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My journey so far

Posted by MattTheDuck 
My journey so far
January 10, 2024 06:48AM
Hi all, I've recently joined the forum, so I thought I'd let you know a little bit about my journey.

I had my first episode when I was 35 (2008) in the middle of the day when during a reasonably stressful time. That was a rapid AF scenario and settled down pretty quick after they gave me Flecainide in ER. Everything was fine until 2018, when I had been having another stressful time, but had also started to go on a health kick - running regularly and loosing weight. I had several episodes that all triggered during the night and would self resolve within a few hours - usually after I got up and had breakfast. I was getting run down in general, so gave up on the exercise and the episodes stopped. I was still controlling my weight through diet for a while.

Fast forward to Feb 2021 and I decided enough was enough, I needed to get fit, so this time I got into cycling. Again I had had some preceding stress as I was without work for 6 months during 2020. My weight was dropping (lost about 7 kilos in the first couple of months from about 95kg) and I was getting fit. Then my first episode since 2018 happened again during the night after a particularly big day - went for a ride during lunch and then jack hammering up concrete after work. The episodes continued for months (about every 1-2 weeks) - all during the night for several hours, reverting when I got up. However, I decided to continue with the exercise as I enjoyed being fit and less overweight. I discussed all this with an EP, but decided to not pursue an ablation (elective surgery was banned in our state at that time anyway, Vic, AU). A lot of the meds we discussed slowed the HR and my resting HR is in the mid 40s (can be in the 30s sometimes), so didn't really want to slow that any further (when I have AF the HR is generally averages 70-90). He did give me Flecanide as a pill in the pocket, but I never found it more helpful than naturally getting back to NSR. I had tried other things too, like boosting magnesium. I also tried the Mediterranean diet as some websites were recommending it, but it seemed to make me worse.

About Oct 2021, one of my daughters suggested I try the Failsafe diet as it had been helpful to our family for other medical things. Switching to this immediately stopped all my episodes to my great relief. After a while (May 2023) I wanted to cut my carbs as my HBA1C was getting high (showing I’m quite possibly insulin resistant as I was not an excessive carb eater), so I morphed out of the diet to eat more diverse foods while reducing carbs. Strangely, I didn’t immediately twig that I was straying until I had a single episode of AF. So I completely cut the carbs and found I was fine on a less strict version of failsafe. I drifted down the slippery slope again in Nov 2023 when I started eating bacon and slow cooked pork and sure enough another 3 episodes about 2 weeks apart. You’d think I’d put 2 and 2 together, but I was so convinced that all I needed to be was low carb that I could eat anything else. Anyway, I switched back to strict failsafe on about the 20th Dec (just in time for Christmas smiling smiley).

I was fine till about 4th Jan when I woke up in the night with a very unstable heart (my term for having lots of flutters and palpitations etc but still in sinus rhythm). I really didn’t want to flip into Afib, so I got up had some MgCl, Bicarb and DMSA. I sat on the side of my bed for an hour or so - leaning forward seems to be the least provocative position. Eventually I was too tired and went to sleep (elevated, but reclined) and resigned myself to it will be what it will be. I woke up 3 hours later and was much relieved to be in a very nice NSR - that’s a small victory for me - I’ve really only succeed in avoiding the big violent fish flopping in my chest (those first few seconds when it flips into Afib) a couple of times and this was one of them. The other time I had used DMSA as well, but I have also used it and failed to prevent it. Anyway on reflection I realised I made another silly mistake - I had eaten Turkey a couple of nights earlier (and the morning before) - Turkey is considered to contain the same amines as Pork (according the Friendly food book), but I had assumed it was like chicken - well it is a bird that looks like a big chicken. As you gather, I don’t eat Turkey much, but this was reduced for quick sale (it was MAP) - later I found this article that says how the amines get really high in Turkey when packaged in a modified atmosphere (MAP), so that really was a double fail on my behalf: [pubmed.ncbi.nlm.nih.gov].

So in short, the Afib play for me is: have some high amine foods, don’t sleep that night due to over active mind, run on adrenaline the next day, struggle to sleep, then fight Afib and usually loose, sleep the rest of the night through it, get up in the morning, revert to NSR within an hour which usually involves almost fainting while my heart goes crazy reverting, then be exhausted for days.

If I stay ‘failsafe’ it gives me heaps more runway and as long as I don’t get overtired I can keep it at bay. The reason why DMSA is in the mix is that I do have a high lead load (and mercury too, but not as crazy high as lead) which leaves me with a lot of fatigue issues. Doing DMSA cycles will hopefully bring the levels down, but it’s going to take years (if ever - apparently our bones are a massive lead sink, so pulling it out of the blood stream just brings more out of the bones until you can deplete it, but doing urine or blood tests gives you no idea how big the sink is). Some people just don’t seem to naturally detox well - and I seem to be one of them.

Loosing weight along the way somehow increases my sensitivity - whether I’m releasing toxins or reducing the bodies ability to ferret junk away, or I’m more fatigued because I do more I’m not sure. My BMI before weight loss was around 28 and now it is 21 (22 kgs reduction).

If anyone is interested in this food chemical (inc natural) classification diet, this site gives a bit of an intro into failsafe: [www.failsafediet.com] and there is a book put out but the Royal Prince Alfred Hospital Allergy Unit (in Sydney, AU) called Friendly Food: [www.slhd.nsw.gov.au]. I’m also happy to elaborate on what my failsafe diet looks like if anyone is trying to manage Afib through diet and think this might be worth exploring. A word of caution though - it’s very restrictive and paints you into a bit of a corner - there are not many eating out options (I usually have egg with a plain meat patty, but then I’m low carb as well which makes it extra hard, otherwise I’d have something like chips. Fresh steak is ok, but most restaurant steak is aged which is a problem. White fish is ok too, but difficult to get plain and I don’t really like it (like I have that luxury)).

Interestingly a lot of so called heart healthy diets go against the failsafe diet - i.e. they are very high in natural chemicals which is why they made me worse. I was trying fish oil tablets at one point too, but they are very high in amines, so again counter productive if you are sensitive to amines.

Apologies for the length - apparently I'm not good at concise...
Re: My journey so far
January 10, 2024 01:12PM
Hi, and welcome. Thanks for sharing your history. I think almost all of us are almost constantly mystified by AF. It comes and goes with some misleading predictability, and then it fools us.

I don't know if you are aware, but not only the bones can harbour toxins...adipose tissue does as well. Lots of it. And, when you begin the process of autophagy and begin to use up your adipocytes' deposits, you make a soup of toxins course through your circulatory system. Some of it feeds the heart and other organs, much of it is simply filtered out by the liver and excreted, Meanwhile, your bio-available mixture of toxins surges while this process is underway. So, if you have a touchy heart, you can see why it might object when it is awash with this toxic soup.

Personally, I have become used to aggressive walking after a normal walking start to a 'workout'. I used to be a competitive runner, but my first AF episode happened at the end of a maintenance run....which I probably ought to have missed that day, looking back. A combination of low-carb, say between 100-150 grams each day, which is a bit generous above what many in the diet industry would call 'low carb' (usually between 75 - 110 grams), and making sure I get plenty of sleep, which I sort of do, sort of...and walking for about an hour almost every day...that keeps the weight off and my heart in good condition. However, I have had two ablations, the first of which failed within days. I\m now approaching a year, next month, and feel really good.

We here tend to urge people to consider an ablation before, or as, the burden becomes intrusive and worrying. You'll go down hill faster with anxiety and an increasingly unhappy heart in all probability. Several members here have almost horrendous stories, but a really good EP will want a solid crack at your heart and want to help you. Just don't demure so long that you end up in persistent AF or worse.
Re: My journey so far
January 11, 2024 04:02PM
Hi gleaming, thanks for your response and thoughts. For now, I'm still in the phase of wanting to get to root cause - I get that it's a pipe dream, but it's the way I'm wired. So I see that ablation deals with the symptom, sometimes very effectively, but I still feel I have some time before it's inevitable. I've managed to get myself into remission for multiple years without episodes, a couple of times, so it gives me hope there are strings I call pull. If I follow these simple ruleswinking smiley, I can keep it at bay:
  • de-stress (which includes not taking too much on and setting very generous timelines for myself)
  • don't exhaust myself (which requires reading my body better as for too long I just pushed through)
  • follow the low threshold intolerance diet (failsafe) - but this does give me a very high tolerance for the first 2 (if I'm strict)
The low carb thing (I'm actually keto, so having <20g carb/day) is more about addressing my IR which might well be the thing that damaged me in the first place - had a pretty high sugar load as a kid and been overweight since then (until recently - and it was always a battle until I went keto). Clearing the heavy metals and other toxins will help, but I'm not sure how much they are part of cause (although Hg is implicated in neurological issues which I've also had more than my fair share of). I kind of suspected the adipose tissue thing, but I haven't been able to find any literature to really back it up in the past - esp around heavy metals.
Fortunately for me, exercise is not a direct trigger, but 1hr of moderate intensity every few of days is all I can do before the deep fatigue sets in. Getting out on the bike is great for my metal health - I just need to stay on it - I've come off a couple of times in the past couple of years - few broken bones later and some rehab - kind of ruins your day...
Re: My journey so far
January 11, 2024 06:00PM
Quote
MattTheDuck
The low carb thing (I'm actually keto, so having <20g carb/day) is more about addressing my IR which might well be the thing that damaged me in the first place - had a pretty high sugar load as a kid and been overweight since then (until recently - and it was always a battle until I went keto). Clearing the heavy metals and other toxins will help, but I'm not sure how much they are part of cause (although Hg is implicated in neurological issues which I've also had more than my fair share of). I kind of suspected the adipose tissue thing, but I haven't been able to find any literature to really back it up in the past - esp around heavy metals.
Fortunately for me, exercise is not a direct trigger, but 1hr of moderate intensity every few of days is all I can do before the deep fatigue sets in. Getting out on the bike is great for my metal health - I just need to stay on it - I've come off a couple of times in the past couple of years - few broken bones later and some rehab - kind of ruins your day...

One friend, who is a WPW (Wolff Parkinson White) syndrome ablatee (multiple bidirectional paths in the AV node) and now afibber has a heart that is very sensitive to carbs. She gets lots of PAC's that impair her ability to exercise if she eats high carb.

For me, long duration exercise seems to be restorative and not an afib trigger if I limit the intensity to a Zone 2 level (more info in the second paragraph in this link [www.afibbers.org] ).

There is a protocol to get stored toxins out of fat. It uses exercise, niacin and sauna to cause excretion of the toxins. It also suggests taking binders to carry the toxins out of the body. The protocol has been used in occupational medicine and also after the World Trade Center collapse on first responders who were exposed to toxins. If you have any interest, I will dig up more references.
Re: My journey so far
January 12, 2024 05:46AM
Hi GeorgeN, thanks for your response. I'd be very interested in an detoxing protocols you could share, Thanks!
Re: My journey so far
January 13, 2024 07:59AM
The niacin/sauna detox was initially developed by L Ron Hubbard, the founder of Scientology, to help people get out of drug addiction.

David Root MD, was an occupational medicine doc. In the late 1970's (I think - I'm writing this from memory), a flyer showed up in his mail, that he discounted initially. But he had a couple of patients with issues he could not solve. So he followed up, learned the protocol and started using it with good results for patients with many issues. The core of the protocol is an escalating niacin dose taken before some exercise (to heat up the body) followed by sauna. The idea is to get the body to release toxins out of fat, where the toxins are stored. The protocol includes supplements for replacing nutrients that are sweated out, as well as binders to help carry the toxins out of the body.

Dr. Root used this protocol in his practice for many years, including the above mentioned treatment of World Trade Center first responders.

Dr. Root (now long retired) and his son, David Root, wrote a book on the process: Sauna Detoxification Using Niacin: Following The Recommended Protocol Of Dr. David E. Root Paperback – December 2, 2022 by Daniel Lee Root (Author), David Emerson Root M.D. (Author)
[www.amazon.com]

David Root has a website: [www.getdetoxinated.com] and a FB group: [www.facebook.com]

George Yu, MD of Washington University of St. Louis, MO has used this protocol treating Gulf War Veterans. This is a search on Dr. Yu on this topic: [www.google.com]

David Root now coaches people remotely. Another coach is Anita Warren who has good reviews in another group. So as not to have her email address scraped, I'm putting it at the top of the iodine document that is attached to this post.

In the Roots' book they mention using iodine to detox heavy metals. I'm attaching a document that I wrote that has a bunch of references to this protocol. In a group I'm in, the moderator shared the heavy metal portion of a hair mineral test analysis. It was pristine. I have more personal experience with this protocol, but too early for results on me. Most standard of care folks think the iodine doses discussed are way too high, then there is a group of practitioners that say the protocol works wonders on people, but must be done carefully. Issues include that supportive supplements including selenium and vitamin C must be taken with the iodine. Also a salt loading protocol must be done for several weeks before starting to deplete the body of bromine. Iodine is in the same column of the periodic table as bromine and will displace it, but too quickly. This can cause bromine toxicity. The salt will do this more slowly and within the body's ability to detox the bromine. Lastly the iodine should be in the form of Lugol's solution. This is not a brand, but a formulation of 60% iodide and 40% iodine. It should be consumed 45 minutes away from anything else and not put in hot water, which will cause the iodine to evaporate.

I consulted with a person on the iodine protocol and they told me afib was the #4 reason people contacted him about going on the protocol. I think the idea is that people can get the same benefit from the mineral iodine as they do from Amiodarone, without the toxicity of the organic iodine molecules in Amiodarone. I can't comment on this as my afib burden is so low anyway. There was member from Canada here in the 2000's who swore by iodine for his afib.

I'm happy to answer questions, though am not an expert.

{edit} This is a book I'm reading on the topic. It is written by a man who was greatly helped with detox sweating. He goes into the science of sweat in great detail. [www.amazon.com]



Edited 2 time(s). Last edit at 01/13/2024 12:51PM by GeorgeN.
Attachments:
open | download - Iodine repletion afibbers copy.pdf (228.9 KB)
Re: My journey so far
January 13, 2024 07:49PM
Wow, thanks for the info - it looks really interesting. I'll definitely look into it.

I won't jump into it as I like to know all the ins and outs - obviously messing with our chemistry is fraught with danger, but with the right knowledge (e.g. ratios, pace, compensations, etc), it's a better avenue than staying toxic smiling smiley.

For when the time comes, where's the best place to get the iodide/iodine from? I know I could search, but kind of good to know whether it's over the counter or something a little harder to get given it's not mainstream.
Re: My journey so far
January 13, 2024 08:18PM
Quote
MattTheDuck
For when the time comes, where's the best place to get the iodide/iodine from? I know I could search, but kind of good to know whether it's over the counter or something a little harder to get given it's not mainstream.

You are in Oz, correct? Since I'm in the US, I'm not sure there. I know there is a way to make it yourself, but I've not done that yet. Try searching for Lugol's iodine in Oz and see what comes up. I get 12 packs from these guys [www.jcrowsllc.com]. Lasts me 16-18 months at 50 mg/day.
Joe
Re: My journey so far
January 13, 2024 08:48PM
Fascinating for me George and Matt because doctors thought that my AF in 2015 was possibly/probably due to taking 6 kelp tablets/day for a few weeks prior (forget the exact dose and duration) Each tablet was equivalent to 280mg Iodine.
I did this on the recommendation of a wholistic medical professional (qualified and very experienced pathologist who 'fixed' quite a few medical problems of friends and family previously).
At the time i had very low TSH which later turned into high TSH increasing over time to 7.58 in Jan 2020 mIU/L (suggested range 0.05-4.00). For the last three years i've been taking Levothyroxine 50 microgram/day.. Last time i checked my TSH a year ago and it was 2.5.

For the last few years i simply take Felec as PIP when i get AF. Naturally, i'd like to have no AF at all, hence my fascination with both your posts. Might be onto something but I'm not game to follow this detox protocol right now unless if ind a doctor who is conversant with it.
BTW, i'm in Melbourne, Australia.
Re: My journey so far
January 13, 2024 09:41PM
Quote
Joe
At the time i had very low TSH which later turned into high TSH increasing over time to 7.58 in Jan 2020 mIU/L (suggested range 0.05-4.00). For the last three years i've been taking Levothyroxine 50 microgram/day.. Last time i checked my TSH a year ago and it was 2.5.

One of the things that has been mentioned is that when a person starts supplementing with higher dose iodine, the initial TSH response is to increase. Most docs think that the iodine is causing hypothyroidism. However, another function of TSH (as I understand it) is to increase the quantity of sodium iodine symporters, which are needed by the thyroid to bring in the iodine. Hence, once iodine is plentiful the thyroid is trying to get more, therefore increasing TSH to get more iodine symporters. After the thyroid is "sated" then the TSH level will drop to normal levels. At least this is my understanding. As mentioned, I'm no expert.
Ken
Re: My journey so far
January 14, 2024 09:36AM
Back in the 60's, a pool that I trained in changed to iodine instead of chlorine for water purification. A few of my team members began having a number of strange physical issues, and after testing, their iodine levels were extremely high, resulting in their thyroids going crazy. The pool switched back to chlorine.

How much iodine is too much?
Re: My journey so far
January 14, 2024 12:54PM
Quote
Ken
How much iodine is too much?

Interesting question. I don't know about in the 60's, but today bromine/bromine is ubiquitous. It is used in bread, as a fire retardant in clothing, furniture and carpet and as a disinfectant in pools & hot tubs. My understanding is when someone starts taking iodine, the iodine will displace the bromine quickly and this can cause all kinds of symptoms from "bromism." Bromine as a gas was used in WWI and was very toxic. It is why two weeks of salt loading is suggested first, as it will displace the bromine slowly enough the body can deal with it.

The doctors who use iodine successfully in their practice test for iodine with a urine challenge test. Any iodine supplementation is stopped for 3 or 4 days, then they do a 24 hour urine collection. The first day they throw away their first urine of the morning and take a 50 mg iodine pill. Then they collect urine for the next 24 hours, stopping after the first morning urine the next day. The total volume of urine collected is recorded and a mixed sample is sent in for analysis. The analysis result will be the percentage of the 50 mg of iodine that was excreted. Around 90% is normal. Dr. Brownstein (who member Liz has used) said in his book on the topic that ~95% of patients tested low on their first test, many around 25-30%. Meaning the body was keeping 70-75% of the iodine ingested, an indication that body stores of iodine were low. None of the docs mention using a serum test for iodine. The test methodology, to me, indicates that the body will excrete what it doesn't need. Hence I would bet that bromine toxicity was the likely reason for the symptoms your team members experienced.
Re: My journey so far
January 15, 2024 06:14PM
yep, I'm in Melb/Oz. This is a lot to take in, so it will be a while before I've processed it.

At the moment I'm doing very well just staying 'failsafe' (super low amines is the key I think, but maybe low salicylates help too, not such yet), so no immediate rush for me.

Finding a doctor to come on the journey is a real challenge though - my local GP almost had a heart attack when he got my cholesterol results: calculated LDL was 10.8 mmol/L (ref < 3.5). Turns out I'm a Lean Mass Hyper Responder (LMHR) - not something mainstream medicine is across. FYI, the Trig/HDL ratio is very good which a lot of research says is a better indicator of CVD risk, but the particle size distribution of LDL would be the next step to look at as the really small oxidised ones are a problem, not the big fluffy ones. But I'm getting off topic... I have not found any correlation between cholesterol and my Afib tendency as such - the LDL really just varies depending on how low carb I am.



Edited 1 time(s). Last edit at 01/15/2024 10:16PM by MattTheDuck.
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