That makes sense to me. Many people I see that have auto immune disease and go gluten free seem to do much better.
I think maybe I will not get the flu shot and just tell my doc I did.
I hate this disease at times.
That makes sense to me. Many people I see that have auto immune disease and go gluten free seem to do much better.
I think maybe I will not get the flu shot and just tell my doc I did.
I hate this disease at times.
Phil Berggren, dx 2003
Phil, please make a decision based in your best interest, not my crazy theories... I'm just a schmo, and am not telling you what to do. I just think, and you and I are on the same page on this, that we need to take ownership of this disease, and do our own research and have those discussions with our doctors. I'm talking about my own personal experience. But I think we all need to ask our doctors some hard questions to make sure we lead long healthy lives.
It was from the experiences of people on this forum that I got the courage to speak up about my concerns, and opinions in regards to my treatment, with my healthcare professionals .
And after seeing some absolutely amazing people from this forum get taken by Wegener's it's great to have each other and our collective experience to watch our backs.
Have a heart to heart with your doctor.
Thank you Marta. You do not have crazy theories. They make good sense. You would make a great researcher, that is for sure. I will have a heart to heart about this with my doc in January when I see her again. I will also try to talk about with my lung doc next month, although I don't have a lot of time to talk with him about much at all.
I also got a lot of courage from this Forum. So many great people here. I miss Jack and Al and Lightwarrior every day.
Thanks again Marta, and keep us posted about your gluten free mission.
Phil Berggren, dx 2003
Alysia
dx 2008
Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
"You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.
I believe your doc will be glad to learn from you and it will help her with other patients as well. so better share it with her.
I know how tough it can be not to agree with your docs at times, since we are so dependent on them and prefer to just blindly trust them. but as you always say, you are your best doc.
Alysia
dx 2008
Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
"You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.
I have often wondered why most countries won't let GMO food or even crops into their country, but in USA and Canada they aren't even required to tell us that it is an ingredient in our food and it seems present in most of our food now. The rapid increase in AI diseases in past couple decades must correlate with some causal factor even though no one seems sure what it is.
Knowledge is power! Wisdom is using it to make good decisions!
I asked my infectious disease doc about the flu shot for me.
This is the e-mail and response I got from him:
Hi Phil,
Thanks for the interesting question - it isn't one that I have previously considered, but there is definitely clinical evidence to support the fact that the administration of rituximab impairs responsiveness to flu vaccine:
http://www.ncbi.nlm.nih.gov/pubmed/23064976
With that said, there's *no* evidence that influenza vaccine should cause any sorts of adverse reactions or flares, so I would still say that it is very reasonable for you to get especially given your impaired / suboptimal lung function, even if the responsiveness of the vaccine may perhaps be decreased in your circumstances. It is hard for me to comment on the side effects that you and your friends may have experience with vaccines, but all that I can say is that the science would not support an association between adverse events and administration of vaccine, so coincidence is probably the best explanation that I can come up with.
Hope that helps - take care, stay well.
Best,
Alex.
On Sat, Nov 30, 2013 at 5:02 PM, phil berggren <[email protected]> wrote:
Hi Alex:
I hope this finds you well.
I want to ask you about the Flu shot and if it would benefit me or not. I get Rituximab infusions every 6 months now and from what I understand that wipes out the B-cells. And the B-cells are like the immune memory. So if I go the flu shot now and then in January when I get the Rituximab that memory would be wiped clean. Am I understanding this correctly? I have spoken to many Wegener's and other Vasculitis patients about this and they have all said the same thing.
I have never been a fan of vaccines in general. I know many serve a purpose but there are some that do not sit will with me. There have been a few fellow Wegener's patients that I know have had flares and onset caused by the flu shot. So that is on my mind as well. Also I had the flu shot in 2011 shortly before my cochlear implant surgery along with Menactra and Pneumococcal 23. About 3 days after I received these vaccines I developed severe dry mouth and have had it ever since. Tagboto seems to think that one or a combo of those vaccines caused the dry mouth. But that is all in the past but I just wanted you to see part of why I fear vaccines.
Anyway, When I saw Bonnie this week she asked me if I had got the flu shot yet for this year. I said: No, I don't like them. So then she gave me the lecture about the flu and how I am very compromised, etc. She caught me off guard and I didn't have a good response for that.
I just want to know if we are right about the Rituximab wiping the immune memory clean.
Thanks again,
Phil Berggren
Phil Berggren, dx 2003
I knew I would get a response like this from him because vaccines is a major part of his work. I'm sure that I will get the same response from Bonnie and Dave, my lung doc, as well.
Phil Berggren, dx 2003
I'm a fan of vaccines. If they come out with one for hang nails, I'll get it. I've had all the important vaccines and no ill effects. Simply no problems at all. Am I better protected than anyone else? I have no idea, but certainly not worse off....
Wegener's (GPA )- Apr10, Granulomatous Hypophysitis - Apr10, Diaphragmatic Paralysis - Feb16, Bradycardia - Dec16, Fibromyalgia - 2017, Hypoparathyroidism - 2017. (my story)
Forum Member Map -- world map for you to put a stickpin of where you are located....
I know what you are saying vdub. It is just that I have seen so many people that seem to have had ill effects from vaccines. Marta and I are just two of many. And I doubt anyone will be able to convince either of us that what happened to us was just a coincidence.
Phil Berggren, dx 2003
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