Anyone try Dr Burk Berksons protocol for li... - PBC Foundation

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Anyone try Dr Burk Berksons protocol for liver disease & have success?

Caseymayr1102 profile image
69 Replies

Hello all! Hope everyone is well!

So I've been on ursodiol since mid April & had my first blood test since starting. My ggt which was in the 800's went down to 244, my alt went from 75 UP to 100, & my alk phosphate & ast didn't budge. I hate this medication. I actually itch worse on it & I've gained 5 pounds since starting it (even though I eat MUCH healthier & less than I've ever did). I've come across Dr Burksons therapy & started it a few days ago.

600mg of R-lipoid acid

900mg of milk thistle seed

400mg of Selenium

Good B-complex, Dry vitamin A, & vitamin C

Also thinking of starting low dose naltrexone. Issue with that is the fact I take a long acting pain medication for my lupus & breast cancer.

I urge all of you to look into this therapy. All the drs I've seen & not ONE has mentioned it. There's proven success with it & I'm interested in knowing if any of you have tried it with success?

I'd love to get off ursodiol.

Funny thing is, throughout my health journey, it always seems the more conventional therapy gets used on me, the worse I feel.

Take care all!

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Dotyy profile image
Dotyy

Hi Caseymayr1102. Over the years of my first having pbc, I tried many simular diets. Mostly with little success. Although there is no doubt that many of those ingredients are known to have an advantageous effect on this liver it seems there is nothing that is proven to be truly effective. I think it’s good to use some of these things it’s just not to have huge expectations that they will significantly effect the course of the autoimmune illness and for you to have disappointments. Acceptance first helped me. You mentioned naltrexone, sounds good if your not taking opioid pain relief. If the itch is intolerable as I know it can become I’d definitely ask your consultant. I wish you all the best and hope that adding supplements will help you.

PBCRobert profile image
PBCRobertPartner

Ursodiol is just one brand of Ursodeoxycholic Acid, and there are many dependent on your particular insurance.

Historically the Chinese were using bear bile (a natural source of Ursodeoxycholic Acid) for centuries before PBC was even discovered. Nowadays, UDCA is not made from bear bile and is more ethical in its production. However, it wasn't always "conventional medicine".

UDCA is a naturally occurring compound already in our digestive system. When taking Urso, we are just increasing the level of this particular bile acid. The difficulty is that different manufacturers will use different fillers, covers and forms (pills, liquid, capsules) so not every make will agree with everyone. Some people benefit from a change of brand. Some find a brand that works for them, then are affected negatively by changing brand.

I understand the reticence to take Urso and even the dislike for it, but it has been proven over the years to have made a huge impact on life expectancy with PBC. Actually, the latest data shows that early diagnosis and Urso response lead to normal life expectancy.

I also understand you finding this new regime courtesy of Dr Burkson. I do have concerns. When you say it has "proven success", what does success mean? Has it been double-blind placebo trialed with PBC patients? If so, where was this published?

We need to be careful when we make (AND accept) recommendations because each person is an individual. Just look at everyone's own PBC journey and you can see that. I'm not here saying that this regime doesn't work. I don't know that. I am here asking each of us to exercise caution when we consider what we take (after all, it's the liver that needs to process it!!)

Also, I wonder why you are going straight to LDN (presumably for your itch). The latest European guidelines suggest that would be the third strategy to use, with cholestyramine being the first. The last data I saw said that approx. 60% of patients on cholestyramine had improved itch. It is, of course, your absolute right to ask for LDN but, given its potential toxicity, I hope you have explored other options too.

I hope this has helped. Yours,

Robert.

Rosehip19 profile image
Rosehip19 in reply to PBCRobert

Thanks, Robert, for such well-informed common sense. It always worries me when I hear of people going way ‘off piste’ with their PBC treatment.

Caseymayr1102 profile image
Caseymayr1102 in reply to Rosehip19

Hello,

Actually, I'm not going way off base from treatment. I'm still taking urso & have added Dr Berksons therapy. He's an accredited physician & Phd who practices in New Mexico. I've heard him speak & he's had success specifically in PBC patients. There's many books that document his discovery & use of this protocol. He's been using it for 20 years, yet many physicians don't use it because its supplements.

Take care!

SunnyXXOO profile image
SunnyXXOO in reply to Caseymayr1102

Caseymayr, I think Rosehip is talking about me. But that okay, that’s what USA is all about, choices and opinions.

SunnyXXOO

barry147ca profile image
barry147ca in reply to Caseymayr1102

My only suggestion is be careful. Ask the doctor how he measured his pbc success.

Most non-experts have no idea how to measure. (I'm f3/f4, 70 year old male and I'm a plant based diet (no added salt, oil or sugar) I was considering a therapeutic fast.. There is lots of data on fast/autophagy having positive results with autoimmune diseases (ra, ms, ...). I wanted a medically supervised fast. I spoke to one of the big names in fasting & plant based diet and immunity. He said he could help and though he had no pbc experience he had an aih patient which is similiar. He definitely wanted me to fast. It set off and alarm when he said aih was close enough. Pbc is very unique even when compared to psc let alone aih. I did my one research and it turns out autophagy contributes to fibrosis. My "expert" was one of the big names in plant based diets. Lot's of books and a big web site. BE CARE when someone with "credentials" say they can help you. I also spoke to the CEO of True North. The best therapeutic fasting facility in the U.S. They were very interested but because they had no pbc experience they would only consider it if my pbc specialist approved. I asked my specialist at mayo and the would not approve due to the lack of clinical studies. Let me repeat. BE CAREFUL. To repeat an earlier commenter Urso is really the main solution. Intercept has a new drug for non-urso responders. The most exciting stuff is in clinical trials, I think from Gilead. Hope this helps.

SunnyXXOO profile image
SunnyXXOO in reply to Rosehip19

Don’t want to give up my Liver, plus Western Medicine does treat me very wee, never did. I have the best Hematology specialist Dr Fred Gordon, Lahey Hospital, he understands I have to go Integrative.

Caseymayr1102 profile image
Caseymayr1102 in reply to PBCRobert

Hello Robert!

I'm aware of the difference in brand versus the many generics out there. I'm in the process of seeing if my insurance will pay for brand.

As far as Dr Berksons therapy, look him up. He's an accredited physician & Phd who practices in New Mexico. I've heard him speak at a lecture & he's had success in all kinds of liver disease. PBC included. Of course not everyone will have the same results, but my physician agrees with trying this therapy. I will stay on my urso, but if I can find something that will help, I'm going for it.

I haven't been prescribed anything for itch yet, but since starting the supplements, I've noticed the last 2 days itch has quieted a bit. I've only been taking the supplements for a week, so I'll know more as time goes on.

The urso I'm taking is not agreeing with me. Clearly I need to try another brand. Mine are the capsules & I've read the brand are pills.

The LDN is for my lupus. Dr Berkson, Dr Whitaker, & Dr TOTH have had a 90% success rate in helping autoimmune conditions such as lupus.

For now, I have to hold off on taking it, as I'm taking pain meds for breast cancer. I'm dealing with a lot right now, so I'm sure you can see why I'd research alternatives!

Take care Robert!:)

SunnyXXOO profile image
SunnyXXOO in reply to Caseymayr1102

The itch! Well I depend on a few things (1) gold bond itch spray. (2) the inside of banana peel (3) CBD (4) Cannabis Oil.

SunnyXXOO

Caseymayr1102 profile image
Caseymayr1102 in reply to SunnyXXOO

Hi Sunny!

I started using the cbd oil as well. My itch has almost completely disappeared. I'm still only taking the 600mg of the 900mg actigall. The difference was adding the Dr Berkson protocol & cbd oil. Once I got on that the itch went away! The cbd oil is fantastic!

Never heard of banana peel though. How do you use it?

People who don't have PBC don't understand just how awful that itch can be!

Take care😊

Jules

SunnyXXOO profile image
SunnyXXOO in reply to Caseymayr1102

Peel banana: Rub inside banana peel on the itch, not banana, lust inside of peel. You can use few times, I put peeling in plastic bag and use during day if needed. Works really well, I will use at times, most of the time I use CBD day and night and Cannabis Oil at bedtime. Sunny XXOO

SunnyXXOO profile image
SunnyXXOO in reply to Caseymayr1102

Just peel banana and rub inside of peel on itch (can reuse 1-3X’s), just put in baggie), works great.

I tried Actigall, put me in a stupor 24/7, my husband had to lead me around, I couldn’t make good decisions, it was awful.

SunnyXXOO

mrspeffer profile image
mrspeffer in reply to Caseymayr1102

Good morning. I was just reading your post and am very interested in doing research on Dr. Berkson. I just know in my heart there are more natural ways to control, and possibly reverse our situations. You mentioned breast cancer. I'm so sorry you have to deal with this. I had a scare recently with some pre-cancerous cells. I see an alternative doctor in West Hollywood(old Russian scientist in his 90"!!!) Anyway, he had me start B17(available at PureFormula.com) and also the Dr Budwig cottage cheese remedy. My "cancer" is now gone. I continue to use the protocol now as a preventative measure. The B17 is a 500mg tablet, so cut in half and start with 1/2 daily until tolerated.

thanks for sharing your findings

Caseymayr1102 profile image
Caseymayr1102 in reply to mrspeffer

Hello😊

Thank you for sharing that info! I will look into the B17. I'm in the process of changing everything about my diet, exercise, etc. I've just read about not only a cancer killer, but something that helps regenerate the liver.

It's called, sulforaphane. It's a competent in all cruciferous vegatables. So cauliflower, brussel sprouts, cabbage, broccoli...

The active component in it releases sulforaphane. It's responsible for turning on over 200 genes & is a potent phase 2 detoxifyer of liver enzymes & protects cellular DNA as well as promote healthy cell replication & liver health.

If you search Amazon for Broccomax, it's a good one to take.

Here's to finding good health naturally!😀

Jules

mrspeffer profile image
mrspeffer in reply to Caseymayr1102

Thanks...I have used a broccoli based supplement called DIM to reduce the amount of Estrone in my body. I wonder if it chemically acts the same? I'll do some research

mrspeffer profile image
mrspeffer in reply to mrspeffer

Also...chaga tea and graveola

Caseymayr1102 profile image
Caseymayr1102 in reply to mrspeffer

Thank you! I will definitely look into it! Jules

Caseymayr1102 profile image
Caseymayr1102 in reply to mrspeffer

Oh how funny, I was just looking into DIM! It's recommended for breast health. Any particular brand you found good? The sulforaphane acts different. It was recommended (along with the DIM) for breast cancer health, but I found it's also very beneficial to the liver! It takes getting used to because it can cause some gas & bloating. However, I've read it's a "good gas" that helps release molecules into our bloodstream & turn on 200+ genes.

😊Jules

mrspeffer profile image
mrspeffer in reply to Caseymayr1102

Hi...I found the Vitamin shoppe house brand to be the cleanest. Pure DIM. I started with cutting a 100mg in half( empty the cap into almond butter), increase every 5 days by 50 mg until I reached 300 mg daily. Worked great.

I get my labs done again this week. It will be interesting to see the results after DIM, no synthetic hormones, milk thistle and livable. Also take B's, A, E, Fish oil, B17, D3,

blah, blah, blah...Good thing I don't work anymore! this health stuff is a full time job!

mrspeffer profile image
mrspeffer in reply to mrspeffer

The chug tea and gravel are for cancer prevention along with the B17

mrspeffer profile image
mrspeffer in reply to mrspeffer

Chaga, not chug tea

Sachin1234 profile image
Sachin1234 in reply to Caseymayr1102

I have been eating broccoli, cauliflower, Brussels sprouts and green beans 1 cup each every day since 2017. I lost my weight but alt went up from 31 to 44 this year..

SunnyXXOO profile image
SunnyXXOO in reply to PBCRobert

I don’t think I said Dr Berkson had Tx that cures PBC.

I have taken all of Western Medicine has to offer, they had horrific side effects that just cause other problems. My Liver Specailist is very aware of what I do, I tell him everything.

Dr Berkson started of his career with majoring in microbiology of the cells. Burt tries to get to the route of the problem and is successful very often.

I’m not sure if you know this or not, MD’s take only a crash course of microbiology, us Nurses had to take 2 full semesters microbiology. Doesn’t matter what elite schools these MD’s attended, crash courses were very common.

I am very careful what I put in my mouth, I have been dealing with this PBC for many years, may be dealing with Novosphingobium antigen and if that’s the case I can chase out antigen. Burt Berkson actually told me Novosphingobium is involved here with Liver.

Novosphingobium antigen is found in marine water, pond water and soil, .we grew up on beach and also clear water pond. Wouldn’t that be a kicker if I have been dealing with an antigen all these years.

Last time I went down to New Mexico, I faxed Liver Specailist and Primary labs and CT Scan results. My Specailist didn’t pay attention to micro labs, he almost fell off his chair when we address micro labs.

So now you know where I’m at in my journey, I live in Massachusetts.

I stay in touch with people from England, Germany, Japan and Canada, these countries are so far ahead of us it’s amazing. Big Pharma is involved with keeping there Treatment out of USA, too much money to lose.

Big Pharm, Hopitals, MD’s etc are all in bed together, everyone is being paid off (money, boats, cash, homes etc), to continue to push there drugs.

Stem Cell Infusion sounds very promising.

SunnyXXOO

Stamatiki profile image
Stamatiki in reply to SunnyXXOO

Hi Sunny, Just tested positive for AMA marker. Was wondering where you doctor is located. Looking for an a dr with an open mind! Would love to hear how your doing (hoping well!). Am considering a visit to Dr. Berkson......would appreciate any advice!

JaneIng profile image
JaneIng

Hi Caseymary1102, I have used Dr. Berksons protocol with some modification.

However I was not officially diagnosed with PBC yet. I am on the watch list because I have positive AMA M2, slightly elevated/borderline AST, ALT.

I took 600 mg alpha lipoic acid, 400 mg milk thistle, methylated B complex, 500 mg vitamin C, 2 brazil nuts daily. After 2 months, my AST and ALT is in normal range (in the 20s), to my surprise, my A1C dropped to 5.3 (used to be 5.6). The disappointment is that Cholesterol still high, no change.

Hope this helps.

Blessings,

Jane

Caseymayr1102 profile image
Caseymayr1102 in reply to JaneIng

Thank you Jane! It does help & I wish you continued success on it! I hope you can find a way to lower the cholesterol too!

Take care!💖

SunnyXXOO profile image
SunnyXXOO in reply to JaneIng

Alpha lopoic Acid is fabulous, have to remember APA robs you of your B’s, have to supplement

Caseymayr1102 profile image
Caseymayr1102 in reply to SunnyXXOO

Oh I agree! It's been wonderful! I started a B complex when I started the alpha lipoic.

I cannot say enough good about alpha lipoic acid!

Jules😊

SunnyXXOO profile image
SunnyXXOO in reply to Caseymayr1102

Caseymayr

Just thinking about you, just gave myself B12 injection. If you have Integrative Physicain, he/she can call in Rx for B12 injections.

Burt Berkston has me taking 4 capsules of B-Complex (big capsules).

Johnson & Johnson Compound Pharmacy in Boston, Ma sends a month’s worth of B12 (one injection wkly). I inject thighs or deltiod. EASY!! I like easy. 🙂🙃. Still have to take B caps but not as many.

SunnyXXOO

Caseymayr1102 profile image
Caseymayr1102 in reply to SunnyXXOO

Hi Sunny!

I'm seeing my GP on the 20th. He & I have lots to talk about. I'm going to bring up the injections for sure. I also want to have him start doing vitamin c infusions for the cancer. Did my regular accelerated round of radiation but pulled the plug on the boost session. I'm delving into this head on with proven natural medicine. My lupus is now flared from radiation. My liver is doing much better though & has remained stable throughout this. Itch is completely gone.

I have so much going on it's hard not to get down. I believe I have estrogen dominance, adrenal issues & endocrine issues, & problems after years of low dose prednisone use.

Getting breast cancer woke me up to finally getting to the root of all this.

Jules😊

Caseymayr1102 profile image
Caseymayr1102 in reply to SunnyXXOO

What brand of b complex do you use?

SunnyXXOO profile image
SunnyXXOO in reply to Caseymayr1102

Casrymsyr, I use Vit C Metabolic Maintnance brand name, Also Bio-tech brands, plus I give myself B12 injections weekly, comes from compound Pharmacy.

The Pred would create havack with EVERY organs of the body. But, even though I don’t care for Pred, there are emergency situations we may need it, just hoping MD makes it short term, plus weens you off correctly.

FYI - I’m think your regular GP is not going to do anything with Integrative Medicine, sorry. There has to be someone in your area that practices Integrative medicine.

Let me know,

SUNNYXXOON

Caseymayr1102 profile image
Caseymayr1102 in reply to SunnyXXOO

Hi Sunny!

My GP isn't like most gp's. He bowed out of traditional practice years ago. He's the kind of dr you go to when no one else can help. Never really asked him if he considers himself an integrative dr. He does practice non traditional methods. He does infusions and works with things you'd never get from a regular dr. Early on in my lupus, he brought up trying countless different things. I wasn't familiar enough all those years ago to understand or want to pay uninsured costs. He knew exactly what I was talking about in regards to Dr Berkson. He's sat in on many of his lectures. So I do believe he'd absolutely be willing to delve into this with me. It was mostly me who put the brakes on it years ago. Plus, he's worked w/a naturopath at one point. I know if he cannot do it, he can refer me to who can.

I'll keep you posted for sure! I just know I cannot keep going like this. Radiation has caused an issue with fluid & pain in my ankle now. Sickens me because prior to radiation, I had been feeling better than I have in a long time.

Take care!

Jules😊

Naturalanswers profile image
Naturalanswers in reply to SunnyXXOO

I'm new to all this and am wondering how much B vitamin Berkson recommended. I can't find it anywhere online.

Thanks! Hoping you're still improving.

KiwiPBC profile image
KiwiPBC in reply to JaneIng

Hi Jane, just wondering if you are still following this regime? And do you still have positive results? Did you also take Urso alongside this? I am thinking of starting a similar protocol. Thanks in advance

JaneIng profile image
JaneIng in reply to KiwiPBC

Hi KiwiPBC,

I am still taking the same supplements as before, just not as much. I alternate them because there are so many pills to take and my stomach can't handle it, especially I have added calcium citrate, magnesium citrate, copper, p5p, ...

I never took URSO and my doctor stop testing AMA because he said I will always be positive on AMA M2. We just need to monitor liver enzyme. So far I am still in a good range. I think Alpha Lipoic Acid is to be credited for that.

My cholesterol is still high. :-( I don't want to be on Stain to lower the cholesterol. My genetic test shows that Stain is not effective for me.

Hope you find a good protocol that fits you..

--Jane

KiwiPBC profile image
KiwiPBC in reply to JaneIng

Thanks Jane, I have messaged you privately, I hope that is ok - Shelley

Ktltel profile image
Ktltel

Hi caseymayr1102,

I was diagnosed Oct. 2016. Went straight into panic mode ( unnecessarily) but.... it happens 😑. I researched the web like a mad woman, met everyone here on Healthunlocked and also came across Dr. Berksons protocol. Within a month I found a reputable naltrexone pharmacist and looked to Amazon for the supplements (R-alpha Lipoic acid, Selenium, and Milk Thistle) for the next year and 1/2 I drank plant based protein smoothies, cut out sugar, carbs, and dairy and started seeing a naturopath too. I'm a firm believer in the leaky gut theory.

Anyway, I lost weight, my LFT's did improve and I felt better. (Originally I was diagnosed early stage one by biopsy...not sure that's the way to go for complete stage accuracy) But, unfortunately for me, I felt so much better that I totally slacked off! I didn't drink alcohol, never really did. But in the last 6 months I've just fallen off the path of righteousness... Lol. Meaning I've been eating badly and stopped taking my supplements too. I did keep taking the low dose naltrexone though!! That really does help my mood and well-being. I'm working on getting back to my clean well balanced liver friendly diet again. I am. 💪

It was brought to my attention though, that Dr. Berksons protocol, (although very good and there are testimonials proving it really is helping people,) is for those people with "sick" livers. Our disease, PBC, is an "autoimmune disease" where our own body is attacking our bile ducts. "Eventually" this will have that negative impact on our liver. But still, it's the AI disease attacking the bile ducts that's the problem. That's the sickness I'm addressing these days. If I can find a way to treat the underlying cause of this AI, maybe I can balance out my sick immune system and turn things around or at least slow down the progression even further. I start seeing a functional medicine doctor in August. Expensive. ☹️

Over the past year and a 1/2 my LFT's did go down and I did feel better. When I went off Dr. Berkson's regimen as well as my liver friendly diet, my LFT's went up... BUT I also gained weight. This inturn messed up my URSO dosage (which is weight based as you know) and therefore this could also be the reason for my LFT's raising about 10-15 points.

Please keep in mind Dr. Berkson's protocol is for liver disease. PBC is an AI that effects our bile ducts. I do plan on starting my supplements again, I guess I'm just gonna cover all the bases. Do some research on Functional medicine... a reputable doctor. (Dr. Mark Hyman's protocol for one.) There are quacks out there for sure.

If you have any questions about anything I've said, please feel free to message me.

Stella ❤

Caseymayr1102 profile image
Caseymayr1102 in reply to Ktltel

Hello Stella:)

I've also done a tremendous amount of research. I was diagnosed w/lupus back in 2005 & learned to weed out the false info on the internet. Dr Berksons therapy also has worked for PBC, not just viral hepatitis. I listened to him speak & he says he's had success w/all forms of liver disease, PBC included. I've come across several success stories using the protocol for PBC.

I know it's a shot in the dark, but it's one I'm willing to take. I've also started changing other aspects, such as diet & working out. So I'm hoping it'll help to some degree!

Thanks for replying to my comment!

Take care!💖

Ktltel profile image
Ktltel in reply to Caseymayr1102

Thanks for the information. I haven't looked into anything recent regarding Dr. Berkson. I never read anything about him working with PBC patients. Only other liver diseases, cirrhosis being one of those. I actually contacted his office in New Mexico hoping to ask a few questions about my diagnosis and his experience, if any, with PBC. I was told by one of his nurses that they would not discuss anything over the phone and that I needed to make an appointment in order to go any further. So, that was the end of that. I just wanted to ask him if he had worked with PBC patients, and if he thought his protocol could help even ones in early stage PBC.

Anyway, your mentioning that he does is the very first I've heard of it. I'd love to read those findings. Could you point me to the information, web page, etc.? I'd be very interested to read about this.

Thanks 👍

Stella ❤

KiwiPBC profile image
KiwiPBC in reply to Caseymayr1102

Hi - I was just wondering if you are still following Dr Berkson's protocol and if you have had any success? thanks in advance - Shelley :-)

SunnyXXOO profile image
SunnyXXOO in reply to Ktltel

Let’s Stand Together

81 years ago, we were robbed and cheated.

In 1937, with the rise of Big Pharma, in addition to several other corrupt and greedy industries were on the rise, the powers that be squashed access to most healing and versatile plant on earth, The Sacred Plant.

Prior to this, The Sacred Plant was used to prevent, treat and even beat hundreds of conditions and diseases for 5,000+ years. It was also used for food, clothing, paper, fuel and so much more.

Due to their smear campaign, and the regulation of this sacred plant, people have been getting more and more sick. The current medical establishment was born and we are now all paying the price and are suffering at the expense of their greed. They are profiting from our pain and there’s finally something we can do about it…

We must stand together. We must get this information out to as many people as possible. We must place the power back in the hands of the people. We must take back control of our health and demand safe access to this sacred plant.

Caseymayr1102 profile image
Caseymayr1102 in reply to SunnyXXOO

Hi Sunny!

Interesting enough, I walked into my oncologist yesterday & was told that at 48, I have bone loss from steroids (for my lupus). I've got myself down to 3mg daily & will continue to rid myself of it. However, years ago when I was put on it, I believed everything the drs told me. So my oncologist (before I can take a breath) says she's scheduling me next week to start injections of some drug. There's no way I'm doing it.

Thanks, but I'll behold none strength naturally.

They're so quick to throw more drugs at you & then take they're kick back from the drug company.

It's all about the money. Western medicine may work for some, but all it's done is make me sicker & sicker.

😊Jules

SunnyXXOO profile image
SunnyXXOO in reply to Caseymayr1102

Caseymayr1102

So sorry to hear that!! Unethical physician pass out steroids like they are candy. You will never hear of a MD’s, spouse or children taking steroids, unless there is inflammation that needs to be addressed ASAP,

Steroids will make you bones very brittle, messes with adrenal gland - basically affect every organ and bone in your body.

Being in the medical field, it infuriates me every time I hear this.

I personally would start taking liquid form of calcium (at least 1600mg daily) with magnesium and Vit D.

The Docs will try to give you an RX, you can take better from health food store. I’ll tell you what I take, hold on. - Cardiovascular Research Ltd. there are better ones also, research everything before putting in your mouth.

SunnyXXOO

Caseymayr1102 profile image
Caseymayr1102 in reply to SunnyXXOO

In my response below it's supposed to say no thanks, I'll build bone strength naturally. Not, I'll behold none strength! 😂

SunnyXXOO profile image
SunnyXXOO

Think in mentioned I take 3mgs, live put me 50mg which I turn caused more problems (history). I can’t take Urso, I’m only on diuretics in regard Western Medicine. I have appt with Liver Specialist at Lahey Hospital, bld work, MRI then consult with good Dr Fred Gordon (Routine)

I think my husband and I are going down to see Burt Berkson around the 7th July. Burton asked for 1 month, he will have tighter control of treatment. Thinking seriously about it but still bouncing around. Yesterday down there 110 degrees Wha-Whoooo

Caseymayr1102 profile image
Caseymayr1102 in reply to SunnyXXOO

If you do go, PLEASE let me know how you do. I've been seriously considering it as well. My issue right now is still dealing w/breast cancer treatment. My cancer is stage 1a so I refused chemo. Doing radiation but having 2nd thoughts about it. I used to believe in western medicine. Not so much anymore. The liver issue really sealed it for me. It's amazing how many natural ways you can cure things! Drs never tell you any of it.

I'd love to see dr burksen, so it'd be great to hear how it goes.

Please keep in touch! I've only found a few on here so far that aren't deeply immersed in western medicine.

Gotta love that New Mexico heat! I'm not used to it so it'd be a shock going down there. I'm in the Midwest near Lake Michigan. Summers get hot but manageable! Winters are the worst!😆

Take care!

Jules

SunnyXXOO profile image
SunnyXXOO in reply to Caseymayr1102

We were down there a few months ago, the dry heat help somewhat. Last 2X’s we where there, I basically committed myself to Burt’s time. Jack and I didn’t do a whole lot but we walked every morning, shop, my husband goes to the gym while I am under IV Infusion. I’m thinking we will rent executive home through management company for 1 month, trying to find one with a pool.

I’ll keep in touch.

SunnyXXOO

SunnyXXOO profile image
SunnyXXOO

Had hard time with losing little extra weight also, I went to gym 3-4 times plus walk 3-4 miles almost everyday. My Liver guy gave me diuretics for ascites, now I can’t gain wt no matter what I try. I went from 122 to 105 lbs, to much wt loss but always working on gaining at least 10-15lbs.

My daily diet is very good.

I had labs and fibroscan yesterday, my numbers are the lowest they have been since I was Dx, thought my Specialists was pretty baffled.

SunnyXXOO

SunnyXXOO profile image
SunnyXXOO

I have seen Dr Burt Berkson turn around his patients. I have sat in his IV Room with 12-15 other patients. Usually when I go to see Burt, his IV room is filled with people all over the world, I have sat next to Medical Specialist from all over the world, they don’t want to cut out there organs so they see Burt and knows it works,

SunnyXXOO profile image
SunnyXXOO

Hi it’s Sunny, we recently got back from seeing Dr Burt Berkson, he treated me for 19 days.

Remember I spoke about Aperiomonics? We got results last week, according to this test there is 2 antigens in livers.

Psuedomonas stutzuri:

We believe one antigen came from a surgery I had 30 yrs ago.

Pseudomonas psuedoalcaligenes:

Antigen’s environment is Marine water, pond water and soil, we grew up on ocean and pond water, I was a swimmer.

Atigen(s) obstructing bili veins.

Due to test results I am on Keflex 100mg 3X/d.

All other labs ranges are great.

Let’s keep our fingers crossed. We kept same protocol but added Glutathione IV.

I understand you would like to pick up Netrexone, 3mg at night (heal while sleeping).

If your looking for info on Burt, I’ll answer what ever questions I can.

Go up on internet, you will be able to find out how much success with he has had with PBC and Autoimmune. Have you been in touch with Denise Otten? Denise is pretty knowledgeable.

Love, Peace, Graditude and Love

Sunny XXOO

sunladyjoy profile image
sunladyjoy

Hi! I'm starting the protocol this weekend and am wondering, are you still taking all three supplements? How often do you get your levels tested? How are you doing? Hopefully a lot better!

Thank you & Happy Holidays

Caseymayr1102 profile image
Caseymayr1102 in reply to sunladyjoy

Hello:)

Happy Holidays! I’m doing quite well actually. I still take the protocol & have recently added some other hepatologist approved liver detoxifiers. Those are primarily for my hormone positive breast cancer. However, I’m learning the connection between a compromised liver & why I developed hormone positive breast cancer. My liver function tests are greatly improved. ALT & AST are normal, GGT is just above normal at 85 (from 885), & ALK phos is at 145. Numbers continue to come down. I’m completely off prednisone & have eliminated some other scripts as well. I still take my Actigall as prescribed. My liver dr has approved of Dr Berksons protocol & feels it can only help.

I hope this helps! Let me know if you have any other questions.

Take care,

Jules

KiwiPBC profile image
KiwiPBC in reply to Caseymayr1102

Oh I replied to one of your older messages above in this thread - great to see you are doing well on this protocol, I am going to start on this! Do you take LDN? Aplha lipoic acid, Milk Thistle? Anything else? and are you still taking your Urso alongside all this? Many thanks - Shelley :-)

Caseymayr1102 profile image
Caseymayr1102 in reply to KiwiPBC

Hi Shelley,

Yes, I’m still taking all the supplements. I’ve also started glutathione (with my liver specialists approval) It’s the master detoxifier & I started it for both liver & cancer health. I’m doing quite well in them but have also changed lifestyle & dietary habits. I’m dealing with lupus & breast cancer too. My targeted infusions for breast cancer caused my liver enzymes to rise. So those treatments have been put on hold until liver enzymes normalize again. My liver dr feels strongly that the supplements I’m taking can only benefit the liver. She wants me to stay on them. I do still take the Urso along with them. For me, it’s like taking a daily vitamin. It can’t hurt & can only help.

I hope this helps & you can start the supplements!

Take care😊

Jules

KiwiPBC profile image
KiwiPBC in reply to Caseymayr1102

Thank you so much - I actually just posted a question on here asking if anyone has tried the LDN :-) I have been looking at glutathione to start also, which brand have you started on as many are not good quality. Thank you so much for replying! :-)

Caseymayr1102 profile image
Caseymayr1102 in reply to KiwiPBC

Oh you’re welcome 😊

I actually was just prescribed low dose naltrexone. A compound pharmacy has to mix it up in such low doses.

I’ve heard excellent results with use for not just PBC, but cancer & autoimmune diseases in general.

I haven’t started just yet as they have me on a long acting pain reliever (for surgery recovery).

I’m super excited to give it a try as soon as possible!

The glutathione I use is from Amazon. My dr said it needs to be the liposomal form. The brand I use is Core by Med Science. They make both a liquid version (taste was BAD) & a softgel. I found the softgel much easier to take. The liquid has a sulfur taste & for me, was hard not to gag on it. It depends though on wether or not that would be an issue for you.

Everything I take or do gets run past my liver dr. I’m trying to treat my lupus & breast cancer as natural as possible, so I make sure she knows everything I’m doing.

Good luck to you & I’d love to hear how it works for you!

Take care,

Jules

KiwiPBC profile image
KiwiPBC in reply to sunladyjoy

Hello! I was just wondering how you are doing on the protocol? I am looking at starting this week! Hope you are well :-)

Sachin1234 profile image
Sachin1234

If your liver enzymes are running high even after urso then it is time stop taking any supplements except multivitamin..

Caseymayr1102 profile image
Caseymayr1102 in reply to Sachin1234

Hello,

Maybe you didn’t read my entire comment. The drug Herceptin used for targeted breast cancer treatment is causing my liver enzymes to rise. Prior to Herceptin I was fine. The drug can cause liver issues, especially in someone with PBC. My elevated liver enzymes are not extreme either.

My liver specialist is in constant communication with my oncologist.

Also, my liver specialist feels the supplements are helping the enzymes. My alt & ast are normal. My ggt is now normal & alk phos is at 189.

Prior to Herceptin infusions for cancer, my alk phos was at 145.

Next time please understand what you are talking about. I’m going through cancer treatment, lupus, & not just PBC. I’m doing better than I have in years & have been able to completely stop steroids.

Jules

Sachin1234 profile image
Sachin1234 in reply to Caseymayr1102

I did read your entire comment! I wrote what I been told and what didn’t work for me when I used all kinds of supplements..👍🏼

Caseymayr1102 profile image
Caseymayr1102 in reply to Sachin1234

Again, I’m going through breast cancer treatment & getting infusions to target my particular type of breast cancer. The rise in my elevation was caused by the drug to treat the cancer, not because of needing to stop particular supplements.

Since putting the infusions on hold, my alk phos has begun to decline again.

It’s unfortunate you didn’t have good luck with supplements, but I have. Everything I do for my cancer treatment, my lupus, or PBC is run by the liver specialist. I don’t take a Tylenol without discussing it with her. She informed me that she’s had other PBC patients also have some success in using particular supplements.

I wish it was just the PBC to deal with, but juggling 3 different diseases is not easy. I do not just jump into doing whatever I feel like or have read about. I discuss everything with my dr. Fortunately, she’s the type of dr to look beyond the black & white. She’s been a tremendous help in navigating it all.

I’ve been doing Dr Berksons protocol from day one & have added supplements to combat the cancer as well. I’m certain if anything needs to be changed my dr would let me know. For now though, I’ll take all the success I can get. 😊

gwillistexas profile image
gwillistexas in reply to Caseymayr1102

Sending prayers & healing thoughts 🙏🏻😊

Caseymayr1102 profile image
Caseymayr1102 in reply to gwillistexas

Thank you!💕

PixyJ profile image
PixyJ

hi caseymayr1102

i hope this finds you well, did you continue with Dr Burksons therapy that you outlined?

Are those measurements listed above daily? Did you continue with Urso while taking these? Is there definitely proven success with it for PBC??

thanks

Caseymayr1102 profile image
Caseymayr1102 in reply to PixyJ

Hello😊

Yes, I do still take his recommended protocol. I’ve been on it non stop & found it to be helpful. I do take my Urso & have discussed all this with my liver specialist. Fortunately, she is very open minded regarding other options to help PBC. I also use cbd oil & glutathione. The glutathione is a master detoxifier & helps liver tissue. It has to be liposomal glutathione though. That works hand in hand with the R-Alpha lipoic acid.

My alt & ast are way down in normal range. My alk phos began to rise again due to a particular treatment for breast cancer. Since stopping that treatment, my alk phos is falling again. It’s at 186. It’s been steadily falling as the medication I’d been receiving for cancer is out of my system (which will take another 12 weeks to be completely gone).

All I know is that the protocol certainly cannot hurt & in my case, has helped me.

The strengths I listed are what I still take today.

Take care💖

Casey

Naturalanswers profile image
Naturalanswers

Just wondering if you are still finding success with the protocol. I'm looking into it but would like to hear that someone has had long term success.

Caseymayr1102 profile image
Caseymayr1102

Hello:) I’m doing well on his protocol. I’ve stayed on it since my liver specialist thinks it can only help. The only thing I’ve stopped using is milk thistle. Only reason for that was because my numbers had improved enough. I use other supplements to treat my hormone positive breast cancer (done with active treatment & cancer free) & I’m trying to cut down on cost of all these supplements. I still take 600mg daily of R-alpha lipoic acid & a good bioactive B complex vitamin. I found a couple good ones on Amazon. Just make sure to take bioactive B & the R form of alpha Lipoic acid. The milk thistle was 900mg daily as well.

Let me know if you have any other questions. My ALT & AST are normal. My GGT is back in just slightly above normal range (after being almost 900), & my ALK PHOS is also slightly above normal. I still take my Ursodiol daily.

Take care😊

Casey

Stamatiki profile image
Stamatiki

Hi, hoping you are doing well! How is Dr. Berkson protocol going for you? I am new to PBC, any guidance would be appreciated! Thank you

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