Thinking of coordinating a group diet experiment/challenge

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Re: Thinking of coordinating a group diet experiment/challen

Postby SecretAgentMan on August 15th, 2013, 12:46 pm

johnnythejet wrote:I can deal with and dish out sarcasm, but the personal attacks and insults are a problem. They've been present all too often lately and it detracts from what this forum is about. I think people need to remember some things:
1. Its okay for people to disagree with you.
2. If you disagree with something, take aim at the content in question and NOT at the author. Or at least do it privately and not publically.
3. Making personal attacks in lieu of intelligent (or not) debate reflects poorly on you.
4. We are ALL on the same team here, even if it doesn't seem so. If we all kept this in focus, then its easier to avoid letting things get personal.


If this were a facebook status I would click 'like'.
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: Thinking of coordinating a group diet experiment/challen

Postby aztwitchy on August 15th, 2013, 5:16 pm

johnnythejet wrote:
SecretAgentMan wrote:Please cease the insults and sarcasm back and forth. This thread is supposed to be aimed at helping people who want to try to modify their diets do so.

I can deal with and dish out sarcasm, but the personal attacks and insults are a problem. They've been present all too often lately and it detracts from what this forum is about. I think people need to remember some things:
1. Its okay for people to disagree with you.
2. If you disagree with something, take aim at the content in question and NOT at the author. Or at least do it privately and not publically.
3. Making personal attacks in lieu of intelligent (or not) debate reflects poorly on you.
4. We are ALL on the same team here, even if it doesn't seem so. If we all kept this in focus, then its easier to avoid letting things get personal.


i will agree to this but you are also to blame Johnny...if you and seepi will discontinue the tone of disrespect then I will also.

I think its really sad that 4 people have stated that FOR THEM diet changes have HELPED IMPROVE their SYMPTOMS but there is a total disregard for their experience because it doesn't fit with the larger percentage or 3 of the 4 haven't been around long enough. None of us have promised a cure to my knowledge...it is now blatantly obvious that no matter what anyone reports back (i.e. AdamK) there will be an immediate effort to add a disclaimer to this persons experience and undermine their thoughts. To me it has proven one thing Burger was alluding to and that is certain members are intending to sabotage this thread.

instead of showing support for AdamK and the fact one of our fellow BFSers have achieved improved symptoms their is a motivation to immediately chime in and reject his feedback. SAD. maybe his results won't last but what if they do...their is absolutely zero harm in trying diet changes as opposed to some of the medications i have tried.

i honestly could care less if people want to alter their diets or not. I am just relaying that so far a gluten free diet has been one of the few/only things in my case that helped me. I'll keep saying it as long as you guys keep disregarding my experience. And if there is a tiny percentage that can experience the same by trying it then I am really happy for them just on the fact they are improving and regaining somewhat of a normal life. In a way I would be happy if for me diet wasn't a factor because I would love nothing more than to have a couple slices of regular pizza.

FYI
I twitch 24x7 365 days out of the year....i have tried:
A) neurontin - did nothing
B) Keppra - didn't help, made me feel very agitated mentally
c) Klonopin - made my BFS worse
d) mirtazapine - did nothing for BFS, helped my sleep
e) any supplement you can name - did nothing, sometimes made things worse
f) no carb diet - did nothing but made me feel lethargic
g) lexapro - put me in the hospital
h) meditation - helped my anxiety did nothing for BFS
i) accupuncture - did nothing
j) light excercise - did nothing
k) no excercise - did nothing
l) heavy excercise - BFS worse
m) anxiety counseling - helped me mentally cope, had -% impact on twitching
n) gluten free diet - gave me probably a 70% improvement in symptoms (if I deviate (which was done on accident a few times) I immediately get a flare up along with other non-BFS symptoms)
"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: Thinking of coordinating a group diet experiment/challen

Postby johnnythejet on August 15th, 2013, 7:44 pm

Azt-
Here you go again.....

I wasn't placing blame. I was pointing out something that all respectful posters here believe in. Is it really that hard for you to just agree/disagree without making it personal? Anytime you disagree with something I or anyone else contends, then feel free to point out the errors in my logic, etc. or offer your differing opinion. Any notion you have that questions my (or anyone else's) intentions is outside the boundaries of what anyone cares about. If you want to believe I'm out to sabotage you or anyone else and their ideas then that's fine and I really don't care. Just keep it off the forums because that's not what this place is about and nobody cares. Keep those discussions to PMs or contact the admin. The bottom line is that if you truly agree with points in my last post then abide by those basic standards. Its quite simple.

Thanks for sharing your opinions on diet and how you prefer to respond to associated feedback from others. Feel free to provide commentary consistent with your ideas to your hearts content. I will continue to comment on topics as I always have as well. I acknowledge that we disagree on a number of points (as do others) and that's just fine. Different points of view are encouraged and necessary so people can learn as much as possible about a fairly unknown condition like BFS.

Thanks
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Re: Thinking of coordinating a group diet experiment/challen

Postby aztwitchy on August 15th, 2013, 10:57 pm

SecretAgentMan wrote:Please cease the insults and sarcasm back and forth. This thread is supposed to be aimed at helping people who want to try to modify their diets do so.


done. my apologies SAM
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Re: Thinking of coordinating a group diet experiment/challen

Postby Adamk on August 23rd, 2013, 11:33 pm

It's been a while since I checked in but I thought I would give an update on how the diet/ medication reduction is going.
I have seen a great reduction in the symptoms, I spend way less time thinking about twitching now and I have barley any twitches anymore. I would say I have had a 80% reduction in twitching in the past 7 weeks since starting this diet. I have kept my ambien down to 5mg a night or less to sleep and I feel that my brain is finally starting to heal itself. Some days I have no noticeable twitching some days I have a few but nothing like before. No hot spot flair ups or long lasting ones. If I have one it is a short one that goes away quickly. So I am going to keep going even though its hard to not eat anything fun. Especially now that our state fair is going on. I have continued my weekly trips to a therapist too to help with the OCD thoughts and a Chinese medicinal healer for dietary advice. I am beginning to put new foods into my diet too to see what ones set me off now that my symptoms are under control.

I hope others are having success too, I'm going to take off for a few weeks again and check in to let you know how it's going.
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Re: Thinking of coordinating a group diet experiment/challen

Postby SecretAgentMan on August 24th, 2013, 7:28 am

Thank you Adamk. Does your doctor of Chinese medicine know allergy elimination techniques? If they do, they should know the appropriate time to start implementing them. If you put the cart in front of the horse it is of little value, but once you've healed sufficiently you can correct the immune system from continuing to identify things like gluten as a threat. You will want to moderate it but at least you won't have to avoid it like the plague. Anyway, thanks for keeping us in the loop. Your success thus far is very encouraging.
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Re: Thinking of coordinating a group diet experiment/challen

Postby muppetdog on August 24th, 2013, 11:07 pm

If anyone is interested in more of the science behind the Paleo Diet here is Loren Cordain's lecture on the topic.

http://www.youtube.com/watch?v=5dw1MuD9EP4

I am sure some folks that aren't that science-minded might not be able to sit through this, its' kind of long. But, I found it fascinating.
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Re: Thinking of coordinating a group diet experiment/challen

Postby aztwitchy on August 26th, 2013, 9:42 am

Adamk wrote:It's been a while since I checked in but I thought I would give an update on how the diet/ medication reduction is going.
I have seen a great reduction in the symptoms, I spend way less time thinking about twitching now and I have barley any twitches anymore. I would say I have had a 80% reduction in twitching in the past 7 weeks since starting this diet. I have kept my ambien down to 5mg a night or less to sleep and I feel that my brain is finally starting to heal itself. Some days I have no noticeable twitching some days I have a few but nothing like before. No hot spot flair ups or long lasting ones. If I have one it is a short one that goes away quickly. So I am going to keep going even though its hard to not eat anything fun. Especially now that our state fair is going on. I have continued my weekly trips to a therapist too to help with the OCD thoughts and a Chinese medicinal healer for dietary advice. I am beginning to put new foods into my diet too to see what ones set me off now that my symptoms are under control.

I hope others are having success too, I'm going to take off for a few weeks again and check in to let you know how it's going.


Cool Adam....when adding stuff back in just go slow...I have successfully added back in tomatoes and eggs on an infrequent basis....I'm convinced gluten is the source of 80% of my aggravation...the other 20% will take years to calm or possibly never and I'm cool with that.
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Re: Thinking of coordinating a group diet experiment/challen

Postby SecretAgentMan on August 27th, 2013, 8:54 am

Shouldn't be years. Only months with the right measures.
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Re: Thinking of coordinating a group diet experiment/challen

Postby angelo212 on August 27th, 2013, 4:22 pm

I need to read this whole thread from page one. I only read from half of 5 to 7 (the end). I think jumping on a change of a healthy diet is good for everyone. You really are what you eat. What you eat definitely causes inflamation in the body. Many people are gluten intolerate but not everyone like all the websites push on everyone. There were alot of good stuff in just that bit I read and some "crap" to. My take on it is "diet has nothing at all to do with periphial nerve hyperexcitability" and will do nothing at all for your potassium channals, sodium chanals etc. . My take on why people are getting less twiching while eating what they are is because they would have less twithing at this time anyway. With that said I am very glad your are talking about diet change and in a intelligent way at times that I am very interested in. I will continue to read this post and add to it as it is a great thread even If I don't agree with why your doing it. I also may start a blog of my diet and am getting excited to do so.
Gotta love BFS. It's the gift that keeps on giving.
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Re: Thinking of coordinating a group diet experiment/challen

Postby SecretAgentMan on August 27th, 2013, 4:59 pm

Thanks angelo. I was certainly surprised at the impact that diet had on my symptoms back when I was first exposed to the concept. There are a lot of factors at play and I understand the relationship between diet, the immune system and the nervous system better now so it makes much more sense. After reading the thread let me know if you have any questions. Thanks for reading.
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Re: Thinking of coordinating a group diet experiment/challen

Postby aztwitchy on August 27th, 2013, 5:16 pm

angelo212 wrote:I need to read this whole thread from page one. I only read from half of 5 to 7 (the end). I think jumping on a change of a healthy diet is good for everyone. You really are what you eat. What you eat definitely causes inflamation in the body. Many people are gluten intolerate but not everyone like all the websites push on everyone. There were alot of good stuff in just that bit I read and some "crap" to. My take on it is "diet has nothing at all to do with periphial nerve hyperexcitability" and will do nothing at all for your potassium channals, sodium chanals etc. . My take on why people are getting less twiching while eating what they are is because they would have less twithing at this time anyway. With that said I am very glad your are talking about diet change and in a intelligent way at times that I am very interested in. I will continue to read this post and add to it as it is a great thread even If I don't agree with why your doing it. I also may start a blog of my diet and am getting excited to do so.


prior to my experiences I would have agreed with you wholeheartedly angelo. but my life experiences to this point have proven otherwise in my particular case. I am certain there may be at least someone else out there that fits my profile also. maybe not many but I'm sure a few. my main point of disagreement would be the assertion that i would have less twitching at this time anyway....I considered this but as I have told SAM in private I have had 2 episodes where gluten was accidentally ingested without my knowledge and in both cases I experienced a full blown episode of symtpoms. Both times the symptoms came on quickly and severe and at that point I questioned what I ate...not the other way around as some would presume. In other words in both of these "episodes" I didn't find out I ate gluten and then BAM symptoms....instead it was BAM symtpoms....research what I ate....gluten.

One was even in a cafe that is gluten friendly in town. I had a meal that I was told was gluten free. immediately after I had terrible symptoms...I called later that day to ask about the meal and ingredients and was assured it was gluten free. a few hours later I received a call from the restaraunt and they apologized and informed me they switched a vendor and in fact one of the ingredients did actually contain gluten.

maybe I am an isolated case on this forum but I know for certain gluten absolutely large increases in symptoms for me personally. take that for what its worth.

all the best on your own diet experiences and experiments.
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Re: Thinking of coordinating a group diet experiment/challen

Postby emmie.s on August 27th, 2013, 5:47 pm

I thought I'd chime in here regarding gluten...about a week and a half ago after getting a hotspot on my outer calf I decided to go gluten free and cut back on my sugar. After three days my hotspot and big twitches went away, and all that was left was random small quick twitches, lasting no more than a second and only noticeable when I lay down. It was IMO an improvement. Yesterday and today I cheated. I ate donuts, drank wine, had bread and butter, and just finished off a large cookie. You could say I tested my hypothesis. Right now a new spot (my knee) is
twitching away. Coincidence? I don't think so. Right after I finish off this glass of wine with this crusty French bread and manchego, I'm back on the diet. Cheers.
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Re: Thinking of coordinating a group diet experiment/challen

Postby Adamk on August 28th, 2013, 3:42 pm

I had a follow up appointment with a neurologist from the university of Minnesota today and they confirmed that yes it is bfs, and he also said the steps that I have taken so far have been the right steps. He said diet, managing existing medications and stress are the 3 things to work on to help with symptom management. He also told me that dairy should be ok but to gradually add it back in. I started a new probiotic enzyme that is supposed to help with a wide variety of food sensitivity that I got from whole foods. And ate a small amount of cheese. I have a feeling I will be ok with dairy but gluten I will avoid frorever. He also said the medications that I was on were a definite factor and they can re-wire the brain when taken long term, but that it is not perminant and most cases of bfs he has seen have resolved within the first year. So I am hopefull especially with the progress I have made so far in the past 2 months. I feel better all the time and I am healtier and less stressed than I have been without medication in a long Time. So in short I'm just going to keep on going and hopefully god willing it will go away. But even if it stays this way I am now at a level where it doesn't bother me much and I can sleep and relax again.
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Re: Thinking of coordinating a group diet experiment/challen

Postby chicagobfs on August 28th, 2013, 6:11 pm

Unfortunafelly for me diet didn't change much. I started eating normally on vacation and nothing happend I actually had less twitching:) I'm not sure if I will try another diet, but if yes, I'm thinking of trying raw diet to make na body more alkaline ? I will also test myself for gluten intolerance and sensivity.
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