Stem Cell Cures for AFIB

Re: Stem Cell Cures for AFIB

jpeters — Mon, 18 Jun 2018 14:06:12 +0000

Quote
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.

Re: Stem Cell Cures for AFIB

Shannon — Sun, 17 Jun 2018 20:28:05 +0000

Quote
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

Re: Stem Cell Cures for AFIB

hwkmn05 — Tue, 05 Jun 2018 10:09:22 +0000

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.

Re: Stem Cell Cures for AFIB

jpeters — Mon, 04 Jun 2018 06:35:14 +0000

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.

Re: Stem Cell Cures for AFIB

Elizabeth — Sun, 03 Jun 2018 20:12:00 +0000

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
'

Re: Stem Cell Cures for AFIB

Shannon — Sun, 03 Jun 2018 17:54:08 +0000

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

Re: Stem Cell Cures for AFIB

colindo — Thu, 31 May 2018 06:49:16 +0000

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.

Re: Stem Cell Cures for AFIB

wolfpack — Wed, 30 May 2018 18:06:56 +0000

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.

Re: Stem Cell Cures for AFIB

GeorgeN — Wed, 30 May 2018 03:17:37 +0000

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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

Re: Stem Cell Cures for AFIB

Carey — Wed, 30 May 2018 00:57:17 +0000

Quote
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.

Re: Stem Cell Cures for AFIB

jpeters — Tue, 29 May 2018 22:19:51 +0000

Quote
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.

Re: Stem Cell Cures for AFIB

kong2018 — Tue, 29 May 2018 20:18:03 +0000

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.

Re: Stem Cell Cures for AFIB

wolfpack — Tue, 29 May 2018 20:08:16 +0000

Quote
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.

Re: Stem Cell Cures for AFIB

Elizabeth — Tue, 29 May 2018 18:52:21 +0000

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

Re: Stem Cell Cures for AFIB

kong2018 — Tue, 29 May 2018 18:46:02 +0000

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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.

Re: Stem Cell Cures for AFIB

jpeters — Tue, 29 May 2018 18:41:25 +0000

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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.

Re: Stem Cell Cures for AFIB

AB Page — Tue, 29 May 2018 18:25:15 +0000

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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.

Re: Stem Cell Cures for AFIB

Elizabeth — Tue, 29 May 2018 18:11:36 +0000

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

Re: Stem Cell Cures for AFIB

jpeters — Tue, 29 May 2018 17:52:36 +0000

Quote
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.

Re: Stem Cell Cures for AFIB

Elizabeth — Tue, 29 May 2018 17:31:10 +0000

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

Re: Stem Cell Cures for AFIB

Elizabeth — Tue, 29 May 2018 17:14:47 +0000

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.

Re: Stem Cell Cures for AFIB

jpeters — Tue, 29 May 2018 15:52:44 +0000

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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).

Re: Stem Cell Cures for AFIB

wolfpack — Tue, 29 May 2018 15:32:11 +0000

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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.

Re: Stem Cell Cures for AFIB

AB Page — Tue, 29 May 2018 15:06:08 +0000

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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.

Quote
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.

Re: Stem Cell Cures for AFIB

Carey — Tue, 29 May 2018 04:10:28 +0000

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,

Re: Stem Cell Cures for AFIB

jpeters — Mon, 28 May 2018 23:29:07 +0000

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.

Re: Stem Cell Cures for AFIB

Carey — Mon, 28 May 2018 22:46:29 +0000

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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.

Re: Stem Cell Cures for AFIB

Shannon — Mon, 28 May 2018 22:44:50 +0000

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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

Re: Stem Cell Cures for AFIB

jpeters — Mon, 28 May 2018 21:51:44 +0000

Quote
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. :)

Re: Stem Cell Cures for AFIB

JustMeToo — Mon, 28 May 2018 21:19:18 +0000

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.