US Gov(CDC) called us today asking about gbs

    • September 20, 2007 at 4:57 pm

      sorry no info

    • Anonymous
      September 20, 2007 at 6:06 pm

      Hmmm, that must have been the last call you had ever expected to get. I’m wondering if there may be a lawsuit or something going on with regards to immunizations and they are trying to find any info they can get, maybe something involving a batch that went out to your doc’s. But …. who really knows. I admire your tenacity for asking about future shots, I wouldnt have even bothered because I think I would just have assumed that they would ‘tow the party line’ – what a pity 😮

    • Anonymous
      September 20, 2007 at 6:59 pm

      That’s really freaky. I’ve heard a lot in the news about adverse reactions to immunizations, some in the military but I didn’t realize the CDC was involved. Wow, it must be a bigger phenomenon than we suspected if they are willing to go through the legal hoops with your doctor to get your phone number. That is probably how they got it – they probably got some kind of official request for patients fitting a certain demographic/illness for your doctor to release your phone number. Patient confidentiality is not something lightly tossed around, even to the Federal Government. I do feel relieved that this someone is looking at the bigger picture though. Still, it’s freaky. :confused:

    • Anonymous
      September 20, 2007 at 9:24 pm

      a post by me from another thread.


      a few months ago a Ph.D. whistle blower from cdc was on tv & said the cdc knows both that the flu vaccine is near worthless & that an egg base is not the best. cdc is trying to find a non egg based vaccine. so someday we may be able to get an ineffective vaccine that is not egg based. sorry abt the last sentence but that’s where the logic goes and black humor makes me laugh. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      September 20, 2007 at 10:01 pm

      Dawn, that is so strange! What a phone call. It is hard to believe that your doctor would give them your number w/out asking your permission.
      And interesting that they would actually tell you not to vaccinate your son, when the party line is, gbs only happens once and the benefit of vaccine outweighs the risk. Well, I have already decided L won’t be getting any shots, and especially never Guardasil. And just a month before she got GBS, we were in for a check up and I was enquiring about it for L. The cost and the and the doctor saying she recommended waiting another year, was the only reason I didn’t have her vaccinated.

      Come to think of it, if we HAD gone ahead w/ it, I would probably now attribute the GBS to that! But she’s had no vaccines for several years, and no flu shot. So it wasn’t that for us either. (Flu bug set it off for her). I guess it is tricky figuring out what triggers gbs for sure. But I’m still not taking any chances.

    • Anonymous
      September 20, 2007 at 11:34 pm

      The CDC did not need the doctor to give them your phone number. If it’s for the “good of the country” they can have any information about you that they want. . .

    • Anonymous
      September 21, 2007 at 4:49 am

      I guess I look at this phone call as a good thing when I hear they are looking for a connection and it might protect someone in the future from going thru what I went thru. I look at the medical world and see all the cures and good things they are doing. I think while I am going thru my genealogy that if that person lived today, not only would our home be crowded but they would have been able to get a shot or antibiotic that might of saved their life. Due to the tests and machines that helped support me when I went on life support I am here to work on my family tree! They told me that if I would have got this 15 years ago I probably would not have made it. I am for research by phone to collect data to find that common thread. JMHO (Just My Humble Opinion). Second thought why didn’t they just use our message board for their researsh we are probably more apt to post personal information here for the world to read about our health and GBS/CIDP. Hopefully we have raised more questions here for them to base their reseach on! 😮

    • Anonymous
      September 21, 2007 at 8:10 am

      Good morning.
      I got my GBS from a flu shot in 06. I was told by more than 1 doctor to NEVER take a flu shot again. We need to remember the shot only protects us from last years flu. (Steve)

    • Anonymous
      September 21, 2007 at 8:43 am

      Just saw this article about the CDC and Flu shots…


    • September 21, 2007 at 10:19 am

      While I agree every avenue should be explored regarding connections of gbs to immunizations in the hopes of helping others, I do not agree that the doc should have volunteered my sons medical info to the gov without asking me first. There were no immunizations given to Kevin since he was 5, he was 9 when he got the gbs. The pediatrician knew this, she just filled out his school physical a week or so ago. What if Kevin ever wanted a gov job? I bet this info will forever follow him. Well, when the gov comes knocking for a draft notification, they better not selectively forget Kevin had gbs. Oh well. I am going to sit on this a while and decide what to do. It just seems that in the past year, four doctors have made serious mistakes in Kevins care, conversion disorder, cmt, four botched l/p’s after I said to stop on the third, the melatonin and now this.

      On the brighter side, we have the wonderful doc that made the proper dx and our wonderful doc that believed us and directed us to the proper docs. Our hospital care was great and ivig is a miracle drug for us. Most importantly, we have Kevie playing football! I can’t loose sight of that miracle!

      Dawn 😮

    • Anonymous
      September 21, 2007 at 10:53 am

      I would also double check w/your doc – that HE DID release that info….

      Docs should have to report ‘adverse reactions’ to blood products…per the FDA. But when it’s done in a hospital [the hosp has to report to the doc w/in X days and the doc has to report to the FDA w/in Y days, then the patient w/in z days…etc]. It’s usually not done tho. I learned that the hard way? Hospital either infused me with a bad batch [one kept at room temp too long] or substituted a non-prescribed brand [again notices SHOULD, by law be sent to all concerned but aren’t].
      Web up ‘FDA Blood Products’ and you will learn more than you will ever want to know about regs for the processing and distribution of IVIG, weakest link is from the pharmacy to the patient…Strange that.

      OK, IF your doc did report it…remember those ‘medical release forms’ you sign almost every time you go to a doc’s office? Well, that enabled the doc to release info to ‘approved’ sources. Also the doc’s office should have notes regarding the validity of that contact. You want to be sure that the person who called is well ‘pedigreed’? Not some researcher who’s lurking on the boards or the like and ‘fishing’ for patient info fodder.

      Check w/your doc…put your mind to ease. It’s my understanding that the FDA ‘usually’ contacts folks by LETTER, paper that goes thru the mail….for those privacy reasons exactly. Let us know what all happens!

    • Anonymous
      September 21, 2007 at 8:58 pm

      I just read Dr. Mercola’s site that said MERCK is trying to sell Gardasil which they are now trying to push for cervical cancer not only to young girls but also to YOUNG BOYS!!! Can you imagine how greedy they are!!

    • Anonymous
      September 25, 2007 at 2:18 pm

      WHO DID WHAT? Was the caller ‘legit’?

      IF not, I’d report it to your state medical board for privacy violations….PM me your state and I can find you fast the # to call.

      Wish I could do more to put your mind to ease.

    • Anonymous
      September 27, 2007 at 4:53 am


      Interesting – considering this came out so quickly after your phone call I doubt the studies are related but still – to say that no link between vaccines and neurological problems seem a bit broad reaching…