whipple,s disease?

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biz
New Member


Date Joined Mar 2007
Total Posts : 9
   Posted 9/26/2007 9:37 AM (GMT -7)   
greetings from bristol england.just had all my results sorted and i,ve no cd or uc but have something called whipple,s disease?doc said only about 1000 people in england have it[80% men]aged between 30-60 and the signs are the same as cd and uc.even the doc seemed confused by what they had found which made me feel helpless .anybody heard of this whipples before? many thanks,andy 36 bristol.

Mormor Vicky
Veteran Member


Date Joined Mar 2007
Total Posts : 684
   Posted 9/26/2007 10:08 AM (GMT -7)   
Sorry Andy, I never heard of it either. Good luck though. and I thought you were talking about Mr Whipples and toilet paper (an american commercial from the 70's.) "Don't Squeeze The Charmin"


Vicky / 47 years old
DX'd with Crohn's during a resection August 2006
DX'd with Steriod induced Diabetes November 2006
Considered in Clinical remission but have minor signs of disease activity
 
Daughter (26) also has Crohn's since she was 12.
 
Currently on 4000mg of Pentasa only for Crohn's
No longer able to take 6-MP because of Bone-Marrow Suppression
Cymbalta, Metformin, Lipitor

Post Edited (Mormor Vicky) : 9/26/2007 11:12:43 AM (GMT-6)


JaSanne
Veteran Member


Date Joined Oct 2006
Total Posts : 2041
   Posted 9/26/2007 10:29 AM (GMT -7)   
Hi and welcome,

I've actually heard of this disease but didn't know much about it, so you piqued my curiosity and I went to a U.S. governmental website to see what I could find. The website I use for medical information is http://medlineplus.gov . Anyway, it linked me to this article that may help you understand what you're dealing with in case you're needing more information:

http://digestive.niddk.nih.gov/ddiseases/pubs/whipple/index.htm

I hope your doctor is able to successfully treat you, and that you will be getting better soon. -Joy
48 yr. old. Ileocolitis.  CD since early teens, misdx'd until age 36.  Hemicolectomy-left side in 2001.  Disease returned in 2003. Arthritis, episcleritis, chronic pain due to surgeries (nerve damage, adhesions) and disease.  Recently dx'd scoliosis.  History of endometriosis.


biz
New Member


Date Joined Mar 2007
Total Posts : 9
   Posted 9/26/2007 10:52 AM (GMT -7)   
many thanks and thank you for your time.i did a search and found plenty of imformation on wipples and can see why they thought i had cd or uc.i,m still confused that the doc at the hospital had not done is homework and sent me home with no drugs or proper imformation as all the websites i went on said wipple,s disease can be fatal? mad

JaSanne
Veteran Member


Date Joined Oct 2006
Total Posts : 2041
   Posted 9/26/2007 10:59 AM (GMT -7)   
I read the same thing. That article said it's treated with antibiotics, so I'm thinking you need to call your doctor and find out why he's not treating you with antibiotics or anything. That's worrisome!
48 yr. old. Ileocolitis.  CD since early teens, misdx'd until age 36.  Hemicolectomy-left side in 2001.  Disease returned in 2003. Arthritis, episcleritis, chronic pain due to surgeries (nerve damage, adhesions) and disease.  Recently dx'd scoliosis.  History of endometriosis.


beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1091
   Posted 9/26/2007 12:28 PM (GMT -7)   
When I was hospitalized twice last year, my doctors thought I might have Whipple's disease. It's a very rare bacterial infection with symptoms similar to Crohn's. But after lots of tests it turned out I have Crohn's.

There was a show on The Learning Channel here in the states about a man who was diagnosed with Whipple's disease. The show is called "Mystery Diagnosis," and it focuses on people with unusual diseases that take a long time to get figured out. Once they figured it out for him, they got him on the right antibiotics and he is doing really well.

Good luck with the treatment. Now that they know what it is, they should be able to treat it successfully with antibiotics.

whipple lady
New Member


Date Joined Dec 2011
Total Posts : 1
   Posted 12/2/2011 3:08 PM (GMT -7)   
hi, i also have whipples disease and when i was first diagnosed sometime around 1995, the doctors were confused about me too. I was told 2 years ago that my whipples disease was back and i will see my consultant soon to find out if i will be finishing my antibiotic treatment. As its been a long time since you posted this i hope that you did get your treatment in the end and are feeling better by now. I also realise that you may never look at this post lol. 

JasonCPhT
Veteran Member


Date Joined Jun 2006
Total Posts : 619
   Posted 12/3/2011 7:34 PM (GMT -7)   
I was diagnosed with Crohn's Disease in April 2005 and in August 2008 with Whipple's Disease as well at the Mayo Clinic in Minnesota. Whipple's treatment is vital and you should strictly adhere to the treatment plan.

The fatality rate of Whipple's Disesase, if left untreated, is 100%.
RIP KEVIN "Kasper" Clotfelter RIP
11/11/1987 - 07/08/2010
Passed Away at Age 22 from Heart Failure due to complications of Crohn's Disease
I am honored to have had Kevin in my life.  His passing left a hole in my heart that can never be filled.
 
 
DX:  Chronic and Complete intestinal VRE Colonization
        CNS Whipple's Disease~ Dx @ The Mayo Clinic
        Irreversable Spinal and Brain Stem Damage from Whipple's
        Organic Brain Disease
 
Meds:  Fentanyl 50mcg
            Morphine Continuous Release 15mg
            Klonopin 4mg
            Lamictal XR 600mg
            Bactrim DS (5 years continuously)
            Lyrica 50mg
            Methamphetamine 40mg
 
 
 
 
 

Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 12/3/2011 9:38 PM (GMT -7)   
So sorry to hear!!
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications:Humira,  Asacol, FolicAcid,  Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Pepcid Complete, Questran,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.
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