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
Ervaren met het forum
Berichten: 33
Lid geworden op: Do Nov 24, 2005 3:07 pm

Sharon Ley (Dilated Cardiomyopathy Post Pregnancy)

Berichtdoor Sharon Lekky » Vr Apr 07, 2006 10:57 am

Hi Corrij
Thanks for your advice. The diarrohea has passed, I think I had a low level virus.

Is there a difference between acetyl l-carnitine and l-carnitine? Sorry to be pedantic but I want to make sure I have it right. Which of these two should I be taking? I have been taking the l-carnitine (not acetyl l - carnitine). I'll stay away from the carnitine tartrate.

I had a disappointing ultasound today. My EF has dropped from 27 in Jan to 20. Also my left ventricle has dilated more. I was totally shocked as I have been feeling so much better. My cardiologist says that the numbers are always a bit fuzzy, not exact and that EF can vary even over a 24 hour period but he would have been happier if it had been the same or gone up.

So I'm definitely getting the defibrillator (ICD) on the 27th April and I'm very ready for it. Now I'm worried that my heart will continue to deteriorate. Have you heard of anyone's EF going down but then going up again? My doctor says it's possible but I didn't feel very convinced. I wonder if the three tachycardia's I've had since my January ultrasound had strained my heart. Is there any possibility that you know of that the supplements could be reducing the effectiveness of the Carvidelol? My pharmacist knew of no problem there. The crazy thing is that I'm feeling so much better than 3 months ago but I wonder if that's just that I'm accustomed to the Carvedilol.

Sorry, alot of questions but I just wonder if you have any thoughts...


Best
Sharon
Regards,

Sharon

Corrij (therapeut)
Verslaafd aan het forum
Berichten: 3948
Lid geworden op: Do Mei 19, 2005 10:46 pm
Contact:

Berichtdoor Corrij (therapeut) » Za Apr 08, 2006 8:11 pm

Hi Sharon,

I can imagine the disappointment. And I think it's a good idea they give you a defibrillator to prevent something serious like
cardiac arrhythmia or a cardiac arrest.
I think that your tachycardia is the cause of your EJF getting worse.The impact of cardiac arrhythmia increases when it happens in a damaged heart.
The more serious the damage of the heart, the more the bigger the chance that the arrhythmia will have serious consequences.
Frequent and long lasting tachycardia can lead to enlargement if the heart and pump failure.

But you also write that you feel well, and you have to hold on to that feeling Sharon. You have a setback, but nothing prevents you to
keep following the path you are on and improve the condition of your heart. I'm convinced that in half a years time your ELF is much better.

L-acetylcarnitine is the active form of carnitine. You can also use this and the dosage is then 500mg a day. You can also double the amounts for a while.
The reason that we advertise the L-carnitine is because the Dutch forum users get there money back on it, and that's great because it's
quite expensive.

Regards,

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

Willy
Verslaafd aan het forum
Berichten: 12945
Lid geworden op: Di Okt 09, 2001 3:00 am
Locatie: Exloo
Contact:

Berichtdoor Willy » Zo Apr 09, 2006 1:24 pm

I would suggest 3 x 500mg acetyl-carnitine.

Please provide us a list with supplements you use , manufacturer and daily dosis
Met vriendelijke groeten,

Willy Witsel

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

Willy
Verslaafd aan het forum
Berichten: 12945
Lid geworden op: Di Okt 09, 2001 3:00 am
Locatie: Exloo
Contact:

Berichtdoor Willy » Zo Apr 09, 2006 1:36 pm

Dec 28 2005

Sharon Ley schreef:Hi Corrij

I started using MSM (750mg of powder x 1 per day) three days ago. So far I have not experienced any side effects so will take two doses as from tomorrow. Haven't started chromium yet. Thought I'd wait til I get to full dose of MSM. My doctor said she couldn't see why I couldn't take them and along with your advice that's enough for me.

We've just got through a hot and hectic Christmas and strangely, I've felt quite relaxed and energetic - could be the supplements are working already!

Thanks for being so tuned in - even over Christmas!

Best
Sharon


After that you introduced Q10. This was your list of feb 2 2006

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


Then came my warning! on feb 5 2006

Willy schreef: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.


Your message from feb 12

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

still missing essnetial supplements of the protocol

Willy schreef: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>


You started with arginine around march 19th

Corrij (therapeut i.o.) schreef:Hi Sharon,

You can start with the arginine/ornithine,you should take them at night before you go to sleep,1500 arginine and 750 ornithine.

greetings,Corrij


SO THE BOTTOM LINE

Do not worry, you only started the recovery protocol ONE month ago, before that you used only MSM and chromium which provided you more energy but will not cure cardiomyopathy.

So after you started in nov 27 2005, your condition got worse. Only now you started the full protocol what may provide healing of your heart condition.
Laatst gewijzigd door Willy op Zo Apr 09, 2006 1:54 pm, 4 keer totaal gewijzigd.
Met vriendelijke groeten,

Willy Witsel

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

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

Sharon Ley (Dilated Cardiomyopathy Post Pregnancy)

Berichtdoor Sharon Lekky » Zo Apr 09, 2006 1:42 pm

Oh Bless you Corrij!

Thank you for your speedy email. I've had a few nights of little sleep with the anxiety and of course, now actually feel as bad as my ultrasound results! But I know I'll feel much better after a good nights's sleep.

What you say makes perfect sense, I was unable to ask this of my cardiologist largely due to my shock and having little time with him.

Also, I noticed that many forum folks usually quote a range for their EF (eg 25-35) rather than a single figure. That sounds more meaningful.

I don't know about other forum users, but I find it so hard to get much info that is not medical journal style and incredibly depressing. That's why it's literally life-saving to have you folks in the forum.

I'm actually now looking forward to having a little mechanical guardian angel in my chest (wow, that's a massive leap from not long ago!)

You're so right about trusting how my body feels and staying positive. I know it but it's powerful to hear it.

Thanks for advice re acetyl-l-carnitine. Got it now! I'm curious, am I right in assuming that the Dutch government is subsidizing its use and therefore officially recognises it therapeutic value? We have a long way to go here, even something as scientifically supported and undeniably beneficial as coQ10 has not been mentioned to me in any medical setting. I feel very lucky about the quality of medical care we have in Australia, but there's still such a big gap with complementary therapies.

Anyhow, am going to RELAX now.

Thank you thank you again,
Best,
Sharonx
Regards,



Sharon

Corrij (therapeut)
Verslaafd aan het forum
Berichten: 3948
Lid geworden op: Do Mei 19, 2005 10:46 pm
Contact:

Berichtdoor Corrij (therapeut) » Di Mei 02, 2006 4:01 pm

Hi,Sharon,

You`re very quit on the forum.
Have they implanted the ICD?
I know the planning was 27th April.
How are things going right now?
Do you feel ok?

Hope to hear from you soon,

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

will not have good health for enough time.

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

Sharon Ley (Dilated Cardiomyopathy Post Pregnancy)

Berichtdoor Sharon Lekky » Vr Mei 12, 2006 7:18 am

Hi Corrij

Thanks for your concern!

Yes I had the ICD implanted on 27th and I'm doing OK. It's taking me time to get used to the feeling of the device, it's quite heavy but I'm sure my brain will rewire to ignore this. It does feel good to have this extra protection. My risk of sudden death is a lot less now and I can focus more on the heart failure side of things :lol:

Physically I am a bit tired, probably recovering from surgery and a bout of tonsillitis following but not too bad.

Emotionally it has been a big month, starting with the poor ultrasound results on April 7 and my cardiologist's first mention of the words "heart transplant". I always knew this was a possibility but it was scary having him raise it. But he doesn't think I'm a candidate now and is hopeful that I may not be. It's also been really hard getting my head around having a foreign object in my body but I notice it less and less.

Good news. Just before surgery, a last ultrasound showed an EF of 24 and my LV back down to 68mm (scary scan was EF20, LV 75mm), so whether there's really been any change or just that I'm not actually going backwards, it's reassuring.

More good news is that now I have ICD, my doctor feels comfortable giving me a stress test (later this month). Pending the results of this, I can participate in a new cardiac rehabilitation program for heart failure people. It goes for 8 weeks and I hope to improve my fitness and confidence during this time and continue at home after.

I haven't had a tachycardia for 10 weeks now and I'm convinced it's because of the magnesium I started about 12 weeks ago. The last tachy I had was much shorter and slower than previous ones.

I have one question Corrij, which you might know something about. Apparently I now have a higher risk of blood clots forming along the leads that go through subclavian artery into heart. Doctors use warfarin if a big clot develops. I'm wondering about the safety and effectiveness of taking fish oil as a general blood thinning preventative. What do you think?

My cardiologist has doubled my night dose of Carvedilol to 50mg which I am tolerating well.

That's about it really, thanks for your great help through this.

Hope you and Willi are well!
Best
Sharon

PS Great news about Johnny Bayonne!
Regards,



Sharon

Corrij (therapeut)
Verslaafd aan het forum
Berichten: 3948
Lid geworden op: Do Mei 19, 2005 10:46 pm
Contact:

Berichtdoor Corrij (therapeut) » Za Mei 13, 2006 9:34 pm

Hi Sharon,

I'm glad to hear you're all right and that they've implanted the defibrillator.
Of course you have to get used to it because it's a foreign object, but try and see it as a friend.
A friend that helps you and because of this friend you run less risks and thank god for this technology.
After a while you probably won't realise it's there, it becomes part of you.

Do you have any results of blood tests?
Do they ever check your potassium/natrium and magnesium?
Cholesterol?
Triglycerides?
how is your blood pressure?
I agree with you that magnesium prevents more tachycardia. Lack of magnesium and potassium are usually the cause, and if you replenish it, that usually solves the problem.
A natural blood thinner is vitamin E. Fish oil too, make sure you use a good EPA/DHA product, for instance super EPA from the make NOW.

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

will not have good health for enough time.

Corrij (therapeut)
Verslaafd aan het forum
Berichten: 3948
Lid geworden op: Do Mei 19, 2005 10:46 pm
Contact:

Berichtdoor Corrij (therapeut) » Wo Mei 31, 2006 10:34 pm

Hi Sharon,

Can you let me know how things are going?

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

will not have good health for enough time.

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

Sharon Ley (Dilated Cardiomyopathy Post Pregnancy)

Berichtdoor Sharon Lekky » Ma Jun 05, 2006 2:57 pm

Hi Corrij

Just saw your messages..thank you! Been off line for a while.

After a murky (grey, foggy) few weeks after surgery, I now feel pretty good. Actually really good.

I think recovering from surgery took a little while, physically and psychologically. I no longer notice the weight or sensitivity of the device and am enjoying benefits like spending some time alone with my children.

Got some acetyl l carnitine and taking 1500mg as recommended by Willie, so I guess it's equivalent to double or more of l-carnitine. I had run out of supplies just after surgery and didn't have for a few weeks. I'm noticing a big difference now I'm on it.

Just had a stress test and the preliminary results show that my exercise tolerance is within the normal range for a healthy adult of my age! I'll get more details when I see my cardiologist in July but the testing doctor said he was surprised that I did so well given my EF. Sounds familiar? :wink:
So I'm in the low end of normal but I haven't exercised for 8 months on the advice of my doctor (was worried about my low EF and tachycardias and high risk of cardiac arrest) and this probably reflects general lack of fitness. I walked out feeling invincible!

My blood pressure is about 100/65 usually. Sometimes drops a bit but I'm less wobbly when it does.

Since I doubled my night dose of Carvedilol (50mg) I wake up feeling really rested. The very first night! First time in over a year as I think my resting pulse was too high.

I had blood tests before surgery and everything was normal but I don't know specifically about the things you asked. Next time I see my doctor I'll request detailed test.

Still no tachycardia that I have detected. I think it's three months since last little one which was just after I started magnesium.

I start my exercise program at the hospital in a few weeks and am really looking forward to getting fit.

People are remarking that I look much better, as good as before I got this condition. My face is less drawn and skin is rosier.

Anyhow, I always write so much :roll: so will sign off, I know you are busy people!

Thanks for your concern and advice re blood thinning oils.

Big hug to you and Willie
Sharon
Regards,



Sharon

Corrij (therapeut)
Verslaafd aan het forum
Berichten: 3948
Lid geworden op: Do Mei 19, 2005 10:46 pm
Contact:

Berichtdoor Corrij (therapeut) » Vr Jun 09, 2006 10:38 am

Hi Sharon,

I am very glad to hear that you`re feeling good .
Please keep us informed :D

You never write to much,I like reading your story,its the only way to have contact :D

greetings,Corrij

By the way,thank you for your kind words :wink:
Those who do not have enough time for good health,

will not have good health for enough time.

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

Sharon Ley (Dilated Cardiomyopathy Post Pregnancy)

Berichtdoor Sharon Lekky » Ma Jul 03, 2006 9:46 am

Hi Corrij, Willie, Marion

Just a quick note to say I've started cardiac rehab classes esp for heart failure and so far am feeling really good!

I doubt much has changed with my EF but I worry less about it and more about how I'm feeling. Life is feeling almost normal (apart from shovelling tons of capsules down my throat each day but hey! bring them on!)

Hope you beautiful folk are well,
Sharon xxx
Regards,



Sharon

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

Sharon Ley (Dilated Cardiomyopathy Post Pregnancy)

Berichtdoor Sharon Lekky » Wo Aug 30, 2006 10:32 am

Hi Folks

Just a quick question from me: is it OK to substitute R-alpha lipoic acid for alpha lipoic acid? If so, what is the dose?

I've finished Rehab and am about to venture out on my own with my fitness program. I'm feeling much more positive and my health seems to be on an even keel.

Hope you're all well.
Best,
Sharon
Regards,



Sharon

Corrij (therapeut)
Verslaafd aan het forum
Berichten: 3948
Lid geworden op: Do Mei 19, 2005 10:46 pm
Contact:

Berichtdoor Corrij (therapeut) » Wo Aug 30, 2006 10:43 am

Hi Sharon,

I am very glad to hear that youre feeling almost "normal :D "

I must say that I don`t know the R alpha-lipioc acid so I recommend the alpha-lipioc acid.

Maybe Willy can give us the answer?

Keep positive,youre doing great,I am proud of you :D

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

will not have good health for enough time.

Gebruikersavatar
Marion
Verslaafd aan het forum
Berichten: 1163
Lid geworden op: Za Jul 24, 2004 12:49 am
Locatie: Maarn
Contact:

Berichtdoor Marion » Vr Sep 01, 2006 2:35 am

Hi Sharon,

I'm very glad to hear your possitive message's :lol:

I agree that sometimes you get the feeling life existed for a great part of the day of taking capsules, but what we get back for it makes it feel sensible. :wink:

all the best,
Groetjes Marion :P


Terug naar “Treatment Heart Failure (cardiomyopathy)”



Wie is er online

Gebruikers op dit forum: Geen geregistreerde gebruikers en 1 gast