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Type: Posts; User: crowneagle

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  1. Re: Searching for anybody that has connected their WG to vaccines.

    I'd like all of us to get together, so that we can compare notes. I also had a very bad reaction to the 2011/2012 flu vaccine.
  2. Re: Searching for anybody that has connected their WG to vaccines.

    I'm not really looking for advice from people who have had no issues with vaccines. It'll just gum up the thread. Most of you, obviously, have had no problems. This isn't an issue of live versus dead...
  3. Searching for anybody that has connected their WG to vaccines.

    I realize that it is recommended by our doctors that we get the flu vaccine. There are however a certain subset of weggies that have had very bad things happen to them when taking vaccines. I know...
  4. 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...
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    Thanks Marta. Sorry it took so long to get back...

    Thanks Marta. Sorry it took so long to get back to you. The plasma exchange is out for me for the time being because I was told they wouldn't do it, unless I was in desperate shape. I've had very bad...
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    I'm not sure if it's still being used or not....

    I'm not sure if it's still being used or not. I've read that it's been withdrawn but even that info is old. Anyways,it doesn't appear to be available in the USA. I've had some good effects from...
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    Unfortunately, mtx isn't recommended for weggies...

    Unfortunately, mtx isn't recommended for weggies with cns issues as the presenting feature. At least, that's how I remember it.
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    Thanks Anne. Miss you. I am seriously thinking...

    Thanks Anne. Miss you. I am seriously thinking about another round of Cytoxan. I have to call my doctor today after she left me a message yesterday. First, I'm fully exploring what fisetin can do for...
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    Desperately seeking med ideas.

    Alysia Weggie suggested that I post my questions here. So, here is my situation. I've got an untenable situation where every drug they try me on progresses my disease, rather than arrest it. My...
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    The Worcester area would be great because it's in...

    The Worcester area would be great because it's in the middle of New England and ..........I live there. LOL!
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    Meetup New England

    I would be interested but I would need to know when and if it would be possible to do it outside the city.
  12. I'm on Cytoxan now and I just told my doctor...

    I'm on
    Cytoxan now and I just told my doctor I'm taking a drug holiday after the infusions are done. Just so I can deal with my teeth. I wouldn't trust what the doctors say even though my general...
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    Alysia, mine are the same. High neutrophils low...

    Alysia, mine are the same. High neutrophils low lymphocytes. What's your blood count? I believe that is more important. It would be worse if your neutrophils crashed. That would be neutropenia, which...
  14. Thread: Anion gap?

    by crowneagle
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    Did your anion gap come back low before a major attack? I'm investigating this myself

    Did your anion gap come back low before or at a major attack? I'm investigating this myself. contact me at [email protected]
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    I heard they have to have a higher GPA than human...

    I heard they have to have a higher GPA than human doctor to get into veterinary school. Tufts Veterinary school is close by to me.
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    I am new to the forum and I've had the...

    I am new to the forum and I've had the opportunity to get to know Alysia. I appreciate this love story between two special people. Thank you for sharing in your experience. I wish I could have known...
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    Weggies Lounge

    Weggies Lounge has been born. Not including "the Forum', I think we are well on our way to building the largest research library on the web. You can get diet tips as well as meditational videos. We...
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    New found respect for Andrew

    While I've been hobnobbing the world of Wegeners, in two days I started a new Facebook Wegeners group. I soon found out that the old and stodgy can be just as good than the new and glitzy Facebook....
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    Then. we are kindred spirits then. I feel the...

    Then. we are kindred spirits then. I feel the exact same way.
  20. Thread: Facebook

    by crowneagle
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    Mishb I'm no facebook pro. How do I find your...

    Mishb I'm no facebook pro. How do I find your friend request?
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    Video Presentations for GPA with URL's

    Just a couple of video's that I happened upon. Many of you may have seen these or maybe not. Very interesting! If anybody would like to add further videos to this, then we can share in the search....
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    Video Presentations for GPA with URL's

    Just a couple of video's that I happened upon. Many of you may have seen these or maybe not. Very interesting! If anybody would like to add further videos to this, then we can share in the search....
  23. Thread: Facebook

    by crowneagle
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    I sent you a friend request.

    I sent you a friend request.
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    A True Story

    A true story
    Was down at the Price Chopper in Webster, Ma getting my impacted bowel toolkit, Clear soups, pedialite, miralax, Protein shakes(thanks Nancy Keyesand Stacy) and apple juice. I'm in line...
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    I agree with you. That's why we need to do the...

    I agree with you. That's why we need to do the extra work.
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