Stem Cell Cures for AFIB

"I am hearing this happening more and more. Stem cells are curing AF, and Congestive Heart failure. So i thought i would pass it along. AFAIK, umbilical cord stem cells are not allowed in the US, so i am looking into which countries allow this. Here is what a close friend just told me:"

"My husband had great results with umbilical cord stem cells. He was in a-fib for 9 months then was in a-flutter after ablation surgery. They wanted to do more ablations. Our functional med dr talked him into waiting on the stem cells. 6 months post stems: normal sinus rhythm and Ejection Fraction increased from 25 to 45%."

Bill Syrjala bills01581@yahoo.com [AFIBsupport] <[email protected]>

Also found this:

[academic.oup.com]



Edited 1 time(s). Last edit at 05/27/2018 10:46AM by jpeters.

Well if this does work on a broad scale even at lets say a 50% rate it would be incred. news....biggest since ablations themselves became popularized.

Another referece:

[a-fib.com]

It's important to keep the research in perspective. Repairing heart tissue damaged by ischemia may or may not translate to treating afib. After all, the exact cause of ischemic heart disease is known, but the exact cause of afib is not. Ryan is speculating rather wildly when he predicts that stem cell injections will become standard treatment for afib.

That said, I do believe the ultimate cure for afib will be via some type of gene therapy, be it stem cells or something else, but I think getting excited about this research is premature.

I agree Carey, it is much too early to pronounce consistent and robust stem cell-based ‘cures’ for major cardiac repair and certainly too early for promoting AFIB ‘cure’s using regenerative medicine, as promising as eventual progress in this new field will no doubt be, and will surely realize in the still somewhat distant future.

And I am about to get MSC (umbilical cord derived) stem cell therapy, plus Amniotic fluid and PRP (platelet rich plasma) on my now very dysfunctional neuropathic thumbs/hands ‘stemming’ (no pun intended) from my late impact of polio I have had for many years after contracting the disease at 10yrs old from the Sabin oral polio vaccine. I’ve found the very modest risks versus potential very good benefits from these far better-vetted current uses of combined stem cells plus added growth factor therapies to make it well worth pursuing in light of the very minimal benefit I’ve gained from pure allopathic regimes and purely nutritional/herbal protocols and endless body work, acupuncture and a host of other alternative options that have failed to make much of a dent in my condition.

Stem cell therapy very likely will have a major impact on many health conditions and assist in systemic repair in the years and decades ahead. And the better-vetted areas to-date for getting decent results with current stem cell procedure are mostly limited to orthopedic, rheumatology and neurological treatment spheres, as well as with some later-stage lymphoma and leukemia treatment where occasional life-saving/prolonging results can occur.

However, as promising as this new approach to Medicine truly looks in the long run, it will be a good long while before we are rebuilding hearts and ‘curing’ AFIB via Stem Cell therapy. We just have a good deal longer to go for more fundamental organ repair therapies to mature that are at all consistent and replicable.

A lot of good early work is being done to be sure, but the honest docs I see in this field of regenerative medicine are mostly sticking to ligament, tendon, muscle, cartilege and spinal disc procedures. And also, including peripheral neuropathy, and to some degree RA and osteo-arthritis therapies with a combination of these concentrated and highly targeted biological cells and growth/repair factors our bodies recruit for that purpose naturally as a function of our endogenous healing mechanism.

The best results still often take a few repeated procedures using combined elements like either autologous bone marrow aspirate MSC stem cells, autologous fat or Lypo-aspirate MSC stem cells plus Amniotic fluid and often PRP to all act as a kind of scaffolding for these added growth factors and for the live stem cells to build on.

Recent advances in processing umbilical cord blood-based MSC stem cells that essentially eliminate, or greatly minimize, any minor risk of DNA donor-to-host cross-contamination issues, have resulted in a big surge in umbilical cord-based products that also often include Amniotic fluid and PRP to form what is known as a ‘super biologic formula’ for best results with typical orthopedic and neuropathic issues ... as well as some forms of chronic pain therapy.

Be aware and skeptical, though, of hyperbolic claims of miracle cures for everything under the sun as some snake oil purveyors are active in any such new cutting-edge field like this, in addition to the serious, responsible and reliable research scientists and clinicians who are focused on pioneering our way forward. Often the ‘fly-by-nighter’ types you will find are hyping the level of our knowledge and consistency of results acheived well beyond what is realistic in the real world at this still early, but promising, stage of this exciting field which is sure to have a major impact on medicine in the years and decades ahead.

I certainly do not condone spreading rumors of reliable stem cell-based AFIB “cures” based on a handful of anecdotal reports so far and we will not be hosting such claims on the main Afibbers Forum here until we have very well-vetted and peer-reviewed evidence that the field has evolved to that point.

We all live in the present, like it or not, and one key to happiness I have found is being at ease with reality as we find it and with accepting living at ease and at peace with the unknown. Projecting well ahead of what is reliably and safely achievable in the here and now is a fools bargain in my book.

Though it is certainly understandable to get excited by such stories, but I strongly caution to temper such enthusiasm early on by demanding reliable, replicable evidence before investing too much of ourselves and our hopes in any such venture, when such solid evidence is just not in the here and now as yet.

That’s how people can hoodwink themselves, inadvertently, into endless procrastination while their underlying condition continues to progress toward persistence and deeper structural remodeling while they pine away in fantasy-land imagining the real cure is just around the corner, and thus avoiding some highly effective techniques for locking the AFIB genie back in the bottle long term that are really available to Afibbers wise enough to follow our time honored process of combining both life style/Self-health protocols we strongly endorse here with a highly demanding discrimination about just who one chooses to guide their expert ablation process if, and when, it’s becomes clear that adding such an ablation process is the best option going forward so long as one choses wisely and does not compromise that choice based mostly on convenience.
.
I’ll move this tread in a few days or so to the General Health forum where it more properly belongs for any of us that want to explore the progress stem cell therapy is making in various areas of Medicine over time. And as the time comes when real progress toward such a stem cell-based ‘ablation’ solution of AFIB looks more promising ... and current ... we will, of course, post such a thread on the main Afibbers Forum when it is true ready for primetime and thus won’t be so apt to continue dangling the carrot in front of the donkeys nose, however well-meaning, as the donkey wanders all over the mountain trail imagining he can almost taste that carrot dangling seemingly just inches from his nose when, in fact, a reliable “stem cell cure” for AFIB may be closer to a mirage at our present level of understanding and application of such cutting-edge therapies.

Cheers!
Shannon



Edited 2 time(s). Last edit at 05/28/2018 08:27PM by Shannon.

Let's not get paranoid about reporting research into techniques other then ablation.. Nobody believes that Stem Cell research is currently "ready", but having to remove any mention of it is simply ridiculous. Who are you trying to protect?



Edited 1 time(s). Last edit at 05/28/2018 09:44AM by jpeters.

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jpeters
Let's not get paranoid about reporting research into techniques other then ablation.. Nobody believes that Stem Cell research is currently "ready", but having to remove any mention of it is simply ridiculous. Who are you trying to protect?

Seriously? This forum is wall-to-wall research about techniques other than ablation. He didn't say he was going to remove it. He said he's simply going to move it to the General Health forum. There's no need for paranoid accusations.

I'm interested in AFIB, not General Health. As someone who has been attending stem cell conferences for over 5 years, I'm well aware of the limitations. Still, I would deem your comment about Steve Ryan "Ryan is speculating rather wildly when he predicts that stem cell injections will become standard treatment for afib" as disrespectful, and ill-informed. I am sure he knows what he is doing without your negative commentary.

A few years ago, I would have criticized the very treatments that Shannon said that he will be undergoing, given the lack of research. Indeed, I still wouldn't rule out the need for multiple, costly, infusions and possible risks (tumors, etc). To claim knowledge of the what and whens of stem cell therapies is like predicting the weather. Still, I'm interested in their potential usefulness in the treatment of AFIB, as are other people that are reading this board. The more input from the community the better. I'm not either persuaded nor threatened by "anecdotal" reports. I learn from them.

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jpeters
Still, I would deem your comment about Steve Ryan "Ryan is speculating rather wildly when he predicts that stem cell injections will become standard treatment for afib" as disrespectful, and ill-informed. I am sure he knows what he is doing without your negative commentary.

When someone predicts a treatment will become standard practice with an air of authority and certainty when there isn't even investigational evidence available, that's wildly speculative. There's nothing disrespectful or ill-informed about it.

Nobody's being censored here.

Jpeters:

I agree with what you have said, we should be able to speak about the different things coming down the pike, whether they are about diet, supplements or stem cell. This has always been an informant site from way back, it seems that now it has become about ablations mostly. It is good and necessary to talk about ablations but don't stifle other innovations.

Liz

Hi JPeters,

I’m definitely not sensoring any mention of stem cells and AFIB, far from it! ... but I am ‘relocating’ claims of Stem Cell ‘cures’ of AFIB to the General Health forum where the topic can more appropriately be explored to every one’s heart’s content. And just FYI for the future, Thread titles with ‘Cure for AFIB’ in them almost always trigger my radar for a closer assessment, as in the title of this thread: “Stem Cell Cures for AFIB”.

As a rather new poster here you may not be aware that the General Health Forum is far from some purgatory for unwanted posts! It is a very valuable addition to our forum offerings that was added by Hans Larsen, creator of this resource, as a great (though imperfect) solution for hosting ongoing discussions of various frontier topics in Medicine and general health as well.

Topics that we simply cannot afford to host on the main Afibbers Forum along with all the ‘currently available’ AFIB treatments and insights including our dedication to life style risk reduction and nutrient/electrolyte repletion that this forum long pioneered well before any other AFIB resource on the Internet began discussing such topics in depth. And, of course, our focus too on Afibbers Forum addressing the best of electrophysiology.

The delimma I face as owner and moderator of this resource, including both the Afibbers Forum and the General Health Forum, is making choices in which topics fit better within the broader topic focus of the General Health Forum in the service of not allowing the Afibbers Forum to inadvertently be overwhelmed by either claims for ‘cures’ not yet substantiated, or with topics too tangential to living with AFIB or its treatment, and thus risk losing the intended focus of the Afibbers Forum which is often the first place new comers to our resource look for advice and help.

Such new comers, of which we now have a tidal wave finding our site these days, I am well aware can feel stressed enough and overwhelmed just trying to find their sea legs in this new and often daunting world for them of AFIB, without having to also wade through more speculative or controversial topics that could easily take over the first two pages of Afibbers Forum if not for having such a valuable adjunctive Forum like General Health Forum where I give a wide latitude for open exploration of such interesting but perhaps more speculative topics.

It’s mostly just a forum management decision we have found very valuable long term. But please see that this has nothing to do with sensorship jpeters, and certainly not sensoring interesting topics like the possible future role of stem cell therapy in cardiology.

What most of our old timers do to help me out ... as well as help keep both forums here humming along ... is to ‘self-select’ which topics they post that best belong in which forum. I much appreciate that effort as well sparing me having to redirect threads from one forum to the other.

And again, as a heads up, any thread titles appearing with “AFIB cure” in the title are at very high odds of getting moved off Afibbers Forum, especially least newer folks assume there is a tacit support for such claims appearing on Afibbers Forum. And even on General Health forum I may well contact the thread author suggesting a small edit to such a declarative ‘AFIB cure’ in the thread title, but beyond that give a much wider berth for the discussion to unfold within the posting decorum limits of both forums.

Until there is a recognized true and consistent ‘cure’ for AFIB, I feel strongly that we should clarify when we are talking about a functional ‘cure-like’ effect, such as total freedom from all atrial arrhythmia off all AAR drugs either spontaneously achieved for years on end, or by some other documented means and most often acheivable in our long forum experience, by completion of a successful ‘expert ablation process’. However, none of those methods stand up to my admittedly strict test of a permanent genuine cure of AFIB ... though a decade plus long confirmed freedom from all AT/AFIB by a defined method is certainly worthy of a functional cure-like status and is definitely a true blessing for the recipient in any event, as I can attest firsthand.

Regarding my upcoming regenerative med procedure on my hands, jpeters, I too have attended many functional/regenerative medical conferences since 2007 where I have worked at 4 to 5 such conferences each year in the US and a few in Europe up through early 2014 when I took over ownership of this website. Since then, I attend far more EP conferences, but still have managed to attend and work at the one large annual A4M World Congress each December in Vegas helping out my good friend Dr Thierry Hertoghe from Brussels Belgium with his presentations to physicians at this conference. As you no don’t know, this particular A4M conference hosts a good number of update talks on the latest in stem cells and regenerative medicine overall each December. And that my wife and I both attend since we both have benefited from such procedures in recent years and thus have a keen interest in staying informed about this exciting new branch of medicine.

I agree too, umbilical cord procedures only recently clearly crossed my threshold for a positive risk/reward equation for me, especially for the type of procedure planned for my hands.

Finally, feel free to post about any relevant topics that fit in either Afibbers Forum or General Health Forum and now that you know perhaps a bit more of why and how we use the two forums, I much appreciate your help too in self-selecting which threads you wish to post might best fit in the General Health Forum. For borderline threads where they may still be AFIB-related content in the topic, I generally will let it stay on the Afibbers Forum a few extra days so everyone is familiar with the thread before moving it over to the GH Forum.

Be well,
Shannon



Edited 1 time(s). Last edit at 05/28/2018 04:13PM by Shannon.

Shannon, feel free to change the title to anything that makes you comfortable.

PS ... another interesting anecdote regarding the future of cardiac related stem cell procedures is that St Davids Med Center with Dr Natale’s Texas Cardiac Arrhythmia Institute’s research department has worked closely with University of Texas Genetics Research and I believe Dell Medical School as well in the development of the first of its kind highly selective and highly purified Cardiac stem cells that was featured on the cover of the prestigious internationally renowned Biology journal called ‘Cell’ about one and a half to two years ago.

I’m close friends with Mitra Mohanty Director of TCAI Research and she showed me the Gally photo of these luminous green cardiac stem cells that she said were the essential big step toward creating these highly purified Cardiac specific stem cells necessary through mass reproduction and banking of these stem cells, to really launch the next long phase of research teams around the world who can now move forward with these consistently pure and potent cardiac stem cells into real world cardiac procedures.

FYI, she said researchers are hoping for big insights and breakthroughs over the next ten plus years in utilizing such specialized stem cells in the service of improving heart health universally. There really is hope for big steps forward, but like in most revolutions it will also take time and likely with some set backs along the way and likely with some unexpected leaps forward as well as our understanding of just how to apply these exciting therapies evolve. We certainly are not yet near curing AFIB, though at some point that may well be the outcome and that will be a day to celebrate for sure when, and if, it arrives!

Shannon



Edited 1 time(s). Last edit at 05/28/2018 04:39PM by Shannon.

Shannon, very interesting post. I'm hopeful at some point a cure for AFIB will be possible. Impossible to say when.

It would be a wonderful advance if stem cell research proved to be of benefit for treating a-fib, but many studies and research projects must occur before it can be proved. The day when a-fib can actually be considered "cured" will probably occur in the future...but it may be many years before that happens. It is good to know that research is being done approaching it from several different angles.

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JustMeToo
The day when a-fib can actually be considered "cured" will probably occur in the future...but it may be many years before that happens. It is good to know that research is being done approaching it from several different angles.

Well, just think how long it takes to go through 6 ablations.

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jpeters
Well, just think how long it takes to go through 6 ablations.

Ha! JP ... we can hopefully help with that caveat too!

It starts by encouraging folks to partner with the most experienced EP they can possibly connect with and follow only them through to a durable permanent freedom from all AT in what should amount to an average of roughly 1.4 total ablations when factoring in a large group of even long standing persistent AFIB patients seeking a successful ABL process from such a maestro-level performer.

Making a great uncompromising choice, up front, on who to entrust one’s hearts care too is vital, plus then doing all we can to reduce any life style/cardiac risk factors we may have over a dedicated minimum of 6 months to one year period either prior to, or concomitant with, beginning that expert ablation process (once it becomes clear such an ABL process will almost certainly be required in your case) along with adopting the rest of the common sense self-health good habits appropriate for your body that we recommend ... all taken together this protocol can truly help insure you are one of the ‘lucky’ ones who can and will get this beast out of your life and put to bed for good with the least total amount of work required to experience and enjoy such a total freedom across the board long term!

I’ve witnessed this reality come true so many times across the legions of afibbers I’ve had the very real privilege and great good fortune to have helped usher through this process... It really does makes a true blue believer out of you to see the same overall outcome come to pass time and again among so many very different afibbers who just followed these same basic steps keeping their eyes on the prize!

Cheers!
Shannon

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jpeters
Well, just think how long it takes to go through 6 ablations.

Seven years in my case. In fact, my fourth ablation happened in 2014, the same year that Ryan predicted stem cells would soon become the definitive treatment for afib. I wish he had been right and I could have at least enrolled in a clinical trial last year instead of doing yet another ablation, but no clinical trials existed -- and still don't. As I said earlier, I think the cure for afib will ultimately come from gene therapy of some type, perhaps stem cells. There's no question that ablations are a crude solution, but the reality is it's one of only two proven solutions we have: ablation and drug therapy. And we know the available drugs suck every bit as much as ablations (even more in my opinion and the data agrees). Genetic treatments are years from becoming reality, as Shannon pointed out.

And there's the rub. Keep in mind that many -- probably most -- people who read this forum don't have a science or medical background. What they have is afib, and many of them are scared, feel hopeless, and are getting conflicting advice from friends, relatives, the internet, and even their doctors. When they search the web they find an avalanche of information, some of it factual and reliable, some of it total nonsense, and a lot of it somewhere in between. Lacking a science or medical background, what are they to make of it all?

So they find a site like this and start reading. It's still pretty overwhelming. Lots of lingo they don't understand, lots of talk about magnesium and potassium and taurine and cardioversions and persistent vs. paroxysmal and.... well, you get the idea. So I think what Shannon is aiming for here is to keep this forum tuned to help those folks, to only present information to them that's reasonably credible medicine they can ask their doctor about, and to keep the more speculative stuff over on General Health. I think it's a perfectly reasonable solution and good way to separate afib support from general discussion involving almost anything.

Carey, I respectfully disagree. I find research into AFIB treatment alternatives very interesting, and a break from the dismal options now available. Definitely, there's a lot to learn about AFIB, but I've never known education to kill anyone. It's lack of education, for example, when people trust the experts, that get people into trouble. Neither you nor anyone else knows when a treatment breakthrough will occur. It's an ongoing process. .It didn't confuse me to research hybrid ablation after meeting with an EP Tuesday.

Not sure what you disagree about, but do you not get it that not everyone has your knowledge and ability to make sense of it all? Distinguishing between nonsense and useful information isn't as obvious to everyone reading this as it may be to you,

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Shannon
We all live in the present, like it or not, and one key to happiness I have found is being at ease with reality as we find it and with accepting living at ease and at peace with the unknown.

Amen to this. Live in the present but have hope and plan for the future.

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Carey
Keep in mind that many -- probably most -- people who read this forum don't have a science or medical background. What they have is afib, and many of them are scared, feel hopeless, and are getting conflicting advice from friends, relatives, the internet, and even their doctors.

This is/was me. Through the wonder of technology and the giving nature of some very, very good people, I have a layman's understanding of the science/medical aspect. And the hopelessness and fear is gone.

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AB Page
And the hopelessness and fear is gone.

The elimination of panic is Step #1. That should be the goal of any support group, forum and, yes, even healthcare providers!

As for ablation, when done properly, I would call it a very effective treatment for AF. I wouldn't call it a cure.

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Carey
Distinguishing between nonsense and useful information isn't as obvious to everyone reading this as it may be to you,

You have a point. To benefit from a community dialogue requires the ability to listen to the experiences of others. So a problem could be either too little or too much information (i.e., expert's syndrome).

Carey said;

{ Distinguishing between nonsense and useful information isn't as obvious to everyone reading this as it may be to you,]

Really, so you are saying that most coming here are stupid?

You are being stroked jpeters.



Edited 1 time(s). Last edit at 05/29/2018 01:17PM by Elizabeth.

Shannon:

I have always thought that the General Health Forum was for problems other than AF, anything to do with AF was on the AF forum. So, if I have something that has curbed my AF, not cured but has lessened my episodes I then have to post it on the General Health Forum because there are no studies that have validated my claim. A lot of claims throughout the years that have helped people would be lost as very few people go to the General Health Forum.

If that is the case, then I want valid studies that back up what is being said on the AF forum.

Liz

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Elizabeth
Really, so you are saying that most coming here are stupid?


If that is the case, then I want valid studies that back up what is being said on the AF forum.

Liz

You don't want to do that....stupid people won't know how to interpret them.



Edited 1 time(s). Last edit at 05/29/2018 01:54PM by jpeters.

You have taken my words out of context:

I didn't say that people coming here are stupid, Carey said 'many coming here may not be able to distinguish between nonsense and useful information. I have found that most that have come here are very intelligent, they found this site and have added a lot.

Adios
L



Edited 1 time(s). Last edit at 05/29/2018 02:26PM by Elizabeth.

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wolfpack

The elimination of panic is Step #1. That should be the goal of any support group, forum and, yes, even healthcare providers!

Panic and/or anxiety can be and is debilitating for afib patients. There is no shame in taking something for it. And should a patient take a benzodiazepine, I highly recommend reading the benzo "bible", found here, as they are addictive, but highly effective.

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Elizabeth
You have taken my words out of context:

I didn't say that people coming here are stupid, Carey said 'many coming here may not be able to distinguish between nonsense and useful information. I have found that most that have come here are very intelligent, they found this site and have added a lot.

Adios
L

Right....that's what I was referring to

It's amazing how irony, humor, sarcasm, etc., fails on a message board. Think I'll go back to my policy of never posting.



Edited 1 time(s). Last edit at 05/29/2018 02:46PM by jpeters.

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wolfpack


The elimination of panic is Step #1. That should be the goal of any support group, forum and, yes, even healthcare providers!

I agree with you. But when I expressed hopeless, frustration, anxiety, depression and fear about afib, I got slapped by some people who may have dealt with afib for too long that have forgotten about the initial emotions and been dismissive. Most doctors I've seen seldom care about emotional effect either. It's far from the goal that you mention in above.

Luckily I've got rid of the fear mostly by reading the book The Power of Now by Eckhart Tolle. It's not about afib but how our mind work.



Edited 1 time(s). Last edit at 05/29/2018 02:46PM by kong2018.

j.

OK, truce.

Sometimes hard to distinguish between all in the written word, a lot easier in person. Please don't leave, we need your sense of "humor"

Liz

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kong2018
Luckily I've got rid of the fear mostly by reading the book The Power of Now by Eckhart Tolle. It's not about afib but how our mind work.

That's a different process for each person, I'd guess. For me, I decided to test the theory that AF wasn't life threatening. My first set of doctors gave me horrible advice (take benzo, stay out of the gym, increase beta blocker, etc). I said the hell with all that and went to the gym anyway. I couldn't run, so I decided to speed walk outside as fast as I could. By their reasoning, my heart rate should go out of control and I'll fall over somewhere. Maybe some good Samaritan would find me or maybe not. I'll just see. Instead of any of that happening, I kept getting faster and faster, and after about mile 3 I found I could jog. By the time I got back to the gym, I hopped on the treadmill and the pulse meter was able to establish my heart rate when it could not before. I wound that thing up to my normal speeds and went to 5 minutes or so to see what would happen. Which was nothing. I had just learned my first real lesson in what would turn out to be vagally-mediated AF. The fear was conquered at that point, and the real road to recovery began.

Yea. One thing I should be thankful is mine is vagal afib. So I can run and do whatever I want like before without worrying it would trigger afib. Night time is still a bit tough though.

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Elizabeth
j.

OK, truce.

Sometimes hard to distinguish between all in the written word, a lot easier in person. Please don't leave, we need your sense of "humor"

Liz

Amazing..edited in the ref to because I was sure someone would blast me for calling people on the board stupid. That, on top of sharing a topic I thought would be of interest. I've done this enough where I should know better.

PS...have had a similar problem with texting....very open to misinterpretation.



Edited 1 time(s). Last edit at 05/29/2018 06:43PM by jpeters.

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Elizabeth
Really, so you are saying that most coming here are stupid?

WHAT?! How the heck did you interpret my comments that way? I said no such thing, meant no such thing, and I don't "stroke" anyone.

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wolfpack
That's a different process for each person, I'd guess. For me, I decided to test the theory that AF wasn't life threatening. My first set of doctors gave me horrible advice (take benzo, stay out of the gym, increase beta blocker, etc). I said the hell with all that and went to the gym anyway. I couldn't run, so I decided to speed walk outside as fast as I could. By their reasoning, my heart rate should go out of control and I'll fall over somewhere. Maybe some good Samaritan would find me or maybe not. I'll just see. Instead of any of that happening, I kept getting faster and faster, and after about mile 3 I found I could jog. By the time I got back to the gym, I hopped on the treadmill and the pulse meter was able to establish my heart rate when it could not before. I wound that thing up to my normal speeds and went to 5 minutes or so to see what would happen. Which was nothing. I had just learned my first real lesson in what would turn out to be vagally-mediated AF. The fear was conquered at that point, and the real road to recovery began.

I also did testing, though nobody had put me on meds. I had an early Polar HR monitor. Went out to see what it would tell me. I learned that walking at a fast pace, that in NSR I would have a HR of <100, in afib it was 145. I was out on the streets and had to run to avoid cars. My monitor went to 230. And then to NSR... My first exercise conversion. I called my GP that afternoon and asked him if I'd done something stupid. He said no, perfectly fine. Several months later, unfortunately, my exercise conversions no longer worked.

I later learned that as a vagal afibber, exercise would not trigger afib immediately, but in fair excess would create a delayed trigger. And the delay could actually be several days in extreme cases. I learned what I could and couldn't do. What I could do without creating a delayed trigger was actually quite a lot. But I learned not to cross a subjective line of "too much." I pretty much continue following this rule to this day, 14 years into afib.

George

Exercise conversions worked for me mainly in the mornings. Early on I was taking only a beta-blocker (first cardiologist, fired soon thereafter) which I didn't know at the time was contraindicated for vagal AF. Those days I'd get second episodes starting around noon, which converted poorly with exercise. When I got overly frustrated with this one night, I slammed a couple of beers in disgust and despair. 20 minutes later, NSR. That worked repeatably for evening episodes until my new (and current) cardiologist got things sorted out with anti-arrhythmic only (propafenone) and waitlisted for ablation.

Now, that being said, I'm probably a bit of a "pink zebra" when it comes to AF. But it does go to show that the doctors don't know everything about AF and any sort of blanket treatment for it is not a good approach in my opinion. AF is just too personalized.



Edited 1 time(s). Last edit at 05/30/2018 09:47PM by wolfpack.

Well I found the topic interesting, I wouldn't have taken any notice if it was in general health and makes a change from ablation.

Elizabeth,

You may have forgotten that I have long reserved the right to relocate to the General Health forum the periodicaly reappearing claims on this forum (and on most other AFIB forums from time to time) of an AFIB ‘cure’ ... in addition to other less directly related to AFIB health topics for the sake of keeping the focus on this Afibbers Forum not only on AFIB related topics, but also to avoid the inevitable confusion and often mistaken choices people of all stripes, both highly intelligent and very familiar with medical and AFIB lingo and understanding as well as those who perhaps are less well-informed about the nuances of the field, can easily make when discussions on this Afibbers forum are promoting AFIB ‘cures’ at this stage of our collective knowledge in which in my view, as well as vast majority of thought leaders of this field, the word ‘AFIB cure’ has not yet proven to be an accurate term.

I realize too that welcomed new poster Jpeters used the term in this context quite innocently in reference to another man’s quote from a different forum, and that he clearly wasn’t declaring stem cell treatment a clear and present cure for AFIB himself.

I brought up the point about using a word like ‘cure’ with more care than normally we would even consider, as we have experienced in our long history on this forum the misleading, distracting and, at times, highly polarizing consequences of allowing pronouncents/claims of various ‘AFIB cures’ and in the past, too much of a free reign on occasion on the Afibbers Forum when our GH Forum remains a perfectly suitable venue for exploring such topics without potentially confusing especially a lot of relatively new comers trying to sort out how to go about putting AFIB in their rear view mirror in the most definitive way with the least amount of time and overall work required.

In any event, you are aware of all this Liz and have been one of those long timers here who has tried to funnel the right topics to the General Health forum in the past, which I much appreciate.

Again no one, ceratainly not me ... nor Carey from reading what he said above ... is in anyway advocating sensoring stem cell discussions ... but when they are presented such that it might be misconstrued as a current or imminent ‘cure’ for AFIB then all who wish to explore that idea further here can do so on the GH Forum long term. For the time being I’ve left it on the Afibbers Forum and will place a clear redirect link to to topic once it is moved to the General Health forum. So nothing will be lost here not unavaialble.

My primary concern, especially for newer posters/Afibbers, on the Afibbers Forum who are so often looking for more immediate plans of action may well use such reports as inferences and implications that an easy whiz bang cure might be just around the corner, and thus I’ve seen such folks who are in a rapidly accelerating phase of their atrial arrhythmia continue to procrastinate and put off doing anything effective ... and why not when some folks on Afibbers Forum suggest a sure cure is just around the corner.

And then possibly one year to five years later they find themselves having progressed to long standing persistent AFIB with possibly significant increases in structural remodeling and quite likely a more challenging road ahead to earn true freedom from all atrial arrhythmia. I’ve seen some version of this scenario play out time and again among the many legions of Afibbers I’ve helped review their best options and timing with when addressing this complex and frustrating cardiac condition.

And that includes in my own case when well over a decade ago I was still among the kings of procrastination and filled with confident hubris that I would never even consider, much less need, an expert ablation process and would have laughed at anyone who suggested otherwise. Especially, after a period of almost 5 years starting within a year after discovering this wonderful online resource starting in 2002 ... eleven years after my first documented and very short PAF episode ... and adopting all the life style and electrolytic repletion good self-health steps that had such a good effect on almost, but not quite elimImatimg what just prior to 2002 had progressed to a very active and lousy frequent PAF episode condition.

At the end of that five year period of outstanding success with The Strategy and multiple other reinforced good health habits, it was a real shock to suddenly find my AFIB/Flutter roar back out of control again when living in Amsterdam to a degree where no amount of Magnesium/Potassium nor any of the other redoubled natural health improvement efforts had any positive impact at all as I hurtled into an agressive case of persistent AFIB/Flutter that only the two step expert ablation process by Dr Natale starting 10 years ago was able to truly quell to this day.

Obviously, I am all for especially early stage Afibbers (roughly during first 3 to 5 yrs) to dive into life style risk reduction head first and learn everything possible about improving fundamental self-health that you know you can stick with prior to moving to such an expert ablation process.

But I’ve also learned, not only from my own in-depth experience, but from walking hand-in-hand beside so many other Afibbers here over the years who have experienced more or less the same remarkable long term transformation free of atrial arrhythmia overshadowing one’s life when one is open to and adopts this truly integrative approach combining the best of life-style improvement and CVD risk reduction early on plus then adding in that expert ablation process only after a highly discriminating choice of who to entrust one’s heart’s care to, should the initial protocols fail to essentially eliminate, or so greatly minimize, any arrhythmia recurrance that you truly feel you have this beast well under control, preferably with minimal to few cardiac drugs required, and no AAR drugs ideally.

Each person will have to make their own choices as to how they will embrace this challenge their hearts have brought to their lives. Though it pains me to see folks holding out for still highly speculative treatments or one’s that have a very spotty track record to-date (i.e. FIRM mapping and ablation) when there are genuine options for gaining real and consistent freedom long term from even seemingly intractable persistent AFIB in the here and now!

Nevertheless, I do clearly see the big picture here and each person will tend to come to such a decision on their own time schedule and often guided by the severity and frequency of their AFIB/Flutter symptoms. Most folks I’ve seen will typically hold off on adopting an expert ABL process until those symptoms begin to demand too great a cost on one’s sense of well being and simply interrupt their own lives too much, not necessarily when it might be ideal in terms of minimizing their overall AFIB burden throughout their lives from initial diagnosis to durable freedom from all atrial arrhythmia.

Cheers!
Shannon



Edited 2 time(s). Last edit at 06/03/2018 05:27PM by Shannon.

Shannon:

Afib is a highly individualized malady, some people don't even feel it, some are in a very bad way, I know you understand this. For me, I am going on having episodes of AF for almost 20 years, I didn't get them very often for many years, they came in the evening when at rest. I found this forum and read about magnesium, which I started taking, I read where George N. said to chew the PIP to lessen the time in AF, I did these things which helped me a lot. If I got a lot of episodes and they were really bad, I would probably have considered an ablation. An ablation isn't all moonlight and roses either, many have to get more than one ablation, some have to continue on blood thinners, there have been other problems. I understand that one is to seek out the best which is Dr. Natalie, many may not be able to go with him.

Anyway, what I am trying to say is I was able to find this site and read some success stories which may not be a "cure" but sure did help a lot. There could be things that people have tried and helped which they can bring to this board and could be lost going to the General Health Forum. I always thought if it was tied to AF then it could be posted on the AF forum. I was getting a lot of episodes this past Jan., Feb, there has been a few things that I have done and my AF episodes have stopped for at least a month (which is great), I will see what happens. I am grateful for this site.

Liz
'

Shannon, It's interesting that in "Lone Atrial Fibrillation Towards a Cure", Hans Larsen described Ablation as a cure, which it certainly is not. Yes, stem cell therapy is part of the search for a cure, in this case for Atrial Fib, so the topic already has over 400 views. Via discussion, we learn the risks, false claims, and promise of any potential "cure." To me, that's the value of a discussion board.

My red flag also is raised immediately with titles including the C word. My knowledge of stem cell treatment for afib is very little, however the premise seems to be for treating heart disease while some with afib realizing relief? For my entire years with afib I have always been informed by all medical professionals involved that there was nothing wrong with my heart. There also seems to be more questions on what exactly is "cured" by stem cells and a big question on whether heart tissue is actually being renewed/repaired or if hormones are simply released to aid heart function. Regardless, we are further than closer from any cure through this method, IMHO. When there is a cure, wake me up. Until then, lose the C word please.

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jpeters
Shannon, It's interesting that in "Lone Atrial Fibrillation Towards a Cure", Hans Larsen described Ablation as a cure, which it certainly is not. Yes, stem cell therapy is part of the search for a cure, in this case for Atrial Fib, so the topic already has over 400 views. Via discussion, we learn the risks, false claims, and promise of any potential "cure." To me, that's the value of a discussion board.

All that is true Jpeters, and Hans wrote that book at a time when he was hopeful for an 'eventual' cure, as we all are! Hans also clearly and deliberately noted in his title: "....Towards a Cure" ... as in moving hopefully forward towards a cure in the future ... not implying the present.

In any event, as noted often on this board, I obviously have no problem with discussions of promising and even many speculative therapies that may well help out along the path of our collective life experiences. But again, for the purpose of organizing our two forum offerings such as to keep the focus as much on the hear and now of effective therapies while minimizing the risk of inadvertently confusing or misleading many new-comers to our resource who are so often looking for clear actionable therapies we can recommend in the present, we decided to redirect any more speculative therapies or concepts to the General Health Forum as we have seen, in fact, that without doing so the main forum will quickly be overrun with all sorts of ideas and angles ... many of them very interesting and potentially useful, but that can quickly dilute and muddy the waters on our AFIB focused forum.

For a similar reason, I've also relegated discussions about, or inferences of, actual 'AFIB Cures' to the GH forum too so that everyone who wishes too will have full access to such discussions without risking overwhelming the Afibbers Forum with such a broad range of ideas and concepts that many newcomers can become discouraged, as I can tell you, for sure that it has done so for many such folks in the past who came to Afibbers Forum looking for sound realistic tips and insights for their very real world AFIB.

When just about anything is allowed to post on the Afibbers forum, Hans Larsen discovered during the first 14 years of our resources existence ... and now myself the last 5 years
... as the only one's who have had to address these issues, that and we both agree with the current use and division of topics on Afibbers Forum and the General Health Forums.

This is likely to remain the case, regardless of who or when anyone has mentioned the word 'cure' on either the Afibbers or GH Forums in the past. I trust now we can move this thread to the GH Forum where it properly belongs.

Cheers!
Shannon

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Shannon


All that is true Jpeters, and Hans wrote that book at a time when he was hopeful for an 'eventual' cure, as we all are! Hans also clearly and deliberately noted in his title: "....Towards a Cure" ... as in moving hopefully forward towards a cure in the future ... not implying the present.
Shannon

Actually, I just read the book, in which he described ablation as a cure. Anyway, put the thread anywhere that makes you comfortable, if changing the title of the post is too much trouble. Good luck with your stem cell treatment. I'm sure you've researched all the risks.