Libra55 (((Michelle))) and others...New Crohn's Theory

Discussion in 'Fibromyalgia Main Forum' started by MamaDove, May 15, 2006.

  1. MamaDove

    MamaDove New Member

    I just got on my local newspaper from home and saw this fantastic article I just had to share with you...

    I couldn't possibly write the link out and get it completely correct so I will tell you how I got there...

    Go to newsday.com, that's the paper's home page

    Scroll down the home page to where a highlighted area directs you to the HEALTH & SCIENCE pages...I now forget the title of the article, but it has CROHN'S in the title, you can't miss it...

    It was published today,5/16, so I hope you are on here to see it today, I guess you can always go into the archives tho...

    Hopefully you will get to read it, the jest of it like I have thought, bacterial in nature, most likely due to beef and milk (MAP bacteria, maybe?) and curing is no longer the expensive and possible life-threatening immuno suppressants, but only anti-biotics...Remember in my case, I was on the pred and Cipro for weeks but nothing changed until I went on a high dose of cipro...

    I know you had issues with the pred too...I believe I now have the damage to the shoulders that was a possible side-effect...Necrosis...I am thinking of having it confirmed by mri or xray, but I hate to have more xrays...

    Well, off for now, lemme know what ya think...I know there are others out there with Crohn's, would love to hear from you too...

    Hope all is well and you are feeling as well as you can be and I hope you enjoyed Mother's Day too :)))

    Peaceful days ahead~Alicia
  2. libra55

    libra55 New Member

    So nice to hear from you! Unfortunately I had another flare up of Crohn's and am back on another course of the pred. It's just for a week, a very quick taper. The GI doc called it a "tune up". LOL I have one daughter being confirmed (Catholic) and another graduating first weekend in June, a day apart! Yikes.

    So this flare started 2 weeks ago, first I lost my appetite, then my food tasted funny, bone crushing fatigue hit, and then the cramps and diarrhea, finally the joint pain all developing over the course of about 10 days. So I knew something was not right. I layed low and did the standard BRAT diet and stayed hydrated but to no avail.

    The pred is working and I should have no problems (knock on wood)for a while anyway. I felt quite bewildered and sad because I had done well for 8 months and one of my goals was to be non steroid dependent. Well, stuff happens, I guess I just have to move on. No real damage done. Gotta do what we gotta do.

    That's interesting you mentioned Cipro because that's one of the first drugs I was put on and unfortunately it did not work for me. I am glad it helped you though. I was on it for months.

    I will go and read that link today. I have altered my diet a lot since dx'd with this. I don't eat any processed foods at all. I do consume quite a bit of protein as I was told to do, and take vitamin supplements. No dairy. Vegetables cooked. Salad twice a week. Fruit in moderation. Organic as much as possible ($$$$$$). No soda, alcohol or other carbonated beverages. Limited coffee. I know we can't control Crohn's with diet but every little bit helps.

    I drink a ton of water, one of the things about this disease we lose too much water, goes through the intestines too fast (thus the diarrhea) and we get dehydrated faster than other people. I also keep Gatorade and Pedialyte for emergencies.

    This is such a complicated frustrating disease and to have FM and other things on top of it takes the cake. I know there are others on here with multiple autoimmunes too whether its lupus or MS, it's like you take a few steps forward and then a step or two backward, it's crisis management all the time.

    Hope you've been well and I will get to that link today.

    Cheers!
    Michelle
  3. MamaDove

    MamaDove New Member

    I am sooooo sorry you had another bout with this monster, I was hoping to hear you were still doing well...

    I know you told me that you didn't have any good results with Cipro when you were firt diagnosed...I wonder what the dosage was tho...I originally did the Cipro (250) and the pred (40) and it did nothing until I read Dr. Mirkin's protocol that the Cipro had to be 500mg, twice daily...After only 5 days of adding the higher dose Cipro as well as lowering the pred, all was well...

    I also asked my doc for Flagyl, which I also got from the pharmacy, but hubby and I decided against it due to the side-effects...

    I am very excited for you, two big events for your children coming up...I pray you will be 100% at least for the two days so you can fully enjoy them...

    Try and remember to write me again after you read the article...I believe there were 3 antibiotics listed (none of which I have ever heard of), maybe you can discuss them with your docs...

    I wish I lived in a state where they were willing/able to do testing for MAP bacteria, I believe that would answer most of our concerns...

    Hope you get better by the day on the pred and no more bad side-effects from it this time...I will be thinking of you!
  4. libra55

    libra55 New Member

    I read the article. It certainly has its salient points HOWEVER the thing that confuses me is that in my own particular case my Crohn's is not confined to the intestinal tract - it is EVERYWHERE - my eyes, joints, and skin in addition to my entire GI tract from mouth to rectum.

    It's a multi-systemic condition that in my case mimics Lupus and RA. Therefore I would tend to subscribe more to the autoimmune theory than the MAP bacteria theory because it seems like the MAP is only found in the intestine.

    Would the MAP theory apply more to UC than Crohn's? Since UC is usually confined to the bowels.

    I rarely touch dairy but I do eat meat, but not the red meat usually just chicken, turkey or fish. Boy do I miss ice cream! Just can't handle that any more!

    One of the first things my GI doc asked me was about family history. Since I am adopted I can't tell him anything. I guess he was probing for a genetic link.

    Anyway, thanks for the link. I do a lot of reading about Crohn's even though I may not make up my mind right away what I think of what I've read.

    I am doing better but still crampy; that diarrhea has stopped thank goodness.

    ((((((((Hugs))))))
    Michelle