Vitamin D

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Re: Vitamin D

Postby aztwitchy on February 19th, 2013, 4:48 pm

TwitchyNate wrote:Guys...something else to consider. I would never have imagined this but I've read many posts on this forum that say they took the fluoroquinolone Cipro when they began noticing muscle twitches. I took Cipro for two straight weeks which ended right before December 2012. Cipro has many very bad effects on my mood and metal state. I get very depressed and fall into despair. I went back and I told my doctor I was not completely well (have chronic prostatitis) but could not handle the Cipro any longer. I followed up with 2 weeks of doxycycline. A week and a half later is when my doctor said I had low T and low everything else. I believe is was within this time frame when my twitching started. I know my muscles were aching during this time. I'm also beginning to wonder if the Cipro was what triggered all of this or maybe the prostatitis infection or the flu that I was experiencing prior to that. My legs began aching with the flu I had in November and lasted through to when I went to the neuro on January 28. Is it possible my BFS is viral related? Cipro related? Doxycycline related? Tamiflu related? Can something like this get in the muscles and stay that long? Could that have been the cause of my deficiencies in vitamin D, Calcium, and testosterone which in turn causes the BFS. Wow...just a lot of factors here.


yeah cipro and doxy are both common on here as starting points...

everything for me started after doxycycline....

i was into my third week of doxy for a skin thing when it all went downhill fast. muscles spasms, burning hands and feet, severe joint pain, insomnia, nerve parathesias in arms and legs, etc, etc, etc...

muscle twitching came later and hasn't gone away.
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Re: Vitamin D

Postby TwitchyNate on February 19th, 2013, 7:17 pm

Interesting. I found a website where a doctor commented that Fluoroquinolones would cause numbess, tingling, muscle spasms, muscle twitching, muscle aches, muscle pain, and muscle weakness and it could last long after the meds are stopped. I know it had a very bad effect on me as far as depression and feelings of doom. I stayed in the house for a week (luckily it was Thanksgiving week and didn't miss work). I've taken Cipro before and it depressed me but I don't remember it doing all this to me; however, years ago, I had a lot of twitching and muscle aches come to think of it right around the same time I had another bout of prostatitis which I would have taken Cipro for so yes, that was probably the trigger for my twitching then. It could have been the trigger for my twitching now.

Man, I'm really fighting achy leg muscles today too. My legs are really bothering me today. I'm hoping it is from working out yesterday. I have been pushing hard over the last two weeks. Feels like the muscles are stiff, sore, and tight.
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Re: Vitamin D

Postby BFSBurger on February 19th, 2013, 8:25 pm

If you mean pushing hard at the gym, don't do that. When you have this condition, you really should only exercise to refresh and invigorate yourself. I really don't believe you should go past that stage. That's my own personal opinion based on five months of this stuff.
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Re: Vitamin D

Postby aztwitchy on February 20th, 2013, 12:25 am

BFSBurger wrote:If you mean pushing hard at the gym, don't do that. When you have this condition, you really should only exercise to refresh and invigorate yourself. I really don't believe you should go past that stage. That's my own personal opinion based on five months of this stuff.


I agree with burger and this has helped me tremendously getting my bfs down by 80percent....what I would call real bfs....body wide twitching for 3+ months ...... You don't want to be creating too much oxidative stress as that is probably a factor that got us into the situation we are in....light workouts is the way to go to keep the system calm and keep immflamation down...keep joints and muscles loose. They are what Ghayes called grandma workouts...give your body time to heal
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Re: Vitamin D

Postby 6t5frlane on February 20th, 2013, 8:46 am

TwitchyNate wrote:Guys...something else to consider. I would never have imagined this but I've read many posts on this forum that say they took the fluoroquinolone Cipro when they began noticing muscle twitches. I took Cipro for two straight weeks which ended right before December 2012. Cipro has many very bad effects on my mood and metal state. I get very depressed and fall into despair. I went back and I told my doctor I was not completely well (have chronic prostatitis) but could not handle the Cipro any longer. I followed up with 2 weeks of doxycycline. A week and a half later is when my doctor said I had low T and low everything else. I believe is was within this time frame when my twitching started. I know my muscles were aching during this time. I'm also beginning to wonder if the Cipro was what triggered all of this or maybe the prostatitis infection or the flu that I was experiencing prior to that. My legs began aching with the flu I had in November and lasted through to when I went to the neuro on January 28. Is it possible my BFS is viral related? Cipro related? Doxycycline related? Tamiflu related? Can something like this get in the muscles and stay that long? Could that have been the cause of my deficiencies in vitamin D, Calcium, and testosterone which in turn causes the BFS. Wow...just a lot of factors here.


You can include Leviquin in this as well. Same class of medicene
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Re: Vitamin D

Postby WeAreTheCosmos on April 15th, 2013, 7:17 pm

My vitamin D came back at something ridiculously low, like 8 or so... And that was after suffering for 2 years without a diagnosis. I guess Canadian government health care doesn't cover D checks in regular blood work, I had to ask the doctor to check it. Until then, the only abmormality in my blood work was a slightly elevated creatine
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Re: Vitamin D

Postby englishdave on April 28th, 2013, 8:55 am

Pardon if tthis has already been discussed here... but has anybody had there vitamin E level chexked? Ive recently been told I am vit e deficitient. The possible symptoms of this can include neuropathy and other neurological type symptoms. ..
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Re: Vitamin D

Postby sibelius on May 24th, 2013, 10:04 am

I think there may be a link with Vitamin D as well. I have been hypothyroid for years and got pretty sick via a case of Giardia. For several years I had absolutely no energy (even after heavy dosing of Cipro and other antibiotics got rid of the parasite). I got tested for vitamin D and found I was very low (13). I went on high dosage of vitamin D and my energy level eventually improved (it did take a while - no overnight cure). However, this is when the twitching occured. I have noticed that when I dropped dosage from 5000IU per day to 2000IU (after having raising my vitamin D levels to the high 50's) my twitching lessened in frequency (but did not go away). I think Vitamin D is absolutely needed but my personal finding is that when you are in the normal range you may want to try reducing dosage to see how you react.
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Re: Vitamin D

Postby aztwitchy on May 24th, 2013, 11:23 am

sibelius wrote:I think there may be a link with Vitamin D as well. I have been hypothyroid for years and got pretty sick via a case of Giardia. For several years I had absolutely no energy (even after heavy dosing of Cipro and other antibiotics got rid of the parasite). I got tested for vitamin D and found I was very low (13). I went on high dosage of vitamin D and my energy level eventually improved (it did take a while - no overnight cure). However, this is when the twitching occured. I have noticed that when I dropped dosage from 5000IU per day to 2000IU (after having raising my vitamin D levels to the high 50's) my twitching lessened in frequency (but did not go away). I think Vitamin D is absolutely needed but my personal finding is that when you are in the normal range you may want to try reducing dosage to see how you react.


there for sure is a tie in. the most vit D I can take in is 1000iu and I have to take it at night. I think a lot of us definitely have some dysfunction in the vitamin D regulator. Another theory i had is it could be potentially other ingredients in vit. D supplements. The liquid form i was using had trace minerals also in it and could have been an issue.

I would be curious to know what brand\type of vit d you all are using that notice it causes worsening of symtpoms.
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Re: Vitamin D

Postby sibelius on May 24th, 2013, 8:36 pm

aztwitchy wrote:
sibelius wrote:I think there may be a link with Vitamin D as well. I have been hypothyroid for years and got pretty sick via a case of Giardia. For several years I had absolutely no energy (even after heavy dosing of Cipro and other antibiotics got rid of the parasite). I got tested for vitamin D and found I was very low (13). I went on high dosage of vitamin D and my energy level eventually improved (it did take a while - no overnight cure). However, this is when the twitching occured. I have noticed that when I dropped dosage from 5000IU per day to 2000IU (after having raising my vitamin D levels to the high 50's) my twitching lessened in frequency (but did not go away). I think Vitamin D is absolutely needed but my personal finding is that when you are in the normal range you may want to try reducing dosage to see how you react.


there for sure is a tie in. the most vit D I can take in is 1000iu and I have to take it at night. I think a lot of us definitely have some dysfunction in the vitamin D regulator. Another theory i had is it could be potentially other ingredients in vit. D supplements. The liquid form i was using had trace minerals also in it and could have been an issue.

I would be curious to know what brand\type of vit d you all are using that notice it causes worsening of symtpoms.


I've used about 5 or 6 different brands and have not noticed a difference between them. I've continued to twitch on all of them for 2.5 years. The only pattern is I twitch more when I was on 10000IU then 5000IU and now at 2000IU I am twitching even less (but it has never stopped). I am sort of hesitant to drop below 2000IU because I believe there are many positive health benefits to vitamin D and my BFS anxiety has gotten much less over time. However, I may experiment dropping all supplements in June, July, August and see how I feel just getting Vitamin D thru more sun exposure.
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Re: Vitamin D

Postby BFSBurger on May 27th, 2013, 11:22 pm

I was like you. "Must do vitamin D!". But the simple fact is, when I completely stopped taking it, my twitching took another skydive. I thought I could handle 2000 a day, but now I take zero. And my body thanks me for it. You need to remember that vitamin D is a steroid. It's going to enhance immune activity to some degree. But I also see the possibility that we have some sort of vitamin D receptor dysfunction. Which may be why we are lower than normal. For example, I went outside and got 20 minutes of sun religiously every single day for two months, then tested myself. I was only at 30. That's ridiculous. I should have been at 60. I think the best thing you can do is make sure you get sunlight. You can also go to a tanning bed, and request a bed that only does UVB rays. That will boost your vitamin D naturally, without the supplements. I no longer can take supplements for vitamin D. Try going off of it for a week. You aren't going to die. See what happens. Betting things calm down. The way I look at it, this BFS thing isn't forever so I can take a break from Vit D for awhile if doing so calms my system.
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: Vitamin D

Postby sibelius on May 28th, 2013, 11:44 pm

BFSBurger wrote:I was like you. "Must do vitamin D!". But the simple fact is, when I completely stopped taking it, my twitching took another skydive. I thought I could handle 2000 a day, but now I take zero. And my body thanks me for it. You need to remember that vitamin D is a steroid. It's going to enhance immune activity to some degree. But I also see the possibility that we have some sort of vitamin D receptor dysfunction. Which may be why we are lower than normal. For example, I went outside and got 20 minutes of sun religiously every single day for two months, then tested myself. I was only at 30. That's ridiculous. I should have been at 60. I think the best thing you can do is make sure you get sunlight. You can also go to a tanning bed, and request a bed that only does UVB rays. That will boost your vitamin D naturally, without the supplements. I no longer can take supplements for vitamin D. Try going off of it for a week. You aren't going to die. See what happens. Betting things calm down. The way I look at it, this BFS thing isn't forever so I can take a break from Vit D for awhile if doing so calms my system.


Thanks for relaying your experience. I think a trial of a week or two without supplements is worth a try. The Vitamin D receptor theory does intrigue me. I've bounced between low vitamin D (had symptoms that some Dr's thought was fibromyalgia) and high supplementation (tons of energy but often insomnia, anxiety & BFS). Need to find that happy medium.
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Re: Vitamin D

Postby BFSBurger on May 29th, 2013, 7:27 am

My buddy got me on the Vitamin D kick a month before my BFS started. Its funny how literally I made 500 major lifestyle changes before my BFS started. But one of them was my buddy telling me to go on 5,000 to 10,000 IU per day because its "safe". So i did ... and things (coincidentally or not) took a major turn for the worse within a month or two of that point. Probably unrelated, but if we are dealing with a sensitive immune system that is hyperactive, it was a bad idea to take so much Vitamin D.

Definitely do 2 full weeks with zero supplements. Not even fish oil. Not even a multivitamin. Watch what happens. And please report back.

PS: this also means no pasta / noodles / pizzas / breads / gluten.

If you only do the first thing, but not the second set of things, I can't guarantee any results lol.

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Re: Vitamin D

Postby Spider on June 15th, 2013, 2:27 am

BFS BURGER

I also started a healthy eating plan supported by high dosage vitamin and mineral supplement .

(Google berocca vitamins).

Then low and behold these BFS symptoms started not long after .

I think your on to something there BFSBurger.

Interesting stuff .
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Re: Vitamin D

Postby muppetdog on June 18th, 2013, 4:37 pm

I also had lowish Vit-D (26). I have been supplementing for a month with 4000 UI. It has neither increased or decreased the twitching. So I am not sure it's rock solid that Vit-D causes more twitching. lets not practice too much pseudoscience ;)

The F-ing leg/foot/hand buzzing has gone down though.

For me taking too much vitamin X (Xanax, that crap is poison!!) causes more twitching and buzzing. Oh, and too much vitamin C (cupcakes) causes more symptoms. Not taking vitamin L (laying around on the couch) has seemed to decrease my symptoms as of late.

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