Donating Blood

Information about how to manage or reduce the severity of BFS symptoms

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Donating Blood

Postby GotTheTwitchies on May 20th, 2015, 9:33 am

I had a variety of the standard BFS symptoms... including getting anxious (with worse symptoms) thinking I had ALS. In roughly the same timeframe, it was discovered that the iron (specifically "ferritin") levels in my blood were high... not at the level of hemachromatosis, but at the level of someone who'd taken multivitamins for far too long. (They have a lot of iron; it's one of the main differences between standard and "silver" versions.) The cure for high iron is... well... bleeding and, since I don't have hemachromatosis (per the test), the cheapest safe way to bleed is to donate blood. I've been a regular donor now for a couple of years... well on my way to my "2 gallon" badge.

But a funny thing happened on the way to the blood bank... or actually on the way home: I stopped twitching. More specifically - I noticed that the twitching was much reduced in the days after a donation... and that the number of days of relief increased with each subsequent donation. Now, I find that I get 6-7 weeks of highly reduced BFS symptoms post-donation. In fact, I can tell that I am coming up on a donation by the level of symptoms I experience, without looking at a calendar. My goal is to get 8-9 weeks, since donations are at least 8 weeks apart.

What this tells me is that one or more of the following is true:
1) My BFS is getting better of its own accord. Probably true, although unlikely that it would correlate with the blood donations.
2) There's something in my blood that causes or aggravates the BFS. Donate and the levels of whatever it is go down, and then it builds up over time until the next donation. Iron is a likely candidate, since most of it is stored in tissues and not circulating all the time, but it could be anything that the body stores.
3) It's all in my head. We all know BFS is related to stress hormones, etc.

I am curious if others have seen a similar effect:
Are you a regular blood donor? Have you seen a similar correlation to improved symptoms?
Have you given blood ever and seen the symptoms reduced? Do you know your iron/ferritin level?
Would you give it a try? Find a blood drive and donate... and then report back.

I am not a shill for the Red Cross - this worked for me and I hope it works for you. And I hope you will let us all know if it did/didn't.
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Re: Donating Blood

Postby crotwich on May 20th, 2015, 9:50 am

Interesting. I personally never donated blood after the onset of BFS, but will sure do that. :) BTW, just a few hours ago I posted that my blood test results (among other things) also showed elevated ferritin (viewtopic.php?f=3&p=162421#p162421).
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Re: Donating Blood

Postby GotTheTwitchies on May 20th, 2015, 10:37 am

I am glad my post may be helpful to you.

I am not a doctor - you've got a lot more blood levels out of range than I did. (Not sure I was tested on B12, but creatine for sure was OK for me.) Be sure to discuss any vitamins/supplements you may have been taking with a doc. Remember, my iron problem is mostly attributed to taking multivitamins with 100% RDA Iron, for years.

Note also that Iron at high levels is toxic. My hypothesis on me is that my high iron levels were not high enough (yet) to have caused organ problems (liver or kidneys), but high enough to be mildly neurotoxic... creating the BFS. Be sure your doctor considers Iron (or other things from supplements, like B12) as a cause (of BFS or CKD) rather than an effect.
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Re: Donating Blood

Postby Rainyjane on October 11th, 2015, 8:22 am

I remember a case like this on a BFS board 15 years ago approximately! Hers were cured but she gave PLASMA, which is a step up. I remember it was like giving blood but more hard core, like the next step up. I went in and gave blood and nothing happened.mi was on my way to building up to be able to give plasma through their routes. I never did though.
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Re: Donating Blood

Postby GotTheTwitchies on October 11th, 2015, 9:43 am

That's very interesting. Giving plasma does not reduce the iron in your body (beyond the tiny bit dissolved in the plasma as part of ferritin). If it worked for that person, then the BFS was correlated with something in the blood, not iron. I give whole blood, which includes red blood cells and therefore a lot of iron... but also plasma. I do feel like my BFS is related to something in the blood, but I always thought it was the iron.

Update on my status: I've given 12 pints since I started this regimen... and given up on daily vitamins. My iron levels... checked just a few weeks ago... are well down into the normal range. My BFS has mostly subsided. I still know it's there most of the time, and I have bad days where it's noticeable, but I have not had more severe symptoms (e.g., thumpers) in a long while. In any case, with the iron levels now normal, I may consider plasma donations instead. Thanks for the idea!

As always: correlation is not causation. Maybe giving blood helped or maybe it was just contemporaneous with a reduction in symptoms that was already occurring... or maybe the feeling of being proactive (of doing something or anything) reduced stress which reduced symptoms. I'll never know and I don't really care - I feel better and I've done some good for others while I was doing good for me. Can't beat that!
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Re: Donating Blood

Postby Rainyjane on October 12th, 2015, 6:12 pm

Yeah, give it a try. She claimed she was completely cured. People started bugging her, asking a lot of questions, and she kind of became a BFS forum celeb! Lol. That was back in probably more like 1997! :)
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Re: Donating Blood

Postby Rainyjane on October 12th, 2015, 6:16 pm

Another also... You're not the only one I've seen that claimed giving blood helped. I've seen quite a few posts like this through the years, if memory serves. I think it's very good for men to give blood anyway as they don't have periods and blood isn't regenerated!
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Re: Donating Blood

Postby RachelLee on March 15th, 2016, 2:10 am

Huh, what an interesting concept. :shock: I *should* be donating blood, as my blood type is O-, and it's typically in demand because it's a rarer type, and also, the fact that all people with O- blood can ONLY receive O- blood, no other type. But, problem is that I only weigh 105-107 lbs. on average (Yeah, I'm the true definition of a lightweight...and it's not cause I starve myself or anything, I eat plenty, I'm just on the lean and tall side, it's not like I'm malnourished! :lol: ) and they won't let you donate blood if you're under a certain weight.
"For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind."
2 Timothy 1:7
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Re: Donating Blood

Postby GotTheTwitchies on March 15th, 2016, 7:05 am

As a younger woman, you are less susceptible to having too much iron. Instead of donating blood, you can simply monitor your intake closely and let nature take its course to reduce the iron in your system. Do check food labels - you would be surprised by both the amounts and variation in "fortification" in many products. For instance, Multigrain Cheerios have a lot more iron than Honeynut. Also check any daily multivitamin you might take - many of these have 50-100% RDA iron... though the "silver" versions have none. And :( reduce your intake of beef.

After almost 3 years of the low-iron regimen, I am finding improvement. However, I have started to have symptoms of mineral deficiency... apparently magnesium, manganese, zinc, and selenium... leading to leg cramps. I am now testing supplementing those while avoiding iron.
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Re: Donating Blood

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