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Heart Failure - Road to Recovery

yeah, i still feel a bit sluggish due to the low BP (96/68 today) but all in all i feel better without the entresto.
Or it is in my mind.
I try to stay at my upped dosage of 3,75mg nebivolol and if this does not bring me problems, i try to increase next weekend.
M

I have been a member for quite some time. My Heart failure was similar in nature to yours. It came on fast, I was 15% EF. Stayed that way for 9 months. Onset coincided with addition of GH to regime. High dosage ubiquinol was added at 9 months. On very next Echo, improvement to around 35-30. Currently around 45 to 50 depending on the test. I use Curcumin regularly but that was after EF recovery. I will add the others mentioned by Dante. I wish you success. I think I am 12 years or so from my hospitalization. You may search my threads for information on my situation if you wish. Good Luck to you my friend.
 
Do you know for sure if the problem is due to that heart condition that makes the heart walls spongy? Maybe it's something else that is less permanent?
 
M

I have been a member for quite some time. My Heart failure was similar in nature to yours. It came on fast, I was 15% EF. Stayed that way for 9 months. Onset coincided with addition of GH to regime. High dosage ubiquinol was added at 9 months. On very next Echo, improvement to around 35-30. Currently around 45 to 50 depending on the test. I use Curcumin regularly but that was after EF recovery. I will add the others mentioned by Dante. I wish you success. I think I am 12 years or so from my hospitalization. You may search my threads for information on my situation if you wish. Good Luck to you my friend.
what dose is considered high, want to make sure im taking enough, all these folks lately w heart problems have me extremely paranoid
 
I personally take 400 mg/day now, after my heart attack.
 
Do you know for sure if the problem is due to that heart condition that makes the heart walls spongy? Maybe it's something else that is less permanent?
Hey Maldorf,
to be honest i know next to nothing. I know my EF is very low (once measured 16, once measured 23 according to letters), the sctructure is "spongious" on some parts, my mitral valve is highly insufficience and so on. Ill try to post the whole list this morning
The "spongious" structure could mean that its a non compaction cardiomyopathy, but there can be other causes like myocarditis etc.
Thats why the myocardbiopsys was done. But still today (2weeks after the surgery) me and my cardiologist have no results.
I feel left alone by the docs to be honest.
The appointment at my family doc regarding the new onset of water in lungs was like this:
- "doc, i was water in lungs since saturday. The only thing ive changed since then is ive added a second dose of nebivolol and a higher dose of entresto in the evening. On saturday morning, i think i overexerted myself by doing a too long walk when the sun came out and it got too hot" (i thought i can walk to the pharmacy instead of taking my car which is 4500 meteres away).. "Also, my blood pressure is very low.
- he measured .. "100/70", this is indeed low measured in the doc office. It probably even drops lower in the evening. Dont take your medication tonight and reevaluate".

Ive asked him if i should increase the torasemid, if it is possible to change to another diuretic because i dont feel any different in haveing to piss on it etc. etc.
Doc just says "i can not decide that, ask the cardiologist"

and my cardiologist tells me we can not make another ppointment as long as the results are not there yet.

@Pekkerwood: thanks for your input. Ive already read your thread. And now that you mentioned it, one thing i took less of since around last friday is ubiquinol since my package from UK seems to sit in customs and i lowered the dosage from 300mg to 100mg kaneka to not run out.

and thanks guys that you are here for me.. I pay the fucking docs a shitload of money and they dont care and here i get help and support for free.. thats why i love the community
 
Hey Maldorf,
to be honest i know next to nothing. I know my EF is very low (once measured 16, once measured 23 according to letters), the sctructure is "spongious" on some parts, my mitral valve is highly insufficience and so on. Ill try to post the whole list this morning
The "spongious" structure could mean that its a non compaction cardiomyopathy, but there can be other causes like myocarditis etc.
Thats why the myocardbiopsys was done. But still today (2weeks after the surgery) me and my cardiologist have no results.
I feel left alone by the docs to be honest.
The appointment at my family doc regarding the new onset of water in lungs was like this:
- "doc, i was water in lungs since saturday. The only thing ive changed since then is ive added a second dose of nebivolol and a higher dose of entresto in the evening. On saturday morning, i think i overexerted myself by doing a too long walk when the sun came out and it got too hot" (i thought i can walk to the pharmacy instead of taking my car which is 4500 meteres away).. "Also, my blood pressure is very low.
- he measured .. "100/70", this is indeed low measured in the doc office. It probably even drops lower in the evening. Dont take your medication tonight and reevaluate".

Ive asked him if i should increase the torasemid, if it is possible to change to another diuretic because i dont feel any different in haveing to piss on it etc. etc.
Doc just says "i can not decide that, ask the cardiologist"

and my cardiologist tells me we can not make another ppointment as long as the results are not there yet.

@Pekkerwood: thanks for your input. Ive already read your thread. And now that you mentioned it, one thing i took less of since around last friday is ubiquinol since my package from UK seems to sit in customs and i lowered the dosage from 300mg to 100mg kaneka to not run out.

and thanks guys that you are here for me.. I pay the fucking docs a shitload of money and they dont care and here i get help and support for free.. thats why i love the community
Sounds like you need those biopsy results now! Thats bullshit that it has been 2 weeks and no results. Here in my hospital it would have been 4 or 5 days max to get my results. Thats crazy.

Having mitral valve problems can greatly lower ejection fraction. Im kinda hoping that a lot of your problem is due to that because that can be fixed with a new valve. What happens is if the valve doesnt close all of the way then blood ends up going backwards back from the left ventricle and up into the left atrium when the ventricle contracts. Because of that, some of the blood that should have been pumped out to your body ends up going back into the atrium and thats what reduces the ejection fraction. Stroke volume out of the left ventricle into the body is reduced.

If you have permanent damage to your muscle like me then you are in my shoes, just trying to hold onto what you have now. Ive been holding on now for 13 years and its been a slow steady progress downward, heart slowly getting worse.

Not to get ahead too much, but if it is indeed a lot to do with the valve, then you can get a pig valve or an artificial valve. Artificial is what they would recommend to you since you are young because the biologic valve, pig, only lasts about 10 to 15 years. i think that might be the surgery that Arnold Swarzenegger had quite a few years ago. It is rather routine these days and highly successful. I think if you get the artificial you need to go on an anticoagulant like I am on. Coumadin is what ive been on for the past 12 years.


Has the cardiologist talked to you at all about replacing the valve? Id think he would have if it were a big problem.
 
Get the results of the test yet? Wondering how you are doing.
 
Anyone using gear or not should be using a good dose of curcumin. Obviously the others Dante recommends, as well. It baffles me how so many people refuse to listen to his advice. It might save your day.

What is it you feel curcumin will do to so dramatically help those on gear?
 
What is it you feel curcumin will do to so dramatically help those on gear?

It’s help left ventricular heart size if I have the correct. @dante if I’m wrong. Apigenin also keeps the heart from growing. Now does that mean you can take a shit load of shit all the time….highly doubt it but there’s some healthy bb who actually care about their health that utilize Curcumin. I don’t know if you are familiar with Chase Irons? He has a lot of heart scans and organ imaging done. Also blood work.
 
Dante is one of the great guys on here. He actually cares and offers so much knowledge for free.
 
It’s help left ventricular heart size if I have the correct. @dante if I’m wrong. Apigenin also keeps the heart from growing. Now does that mean you can take a shit load of shit all the time….highly doubt it but there’s some healthy bb who actually care about their health that utilize Curcumin. I don’t know if you are familiar with Chase Irons? He has a lot of heart scans and organ imaging done. Also blood work.

I'd love to see some studies backing up those claims about curcumin and apigenin. Both have great potential health benefits, but I've never seen research to back up those specific points
 
I'd love to see some studies backing up those claims about curcumin and apigenin. Both have great potential health benefits, but I've never seen research to back up those specific points



etc

as far as curcumin put in

curcumin cardiac hypertrophy

curcumin cardiomyopathy

curcumin heart enlargement

in google and read
 
What is it you feel curcumin will do to so dramatically help those on gear?


There was a person in this very forum who did curcumin morning and night for a good 12-18 months and had a reduction of his severe LVH by about 25% if i remember correctly
 

Been helping this guy for about a month....

There has been dozens of these guys


and

Superheavyweight Bodybuilder one of the best ever in the USA: (diagnosed with severe heart enlargement) EF was 28...made it all the way back to 63EF : "Thanks a million man! I was really pleased to see these numbers too, but I don't know them like you do so I wasn't sure how I compared to other guys that had issues like I did. I appreciate all your help very much, thank you!"



I dont sell this stuff so......
 
Thanks Dante, I will look into it. The only one I'm not sold on is the pycnogenol. I've seen the study but it was combined with CoQ10 and there are numerous studies showing the benefits of CoQ10/ubiquinol alone. It would be good for someone to show pycnogenol doing anything on it's on, or comparing pyc+CoQ10 vs CoQ10 to see if there is even any additional benefit to it.

I do take curcumin and ubiquinol at fairly high doses, 1.2g Life Extension brand and 300mg Jarrow's brand respectively. I've read that Apigenin is found in sufficient quantities in fruits and vegetables but it admittedly is not one I've studied much.

Shame we can't get larger trials on these supplements. Often times when they are taken to large randomized controlled trials they are found to not be as helpful as expected, but alas that is the nature of supplements.
 
Get the results of the test yet? Wondering how you are doing.
hey maldorf,
unfortunately not, i am still waiting. The response is always the same, biopsy takes time, much do to right now, blabla.
I was promised to get "something" latest beginning of next week.
The good news is that we made it possible (well, my doc) that i can have the vest another 8 weeks. This means in total i will have it 17 weeks, usually is it 12 weeks.
This gives me and my heart more time to regenerate.
As already said, i switched medication since i couldnt tolerate entresto.
right now i am on
5x 5mg torasemid (3x morning, 2x midday)
16mg candesartan morning, 8mg evening
6,25mg nebivolol morning (in creasing this one since i really feel it doing good)
25mg eplerenone morning

additionally:
800mg-1000mg ubiquinol (yes, you read right, ive received my big expensive pack and i take 800-1000mg kaneka daily) --> i feel this helps immensly
10g d-ribose daily split in 2 servings
3g taurine daily split in 2 servings
500mg apigenin
1600mg meriva curcumin
5g krill oil 8g fish oil split in 2 servings
40mg PQQ
12mg axanthine
2x 1g vit c
2x 800mg mag l-thereonate (or whatever its called)
+ the basic multi vit, zinc, ..

since saturday, ive added a low dose tb500 and bpc157 to the mix since ive read good stuff about them being used in CHF patients.
 
Hey man, good to hear you are feeling better. How about a higher dose of Taurine? Ive read studies stating dosages of 10-15g daily of Taurine improved the hearts function within heart failure patients.
Taurine is also extremely cheap here in Germany / Western Europe so if you havent tried that yet it might be worth a shot, seems like a good supplement.

The other stuff youre taking sounds great too.
 
Hey man, good to hear you are feeling better. How about a higher dose of Taurine? Ive read studies stating dosages of 10-15g daily of Taurine improved the hearts function within heart failure patients.
Taurine is also extremely cheap here in Germany / Western Europe so if you havent tried that yet it might be worth a shot, seems like a good supplement.

The other stuff youre taking sounds great too.
taurine is no problem price-wise, thats correct. i think i pay 15€ per kg in bulkpowders sale (i am also from germany :D)
I have not heard about those high dosages, do you have a link for me? would be interested in reading it :)
are there any known adverse effects with this high dosage?
 
Thanks Dante, I will look into it. The only one I'm not sold on is the pycnogenol. I've seen the study but it was combined with CoQ10 and there are numerous studies showing the benefits of CoQ10/ubiquinol alone. It would be good for someone to show pycnogenol doing anything on it's on, or comparing pyc+CoQ10 vs CoQ10 to see if there is even any additional benefit to it.

I do take curcumin and ubiquinol at fairly high doses, 1.2g Life Extension brand and 300mg Jarrow's brand respectively. I've read that Apigenin is found in sufficient quantities in fruits and vegetables but it admittedly is not one I've studied much.

Shame we can't get larger trials on these supplements. Often times when they are taken to large randomized controlled trials they are found to not be as helpful as expected, but alas that is the nature of supplements.


I agree, we need more studies. The issue is these studies are expensive and big pharma doesn’t want us cutting into their money.
 
taurine is no problem price-wise, thats correct. i think i pay 15€ per kg in bulkpowders sale (i am also from germany :D)
I have not heard about those high dosages, do you have a link for me? would be interested in reading it :)
are there any known adverse effects with this high dosage?
This is probably the most recent summary of the most taurine studies done: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2586397/#!po=2.05479

Sadly this is not the one I meant with up to 15g taurine a day but as soon as I find it I'll get back to share it. Anyway as you can see in the table 1 picture theres still some benefit to it if taking more than 3g. As far as I know there is no known adverse effect or any side effect.
 

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