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
My transplant team told me right off, no raw seafood of any kind. I asked about fish and they suggested only white flesh fish and nothing farm-raised and no more than 3 times a week. They also suggested organic chicken and turkey, and little red meat at all. They also said the ocean is basically the world's garbage dump and not to overdo seafood.
A newbie here, after looking through countless articles about this subject of walking on the beach, eating saltwater fish, etc being dangerous or deathly. I was actually told by my new GI dr (who personally knows my transplant team liver specialist) about the danger of this bacteria being present in the ocean and the fish in it.
I currently am a member of a FB group for pre, post, and caregivers. I asked them about this, too. This isn't common knowledge, and since I only first heard of it, I am trying to do my homework.
Have a nice evening folks! Laurel
I currently am a member of a FB group for pre, post, and caregivers. I asked them about this, too. This isn't common knowledge, and since I only first heard of it, I am trying to do my homework.
Have a nice evening folks! Laurel
Hi, as answered before, and in the above general info also...some of which Hector beat me to the post on (thanks Hector)...
no particular doctor warned me. what warned me was the info on several reliable sites such as the one I gave, or the Center for Disease Control list above where it says:
>>>>>>>>>>>>Since it is naturally found in warm marine waters, people with open wounds can be exposed to V. vulnificus through direct contact with seawater.
Since seawater is often whipped into a mist by wind (rather than just evaporation wherein the water is distilled,) it then follows that the bacterium could easily be transfered to skin or lower legs by a walk on the beach.
Obviously that's probably not a likely way to contract the disease, but the mere fact of knowning that all that water contains a bacterium that could, not will, but could make me seriously ill is enough to kind of ruin the lovely jaunt in the mud, chasing the waves in and out barefoot for me....it makes me want to steer clear until I know my liver can handle it...which at stage 3/4.....is not now.
each person can decide for themselves based on their own situation, and I realize not all will choose as I have...which is fine.
mb
no particular doctor warned me. what warned me was the info on several reliable sites such as the one I gave, or the Center for Disease Control list above where it says:
>>>>>>>>>>>>Since it is naturally found in warm marine waters, people with open wounds can be exposed to V. vulnificus through direct contact with seawater.
Since seawater is often whipped into a mist by wind (rather than just evaporation wherein the water is distilled,) it then follows that the bacterium could easily be transfered to skin or lower legs by a walk on the beach.
Obviously that's probably not a likely way to contract the disease, but the mere fact of knowning that all that water contains a bacterium that could, not will, but could make me seriously ill is enough to kind of ruin the lovely jaunt in the mud, chasing the waves in and out barefoot for me....it makes me want to steer clear until I know my liver can handle it...which at stage 3/4.....is not now.
each person can decide for themselves based on their own situation, and I realize not all will choose as I have...which is fine.
mb
MerryBee -- has a liver specialist actually warned you against the beach or are you just exprapolating that advice based on your own research? Just wondering?
interesting question....histamine reaction is not the only thing that is involved, other organs are as well.
In fact the first documented case that "coined" the word was from.....you guessed it, a sea critter!!!!!!
>>>>>>>>>Portier and Richet first coined the term anaphylaxis in 1902 when a second vaccinating dose of sea anemone toxin caused a dog's death. The response was the opposite of prophylaxis and thus was referred to as anaphylaxis, meaning without protection.
Anaphylaxis is an acute systemic reaction caused by the release of mediators from mast cells and basophils. More than one organ system should be involved for the reaction to be considered anaphylaxis. The most common organ systems involved include the cutaneous, respiratory, cardiovascular, and gastrointestinal systems.
The phrase anaphylactic reaction usually refers to a type I hypersensitivity reaction with mast cell and basophil degranulation mediated by antigen binding of specific immunoglobulin E (IgE). The term anaphylactoid reaction refers instead to a non–IgE-mediated mechanism of mast cell/basophil activation. The term anaphylaxis refers to the physiologic events due to either mechanism.
end
How much your liver is involved in these type reactions only God knows. Some involvement, but not to the same degree as the toxin causes an extreme reaction before 99 percent of it even reaches the liver.
These reactions take place usually in seconds or minutes at the most, and are brought on by contact with tissie, i/e/ skin absorption, or particulate in the throat of that offending food bringing on swelling of the lungs/throat even before what hits the bloodstream via the stomach and liver routes.
So you are talking here about an instantaneous autoimmune overreaction, as say opposed to one that comes on over an hour or two, as thing metabolize in the stomach and liver.
In other words not all food poisioning is classified as anayphalaxis. There are also 2 main types of anaphalaxis..one swells up the skin brings water from the body to the surface, the other swells the lungs and shuts down the throat. Both forms are life threatening, the latter being the one that needs emergency care most urgently as the airway is being shutdown.
If you have had an anaphalactic reaction you should be prescribed an Epipen devise which will give you a chance to inject adrenaline and reach a hospital.
I keep one by my bed, and the other in my purse.
Since many time the first reaction to a substance can be your last reaction to anything...you do want to ere on the side of caution here. For instance, it was a perfume sample at a store that sent me to the ER looking like a blowfish on one occasion.
In fact the first documented case that "coined" the word was from.....you guessed it, a sea critter!!!!!!
>>>>>>>>>Portier and Richet first coined the term anaphylaxis in 1902 when a second vaccinating dose of sea anemone toxin caused a dog's death. The response was the opposite of prophylaxis and thus was referred to as anaphylaxis, meaning without protection.
Anaphylaxis is an acute systemic reaction caused by the release of mediators from mast cells and basophils. More than one organ system should be involved for the reaction to be considered anaphylaxis. The most common organ systems involved include the cutaneous, respiratory, cardiovascular, and gastrointestinal systems.
The phrase anaphylactic reaction usually refers to a type I hypersensitivity reaction with mast cell and basophil degranulation mediated by antigen binding of specific immunoglobulin E (IgE). The term anaphylactoid reaction refers instead to a non–IgE-mediated mechanism of mast cell/basophil activation. The term anaphylaxis refers to the physiologic events due to either mechanism.
end
How much your liver is involved in these type reactions only God knows. Some involvement, but not to the same degree as the toxin causes an extreme reaction before 99 percent of it even reaches the liver.
These reactions take place usually in seconds or minutes at the most, and are brought on by contact with tissie, i/e/ skin absorption, or particulate in the throat of that offending food bringing on swelling of the lungs/throat even before what hits the bloodstream via the stomach and liver routes.
So you are talking here about an instantaneous autoimmune overreaction, as say opposed to one that comes on over an hour or two, as thing metabolize in the stomach and liver.
In other words not all food poisioning is classified as anayphalaxis. There are also 2 main types of anaphalaxis..one swells up the skin brings water from the body to the surface, the other swells the lungs and shuts down the throat. Both forms are life threatening, the latter being the one that needs emergency care most urgently as the airway is being shutdown.
If you have had an anaphalactic reaction you should be prescribed an Epipen devise which will give you a chance to inject adrenaline and reach a hospital.
I keep one by my bed, and the other in my purse.
Since many time the first reaction to a substance can be your last reaction to anything...you do want to ere on the side of caution here. For instance, it was a perfume sample at a store that sent me to the ER looking like a blowfish on one occasion.
As you may recall our clinic here has a 2 hr class for new patients.
Unfortunately only the basics are covered, and nothing was ever mentioned about absorption issues, iron issues, ammonia issues, etc. They mentioned "don't eat liver, or shellfish, or malox, but did not have time to say WHY not to eat these.
Me being me, I had to get in and explore the why on each issue.
The bacterium being the reason I then soon discovered.
No, no one specifically warned me not to walk on the beach and here in Oregon it's bound to be less dangerous than in warmer climates,, but the data is clear that any skin break, which for older people with diebetes, bunions, or even Riba rash on the calves, could put someone at risk for absorbing the bacterium.
Listen, I'm not happy to bear this bad news...know that much. In fact I will miss my family reunion this year because they insist on having it on the beach, with big goobs of raw shellfish in the menus...and I've just decided I'm not willing to risk what's left of my liver on all that. The way I figure it, is if even contact with beach water is enough to get us sick, then someone serving me food they chopped on a counter that they cracked crab on may be enough exposure as well. It takes less than 5 seconds for bacterium to transfer from a cutting board to another food prepared there...BTW.
From what all I read the warning is to all those with liver disease not just those who had or have HCV. It is the state of general liver health, not just SVR or lack thereof...ergo anyone with liver damage, or a transplant patient on immunosuppresants would also bear a much higher risk.
Unfortunately only the basics are covered, and nothing was ever mentioned about absorption issues, iron issues, ammonia issues, etc. They mentioned "don't eat liver, or shellfish, or malox, but did not have time to say WHY not to eat these.
Me being me, I had to get in and explore the why on each issue.
The bacterium being the reason I then soon discovered.
No, no one specifically warned me not to walk on the beach and here in Oregon it's bound to be less dangerous than in warmer climates,, but the data is clear that any skin break, which for older people with diebetes, bunions, or even Riba rash on the calves, could put someone at risk for absorbing the bacterium.
Listen, I'm not happy to bear this bad news...know that much. In fact I will miss my family reunion this year because they insist on having it on the beach, with big goobs of raw shellfish in the menus...and I've just decided I'm not willing to risk what's left of my liver on all that. The way I figure it, is if even contact with beach water is enough to get us sick, then someone serving me food they chopped on a counter that they cracked crab on may be enough exposure as well. It takes less than 5 seconds for bacterium to transfer from a cutting board to another food prepared there...BTW.
From what all I read the warning is to all those with liver disease not just those who had or have HCV. It is the state of general liver health, not just SVR or lack thereof...ergo anyone with liver damage, or a transplant patient on immunosuppresants would also bear a much higher risk.
My dad contracted Hep (?) from eating in a seafood restaraunt, he almost died. He didn't have anything wrong with his liver before he ate there. I know my dad almost died...I know this because my mom didn't leave his side (mom is an RN and not one who is sympathic to injury or illness). We weren't allowed to see dad and my mom came home one day shot all of our kids to avoid spred of the virus. This happened in 1994 and dad sustained substantial liver damage.
If you are SVR but still have liver damage and caught what my dad had, I would think you wouldn't make it.
If you are SVR but still have liver damage and caught what my dad had, I would think you wouldn't make it.
Of course check with your doctor per your individual situation, but staying away from the beach sounds a bit extreme and probably unecessary unless you have open wounds and the water is warm.
MerryBee -- has a liver specialist actually warned you against the beach or are you just exprapolating that advice based on your own research?
As to raw seafood, oysters, etc -- does anyone know if someone SVR is any more at risk for serious complications than the general public? Regardless of the answer, probably a good idea not the pack away the raw oysters like I've been doing lately (already gave up Sushi because of the salt content) , so thanks for the reminder.
-- Jim
MerryBee -- has a liver specialist actually warned you against the beach or are you just exprapolating that advice based on your own research?
As to raw seafood, oysters, etc -- does anyone know if someone SVR is any more at risk for serious complications than the general public? Regardless of the answer, probably a good idea not the pack away the raw oysters like I've been doing lately (already gave up Sushi because of the salt content) , so thanks for the reminder.
-- Jim
You are gracious Merry. But I must clarify-----I haven't even STARTED to treat yet and already the moods strike! :-)
Information is powerful medicine. I cannot imagine where I would be today without all the knowledge you and others have given. Nothing I will learn here can disturb me anymore than my initial diagnosis. Omgoodness-anything I can learn here is more like a life preservor. Quoting all that technical stuff makes me sound smart too!!! So, once again thanks for the knowledge......
Wishing ya all the best!!!
Izzy
Information is powerful medicine. I cannot imagine where I would be today without all the knowledge you and others have given. Nothing I will learn here can disturb me anymore than my initial diagnosis. Omgoodness-anything I can learn here is more like a life preservor. Quoting all that technical stuff makes me sound smart too!!! So, once again thanks for the knowledge......
Wishing ya all the best!!!
Izzy
LOL...like everyone in here hasn't been in a mood...or ten...
not to worry....I know sometimes it's hard to bring up subject matter....
I'm missing my crab louie along with everyone else.....
so....no fresh crabs made you crabby???
me too...in fact if I lived beach side (always a dream) I'd be majorly bummed by this thread! (You'll notice the longer you are in here that everyone goes a little reactionary from time to time....try not to worry about it...we all do, and most will admit it later...or make nice. A lot of this goes with the meds....they tend to make everyone hyper-sensitive to things). The key as always, is give the grace you yourself would want to receive...that makes every day a little easier when we remember it.
As to sticking to ones guns...well, I think we all need to speak in our own voice, and I'm inclined to think my delivery system can always use working on, even though none of us will ever be perfecto. Some in here have the gift of hugs....and I envy them that...but as long as we are all trying in our own way to help one another, that's what really matters.
One time I only half jokingly suggested there should be a "deep space nine" area in here..where no newbies could go...so they wouldn't get scared.
But in the end it was shot down because after all, even the innocuous threads often turn into biology lessons..even on the social side it happens...so the only way to stop newbies from discoveries about things like this, occult HCV etc, would be to stop discussing them entirely; which is of course the antithesis of why Medhelp was created.
It's here so we can learn as much and get as much support as possible for our diseases.
Sorry you are having a time with the Riba....it gives "choosing the blue pill" (ala the Matrix movie) a whole new meaning....and trying to kill all those nasty Mr Anderson's is no picnic is it!! Nasty replicator virions..grr...
Anyway, thank you for the encouragement....you hang in there!!
MaryB
not to worry....I know sometimes it's hard to bring up subject matter....
I'm missing my crab louie along with everyone else.....
so....no fresh crabs made you crabby???
me too...in fact if I lived beach side (always a dream) I'd be majorly bummed by this thread! (You'll notice the longer you are in here that everyone goes a little reactionary from time to time....try not to worry about it...we all do, and most will admit it later...or make nice. A lot of this goes with the meds....they tend to make everyone hyper-sensitive to things). The key as always, is give the grace you yourself would want to receive...that makes every day a little easier when we remember it.
As to sticking to ones guns...well, I think we all need to speak in our own voice, and I'm inclined to think my delivery system can always use working on, even though none of us will ever be perfecto. Some in here have the gift of hugs....and I envy them that...but as long as we are all trying in our own way to help one another, that's what really matters.
One time I only half jokingly suggested there should be a "deep space nine" area in here..where no newbies could go...so they wouldn't get scared.
But in the end it was shot down because after all, even the innocuous threads often turn into biology lessons..even on the social side it happens...so the only way to stop newbies from discoveries about things like this, occult HCV etc, would be to stop discussing them entirely; which is of course the antithesis of why Medhelp was created.
It's here so we can learn as much and get as much support as possible for our diseases.
Sorry you are having a time with the Riba....it gives "choosing the blue pill" (ala the Matrix movie) a whole new meaning....and trying to kill all those nasty Mr Anderson's is no picnic is it!! Nasty replicator virions..grr...
Anyway, thank you for the encouragement....you hang in there!!
MaryB
When I originally responded to this thread I was in "a mood" for lack of a better word. I apologize. You provide good information. You make yourself clear and stand by your words. So-imagine my surprise(embarassment) to see this thread come back to life!
Funny thing is tho, living on the beach-sometimes- if the wind blows a certain way-I will break out in hives! All is relieved by a cool shower and some benedryl fortunately
But please excuse my earlier mood. Even before the official brain fog and riba rage of treatment have taken their toll on me, I can prove to be.........um, ........(fill in the word here!) (please don't say newbie-cuz by the looks of some recent posts I am now an oldie) :-)
People....please go to the beach and please don't eat any raw food-especially today's tomatoes!
Isobella
Funny thing is tho, living on the beach-sometimes- if the wind blows a certain way-I will break out in hives! All is relieved by a cool shower and some benedryl fortunately
But please excuse my earlier mood. Even before the official brain fog and riba rage of treatment have taken their toll on me, I can prove to be.........um, ........(fill in the word here!) (please don't say newbie-cuz by the looks of some recent posts I am now an oldie) :-)
People....please go to the beach and please don't eat any raw food-especially today's tomatoes!
Isobella
I understand why we should use caution when eating raw shellfish and yes, we should avoid certain things if they can cause our bodies additional harm but in this country it's too difficult not to be exposed to what is in our public water systems, restaurants, groceries, food processing plants, you name it and we are exposed to it. If we actually KNEW what we are ingesting and what we come in contact with on a daily basis it would probably cause shear panic. I just try to use common sense and avoid the things I know are bad for me and hope it all works out. I can't become preoccupied with what could be potentially be bad for me. So far it's worked and I love sugar, fatty foods, red meat and the greasier the better. Everything in moderation and I think I feel pretty good except for fatigue. Haven't gained a pound and cholesterol is fine. So do we really know what the answers are?
Trinity
Trinity
err on the side of caution and cut oysters out of your diet...even other shell fish. But read the data above....More than 900 people in 18 years....in gulf coast states....and they weren't all Heppers. It sounds like you have a better chance of winning the Florida Lottery than catching this infection from swimming in the ocean. Consider how many people vacation and visit the beach in any given weekend...let alone throughout 18 years.
I have lived in Florida all my life and spent countless hours on the beach and in the ocean...I've gone on many dive trips in the Keys and been scrached and scraped by coral and rock even bitten by fish and cut by lobster trying to grab them bare handed (not a good idea, go back to the boat and get your gloves). Although I can't pinpoint when I contracted HCV, I'm sure it has been more than 20 years and have never caught anything bad from the ocean. I'm sure that it's ok to swim or just walk on the beach...especially in cold ocean states...
I have certainly stopped eating oysters and shell fish since I was diagnosed. My father (jazz musician) played a gig at a sea food restaurant in New Smyrna and almost died after eating there that night...He got some strain of hep and spent a good long time in the hospital and months of recovery....
People don't stop going to the beach.....DON'T EAT RAW OYSTERS
I have lived in Florida all my life and spent countless hours on the beach and in the ocean...I've gone on many dive trips in the Keys and been scrached and scraped by coral and rock even bitten by fish and cut by lobster trying to grab them bare handed (not a good idea, go back to the boat and get your gloves). Although I can't pinpoint when I contracted HCV, I'm sure it has been more than 20 years and have never caught anything bad from the ocean. I'm sure that it's ok to swim or just walk on the beach...especially in cold ocean states...
I have certainly stopped eating oysters and shell fish since I was diagnosed. My father (jazz musician) played a gig at a sea food restaurant in New Smyrna and almost died after eating there that night...He got some strain of hep and spent a good long time in the hospital and months of recovery....
People don't stop going to the beach.....DON'T EAT RAW OYSTERS
DS...
thanks for the encouragement, and yes, it is different strokes for different folks.
I think the folk that just want to do what doc holiday says and let it go at that tend not to come in here that much though...but the service towards better treatment and better health cannot be underestimated.
Even if things occasionally get testy in here over a subject ot two, or semantics, etc, I think the group does good work and needs to keep the goals in mind.
Glad you are here.
Willy...
I think that goes without saying, since the general populace get exposed regularly and their livers handle things fine.
Just realize however,,
that they ARE handling toxins that are ever present! Also climate effects how much bacterium is present as ones health effects how much one can handle true, but local climate cannot guarantee that the dish you "order out" won't have levels high above the norm, not the way things are flown around these days....nor can apparent health guarantee a reaction will not occur, nor that some damage will not be done, even if not readily perceptable.
the question though, is how does one know when it's too much toxin?
I think getting sick is not a good way to find that out, so I'd ere on the side of caution until one knew the liver was out of danger, i.e. Had SVR'd for quite a while.
After all, as an example: I know that while Nutrasweet (Equal) while it does not contain formaldehyde, nevertheless it is metabolised into formaldehyde by the liver. Now, before I knew I had liver disease...I knew that stuff was toxic and would have none of it...
so the chances I'd risk consuming that now are even less. It might then follow that my alerting everyone to this is just a gift to those who prefer to "buckle up" so to speak...or.........a word to the wise...take your pick. : )))))))))))))))))))))))
thanks for the encouragement, and yes, it is different strokes for different folks.
I think the folk that just want to do what doc holiday says and let it go at that tend not to come in here that much though...but the service towards better treatment and better health cannot be underestimated.
Even if things occasionally get testy in here over a subject ot two, or semantics, etc, I think the group does good work and needs to keep the goals in mind.
Glad you are here.
Willy...
I think that goes without saying, since the general populace get exposed regularly and their livers handle things fine.
Just realize however,,
that they ARE handling toxins that are ever present! Also climate effects how much bacterium is present as ones health effects how much one can handle true, but local climate cannot guarantee that the dish you "order out" won't have levels high above the norm, not the way things are flown around these days....nor can apparent health guarantee a reaction will not occur, nor that some damage will not be done, even if not readily perceptable.
the question though, is how does one know when it's too much toxin?
I think getting sick is not a good way to find that out, so I'd ere on the side of caution until one knew the liver was out of danger, i.e. Had SVR'd for quite a while.
After all, as an example: I know that while Nutrasweet (Equal) while it does not contain formaldehyde, nevertheless it is metabolised into formaldehyde by the liver. Now, before I knew I had liver disease...I knew that stuff was toxic and would have none of it...
so the chances I'd risk consuming that now are even less. It might then follow that my alerting everyone to this is just a gift to those who prefer to "buckle up" so to speak...or.........a word to the wise...take your pick. : )))))))))))))))))))))))
try goggling mercury poisoning.
If his symptoms fit you could call your local lab and get it tested, as he could be given treatment if it is mercury to get some of it back out.
I'd stay WAY away from any city dump area, especially now that they've added a new layer of mercury in the form of all those "energy saving" florescent bulbs, which contain mercury.
For the other 10,000 things the fish could ingest in such an area as well, it's just not a good idea.
Sometimes I think we just don't think of the possibilities.
Like for instance, I saw this wetlands that was a duck hunting area for years...and now it's a farm....but has anyone thought to test the food there for lead?? Probably not.
MB
If his symptoms fit you could call your local lab and get it tested, as he could be given treatment if it is mercury to get some of it back out.
I'd stay WAY away from any city dump area, especially now that they've added a new layer of mercury in the form of all those "energy saving" florescent bulbs, which contain mercury.
For the other 10,000 things the fish could ingest in such an area as well, it's just not a good idea.
Sometimes I think we just don't think of the possibilities.
Like for instance, I saw this wetlands that was a duck hunting area for years...and now it's a farm....but has anyone thought to test the food there for lead?? Probably not.
MB
Good post I think.
------------------------------------------------------
" I was not aware of this information though only that eating raw shellfish was not considered a wise idea:-( "
----------------------------------------------------------------------
This is a rather common response. Many people have no idea that it's an issue. That's why it's good to post such things; scarey or no.
Eating raw seafood/sushi is also a newer and hip thing to do; one more reason to make people aware of it.
One other thing to emphasize...... not all people with HCV are hyper suseptible to vibrio vulnificus. The people who are least subject to it are people with low iron and low liver damage and strong immune systems. Some heppers have all three.
The MOST suseptible might be cirrhotics, people with impaired immune systems, high iron, and otherwise impaired blood cleansing capabilities such as those with a TIPS procedure where the blood bypasses the liver.
best,
Willy
------------------------------------------------------
" I was not aware of this information though only that eating raw shellfish was not considered a wise idea:-( "
----------------------------------------------------------------------
This is a rather common response. Many people have no idea that it's an issue. That's why it's good to post such things; scarey or no.
Eating raw seafood/sushi is also a newer and hip thing to do; one more reason to make people aware of it.
One other thing to emphasize...... not all people with HCV are hyper suseptible to vibrio vulnificus. The people who are least subject to it are people with low iron and low liver damage and strong immune systems. Some heppers have all three.
The MOST suseptible might be cirrhotics, people with impaired immune systems, high iron, and otherwise impaired blood cleansing capabilities such as those with a TIPS procedure where the blood bypasses the liver.
best,
Willy
No wonder you are tired, that was long ROTFLOL
Seriously I really appreciate all the stuff you put out as I find it to be interesting stuff. I also agree with you how newbies can get scared from reading some things but should take it all in a little at a time. I still remember when I learned I had hep c. I started to read stuff and thought I had just been given a death sentence. As I continued to read I slowly began to educate myself on all things HCV and will continue to do so until they find a cure for all.
I also agree with you that this is the best forum on the internet for hep c. I have participated in many over the years and this one is hands down the best because of all the great people who contribute like yourself, jmjm, hepatitis researcher, and everyone else who just support everyone and try to get good solid information to people. I like the facts mam.
Also I was only kidding about the long winded reply. I prefer them that way actually if you are saying something important.
I also think it stinks but we do need to watch what we ingest in our bodies since our livers and immune systems are under attack. I happen to love seafood, raw clams, sushi, and alcoholic beverages too. I don't mean getting drunk but rather to drink socially. . I have had to put it on hold for a short while. When I beat this beast into submission I may revisit it again someday. I was not aware of this information though only that eating raw shellfish was not considered a wise idea:-(
Seriously I really appreciate all the stuff you put out as I find it to be interesting stuff. I also agree with you how newbies can get scared from reading some things but should take it all in a little at a time. I still remember when I learned I had hep c. I started to read stuff and thought I had just been given a death sentence. As I continued to read I slowly began to educate myself on all things HCV and will continue to do so until they find a cure for all.
I also agree with you that this is the best forum on the internet for hep c. I have participated in many over the years and this one is hands down the best because of all the great people who contribute like yourself, jmjm, hepatitis researcher, and everyone else who just support everyone and try to get good solid information to people. I like the facts mam.
Also I was only kidding about the long winded reply. I prefer them that way actually if you are saying something important.
I also think it stinks but we do need to watch what we ingest in our bodies since our livers and immune systems are under attack. I happen to love seafood, raw clams, sushi, and alcoholic beverages too. I don't mean getting drunk but rather to drink socially. . I have had to put it on hold for a short while. When I beat this beast into submission I may revisit it again someday. I was not aware of this information though only that eating raw shellfish was not considered a wise idea:-(
My hub brought home a sea bass he fished out from our local river which is close to a ending of fresh water river. And above that are old mills along with a running trash plant. He fried it well and ate a good amount. then later he felt very dizzy, nausea, blurred vision and shortness of breath. It continued the next day he had two of the same spells. He is wondering if it could contain high levels of Mercury? If so should he send the other raw fish to be tested? Where do we go for that?
Thank you
Thank you
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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