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

Messages
76
Location
Southwest
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!

Hi Dan--

We have similiar snps. Here are some of the things I do:

Diet: I love protein, and feel much better with protein, so I eat quite a lot. I use Yucca root (Swanson's) to mitigate ammonia. I have not noticed side-effects.


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.

FWIW---I think Yasko is wrong about sulfur/sulfites/sulfates.....Warings approach with the ASD population is more accurate.

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.

I have been working on my Gut Health for the last year---and some of the most beneficial things I have found are these (cut from another post I made in PR):

As for healing your gut: I have found great improvements with Resistant Starches---the ones I use almost daily are: parboiled rice (rinsed, cooked, and cooled ---then slightly re-heated), boiled potatoes (any kind, leave skins on, boil at a minimum of 45 minutes, then cooled thoroughly... eat slightly re-heated or cold) ....---of course these Resistant Starches are eaten as a part of a whole meal---a lovely piece of meat/fish/chicken.... and a veggie or two

Additionally, I take:

Probiotics:
1.) Miyarisan (Clostridium Butyricum/from Japan/Amazon.com)
2.) Natren Healthy Trinity (Lactobacillus acidopholus, Bifidobacterium bifidum, Lactobacillus bulgaricus)
3.) Symbion for Life (Bacillus coagulans, Bacillus subtilis, Enterococcus faecium)

Foods:
1.) Kimchi (or any fermented foods you like)
2.) plain yoghurt (full fat)
3.) shredded carrot

Digestive Enzymes:
1.) Daily Essential Enzymes (Source Naturals)
2.) Bile Acid Factors (Jarrow)

Other supplements good for gut:
1.) Sunflower lecithin (Swanson)

I hope this helps. I think healing the gut takes time. Be patient with yourself. Be persistent. Be tenacious.


Additionally, I take all the B-vitamins individually... I have done this for about 2 years now. One of the reasons I do this is that many B-complexes have far more B6 than I can tolerate. I now use a liquid B6 from (Metabolics/P-5-P) and I can control the amount I take very tightly.


I am wishing you good health,
Silverseas2014

P.S.--- Since you mentioned Yasko (autistics) and "conflicting" data with other researchers, have a look at this study: Adams et al. Nutrition & Metabolism 2011, 8:34 http://www.nutritionandmetabolism.com/content/8/1/34.
---As you read through it, notice how some autistic kids have normal/too much B6 and others have too little....
 
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dannybex

Senior Member
Messages
3,561
Location
Seattle
@silverseas2014 -- thanks for your comments.

As you probably know I started this thread (forgot that I did though!) five years ago, so I've learned a few things along the way, and one of them is that yes, Yasko is definitely wrong when it comes to sulfur chemistry and the issues it presents in ME/CFS and autism. It took some years to make sure of that, but after Ben Lynch changed his tune on it that helped confirm what many were saying, as he was touting her hypothesis for several years as well.

I have to take the b-vits individually as well, because of the b-6/p5p toxicity issue. Every time I've tried it I can only tolerate it for maybe 2 days, then I start getting leg jerks at night, not to mention stocking-glove neuropathy. Still not sure after 5+ years exactly why this is, but I think it's possibly connected to quinolinic acid, a nasty neurotoxin which tested as elevated for me 2-3 years ago. But not certain, and very frustrating that so many of us cannot just take a b-complex.

Am working on gut health too, with very limited funds as always, but have histamine intolerance issues, so can't take most, if not all of the probiotics you suggested. Not sure about the Symbion (which is basically Threelac), but the others have histamine producing strains in them. Even worse with the fermented stuff, unfortunately. All of that really sends histamine levels high. Thought I was gonna die when I did two days of kefir last summer.

Having said that, I might try some small amounts of kimchi however, because the main strain in that (l. sakei) has been found to be deficient in those with sinus congestion/infections, which I've been fighting for years now.

I do eat rice as I have gluten intolerance, but also can't do the

Can't do full fat, or even moderate -- get RLS every single time -- but am trying to increase it very slowly. I think in my case it's a catch-22. Started having this problem about 10 years ago (probably from 'bad' fats) so went lower fat, and that created a pre-metabolic syndrome/pre-diabetic thing where my triglycerides went really high along with skewed 'good' and 'bad' cholesterol levels. I'm going to look at that TUDCA you mentioned in another thread because that might be something that could help improve my tired, dried up ol' liver and gallbladder -- so thanks for posting that.

I do eat rice as I have gluten intolerance, but also can't do the Miyarisan, or haven't gone there yet, after reading that Dr. Grace Liu advises against it for those with pre-diabetic/insulin resistance issues. I don't have the link right here, but she had a patient with those problems who got a LOT worse taking it along with resistant starch. Of course I found this out after I ordered it and waited a month to get the stuff. :)

Anyway, thanks again for your comments.
 
Messages
76
Location
Southwest
Hi Danny--

A couple thoughts/comments:

On the probiotics I mentioned: I rotate them, and I also don't take them every day. Of all of them, I really like Natren's Healthy Trinity, but my god is it expensive! My goal with Probiotics is to eventually not take them---that is, my gut will be so healthy that the good bacteria will be self-sustaining---Key to this endeavor is eating Resistant Starches a preponderance of days of the week. BUT, until my bacteria are self-sustaining, I continue to take Pre- and Pro- Biotics regularly and giving them lots of resistant starches to grow and develop. I also am not interested in killing off all bad bacteria---a part of my goal is that the good bacteria will simply keep the bad in check.

Recently I have read that Biotin is useful for combating Candida---and since many of us seem to have problems with deficiencies/absorption of the Bs, it might be worth trying a large (5 mg.) dose of Biotin for a couple of weeks to see if it helps.

For histamine issues, I take Nettle (Nettle leaf, not nettle root---I use Nature's Way).... I dose throughout the day as needed. I also use a nettle infusion (basically a cup of dried nettle leaf in a quart of boiling water; let it sit over-night, strain, cool, put in fridge and drink it throughout the day). Lots of places to buy bags of nettle leaf---I like San Francisco Herb Co. Nettles are kind of like a multivitamin too. Google "Susun Weed and nettle infusion" ---I really like her name.

About Resistant Starches: I don't buy any special resistant starches (I trialled a few in the beginning: potato starch, hi-maize natural fiber, banana flour, plantain flour....). But I really love that I can just boil and cool potatoes (the resistant starch is formed by the chemical process of heating and cooling the starches in the potatoes) and eat them re-heated or cold. Ditto for the rice. I always have cooked and cooled rice and potatoes in the fridge.

For pre-diabetic/insulin resistant issues: I have recently read that Chromium is good for this (I especially like GTF Chromium Polynicotinate) --Andrew Weil.... Additionally, I also have read that L-Carnosine (NOT L-Carnitine) is good as a preventative measure in diabetes.

TUDCA---a very interesting supplement. I continue to take it, but am cycling it. Two months on, two months off... bodybuilders use it to protect their livers from steroids; and more recently, people with Parkinson's are trialling it to slow the progression of their disease.

Buying supplements and costs: I have found it useful to by a supplement I am interested in for my "stack" or "protocol" in the capsule/dosage I want to try, and then if I find it useful and I want to continue taking it long-term I try to find it in a bulk form (Bulk Supplements Inc., Powder City, Pure Bulk... etc). I also have a cheap capsule machine to cap the powders. This process saves me quite a lot of money, and I can still take what I need. Often, if the powder has a mild taste I just put in water and slug down.

To a very healthy year,
Cheers,
Silverseas2014
 
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garyfritz

Senior Member
Messages
599
Can't do full fat, or even moderate -- get RLS every single time -- but am trying to increase it very slowly.
@dannybex, I saw that you have trouble with B2 & B6 -- but do/can you take B12? I've had intermittent RLS all my life, but now it's my first warning signal that I'm low on B12.
 

Sea

Senior Member
Messages
1,286
Location
NSW Australia
Can't do full fat, or even moderate -- get RLS every single time
Have you ever been investigated for a fatty acid oxidation deficiency (FOD) Danny? They are genetic and rare but often missed as a diagnosis and can present for the first time as an adult. Most of them are picked up on newborn screening tests now but they have only been around for a decade or so. Muscle pain and even more specifically leg pain after eating fat is a classic symptom. Some of the mutations can be found in 23andme.
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
@dannybex, I saw that you have trouble with B2 & B6 -- but do/can you take B12? I've had intermittent RLS all my life, but now it's my first warning signal that I'm low on B12.
Yup, I'm taking B12, and every night I take a little folinic. And both do help w/the RLS and cramping/twitching to some degree. But it's this 'venous insufficiency' thing that I think is perhaps the main culprit.

Thanks for your input! :)
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
Have you ever been investigated for a fatty acid oxidation deficiency (FOD) Danny? They are genetic and rare but often missed as a diagnosis and can present for the first time as an adult. Most of them are picked up on newborn screening tests now but they have only been around for a decade or so. Muscle pain and even more specifically leg pain after eating fat is a classic symptom. Some of the mutations can be found in 23andme.

I haven't heard of that, thanks for your input @Sea. Is it an inborn disorder? I used to be able to tolerate it fine -- in fact when I was taking care of my mother 25 years ago I increased my fat intake then and it really helped steady my nerves.

Unfortunately I did the yasko genetics a few years ago instead of 23&me and now don't have the funds.
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
Thanks @silverseas2014 -- I'm taking most of those you mentioned -- the biotin, chromium, and hopefully can get some more probiotics soon. They ARE pricey, and several studies have shown that a few billion in a capsule just doesn't cut it, unfortunately. Makes sense considering we're filled with trillions of bacteria! :)
 

garyfritz

Senior Member
Messages
599
Yup, I'm taking B12, and every night I take a little folinic. And both do help w/the RLS and cramping/twitching to some degree.
If B12 helps, maybe more would help more? There are a lot of us who need quite a bit of B12. Sublinguals &etc just don't do it for me. It takes a lot of the B12 oil to get enough B12 in me to keep the RLS &etc under control.
 

Sea

Senior Member
Messages
1,286
Location
NSW Australia
@dannybex yes they are an inborn disorder of metabolism. They range from severe where infants can die within a few days to mild where problems don't show up until adulthood, or until the system is metabolically stressed by another illness. A genetic test is the only way to know exactly which mutations one has but there are other tests which can point in the general direction. An acylcarnitine profile is a blood test which shows up problems with fatty acid metabolism. Sometimes the result is only abnormal when the system is under stress due to fasting, another illness or a diet unsuited to the person's FOD.
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
Thanks @garyfritz and @Sea: I'm taking sublingual b12 (can't afford the oil). I'll have to look more into the test -- don't think it fits me as I've been sick/stressed for 18 years, but didn't start to have a problem w/fats until about midway through all of this, at about age 50. I'm OLD.