Has anyone looked into or done the IV alpha lipoic acid infusion treatment for PBC, developed by Dr. Berkson?
I've been diagnosed with overlapping PBC and autoimmune hepatitis and doctors are hesitant to prescribe immunosuppressants since I recently had breast cancer. I'm looking for treatment alternatives. Thanks!!
Not heard of that. I suspect it's only the AIH meds that your docs would be worried about. Urso is not an immunosuppressant.
Perhaps the pbc foundation UK could help/ offer advicePbcfoundation.org.uk
Hi Sanov,
My naturopath recommend his clinic in Las Cruces to me and I am beginning the journey of getting paperwork (medical records) to him and then find a time that I could be there for 1-2 weeks. I have 6 total auto immune conditions of which PBC seems to be the most serious.
I hope to be able to see Dr. Berkson this summer. All modalities of medicine have their place and I try to do all the research myself instead of just doing what my doctor says and I do believe in the body's ability to heal itself when given what it needs.
I have had numerous IVs over the past 20 years which include Vitamin C, Myer's cocktail, Glutathione...to name a few...they have all been really helpful. Happy to share info anytime.
I'd love to hear more about what's been the most helpful for you!!
Hi Sanov, I am new to pbc and have read a little about Dr. Berkson, how are you doing? did you begin his protocol? Would love to hear more about it..........
Hi Diana, hoping all went well with Dr Berkson, any updates on how your feeling? Any guidance with like minded people would be great! Just got a diagnosis and looking to not go down the rabbit hole of conventional med just yet.
Hi there! I'm starting the IV triple antioxidant therapy tomorrow, twice a week for 5 weeks and then review with blood tests. I'm also having ozone therapy twice a week, its for an AIH flare. I came off immunosuppressants about 3 years ago and had been controlling everything with diet but a recent huge life change has caused immense stress and i believe caused the flare-up. I'll let you know how it goes. Wishing you all the best on your journey to optimal wellness!
Hi Sunshineocean!!! Thank you for sharing! It provides courage and hope to hear this non-conventional approach! Sorry for the life change contributing to the flare, but sounds like you going full steam ahead to get to a better place! Looking forward to your update! will pray for a good outcome! wishing you the best!
thanks so much, Stamatiki! I feel optimistic about the treatment 😌
Since my diagnosis in 2015 I have knocked my fibroscan score from Stage 2 (8.2)to the middle of Stage 0/1 (4.6) and my blood labs are well within normal. This took a long time. My first ALP in the normal range was in May 2019. I tried just a raw foods primarily plant diet first. Over those first six months of monthly testing my ALP climbed at a constant rate. Then I started Ursodiol. I can’t say I’ve continued the highly restrictive diet as before but here’s what has been consistent: 1) I drink a ton of filtered water with a wee bit of himalayan salt for the electrolytes and minerals; 2) I NEVER eat fast food or drink soda; 3) when I buy groceries I don’t buy anything that has added sugar, I look for things that have a high ratio of fiber to carbs, and I stick to organic and non-gmo. Mostly I don’t eat prepared foods at home; 4) I eat a lot more veggies; 5) I take 1000 mg Vitamin C and 200 Selenium morning and evening with mu Urso; 6) I avoid gluten like the plague, in all its forms … read up on guidelines for celiac disease. If I eat it by accident I get severe intestinal cramps and gas; 7) I walk every day and actively look for and create reasons to feel joy; The things I mentioned above will help any autoimmune disease and are anti-inflammatory; 8) I see PBC as a fun science experiment and not as something that defines me or controls me. Don’t take this to mean I’m marginalizing your fear. Fear is totally normal but it knocks down the immune system and not in a good way.
PBC is not treated by diet.
PBC can’t be “cured” by medicine, as we all know here. I take Ursodiol with the nutritional and lifestyle changes I’ve made. I do believe the dietary changes have reduced or eliminated periods of active disease attacking my bile ducts and the Vitamin C and Selenium may have helped my liver heal. The dietary changes make a huge impact on inflammation which could be helpful with AIH or other inflammatory (most autoimmune) disease. Before I made these changes I had brain fog, fatigue and constant joint pain. All of that went away. My skin cleared up. I sleep better and I can’t remember the last time I took Advil or any other pain reliever.
But diet is not a treatment for PBC, general healthy eating is advised. I'm talking only about PBC, not AIH, or other inflammatory autoimmune disease. It's great that your diet has helped you feel better, I'm not knocking that idea.
Kakey, please read the original post. The author seeks alternative options and specifically mentions PBC/AIH overlap. AIH is inflammatory and is often treated with steroids to reduce inflammation as well as immunosuppressants.
I respectfully disagree with your opinion of nutrition as "treatment." You are right that it is not part of the medical system's protocol. However, I consider it a key part of my personal treatment plan, which involved major lifestyle changes going far beyond my doctor's prescription pad. We can choose to take control of our actions to do the best we can in addressing our challenges. I made those changes after reading "The Autoimmune Solution" by Dr. Amy Myers at the recommendation of a doctor friend and doing her elimination diet, and then doing a lot more research and adding Vitamin C and Selenium as a result. In my experience, something is working as demonstrated by improvement in my fibroscan scores over time, as well as the disappearance of occasional brain fog and almost-constant joint pain that dogged me for several years before my diagnosis.
It is solidly proven that nutritional support, exercise, avoiding exposure to various toxic chemicals, and stress management can reduce inflammation, heal leaky gut, and prevent or reduce active episodes of autoimmunity where our bodies attack and damage our microscopic bile ducts. I have been told by my doctor that PBC can be active or in remission. Obviously, it's better if it is in remission and stays that way. Our doctors don't know what causes active episodes to start or stop. Urso is helpful in clearing out cholesterol from the bile ducts allowing bile to flow more freely, which prevents secondary damage to the liver caused by caustic bile not moving as it should. If, by using "alternative" means like eating the right foods, taking supplements that support my liver, and moving my body has the potential to reduce or eliminate the frequency of those active episodes, I will do that. The worst that will happen is my body will thank me for treating it right.
As I clearly stated, I'm talking about PBC, not AIH or other autoimmune diseases, PBC is different. And I am responding to you.
PBC is a progressive disease, that cannot be stopped, just slowed. You can go off piste with your thoughts and the way you live your life, that's absolutely your prerogative. I support your desire to do that.
Some of us progress more quickly than others. Those who progress quickly are not doing anything wrong, nor are those who are lucky enough to respond well to Urso doing anything better.
Kakey, please don't take my comments as an attack on other people's situations. They are certainly not intended that way. The author of this post asked about alternative treatments and I have seen some success with the alternative treatments I have been using, so I shared. I do believe there are things the medical establishment does not know and we may be able to do more by coloring outside the lines. You agree the progression can be "slowed." How? Perhaps some of these alternative things can help our author or someone else here, so I am sharing them.
Just to clarify, PBC is also autoimmune. In my experience (diagnosed stage 2/3 in 2003) PBC and it's progress Is not black and white and there are many unknowns. I want to clearly say that no one is better or worse because of either their choices or their body's response to medication, we all are just navigating this the best we can & I wish everyone to be well. My latest Fibroscans & Biopsy both show "little to no disease" I asked my Dr who is at Mass General and an incredible physician how it is possible that the histology if my liver has improved. He told me we did not think that was possible when you where diagnosed, but over time we have learned that it can happen. I too do many of the things described by Michi1... Eat very clean, organic, no gluten no sugar lots of fish and veggies. I take some supememts, lift weights, pilates, walk etc. I also do intermittent fasting (usually 48hrs) take Ursodiol, Budesonide and Methotrexate (very small dose at this point) and work hard to reduce stress as much as is possible. Everything I try to do is to reduce any inflammation in my body. I think there is still so much the medical community doesn't know, but I do believe that for some in addition to the medications prescribed by our Dr's lifestyle choices can directly impact our outcomes with this disease. Also, the lifestyle choices can make us overall healthier and maybe able to handle some of the PBC issues better. Best to all!
Thank you for chiming in here! I'd love to know more about the specifics of what you're doing and what you think is has helped you the most. I've been avoiding gluten and eating a high greens vegan diet with added omega 3s in the form of 1/2 c. flax seeds in my daily smoothie (per Goodbye Autoimmine Disease, Brooke Goldner) and GI/liver supplements. I'm still experiencing a lot of joint pain, dizziness (from the Urso?), brain fog and fatigue. I'm also reading When the Body Says No by Gabor Mate. It makes sense that the perception of stress has a role in autoimmune conditions.
Sanov, it sounds like you've been doing a lot. Did you stop the gluten after an elimination diet? I had eaten bread and pasta all my life without problem but after cutting out gluten for two months I had brutal intestinal cramping and gas within a half hour when I reintroduced it. I have also experienced tingling in my mouth and throat after eating processed foods with wheat as an additive. Soy sauce is the worst for me. I haven't cut out dairy but it's not part of my everyday diet. When I have cheese if there's a choice I get sheep or goat cheese to avoid the casein, which Dr. Myers says acts in the body a lot like gluten.
Probably the most significant change I made was significantly increasing my water intake (and at the advice of a naturopath friend NEVER drinking tap water). When I was younger I lived on Diet Coke and coffee. It's a marvel my body survived it! I have a Berkey Filter that pulls out all the chemicals including flouride and chlorine. The other big change was to eat a lot more raw fruits and vegetables, and a wider variety of veggies in general. I eat lots of greens now: swiss chard, collards, spinach, kale. I've grown to love green smoothies with lemon and ginger, an apple or banana, and some protein powder and flax meal. It's a go-to for lunch or dinner if I don't feel like preparing something more complicated, and it's like I can feel my cells rejoice when I drink them! My breakfasts have changed a lot, too. I eat a lot of eggs with avocado, or steel cut oats, or sometimes I make homemade arepas with eggs and/or black beans and sometimes a veggie like spinach or asparagus. Arepas make a great alternative to muffins or croissants if you like the occasional breakfast sandwich and can't eat gluten. You just use corn flour and water, and they take about a half hour to make.
There seems to be disagreement among the holistic health types about whether it's better to go mostly raw food or have cooked veggies. Raw foods have digestive enzymes, cooked foods are gentler on your system. I haven't gone the vegan route, although I eat a lot less meat than I used to. Bone broth is supposed to be very healing for the gut and every few weeks I like to roast a whole chicken and then make soup with the bones. I pretty much don't touch meat at home that's not pasture-raised grass fed and antibiotic free. It's expensive but I don't eat it as much and it's just me so I go for it. I can get a lot of meals out of one chicken or a pound of ground turkey or buffalo meat. Once in a while I have shrimp or scallops, or a salmon filet. I'm not that big on fish but do make a point of eating it sometimes. To keep the cost of organic veggies down I use Hungry Harvest and am growing some things at home. That's a whole crazy thing living in an urban high rise. I'd starve if I had to rely on my indoor garden!
Finally, I did a lot of work on personal development to shift my mindset and reduce stress. In a nutshell, I'd say the most impactful things have been to remember to breathe, to actively be in the moment as often as I can, to not try to control things I can't control, and to focus on the positive. I make a point of noticing the pretty shiny things that make me smile or the smell of lavender or whatever feels good in the moment. I get up and move when my body is sick of sitting and take a lot of hot baths because they relax me and make me feel good. That is the OPPOSITE of who I was in the past. I used to be incredibly negative and pessimistic. It took a lot of work to get from there to where I am now. In traditional Chinese medicine, they say that suppressed anger can express itself in the liver. I was Type A, workaholic, and had learned to suppress anger so efficiently I didn't even know how to feel it anymore.
For me the joint pain went away when I figured out what for me are inflammatory foods. When I eat those things, which inevitably happens sometimes by accident and sometimes because I stupidly think I can get away with it just this one time, joint pain comes like a giant warning sign. The worst of the brain fog was about 5 years before I was diagnosed with PBC. Mostly I would lose my keys a lot or I'd get up and walk into another room to get something and then not remember what it was I was there for, but once I had no recollection of an entire phone conversation for which I found two pages of notes! I haven't experienced brain fog in a long time. I've never experienced dizziness or heard of it as an Urso side effect. You might want to ask your hepatologist about that. Fatigue, though, is a thing for me here and there. Sometimes I feel a bit wiped out in the mid-afternoon. If it's bad I take a nap. It's never been a life changing thing and I have the great fortune to be self employed and work from home.
I hope this helps. Feel free to message me if you have any questions.
Thanks for all that!! I stopped gluten after being told to by my functional medicine doctor bc it's implicated in autoimmune conditions (I have psoriasis as well as the AIH and PBC). I never had gut issues with it, but the science makes good sense to me. I know I need to drink more water. It's a daily struggle! I have a berkey, too, so there's no excuse, lol
Green smoothies are my insurance plan to get in enough raw leafy greens and I feel my cells rejoicing when I drink it, too I try to drink wheat grass as well. And thanks for the idea of making Arepas... I'm going to look up a recipe now bc I miss wheat bread and the gf types aren't very satisfying to me.
I hear you about changing your mindset. Im really working on letting go of the need to control things as well as taking the time to feel my emotions! I, too, was a workaholic as well as really good at not feeling anger... as if I was more evolved for that.... haha! I have been really focused in my mind and not so much in my body, so my goal now is having a kinder, more cooperative relationship between my body-mind. I read in the Urso pharmacy printout that dizziness is a side effect, but when I mention it to doctors, it's kind of gets side-stepped. It hasn't gotten much better so I'll be more proactive in getting it addressed. Brain fog is somewhat persistent, too... reducing stress/perceived stress hopefully will help
So, are you in remission now? Have you changed your dosage of Urso because of this?
I’m not sure how you can tell if you’re in remission. As long as the labs and fibroscan are good I just keep doing what I’m doing.
In the past I cut mu urso in half and my labs shot up. My doctor told me it doesn’t really work if you’re not on the dosage for your weight. This January I did a nutritional cleanse and drank tart cherry juice twice a day to prepare for the liver/gallbladder part of the cleanse. Cherry juice and apples have malic acid which it seems act somewhat like urso in moving the bile. I had labs run after the cleanse and my ALP was at the bottom of the normal range. After the cleanse I stopped the cherry juice and my ALP went up to the pre-cleanse level. I’m going to ask my hepatologist about that when I see her Monday.
Oooh, that's hopeful! How much cherry juice + apples were you drinking?
The cleanse was in phases. It was suggested that because of my PBC I should drink the cherry juice the entire time until the liver/gallbladder cleanse. I used 1tbsp of this concentrate every morning when I got up and every evening at bedtime with about a cup of water.
Then, for 3 days before the liver cleanse I drank a quart of blended apples a day. See the second reply for the instructions I followed.
The apple part.
Thanks!! Did you do the epsom salt/olive oil type liver cleanse? I'd done a series prior to my diagnosis and I've been wondering if that was helpful in my condition or not?
I did! I released very few stones (I’m guessing Urso is responsible for that). No idea if the liver/gallbladder cleanse was responsible in any way for the improved labs or the 1.9 point drop in my fibroscan score. The fibroscans had dropped each time and I hadn’t had one since spring of 2019 due to Covid. The current score is consistent with it just continuing to drop over time so who knows?
That's awesome!! I did about 8 cleanses... every 6 weeks until no stones in two consecutive cleanses, but that was about a year before my diagnosis. My fibroscan was 16.5, but strangely my biopsy in February showed no fibrosis and the drs. go with the biopsy results over the scan. I'm guessing I'll have another fibroscan soon.
A lab tech told me the fibroscan could be affected by inflammation. Where are you located?
Yep! I was told that, too. I'm in Washington state (Whidbey Island)
Thank you so much for all the info!!! I am new to this diagnosis and very like minded. Was concerned that I wouldn't find info from a similar perspective! Not sure where to start and feeling overwhelmed. I have started by cleaning up my diet and i also began intermittent fasting. I feel good. I was having all sort of symptoms. They seem to have disappeared. Any thoughts about intermittent fasting? I haven't been to a gastro doctor as of yet. I am looking for someone with an open mind and willing to use some out of the box thinking! Everything you have shared has given me restored hope! Thank you again!!
You are an inspiration! Can you give a typical day of eating for me.Thanks
Carol I’d be happy to talk you through it. Just Message me your number. Mostly I do the things outlined above.
Thank you for your post. Both my Hep and my naturopath would say that diet is definitely a treatment for PBC. What I have discovered is that a lot of people really want to believe that diet doesn't make a lot of difference due to wanting to have some things in life they still really enjoy. Everyone's body is different. Learning to listen to what it's telling you is so important. There are many, many people who have PBC and have managed for it to not to have progressed. I'm sure they have all done that different ways. I am so glad you have found what works for you.
I'd love to know what diet(s) does your naturopath and hepatologist recommend?
They haven't done it different ways. That's what PBC is like, it's unpredictable and affects us all differently. People whose PBC have progressed have done nothing wrong. People whose PBC hasn't progressed have responded well to Urso, and may be lucky that their PBC is moving slowly.
I believe some people need to feel like they have some control, it's frightening to be at the mercy of PBC, and diet is a classic way to try to control our bodies. Lifestyle is not a factor in how PBC progresses, a general healthy diet is advised. If someone has celiac disease they must give up gluten, if someone has digestive problems giving up gluten may help them. But that does not make them treatments for PBC. I don't dispute at all that diet is a factor in how we feel, and how we are.
This is why I don't usually post. I don't need anyone disagreeing with my own health care providers that diet is a treatment. I wish you well and at the same time I don't need to be told that I am wrong. Alternative medicine and ideas saved my life. Literally. I happen to have a hep who believes in alternative/complimentary medicine and that diet DOES affect progression. I said what I knew to be true in my own life with my own providers. Not sure why you feel. compelled to call me out directly. I am not asking you to do anything. I shared my own experience. My experience does not conform to yours. Everyone is different which I pointed out in my prior post. I am leaving the boards because I do know that stress is not good. Those of you who asked about anti-inflammatory diets, it's an easy find on the internet and there are many, many books on the subject. I also had great success doing a 60 day juice cleanse after watching "Fat, Sick, and nearly dead". It was the best I had felt in years. I have done it twice for 60 days and do a 10 day juice cleanse when my body starts to feel run down. It was written into my treatment plan by a doctor.
I want you to know that I appreciate your input and do believe that diet plays a significant role in health .... how could it not? There are so many antiinflammatory diets out there, so I'd love to know what your integrative hep suggests. I think I may be due for a juice cleanse, too
I apologise for offending you. A difference of opinion is not that serious to me, I had no idea I was doing anything wrong.
Your juice cleanse sounds amazing!
Good Morning...I wasn't going to reply but the "disease of tongue" took over my control. I have had PBC and Medication Induce Liver Injury since 1997. I refused to use URSO as the amount of fillers in it seemed to me that it was an overload for the already stressed liver to process. I became vegan, went raw, added nutrients and healthy proteins. Always been a clean water advocate and drink throughout the day. I get really bothered when the
"NAY SAYERS" come on and basically begin to argue with what is working for us in out lives.
I too have had great success with a plant based diet keeping my PBC at bay. Early on in my journey, I completed Dr. Schultz 30 day incurable disease cleanse...Felt absolutely amazing.
Since then I have done several cleanses. My fibroscan and elastogram show very little damage. So, if PBC progresses regardless of what we do, then I'm confused as to why I'm doing so well. There are massive amounts of research regarding inflammatory foods and how they effect our bodies. I was having some difficulty with gastrocolic reflex recently, so I went back to my hepatologist. He felt that bile in the duodenum was causing the issue and insisted that I go on URSO! Well, that wasn't going to happen, so I researched TUDCA. Like magic, no more gastrocolic reflex and my numbers are dropping like crazy.
Bottom line, it's no ones business other than ours to live our lives the way we see fit to do.
I usually post/reply on private chat just to avoid the overly opinionated idiots I encounter.
Keep looking for alternative methods to make YOUR life comfortable....Be WELL
But no one is knocking your diet or anyone else's. It seems to me that we all agree that a healthy diet is a good thing. But I wouldn't call people who disagree with me idiots, I wouldn't be that rude.
Hi...One thing I really do not like is how through writing, we as humans seem to interpret things the way we want. That is not always the way the written words were intended. I received a partial email from you, but it looks like you may have deleted it, as it is not on the forum. No one here wants to argue and fight. We all have options and strong opinions about what works and doesn't. It is apparent to me that you have strong belief and faith in the Medical sector of the world. I see you were diagnosed about 2 years ago and you are on URSO. I hope that works for you. Some people cannot take it, and for others they are non responders. As you can see, there are many on this forum that feel there are other approaches, and have had great success with dietary changes. It is my belief that the push backs on your input were partially due to your being adamant in your stance. This is why most people either use private chat or stay away from responding. The original part of the thread was someone asking for alternative ideas. I do not know your personal background/education, but it appears that your research on PBC may be slightly limited to main stream medicine. I was not being rude to you as my post was not directly focused on you.It was intended towards all the people on forum to refuse to look outside of allopathic medicine. Be well
Let's be clear, I didn't send you an email or any kind of personal message. I deleted a post that was pointing out inaccuracies and inconsistencies, as I changed my mind. I did not threaten you or anyone. I have not made personal, insulting statements.
That being said, you are right, you know nothing much about me. But I was misdiagnosed for 4 years, was very worried about my health, gave my lifestyle a complete overhaul, healthy as I could possibly be. But my bloods kept rising. I was eventually given a biopsy, which showed PBC and fibrosis. I know that diet did not help me in any way, but with Urso my bloods are normal, ALP only slightly above normal. Hep very happy with my results. I disagree with the feeling that diet is a treatment for PBC, science and my own experience inform my views. I have not in anyway maligned anyone's diet, but I have a realistic view about the scope and capabilities of diet.
That is obviously an anecdote, my personal experience is not a model for PBC treatment, nor is anyone else's.
ETA I realise that Urso response is a privilege, and I have every sympathy for non-responders, or those who cannot take Urso.
Happy you are doing well....I mistakenly used the word email instead of Forum post. I saw a partial reply on my phone in my email. As per you above statement of pointing out inaccuracies and inconsistencies...I'm glad you decided to delete that post. No one wants to be picked apart and judged. If you were personally offended, I apologize. We are not on trial here...just sharing experiences. Be well
Thanks for your input! Would you direct me to any information you have regarding the fillers in Urso that informed your decision about it? I'd love to learn more And TUDCA stands for? I want to treat the underlying cause of my PBC and AIH so I won't need to treat the symptoms
Your right...ignorant would have been a better choice of words. Thanks for your opinion
You know the way you said "my numbers are dropping like crazy" when you started to take your Urso alternative, did that not make you question yourself? The medicine changes your numbers, you said it yourself. If your diet did it, you wouldn't have needed the medication, and the effect wouldn't have been so marked.
If Urso is ineffective another med is added. If none of the meds work transplant is the next possible treatment. At no stage is diet used as treatment.
I'm sure your diet is beneficial for your health and is doing you lots of good.
Being rude to me again won't get you anywhere.
If you re read my original message, you would see the only thing I was able to do was diet. I never took urso and only started Tudca about 3 months ago. What I did say was my fibro scan and elastograph showed little damage. That too was before Urdo.
I seems to me that you are looking to prove yourself right. This forum is to share, not be challenged by those "deep inside the
box. " please refrain from throwing idle threats around. My comments were not directed to you....believe it or not, there are many nay sayers on thos forum.
URSO
Inactive IngredientsIngredient Name Strength
MICROCRYSTALLINE CELLULOSE
POVIDONE K30
Polyethylene glycol 3350
Magnesium stearate
HYPROMELLOSE, UNSPECIFIED
ETHYLCELLULOSE, UNSPECIFIED
Dibutyl sebacate
Polyethylene glycol 8000
Carnauba wax
sodium starch glycolate type a potato
TUDCA
Tauroursodeoxycholic Acid
I use the brand Double Wood. 500mg/1 capsule 2x's daily. It's bile salt
Thank you... I'd never heard of TUDCA before! Did your hep doctor recommend TUDCA after you learned about the fillers in Urso? And did s/he replace the same mg ursodiol with Tauroursodeoxycholic Acid? Could you direct me to any good studies comparing the efficacy of Urso and TUDCA? I've found a few articles, but don't want to reinvent the wheel
Mt husband tried the URSO and didn't feel well. He immediately switched to the TUDCA and it has been great. I found a study on pubmed or NIH that show TUDCA was very effective. I don't think they abbreviate it, so type out the full, impossible to spell : ) name and you should find it. The study showed it worked and it definitely worked for my husband. He was itching so terribly and he has no more itching.
My doctor did not recommend TUDCA. I researched natural alternatives and it cane up with several studies. Then I found an article about dosing by weight. I'm about 120-125. Give me a couple of days and I'll see if I can find them again
Thanks!!
My pleasure
shiftfrequency.com/insight-... with this article. If you google PBC and TUDCA, you will find lots of supporting articles
Thank you!!!
Sure...hope you find the answers you are looking for
Tell us more about it I would love to know so I can ask my doctor I refuse to take prednisone and Urso I'm on the 6MP for the AIH I would love to know more about what you talking about
Good Morning....I started looking for alternatives after I read the ingredients and side effects of URSO. I went years with doing nothing but diet. My liver is in great shape, but my numbers are high. anyway, after reading and searching for alternatives, I came across TUDCA. The first time I tried it I was not taking an effective dose and wasn't diligent in taking it, hence, really no difference in anything. I began having gastric issues related to bile in the duodenum. Gastrocolic reflex is horrible. I started more research on TUDCA after my doctor insisted I had to take URSO. I found the above posted article and then found more and more research on it. The part that attracted me is that it is bile acid with no fillers, so no drastic side effects for me. I am 120-125 lbs and take 1 -500 mg capsule in the morning and 1 -500 mg capsule at night. Start researching PBC and TUDCA. There are many articles of it's efficacy. Be well
Thank you for taking the time to explain I really appreciate it
Hi Sanov and others, just responding to see if anyone has updates. I have AIH and PBC and have tried a little bit of everything. I don't read all posts, but this one caught my attention. if anyone is willing to share how they are doing i would appreciate it. I really commend those who take control over their diet and lifestyle as opposed to wallowing in ones own sorrow or not doing as much as you can to have the best quality of life. I say to each his/her own in terms of how we manage/treat these rare diseases, but sharing information could be extremely powerful for everyone. 🤗
It's now a year after I started taking only URSO, eliminated gluten and eating a high veg vegan diet. I also was diagnosed with Primary Sclerosing Cholangistis a few months ago through an MRI:/ It seems having three overlapping AI liver issues is super rare and doesn't have a very good prognosis:/
I did a 14 day fast at True North Heath Center in April and will be doing a three week IV alpha lipoic acid protocol with Dr. Berkson in early June along with the vegan gluten free, high green diet. Although, i just returned from a trip in France and got off track a bit with eating some sugar/butter/cheese .... no wine though
My numbers are staying in the normal range, as of 2 months ago, except for when I was fasting and off the URSO.
I've been reading more about how solvents and environmental toxins can trigger the genetic expression of AI liver. I'm hoping the ALA treatments will help remove much of these as well as undo the oxidative stress.
I'd love to hear about how others are doing with complementary treatments, too
that is fantastic that your numbers are normal. I appreciate you keeping everyone updated. I have thought about making a trip to New Mexico. I would love to hear how your three week IV treatment goes..
Thanks! I'm sure you'll do great. i will be curious to find out how they measure the results as being successful or not. It's wonderful to know labs are normal, but understanding if you can reverse any of the damage that has already occurred. I am late stage 3/early stage 4, i think the progression was due primarily to a late diagnosis on the AIH.
So, do you have many symptoms/take immunosuppressants with your stage of AIH? Mine was diagnosed through biopsy along with the PBC, so fortunately, everything was found at early stages.
I have heard that in addition to symptoms lessening, labs and imaging looking good with less or no medication, some people's ANA (antibodies) completely go away with alternative treatments, such as the ALA therapy.... a complete cure. Wouldn't that be wonderful!!
Wow that is huge. I was diagnosed with PBC in 2010 with biopsy and lab results and then in 2018 with AIH. Same thing it was a biopsy. The only imaging I’m doing right now are ultrasounds every six months to make sure there aren’t tumors in my liver. I really need to lessen my medication. I finally got off my steroids for the AIH one year ago but I was on them for three years. I am still on 100 mg of immune suppressant. I get sick all the time and I’m starting to develop a lot of squamous cell carcinoma’s and warts that need to be burned off. Half the time the burns lead to infections and I end up on antibiotics for that or for some bacterial infection I catch. I feel like I’m on antibiotics all the time which is counter to what my gut needs. I have been focusing as much as I can on the eastern medicine outside of taking the medication. I am required to take buy my hepatologist. I have a lot of responsibility at home, including children and elderly parents. That is why I’m so curious to see how you do. I know everybody will respond differently. But if the outcome is good, it may be worth me just making it happen to make it down there. Thanks so much for being transparent. And once again, good luck I can’t wait to see how it goes.
My husband has been getting the ALA IV treatments and taking ALA orally as well, in addition to many other supplements. We started a few months ago. We did a blood draw yesterday so in a few days we will know if his numbers are moving in the right direction.
How were his numbers? How was the ala iv therapy?
Hi Buhler,
GGT 945 dropped to 471 Normal = 5-40
ALP 840 dropped to 558 Normal = 44-121
AST 144 dropped to 88 Normal = 0-40
ALT 148 dropped to 88 Normal = 0-44
The numbers are still high but we are happy to see progress moving in the right direction and the itching stopped almost immediately! The itching was his worst symptom and it is now a think of the past. Praise God!
where is he getting his treatments? I just finished 2.5 weeks at Dr Burkson's clinic in las cruces, NM.
How were the IV treatments at the clinic and what results did you see on your tests?
itch and bilirubin, long covid
Symptoms are back with a vengeance!
Curious about PBC symptoms and LFTs at Diagnosis
Second opinion?
New to the group but not PBC
