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

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Postby stevepaul on March 22nd, 2005, 4:31 pm

Sorry Stephanie I read it wrong, my mistake.

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Postby Stephanie on March 22nd, 2005, 4:43 pm

No problem
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autoimmune

Postby eric on March 22nd, 2005, 7:22 pm

steve paul there are anibodies that produce autoimmune reactions, some doctors here are using ivig in the blood to confuse the immune system into not attacking , i would look this up as it is up and coming..
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Postby stevepaul on March 23rd, 2005, 8:20 am

Eric.

From what I’ve read this type of treatment has been tried with PNH patients but the results where not conclusive enough. Initially the symptoms are reduced, only to return shortly after. However, this procedure can be helpful in so much as, if the symptoms are reduced, this would further indicate an immune origin.

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Postby Stephanie on March 23rd, 2005, 10:51 pm

Not sure, but my brother may have used this to treat his ms-very expensive.
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Postby Ish on March 28th, 2005, 1:33 pm

As a syndrome with some signs and symptoms but a lot of uncertainty as to the underlying physical triggers and mechanisms I think we should stay open as to the possibilities, related conditions, etc.. Eric can certainly be a little relentless with his message, but I have to say I think he is right about the appropriateness of the topic.

And, like Stephanie (I think it was) our tolerence, even support of, those people whose problem is not their BFS, but their fear-of-*** is significant here. We don't send them packing to a more appropriate list (e.g. health anxiety, OCD, etc.) -- but in fact welcome them heartily. Even though it means that those of us who have BFS but not fear-of-*** have to plough through all the messages of iterated fear and comfort looking for BFS-specific discussion. I don't mind though; early on I had a few weeks of fear-of-*** myself and this list *was* a comfort back then.
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Postby amy_twitch on March 28th, 2005, 10:08 pm

Great post Ish,
Amazing how much comfort we've all found here. No one should ever be sent packing (except the posers of course). It is very helpful to learn about anxiety too. I often suggest anxiety boards to people, but not with the intent of sending them away from this board. Rather it's usually an alternative to them looking on neuro boards for reassurance they don't have 'it'. I'd much rather see all of us stay on this board--all thoughts, ideas, and experiences out on the table--since that's the only way to delve into this bugger of a condition. I agree that we need to stay open to all possibilities.

Heck, we all could be suffering from nausea instead. What causes that? Could be many things from the flu, pregnancy, abdominal migraine, salmonella, pancreatic problems, stomach ulcers...and many more. All are very different root causes--yet they ALL somehow trigger the same vague symptom of nausea.

There could be many different root causes for all of us, be it a virus, drug reaction, stress, autoimmune issue, lyme and others....all triggering (somehow) the symptoms of BFS. The only difference is that BFS is diagnosed by exclusion of other stuff. It doesn't really have a tangible feel to it I guess (like the link between pregnancy and nausea)...and that's what's so frustrating.

All stories and experiences welcome here! I just wish we could nail it down so it seemed more tangible.

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