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Machinehead
Guest
See ya....
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Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.
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Kossy
Guest
Now please understand where I am coming from. I admire where you're coming from on this. I have put a lot of time and effort into resarching this as well.
First off, Dr. Shafran seems to me to an "antibiotic pill pusher" of this RMAT. The toughts being "a leader in the use of antibiotic treatments" on his website. It just seems odd to me that if this was the wonder drug then way doesn't the rest of the GI world embrace it.?.?
Secondly, This whole cow thing... I have mixed feelings about it. Sure the cows suffer something similar to us. But the transfer from them to us. It just doesn't compute into my head.
Thirdly, if we did get Crohn's from Crohn's wouldn't a lot more people get it? I believe they say it's a mutated jean that doesn't wort it off. Why couldn't stem cell the shit out of one of the good jeans and inject us with it??
Something elsely....If you all of this is true why haven't I read any of this in the New England Journal of Medical, or on th CCFA.org? Some sutff doesn't make sense to me.
I've heard "oh, it's a conspiricy that the FDA is covering it up to say the dairiy farmers." I almost dead when I heard that.
All I am saying is thanks for all your help and I am not at all trying to discourage you at all or tell you are all wrong. That is not my point. I'm just expressing my feelings about this topic.
First off, Dr. Shafran seems to me to an "antibiotic pill pusher" of this RMAT. The toughts being "a leader in the use of antibiotic treatments" on his website. It just seems odd to me that if this was the wonder drug then way doesn't the rest of the GI world embrace it.?.?
Secondly, This whole cow thing... I have mixed feelings about it. Sure the cows suffer something similar to us. But the transfer from them to us. It just doesn't compute into my head.
Thirdly, if we did get Crohn's from Crohn's wouldn't a lot more people get it? I believe they say it's a mutated jean that doesn't wort it off. Why couldn't stem cell the shit out of one of the good jeans and inject us with it??
Something elsely....If you all of this is true why haven't I read any of this in the New England Journal of Medical, or on th CCFA.org? Some sutff doesn't make sense to me.
I've heard "oh, it's a conspiricy that the FDA is covering it up to say the dairiy farmers." I almost dead when I heard that.
All I am saying is thanks for all your help and I am not at all trying to discourage you at all or tell you are all wrong. That is not my point. I'm just expressing my feelings about this topic.
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Kossy
Guest
I understand where you're coming from and what you are saying. But, the thing is there are sooo many many many different trials on everything. A bunch of conclusions have been drawn to what causes it. Way to many variables thrown into the pot of our live stlyes to claim what causes it.
Like for instance, something a bit off topic. Most of the cases of Crohn's if not all are from Industrealized nations. You never hear anything about anyone having this in a 3rd world counrty. It could be because they don't have medical treatment to diagnose it. Or it's just not there.
I know there is a boat load of us Crohnies that live in a large industrized areas of the country. Oh and another thing. A lot of the milk people buy that the stores are actaully milk from goats, not cows.
Oh and Don't believe everything you read about the Maker's diet. The author of the book as already been exposed as a frued.
Like for instance, something a bit off topic. Most of the cases of Crohn's if not all are from Industrealized nations. You never hear anything about anyone having this in a 3rd world counrty. It could be because they don't have medical treatment to diagnose it. Or it's just not there.
I know there is a boat load of us Crohnies that live in a large industrized areas of the country. Oh and another thing. A lot of the milk people buy that the stores are actaully milk from goats, not cows.
Oh and Don't believe everything you read about the Maker's diet. The author of the book as already been exposed as a frued.
D
Donna
Guest
I agree with Kossy on this...I commend you on your efforts...but....
My own research from searching books/web and several doctor's opinions, has come up with this. What we have is an auto-immune disease. There is a chemical (I think it is a chemical or something that begins with a T) that tells our bodies to attack even good bacteria. It makes our bodies think we are having an intestinal flu of varying degrees. It also has the same make up as other auto-immune diseases such as Lupus and MS. And it is a relatively new disease (or should I say, newly named?) Of course there are going to be more people diagnosed. The technology to find this out is better than it was, and the technology is rapidly spreading world-wide, thus making it seem like more people have it now than many years ago.
I personally would end up blowing the idea on smoking and milk drinking. Since this disease is different for just about everyone, what works for one wont work for another. I don't smoke, haven't for 20 years. I also drink milk, some weeks by the gallons. Always have. I had symptoms when I was 20 but they disappeared until I turned 32. In all that time, I drank milk every day with no problems. I have asked my GI's about the PARA-TB germ and they said not everyone has it, so if that is the case, then what causes those people to have Crohn's? Also, people I know that ceased to drink milk for years, still have Crohn's and Crohn's flareups.
Also, your first link has a disclaimer right up front before you get to read the information. And he only tested the cocktail with 35 people. Hardly a vast majority when you look at the overall coverage of Crohn's patients. Also, even tho the FDA doesn't approve it, if it were something that worked, there would be more on the idea, possibly overseas. I don't know if there is..but I do know there are docs here that will give prescriptions for the things they have overseas that aren't approved for this country. I think that I would have heard more positive responses in that cocktail with all the forums I have posted in.
There is a possibility that MAP does induce Crohn's, but what about in people who have had allergic reactions to dairy products since their infancy, do not and have never had milk products, yet have Crohn's? Maybe tho, it doesn't "cause" Crohn's but wakes up what you are already born with?
I have tried probiotics, with no help. Maybe you need a certain combination for it to work. My GI's don't recommend it to most of their patients because it sometimes puts back what your body fought off in the first place and only makes your body fight harder. Also, I read in another one of your posts that this disease is one where they like to remove your intestines over time. Yes, they do, but usually only as a last resort. I have been begging for surgery with no luck. I have been sick for 4 years, and every time I get to the point of being so aggravated and asking for the surgery, they try a new med, and I am back to recovery. Unlike Colitis, if you remove a part of your intestines, odds aren't in your favor for complete recovery. With Crohn's, you almost always get another flare right where the surgery occured. I also know people that are taking "worms" (I can't think of the name of the worm at the moment)...and even that isn't really working out.
I think it is commendable that you are researching in depth to everything you can get your hands on. I don't want to discourage you in any way because my motto is Knowledge is the best weapon in all things. I can't speak for everyone else, but when I was first diagnosed, I was in denial. I didn't want to believe I was now sick with a chronic illness that has no cure. I researched the library, the web, other people with the disease. And eventually came to the realization that there is so much information out there that one can easily become overwhelmed and believe in even the smallest ray of hope. I think you should continue your mission, but please don't do as I did and fall hard when I found one thing that would work, and then eventually it stopped working altogether. I myself look forward to what you find...maybe there is something that is out there that they haven't found yet...and maybe your reason for having this disease is to find that cure. And when you do, I will be the first person to say I was wrong. I just don't like to see another person get hyped by the hype only to be let down. Just be careful in what you read, and rely on your body to tell you what works and doesn't work instead. And again, I don't want to sound disheartening, but I also don't want to see someone get let down as is so usual with this disease.
Good luck, and pleaseeeeee....keep posting your findings. I am sure I will be taking them to my own docs in the near future!!
Donna
My own research from searching books/web and several doctor's opinions, has come up with this. What we have is an auto-immune disease. There is a chemical (I think it is a chemical or something that begins with a T) that tells our bodies to attack even good bacteria. It makes our bodies think we are having an intestinal flu of varying degrees. It also has the same make up as other auto-immune diseases such as Lupus and MS. And it is a relatively new disease (or should I say, newly named?) Of course there are going to be more people diagnosed. The technology to find this out is better than it was, and the technology is rapidly spreading world-wide, thus making it seem like more people have it now than many years ago.
I personally would end up blowing the idea on smoking and milk drinking. Since this disease is different for just about everyone, what works for one wont work for another. I don't smoke, haven't for 20 years. I also drink milk, some weeks by the gallons. Always have. I had symptoms when I was 20 but they disappeared until I turned 32. In all that time, I drank milk every day with no problems. I have asked my GI's about the PARA-TB germ and they said not everyone has it, so if that is the case, then what causes those people to have Crohn's? Also, people I know that ceased to drink milk for years, still have Crohn's and Crohn's flareups.
Also, your first link has a disclaimer right up front before you get to read the information. And he only tested the cocktail with 35 people. Hardly a vast majority when you look at the overall coverage of Crohn's patients. Also, even tho the FDA doesn't approve it, if it were something that worked, there would be more on the idea, possibly overseas. I don't know if there is..but I do know there are docs here that will give prescriptions for the things they have overseas that aren't approved for this country. I think that I would have heard more positive responses in that cocktail with all the forums I have posted in.
There is a possibility that MAP does induce Crohn's, but what about in people who have had allergic reactions to dairy products since their infancy, do not and have never had milk products, yet have Crohn's? Maybe tho, it doesn't "cause" Crohn's but wakes up what you are already born with?
I have tried probiotics, with no help. Maybe you need a certain combination for it to work. My GI's don't recommend it to most of their patients because it sometimes puts back what your body fought off in the first place and only makes your body fight harder. Also, I read in another one of your posts that this disease is one where they like to remove your intestines over time. Yes, they do, but usually only as a last resort. I have been begging for surgery with no luck. I have been sick for 4 years, and every time I get to the point of being so aggravated and asking for the surgery, they try a new med, and I am back to recovery. Unlike Colitis, if you remove a part of your intestines, odds aren't in your favor for complete recovery. With Crohn's, you almost always get another flare right where the surgery occured. I also know people that are taking "worms" (I can't think of the name of the worm at the moment)...and even that isn't really working out.
I think it is commendable that you are researching in depth to everything you can get your hands on. I don't want to discourage you in any way because my motto is Knowledge is the best weapon in all things. I can't speak for everyone else, but when I was first diagnosed, I was in denial. I didn't want to believe I was now sick with a chronic illness that has no cure. I researched the library, the web, other people with the disease. And eventually came to the realization that there is so much information out there that one can easily become overwhelmed and believe in even the smallest ray of hope. I think you should continue your mission, but please don't do as I did and fall hard when I found one thing that would work, and then eventually it stopped working altogether. I myself look forward to what you find...maybe there is something that is out there that they haven't found yet...and maybe your reason for having this disease is to find that cure. And when you do, I will be the first person to say I was wrong. I just don't like to see another person get hyped by the hype only to be let down. Just be careful in what you read, and rely on your body to tell you what works and doesn't work instead. And again, I don't want to sound disheartening, but I also don't want to see someone get let down as is so usual with this disease.
Good luck, and pleaseeeeee....keep posting your findings. I am sure I will be taking them to my own docs in the near future!!
Donna
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Kossy
Guest
It sounds like you copy and pasted that. Crohn's has been around since about the 40's or earlier. Don't qoute me on the exact date. But when I work on a farm back in the 90's we were feeding the cattle grass and hay.Machinehead said:
I don't see goats.
I never said they weren't real doctors. All I am saying it's very hard to pin point a cause of a disease. They might think one thing causes it but it would have to cause ALL of the cases. But just like in the Theme Song to Different Strokes. "Now, the world don't move to the beat of just one drum, What might be right for you, may not be right for some...."
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Kate
Guest
I wont go into it again but im with donna and kossy on this
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Kossy
Guest
Again let me just say I am not trying to be a prick... What I've read is that you were diagnosed a few days ago.. A lot of us have seen all and heard a bunch of whooie about stuff that has to do about crohns. Enough so that a lot of us take stuff with a grain of salt when we hear about things.
Honestly I thought you were Dr. Shafran trying to pimp your drugs.
Honestly I thought you were Dr. Shafran trying to pimp your drugs.
D
Donna
Guest
I am sorry if I came across negatively. But like Kossy said, we have all heard so many new theories and then found out that they were a bunch of nothing, that we do tend to take things with a grain of salt. It isn't that I am trying to be negative...its just that we have all been there and know what is going to happen. HOPEFULLY in this case, we can be wrong. But until there is more proof, substantial proof, I will continue drinking my milk. lol.
And I do look forward to your postings about what you come up with. Like I said, you may find something they haven't yet.
Donna
And I do look forward to your postings about what you come up with. Like I said, you may find something they haven't yet.
Donna
K
Kossy
Guest
I wouldn't called it negitive debate. Maybe constructive critisim. I'm just starting to feel that you have blinders on and are so focused on one area of possiblities that you're negleting the big picture.
Their is only so much a person can learn from reading things on the internet. If their was ever a cure or anything it would have to be scientifily done in a lab with beckers and test tubs and schematics. Now I am not questioning your good problem sovling skills. I just feeling that your a tad bit narrow minded to be thinking out of the box.
Their is only so much a person can learn from reading things on the internet. If their was ever a cure or anything it would have to be scientifily done in a lab with beckers and test tubs and schematics. Now I am not questioning your good problem sovling skills. I just feeling that your a tad bit narrow minded to be thinking out of the box.
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Donna
Guest
How many patients have the paratb germ and Don't have crohn's?
I will agree that there is alot of work being done, but 87% is not 100%. In order for something to be the reason people have a disease I would think it would have to be 100% of Crohn's sufferers have this particular germ residing in their gut. I think maybe this germ could cause effects to go along with the disease, but I don't think it is the cause. Again, I think it is genetics in one form or another (and in genetics, they don't have to have Crohn's or Colitis, they could have another form of auto-immune disease). There are going to be alot of foods out there that will affect you somehow and milk just happens to be one of them. And like I said, maybe it is because it aggravates Crohn's disease in some way, just like eating too much fiber does.
It also could be like when they found out that Ecoli bacteria causes diarhea. I am sure they tested those with the diarhea, and sure enough they had the bacteria. BUT, when they started doing more in depth research, guess what? We all have the bacteria in our systems! Until they found out that there was another Ecoli that usually caused diarhea, and that not everyone with that particular ecoli had symptoms, they couldn't say for sure that it "caused" the problem.
Interesting.
I will agree that there is alot of work being done, but 87% is not 100%. In order for something to be the reason people have a disease I would think it would have to be 100% of Crohn's sufferers have this particular germ residing in their gut. I think maybe this germ could cause effects to go along with the disease, but I don't think it is the cause. Again, I think it is genetics in one form or another (and in genetics, they don't have to have Crohn's or Colitis, they could have another form of auto-immune disease). There are going to be alot of foods out there that will affect you somehow and milk just happens to be one of them. And like I said, maybe it is because it aggravates Crohn's disease in some way, just like eating too much fiber does.
It also could be like when they found out that Ecoli bacteria causes diarhea. I am sure they tested those with the diarhea, and sure enough they had the bacteria. BUT, when they started doing more in depth research, guess what? We all have the bacteria in our systems! Until they found out that there was another Ecoli that usually caused diarhea, and that not everyone with that particular ecoli had symptoms, they couldn't say for sure that it "caused" the problem.
Interesting.
K
Kossy
Guest
I agree with Donna. For something to be conclusive I would think it would have to be 100%
I read the whole report. For the most part it was pretty impressive but their were a couple things I found a tad bit odd. Mainly the specimans used where those that were furnished but Dr.Shafran, one of the Doctors conducting the study. For that fact alone the FDA would throw this research out the window. The samples should have come from a "blind" scource.
But all in all the page was interesting but pretty inconclusive in my mind.
I read the whole report. For the most part it was pretty impressive but their were a couple things I found a tad bit odd. Mainly the specimans used where those that were furnished but Dr.Shafran, one of the Doctors conducting the study. For that fact alone the FDA would throw this research out the window. The samples should have come from a "blind" scource.
But all in all the page was interesting but pretty inconclusive in my mind.
D
Donna
Guest
Ok I read the text from your link. I think also that the tested samples should come from blind sources from all over the globe, not just Florida. Also, is there any other groups studying this and if so, what are their findings? Also, for every positive there is a negative, is there a group that has done the same testing and found different results?
Just adding feul to your fire...lol.
Donna
Just adding feul to your fire...lol.
Donna
Id have to agree with machinehead on this one. I mean what other research have u guys seen, or what other studies have you guys seen to prove something different. I mean this is the only research/studies that I have seen that is actually getting somewhere to prove where crohns comes from and until anyone else can prove different (as in crohns research or studies) saying that crohns is genetic or whatever I'll choose to believe this one for now. I mean the reseach is there. I see everyone disagreeing but not backing it up with other hard evidence that it could be something else. Im not trying to butt heads with anyone but Id like to see other studies proving different!!
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Donna
Guest
Other Research
First, I have been studying everything I can find since being diagnosed. MOST of the information is being reported that Crohn's is a genetic disorder. It also has to do with the immune system. At one point the general concesous was that it was a hyper immune system, but now they are thinking it may be the opposite. There are also studies of mycobabacterium causing the disease. Here is 1 site that I found a ton of info....
http://www.medicinenet.com/crohns_disease/article.htm
In order to find other research studies, all one has to do is google search Crohn's disease...you will come up with millions. From everything from milk and dairy products to stress. There is just too much information out there to be able to disect any one thing. They all sound legitimate. For instance, here are a few doctors/professors making their own studies...
Dr. John Thompson, director of pediatric gastroenterology and nutrition at the University Maimi's Miller School of Medicine. http://www.medicinenet.com/script/main/art.asp?articlekey=60001
Dr. Anthony Segal, professor of medicine at the University College of London (he has come up with the theory and testing to prove that we may have the "failure of the acute inflammatory response")http://www.medicinenet.com/script/main/art.asp?articlekey=60001 (same as Dr. Thompson)
Dr. Joshua Korzenik, co-director of Crohn's and Colitis Center at the Mass. General Hospital.
These are just 3 that are out there. Google their names and see what they come up with.
Yes, there is becoming more and more proof that there might be a bacteria involved in causing Crohn's, but they haven't narrowed it down to just ParaTB. And, it still is not considered the 100% cause of Crohn's...because not all patients have these certain bacteria.
And that is why I am balking at this theory of bacteria. Not everyone has it. Not everyone is infected. They have already proven that it is genetically related. It is a problem with our immune systems. To me, they just haven't proven why our immune systems attack our bodies like they do whether it is a bacteria or not.
I think also, there is too much information out there that a person can believe in one thing while it might not be the best thing to believe in. When I was first diagnosed I looked for ANY information that would lead to a cure. I have young children, I NEEDED a cure. I would (and still do) read everything I can get my hands on. I have heard theories that it is psychosematic, an immune system malfunction, hereditary, a mutant gene, certain foods, stress, location of the patient, water, fruit juice and a bacteria in that. The list goes on. Until I have seen concrete proof of anything, I can't believe in any one thing. And again, this is just my opinion.
All I am saying is there is way too much information to lock yourself onto one idea. And there is too much crap (pun intended) out there that is nothing but a bunch of bull to believe too. Until my GI's tell me otherwise, I will stick with the genetics and autoimmune theories. And because there are so many theories out there, everyone will believe in what they want to believe in. And again, if this is the reason behind Crohn's, and it is the cure, I will be the first to say I was wrong and give a huge public apology.
Donna
First, I have been studying everything I can find since being diagnosed. MOST of the information is being reported that Crohn's is a genetic disorder. It also has to do with the immune system. At one point the general concesous was that it was a hyper immune system, but now they are thinking it may be the opposite. There are also studies of mycobabacterium causing the disease. Here is 1 site that I found a ton of info....
http://www.medicinenet.com/crohns_disease/article.htm
In order to find other research studies, all one has to do is google search Crohn's disease...you will come up with millions. From everything from milk and dairy products to stress. There is just too much information out there to be able to disect any one thing. They all sound legitimate. For instance, here are a few doctors/professors making their own studies...
Dr. John Thompson, director of pediatric gastroenterology and nutrition at the University Maimi's Miller School of Medicine. http://www.medicinenet.com/script/main/art.asp?articlekey=60001
Dr. Anthony Segal, professor of medicine at the University College of London (he has come up with the theory and testing to prove that we may have the "failure of the acute inflammatory response")http://www.medicinenet.com/script/main/art.asp?articlekey=60001 (same as Dr. Thompson)
Dr. Joshua Korzenik, co-director of Crohn's and Colitis Center at the Mass. General Hospital.
These are just 3 that are out there. Google their names and see what they come up with.
Yes, there is becoming more and more proof that there might be a bacteria involved in causing Crohn's, but they haven't narrowed it down to just ParaTB. And, it still is not considered the 100% cause of Crohn's...because not all patients have these certain bacteria.
And that is why I am balking at this theory of bacteria. Not everyone has it. Not everyone is infected. They have already proven that it is genetically related. It is a problem with our immune systems. To me, they just haven't proven why our immune systems attack our bodies like they do whether it is a bacteria or not.
I think also, there is too much information out there that a person can believe in one thing while it might not be the best thing to believe in. When I was first diagnosed I looked for ANY information that would lead to a cure. I have young children, I NEEDED a cure. I would (and still do) read everything I can get my hands on. I have heard theories that it is psychosematic, an immune system malfunction, hereditary, a mutant gene, certain foods, stress, location of the patient, water, fruit juice and a bacteria in that. The list goes on. Until I have seen concrete proof of anything, I can't believe in any one thing. And again, this is just my opinion.
All I am saying is there is way too much information to lock yourself onto one idea. And there is too much crap (pun intended) out there that is nothing but a bunch of bull to believe too. Until my GI's tell me otherwise, I will stick with the genetics and autoimmune theories. And because there are so many theories out there, everyone will believe in what they want to believe in. And again, if this is the reason behind Crohn's, and it is the cure, I will be the first to say I was wrong and give a huge public apology.
Donna
Hey Machinehead, I like you the first couple of weeks searched endlessly on the subject above. What I have found because I have tried almost every diet I have found and none of it has worked. The reason why I bring that up is that you cannot take what you see on the internet as the complete truth. Most of the research I have done shows that CD is more of a genetic related problem and if that is the case it will be at least ten years before we even remotely see any sign of a cure. That is just what I have read. I am happy though to see that you have an interest in your health and the rest of all of our health. If what you the cows milk being infected is what is giving the world CD then props to you for finding it since this is my first time reading this idea.
Good luck
Jeff
Good luck
Jeff
D
Donna
Guest
It is good that you are researching this out. And maybe this thread should be on this particular researching and you should go with your instinct. More power to you!
Just try to remember to be open minded to other ideas as well. There are always several aspects to every disease...
Good luck!!! And like I said, if this is the reason and the cure, then I will be the first to apologize and say I was wrong.
Donna
Just try to remember to be open minded to other ideas as well. There are always several aspects to every disease...
Good luck!!! And like I said, if this is the reason and the cure, then I will be the first to apologize and say I was wrong.
Donna
M
Mozam
Guest
Machinehead,
I've been reading your thoughts and opinions on crohns in the last week, with a lot of interest.After all, that's the beauty of this and other forums - freedom of speech etc.
Well, I have to say something - it's taken me a few days to build up the courage to say it - although I truly congratulate you on the amount of research you've done (where DO you find the time), and some of it is fascinating, I think you are probably the most arrogant, self centred person I've read on this, and other subjects. Your whole "lets fight the battle and win the war" thing is truly admirable, but WAY out of sync with what I believe people on here want. A simple example - when was the last time you posted a light hearted " hey guys, heads up, how you doing?" Seeing as you want to solve the Great Crohns Mystery in record time (you've had the disease what, a week or so?), instead of being so damn clinical i.e LETS GET SOME POLLS STARTED, I'VE GOT AN EXCEL SPREADSHEET FOR MY BOWL (sic) MOVEMENTS, you could actually sound like you care and listen to peoples stories with compassion instead of "thinking outside the box", as you yourself put it the other day. Hey, you're not a doctor by any chance are you?
In the same post you also made what I thought was a pretty pathetic and derogatory remark - apparently you "don't follow lemmings". Are you saying that all the rest of us do? That's what its sounded like to me.
If I'm being out of line here with this post, then I fully apologise - I don't think I am though. I really DO reckon you're pretty arrogant, and not really in tune with what a lot of people on this board are or have already been going through. Correct me if I'm wrong on that one.
I've been reading your thoughts and opinions on crohns in the last week, with a lot of interest.After all, that's the beauty of this and other forums - freedom of speech etc.
Well, I have to say something - it's taken me a few days to build up the courage to say it - although I truly congratulate you on the amount of research you've done (where DO you find the time), and some of it is fascinating, I think you are probably the most arrogant, self centred person I've read on this, and other subjects. Your whole "lets fight the battle and win the war" thing is truly admirable, but WAY out of sync with what I believe people on here want. A simple example - when was the last time you posted a light hearted " hey guys, heads up, how you doing?" Seeing as you want to solve the Great Crohns Mystery in record time (you've had the disease what, a week or so?), instead of being so damn clinical i.e LETS GET SOME POLLS STARTED, I'VE GOT AN EXCEL SPREADSHEET FOR MY BOWL (sic) MOVEMENTS, you could actually sound like you care and listen to peoples stories with compassion instead of "thinking outside the box", as you yourself put it the other day. Hey, you're not a doctor by any chance are you?
In the same post you also made what I thought was a pretty pathetic and derogatory remark - apparently you "don't follow lemmings". Are you saying that all the rest of us do? That's what its sounded like to me.
If I'm being out of line here with this post, then I fully apologise - I don't think I am though. I really DO reckon you're pretty arrogant, and not really in tune with what a lot of people on this board are or have already been going through. Correct me if I'm wrong on that one.
mikeyarmo
Co-Founder
No matter where we are from, what our hobbies are, or our personality types, we are all connected through the same disease. This makes us all connected in a way that most other people cannot. As people with a form of IBD, we all know better than anyone else the types of things we must deal with on a sometimes daily basis. We know what it is like to eat one of your "bad foods", and be stuck to the your bed for a period of time. We know what it is like to be on different medications, and to face the various side effects that come with them. We know what it is like to feel alone, and like noone understands what you are going through.
The topic of a cure for this disease is a sensitive topic to all of us. There surely cannot be one of us here who cannot say that they dream of a day when there can be a cure, and they can become normal again. Who would not love to hear that there is a simple pill or treatment that would rid us forever of watching what we eat, the cramping, the frequent bathroom trips and all the medications and their side effects?
Many of us were shocked when we first were diagnosed with this disease. A lot of people's first reaction is to learn all that they can about it. Well a simple search of Crohn's Disease brings up a lot of information.... 9.44 million websites of information to be exact. An hour spent researching this topic is enough of an information overload to make anyone question what is right and what is real. There is a lot of theories and information, that it is hard to know what is right. Some websites claim that there is no cure, while others say certain diets can stop all effects of the disease for everyone. Still others point to certain products or treatments that are supposed to be the miracle cure.
As a sufferrer of Crohn's Disease I WANT TO believe that these things are all true. I want to believe that the cure is known and that certain steps can be taken to prevent the disease from affecting me. But I have to wonder if this cure is known, why has it not been adopted by everyone? Why are not all doctors in the world made aware of this, and if they are why are they not telling all their patients? When my own doctor has Crohn's Disease and has both sons and other patients with the disease as well, how can I not believe him when he tells me that there is no known cure?
We all want to believe the cure is out there. We want to believe the information we see is correct. And just as important we want to share this with the world, so all others with the disease can get help also. That is what makes a forum such a great tool. Here we can all come together and share our knowledge and experiences with each other, as well as debate any information that is known on the disease.
There is nothing wrong with debate. In fact, with out questioning we can never know how accurate a theory is. Without taking all steps to prove a thoery wrong, we cannot accurately state that the theory is correct. That is why it is great that we can all give our opinions here, and get feedback from others about it.
There are not many rules at this forum, but one is that respect is given to all people. Without questioning the status quo we cannot make progress. However, without listening to the knowledge of those with more experience with this disease and who have taken the time to research, we may be wasting time and going down an all too familiar path. It is devastating to put all the time and effort into the belief that there is a cure, only to find out that your efforts are all for waste. The frustration of this can be saved though, as we can all guide each other to more knowledge through our own experiences.
This community is open to anyone who is affected in some way by this disease. All that is asked is that you respect everyone else, and do not resort to any form of hatred or abuse. As I have stated several times, we are all connected by the same disease, and we all benefit from the involvement of others.
I am going to reopen this thread, as people may want to continue discussing this topic. Disagreements will occur anywhere, but abuse or harrassment of any kind will not be tolerated. Please keep posts in this thread relavent to the discussion.
I hope everyone understands, and now is just as good a time as any to tell you all how proud I am that we all have been able to come together and share so much. The information and support that I have seen here is truly remarkable, and it is honestly thanks to each and everyone of you that this community is so great today. Each one of you contributes so much, and I am really honoured to be part of the same online family with you.
The topic of a cure for this disease is a sensitive topic to all of us. There surely cannot be one of us here who cannot say that they dream of a day when there can be a cure, and they can become normal again. Who would not love to hear that there is a simple pill or treatment that would rid us forever of watching what we eat, the cramping, the frequent bathroom trips and all the medications and their side effects?
Many of us were shocked when we first were diagnosed with this disease. A lot of people's first reaction is to learn all that they can about it. Well a simple search of Crohn's Disease brings up a lot of information.... 9.44 million websites of information to be exact. An hour spent researching this topic is enough of an information overload to make anyone question what is right and what is real. There is a lot of theories and information, that it is hard to know what is right. Some websites claim that there is no cure, while others say certain diets can stop all effects of the disease for everyone. Still others point to certain products or treatments that are supposed to be the miracle cure.
As a sufferrer of Crohn's Disease I WANT TO believe that these things are all true. I want to believe that the cure is known and that certain steps can be taken to prevent the disease from affecting me. But I have to wonder if this cure is known, why has it not been adopted by everyone? Why are not all doctors in the world made aware of this, and if they are why are they not telling all their patients? When my own doctor has Crohn's Disease and has both sons and other patients with the disease as well, how can I not believe him when he tells me that there is no known cure?
We all want to believe the cure is out there. We want to believe the information we see is correct. And just as important we want to share this with the world, so all others with the disease can get help also. That is what makes a forum such a great tool. Here we can all come together and share our knowledge and experiences with each other, as well as debate any information that is known on the disease.
There is nothing wrong with debate. In fact, with out questioning we can never know how accurate a theory is. Without taking all steps to prove a thoery wrong, we cannot accurately state that the theory is correct. That is why it is great that we can all give our opinions here, and get feedback from others about it.
There are not many rules at this forum, but one is that respect is given to all people. Without questioning the status quo we cannot make progress. However, without listening to the knowledge of those with more experience with this disease and who have taken the time to research, we may be wasting time and going down an all too familiar path. It is devastating to put all the time and effort into the belief that there is a cure, only to find out that your efforts are all for waste. The frustration of this can be saved though, as we can all guide each other to more knowledge through our own experiences.
This community is open to anyone who is affected in some way by this disease. All that is asked is that you respect everyone else, and do not resort to any form of hatred or abuse. As I have stated several times, we are all connected by the same disease, and we all benefit from the involvement of others.
I am going to reopen this thread, as people may want to continue discussing this topic. Disagreements will occur anywhere, but abuse or harrassment of any kind will not be tolerated. Please keep posts in this thread relavent to the discussion.
I hope everyone understands, and now is just as good a time as any to tell you all how proud I am that we all have been able to come together and share so much. The information and support that I have seen here is truly remarkable, and it is honestly thanks to each and everyone of you that this community is so great today. Each one of you contributes so much, and I am really honoured to be part of the same online family with you.
C
CHRISP2
Guest
just want to say wo good stuff
D
Donna
Guest
I realize this post is for this particular topic of para tb only now, but I for one am a little miffed about some of the things machinehead has said in this post. For instance....
"I didn't realize this was a pity group. I wasn't looking for a group to cry on shoulders and heads up, how you doing sob sob"
Well I am sorry. I didn't come to this site so I could sob about my life or to look for pity. I came here for support and ideas from others about how to live with this really great disease. The nice thing about this group is that IF I wanted to sob about my life, they will listen and pat my back and tell me its ok. I can come and share my life and they can share theirs, and there is no "eeewws" or feelings that you are the only one to suffer this disease and all of the fantastic things it does to you. You have only recently been diagnosed...you haven't yet discovered all of the wonderful ups and downs this disease will do to you. And, I hope you don't. But there will be a time when you will wish you had someone that knew exactly what you are going thru. People without the disease will stand with you, but they wont understand you.
I applaud you for looking for a cure, but I think we were only trying to convey that we have all found our "cures" but were devastated when we found out that it was just one of a million "cures". And we just didn't want you to fall like we did.
Your approach is narrowminded. We have all researched our hearts out, thanks to the new technologies of the web. But if you sit and read into anything, within an hour you can either become blinded by all else, or confused. We have all done it. Maybe if your approach was a little more kind, we wouldn't have debated as we did. I for one went thru a huge denial period. I wasn't sick. And I was going to find the culprit and the cure. I was gonna be ok and have no surgery. Little did I realize I would be begging for surgery just to get relief a year later. I think anyone who is diagnosed with something life altering such as a disease, told you have no cure, and that your life is now one of really high highs, and really low lows, well, you go thru stages. We all have...and you didn't seem to want to hear how we could help...even if only until you did indeed find the cure. Until you found the cure, you would still be a Crohn's sufferer, and we were only trying to help.
Good luck with your research and regime you are going to undergo with the antibiotics. I hope it works, and again, if it "is" the actual cure, and not something that will knock you into remission, I will be the first to apologize profusely.
Donna
"I didn't realize this was a pity group. I wasn't looking for a group to cry on shoulders and heads up, how you doing sob sob"
Well I am sorry. I didn't come to this site so I could sob about my life or to look for pity. I came here for support and ideas from others about how to live with this really great disease. The nice thing about this group is that IF I wanted to sob about my life, they will listen and pat my back and tell me its ok. I can come and share my life and they can share theirs, and there is no "eeewws" or feelings that you are the only one to suffer this disease and all of the fantastic things it does to you. You have only recently been diagnosed...you haven't yet discovered all of the wonderful ups and downs this disease will do to you. And, I hope you don't. But there will be a time when you will wish you had someone that knew exactly what you are going thru. People without the disease will stand with you, but they wont understand you.
I applaud you for looking for a cure, but I think we were only trying to convey that we have all found our "cures" but were devastated when we found out that it was just one of a million "cures". And we just didn't want you to fall like we did.
Your approach is narrowminded. We have all researched our hearts out, thanks to the new technologies of the web. But if you sit and read into anything, within an hour you can either become blinded by all else, or confused. We have all done it. Maybe if your approach was a little more kind, we wouldn't have debated as we did. I for one went thru a huge denial period. I wasn't sick. And I was going to find the culprit and the cure. I was gonna be ok and have no surgery. Little did I realize I would be begging for surgery just to get relief a year later. I think anyone who is diagnosed with something life altering such as a disease, told you have no cure, and that your life is now one of really high highs, and really low lows, well, you go thru stages. We all have...and you didn't seem to want to hear how we could help...even if only until you did indeed find the cure. Until you found the cure, you would still be a Crohn's sufferer, and we were only trying to help.
Good luck with your research and regime you are going to undergo with the antibiotics. I hope it works, and again, if it "is" the actual cure, and not something that will knock you into remission, I will be the first to apologize profusely.
Donna
J
jlbastian
Guest
I actaully know someone with Crohns, probably the worst case I have ever heard about, who has been deathly allergic to all dairy products since birth. I would be very curious as to his take on this exception to his dairy bacteria rule.
Tami Lynn
Forum Angel
Let's face it...none of us know what causes Crohn's disease. More than likely there are many different factors that play a roll-not just one thing.
I mean, why do some people get cancer and others don't?
I'm sure we all hope that one day, all of the puzzle pieces will fit together and they will develop a "cure."
I think Crohn's disease comes straight from the pits of hell! Now if we could prove that was the cause, what would the cure be? LOL Hmmmm.........
God help us all be sensitive and repspectful here and give us a extra portion of tact whenever it is needed (I know I could always use a little more!) lol
Anywho, thank you again for creating this forum Mike. You've taken on quite a challenging role here - please know it is truly appreciated. It's so wonderful to know that we have a place to come where we can share our experiences amongst those who can truly understand what it's like to live as a "Crohnie."
I mean, why do some people get cancer and others don't?
I'm sure we all hope that one day, all of the puzzle pieces will fit together and they will develop a "cure."
I think Crohn's disease comes straight from the pits of hell! Now if we could prove that was the cause, what would the cure be? LOL Hmmmm.........
God help us all be sensitive and repspectful here and give us a extra portion of tact whenever it is needed (I know I could always use a little more!) lol
Anywho, thank you again for creating this forum Mike. You've taken on quite a challenging role here - please know it is truly appreciated. It's so wonderful to know that we have a place to come where we can share our experiences amongst those who can truly understand what it's like to live as a "Crohnie."
K
Kossy
Guest
It was quite intersting the conversation we were having. Now It just looks like I was talking to myself for awhile.kc0eks said:
Basically The Gentleman that started this thread was convinced that Crohn's was due to dairy/milk and that a cocktail of antibiotics were the cure or where the right direction on which this mystery would be solved. And I was just trying to say was he should put all his eggs on one baskets, in his dicision making.
K
Kossy
Guest
The thing is he was responding but got he erased everything he wrote on the entire board.kc0eks said:
And Yes, I feel the same way about the whole milk thing Mike. You can't rule it out but their are some many questions that still arn't answered like why wouldn't the whole family get it instead of us chosen few.
D
Donna
Guest
You know, I was telling my hubby about this idea and he asked why then didn't everyone in America that drank grain fed cow's milk have this disease. It made sense to me. Machinehead said that those that didn't have it were maybe more resilliant than we were. But that then leads back to why we aren't as resilliant as others? Whyyyy you ask? In my opinion it's cuz this disease is an auto-immune disease where we don't have the right chemicals to tell our brains that there is nothing wrong with our intestines like normal people do. (Well not normal, but the ones without Crohn's, IBS and Colitis).
I think milk may be a good theory, but, like most diseases, there are probably several links to why and who. And, he wasn't able to prove to me that milk is the reason...only an instigator if you will. If it was the reason behind Crohn's, then my whole family should be suffering since we all drink the same milk.
Who knows.
I think milk may be a good theory, but, like most diseases, there are probably several links to why and who. And, he wasn't able to prove to me that milk is the reason...only an instigator if you will. If it was the reason behind Crohn's, then my whole family should be suffering since we all drink the same milk.
Who knows.
D
Donna
Guest
I don't even think the question is how does the bacteria get there but instead why are some susceptible while other's aren't.mikeyarmo said:
IF people knew how much dirt they actually eat in a year, some would probably not eat too much of anything. Picking up the bacteria is easy to do. Ever hear of the gross stories about restaraunts? You pick up bacteria from touching the door to the public bathroom, even if you already washed your hands.
My question is why are we more susceptible than others? Why is our gut not only trying to kill the bad, like the normal gut is supposed to do, but also the good?? Why does it think it has to defend what is supposed to be in there in the first place? A normal gut would most likely be able to fight off the para-tb germ...otherwise, the whole world would be filled with Crohn's. After all, people have been feeding their dairy animals grains long before Crohn's was really studied. And everyone would be suffering from some sort of intestinal problem. I think it is like the Ecoli bacteria. We all have it and are supposed to have it, but there is a strain of it that isn't a good bacteria, and that is what causes disentary. But not everyone is susceptible to that either. THat is why I said milk and this bacteria/germ thingy may be an instigator, but not the cause.
Donna
K
Kate
Guest
hey guys have any of you realised that hes actually gone from the site !!!!
D
Donna
Guest
Yeah Kate, we knew...but the thread was "going" to contain info on this particular "cure/reason". Guess it's done. Lol. 
M
Mozam
Guest
Hey Kate/Donna/everybody
The guy left after taking great offence to my post. I had been PM'ing a couple of other members before I posted, and they were of the same viewpoint as me - that the guy was here for purely his own benefit, and not for the benefit of the others on this forum - he expected us to listen to his miracle cure, but when other people queried it, and told him not to pin his hopes on it, HE wasn't prepared to listen to US!. His whole attitude stank as far as I'm concerned, and this was borne out by what he said before he left - about him not realising that this was a "sob story site where we all cry on each others shoulders" or words to that effect. A really lousy cheap shot, basically. The crux of the matter is he couldn't take criticism, and wasn't prepared to listen to other people. With him now having Crohns, I reckon he'd better prepare himself for hearing things that he may not want to accept.
Like Mike says though, case closed - and not that I wanna sound as if i'm ass kissing here (surely a dangerous pastime, what with our condition??!), but in my humble opinion, in Mike we have an administrator who is fair, impartial, intelligent, has wisdom that belies his tender years - and I for one am honoured that 1) he takes the time to provide this platform for us, and 2) that he considers me a friend.
The guy left after taking great offence to my post. I had been PM'ing a couple of other members before I posted, and they were of the same viewpoint as me - that the guy was here for purely his own benefit, and not for the benefit of the others on this forum - he expected us to listen to his miracle cure, but when other people queried it, and told him not to pin his hopes on it, HE wasn't prepared to listen to US!. His whole attitude stank as far as I'm concerned, and this was borne out by what he said before he left - about him not realising that this was a "sob story site where we all cry on each others shoulders" or words to that effect. A really lousy cheap shot, basically. The crux of the matter is he couldn't take criticism, and wasn't prepared to listen to other people. With him now having Crohns, I reckon he'd better prepare himself for hearing things that he may not want to accept.
Like Mike says though, case closed - and not that I wanna sound as if i'm ass kissing here (surely a dangerous pastime, what with our condition??!), but in my humble opinion, in Mike we have an administrator who is fair, impartial, intelligent, has wisdom that belies his tender years - and I for one am honoured that 1) he takes the time to provide this platform for us, and 2) that he considers me a friend.
mikeyarmo
Co-Founder
O Mozam, you have the key to unlock heart . Seriously though, it is unfortunate that this played out the way it did. It has made me to consider allowing anonymous posting in this thread though, so that people can maybe give ideas or opinions without fear of embarrasment. Will get a thread up though about this in full.
. Seriously though, it is unfortunate that this played out the way it did. It has made me to consider allowing anonymous posting in this thread though, so that people can maybe give ideas or opinions without fear of embarrasment. Will get a thread up though about this in full.