H1n1,flu, Shots

    • Anonymous
      September 8, 2009 at 6:59 pm

      Hi everyone, its been awhile since i have talked. I still read all the post to try to keep updated. I was wondering how everyone feels about the shots when having CIDP. I think last year it set me off and i had too get ivig treatments and phyicial therapy. I was off work about 5 months and the dr said i need to sign up for ssdi. Here it is again flu season and not only that H1N1. I am scared to take the shots because i am thinking it will throw my cidp in bad shape. So what do you do take the risk on the illnesses or throw your cidp in bad shape because believe me i was bad ( i couldn’t even open a glad bag). Thanks for all your support see ya. tjay

    • Anonymous
      September 8, 2009 at 10:10 pm

      Checked with my neurologist’s office last week and was told to get the regular flu shot but not the H1N1/swine flu shot.

      Hope this helps!

    • Anonymous
      September 8, 2009 at 10:56 pm


      I have always gotten flu shots. In fact, I got one right before the
      onset of my CIDP diagnosis and symptoms.

      For the first time, I am going to skip both shots. I constantly say
      that “I feel like I have the flu.” What if one cause of CIDP are the flu
      shots? We have no idea what makes up these shots or how it really
      affects our bodies. I’d rather suffer with the flu for a few days than
      aggravate the CIDP I already have for months to come. Please give
      this some thought. I think that we are programmed by the medical
      community to receive these shots, but is it really in our best
      interest? I just keep hearing myself say that I feel like I have the

      Thanks for letting me share. I hope we all feel better soon.

    • Anonymous
      September 9, 2009 at 9:52 am

      The flu shot can cause GBS & CIDP. In fact, if you read the fine print for the seasonal flu shot it says you should not get it if you’ve ever had GBS. It also says that it may cause GBS. So, I personally feel, everyone with GBS & CIDP should stay away from it.

      My husband & I will NEVER get the flu shot because Emily has CIDP, we’re not chancing it. Emily’s CIDP symptoms were exacerbated by the flu shot. She was having symptoms (pain in her legs) and the dr thought it was just growing pains. She got the flu shot & 3 weeks later ended up in the ER barely being able to walk, not able to feed herself & having trouble swallowing. It then also started to affect her right eye, which became paralyzed inward.

      I feel Emily fares better with just getting the flu. You can take meds to get better. But if she gets the flu shot there is a VERY good chance it will make her CIDP worse & then all of these last 4 years of IVIG will have been a waste.

      The Swine Flu vaccine (I’m still calling it that because typing that is easier than the letters mixed with numbers, LOL) should not be given to ANYONE in my opinion. Clinical trials only started a month ago. I do not feel it is adequate time to gauge what the immune response will be to it.

      In 1976 there was a swine flu scare. The government rushed a vaccine (sound familiar) & 6 weeks after first administering it they had to stop because there were 500 cases of GBS reported. The government ended up paying out millions of dollars to those people who were affected.

      I don’t trust it & I’m urging EVERYONE I know (sick or not) to JUST SAY NO TO THE SWINE FLU VACCINE!


    • Anonymous
      September 9, 2009 at 5:13 pm

      thanks for your input. I think I will pass on the shots this year.Like everyone has said i would rather have a little flu than flair up me CIDP.

    • September 9, 2009 at 7:10 pm

      Just did my monthly CIDP IVIG and got my annual flu shot today. Been doing both for 15 years. My Neuro said “The flu shot may cause a flare-up of CIDP but FLU may kill you.”

      I have never had any reaction to the shot.

      Note, my reading says that in 1976 a bad batch of flu vaccine caused some GBS but that now the possibililities are a about 1 or 2 in a million. Since that time the shot has not been clearly linked to GBS.

      I find nothing linking CIDP to the shot. My info comes from the CDC department of Health and Human Services. [url]WWW.cdc.gov/flu[/url]

      In any event I personally think the go or no go decision on the shot should be made in consultation with a Neuro with knowledge of CIDP.

      Hey, it is your body do what you think is best.

    • Anonymous
      September 9, 2009 at 9:33 pm

      Look at who is recommending the shots…the WHO and CDC, whom are heavily funded by the vaccine manufacturers.

      Ummm…no thanks.

      The shots also aren’t proven and there are unknown contents and adjuvents in the injection. Things even those without CIDP don’t need!

      [B]Great post Kelly![/B]

      Bill, your information comes from the CDC?! They certainly aren’t going to claim there is any connection! They are funded heavily by the vaccine manufacturers.

    • September 10, 2009 at 12:43 pm

      Ah yes, my info comes from CDC and my neuro and my primary care dr. I didn’t know cdc was funded by vaccine manufacturers. All I have been able to find is that it is part of United States Department of Health and Human Services. I find it a little hard to believe that the Public Health Service which is a uniformed service is funded by anyone other than the US Gov.

      Isn’t a little strange that every physician I have had has recommended the flu shot? Are they all on the take?

      Any how. Like I said, it is your body you do what you think is correct. As for me I already have CIDP so I can’t get it again and I sure don’t want flu on top of a poor immune system.

    • Anonymous
      September 10, 2009 at 2:27 pm

      Dell’s dr. will not allow him to get the flu shot. I’ve also heard ivig cancels out the shot, so why would anyone be getting the shot if you are on ivig.

      Bill, I hate to be telling you this, but I don’t have much faith in govt. agencys. I have been doing lots of research concerning a situation in our state and money talks and bull… walks. Money is the root of all evil and they are playing with peoples lives, the lives of our children and loved ones.

    • Anonymous
      September 10, 2009 at 11:26 pm

      My neurologist has posted signs all over the infusion clinic to NOT take the flu shot.

    • Anonymous
      September 11, 2009 at 1:11 am

      [QUOTE=Dells mom]Dell’s dr. will not allow him to get the flu shot. I’ve also heard ivig cancels out the shot, so why would anyone be getting the shot if you are on ivig.

      Bill, I hate to be telling you this, but I don’t have much faith in govt. agencys. I have been doing lots of research concerning a situation in our state and money talks and bull… walks. Money is the root of all evil and they are playing with peoples lives, the lives of our children and loved ones.[/QUOTE]

      Yes, you are right on all accounts! Getting any immunization while on IVIG cancels it out. I read somewhere the time frame for immunizations is about 2 months off IVIG and 2 months after getting the immunization off of IVIG for it to be effective, maybe that’s why some drs recommend it–they know it isn’t going to work anyway and it’s more money for the government and manufacturers.

      Dell’s mom a great book to read is called the “Medical Mafia”….you may enjoy that perspective.

    • Anonymous
      September 11, 2009 at 1:21 am

      Actually the latest research I have found suggests waiting 3-6 months after an IVIG infusion to get an immunization. Sometimes longer depending on what the immunization is, especially for children.

      I find it odd that EVERY single nurse who has come into our home to take care of Emily will all do this strange nod when I say Emily ended up in the hospital 3 weeks after having the flu shot. Apparently they hear many stories similar to ours.

      I think many dr’s are not up on the latest & greatest info on IVIG. It doesn’t surprise me that they wouldn’t know about it canceling out a vaccination.

      There are ways to prevent getting the flu. And if you do get the flu there are anti-virals available to help you get over it. If you get the vaccine & your disease gets worse you may never gain enough back to get to where you were before. It could send your disease into overdrive. For me, I’d rather risk the flu for my daughter than risk her becoming permanently disabled.


    • Anonymous
      September 11, 2009 at 1:25 am

      The other thing Kelly, is that these flu shots are based on “predictions”…a pretty big risk, so you “may” not get the flu.

      As for the H1N1 vaccine, that has only been around about a month, and we all know what happened the last time the government made a hasty decision and tried to immediately product a vaccine!

      edited: from the CIDPUSA.org site, facts about IVIG:
      17. IVIG and vaccination issue.

      IVIG prevents vaccinations to take any effect in your body.

      Immunizations should not be given for at least 1 month and preferably 3 months after a course of IVIG.

      If on IVIg you do not need routine flu shots. As you are getting the antibodies. (Check with your physician).

    • Anonymous
      September 11, 2009 at 3:32 am

      Over here we’re telling CIDPers to talk with their doctors. The patient, with his doctor, needs to weigh all the variables: current CIDP status, types of medication that you’re on (IVIg, immunosuppressants, etc.), other medical problems, factors such as age, etc. Someone for whom the flu would normally not be a real problem (other than feeling awful for a week), or like me who never catch anything despite being on immunosuppressants, would probably due well to skip the vaccination. But an elderly person, someone with respiratory problems, someone for whom the flu might be more problematic, would probably want to consider having it. But all of that needs to be considered in consultation with your doctor. (And rest assured that most doctors, either for Hippocratic reasons or fearing litigation, won’t advise you to have treatment that they think might do more harm than good.)

      The question will become more problematic if the version of H1N1 we have at the moment becomes as deadly as they’ve feared it would — the question we’ll have to ask ourselves then will be what’s worse: GBS/CIDP relapse, or death. And another problem will be if the governments make the vaccination mandatory. So far neither of these has happened but, if they do transpire, well, I’ll jump off that bridge when it catches fire under my feet. 😮

      Keep fighting,


    • Anonymous
      September 11, 2009 at 6:45 am

      Howdy All,

      The annual flu shot topic is once again upon us all, except this time its about
      2 shots instead of one. I plan on calling in to my dr about it, because last year I was on Prednisone at the time, and this time I am on IVIG therapy.
      Last year he said “No Way, no shot”. Pretty confident he will say the same thing this year, but I plan to ask anyway.

      I am a firm believer that immunologic shots add up to bring conditions we may be prone to, up to the surface. My daughter developed Chrohn’s disease directly after guardasil, she is 18 and taking alot of meds.

      I did allergy shots for 4 years along with a flu shot every year, and slowly my cidp has become a full time problem. In the past it was remitting.

      Sometimes neuro’s tell their patients to get the flu shot. Why, I don’t know, but there may be other factors where risk vs benefit comes into play. younger people usually do better with flu. I hear the swine is tougher on the younger group.

      I am scaired to get the flu or the flu shots!:) Have a Great day.–tim–

    • Anonymous
      September 11, 2009 at 9:27 am

      This is a sensitive subject with me. But, everyone needs to make their own decision. I refused the shot last year while I was in the hospital for IVIG load dose. The nurse looked at me funny and I asked her politely why she would want to give the flu shot to someone with a compromised auto-immune system? She went away.

      In 1976 I and my wife stood in line and got the Swine Flu shot. She was okay.
      I got the Swine Flu from it. I had never heard of GBS. Now, several years later, I have the chronic form of it. So the question becomes… When did my CIDP start? 17 years ago with slow onset symptoms? Or… In 1976 when I got the Flu from the shot ?

      To be honest, I have not had a flu shot since 76. I would Never discourage anyone else from taking it, but feel it’s important that everyone thinks it through. Jeff

    • September 11, 2009 at 12:04 pm

      Any of you go to the GBS/CIDP foundation bi-annual medical conferences? If so please check my memory as it is not the world’s best. I have been to 3 of the conferences and the subject of vaccination has been raised with the “experts” each time. As I remember it we were told two basic things with no disagreement among the neuros there who specialized in cidp: A dead vaccine is ok but don’t take a live one and that there was no evidence connecting cidp to the flu shot. Any how, that is my memory. Any of you remember it differently?

      Thanks for the info on ig effect on vaccinations. It seems to be a real discussion point in the med community. Seems to be a general agreement that ivig “kills” vaccines with the exception of tetanus and influenza. I may have wasted my time but on the other hand I may not have. Any how, I have found no medical professional saying that “dead” vaccines are of any danger to people with cidp.

      SO each of us is entitled to our own perspective of the Medical Profession and the Government. AND we are each the most concerned person in the world about our own health. Let each of us do what we believe is best for our own health. For me, and not for anyone else, I remember my neuro 15 years ago who was light years ahead of the average neuro on knowledge of cidp, who was an army doctor so he got no cut on vaccines, telling me that I already had cidp so I wasn’t likely to get it from a flu shot. For just me and not you or any one else I got the shot and I will continue to do so.

    • Anonymous
      September 11, 2009 at 4:29 pm

      Hi all,

      I am in the middle of a GBS episode. So far it has been mild if I look what others go through.
      Personally I think the less shots and medication I am subjected too, the better – especially if there is a risk of a recurrance brought on by the flu shot.
      I think we sometimes rely too much on medicines when our body could take care of it if we would only give it a chance.
      In a lot of cases the side-effects of the treatment seem to be almost worse than the affliction.
      Finally, prayer is an excellent treatment and in my case the result is a faster than expected recovery, plus I am totally off any kind of medication. God is good!


      At the end of the day, it is up to yourself to decide what’s best for you – after researching the options of course.

    • Anonymous
      September 12, 2009 at 7:33 am

      People make their own decisions. I have tried to read all that I can and understand to the best of my ability. I am very confident in NOT taking a flu shot again this year.

      I will wash hands regularly, I already avoid crowds, take care in public restrooms and try to keep myself healthy. Everyone needs to make their own decision. please read and decide.

      Dick S

    • Anonymous
      September 12, 2009 at 3:29 pm

      Well my husband took the vaccine without the live virus as did so many others and they developed GBS/CIDP from it. So you can’t go by that, it’s all in what your immune system does after it receives the vaccine.

    • Anonymous
      September 12, 2009 at 3:42 pm

      i wouldn’t go near these shots !

    • Anonymous
      September 14, 2009 at 4:44 pm

      UP until Dec/Jan of this year all ‘flu’ shot vaccines [live or dead] were [B][I]Black Boxed[I][B][/B][/I][/I][/B], meaning special precautions should be taken or/considered by ‘ some special populations’ such as we happen to be.
      I got bees buzzing under my GP’s and Neuro’s hats at the time about a reaction I’d had to my first ever flu shot in my first year of this all, prior to diagnosis. Both they and I have researched it as best possible and Dead BUGS are OK to get? LIVE ONES NOT! I’m still not sure, but given the virulity of this new flu? I’m not sure I’d do well at all w/’just’ the flu! Durned either way. The docs actually READ those boxes and understood!
      IF you are on IVIG, you’d have to wait 6 months or so anyhow w/o the infusions to get the live versions. [That too is info in the ‘prescribing info’ of any brand.]
      I’m going to give it a try this year tho, for the ‘basic’ DEAD flu vaccine. I am quaking at the prospect, BUT I also have to consider the well being of those around me? Nothing like going to a doctor’s office or the hospital and ‘sharing’! JUST learn about all the likely vaccines and web up their prescribing information sites…..
      As for the H1N1? One key piece of info I’m not finding is whether it is a live or dead vaccine! NO ‘prescribing info’ on this stuff that I’ve found …. yet.
      I”m especially worried as it was a really long bout of pneumonia that ‘gave’ me this lasting memory.
      I may ultimately make my decision by either going or not going to get the shot[s]. That’s how I made my decision last year, and didn’t get shots.
      I’m not saying anyone should or shouldn’t? It IS a very personal decision that might have good or not so good consequences. We have become super cautious in protecting ourselves and surviving. With good reason.
      All and any feedback about yes, shots or no can be useful to all of us! I’ll let you know if I do? How I fare.

    • Anonymous
      September 15, 2009 at 6:38 pm

      thanks for all the input. I guess you just check all ends and make a decison, to the best of your knowledge.

    • Anonymous
      September 18, 2009 at 2:44 pm

      Ryan saw our neuro yesterday and he wants Ryan to get both flu and N1H1 shot. I wasn’t to sure about it so we called Dr, Lewis about it and he agreed with our neuro in GR that Ryan should get the shots. Both. He said yes it possible for things to go bad again but he said if ryan doesn’t get the shots and then get the flu or swine flu it could kill him. so he reccommends that Ryan get both.
      But we are scared. we don’t want the shots but we don’t want Ryan to get sick and possibly be fighting for his life either.
      very confused.. and scared!


    • Anonymous
      September 18, 2009 at 4:27 pm

      [SIZE=”2″][SIZE=”3″][FONT=”Georgia”][COLOR=”Sienna”]Y’know, we’re all told to wash our hands, etc. All this big to-do about handwashing whether with soap and water or the liquids.

      But, when push-comes-to-shove, the flus, neither one of them, are spread by bacteria. They’re viruses. Spread through the air.

      So now what do we do? Make the choice as to whether or not to get the shots.

      Hand washing is great and a good idea, but it isn’t going to do diddely-squat to protect against the flu viruses.[/COLOR][/FONT] 🙁 [/SIZE][/SIZE]

    • Anonymous
      September 25, 2009 at 1:04 am

      My brother’s office gives everyone a flu shot and on the consent form it stated that if you have or have had GB don’t take it. I assume that would also mean CIDP. I am worried about taking them. I know the CDC states that you should if you have auto immume problems, but my gut says NO…

    • Anonymous
      September 27, 2009 at 1:56 pm

      I’m a “newbie”, and can’t really comment on flu-shots and CIDP interaction, but wanted to mention something.

      As I understand it, there is NO H1N1 vaccine available right now. If someone offers you a vaccination for H1N1 specifically, I’d question them. Everything I’ve heard and read indicates that they won’t even be available until sometime in October at the earliest.

      So, like others, I’m at a loss as to what to do. My GP wanted me to get a shot while I was in to see him a couple of weeks ago, but I said I’d like to wait until we figure out exactly what is going on inside my body. Everything I’ve read seems to suggest that those with the weakest immune systems should get the shots, but yet those with the weakest immune systems could also be at the greatest risk of complications FROM the shot.

    • Anonymous
      September 27, 2009 at 10:47 pm

      And, family, friends and others do come to the house and can ‘share’
      I was most scared in the hospital where, when I was admitted, they wanted me to get the whole panoply of innoculations for the flu, pneumonia, and a couple other things- I refused and explained why- I believe no follow up on the ‘WHY’ was ever done. Yes I had ‘injuries’ BUT I’d not had something contagious while on IVIG! I was especially concerned as I’d received my IVIG just three days before.
      I’ve questioned the aspect of surgery vis-a-vis infusions and my neuro has recommended a 7-14 day wait/window [but no more than 20]. But in those instances the surgery was planned. The wait is so you can benefit the most from the CIDP, and still have the IG work a bit for afterwards for any bodily ‘invasions’ of surgeries. My recent case was emergency surgery, and, only 4 days after IG infusions…all those good IG’s were likely lost in the process [it was a loong surgery]. While it’s not out of my pocket, insurance-wise? I do feel that unfortunate issues essentially wasted one precious IG dose. And, I consider ALL IVIG precious!
      There is a whole HEAP of information on any IG brand’s ‘prescribing information’! Web it up and memorize the key parts about innoculations and other issues. You will be surprised at what you can learn from all that fine print? AND it’s far easier to read on the computer, as you can enlarge it to readable. As far as I know? Few if any records are kept regarding those of us on IVIG and innoculations, or, even viral or bacterial infections.
      There is a lot of pressure being put on government agencies in the US to ‘deliver us from fear’ right now. The potential of an epidemic equal to the pneumonia of the ’20’s or the ‘black plagues’ is real. The numbers are increasing rapidly- really read about them. WE are the most vulnerable in some ways? But because of the IG we aren’t in others. It’s truly like gambling? We make our decisions and live with the consequences. Plain and simple.
      I really wish there was MORE info on these new vaccines and all? I am sure there will be? But, I suspect WE are going to have to be more alert to BRAND NAMES of what mite be good or not. When info is clearly available. You betcha MOST docs won’t read all that fine print! Then, it’s up to US to inform our docs…w/a how about..or OH! NONONO! or whatever.
      Those ‘how-abouts’? I do ’em all the time! Keeps all my docs on their toes, so to speak.
      I especially worry as it was pneumonia that got me this dear gift of ‘CIDP!
      Knock wood really quickly! It’s attached on your forehead.

    • October 5, 2009 at 3:56 pm

      Just say no to the shots!! Not worth it!

    • Anonymous
      October 5, 2009 at 6:12 pm

      My neuro tells me that if I had GBS I should not get the shots, but that CIDP is a different condition and that I should not be concerned about complications. Hope that is the case, I am getting my shots in a few weeks.

    • Anonymous
      October 7, 2009 at 5:45 am

      In 1976 I and my wife stood in line and got the Swine Flu shot. She was okay.
      I got the Swine Flu from it. I had never heard of GBS. Now, several years later, I have the chronic form of it. So the question becomes… When did my CIDP start? 17 years ago with slow onset symptoms? Or… In 1976 when I got the Flu from the shot ?

      I also had that flu shot back in 1976 – I had mono but since my father had just returned from traveling to a swine flu area in the Far East my small town doctors freaked out and gave me the shot and stuck me in an isolation room for a week. I also question whether that caused my slow decline. I was 12 at the time and lost all my coordination and stamina from that point on – I remember a full year later still having trouble staying on my feet in gym class but everyone just assumed I was just clumsy. Nobody else in my family got the swine flu shot so I have no basis for comparison as to whether it was a “tainted” batch or not. I have no intention of ever getting flu shots of any kind again since it is possible that is what set off my CIDP – however my husband does get flu shots; we have both already had a version of H1N1 which did set me back a bit but not a full relapse; and I get IVIg weekly which complicates the timing of flu shots anyway.

      I don’t offer an opinion either way about the flu shot except to say that from a personal standpoint I resent my husband’s co-workers who come to work sick, get the entire team sick, and then my husband brings it home to me. So far that has happened 6 times this year and there are only 8 people on his team. From my soapbox I think it’s selfish to come to work when you are sick IF you have paid sick leave OR your company has policies in place to allow you to work at home. Everyone on my husband’s team has now had H1N1 – one badly enough to be hospitalized briefly – and they still come to work sick because “they need me” or “I get bored at home” or “I had a meeting” or whatever excuse. People need to be more aware that although the people they work with might appear healthy that is no reason to assume it’s safe for you to go to work with H1N1 or even the regular flu.

      OK off my soapbox…


    • Anonymous
      October 7, 2009 at 10:09 am

      Julie – I hear you on people going into work while sick except my complaint is about people sending sick kids to school.

      Last week I was in the office at Emily’s school. This kid comes in looking AWFUL – it was VERY obvious that he was sick. He tells the secretary he was throwing up the previous evening & he had a fever when he woke up. He said his mom gave him some Tylenol & sent him to school anyway. He said he begged her to let him stay home.

      I was stunned.

      The secretary called his mom & gave her a talking to about sending that poor kid to school in that condition.

      I live in constant fear someone is going to send their kid to school with chicken pox. I just don’t know what that will do to Emily’s immune system. She had the 1st vaccine when she was younger (I think that may have contributed to her CIDP) & she was supposed to get a booster but obviously didn’t. Her dr says she has 85% immunity but I still worry.


    • Anonymous
      October 7, 2009 at 5:13 pm

      [FONT=Comic Sans MS][SIZE=3][COLOR=royalblue]*Munching on popcorn while listening to Julie on her “soap box” & yelling, “You go, Girl! I hear ya’!”*[/COLOR][/SIZE][/FONT]
      [FONT=Comic Sans MS][SIZE=3][COLOR=royalblue][/COLOR][/SIZE][/FONT]
      [FONT=Comic Sans MS][SIZE=3][COLOR=royalblue]My problem would be with home health aides coming into my home sick.[/COLOR][/SIZE][/FONT]
      [FONT=Comic Sans MS][SIZE=3][COLOR=royalblue][/COLOR][/SIZE][/FONT]
      [FONT=Comic Sans MS][SIZE=3][COLOR=royalblue]I am very diligent regarding handwashing or hand sanitizer. Strange part of it is, the ladies I need to remind the most to wash their hands, are the ladies with children! Go figure. Last winter/spring I had upper resp. infections (3) times. And every time, my one aide had been ill before me (So had her 10-year old faughter.). I also had pneumonia for the 1st time this past May. (I know you can’t “catch” pneumonia. My lungs have been compromised since my GBS in June / 2000) [/COLOR][/SIZE][/FONT]
      [FONT=Comic Sans MS][SIZE=3][COLOR=royalblue][/COLOR][/SIZE][/FONT]
      [FONT=Comic Sans MS][SIZE=3][COLOR=royalblue]Did I ever take a pneumonia shot? No[/COLOR][/SIZE][/FONT]
      [FONT=Comic Sans MS][SIZE=3][COLOR=royalblue]Will I ever take a pneumonia shot No[/COLOR][/SIZE][/FONT]
      [FONT=Comic Sans MS][SIZE=3][COLOR=royalblue]Did I take a flu shot last year? No. (Before GBS in 2000 when I was working, my employer offered flu shots to us. I took the shot. Between 6-8 weeks later, I would contract the flu. Strange. After the third year, I learned my lesson & took my chances re: the flu. I was not sick again.)[/COLOR][/SIZE][/FONT]
      [FONT=Comic Sans MS][SIZE=3][COLOR=royalblue]Will I take the H1N1 shot? Not on your life.[/COLOR][/SIZE][/FONT]

    • Anonymous
      October 9, 2009 at 8:32 am

      They are closing entire schools and businesses around here because of H1N1 outbreaks – hundreds of children in schools are getting sick, teachers are sick, and now parents are sick too. (and bringing it to work with them STILL 😡 ) I don’t know about where you all live but the sheer numbers of people around here who have contracted H1N1 have increased considerably in the last 6 months… not to mention the tragic deaths of previously healthy people due to H1N1. We are at the point now where they allow few visitors in hospitals, your doctor doesn’t want to see you if you are sick – you are to call with symptoms and they will call in an antibiotic for you – most public places now have hand sanitizers and masks at the front door, and daily there are announcements of more school and business closings due to H1N1. We are truly in an epidemic here and something must be done to control the spread. Should some people get the shot – absolutely – should everyone – no, I can’t, some of you can’t… but those who can, who have no risk factors… well maybe they should before things get even more out of control.

    • Anonymous
      November 26, 2009 at 11:19 pm

      I get the regular flu shot.
      Just because I am in a clinical setting, and I’d be doing more harm than good if I were to get sick and expose all my critically ill patients to something that may kill them.

      I’m not on IG or any immune modulating treatment as of yet, so the shot is still effective in my body.

      I don’t qualify for the H1N1 flu shot.
      I don’t work with infants under 6 months, and I’m not elderly or “critically ill”.
      I also don’t know if I really wish to get this shot if it is to become available to me.
      This vaccine was available previously, and there was an “outbreak” of GBS cases associated with it.

      If they suspect I have CIDP ( will not know for certain until results of my nerve biopsy come back), then getting a vaccine that was previously known to cause GBS *the acute form of CIDP*, just sounds like a terrible idea.
      Not that you can get something that you “already have”.. but you can make it worse.

    • Anonymous
      November 27, 2009 at 1:40 pm

      We saw Emily’s neuro a few weeks ago. He walked in the room & said “You didn’t get her the H1N1 vaccine, did you?”. He said it is a VERY bad idea for people with CIDP.

      He also said that he thinks the vaccine is too new & he is not having his family get it either.

      He did give me a rx for Tamiflu for Emily…just in case she comes down with symptoms.


    • Anonymous
      November 27, 2009 at 7:09 pm

      My neuro strongly encouraged me to get both the flu and H1N1 shots this year! As long as they were the ‘dead viruses’, not the live ones in the nasal sprays. I’ve not done that yet due to a variety of circumstances, but mostly because they aren’t easy to just go to a doc’s office and GET!
      I know I got my own CIDP from a pneumonia. The following year I did get a flu shot and reacted to it w/a very sore arm that left a lump for five years. Go figure. IF I do go and can get shots in a safe environment [such as a doctor’s office?] I will do one at a time w/a two week interval in-between to watch for reactions. AND I will want a copy of the vaccine’s package insert to tote home with me to check up on it! Tho ideally I’d like to know what I mite get before I get it?
      Any which way you look at it? You take chances either way. And we don’t live in medically controlled environments either-ergo there’d be no proof that any shot could be the cause of further complications.
      I mite try some now..IF I can? But I’m not gonna beat down any doors nor wait in long lines either. I just am not up to that stuff now.
      If there is a safe and easy way to get a shot- and be monitored properly for reactions…I mite do it. Will let you know next June?

    • Anonymous
      November 29, 2009 at 6:34 pm

      I am getting ahead of myself but I am starting to think that IF whatever I have requires either prednisone or immosupression I am going to have to quit my job working as a preschool teacher or get the flu shots. If that scenerio plays out then I am looking at quite a decision that requires the consultation of a doctor that I trust.