• 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 (FM), 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.

Test strips for CBS mutation

Messages
54
Location
Montreal, Canada
Which ones to get to get the best indication of CBS upregulation..... is it SulphATE or SulphITE strips ? I can get both by Quantofix on Amazon.com. But don't really understand the difference.
 

triffid113

Day of the Square Peg
Messages
831
Location
Michigan
idk, I never did it. I am CBS +/+. I just look at homocysteine and if it's good, my protocol is doing its job. I wonder if using those strips will provide better control because of more frequent measurements? I would not trust them alone (w/o a SAMe or homocysteine measurement), but it might be useful inbetween. I have never really considered spending the money on the strips. Please report back on how they help you.

this websiote (my doctor) says to use the sulfATE test strips: http://www.heartfixer.com/AMRI-Outcomes-Non-CV-Autism-Methyl Cycle.htm#CBS: Cystathione Beta Synthase
 

triffid113

Day of the Square Peg
Messages
831
Location
Michigan
http://www.heartfixer.com/AMRI-Nutrigenomics.htm

Sulfite is neurotoxic. Sulfite will be over produced by the CBS up regulation, and then requires conversion in to the less toxic sulfate molecule by the enzyme Sulfite Oxidase (SUOX). SUOX can easily be overwhelmed. Molybdenum is required for SUOX function, and is typically depleted in CBS (+/+) or (+/-) individuals. Molybdenum supplementation (3 drops or 75 mcg of e-lyte Molybdenum twice a day), Boron 3 mg/day, Vitamin E succinate 400 IU/day, and hydroxy-B12 2000 mcg/day are also utilized to speed up SUOX activity.

While sulfate is less toxic than is sulfite, it will stimulate the adrenergic (fight or flight) limb of the autonomic nervous system and stimulate a cortisol stress response, revving you up into an unrelenting biochemical overdrive. If you have a CBS defect, we need to restrict your sulfur intake, at least until your urine sulfate (and your body sulfate burden) has decreased. The amino acids methionine, taurine, and cysteine all contain sulfur; they are concentrated in animal protein (thus the restriction on animal protein intake). Many nutritional supplements (MSM, N-acetyl cysteine, glutathione) that are good for most people are a problem for you. While certain aspects of your health will benefit from these agents, they will add to your sulfate/sulfite overload problem, adversely affecting the Methyl Cycle Defect that is the common denominator to all of your health problems

---

idk about all this sh*t above. I have a CBS +/+ and a CBS +/- and yet I have HIGH molybdenum.

I require high DHEA or else I get panic attacks (due to cortisol higher than the proper DHEA:cortisol level which governs how much stress one can take). However during allergy season (50% of my life) I am low cortisol and I need DHEA to be able to make cortisol...my adrenal gland craps out from insufficient zinc leading to insufficient thyroxine, etc). So I don't know what to say about cortisol since mine is all over teh map depending on whatever else is going on.

It seems to me that the one to worry about is SULFITE as it is the one that is toxic. If you have no SUOX defect and no molybdenum shortage, your body will turn it into SULFATE, whose only problem is raising cortisol. Ok, maybe that is a problem if you don't have enough testosterone (via DHEA) to regulate CBS, but that is how I regulate my CBS. I guess it could be interesting to test.

I don't guess I have any SULFITE problem due to none of the issues that would block its conversion to SULFATE so the only useful thing would be to test SULFATE. Actually it would be interesting if they sold ONE sulfite test strip with the sulfate test strips just to be sure about the sulfite.
 

dbkita

Senior Member
Messages
655
Which ones to get to get the best indication of CBS upregulation..... is it SulphATE or SulphITE strips ? I can get both by Quantofix on Amazon.com. But don't really understand the difference.
The Quantofix work great for me. They have helped to me to get a better understanding of what things I eat affect my sulfate status which correlates with ammonia production. The surprise for me was there was less impact than I thought from protein (though there is of course some) but there is also quite a bit from thiol rich foods and the amount of mb12 I take.

For me ammonia is the one that I have to watch out for since it affects inflammation and pain and lowers BH4. I seem to have my sulfites well in hand with molybdenum supplements.

If you get a chance getting a baseline 24 hour urine sulfate may be useful also.
 
Messages
54
Location
Montreal, Canada
The Quantofix work great for me. They have helped to me to get a better understanding of what things I eat affect my sulfate status which correlates with ammonia production. The surprise for me was there was less impact than I thought from protein (though there is of course some) but there is also quite a bit from thiol rich foods and the amount of mb12 I take.

For me ammonia is the one that I have to watch out for since it affects inflammation and pain and lowers BH4. I seem to have my sulfites well in hand with molybdenum supplements.

If you get a chance getting a baseline 24 hour urine sulfate may be useful also.
So, you use the SulphATE strips, do you? Or do you use the SulphITE strips as well?
Are these two different pathways?
 

dbkita

Senior Member
Messages
655
So, you use the SulphATE strips, do you? Or do you use the SulphITE strips as well?
Are these two different pathways?
Sorry I should have made is more clear. I use the sulphate strips. The sulfite strips are part of similar pathway but there levels will be affected by SUOX / molybdenum capability. Sulfites are toxic, sulfates are not. But sulfates are probably a better indicator of trans-sulfuration activity. The sulfite strips are to measure if you have issues with sulfite processing.
 
Messages
54
Location
Montreal, Canada
Sorry I should have made is more clear. I use the sulphate strips. The sulfite strips are part of similar pathway but there levels will be affected by SUOX / molybdenum capability. Sulfites are toxic, sulfates are not. But sulfates are probably a better indicator of trans-sulfuration activity. The sulfite strips are to measure if you have issues with sulfite processing.
So the SulphITE strips only measure halfway along the pathway....and so you the SulphATE as well?
 

xjhuez

Senior Member
Messages
175
It's unfortunate that these strips aren't sold in packs less than 100. Even if you tested twice a month you'd only need 2 dozen annually. Maybe a few of us could go in on these?
 

Patrick*

Formerly PWCalvin
Messages
245
Location
California
Which ones to get to get the best indication of CBS upregulation..... is it SulphATE or SulphITE strips ? I can get both by Quantofix on Amazon.com. But don't really understand the difference.

I just recently started using these from Amazon. My only complaint is that they're not very specific. You can guess at a general range, but it's hard to pointpoint it just based on color-matching the strips to the examples on the bottle.

Mine appears to be in the 600-800 range.
 

Patrick*

Formerly PWCalvin
Messages
245
Location
California
idk, I never did it. I am CBS +/+. I just look at homocysteine and if it's good, my protocol is doing its job. I wonder if using those strips will provide better control because of more frequent measurements? I would not trust them alone (w/o a SAMe or homocysteine measurement), but it might be useful inbetween. I have never really considered spending the money on the strips. Please report back on how they help you.

this websiote (my doctor) says to use the sulfATE test strips: http://www.heartfixer.com/AMRI-Outcomes-Non-CV-Autism-Methyl Cycle.htm#CBS: Cystathione Beta Synthase

I am +/- for CBS A360A and the other CBS's are negative. So I'm not clear if CBS up regulation is an issue for me. My homocysteine last measured 9.1, which is definitely within range (<11.4). But SAMe is low at 207 (range is 221-2560). Urine sulfate appears to be about 700.

Does this suggest that I do NOT have CBS up regulation? Or maybe just a little?

I'm just starting Yakso's protocol and would like to skip the CBS portion and move on if it's not necessary, but want to err on the side of caution if there's a chance. Would appreciate your thoughts...
 

dbkita

Senior Member
Messages
655
It's unfortunate that these strips aren't sold in packs less than 100. Even if you tested twice a month you'd only need 2 dozen annually. Maybe a few of us could go in on these?
They are pretty cheap. I learned a lot by testing every night for like two months and recording what was different from day to day. Made sure to measure same time at night and it showed me some patterns.
 

dbkita

Senior Member
Messages
655
I just recently started using these from Amazon. My only complaint is that they're not very specific. You can guess at a general range, but it's hard to pointpoint it just based on color-matching the strips to the examples on the bottle.

Mine appears to be in the 600-800 range.
All the sulfate test strip brands are like that.
 

triffid113

Day of the Square Peg
Messages
831
Location
Michigan
I am +/- for CBS A360A and the other CBS's are negative. So I'm not clear if CBS up regulation is an issue for me. My homocysteine last measured 9.1, which is definitely within range (<11.4). But SAMe is low at 207 (range is 221-2560). Urine sulfate appears to be about 700.

Does this suggest that I do NOT have CBS up regulation? Or maybe just a little?

I'm just starting Yakso's protocol and would like to skip the CBS portion and move on if it's not necessary, but want to err on the side of caution if there's a chance. Would appreciate your thoughts...
Normal homocysteine is 6.3. (See www.lef.org) The lab reference ranges remember are not based on science so ignore them. You can get homocysteine measured by http://www.lef.org/Vitamins-Supplements/Blood-Tests/Blood-Tests.htm If you are a member the test is $64. I like to get my tests from LEF because then I can phone their doctors to discuss my results. However if you want to get it elsewhere you can try http://www.directlabs.com/ (they charge $79)

So you need to experiment with supplements to recycle homocysteine to SAMe such as mfolate, mB12 and TMG. Then see if you need to do anything for CBS. IMHO
 

xjhuez

Senior Member
Messages
175
They are pretty cheap. I learned a lot by testing every night for like two months and recording what was different from day to day. Made sure to measure same time at night and it showed me some patterns.

If you know you need them, sure. I might seem stingy, but I have to watch what I spend on supps. Plus seems wasteful to buy 100 only to find that my CBS isn't expressed and then I don't need the next 99. It's different with supplements because where I purchase them has a great return policy. I'd rather paypal someone $5 to send me a few in the mail - mitigates their cost and my risk.
 

Patrick*

Formerly PWCalvin
Messages
245
Location
California
Normal homocysteine is 6.3. (See www.lef.org) The lab reference ranges remember are not based on science so ignore them. You can get homocysteine measured by http://www.lef.org/Vitamins-Supplements/Blood-Tests/Blood-Tests.htm If you are a member the test is $64. I like to get my tests from LEF because then I can phone their doctors to discuss my results. However if you want to get it elsewhere you can try http://www.directlabs.com/ (they charge $79)

So you need to experiment with supplements to recycle homocysteine to SAMe such as mfolate, mB12 and TMG. Then see if you need to do anything for CBS. IMHO

That's good information. Thank you for responding.

My understanding from Yasko's book was that CBS is a "first priority mutation" because, until addressed, B12, mfolate and other supplements will go right back out the "CBS gate." You seem to be suggesting a reverse order. Is there a school of thought that disagrees with Yakso's CBS gate theory? Do you think she's too rigid in her strict adherence to a step-by-step approach?
 

invisiblejungle

Senior Member
Messages
228
Location
Chicago suburbs
My understanding from Yakso's book was that CBS is a "first priority mutation" because, until addressed, B12, mfolate and other supplements will go right back out the "CBS gate." You seem to be suggesting a reverse order. Is there a school of thought that disagrees with Yakso's CBS gate theory? Do you think she's too rigid in her strict adherence to a step-by-step approach?

I'm still trying to figure out the CBS issue because many people disagree with Yasko. I joined the Low-Oxalates Yahoo group, even though I don't have an issue with oxalates, because I heard that the moderator Susan Owens has a lot of good info. She claims that Yasko's theory isn't backed up by the agreed-upon science regarding sulfur. Supposedly she sees autistic children end up with muscle wasting (indicated by high 3-methylhistidine on organic acids tests) due to sulfur restriction, as the body will catabolize muscle if it needs sulfur.

According to Rich VanK's study with Dr. Nathan, CBS issues can be resolved without addressing CBS directly (since the patients in the study did the simplified protocol without genetic testing). So I dunno... :confused:
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
I'm still trying to figure out the CBS issue because many people disagree with Yasko. I joined the Low-Oxalates Yahoo group, even though I don't have an issue with oxalates, because I heard that the moderator Susan Owens has a lot of good info. She claims that Yasko's theory isn't backed up by the agreed-upon science regarding sulfur. Supposedly she sees autistic children end up with muscle wasting (indicated by high 3-methylhistidine on organic acids tests) due to sulfur restriction, as the body will catabolize muscle if it needs sulfur.

According to Rich VanK's study with Dr. Nathan, CBS issues can be resolved without addressing CBS directly (since the patients in the study did the simplified protocol without genetic testing). So I dunno... :confused:

Interesting re the muscle loss and high 3-methylhistidine due to sulfur restriction. Mine was high on the NutraEval test almost 3 years ago now, and have definitely had muscle loss -- quite badly, especially in my feet.

I used to go on Owen's site but had never seen that, so thanks for posting it. I'm not sure of course that Owen's oxalate theory is correct, but she does make a good point about Yasko not ever having ANY studies to back up her claims about sulfur -- and especially her claim that SULFATE is toxic. Just completely contradicts the research by Waring and others.

Also, the study that Jill James did w/autistic kids with the CBS issue showed improvements/normalization in methylation status without any dietary sulfur restriction:

http://ajcn.nutrition.org/content/80/6/1611.full

Anne Likes Red has improved substantially over the past year or so, and she increased her sulfur foods/supplements.
 

invisiblejungle

Senior Member
Messages
228
Location
Chicago suburbs
II used to go on Owen's site but had never seen that, so thanks for posting it. I'm not sure of course that Owen's oxalate theory is correct, but she does make a good point about Yasko not ever having ANY studies to back up her claims about sulfur -- and especially her claim that SULFATE is toxic. Just completely contradicts the research by Waring and others.

Also, the study that Jill James did w/autistic kids with the CBS issue showed improvements/normalization in methylation status without any dietary sulfur restriction:

http://ajcn.nutrition.org/content/80/6/1611.full

Anne Likes Red has improved substantially over the past year or so, and she increased her sulfur foods/supplements.

As always, there are no easy answers. Personally I'm hoping that CBS is not as huge of an issue as Yasko makes it out to be, but that's just because I'd prefer not to have to worry about another dietary change. :D

However, there are some members of this forum who claim that they notice definite benefits from reducing sulfur and lowering their urine sulfate levels. It's probably different for everyone...
 

Patrick*

Formerly PWCalvin
Messages
245
Location
California
As always, there are no easy answers. Personally I'm hoping that CBS is not as huge of an issue as Yasko makes it out to be, but that's just because I'd prefer not to have to worry about another dietary change. :D

However, there are some members of this forum who claim that they notice definite benefits from reducing sulfur and lowering their urine sulfate levels. It's probably different for everyone...

I would prefer not to have to make dietary changes either. Pretty soon I'll be down to only water and avocados.

What about the ammonia issue? Dr. Yasko indicates that reducing ammonia is a key to addressing the CBS mutation. Do you know if Susan Owens has any criticisms of that part of the protocol?