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I have given my son garlic in his food, eggs to eat and epsom salt baths. I really believe sulfer is great with maintaining his tics to a low level and when we were doing DMPS they got to a point where they were not noticable. Does anyone know of sulfer supplements that are natural and have a track record from somewhere?

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Andy,

 

Here is a partial list from the Yasko forum. I left the CBS info attached, as there is concern over supplementing sulfur donors with certain genetics. I have read a couple of posts that have said, while their child tested for positive for CBS mutations, they still did well with sulfur donors. Also, for my boys I feel one of the things that are going to be essential is keeping an eye on ammonia levels, going forward. Protein...eggs and othe sulfur sources may contribute to rising ammonia levels. This is just my limited understanding. Hope you will comment if you have thoughts. One other question Andy. What do you think about having gentic testing? Do you see a day where you could be forced to provide that info to insurers? I'm leary of that.

 

 

SULFUR DONORS: ( avoid if cbs+, no extra than what is in the HHC multi)

taurine

broccoli

garlic

glutathione

NAC

SAMe

magnesium sulfate cream

glucosamine sulfate

chondroitin sulfate

MSM

ALA

milk thistle

Beyond C

DMPS

DMSA

Heparin

 

AMMONIA PROVOKERS: (Issues for CBS +)

protein

B6

glutathione

taurine

NAC

 

AMMONIA PROVOKERS: (Issues for CBS +)

protein

B6

glutathione

taurine

NAC

 

LIPID DONORS: (limit for CBS+, NOS+)

Immune Factors

Any transdermal creams

Lipoceutical EDTA and Lipoceutical glutathione

High doses of EFA

CoQ10

ALA

Idebenone

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Andy,

 

Here is a partial list from the Yasko forum. I left the CBS info attached, as there is concern over supplementing sulfur donors with certain genetics. I have read a couple of posts that have said, while their child tested for positive for CBS mutations, they still did well with sulfur donors.

 

The CBS mutation is an interesting concern. However, I think that the majority of TS kids who have problems with ammonia levels is that the ammonia is the waste product from the yeast and fungus overgrowth in the gut. The sulfer connection is that when sulfer products like DMSA are taken orally, the yeast and fungus feed upon it and the overgrowth expands even more. IV chelations by pass the gut by going directly thru the blood stream to avoid any patient who has gut issues, In my view this is really the only reason anyone who is doing IV chelation should chose that measure. As with the sulfer type foods, as you know there are supplements that can counteract them such as pro-biotics, grape seed extract, treelac, etc.. which for those others who may be reading this are meant to build up positive bacteria and kill off excess yeast or fungus gut overgrowth which may be caused from mercury levels or an auto-immune dysfunction.

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My thoughts are that most TS kids who have issues with sulfer do not have the CBS mutation. I do not thing that the CBS mutation is causing the ammonia levels. I feel that the ammonia levels are brought about by the waste product of yeast and fungus overgrowth in the gut. The waste product is the ammonia. Now Sulfer products can feed the yeast and fungus overgrowth inwhich brings more yeast/fungus and therefore more waste products which would be the ammonia.

This is why IV chelation is done and not dmsa pills for example for those who have the gut issue to by pass the gut and go straight into the blood stream.

Now treatments like Nystain, Treelac, grapeseed extract, and pro-biotics can cause a short spike in tics for these products kill the yeast/fungus which as it dies releases all of its wastes, ie-ammonia.

 

Things that can cause yeast/fungus issues in the gut is mercury in the body and auto-immune dysfunction.

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My thoughts are that most TS kids who have issues with sulfer do not have the CBS mutation. I do not thing that the CBS mutation is causing the ammonia levels. I feel that the ammonia levels are brought about by the waste product of yeast and fungus overgrowth in the gut. The waste product is the ammonia. Now Sulfer products can feed the yeast and fungus overgrowth inwhich brings more yeast/fungus and therefore more waste products which would be the ammonia.

This is why IV chelation is done and not dmsa pills for example for those who have the gut issue to by pass the gut and go straight into the blood stream.

Now treatments like Nystain, Treelac, grapeseed extract, and pro-biotics can cause a short spike in tics for these products kill the yeast/fungus which as it dies releases all of its wastes, ie-ammonia.

 

Things that can cause yeast/fungus issues in the gut is mercury in the body and auto-immune dysfunction

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I just want to add something to this thread re eggs and sulfur, not sure but there may be something there.

 

I am still giving my son scrambled eggs here and there despite them being supposedly one of his sensitivities on a recent Igg test, and I have noted that it "does not" seem to have any negative effect on my son's tics, in fact, I felt the days I did give eggs for breakfast, he actually seemed to be a little better that day. In fact just yesterday I gave him two soft boiled eggs in the morning and things are none the worse, actually he is starting to do noticeably better. :wub: Not saying it is directly because of the eggs, but just that it did not affect him. (hope its not just a fluke) -- I will update more in the next week.

 

Faith

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Faith,

Is there anything that you can put your finger on as to why he is doing better? Have you eliminated other things on the IGG that would have helped? I do think the allergies in the air are starting to be reduced so maybe that is helping.

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Andy,

 

There is another parent here with a child with a bony tumor as my son has. He tested positive of a CBS mutation. We also have funky finger and toe nails in common when our boys were infants. I'm having a hard time sorting out the lack of proper cysteine synthesis and what would be a symptom of lack of sulfur. I think I need to go back to the basics and look at the relationship btwn sulfur and cysteine again. I need someone to list memory enhancing supps. as I seem to have forgotten what they are :P I get so deep into my subject, I forget the easier stuff.

 

I wanted to add that we had high yeast marker, with normal ammonia levels (youngest son). I believe the reason the ammonia level was low was because of the protein avoidance. I do understand what you're saying about chelating agents feeding yeast and causing higher ammonia levels, though. As you can see from the list from the Yasko forum NAC, B6, taurine, protein, glut can also provoke, so I guess testing is the only way to keep an eye on it.

 

I'm only now learning about some of the mutations. If I'm understanding correctly, really high levels of taurine will indicate a problem with CBS. Not sure if there are other mutations that will cause that too though.

 

 

Faith,

 

There was a flyer that came from one of the labs that does a lot of testing. I only scanned the article, but it was talking about a Dr. with an autistic step daughter. They removed eggs due to sensitivity testing results. Her behavior deteriorated. They added egg back in, and she was better. I think the bottom line was that the cholesterol was needed.

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bmom,

I can't put an exact finger on anything just yet, but he did seem really well yesterday, I am noticing the head bob is not constant now, but here and there, which is a big improvement. I have a few things I was working on and I am asking myself the same question. It could be that allergy season is ending, but I am not aware if this is a definite trigger for him, but possibly it is helping matters? I am even wondering if it being so hot yesterday had anything to do with it (maybe brain cells expanding? LOL)

 

I mentioned I was also trying out the NAC, and I did NOT see any improvement, but possibly it is now kicking in after a month or so? Another is that I stopped giving the methylB12 shots and folic acid (as myrose mentioned it was supposedly a no-no if you are high histamine? I never paid attention to that info much because he gets this due to the MTHFR mutation which suggests a NEED for this form of B12 :P ) Again, don't know if he is, but figured I try it out since he is not doing great with this in the regimin anyway. Now I am wondering if this is helping us out? (boy will I be happy, because it costs me $100 per month for this B12 supply). I have also given a 50 mg. B6 for about 3 weeks. I have gone back and forth with B6 and bvits in the past, because I was always suspicious of them being a culprit, but this time I'm trying to stick with it as I think B6 seems to be a cofactor for many other supps and pathways?

 

I also have cut back on fruits (salicylates). I am not eliminating gluten/wheat right now, and as I have said, I kept the eggs in for now, and do not see any problem with eggs, for if there was, he surely would not be better, right? There was nothing else that stood out for me on the Igg that I wasn't really doing before.

 

Now everything I mention above I have been doing for more than a month already (except stopping the b12 shots), and so did not see any immediate results. Who knows if it is taking this much time to kick in and make a difference? Or is this just the way it goes with wax and wane? Only a little more time will tell. I don't think I'm out of the woods yet, but there is definitely a lessening. I did see some eye twitching this morning. I will definitely post how things go in the next couple of weeks.

 

Faith

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I just want to add something to this thread re eggs and sulfur, not sure but there may be something there.

 

I am still giving my son scrambled eggs here and there despite them being supposedly one of his sensitivities on a recent Igg test, and I have noted that it "does not" seem to have any negative effect on my son's tics, in fact, I felt the days I did give eggs for breakfast, he actually seemed to be a little better that day. In fact just yesterday I gave him two soft boiled eggs in the morning and things are none the worse, actually he is starting to do noticeably better. :huh: Not saying it is directly because of the eggs, but just that it did not affect him. (hope its not just a fluke) -- I will update more in the next week.

 

Faith

 

May not be of anything but if I remember two of the best brain foods outside of untainted fish is eggs and pork.

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eggs and pork are brain food regarding vitamin B's and aminos acids that they contain.

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