• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Cholestasis / lack of bile flow

hixxy

Senior Member
Messages
1,229
Location
Australia
I've posted about this before, but still haven't managed to improve this problem.

I've for many years had both elevated total bilirubin and direct (conjugated) bilurubin. This does fluctuate, but the are elevated more often than not.

From my understanding the elevated total bilirubin is indicative of Gilbert's Syndrome (which checks out according to my 23andme results interpreted using the following info (login required):

https://www.23andme.com/you/community/phenotype/thread/3176/

This leaves the elevated direct bilirubin which is in my understanding a result of conjugation happening fine, but the bilirubin isn't able to be excreted via the bile and is indicative on cholestasis.

For many years I have had very pale stools (I'm sure this is much the same for many others). I've tried many things to stimulate bile flow, including:

Phosphatidylcholine
Lecithin
Dandelion root
Artichoke
Tribulus terrestris
Bile Acids
Ox Bile
Taurine
Glycine
Choline
Coffee enema (never again!!)

The only thing in the list that worked at all was the tribulus terrestris. I initially took this 4 1/2 years ago to try and increase testosterone and discovered it worked brilliantly for bile flow. I had perfect brown formed stools for the first time in years. Unfortunately, this herb gave me extreme nervous system side effects, so couldn't continue it. I've no doubt this must have something to do with the increase in luteinizing hormone on the nervous system, I'm unable to figure out how though.

Have many other PWCs had this much trouble getting bile flow happening? Has anyone had success? If so, what with?

Has improving methylation possibly had a positive effect on bile flow?

hixxy
 

nanonug

Senior Member
Messages
1,709
Location
Virginia, USA
Have you tried adding some form of HCl to your stomach (after eating only)? I know that HCl starts a hormonal cascade that includes stimulating the release of bile from gallbladder. Just a thought...
 

hixxy

Senior Member
Messages
1,229
Location
Australia
Have you tried adding some form of HCl to your stomach (after eating only)? I know that HCl starts a hormonal cascade that includes stimulating the release of bile from gallbladder. Just a thought...

I have pretty severe hypochlydria (wouldn't be surprised if it was achlorhydria). I've taken Betaine HCL for 2 years now. Tried both before and after meals. Doesn't seem to help get the cascade going. Even taking 5 caps (which I'm not anymore for methylation reasons), my stomach felt nowhere near acidic. I regurgitated food a few times and it was far from acidic.

Leading up to ME/CFS I was on proton pump inhibitors (I could kill the doctor now!), on ceasing them, my stomach acid never came back, instead ME was here to stay in it's place!

hixxy
 

globalpilot

Senior Member
Messages
626
Location
Ontario
Hixxy,
You could try the liquid HCL. You can take more w/o the betaine issue

GP

I have pretty severe hypochlydria (wouldn't be surprised if it was achlorhydria). I've taken Betaine HCL for 2 years now. Tried both before and after meals. Doesn't seem to help get the cascade going. Even taking 5 caps (which I'm not anymore for methylation reasons), my stomach felt nowhere near acidic. I regurgitated food a few times and it was far from acidic.

Leading up to ME/CFS I was on proton pump inhibitors (I could kill the doctor now!), on ceasing them, my stomach acid never came back, instead ME was here to stay in it's place!

hixxy
 

hixxy

Senior Member
Messages
1,229
Location
Australia
Hixxy,
You could try the liquid HCL. You can take more w/o the betaine issue

GP

I've thought about trying this, but I have eosinophilic esophagitis and a very sensitive mouth. Do you think that would be problematic with the straight liquid non encapsulated HCL?

It would be nice if you could get HCL bound to some other seemingly inert substance for raising stomach HCL levels in a capsule.
 

nanonug

Senior Member
Messages
1,709
Location
Virginia, USA
Leading up to ME/CFS I was on proton pump inhibitors (I could kill the doctor now!), on ceasing them, my stomach acid never came back, instead ME was here to stay in it's place!

Did you ever get your stomach biopsied? Usually, proton pump inhibitors induce hyperplasia which results, upon discontinuation, in overproduction of gastric acid. It is indeed strange the opposite happened in your case...
 

hixxy

Senior Member
Messages
1,229
Location
Australia
Indeed I've been scoped and bopsied too many times. Both ends! :D I also have pyroluria which is known to decrease your body's ability to produce HCL.

The proton pump inhibitors were ceased on instruction from a gastroenterologist. Upon examining my gut she said they weren't needed.
 

gu3vara

Senior Member
Messages
339
I have some pale stools too, comes and goes. Normal bilirubin though so I really don't know what the problem is exactly. Methylation didn't help...
 

brenda

Senior Member
Messages
2,270
Location
UK
I`ve had this problem too over the years and especially lately. But I have found something that really helps and that is manganese. 2.5mg is the suggested dose or 1.25mg to start with. I can`t say whether it is advisable to take b2 as well.

In the past, I would start by looking at herbal remedies, but now I see that many symptoms we have are due to nutritional deficiencies and the longer we have chronic illnesses the more widespread they become.
 

hixxy

Senior Member
Messages
1,229
Location
Australia
I`ve had this problem too over the years and especially lately. But I have found something that really helps and that is manganese. 2.5mg is the suggested dose or 1.25mg to start with. I can`t say whether it is advisable to take b2 as well.

In the past, I would start by looking at herbal remedies, but now I see that many symptoms we have are due to nutritional deficiencies and the longer we have chronic illnesses the more widespread they become.

Interesting.. so b2/manganese is possibly implicated in bile flow problems?
 

brenda

Senior Member
Messages
2,270
Location
UK
I haven`t got any information yet but yes manganese does increase it according to my own experience.
 

Athene

ihateticks.me
Messages
1,143
Location
Italy
My doctor has put me on teasel, which stimulates bile production, and also stimulates the immune system and kills variuos infections.

Here's the bumf:

Teasel
Wild Teasel (in Latin Dipsacus sylvestris) can be used/consumed as tincture during Lyme treatment. Wild teasel has an immune stimulating and strengthening effect and can lead to recovery of rheumatic or metabolic diseases. It is also a helpful remedy against headaches, stimulates and strengthens the digestion and improves appearances on the skin.
diuretic, stimulates bile flow and sweating for gout, arthritis, rheumatism for skin diseases, e.g. dermatosis, furuncles, acne supports digestion and therefore strengthens the immune system in Chinese phytotherapy teasel is used for liver-blood-adynamia strengthens the uterus teasel is also used as an alternative or complimentary remedy in Lyme disease treatment

It's too early for me to say how well it's working - he is starting me on a tiny dose and building up slowly.

What I can tell you is, the best thing I found for myself to build up bile production was to chew all my food for absolutely ages. You have to be ridiculous about it, and go on way beyond the point where it is ready to swallow. If you remember to do this with everything you eat, it really works.

The other thing that blocks bile production is having low cortisol levels due to knachered adrenal glands. Taking artificial cortisol will not resolve this, but getting your adrenal glands reactivated will. I fixed mine by following all the advice in "Adrenal Fatigue" by James Wilson. You have to be willing to take a long list of nutrients. The effect is wonderful once you have got it working, you get so much more energy and you detox properly of course once you you are chucking out bile the way you should.
This is a thread I started where I summarissed the therapy from the book:
http://forums.phoenixrising.me/show...ing-cortisol-and-feeling-DRASTICALLY-improved
 

hixxy

Senior Member
Messages
1,229
Location
Australia
I actually just sent in my saliva adrenal test a few days ago (4 readings of cortisol, one of dhea). So will be interesting to see what the result is. Other then this I've only ever had blood cortisol and dhea done, and 24hr urine cortisol. They seemed fine.
 

xks201

Senior Member
Messages
740
I have had cfs for three years and during this time I developed gallstones. I did an olive oil apple juice Epsom salt gall flush and about 50 stones came out, some as big as my thumb. The flush does work. The question is what is causing the gall stasis? Upon taking niacin and iron with Rich's methylation protocol I notice increased liver circulation which is very pronounced with less fatigue. I happen to believe that the methylation protocol increases neurotransmitters and decreases insulin resistance which increases blood flow and bile flow. In order to avoid stone formation I stay on the methylation protocol. I add glutamine and taurine to help dissolve stones. I recommend checking for t3 and growth hormone deficiency as these are longstanding problems I have had which are about to be fixed which remove stasis as well.
 

nanonug

Senior Member
Messages
1,709
Location
Virginia, USA