Gerson's Therapy

[Chris G]

[QUOTE=Al;54044]Again, Chris, it depends on your risk assessment. Minor smoldering can turn into a major conflagration quickly. For me, that could be fatal.

I'd like to add an "Amen" to Al's point about the smouldering aspect of Wegs. - - for your consideration and for that of others who are perhaps new to this. Sometimes things do just smoulder, but in other cases a smouldering can indeed become a major outbreak and very quickly so. (My testimony is having a clear CT scan of the chest and 36 hours later I'm riding a helicoptor to the ER with the formation of ground glass granulomas and hemorrhaging in the lungs of that very same chest.) Quickly - - and deadly under certain circumstances. That's why we pay so much attention to anything that feels the slightest bit amiss and that's one of the nasty things about this disease - - it can get you real fast if you're not careful. It can get you real fast even if you are careful; that's why we all encourage each other to keep after the docs who seem not to quite get it and why we are so alert to the smoke on today's wind which could signal tomorrow's conflagration. We just want you to be careful 'cause fighting fires is no fun. Ron [QUOTE]

Perhaps I was unclear. I was in not way suggesting that anyone should refuse or decline wg meds. I was simply saying that many of us smoulderd for a LONG time pre-diagnosis, and will smoulder again after the meds have supposedly put us into remission. There ARE times when smouldering is ok. But there are certainly times when it is not. I'm not at all new to this, and am very well versed on the necessity for meds. The most important thing is that we must work closely with our docs, be aware of our situations and risk factors, and make informed decisions about our care.

[Thakator]

Hi Chris,
No, you weren't unclear and I didn't take your statements in any negative way; I've read your postings for quite some time now and am well aware that you are well aware of what you are dealing with. I have a tendency to write for those who may be browsing this site , those who are fresh to the world of Wegeners and are seeking information regarding this strange new thing they'd never heard of before. I endeavor to stick to the posting at hand and to stay personal with the poster to whom I may be responding - - but I'm always trying to also say something that may help someone new avoid some of the pitfalls we have learned about along our way. You are right, there are times when a smouldering situation leads to nothing worse; I am right in that sometimes a smouldering situation can all of a sudden turn into something life threatening. Just wanted to make sure the new ones take the smoudering as seriously as do we. Sorry if my comments made you feel misunderstood. Ron

[Chris G]

Hi Chris,
No, you weren't unclear and I didn't take your statements in any negative way; I've read your postings for quite some time now and am well aware that you are well aware of what you are dealing with. I have a tendency to write for those who may be browsing this site , those who are fresh to the world of Wegeners and are seeking information regarding this strange new thing they'd never heard of before. I endeavor to stick to the posting at hand and to stay personal with the poster to whom I may be responding - - but I'm always trying to also say something that may help someone new avoid some of the pitfalls we have learned about along our way. You are right, there are times when a smouldering situation leads to nothing worse; I am right in that sometimes a smouldering situation can all of a sudden turn into something life threatening. Just wanted to make sure the new ones take the smoudering as seriously as do we. Sorry if my comments made you feel misunderstood. Ron

No, no......no worries. I think I was a little unclear or maybe INCOMPLETE with my first post. Here's my real uncensored opinion, you're all free to love it or hate it .........newbies should almost always follow the direction of their doctors (assuming they're well qualified) - ask questions and educate themselves as much as possible.

Those of us who have experienced the ins and outs of OUR personal disease for a good length of time, can and should take a more active role in guiding our treatment - even have some input. I personally have some particularly odd symptoms at times, and I know they are wg related, but if you check the text books, you won't find them listed. So I feel that I have early warnings that I'm familiar with. It takes time to find the patterns and figure out what is wg related and what is not. But when you do, it can be very helpful in identifying flares vs. smouldering.

[Thakator]

"It takes time to find the patterns and figure out what is wg related and what is not. But when you do, it can be very helpful in identifying flares vs. smouldering." exactly right, Chris, exactly

[delorisdoe]

I deleted my original post where I told of my unmedicated flares. I will be more carefull to leave out any experiences I have had with this disease that are not likely to help anyone and again I do apologise if i was misleading. I think I need a proof reader.

[Sangye]

I wish you would have kept it, Leigh. I think it's important to know all the possibilities that can occur with Wegs. As long as people know to get checked out when symptoms appear, it's good to know that a flare can occasionally resolve on its own accord.

[Lightwarrior]

Those of us who have experienced the ins and outs of OUR personal disease for a good length of time, can and should take a more active role in guiding our treatment - even have some input. I personally have some particularly odd symptoms at times, and I know they are wg related, but if you check the text books, you won't find them listed....Chris (female)

Chris and All,
When I was first diagnosed I was so happy to finally know what was wrong with me. One of the smart docs I work with actually cried when he gave me my dx. and he told me that most docs only read about Wegs in a text book in medical school.. He told me that I was going to have to become the expert and guide my care. Fair or not if I wanted to live, that's what I needed to do. I appreciated his honesty. Another smart doc I work with who is my nephrologist got upset with me when I did not look at my labs and it took the hospital two weeks to send to him, he told me...you are lucky you didn't die, don't ever do that again. So yes I think you have to educate yourself (thank god for Jack and Sangye) and stay on top of it.

[Chris G]

I deleted my original post where I told of my unmedicated flares. I will be more carefull to leave out any experiences I have had with this disease that are not likely to help anyone and again I do apologise if i was misleading. I think I need a proof reader.

I agree with Sangye. All of our experiences are different, and all of our experiences are important to share. Don't feel like you have to sensor yourself Leigh.

[delorisdoe]

I explained it better a few posts up from this. The one i deleted simply said "I have had 5 mini flares that were not treated and went away." LOL I guess i just added it back in but in this thread it will not be taken out of context and should not ruffle feathers or lead to others not listening to their doctors and going un medicated-I DID NOT DO THAT !!!!!.

And for the record I probably do need a proof reader. Yall should read the messages I send Jack. LOL. They are me and my free mind spewing out.

thanks guys.

[pberggren1]

Your free mind is just fine Leigh.