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26 year old with Dilated Cardiomyopathy

Geplaatst: ma apr 14, 2014 3:11 am
door Landan
Hello

I am a 26 year old who has been living with dilated cardiomypathy since I was 16. I was diagnosed during a physical and showed no signs or symptoms but my EF was at 25%. Over the years, my EF has gone up and down and has gone from 20 to 40%. It is currently at 25%. The symptoms that I have noticed most include the following: shortness of breath, fatigue, and side effects from the medications I am on which include, dry mouth for most of the day, loss of appetite, and loose stool in the mornings. I have no swelling and am not on any fluid restrictions. I try to limit sodium intake to 2000mg or less. I would like my EF to improve and to manage the condition a little better. I am losing faith in only taking medications and feel like I need more to help me feel better.

EF 25%

BP 110/60

PULSE 60

either idiopathic or caused from a virus

I am currently on Carvedilol (Coreg) 25mg twice a day and Irbesartan (Avapro) 300mg once a day.

I also bought most of the "suggested supplements" from your website and am currently taking:

CoQ10 200mg once a day
MSM 500mg once a day
Chromium 200mg once a day

I just started taking the MSM and Chromium a few days ago and have read that you usually increase the MSM dose by 500 mg every few days depending on how I feel, so I will continue to increase until I reach 3000mg

I would like to know when/if I can start the other supplements like L-Carnitine, L-arginine, Vitamin C, DHEA, Alpha Lipoic Acid, magnesium, and the other suggested supplements. And if you could let me know the correct doses to take, that would be great.


Thank you Willy and I look forward to hearing from you.

Re: 26 year old with Dilated Cardiomyopathy

Geplaatst: ma apr 14, 2014 11:17 am
door Willy
Hello Landan, you have the same profile as many others on my forum. I was also diagnosed with dialted CMP.

Do you have arithmia's? And if YES what kind of arithmia's

Re: 26 year old with Dilated Cardiomyopathy

Geplaatst: di apr 15, 2014 1:33 am
door Landan
I do not have any arrhythmias. I will sometimes get PVCs but do not have anything else. I dont get enough of them to be bothersome though.

Re: 26 year old with Dilated Cardiomyopathy

Geplaatst: di apr 15, 2014 9:35 am
door Willy
Oke which supplements you use at the moment and how much?

Re: 26 year old with Dilated Cardiomyopathy

Geplaatst: wo apr 16, 2014 4:36 am
door Landan
CoQ10 200mg once a day
MSM 1000mg once a day
Chromium 200mg once a day

I have been taking them for 5 days and just increased from 500 to 1000mg MSM as of yesterday. Everything seems to be going ok. I'm not getting any side effects from the MSM

Re: 26 year old with Dilated Cardiomyopathy

Geplaatst: wo apr 16, 2014 10:20 am
door Willy
Increase the chromium to 3 x 200 if you are overweight

Start with 3 x 500 mg acetyl carnitine from a reliable company like now, solgar, health genesis etc

Take the carnitine on an empty stomack one hour before eating

Let me know you choice of carntitne before you buy it. Send product specification via private message, otherwise it will be seen as advertisement in Holland and that is not allowed

Increase the Q10 to 2 x 200 mg per day. Take them when you eat a meal were you also eat some fat

Start looking for good products

D-Ribose powder
Magnesium connected to an amino acid

And send me the product specs via private message

Re: 26 year old with Dilated Cardiomyopathy

Geplaatst: ma apr 28, 2014 7:24 pm
door Willy
How far are you with implementing the protocol Landan?

Re: 26 year old with Dilated Cardiomyopathy

Geplaatst: do mei 01, 2014 5:49 am
door Landan
I'm 6'5" and weigh 180 pounds so I'm not over weight. As of now I'm taking L-carnitine 1000mg 3 times a day. CoQ10 100 mg twice a day. Dribose 10,000 mg a day.( 5000 in the morning and 5000 in the afternoon). And L-arginine at night. I'll have to double check the dose but I believe it's 5000 mg right before bed on an empty stomach. Also, I have been taking 2000 mg of MSM and 200 mg of chromium in the morning. Is there anything else I Can introduce like alpha lipoid acid, DHEA, vitamin c or any other supplements from your website. I bought all the suggested supple td but haven't used the others yet. Thank you!

Re: 26 year old with Dilated Cardiomyopathy

Geplaatst: do mei 01, 2014 1:21 pm
door Willy
So

2 x 100mg Q10
2 x 5 gr ribose --> 3 x 5 gr
3 x 1000 mg l carnitine
1 x 2000mg MSM
1 x 200mcg chromium
1 x 5000mg arginine

Change Plan

Stop MSM when you run out

Stop l-carnitine when you run out and change is for

3 x 500mg acetyl-l-carnitine take it on an empty stomac

Stop arginine when you run out, not enough scientific proof

Introduce 2 x 200mg magnesium citrate or with an other amino acid binding, but NOT magnesium oxide

Re: 26 year old with Dilated Cardiomyopathy

Geplaatst: vr mei 02, 2014 12:47 am
door Landan
That sounds great, I will change my plan as soon as I run out of MSM and L-carnitine. What's the reason to stop MSM? I thought you should take it for more energy especially if you aren't feeling side effects from taking it. I appreciate the help!

Re: 26 year old with Dilated Cardiomyopathy

Geplaatst: vr mei 02, 2014 11:11 am
door Willy
When do you have your next checkup?

What are the current values for pro-BNP (blood test) and EJF % (Pump function)?

And also the following blood values

Vitamin D, CRP and triglycerides

Re: 26 year old with Dilated Cardiomyopathy

Geplaatst: ma mei 05, 2014 5:14 am
door Landan
I just had a checkup in February

I don't believe they have ever told me about my BNP, or they have never brought it up so I would assume it's ok.

My EF was at 25%

My Vitamin D was low and may be due to me living in Minnesota

triglycerides were of normal value and I am not sure about CRP but my CPK levels have always been high (in the 5,000 to 10,000 range) due to a myopathy that I have caused by a form of muscular dystrophy

Re: 26 year old with Dilated Cardiomyopathy

Geplaatst: ma mei 05, 2014 5:53 am
door Landan
the myopathy is called alpha dystroglycanopathy and caused my cardiomyopathy. I recently went to the Mayo Clinic and found this out in mid April.

Im not sure if you knowing that the cardiomyopathy was caused by an alpha dystroglycanopathy will help to better treat my situation but I thought I would let you know.

Re: 26 year old with Dilated Cardiomyopathy

Geplaatst: ma mei 05, 2014 10:44 am
door Willy
Please check if you can get the pro-BNP value from your cardiologist. I want your vitamin D value as well

You can also check if your family docter can help you with these values.

I need them to measure the impact of the treatment

Increased CPK means your hart muscle is damaged

But I need the CRP value, indictation of inflamation, check with your family docter

Re: 26 year old with Dilated Cardiomyopathy

Geplaatst: di mei 06, 2014 7:38 pm
door Landan
My vitamin D is 19 which is on the low end of normal

My BNP is 57 which is normal

Magnesium is 2.2

I don't have a CRP measured. Are CRP and CPK linked? Because I would think that since my CPK is high due to muscle breakdown/inflammation, then the CRP would be high from inflammation.