Crohn's Disease Forum » Books, Multimedia, Research & News » Genes, virus and injury= Crohn's

09-07-2010, 02:05 PM   #1
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Genes, virus and injury= Crohn's

Just got this on my email,interesting and a good read!
09-07-2010, 04:08 PM   #2
D Bergy
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This is one of the most important pieces of research I have read concerning Crohn's.

I had already targeted the XMRV virus, but later research indicated that the real culprit may be murine norovirus as the article states. This was in reference to CFS, but not Crohn's. this is the first time I have seen these type of viruses possibly implicated in Crohn's Disease.

For those that are interested in my XMRV experiment, you should be able to bring it up with a search using the viruses name.

I had already thought that being they are both autoimmune, they may have the same original pathenogenic cause. Of course it was pure speculation.

I will be experimenting with this more, as I get time.

Thank you for bringing this to our attention.

Nothing I post here is to be construed as medical advice. I am not a doctor or health professional.
They are simply my opinions.
09-07-2010, 06:32 PM   #3
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Thanks Dan, I was thinking last night before I found this site, my first real episode. When I was 15 I was a counsellor in training and we were on a survival canoeing trip and we canoed for 5 days, drinking the waters (no motorized boats, because of portaging). We also had a cooler but back in those days, in the early 70's things didn't keep. So the morning before we were leaving the next day,we ate the bacon... that night OH MY GAWD, was I sick, and we were in tents and they all took turns looking after me , vomiting, dizzy, and hot and cold.

The next morning I was feeling alot better but we had a ways to canoe to meet the camp director and we finally got there and we were on the bus and everyone of the other girls were so sick! The camp director wondered why I wasnt. Told him I had it last night.

So I googled reading this norovirus and it fits to a T!!!! Never thought nothing of it. The next year I was back at camp and broke out in a poison ivy break out, and then the Diahreah was on and off. I cannot believe after 30 some odd years, I am just figuring it out now!!!

AS for injury, always had knee problems, but nothing bad comes to mind. Wow... I am kinda stunned right now. It crept on me for many years, and finally at 32 after having my daughter was my worst and lead to my resection!

This article is true!!!
09-07-2010, 07:23 PM   #4
D Bergy
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The first question is if it is conclusive, which I am sure it is not.

The next question is "can the virus be eliminated from the body"? I am guessing it cannot by conventional methods, but I do have an unconventional method that may be able to do it. I have to consult with a researcher I know, and see if this virus or group of viruses, whichever the case may be, has been genetically sequenced.

The last question is even if it can be eliminated, does that mean the genetic changes the virus has made in the body make it irrelevant whether the virus is there or not? In another words, the change may not be reversible.

It would be really helpful to have an accurate test to see if we have been exposed to this virus, as you have a specific event that may be related to such an exposure.

I need to find some things out, and ask some questions, but it is another avenue to explore.

09-07-2010, 08:10 PM   #5
D Bergy
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Another thing that comes to mind is that by using MMS, I believe I accomplished much of what they did by wiping out many of the microbes that have to be present, to develop the disease.

MMS is not approved to treat anything, and the FDA has banned its sale and does not recommend its use for any treatment of disease.

I will continue to use it, as I have found nothing better for my disease symptoms.

09-07-2010, 09:15 PM   #6
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Who knows, what ever works to keep our Crohns at bay. Do you have siblings with IBD? I do all 5 of us and grandmother but NOT my mom, she was a carrier. Also my mom has RHfactor blood and I am O positive, and she had contracted German measles in her first trimester with me and was said a few years ago in readers digest, that some diseases are Crohns from that. So I have lots working against me, but the only two good things I count my blessings are is my daughter and my husband. I try to avoid stress. But I am a worrier by nature.
09-07-2010, 09:40 PM   #7
D Bergy
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None of my four siblings has Crohn's, or any other other diagnosed autoimmune disease.

My youngest brother does have psoriasis on his right shin, as I do. Since I am the oldest, it may show up later on with them, if they have the disease.

Two of my three children have other autoimmune diseases, and the third one has some symptoms that could be Crohn's.

My daughter has Celiac Sprue. My youngest son has Hidradenitis Suppurativa. Both of these can accompany Crohn's disease, and I do not think that is coincidental.

Those are some other reasons I work hard to understand the mechanisms of autoimmune diseases in particular.

09-07-2010, 11:40 PM   #8
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Very interesting!!! The antibiotics they use now are suppose to kill off every bacteria in our bodies. Maybe they leave some behind, do they not work on microbes, what's the difference? These may sound like stupid questions, but maybe not from the ignorant........ Who wants to learn more about other treatments....... Is deathly afraid of and don't want to resort to biologic immune suppressors. Haven't enough guts to try MMS, I know where I can get it. Don't have a clue who to harass for LDN. But not giving up on that yet. Ran into a fellow today 65 years old. Has been very hard on his body through the years, yes, and has lived with Crohns for 20 years. He has tried everything conventional medicine can throw at it and now is resorting to pain aids and has 8 inches of small bowel left.

Do you have links handy that you can post, so I can start reading the same information you have? Googled both virus names and am overwhelmed with all the sites. I would really appreciate it.
09-07-2010, 11:58 PM   #9
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This is really promising and exciting information! Great link!
Toni, Diagnosed in September '08
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09-08-2010, 01:55 AM   #10
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This is amazing research and really fits with the intuition I've had about it. I had norovirus (mildly) a month before I developed two uncomplicated ulcers on my duodenum.

I had some sort of horrible viral infection that was going around the tiny town I live in last May, which consisted of painful diarrhea for a month. Horrible. I haven't been quite right since, with random, very occasional night bouts of near-diarrhea and nausea, but now my current pain. It feels related.
09-08-2010, 03:36 AM   #11
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this is fascinating - thanks Pen for posting the link!

as soon as i read the article, i thought of DB with the MMS treatment, so i'm not surprised to read his thoughts on it..

i've suspected for years that Crohn's Disease is an inhereted tendency... and other triggers are needed to actually cause it to become Crohn's. i have my own suspicions regarding what triggered mine, and there are many factors i think played a part.

reading articles like this gives me great hope that people out there are researching on behalf of sufferers like ourselves for a cure, and that one day it will happen.
09-08-2010, 07:31 AM   #12
D Bergy
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It is funny that you mentioned the 65 year old guy you met Riversilt.

When I was in the Hospital recovering from my resection, I was a room mate with a guy that I thought was at least that old. I assumed he was retired as he looked 20 years older than myself at the time. I heard him say his actual age, which was younger than myself and I almost called him a liar. My wife couldn't believe it either. I was about 45 at that time.

This guy had Crohn's for many years, and he was physically devastated and his body was actually much older than it should have been from it. This was a turning point for myself, as I was not going to end up like him if there was anything in my power to prevent it.

I have never forgot that guy, and it was my good fortune that I met him. He was a real nice person and showed me around the place, as he had been there a lot. He had a great attitude for someone who had suffered so much. He also had several surgeries and had some of his guts removed each time.

The genetic factor is pretty much a lock in my opinion. There is so much evidence supporting it. The virus part is not as solid, but I think it is starting to look like that there is a pathogen of some kind that is changing the immune function in the genetically susceptible. It is not impossible that there could be more than one pathogen involved, but a retro virus is the most likely candidate since they are known to do this.

Once the initial virus has done its work, I am sure there are many other pathogens involved that are opportunistic. Once the immune system is not working right, they can exist where they normally could not.

The research involving these viruses is very tentative at this point. It has just emerged in the last couple of years, and this is involving Chronic Fatique Syndrome, and Fibromyalgia. Crohn's is new to me, so this is razor edge research concerning us.

I have already treated with an unapproved method for the XMRV virus which is a close relative of the murine norovirus. I did have immediate reactions to the treatment, but I do not believe it cured me. I was using a very weak method of treatment, compared to what I have available today. I treated again for it last night with my more powerful method. I felt nothing, but usually you do not feel anything. I will continue treating XMRV for a few more days and see what happens. It may be genetically close enough to the murine norovirus group of viruses to affect it.

I get my information from various sites and research. Much of it comes from Lyme Disease sites which are also interested in these viruses as a possible co-infection that may be part of the Lyme Disease problem.

I also get some information from an independent researcher who has a great deal of interest in this type of thing. She also is smart as a whip.

It is heartening to know some real researchers are barking up the right tree. Now if it is not buried, or forgotten, it may lead to something. I will likely know before they do, if it is viable to treat this virus or not. I can get rid of enough of the microbes to be symptom free, but I would not say it has cured me. I know the difference, and I am not cured.

I think you would need multiple antibiotics to accomplish a total elimination of all of the affected microbes they are referring to. Microbes just means microscopic life basically, so they are not being real specific. That is difficult to do, but it is possible. It is not risk free by any means either, but if it can cure, that makes it much more appealing.

09-08-2010, 07:43 AM   #13
Crohn's 35
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I think the virus itself isnt the only culprit but I feel it is what triggers Crohn's and like Cancer it is there as a hereditary gene and something sets it off. My daughter is going back to University next week and she has access to things because she is in the medical classes and her one class is kenesiolgy bio mechanics. So when she gets settled she will start researching and all her professors love her so they will help her as well.

Most cures or results are always because they stumble upon something from trying to cure something else. Like Remicade was for Arthritis...years later boom, helps other anti inflammatory diseases. I know there is a cure out there somewhere, just hope if is in my lifetime.

I also red that Pediatric doctors are saying Canadian babies have the highest incidence int the whole world, so you have to wonder. Why, how, and why here?

BTW I had the money sense magazine and out of 100 charities there is not ONE mention of any type of IBD funding. CCFC and CCFA (not sure of CCFA) is a non profit org. Awareness is needed so much...sorry to ramble, it's the coffee!
09-08-2010, 03:44 PM   #14
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This is interesting Pen, thanks,
some food for thought.
When I got my dx 5 years ago the first question that I asked Dr Bassi was 'How did I get it?'
He said, 'Either bacterially or virally, then it mutated!'
I asked him was it possible I've picked a virus off one of the children I work with?
He said it's unlikely, but not impossible
It's just that my symptoms started when I started working with them 15 years ago! They were only tiny kids then, a lot of poo and vomit on a daily basis, and possibly we were a bit lax with the H&S stuff like gloves and aprons etc. Just something I've always thought about for years!
There is absolutely no one on either side of my family with any IBD.


Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

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09-28-2010, 06:51 AM   #15
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