Has anyone with severe ME who is completely bedridden gotten a flu shot (influenza vaccine)

[Tally]

I read a lot of threads about flu shots, including MEA info leaflet and Griffith research, but I couldn't find anything about severely ill patients.

Is there anyone who was bedridden 24/7 and completely dependent on other's help who got the flu shot while in this state?

How did you react?

I am so hypersensitive to everything that I am worried a bit about the vaccine but I feel like the flu could actually kill me in this state. I got a simple cold few weeks ago and it was horrific.

 

[maybe some day]

Sorry I cant answer specifically about bedridden, but I have never gotten a flu shot. I dont trust it. Im trying to get crap out of my body, not put more into it.

There are some herbal remedies over the counter one could take at the first sign of flu. Might be something to consider.

 

[AndyPandy]

@Tally

I’m sensitive to lots of meds. The flu shots made me sick even before ME.

I was bedridden for quite some time in the early stages of ME. Even though I’m not as severe now I still won’t have flu shots. My GP supports my decision.

I’ve survived the flu a few times in the past 7 years with ME. Not good but I’m still not going to have a flu shot.

 

[Wonkmonk]

I am spending just 2-4 hours a day out of bed. I had the flu shot a month ago. My symptoms worsened for a few days, but went completely back to baseline after about 2 weeks.

I wanted to take the flu shot because with every viral infection, I am worsening dramatically, sometimes for 3-4 weeks, so I thought it might be worth taking the risk.

 

[wholepartthings]

There are some herbal remedies over the counter one could take at the first sign of flu. Might be something to consider.

Prof. Dr. med. Dietrich Grönemeyer as guest of Andrea Ballschuh.
Quote from Grönemeyer: "I take Cystus. Cystus is a cistus extract which can be bought in pharmacies. As soon as colds appear, I take this and suck this cystus. And it all gets milder."

 

[Tally]

Im trying to get crap out of my body, not put more into it.

Thanks for replying. I totally get where you're coming from, but flu kills about half a million people each year so it doesn't seem like there's any worse crap to get into your body that the real live flu virus, i.e. getting the flu.

There are some herbal remedies over the counter one could take at the first sign of flu

I don't think that's for me, I don't like natural stuff. ME is natural so I learned my lesson

I’ve survived the flu a few times in the past 7 years with ME. Not good but I’m still not going to have a flu shot.

Did your condition permanently worsen after the flu? I am asking because each time I get a cold I permanently deteriorate so I'm worried flu might do even worse damage. I never had the flu while sick with ME.

I wanted to take the flu shot because with every viral infection, I am worsening dramatically, sometimes for 3-4 weeks, so I thought it might be worth taking the risk.

That was my thinking as well, even just a common cold deteriorates me permanently. It's just that I am so severe now that even someone entering my room to give me the flu shot might deteriorate me...

 

[Moof]

I wondered if other methods of prevention might be safer? I have the jab every year and have never suffered anything more than a bruised feeling on my arm, but nor am I severely affected – I can understand your caution.

Here's a post from the site David Tuller uses for his updates, about 'flu transmission. I reckon it's possible to reduce the risks very significantly through vigilance, good hygiene, and the active co-operation of people caring for you.

Really basic practices like thorough hand washing and hand drying can be much more important than people realise. Having cared for my very frail elderly Mum in hospital, I learned quite a bit about this from the infection control staff – i.e., that properly washed but still damp hands transmit thousands of times more bugs than fully dried ones! Hand washing is always preferable to antibacterial gels, too, though these do have a role.

http://www.virology.ws/2009/04/29/influenza-virus-transmission/

 

[jesse's mom]

Last year I was able to walk easily, to cook a few meals a week for my family go to the grocery alone and was functioning with CFS. I babysat a grandchild who had a cold and fever, I did not worry about the flu that weekend; the baby had a cold. I did take her to the pediatrician's office and think I got infected with the Flu in the office.

Within a few days I was so sick that I went to Emergicare with a high fever and difficulty breathing from coughing and nasal congestion, I tested positive for Flu type A. I got on Tamiflu and in the next two days got worse and worse.

My husband took me to the ER and they called a sepsis protocol on me, I was admitted. I ended up the Flu and pneumonia. I do believe that when I get sick I get sicker than the average person. I was in the hospital for 11 days in isolation. I was on IV antibiotics and steroids. I came out of the hospital in a wheelchair, and my husband had to basically carry me into the house. I have left the house maybe 10 times since. Mostly to go to the Dr. My ME/CFS symptoms became much worse. Here in my area ME is still not really acknowledged,YET. CFS is a little. It is maddening. The ignorance of the medical community here is dangerous and annoying!

The flu is dangerous! More so to anyone who is already sick and who are old and babies. I have battled my way back and have not gotten back to my old baseline. I am trying. I walk to the bathroom and make myself walk around the house every day. I open the outside door to my bedroom and it makes me so happy! Going out is overwhelming and I have more neurological issues and have gotten sick this fall, but not as bad as last year. I am in bed 90% of the time now, I fight to sit up as long as I can every day, several times a day, and can bathe on my own some.

It is your decision whether or not to get the flu shot. The baby got tubes in her ears and I have seen her a few times. I am isolated from most everyone by being housebound. I went to see my daughter in a play, and got bronchitis a few days later. I have been very sick once again, but not nearly as sick as last year. I am afraid of the flu shot, I am still asking myself if being mostly in bed and housebound will keep me safe this year. I will keep an eye on your thread, as I am very interested in the question you raise I also know that the flu shot does not keep us safe from every strain. My family gets the flu shot to try to insulate me more.

 

[Tally]

I am afraid of the flu shot, I am still asking myself if being mostly in bed and housebound will keep me safe this year. I will keep an eye on your thread, as I am very interested in the question you raise

I think not getting the flu and not getting the vaccine would be the best Yet...

I am completely isolated. Only my parents enter my room. We wash our hands all the time, don't breathe into each other, they are extremely careful when preparing my food, they wipe everything with alcohol before handing it to me and so on. Yet I caugh a cold. I was the first one to display symptoms so they didn't even know they had a cold yet.

It means I can catch the flu too, despite isolation.

Aside from ME, I also have severe dysautonomia and chronic lung issues. Triple risk factor bingo.

I also know that the flu shot does not keep us safe from every strain.

I read that even if you get a strain you were not vaccinated against, the symptoms are milder, the flu lasts shorter, and the chances of dying are much much lowered if you had the vaccine.

My family gets the flu shot to try to insulate me more.

My parents will definitely get vaccinated but I might still need a visit from a nurse to draw blood or disabeled help workers to help with carry me and so on, and I might get exposed anyway. Flu season lasts long and I can't predict if I might need to be hospitalized or who knows what.

And if my parents catch a strain they were not vaccinated for they will have milder symptoms, but I will still end up with the full blown flu.

On the other hand, all this time I had ME I never caught the flu and this year I am more isolated than ever.

 

[jesse's mom]

I know I will not be going into any pediatrician's office again... That was a silly mistake on my part! I am missing a bog get together at my mother's house today, but I will not push myself into PEM or expose myself to school kids.

My husband got the flu shot at Emergicare when he brought me early this month. The Dr said I was too sick to get the flu shot that day, in her opinion. I am still not well from bronchitis, better, but still coughing and low grade fevers. The coughing was giving me PEM for the first two weeks. We are fragile in so many ways! Yet some Drs here think if I just took a daily walk outside I would get well. WE have to go with our gut. Get opinions, yes and then make our own choices.

He got a cold a few days after the shot. Maybe I am paranoid because of last year.

 

[Wonkmonk]

That was my thinking as well, even just a common cold deteriorates me permanently.

Luckily, I have always recovered to baseline so far, but I worsened strongly for weeks, so like you I wanted to avoid getting the flu.

The problem is, no one can tell you, if you will deteriorate because of the flu shot, too. I did, but only mildly and for about a week.

So it's kind of a gamble. It paid off for me, but no one knows how you react (also note I am in much better shape, luckily for me).

 

[Tally]

The problem is, no one can tell you, if you will deteriorate because of the flu shot, too

I know but I was hoping to hear from at least one person who is as severe as me or worse.

 

[Wolfcub]

@Tally
It was never a clear diagnosis, as by the time I turned up at the doctor's I was starting week 4...but I am convinced it was a flu virus that knocked me down seriously in March this year, and from which I have never fully recovered (hence why I'm on PR)
It was a strange flu with barely any respiratory symptoms, but in other ways was so like the flu. I have had flu before 2 or 3 times, and know what it feels like.

So that is 8 months with remitting/relapsing weirdness which defies all tests (so far) and which is a real bummer.

So I would say -do whatever you can to AVOID the flu in the first place. That means think before every social move. Wear a breathing mask, wear gloves, never touch your eyes after putting your hands on anything "the public" have touched, wash hands like you had OCD.....gosh -do what it takes. Never mind what people think about you.

I am no way bedbound or even housebound. I am walking wounded at this stage. But I can imagine for anyone in a severe ME state, catching flu would be horrible and serious.

Like you I don't do flu jabs either. I never have and I never will, but that's just me and my stubborn nature. I am probably misinformed but always reckoned I didn't need the invasion of toxic substances. I don't know.
But I definitely don't do flu either.
My plan (last year....ha dratted ha!) was to stay isolated through the flu season, as I felt so well, had no ME then, and didn't want to get sick. I just wanted to keep feeling good, like I was doing (oh the irony!).
That meant simply not going to stores, shops, or near anyone who was infected. Not 100% a sure plan but pretty good. I got online orders for everything, delivered to my door, and washed hands well after taking the orders. I kept healthy!
So when the spring arrived and the snow melted on one beautiful sunny Sunday, I decided to walk to a 24/7 store in the countryside....to buy oranges and some chocolate biscuits....
I was so sure flu season had to be history. No one I'd spoken to had it, and there was no fuss about it in my area.
So in the queue at the store one woman was coughing very badly.
Wow....my timing....
I stuck it out, hoped I wouldn't catch "that cold", got my stuff, felt great for two days, then came down with the one thing which is the worst thing I have ever had in my whole life. It won't go away and probably never will. It changes shape, I get remissions, and it is not as acute as it was in the beginning, but has left me in a twilight zone.
Expensive oranges....hey?

Oh and no herbal flu treatments worked. They helped but they didn't cure, and they usually do. I was not offered anti-virals and wouldn't have wanted the side effects anyway as I don't respond well to that kind of medicine usually. Besides, it was too late by the time I realised it wasn't going away naturally.

Do whatever you can to stay away from flu....is the only advice I can offer.

 

[AndyPandy]

@Tally

I have had many viruses and the flu a few times since I developed ME.

They have made me very sick for months at a time.

I have eventually recovered from the viruses and flu. That has taken me much longer than people without ME.

My ME is much worse when I have a virus or the flu.

My ME is fluctuating. Sometimes I think I’m deteriorating then things improve a bit for a while.

 

[Murph]

I'm mild and dont' get the shot because the one time I did, it knocked me down hard. However, I have the variant that makes me seemingly more immune to colds and flus.

In your case, being bedridden should help insulate you from others and reduce your chance of catching it, i'd think?

 

[Wishful]

I haven't had the flu since developing ME (2001). I've had a couple of colds, and viral meningitis once. Such infections made my ME symptoms worse for a day or two, but nothing more than that. I don't get flu vaccines because no one really knows whether ME patients should get them, and because getting the flu seems very unlikely for me (I live alone in the woods).

I think the effects of vaccines on ME victims is one of those 'it depends on the individual' things. If colds make your condition deteriorate, and you chances of being exposed to the flu are low, I think the risk from the vaccine outweighs the possible protection. Would getting the flu cause more deterioration than getting the vaccine? No one knows.

 

[Wonkmonk]

In your case, being bedridden should help insulate you from others and reduce your chance of catching it, i'd think?

Maybe it would be an option to have anyone who is in contact with you to have the flu shot so they can't infect you. That plus eating cooked food should keep the germs away from you.

 

[Tally]

In your case, being bedridden should help insulate you from others and reduce your chance of catching it, i'd think?

you chances of being exposed to the flu are low,

Maybe it would be an option to have anyone who is in contact with you to have the flu shot so they can't infect you.

My family is definitely getting the flu shot, and theoretically being bedridden does lower my chances of catching the flu, but how can I know if it lowers it enough to risk my life?

My chances of being exposed to common cold are equally low, and yet I caught that. Despite the vigorous hand-washing, alcohol desinfecting, mask-wearing....

Would getting the flu cause more deterioration than getting the vaccine? No one knows.

Logically, getting the dead virus should cause less strain on my immune system than getting the live one.

People with multiple sclerosis, with chronic lung disease, with AIDS, all of them handle the vaccine well while die from the flu easily.

Is ME special in this regard? Who knows?

 

[Shoshana]

@Tally
I hate doing it, but I get the flu shots. They are dead vaccines, so I think that even if I have a little trouble with them, it wouldn't be as terrible for me as the possible flu, itself. I just don't think I could live thru ,or handle the additional suffering, of an episode of live flu. That MIGHT have been preventable.

I am nearly but not as fully bedridden as you. I am isolated, so like you, i am at less risk than if I went out, or if I had visitors,
yet, I am aware that if I HAD to go out, to an emergency medical office or hospital, I would be in a major exposure, and I would feel better at least knowing I had the flu shot, and had tried it, even tho I know it wouldn't give me 100% protection from anything.

I fear the flu shot and the possible additives in it, but at least it is usually available in individual ones, now, so they do not have the Thimerisol (mercury preservatives) that the 10 dose vials all had, for years in the past, nor do they have the possible interjection that the multiple vials used to have, when the syringe was pushed thru the rubber or latex stopper, multiple times, till 10 people had been given the flu shot, from it, and the same, multiple dose vial was empty.

In short, I fear having the jab, but I fear the flu more, and its complications, and I fear NOT having the shot, even more than having it. Meaning that I get even more anxiety from not having it, than from having it.

I totally comprehend and support people who make the other decision. I went without it, some years, myself.

I don't see much difference, myself, as you noted, between people with other serious illnesses, and us, as far as having it, to give us some hope of some bit of protection from it. I could be totally wrong, I don't have medical science to differentiate or not, so we each must make our own guess and our own decision.

But for me, I lean toward thinking my body will handle the flu dead-vaccine shot, better than it would, if I got exposed to the flu, by some unexpected carrier of it.

 

[Shoshana]

Also, I do use and prefer, natural or herbal interventions, for most ailments,
however I have bad reactions to many of them, and no reaction (good or bd) to many of them,
and if I had the flu, I do not think I would be able to take them in sufficient quantity, or keep them down, or process enough of them, at least it seems unlikely to me, even tho I do use some herbals for some less acute, severe problems, or just for other problems.