Hello everyone. This is my first post. I was diagnosed with PBC in 2015. Have been on URSO since. As of today I am an URSO responder and I am asymptomatic. I have been doing a lot of research on trying to heal the body and reduce inflammation. In hopes of "reversing the disease". I recently met with a naturopathy doctor. After all her testing. Her treatment plan consists of a nutrition (eliminating sugar, eating whole foods, and eating essential fatty oils), exercise, taking Standard Process supplements, and having acupuncture many times a week and gradually declining the amount. She also told me to stop taking my Calcium and Vit D. Has anyone tried acupuncture as a treatment for PBC? I am a little leery, as my research shows acupuncture is more helpful with pain.
Kishna Silva
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kishna
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Hi there - I’ve been diagnosed with PBC for a year and am Urso recently. I have been going to acupuncture and I can’t imagine it not helping. Hard to tell though as I am also asymptomatic.
Bravo for your courage to think "outside of the box". I have had many, many acupuncture treatments with some amazing practitioners. While they all felt confident that, yes, they could help me, the end result is the same as when I started. After spending many thousands of dollars on 3x weekly visits, my labs still come back with high LFT's and SGOT.
Although, my fibroscan is normal and I am AMA negative(a rarer form of PBC) ,in the end, I still have to be aware of everything I place in my body. This is not to say the your results might not be different. I initially went to acupuncture for the itching. Her best guess was that my liver was congested and that I had become allergic to foods I had eaten previously with no problems. So, after $$$$$ spent, I reverted back to a very limited diet and eliminated nuts, eggs, dairy, any animal protein, fish. This went on for over a year until I was able to clean up my liver a little. Then one at a time, I reintroduced foods into my system. Knock on wood, haven't had a bad itch in awhile, but then again, all this happened during some major live event stressors. I use Standard Process Liveplex daily along with milk thistle and other supplements. At one time I did see a Naturopath who had me use several of the products that were muscle tested on me. The result was terrible. Too much for me to handle. We all find our own way here and hopefully get to know our bodies along this journey. For me, as much as I want to believe there has to be a fix for this, I am tired of fighting it. Been doing this for over 21 years now and have spent enough money to fund a small country. I fully understanding the drive to find the cure. I have done liver cleanses, whole body cleanse with crazy methods, gone vegan, raw, paleo, you name it. I feel rather good most days. Sometimes the fatigue kicks in early in the day and I just have to rest. Other days, I'm climbing the cliffs....go figure.
Please let us know how you journey progresses. I am allergic to URSO, so i have no other choice but to stay healthy in mind, body and spirit...Time to get ready for a yoga class while i have the energy...Be well
I have considered doing a natural liver cleanse, the kind using olive oil, lemon, etc. I’ve been a little hesitant for fear that it might make things worse not better, but it seems if it worked it could be a big help. If you have done that, do you feel it was helpful?
Happy Saturday...I have actually done the Dr. Schulze Incurable Disease cleanse. 30 days of juicing, special teas, tinctures, liver flush drinks, hot/cold showers after dry brushing, and the special detox bathes with supervision, and colonics. The liver flush was the olive oil garlic, juice concoction. The garlic increases daily for 5 days....not for the faint of heart. Did it help???? Numbers really did not change much, however, I felt great and like I was glowing. I remember that during the last 5 days of the juicing, I was calling friends to encourage me not to eat any solid foods. I made it through the entire process. At the time he charged $450 USD for the cleanse. Go to herbdoc.com. He might well still offer it. Hope this helps
Thank you for sharing your experience. I think at this time I am going to opt out of the acupuncture. I cannot find any research that supports helping patients with PBC.
I hear you...It did help with anxiety and a "balancing of hormones, but not the PBC. My gal was from China and trained there for many years. Easily a 3 hour treatment with about 100 needles each time. Very thorough. If she couldn't figure it out, then i don't know who could. I did however have her put a few extra in my face during treatment. That was marvelous
thanks, urso has help my itching but I am having trouble with a low grade fever some evening and when I do I feel like I have a virus, other wise I am ok. Wonder if any one is having this problem . yes I do have trouble feeling tired.
URSO caused me to have a sporadic itch within 2 days of taking it. The itch always came back. It progressed to huge welts on my rear and thighs. Dr said allergic. I’ve been on ocaliva since, with no issues.
Very interested to see how this goes. I’m recently diagnosed and hate the thought of taking medication for the rest of my life. I’m only 51 and have no symptoms. Diagnosed as a result of annual blood work.
I've had a bit of acupuncture treatment and it's been very helpful. For me, I believe my inflammation is exacerbated by stress and acupuncture has always helped with that. My 'itching' comes in the form of extreme leg pain and acupuncture can help with that. Gall bladder and liver meridians run along the legs. It's also helped with gall bladder headaches. My naturopath has me on vit d for life. I can't imagine why she'd want you off. For me, my body aches kick up as soon as I forget to take it for a week or so, but I'm further along than you. My naturopath has cut back on my calcium for fear of cardiovascular issues, but I still take some as PBC is known to mess with bone mass. I take many other supps and they help. I believe they've kep me off some of the other meds folks who have advanced use.. who knows ;). Good luck. You sound like someone who explores her options. You'll find your way with this, too. 💕
Thanks for sharing your experience with acupuncture. I am opting out of trying it for now. But, I do believe if you are stressed or in pain. It does help.
I'm curious if stopping Vit. D will change your #s. I actually think taking it is the reason(along with liver friendly eating) my numbers have gone down. My doctor thinks I'm reacting well to Urso and is thrilled with my numbers but the truth is I've not taken at all. In just 6 months my LFTs n ALPs are all normal.
I've taken several steps to help my condition. I no longer drink alcohol, eat red meat, or eat avocados/avocado oil (this last one was a personal choice as I was eating 1 to 2 avocados a day and cooking with tons of avocado oil.) I've started eating dandelion greens, lots more salmon and other fish as well. I've also cut back on sugar and salt. If I need a sweetener I will use stevia and raw sugar if I don't have stevia. My foods are a bit bland without the salt but I'm used to it by now. I'm also drinking more tea. Chamomile is great but I highly recommend tulsi tea which is holy basil, good for the liver. I'm also taking milk thistle as a supplement and a baby aspirin every other day(this was recommended by my GI. He said it not just thins the blood but all body fluids including bile acids). I do believe that vitamin D and sunshine have helped me as well. I'm not sure if chemicals and heavy metals affects us but I try to clean with vinegar and baking soda instead of bleach or other chemicals. I've also cut back on the use of hair dyes and make up.
I made these changes after reading a very interesting article. I took what I found beneficial and I applied it to my life. I'm including the link to article as you might get something from it as well. Please do message me with your progress and if you find some other ways to help improve you PBC.
I was diagnosed last year with AIH and PBC. Since the doctors know very little about this disease, my approach is to experiment. I did see a Naturopath, but after 4 months, $ and no shift in my lfts I stopped. Every Naturopath's approach is different, so it might be worth a try. For me there were other experiments I wanted to try. I'm currently following an AIP diet (autoimmune protocol) and doing intermittent fasting 2 days/week. I have seen that when I'm strict with my diet, my Alk P drops ~20%. I'd love to get to the point that I can go off the prednisone and Imuran.
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Has anyone ever "gotten off" Urso?
PBC Stage 0, no medication 
newly diagnosed
