Sharon Ley (Dilated Cardiomyopathy Post Pregnancy)

This forum is intended for international users to help them with the treatment of cardiomyopathy or heart failure.
Sharon Lekky
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Dilated Cardiomyopathy Post Pregnancy (Sharon Ley)

Berichtdoor Sharon Lekky » Do Feb 02, 2006 8:34 am

Hi Willie,Corrij

Just letting you know how things are going here.

I stopped taking MSM after few days as I was getting palpitations. Found my MSM included artificial sweetener which I discovered (from another Forum fellow) can cause palp/s. Stopped MSM and palps stopped. Finally sourced pure MSM but haven't started yet as my doctor was increasing my dose of Dilatrend and I want to settle before introducing anything new.

So currently I'm on
Dilatrend 25mg x2
Perindopril 4mg x1
CoQ10 100mg x 2
Vit E 500mg x1
Vit C 1000mg x 2

I've continued to feel more energetic since taking supplements. However, last week I had my first episode of tachycardia in 14 weeks (since starting drug therapy) and was quite upset.

I'm being trialled for a defibrillator. Initially my doctor was going to wait 6 months to give drugs time to work but now there's possibility of bringing date forward. I'm wearing a holter monitor for 24 hours.

Really disappointed. I feel positive that given enough time my heart funtion will improve enough that I won't need defibrillator. I have only just reached the therapeutic dose of Dilatrend (Carvedilol) in the last week. Until two weeks ago I was on half dose.

I had an ultrasound on 19/01 which was about three months since diagnosis/therapy started.

My EF had gone from 25 to 27 which is negligable improvement but at least shows I'm not going backwards. My left ventricle has shrunk by half a centimetre! I was happy to take that as a step forward. But then the tachycardia episode. It's like snakes and ladders.

I feel uncertain about defibrillator. My doctors are fantastic and obviously wanting to err on side of caution but I would hate to have defibrillator and then not need it because my heart improves sufficiently. Of course, no one knows answer to this dilemma. My tachycardia went for 15 mins and didn't cause pain, dizziness or breathlessness but of course, it could be different if there's a next time.

Anyhow, hope you are both well. Depending on what happens over next week, I hope to start MSM soon.

Very best
Sharon
Regards,

Sharon

Corrij (therapeut)
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Berichtdoor Corrij (therapeut) » Vr Feb 03, 2006 1:06 pm

Hello Sharon,

I can imagine it is a big disappointment for you, but if after the necessary examinations it becomes clear that you can't do without
ICD than you'll have to take it.

The prognosis of a patient with cardiac arrhythmia is determined by the nature and the size of the underlying heart condition ,
in particular the extent of the damage of the left chamber muscle( ejection fraction) and independent of this the seriousness of
the cardiac arrhythmia itself.
If therapy with a beta-blocker is not sufficient and if you have an increased risk of sudden death because of chamber arrhythmia
then what should be considered is the implant of an internal defibrillator.
Was your heart rate very high during the tachycardia?

About your supplements I advice you to add a few,
L-Carnitine
Taurine
Alpha Lipoacid
Arginine/ornithine

If you feel up to this let me know then I can tell you the amounts and how to take them.

Regards,

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

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Berichtdoor Willy » Vr Feb 03, 2006 2:30 pm

Corrij is right, if your supplement list is not correct you are missing an essential part of the protocol.

Are you using dueretics?
Laatst gewijzigd door Willy op Zo Apr 09, 2006 1:31 pm, 1 keer totaal gewijzigd.
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Sharon Ley (Dilated Cardiomyopathy Post Pregnancy)

Berichtdoor Sharon Lekky » Zo Feb 05, 2006 3:09 pm

Hello there Corrij and Willie

Thanks for you email, Corrij. Of course, you're right about ICD and I have to balance positivity with being realistic. I see my cardio this week so we'll talk more now that he has results from holter monitor.

He was hoping to catch an episode of tachycardia to see if it was a ventricular tachy. I didn't have one in that 24 hr window. I've only had one in 16 weeks. My heart rate went up to 146 bpm and stayed around there, just under for 15 minutes. Apart from being terrifying now that I know I have cardiomyopathy, it didn't seem to adversely affect me physically. I wasn't dizzy, sweaty, breathless or in pain. I had normal energy immediately after. But of course, the question is whether the next one could go into cardiac arrest. A big question mark!

I am keen to step up my supplements and would like to know how much and when to take etc. I still haven't reintroduced MSM or chromium. Should I hold off on them? I only want to start one supplement at a time so I can monitor my response. So which order should I introduce the ones you recommend, which should we prioritize? Should I expect any adverse effects from any of these supplements?

Willie, I am not taking diuretics and do not seem to retain fluid.

Thanks again for being tremendous!
Sharon
Regards,



Sharon

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Berichtdoor Willy » Zo Feb 05, 2006 6:55 pm

At the moment you are only using Q10 to cure your heart disesase. That is not enough!!

MSM + chromium will buy some time but you have to use this time to also introduce the other supplements otherwise this will not have a happy ending in 1 - 2 years from now.

L-Carnitine
Taurine
Alpha Lipoacid

and because of you rithm problems also

magenesium.

Please also test your potassium level in your blood, ask your specialist.

this info will allow us to decide to put you on potassium supplementation.
Met vriendelijke groeten,

Willy Witsel

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Berichtdoor Willy » Zo Feb 05, 2006 7:03 pm

am keen to step up my supplements and would like to know how much and when to take etc. I still haven't reintroduced MSM or chromium. Should I hold off on them?

yes because in my opinion that are ONLY supplements which make you feeling much better at the moment. They do not cure cardiomyopathy however.
Met vriendelijke groeten,

Willy Witsel

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Sharon Lekky
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Sharon Ley (Dilated Cardiomyopathy Post Pregnancy)

Berichtdoor Sharon Lekky » Di Feb 07, 2006 3:20 am

Hi Willie

*Are you saying I should start again on MSM and chromium now or instead begin carnitine, taurine, alpha lipoacid, magnesium and introduce MSM/chromium later?

Until now, I've introduced one supplement at a time so I can see how it affects me. Plus I've not introduced anything new when I have been increasing my dosage of Dilatrend. Now I'm at therapeutic level of 25mg x2 per day so hopefully, that is now stable. Of course, this makes for a very slow progress with protocol.

*Should I start one at a time? If so, in what order should I introduce?

*What quantities and when should I take ie what supplements can I take together at the same time of day? I take my present supps all together.

*Also, as for POTASSIUM, my perindopril (ACE inhibitor) has warning against potassium supplements without doctor's permission. So I'm nervous about taking your MONKEY TEST.

Hope all's well with you, Willie
Sharon
Regards,



Sharon

Corrij (therapeut)
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Berichtdoor Corrij (therapeut) » Di Feb 07, 2006 10:17 am

Hi Sharon,

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 know you have to build it up slowly, because MSM detoxifies and it can cause headache, diarrhoea or tiredness.


Furthermore I would like to advice you to start with acetyl L-Carnitine 3x 500 mg a day.Then we will added a few more supplements after a week of two ,the carnitine must be taken on a empty stomach.

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.

Sharon Lekky
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Berichten: 33
Lid geworden op: Do Nov 24, 2005 3:07 pm

Sharon Ley (Dilated Cardiomyopathy Post Pregnancy)

Berichtdoor Sharon Lekky » Zo Feb 12, 2006 6:32 am

Hi Corrij

Thanks for your advice.

I've been on chromium 200mg, MSM (1500mg building up to 3000mg), carnitine (1500mg) for about 6 days now and have been feeling OK.

One question, should I take MSM or carnitine in divided doses or is it just as beneficial to take total daily amount at one time. It would be especially easier with carnitine, having to be on an empty stomach - mine is rarely empty!

Also, thought you might be interested to know that I had adverse affects to taking a carnitine preparation (Solgar) that is called Maxi-Carnitine and includes calcium. For the 2 days I took it I felt as though I was funtioning without betablockers, my heart rate was up all day. Then I read that one should avoid taking calcium supplements within 2 hrs of betablockers as the calcium reduces the effectiveness of b-blocker. I swapped to a pure carnitine prep and things were fine again.

I'm doing OK and looking forward to your next recommendations.

Hope you and Willie and all are well
Sharon
Regards,



Sharon

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Berichtdoor Willy » Zo Feb 12, 2006 1:19 pm

After introduction of MSM to its therapeutical dosis of aprox. 3000mg go as quickly as possible to the complete protocol.

<font color=red><B>At the moment chroom and MSM will provide more energy but will NOT prevent progression of CMP. A Q10 only protocol will only provide you a 30 - 40% change of success, I would not suggest taking a Q10 only approach!!</B></font>

<H4>Most important supplements for the treatment of Heart Failure (Cardiomyopathy)</H4>Q-10, carnitine and taurine are essential for the treatment of heart failure (cardiomyopathy). MSM and chromium can be used temporarily to gain more energy and can later gradually be discontinued if this were required. Vitamin C powder is also considered a important supplement because it is very cheap and provides so much extra protection against cardiovascular diseases.
<UL><LI><a href="http://utopia.knoware.nl/~wwitsel/main/artikelen/treatment.cardiomyopathy.heart.failure.2.html">Treatment Cardiomyopathy (Heart Failure) with Co-enzym Q10</A>
<LI><a href="http://utopia.knoware.nl/~wwitsel/main/artikelen/treatment.cardiomyopathy.heart.failure.3.html">Treatment Cardiomyopathy (Heart Failure) with L-Carinine</A>
<LI><a href="http://utopia.knoware.nl/~wwitsel/main/artikelen/treatment.cardiomyopathy.heart.failure.4.html">Treatment Cardiomyopathy (Heart Failure) with Q10 and Carnitine synergistic effects</A>
<LI><a href="http://utopia.knoware.nl/~wwitsel/main/artikelen/treatment.cardiomyopathy.heart.failure.5.html">Treatment Cardiomyopathy (Heart Failure) with Taurine</A>
<LI><a href="http://utopia.knoware.nl/~wwitsel/main/artikelen/treatment.cardiomyopathy.heart.failure.9.html">Treatment Cardiomyopathy (Heart Failure) with Vitamine C and E synergistic effects</A>
<LI><a href="http://utopia.knoware.nl/~wwitsel/main/artikelen/treatment.cardiomyopathy.heart.failure.14.html">Treatment Cardiomyopathy (Heart Failure) with Alpha-lipoic acid</A>
</UL><H4>Specialy usefull when Heart Failure (cardiomyopathy) is combined with arithmias</H4><UL><LI><a href="http://utopia.knoware.nl/~wwitsel/main/artikelen/treatment.cardiomyopathy.heart.failure.8.html">Treatment Cardiomyopathy (Heart Failure) with Magnesium</A>
</UL><H4>Supporting supplements for the treatment of Cardiomyopathy (Heart Failure)</H4><UL><LI><a href="http://utopia.knoware.nl/~wwitsel/main/artikelen/treatment.cardiomyopathy.heart.failure.10.html">Treatment Cardiomyopathy (Heart Failure) with Selenium</A>
<LI><a href="http://utopia.knoware.nl/~wwitsel/main/artikelen/treatment.cardiomyopathy.heart.failure.11.html">Treatment Cardiomyopathy (Heart Failure) with DHEA</A>
<LI><a href="http://utopia.knoware.nl/~wwitsel/main/artikelen/treatment.cardiomyopathy.heart.failure.13.html">Treatment Cardiomyopathy (Heart Failure) with Fish Oil</A>
<LI><a href="http://utopia.knoware.nl/~wwitsel/main/artikelen/treatment.cardiomyopathy.heart.failure.7.html">Treatment Cardiomyopathy (Heart Failure) with Growth Hormone Releasers: Arginine / Hexarelin</A>
</UL>
Laatst gewijzigd door Willy op Zo Feb 12, 2006 1:54 pm, 3 keer totaal gewijzigd.
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Willy Witsel

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Berichtdoor Willy » Zo Feb 12, 2006 1:21 pm

DHEA and Hexarelin are optional, the rest is not
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Willy Witsel

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Willy
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Berichtdoor Willy » Zo Feb 12, 2006 1:24 pm

Provide us with the specs of the supplements before you buy them. Go for the BIG brands.
Met vriendelijke groeten,

Willy Witsel

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Sharon Lekky
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Lid geworden op: Do Nov 24, 2005 3:07 pm

Sharon Ley (Dilated Cardiomyopathy Post Pregnancy)

Berichtdoor Sharon Lekky » Wo Feb 15, 2006 12:35 am

Hello Willie

Thanks for your powerful reminder! It's true that when one is feeling so much better that one can get too relaxed about going on with rest of protocol.

I've been taking things slowly as I've also had the big job of increasing my carvidelol from 3mg to therapeutic dose of 25mg x2. My blood pressure has been extremely low and progress has been slow but I'm finally there. I didn't want to start MSM too soon as I was scared of the initial tiredness, diarohea etc, as I already felt pretty shaky each time I increased my carvidelol. Also, it takes a while to get clearance from my doctor. My blood pressure is also much better which I hope is a good sign.

I'm really keen to increase my protocol supplements. I have already got the most of them ready to go.

Presently I am on

Dilatrend 25mg x2
Perindopril 4mg
CoQ10 100mg x2
Carnitine 1500mg
MSM 1500mg (try to increase dose today)
Chromium 200mg
Vit E 500mg
Vit C 3000mg

Please let me know as soon as I can introduce magnesium, alpha-lipoic and arginine.

Thanks for caring!
Best
Sharon :D
Regards,



Sharon

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Berichtdoor Willy » Wo Feb 15, 2006 1:52 pm

Oke introduce also Taurine, Magensium glycinate en Alpha Lipoic Acid

Taurine 3 x 500mg, ALA 200 - 300mg, magnesium 200 - 400mg

Wait with the arginine

Use BIG Brand names
Met vriendelijke groeten,

Willy Witsel

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Berichtdoor Willy » Do Feb 16, 2006 6:41 pm

Corrij is at the moment ill. But she will discus the "dosis" isue with you
Met vriendelijke groeten,

Willy Witsel

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