Updates on BFS Symptom Control

[gmdaveGoDaddy]

Dear all,Updates @ 23.04.2008 are in Blue font.Please visit again, I will try to update you every few weeks.I would like to tell you about my experience with BFS and symptom control.English is not my mother tongue. I apologize for any mistake.ATTENTION!THE INFORMATION IS MY STORY AND EXPERIENCE. IT IS NOT A RECOMMENDATION FOR TREATMENT AND NOT A MEDICAL ADVICE.YOU MUST CONSULT YOUR PHYSICIAN BEFORE YOU DECIDE TO TAKE ANY MEASURE OR TAKE ANY MEDICATION OR SUPLEMENT.ANY MEDICINE OR SUPLEMENT THAT HELPED ME CAN DAMAGE YOU.IF YOU DECIDE TO TRY ANYTHING, YOU DO IT ON YOUR OWN RESPONSIBILITY. I am a white Jewish male living in Israel. I am in my thirties.It all started about 18 months ago, when I first felt fasciculation early in the morning.Later I also had change in the gait and strange feeling on the skin for short periods.As some of you I was afraid of ALS and MS. I saw three neurologists and had two EMGs tests. The EMG were find, and the last neurologist, a known neurologist, told me it’s most probably benign fasciculation.I noticed the following exacerbating factors:1. Eating sweets or any sugar containing food seems to cause fasciculations after a few hours.2. Drinking Grafruit juice (and maybe also other citrus drinks) caused me fasciculation after a period of time.3. Drinking coffee with caffeine caused exacerbation.I tried about 50 different kinds of medicines and supplements, most caused exacerbation or no reaction.The following measures helped me to reduce dramatically my symptoms:I discovered the measures in the following order. The order may be important because of synergistic effect1. I eat no sugar or sugar containing food, and drink no coffee.2. I don’t drink citrus juice, especially not grapefruit juice.3. I take 50mg to 75mg of R-lipoic acid per day in the morning (50mg) and somtimes also in the evening (25mg) with food. When I used higher amounts of lipoic acid it caused exacerbation of fasciculations!!! 4. Minocycline* (An antibiotic under prescription) seem to help me with the strange skin feeling and the gait. I started with 100mg a day for few weeks, reduced to 50mg every other day with the same effect for me. After about 3 month, I stoped taking minocycline, except for few days in exacerbations. It seems that the effect is preserved. Again I remined that I started taking the R-lipoic acid before the minocycline, and I don't have experience with minocycline without R-lipoic acid. 5. I tried drinking about 0.5liter of tomato juice a day (it contains lycopene, an antioxidant) with some effect to me.In addition, It seems that two more things may be helpful (I am not sure about these steps):Controlling sleep (not to sleep too much) and sleeping with a light in the room.Drinking small amount of Sugarfree Red-Bull.I tried to buy some of the ingredients of the Red-Bull without the drink, but didn’t found (yet) the exact ingredient that seem to cause improvement. I didn’t try any other energy drink.BE CARFULL: Minocycline in ALS may cause damage!I estimate that all this measures reduced my fasciculation by at least 80% and almost eliminated all the other symptoms.You are invited to comment and share your opinion and own experience with me.Take care…*I started taking minocycline because of scientific evidence it has neuroprotective effect in some neurological disease (But it may worsen ALS). For some preliminary details look @

 

[pizzatana]

Well, that is in detail (except red bull the things I noticed!Caffeine, Sugar, Citrus fruits. And especially some (not self-made) "cake"-like things with some special chemical ingredients.Try also magnesium, even if your blood level is fine. You might have to get used to it (stomac problems), but you can easily take 3x 300mg a day and it calmes down to 50% after 1-3hrs.Especially the sugar-issue made me think of something like a hidden fungus or bacteria. More than one time. This also could explain the aid of your antibiotics.

 

[abraxas]

Good advice, I think. I, too, made the observation that sugar makes my symptoms go worse, especially the cramping and stiffness. Also, I'm entirely caffeine intolerant. Even extremely small amounts cause massive anxiety and twitching in me. I don't know about the citrus fruit, though. I did a diet recently and upped my intake of fruit (bananas, oranges, apples and grapefruit, mostly) while at the same time lowering my refined sugar intake. Not only did the cramping get better, my concentration also improved and the mind-fog cleared. I also have to say that I don't have diabetes. I find I can live with most of the symptoms as long as I eat a half-way healthy diet and exercise regularly.dawiz

 

[Whistler183]

My comment is in reference to your minocycline use. I was on it for acne 17 years ago. I was on it for a prolonged period of time (over a year). The medication almost killed me. I ended up getting drug related lupus (cured now) which caused my joints to swell and skin to hurt to the touch. I could not get up and could barely move. It was very debilitating. This medication needs to be monitored carefully for liver damage. I am new to this site and have never posted. I shuddered when you mentioned minocycline. It took me a year to recover from the damage it caused me. As far as symptom control, Magnesium works well. I also use L-Taurine and B vitamins. L-Taurine is an anti-seizure amino acid. Anyway, thanks for your experience. I never withheld citrus. Worth a try!

 

[FooRyder7]

The ingredient is Red Bull that might help is taurine - thats one of the main ingredients in energy drinks. Interesting.

 

[DonJose]

HI all. I have also eliminated caffeine and most sugar and have noticed that citric acid makes twitches worse. Wonder what the citric acid connection is? hmm...LInda

 

[AllGoodHere]

I'm new on this forum but have been watching for a few months. It is good to see that others are experimenting with natural remedies and I'm not out there all by myself feeling a bit naive in this approach. I will try some of the supplements listed : taurine, cocoa nibs (magnesium), and glucosamine for soreness (although I've taken it before for joints that act up from old injuries and it seemed to help).It makes sense that diet will help as I, and others I know with this disorder, have found a few negative dietary links just by noting flare-ups. One thing that I have been avoiding for a time is beer, wine and dark liquors as they definitely cause me problems. I recently learned that congeners, by-products of fermentation, are much more numerous in darker liquors and red wine than in light liquors (vodka, gin). Some of these congeners are slightly toxic and are in part responsible for monster hang-overs. With this in mind I decided that my reaction to Asian food when I eat out may be set off by fish sauce (a fermented product) and found this to be true for me also. Even though this is all very linear thinking I wanted to share it with you all and see if any of you had noticed a similar response. Who knows, our systems might just be susceptible to this stuff now whereas before getting this disorder our bodies could deal with a small amount of toxicity.My twitching has pretty much gone away now that I'm on a low dose of gabapentin but the cramps persist and seem to get really bad occasionally. Really bad as in causing sprains, dislocations, etc. Another thing that helps me much of the time when I can do it is meditating. I've gotten pretty good at it in that I can now get into meditation easily and can do 10 minute sessions that work. If it's possible to meditate (not in the middle of work, driving, etc.) then I can get rid of the cramping. I also find that doing ROM (range of motion exercises or gentle circular movements often used in warm-up exercises) helps with both twitching and cramps but when I'm feeling very bad it is very hard to do these. Nice that both these methods are free and have no side-effects. Well, I guess you'd have to learn how to do them first and that may cost you something, but afterward you can practice on your own.In regard to the sugar intake making symptoms worse, a physical therapist/herbalist told me that too much sugar can cause your defense systems to become ineffective and there have been some trials that have shown a correlation between decreased sugar intake and increased resistance to viruses. So, if you accept the line of thought that BFS/CFS is brought on by a virus or infection that causes your neural to muscle switches to malfunction, then that would follow. It's maddening isn't it that we are guessing at so much of this? We have so little science behind us; if dietary links could could be found that also cured baldness, overweight, and wrinkles we wouldn't have this problem. Ah, well. Hope some of these ideas help someone and I've haven't gone on and on for no reason.