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Current Afib recommendations

Posted by LSulka 
Current Afib recommendations
February 09, 2018 11:44AM
Hi Everybody, rarely have time to visit much any more, but do want you to know that you continue to do a great service to all visiting Afibbers looking for solid research on the subject. Recently, I was diagnosed with "Diastolic Dysfunction" in the Left Ventricle and this was one of the first places I came to do my research. Found an article of summarized info in DD by Shannon (I believe) and found it extremely helpful.

Being gluten free has been highly beneficial in helping me stay Afib free. Which has caused to wonder what other dietary recommendations are you making. There is so much confusion among the experts including too much oil - even health oil is harmful, and also lectins and their harm to the gut. Are you still recommending the Paleo diet, or modified Paleo diet? I learn toward Mark Hyman's Pegan diet primarily.

Would love to hear from you regarding what's working and what's not - and in particular you, Jackie, who I have always found so knowledgeable and helpful.

Good health to you all!
Re: Current Afib recommendations
February 10, 2018 09:51AM
Hello Lois - Good to hear from you again, but sorry about the DD development. I think you're smart to be evaluating the current dietary trends. Check some of the recent, past posts by George N and his dietary discipline.

Current opinions indicate that organic, expeller-pressed, virgin coconut oil is good to use now that the focus is more on using fat for fuel. It's certainly easy, satisfying and tastes good. So the focus is on protein, healthy fat and low-sugar low-carb veggies and a modest amount of fruit.

Send me a PM and let's catch up.

Be well,
Jackie
Re: Current Afib recommendations
February 11, 2018 09:14AM
Lois - Here's a link to a previous post on the importance of CoQ10 related to diastolic dysfunction Check out the many links for supportive info. [www.afibbers.org]

Also, this one links to a report published in Townsend Letter which is a great overview.
[www.afibbers.org]

Jackie



Edited 1 time(s). Last edit at 02/11/2018 09:17AM by Jackie.
Re: Current Afib recommendations
February 11, 2018 10:17AM
thanks Jackie. Here's a little history on my case and an update on what I am currently doing. I have done really well for more than ten years following my Classic Maze surgery in 2006 by Pat McCarthy from Cleveland Clinic who relocated to Chicago to set up a premiere' cardiac center in Chicago.

Through the years, I learned through my local functional medicine cardiologist and from specifically your case on afibbers.net the impact of food allergies including gluten intolerance and dairy and how they affect Afib. And, through the years, I have a few trips to ER about 2 hours after accidentally ingesting gluten. I use pill in pocket but when I have taken a full dose and it can't stop it, I go in for help. I also learned how this all affects the thyroid and can demonstrate it in my past blood work - the auto-immune state and how it interacts with the thyroid and sets off the heart.

So, for more than a year things have been going very well. As indicated, regular exercise and moving forward with my health. Then in Nov. 2017, I was at a brown bag luncheon and took a bottle of Kombucha and was sipping it when I suddenly felt something odd in my chest, like a lot of pressure. I immediately thought "gluten" but as I scanned the ingredients I realized I has just ingested 40+mgs. of caffeine from coffee bean ingredients, something that is not normally present in Kombucha. They usually use green tea and had not had any problems up to this point.

For the next 2 weeks, I couldn't see any pulse or blood pressure indicators telling me I had a problem. But on a Sunday morning I felt very SOB, so I went into to local ER and it was determined I was in congestive heart failure with a BNP of over 3200 - less than 100 is normal. I was educated on CHF and kept overnite and sent home with Rx's. I truly felt I was being sent home to die since no one offered a recovery prognosis.

A week later I had an ECHO that showed the heart was "normal" but DD in the LV - was moderate.

So I did what I do -began to learn everything I can about the subject. Remember, my cardiologist (who is now retired) has recommended a book to read by Stephen Sinatra, MD; I found it and re-read it and ordered his most current book.
So, right now I am doing pretty much every he recommends, just not using his supplements

I also visited the afibbers.net website and researched "diastolic dysfunction" and was so pleased to turn up Shannon's post and your comments and dialogue on DD.

Today, I continue to supplement daily per Sinatra; take beta blocker and fluid retention drug, BP drug - most of which is very low dose, I believe and haven't had any side effects yet. Exercise moderately daily and try to limit salt intake; however, I have noticed when I do occasionally take in more sodium, my heart doesn't seem to be working as hard as it did when I was first diagnosed. My new cardiologist staff indicated that they have see cases like mine reversed; and a quick check with Northwestern nurse who knows my case indicated a good prognosis that I could expect this not to shorten my lifespan, especially if I am careful with sodium, and you, Jackie, and I know especially if I re-supplement the body with the nutrition that washes out with the Lasix.

So here we are on the snowy Sunday. Looking forward to hearing from you. Hope your journey has continued to be a good one.

Lois
Re: Current Afib recommendations
February 11, 2018 12:20PM
Hello again, Lois. Thanks for going into your history and the recent details which are certainly of significant concern but I'm so relieved to read that you are improving and the encouraging comments from the nurse. Glad you are well-versed with the background and please do focus on the research by Dr. Langsjoen in that reference list.

Just to clarify, while I did test positive for a gluten sensitivity many years ago and did go GF as a result, I didn't have any severe reactive responses. Without the test, I'd not have known. I also tested positive for leaky gut syndrome (LGS) so most likely, the two issues contributed to various reactive responses behind the scenes. The LGS was resolved many years ago. My first afib event was May 1995 and my first ablation Natale ablation in 2003 (Cleveland, OH) lasted for 11 years. Then, I began to have breakthroughs which were mostly A-flutter and those were extended duration and high heart rates so resulted in many Electrocardioversions and a total life disruption so I quickly I had the second Natale ablation (this time in Austin TX), in August 2014 followed by a touchup in April 2015 (Austin) and have been stable since then... thankfully!!!

I’m hoping for you that with time and enough of the supportive benefits of the CoQ10 and your other protocols, your DD will be classified as very minor or resolved. And... Yes… become a diligent label reader if you consume anything you didn’t make from scratch.

Jackie
Re: Current Afib recommendations
February 11, 2018 12:40PM
Good to hear your update. Have wondered through the years how you were doing. It's not what the professionals tell me, it's what they avoid telling me that most concern me. When I went to Northwestern in 2006 I was in cardiomyopathy with an ejection fraction of .18. Four days later following the Maze surgery my EF was 50+. Dr. McCarthy follows my case annually through a questionnaire, as he does all his former patients. I was pleased that he was pleased enough with my progress to have his nurse assistant give a personal call of congratulation. That fact, keeps me working hard, but not too hard.

Jackie, from what you said, DD does sound reversible. I can't wait until May for a re-check and I plan to have the BNP blood work done again to see my progress. I must say, I was in shock with the the news of a entirely new health issue, CHF, I am pleased that I am still competent to educate myself and evaluate information on a new dx. By the way, my internist said he has seen the BNP numbers reverse. That is huge. Just so glad there was no injury to the heart.

L
Re: Current Afib recommendations
March 01, 2018 11:24PM
Hello Lois - I have to chime here, as I believe it was my diagnosis of diastolic dysfunction that resulted in Shannon's post on here, and perhaps some of my story will be helpful to you as well.

Last year I was diagnosed with DD after an ultrasound done at my annual checkup at the Cardiologist. I had been complaining of shortness of breath for over a year. I still wonder if there was any connection with the walking pneumonia I had a couple of months before that problem began, or maybe even the antibiotic I was given for the pneumonia....hard to know. Anyway, I received a phone call soon after I left her office indicating that I had Stage 3 diastolic dysfunction. I researched it and then felt like my life was going to be a lot shorter than I had planned...it was a miserable weekend.

I called Shannon to get his opinion and see if he had any words of encouragement, which he usually does...plus he's so knowledgeable about anything cardio related. He asked for my test results and forwarded them on to Dr.Natale. It was determined that the stage of my DD was probably not as bad as it appeared, as he wrote here: .... "it is also possible, if not likely, for the degree of any Diastolic Dysfunction to be over-estimated in your case simply due to your prior extended LA/LAA ablation work, which often can reduce the Doppler A-wave reading into the mitral valve inflow by an entirely different mechanism than that which is looked for when assessing this very same A-wave into mitral inflow reading while attempting to grade the degree of Diastolic Dysfunction.

In other words, I may very well have DD, but probably not as advanced as my Cardiologist thought. I also found out about Dr. Sinatra, ordered his book, "Integrative Cardiology" and am following his protocol for supplements too. I am wondering now if we should be taking a higher dose of CoQ-10 based on some of the links which Jackie provided in her post above....I am averaging 300 mgs./day of Ubiquinol, but the other recommendation stated an average of 580 mgs/ day of Ubiquinone.....Hmmm?? I'm also wondering if we have to take this forever or if we can ever stop it...as it does get kind of expensive. I take the D-Ribose and the Acetyl l-Carnitine too.

In addition, I read that several studies say that regular aerobic exercise can greatly improve the situation and may even reverse it. I do walk very briskly three days/week and am trying to fit it in every day. I am counting on the exercise and protocol given by Dr. Sinatra to keep me healthy and able to have many good years still to go!

So as you can see, Lois, it seems we are on a similiar path. I'm grateful to have hope from Dr. Sinatra and the info on exercising, as I'm sure you are too. I do hope there is a chance that we can both reverse this condition, as that would sure bring a sense of relief.

And thank you, Jackie for including all of that great info on this condition. Very helpful.

If either of you can answer that question about whether I need to increase the CoQ10 dosage, I would appreciate it. Otherwise, more research to do.

Have a good night ~ Barb
Re: Current Afib recommendations
March 02, 2018 12:18AM
Hi Barb, I am sorry I didn't see you post sooner. Very helpful. Jackie and I went "off forum" so we could work one to one on reviewing what I have been doing. Dr. Natale's comments are very interesting. I may have indicated that my BNP was over 3200 which is really high. I hope I will be retested in May when I see the cardiologist again. I did follow through with the beta blockers, etc. and am doing fine.

Regarding your question of CoQ10 - I use a Life Extension product that is the patented product that Japan first formulated. And I ALWAYS take the CoQ10 with a few other supplements as recommended by Sinatra. I take 100 mgs. twice a day - away from the Rx's. I would think if your BNP is normal you wouldn't need 300 mgs. a day.

Are you on statin drugs? You may or may not know that statins deplete CoQ10 and Vitamin K2 (MK-7) so you would definitely have to take more of these if you are on statin drugs or red year rice.

Thanks for sharing your DD history. Sounds like you are doing just fine. I am very pleased with my progress to date since walking opportunities are less in Michigan with the winters. But I will be dramatically increasing my exercise once we have more 50-60 degree weather.

Lois
Re: Current Afib recommendations
March 02, 2018 08:10PM
Thanks for your response, Lois. Couple of questions on what you wrote. Do you take the Ubiquione or the Ubiquinol? I am confused as to how they differ. I am also not sure what BNP is...?

I'm not on statin drugs but I do take vitamin K2 along with D3, which is the recommended way to take it, as they work well synergistically. I happen to be an Account Rep for a wellness manufacturer, and have learned quite a bit about all of this over the years. I think everyone over 50 should be taking K2 to reduce calcification of the arteries...We certainly don't need any more heart issues!

I think I am a little better than when I was first diagnosed with DD, although sometimes it's hard to tell if it's the same or better. Definitely not worse. I was pretty upset when I went to see my cardiologist in December, as a nurse practitioner first met with me and made me feel like I was doomed to heart failure and failing health. He started talking about watching for my ankles for swelling, becoming more fatigued, more shortness of breath, etc. as I got more and more upset hearing him talk. I challenged my Cardiologist about this when she had made it sound like this was manageable. I also told her that I had read a study that said that aerobic exercise could reverse DD, and she said that it could. If that's the case, I have to wonder....WHY aren't they shouting that from the rooftops?!

Needless to say, I am following what Dr. Sinatra recommends, and trying to get in as much exercise as possible, while trying to stay off the internet...

It's good to have a "fellow" Afibber who gets it and can empathize.

Have a good night ~ Barb
Re: Current Afib recommendations
March 02, 2018 08:48PM
Hi Barb, love this new format where any thread you have commented on comes via e-mail for a response. Thank you Shannon. Great job!

Regarding the CoQ10. I did a ton of research of the two forms and as Dr. Sinatra indicated in his testing there was fractions of difference between the two - which came down to absorption. Sooo, my husband has taken the Metagenics CoQ 10 which is ubiqinone for years recommended by a holistic cardiologist.

On the other hand, after tons of research take Life Extension Super Ubiquinol CoQ10 with Enhanced Mitochondrial support. It is the patented Kaneka Ubiguinol which score high in everybody's book, I do believe and less expensive than the Metagenics product. Difficult to tell which is better, but I follow all SInatra's recommendations of what to take with CoQ10 to increase absorption including certain minerals, healthy oil, and we also take with a product called Willard Water that you can check out. Have used it for years. They have a website - it's a special water made by adding drops of WW and when you drink it enhances digestion and absorption of nutrients. Learned about when I discovered an expert of feeding dogs a natural diet, the Volhard Natural Diet, which I have prepared for our pets for 2.5 generations.

Regarding the BNP or PBND, it is a blood test that is administered upon entering ER for heart issues. They can tell if you have had a heart attack or not and I think damage to the heart. However, since I was told by my internist that he has seen the BNP go down, I take it to mean that people can recover no matter how high the numbers, but we never discussed the probability of it. So I thought I was being send home to die until I thoroughly read two books of Dr. Sinatra's books and set up my own treatment plan to follow.

I hope Jackie and others will jump in here if there's anything I have said that needs to be corrected. We can both learn more.

Nice to share with you, Barb.

Lois
Re: Current Afib recommendations
March 07, 2018 11:23PM
Thanks for all of that information, Lois - that was helpful.. Between Dr. Sinatra's recommendations, an excellent vitamin regimen I've been on for about 10 years, my efforts to do more aerobic exercise and drinking PH balanced water, I am hoping to do better than a lot of people who end up in full heart failure, which progressed from diastolic dysfunction. That scares me to death....even the words...I know being sedentary is not good for many reasons, but certainly for this condition, according to what I've read.

I do wish we could contact Dr. Sinatra directly, as I have some questions I'd like to ask. Even better, I would love to have him as my Cardiologist, but I understand that he is retired. Do you know if he has some kind of website or way to contact him?

Regarding the various companies selling CoQ10, I would expect that the Metagenics is more expensive, as that is a multi-level marketing company, and they always are over priced.

I'll have to look into the Volhard Natural Diet, as we have two dogs and two cats...never heard of it.

Until the next time ~ Barb
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