How I Cured my BFS (Benign Fasciculation Synd) within 1 Year

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Re: Update

Postby BFSBurger on June 9th, 2013, 4:00 pm

chrissi wrote:It is also not even important to discuss different views on the possible origins of BFS , as long as people understand it is benign.

Totally disagree. Why did Mayo run a full Paraneoplastic panel for Greg? Because they don't know what they're doing? Do we all here believe Mayo is clueless?

Why does the foremost expert on Neuromyotonia calling BFS "probably neuromyotonia" ? Do we know better than Dr. Angela Vincent on the issue of Neuromyotonia?

I don't know that what I have is a form of Neuromyotonia. Shoot - bee stings can cause Neuromyotonia. For all I know, my symptoms could be a result of this active Cytomegalovirus and Coxsackie virus going on inside me. But there are benefits to researching the causes. And dropping ALS in the trash where it belongs.

Checking for Paraneoplastic issues is just preventative. If you're worried that I will give people anxiety, don't be. Allowing them to live in terror of ALS on this forum day and night causes far worse anxiety than saying "You don't have anything wrong, but make sure you take steps to monitor for possible future issues". I guess we want all or nothing. Deadly or "Benign". Its either ALS or its "Nothing" ? Silly ... silly thinking.

There are other far more common reasons (than Paraneoplastic worries) worth discussing the origins of BFS.

We could be dealing with autoimmunity. In such a case, it would be extremely important to reduce your "triggers" because ongoing "triggers" can cause simmering autoimmunity to become full-blown autoimmunity. Autoimmunity caught early can prevent Autoimmune disease. This is a fact. And yet another reason why its important to brainstorm the origins and take preventive steps.

Another reason: Many people here have very severe BFS. How do they know they don't have diagnosable Neuromyotonia? If everyone here tells them "dont bother running the tests" they will never know. There are both good and bad ramifications to that. If he ran the test, and it came back positive, then he could benefit from treatments, like Prednisone. Or others. There are cases where Prednisone *cured* NMT. Botox injections as well. In a larger percent of cases, treatments reduced symptoms and improved quality of life significantly.

So instead of that, we should tell the person not to check? That doesn't make sense to me.

This is a medical condition. Something is causing it. The statement "Dont bother finding out what it is, just know that its benign".... is an impossible statement to make. If you don't know what it is, you can't claim its benign. Im not saying its ALS. Im not saying its deadly at all. I am saying there are some serious benefits associated with knowing the cause. Both treatment and prevention-wise.

Let me put it this way:

We are wasting time and money chasing after ALS. Discussing ALS here. Fearing ALS. We don't even have the proper *symptoms* to be discussing ALS. That's why our Neurologists don't even bring it up, and laugh at us when we do. But try bringing up Neuromyotonia to them, and you will get a significantly different, interested and curious response. Our symptoms are a carbon copy of NMT clinical manifestations, just on a less intense scale. Try reading the Neuromyotonia Wikipedia page sometime. Tell me its not like looking in the mirror. There should be entire forums here discussing happy, proactive ways that we are all getting NMT ruled out, not ALS. Entire forums discussing methods for monitoring for complications, and finally relaxing. Yet instead its discussion about something none of us could possibly have.

Paraneoplastic monitoring and prevention can stop possible surprises and save lives. Might it cause anxiety here? Sure. But is it really any LESS anxiety than the ALS jibber jabber? It would be about a thousand times more subdued because NMT is not deadly ... and neither do its complications have to be, if they're being monitored for. So the solution is to let everyone worry they have ALS and then blame them for their own BFS.

I guess I am seeing now that several folks here want the "All or Nothing" viewpoint.

If its not ALS, its no different than an itch. If its not deadly, then it has to be absolutely nothing. There is no possible shade of gray (NMT / slight autoimmunity / channelopathy / minor demyelination / etc). Its either ALS and you're dead in 2 years, or its "Relax because you just have anxiety".

Disagree.
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: Update

Postby BFSBurger on June 10th, 2013, 1:56 pm

I guess this is what I'm trying to say, in summary:

If youre going to get medical tests to rule something out, focus on something more likely like Potassium Channel Disorders, or even generalized low-grade Autoimmunity. Rather than wasting time on ALS fears, it would make much more sense if everyone here got a VGKC Antibody test, and sought out neurologists familiar with potassium channel dysfunctions.

This isn't about scaring people about cancer. This is about properly identifying symptoms, and getting the work up that best applies to our situation. The advanced medical teams like Mayo Clinic run the VGKC Antibody test and a full paraneoplastic workup on BFSers. That's where we should be focusing our time and efforts. At least for those who do wish to be thorough.

That's all I am saying.

-B-
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Re: Update

Postby RGB on June 10th, 2013, 2:14 pm

BFSBurger wrote:I guess this is what I'm trying to say, in summary:

If youre going to get medical tests to rule something out, focus on something more likely like Potassium Channel Disorders, or even generalized low-grade Autoimmunity. Rather than wasting time on ALS fears, it would make much more sense if everyone here got a VGKC Antibody test, and sought out neurologists familiar with potassium channel dysfunctions.

This isn't about scaring people about cancer. This is about properly identifying symptoms, and getting the work up that best applies to our situation. The advanced medical teams like Mayo Clinic run the VGKC Antibody test and a full paraneoplastic workup on BFSers.



I'm late to this party, but a summary is a good place to walk in! A couple of points...

1. The paraneoplastic possibility is thankfully rare and even that is in quite specific presentations. Lower back pain is one presentation of prostate cancer but it makes no sense to test everyone (especially women!) for PSA who has back pain. Likewise it seems to me (as an amateur, as we all are) that cancer is only a realistic concern if the bigger picture adds to the probability of that scenario (smoker, persistent cough, etc.) and/or you have the time/money/resources to investigate low probability events.

2. In a perfect world then the kind of investigations you suggest are perfectly sensible. However, the world isn't perfect and, personally, I would rather save this kind of rigour for something that is more dangerous, better understood, more treatable etc.

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My history....Jan '13: Widespread Twitches. May 13': Unremarkable Neuro Exam. Jul '13: Clean EMG. Oct '13: BFS Diagnosis Today's Date: Twitching and Healthy!
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Re: Update

Postby udflfbajb on June 11th, 2013, 8:37 am

I'm fairly new here (and about 6-7 months into my BFS life), and I only occasionally read messages in this forum. I think it's very valuable to read what experiences people have been through, and what kind of things help or aggravate their symptoms. BFSBurger's post is very interesting in that regard. My impression is, however, that people on this forum react against the way some of these messages are being delivered, and not so much the facts and theories contained in them. I gather that people have tried to convey just that, with relatively little success.

BFS is name given to a cluster of symptoms appearing on the peripheral nerve hyperexcitability scale. So is neuromyotonia. The latter term is typically used when the symptoms are more severe. So yes, BFS is a kind of neuromyotonia. I see no need to argue about that, and I'm not under the impression that people on this forum strongly oppose to that classification. But this changes nothing. What we know about BFS doesn't seem to differ from what we know about neuromyotonia: It's probably an autoimmune disease, possibly attacking the potassium channels. Whether we call it this or that is a name game.

So yes, neuromyotonia may be paraneoplastic, but it's rare. The thing is, cancer is such a diverse group of diseases that virtually any symptom could be a symptom of cancer. Cancer is, however, usually asymptomatic at first. Worrying about BFS being caused by cancer is about as useful as worrying about toothache being cancer. Doctors can't do full body scans on patients with any symptom that could be cancer. BFS falls into that category.

The reason why many newbies on this forum fear ALS is not because they want to fear it, it's because the characteristic symptoms of BFS are also characteristic symptoms of ALS (fasciculations, muscle cramps, (perceived) muscle weakness). Given the number of people with BFS who fear ALS, it's indeed very useful for people on this forum to inform them about why they do not have ALS. It is not a waste of time. And neurologists don't (or shouldn't) laugh at us if we worry about it. I didn't even remotely consider ALS when I was referred to a neurologist. My presenting symptom was sudden onset of paresthesia, so my (and my doctor's) concern was multiple sclerosis or Guillain-Barré. By the time I got to see two neurologists and had started developing fasciculations and perceived muscle weakness, they were the ones who did all the typical tests for ALS. It's not stupid. ALS should always be ruled out first when coming up with BFS symptoms.

Finally, as people have pointed out, please keep in mind that BFS is multifaceted. The patient demographics is all over the place, our symptoms are, and our histories are. Sure, if you're a 70 year-old heavy smoker who develops neuromyotonia, speculating about lung cancer is not far-fetched. But if you, like me, are a young healthy man with no cancer in the family and you developed BFS immediately after a serious viral infection, then the likelihood that your BFS is caused by cancer is zilch.
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Re: Update

Postby Aingealag on July 4th, 2013, 3:42 am

I'm doing a 30-day Paleo challenge atm and I'm 2 weeks in. Until about 3 days ago I felt great, although eating out was quite difficult and had a few cheat moments, both the intentional and unintentional, where I looked at a food label afterwards and discovered a non-Paleo food item like soy. But for the past few days I've been so grumpy, miserable and have crazy sweet cravings and bacne like never before in my life. I was hoping to get rid of my hormonal acne (chin and back), but it only seems worse. Since a few days I'm also getting my somewhat chronic tonsillitis back, which had been gone for almost 2 months.

I'm hoping this is some kind of delayed detox, but I really thought I would feel better 2 weeks of 90% Paleo. For those who have tried this; when did you start feeling better?

Cheers,

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Re: Update

Postby BFSBurger on July 4th, 2013, 9:39 am

Aingealag wrote:I'm doing a 30-day Paleo challenge atm and I'm 2 weeks in. Until about 3 days ago I felt great, although eating out was quite difficult and had a few cheat moments, both the intentional and unintentional, where I looked at a food label afterwards and discovered a non-Paleo food item like soy. But for the past few days I've been so grumpy, miserable and have crazy sweet cravings and bacne like never before in my life. I was hoping to get rid of my hormonal acne (chin and back), but it only seems worse. Since a few days I'm also getting my somewhat chronic tonsillitis back, which had been gone for almost 2 months.

I'm hoping this is some kind of delayed detox, but I really thought I would feel better 2 weeks of 90% Paleo. For those who have tried this; when did you start feeling better?

Cheers,

Wendy

Try to avoid all soy. Gluten. Wheat. MSG. Aspartame. These are the nasties for sure.

I really, really cannot tolerate Paleo without my mashed potatoes. I start to feel like hell too. The potatoes provide energy and carbs that are still "okay" with paleo.

When you eat out, simply get chicken and mashed potatoes and veggies.

I can't imagine you would feel terrible after that. If you have cut sugar out, you should expect to feel like crap for awhile. As well as caffeine. Its probably one of the hardest things to do. But Paleo alone was insufficient for me because it did not provide enough energy and carbs. I went to Whole Foods, and filled a bag full of organic potatoes. I bring them home, peel them, and make mashed potatoes every day with my meal. In the absence of sugars and breads, I don't get fat from the potatoes. And I have great energy after eating. Sugar withdrawal is hell. You can google that phrase and see that its very normal. Potatoes are high glycemic so they should provide some reprieve from the sugar withdrawals on some level. If you are exercising its okay to have gatorade. You must replenish sugars after exertion. Although an apple is the best form for that, gatorade I think is really helpful for us with this syndrome. I wouldn't drink it all day anymore though if you're trying to avoid unnecessary sugars.
How I resolved my BFS within 1 year of onset:

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Re: Update

Postby SecretAgentMan on July 4th, 2013, 10:26 am

Everyone has different trigger foods so listen to your body. The foods BFSB described are some very highly likely trigger foods (and aspartame is just plain toxic), but there may be more. Although potatoes are a good source of carbs, they are also a nightshade. Nightshade variety vegetables are unfortunately also potentially inflammatory foods, so don't ignore them or automatically assume they are OK for you to eat too. Nightshades have a tendency to be a problem food, as they were for me in the beginning as well. They are OK for me to eat now, but you need to eliminate the inflammation in order to heal first.
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Re: Update

Postby BFSBurger on July 4th, 2013, 11:41 am

Right this is true. I thrive on potatoes. Others may not.

NOTHING is black and white with BFS ..... and almost nobody has the same symptoms ... and we all likely have varied *causes* too.

BFS is not one specific thing, and handling it isn't done only one specific way.
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Re: Update

Postby muppetdog on July 4th, 2013, 12:18 pm

Wendy -

I also have been eating Paleo style to try to get some reliefs from my symptoms. I know from past experience that these low carb diets can make you feel like crap. They call it the Low Carb Flu and it is not fun. I battled through it back in the day when I went on the South Beach Phase 1. You can get: fatigue, headaches, irritability (like everyone makes you want to snap), your mind gets tired, and you just feel like crap. You basically turn into a Zombie - at least I did. You literally will have Brad Pitt chasing you around with a shotgun. I got down to about 7% body fat on that one, but never again. You also lose a ton of water weight and, at least for me, a lot of salt and other electrolytes.

Your body starts to go into ketosis (where it makes ketone from fat) instead of running off of carbs. I personal can't handle it. I guess some can. I think, even Robb Wolf in his book "The Paleo Solution" says some people can't handle it and need to eat more carbs.

Give the Mashed potato thing a try, like Burger said. But like SAM said, it is a nightshade and that can be inflammatory, from what I have read. I personally go for grapes and bananas and if I am really craving sugar, like about to go on a cupcake bender, I eat a bunch of raisins. This may or may not work for you. Oh, also, sweet potatoes. Those are not related to potatoes and not in the nightshade family so you can give them a try.
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Re: Update

Postby SecretAgentMan on July 4th, 2013, 2:45 pm

OK, so I am going to throw this out there for open minded individuals to try. It can be a little overwhelming when you start to look into the foods you are eating and trying to find your trigger foods. I know I was overwhelmed. I was exposed early on however to applied kinesiology which turned out to be of great value in determining which foods were good for me and which foods were not. Newcomers to the concept can easily look at applied kinesiology and comfortably jump to the conclusion that it is quackery but please bear with me and keep an open mind. Remember that having an open mind does not mean that you have to believe everything you see, hear, or read. It simply means that you never discount a possibility no matter how much you disagree with it. After all, nobody knows everything about everything.

First a little background. Applied kinesiology is based on the concept that you have an energy field surrounding your body, which is interfaced with your body through your central nervous system. The Chinese call this energy Chi, but you can call it whatever you like. This energy flows through your body in multiple complex pathways mapped out by the acupuncture system. Although this energy is invisible the acupuncture system was developed and utilized based on people being able to feel it. Only now, thousands of years later, do we have modern electronic methods of detecting acupuncture points. The electronic measurement of these points throughout the body maps perfectly back to the acupuncture diagrams that have been around for thousands of years. Please consider this interesting correlation if you still doubt the realness of this energy.

So, considering the potential existence of this energy field, what implications does this have and how does it tie in to foods and diet? Well, the energy field is very much a part of us and it extends outward into our immediate environment. When you hold a food item that is inflammatory, toxic, or allergic for you the energy field around you recognizes this. Because your energy field interfaces through your nervous system it sends subtle signals that your nervous system responds to. Many practitioners of applied kinesiology utilize a technique called muscle response testing as one method of reading the energy in response to a substance. An unhealthy substance will cause your muscle strength to go slightly weaker. A healthy food substance will allow you to remain strong. Practitioners usually have you hold an arm out while they gently push down and have you resist. I was amazed when despite my best efforts some substances would cause me to go slightly weaker than others.

Muscle response testing is not the only way to measure the response of your energy system though. There are multiple tells. If anyone is familiar with a polygraph (lie detector test) there are multiple physiological responses they look for to indicate a binary yes or no response. Despite the conscious mind's best efforts to lie, the energy system attempts to respond truthfully. The pupils in the eyes and the pours on your skin will contract or dilate. Conductivity rates of the skin will change. Vibration rates of the nervous system itself and your muscles will slightly change (phenomenon that makes pendulum dowsing possible). There are multiple things to look for.

Alternative medicine practitioners learned quite some time ago that the subtle energy system of the body responded intelligently to more than just things that the conscious mind was aware of. It seemed to respond to things the unconscious part of the mind was aware of too. This is the part of the mind that knows what foods trigger an immune response, if you have a virus or bacteria invader, or how to manage any number of health issues that are going on behind the scenes. A skilled practitioner can use this skill to get to the true root cause for a multitude of chronic health issues where modern medicine doctors can only guess based on learned experience from a history of cases. Unfortunately their *beep* usually results in prescribing some drug that more often than not just masks and in some cases even adds to the burden the body already has.

Applied kinesiology is not without its challenges. When you ask a question you will always get a yes or no answer. Unfortunately there is a common issue, especially in our world today, called cross-talk. Cross-talk occurs when the energy system of the body cannot communicate clearly with the nervous system. Cross-talk is still little understood by the wider community utilizing applied kinesiology and is a source of error in many of the case studies that claim to debunk applied kinesiology. A skilled practitioner who knows how to look out for cross-talk and eliminate the causes can utilize applied kinesiology for incredibly high accuracy rates. For the beginner or untrained it can be a great source of frustration. Some common and easily eliminated sources of cross-talk are as follows:

1. Remove all cell phones, electronic devices, metal (keys, change), jewlrey (especially crystals, stones, or glass) from your person.
2. Keep hands and legs uncrossed
3. Maintain a good posture with your head straight
4. Stay well hydrated
5. Don't sit or stand too close to a source of electromagnetic energy

And now finally how to put all of this to use... There will be a learning curve, especially at first since your energy system is completely used to being ignored. At first you may want to start out using a pendulum. All you really need is a weight on a chain, like a necklace. You can hold the pendulum by the chain in one hand and a food item in the other. Hold the pendulum directly over the food item and ask internally if this food is healthy for you to consume. Try to hold the pendulum as still as you consciously can. The subtle vibrations of your nervous system should resonate in a frequency that will cause the pendulum to swing. Generally if it swings to and fro towards you then away from you this would indicate a 'yes' response. Likewise a swing from side to side will indicate a 'no' response. You will likely have difficulty getting a response at first. Just keep asking the question and if nothing happens ask for a stronger response. The more you practice the stronger the responses will get. This technique is usually called dowsing or divining, but it is very much the same principle behind the scenes that allows practitioners to feel a weak muscle or a strong muscle response. It is your energy interfaced through your nervous system giving a subtle tell in response to a yes or no question.

Eventually when you get more practiced you can learn to recognize the feeling of the energy without the need for an external instrument to magnify the response. That is essentially what a pendulum does. It magnifies the subtle frequency your hand and muscles are vibrating at causing an exaggerated motion through a weight at the end of a chain. When you learn to feel the response of the energy, much as the Chinese learned to feel the energy in the acupuncture points, you will not need anything but yourself to determine if a food is good for you or not. How you choose to relate to your energy is up to you. Some people learn to simply play 'red light, green light' in their heads to get yes or no responses. It can be quite fun.

So, that all being said, I know this is a foreign concept to most people here. Some will write this off immediately while others might humor the concept or be intrigued. I am thankful that I humored it back when I was first exposed to it because it is part of what lead me down the path I am on now. I would not be in the great state of health that I am in today if not for practitioners who where very skilled and trained in techniques that utilize this relationship we have with our energy. If you seriously pursue this you will get validation that there is more to this than just chance, but you will make mistakes along the way. Just do your best to learn from them and move on. It is my hope that at least some of you can utilize this to help you to find the foods that you should or should not be eating. Thank you for reading.
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Re: Update

Postby LaurentCH on July 8th, 2013, 8:56 am

i regard myself as cured and 98 % fascicsfree for a year now. my concept is based on exact the same three points. just had a separation, was bad and no sleep, the fascics did not come back.
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Re: Update

Postby Aingealag on July 16th, 2013, 4:07 am

I'm almost done with my 30-day Paleo challenge now and I've decided to keep at least all glutinous grains out of my life and at least 80% of all other grains. I might introduce a bit of organic Greek yoghurt back into my diet, but milk and cheese stay out, as well as soy and processed foods.

The low-carb flu was brutal indeed, mostly for my mood. I wanted to snap at everyone, felt really depressed and had mad carb cravings. But that was over after week 2 and it's been pretty smooth sailing after that. I'm a convert!

I feel good, I sleep better and although I still get BFS symptoms and the occasional hormonal pimple, I'm convinced that if I give things a little more time, even that will improve. In any case, I've done enough research (plenty, trust me) to believe that this is an important investment in my future health... No matter how my friends ridicule me ;)

Also, I dropped a bit of weight that I had gained because of my thyroid issues (auto-immune, another reason to ditch the gluten!) and am now at my ideal weight again.

Thanks guys for the tips and for sharing your experiences. This BFS thing is a strange and fascinating journey :)

Cheers from a very rainy Perth,

Wendy
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Re: Update

Postby SecretAgentMan on July 16th, 2013, 8:40 am

Another success story! Thank you for sharing Wendy! :)

If you experienced flu like symptoms initially it was likely the die off of the excessive candida in your digestive system. It gets out of control with all of the sugar and grains in our diet that feed it. A probiotic supplement would be much more beneficial than yogurt to bring balance back to your system, but I'd wait until you've been off the sugar for a little while longer. Also, a supplement like Lauricitin or Interfase Plus will help you to eliminate the excess candida quicker. When you get the candida under control and repopulate your digestive system with pro-biotics your intestine lining will heal and you can try experimenting with adding some foods back in (in moderation of course). I never went back to my old diet of eating processed foods and junk, but I can now afford to not be so strict with my diet anymore because my digestive system is back in optimal shape. I just don't abuse it like I used to. I eat much more healthy and keep things in balance. Keep up the good work!
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Re: Update

Postby aztwitchy on July 16th, 2013, 11:12 am

Aingealag wrote:I'm almost done with my 30-day Paleo challenge now and I've decided to keep at least all glutinous grains out of my life and at least 80% of all other grains. I might introduce a bit of organic Greek yoghurt back into my diet, but milk and cheese stay out, as well as soy and processed foods.

The low-carb flu was brutal indeed, mostly for my mood. I wanted to snap at everyone, felt really depressed and had mad carb cravings. But that was over after week 2 and it's been pretty smooth sailing after that. I'm a convert!

I feel good, I sleep better and although I still get BFS symptoms and the occasional hormonal pimple, I'm convinced that if I give things a little more time, even that will improve. In any case, I've done enough research (plenty, trust me) to believe that this is an important investment in my future health... No matter how my friends ridicule me ;)

Also, I dropped a bit of weight that I had gained because of my thyroid issues (auto-immune, another reason to ditch the gluten!) and am now at my ideal weight again.

Thanks guys for the tips and for sharing your experiences. This BFS thing is a strange and fascinating journey :)

Cheers from a very rainy Perth,

Wendy


awesome...glad to hear the improvement. interesting you mention the pimple\acne....i have been getting that too and prior to bfs my skin was fine. Not sure if its related or coincidence. The diet isn't a cure but is one of the few things that actually takes symptoms from an 8 to a 3-4 for me.

Perth.....awesome. I want so badly to travel to Aus some day.
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Re: Update

Postby BFSBurger on July 16th, 2013, 6:47 pm

aztwitchy wrote:The diet isn't a cure but is one of the few things that actually takes symptoms from an 8 to a 3-4 for me.

Me too. Without a doubt. And it goes the opposite direction if I knowingly eat my trigger foods. When I stick to everything religiously, it takes symptoms from an 6 to a 1-2 for me. Glad others are seeing results too.

LaurentCH wrote:i regard myself as cured and 98 % fascicsfree for a year now. my concept is based on exact the same three points.


So glad this is helping you too. Isn't it crazy that we came to the same 3 major techniques completely independent of eachother? Even more evidence that there's something to it. :)

wendy wrote:I feel good, I sleep better and although I still get BFS symptoms I'm convinced that if I give things a little more time, even that will improve.


Happy to hear you're doing better. There's no doubt this is a huge influence on overall health, and will help calm BFS as well for most people.

sam wrote: I never went back to my old diet of eating processed foods and junk, but I can now afford to not be so strict with my diet anymore because my digestive system is back in optimal shape.


Great feeling isn't it? After several months of avoiding gut-damaging foods, the gut actually begins to heal, and you can have cheat meals without triggering any worse BFS symptoms. Even more evidence to me that this is an integral part of BFS recovery.

-Burger-
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: Update

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