H1N1 - the girl who kicked the hornet's nest

**me2** · 11-26-2010, 03:41 PM

Originally Posted by Jack

). I think that if there was some simple mechanism linking an action with the onset of the disease it would have been noticed by now.

Don't be so sure Jack. There is a book about the story of the man who discovered the cure for ulcers and met with huge resistance from the medical community. (great book) He had the outright cure for this common ailment and was vilified and ignored - in modern times. I love science. I love doctors. But not always.
Here is a short version of the story.
Marshall Discovers Ulcer Cure

PS I had a bad reaction to a vaccine for the first time in my life and within weeks had a major flare- co inky dink ? Maybe, maybe not. I now avoid vaccines. Like you Jack, I tend to not catch bugs and so I place my bet on avoiding the co-incidence that did happen.

There are still simple and surprising discoveries to be made. Look at the story of Bactrim and WG relapse- direct observation by a practicing physician. I had the great pleasure of meeting him and hearing the story in Kansas City at one of the WG symposiums. The mechanism is still not understood but the fact is that staph infection is very likely to cause WG relapse.

**ScreaminMeanie** · 12-06-2010, 11:13 AM

I believe that my current flare was triggered by a flu shot (but it did not contain the H1N1 vaccine). The nurse flinched a bit as she stuck me, and I think the needle nicked a nerve. I had immediate and severe nerve pain originating at the inoculation site which within a week affected my entire upper left quadrant, and eventually affected my entire left side. Shortly after those pains began to resolve several months later, I started having "classic" WG symptoms, joint pain, etc. That was only the 3rd time I'd had a flu shot, and I had a bad reaction the first two times as well, but they were more like having a mild version of the flu.

Even more interestingly, I got another flu shot this year, at the urging of my rheumy (and, being prone to the flu anyway, I do NOT want to get it while my immune system is suppressed). Was on 20 mg/wk mtx and 15 mg/day of pred at the time. Had zero reaction to the shot. My guess is that the immune suppressants kept my body from freaking out this time.

**Jack** · 12-06-2010, 09:38 PM

I think we are all on the lookout for the cause of the original disease or flares and various people have highlighted immunisation, stress, exposure to pollutants and infections as being responsible. The trouble is that all these things are a common part of today's lifestyle and everyone seems to have a different story to tell. From what I have read over the years on this forum there is no very obvious common factor. I'm sure it must just come down to a genetic predisposition to the disease that can then be triggered by any number of stress factors.

**ScreaminMeanie** · 12-07-2010, 02:02 AM

Originally Posted by Jack

I think we are all on the lookout for the cause of the original disease or flares and various people have highlighted immunisation, stress, exposure to pollutants and infections as being responsible. The trouble is that all these things are a common part of today's lifestyle and everyone seems to have a different story to tell. From what I have read over the years on this forum there is no very obvious common factor. I'm sure it must just come down to a genetic predisposition to the disease that can then be triggered by any number of stress factors.

I think you're absolutely right, Jack. It's hard not to look for those triggers, though, if it's something that can possibly be avoided! I know I was also under a ton of stress for a year or more leading up to my flare. Sudden and unexpected death of a close friend, my husband's loss of income, breast cancer scare, illness and death of a most beloved pet. The first time I got it I had also been through a lot of stress leading up to onset of symptoms - death of a parent, divorce, moving twice in 6 months. There was no flu shot, but I did get a B12 shot right before I started having symptoms.

**Jack** · 12-07-2010, 02:40 AM

I was going through a stress free period when I had my first symptoms, but I had recently had several immunisation shots and was swimming in what I now know to be polluted water. We all have different stories.

**marta** · 12-08-2010, 04:12 PM

I have been interested - especially since I got this stinky flare - what is it that started this whole ball rolling. For me personally, I am quite certain that I have found the answer. I am 95+% sure that it was indeed the H1N1 shot. I had a very stress free, healthy lifestyle just before the onset of the symptoms, yes there was the usual family and work stuff, but nothing out of the ordinary or that I couldn't handle, lots of healthy extracurricular activities, lots of fresh, clean mountain air.

I had not thought of it before but the connection between onset and this flare is uncanny, besides it is the ONLY thing that is the same in my life between the start and now. The ONLY thing. I also just spoke last week with another Wegener's patient who, like me, got her first symptoms two months after getting the H1N1 shot last year. I do believe that I was predisposed to an autoimmune problem and the trigger was a vaccine that bolts your immune system into total hyper overdrive, and then it (the immune system) doesn't know how to stop working and poof, Wegener's.

I was just curious when I started this thread if anyone else - especially the newly diagnosed or the recently flared (since the vaccine - this go around - has only been around for the last year and a half or so) had made any connections between getting this particular vaccine and seeing symptoms. I will definitely not touch the H1N1 shot with a ten foot pole anytime in the rest of this lifetime. I will continue to get flu shots while on immunosupressants, but that's it. I have learned a valuable lesson and I know it's my own lesson, but it's a lesson nevertheless.

It's been interesting reading this and also talking to some other Weggies outside of this forum on this particular question. I know, I'm constantly asking questions. Constantly, hopefully you don't get tired of me and stop answering them the day I really need an answer.

**Jack** · 12-08-2010, 09:36 PM

I contracted the disease 25 years ago. I don't think there were even seasonal flu vaccines available then.

**elephant** · 12-08-2010, 11:09 PM

Marta, I know this was mentioned before...I wonder what was in the H1N1 vaccine...what kind of chemicals "preservatives" besides the H1N1.

**Sangye** · 12-09-2010, 01:58 AM

Here is info about the swine flu vaccine that might answer some of your questions (and raise others).

Here's an excerpt from the article:

"Oil-in-water adjuvants (squalene) have not been licensed in the U.S., although they are used in some inactivated vaccines marketed in Europe and other countries (live virus vaccines do not contain adjuvants). Many inactivated vaccines in the U.S. contain licensed aluminum-based adjuvants added to increase production of antibodies in an effort to make vaccines more effective at preventing infection.

Oil-based adjuvants (MF-59 and AS03) manipulate and hyper-stimulate the immune system to mount a stronger immune response to the lab-altered virus or bacteria contained in vaccines. However, the use of squalene type vaccine adjuvants, which were allegedly added to experimental anthrax vaccines and made Gulf War soldiers sick, is controversial.

Oil based adjuvants may increase the risk for vaccine-induced chronic inflammation and autoimmunity in some children and adults genetically predisposed to atypical inflammatory responses and autoimmunity. No published scientific studies have examined whether those already suffering with chronic inflammation associated with brain and immune system dysfunction may be at special risk.

U.S. health officials are expected to by-pass normal FDA licensing procedures and include oil-in-water adjuvants in some swine flu vaccines released for public use."

(Note that I didn't create the links in the quoted text. It's in the original article)

Further on it notes that thimerosol (mercury) is an ingredient in the multi-dose vials.

They're required to note the lot number of your vaccines in your medical chart. You can get that number and then find out the exact ingredients of the vaccine you received. You'll have to do some research to get it. You can look up the exact ingredients of any other licensed drug but when it comes to vaccines, no. Interesting, isn't it?