Aa
seafood/beach walks and Liver disease/ Vibrio vulnicus
here's more info on the reason raw seafood/shellfish and even ocean water can be dangerous to liver patients, especially those with high iron levels.
http://www.ebi.ac.uk/2can/genomes/bacteria/Vibrio_vulnificus.html
http://www.ebi.ac.uk/2can/genomes/bacteria/Vibrio_vulnificus.html
point well taken....it's a hard call as to how to put things out there...
and here I thought I was going easy because I didn't even mention the 2 other bacterium they've also discovered affect us differntly than JohnQP
it's also possible to know who will react better from a long winded cautiosly worded post vs. just the facts jack. If someone wants to alert me...I prefer they just say it....not leave me wringing my hands knowing bad news is coming....but thats me..
at this point...it helps me to get my duck in a row if people are just informational on stuff like this.
You know, this place really scared me a first too..as it did you...most of us really...
and as info get more vast there will be more that's hopeful, and more that's scary...it kinda comes with the doubling of medical knowledge every year now.
It is BOUND to get scarey for everyone....yet I would rather see there be a specific post on say, watching iron, or how to regulate ammonia than to have not known about it and read it buried in the third paragraph of some other thread I was about to quit reading.
I've already added more links to my LINKS in Health pages...perhaps I'll add this info there as well.
my tone has been suffering lately from some serious exaustion and no procrit to help it.
trying to keep it light while in the throws of Riba induced gelatinous decomp is always such fun!! Maybe I'll go back to my knitting, at least there if I drop a stitch it's not to someone elses unraveling. : ))
I think the best thing for newbies is just to take it in slow steady bites.
Other forums have lots of personalities but a quarter as much useful information.
this is the place to get seriously educated...but it does come at an emotional cost to all of us.
Not sure how you can mitigate that unless you create a "deep space nine" not for newbies area (which I only half jokingly suggested a while back) but, even there, as someone pointed out, the most seemingly benign thread can morph into a serious and convoluted biology lesson....and there's no way to really protect newbies from reading stuff that may be upsetting or confusing unless we stop discussing the disease and what we are all learning, which is the point.
MY advice to newbies is to go slow the first couple months because your mind needs time to adjust and go through a grieving process..and time to adjust to all the changes that are coming. Usually there is time between diagnosis and biopsy/tx..so there is time to slowly take in info and not get overwhelmed if you pace yourself.
Yet they do need info about treatment, blood test, possibly toxic drugs and herbs...etc.
Some of these things are helpful to learn early and can effect treatment outcomes as well as immediately improve quality of life.
At some point people decide whether to support with lots of encouraging words, or lots of useful info....hopefully we will all learn to find that delicate balance and each fulfill their own purpose and giftings within the group.
If someone get frightened by the breath or depth of info, there is always yahoo and some other places where they are less likely to hear about their heme, or vulcunis, or occult C, or anything else very disturbing/slash informative for that matter.
MB
and here I thought I was going easy because I didn't even mention the 2 other bacterium they've also discovered affect us differntly than JohnQP
it's also possible to know who will react better from a long winded cautiosly worded post vs. just the facts jack. If someone wants to alert me...I prefer they just say it....not leave me wringing my hands knowing bad news is coming....but thats me..
at this point...it helps me to get my duck in a row if people are just informational on stuff like this.
You know, this place really scared me a first too..as it did you...most of us really...
and as info get more vast there will be more that's hopeful, and more that's scary...it kinda comes with the doubling of medical knowledge every year now.
It is BOUND to get scarey for everyone....yet I would rather see there be a specific post on say, watching iron, or how to regulate ammonia than to have not known about it and read it buried in the third paragraph of some other thread I was about to quit reading.
I've already added more links to my LINKS in Health pages...perhaps I'll add this info there as well.
my tone has been suffering lately from some serious exaustion and no procrit to help it.
trying to keep it light while in the throws of Riba induced gelatinous decomp is always such fun!! Maybe I'll go back to my knitting, at least there if I drop a stitch it's not to someone elses unraveling. : ))
I think the best thing for newbies is just to take it in slow steady bites.
Other forums have lots of personalities but a quarter as much useful information.
this is the place to get seriously educated...but it does come at an emotional cost to all of us.
Not sure how you can mitigate that unless you create a "deep space nine" not for newbies area (which I only half jokingly suggested a while back) but, even there, as someone pointed out, the most seemingly benign thread can morph into a serious and convoluted biology lesson....and there's no way to really protect newbies from reading stuff that may be upsetting or confusing unless we stop discussing the disease and what we are all learning, which is the point.
MY advice to newbies is to go slow the first couple months because your mind needs time to adjust and go through a grieving process..and time to adjust to all the changes that are coming. Usually there is time between diagnosis and biopsy/tx..so there is time to slowly take in info and not get overwhelmed if you pace yourself.
Yet they do need info about treatment, blood test, possibly toxic drugs and herbs...etc.
Some of these things are helpful to learn early and can effect treatment outcomes as well as immediately improve quality of life.
At some point people decide whether to support with lots of encouraging words, or lots of useful info....hopefully we will all learn to find that delicate balance and each fulfill their own purpose and giftings within the group.
If someone get frightened by the breath or depth of info, there is always yahoo and some other places where they are less likely to hear about their heme, or vulcunis, or occult C, or anything else very disturbing/slash informative for that matter.
MB
I think that it is great to have someone release information others might not be aware, but it is important to do so considerately and carefully. I do think your tone is many times alarming and not positioned in a balanced fashion, this is not true of you all the time. It is important to realize how overwhelming and alarming this entire process is for everyone and be considerate in your communication of information. I try and remember that myself.
I think the point is not to scare everyone, but to alert people to possible dangers they do not know exist.
as liver disease progresses the chance of having a toxic reaction to raw shellfish goes up substantially.
also, if one's iron levels go above normal, regardless of disease stage, the risk again goes up considerably.
that means those on tx should definitely be alert to the danger and maybe avoid shucking oysters?? Hello??
personally speaking, at stage 3/4 I'm glad to now have this info and will tailor my beach trips to be more cautiously conducted rather than to let one exposure be the undoing of many years of fighting for life.
But then, some of us want to know if there are sharks in the water...and some prefer not to know.. to each his own..
mb
as liver disease progresses the chance of having a toxic reaction to raw shellfish goes up substantially.
also, if one's iron levels go above normal, regardless of disease stage, the risk again goes up considerably.
that means those on tx should definitely be alert to the danger and maybe avoid shucking oysters?? Hello??
personally speaking, at stage 3/4 I'm glad to now have this info and will tailor my beach trips to be more cautiously conducted rather than to let one exposure be the undoing of many years of fighting for life.
But then, some of us want to know if there are sharks in the water...and some prefer not to know.. to each his own..
mb
I live half time at the beach and am glad I didn't know about this while I was on treatment.
One month after completing tx. i had and anaphylatic rxn to crawfish. While on tx i was eating alot of seafood and would notice occassional itching. I have eaten seafood all my life and never had a problem til tx. Could it be coincidence, tx related,or did i just develop an allergy?
SnoWav - I'm with you...I'm glad I didn't read this a couple of weeks ago! Just got back from Cancun...and was completely oblivious to the ocean water, shrimp, fish etc. that I gobbled up! (but nothing raw for me). I didn't know we were supposed to stay out of the water though. I guess sometimes ignorance really is bliss (though I know most here would not agree with that)!
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