BFS Cured by treating Intestinal Inflammation / Infection

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BFS Cured by treating Intestinal Inflammation / Infection

Postby BFSBurger on October 17th, 2013, 1:16 pm

I have been in correspondence the last 6 months with a girl who has BFS.
She contacted me because I had posted on one of those general med websites like MedHelp.com (I cant even remember which now).
She sent me a PM on the site and said she had the same symptoms and was terrified because she didn't know what it was.
I did my best to educate her on BFS, the anxiety connection, and the likelihood that it was nothing serious or ALS related.

She had seen at least 5 doctors who were stumped, but very much like me, she was not going to just sit back and give up.
She was far more tenacious than I was about researching, learning, and trying to nail down a cause.
Even to the point that I found myself telling her to stop looking under every rock for a cause, because I felt she was going way off track with some of her theories (believe it or not!).

She also noticed increases in twitching upon eating certain foods.
Just like me, and many others here, in the hour or three after eating, twitching would increase dramatically.
I told her about my feelings that certain foods would trigger it, and gave her a list of foods to avoid.
Just to see if the twitching would decrease.
So she began on this diet change, and struggled through "falling off the wagon" (its not easy) for several weeks.
She began to comment that things were improving.

After about 3 months, she told me she had asked her doctor to test her for C. Difficile infection.
I think she did a stool sample. At this point I told her she was wasting her energies still trying to look for a cause.
She ignored me, thankfully, and the test came back positive.

Her doctor theorized that her intestinal system / gut had been damaged due to some cause.
And that she was dealing with the (now well recognized) leaky gut syndrome.
This is a syndrome where food toxins are not properly sealed off from your blood stream.
Ingredients like Gluten, and other inflammatory foods can cause this to develop over many years.
The end result is food toxins entering your body and causing everything from Autoimmunity to systemwide inflammation, infection, etc.
I have no idea if the C Difficile was the single cause of her gut permeability problems or if it was something else.
But she came back positive for it.
(Side note: I was diagnosed with a new CMV infection which heavily affects the Gut as well, during primary infiltration of the virus)

Here was our conversation (posted with permission):

Her: Kevin are you okay? They have finally found out whats been wrong with me, ive had c difficile for 9 months. I dont know if maybe you could have had the same? X

Me: Do your doctors think that explains all the muscle twitching, muscle cramping, nerve stabbing symptoms, etc.?

Her: Yes they do because its wiped out all the good bacteria / gut flora. Caused leaky gut syndrome and gut permeability problems. The diet you suggested is supposed to help too. My doctor says its a bit like caeliac disease, but in my case the colon has been so inflamed that I havent been able to digest anything properly. Even drinking water has caused me problems. But now I have been put on treatment, and so far, so good.

Me: Did the doctor actually say that's the cause for muscle twitching all over your body? Because it's nowhere in any of the documentation for C. difficile. You stopped twitching after starting treatment?

Her: Yes only the odd one per day now, I suppose the colon is still in recovery. Yes a doc told me that the inflamed gut can cause all sorts of systemic neuromuscular problems, i ll send u something if I can in a mo for you to read about it - it describes my case exactly, not sure its the same for yourself though but I hope you find the cause soon. I will need to give it 6-12 months for my intestines to heal and avoid glutens completely, and other inflammatory foods.

Me: On the forums I have participated on, food sensitivities have been a huge factor for those who bothered to check properly, and eliminate for long enough. Obviously this is because we have reduced our gut inflammation. But if you clear the twitching after a few days on treatment, that is going to be a huge evidence that this is a gut infection. At least for many of us. Your symptoms have been identical to everyone on that forum. And do I have your permission to paste this conversation onto that forum, if it will help them? Just want to make sure that ahead of time.

Her: http://neurotalk.psychcentral.com/showt ... p?p=991242 read through this kevin its exactly what ive been suffering with but read the guy who comments second he has what I have. Yeh you can do but please dont put my name lol its kind of an embarrassing subject ha x

Me: You're going to laugh. I know the guy posting in that thread at the top. SecretAgentMan. He's on the forums I referenced above. To my knowledge he has no diagnosis of C Difficile. He just assumes intestinal inflammation as a possible root cause. You're right we all share the same symptoms though.

Her: Well that is odd lol but he says that he has had fecal transplants? So he must have had the c diff kevin? X

Her: Hey, strong antibiotics cause c diff - truvada and kaletra (which we took) also cause it. I took two courses of penicillin and two courses of uti antibiots and symptoms then went insane . Please get it checked kevin asap! Ive been taking metronidazole for ten days, 400mg three times per day. I am no longer twitching. If it comes back I go on an antibiotic beginning with a v the name escapes me x

Me: Yes the Vancomycin is for C. difficile infections that don't fully clear with Flagyl.

Her: I have also taken antibiotics aince being a baby after four to five times per year because my doc never had my tonsils removed so I suppose my gut was alreasy ib bad shape so it was a disaster waiting to happen for me x

Me: I have been on antibiotics my whole life also. Multiple infections with pneumonia and bronchitis and other issues. I even have stained teeth from too many antibiotics as a child. Who knows…

(a week later)

Her: Kevin I know mine is gut related because im majorly improved, the doc told me the antibiotics cause the trouble in the colon. Untreated c diff will cause muscle wasting and hair thinning too, both of the symptoms ive been suffering. I just hope to god my colon can recover? X I had to force my docs to give me the c diff test, they kept telling me I would not be standing in front of them looking like I do with c diff! Lol x Im also going to keep off the gluten until I fully recover - a bit like weening a baby x I cant believe though that I have let this c diff rule me for nearly a year and go undiagnosed like this. I actually did human biology for two years and I studied c diff and I kept thinking no cant be that because I didnt have the diarrhea.

Her: Now? I still have the odd twitch here and there. But nothing like before x I dont think that once the bad bacteria is wiped though that will be the complete end I still believe it will take time to grow the flora back in the gut a bit like a forrest that has been completely wiped will not grow back overnight x

Me: Well it takes several months for the gut to heal after damage has been done so its important that you stick with a Paleo-like diet for at least that long. You want to keep gut inflammation at a minimum and let it heal.

Her: I believe The twitching isn't because of the c diff directly. I believe its caused by the inflammation in the gut, which the C Difficile creates. The lack of the good bacteria in the gut flora is what absorbs and digests our food , without it we can not digest properly and so causes inflammation. Until I have got rid of the bad stuff, the good stuff can not win the war, and the inflammation will go down - this is what I believe x Read about faecal transplants x It's a bit gross but it has helped to stop twitching in many people x

Me: How many days left on meds?

Her: 3 days left. Twitching basically gone.

Me: 94% cure rate on those meds, at least for the C Difficile part.

Her: yeah but side effects. I cant wait to finish, just been to the cinema and my head is still crazy hurting, was awful all thw way through the movie x

(a week later)

Me: Whats up? You're done with the meds now. Any updates?

Her: Hey , they are putting me on the "V" named antibiotic tomorrow as second drug, because symptoms have come back. Seems as tho the antibiotic wasn't strong enough to get rid of it? I will let you know how those go though and tell you how the symptoms go.

(a week later) - August 17

Me: How are things?

Her: hey , im a lot better than I was , I think the antibiotics have helped a lot . just very slight symptoms now which I believe is due to lack of gut flora , but who knows . x

Me: How long you been off the antibiotics?

Her: I stopped the v antibiotic half way because the made me feel super sick. So i haven't been off them long, but now I am feeling so much better. Not back to my old self just yet but a big improvement x I still v much believe its gut flora related deff for me though which may explain why paleo works so well x

(then a month passed ....) - September 23

Me: How are the symptoms?

Her: Hiya I very rarely feel anything now so im hopefull its almost over, u? X

Me: Me too. Im almost at 100% now. But I have to stick with the avoiding Gluten and pasta and bread things

(October 2)

Me: So has your twitching stopped?

Her: I have an odd twitch now and again, but thats it. Little movement sensations which I would not even consider twitch feelings anymore x

Me: So you honestly don't twitch anymore?

Her: Rarely if ever now!

Me: What do you credit the most? meds or diet or ?

Her: I noticed dramatic improvement after finishing the meds and the diet seems to be key to maintainin it

Me: You really dont have fatigue, feel like crap, muscle twitching, or any of the stuff you had before?

Her: I am feeling alottttttt better not 100 percent but lots better, I only feel tired when I eat gluten .. then I get the circles racoon eyes too x

Me: honestly how much do you twitch during the day now

Her: Hardly ever x do u still get them?

Me: no... almost not at all. i dont notice it all day. maybe literally one jiggle. if I have a bunch of dark chocolate it will get one muscle jiggling for maybe 5 minutes then stop

Her: Good glad they are nearly gone for u too, x I think its leaky gut in small intestine? Candida too internally maybe due to the antibiotics x

--------------------------------------------------

So there you have it. This girl had BFS for about 14 months prior to taking the steps described above.

Not sure what conclusions to come to, but I just wanted to get this in here for the record.

If anyone wants to contact her directly I can put you in touch with her via her facebook.

Kevin
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: BFS Cured by treating Intestinal Inflammation / Infectio

Postby aztwitchy on October 17th, 2013, 1:35 pm

"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: BFS Cured by treating Intestinal Inflammation / Infectio

Postby SecretAgentMan on October 17th, 2013, 2:38 pm

Wow, a blast from the past. I used to frequent that forum early on but I found very few people were interested in what I had to say so I simply logged off one day and never returned. I found the AboutBFS community more engaging, so I stuck around. I'm happy to see another success story though. Thanks for posting BFSB. I'll log back into the other forum to let everyone know I'm still doing just fine 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: BFS Cured by treating Intestinal Inflammation / Infectio

Postby BFSBurger on October 17th, 2013, 3:57 pm

The gut as a neurological organ.
Holzer P, Schicho R, Holzer-Petsche U, Lippe IT.
Source

Department of Experimental and Clinical Pharmacology, University of Graz, Austria.
Abstract

We refer to the gut as a neurological organ to emphasize the particular importance of the nervous system in the regulation of digestive functions, given that the gastrointestinal tract is innervated by five different classes of neurons: intrinsic enteric neurons, vagal afferents, spinal afferents, parasympathetic efferents and sympathetic efferents. Virtually each aspect of digestive activity is under the regulatory influence of neurons, among which the enteric nervous system (ENS) plays the most important part. The ENS acts like a brain in the gut that functions independently of the central nervous system, contains programmes for a variety of gastrointestinal behaviours and governs the activity of all gastrointestinal effector systems according to need. Intrinsic sensory neurons supply the ENS with the kind of information that this system requires for its autonomic control of digestion, whereas extrinsic afferents notify the brain about any data that are relevant to energy and fluid homeostasis and the sensation of discomfort and pain. Many diseases of the gut, particularly the functional bowel disorders, seem to be related to dysfunction of the ENS and other components of the gastrointestinal innervation. The ENS and extrinsic afferents are hence prime targets for the therapeutic management of gut diseases and for the relief of the pain and discomfort associated with these disorders.
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: BFS Cured by treating Intestinal Inflammation / Infectio

Postby BFSBurger on October 17th, 2013, 3:58 pm

Probiotics In Future May Be Prescribed For Your Neurological Well-Being
Academic Journal
Main Category: Neurology / Neuroscience
Also Included In: Endocrinology; GastroIntestinal / Gastroenterology; Psychology / Psychiatry
Article Date: 06 Jul 2011 - 8:00 PDT

Good bacteria, also known as 'Probiotics' are known for their favorable effects in maintaining gastrointestinal health, but can they encourage psychological health too? New research conducted at the Texas Tech University Health Sciences Center has explored the new world of neurological probiotics and the scientists have put forward novel ideas on how neurochemicals enforce their beneficial effects in maintaining a healthy gut and even psychological well-being when delivered directly to the gut, via probiotic intestinal microbiota. The study was led by Professor Mark Lyte and has been published recently in BioEssays.

The researchers have proposed that neuroactive compounds if delivered via neurochemical-producing probiotics could help improve a host's gastrointestinal and psychological health. These probiotics could be prepared for delivery of the compound using a unifying process of microbial endocrinology.

"This paper proposes a new field of microbial endocrinology, where microbiology meets neuroscience," said Lyte.

"There is already evidence to suggest that the connection between gut microbes and the nervous system represents a viable route for influencing neurological function. A recent study in mice, for example, showed that the presence of neurochemicals such a serotonin in the bloodstream was due to direct uptake from the gut."


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

viewtopic.php?f=3&t=19128
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Re: BFS Cured by treating Intestinal Inflammation / Infectio

Postby emmie.s on October 18th, 2013, 6:46 am

Wow. Really interesting info guys!!!! This makes so much sense. Last year I took antibiotics waaay too much, and broad spectrum augmemtin at that (for tooth infection, ear infection, sinus infection). I didn't start probiotics until late summer. I didn't cut out gluten and start eating lean meat until late summer/early fall. Now I can say with 100% certainty that my symptoms have improved due in large part to diet modification.
In addition to twitching I had horizontal nail ridges and struggled with b12 and iron levels, and in retrospect maybe they were all related to poor diet, because for a decade I was a sweets and carb loving vegetarian.
I don't think this is the answer for everyone, as BFS might be caused by so many things, but many here should at least consider it.
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Re: BFS Cured by treating Intestinal Inflammation / Infectio

Postby BFSBurger on October 19th, 2013, 11:19 pm

emmie.s wrote:Last year I took antibiotics waaay too much, and broad spectrum augmemtin at that (for tooth infection, ear infection, sinus infection).

I also took Augmentin just prior to my BFS starting.

-BFSB0
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: BFS Cured by treating Intestinal Inflammation / Infectio

Postby emmie.s on October 21st, 2013, 9:36 am

I looked back on my medical history this past weekend and realized that the year prior to BFS symptoms, I took Augmentin twice and Amoxicillin twice. Before my wisdom tooth removal I had to take it because my tooth was infected, and then the twitching started the next day. I would say 4 courses of antibiotics over a period of only a year really screwed my intestinal health up!!! Its a shame my neurologists didn't help me come to that conclusion and BFS connection, because if I had taken probiotics and changed my diet sooner, maybe I would've saved myself a $300 trip to the ER for Xanax and saved myself the expense of two unnecessary EMGs. I'm looking at the EMG bill which I got in the mail on Friday, and its $1000. My insurance refuses to cover it.

I am happy it was all unnecessary expenses (vs. necessary!), and I am so THANKFUL to God that I am fine. I just wish I had known this fact sooner. Hindsight is 20/20!
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Re: BFS Cured by treating Intestinal Inflammation / Infectio

Postby SecretAgentMan on October 21st, 2013, 9:57 am

Don't worry emmie.s, a lesson learned the hard way is also a lesson you are far more likely to remember.
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: BFS Cured by treating Intestinal Inflammation / Infectio

Postby muppetdog on October 24th, 2013, 9:57 am

Very interesting. Did she say what kind of doctor she went to? Was is a normal MD or some sort of natural Doc?
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Re: BFS Cured by treating Intestinal Inflammation / Infectio

Postby SecretAgentMan on October 24th, 2013, 4:08 pm

muppetdog wrote:Very interesting. Did she say what kind of doctor she went to? Was is a normal MD or some sort of natural Doc?


I had to smile when I read this... It is my hope that one day 'natural' doctors are considered 'normal'.
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Re: BFS Cured by treating Intestinal Inflammation / Infectio

Postby BFSBurger on October 24th, 2013, 8:59 pm

muppetdog wrote:Very interesting. Did she say what kind of doctor she went to? Was is a normal MD or some sort of natural Doc?

She's somewhere in the UK and went to a regular MD. Several I think. She mentioned she had to fight her way to get the Difficile test done, so that pretty much confirms its a regular doctor, as they do everything in their power not to run tests or rule things out, which they, in their infinite perfect wisdom, don't deem necessary at the time. Yep. Normal doctor for ya. :roll:
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: BFS Cured by treating Intestinal Inflammation / Infectio

Postby lcanela on October 30th, 2013, 6:09 am

I have convinced my GP to get me tested for C. Difficile. but I honestly think the results will be negative.

Will keep you updated.

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Re: BFS Cured by treating Intestinal Inflammation / Infectio

Postby BFSBurger on October 30th, 2013, 9:36 am

I think the moral of this thread isn't that we all may have C. Difficile. We probably don't. I never went and got tested for it after I spoke with her, and you know I am psycho about getting tested for everything.

The message I wanted to convey is that intestinal inflammation, and gut permeability / leaky gut syndrome caused by infection can, and does play a role in Benign Fasciculation Syndrome for some individuals. And that treating gut inflammation (via whatever means you wish - meds, dietary changes, etc) can treat the systemic inflammation causing the agitated nervous system. Just like controlling anxiety plays a role. A huge one.

You see people here who preach the anxiety control method, and confidently state that they have tackled it ... yet they still twitch. For years. And years. So here we have a documented example of someone dealing with a compromised gut barrier lining also having BFS. And that treating her gut inflammation 100% cured her BFS. She's fairly neurotic with health. I doubt she has done a single thing to calm her emotions or anxiety. She doesn't hang out here, and isn't even aware of the "anxiety/BFS" connection. She looked at it as a medical problem with a cause, and went on her own testing expedition based on her own internet research. She hasn't focused on calming her anxiety at all. She treated her gut. She's a verifiable person and you can contact her directly on facebook if you want.

I don't want to be "the gut guy" here. I never believed in any of this. I simply noticed more twitching after certain foods. I would have to be an idiot to ignore the correlation. Its as simple as that. So I began avoiding those foods. Religiously. Without exception. And it turned out they were all foods on the "off limits" list for gut permeability and inflammation diseases like Celiac, and Autoimmunity. Antibiotics can cause gut permeability issues. Many here got BFS after a course of antibiotics. Which of course was after a bout with a virus of some sort. Maybe we all got a virus and that's agitating the nervous system. Maybe it was the antibiotics finally poking holes in our gut after years of eating poorly causing the same. I have no idea. Augmentin has documented that it causes gut permeability - and that's what I took before my BFS. Aspirin, ibuprofen, and several other meds cause it as well. Gluten causes it in spades. Grains. Other difficult to digest foods. There are many .... many sources.

Why would eating a pizza cause a seeming central nervous system disorder that mimicks ALS? I have no .... freaking ... idea. But Im learning about how long term use of these foods does eventually cause diseases of many kinds. So there's some legitimacy to it all. Moral of the thread was just that I believe gut inflammation / infection / permeability plays a role in BFS for many (maybe not all) of us. I never got tested for C. Difficile. Even after I spoke with her. But I have been on a diet that heals gut inflammation for 9 months already. And i no longer twitch. At all. So i basically handled my gut inflammation on my own. I have never been a "wholistic" or "natural remedy" type person at all. I quite honestly have thought it was total nonsense most of my life.

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

viewtopic.php?f=3&t=19128
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Re: BFS Cured by treating Intestinal Inflammation / Infectio

Postby SecretAgentMan on October 30th, 2013, 5:43 pm

BFSBurger wrote:I have never been a "wholistic" or "natural remedy" type person at all. I quite honestly have thought it was total nonsense most of my life.


Amen brotha. I've commented many times about how I felt like an idiot for even going to an alternative medicine doc back during my heights of BFS. The things they suggested and the techniques they used worked though, and today I feel better than I did even 10 years ago in my early 20's. Not only did I overcome BFS, but other small and annoying health nuisances as well. Pretty amazing stuff.
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Re: BFS Cured by treating Intestinal Inflammation / Infectio

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