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View Full Version : H1N1 - the girl who kicked the hornet's nest



marta
11-21-2010, 01:52 PM
Here goes.

Based on a comment by Sangye about the my liver enzyme issues, I've been thinking about a commonality between when I first got sick and this latest flare. My life right now is very very very different from before I got sick. I have come up with only one thing that is the same. H1N1. Arrrrgh!!!!

I think vaccines are OK (they have brought our society out of the dark ages - when done properly), flu shots I've never considered and thought of only as something for old people and sick people (of which I am one now) but the H1N1 Global Chicken Little knee jerk reaction really got my goat last year. Every fibre in my being told me it was wrong, but after months of abstaining, I got guilted by society into giving it to my daughter. I thought it would be very irresponsible parenting of me to give her something I don't believe in and not get it myself, so we went in and got the damn shot.

I just went in and checked when I got it with our Health Unit, and it was two months before my symptoms appeared. I just had a flu shot on October 14 (in which they are sneaking the h1N1 vaccine) and started getting symptoms two days after which have lead into this horrid flare. On a side note, I just got a call from my doc telling me to stop the cyclophosphamide as my liver enzymes are now in the high 300's for ggt and 150 for alt. So no WG treatment for me as of today. I'm totally bummed, but I'm straying.

So any of you newly diagnosed Weggies get the H1N1 shot before getting the WG speach by your diagnosing doctor? Just curious.

I remember sitting on my couch after getting the shot in November last year thinking that this is a life changing day. I had eventually dismissed that thought until I remembered it a few days ago after making the connection based on Sangye's comment about something triggering the liver enzymes that might also be triggering the Wegs.

H1N1 Hornet Nest.

pberggren1
11-21-2010, 01:58 PM
I don't think I ever got the H1N1 before being dx, at least as I can remember as an adult and going back to probably when I was 7 to 10 or so. I did get the flu shot once in 2004 after seeing my new Rheumy. She was quite adamant about me getting it, so I went and got it.

Marta, again I am worrying about you. Please just have your local doc contact my docs office to see what might be possible.

onatreetop
11-21-2010, 02:29 PM
I had the shot last year but cant this year the steriods are to high of a dose still. No vacs for me til they get down by half at least. I remember feeling not well a few days after more tired than anything. I got it after the dxds. Never had one before. My doc told me if he did it I would most likely get it bad.

elephant
11-21-2010, 02:37 PM
I had no reactions to flu or H1N1 shot. I never use to get the flu shot. First Flu shot was two years ago after diagnosis of WG.

Sangye
11-21-2010, 03:07 PM
I haven't taken any vaccinations since I was in the Peace Corps in the late 80's, when we were loaded up full of vaccinations in a very short time. I had a reaction to the typhoid vaccine within a few hours. During my 2 years in the Peace Corps we had to have further vaccinations. My WHO vaccine booklet that I've had since childhood actually has pages stapled into it, all due to just 2 years.

My immune system was always very strong but never again had the same resilience once I got home. It was a concern to me for the entire 17 years preceding my first Wegs symptoms. In my case I think the vaccines got the ball rolling and other toxic exposures put me over the edge.

Lightwarrior
11-21-2010, 04:22 PM
I had an H1N1 and seasonal flu last year two months before dx and I gave over 100 vacinations to other health care workers in that time frame, including the nasal spray which was live virus. I always get a flu vaccine, except for this year... it just feels wrong.

Jack
11-21-2010, 09:28 PM
I always have the seasonal flu shot and also had H1N1 last year and this (combined) with no reaction whatsoever. However, I did have a bunch of vaccines a couple of months before I had my first symptoms since I was going to work abroad and it was a condition of my work's insurance. I also then went on to swim in what I believe to be polluted sea water in the bay where I was staying.

The trouble is that each of us is grasping at a reason for getting this disease. For some it coincides with vaccines (to be expected because they are so common) and for others it is pollution (to be expected because it is so common ;) ). 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.

Sangye
11-22-2010, 12:10 AM
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.
Not necessarily. While my holistic docs have always immediately asked about prior infections, toxins (including vaccines) and food sensitivities, my medical docs have only asked about infections. I've even told the MDs my history and they shrug it off (literally). They deliberately ignore it and it doesn't even appear in the clinic notes along with my other spoken history.

If they're not asking, the answer won't magically surface especially since the connections are not always apparent to the patient.

Look at the 3 examples in this thread: Marta, Lightwarrior and Jack-- all 3 had vaccines 2 months before their first symptoms appeared.

elephant
11-22-2010, 12:42 AM
Sangye, it is true...look how long it took many of us to finally get diagnosed, because the doctors did not connect the dots.

Lightwarrior
11-22-2010, 03:10 AM
I don't think that the vaccine gave us Wegeners, most of us had symptons for a long time before we were diagnosed. I think it is possible that the vaccine may have been the trigger that kicked Wegs into high gear.

Jack
11-22-2010, 03:19 AM
I think we are probably all referring to different vaccines too. I don't think you can just put them all under one heading. However, perhaps this fits in with the theory that it can be triggered by infection? Some of the effects of vaccine are to trigger the same areas as infections.

renidrag
11-22-2010, 05:23 AM
I was diagnosed in August 09 and had never had a flu shot. Nor had I ever been ill. I did have H1N1 last fall with no side effects and the shot this fall with no side effects. The shot this fall was when I was (and still am) drug free.
Dale

pberggren1
11-22-2010, 06:38 AM
Nice to hear that you are drug free Dale.:w00t:

marta
11-22-2010, 06:44 AM
I know, I'm grasping at straws. It was Sangye's comment that forced me to look at corellations between this flare and just before diagnosis. This is the only corellation I have found. I was thinking more for people who have been diagnosed within the last year as that's when the H1N1 vaccine was very quickly designed and mass produced and the WHO Chicken Little fiasco came into being. I've heard that this particular vaccine really kicks your immune system into activity (moreso than other vaccines - despite it not being a live vaccine) and a hightened immune response is probably something that if you're on the edge of an AI disease or have some predispositions might be the straw that breaks the camel's back.

I just read this -

"Swine flu is not a new virus. In 1976 there was a spread of infections of the same virus and the government set a large vaccination program in motion. Millions of Americans were vaccinated, but many suffered adverse events such as Guillain-Barre Syndrome. GBS is a neurological disorder where nerve damage can result in paralysis and loss of muscle function, potentially causing death. The vaccination program was abandoned after three months." GBS is another autoimmune disease.

elephant
11-22-2010, 08:03 AM
They talked about it here in the States about H1N1 vaccine. Even the vaccine today that we get...can still have a very, very....small chance of getting GBS.

Sangye
11-22-2010, 10:38 AM
Vaccine damage can come from the microorganism injected or from the adjuvants (other ingredients) used in the vaccine. Many vaccines use similar adjuvants. For example, formaldehyde and ethylene glycol (antifreeze) are common to many. Formaldehyde is a known carcinogen and ethylene glycol a known toxin. Substances like this are not easily detoxed using the body's natural detox pathways, so they could accumulate with each additional vaccine. This wouldn't necessarily cause side effects quickly, but holistic docs believe their presence could be a constant aggravation to the immune system and other tissues (eg nervous system, liver).

I think it's useful for us to explore what may have caused our Wegs in order to guide future decisions. In my case, since I believe the Wegs was clearly due to toxins it motivates me to avoid further toxic exposure. If someone believes infection was the source of their Wegs, they might also want to limit toxic exposure, since toxins might have made them more susceptible to the infection in the first place. It's all about being informed and making decisions from there. Beyond that, I see no reason to spin my wheels about what caused my Wegs.

pberggren1
11-22-2010, 11:57 AM
Sangye, you wont have to spin your wheels if you have winter tires.:laugh:

LisaMarie
11-22-2010, 03:56 PM
Ok iI had the flu and pnuemonia vaccine before they let me out of the hospital and it was more of a demand than a request.....at my job if u do not have the flu shot you wear a mask all flu season long...HCA's rules.....a good friend of mine died from H1N1 last winter and left behind 4 children with no other living parent 12yr, 10,yrs and twins 9yrs...so i guess this year i more pro vaccine than before.....just like our lovely cocktails ....what choice do we have...it just might work for some of us....one of us atleast....i'ld be happy with a cocktail that will put me in remission and keep me there.......lol......and that they tasted better...lol

elephant
11-22-2010, 10:17 PM
LIsaMarie, I'm so sorry you lost your friend to H1N1, how are the children?

Sangye
11-23-2010, 01:12 AM
That's very sad....

We each need to do what we feel is best when it comes to any medication, including vaccines. I don't agree that we have no choice, though. We have plenty of choices and have to weigh the risks and benefits to decide on them. Like with any other major life decision, you make the best informed decision possible and you don't look back. That's what I do, anyway.

Psyborg
11-23-2010, 02:04 AM
My guess is like everything else in medicine the belief would be that a few of us being harmed by a vaccine are "worth it" if the majority are protected by it? It is an interesting theory, as I also received the H1N1 vaccine last year before they'd let me out of the hospital after a surgery. I'm guessing the difficulty here would be establishing a positive link between the vaccine and the disease. Especially given that the medical establishment, CDC, and WHO would all be inclined to deny any link.

Sangye
11-23-2010, 02:12 AM
Holistic docs question the part about the majority being protected by it. The science of vaccines and their efficacy is not as solid as we are led to believe. Not surprising, since the same people who profit from them are the ones doing the research.

Psyborg, I don't question your choice in taking the vaccine, but I'm wondering why you said "before they'd let me out of the hospital." You have a right to refuse any medical procedure, including vaccines.

Psyborg
11-23-2010, 02:25 AM
You are right of course. I was told that due to the surgery I'd be particularly susceptible and should take the vaccine, never having had a problem with a vaccine before I went ahead.

Now mind you I was also in the military when I was fresh from High school and had a lot of way more obscure vaccines (Nerve Gas, Anthrax, Gama Gobulin, Typhoid, etc) before they shipped me off to the middle east. I've suspected that one of those were possibly the cause of my liver issues, but again I have 0 proof. But having no family history if liver issues, and having liver issues diagnosed almost immediately after getting out I am suspicious. Weirdly that's not a malady that has been associated with gulf war syndrome so I feel like I'm barking up a tree if I try to do anything with the VA though.

Sangye
11-23-2010, 02:32 AM
Wow, there's a nerve gas vaccine? I didn't know about that one. Yeah, before you even mentioned the liver connection, my antennae went straight up. I wonder if elevated liver enzymes are associated with Gulf War syndrome. I feel so bad that happened to you, regardless of how it happened. :sad:

LisaMarie
11-23-2010, 03:39 AM
LIsaMarie, I'm so sorry you lost your friend to H1N1, how are the children?
Coping the best they can they live with hteir Grandma who has cancer and is on o2......she still smokes so it is an interesting environment...but she loves them more than anything in the world......so we help as we can but they are a proud country family and only accept help when it is desparately needed......I pray every day that the good Lord watches over them...they have had a rough life....

elephant
11-23-2010, 03:44 AM
So sad thier grandma is sick, but happy they are loved by her. Thanks for sharing LisaMarie.

Psyborg
11-23-2010, 04:23 AM
Wow, there's a nerve gas vaccine? I didn't know about that one. Yeah, before you even mentioned the liver connection, my antennae went straight up. I wonder if elevated liver enzymes are associated with Gulf War syndrome. I feel so bad that happened to you, regardless of how it happened. :sad:

Not sure the nerve gas thing was a vaccine so much as an antidote that we took. But it was along with everything else. I do know that people have had bizarre reactions to gamma gobulin as well. And anthrax I can't imagine isn't a risky vaccine given what it is.

I was honestly extremely overweight as of a year ago. Not now at all due to the bypass surgery, it wasn't until I started to get health that the Wegs hit me, great luck there :p. So I think that regardless they will blame my physical poor condition for the liver issue, though honestly most people that are overweight never develop anything beyond fatty liver. I have full on cirrhosis and never had a liver enzyme test that was more that +15...most people that develop cirrhosis have enzyme levels of +200 or so as I understand it.

Sangye
11-23-2010, 09:36 AM
We had to have gamma globulin vaccines every 3 months in the Peace Corps. It was long before I was into holistic medicine, but I remember having a real aversion to taking all those vaccines. That was 1986-88, before you heard about vaccine controversies and damage. I just had a strong gut feeling that they were harming me.

Did they find any evidence of fatty liver in a biopsy? Extreme fatty liver can lead to cirrhosis, but it's a gradual decline.

Psyborg
11-23-2010, 12:40 PM
I believe so...so in all likelihood that was the cause of the liver issues. That said losing weight actually had the liver healing, I really want to be careful of meds for that reason. It was normal size again (was significantly enlarged before) and my enzymes are completely normal now. Still i wonder...there are plenty of overweight people in the family but I'm literally the only one to develop any liver issues.

coffeelover
11-23-2010, 02:26 PM
I get teh flu shot yearly and got the H1N1 shot last year (forgot about it so far this year). I have no fear of these vaccines and highly recommend all you immunosupressed individuals get these whenever possible

me2
11-26-2010, 02:41 PM
). 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 (http://www.metamath.com/math124/statis/Marhelio.htm)

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, 10:13 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, 08:38 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, 01:02 AM
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, 01:40 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, 03:12 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, 08:36 PM
I contracted the disease 25 years ago. I don't think there were even seasonal flu vaccines available then.

elephant
12-08-2010, 10:09 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, 12:58 AM
Here (http://www.nvic.org/vaccines-and-diseases/h1n1-swine-flu.aspx#vaccine) 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 (http://www.vaccine-a.com/intro.html) 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 (http://www.fda.gov/downloads/AdvisoryCommittees/CommitteesMeetingMaterials/BloodVaccinesandOtherBiologics/VaccinesandRelatedBiologicalProductsAdvisoryCommit tee/UCM172424.pdf) 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? :glare:

Psyborg
12-09-2010, 02:20 AM
Hmmm...that seems pretty incriminating, back to wondering on my military vaccines again.

Sangye
12-09-2010, 02:38 AM
Yes, this is the kind of thing that keeps holistic docs awake at night. Many people say "I didn't have a reaction to a vaccine" but have no idea how the ingredients are grinding on their immune system (or other tissue), even for years. Is today's flare caused by last year's vaccine? Maybe. Could a history of vaccination determine why some people have a harder time getting into remission or off pred? Maybe.

We can't tell for sure unless it's an immediate vaccine reaction. Holistic docs believe anything you do to the body affects it positively or negatively. Injecting formaldehyde, antifreeze (ethylene glycol), mercury, viruses, squalene (or oil-based adjuvants) and a long list of other nasty stuff in just one vaccine is not benign. Does the risk outweigh the benefit? Maybe, maybe not.

me2
12-09-2010, 03:01 AM
It is a complex study. My doctor the scientist says that science is very good at finding common causes but the more unique something is science is ill equiped to deal with. What he means is that if something like a vaccine causes an effect in 9 out of 10 people then science can easily discover the link. But, if it causes a problem for one out of ten people science has trouble identifying that.
This leads me to the complexity of what may cause WG and WG relapses. I suspect that a vaccine caused relapse for me. I do not get seasonal vaccines for that reason. It is a gamble either way. We all take our best shot and hope for the best.

elephant
12-09-2010, 01:31 PM
Thanks Sangye for the information on the vaccines. Very interesting though...

Sangye
07-21-2011, 02:21 AM
I found this Vaccine Ingredient Calculator (http://www.vaccine-tlc.org/) on a website I like. It lets you see the exact ingredients (and the amount) in the Seasonal/ H1N1 Vaccine. When you do, you'll get to this page (http://www.vaccine-tlc.org/qv/flu.html), which is just jaw-dropping. Hover your mouse over each red dot to see the actual amount of that ingredient.

Chris G
07-21-2011, 04:18 AM
I've seen several discussions in this forum about this topic, but I have not commented on them until now. I realized that my big wg flare in November, occured post flu vaccine, which I received in October. Coincindence? I'll never know. But I did have flu vaccinations in the years prior, without a wg flare. It leaves me wondering what to do come fall.......with a crippled immune system.....going into a Michigan winter, with two young boys who seem to be germ magnets.

Is it the addition of the H1N1 component that you feel may have an affect on weggies?

Sangye
07-21-2011, 05:40 AM
Chris, I can't tell you whether or not you should take the flu shot again. I can tell you that whether or not you get the shot, there are several things you can do to reduce your chances of getting flu or at least minimize the severity if you do get it. Vitamin D deficiency has been strongly linked to flu. Make sure your doctor orders Vit D levels with your labs. I suggest you start now since it can take a few months to build up your levels if you're deficient. Dr Seo checks my Vit D level every month. It took a long time to get my levels into normal range. Last fall my levels fell but I didn't find out for a few weeks. During that time I got a terrible cold.

It's normal for kids to get some colds, but they shouldn't be germ magnets. If they're getting more than 1-2 colds a year, something is wrong. There are many things you can do to strengthen their immune systems.

NicShaf
07-21-2011, 06:28 AM
The first flu shot I ever had was right after I was diagnosed with Wegs, but before I started CTX. I'd always avoided needles like the plague before Wegs, if it wasn't a necessity of life or death, I wouldn't have done it. But I think it’s an interesting...and scary...theory.

marta
07-21-2011, 07:00 AM
Thanks Sangye, quite enlightening.... although they don't mention the Squalene in there.... hmmmm.

Chris, I'm sure it was the flu shot this fall that made me flare. It had the H1N1 vaccine in it this year for the first time ever. I had my initial symptoms two months after getting the actual H1N1 shot and then only days after getting the flu shot last fall did I start getting the original symptoms and within two weeks I was back in the hospital. So for me personally not so much the flu shot but the H1N1 shot. Needless to say I"m staying as far away as possible from that bad boy.

Psyborg
07-21-2011, 09:43 AM
I too had the H1N1 vaccine in the late fall, a few months before I got sick. I wonder if any one of the specific vaccines is more likely than others? I wish I knew which version I had at the time.

Sangye
07-21-2011, 12:16 PM
Marta, the US doesn't use squalene in the H1N1 shot. I don't remember if we use it in other vaccines. That website says if we do.

Sangye
07-21-2011, 12:16 PM
I too had the H1N1 vaccine in the late fall, a few months before I got sick. I wonder if any one of the specific vaccines is more likely than others? I wish I knew which version I had at the time.
Bob, your doctor will have the name of it in your chart.

Kathie28
07-21-2011, 12:36 PM
I had the H1N1 vaccine about 6 months before I had symptoms of Wegs so I'm not to sure that was the actual kicker for me but who knows. I did get toothpaste in my eye a couple of weeks before everything started which caused an eye infection. I also got a sinus infection about that same time. I wonder if a toxin in the tooth paste was the trigger. It would be so nice to have an answer to the why.

malin
07-21-2011, 06:26 PM
I can count the vaccines that I've had on one hand, most of them are the type of vaccines you get as a baby :p

Never had the flu vaccines before my Wegs symptoms started, I only got the flu vaccines AFTER diagnosis and leading up to my first symptoms of Wegs, nothing at all happened to me. No infections, no known exposure to anything unusual and toxic, not even a "normal" cold. Also leading up to Wegs, the worst illness I ever had before was probably like chickenpox and then just the odd cold. I used to be a very very healthy kid.

So for me, I can't see any cause of my Wegs at all I just believe that I was unlucky and there was nothing I could have done differently.

freakyschizogirl
07-21-2011, 08:16 PM
Snap with Malin, I didn't have any vaccines leading up to dx. I only had the flu and swine flu jabs last year as they are recommended if you are immune compromised. I was relectuant to have the swine flu jab but the nurses at my surgery rarely take no for an answer and in the end i felt like maybe i was being reckless not having it as i knew people who'd had swine flu.

In the 3 years following up to dx i did have a lot of infections and didnt really think much of it...i went from tonsilitis, cystitis, eye infections, a boil...basically any time i visited my doctor was for anti biotics. Sometimes i'm surprised she hadnt already written out the perscription before i walked in the room!

I can sit for hours thinking about my time leading up to finally being diagnosed and what the trigger could be. I remember the first day of symptoms cos it was so outta the blue...i was sitting having breakfast and all done up for work as we were having a 50's/60's/70's dress up day and i was quite excited cos i love dressing up (any excuse with me!) During breakfast my nose started to bleed and didnt stop and was literally POURING with blood...scared the hell outta me - i was literally standing over the kitchen sink not knowing what to do.
Following that i had lots of pain in my nose and then followed the crusting. But these things come on so slowly you dont really notice til they get bad. My GP only refered me to ENT when i had trouble breathing at night from the crusting and this caused me to snore.

I'll never know what triggered my Wegs. The only regret i do have is that i didnt push for better care when i was being pushed around from one ENT to the next with no real answers and that it didnt take my perforation and saddle nose to finally diagnose me.

malin
07-21-2011, 08:29 PM
Another thing that interests me is that alot of people have symptoms for years/half a year before finally getting a diagnosis, with me everything happened very very fast. It only took less than 2 months from my first symptoms until I was diagnosed. During this period I went from my ears feeling a bit stuffy (thought it was just ear wax) til lying in a hospital bed completely deaf and feeling so ill I could barely go to the toilet on my own! My mom had to help me get showered etc...

I'm just amazed at how different Wegs can be between people. I mean it can be this long outdrawn process or it can be so acute and immediately life threatening that every single minute counts. :/

Psyborg
07-21-2011, 09:12 PM
Bob, your doctor will have the name of it in your chart.

I ended up getting it post-surgery before leaving the hospital. I'd have to get my chart from them rather than the doctor. (I think)

Jack
07-21-2011, 09:29 PM
Hind sight is a wonderful thing isn't it? I wish that the internet had been available when my first symptoms appeared because for nearly two years I was treated for sinus problems when it should have been obvious that this was not the problem. The ENT pretty well dismissed the other symptoms I was displaying - joints, skin, eyes, although I did have referrals for these which all came to nothing. None of the specialists seemed to put the whole picture together and consider what was happening to my body as a whole.

I think that these days there is less excuse for doctors failing to diagnose Wegener's even though it is still rare.

drz
07-22-2011, 06:42 AM
Hind sight is a wonderful thing isn't it? I wish that the internet had been available when my first symptoms appeared because for nearly two years I was treated for sinus problems when it should have been obvious that this was not the problem. The ENT pretty well dismissed the other symptoms I was displaying - joints, skin, eyes, although I did have referrals for these which all came to nothing. None of the specialists seemed to put the whole picture together and consider what was happening to my body as a whole.

I think that these days there is less excuse for doctors failing to diagnose Wegener's even though it is still rare.


My experience was same as Jacks. Saw at least a dozen different doctors, most of them several times for routine care for my diabetes and my complaints about the same GPA symptoms. I was scheduled to see three more specialists when it all collapsed and I ended up in the hospital where I was misdiagnosed and treated for three problems I did not have. Only two doctors, a podiatrist and optometrist, neither were a MD, during this time hinted I might have some underlying disorder like lupus or some systemic disorder. I had hand surgery for Duprytrens Contractures at Mayo during this time and asked my surgeon about cramps and joint pain and it was passed off due to my other disorders. Maybe if I had pushed for a referral to another department for a more through evaluation I might have got correctly diagnosed a couple years earlier but none of my other evaluations had turned up anything to explain my symptoms and I never dreamed that things like joint pain could be related to an eye problem and nose bleeds and no one else did either except for those two doctors I mentioned.

jola57
07-24-2011, 11:13 AM
The only probable cause of getting wegs (I will always call it that) that I have heard of is untreated infection. Mine can be my burst appendix. Yes, hindside is great but the reality is we still do not know what causes wegs and untill we do we will always look for reasons why.

Sangye
07-24-2011, 11:44 AM
Somehow this thread topic has turned into What Caused My Wegs. I think it's still salvageable as a discussion about the H1N1 shot so I'm gonna throw down a Putin. LOL

:back on topic:

marta
08-09-2011, 05:23 PM
Hey gang, just writing an email to a CBC reporter on this exact topic. He's doing a story about it and I got hooked up with him through a BBC reporter who knows Brian. I've been digging a little deeper with this, and apparently our government in their infinite wisdom aproved the squalene adjuvant which the FDA did not alow the US to have in theirs. That's the adjuvant associated with the Gulf War Syndrome as Sangye's earlier post showed (an aray of AI diseases), but our government and a few in Europe (Sweden, Norway, and a couple more) thought that the risk/benefit was worth 'protecting us all'. So it makes sense that those of you in the States didn't see anything as well as those in England. It's us lucky Canadians, and a couple of Weggies I've spoken to in Sweden, so who knows. I'm still convinced that this is where the ball dropped in my particular case, and I feel slightly betrayed by the folks who are supposed to keep us safe.

Sangye
08-10-2011, 01:00 AM
Yes, squalene is highly controversial. If you go to www. nvic.org (National Vaccine Info Center) and put squalene in the search box, you'll get lots of good articles about it.

I understand your feeling of betrayal, Marta. Any of us who've been damaged by vaccines feel that way. :sad:

julia
08-10-2011, 07:45 AM
Heard on the radio today that the flu season in the southern hemisphere this year is pretty mild.(so far). That has in the past been a pretty good indicator of how the flu season will be here in the U.S. They also said that some university I believe in Texas is working on a Vaccine that will fight all or most influenza for 5 to 10 years. They said it targets influenza in general and not a specific strain.

I do not want to get a flu vaccine this year and the fact that they are calling for a mild season makes my choice easier.

pberggren1
08-11-2011, 08:39 AM
I hear ya Marta. I have to get the meningococcal vaccine if I want the Implants.

I hate to say this but our modern medical system has been hijacked by the elitists of the world to gain a better control over the whole population. Kind of like media and other big businesses.

Sangye
08-11-2011, 12:18 PM
Phil, you mean it's a requirement for you to get the vaccine??

pberggren1
08-11-2011, 04:35 PM
Yes it is Sangye. At least that is the way I understood it. With no hearing it is difficult to communicate with others. My doc hear said it would be safe to take because it is the dead vaccine. He said I should stay away from all live vaccines. He did say though that he doubts the vaccine will do any good. The surgeon said I would be on antibiotics before, during, and after the surgery just to be safe. He said infections are extremely rare. He said he has had only one other really complicated case like me and the implants were very successful. He said too if I have any questions just fax them to his office and he will get back to me.

Sangye
08-11-2011, 11:36 PM
That's ridiculous, especially given the fact that it's not even likely to work.

pberggren1
08-12-2011, 05:52 PM
I agree and I will be discussing this again with my doc on the 19th.

pberggren1
10-14-2013, 08:04 AM
Here is something my friend posted on facebook recently.

The verdict is out on flu shots. Many medical experts now agree it is more important to protect yourself and your family from the flu vaccine than the flu itself. Let’s take a look at the reasons behind this verdict:

1.) There is a total lack of real evidence that young children even benefit from flu shots. A systematic review of 51 studies involving 260,000 children age 6 to 23 months found no evidence that the flu vaccine is any more effective than a placebo. Also the shots are only able to protect against certain strains of the virus, which means that if you come into contact with a different strain of virus you will still get the flu.

2.) Medical journals have published thousands of articles revealing that injecting vaccines can actually lead to serious health problems including harmful immunological responses and a host of other infections. This further increases the body’s susceptibility to the diseases that the vaccine was supposed to protect against.

3.) Ever noticed how vaccinated children within days or few weeks develop runny noses, pneumonia, ear infections and bronchiolitis? The reason is the flu virus introduced in their bodies which creates these symptoms. It also indicates immuno-suppression i.e. lowering of the immunity. The flu vaccines actually do not immunize but sensitize the body against the virus.

4.) Its a known fact that Flu vaccines contain strains of the flu virus along with other ingredients. Now think about the impact such a vaccine can have over someone with a suppressed immune system? If you have a disease that is already lowering your body’s ability to fight a virus, taking the flu shot will put your body in danger of getting the full effects of the flu and make you more susceptible to pneumonia and other contagious diseases.

5.) The Flu vaccines contain mercury, a heavy metal known to be hazardous for human health. The amount of mercury contained in a multi-dose flu shot is much higher than the maximum allowable daily exposure limit. Mercury toxicity can cause memory loss, depression, ADD, oral health problems, digestive imbalances, respiratory problems, cardiovascular diseases and many more such serious health ailments.

And what about the elderly? Can the flu vaccine help them?

6.) There is mounting evidence that flu shots can cause Alzheimer’s disease. One report shows that people who received the flu vaccine each year for 3 to 5 years had a 10-fold greater chance of developing Alzheimer’s disease than people who did not have any flu shots. Also with age the immune system weakens, thus lowering your ability to fight off infections. Introducing the flu virus in the bodies of elderly could have dangerous consequences.

Can we trust the authorities who are promoting the wide-spread use of flu vaccines?

7.) The Center for Disease Control appoints a 15-member Advisory Committee on Immunization Practices (ACIP). This committee is responsible for deciding who should be vaccinated each year. Almost all the ACIP have a financial interest in immunizations. It’s all about the money and may have very little to do with your health and well being. The very people pushing these vaccines stand to make billions of dollars. This itself creates a doubt on how effective these flu vaccines really are?

8.) Research shows that over-use of the flu-vaccine and drugs like Tamiflu and Relenza can actually alter flu viruses and cause them to mutate into a more deadly strain. Couple this with drug resistant strains and you have virtually no benefits with much risk.

9.) There is enough evidence that shows that the ingredients present in the flu vaccinations can actually cause serious neurological disorders. In the 1976 swine flu outbreak, many who got the flu shots developed permanent nerve damage. Flu vaccines can contain many harmful materials including detergent, mercury, formaldehyde, and strains of live flu virus. Is this what you want to put in YOUR body?

10.) Trying to guess what strain to vaccinate against each season has proved to be no more effective than a guessing game. This has been very true in recent years with the H1N1 strain. Moreover getting multi-shots will only prove more dangerous as different strains of viruses and harmful ingredients are introduced into your body.

Flu shots are indeed more dangerous than you could think, and it is best to rely on natural ways to protect against the flu rather than getting yourself vaccinated.

Isn’t it interesting that the main stream public health officials never promote the various proven ways to avoid the flu other than through vaccination? How about spending some of the billions of advertising dollars teaching us natural ways to boost our immune systems and avoid the flu without harmful and sometimes deadly vaccinations.

Sangye
10-14-2013, 08:17 AM
By no means am I in favor of flu shots, but I would like to correct some wrong information in that post.

- Large numbers of medical professionals are not telling people to avoid flu shots. On the contrary, they're increasing the intensity of their warnings each year. Holistic health professionals do oppose most vaccines, including the flu shot

- There aren't "thousands" of medical journal articles about harmful effects of vaccine ingredients. In fact, there are almost none. There should be thousands, but the money for that isn't there.

- Not all flu vaccines contain mercury. Check the ingredients for the type you'd be getting. NVIC.org has a vaccine calculator that shows what's in each vaccine, by manufacturer

- The study claiming the flu shot increases the risk of Alzheimer's by 10 times was later shown to be false or falsified, I don't remember which.

pberggren1
10-14-2013, 09:01 AM
I was waiting for you to correct this Sangye. My friend does not think it needed correcting. Thank you.

Dirty Don
10-14-2013, 09:39 AM
The study claiming the flu shot increases the risk of Alzheimer's by 10 times was later shown to be false or falsified, I don't remember which.

Funny...sorry...hehe...carry on...

Alysia
10-15-2013, 02:15 AM
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.

me2, what is this story ?
thank you, Phil, for sharing, and Sangye for commenting.

me2
10-15-2013, 03:48 AM
me2, what is this story ?
thank you, Phil, for sharing, and Sangye for commenting.
Good stuff here as usual.
The story about Bactrim is that Dr DeRemee had a patient present with kidney infection AND Wegener's. Well, if you treat with immunosuppresants first your patient dies from kidney infection. So, he had to treat the kidney infection first and then move on to the Wegener's. Well, he treated the kidney infection and the Wegener's cleared up. Being very astute he realized that Wegener's does not just go away and became curious as to what had just happened.
There was some excitement that Bactrim could even become a first line of defense for Wegener's since it worked this one particular time.
Later studies showed it to not be effective as a first line of treatment but that there was a high correlation between staph infection and relapse. Bactrim is a good drug for staph.
This is how the practice of prophylactic use of Bactrim came into being. Using Bactrim is less dangerous than getting a staph induced Wegener's relapse.

I was most inspired that just one guy with observation of one patient could lead to such an advance in our understanding. We can all be observant.

me2
10-15-2013, 03:50 AM
Funny...sorry...hehe...carry on...
So if I don't remember getting a flu shot then the odds are ten to one that I got one? hahaha We gotta find humor where we can

Alysia
10-15-2013, 04:24 AM
thanks me2. intersting story. in my first year of WG, my wg-doc treated me only with bactrin and pred. only later when things deteriorated he added more heavy meds.