So maybe 3 to 4 weeks ago, I had posted a question asking if anyone had used Dr Burt Berksons therapy for PBC. Dr Berkson has worked with Dr Julian Whitaker. My dr here has worked w/Dr Whitaker. My dr confirmed that Dr Berkson has had positive results using r-alpha lipoic acids/selenium/& high dose milk thistle for PBC. I've been on this regimen for almost 4 weeks now.
I'm happy to report that my itching is gone, my enzymes are dropping, & im feeling much better.
I've also switched from generic Ursodiol to brand Actigall. I'm only taking 600mg of the prescribed 900mg daily dose. (Which I will keep at the lower dose as long as things look good)
I absolutely think getting insurance to pay for brand (if you can) is worth it. The generic gave me horrible bloating. That was gone within a day of taking the brand.
My Dr is thrilled that I was able to reduce the dose to 600mg.
I know Dr Berksons protocol doesn't work for all, but it's helping me quite a bit. Since I also have lupus & breast cancer, I've also gone to a much healthier diet & daily walking. I've also introduced iodine drops & that's only added to how good I feel. Within a week of starting iodine drops, I've lost 4 pounds.
(My Dr has long believed I'm iodine deficienct....as majority of the population is)
I wanted to share good news to this group, & even though I know it can change with this disease, it's a beautiful thing right now & I'll take it!
For me, dealing with 3 major illnesses, I had to find other alternatives to conventional straightforward western medicine. I will always be 100% on board with conventional medicine. However, if I can find something that agrees with my body & helps, I'm going for it!
Take care all!
Jules
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Caseymayr1102
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I'm so thrilled for you!! Yes, I believe I posted on your thread about Dr. Berksons protocol. You have to do what works for you. ❤ You have quite a bit on your plate. Here's praying things keep going well!! 👍❤
I worked up my dose of R-Alpha Lipoic Acid from 200mg for a few days, to 400mg for a few days, & finally 600mg. Not sure where your located, but I use Drs Best R-Alpha Lipoic Acid. It's effective & inexpensive. It's found on Amazon. You must use the R form & not just Alpha Lipoic Acid. The R form is stabilized & more effective.
Next up is Selenium at 200mg daily. If your in the United Stated (I can't recall if you are) there's a wonderful company called Global Healing Center. It's Dr run & the Selenium they use is natural made from mustard seed. So it's not a chemically produced Selenium.
Finally, Milk Thistle is 900mg daily.
One thing to note. When taking R-Alpha Lipoic Acid, you must take a B complex vitamin. It works well with it.
I'm feeling good right now & happy with my results. Always here if you have other questions!
That's wonderful! How long have you been doing it?
When I go back to my Dr, I'm going to bring up the IV infusion of it. I had heard it's difficult to get for the Drs, but have no idea if that's correct.
I also take the B12 & Vitamin D. Plus, my hepatologist wants me taking Vit A & E. There's other things I take as well, but they're more for my breast cancer & lupus.
Thank you for replying! I hope your doing well. I'm thinking of going to see Dr Berkson as well!
In order to to get hooked up with IV Infusions, you have to find Integrative Physicain , and have him follow Burt’s protocol: Alpha Lipoic Acid can be tricky, have to find good Integrative MD.
Western MD will never tell you the alternative way and will never use Compound Pharmacy, they can’t according to Hospital rules.
Oh by the way, I also take Cucurplex95 (Integrative MD has to carry it, and only buy from him, and I also take Low dose Naltrexone (LDN) 3mg @ bedtime.
Burt only uses A few brand name Supplements 1) Metabolic Maintaince (2) the Big One Multi (3) Bio-Tech. The reason he only uses these brand names is because, Burt personally went into manufacture to make sure they are pure, no fillers.
Thank you for such good info! You've been very helpful & I wish you all the best! Conventional medicine isn't the end all be all, despite what many believe. I'm glad you also discovered this amazing protocol.
I also have low dose naltrexone. I'm on hold with that until I no longer need pain meds for cancer treatment. Once able, I'm starting it. The other supplements you mentioned, I was unaware of.
I almost currently RN (MSN), Western medicine is a temporary bandaids, never get down to root of problems. BIG PHARM will never allow natural Medicine in USA. Too much money involved and GREED!!!!
Couldn't agree with you more. That's become crystal clear to me over the years. What's sealed it for me is going through cancer treatment. Not one natural supplement to fight cancer stem cells has been suggested. Not even the basic Vitamin C which is a well known fighter of breast cancer. When I question any part of treatment not related to their regular format, I'm looked at like I have 3 heads. It's all about the money.
Good afternoon, so happy to hear you feel better, wahooo!!! I Would like to mention a couple things that may help you.
1) Alkaline water suffocates Ca Cell’s 2) Vit. C also suffocates Ca Cell’s. I drink Alkaline water everyday, you can buy in SuperMarket or make your own (glass water 08oz to 16oz add 1/2 teaspoon baking sofa mix up good, no taste, keep cold). I buy alkaline water in the Market 99% of the time. I just bought six pack of Saka A/water, there are plenty of other brand names also.
By the way, There is a physician up in Famouth Maine, his name is Dr Dustin Sulak (he a Osteopathic MD), I may make appointment to see him, for proper cannabis dosing. Cannabis is the Sacred Plant, 100’s medicinal cures. I don’t smoke and I don’t like the euphoric high, but there’s away to avoid any high feelings, CBD is it, use CBD before using cannabis. I use the oil, I only use a size of a grain of rice, I mix it with warm peanut and put on couple crackers before bed ( only use about 1/2 to 3/4 teaspoon of peanut butter).
If you have a change read about the sacred plant and Dr. Sulak. Dr Sulak is renowned Cannabis expert, also read about Rick Simpson, he supplied me with his oil 3 years ago. Rick Simpson is a wonderful man and his wife is lovely. If you don’t already know about Rick then you should read. Very, very interesting.
Lots of useful info. I'm using the cbd oil but have wondered what IS exactly the proper dose. Many supplements I buy are from global healing. It's a dr run company based on Texas & everything is organic & vegan friendly. They have very high quality supplements at reasonable pricing. Their site is also a wealth of valuable info.
Just started using alkaline water & im searching to find any brand of water not made in plastic. Not having much luck.
I really appreciate all your helpful insights and recommendations!
Thank you for posting about the B complex. I have a good B12 in liquid form I purchased from global healing, but had yet to find a good choice for b complex.
Currently I’m currently in Massachusetts, but will be arriving back in Florida in a few weeks, then head to Las Cruses New Mexico to visit with Dr Burt Burkston MD.
Dr Burkston wrote a few books 1) Honest Medicine, 2) Alpha Lipoic Acid, and 1or 2 others, I think. Both of these books a fabulous, very easy read. I believe he wrote out a protocol of supplements. If you fine the time order through Amazon. Worth the read.
Hi Caseymayr1102, I was wondering, what dose of the vitamin b complex are you taking? Do you take it at the same time as the R-Alpha Lipoic Acid? or do you space it out or which do you take first?
Hi Caseymary1102, I'm just curious how you are doing on the Dr. Bersons Protocol. I have heard about him in the "Curing Courtney" book but that was for Hep C if I'm not mistaken. Does he have any confirmed luck with PBC patients? I still believe this is a virus we have and we just need a proper antibiotic with excellent pro and prebiotics. Anyways, looking forward to hearing from you.
I'm doing pretty well on his protocol. I still take a partial dose of my Actigall, but have never taken the full prescribed dose. My levels continue to drop & my itching has ceased. I'm dealing w/other health issues as well, so my alk phos does rise & fall from time to time. However, my ALT, AST, & GGT continue to drop. All are within single digits of normal ranges again.
I also take good probiotics. Ive lost quite a bit of faith in traditional medicine over the years. While it's good to have as a back up, my focus is whole body healing.
SunnyXXOO has actually gone to see Dr Berkson in New Mexico. The best thing to do is find an integrative physician. They blend natural & western medicine. They are open to treating w/unconventional methods.
My situation is much more complicated. I'm treating breast cancer, a thyroid mass, lupus complications, & PBC.
So it's been an exhausting ordeal. Having someone who can look at the whole picture is key.
Thanks for your response. I'm sorry to hear you have so much going on. WOW! That really sucks! Are you also doing chemo? Also I am curious how long you had the itching? That is my biggest issue right now. I did not have it for 4 years after being diagnosed , then BAM! Out of nowhere I am cursed with it. How were you able to figure out what Berkson prescribes without seeing him? I too am disgusted and beside myself with these western medicine doctors. I just started CBD oil quite honestly. I don't know who to trust anymore.
I did research on Dr Berkson after looking up natural ways to treat PBC. I also discovered a book he wrote on R-alpha lipoic acid. That led me to hear him speak on a radio show. I also watched some YouTube videos of him speaking. I'm lucky to have found 2 integrative Drs near me & both take my insurance. I brought up Dr Berkson's protocol & my dr stepped me through it. Your average Dr won't have a clue what his protocol is. I brought it up to the liver dr & she looked at me like I have 3 heads.
Dr Berkson also uses low dose naltrexone. My dr here prescribed it & it had to be filled at a compound pharmacy. I've changed many things re diet, meditating, walking, acupuncture, & supplements. I'm so fed up with traditional medicine. I wish all Drs would be open to mixing traditional medicine with non conventional. I think we'd all be much healthier if they did. The PBC was the most recent thing I am dealing with. Both the breast cancer & PBC (both within months of each other this year) were a slap in the face to make me realize I needed to focus on whole body healing.
So your dealing with itching now when you didn't before? Has something changed w/your labs? Are you on meds for your PBC?
It's always nice to talk to others who are looking for more than what western medicine tells us. I believe there has to be a balance of both.
My labs actually got better and itch started! My alk phos was in 500's at one time and now in low 200's. I am on urso, 3x a day and now very recently, self prescribed CBD oil. I think the CBD oil is helping with the itch quite honestly. I would love if you found the link to Dr. Berskson show you found. I will try anything to rid myself of this illness at this point. I'm in Illinois, about 45 minutes from WI/IL border! By the way, my Dr's always look at me like I have 3 heads! hahaha!! They just don't have a clue!
I'd love to be able to go see Dr Berkson, & hopefully can do that some day. It's so frustrating that there's someone who can help, is a medical Dr, & yet the majority of liver specialists know nothing about him.
If you go on YouTube & search Dr Burt Berkson , you'll get all of the videos regarding him & what he does. I just double checked that searching under his name brings it up, & it definitely does. You'll find many helpful videos!
Also, just by googling his name you'll get info to explore. The YouTube videos were very helpful.
Your not that far from me. I'm only about an hour from the Illinois/Wisconsin border! Small world isn't it?
Keep me posted. This wretched disease is cruel & it floors me how the only thing western medicine focuses on his pharmaceutical pills to treat it. Pills that really aren't always effective either. There's better options & answers out there.
Reading your posts have helped me do much. I feel a bit calmer now.
Are you in Texas? I’m in Indiana. I need to search for an integrative physician to help me.
May I ask the name of the probiotics are you taking? My doctors office just tells me to buy a brand name. I’m going to ask my NP to give me a prescription for the Actigall instead of the Urso. Hopefully she will and insurance will cover it. I pay a large insurance premium monthly.
I'm in Wisconsin. So if I can find an integrative dr here, I'm sure you can find one in Indiana.
I'm taking Florajen digestion. I take 4 daily & also take a digestive enzyme before meals. The enzyme is from Vitamin Shoppe & is their brand. If you have any questions about the protocol please feel free to just ask me. Make sure you buy the R-alpha lipoic acid & not just alpha lipoic acid. The R form is stabilized & more effective. I use the Drs Best, sold on Amazon. His protocol is the following;
R-alpha lipoic acid 600mg daily
Selenium 200mg daily
Milk thistle 900mg daily
B complex Vitamin
(I also take some other supplements)
Western medicine is not the end all be all. I've learned that in dealing with what I have. Stress is the enemy & I'm learning to be more calm as well.
Just tell your NP you'd like the brand not generic. If you have to, tell her your not tolerating the generic. Your insurance should cover it if the Dr lists it as a no substitute (or issues w/generic) For me it was night & day difference between the two.
I'm so glad I could help you. Please do not hesitate to reach out.
I’ve not heard of Florajen digestion. I’ve seen ads for Florastor. I’ll see what I can find on Florajen. I’ll probably just add these supplements one at a time.
I go back to the NP in October and I’ll definitely ask for Actigall.
My main issue is with fatigue. I do have a tremendous amount of stress. Trying to figure out a way to do all the things I need to be doing...I have several people that depend on me and I have no help. They do not understand my fatigue so they just ignore it. Things are going to have to change. I can’t continue like this. I worry that I’m harming myself by pushing myself to do more than I’m really up to doing.
I take half of a 10mg Paxil daily. It’s a very small dose but it does help me. I also go to counseling every 3 months. It helps to vent.
You can find Florajen in any pharmacy. They keep it behind the counter in the fridge. You don't need a script for it either. I find Walmart pharmacy is the cheapest. They always have $2 coupons in the boxes to use for next time. It's super reasonably priced at around $12 w/coupon.
I'm sorry to hear no one understands your fatigue. I can relate to being fatigued. I do agree you need to take care of yourself & that can be hard when others rely on you. Maybe you'll just have to do it even if they don't understand.
Just read your post and hopefully you have better luck than me with Actigall. My insurance will not cover it. The price was somewhere around a thousand a month! This is Blue Cross/Blue Shield. Let me know how it goes for you! Good luck!
Anthem Blue Cross/Blue Shield is what I have. Very high monthly premium. I’ll be talking to my NP in October and I’ll let you know what happens. Hopefully she can figure out a way to get it covered. My itch isn’t too bad but the fatigue is awful.
I too have a very high monthly premium and my deductible for the year is 3k! I hate our healthcare! I agree the fatigue is awful! I could sleep all day if my life allowed it. My itch starts late afternoon around 4 and goes on until about 3 or 4 am! So depressed with this illness. There HAS to be a cure and they're missing it!
It’s definitely life-changing. And I’m not used to it yet.
I’m not necessarily sleepy...just so tired. And I don’t always sleep well at night.
I’m just now starting to look for other ways to help this. I’m going to start with the Actigall.
I’m from a small town in southern Indiana and I’ve not seen anything on support groups in the area. I asked my NP about it and she said she would check and let me know. I’ve heard nothing.
If the itch is really bad and keeping me awake I will take a Benadryl. That always helps me. I don’t do it too often though.
Schulsey is from IN too. I have spoken to her on the phone and she is doing quite well with Ocaliva now. I don't know why she is not on here often anymore, but message her. She has a great team I believe in Indianapolis if I'm not mistaken.
I’ve messaged Schulsey on here but it’s been a long time. She told me about going to Indy. I will message her again and see how she’s doing. Maybe we can get together and organize an event for this area. Thank you!
I have Anthem/Blue Cross Blue Shield as well. I also have a very high deductible. Prescriptions are only covered @40% until I meet $2500. Medical is nothing until $750 & then it's 80% coverage until $6500. So I definitely feel your frustration. I met all my deductibles this year due to breast cancer. I'll be paying this off for quite awhile. Then next year I start all over. 😩
They did agree to cover Actigall for me. My dr just told them I couldn't tolerate generic. I hope you can get them to do the same for you.
Our healthcare (being fueled/funded by pharmaceutical companies) is severely lacking.
Thank you! I’m trying to lose some weight and hoping my October appointment will help me get a better handle on everything.
My insurance premium is nearly $1800 a month. You would think that they would cover the Actigall.
I don’t know how I would have managed with this illness if I hadn’t found the PBC Foundation and everyone on here. Sometimes late at night when I can’t sleep I get on here and read the posts. It always seems to calm me down and I’m so thankful for that. 💕
I know you gave me your email, but I haven't had a chance to message you. I plan on doing so soon. I'm completely fed up w/my "team" of Drs. The only ones who make any sense are the integrative ones I see outside this so called team at the hospital.
By the way, I have something to share with you that'll make your blood boil. My liver specialist is part of the team of Drs. The hospital prefers this mychart system to message, get test results, etc. So I had a test done to check on a node on my lung (that is scar tissue) & I messaged the nurse questioning her one sentence message with the results. I literally had the dr call me the next day & lecture me on how the nurse was offended because I said, "what the heck is that supposed to mean?"
I just about lost it w/the dr. They create this dumb messaging system & get upset if you question anything outside the norm. I'm dealing w/multiple Drs & multiple issues. I have every right to be confused or question something.
I'm so turned off by it all that I'm really questioning continuing to see her.
My experiences have been nothing but frustrating w/these Drs & this hospital.
When I go to the integrative dr, it's calming & focuses on healing. Not the, don't ask do what we tell you mentality at the regular dr. I've had more meds thrown at me by the regular Drs that I've said no to, than I can count.
Hi Jules, I’m so very sorry these Docs are giving you such a hard time. Right know you don’t need the extra grief, At this point you need to concentrate on healing yourself, you should not have to worry about the attitudes of you healthcare providers.
I always tell my patients, “learn how to be as healthy as possible, learn your body and what it needs.
And most important Jules: Your Physicains works for you !!!! you pay for that big house he/she lives in and the the beatiful boat he/she plays with.
I hesitate to say this, some of theses Physicians have their heads up their asses (excuse me). Some of these guys can be so irregant! I could scream.
Everyone of my Physicain know what I do and they are excited for me. We need Conventional/Integrative Medicine Here in USA.
I feel bad you have to go through such stressful times.
Your specialist has a responsibility to strive for a relatively stable state of equilibrium for you and help you maintain (Homeostatis)
SunnyXXOO, you hit the nail on the head! I have fired 3 doctors now due to their inability to communicate effectively, return phone calls AND taking weeks to give me test results. They all want me to make an appointment to listen to them talk all for more $$!! I actually had a Dr who would not look at me while speaking! He would speak to my husband in the room and act as if I wasn't there. I said, "HELLO?? I AM YOUR PATIENT." I was so mad at him that I told my husband during that appointment (and made sure this guy heard me), "We are SO OUT OF HERE. THIS GUY SUCKS! I KNOW MORE ABOUT MY ILLNESS THAN HE DOES!" And away we went! True story!
Amy is doing very well today. Denise brought her daughter to see Dr Burt Berkson, he turned around her whole situation around. I though she had AIH (Autoimmune Hep), but she a very healthy beautiful young round young adult.
Denise Otten can be reached via email (info on here website) she follows Burt Berkson’s protocol. Denise is great, she will Skype with you and she’s always there if you need her. She a great Wellness Counselor.
I also have PBC for 15years and I am on ursofalk and find my dose is increasing. I have read B B book on ALA but I didn’t know he had a protocol for pbc. Can you guide me to where I’d find it?
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Generic Ursodiol brands
liver enzymes elevated after Urso brand change. 
Synthroid levels and Urso 
