• 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.

Kidneys not doing well CBS/NOS genes.

Messages
11
It's been discovered that my kidneys are not doing well. I always thought it was my liver but kidneys are expressing a lot of symptoms right now. When I've had electro dermal screening done kidneys show up as a problem. Also sulfation, and ammonia keep coming up. I have some bad CBS genes and NOS genes. My heart beat is now weak, black under eyes, can't tolerate any supplements, and I'm retaining fluid. My back hurts really bad, sore tongue/mouth. Wondering what I can do to try to get my kidneys functioning again? Would Amy Yaskos CBS/NOS Kidney supprt be a good one for me to try? I need something fast. Please. Here are my genetic SNPs:


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 +\-

Thank you
 
Messages
11
Should I be ridding ammonia somehow? Should I be adding in Amy yaskos A1298C supplement to up my BH4 levels
 

Patrick*

Formerly PWCalvin
Messages
245
Location
California
Tizmo, I thought I was the only one. My kidneys have always been a problem since the very first day I came down with ME/CFS. They are like a barometer of my overall health - when my kidney pain flares up, my other symptoms follow shortly behind. My back is killing me as I write this.

Like you, I also have CBS and NOS issues. While I'm only heterozygous (+/-) for CBS A360A, I have confirmed through other tests that overmethylation is a problem. I have high blood ammonia levels and several other factors point toward overmethylation.

I've actually made an appointment to see a nephrologist this week to get more answers about exactly how my kidneys are affected. I've always had high creatinine, but the last nephrologist said I didn't need to worry about it. I'm getting a second opinion.

I can tell you that Yasko's RNA Kidney Inflammation Support did absolutely nothing for the kidney inflammation and pain, nor did the OraKidney supplement. While I'm still an overall believer in Yasko's methylation theory, I've come to believe through my research and experience that her RNA supplements are completely ineffective.

I'm sorry I don't have direct answers to your questions, as I'm currently trying to solve this riddle too. I'm in the middle of implementing Yasko's protocol, so I have some hope that I will improve after an initial decline (which I've recently experienced.)

If you learn anything about how to solve your kidney issues, please let me know. I will do that same.
 
Messages
5
Location
Chicago, Illinois
Tizmo, Have you tried optimizing your CBS pathway first? Its takes about 4-6 weeks to lower sulfur and ammonia levels in your body. You may have high taurine levels as well. First, put yourself on a low sulfur diet. Buy some yucca root powder and sprinkle about 3-5 g on any animal protein (e.g. chicken breast). Get some molybdenum, and take 50-75 mcg per day. Titrate up to 200 mcg per day. Dr Ben Lynch has a good product. You must lower your ammonia burden as its feeding into NOS, which is "broken"
 
Messages
5
Location
Chicago, Illinois
Hi Valentijn,
Yes, you are correct about the "minor" CBS SNP. Even without knowing his SNPs, and based on his clinical symptoms, I would have recommended the same thing. His transsulferation pathway is shunting into ammonia and likely taurine. The fact that there are CBS SNPs present tells me that they are in play, based on the ammonia and sulfur levels, and strain on the kidneys. NOS is adding to the back-up of ammonia, so BH4 is likely being depleted, and brain fog. There may also be a GI yeast burden, adding to the mix. As COMT is present, its best to get the transsulfuration pathway optimized before addressing MTHFR. Also, since BHMT is likely not allowing the conversion of homocysteine to methionine, I would add some sunflower lecithin (PC/PS) and or/some TMG. In order to take pressure off of the BHMT enzyme in the meantime, I would also add a bit of lithium oratate (1/4 of cap) with adensylcobalamin drops to assist B12 recycling due to the MTRR SNP. I am an Admin on MTHFRsupport, and work with SNPs and biomarkers of SNP pathways on a daily basis. We are holding a 2 1/2 day seminar, in Chicago, in mid-August, in order to teach others how to navigate through the maze of SNPs, and to use biomarkers to determine which SNPs are expressing. We use a 19 page Variance Report (generated from 23andMe results, run through Sterlings App at MTHFRsupport.com), that include SNPs beyond methylation (e.g., B12 and B9 transporter proteins, etc). Cynthia
 

Valentijn

Senior Member
Messages
15,786
The fact that there are CBS SNPs present tells me that they are in play, based on the ammonia and sulfur levels, and strain on the kidneys.
There's only one CBS SNP "in play" and it's a minor one. Maybe sulfur strips would be a nice way to test if there's actually a problem before spending months and money on a complicated treatment for a hypothetical problem?
 

caledonia

Senior Member
I'm hetero for the major CBS SNP, and the largest amount of B12 I could tolerate was 0.5mcg. I went through the CBS protocol (took 3 months), and things are much better now.

So from my experience, I would not discount a CBS C699T +/-. Granted, I also have several BHMTs, which are supposed to add to CBS problems, and Tizmo doesn't have that.

The Heartfixer has sulfur problems just from an A360A. I don't think this is very common, but it does happen.

I agree with getting some sulfur strips and seeing where sulfur levels are at first.

I also suggest reading the Heartfixer page (the link is in my signature below). He says something about lead causing hypertension and kidney disease. So I would get your metals tested too.

ps. once you start methyl supps and get methylation restarted, you will likely experience an extremely high need for potassium and/or magnesium. I've been reading recently that this can be a problem if you have kidney problems.