Sharon Ley (Dilated Cardiomyopathy Post Pregnancy)

This forum is intended for international users to help them with the treatment of cardiomyopathy or heart failure.
Corrij (therapeut)
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Berichtdoor Corrij (therapeut) » Wo Feb 22, 2006 4:30 pm

Hi Sharon,

Could you let me know which supplements you have at the moment? Then I can
give you the dosage. the MSM you have to take throughout the whole day, the carnitine
you can take at once but on an empty stomach, meaning half an hour before dinner or two hours after.
The same counts for the taurine and the argine/ornithine. this is to avoid the amino acid competition.
These three you're not allowed to take at the same time.
the carnitine in the morning, the taurine in the afternoon and the argine/ornithine in the evening.

regards,

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

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Sharon Ley (Dilated Cardiomyopathy Post Pregnancy)

Berichtdoor Sharon Lekky » Zo Feb 26, 2006 3:13 am

Hello Corrij

Hope you're feeling much better now! Thanks for advice re doses!

My current list is (in order of introducing protocol, my meds listed first)

Dilatrend 25mg x2
Perindopril 4mg

CoQ10 100mg x2
Vit E 500mg
Vit C 3000mg
MSM 3000mg (I have been taking as one dose but will divide into 3?)
Chromium 200mg
Carnitine 1500mg
Taurine 1500mg
Alpha Lipoic acid 250mg
Magnesium 500mg

I haven't introduced arginine yet as have received no specific direction as yet. Please let me know what you think.

I HAVE BEEN FEELING HEAPS BETTER in last week or so since adding last four supplements. It could be that the higher dose of Carvedilol is now having an effect but I'm convinced the protocol has a lot to do with it. I can't tell you how much better I feel!

I know that in general the progress will be slow and up and down and right now I'm having an BIG UP but I feel like I've passed on to the next level of recovery, I can now really believe I could actually get on top of this.

Thank you, the words don't say enough, but I'm sure you understand how wonderful this is and how truly grateful I am. I can only imagine how much you and Willie dedicate to this, but you know you have offered such a powerfully positive and intelligent way forward for those of us lucky to have found you. I hope you have time to look after yourself too!
Big fat kiss to you and Willie
Sharon xx
Regards,

Sharon

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Marion
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Berichtdoor Marion » Zo Feb 26, 2006 10:48 pm

Hi Sharon,

Corrij is having a good time for herself, she is on holyday at the moment. :lol:
I do my best to give some answers in stet of her.

I’m also diagnosed with dilated cardiomyopathy and heart failure.
For 1,5 years I follow the advices of Willy and I feel better each month and I understand what you mean by saying “thank you is not enough!”

I’m very happy for you that you also feel better already! :D
I know the feeling of the carvedilol, my body reacts very strong at the beta blockers, a little bit to much means trouble for me! For now I use 2 x ½ x 6,25 mg. a day!
½ more is already too much for me! :(

The MSM I take 2 x 1000 mg. in the morning and 1 x 1000 mg. in the afternoon.
It gives energy so it’s good to take it during the day.

Your question about the arginine I leave for Corrij, she will be back next week.

Best wishes, Marion :P .

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Berichtdoor Willy » Ma Feb 27, 2006 1:52 pm

Corrij is on holiday but I am still here.

Follow Marion's suggestion for the MSM, wait a month with arginine. Lets first look how this works.

We are developping a method optimizing bioavailabilty of the supplements. This means that supplements sometimes will be taken WITH and sometimes WITHOUT food.

We will let you know when this info is available.

Maybe Marion can explain a bit about this, she started this discussion on the Dutch forum.
Met vriendelijke groeten,

Willy Witsel

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

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Marion
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Berichtdoor Marion » Ma Feb 27, 2006 3:10 pm

Hi Sharon,

Willy schreef:We are developping a method optimizing bioavailabilty of the supplements. This means that supplements sometimes will be taken WITH and sometimes WITHOUT food.


The supplements you better can take without food, Corrij already mentioned about:

Corrij (therapeut i.o.) schreef: the carnitine
you can take at once but on an empty stomach, meaning half an hour before dinner or two hours after.
The same counts for the taurine and the argine/ornithine. this is to avoid the amino acid competition.
These three you're not allowed to take at the same time.
the carnitine in the morning, the taurine in the afternoon and the argine/ornithine in the evening.


The amino acid also existed in meat, fish and milk products, that is why you better can not take these supplements together with this food.
The cells accept a certain amount of amino acid. At the moment they are satisfied (or do you say satiated? :-? ) the rest of the amino acid will be lost.
For we take so many supplements, it is a waste when they don’t come into the cells where we wanted them. :wink:

When you start with the arginine/ornithine, I got the special instruction of my orthomolecular doctor to take those on an empty stomach just before sleeping.

I hope I explained the matter clearly to you, in Dutch it is much easier :roll: , but by practicing I hope it will be better each time.

Regards, Marion :P .

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Sharon Ley (Dilated Cardiomyopathy Post Pregnancy)

Berichtdoor Sharon Lekky » Di Feb 28, 2006 1:37 pm

Hi Marion

Thanks for your reply!

Your English is great. I am ashamed to say I only speak one language - and sometimes I don't speak that very well!

Thanks for explanation of amino acid dosing. Makes sense.

I assume you have low blood pressure and the Carvidelol makes you dizzy? This was my problem. I started on 3mg x 2 a day and was so dizzy I had to hold my head to walk. This technique probably did nothing but it somehow felt better! I didn't think I would ever get to higher dose and it took me 4 months. I was so scared the first day I increased from 12.5mg to 25mg. The difference in dizziness was no worse, in fact much better than going from just 3mg to 6mg. Amazing how the body adapts. My doctor always increased my dose at night first so that I could sleep through the worst of the adjustment symptoms. I think after a few weeks or a month he would increase the daytime dose and by then I was more used to it. I have a strong feeling that the increased dose is really helping. I'm really noticing the improvement. This combined with the supplements which I can't imagine being without.

It's so great to hear that you continue to feel better each month. It gets easier to think positively when you are actually gradually beginning to feel better. And that positivity then makes you feel better too. I love this forum and all the brilliant folk in it! :D I don't use many faces because I don't understand many expressions.....sounds like a separate problem I have! :oops:

Thanks for your kind words,
Best
Sharon
Regards,



Sharon

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Berichtdoor Marion » Wo Mar 01, 2006 2:03 am

Hi Sharon,

Thanks for your compliments. :lol:

My blood pressure always has been low as I remember during my pregnancies. With the 2 x ½ x 6,25 mg. carvedilol I use now it is about 85 / 40 .
For a little while I tried 4 x ½ x 6,25 mg. sometimes I suddenly became dizzy and had to get down on my knees, otherwise I should fall.
When I took 3 x ½ x 6,25 mg. (I used that for 6 months or so) and my moving was more than just walking I get pain in my shoulders to my back and arms.
Therefore I get an catheterization to see if my aureole lying veins would be OK. These were perfect, open and clear.
I started physiotherapy in the hospital and the physiotherapist let me do some exercising to build up slowly during the pain I felt.
After 10 minutes or so the pain get away and I could go on with the training, this could be caused by the medication.
I discussed this with my cardiologe and he give me permission to get back to 2 x ½ x 6,25 mg.
Now I feel good and can do my exercises without problems.

However I understand what you mean and I’m happy for you that you can handle the doses of carvedilol now.

The feeling good gives a deeper dimension when I think about a year ago, I really had trouble with the cold and my condition was much worse than now.

The thing of the faces :-? (?), when I put the little hand on it, I can see left under in my screen the meaning of the maker of it :wink: (this say wink). I use it like I think it should be OK, but of cause I can be wrong too. :oops: (oops) It is a bit fun in sometimes serious matters. :roll: :D :lol:

Regards Marion :P
Laatst gewijzigd door Marion op Do Mar 02, 2006 6:32 pm, 1 keer totaal gewijzigd.

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Berichtdoor Marion » Do Mar 02, 2006 6:30 pm

Hi Sharon,

In my last message I made a mistake:
Marion schreef:
With the 2 x 6,25 mg. carvedilol I use now it is about 85 / 40 .


This must be 2 x ½ x 6,25 mg. :oops:

I also checked my blood pressure for the last few days and that is now 98 / 58, so a bit higher than with the 3 x ½ x 6,25 mg. carvedilol, witch gave the 85 / 40.

I change the carvedilol amounts, otherwise it is so confusing.

Regards, Marion :wink: .

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Sharon Ley (Dilated Cardiomyopathy Post Pregnancy)

Berichtdoor Sharon Lekky » Zo Mar 05, 2006 7:36 am

Hi Marion

That's great your blood pressure is up, it makes a big difference doesn't it? I felt very vulnerable (weak) when my blood pressure was so low I would get dizzy all the time. It affected me pyschologically as well as physically.

Can I ask if your cardiomyopathy is caused by pregnancy? My cardiologist believes mine is likely to be caused by pregnancy. He is not certain because it was nearly a year before I developed serious symptoms, although I had minor dizzy spells and palpitations right after my second daughter's birth in 2004. No one suspected CM, I suppose it is pretty rare.

I understand you've been on the supplements for a while and they're continuing to make you feel better. That's fantastic! Do you know if your ejection fraction has changed yet? I know it will take about two years for any physical improvements to show up but I wonder if the EF improves little by little in that time (if the treatment is going to help).

I was diagnosed last October and so this is still early days for me. My EF is about 27 and I'm on trial til April to see if my EF improves enough (min 35-40) that I do not need a defibrillator as my major symptom is tachycardia. Am trying to stay hopeful but also reasonable about all this.

Can I ask you if you know whether arginine/orthinine is arginine or arginine plus orthinine? I think this is the last major supplement that I have to take. All the other supplements have made such a difference to how I feel that I would be surprised if they weren't also helping my heart already.

How old are your children? I sometimes find it hard being a mother with heart failure (no kidding! even without heart failure!) Especially when my 16 month old girl, Sophie, decided to jump on my head while I was having a tachycardia episode :o I was actually relieved when the ambulance guys said they couldn't bring the kids! The things I'll do to get a break :lol: Too bad I never get much sleep in hospital, the ready made meals and hours of reading are great! Actually, tough as it can be, my girls really help me keep going and give me a good laugh at the same time.

Hope this finds you well, Marion.
Best
Sharon
Regards,



Sharon

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Berichtdoor Marion » Zo Mar 05, 2006 6:42 pm

Hi Sharon,

My cardiomyopathy is idiopathic, which means that they don’t know were it came from.
My kids are now 24 and 22 (I am 47 years old) so I don’t think it was caused by pregnancy :lol:
We are still searching. The rest of my body is quite healthy, blood pressure not to high, cholesterol is OK, my veins are good as I wrote you before and as far as I know I never had an heart attack. They do see small cicatrices at the back of my left ventricle, witch could be caused by an inflammation by an virus of bacteria’s.
At this moment we are concentrating ourselves in Lyme-disease (Borrelia bacteria). All my live I lived in an forest aria and many times I had to remove ticks! When you search in “Pubmed.com” there is many information about this.

However the supplements not only did their job in feeling better each time, also my heart is slowly recovering itself!
In the past two years the made 3 times an Echo:

1. 21-04-2004: dilatation LV/LA/RA (left ventricle an both atria) very bad systolic LVF and moderate RVF.

2. 01-12-2004 (I started in September with the supplements): dilatation LV/LA/RA
LVF. EF 20-25% The left ventricle was better than in April ’04. The Right ventricle was now light less instate of moderate less: better than in April
So everything was a bit better.

3. 11-11-2005: moderate dilatation LVF. EF 31%. The right ventricle is quit normal and everything gives an improvement! They did not mentioned the Atria any more!
So slowely my heart is getting better!:lol: :lol: :lol:

Of course there is much more to tell about these Echo’s. I can give you so many details because every time I ask a copy of the results so I can see for myself what the difference is!

My cardio log called this result amazing (we didn’t tell him about the supplements for we had bad experiences with one of his colleges, a woman that prefer to give me very bad medications in stet of bananas.
At the moment he tells us that the results are almost impossible, we start explaining him how we did this. Even then we do not expect much about it).

Arginine/ornithine is the two supplements together in one capsule. I have them from Solgar.

Your tachycardia, is this caused by speeding up your heart beat? I mean does your heart gets much quicker at that time and do you still feel that many times now?

I really can imagine that you get crazy sometimes with the kids around you, specially when you have your tachycardia! :oops:
For me the age your children have at this time was the most heavy period of my live, and no, I did not had a heart failure at that time! :wink:

In the same month they discovered my heart failure, I get two dogs, one puppy and one of 2 years, two Rottweilers! They give me the exercises I need so desperately. :D

Thanks to Willy we all have the possibility to get well again within a few years and that is much more than any doctor can tell me.
From the beginning I believed in it and slowly the prove is coming. It takes some discipline sometimes, but it is worth doing it.

Love Marion :P .

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Sharon Ley (Dilated Cardiomyopathy Post Pregnancy)

Berichtdoor Sharon Lekky » Za Mar 11, 2006 1:50 am

Hi Marion

That's great news about your atria and right ventricle! Amazing they have returned to normal in such a short time. And as you say, your left ventricle is improving slowly, a big difference from 20-31%. I suppose the LV takes longer because it is the hardest worker. You must feel so much better than in beginning.

Like you, I am otherwise very healthy (this always makes me laugh, "I'm really healthy apart from my HEART FAILURE!" I can imagine a comic character, perhaps a long-suffering old woman running a shop.."oh, don't mind me, I'm feeling fine, apart from my HEART FAILURE!" Sorry, sometimes I get carried away...my husband and I now joke about my perfect excuse to not do anything I don't want to anymore). Anyway, in all seriousness, it does help a great deal that we are otherwise healthy.

I've had three tachycardia's since I was diagnosed and started drug therapy last October. Before then, I was having them increasingly frequently. They were my only symptom and the clue that led us to a cardiologist. No swelling, breathlessness, fatigue and I was breastfeeding at the time and looking after Rosa (then just 4) and Sophie (then just 1). So it was amazing I had no fatigue with an EF of 25. But of course, this was only because my heart was compensating by dilating and this would not have gone on much longer. The tachy is a fast heartbeat over 100bpm (not due to exertion). My first in late January went to 146bpm for 15 mins, my second (Feb) 136bpm for 15 min, my last (three nights ago) 113bpm for 3 mins. I hope this is a trend, each time less duration and slower. But who knows.

It's likely I'll have a defibrillator implanted next month as my cardiologist was trialling me on drug therapy to see if tachys would cease. The problem is a tachy could develop into a cardiac arrest. I have a 10 in 100 risk of dying from this in a one year period. Some days those odds look OK and other days (like when I'm having a tachy and Sophie is leaping on my head) the odds seem alarming. At first I didn't want defibrillator as I'm convinced I'll get alot better over next two years and then won't need it (they are not removed) but now I can see that even if that is so, the defib could save my life in the meantime. So I'm coming to terms with it.

I'd never heard of the tick being a possible cause of CMP. Wow! Living in forest areas all your life must have been a healthy environment. Sounds beautiful. I live in Brisbane on the very edge of the inner city. It's quite green by world standards of cities but it is still a city and getting busier. I love it but often hanker for the bush or beach and we get away.

It's funny that we about the same age (I'm 40 this year) and you have grown up children and I have a baby and preschooler! I started late!

Thanks for info on arginine/orthinine. I just ordered a large quantity of pure arginine, maybe I can get pure orthinine too. I'll ask Corrij if this would work.

This post is long so I'll sign off. Lovely hearing from you Marion!
Best
Sharon x
Regards,



Sharon

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Sharon Ley (Dilated Cardiomyopathy Post Pregnancy)

Berichtdoor Sharon Lekky » Zo Mar 19, 2006 1:41 am

Hello Corrij


Trust you had a relaxing holiday!

I'm feeling much better on the protocol so far but just had two questions...

1. What form of carnitine should I be taking? I am currently taking L-carnitine but have since read about acetyl-l-carnitine and also carnitine tartrate. The tartrate is available in larger, more economic quantities but I don't know if it is a different form or just different name for same thing.

2. When can I start arginine/ornithine and in what doses? I have the l-arginine and l-ornithine in separate supplies.

Best
Sharon
Regards,



Sharon

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Berichtdoor Corrij (therapeut) » Zo Mar 19, 2006 4:59 pm

Hi Sharon,

Thank you, I have a great holiday :D

I `am very happy to hear that you`re feeling much better,the L-carnitine you`re taking is the right one.
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
Those who do not have enough time for good health,

will not have good health for enough time.

Sharon Lekky
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Sharon Ley (Dilated Cardiomyopathy Post Pregnancy)

Berichtdoor Sharon Lekky » Vr Mar 24, 2006 1:37 pm

Hi Corrij

Thanks for your advice. I am definitely feeling consistently better and feel sure that this is since stepping up the protocol.

I have two questions:

Is carnitine tartrate the same as l-carnitine? I'm currently taking l-carnitine but wonder if I can use carnitine tartrate when this supply finishes. I don't know if it is the same thing but just a different name, the info I read suggested this but I want to check with you.

Can taking the amino acids cause diarrohea? I've had a mild case for a few weeks since starting taurine. Don't want to stop taking it but want to know your advice (please :-? )

Hope all is well with you, your husband and all up there! I expect Spring has sprung! We are in autumn now and the terrific heat is waning, a bad cyclone north of us will hopefully be last of the season.

Best
Sharon x
Regards,



Sharon

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Berichtdoor Corrij (therapeut) » Di Mar 28, 2006 10:04 pm

Hi Sharon,

Glad to hear that the supplements are working well and that you're ok.
We are fine, thanks for asking.
I prefer the L- Carnitine because the L type gets absorbed by the body best, so I advice you to keep taking this one.
The diarhea you suffer with could also be because of the MSM. You can leave it out for a few days to
see if there is an improvement. As far as I know it's not influenced by amino acids.
Here in the Netherlands we are looking forward to the spring, it was for us a long and cold winter.
Luckily for us we don't have any hurricanes or typhoons here, I hope you haven't had any either.

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

will not have good health for enough time.


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