Oregon City a GBS Cluster?

Lee,

Since I know what you are talking about, this seems even stranger than strange. Thank goodness I didn’t wait for the big landing when I lived there. I know that you are a very sane person, so the “CDC lady” must have looked at you as if you should be sent to the ping-pong room for treatment.

Such is live, 😮

Hi,

I’m just trying to figure out how kissing would strengthen the immune system?! Perhaps the idea is to keep it busy exercising, dealing with all those infections.

I didn’t realise (or I forgot) that you’d had Scartlet Fever, Lee. I and my daughter got Scarletina (apparently it’s a milder version) but that was after GBS.

I think it’s good that your CDC is taking note of GBS, amongst other things.

God bless
Teresa

Just about the time you think you have heard of every thing the ‘Kissers’ come along. Incrediable. Thanks for letting us know that the CDC has GBS on it’s RADAR.

As on another thread.
Here in my area of northern England, a municipality/metropolitan borough, of some 180,000 people there have been 5 known cases of GBS in 7 months. No obvious connection. 4 female, 1 male. Ages ranging from 57 to 82.
:rolleyes:

Hi Lee,

It really is a strange thing about GBS clusters in your area. We had a few in the town where Frank and I lived while raising our sons. We also had a few
MS cases all of that from a 1 square mile little town called Bogota, NJ. Very odd in my opinion.

Does anyone know how the CDC gets its information..??? Are doctors required to report new cases of any kind of disease..???

Aimee

Hi Aimee,

I am just presuming this, I know Drs have to report certain diseases or syndromes to the CDC. I would bet that there is a list from the CDC and Drs have it or can call the CDC to find out what certain things need to be reported. I know for a fact that if you get GBS/CIDP from any Vaccine, it must be reported to the CDC along with the “Lot #” the Dr has from the manufacturer.

Hi,

I find Ken’s post very intriguing. 5 cases of GBS in 7 months equals an average of 8.57 cases in a year.

According to ‘official’ statistics, there are between 1 and 2 cases per 100,000 people each year.

So, within a group of 180,000 people, that is between 1.8 and 3.6 cases per annum. Yet the average that Ken speaks of equals 8.57 cases per annum. I personally think that this is a rather more realistic figure. Even though ‘officaldom’ quotes 1 to 2 cases in 100,000 per year.

GBS, in my part of the world, is not a notifiable disease – which I think is a pity because it stops proper identification of what exactly is happening.

I believe that if GBS (among other things) was ‘notifiable’ a very different picture would emerge and that picture might help towards discovering causes – not only for GBS.

In times past, I found an Internet site that gave a figure of about 8 cases of GBS annually per 100,000 people.

I am also aware that Ken stated “KNOWN cases of GBS”. I believe there are those who can get GBS without ever knowing it because it is mild though I suspect some of them wonder at times why they feel tired.

It drives me up the wall when the facts are supposed to adhere to an administrative system – just how blinkered and stupid is that? Why not renew the adminstrative system to cope with the facts? As an ex-admin person my personal opinion is that:

Admin has its place and it matters -though not as much as the actual events it covers. Its job is to find a system that can accurately reflect what is happening, which can help scientists and others by giving them facts and figures (ACTUAL figures).

Yet it seems that the facts have to be bent to meet the admin constraints. To me that is stupidity. Good adminstrators are worth paying for but anything other than ‘good’ equals constipation – that is a total blockage.

Lee-funny there are so many gbs’ers in oregon city-I’m in Salem and have never met anyone in person who has had gbs.Sure is awfully lonely out here!I’m glad the forum is back so I there is at least someone who understands that just because someone looks well it doesn’t mean they feel well. Pretty frustrating, huh?

I thought GBS is not a reportable illness. However, if a virulent virus causes this Oregon cluster. They should inform the public.:rolleyes:

My neuro never mentioned anything about reporting but after reading about the varrs program I felt I should for the sake of others who may have been affected.You see in 2005 I got a flu vaccine shot on November 7, had the flu on the 28th, had first numbness on December 17th, and was diagnosed gbs on December 21. The varrs lady called and said gbs could be a side effect of a flu vaccine but not according to the cdc. According to the cdc there is no correlation between the two. Coincedence anyone? I don’t know but no more influenza vaccines for me! I hope maybe my reporting in some small way may help someone else.

My father received his flu shot in November last year. He started showing symptoms within a week. Doctor, of course, said it wasn’t from the shot. It wasn’t until he progressively got worse and my web searching that convinced the local hospital neuro to send him elsewhere for treatment. Anyway, when I contacted VARRS to report it, I was told I needed the lot number of the vaccine. When I called the doctor for it they said they had already reported it. What I don’t understand is, they said they reported it as an adverse reaction to the flu shot. Since the doctor was not even aware that he had GBS, how would it ever be recorded. Not that I think they do much with the information anyway. You would think there would be some kind of follow up. I also saw those reports of 1 in a 100,000 and I never heard of GBS until now, but there seems to be alot more people with GBS than what they claim. Anyway, it’s great to see the forum back up and running as I don’t know what I would have done in fathers case. It was only through this forum that I gathered enough ammo to push the doctors in this direction. He is now doing pretty good considering his age. God bless everyone who endures this awful disease. It is certainly a sight I would never want to see again let alone go through. My car wears it’s ribbon proudly.

[FONT=Georgia][SIZE=3][COLOR=darkorchid]It’s my understanding, or maybe I’m wrong, too, that the nurse ask, before the flu shot is given, if the person being[B] given[/B] the shot has ever had GBS. Whether the flu shot syrum is ‘live’ or ‘dead’ virus, no shot should be given, in my opinion. A judgement call for everyone, I guess.[/COLOR][/SIZE][/FONT]
[FONT=Georgia][SIZE=3][COLOR=darkorchid]I was blown away, this past fall, when my Mother told me she was never asked if she had had GBS before her flu shot was administered. Mom asked the nurse why she hadn’t asked her (Mom) about GBS. The nurse said, “If you had GBS, you should definitely be getting the flu shot.” I asked Mom if she gave the nurse my number so I could clue her in on GBS. Heaven help some of those in the medical profession.[/COLOR][/SIZE][/FONT]

Oh Dear God Debi,

A medical professional at that, but it goes to show you that some medical professionals no nothing about GBS. Get her phone number, I’d like to tell her a thing or two myself. Grrrrrrrrrrrrrrr:mad: 😡 😡 😡