Healing and Recovery Through Diet

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Huh that's handy to know. I have heard a lot of speculation over the years back and forth over wether or not it is good for you, but I know that my uncle that is a truck driver and has been inside some dairy facilities won't touch the stuff. It used to tear my stomach up when I was a kid, its got better in the last 7 or 8 years so I just drink it any way. However it is worth putting it away for awhile to see if it is part of the problem.Looking at your test results SAM it makes sense that diet modification is playing a big role for you. My family is notorious for colon trouble and I am starting to wonder if there is not some sort if shared set of food sensitivities.Just out of curiosity, how long on average before substantial results are seen by going gluten free? I had some symptom improvement early on but I have been kinda run down since. Average to slightly below average number of twitches, however the tremors are actually more noticeable in my right hand now. I am starting to wonder if there is something I am missing. I wonder if the initial improvement was just sort of my expecting to get better, as my anxiety was better the first day or two. Yesterday I had a low fever and what felt like a bit of inflammation in my appendix, which is common in my family we do this for years starting around 20 and then have the final big attack causing removal by about 27 or 28. It's almost like clockwork. I am wondering if maybe quitting gluten cold turkey maybe hard on some people's system, it could be that for some of us we should taper off as these little bouts with appendix for coincide with some sort of G.I. trouble usually. I also wonder if maybe it is just my system clearing years of inflammation from gluten exposure.I am by no means ready to give up on the experiment though. In fact I am certain that food is playing some role in all this, it may just take awhile to pin down exactly what foods and how they effect me.
 
I have been doing the diet secretagentman has described forn3 weeks now. It has helped me calm my symptoms Dow quite a bit. I still do have flutters but the hard hitting twitches are very few. My anxiety is less to partially because I feel physically better. I am going to continue this diet for a few months to see how I feel. One nice thing is I have lost 12 lbs of fat since I started it so if nothing else I'm not as fat as I was. I have been trying to avoid all the meds but unfortunately I am still stuck taking sleeping pills every night. Have been for years way before I had this issue. I've also been taking b12,b6 D and glutamine every day. The vitamins help my additive allot wich in turn helps me cope and have fewer symptoms. The glutamine is for digestive aid. I have found allot of cool things to eat instead of all the other stuff I've eaten for years, I even found almond cheese to replace regular cheese. It can be very hard and some times it feels like its all for noting but it is a slow process. So it will take time to help. I don't know if it will every go away but I'm hoping to get it to a manageable level so I am not always worried about it.
 
It is already 4 days being on this diet and I have to say I don't see much improvement, if anything I actually twitch more? probably just a coincidence. I was also thinking if I actually started the wrong way? I believe that the idea of this diet is to avoid gluten and other inflammatory foods? Wouldn't be better if I just test myself for gluten intolerance or sensitivity? Or take this controversial food sensitivity test? I'm a little confused, any thoughts?
 
Chicagobfs, by all means go ahead and have a blood test done like I had to find out if foods are your problem. In my case it was a few hundred bucks and wasn't covered by insurance. Usually a simple diet experiment like this will yield enough results to let you know if you're on the right path because gluten, dairy, and processed foods usually contain the most likely culprits. That's never a guarantee though. In the past I used to recommend the blood test but I'm not sure if anyone took the issue of diet seriously enough to actually get one. The diet was essentially free and easy to try. At least now a few people are seeing results to indicate that this may be the right path to pursue. The gut is not the only path to the immune and nervous system though so others may have different issues going on. A blood test would definitely give you more answers though. Keep us posted.
 
Still on the diet and absolutely no change. Today I feel worse in weeks :rolleyes: my body feels infected with fatigue and twitching but I think that can be due an ear infection and playing more racquetball yesterday than usual
 
I am please to report that I had a great day yesterday, I went most of the day with zero twitching, only had some tingling in my arm and a few eye twitches. Today wasn't as good I think from the type of beef I had yesterday. But overall the twitching is better. It's so hard when I get those sugar craves though I really wanted a blueberry muffin but processed sugars are bad for this diet.
 
WindyCityGentleman, those definitely can contribute to twitching. Diet was only part of the equation for me and even on my best days I would have ramp ups in symptoms if I had a virus, bacterial infection, or some other source of stress on my body. Did you ever get a blood test for food allergies? Adamk, that is awesome news. I'm glad others can find some relief in adjusting their diets. I know what you mean about the cravings but it does get easier. I promise.
 
Well I had to pull out of the diet. No matter what I did I could not seem to keep my blood sugar levels in check, I was bottomed out all of the time. I felt an initial improvement, but I honestly wonder if that was because I expected to. I have less twitches now than I ever have, they are still there and I have days where they are more pronounced but overall they have faded into the background. Funny enough though I really noticed an improvement when I quit worrying about them. Now I still have a fine tremor in my hands, and the whole ratchety muscle thing. I have noticed that since I have shifted my fear from ALS to another disease which I won't name as even seeing it bugs me out now, that my symptoms have changed. The tremors are more pronounced now etc. For me I think the anxiety component is the chief issue. However I have not abandoned diet completely and am going back to the drawing board. I plan on rotating foods out to just see what if anything I respond to. I still think diet may play a role.
 
I had a awesome day with zero twitching up until just now because of my stressful job. I had to get yelled at by a customer about their phone bill and it always sets me off. I'm better now but the stress definitely triggered a flair up. This job would be great if it weren't for the f@*#ing customers! But point is the diet is showing results for me. Slowly but making progress.
 
For now, I feel like I need to post in this thread to help people out who are trying to reduce systemic inflammation via dietary changes, and calming the gut. Its nice to see that people are already reporting feeling better from these changes. Please remember that this is a long process of "calming your system". It is the *absence* of triggers that you are introducing right now. The *absence* of agitators. This "state of digestive calm" and ease will create an environment of less stress on the system. I see a few people struggling with what specifically to eat. Each person is different, so you need to decide (based on how you feel 1-3 hours later) whether you can tolerate the below, but below you will see what has worked for me. This is my daily regimen. The below has brought me to nearly full recovery in quite a short period of time:Please listen to this when you get a chance: Breakfast:1 - two eggs, scrambled, cooked in 1 tablespoon Olive Oil, pinch of salt2 - yellow gatorade, glass of water, fish oil capsule3 - KIND brand: Maple Walnut Clusters (cereal) - gluten free, mixed with KEFIR milk, Almond Milk, Cantaloupe, Blueberries, Blackberries (all organic)4 - Two tablespoons of Flax Oil - pour over cereal.Juicing:Slow, masticating juicer (omega brand)1 - two carrots, three stalks celery, handful broccoli "head" pieces, one red apple, four leaves rainbow shard.Pour in glass with straw, leave in refrigerator, sip throughout day.Lunch:1 - one whole organic potato (200g) peeled - mashed. No milk. No butter. Plain.2 - chicken leg / breast / thigh, tasty sauce (bbq, etc)3 - glass of water or gatorade.Dinner:1 - same as lunch. basically meat, whole organic mashed potato, sauce of any kind for taste.Monday through Thursday I choose to take the following. 100mg - Ubiquinol (CoQ10)100mg - ALA100mg - RLA10mg - PQQVitamin B Complex without B6 (google for it) - just once a week.I notice some minor increase in twitching from it, but this is why I take Fri, Sat, Sun off. So I can evaluate its effect. The above is a mitochondrial / energy supplying supplement regimen. It seemed to help with my fatigue quite a bit.One day a week (HIGHLY RECOMMENDED)500mg Quercetin. No supplement has made me feel as good as this one. But taking it too often causes problems. Once, maybe twice a week maximum.I can not recommend Quercetin enough. It is a potent anti inflammatory and has a direct effect on my central nervous system calming down.These have been my discoveries for me.This is my regimen for food intake.Sometimes I cheat - have a stouffers meatloaf & mashed potatoes dinner, but that's not really cheating anyways. Its still totally Paleo. Its just not as healthy as organic.I started feeling better 3-4 weeks after I started this.I hope this helps someone. Thats truly my only hope here.-Burger-
 
Gustavo D Pimentel,corresponding author1,6 Thayana O Micheletti,2 Fernanda Pace,1 José C Rosa,3 Ronaldo VT Santos,4 and Fabio S Lira5Nutr J. 2012; 11: 22.Published online 2012 April 10. doi: 10.1186/1475-2891-11-22"This review highlights the relationship between the Gut-Central Nervous System axis and targets for nutritional therapies. For nutrition professionals, the Gut / Central Nervous System axis is considered an attractive opportunity, because foods may help to treat and prevent diseases. Nutritional therapies could modify the gut flora and may reach the Central Nervous System in order to modulate the food intake and inflammatory processes. Some nutritional therapies that are known to modulate the gut-CNS axis via physiological and molecular mechanisms are also discussed. Stimuli from gastrointestinal tract (GIT) influences brain functions, and messages from the brain may alter some GIT activities, such as motor, sensory and secretory. It was demonstrated that this link occurs via the vagus nerve to the brainstem, and via spinal afferents to the spinal cord. This evidences the correlation of the vagus nerve in the direct communication between the (gut) bacteria and the brain.Moreover, the serotonin (5-HT) levels and hypothalamic-pituitary-adrenal (HPA) axis may also participate in this connection. All connections are involved with modulation of infections and inflammatory diseases, such as obesity, type 2 diabetes mellitus, ulcerative colitis, Crohn's disease, as well as with behavioural problems and psychiatric disorders, such as cognition, mood, emotion, stress and anxiety.Since it is known that the microbiota is related to energy homeostasis, digestion of nutrients and metabolism, some low-grade inflammation-related diseases have emerged as an attractive opportunity for researchers. Recently, it has been shown that food rich in saturated or trans-fatty acids stimulates inflammatory markers. Several papers suggest that saturated fatty acids might enhance the blood LPS levels through GPRs, possibly secreted by gut cells, may affect the Central Nervous System and alter numerous central inflammatory markers.Higher levels of gut-related inflammation lead to ... activation of cytokines in the Central Nervous System. According to Pavlov & Tracey [75], the autonomic nervous system plays a key role in the control of the brain in moderating the immune system and inflammation.While microbes have been used to study the underlying mechanisms of inflammatory diseases and insulin resistance, numerous researchers have also stated that nutritional components could be used as a strategy to combat the gravity of these abnormalities. Historically, the Greek physician Hippocrates, "The father of medicine", reportedly said "Let your food be your medicine, and your medicine be your food".A higher risk of the development of cancer.... This is because the mechanisms by which intestinal bacteria induce carcinogenesis are thought to be via chronic inflammation, immune system evasion and immunosuppression. Conversely, the probiotics used have also emerged as an possible mechanism for the reduction of the pro-inflammatory status seen in cancer patients.The studies discussed in this review collectively support the emerging view that microbiota contribute to metabolic disease, and suggest that an impaired diet quality may promote the development of inflammatory diseases.And that was just result 1 on Google. -Burger-
 
Just giving an update to how my diet is going, I'm please to say that I feel about 65% better overall. I have had more and more good days with very few bothersome twitches, the ones that come don't stay and I haven't had a hotspot flair up for weeks. So far so good, I have started to add foods back into my diet such as mushrooms and oregano without issue. I am going to avoid nightshades a few more weeks and see how it goes. I have weaned down my sleeping pill use as well. I only have to take 5 mg of ambien to sleep now from the 15mg I used to take, and I'm completely off the anti depressants too! I hope with time I can eliminate the pills. I still have some twitching but I no longer fear that they will stay and I don't freak out when they happen. I am about 19 weeks since my initial onset of bfs and I hope that within e year I can get to a point where it doesn't bother me. Just stick with the diet even if you feel like its not helping because it take a long Time to fix. If yours was cause by nutrition then this will help you!
 
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
 
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.
 
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.
 
If anyone is interested in more of the science behind the Paleo Diet here is Loren Cordain's lecture on the topic. 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.
 
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.
 
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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