Do you follow recommendations for the immune compromised?

[Ocean]

I'm just wondering how many follow health recommendations that are often given for the immune-compromised and elderly and such. For example, not eating certain raw seafood, or different things like that.

 

[hurtingallthetimet]

hello ocean thats a great question dont think ive heard that asked before...somethign to think about will be curious to see if anyone does anything that helps them...

im pretty mcuh house bound so the only thing i can say i guess i do and im not sure if it is recommended for immune compromised but should be i guess...is im kinda obessive about washing hands...or touching anything in stores...i also and this might sound crazy wash things such as containers with whatever..liquid soap for example i wash them off...they have the wipes in store to wipe off buggy...i forget to do that alot becuae i hate going to stroe and have tunnel vision when i go..to get in and get out..but its a very good idea for anyone i think to wipe down the buggy....i was vegtables and furits like crazy..and i overcook meats to make sure done..i know its not the most tasty at times to be well done but i want to make sure to kill anything that might be on it...

sorry i dont have alot of great ideas..but just wanted to share what i do...take care have a wonderful week : )

 

[Ocean]

Thanks Hurtingallthetime, I am really careful about washing my hands and staying away from germs too. I still always seem to end up catching whatever sickness is going around at my husband's work and there seems to be lots of sickness there for some reason. Thanks for sharing your tips! Hope you have a good week too. I saw that you were hurting today. I hope some rest will have you feeling better very soon.

 

[maryb]

There has been a lot of advertising this winter by UK gov't agencies about the importance of washing hands every time you come indoors, to try to reduce the spread of viruses. I have been doing this for years afrter reading an interesting article by a Prof of Virology who said most viruses are transmitted by hand not by inhalation. He mentioned things like the place carrying most bacteria? the no 3 button on a lift, don't ask how they know that...... what he said made sense, but of course I now take it to extremes, hand wash in the car after shopping and then a good scrub as soon as I fet home, I've got OCD on it really, washing my hands about 20 times a day. As far as food is concerned I do the same, everything has to be cooked thoroughly, I don't do shellfish as I'm allergic. Hygiene is such a biggy in my kitchen. I guess it hasn't made me better but it could always be worse, and of course it gives the family something to laugh about.

 

[Ocean]

I'm gonna fess up to the main reason I started this thread. I'm craving oysters! I just read this link http://safeoysters.org/educators/index.htm and it says 95 cases of a certain bacterial infection are reported a year, so not many. Half of those are from raw seafood. I guess most healthy people can fight it off but it says those who have health issues may not be able to and can risk amputation or even quickly die. So do we fall into the below categories? I think to be safe, cooked is the way to go, despite my craving.

"Health Conditions that Increase Risk of Serious Infection

Alcohol abuse
Liver disease (from hepatitis, cirrhosis or cancer)
Diabetes
Cancer (including lymphoma, leukemia, Hodgkin's disease)
AIDS/HIV
Stomach disorders (surgery or taking antacids)
Kidney disease or disorders
Iron overload disease (hemochromatosis)
Other conditions, diseases, or medical treatments that suppress or weaken the immune system, including chemotherapy"

 

[SOC]

Yes, I do as much as possible.

I still haven't convinced my PCP that there are immune issues with "CFS", so I don't usually get the things medically recommended for the immune impaired (like the H1N1 vaccine a few years back, unfortunately). But otherwise, I do try to follow recommendations for the immune impaired and elderly. For example, I no longer visit nursing homes or work with small children. My students are asked not to come if they have anything that could possibly be infectious or if they've been exposed to chicken pox and I keep hand sanitizer, tissues, and a trash can near our work table. I never thought about shellfish because I rarely eat it, but that's another good one to think about. I'm cautious about water -- using distilled water for nasal rinses, etc. I tend to wipe down things that are frequently handled by the public (on the rare occasions I go out) like shopping cart handles, some library book or video covers, etc. Mostly I try to avoid touching stuff when I go out.

I figure most of us would benefit from the precautions for the elderly, even if many of us don't need to be as particular as those with more severe immune issues such as people on immunosuppressants.

OTOH, my husband travels all over the country via airplane and my daughter is in college but lives at home, so they bring home all kinds of germs. I don't know if my immune system is better, or they're better at not spreading it, but I haven't picked up nearly as many infections from them as I used to. At one point, I'd come down with something every single time my husband came home from a business trip. He didn't get sick, but I did. :mask: And my daughter brought H1N1 home from college. That one was really unpleasant for both of us. :In bed:

 

[Ocean]

SOC, I try to ask people to not visit us if they're sick but sometimes I've forgotten and then gotten sick. Or people don't realize they're sick, thinking they have food poisoning instead of stomach flu for example, and then I end up getting it from them. My doctors have been fine with giving me H1n1 vaccines and things like that but I actually refuse them. I feel vaccines may cause me more harm than good and have had bad reactions in the past. I remember even when my dog was older and had some health problems his doctor recommended skipping further vaccines because of the possible harm it could do. I do have another condition that has possible immune involvement so maybe that's why they offered me the vaccines, I'm not sure. But in general I feel vulnerable and do try to be as careful as I can. Scary that your daughter had H1N1!

 

[ukxmrv]

I try to avoid people who are sick with an obvious virus but apart from that I can't think of any advice for the immuno-compromised that I reguarly see or do . Avoid vaccines because family members that have them don't tolerate vaccines well.

My diet is limited by what I can tolerate and if I was well enough to eat raw shellfish and it was from a safe source I would certainly do so. Having such a limited number of things that I can eat for years on end, and such a limited life, means that when I can physically do something I probably will.

 

[SOC]

SOC, I try to ask people to not visit us if they're sick but sometimes I've forgotten and then gotten sick. Or people don't realize they're sick, thinking they have food poisoning instead of stomach flu for example, and then I end up getting it from them. My doctors have been fine with giving me H1n1 vaccines and things like that but I actually refuse them. I feel vaccines may cause me more harm than good and have had bad reactions in the past. I remember even when my dog was older and had some health problems his doctor recommended skipping further vaccines because of the possible harm it could do. I do have another condition that has possible immune involvement so maybe that's why they offered me the vaccines, I'm not sure. But in general I feel vulnerable and do try to be as careful as I can. Scary that your daughter had H1N1!

I'm very firm with the parents of potential new students and play the guilt card pretty heavily. "I have an immune disorder and will catch anything that comes near me. Even the flu or a bad cold could put me in bed for weeks or worse, so I would really appreciate it if you cancel tutoring if your child has any sign of illness." They don't want to be the one who made me so sick, so they're usually good about it -- often fussier than I am. I figure if someone thinks they have food poisoning, they need to stay away from me, because I'm not running the risk of getting a stomach bug, whatever they think.

I'm particular about vaccines, too, but with a daughter in college and 10-17yo students coming in every day, there are some things there's almost a certainty I'm going to get. H1N1 was a big risk because it runs around campuses. We begged our PCP for the vaccine when it was available for at-risk populations, but he refused. When daughter and I both came down with H1N1 he denied we had it (temp below 100F, so no fever, so no H1N1 ) until we both got pneumonia and were diagnosed by other doctors in Urgent Care.

So, I do get killed virus vaccines for things I'm very likely to be exposed to given my circumstances and avoid as far as possible live-virus vaccines, which my experience tells me my immune system can't handle at all.

 

[Clodomir]

Hi everyone,

I became ill just after I had the vaccine against normal flu! So for me and my children: NO MORE VACCINE at all.
My doctor said that the start of my CFS was probably activated by the vaccine...
When one of my daugther is sick, well, no more kisses, they have to stay away from me, everyone has to wash their hands twice, etc... It is a bit drastic but, cross my finger, it works.

Have a good day

Clodomir

 

[Ocean]

I'm very firm with the parents of potential new students and play the guilt card pretty heavily. "I have an immune disorder and will catch anything that comes near me. Even the flu or a bad cold could put me in bed for weeks or worse, so I would really appreciate it if you cancel tutoring if your child has any sign of illness." They don't want to be the one who made me so sick, so they're usually good about it -- often fussier than I am. I figure if someone thinks they have food poisoning, they need to stay away from me, because I'm not running the risk of getting a stomach bug, whatever they think.

I'm particular about vaccines, too, but with a daughter in college and 10-17yo students coming in every day, there are some things there's almost a certainty I'm going to get. H1N1 was a big risk because it runs around campuses. We begged our PCP for the vaccine when it was available for at-risk populations, but he refused. When daughter and I both came down with H1N1 he denied we had it (temp below 100F, so no fever, so no H1N1 ) until we both got pneumonia and were diagnosed by other doctors in Urgent Care.

So, I do get killed virus vaccines for things I'm very likely to be exposed to given my circumstances and avoid as far as possible live-virus vaccines, which my experience tells me my immune system can't handle at all.

SOC, I agree about the food poisoning thing. Unfortunately sometimes people don't mention these things till after they've been in your presence for a while or they start feeling sick only while in your presence or they won't mention it period because they assume they don't have something contagious so they don't even think to mention it. I don't really see anyone anymore because of not feeling well but if I start to again I'll have to remember to make clear in advance to not come near me if they've had anything lately. In the past I've remembered sometimes but not always. Of course some may be carrying germs but not actively sick yet so there's never a foolproof way but the more precautions the better.

 

[SOC]

SOC, I agree about the food poisoning thing. Unfortunately sometimes people don't mention these things till after they've been in your presence for a while or they start feeling sick only while in your presence or they won't mention it period because they assume they don't have something contagious so they don't even think to mention it. I don't really see anyone anymore because of not feeling well but if I start to again I'll have to remember to make clear in advance to not come near me if they've had anything lately. In the past I've remembered sometimes but not always. Of course some may be carrying germs but not actively sick yet so there's never a foolproof way but the more precautions the better.

Yeah, Ocean, I know what you mean. Most people don't think about it very carefully. I'm lucky that most of the people who come to my house these days are either students and their families or friends who have seen me really sick and know to be cautious. Still, neighbors stop by occasionally, service people come to fix things, etc.... There's no getting away from it completely. Fortunately, though, I don't get too near the guy fixing my washer, so it's probably not a big risk. We do what we can and try not to sweat it too much, I suppose.

 

[Ocean]

Very true SOC. Also, after this conversation, tonight I had some seafood and I made sure none was raw!

 

[Ocean]

I think I'd do well to follow some of the recommendations. I don't do vaccines right now though and don't plan to. I know doctors have suggested I get things like H1n1 before because of compromised immunity but I think vaccines are more likely to mess me up than help me.

 

[taniaaust1]

I'm just wondering how many follow health recommendations that are often given for the immune-compromised and elderly and such. For example, not eating certain raw seafood, or different things like that.

I dont follow any of those recommendations thou I do seem to probably be immunologically compromised (my blood test, low white blood counts long term only just in normal range, show signs of what some ME experts say is caused by chronic infection), I also get herpes outbreaks at times.

As I seem to be Th2 predominat.. I dont worry about catching things like colds and flus from others .. and dont care if they visit me when they are sick. I havent caught swine flu from anyone yet (hopefully when the time comes when I do, that will be fine I hope).

As I live alone.. I dont tend to even bother washing my hands before I eat (thou do if Im cooking for a visitor) and just wash hands after going to the loo.

I personally think others are more at risk of catching things from me then I are from them (that has happened several times..Im a carrier of many things ..all those things which thrive in those who have TH2 predominace).

Even things like what's that skin bump thing which is a kind of STD which is caused by pox virus?... I didnt even catch that from my boyfriend when he was carrying that for ages, cause his body didnt fight it off well. My Th2 predominace may of protected me... we didnt even take sexual precautions when he had it.. didnt even bother to do the normal medical recommendations to cover it up on him before having contact.

Having the immune system thou so one sided..thou would put me at risk of other kind of illnesses.

Foods thou are another story.. Im usually fussy in that area and wouldnt do things which would risk food posioning and may take extra care as I do fear what it would do for me ME wise if i had a bad case of food poisoning. (I was thou also fussy in that area before ME)

Im more fussy then most I know in certain ways eg wouldnt cut meat or chicken on a wood bread board in case the juices went into the board etc etc. Dont like to keep leftovers for too long, dont like food left out of the fridge. Take care not to cross contaminate foods. Ive only had food poisoning once or twice in my life and that was from takeway hot foods which were immediately eaten. I wouldnt even buy fish from a supermarket until recently (I previously only ate fish which had been caught the same day).

As far as vaccinations go.. I avoid them. With ME/CFS I personally believe they are too risky to us and our states. The way we are immuno compromised, may be far different to how other chroniic illnesses may be immuno compromised. Maybe we wont even make the antibodies? so that risk isnt worth it to me.

 

[CBS]

I loved sushi so this is a hard one for me. To be truthful, it depends a bit upon how I've been feeling. Just had sushi (salmon & eel) a few days ago but only did it because I've been feeling much better over the last 14 months in general and even more so over the last three months. Three months ago I wouldn't have risked it (I still think it's risky). I also do not eat from buffets in stores or restaurants and I stay away from food sold from bins (with scoops).

I do not get any live vaccines. I am very careful when I am at a doctor's office or a medical facility. Don't touch door knobs if I can help it. Always wash hands on the way out of the building. Try very hard not to touch face or to eat before washing. Really careful in public and private bathrooms (use paper towel to open door on the way out after having washed hands).

I'm especially wary of undercooked meats (I understand that Ian Lipkin is a vegetarian, in part at least because of what he knows about pathogens and meat). In the summer of 2009, I shared some barbequed chicken with my wife. It was done (at least I thought so at the time) but not well done (was a bit juicy, and maybe the slightest hint of pink). The bottom line was that two days later she was fine and I was in the ICU for several days with sepsis that had developed from a campylobacter infection which likely initiated in the intestines. My docs felt that reduced immune function combined with poor motility allowed the campylobacter to establish itself. I took myself to the ER when my temp went from 101 F to 104 F in about three hours.

Sepsis is pretty much as close to life threatening as it gets; the mortality rate increases by roughly 7% for every hour that it goes untreated! By chance, the facility I went to had implemented a sepsis protocol and was featured a few months later as having one of the lowest sepsis fatality rates in the country. Felt pretty lucky to have been discharged.

So I guess my answer to your question is - yes, I try to follow the recommendations but I do take some risks (whether or not their reasonable or even informed might be up for debate but I do see these decisions as a conscious assumption of risk).

 

[November Girl]

i do avoid raw oysters, though I used to love them, and did eat them for years while I had ME. i guess it's a case of better safe than sorry.

 

[Tito]

Yes, I'm very careful too. I eat cooked food almost exclusively, also because it is easier to digest. I buy fresh food, put it straigh away in the freezer, then defrost when I'm about to eat. I don't even keep fresh food more than 48 hours in my fridge. I wash everything, even fruits/vegs with a skin. I know it makes a difference because when I eat at my mother's house my bowels tend to be more affected.