagnosed with cardiomyopathy and heart failure

Berichtdoor Louiss » Ma Jul 11, 2016 11:51 pm

It seems worth a try to move the carnitine to the nighttime. Thanks.

Willy
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Re: Diagnosed with cardiomyopathy and heart failure

Berichtdoor Willy » Zo Jul 09, 2017 10:44 am

How is your health now?
Met vriendelijke groeten,

Willy Witsel

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

Louiss
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Berichten: 9
Lid geworden op: Zo Feb 14, 2016 4:40 pm
Locatie: Colorado, USA
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Re: Diagnosed with cardiomyopathy and heart failure

Berichtdoor Louiss » Zo Jul 09, 2017 7:07 pm

Willie, thank you for asking. In some ways, my health is better. For instance, I am exercising more (walking, yoga, qi gong, weight training, etc), I am able to drive more and I I spend more time with my grandchildren. However, my ejection fraction has dropped from 35-40% 18 months ago to 20-30% 90 days ago, and my heart is looking worse on the echocardiogram than it did.


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