As you guys can see in my profile, I have been fighting PSC its been 13 years.
Recently I have decided to persue new and alternative routes to stability and to live well.
I found Chinese medicine as an help full tool.
- Diet: replace Meat (Catle, Pork, Chicken) to fish and vegetables. Avoid large meals during dinner. Eat plenty of vegetables and fruit. The secret is to go to bed with liver and gastrointestinal system free to regeneration!
- Acumpulture sessions once a week
- Exercise: move your body at least four times a week (in my case, three running sessions - 5 miles - per week and two gym - weight lifting - sessions per week)
- No more crisis! Since started the new routine, bad digestion, liver pains, infection or fever have never showed up again!
- Medicine reduction: during last three years I have been taking daily anti-biotics. With this treatment I have benn able to cut it!
- Skin redness/ itching: have just went away!
- Level of energy and disposition: just went high.
I found interesting sharing my experience with the community as I really feel renewed!
Hope you find your balance!
What was the daily antibiotic for during the last 3 years?
Other than maybe vanco, that seems problematic and unnecessary
In general, these are probably good guidelines for everybody regardless of psc
I’m so happy to see that you’re doing well! I think diet and exercise have huge impact on how we feel. I know when I eat a healthy I have little to no liver pain, no itching and much more energy. I think eating healthy and exercising is a no brainer for everyone. When I’m at work and I watch my co-worker eat big sweet rolls, cream laden soups and sugary fruit, then complain that her belly is bulging and her body aches I just have to bite my tongue. I have also integrated probiotics and progurt into my daily regime. I hope to continue to feel well and look as healthy as I feel!
Thank you for sharing.
Ted, daily antibiotic was BACTRIN 1 cap/day.
i tried acupuncture only once and i believe that it could not be any positive effect on me. doctors in this area says one seance is not enough for any benefit but i didnt feel anything. on the other hand, i sometimes do yoga on my own with a book and i can say it works i feel fresh.
diet and sport are really important factors. especially diet... i am confused about which diet i should be apply. (scd, gluten free diet etc.) and also i can not be disciplined in kitchen. i need a real reform. (ps: i was a fan of fast foods in my history, bad bad mistakes :)
I would like to know what Chinese medicine program and/or are you are taking something by mouth? Did you read a book or a website with these suggestions?
What you have achieved is remarkable!!
Im currently fighting PSC andhave had several admissions in the last 7months.
Ive also just had my inflammed gall bladder removed with clearance of bile ducts within intrahepatic ducts at the same time.
Now recovering and trying my best to get my mind set sorted as really anxiois about the future etc.
Tired of re-occuring cholangistis! Losing the world to live at times but try and stay strong for my 2 caring little children who I adore.
If possible if i could get more information on your tried and trated diet, ie on type of fish , recipes etc it would be amazing.
Also if anybody out there can help with any additional support i would be ber grateful.
I hope someone more knowledgeable and experienced folks will chime in to help. Please check on oral Vancomycin, there are few folks on here from Europe using Vancomycin with good to great results. You may want to reach out to them to get the logistics of traveling and getting oral Vancomycin from USA. During our conversations with Dr.Yinka Davies she was open to talk and prescribe vanco to anyone in the world and it doesn’t hurt to talk/email to her once. Dr.Davies suggests to use only ANI/generic brand but looks like others are using firvanq and cutispharma brands with varying degree of success.
You need to find your inner strength for you and your family to stay strong and get thru this. We are sorry that you are going thru this at a age where you should be in your prime health and enjoying the life with your family & friends. We were in a very dark space as well few months ago once my 6 year old boy was diagnosed with psc/aih/ibd after a misdiagnosis of wilson’s for almost a year. Learning more details about this disease, basic anatomy, all available options of treatment and their results, excellent feedback from a lot of folks on this website helped us a lot.
Based on my limited experience and knowledge, a potential cure for this might be a combination of specific antibiotic & probiotics or some other novel idea. Again what works for someone may not work that effectively for others too. I am not so sure about any type of bile stimulants even though they relieve some symptoms. My son is still on urso/aza/prednisone/mesalamine and are eager to move to Vancomycin.
Irrespective of what the doctors and others say, food makes lot of impact. Food alone may not cure this disease but gives your body necessary support to help deal with it. Increase your Fiber, vegetable protein/lean protein, eat plenty of greens, avoid gluten/ dairy if you can and get active to bring more strength into your body. Make pubmed and nih your best buddies to get more knowledge on what works. I will leave some examples.
Again, I am not that well versed with PSC or its complications and we are just beginning our journey. Take advice with a pinch of salt and hopefully others with more experience will chime in.