• 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.

HELP: Has anyone been able to resolve their CBS upregulation problems?

dannybex

Senior Member
Messages
3,561
Location
Seattle
Hello friends,

I finally got my Yasko results back a week ago and have been going crazy -- literally -- trying to figure it out, sort out the conflicting information, especially regarding the CBS upregulation issue, which I unfortunately have. I thought for sure I'd have the MTHFR(!) problem, but only on one mutation.

Yasko says to cut protein way back, to use yucca, to avoid SAMe, methionine, taurine, MSM, and all other sulfur supps -- plus cut back on sulfur foods like eggs, which I was told by another practictioner I needed to increase!

She also says that not only is sulfur and sulfites a problem, but SULFATE is a problem too, which totally contradicts Rosemary Waring's research w/autistic/ASD folks where she found the vast majority were low in sulfate and that sulfate helped them.

I've lost 15 lbs in a year -- predicted in a way, by the methylation panel/nutreval results a year ago which showed I was using my own muscle/fat for fuel. So I need to turn this around, or at least STOP it from continuing. I understand the sulfite/ammonia connection -- and my ammonia was high -- as was my taurine -- so can work on that, but I just don't understand how two different researchers can have such conflicting advice.

Here's my results:

COMT V158M +/-, COMT H62H +/-, VDR Taq+/+, VDR Fok +/-, MAO A +/+, MTHFR C677T +/-, MTR A2758G +/-, MTRR A66G +/-, BHMT 2-4 +/-, CBS A360A +/+

THANKS IN ADVANCE FRIENDS,

Dan

p.s. Also Jill James did a study that showed the mb12 and folinic helped those with CBS issues -- they concluded that "Treatment with methylcobalamin and folinic acid seems to have rescued GSH synthesis in this cohort of children (with CBS upregulation) at the expense of transmethylation metabolites." Not sure what she means by the latter...

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2647708/?log$=activity

Any comments/suggestions are greatly appreciated!
 
Messages
39
Hi Danny,

I have exactly the same issues! MTHFR mutation and CBS up regulation. I also lost a lot of weight (17kg!)in a couple of months, as my body was also using my muscles for fuel. Found out that my lactate/pyruvate ratio is sky high and I have the beginning of insulin resistance (albeit being skelton thin) and a hefty intracellular acidosis. Since I started addressing that with high dose of chromium, vanadium and l-carnitine fumarate, the weight los stopped. I also started taking colloidal minerals and now my urine pH does not stop being acidic, so I am getting rid of tons of intracellular acids. Interestingly, my urine pH used to be alway around 7-8, so never thought this was an issue, until some doctor checked the buffer capacity of my blood and turned pale. That' how bad it was. It does seem to be normal in situations where your body is switching from aerobic to anaerobic metabolism due to lack of oxygen.
I also have high ammonia, high taurine, high alpha-keto-glutarte, low fume rate and low sulfate. However, due to lack of all nutrients, my methyliation basically was down, so I am now supplementing, but carefully, and bring it up to speed again.

I am starting with only the B-Plus Complex from Pure Encapsulations, as it gives me some B vitamins until I sort out the CBS up regulation,but does not kick start methyliation big time. Am going with the Yasko step 1, adding l-carnitine on top. For the ammonia, I have ordered yucca and I am also using some drops which bind Ammonia in the gut. Working full speed on gut dysbiosis and the intercellular acidosis. Additionally, I am trying to get some prescription BH4 to refill the tank.
Molybdenum will be the challenge and I am planning on taking a daily dose of 1000 mcg per day for the next 2-3 months and then retest levels. B6 is a challenge, since I have KPU and I need P5P, but not too much, so I do not overdrive the CBS and end up with Ammonia again.
My zinc/copper/iron balance is off, I guess as Yasko says can be a function of the molybdenum.

Carbohydrate metabolism is obviously a problem, but more so since I need to avoid carbs, but am supposed to eat low protein due to ammonia. Well, that makes it very easy.....Carbs will worsen lactate/pyruvate ratio and insulin resistance and protein will worsen Ammonia.

So my plan is really to bring gut, acid-base-balance and lack of nutrients back in order and only then go to step to, which is methyliation.
 
Messages
43
Location
southwest USA
Hello Dan,
I too have similiar snps. I have been following Yasko's protocol for 3 years or so now, and it's helped to move my function a step in the right direction. What I've done that has seemed worthwhile is to use carnitine fumarate, yucca, ora kidney from Douglas Labs (sold at Yasko's site), and molybdenum. The molybdenum is used to deal with the toxic sulfur (turns it into sulfate which is not toxic). Interestingly, my headaches and brain fog did decrease substantially with molybdenum. I believe that heartfixer also noted that with cbs the molybdenum will be low because it is used to convert the sulfite that is so abundant with cbs mutation. At one point (when on an antibiotic protocol) I went up to 1000mcg of molybdenum per day, but usually now just need 150 mcg per day. You can titrate the dose with molybdenum drops to see what works for you. Also, the doctor at the heartfixer site says that carnitine will help bind up ammonia. The carnitine fumarate is available through Source Naturals. I never did the RNA formulas, and I seem to have it under control. By binding the ammonia, you are supposed to then have better ability to clear metals.
I know we are all different, and I usually have fairly good tolerance for supplements, but would hope this would work for you also. Best of luck...
 

rydra_wong

Guest
Messages
514
Dan, I have the CBS upregulation and with Fredd's protocol I make enough carnitine. You can get a simple blood test for carnitine. Cheapest palce is usually ineedlabs.com. You should also have your homocysteine checked as this is the control you can use to determine if a protocol is better or worse for you...you want the number to be 6.3. It costs $60 to get the test most anywhere.

You can get test strips for sulfite and sulfate at Dr. Roberts' lab (heartfixer.com) so I am sure you can get them from Dr. Yasko also (Dr. Roberts follows her program). These will tell if you specifically have a problem with sulfite or sulfate which you despite your genes may be dealing with due to diet. You know you nede enough magnesium for that detox pathway (sulfite to sulfate to excretion of toxin) to work. See the diagram at enzymestuff.com (bottom right box is the sulfate detoc path). You also need magnesium to get rid of ammonia and to make ATP. The typical American is deficient in magnesium.

I follow Fredd'sprotocol in this way:
2x/day Thorne Basic B (contains mfolate plus folinic acid)
1 800 mcg mfolate
1 sublingual Jarrow mB12
1 50mg P5P
2g. TMG
1 egg, 1 www.lef.org cruciferous vegetable supplement, 1 garlic pill (all cysteine and sulfur sources)
3 g omega-3 (9g during allergy season) * (NOTE this is a REQUIRED part of the protocol!)
low protein (60g)

1g calcium citrate+1 g magnesium in divided doses
500 mg potassium
High dose anti-oxidants
High dose DHEA
Low dose pregnenolone

Other stuff. Fredd was thorough in his list but I took most of it already.

I suppose it's possible my sulfur load is actually low due to not eating a lot of protein but I am very careful to get sulfur in the protein that I do eat. My amino acids levels are fine, which means I guess that I am digesting my food and eating enough protein. I actually believe there is another path for getting rid of sulfur and that is the protein amination path where you use it to build tissues, so it is possible that since I eat a low protein diet, any extra sulfur may go to building tissues. I do make a lot of taurine though.

So I ignore what the doctors are saying on the sulfur. I feel it is the best food known to man -- at least in the quantities in which I consume it. Make sure you do not stop eating it altogether or you will not make SAMe and that will lead to neuropathy.

I don't take zinc because I am deficient in copper. I use liquid copper on my skin from skinbiology.com (the product with ONLY copper in it) and it makes my skin remarkably thicker and healthier (I got crepey skin on my neck from copper deficiency but immediately searched out a copper product and that took care of it fast). I sometimes take extra copper and know I should take more but it upsets my stomach.

I never use SAMe. It scares me. It is only 1 step away from homocysteine. I figure if my body can make it my body is more likely able to get rid of it but if I pump in a whole lot all bets are off.

(I think you are the one who said you were zinc deficient. r u sure? Because copper deficiency causes weight loss, muscle wasting, and B12 neuropathy symptoms).

The above protocol makes my homocysteine a near-perfect 6.1. (Perfect is 6.3)
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
Hi Danny,

I have exactly the same issues! MTHFR mutation and CBS up regulation. I also lost a lot of weight (17kg!)in a couple of months, as my body was also using my muscles for fuel. Found out that my lactate/pyruvate ratio is sky high and I have the beginning of insulin resistance (albeit being skelton thin) and a hefty intracellular acidosis. Since I started addressing that with high dose of chromium, vanadium and l-carnitine fumarate, the weight los stopped. I also started taking colloidal minerals and now my urine pH does not stop being acidic, so I am getting rid of tons of intracellular acids. Interestingly, my urine pH used to be alway around 7-8, so never thought this was an issue, until some doctor checked the buffer capacity of my blood and turned pale. That' how bad it was. It does seem to be normal in situations where your body is switching from aerobic to anaerobic metabolism due to lack of oxygen.
I also have high ammonia, high taurine, high alpha-keto-glutarte, low fume rate and low sulfate. However, due to lack of all nutrients, my methyliation basically was down, so I am now supplementing, but carefully, and bring it up to speed again.

I am starting with only the B-Plus Complex from Pure Encapsulations, as it gives me some B vitamins until I sort out the CBS up regulation,but does not kick start methyliation big time. Am going with the Yasko step 1, adding l-carnitine on top. For the ammonia, I have ordered yucca and I am also using some drops which bind Ammonia in the gut. Working full speed on gut dysbiosis and the intercellular acidosis. Additionally, I am trying to get some prescription BH4 to refill the tank.
Molybdenum will be the challenge and I am planning on taking a daily dose of 1000 mcg per day for the next 2-3 months and then retest levels. B6 is a challenge, since I have KPU and I need P5P, but not too much, so I do not overdrive the CBS and end up with Ammonia again.
My zinc/copper/iron balance is off, I guess as Yasko says can be a function of the molybdenum.

Carbohydrate metabolism is obviously a problem, but more so since I need to avoid carbs, but am supposed to eat low protein due to ammonia. Well, that makes it very easy.....Carbs will worsen lactate/pyruvate ratio and insulin resistance and protein will worsen Ammonia.

So my plan is really to bring gut, acid-base-balance and lack of nutrients back in order and only then go to step to, which is methyliation.

Wow. We're like fraternal twins Bianca! I'm sorry you're going through all of this, but am glad to get your feedback and it's (in a really weird way) "nice" to know I'm not the only one experiencing this problem. I hope you understand what I mean... :)

Glad to hear the weight loss stopped with the chromium, vanadium and l-carnitine. I have chromium and l-carnitine, but not vanadium. Can you tell me more about how the vanadium is supposed to help, and how did you decide what dose to take? (I've also just started the moly-b, in small doses for now, and might build up.)

I haven't done the KPU test, but as Ryda mentioned, I have had a couple of folks suggest I have "hidden" copper toxicity or overload. My zinc is very low -- from taste tests -- but each time I take zinc, I feel more anemic. It very well could be that I'm NOT copper toxic, but I was prescribed a copper only supplement a few times (both recently and in the past), and while it may have been needed briefly, it's possible that I took it for too long -- a bad thing -- and didn't balance it with zinc.

Re the carbs/protein balance -- if you eat a little of each, won't they balance themselves out? I understand that eating pure carbs would affect insulin resistance, but can't that be negated with added fats and protein? In the past anyway, (years ago) I would drop weight quickly if I didn't have at least some amount of complex carbs with my meals. ???

Anyway, thanks so much. I hope you'll stay in touch! Hopefully we can help each other figure this out (even though we're all different). :)

Dan

p.s. I haven't been able to tolerate any form of b6 in years. That's one of the main things that seems to make sense with this CBS issue.
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
Hello Dan,
I too have similiar snps. I have been following Yasko's protocol for 3 years or so now, and it's helped to move my function a step in the right direction. What I've done that has seemed worthwhile is to use carnitine fumarate, yucca, ora kidney from Douglas Labs (sold at Yasko's site), and molybdenum.

Hi Dunningblue,

Thanks for your reply too. Nice to hear from someone who has been following the protocol. (I can't seem to get actual replies on other sites -- except for copied statements from Yasko which don't really answer the questions I ask...at least not yet).


The molybdenum is used to deal with the toxic sulfur (turns it into sulfate which is not toxic).

That's what I thought too, and that's what I've read everywhere, except on the Yasko site and the heartfixer site. She says to avoid magnesium sulfate, glucosamine sulfate, chondroitin sulfate...etc. Do you know why? It doesn't seem to make sense to me. Other sites say that sulfate 'removes substances that act like adrenalin', and so many use mag sulfate to calm themselves or their autistic kids...

???

Interestingly, my headaches and brain fog did decrease substantially with molybdenum. I believe that heartfixer also noted that with cbs the molybdenum will be low because it is used to convert the sulfite that is so abundant with cbs mutation. At one point (when on an antibiotic protocol) I went up to 1000mcg of molybdenum per day, but usually now just need 150 mcg per day. You can titrate the dose with molybdenum drops to see what works for you. Also, the doctor at the heartfixer site says that carnitine will help bind up ammonia. The carnitine fumarate is available through Source Naturals. I never did the RNA formulas, and I seem to have it under control. By binding the ammonia, you are supposed to then have better ability to clear metals.
I know we are all different, and I usually have fairly good tolerance for supplements, but would hope this would work for you also. Best of luck...

Again, thank you. I'm curious if there are any other types of improvements you've experienced while on the protocol?

Dan
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
Dan, I have the CBS upregulation and with Fredd's protocol I make enough carnitine. You can get a simple blood test for carnitine. Cheapest palce is usually ineedlabs.com. You should also have your homocysteine checked as this is the control you can use to determine if a protocol is better or worse for you...you want the number to be 6.3. It costs $60 to get the test most anywhere.

You can get test strips for sulfite and sulfate at Dr. Roberts' lab (heartfixer.com) so I am sure you can get them from Dr. Yasko also (Dr. Roberts follows her program). These will tell if you specifically have a problem with sulfite or sulfate which you despite your genes may be dealing with due to diet. You know you nede enough magnesium for that detox pathway (sulfite to sulfate to excretion of toxin) to work. See the diagram at enzymestuff.com (bottom right box is the sulfate detoc path). You also need magnesium to get rid of ammonia and to make ATP. The typical American is deficient in magnesium.

I follow Fredd'sprotocol in this way:
2x/day Thorne Basic B (contains mfolate plus folinic acid)
1 800 mcg mfolate
1 sublingual Jarrow mB12
1 50mg P5P
2g. TMG
1 egg, 1 www.lef.org cruciferous vegetable supplement, 1 garlic pill (all cysteine and sulfur sources)
3 g omega-3 (9g during allergy season) * (NOTE this is a REQUIRED part of the protocol!)
low protein (60g)

1g calcium citrate+1 g magnesium in divided doses
500 mg potassium
High dose anti-oxidants
High dose DHEA
Low dose pregnenolone

Other stuff. Fredd was thorough in his list but I took most of it already.

I suppose it's possible my sulfur load is actually low due to not eating a lot of protein but I am very careful to get sulfur in the protein that I do eat. My amino acids levels are fine, which means I guess that I am digesting my food and eating enough protein. I actually believe there is another path for getting rid of sulfur and that is the protein amination path where you use it to build tissues, so it is possible that since I eat a low protein diet, any extra sulfur may go to building tissues. I do make a lot of taurine though.

So I ignore what the doctors are saying on the sulfur. I feel it is the best food known to man -- at least in the quantities in which I consume it. Make sure you do not stop eating it altogether or you will not make SAMe and that will lead to neuropathy.

I don't take zinc because I am deficient in copper. I use liquid copper on my skin from skinbiology.com (the product with ONLY copper in it) and it makes my skin remarkably thicker and healthier (I got crepey skin on my neck from copper deficiency but immediately searched out a copper product and that took care of it fast). I sometimes take extra copper and know I should take more but it upsets my stomach.

I never use SAMe. It scares me. It is only 1 step away from homocysteine. I figure if my body can make it my body is more likely able to get rid of it but if I pump in a whole lot all bets are off.

(I think you are the one who said you were zinc deficient. r u sure? Because copper deficiency causes weight loss, muscle wasting, and B12 neuropathy symptoms).

The above protocol makes my homocysteine a near-perfect 6.1. (Perfect is 6.3)

Hi Ryda,

Yup, that was me. I don't know yet if I'm actually copper toxic or not. The hair tissue analysis came back with sodium and potassium sky high, and all the minerals (except phosphorus and magnesium) relatively low -- but especially iron -- the lowest, then copper, then zinc. Moly-b was almost non-existent as were all the trace minerals. This was explained as being due to adrenal burnout and possible thyroid issues. Quoting: "The body may compensate for adrenal weakness by retaining excessive amounts of copper,iron, magnagnese, aluminum, chromium,lead, cadmium arsenic and other toxic metals."

Anyway, her plan is to actually give me some supps with copper, zinc, etc., in balanced proportions, along with some adrenal (and I think thymus) extract. And then test again in 4 months (if I'm still alive!), as in her practice she's found that once the adrenals are 'calmed down' then the true mineral picture will show up. ???

It's weird, but in blood and hair tests over the past 10 years, my magnesium level is always fine. Calcium is usually lower. I can't take a lot of the supps you're taking, especially the Thorne b's -- but could tolerate SAMe -- although I've stopped that since Friday and will see if I calm down a bit (if it was increasing ammonia due to the sulfur content). It ALWAYS used to pull me out of a dark hole over the past 14 years. But maybe if I'm doing the b12 and folate (which I also stopped for a few days now) that's overdriving methylation.

SO complicated, isn't it?

That's interesting about the copper supplement and your skin. My skin has been like 'crepe' for the last 2 years -- but it was during those two years that I was taking copper. Perhaps I'm not getting enough of the other collagen components...I don't know. All I know is that the last time I took a copper-only supplement (July 8th)...by the next day I thought I was going mad. Ramped up anxiety, super racing mind...could not nap during the day. I would never, ever take copper without zinc, ever again.

It's also said that one can be copper deficient and copper toxic at the same time. I guess ceruloplasmin (sp) is the best test, but aside from that, it's a liver biopsy! But again, it's not been confirmed, just strongly suspected, but I do wonder as I have tended to have a little more tingly feet since cutting out the copper supplement. Hopefully the multi-mineral will help address that in a more balanced way?

Never heard of copper deficiency causing weight loss or muscle wasting, but have heard that about zinc. And of course it's connected to folate def and b12 deficiency, etc.

As I said...SO COMPLICATED!!! :)

THANKS ALL FOR YOUR REPLIES -- VERY MUCH APPRECIATED!

p.s. Ryda -- curious, what kind of symptoms do you deal with, if you don't mind my asking? Very interesting that you can tolerate sulphur, among other things...
 
Messages
39
Hi Dan,

Yip, our profiles look very similar. Vanadium was suggested by Metametrix due to the insulin resistance. They suggested 200mcg per day. They are not doing a Plasma or RBC Vanadium status, but i had my hair tested and the Vanadium levels looked Ok-ish, so won't be taking this kind of dosage for a long time, that's for sure. maybe 2 months or so. On chromium, again no RBC done in the ION, but they suggested 400mcg/day. Hair levels definitely barely scratching the lower refernce, so I am OK with that for a while. Chromium has an impact on blood suggar regulation, similar does Vanadium I guess, so at the moment, I am taking Metamatrix's suggestion on this.
Lithium verrrrry deficient, so need to order that as well. I think Lithium orotate is what Yako suggests. will get that and supplement for a while. Similar, I am low on Moly, Bor, Mangan. I guess that's the problem of not taking a multi vit supplement and just supplementing this and that. It screws up the rest.

Copper was a difficult topic for me as well. Klinghard says to never supplement zink without copper. However, in the German forum, peolple also told me to be careful with copper overload, so i got really confused. So I started a lot of testing, which confused me even more. i have doen Coeruloplamin (which was lower refernce), Copper in Plasma (which was towards the higher refernce. RBC copper was low, copper in hair was high. What on earth....? So, I also did a 24h Urine copper test, as this is apparentlys the best indicator for copper overload, and that was in the normal range. So what to do? Then I read that Klinghardt said that many do confuse high copper in hair as copper overload, which is wrong, it means that the body is utilising a lot of the copper for the immune function and it oxidises and it means the person needs copper. Also, you have to watch iron status, as if you are deficient in iron, the body apparently cannot utilise copper well and you can end up with copper "parked" in tissue. Well, I am deficient in iron, even though I got 10iv in May/June and it was all great. God knows what happened to it. Anyway, I decided to substitute now with copper and iron and i am not doing that bad! The good thing about the metamatrix result is that they are suggesing a multi-vitamin, with everything in it, the dose just adjusted by the resuts you had in the test. You just have to bring that in line with your SNPs and some other things and then you have a guidance for the next 2-3 months.

I am really surprised to be deficient in Moly, since for a while, i was taking some curcuma tablets (not a great idea with my COMT status...) and in total, I had about 900mcg a day and was still deficient on a blood test i did back in July. At that time I took a lot of B6 and B12, so i guess, I worked my CBS enzyme hard. Apparently, low Moly is also responsible for the messed up copper/zinc ratios, according to Yasko. So definitely something for me to work on. Will start with a higher dosis to refill and then go down to a maintanace dosage of 200-300mcg.

B6 - according to the ION, I am not deficient on B vitamins (surprisingly) and even before I was re-starting the supplementation, I still had dreams - apparentlys a good marker for vit B6 deficiency. metamatrix suggested 15mg a day and my B-Plus complex has 10mg Py HCL and 5mg P5P. Seems to be enough for me. My KPU does not seem to be affecting B6 that much, but zink big time.

Zink - some people with KPU in the german Forum also experience strange symptoms after taking zink. The hypothesis there is that for some reason it is supposed to block the krebst cycle and activate the glutamate receptors. These people usually scale back zink and start with a very nlow dose, slowly working it up.

I am not sure if ysou also have gut issues and laktacidosis, but addressing this has helped big time stopping my weight loss. That and amino acid supplementation. It's no fun if people look at you like ou are bullemic and annorexic and some are even openly asking me if i have an eating disorder. And most doctors feel that this is positive proof that this is"all in your head" and "you should get phychiatric help".
 

aquariusgirl

Senior Member
Messages
1,732
/
bianca. did you do the KPU test thru ELN? DO you feel confident in your results?
Iron: yasko says to avoid this.. it's a virulence factor for gut bugs...ie it feeds them.
What did you do for lactic acidosis?
I can't even begin to fathom the copper issue. I think some ppl...maybe KDM ...think there is a problem with copper transport....so not sure supplementing more gets around the problem, but I don't have any links for you.sorry.
 

rydra_wong

Guest
Messages
514
Dan, I am in class so no way do I have the brain cells available right now to respnd to such a long note. I only want to comment that low copper means you are hyperthyroid. You may not have the symptoms if you don't get some other nutrient required to make thyroxin (such as mB12). Hyperthyroid causes muscle wasting and weight loss. www.ithyroid.com is where to look to get started if you have a copper deficiency. John Johnson treats that effectively with copper. Many hypers find they need lifelong high dose of copper. Estrogen helps one absorb copper (and you make estrogen too) so when it wanes (when your DHEA winds down in your case) you have a hard time absorbing copper. People are treating this with taking a higher dose of copper (15:5 zinc to copper to gain bone mass for instance). On ithyroid.com the doses may be higher.

Crepey skin on the outside is a view of what your blood vessels look like on th einside -- thin and ready to burst. You are a candidate for an anurism if you do not fix that. Your blood vessels have to be strong to withstand blood clots. Copper is required for the cross-linking of collagen.

Try eating lychee all by itself as a snack. It is high in copper and have no zinc to impede absorption.

Gotta go.
 

SaraM

Senior Member
Messages
526
?Dan, I guess LEAVES had a thread here on CBS upregulation with some info about supplements and diet.
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
Dan, I am in class so no way do I have the brain cells available right now to respnd to such a long note. I only want to comment that low copper means you are hyperthyroid. You may not have the symptoms if you don't get some other nutrient required to make thyroxin (such as mB12). Hyperthyroid causes muscle wasting and weight loss. www.ithyroid.com is where to look to get started if you have a copper deficiency. John Johnson treats that effectively with copper. Many hypers find they need lifelong high dose of copper. Estrogen helps one absorb copper (and you make estrogen too) so when it wanes (when your DHEA winds down in your case) you have a hard time absorbing copper. People are treating this with taking a higher dose of copper (15:5 zinc to copper to gain bone mass for instance). On ithyroid.com the doses may be higher.

Crepey skin on the outside is a view of what your blood vessels look like on th einside -- thin and ready to burst. You are a candidate for an anurism if you do not fix that. Your blood vessels have to be strong to withstand blood clots. Copper is required for the cross-linking of collagen.

Try eating lychee all by itself as a snack. It is high in copper and have no zinc to impede absorption.

Gotta go.

Hi Ryda,

As I mentioned above, I will be getting some copper in the metabolic supplements prescribed by the practictioner. I'll also be getting some zinc in a separate multi-type supplement. The practictioner, with over 25 years experience has said, again, as I mentioned above, that one can be both copper toxic and deficient at the same time, because the stored copper has become biounavailable. It's also very possible that the adrenal burnout strongly indicated on the test can also cause some hyperthyroid-type issues, but also hypothyroid -- I have a little of both, probably about 50/50 since the adrenals may cause problems with temperature regulation just like the thyroid can -- or so I'm told. (For example, my feet are icy cold, I don't sweat at all, both hypo-type symptoms, (but also adrenal symptoms), but also have the anxiety and weight loss (hyper-symptoms).

The program helps restore/calm down adrenal hyperfunction, so that the possible thyroid problems -- and digestion, etc -- will improve too.

There are many things required for proper collagen synthesis besides copper...including zinc, vitamin C (which I know I don't get enough of) and also the amino acids that make up collagen itself. I guess I should've been more clear -- yes, I have thin skin in some areas -- on my hands, my neck, maybe my upper arms. But there are also many places on my body where my skin is thicker and almost crusty as well (which could be possibly zinc, vitamin a, vitamin c, mb12, folate, etc.....).

I'm also well aware that my body is in sort of a 'disintegration' mode, and that it may -- may -- be likely that some of my blood vessels are weak. But I think it's highly inappropriate for anyone to tell someone (especially someone with anxiety issues as some of us have here) that their blood vessels are "thin and ready to burst" and that I'm a "candidate for an anueurism".

I know you mean well Ryda, but that was really inappropriate, distressing and uncalled for. I hope you'll be a little more careful with your words in the future.

Respectfully,

Dan
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
Hi Dan,

Yip, our profiles look very similar. Vanadium was suggested by Metametrix due to the insulin resistance. They suggested 200mcg per day. They are not doing a Plasma or RBC Vanadium status, but i had my hair tested and the Vanadium levels looked Ok-ish, so won't be taking this kind of dosage for a long time, that's for sure. maybe 2 months or so. On chromium, again no RBC done in the ION, but they suggested 400mcg/day. Hair levels definitely barely scratching the lower refernce, so I am OK with that for a while. Chromium has an impact on blood suggar regulation, similar does Vanadium I guess, so at the moment, I am taking Metamatrix's suggestion on this.
Lithium verrrrry deficient, so need to order that as well. I think Lithium orotate is what Yako suggests. will get that and supplement for a while. Similar, I am low on Moly, Bor, Mangan. I guess that's the problem of not taking a multi vit supplement and just supplementing this and that. It screws up the rest.

Copper was a difficult topic for me as well. Klinghard says to never supplement zink without copper. However, in the German forum, peolple also told me to be careful with copper overload, so i got really confused. So I started a lot of testing, which confused me even more. i have doen Coeruloplamin (which was lower refernce), Copper in Plasma (which was towards the higher refernce. RBC copper was low, copper in hair was high. What on earth....? So, I also did a 24h Urine copper test, as this is apparentlys the best indicator for copper overload, and that was in the normal range. So what to do? Then I read that Klinghardt said that many do confuse high copper in hair as copper overload, which is wrong, it means that the body is utilising a lot of the copper for the immune function and it oxidises and it means the person needs copper. Also, you have to watch iron status, as if you are deficient in iron, the body apparently cannot utilise copper well and you can end up with copper "parked" in tissue. Well, I am deficient in iron, even though I got 10iv in May/June and it was all great. God knows what happened to it. Anyway, I decided to substitute now with copper and iron and i am not doing that bad! The good thing about the metamatrix result is that they are suggesing a multi-vitamin, with everything in it, the dose just adjusted by the resuts you had in the test. You just have to bring that in line with your SNPs and some other things and then you have a guidance for the next 2-3 months.

Hi again -- yes, it's so complicated, but your case (and of course all of ours) stress the importance of mineral and other nutrient interactions. And from what I've read and I'm sure you have, heavy metals can screw up a lot of this mineral transport -- and the methylation stuff.

I am really surprised to be deficient in Moly, since for a while, i was taking some curcuma tablets (not a great idea with my COMT status...) and in total, I had about 900mcg a day and was still deficient on a blood test i did back in July. At that time I took a lot of B6 and B12, so i guess, I worked my CBS enzyme hard. Apparently, low Moly is also responsible for the messed up copper/zinc ratios, according to Yasko. So definitely something for me to work on. Will start with a higher dosis to refill and then go down to a maintanace dosage of 200-300mcg.

B6 - according to the ION, I am not deficient on B vitamins (surprisingly) and even before I was re-starting the supplementation, I still had dreams - apparentlys a good marker for vit B6 deficiency. metamatrix suggested 15mg a day and my B-Plus complex has 10mg Py HCL and 5mg P5P. Seems to be enough for me. My KPU does not seem to be affecting B6 that much, but zink big time.

Zink - some people with KPU in the german Forum also experience strange symptoms after taking zink. The hypothesis there is that for some reason it is supposed to block the krebst cycle and activate the glutamate receptors. These people usually scale back zink and start with a very nlow dose, slowly working it up.

I am not sure if ysou also have gut issues and laktacidosis, but addressing this has helped big time stopping my weight loss. That and amino acid supplementation. It's no fun if people look at you like ou are bullemic and annorexic and some are even openly asking me if i have an eating disorder. And most doctors feel that this is positive proof that this is"all in your head" and "you should get phychiatric help".

I don't think I have gut issues -- I did a stool (digestive and parasite) analysis about 3 months back and everything came out fine. But my medicaid doc wants me to do a colonoscopy which I dread, but will get it over with in 10 days or so. How does the test measure lactic acidosis? And may I ask, are you taking specific aminos that they found you were lacking, or just some generic formula?

Dan
 

rydra_wong

Guest
Messages
514
Dan, I never dreamed you would take it badly. It is only that that is the medical science - copper is required for lysl oxidase for cross linking of collagen. I stated what I did because you (and I) can say it hurts our stomach etc etc but we can't argue with nature -- it is needed for cross-linking of collagen. I recognise quite clearly that I am hyperthyroid (borderline) and because the medical establishment has not come up with a good measure of copper status (invalidating most of the studies) they believe it is rare to be copper deficient, but I do not think it is rare. I think if you were about to step out in front of a truck and a friend did not say, "Hey, look out!" then that would be no kind of a friend.

As it happens the symptoms I experience, which you asked, are that I feel like a "fragile bag of protoplasim" - I beat off one health problem only to fall into another. I have learned many things from a lifetime battle and no one helped me even the tiniest bit so I try to reach out my hand to others. Sometimes people even thank me.

I have to go - I am at the laundrymat and my clothes are done.

Take care,
Rydra

P.S. It does not matter how much collagen you make -- if it is not cross-linked due to copper deficiency, you will have weak skin. It is only copper that does that, nothing else. W/o enough copper it is like building a brick house w/o staggering the bricks. This is medical science that's all. And I would be horribly upset for that to happen to you, no matter how crusty you are. To me you are the precocious kid with white glasses. The kid inside.

P.P.S. I lost 20 pounds w/o trying in no time at all after my hysterectomy but I got low copper diagnosed and I took 5mg doses of copper, used liquid copper on my skin, discontinued zinc, as well as got onto bioidentical hormone replacement to bring it up. I eat lots of chocolate (a high copper food) and I drank lychee tea and ate lychee. I stopped losing weight. I stopped having crepey skin anywhere. I function at a 7 on the scale. I cannot tolerate chemicals or drugs, and right now I am constantly exposed to flea control products so I am coming apart at the seams. But inbetween allergy seasons and chemicals I am fairly fine. Since my genes are much worse than yours I would think you would want to compare notes and really listen to what I have to say. I came to this site wanting to get more stability in my daily life so that I could learn to be immune to chemicals and the shit that takes me down (but from which I bounce right back up) only to find the people here so much sicker than me. You treat me like a gadfly (not just you) - nothing I say could possibly be relevant -- since I am not a 2 on the scale or something and never have been for more than a few days. But look at my genes. I have read many hundreds of studies on copper. I educated myself on the topic to the nth degree.

A friend of mine who recovered himself from both RA and low copper wrote a book with a chapter on copper. Here is from that book: http://members.tripod.com/~charles_W/copper.html. Regarding Vitamin C, before you raise your dose look at page 3, wherein Charles cites: Vitamin C causes ruptures of the aorta in copper deficient animals [Owen]. (This scared me since I take 2g C/day. Maybe careful with the C).

If you poke around in there a bit, you'll find he has a chapter on what he has found on ME/CFS. (He did not mount a study on it, just wrote up what he stumbled over).

Here is a website to find foods high in copper and low in whatever (such as zinc since zinc impedes copper absorption). You can pick whatever works for you: http://nutritiondata.self.com/tools/nutrient-search.

Also you should read the paper at tracelements.com on copper because it tells you all the nutrients that have been shown at one time or another to impede copper absorption. (Things like molybdenum).

I don't know anything about my CBS gene except that it is supposed to make your homocysteine low and mine was high (but is now perfect on Fredd's protocol). I decided to ignore the CBS gene rather than freak out about it since my homocysteine was high rather than low (indicating the CBS did not have that much effect). If your homocysteine is also high, you might focus on that to good effect. If it is low then I don't know how to fix that (except that I would try Fredd's protocol anyway just to be sure that didn't fix it because the trick will be to speed up the mfolate+mB12 path and the choline/TMG/BHMT path so that they can beat out the CBS gene at least some of the time. (Perhaps taking extra of these supplements may help). I think if you can get your homocysteine to 6.3 you will be making enough SAMe to be a 7 also.

Now I really am done. I have said all I am going to say about copper. I think a lot of people here have copper deficiency and don't know it because copper is an acute phase reactant and is miobilized by the body to kill infections, or also in the case of OTC drugs, inflammation, hormonal state,etc.

Dr. Wilson, the adrenal fatigue doctor, thinks that everyone with candida is copper deficient and a lot of people here have that problem. Most older Americans have bone loss despite taking every bone-building supplement on the market (because high dose copper is not in them). Bone loss can be reversed if these nutrients are taken in this ration cal:zn:cu:mn 1g:15mg:5mg:2.5mg. [Lowe]. Most older Americans suffer from arthritis and studies show copper helps with that.

I am not the only one whose copper status is helped by DHEA (adrenal hormone). (I have seen no evidence that copper is absorbed without mettallothionein so am personally doubtful it could build up in that case. I'd be interested to see any evidence otherwise). See note 10495 in BetterMedicine for a person who found candida magically disappeared after starting bioidntical hormones:

Mantis,

I remember reading something about copper deficiency sometime ago.

I also suffer from candida and once I started the bioidentical hormone replacement, the candida magically disappeared. While all of my other symptoms have reappeared, that one has not..knocking on wood!

When my bipolar/hormonal symptoms first appeared and I was hospitalized, I had a huge candida breakout on my legs and stomach and the condition has been chronic since! At that time, the doctors COULD NOT figure out what it was.....

Apologize for all of the posts, but I cannot get it together enough to respond in one message!
Hi ohfaithful,

I found an excellent website here which I believe can explain all this. It supports what I said, but adds more detail. Link is:

http://www.drlwilson.com/articles/candida.htm

Here is a quote from it:

Copper is the bodys natural anti-candida agent. Farmers often spray copper sulfate on fruits and vegetables to kill yeast and molds. Water departments may add copper compounds to drinking water for the same reason. Copper may be added to swimming pools and hot tubs to control yeast. Copper favors aerobic metabolism which disables yeast.

Everyone with candida has a copper imbalance. Most often, copper is present but not available to the body. This is due to deficiency of ceruloplasmin, a copper binding protein. Adrenal hormones are required to produce ceruloplasmin. Underactive, exhausted adrenal glands or sluggish liver activity cause a decrease in ceruloplasmin production. As a result, copper is not properly bound and is less available to the body. Until the copper-adrenal-liver condition is corrected, candida is difficult to control.

So, basically, copper builds in the tissues, but it cannot be utilized I believe unless the body is producing enough ceruloplasmin which is the job of the adrenals...

-------
Please also note that behind the scenes, Fredd also takes Pregnenolone and DHEA. I consider it an unwritten part of his protocol.

That's all - I bound it all up into one note that you can just ignore -- feel free.
 
Messages
43
Location
southwest USA
Hello Dan,
Sorry that I don's have links, but the info about molybdenum being used to detox sulfite into the non toxic sulfate I found in my notes that I had unearthed somewhere on the Yasko site. Yasko (or maybe it was on heartfixer) had also recommended boron to help with toxic sulfite (due to CBS, boron and molybdenum are utilized at a faster rate). I always start small and only test the waters before doing a more intense supplementation (then usually for a short time, and usually backing down to smaller amounts after initial doses). The molybdenum was also suggested by my CFS/ME doctor to aide in detoxing sulfite. As far as Yasko recommending avoidance of magnesium sulfates and other sulfates, I was not aware of this. I hadn't heard that it was being used to calm kids with autism. I agree, it doesn't make sense.
As to your other question about other improvements I've made while on the protocol, I'd have say that it's been a long, slow but steady improvement in overall function (think years, not months). I think just the basic vitamin and mineral supplements that Yasko suggested (step 1 I believe) have helped. I haven't gone really overboard with Yasko's protocol, preferring to address other issues with what money I have. I've done a lot of other things like fairly high dose of vitamin c (buffered), prescription pancreatic enzymes, iodine (on the advice of my doctor-after thyroid testing), and diet considerations (try to follow a paleo diet with lots of vegetables and some protein with every meal (I don't eat lots of protein, but prefer to balance the ammonia issues by taking 1/2 a yucca capsule with meat). I am also on a combined abx protocol, and I feel that this has helped maintain my ability to work, although it's balanced by lots of probiotics. I am fortunate to have a fairly healthy gut, and know that abx must be handled very carefully (mindful of limiting carbs and use of antifungal herbals). I felt as if my chlamydia pneumonia infection was spreading so rapidly that I had no choice but to do something before becomming very disabled. I have a long way to go, but most days are fairly good, and I can work 4 days a week now without much distress at the end of a week.
Hope you can find some relief and move in the right direstion...
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
Thanks Rydra -- I appreciate your reply.

And thank you too Dunningblue -- glad to hear you're improving. I also don't understand her take on sulfate, but have since heard from others that they believe it's not correct. Sulfite is a problem, but we need sulfate. That's the consensus at least...

I've got to stay off the computer for at least a day...too draining lately...but will check in again soon. Appreciate all replies. :)
 

anne_likes_red

Senior Member
Messages
1,103
Dan, Molyb - Sulfite oxidase.

Molybdenum is a...
component of four main enzymes:
Sulfite oxidase. This enzyme catalyzes the transformation of sulfite to sulfate, a reaction that is necessary for the metabolism of sulfur-containing amino acids, such as cysteine.
Xanthine oxidase. This enzyme catalyzes the breakdown of nucleotides (precursors of DNA and RNA) to form uric acid, which contributes to the antioxidant capacity of the blood.
Aldehyde oxidase. This enzyme is involved in several reactions, including the catabolism of pyrimidines.
Xanthine dehydrogenase. This enzyme catalyzes the conversion of hypoxanthine to xanthine, and xanthine to uric acid.

...from http://www.diet.com/g/molybdenum

Best :)
 

rydra_wong

Guest
Messages
514
Don't forget - Dr. Yasko is treating autistic children (who have no adult hormones yet). The world is apparently very different without hormones. She is doing the best that she can for them, it is not good to be w/o sulfate but in the kids it may be necessary.

The liver needs sulfate to detox. You can look at www.enzymestuff.com click on the picture and look at the box lower right. To get to the liver detox box you need sulfate and magnesium and molybdenum, but if you supply the sulfate and the magnesium directly, such as via Epsom salts, your liver can detox w/o molybdenum. (I would do that if I were low copper as opposed to taking molybdenum because that is well known to interfere with copper absorption). (Not that I wouldn't try to raise every low element, but if they interfere I would start with the most critical, and that is copper).

I happen to be high in molybdenum - I never could figure out why and I even wondered if it exists in tablet excipients. I tried epsom salts foot baths just because they are so highly touted and not only did they not do a thing for me but they irritated my skin after about 10 minutes. Maybe if you are low in molybdenum you can tolerate them for a normal amount of time. If you are not sure your detox paths are woking (such as due to low molybdenum) then I would certainly try Epsom salts to see if they help you.

A great resource for looking at biochemical pathways is here: http://web.expasy.org/cgi-bin/pathways/show_thumbnails.pl
So, for instance, the detox path with molybdenum is here: http://web.expasy.org/cgi-bin/pathways/show_image?J4
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
I found an excellent website here which I believe can explain all this. It supports what I said, but adds more detail. Link is:

http://www.drlwilson.com/articles/candida.htm

Here is a quote from it:

Copper is the bodys natural anti-candida agent. Farmers often spray copper sulfate on fruits and vegetables to kill yeast and molds. Water departments may add copper compounds to drinking water for the same reason. Copper may be added to swimming pools and hot tubs to control yeast. Copper favors aerobic metabolism which disables yeast.

Everyone with candida has a copper imbalance. Most often, copper is present but not available to the body. This is due to deficiency of ceruloplasmin, a copper binding protein. Adrenal hormones are required to produce ceruloplasmin. Underactive, exhausted adrenal glands or sluggish liver activity cause a decrease in ceruloplasmin production. As a result, copper is not properly bound and is less available to the body. Until the copper-adrenal-liver condition is corrected,candida is difficult to control.

So, basically, copper builds in the tissues, but it cannot be utilized I believe unless the body is producing enough ceruloplasmin which is the job of the adrenals...

Hi Rydra,

Bingo. That's the point that I was trying to make (and the practictioner I'm working with emphasizes), but guess I didn't do so very well. If one's adrenals are in crisis, hyperactive, hypoactive, or basically not functioning properly -- copper will build up in the tissues, resulting in both copper toxicity and deficiency at the same time. My practitioner basically follows the same theories as Dr. Wilson, based on the work of Paul Eck. She's found Eck was THE expert on mineral balancing and restoring adrenal function.

I've 'talked' with Charles, the very nice guy who wrote the copper website, and he was unaware of copper toxicity until just about 4 months ago. He added links to the topic after I brought it up and he looked into it. I just got my box o' supplements for the program today -- 2 of them contain copper(!) -- and will begin them tomorrow at lunch, so I can gauge my reaction. The only thing I'm worried about is the b6 -- I don't seem to tolerate it at all -- and one of the supps has 10mgs in it, to be taken 6 times a day.

We'll see what happens...

Thanks again,

Dan