BandersnatchF
Well-known member
to name a few.
Autoimmune Diseases & BFS/BCFS
- Thread starter BandersnatchF
- Start date
ZekesTraveller
Well-known member
The point I was looking to make was covered. That is if BCFS is autoimmune then why does the drug of choice have no mention in the treatment of BCFS? The drug being Prednisone (sp.) Most of these are my mother, cousin, friend has this or that. Not many BCFS/BFS that I read have confirmed autoimmunity...so far!
I do like stevenpaulos inputs since he is attended by Dr. Hart. Why does Dr. Hart not prescrive immunomodulators....or maybe it is still being worked on. As to fibromyalgia....that is definitly coming of the Auto-immune list since it is now known that sleep disorders are the underlying cause. Of course what flipped the switch is another matter and may be autoimmune related.
If this is autoimmune related then it has a very diferent route of presentation that classical autoimmune diseases. It appears to have little overlap with other autoimmune diseases which is a fact when you have "other" autoimmune illnesses.
BFS/BCFS appears to me male dominated...another fact that sets it apart from the female dominated "common" autoimmune illneses sucha as those mentioned like Lupus, Sjogrens, RA etc.
Stevepaul if you are out there let us know what the latest is on this topic from Dr. hart!
I do like stevenpaulos inputs since he is attended by Dr. Hart. Why does Dr. Hart not prescrive immunomodulators....or maybe it is still being worked on. As to fibromyalgia....that is definitly coming of the Auto-immune list since it is now known that sleep disorders are the underlying cause. Of course what flipped the switch is another matter and may be autoimmune related.
If this is autoimmune related then it has a very diferent route of presentation that classical autoimmune diseases. It appears to have little overlap with other autoimmune diseases which is a fact when you have "other" autoimmune illnesses.
BFS/BCFS appears to me male dominated...another fact that sets it apart from the female dominated "common" autoimmune illneses sucha as those mentioned like Lupus, Sjogrens, RA etc.
Stevepaul if you are out there let us know what the latest is on this topic from Dr. hart!
EyeoftheWild
Well-known member
I take umbrage to that remark, Zeke. Please don't refer to my the enlightening beans I take daily as...meds. This is a serious insult to my friend Jack, who traded his mom's cow for these very "cool beans." Yeah, a bean stalk clear to the sky, but that's when you put them in the ground...Laugh heartily out loud now. Ingesting such beans takes you higher than any bean stalk, and you will see things that even scare the shyt out of giants. WOW. 
Ever eaten your way from inside a marshmallow out? Ever been eaten by a chocolate crocodile and then licked a hole in it and then crawled into a cococnut? Yeah, far out is right.
Beans, beans the magical pow
makes your psyche go zippity wow
The more you wow, the more you pow
Beans, beans the...hey, are those spiders coming out of my uvula?
Basso
Ever eaten your way from inside a marshmallow out? Ever been eaten by a chocolate crocodile and then licked a hole in it and then crawled into a cococnut? Yeah, far out is right.Beans, beans the magical pow
makes your psyche go zippity wow
The more you wow, the more you pow
Beans, beans the...hey, are those spiders coming out of my uvula?
Basso
beensuggested
Well-known member
Ok guys, I leave for a bit and then wow 
Ummm, well, polkas and chocolate crocodiles, never been fond of polkas or polka music but chocolate is good. Didn't mean to offend you Zeke by downplaying your concerns or need to do something, that was not my intent. I just hate to see people waste opportunity. I mean there are people who pass all their tests with flying colors and still worry about why they passed with flying colors and if the test was done correctly. I do have a very analytical mind and this condition is very frustrating to me and I hate the thought that this might just be forever, but if I spend too much time on that then I spiral back to dark nasty places.
So Basso...you just keep on, love the history and your redirection is a hoot
Zeke, I am sorry if I offended you but I do enjoy debates and sometimes being the devils advocate or sometimes just a devil
I am off to do some retail therapy as Friday I go to Disney World with my husband and kids
)
Have a lovely day boys and I will check in tomorrow
Kit
Ummm, well, polkas and chocolate crocodiles, never been fond of polkas or polka music but chocolate is good. Didn't mean to offend you Zeke by downplaying your concerns or need to do something, that was not my intent. I just hate to see people waste opportunity. I mean there are people who pass all their tests with flying colors and still worry about why they passed with flying colors and if the test was done correctly. I do have a very analytical mind and this condition is very frustrating to me and I hate the thought that this might just be forever, but if I spend too much time on that then I spiral back to dark nasty places.So Basso...you just keep on, love the history and your redirection is a hoot
Zeke, I am sorry if I offended you but I do enjoy debates and sometimes being the devils advocate or sometimes just a devil
I am off to do some retail therapy as Friday I go to Disney World with my husband and kids
)Have a lovely day boys and I will check in tomorrow
Kit
stevenpaulo
Well-known member
Zeke you posed questions and asked me to comment. I did this by regurgitating the findings of those who know far more about this disorder that we can ever hope to attain and none of this was manufactured to wind you up.
I have no doubt that you have some understanding of autoimmune diseases. I wouldn't class myself as having any because it's like I say, I'm just not that interested, in fact I'm only 324 posts in 2 ½ years - "interested" in the whole of this disorder and for the most part I don't particularly understand what I'm talking about.
Science, your right, eventually that's where the answers will come from not from the likes of me and you, we'll just supply the samples. Anaesthetic and stage 2 sleep regeneration, you've lost me again?
A group of BFS/BCFS people and a sleep disorder study would be required to ascertain whether there's any connection and I doubt anyone is going to investigate this possibility. Like it or loath it, the only thing they are looking at is the autoimmune connection as it's the only consistent finding. Personally I'd prefer this to be autoimmune otherwise your on your own as far as research goes.
I've heard before that autoimmune disorders go around in packs and it's there for all to read that PNH syndromes have associations with many, but I don't give much thought as to whether I might contract one. At the end of the day I don't know what life has in store for me, but should something else turn up I'll deal with it.
People have their own views and opinions as to the cause of this condition and the best way of managing it, this doesn't make anyone right or anyone wrong.
I have no doubt that you have some understanding of autoimmune diseases. I wouldn't class myself as having any because it's like I say, I'm just not that interested, in fact I'm only 324 posts in 2 ½ years - "interested" in the whole of this disorder and for the most part I don't particularly understand what I'm talking about.
Science, your right, eventually that's where the answers will come from not from the likes of me and you, we'll just supply the samples. Anaesthetic and stage 2 sleep regeneration, you've lost me again?
A group of BFS/BCFS people and a sleep disorder study would be required to ascertain whether there's any connection and I doubt anyone is going to investigate this possibility. Like it or loath it, the only thing they are looking at is the autoimmune connection as it's the only consistent finding. Personally I'd prefer this to be autoimmune otherwise your on your own as far as research goes.
I've heard before that autoimmune disorders go around in packs and it's there for all to read that PNH syndromes have associations with many, but I don't give much thought as to whether I might contract one. At the end of the day I don't know what life has in store for me, but should something else turn up I'll deal with it.
People have their own views and opinions as to the cause of this condition and the best way of managing it, this doesn't make anyone right or anyone wrong.
stevenpaulo
Well-known member
6thfloor4lane . In all honesty I have little knowledge as to what I've been tested for and the numbers involved. I just tend to let them get on with their job and guess that if there's something I should know they would tell me.
I know I've been checked for VGKC antibodies which came back negative. My thyroid function has been tested (obviously) but I can't give you any specific's. TSI, TSH I just don't know. I suppose I should ask just out of curiosity.
Here's something to ponder. When my neuro informed me I had the antibodies he contacted my GP to ask him to arrange for me to be evaluated by an endocrinologist. The results from the Endo where all normal i.e. no evidence of antibodies. When I questioned my neuro about this he said that different laboratories use different test procedures and I'm still showing antibodies at the lab that he uses. Fathom that one out. I guess nothing is black and white.
If I do ask for the results of tests I've had I will let you know the numbers
I know I've been checked for VGKC antibodies which came back negative. My thyroid function has been tested (obviously) but I can't give you any specific's. TSI, TSH I just don't know. I suppose I should ask just out of curiosity.
Here's something to ponder. When my neuro informed me I had the antibodies he contacted my GP to ask him to arrange for me to be evaluated by an endocrinologist. The results from the Endo where all normal i.e. no evidence of antibodies. When I questioned my neuro about this he said that different laboratories use different test procedures and I'm still showing antibodies at the lab that he uses. Fathom that one out. I guess nothing is black and white.
If I do ask for the results of tests I've had I will let you know the numbers