The gut and autoimmunity.

Information about how to manage or reduce the severity of BFS symptoms

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Re: The gut and autoimmunity.

Postby G-Dog on January 6th, 2013, 6:24 am

This theory still falls woefully short of explaining BFS in my opinion. I'm sure you will find plenty of people here who don't experience IBS/gut related problems (myself included). I've read more posts on this forum than I care to remember and the only consistent pattern I can find is anxiety and compulsive behaviour.
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Re: The gut and autoimmunity.

Postby seventhcandle on January 7th, 2013, 3:22 am

BFSBurger wrote:Maybe not quackery entirely. Celiac disease is considered autoimmune. The immune system attacks the small intestine absorption structures when foods containing Gluten are ingested. So here is an example of autoimmunity triggered by a certain type of food intake. Temporary autoimmunity. Though if you repeat, repeat, repeat, you can cause ongoing issues with inability to absorb nutrients which can cause nerve damage, etc. There's some truth / much truth to the food intake and immune / nervous system world. Strong ties. Just a little blurry as of yet.


I agree Kevin. I have very, very elevated Lipase and ALT levels, just discovered by my gastroenterologist. This was just found, so right now we don't know what is going on, but it could be pancreatitis, IBD, or possibly a consequence of gluten intolerance.

I just found out you can have Celiac Disease and not even know it. The GI doc has not ruled this out in me yet. Time will tell. In the meantime, more and more testing to come...
Been on the BFS journey since 6/26/12...

Twitch way do I go from here?

BFS does get better with time. Almost two years in and able to do almost everything I could do before I had this condition. Still twitching away of course...
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Re: The gut and autoimmunity.

Postby SecretAgentMan on January 7th, 2013, 10:24 am

I love it when people jump to the quakery conclusion just because something does not fit into their construct of how they believe the world works. None of us have the whole picture and that includes the doctors we put our faith in. If it is one thing that history teaches us it is that we are constantly revising things that we thought were facts at one time. There is indeed a growing movement in certain sectors of the medical community that is noticing the correlations between digestive health and auto-immunity and they are studying it. Here is a link to a neurological discussion board with links to scientific papers written by doctors studying the link between gluten intollerance, celiac disease, and auto-immunity.

The mind is like a parachutte. It does not work unless it is open.

http://neurotalk.psychcentral.com/showthread.php?t=1872
If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.
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Re: The gut and autoimmunity.

Postby G-Dog on January 7th, 2013, 3:12 pm

OK feel free to waste away your lives trying to cobble together an answer, jumping from one wild theory to the next. Bottom line is, BFS is not a life threatening disease...This is nothing to do with having an open mind, it's about being rational, it's about taking control of your life and accepting that BFS is nothing more than a minor inconvenience. Spend some time with your family, go for a walk, enjoy your life...life is fleeting, make the most of what you have! Instead you can choose to spend your days trawling Wikipedia, grasping at straws, trying to make something fit. Yes scientific research is never complete and is constantly being re-evaluated and revised...But it's a slow rigorous process and I'm damned as hell not gonna waste my time holding out for some magical elixir. It's galling in a way to know how people suffer in this world with a chain around their neck from the day they are born purely by virtue of which womb they happen to fall out of. While others with all the trappings of western comforts waste away their lives Googling their symptoms and obsessing about their twitches. Don't get me wrong this forum has greatly helped many people get a handle on BFS and I for one have benefited, but once you've been checked out and given the all clear, move on!
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Re: The gut and autoimmunity.

Postby aztwitchy on January 7th, 2013, 3:28 pm

G-Dog wrote:OK feel free to waste away your lives trying to cobble together an answer, jumping from one wild theory to the next. Bottom line is, BFS is not a life threatening disease...This is nothing to do with having an open mind, it's about being rational, it's about taking control of your life and accepting that BFS is nothing more than a minor inconvenience. Spend some time with your family, go for a walk, enjoy your life...life is fleeting, make the most of what you have! Instead you can choose to spend your days trawling Wikipedia, grasping at straws, trying to make something fit. Yes scientific research is never complete and is constantly being re-evaluated and revised...But it's a slow rigorous process and I'm damned as hell not gonna waste my time holding out for some magical elixir. It's galling in a way to know how people suffer in this world with a chain around their neck from the day they are born purely by virtue of which womb they happen to fall out of. While others with all the trappings of western comforts waste away their lives Googling their symptoms and obsessing about their twitches. Don't get me wrong this forum has greatly helped many people get a handle on BFS and I for one have benefited, but once you've been checked out and given the all clear, move on!


wow....so I don't necessarily disagree with some of what you are saying I do think your delivery of your message sucks...yeah maybe people with minor twitching in their leg or arm should ignore it and move on but there a large number of folks whose "BFS" is more than a minor inconvenience. These people including myself aren't looking for magical elixirs but coping mechanisms and lifestyle changes that would allow them to go "enjoy" a walk with their family let alone their life. while I am sure some people on this site have twitching due to psychosomatic causes there are a number of us I am sure who it is something purely physiological resulting in psychiatric symptoms as well. And for those of us suffering a REAL disease things like diet can make a huge difference. I'm glad you benefited from the forum and are able to move on...if your messages are going to continue in their current form My 2 cents is you should do just that...
"Health is a state of complete physical, mental and social well-being, and not merely the absence of disease or infirmity." ~World Health Organization, 1948
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Re: The gut and autoimmunity.

Postby SecretAgentMan on January 7th, 2013, 4:20 pm

aztwitchy wrote:
G-Dog wrote:OK feel free to waste away your lives trying to cobble together an answer, jumping from one wild theory to the next. Bottom line is, BFS is not a life threatening disease...This is nothing to do with having an open mind, it's about being rational, it's about taking control of your life and accepting that BFS is nothing more than a minor inconvenience. Spend some time with your family, go for a walk, enjoy your life...life is fleeting, make the most of what you have! Instead you can choose to spend your days trawling Wikipedia, grasping at straws, trying to make something fit. Yes scientific research is never complete and is constantly being re-evaluated and revised...But it's a slow rigorous process and I'm damned as hell not gonna waste my time holding out for some magical elixir. It's galling in a way to know how people suffer in this world with a chain around their neck from the day they are born purely by virtue of which womb they happen to fall out of. While others with all the trappings of western comforts waste away their lives Googling their symptoms and obsessing about their twitches. Don't get me wrong this forum has greatly helped many people get a handle on BFS and I for one have benefited, but once you've been checked out and given the all clear, move on!


wow....so I don't necessarily disagree with some of what you are saying I do think your delivery of your message sucks...yeah maybe people with minor twitching in their leg or arm should ignore it and move on but there a large number of folks whose "BFS" is more than a minor inconvenience. These people including myself aren't looking for magical elixirs but coping mechanisms and lifestyle changes that would allow them to go "enjoy" a walk with their family let alone their life. while I am sure some people on this site have twitching due to psychosomatic causes there are a number of us I am sure who it is something purely physiological resulting in psychiatric symptoms as well. And for those of us suffering a REAL disease things like diet can make a huge difference. I'm glad you benefited from the forum and are able to move on...if your messages are going to continue in their current form My 2 cents is you should do just that...


BFS is not life threatening, but it is a disease. It is not normal to have the symptoms that add up to a BFS diagnosis. These symptoms do have a cause and what I have personally found (as I am one of the few cured, yes cured, ones) is that digestive health was directly related. I found alternative medicine doctors who were familiar with my condition and helped me treat it and recover from it. The twitching, buzzing, anxiety, panic attacks, and other annoying symptoms all went away.

It wasn’t a magic elixir. It was a multi-faceted approach that was required because I had multiple areas of my lifestyle that needed to be addressed in order for positive sustaining changes to be made. I never would have gotten better had I not had an open mind to concepts such as this thread is discussing (particularly this subject because it’s a major factor).
If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.
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Re: The gut and autoimmunity.

Postby Kamila on January 7th, 2013, 4:38 pm

Hi
few days ago i put link also about Mercola where he said people get ALS and MS because of endodontic.
Now he blame food cases? Is this the same Mercola?
This is link to my post viewtopic.php?f=3&t=18591
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Re: The gut and autoimmunity.

Postby SecretAgentMan on January 7th, 2013, 5:25 pm

Kamila wrote:Hi
few days ago i put link also about Mercola where he said people get ALS and MS because of endodontic.
Now he blame food cases? Is this the same Mercola?
This is link to my post viewtopic.php?f=3&t=18591


If asbestos has been linked to cancer, does that mean that cigarette smoke cannot be? No, it just means that diseases can have multiple causes or at least contributing factors. If endodontic has been linked to neurological disorders that does not mean that neurological disorders cannot be brought about through other contributing factors as well.
If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.
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Re: The gut and autoimmunity.

Postby G-Dog on January 7th, 2013, 5:27 pm

I'm not saying for one second that diet isn't important. I have experienced the full wrath of BFS, you name it, I've had every symptom going! It has been two years since it all started for me and it's taken a great deal of self determination to get through this. I rarely ever twitch now, maybe a few times a day, it's still there to some small degree...but it's meaningless to me. When this whole thing kicked off I would focus my mind on every minute feeling...I convinced myself that I was developing MS, ALS, a brain tumor..one grim diagnosis to the next. So believe me if I come across as being flippant it's not through a lack of personal experience.

BFS is almost certainly a subset of anxiety/depression, I'm not sure if it's really worthy of it's own title. Most people with "BFS" will attest to experiencing a whole range of other symptoms...parasthesia, buzzing, crawling sensations, cramps, rubbery leg syndrome, whatever you want to call it. If you want to know how far reaching anxiety actually is just refer to this list here:

http://www.anxietycentre.com/anxiety-symptoms.shtml

I've tried all the supplements and vitamins going and none of them work...if anything they will lead you to more dissapointment, or worse they could actually harm you. All you need to do is stick to a balanced diet, get regular exercise and chill out...it sounds cliche but it's true! Get a grip on the anxiety and everything else will right itself over time.

Most neuroligists will dispatch with people like us pretty swiftly! They'll move on to the people who are suffering real dibilitating neurological diseases...and rightly so! If you continue to pursue this, you risk falling into the hands of quacks and snake oil merchants...they'll always be around to take your money and sell you a promise.

I know it's not easy to accept that anxiety is at the root of this, it seems to abstract. Being in a chronic state of anxiousness has a cumulative effect on your nervous system. So you won't solve this overnight but you will eventually but only by getting to grips with your anxiety.
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Re: The gut and autoimmunity.

Postby seventhcandle on January 7th, 2013, 8:03 pm

aztwitchy wrote:
G-Dog wrote:OK feel free to waste away your lives trying to cobble together an answer, jumping from one wild theory to the next. Bottom line is, BFS is not a life threatening disease...This is nothing to do with having an open mind, it's about being rational, it's about taking control of your life and accepting that BFS is nothing more than a minor inconvenience. Spend some time with your family, go for a walk, enjoy your life...life is fleeting, make the most of what you have! Instead you can choose to spend your days trawling Wikipedia, grasping at straws, trying to make something fit. Yes scientific research is never complete and is constantly being re-evaluated and revised...But it's a slow rigorous process and I'm damned as hell not gonna waste my time holding out for some magical elixir. It's galling in a way to know how people suffer in this world with a chain around their neck from the day they are born purely by virtue of which womb they happen to fall out of. While others with all the trappings of western comforts waste away their lives Googling their symptoms and obsessing about their twitches. Don't get me wrong this forum has greatly helped many people get a handle on BFS and I for one have benefited, but once you've been checked out and given the all clear, move on!


wow....so I don't necessarily disagree with some of what you are saying I do think your delivery of your message sucks...yeah maybe people with minor twitching in their leg or arm should ignore it and move on but there a large number of folks whose "BFS" is more than a minor inconvenience. These people including myself aren't looking for magical elixirs but coping mechanisms and lifestyle changes that would allow them to go "enjoy" a walk with their family let alone their life. while I am sure some people on this site have twitching due to psychosomatic causes there are a number of us I am sure who it is something purely physiological resulting in psychiatric symptoms as well. And for those of us suffering a REAL disease things like diet can make a huge difference. I'm glad you benefited from the forum and are able to move on...if your messages are going to continue in their current form My 2 cents is you should do just that...


Couldn't agree more with you, aztwitchy. I do believe there are some cases of BFS that are purely anxiety/stress-driven, but also plenty of cases that are not. I'm not saying that stress and anxiety do not play a role in worsening symptoms, but there are those of us who suffer from horrible reactions to meds (myself included) that brought on BFS right away. Because of this disorder, I cannot eat most foods, cannot be around bright lights for too long, and suffer from very hard-hitting spasm-like twitches all over that just keep spreading and getting more and more frequent. My BFS is directly linked to my diet. If I eat the wrong food, I will get triggered with a permanent increase in symptoms. I also have muscle jerking at night and severe gastro issues that are being investigated right now. So we cannot chalk up everyone's BFS to anxiety and stress. There are cases of people who still have debilitating symptoms 10 to 20 years out. I think that muscle fasciculations caused by other factors are the ones that seem to stick around the longest perhaps because of autoimmune antibodies that cause channelopathies. We cannot all be clumped into one group here.
Been on the BFS journey since 6/26/12...

Twitch way do I go from here?

BFS does get better with time. Almost two years in and able to do almost everything I could do before I had this condition. Still twitching away of course...
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Re: The gut and autoimmunity.

Postby SecretAgentMan on January 7th, 2013, 10:51 pm

G-Dog wrote:I'm not saying for one second that diet isn't important. I have experienced the full wrath of BFS, you name it, I've had every symptom going! It has been two years since it all started for me and it's taken a great deal of self determination to get through this. I rarely ever twitch now, maybe a few times a day, it's still there to some small degree...but it's meaningless to me. When this whole thing kicked off I would focus my mind on every minute feeling...I convinced myself that I was developing MS, ALS, a brain tumor..one grim diagnosis to the next. So believe me if I come across as being flippant it's not through a lack of personal experience.

BFS is almost certainly a subset of anxiety/depression, I'm not sure if it's really worthy of it's own title. Most people with "BFS" will attest to experiencing a whole range of other symptoms...parasthesia, buzzing, crawling sensations, cramps, rubbery leg syndrome, whatever you want to call it. If you want to know how far reaching anxiety actually is just refer to this list here:

http://www.anxietycentre.com/anxiety-symptoms.shtml

I've tried all the supplements and vitamins going and none of them work...if anything they will lead you to more dissapointment, or worse they could actually harm you. All you need to do is stick to a balanced diet, get regular exercise and chill out...it sounds cliche but it's true! Get a grip on the anxiety and everything else will right itself over time.

Most neuroligists will dispatch with people like us pretty swiftly! They'll move on to the people who are suffering real dibilitating neurological diseases...and rightly so! If you continue to pursue this, you risk falling into the hands of quacks and snake oil merchants...they'll always be around to take your money and sell you a promise.

I know it's not easy to accept that anxiety is at the root of this, it seems to abstract. Being in a chronic state of anxiousness has a cumulative effect on your nervous system. So you won't solve this overnight but you will eventually but only by getting to grips with your anxiety.


You and I are in about 95% agreement here. I agree with you that stress is the key, but I don't just limit my definition of stress to the emotional. Toxins and allergens in our food and environments stress our bodies, just as your emotions can stress your body. Because we are all different some of us respond better to changes in diet than others. Some of us respond better to changes in emotional stress than others. It all depends on what the source of your body's priority stress is. We as human beings are complexes of mind, body, and spirit. And no one of these is independent from the rest. A recovery for me required changes to all three aspects. Emotional stress and diet are the cornerstones to feeling better, but they are not the only things. This is why I always stress that my recovery was multi-faceted. Good discussion here though.
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Re: The gut and autoimmunity.

Postby BFSBurger on January 8th, 2013, 1:01 am

It's interesting how people view things. When there is a lack of understanding about how the body works, people tend to summarize and generalize with statements like "Just chill and relax! Forget all that "natural" nonsense". Secret agent man has it correct. It's incorrect to say that supplements don't help. There are supplements that arent just vitamins out there. There are things proven to do many things in Published studies. And as I have said many times before, people always claim that they tried this or that, and it didn't work. Well how long did you try it? Did you research the proper dose? There are So many factors in whether something will help. The most significant being how long did you use it?

When you start to research this condition, and all the brother and sister conditions out there, you start to understand the causes of them. There are deficiencies, there are malfunctions, there are pathogens involved. That's a proven fact. There are supplements and steps people can take, which will correct those deficiencies, Treat the symptoms of the malfunctions, and reverse much of the damage that has been done which is playing a role. I know the mentality out there of the average Joe, who laughs and scoffs at the whole natural solution, holistic thing. I was one of them. But when you actually educate yourself in the science of it all, you start to realize that it's not just baloney. The nutrients and biological necessities found In things like CoQ10, PQQ, Carnitine, and organic vegetables, are astounding. I can't even count the number of published clinical trials and studies done on broccoli and cancer tumors. There are a ton. That's just one example of 1 million.
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: The gut and autoimmunity.

Postby G-Dog on January 8th, 2013, 6:49 am

There are supplements that arent just vitamins out there. There are things proven to do many things in Published studies.


Anybody can publish a study, often based on little more than anecdotal evidence. But this is not the way science is conducted, or at least it's far from the full picture. A published study must be subjected to peer review. It must be scrutinised by the wider scientific community and shown to stand up again and again.Testing in humans must be based on established methods, e.g. double blind randomised controlled trials. I wouldn't hold these studies in such high esteem until you know more about the methods and the level of scrutiny to which they have been subjected. In the words of Carl Sagan "Extraordinary claims require extraordinary evidence".

When you start to research this condition, and all the brother and sister conditions out there, you start to understand the causes of them.


So what are the brother and sister conditions for BFS? I'd be interested to know how you arrived at this?

The nutrients and biological necessities found In things like CoQ10, PQQ, Carnitine, and organic vegetables, are astounding


Off course, so eat more vegetables! You don't need to take these in supplement form in high multiples of the recommended daily allowance. As I said previously, you may well do more harm than good.
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Re: The gut and autoimmunity.

Postby stephane28 on January 8th, 2013, 7:28 am

I also have some GERD problems for 2-3 years now (my BFS started 8 months ago). I never thought there could be a link with BFS. I used to take some inexium in the past and now only take Gaviscon (same as prosilec) when heartburn during the night.
Are we a lot on this board to have GERD problems or is it just a typical anxiety symptom (nevertheless I was really not anxious before BFS started)
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Re: The gut and autoimmunity.

Postby christo on January 8th, 2013, 7:55 am

Same as stephane28, about 3 years with GERD and took both IPP (Ogastoro) and Gaviscon. I know that GERD is quite frequent but this is a strange coincidence.
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Re: The gut and autoimmunity.

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