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lorianndes

Heart Failure

Posted by @lorianndes in Heart & Blood Health, Mar 19, 2012

My husband was recently diagnosed with heart failure (Cardiomyopathy). He's only 46. They implanted a difibrillator and are treating him with medication but he doesn't seem to be getting better. He was just discharged from the hospital last Tuesday and I know it will take awhile for recuperation but it's frightening not knowing if the medication is helping or not. If anyone with any experience to this process could tell me their story I would greatly appreciate it. I'm also thinking about making an appointment at the Mayo Clinic. Any suggestions?

Posted by Anonymous-57616547, Apr 19, 2012

I would strongly urge him to take 400 - 1000 mg daily of CoQ10. The body manufactures this but as we get older we don't get enough for the optimum functioning of the electron chain in the mitochondria of the cells. Cardiologists in Japan and Europe use it for heart failure treatment but not much in this country because they don't know much about it, and they don't know much about it because of lack of research (as you know, most research here is funded by drug companies which of course have zero interest in CoQ10 because it is a natural substance which cannot be patented and therefore wouldn't make much money for them). CoQ is not a cure-all but it absolutely will not interact with your husband's drugs nor will it harm him in any way whatsoever. And if he is on statins, maybe he should reconsider their use; statins are fantastic but also very dangerous drugs which most cardiologists do not understand and therefore prescribe to people where the risk/benefit ratio is not in the patient's favor.Statins can kill.

chuckchev27

Posted by @chuckchev27, May 19, 2012

i also have a defibrillater which i hope never goes off. i take a number of pills for my heart condition and i feel that plavix is the best of he bunch. it is very expensive but by ordering thru Canada ican get it for about $1 per day.

nic

Posted by @nic, Jun 11, 2012

Anonymous,

I am using statins for the last 5 years with out any negative effect, you scared me
by saying that statins can kill, will be thankful if you elaborate on this point. How they are dangerous, please explain in detail.

piglit

Posted by @piglit, Jun 12, 2012

Hi Nic have just read your post and myself am concerned that you have been scared by the posting of Anonymous. Please don't be alarmed if you have been seeing your own cardiologist or specialist I am sure that everything that you are taking is being monitored. I feel that this comment by Anonymous should not have been made as comments like this can cause undue stress to people. If you have any concerns please speak to your dr. Take care Piglit

condoline

Posted by @condoline, Jun 12, 2012

Statins affect every cell in the body because they interrupt the mevalonate pathway thereby lowering not only cholesterol but a lot of other things besides , all of which are essential to healthy body functioning (I won't go into details because this is very technical). Doctors are beginning to catch on. When I told my husband's cardiologist that the risks of statin taking exceed the benefits for seniors, he asked how I knew this; I gave him my most trusted source, statin authority Dr. Beatrice Golomb of the University of California at San Diego, whereupon he immediately went to his computer. He then thanked me and said he had never heard of her. He had already begun to wonder about what "everybody" was saying about statins.

There is also a lively argument over possible dangers of lowering cholesterol as low as the guidelines want it (the committee issuing the latest recommendations consisted of seven drug industry-associated members out of the nine total!). A lot of the negative effects of statins are barely noticeable: for example, occasional muscle cramps or general weakness which we may think only mean we are getting older, temper outbursts, memory problems which we tend to attribute to aging, etc. Use the internet to look up Golomb; she does not talk or write in technical language, but explains in language anybody can understand. Her professional credentials are awesome, by the way!

My 84 year old husband was on Lipitor for many years and didn't think he had any problems, but when I got him off (it takes weeks of tapering off to come off safely), we both realized after a while that the short temper he used to exhibit had completely disappeared and he no longer was having leg cramps - so he was affected negatively by statins without knowing it. I got pulmonary fibrosis in ten months of statin taking and also peripheral neuropathy but I didn't know about the lung disease until a few years ago and didn't know statins were the cause until I obtained my old medical records where "before and after" X-rays told the story (there was no possible cause other than Pravachol). My lung disease can be (rarely) caused by statins. The European Medicines Agency says so. So good luck to you.

purplerod

Posted by @purplerod, Dec 7, 2012

Hi Condoline-What are you doing about the pulmonary fibrosis? I too have been lucky to have it also. I found a wed site http://www.biomedicalabs.com and was wondering if you know any thing about them?

condoline

Posted by @condoline, Dec 8, 2012

There is not one thing that can be done about pulmonary fibrosis. I recall looking into some of the compounds from Biomedical Labs because I know very well how "sniffy" the medical profession gets about alternative medicine. And I remember coming to the conclusion that I want nothing to do with that company's lung products. In fact there is one case of acute respiratory failure from use of serrapeptase. The fact that something is sold over the counter does not mean that it is safe.

I see that CoQ10 is in some of the products. That is made by the body and it is essential for the functioning of the electron chain in the mitochondria of all our cells; any senior citizen and anybody of any age on statins needs to take plenty of it (I'm on 1000 per day in three installments), and also take acetyl L-carnitine, important in fat metabolism. Doctors probably won't mention either one to you because they are sold over the counter, but if you mention them they will nod in approval ( or look up the acetyl L-carnitine and then nod in approval as mine did, in fact saying "keep it up" ). Neither of these helps with the lung disease, but a deficiency can surely cause your health a whole lot of trouble. I wish I had an answer. I only know that statins can cause the disease (see the European Medicines Agency on the subject) but don't quit "cold turkey" because that could kill.

purplerod

Posted by @purplerod, Dec 8, 2012

Thanks for the reply. I just found out that I have PF through lots of test. My oxygen level drops drasticly from 98 to 84 doing any kind of activity I''m only 66 and its hard to accept that its true. The web site was given to me by a friend and thanks for the comments.

sittingscribe1

Posted by @sittingscribe1, Jun 3, 2012

My husband is 75 and has heart failure and kidney disease. He had an ICD put in in March of this year. He is also having a hard time with his meds. (Coreg for strengthening the heart and Midodrine for keeping BP up) Off Coreg for now and keeping Midodrine so BP stays up. (about 107/74 during the day w/Midodrine!) This is so difficult for all concerned. If I could afford the Mayo Clinic, I would TOTALLY make an appointment!! Your husband is only 46. Lots of life to enjoy!

sittingscribe1

Posted by @sittingscribe1, Jun 3, 2012

I wish Anonymous would identify him/herself. We really need all the knowledge and reliable contacts available...

piglit

Posted by @piglit, Jun 3, 2012

hi sitting scribe1. Please always check with your dr before interacting anything. Many things even when natural can interact with other medications.I am on comaudin a blood thinner and have to be careful as many things interact. Many on this site also do prefer to go private or anonymous. Take care piglit

condoline

Posted by @condoline, Jun 5, 2012

And let it be known that "Momentum" is amusing. He needs to know that "pier" is not spelled "peer." There is a difference.

condoline

Posted by @condoline, Jun 5, 2012

I read your plea about using any information you can get. I did not respond right away because I don't like trying to use the tiny keys on my SmartPhone. As to using the internet, by the way: all drugs have side effects (and supplements, ditto) so take that into account, and be careful what internet sites you go to. Go to several and compare them.

condoline

Posted by @condoline, Jun 5, 2012

If I am the "Anonymousj" you are referring to: I have a research background, I know scientific methodology, I have spent two years reading every available, worthwhile study of CoQ10, statins, cholesterol, lipid rafts, the electron chain, the mevalonate pathway and much more in the medical field and I will be spending the rest of my life on the same pursuit because a "fact" in medicine one day may turn out to be no such thing a week later: you can't just read the literature once and figure you are done.

Result of my keeping up-to-date: when I go in with my husband to see his cardiologist the doctor pumps me for info and immediately goes to the references I provide, and ditto for my doctor, who had never heard of acetyl L-carnitine which I am now taking and upon looking it up on the internet said "keep it up" - which I would have done anyway (it helps in the metabolism of fats). And when I see my own medical person at Mayo, we spend quite a bit of time discussing statin research because he has access to research I can't get at and I have read things that he didn't know about until I came in. We take a mutual pleasure in sharing information.

I am not a doctor, but I was studying on the doctoral level in Experimental Psychology at the U of Minnesota until I decided I would rather be doing something more interesting than chasing lab rats the rest of my life. Doctors are much too busy to keep current with research on drugs, so I make suggestions which you might follow up with your doctor (who may need to check them out, if he hasn't heard of this or that which I mention) or on the internet.

And of course nobody should stop statins "cold turkey": it's very dangerous. Talk with your doctor about your concerns and about coming off gradually, and if this bothers him, look up the subject of statins on the internet (Dr. Beatrice Golomb's work is a good place to start: not too technical) and the subject of statin rebound.

If your doctor is unhappy about the idea of quitting a statin, remember: a former FDA director said "People have to take care of their own selves." He knew the problems! I know a number of instances in which following "doctor's orders" resulted in a death which was clearly attributable to something the doctor prescribed. So look up every drug taken, don't let the list of side effects scare you off (the benefits may exceed the risks for any particular person), but if you have a gut feeling against a drug, let your doctor know right away that you want to discuss it with him before proceeding further. Maybe he has a better idea.

lucky5

Posted by @lucky5, Jun 12, 2012

nice to meet u im new in this forum ,, i like the way u put things in perspective im more interested in coq10 and melatonin..any ideas where can i get a more advanced ideas or knowledge on this naturals drugs

fishinglady

Posted by @fishinglady, Aug 5, 2012

I suggest that you make appointment with mayo clinic as soon as possable. I had cardiomyopathy and they wanted to put a pace maker / diffibrillator. they may be able to do sugrey for him. I was 41 years old when I had my sugrey and I don't need a pace maker/ difibrillator. here is the number to make a appoint. 1-507-538-1434. Its been over a year now I look alot better and my color is there. The medican only helps if it is not to bad. HOpe you will make one. They will explaine everthing to you when you and which one you have. They are very good and will help in everyway they can. HOpe you will do it soon sounds like he is not doing so well. The poeople there are very nice to.

fishinglady

Posted by @fishinglady, Aug 5, 2012

I went to minnasota . they have a realy good doctors up there. I didn't need any pace maker-/ difibrillator eather after they did my sugrey. It depends on which one you have. I had a blug behind my valve and they shaved it out and I am doing very well . I had the same thing for 4 years before I did sugrey. I went to mayo's because they have a 98 percent chance that you don't need a difibrillator at all.

raderdude

Posted by @raderdude, Oct 15, 2012

I had a heart attack in Jan of this year. At the time I had a artery blocked 95% and another totaly blocked but with a self made bypass. They put a defibrillator in and 2 stents at that time. It is a slow process dealing with all the changes. My problem is that my arterys get clogged easy. In July while on the treadmill my defib. shocked me twice. heart rate shot over 220 and it turned out I had a third artery that went from 25% blocked in Jan to 95% blocked in July. and I was on the medication. Some people are slow to recover and others quicker. I am wondering why this happened to me even after the meds.
I am now 48,so I can understand your husbands thoughts are probably,why me,Im too young.
How is he doing since your post in march ?
Scott

fishinglady

Posted by @fishinglady, Oct 28, 2012

I would make an appt. with mayo clinic thats were i went to minniasota for my heart sugray. I did not need a difibrillator or pacemaker at all. I would go.

fishinglady

Posted by @fishinglady, Dec 31, 2012

Hope you made an appt. to see which one you have. I had the one that was reparable.

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