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Thread: 7 years ago today I became a member of this elite club

  1. #11
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    Default Re: 7 years ago today I became a member of this elite club

    Marta: I was just talking to Alysia about how vaccines initiated your Wegener's. I'm trying to find everyone I can with the same story as yours and mine. Vaccines also caused my WG. Do you know anyone else? Have you ever done more background on that? Thank You

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    Default Re: 7 years ago today I became a member of this elite club

    Vaccines did NOT cause our wegeners. Viruses are know to potentially set off the cascade of events to onset and relapse of autoimmune disease. I️ am certain this is the case for the onset of my wegeners and at least 1 relapse. Vaccines protect us from viruses. Please get your flu shot. I️ also recommend a pneumovac. Influenza and pneumonia can be a severe lung infection especially for us wegeners patients with lung problems.


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    Default Re: 7 years ago today I became a member of this elite club

    Quote Originally Posted by crowneagle View Post
    Marta: I was just talking to Alysia about how vaccines initiated your Wegener's. I'm trying to find everyone I can with the same story as yours and mine. Vaccines also caused my WG. Do you know anyone else? Have you ever done more background on that? Thank You
    Yes, I have done a lot of research in this matter. Too much for a mere mortal, ha ha. My doctor agrees with me too. There are papers supporting this in medical journals, there is a whole conference in Europe, I think it might be taking place right now, and it's rheumatologists, immunologists, and researchers, who are linking autoimmune disease with vaccines. The insert of the GSK H1N1 vaccine that I was immunized with, on page 7, in very small print, actually states the word Vasculitis as a potential rare side effect. I believe they have since removed it.

    Wegener's Granulomatosis an auto immune disease, and two things are known about autoimmune disease with certainty. 1. There is a genetic predisposition. 2. There is always a trigger.
    That trigger could be viruses, bacterial infection, environmental agents, and yes vaccines. The way a vaccine works is that it induces an immune response to a neutral virus (and in some cases live, and with those vaccines you should never ever get while on treatment for your WG because getting chicken pox while on immune suppressants can actually kill you) so that if you're ever exposed, your immune system remembers that virus and your B-cells can launch an attack against said virus much quicker and prevent it from taking over and potentially killing you. In people with genetic predisposition to autoimmune disease (a disease where your immune system attacks healthy tissues, organs, and/or systems - in our case blood vessels of a certain diameter) a vaccine is quite potentially that trigger that the body needs. It might not be in everyone, and yes, some have their trigger a virus, or mould, or a bacterial infection, but some did indeed have a vaccine trigger their disease.

    I know a few other people personally who feel the same way. I Canada the reporting of vaccine side effects is designed to be super cumbersome and in fact is almost as if they don't want reporting of vaccine side effects (unlike any other drug where you can report negative side effects online) PM me and I'll send you some links to stuff I've researched before.

    I would absolutely love to talk to you about this, but I'd like to do it in private, as I get sucked into yucky conversations when people who don't agree jump into the discussion. I have no problem discussing any view as long as it comes from a factual basis and is not initiated to just provoke.
    Last edited by marta; 11-23-2017 at 09:12 AM.

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    Default Re: 7 years ago today I became a member of this elite club

    Quote Originally Posted by meganjean26 View Post
    Vaccines did NOT cause our wegeners. Viruses are know to potentially set off the cascade of events to onset and relapse of autoimmune disease. I️ am certain this is the case for the onset of my wegeners and at least 1 relapse. Vaccines protect us from viruses. Please get your flu shot. I️ also recommend a pneumovac. Influenza and pneumonia can be a severe lung infection especially for us wegeners patients with lung problems.


    Sent from my iPhone using Tapatalk
    It drives me NUTS when someone who doesn't know my story, or me, or the science, tells me that I didn't get my Wegener's from the vaccine.

    Truly drives me nuts that people can be so stuck in their positional bubble that they choose to negate someone else's experience so they can remain cozy in the comforts of their belief system.

    Something good that has come out of this disease for me is that I've learned so so much. I've read more medical journal papers than I ever did in University. I've been proactive with the healing and knowing as much as I can, including what caused it so that I don't repeat any mistakes, and hopefully help someone else from falling in the same trap. I can sit and talk with doctors as equals on this particular subject now, and it is empowering. I feel stronger now than I ever have before WG, not physically, but mentally, as I would never have questioned a medical specialist before, and together end up coming up with a much better way to find the answer to a medical question were seeking.

    It all comes from having an open mind and being curious, and respectful instead of telling someone their experience did NOT happen because it doesn't jive with my world view.

    P.S. I'm protected from PCP pneumonia by using the antibiotic Dapsone (as I'm allergic to Bactrim, the other antibiotic used to protect immune suppressed patients from PCP pneumonia.)

    Funny Side Note: Our B-cells are the ones that keep the memory of the diseases and vaccines we have had. When you have a Rituxin treatment (A.K.A. B-cell ablation) you have lost all of the vaccines that you've had since the memory lives in the B-cells that you're flushing down the toilet the few days after treatment. Funny, right?

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    Default Re: 7 years ago today I became a member of this elite club

    This is not the usual me in the above post, but it's a topic that really hits a nerve. I'm sorry but I have to challenge the idea that because you don't agree with me somehow gives you the right to negate what happened to me. I challenge this because in my view, this is the one place (this forum) we should be able to come and express our experience in a safe environment where others don't get to tell you it didn't happen to you that way because it didn't happen to them that way. A type of belittling quagmire often experienced in the outside world when it comes to this disease.

    I don't want to come off sounding like a jerk, because I started to talk on this thread about the great things that have come out of this disease, but herein lies one of the gross things that have come from this disease. After spending years researching and connecting dots, I still get a knee jerk reaction to people who 'believe' in vaccines so vehemently, as if it was some sort of religious entity, jumping on me and trying to take away my history because it challenges their belief system. I've stopped talking about vaccines for this exact reason.
    Last edited by marta; 11-23-2017 at 10:27 AM.

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    Default Re: 7 years ago today I became a member of this elite club

    Quote Originally Posted by marta View Post
    This is not the usual me in the above post, but it's a topic that really hits a nerve. I'm sorry but I have to challenge the idea that because you don't agree with me somehow gives you the right to negate what happened to me. I challenge this because in my view, this is the one place (this forum) we should be able to come and express our experience in a safe environment where others don't get to tell you it didn't happen to you that way because it didn't happen to them that way. A type of belittling quagmire often experienced in the outside world when it comes to this disease.

    I don't want to come off sounding like a jerk, because I started to talk on this thread about the great things that have come out of this disease, but herein lies one of the gross things that have come from this disease. After spending years researching and connecting dots, I still get a knee jerk reaction to people who 'believe' in vaccines so vehemently, as if it was some sort of religious entity, jumping on me and trying to take away my history because it challenges their belief system. I've stopped talking about vaccines for this exact reason.
    Marta your not a Jerk... I can't comment on it as I know so little, but I do know it's very possible and try not to be too sensitive about the unenlightened minds... it has got me thinking about it and will look into my history a bit more... thanks and don't stop talking about it.. x

    Sent from my SM-G930F using Tapatalk
    Ben


    Diagnosed in 2013


    Never, never, never give up! (Winston Churchill)

    What screws us up the most in life is the picture in our head of how it is supposed to be.... (Not found out yet)

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    Default Re: 7 years ago today I became a member of this elite club

    I had no vaccines in the last 2 years, and I contracted GPA in July/August.
    I don't like vaccines and I do take them, but I never take the flu shots.

    Having said that, there is no way to predict if a vaccine could or could not trigger GPA on someone.

    If someone were to contract GPA from a vaccine, would that be the fault of the vaccine? Doctors? Labs?


    Ed.

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    Default Re: 7 years ago today I became a member of this elite club

    Thanks Ben. I don't think I'm a jerk either, but I do know that this topic really hits my hot button, and with each passing year, I have less and less patience for naysayers who have nothing but opinion to base their comments on. I'm not trying to convince anyone about anything. I'm reporting my story and the research that I've done based on my story, and the evidence I have found. Everyone is entitled to make their own decisions, I'm just hoping to give a perspective to consider that most doctors won't talk to you about. There is a thing called NNT (number needed to treat) - in how many people getting treated with a medication for a year does it take to help one single person... it's part of the risk/benefit assessment we all need to be part of for each medication we accept to put into our bodies and it needs to be weighed against possible side effects rate. It's not easy being an educated patient, but is sure is empowering.

    Ed, I'm sorry you've got the WG bug. I don't like vaccines now either. Especially the 'make-them-quickly-and-create-a-fake-need-for-them-vaccines' (like seasonal flu shots, HPV vaccines for non sexually active children, etc.) with minimal to non existent long term side effects data. I know they pulled us out of the dark ages, and I don't have a problem with the old true blues. The ones we have had for generations that have endless long term data.

    There is no way to predict if a vaccine will be a trigger. The only thing that I operate under is that now that I know there is a predisposition to autoimmune disease in my family (mom, dad, and only sister all have autoimmune diseases) I know that the only other factor I need is a trigger. Personally now I know that vaccines trigger an overboard immune response in my body that doesn't know when to quit, and then decides to stick around in the form of Vasculitis or more precisely Wegener's. So I avoid it all together. I know also that my daughter is predisposed (being my daughter) so I avoid the fly by night vaccines that society is guilted into using. She's had all the basics, but nothing superfluous.

    I think that's the thing I'm trying to convey to people. If you happen to know that autoimmune predisposition is a possibility (like blood line relatives dealing with any of the 140+ autoimmune diseases or disorders) then make more informed decisions than the general population (however it must be noted, that 1 in 5 people have autoimmune diseases or disorders, so statistically that means we should all make informed decisions on how we play around with our immune response.)

    The last question. Vaccine makers have padded themselves quite nicely against litigation. There is no fault with vaccines. There are some countries that have financial pots to help victims of vaccines, however in Canada, where I'm from, this is a non entity. Vaccines are exempt from litigation, or wrongful doing. The reporting adverse side effects process in Canada is clearly designed to prevent reporting of vaccine side effects. Generally speaking, if you're injured from a vaccine, tough luck. Nobody takes fault.

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    Default Re: 7 years ago today I became a member of this elite club

    Quote Originally Posted by delorisdoe View Post
    'Tis disease has done nothing positive for me by any stretch of the imagination. When someone asks me what age I would return to if I could it would be 25 because that was around the time I was healthy. I hate wegeners and all it brings.
    I remember from our previous conversations, years ago, that we were even then diametrically opposed in how we perceive this experience. So I'm not surprised to see this comment in reply to mine.

    Reality is 100% subjective. We choose how we perceive an experience.
    We choose what aspects to focus on, and what kind of 'judgement' we impose on them.
    It all comes down to where in the levels of consciousness we tend to bobble, and one is not better than another, it's just what it is.

    Pain sucks. But it's part of the human condition. Adversity and challenges suck. But they're part of the human condition. These moments are given to us as gifts, in that we can chose to wallow in self pity, or we can choose to rise above it. It's all a choice. And every choice creates new karma... you either add to your debt, or you pay some off.... your choice.

    You can't change the past, but you can change the future.

    I have to say that I wholeheartedly and with all sincerity hope that you find peace and acceptance in this process and that the good always outnumbers/outweighs the bad.
    Last edited by marta; 11-28-2017 at 03:45 PM.

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