• 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.

Hello! I'm new ... and really confused.

Messages
2
Hello out there!

I'm confused about the CBS mutation... well actually I'm confused about the whole methylation protocol but I figured I'd trust my Dr. and give it a shot! In the past 6 weeks I've been on a low salicylate diet. while trying to learn more about the protocol, I've been reading more about people going on a low sulfur diet for the CBS mutation im (+/-). It seems to me that a lot of the food I've been able to eat on the low salicylate diet are high in sulfur.

I haven't noticed any change in my symptoms while on the diet, except a mild headache the a day after I ate food high in salicylates for the first time but I think the headache could have been from a number of different reasons. I've been suffering from brain fog, depression, anxiety, mood swings and low energy. I just went back for my check up and he suggested I try ashwagandha and phosphatidylserine for my brain fog and to slowly implement foods with salicylates back into my diet to see if I notice a difference.

Should I try a low sulfur diet? I'd love to hear your opinions, I'm lucky I came across this board, I thought I was hopeless in this subject matter.
 
Messages
97
There are many CBS genes, and I don't think all of them show up on testing. So a low sulfur diet is something one typically does on a trial basis.

Once all your systems are up and running properly, you can probably tolerate more sulfur-rich foods.
 

Critterina

Senior Member
Messages
1,238
Location
Arizona, USA
@hdizzizziditty ,

There are a lot of different opinions on the significance of the CBS mutations. The research (which is valid) has sometimes been misread to mean that the CBS mutations that occur in humans are equivalent to chopping off a huge part of the enzyme (which was done in the lab, but it's not the same thing.) So, just having the CBS mutations does not mean you should conclude that it's a "treat first" condition, as those who misread the research conclude. And, personally, I believe that some people do have sulfur issues, but they are probably not caused solely by the CBS mutations identified here. More likely they would be SUOX mutations or vitamin b6 deficiency or inability to activate B6 - but this is an uneducated guess at best.

So, regardless of CBS, the question is, "Do you have sulfur issues?" There are a couple of ways to go on this.

First, like @stevesayshi says, you can try a low-sulfur diet and see if it helps. I would wait on this until you do what you're doing with your doctor. OR talk to him/her and get an opinion as to whether to do this now. What I like about the low sulfur diet is that if there is any dietary component of your suffering, it's likely to give you relief. That does not mean that you have sulfur issues, though. It eliminates most of the things that cause people problems: dairy, gluten, gliaden, soy, meat, eggs, most vegetables, peanuts, etc. What it will tell you is that if you don't improve, the chances of there being a dietary component of your suffering are pretty slim. And that's about all I like about the low sulfur diet - it's a boring way to eat, even worse than histamine intolerance.

The second is to get sulfate and/or sulfite test strips. You test your urine and see whether your levels are high. It's normal to be in the 400-800 range when you are eating low sulfur, and have it go up when you eat high sulfur foods. It will cost you about $70 for both kinds online. Not easy to read, and if you're color blind, probably harder.

I'm liking your doctor and the low-salicylate diet. The fact that you did react when you ate a food high in salicylates indicates that you may be on the right track. Did your doctor check your cortisol? Phosphotidyl serine may lower cortisol. For many, that's a good thing. But if you're low in cortisol to begin with, it's really bad.

All the best to you! Expect some people to chime in who disagree with me. I respect them. I just disagree with them on this one matter.

Crit
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
My NP had me take molybdenum to lower my sulfur. She never put me on a low sulfur diet. I did that for a few months before starting methylation and she has kept me on it.
 
Messages
2
Thanks for all of your replies...

Critterina, my Doctor has not checked my cortisol levels, He just knows that I'm always a little anxious and have had full blown anxiety attacks in the past. My next lab is to check my ammonia, glutathione and homocysteine. For the next few days I'm going to implement more salicylates back into my diet to see if I notice any change.

Pretty tired today after eating more high sal foods yesterday and I running on about 6 hours of sleep. BLaaaH. Maybe it is effecting me or is it all just in my head? maybe just lack of sleep? ..... I'm losing my mind

minkeygirl - my Dr. talked to me aboutI molybdenum as well while doing the low sal diet but decided not to use it because I have Polycystic Kidney Disease and molybdenum creates more uric acid, something I have to watch out for.
 

Critterina

Senior Member
Messages
1,238
Location
Arizona, USA
@hdizzizziditty ,
Perhaps your doctor has good reason to think your cortisol is fine, but it wouldn't hurt to ask, as long as you're having tests done (between 8 and 10 am, that is.) Just a thought.
Crit
 
Back