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CFS/ME as a Liver issue

undcvr

Senior Member
Messages
822
Location
NYC
This is true, there is a condition called steatorrhea which is when you pass out oil in your stools. They are oily and pale. But remember this too is a liver condition, it is a sign of a weak or malfunctioning liver. It could be that it is not producing enough bile acids, or there is blockage along the ducts somewhere (rarer but will be accompanied by pain in the liver area). If its just pale stools and you are under stress which I guess for CFS can be anything, it still goes back to bile.

It always comes back to bile and the liver at some point.

Also if u c a mainstream doctor and u have CFS and pale stools and u tell him about it. He would much sooner throw you under a bus to be run over several times than to admit to an alternative medicine view on the liver so gudluk with that.
 

undcvr

Senior Member
Messages
822
Location
NYC
One observation that I would like to point out that is in the realm of modern medicine, up to this very day, THERE IS NO MEDICATION THAT HAS BEEN DISCOVERED TO MAKE THE LIVER PRODUCE MORE BILE.
There is Welchol, that binds to bile acids to make your liver not recycle bile so much. It can cos constipation but there is no man made drug that can make the liver produce bile. It is only in nature that we find them.

It's not a coincidence that CFS/ME lies outside modern commercial medicine.
 

chilove

Senior Member
Messages
365
I started using calcium bentonite clay liver packs to detox my liver and have been noticing several benefits.. I;m sleeping better, am more relaxed during the day, feel less inflammed in general, digestion is better (I was able to put on some much needed weight)
 

undcvr

Senior Member
Messages
822
Location
NYC
So we understand that CFS/ME pple have much lower stress points than an average healthy person and that alot of systems inside of us are much weaker than normal. In particular I have identified 3 of them: the liver, basic enzyme reactions and metabolic processes and the immune system. I still argue that CFS/ME is not an immune system issue even tho I realise that the immune system often takes the hit for many of its symptoms because it is so sensitive. I still think that it is a spill over or an after effect.

For the CFS/ME subset that I am most familiar with the symptoms that I notice are

- a generalised lower grade body temperature than a normal healthy person, that would be 98.6 and you would be about up to 1.5 degress lower than this persistently. The rationale here is that enzyme systems are exquisitely temperature sensitive to function and becos of this persistent lower body temperature you cannot function as normal. It explains alot of things, such as why we all do so poorly in colder climates.

- pale stools. A result of insufficient bile production or simply a weak detox engine that just cannot get rid of toxins fast enuf as they appear. Dark colored stools are what you are going for all year long no matter what the weather or no matter how much stress you are under.

Then when those 2 functions start to break down, toxins start to accumulate in the immune system and CNS and then you start to get the immune system going haywire and all sort of problems happening. By that time toxins would start to accumulate in metabolic pathways too and the vicious cycle just keeping spiralling worse off.

If this is true then there is no magic bullet for CFS/Me just cos it is the product of so many important and fundamentally systems breaking down and it is a reflection on the supplements that we take and what works too. The supplements that work for CFS/ME are all fundamental vitamins and nutrients that we need much more than what the FDA recommends becos we need to support these systems and organs.
 

EtherSpin

Senior Member
Messages
257
Location
Melbourne , Australia
Id suggest getting naringenin in tablet form (its the compound in citrus that helps the liver) rather than too much grapefruit juice, I was having about 8 glasses in a 50/50 mix with water per day and I attribute that to stripping the enamel from my previously white teeth, now Im stuck, need to try to brush softly and carefully but need to make my gums and teeth clean enough to avoid disease and a couple of my teeth are so sensitive im nervous to show a dentist and let them scratch away at them
 

undcvr

Senior Member
Messages
822
Location
NYC
I came to the same conclusion. There are bioflavonoid supplements out there with naringenin and quercertin without all the sugar and acid.
 

undcvr

Senior Member
Messages
822
Location
NYC
Consistent with the title of this thread, I have been on the following protocol now for awhile. It has been helping and it is the main reason to my recovery:

Slow down phase 1
Speed up phase 2
Make more bile
Get rid of bile asap

This concept focuses on the liver only, you can recover with that.
 

triffid113

Day of the Square Peg
Messages
831
Location
Michigan
So my theory is that pple with CFS/ME actually have a problem with their liver function. From all the liver tests that I have done and all the other pple with cfs that I have interviewed and looked at their lab work, the common result is that phase 1 is very out of whack with phase 2. Phase 1 can be function at like 20 times faster than phase 2 causing all these intermediate metabolites to spill over into the blood and go everywhere else in the body to cause havoc. Slowing down and speeding up phase 2 seems to be the most practical thing to do but even then it is not easily accomplished since the liver phase one is working at a much faster pace than phase 2 there is no realistic way of speeding up phase 2 and all it's 6 detox pathways at once. I think that a better way to do this is to stabilise the liver and make it work more orderly and this should help much more.

All these toxins running around is what is causing problems with the other glands, organs and the gut. If you do not treat the liver with whatever system you are treating at the same time, the issue with only come back.

The solution is: a good multiple B vitamin complex and Grapefruit juice. You can take the B complex a few times a day even and drink 4-5 cups of grapefruit juice. The B vitamins taken together with stabilise the liver and make it work more normally which grapefuit can slow dwn phase 1. Citrus fruits, which grapefruit is a member if is very very interesting. In all my research that I have done, they either speed up phase 2 or slow down phase 1. Both these 2 effects are desired when you have cfs. Of all the citrus fruits I have read, only grapefruit and bergamote, slow dwn phase 1, the rest speed up phase 2. Also it is not just the juice or the pulp that you have to eat, it is the whole fruit. Much of the active ingredients are in the rind/peel and whites of the fruit. When you juice, put the whole fruit in.

Again just taking these citrus fruits alone is not enough because phase 1 is so quik that that the whole detox system is out of whack. There is no way you can make phase 2 keep up, you need to slow phase 1 dwn. Grapefruit and B vitamins do that.
I agree we all have a liver problem because the methyl cycle IS the biochemistry of the liver!

I thought studies said all cause mortality goes up if you eat grapefruit even 1x/week. I never looked a the studies but I theorized it is not the way it is made to sound - a cause and effect. I think the people most likely to eat grapefruit are people with low stomach acid as it improves digestion and I think people with low stomach acid probably have a higher mortality rate (not cause and effect but effect and related effect). At any rate I would want to look into it before eating a lot of grapefruit.
 

triffid113

Day of the Square Peg
Messages
831
Location
Michigan
I agree with Sushi - it's a very interesting idea, I think you're actually onto something for many people in some roundabout way. But for example, like Sush my Phase I was nearly wiped out, in my case by toxic exposure, whereas Phase II was normal to possibly even high. The analysis said the ratio was off and increasing glutathione could imbalance the system further. All that happened before getting CFS.

When now I take even tiny amounts of grapefruit, GSE, or milk thistle, I get severe liver pain, the one time with GSE even leading to a crash of some sort. I take B-Right every day, along with extra B5, and haven't really noticed anything with it. My molybdenum was really low, so I supplemented that and again noticed nothing. Really surprising b/c I thought increasing the phase I would help.

So while you might be on the right track for a lot of people - running 3 miles a few times a week is amazing - even one mile one time a year would be amazing for me (meaning taking the whole year to do it incrementally, lol) - what do you say about this reverse situation? So far it seems that if this theory is true only the fast Phase I condition is amenable to treatment that improves the fatigue.

Thanks, very interesting topic.
How do y'all know what your phase 1 and phase 2 liver is doing? What tests for that?? I know my liver is not able to handle as much niacin as I used to be able to handle. I think it is because of the methylation protocol I am on or maybe taking 1 g. olive leaf extract (polyphenols) as the liver has to process all this. I guess I choose to use up my methylation capacity on olive leaf extract anyway because it helps my ACE +/+ gene significantly. However I am interested in improving my liver. Milk thistle does not bother me.
 

triffid113

Day of the Square Peg
Messages
831
Location
Michigan
The original protocol I came up with in the 90s was high in fruit (primarily citrus, ten pieces a day) and had four B complex, but it had many other things - I called it the shotgun effect. Each thing added something to the mix, but the cost was prohibitive. It however restored my energy, but did not remove my fatigue and I wound up developing severe symptoms including daily migraines. Since I was running out of money, I stopped.

There is a lot of LPS coming from the gut. Its first port of call is the liver. I would suggest one thing to do is to investigate what LPS does to phase 1 and phase 2 conjugation. Connecting liver damage to LPS damage would link liver metabolism to the immunological and metabolic problems found in CFS and ME.

Its entirely possible that high dose B vitamins might mask the problem in many of us. It is not so clear that its a cure. Its been done before, my old CFS doctor was doing this in the early 90s, in conjunction with many other treatments. He was the one who had patients eating two pieces of fruit before every meal, and more for snacks, plus B vitamins (though not as high as I finally took it). He had many improve, but very few were cured.

Do be sure to take methyl folate or folinic acid, not folic acid. Also be very careful with B6 dosage, its toxic in excess. So is GABA I think.

Bye, Alex
idk what LPS is? However I want to point out that if you think there is a viral component, that some viruses such as chagas disease, probably lyme, but potentially the ones you think you might have, use up B12 (they are consuming your B12 to survive leaving you short and thus replacing the B12 allows you to coexist). So yes in that case this would mask the problem but it beats not masking it IMHO.
 

triffid113

Day of the Square Peg
Messages
831
Location
Michigan
I haven't tried that b/c I've been afraid of developing peripheral neuropathies and the like from the high dose of B6. 25mg is the upper limit of what I feel comfortable taking anyway. Maybe there's an equivalent or better b-complex out there that doesn't have as much b6 and would allow for higher dosing. And not excessive B3, either, as too much tends to cause liver enzyme elevation in me.



Phase I supposedly was wiped out following a toxic exposure that only set the stage for the ME/CFS. I still had chronically worse fatigue then, but it wasn't like the actual ME/CFS, only some increased muscle tiredness and worse than normal fatigue after some excessive activity. I could still walk several miles per day w/out really much problem and close to normal recovery time, for example. Just felt more crappy than usual for a few hours or rest of the day following it.

The only real symptoms I noticed otherwise were related to just feeling super toxic. Don't think I was metabolizing much of anything at the time, and it was all making me really sick from the chemical sensitivities. That has greatly improved over the years, but the GSE incident was a few years ago, even, close to maybe 5-6 yrs or possibly more after the chemical injury. I thought the enzymes must have recovered more by then since the sensitivities were improved, but seeing as how I tested low for molybdenum even around a year ago, I can only assume they probably never really recovered.
fyi I take appx 60mg P5P every day (5 years). I have taken 310mg P5P for a month with no ill effects. idk if it is beause I am CBS +/+ but it did not improve my homocysteine over what I could achieve with the 60mg so I stuck with that. I seem to have noticed that extra P5P (110mg total) would stop anxiety/panic that I get if I try to lower my DHEA. The 60mg causes no liver problem as could be seen on a blood test. (That does not mean no liver problems as I observe less methylation capacity (less ability to tolerate niacin) in my 50's than I did when in my 20's, although I think it is because I am using up that capacity on 1g/day polyphenols (Olive Leaf Extract)). I don't think blood tests are the only way to judge your liver - but also by ability to tolerate substances requiring methylation.
 

jeffrez

Senior Member
Messages
1,112
Location
NY
How do y'all know what your phase 1 and phase 2 liver is doing? What tests for that?? I know my liver is not able to handle as much niacin as I used to be able to handle. I think it is because of the methylation protocol I am on or maybe taking 1 g. olive leaf extract (polyphenols) as the liver has to process all this. I guess I choose to use up my methylation capacity on olive leaf extract anyway because it helps my ACE +/+ gene significantly. However I am interested in improving my liver. Milk thistle does not bother me.


There are tests that measure the clearance and conjugation after challenging with substances like caffeine, tylenol, succinate, etc. Genova used to have one, but I don't know if they still offer it. I'd imagine there must be a place to get one somewhere, or possibly something even better.
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
Consistent with the title of this thread, I have been on the following protocol now for awhile. It has been helping and it is the main reason to my recovery:

Slow down phase 1
Speed up phase 2
Make more bile
Get rid of bile asap

This concept focuses on the liver only, you can recover with that.

undcvr -- could you explain in some detail how you addressed these issues? Thanks in advance. :)
 

Thinktank

Senior Member
Messages
1,640
Location
Europe
Interesting thread.
I have done MRI and CT studies of the whole abdomen + having a PET/CT scan tomorrow.
Findings showed multiple cysts and innumerable small bile duct hamartomas (cysts?? in the small bile ducts) called von meyenburg complex.
I believe the small cysts just a few mm in size are interfering with the bile flow or other enzymatic processes. Whenever i consume foods for a while that don't stress my liver i notice less inflammation and my tongue gets it's original color back which usually has a white coating.
This has decided me to do a liver flush sometime next week followed by enhancement of the liver detox phases.

Anyone here with polymorphims on CYP 450?
 

undcvr

Senior Member
Messages
822
Location
NYC
CFS is a paleo diet and absolutely no gluten or dairy
CFS is depression (Lithium, Methylfolate, NAC)
CFS is fatigue (B9 methylfolate, mb12, B6(P5P), B3(NADH), NAC)
CFS is pyroluria B6(P5P) 300-400mg. Zinc 300-400mg
CFS is methylation B9 methylfolate 60mg
CFS is a weak malfunctioning immune system/ autoimmune/inflammation (NAC, Vit D, DHEA, Omega 3s, Curcumin, GLA)
CFS is a weak liver detox (B vites, Artichoke, Pectin, Bioflavonoids, Fiber, NAC)
 

Asklipia

Senior Member
Messages
999
I did approximately 60 Liver Flushes in the course of the last 7 years together with my husband. After about 10 wz started to feel better. But we never felt cured.
And still every time we did a LF we found at least a couple handfuls of "stones".

This for me is clearly a sign that something is wrong with liver function in CFS.

However, when we did one LF two months ago, the first after about one year, there were absolutely no "stones" for either of us. We did this because we did feel cured and wanted to know if the flushes were still necessary. They are not anymore!
For the last year or so we were taking B2 and manganese (see my posts on the B2 I live you thread where I have kept regular information of what happened to us in detail http://forums.phoenixrising.me/index.php?threads/b2-i-love-you.15209/)
So I suppose this cured whatever was making our livers produce these stones.

Lots of information on the Liver Flushes here :
http://curezone.com/forums/f.asp?f=73
http://curezone.com/forums/f.asp?f=4
Look out for Telman's posts

Best
Asklipia
 

tyson oberle

Senior Member
Messages
210
Location
tampa, florida
CFS is a paleo diet and absolutely no gluten or dairy
CFS is depression (Lithium, Methylfolate, NAC)
CFS is fatigue (B9 methylfolate, mb12, B6(P5P), B3(NADH), NAC)
CFS is pyroluria B6(P5P) 300-400mg. Zinc 300-400mg
CFS is methylation B9 methylfolate 60mg
CFS is a weak malfunctioning immune system/ autoimmune/inflammation (NAC, Vit D, DHEA, Omega 3s, Curcumin, GLA)
CFS is a weak liver detox (B vites, Artichoke, Pectin, Bioflavonoids, Fiber, NAC)
I haven't had gluten or dairy (although I have experimented a few times with a little raw milk and raw yoghurt) in at least 4 years but it hasn't seemed to help. Paleo diet hasn't seemed to help much except that my teeth didn't hurt as they did from eating starches. When I went paleo in the beginning I had less bloating, but then I started to get bloating because I think it was because I started to eat a lot more animal fat with the meat. I have been vegetarian with no fruits for about 3 months and now I unfortunately have a little more gas even though the bloating is about the same. But what I like about my vegetarian diet is that I have less nasal congestion, a little less irritability, much better bowel movements and I have gained about 10 lbs. I am still very thin though. I may try paleo again but this time eating less animal fat.
My question is how would I know if I need lithium or NAC? Also, I never even heard of pyroluria, but I did a google search and I seem to have many of the symptoms, I am definitely going to look into that.