My First Post for Dilated Cardiomyopathy

This forum is intended for international users to help them with the treatment of cardiomyopathy or heart failure.
Douglas
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Arrhythmias

Bericht door Douglas » do jun 14, 2007 5:24 am

:-? I need to explain others first up, that as a result of my Cardiomyopathy, I suffer some fairly significant bad heart rhythms. Not every one does this.
My main concern is called Ventricular Tachycardia. (VT) the ventricles of my heart beat so fast, it can not fill with blood properly, so I may pass out.
I spend a large part of my life in Atrial Fibrillation (AF) which is uncomfortable but not life threatening while I am on Warfarin.

To deal with these issues, I have a Implanted Defibrillator, like a pacemaker, but as well as pacing it also can deliver a shock to restore the heart rhythm if needed. I have not had to have a shock yet, the machine is very clever and can actually over drive the VT and return me to a reasonably normal state.

:-? Why all this you ask? Well, it seems the Acetyl L Carnintine affects my heart rhythm. This is extremely unusual in fact I can find no record of it happening to anyone on the net. However if I take the full dose, my AF definitely gets worse, and I get more episodes of VT. :cry:

I stopped the carnitine, and my heart returned to normal (for me) AF with very little VT. After 3 days I resumed the Carnitine, and am at this point taking 1 x 500mg in the morning and all is seeming fine. 8)

In another day or 2 I will increase to 2 x 500mg a day, (morning and night) and see if I am OK on this dosage. Will keep you posted.

I will have a full set of blood results to post at the beginnign of July and will be very interested to see how they read.

Take care everyone. Be thankful, I have a friend whose brother in law has developed cardiomyopathy at 61, and the medical world just have given up on him. :x

Cheers
Regards,

Douglas Byles

Corrij (therapeut)
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Bericht door Corrij (therapeut) » do jun 14, 2007 10:32 am

Hi Douglas,

Thanks for sharing this with us, this is indeed very new for me.
You did the right thing, if 500 mg of Carnitine is oke for you then it will be 500 mg.

I will suggest that you keep it on 500 mg daily for a few weeks and then try to increase to 1000 mg.

Give your body some time to get used to it.

Its very sad to hear that the medicals give up on him, maybe you can tell him about the protocol :wink:

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

Douglas
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Progressing

Bericht door Douglas » vr jul 06, 2007 11:56 am

Hi all,
Things are going OK here. I am taking the Carnitine, MSM and Chromium and feeling OK.

Got a bit of a shock on Sunday when my defibrillator defibrillated me. The AF sped up my heart a bit too much :cry:

Still it fixed the rhythmn and it is now a nice sinus rhythmn once more. :lol:

When do I look at progressing on to the CoQ10 etc?

Hope all is well with everyone else.
Cheers 8)
Regards,

Douglas Byles

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Bericht door Corrij (therapeut) » vr jul 06, 2007 12:10 pm

Hello Douglas,

We can added the

Q10 2x 100 mg a day
Taurine 3 x 500 mg a day
Alpha-Lipioc acid 1 x 300 mg a a day

Next week or so I will give you a list with some other supplements so you can order them if you like :D

I`m going to Spain in about two weeks time, I`ll be there from 20 july untill the 5 of august.

But no fear,willy`s here :D

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

Douglas
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Update - Slow & steady wins the race.

Bericht door Douglas » wo jul 25, 2007 6:40 am

:D Howdy all,
Well I have been taking the next phase of the protocol for about 3 weeks now. Because of my arrythmias, I have started slowly, Taking only
1 x Coq10
1 x Lipoic Acid
1 x Taurine each morning.

An amazing thing appears to have happened. :o I believe the Taurine settles my arrythmias. I have read a bit on it and found a reference to this, (I think in one of the links off this website).

I am now taking 2 x Taurine (1 in morning and 1 in evening).
I still take MSM and Chromium. When I am up to the full 3 x day of Taurine, I will try the Acetyl - L _Carnitine again. But I am hesitant about this as it affects my heart beat so significantly.

I started on the new phase of the protocol, and some days later, had a thought during a work day, that went " I feel completely normal!".
:lol: This lasted a few days. I stopped the protocol to see what happened and my AF returned a bit. I restarted the protocol and my AF settled down.

I have occasional Ventricular jumps and bumps, but nothing severe.

I am looking forward to future progress.

Thank you so much.
:P
Regards,

Douglas Byles

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Bericht door Willy » wo jul 25, 2007 9:48 am

Excellent experiment!!

Please try the carnitine also again. Start with half the dosis and increase when AF is not showing up.
Met vriendelijke groeten,

Willy Witsel

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

Willy
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Bericht door Willy » wo jul 25, 2007 11:29 am

By the way did Corrij already introduce the "Monkey Protcol" to you to cure AF
Met vriendelijke groeten,

Willy Witsel

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

Douglas
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Monkey Protocol

Bericht door Douglas » wo jul 25, 2007 4:13 pm

No not yet?????
:-?
Woops Sorry. LOL just realised what you meant :lol:

Yes I have plentiful access to bananas, and they make my condition worse. So we have ruled out potassium.

I have blood results which I will post later tonight.

Byeeeeee! 8)
Regards,

Douglas Byles

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Bericht door Willy » vr jul 27, 2007 1:08 pm

that's the Monkey Protocol :lol:
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) » di aug 07, 2007 1:41 pm

Hi Douglas,

I am waiting for your blood results :D

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

Douglas
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Lid geworden op: vr apr 27, 2007 11:18 am
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Blood Results

Bericht door Douglas » di aug 14, 2007 2:29 pm

Hi I finally stopped being lazy and have got around to posting my bloods.

Cumulative Liver Function Test
Bili=11 ALP=87 GGT=55 ALT=63 ALB=43 TP=67

INR = 2.7

Cumulative Thyroid Function Test
TSH=0.25 FT4=19

Full Blood Examination
Haemoglobin 145
RCC=4.90
PCV=0.430
MCHC=338
MCV=88
MCH=29.70
RDW=12
Platelets=263 (x10)

White Cell Count=6.5 (x10)
Neutrophils=59%
Lymphocytes=29%
Monocytes=8%
Eosinophils=4%

Magnesium = 0.96mmol/L

Electrolytes
Na=139 K=3.7 Cl=104 HCO3=27 Urea=4.4 Creatnine=84

That's the lot.
Hope you understand them.

Doug. 8)
Regards,

Douglas Byles

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Bericht door Corrij (therapeut) » di aug 14, 2007 8:05 pm

Hi Douglas,

Thanks for your update.
I miss some results like,

cholesterol
triglyceriden
homocysteine
crp
fibrinogeen

The rest of your bloodresults are not bad.

TSH 0,25 is a little bit low 0,4-5.0 mU/l
FT4 19 is a little bit high 5.0 12.0 mg/dl

RDW 12 must been between 13-15

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

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Marion
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Re: Blood Results

Bericht door Marion » di aug 14, 2007 8:27 pm

Hello Douglas,

First I want to introduce myself to you :P
I'm Marion and I'm here on the Dutch forum.
Like you I fight to get my arrythmias under controle :cry:
Some times it looks like I'm on the winning side and than they appear again, so I have to look why :-? , what did or didn't I do that they come again :cry: So it is for me a real battle

I was also very curious about your blood results and special your potassium, because that really makes a different with me.
Douglas schreef:Electrolytes
Na=139 K=3.7 Cl=104 HCO3=27 Urea=4.4 Creatnine=84
Which one is your potassium?
Groetjes Marion :P

Douglas
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Bericht door Douglas » wo aug 15, 2007 1:07 am

: 8) Hi Marion,
Arrythmias, :lol: aren't they just so much fun :evil:
I have to work hard to control mine. The potassium is the Na=139 result.
For me, If I eat bananas, etc then I get worse arrythmias. Things I have found that help are
a)Definitely the Taurine.
b) Sleep. If I am not well rested, then my heart goes really erratic. If I stay up very late as I do when I am playing online games, then I pay for the next 24 hours with a bumpy heart.
c) The prescription carvedilol also helps somewhat.

Corrij, hi welcome back how was your holiday? Trust you are now well rested and ready to take on the universe :lol:

The results you asked for were not tested this time around.
I can find my cholestrol, from past tests. My wife hates it because it is always brilliantly low. (Something like 3.4 I think)
My cardioligist loves pointing out to students, that my arteries, etc cholestorol, triglycerides,etc are some of the best he has seen, and I still have this heart condition. :-?

I am feeling really good on the second phase of the protocol.

:P
Regards,

Douglas Byles

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Marion
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Bericht door Marion » wo aug 15, 2007 1:45 am

Hi Douglas :D ,

Yes, the arrhythmias keeps us busy and they strikes you on times you don’t like them at all, in busy times. :evil:

I noticed that the bananas gives you worse arrhythmias, so the only way to look if your potassium is quit high (and the course of it was the bananas) is to look at your blood.

I don’t think Na is Potassium, Na is the sodium, the value of sodium should be between 135 and 145 so 139 is a very good value.
I think the K is the Potassium (Corrij ?) and the value of Potassium should be official between 3.5 and 5.0 but for us ‘Cardiomyopathy-sufferers’ it is better if the Potassium is above 4.7….. So 3.7 is that much to low :roll:

For the moment your heart is in a better shape, so keep that the way it is, but when your arrhythmias start again, maybe you can tri a banana…. :wink:

The other good thing is that magnesium could be very good for you, this helps your cells to collect Potassium, but…… these advices I leave for Corrij and Willy, they know much more about these things.

We can shake hands about the health of the rest of my body, also my cholesterol and other important values are perfect, my blood pressure has been all my life low and I always was a very healthy girl.
Since I 'm young I always take a douche first real warm and than ice cold, because that is so good for the blood and the heart :roll: :o :lol:

I still feel myself healthy, it’s ‘only’ the heart that is not cooperating at the moment, but I’m working on it to get that well as well :wink:
Groetjes Marion :P

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