Taking a Poll non-Alcoholic PBC - PBC Foundation

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Taking a Poll non-Alcoholic PBC

Sdone
Sdone

It would be enlightening to have a survey of those of us with Pbc or potential Pbc who are non-drinkers and see what lifestyle, -diet, family history , and medications we have in common to potentially identify the causes or what to stay away from that may worsen condition . How to do this on a grand scale I am unsure .

13 Replies
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maybe a large list of possible triggers with a yes/no tick, if you have those possible factors... age gender, age of first symptoms, event... if one you had one before on of symptoms.

and an other category for things that haven't been included... limited to a couple of lines...

space could be a problem!!!

just a few thoughts...

if just for our own interests ee we don't have to follow any strict protocol.

think there was a survey into several things a few years back... might have been through pbc association... might be worth looking at that for things to leave out put in... i can't remember there being any major conclusions.

i remember they included hair dye and nail polish... but neither of those applied to me.

good idea... probably someone handy with a comp would need to write a survey.

maybe.. do a pbc Facebook group...

good luck.

SharonM69
SharonM69 in reply to cazer

I was a drinker, smoker, bleached my hair for 30 years, and used nail polish. I also used to scrub my floors with neat bleach I have a feeling the bleach is to blame. I don't do any of the above now and have a healthy diet. My disease was discovered early and hasn't progressed since taking urso.

cazer
cazer in reply to SharonM69

would be surprised if it was bleach. alcohol doesn't cause pbc either. best cazer

Sdone
Sdone in reply to SharonM69

ThAnk you for sharing! Glad you are managing it

Sdone
Sdone in reply to cazer

Great suggestions

The Foundation were involved in one maybe 10 years ago.

PBC has nothing at all to do with alcohol.

That said, we are now looking at forming a formal registry of all the patients registered with us to try and glean more information which could help with this kind of study. It won't be this week, but watch this space...

cazer
cazer in reply to PBCRobert

thanks Robert.... where did ten years go.. ha ha!!!

were there any conclusions from the survey??

my own personal theory is that we have weaker systems and when we have a virus, illness, major toll on system.. a bereavement or similar it knocks the pbc further on causing worse damage to the liver... for instance I had 4 children and glandular fever whilst pregnant with the last one... this is the point at which I had severe problems i got diagnosed. however in my 20s ihad a few nasty viruses and now looking back that is when mild symptoms started.

i feel all stresses or illnesses have a cumulative effect on how quickly pbc progresses.

so some only have mild symptoms and are much older before they have any major problems.

i had masses of tonsillitis as a teenager and don't think that helped. i know i toxoplasmosis in my twentys... the bug you get from cats /dogs.

it would be really great if there is another survey being planned.

don't think anyone should be kicking themselves for using hair dye etc... its probably nothing to do with it... and if we started worrying about all these things we would have to live in a sterile environment.

do i remember some research showing a higher cluster near reservoirs???

very interesting.

best wishes cazer

Sdone
Sdone in reply to PBCRobert

Wonderful! It could be helpful to know! Thank you

Hidden
Hidden

I like your thinking, massive task though. I for one would like to see a question on past surgery.. including child birth for females not necessarily what surgery, but if there were any post operative infections known or recorded. The things currently looked at all seem to centre around what we do to ourselves maybe time to look in a new direction.

I am not a drinker and have always lived a very healthy life never overweight and exercise everyday i am 57 and stage 2 white female hope this helps.

I am on watch list for Pbc. My sister was diagnosed with Pbc in her late 50s and is on Urso. We both do not drink at all. In my late teens i always had digestive issues n get bad flus often . Lactose intolerance at 17, ibs at 29, gluten intolerance at 32, fibromyalgia 44 ,gastroparesis at 44 & first elevated ama . Was always on anribiotic or naproxen for pain for many years. I suspect the meds are what have given me the elevated pbc.

cazer
cazer in reply to Sdone

i do wonder about the antibiotics... i had a lot for tonsillitis... does it set off an overdrive in antibodies or do our bodies make new faulty misfiring ones when we are given the antibiotics.

i was also told i do not have not enough of one type of antibodies hence being unable to get rid of the sore throats.

i find it fascinating... but where to start or focus is the difficult question.

maybe a basic questionnaire e. g have you had lots of infections during your life, surgeries, trauma, etc then see the response and if there is an obvious culprit then maybe look more into that.

if the pbc site would allow a basic survey, no names etc just anonymous that could be a starting point... perhaps if a small group devised a list of questions... yes or no answers.... just all thoughts.. as you say a huge task but maybe worth a go????

best cazer.

Hi Cazer, i thnk that is on the right track for a potentially insightful view of any links to PBC..

I have had many reoccurring nfections snce my mid twenties.

1st AMA positive followed a regular regimen for 1.5 weeks of Tylenol Pm for pain n sleep issues back n 2010 when i had a fecal impaction at a young age. Liver biopsy normal 2010.

Normal ama for almost 7 years until last summer after being prescribed metrogel for a reoccuring infection took for 5 months—-2 months later severe leg spasms , weakness reoccurring, highesr ama. Elevated ast n alt.

7 months later no pills other than supplements all readings normal exept cholesterol and elevated Ama.

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