dilated cardiomyopathy

This forum is intended for international users to help them with the treatment of cardiomyopathy or heart failure.
Guido
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Lid geworden op: di okt 25, 2005 7:02 pm

dilated cardiomyopathy

Bericht door Guido » za feb 25, 2006 10:49 pm

Hi Willy and Corrij,

I have written you in the past but unfortunately was having problems in accessing your (English) forum.

I would like to update you on my situation and see what you would recommend for me to do in order to improve my health. This past December I underwent an experimental treatment with stem cells. My own stem cells were injected in my heart. Although it takes at least three months for the stem cells to hopefully improve my heart, I already know from my last visit with my doctor that my EF has improved from 34 percent to 36/37 percent. It is not a lot, but there is still room for improvement.

Let me also remind you that I am 43, Italian, living in Los Angeles, and I'm in fair shape. I'm 1.72 m and I weigh 68 K. I have a fairly normal, active life with no major symptoms except arrythmia and palpatations that normally occur at night (after the surgery it seems to have increased).

Let me also list the medications I'm taking:

Coreg: 9mg 2 times a day
Inspra: 25 mg 1 time a day

And recently went off Lasix & Cozaar

I'm also taking the following supplements:
Arjun bala, Ashvagandha, shata gudichi - 4 capsules a day
Hawthorn Berries Extract (1.8 percent Vitexin) - 3 capsules a day
Multi-Vitamin supplement - 2 times a day
CoQ10 - 100 mg. 1 time a day
Magnesium Citrate - 400 miligrams 1 time a day

Recently I started drinking a tea for my arrythmia which I got from the Indian herbal shop which is a mixture of cammomile, hawthorn, hops, mother wort

I would really like to have some guidance regarding how I can improve my condition and get rid of the arrythmia.

I know that the drug I'm taking, Inspra, does not allow me to take Potassium supplements. I was afraid that I might be short on Potassium, but my recent tests at the doctors said it was fine.

Thank you very much for your time, and I'm looking forward to re-posting!

Best Wishes,

Guido Santi

422 N. Hayworth Ave. #7
Los Angeles, CA 90048
Regards,

Guido

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Marion
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Bericht door Marion » zo feb 26, 2006 11:25 pm

Hi Guido,

Welcome to this forum (again as I understand)

Corrij is at the moment on holyday so I try to give you some answers till she is back (next week).
Exiting that you have stem cells I’m really curious what that will do to your hart!

I’m also diagnosed with dilated cardiomyopathy and heart failure and always willing to hear news about possibilities of other methods.

I don’t know what Corrij advised you in the past, so I think it’s better to wait till she is back.
Guido schreef: Recently I started drinking a tea for my arrythmia which I got from the Indian herbal shop which is a mixture of cammomile, hawthorn, hops, mother wort

I would really like to have some guidance regarding how I can improve my condition and get rid of the arrythmia.

I know that the drug I'm taking, Inspra, does not allow me to take Potassium supplements. I was afraid that I might be short on Potassium, but my recent tests at the doctors said it was fine.
One year ago I had to go to the hospital for having constantly arrhythmia.
My potassium was at that moment 4.2, witch is the good norm for potassium.
After eating 2 bananas the arrhythmia disappeared (after suffering me for 12 hours!)
We asked the hospital the list for all my potassium of the past year I was in that hospital. It seemed that it was the lowest norm ever seen in my blood of potassium. Since then I eat about 3 bananas a day and I hardly have any arrhythmia.
You also wrote that you can not take potassium supplements with the Inspra, does that also counts for bananas? Otherwise this is something you can try out !? :-?

Next week is Corrij back again, I am sure she have much more and better suggestions for you.

Best wishes, Marion :P .

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Marion
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Bericht door Marion » ma feb 27, 2006 3:48 pm

Hi Guido,

Forget what I wrote about the bananas!
I read about Inspra and I think you have to take care with this medication. :o
I can not give you a link to the information I got because those are in Dutch.
My specific attention gets the risk of losing potassium, witch you mentioned as a possible reason of your arrhythmia.
In the information I also found that they give Inspra instead of Spironolacton. I use Spironolacton and I am quite satisfied about it.
See if you can find information in English, maybe you can find the reason of your arrhythmia.

The last suggestion I can give you is to split the pill Inspra and take 2 x 12,5 mg. a day. I also do that whit the Spironolacton in consultation with my cardiolog.

Regards, Marion :P .

Sharon Lekky
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Lid geworden op: do nov 24, 2005 3:07 pm

Stem Cell Treatment

Bericht door Sharon Lekky » zo mar 05, 2006 7:49 am

Hi Guido

I just saw your post and that you have had stem cell treatment. I've only just heard about this and have never spoken to anyone who has had treatment.

Would you mind briefly explaining what it involves? Does it require ongoing sessions and are there side-effects or reasons why some individuals cannot use it?

I was diagnosed with dilated cardiomyopathy (post pregnancy) last October and since then have been on standard medications and the nutritional protocol developed here. So far I feel much better than last year but I'm keen to know of anything else that could help. I know there's information on the net but would really appreciate a real live human perspective!

Hope you're feeling well and those stems cells continue to do their job!
Sharon Ley
Regards,

Sharon

Gast

dilated cardiomyopathy

Bericht door Gast » di mar 07, 2006 3:49 am

Hi Marion and Sharon,

About my stem cell treatment...

It all started about 8 months ago when I contacted an American cardiac surgeon who is a pioneer in stem cell research. His name is Dr.Amit Patel and works at UPMC in Pittsburgh. I met with him and he told me about this very experimental treatment that possibly would help me. I had to make that decision on my own though. My decision was based on two major reasons: 8 months ago, my ejection fraction had deteriorated and from 45% went down to approximately 34%; also, being 43, I thought that it would have been better for me to try and contain the situation as soon as possible, while I was still in fairly good health.

To undergo the treatment (which is not available in the US) I went to Bangkok where Thai doctors under the supervison of Dr. Patel (in my case), injected my own stem cells in my heart through a minimally invasive heart surgery.

The treatment works as follows: After I arrived in Bangkok, my blood was taken (about 250cc) and flown to a lab in Israel where the stem cells were isolated and cultured. A process that takes about five days. When they returned, they were immediately injected in my heart. I stayed in the hospital for about three days, and then after five days, flew back to the US.

My recovery lasted more or less a month. I had a minor set-back with pericarditis, but now am fully recovered. The experience was overall very positive. I've gotten my first set of prelimininary tests back that show my condition has improved about 3 percent. My ejection fraction is now 37 percent. In a month, I'm up for my 3 month follow up. It takes about 3 to 6 months for the cells to work.

Overall, I feel better. I had some palpitations and some arrythmia which in the past few days seems to be calming down. Also thanks to some very potent herbal tea I had mixed up for me at an Auyrevedic store.

I am also very interested in what Corrig would have to say, and to also trying the supplements she recommends. I am having a difficult time navigating this site, but I hope that one day she will answer me.

If you need to contact me for more information about my experience, my phone number in Los Angeles is: (323) 951-0362

Thanks for contacting me, and I look forward to your response.

Guido

Corrij (therapeut)
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Bericht door Corrij (therapeut) » di mar 07, 2006 12:02 pm

Hi Guido,

First of all, welcome back and of course I will answer your questions :wink:

I have read your story about cell treatment and I think you`re a very brave man to try this kind of treatment :D :D

I have heard and read about it and I think its a big stap forwards in trying to cure CM and I hope more people will follow.

About the supplements your taking,I miss a few very important ones.

The Q10 must be 2 x 100 mg a day
Did you take MSM and Chromium?
Because we always started with MSM and Chromium and in a few weeks we added some more.

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 have to build it up slowly because MSM detoxifies and it can cause headache, diarrhoea or tiredness.
Msm and chromium are not a part of the heart failure protocol but they are meant to give you more energy.

Furthermore I would like to advice you to start with acetyl L-Carnitine 3x 500 mg a day.

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.

Gast

Bericht door Gast » vr mar 24, 2006 7:03 pm

Hi Corrij,

I just wanted to let you know that I am up to speed with all the supplements that you reccomended. The only change was in regard to the Chromium. The only quantity available here was 250mg (instead of 200mg)...so I started taking it the same.

So far so good. I didn't have any side effects. Thank you for your help and keep me posted on what you reccomend next.


All my best,

Guido

Gast

Bericht door Gast » ma apr 10, 2006 9:09 pm

Hi Corrij,
Just wanted to know if I should continue with the same program that I
have been following for the past three weeks, or should I try to
increase everything and start the heart protocol program.
I am having no side effects with the other suggestions you gave me.
Looking forward to hearing from you,

Guido

Corrij (therapeut)
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Bericht door Corrij (therapeut) » ma apr 10, 2006 9:11 pm

Hello Giudo,
It`s time we start with the real heart failure protocol :D
I suggest the following supplements,

Arginie/ornithine 3 capsules a day at night before you go to bed on a empty stomach
Q10 2x 100 mg. per day

Taurine 3x500mg. Per day

L-Carnitine 3x 500 mg. per day

Alpha-lipioc acid 2 x 100 mg a day

Vitamin E 400 IE 1 x a day


The L-Carnitine you already take, the Chroom and the MSM and the Q 10 Also keep taking
I would also like to Advice you Guido to use 3x 1000mg vitamine C, and
also a multivitamine

I just wanted to say that it would be best to take the carnitine and the taurine
separately on a empty stomach.


For instance the carnitine half an hour before breakfast or two hours after breakfast

The taurine half an hour before lunch or diner. or two hours after
This is to get an as big as possible effect.

Giudo,can you put a message on the forum about how things are and how you`re feeling?

If you still have any questions don`t hesitate to ask,

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

Gast

Bericht door Gast » ma apr 10, 2006 9:13 pm

Hi Corrij,
Thank you for all your kindness and suggestions. I will post on the Forum my progresses. In the meantime, I want to tell you that I really appreciate your help and I wish you a Happy Easter to your and your family.

All my best,

Guido Santi

Willy
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Bericht door Willy » di apr 11, 2006 10:36 pm

Guido execellent to see you on the forum!! but.........

you forget to login, now oyu post messages under guest.

this makes it more difficult to find your mesaages in the future

Do you still have your username and password?
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 mei 02, 2006 3:50 pm

Hi Guido,

Can you tell me how things are going?

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

Guido Santi

Re: Update on cardiomyopathy

Bericht door Guido Santi » vr jun 23, 2006 12:05 am

Hi Corrij,

Sorry it took me so long to get back to you, but I was waiting to get my last test results from my cardiologist, which it happened to be today.

Overall, I am doing well, my energy level is good and I keep taking my supplements as you suggested. My ejction fraction though has stayed more or less the same since I have started the supplement and since my stem cells surgery.

In March, my E.F. was about 36, and today (June 22nd) is around 32. I was expecting a little improvement, but it didn't happen. Knowing that E.F. has a 4-5% fluctuation based on different factors, I should say that nothing much as changed since a year ago.

The biggest disappointment has been the stem cell treatment. I was hoping to get a major boost for my heart condition, but I knew going in that the treatment was very experimental and was not a miracle cure.

Anyway, I love taking my supplements and still hope to see some results in the near future since it has been only three months. Let me know if there is anything else that you suggest for my treatment.

Thank you very much for your help. I am very grateful for all the information you have been sharing with me, or better, with all of us!

All my best,

Guido
:o

Corrij (therapeut)
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Bericht door Corrij (therapeut) » vr jun 23, 2006 2:28 pm

Hello Guido,

I'm glad to hear from you, it's been a while. :D
Your message is on the forum so that worked.
As far as the stem cell treatment is concerned that is still in the beginning phase, but at least you tried it so you never have to wonder; what if
I'd tried it, would I feel better?
You've tried it and that is a brave thing to do.
You can't expect your EF to rise after using supplement for only three months. With most people on the forum it takes a year, but for a few exceptions.
Stay positive Guido, and when you have time let me know a bit more often how you are,

I'm confident that your EF will rise, stay positive, do some sports and enjoy life,

Kind Regards,
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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Bericht door Marion » vr jun 30, 2006 2:56 pm

Hi Guido :P ,

First of all I want to say you that for me you are a HERO :lol:

I really admire you courage to do all that trouble trying to heal your heart.

I’m convinced that one way or the other you also will succeed in reaching that purpose!

However thanks to people like you the medical world will learn to find the right solution at last.

I can imagine you feel very disappointed that for now there are no results, but at the other hand there were also no negative reactions and that is also an step forwards isn’t it?

For all of that I think you are a HERO :D

Thank you very much.

Lots of love :P
Groetjes Marion :P

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