Rich------Suggestions for CBS Mutation

HI Rich, I saw somewhere that you said you do not recommend low protein for CBS mutation. My doc has recommended that for me and I have not done it as I don't have anything else to eat. She also said to use yucca, but that causes leaky gut. What would your recommendations be? Here are my snips and Health Diagnostics tests. Thank you.

Here is my first test:

I did Health Diagnostics test: March 2012
Gutathione oxidized .51 range .16-.50
Glutathione redued 3.3 range 3.8-5.5
s-adenosylmethionine 237 range 221-256
s-adensoylhomocysteiine 56.8 range 38-49
folic acid derviates
5-CH3-THF 15.0 range 8.4-72.6
10-Formyl-THF 4.3 range 1.5-8.2
5-Formyl-THF 4.90 range 1.2-11.70
THF 1.15 range 06-6.80
Folic Acid 18.5 range 8.9-24.6
Folic Acid (WB) 17-3 range 9.0-.35.5
Folic Aci active RBC 417 range 400-1500
ACE -Not available
CBS A360 -/-
CBS C699T +/-
COMT H62H -/-
Comt V158M -/-
COMT L136L
COMT-61 -/-
MOA A +/+
MTHFR C677T +/-
MTHFR A1298C -/-
MTHFR 03 P39P -/-
MTR A2756G -/-
MTRR H595Y -/-
Mtrr K350A -/-
MTRR R415T -/-
MTRR S257T not available
MTRR A919G -/+
MTRR-11 A664A +/-
NOS 3 not available
SOUX S370S not available
SOUX A628G not available
VDR BSM TAQ -/-
VDR Fok not available
ACAT1-02 -/-
AHCY-01 -/-
AHCY-02 -/-
AHCY-19 -/-
BHMT-01 not available
BHMT -02 -/-
BHMT -04 -/-
BHMT-08 -/+
SHMT C1420T -/-

What is your source for yucca causing leaky gut? The only thing I can find is that it helps heal leaky gut.....

Just curious, is that 23andMe results converted to yasko? How did you do it?

I did convert it what a chart that is on the genetic thread. Here is an aticle about saponins that lead to leaky gut. My doctor said it is such a small amount that we should be fine as I have a clean diet otherwise. http://www.meandmydiabetes.com/2011/12/03/loren-cordain-leaky-gut-whole-grain-and-even-potatoes/

bump

Do you feel the 23andme was worth the money and effort (converting to Yasko)? I am thinking about the 23andme but concerned about being able to interpret results.

It was not hard to convert. I am glad I did it and didn't have to wait 12 weeks for Yasko. I am on the road to getting this fixed.

Hi, Fresh.

The CBS SNP does not seem to be impacting your methylation cycle. Your SAMe level is normal, and your SAH is high. Your glutathione is depleted. All of this suggests that you have low flow into your transsulfuration pathway, rather than high flow, as the CBS SNPs tend to give a person. My guess is that you are low in vitamin B6 and/or B2, so a
B-complex should help you. You may also need some magnesium. I would suggest adding these to the simplified methylation protocol. I would not recommend lowering your protein intake. It is about the only fuel many PWCs can burn, becuase of a partial block early in the Krebs cycle, due to glutathione depletion, which you have. I haven't heard that Yucca causes leaky gut. I wonder if there is a reference for that.

Best regards,

Rich

Thank you Rich for the explanations. I really appreciate this as I try to walk through this to better health and hopefully better sleep. I do not have the data on yucca. I will have to find that.

Hi Rich. I'm curious what specifically about FV's panel made you think that CBS was not an impact. The reason I ask is I have a similar results (ok SAMe, low glutathoine). I'm trying to learn as much about the various "levers" in the pathways since I'll be stuck trying to manage this for life. I know I'll never understand it like you do, but I at least need to try to grasp the basics....

In your estimation what conclusions can you draw about the rate of the CBS by measuing urine sulfite and sulfate? I'm sure it is better, but when/why would someone choose to do the amino acid urine panel?

Any thoughts on the "best" ways to raise glutathoine?

My panel results are here:
http://forums.phoenixrising.me/index.php?threads/help-with-methlyation-panel.18285/

Thanks!

Hi, loring.

Sorry that I didn't give you comments on your methylation pathways panel earlier. I'm not able to keep up very well.

The CBS SNPs that Dr. Yasko characterizes increase the activity of the CBS enzyme. That tends to cause a greater flow of homocysteine into the transsulfuration pathway, draining the metabolites from the methylation cycle. Dr. Yasko used to use a bathtub analogy to explain this.

The SNPs only give tendencies. They don't tell you what is actually happening in the person's biochemistry. FV's results on these two panels together are a good example of why I favor running the methylation pathways panel. She does have a heterozygous SNP on one of the CBS genes, but it is clear from her SAMe plus SAH concentrations that her methylation cycle has not been drained. The same appears to be true of yours.

The CBS enzyme requires activated B6 (P5P) for its operation. If B6 (or B2, needed to convert it to P5P) are low, this will inhibit the CBS reaction, and possibly also the CTH reaction (which also needs P5P), which is the other one in the transsulfuration pathway. If these are deficient, there will be low flow through transsulfuration, even if there are CBS SNPs.

It is necessary to have good flow down the transsulfuration pathway to make cysteine. About half the body's cysteine is normally made this way. Cysteine is usually the rate-limiting amino acid for making glutathione. So low flow into transsulfuration is consistent with inability to maintain a normal glutathione level.

I find it difficult to tell what's going on in transsulfuration from the sulfite or sulfate levels alone. Many PWMEs have depleted methionine. This is what feeds the entire sulfur metabolism, starting with the methylation cycle, into the transsulfuration pathway, sulfite and sulfate. So the levels of sulfite and sulfate will depend on other factors, which can vary.

To get the whole picture of what's going on in the sulfur metabolism, it's best to run both the methylation pathways panel and a 40 plasma amino acids panel. Having sulfite and sulfate levels will help to round out the picture. But one can tell a lot from the methylation pathways panel alone.

The best way to raise glutathione in ME/CFS is to treat to lift the partial methylation cycle block, using methylfolate and B12 (I prefer sublingual hydroxo B12, at least to start with), adding general supplementation of other vitamins and minerals to take care of deficiencies, and also adding support for the lipid membranes, which have been damaged by oxidative stress. This is what the simplified methylation protocol is designed to do. Direct boosting of glutathione is not a permanent fix for low glutathione in ME/CFS.

Best regards,

Rich

Thank you Rich - that was informative. I'm sure it is difficult to repeat the same information over and over. It is a shame there isn't an easy way to organize all the information that has been exchanged on this forum!!

I'm getting methlyfolate (Metafolin) and mB12 in two forms - supplement with co-factors including 5P5 and a transdermal cream. So I'm thinking that should help with my methlyation block.

Odd question for you - It was recommended that I take NAC to boost glutathione production in addition to the methlyation suppls. Have you ever heard NAC causing joint swelling and pain? Every time I try to start up on it, it feels like there are tiny little needles in the joints of my hands and feet. Ok maybe not needles literally, but kind of like that. Could that indicate an issue with a different pathway not functioning well?

Hi, loring.

You're welcome.

Sounds as though you are taking some good things. It's important to get enough B12 into the bloodstream to overcome the B12 functional deficiency. Usually this is done sublingually or by injection, but perhaps the transdermal cream will put enough in. Oral supplements are not able to contribute much, because the absorption is very limited from oral B12 supplements. On the simplified methylation protocol, I suggest 2,000 micrograms sublingual hydroxocobalamin per day.
P5P by itself will not put P5P into the cells, because the phosphate is removed from it in the gut, and then the liver puts the phosphate back on, if it has enough B2. Then it goes into the blood, and the phosphate is removed again before it enters the cells. Then, if the cells have enough B2, they put the phosphate back on again, so that there is P5P inside the cells, and then it can serve as a coenzyme.

I don't know why NAC would cause joint swelling and pain. Perhaps it is boosting glutathione, and that is helping the immune system to function better, and it is going after a pathogen that is in your joints. Is it possible that you have Lyme disease? The Borrelia bacteria like to go to the joints.

Best regards,

Rich

Again, thanks for the great advice. You gave me a brain cramp with your explaination on 5P5. I love it. The body is so complicated - which is amazing and wonderful when things are all working the way they ought to.

On Lyme - I've never been tested. Something to look into I suppose. I think the reaction to NAC is strange too, but I'm not going to stess over it. I'll stay focused on the methlyation supplements first and hope that that raises my glutathione.

I also wonder about the other CBS enzymes that no one seems to test for. My dad had dementia and my doctor said it just wasn't the MTHFR, APOE, and the typical methylation genes you had to worry about since there's also a CBS down reg that keeps some nutrients and toxic stuff trapped. When people have the CBS 699 but have normal levels like Dr. Vank outlined up above, I wonder how we can tell its not something like this? Like maybe they're sorta offsetting each other?

I just had my follow up today and it got me thinking more. This is another situation where I'd wonder if its really not that the CBS isn't a problem but just a combo of the defects. I noticed that there isn't a A1298c defect and there's no super bad MTR/MTRR defects that would really drop SAM more. I wonder how many of the really sick PWCs have the MAT, MTRR, AHCY, or MTHFR A1298C defects that explain why they're so sick and also why things like SAM are normal.

I'm not sure how it would all play out with this mix but I know as an example, an AHCY will hide a CBS upregulation. My methylation panel was so different later from when I first had it checked it was amazing. But once I started methylation support, it all changed and my taurine went sky high too. But then, I have a complete CBS with all of the AHCY and BHMT defects so things can hide and come out later. I was really glad I didn't have just the chemistry panel done though so if you can afford to do both, I definitely would do that.

HI Greenshots. Did you do a metylation panel and a UAA test? Are you working with the doctor from CA? Just didn't want to advertise the web site. Do you have any resources on foods to eat while working on a CBS & BHMT defect? My doctor still feels that I have a partial block in the beginning and wants to start there along with mb12 and methylfolate.

yes, I did the urine aminos and the urine MAP which are organic acids.

I tried to start those methyls early on but didn't do well. For me, it wasn't until I got the complete CBS under better control that things got better. I used the CBS RNA and minor supports in the beginning. She tweaked things later as I could handle them. I was completely bedridden and landed in the ICU when a friend called her to treat me. But then, I don't have the ACAT or SHMT either and those two are bigger issues to deal with then the CBS. I would be leery about guessing what your blocks are and then treating them. If you can afford even one of the gene tests, I'd get it done.

HI Greenshots. Sounds like you have come along way. Good for you. My snips are at the first post on this thread. My doc wants to treat the CBS and BHMT first. I am struggling with the diet and just need some things to eat. I have been eating coconut manna and nuts for lunch and breakfast with a cucumber. Then dinner I eat some protein with summer squash and some ghee. I just don't have much variety. Do you have any suggestions? I noticed your doctor has a link for that but hasn't added it to the web site yet. Also, my doctor had me get the ammonia RNA.

Thankfully I don't have ACAT or SHMT.

Sorry, I had it in my brain that those were just the methylation labs for some reason. My doc used to have the sulfur stuff up which is where I got this site but since then, Dr. Cutler wrote a book and it was copyrighted so she had to take it down. This site explains the sulfur issue better. As for protein, I'm a vegetarian so get alotta protein from high fiber, dense veggies but I eat an egg a day and some quinoa. If you get creative, you can have some variety like quinoa chowder or a little egg fried basmati rice with veggies so that you get protein and variety without too much sulfur or ammonia. I like that kind of stuff because I make huge pots up and freeze it in baggies or canning jars for some quick meals.

And yes, I sure have come a long way! Life two years ago wasn't worth living and now I'm going camping with my family for the 2nd time this month!

http://livingnetwork.co.za/chelationnetwork/food/high-sulfur-sulphur-food-list/

HI Greenshots, thank you. I have looked at this and showed it to my doctor and she thought it made sense. So your doctor used this list of low thiol foods to get better and not per say just low sulfur foods? This is good to know as I have not been able to find a definite answer. Do you think that there maybe are foods missing on the low thiol foods that we can still eat. Like more fuit?

I don't eat much fruit, but I was thinking since it is low in sulfur I might make a meal of it. I am not vegetarian so it is seeming so hard to come up with a meal that won't make me hungry later. I have been off eggs for some time as they came back high on my delayed food allergy test. What is your opinion about nuts? I have been using them too. I just don't know how low I have to go to ge the job done. I have been doing 3 oz of fish protein a day to get some protein in me along with some summer squash. The other 2 meals, I each coconut manna--just cocontu meat. It is very tasty and I add in some nut butter or just nuts and that is my other 2 meals. I am not sure if I am getting low enough becuase of the nuts.

I am definetly tired of what I am eating. I would like to go more veggies, but I really don't know how to put it together. Can you give me some options? I am worried about losing what little muscle tone I have. We have been an allergy free house since my oldest was born 15 years ago. So I don't use any gluten, dairy or peanuts. Before starting CBS, I only ate veggies, meat and fat. Now I am so lost.
What other options besides summer squash and a little bit of green/red pepper do I have?

I also am worried about veggies in the winter months---Not sure what I can eat then--they say squash.

I appreciate your feedback and it means a lot since you are doing so well. It seems like an abscure problems to have and not much info on the internet.

Can't imagine being able to go camping. That is a success story for sure.