Oregon City a GBS Cluster?

    • Anonymous
      May 6, 2006 at 10:05 am

      Dear Friends:

      During our last local support group meeting, I found out there was a new case of GBS in my neighborhood. The person lived about four blocks away from me. Whithin a a ten block radius, we have had 6 cases of GBS in the past six years which is way higher than the accepted statistical probability. We have also had two cases of Kawasaki’s Disease in our neighborhood in the past five years. This brought the CDC into our neighborhood to find out exactly what is going on. Because GBS isn’t supposed to occur in clusters this is pretty strange, at first glance. When I talked with the lady from CDC, she said Oregon City has a pretty strange looking cluster of GBS as well as a whole host of other odd health problems including Polio, measles, mumps and Scarlet Fever. I asked the CDC lady if the cluster followed the path of Molalla Avenue within one mile of the road which runs through Oregon City. She looked at me strangely and asked how I knew that. I said that is where the ‘kissers’ live.

      The ‘Kissers’ is a local slang name for a church group in Oregon City that believes Jesus will return to earth in the near future and land on Molalla Avenue. They all live within a mile, by church decree, so that they can walk to the site where Jesus lands, apparently because cars and Jesus don’t mix for some odd reason. They also do not believe in doctors, antibiotics, or medicine of any sort. They belive in making their immune system strong by kissing on the mouth during their church services, hence the name. If this all sounds bizaare, it really is, but it is also true. Regular epidemics run through the church and the church members spread these epidemics to the rest of the community. Oregon City has the highest rate of Scarlet Fever in the United States as a result. I contracted Scarlet Fever in May of 2002 when the Kissers had one such epidemic and I had GBS a week later.

      I had to tell the CDC lady that I don’t think Oregon City is a GBS cluster, it’s just an infection cluster in general and it is the infection which causes GBS. It was good to know that GBS is on the radar of the CDC even if they couldn’t do anything about it.

      As for the Kissers, I don’t think Jesus is going to land on Molalla Avenue. Holcomb Boulevard, maybe, but not Molalla Avenue.


    • Anonymous
      May 6, 2006 at 10:16 am


      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, 😮

    • Anonymous
      May 6, 2006 at 5:03 pm


      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

    • Anonymous
      May 6, 2006 at 6:14 pm

      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.

    • Anonymous
      May 7, 2006 at 8:59 am

      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.

    • Anonymous
      May 7, 2006 at 12:58 pm

      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.

    • Anonymous
      May 7, 2006 at 4:09 pm

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


    • Anonymous
      May 7, 2006 at 5:00 pm

      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.

    • Anonymous
      May 7, 2006 at 5:47 pm

      Dear Aimee:

      I just assumed all cases of GBS were reported to the CDC on a routine basis. The CDC knew of more cases of GBS in Oregon City than I did. The four cases I know of involved 4 different hospitals, so getting that information if it isn’t reported would be pretty hard to get. I could be wrong though.


    • Anonymous
      May 7, 2006 at 5:48 pm


      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.

    • Anonymous
      May 16, 2006 at 12:18 am

      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?

    • Anonymous
      May 16, 2006 at 6:47 pm

      Dear Ted:

      It is pretty frustrating. There are times at work I feel like melting down on those demanding individuals who are needling me to get something done. But I don’t. Know one has even heard of GBS, and if they did, they don’t care.

      Which brings me to the subject about our local GBS support group meeting. It is on Saturday, May 20th at 1:30 PM at the Pioneer Community Center on 5th and Washington Streets. The site is fully handicap accessible and if you have special needs, there is a bunch of people willing to help out. We usually have around 20 or more people show up each meeting and it may be one of the few places where you can feel normal concerning your GBS. If oyu need directions, please PM me or e-mail me. I would love to meet you.


    • Anonymous
      May 16, 2006 at 9:00 pm

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

    • Anonymous
      May 16, 2006 at 11:13 pm

      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.

    • Anonymous
      May 17, 2006 at 12:04 am

      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.

    • Anonymous
      May 18, 2006 at 7:51 pm

      [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]

    • Anonymous
      May 18, 2006 at 8:03 pm

      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: 😡 😡 😡

    • Anonymous
      August 20, 2006 at 6:10 pm

      Dear Judith:

      I am bringing this thread up for you.