No, rare Whipple’s disease isn't the underlying cause of my functional bowel problems (FGID) and other, all over the body symptoms.

[Meleber]

Update: Didn't read the latest letter (December 2021) from my gastroenterologist thoroughly. She wrote to my GP that it is most probable IBS I suffer from.

Hi, still struggling to get a diagnosis for my functional bowel problems in combination with all the other chronic all over the body symptoms. Did speak with the rheumatologist lately about Whipple’s disease (systemic bacterial infection) as a possible root cause of my chronic health issues (since my early childhood, I'm 53 now). Based on his current knowledge he doesn't think it's Whipple’s disease. However he's willing to do some additional examinations/test but no upper endoscopy of my small bowel or pcr test. That's why I ordered a PCR test for Whipple’s disease myself. Just trying to exclude possibilities (isn't that what the physicians should do?). Also because I felt well while taking systemic antibiotics (penicilline or tetracycline) and became sick again after the courses of antibiotics stopped. For me this is an indication that it is microbiome/bacteria related.

Addendum: The gastroenterologist, neurologist, psychiatrist and all the other consultants I did see throughout my life don't know what's causing all my symptoms. So got diagnosed with different disorders and syndromes without finding a root cause till now.

[Luisa22]

I am sorry, but I don't know much about Whipple's disease, so hope you get someone else posting here who might?

But I know that SIBO (small intestinal bacterial overgrowth) can often respond positively to a course of antibiotics, and then come back a little while after the course has finished.

Also if something has caused 'leaky gut' (when the tight junctions in the gut aren't so tight, and allow all sorts into the bloodstream) can cause other symptoms in the body. I have heard Zonulin can help that. But I am not a doctor or any kind of expert on it all, so check out those things for yourself and see what you think.

[Meleber in reply to Luisa22]

Thanks for replying. I did some research myself on Whipple’s disease and that's why I suggested it to the rheumatologist as possible underlying cause. I could already have been infected in my early childhood, living in a small village and having a friend who's parents where farmers. Also because it's contagious, I could have been infected by one of my parents. My father has symptoms that are much alike although he is still denying he's ill (he is 77 now). But I can see now that if you never have felt the difference between feeling well or sick, as I have when using the courses of antibiotics, you just don't know and adapt, keep on living with your own peculiarities.

[Luisa22 in reply to Meleber]

Yes, it's a nasty disease. I read up on it. I live in a farming area too and have done for 38 years, and I have a lot of hands-on contact with 'earthy' situations, and animals etc. My symptoms are different though fortunately.

I hear a 1 or 2 year antibiotic course is generally best! Wow...

I hope your doctors can get to the bottom of it. Will you have a PCR test? It would be good if it was diagnosed and treated successfully.

[Meleber in reply to Luisa22]

In first instance the rheumatologist doesn't want to order the 'basic examinations' for Whipple’s disease like an upper endoscopy of my small bowel because he thinks it isn't Whipple's, based on his current knowledge. That's why I did order a PCR test on my own expenses. I'm going to have some blood drawn this morning. The rheumatologist however did order the following examinations for me, these still have to be done:

CRP/BSE

M-prot

Tryptase, NT-proBNP, lues

vet(=fat)biopt

And yes, if it should be Whipple’s disease the courses of antibiotics will be long, maybe lifelong. But at least it's treatable. The only somewhat worrying question is how much damage the chronic life long systemic inflammation, as consequence of the bacterial infection has already caused to my body (the organs). But I shouldn't pre-empt (is it a correct English word to be used in this context ?) on the results of the tests/examinations that still have to be done.

[Liz1234ty]

Hi, have you considered lyme disease? Unfortunately no way of testing now after all the time that has elapsed but perhaps worth looking into ads that can hang about causing multiple issue for many many years. I also wondered if antibiotics help but you are struggling to get a prescription, have you tried probiotics? There are some ones with scientific studies to back them up.

[Meleber]

A lot of probable causes have already been excluded for my functional bowel problems.

Tried many different probiotics in the past but none of them where really helpful.

Never considered Lyme disease and this was also not in the mind of the different consultants I already saw.

Will contact the gastroenterologist again after my consults with the rheumatologist are finished, he has made up his final diagnosis and has sent his remarks to the neurologist, so she also can close my file. The neurologist did refer me to the rheumatologist for his opinion bacause of certain symptoms.

Most probably no root cause will be found for my functional bowel problems with (slow transit) constipation (due to methane, intestinal methane overgrowth (IMO?) and overflow diarrhea and all the other all over the body symptoms. Had a breath test but only for hydrogen, which was negative. Methane couldn't be tested in the hospital.

[Meleber in reply to Meleber]

Got the result of the PCR test for Whipple’s disease and it is negative, which is positive 🙂

So it looks like IBS and this is what the gastroenterologist also wrote to my GP in December 2021, most probable IBS. Asked the gastroenterologist for a trial with neomycin but this antibiotic is no longer used / available in the Netherlands.

[Meleber in reply to Meleber]

Since IMO, intestinal methane overgrowth, hasn't been excluded yet as possible cause for the symptoms, the functional gastrointestinal bowel disorder with constipation and overflow diarrhoea, it's perhaps an idea to ask for a second opinion in a tertiary hospital . The treating gastroenterologist did sent my medical file back to the GP last year but she couldn't rule out a problem with methane producing organisms in my intestines.

[Meleber in reply to Meleber]

My GP did refer me to a tertiary hospital (University hospital). Now wait and see if I really will be invited so I can discuss my health problems and the possibility of treating these by using an antibiotic on a chronic cyclic basis. As I mentioned in other posts on this forum I can remember vividly how well I felt while using a tetracycline or amoxicillin clavulanate antibiotic and how much my overall health deteriorated (slowly but progressively ) after the antibiotic was no longer in my body, because the course had been completed.