• 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.

Need some serious advice please

Messages
11
I have been extremely ill. I've been having liver and kidney symptoms for a long time but recently really bad. Weak pulse, low back pain, dark circles under eyes, darker urine, fluid retention, extremely tired, etc. BUN/creatinine always high, liver enzymes going way up and then back down. Now I can no longer take any supplements, shortly after I do my liver starts burning and then shortly after my legs and arms swell and get extremely sore. It's like the liver cannot process anything. After being everywhere looking for answers I had electro dermal screening done and it showed my genes are a factor. It showed sulfation pathway, ammonia, b12, folate, SAMe, urea, taurine, and kidneys to all be a problem. My question is what in the world is going in? Why can't my liver process anything? Why am I unable to take supplements?

Also would my urea cycle and CBS genes benefit from orithine? Should I start on the MTHFR A1298C since I'm most likely completely depleted on BH4?

I had a Nutraeval test done last year and it showed low taurine, and low ammonia in urine so the whole CBS thing throws me off. Is mine active or do I move onto the next step?

Can a lack of vitamins literally make the liver unable to process supplements? Am I just this toxic that my body can't take anymore? I'm miserable and no one has any answers. Liver doctors/methylation doctors/Lyme doctors/naturopaths/homeopaths, etc no one seems to be able to figure this out. There has got to be a reason I got this bad after taking detox drops. It feels like it pulled a bunch of toxins and my liver was unable to excrete it.

Here are my mutations:


ACAT1-02 +\-
CBS A360A +\+
CBS C699T +\-
COMT V158M +\-
COMT H62H +\-
NOS rs1800783 +\+
NOS rs1800779 +\+
NOS1 rs3782206 +\-
NOS3 G10T +\+
NOS3 T786C +\+
MTRR A66G +\-
MTRR 11 A664A +\-
MTHFR 03 P39P +\-
MTHFR A1298C +\-
MTHFR A1572G +\-
MAO A R297R +\-
VDR Taq +\-
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I have been extremely ill. I've been having liver and kidney symptoms for a long time but recently really bad. Weak pulse, low back pain, dark circles under eyes, darker urine, fluid retention, extremely tired, etc. BUN/creatinine always high, liver enzymes going way up and then back down. Now I can no longer take any supplements, shortly after I do my liver starts burning and then shortly after my legs and arms swell and get extremely sore. It's like the liver cannot process anything. After being everywhere looking for answers I had electro dermal screening done and it showed my genes are a factor. It showed sulfation pathway, ammonia, b12, folate, SAMe, urea, taurine, and kidneys to all be a problem. My question is what in the world is going in? Why can't my liver process anything? Why am I unable to take supplements?

Also would my urea cycle and CBS genes benefit from orithine? Should I start on the MTHFR A1298C since I'm most likely completely depleted on BH4?

I had a Nutraeval test done last year and it showed low taurine, and low ammonia in urine so the whole CBS thing throws me off. Is mine active or do I move onto the next step?

Can a lack of vitamins literally make the liver unable to process supplements? Am I just this toxic that my body can't take anymore? I'm miserable and no one has any answers. Liver doctors/methylation doctors/Lyme doctors/naturopaths/homeopaths, etc no one seems to be able to figure this out. There has got to be a reason I got this bad after taking detox drops. It feels like it pulled a bunch of toxins and my liver was unable to excrete it.

Here are my mutations:


ACAT1-02 +\-
CBS A360A +\+
CBS C699T +\-
COMT V158M +\-
COMT H62H +\-
NOS rs1800783 +\+
NOS rs1800779 +\+
NOS1 rs3782206 +\-
NOS3 G10T +\+
NOS3 T786C +\+
MTRR A66G +\-
MTRR 11 A664A +\-
MTHFR 03 P39P +\-
MTHFR A1298C +\-
MTHFR A1572G +\-
MAO A R297R +\-
VDR Taq +\-

Hi Tizmo,

What are "detox drops". Sounds like they are awful for a person. What exactly happened when and after you took them. What were the reactions and how dis they proceed?
 

Jarod

Senior Member
Messages
784
Location
planet earth
Hi there,

I'm reluctant to give any advice because I'm sick myself and only have personal experience. However, what you are describing with these detox drops has caught my attention.

I've noticed GI problems(my situation could have been liver or gallbladder....) when my minerals get low.

I'm wondering if the detox drops have something that chelates minerals? I know some detox drop contain zeolite, or chorella etc that can chelate minerals.

In the past I've been able to gradually supplement certain minerals I'm familiar with and how they work in my body and recover from those low mineral situations. Sounds like you have more going on though than just minerals.

Sounds like you need a extremely careful approach and that may not work for you.

You said you have lyme, I have lyme too and sometimes respond to doxycycline when having liver and GI issues. Is this something you considered with your docs?

I was pretty weak one time and doxycycline pulled me back from the brink. Not sure exactly what was going on and how that compares to your situation though. Doxycycline treats more than just bacteria. It can work on parasites and other stuff too.
 

caledonia

Senior Member
You have to start with treating ACAT. This is likely behind your kidney problems. I'm not sure if that one is affecting the liver. That is more likely low glutathione.

Whether or not CBS is activated, you have a bunch of NOS mutations which affect sulfur metabolism. I would for sure add some molybdenum and/or other sulfur support. CBS may not be showing up yet because you haven't "filled up the bathtub" with metabolites, therefore nothing is showing up in the "drain".

Have you done the urine sulfate test strips? What does glutathione read on your Nutreval test? How is your gut looking on the Nutreval? Metals?

Note: you can get a much better interpretation of Nutreval by using the Nutreval Interpretation Guide (link in my signature below).
 

adreno

PR activist
Messages
4,841
Have you had your cortisol levels checked? Your symptoms sound almost like Addison's.
 
Messages
11
I had adrenal spit test done, showed normal. How does one address ACAT? You never really here how to address it only the other SNPs. My gut on the Nutreval is bad I've done everything to "heal" it but it just gets worse the more toxic I get. I was on antibiotics for Lyme it's done nothing. I've just gotten more and more toxic over time and now finally my kidneys and liver are taking the hit hard. I will check the Nutraeval link thank you.
 

Marlène

Senior Member
Messages
443
Location
Edegem, Belgium
Under the supervision of a doctor you could consider

1) A liver detox. Please google Andreas Moriz or buy his book. It is rather easy to do and it worked very well for me.
You'll have to change the magnesium as indicated in the book because you seem to have problems with sulfate too.

2) Phytotherapy: These herbs feed, keep the liver vital and help improve its functions. You can mix them, make tee for 10 days. Do this twice a year or when very ill.​
1. Taraxacum officinale​
2. Symphytum officinale​
3. Glycyrrhiza glabra​
4. Agrimonia eupatoria​
5. Dioscorea villosa​
6. Berberis vulgaris​
7. Helleborus foetidus​
8. Quercus alba​
9. Silybum marianum​
3) A tip I saved from Carolyn Dean MD ND​
A concoction of clay and castor oil to be used as a poultice.​
It’s a simple recipe. Using a fork, mix clay and castor oil together in a bowl. You can start with 4-6 TBSP of each and add more clay to create a cookie dough consistency. Put the mixture on a small washcloth and place over areas with lots of lymph nodes: breasts, liver, armpits, groin and according to the condition you want to treat.
Use first aid tape to attach the washcloth to your body to keep it in place. Tape a plastic bag on top to keep the castor oil from oozing out onto your clothes.
Clay packs are indicated for inflammation with signs of swelling, redness and heat around the affected joint or boil. Clay draws toxins out through the skin into the clay. Use one time and then discard.
Castor oil packs increase circulation to an area and stimulate the lymphatic system to mobilize toxins aiding in detoxification. They are excellent for organ pain, especially of the liver, pancreas and kidneys and help relieve muscle spasms.
If interested, consider: Heritage castor oil and LL's magnetic clay

4) Coffee enemas, they detox the liver as well. Start gentle with "light" coffee.
All the best.
 

Jarod

Senior Member
Messages
784
Location
planet earth
Not sure if anybody mentioned, but dry saunas can help with detox.

The skin in the largest organ in the body. If your liver is not working well sweating can be a way to "detox" without using the liver. It works enough that I can feel it.

I think "Wayne" does clay foot baths for detox, he probably has some good posts on that.

Not a magic bullet, but it may be enough to provide a little relief.
 

Beyond

Juice Me Up, Scotty!!!
Messages
1,122
Location
Murcia, Spain
Marlene already outlined what I was going to advice! I strongly reccomend for liver trouble the following:

-Coffee enemas. You will see and... smell how obvious its that they detox the liver. Start daily and gradually make them more scarce. I do them now monthly or so but when I started I needed it everyday. They can give you a high as well, and drinking coffee never gave me a "good" high.

-Liver flushes curezone style or the milder version of juicing lemons/limes (with skin and all) with a tablespoon of olive oil first thing in the morning. This concoction can be upgraded with the following: carrot juice, beet juice, ginger, turmeric, garlic juice, apple juice, grapefruit juice, flaxseed oil. I had a detox headache and more fatigue for 6 hours after drinking all that at once, had to lie down in the bed. Its the strongest and more evident detox I ever had. The same beverage taken later didnt have the same effect. Overall my experience its that juicing vegetables its by far the most effective health boosting home remedy, go for it.

- I never really had bad liver problems so never needed herbs but they are scientifically proven to help the liver and those written are very appropiate as far as I know.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I have been extremely ill. I've been having liver and kidney symptoms for a long time but recently really bad. Weak pulse, low back pain, dark circles under eyes, darker urine, fluid retention, extremely tired, etc. BUN/creatinine always high, liver enzymes going way up and then back down. Now I can no longer take any supplements, shortly after I do my liver starts burning and then shortly after my legs and arms swell and get extremely sore. It's like the liver cannot process anything. After being everywhere looking for answers I had electro dermal screening done and it showed my genes are a factor. It showed sulfation pathway, ammonia, b12, folate, SAMe, urea, taurine, and kidneys to all be a problem. My question is what in the world is going in? Why can't my liver process anything? Why am I unable to take supplements?

Also would my urea cycle and CBS genes benefit from orithine? Should I start on the MTHFR A1298C since I'm most likely completely depleted on BH4?

I had a Nutraeval test done last year and it showed low taurine, and low ammonia in urine so the whole CBS thing throws me off. Is mine active or do I move onto the next step?

Can a lack of vitamins literally make the liver unable to process supplements? Am I just this toxic that my body can't take anymore? I'm miserable and no one has any answers. Liver doctors/methylation doctors/Lyme doctors/naturopaths/homeopaths, etc no one seems to be able to figure this out. There has got to be a reason I got this bad after taking detox drops. It feels like it pulled a bunch of toxins and my liver was unable to excrete it.

Here are my mutations:


ACAT1-02 +\-
CBS A360A +\+
CBS C699T +\-
COMT V158M +\-
COMT H62H +\-
NOS rs1800783 +\+
NOS rs1800779 +\+
NOS1 rs3782206 +\-
NOS3 G10T +\+
NOS3 T786C +\+
MTRR A66G +\-
MTRR 11 A664A +\-
MTHFR 03 P39P +\-
MTHFR A1298C +\-
MTHFR A1572G +\-
MAO A R297R +\-
VDR Taq +\-

Hi Tizmo,

SAM-e is supposed to help with Liver. MeCbl combines with and removes many toxins and is destroyed in the process. Lacking Sufficient MeCbl and AdoCbl can cause over 600 biochemical reactions to not happen affecting every system of the body. It is essential along with methylfolate to make cells and heal. I would stop the "detox drops" if not already and then get going on getting the body set up to heal. Without enough of the Deadlock Quartet (or things that end up as such) NOTHING else can help. There is no replacement for b12 and folate and l-carnitine fumarate for those appearing unable to make it from amino acids. The liver has and uses about half of the body's entire supply of b12, necessary to do all the detoxing and ATP generation needed for it's very functioning. When the body is starved of b12 so is the liver. When the liver cells start breaking down it releases it's working b12 into the body and gives a weirdly high b12 level with massive b12 deficiency symptoms..