CBS mutations and ammonia---Looking for answers

[rellima]

I was hoping that some of you with CBS mutations who have experienced ammonia issues could give me some guidance on how you corrected the issue so that you could restart the methylation cycle. When I have high ammonia, I get a headache, feel thirsty, get a racing and pounding heart rate and anxiety and can't sleep even though I'm exhausted.

As background, while I don't have CFS, I do have multiple mutations in the methylation pathway (homo MTHFR 1298, MTRR (11), COMT (V158M and H62H), hetero CBS (C699T), AHCY (1, 2, and 19), MTRR ( A66G), VDR (Taq1), MAO A, and NOS) with little functional b12, folate and glutathione, and high homocysteine; but luckily no SIBO or heavy metal toxicity. I am histamine intolerant (so on a low histamine diet), whole foods (so no preservatives or colors) restricted salt, no added sugar, no gluten, no corn and now no high sulfur (thiol) foods. I'm also working on healing my gut (which is not absorbing nutrients and has little flora) with butyrate and probiotics (non histamine producing strains) and will be adding larch soon to aid in this process per my functional doc (who unfortunately doesn't know a lot about CBS mutations).

I tried glycine supplementation for my gut, but that really set off the ammonia reaction, although the butyrate seems to help, sometimes it doesn't seem to be enough. I did eliminate all B6 (5P5) that I was supplementing with since it seemed to put me in overdrive, and also take vitamin D, a mineral supplement (without iron or copper) that includes vitamin C, zinc and molybdenum. Can't tolerate methylB12 and it seems hydroxyB12 will be the way to go for me. I also supplement with magnesium (450 mg, split dosage) and I'm considering switching my magnesium from mag glycinate to mag citrate to help with flushing; but not sure about adding charcoal. Have considered yucca--but heard it increases estrogen dominance which I already have. I'm considering adding Sparga sulfur detox as well, but not sure if this would be helpful.

Any thoughts or suggestions that anyone could provide? Also, assuming that you successfully treat your CBS mutation and are then able to restore methylation, do you have to continue the supplements to control CBS and ammonia?

 

[minkeygirl]

I take Yucca. I am estrogen dominant and haven't notice much of a difference in how I feel, aka still zero libido. I used to have to use OTC progesterone for my estrogen dominance but since experimenting with pregnenolone I haven't need it. I also take molybdenum per my NP which is in my "Only Trace Minerals"

 

[Gingergrrl]

Could someone explain in the absolute most basic terms what are all the different causes of high ammonia on a blood test? Is it only SIBO or other possible reasons?

Thanks in advance for any info.

 

[minkeygirl]

I don't have SIBO. I don't even know if my ammonia is high. Don't know what would cause it.

Since it's nothing to take yucca I am. I haven't it noticed it helping so I may stop when I run out.

Some say it helps with sleep. The opposite for me so I take it in the morning.

 

[wastwater]

I went to the library to see what the text books had on cAMP it mentioned a bit in relation to Ammonia,it said cAMP levels elevated by removal of ammonia via sunlight,activates PKA.I wonder if the sunlight was for vitamin D

 

[ahmo]

Candida can also cause high ammonia.

I've been trying to understand my ammonia problems for weeks. I no longer know whether it's primarily ammonia or peroxynitrite. I'm linking martin Pall's website and s vid where he explains his NO/ONOO- theory. Since finding this info I've become aware that a significant amount of what I'd attributed to high ammonia is actually peroxy. It is somewhat relieved by the same supps as I used to reduce ammonia. I eat a no-thiol diet, very small amounts of meat. That's why I've been seeking the cause. I'm now on a major Candida/SIBO/parasite cleanse, in the hopes that this shifts things.

Adding in Pall's recommendations for reducing oxidative stress/peroxynitrite has been helpful.

I've just written a blog post about my ammonia quest, with links to Pall's work.

http://forums.phoenixrising.me/inde...campaign-the-answer-to-my-ammonia-quest.1701/

http://forums.phoenixrising.me/index.php?threads/new-inexpensive-cbs-ammonia-fix.31835/ Ammonia Inexpensive fix for CBS

Martin Pall website http://www.thetenthparadigm.org/therapy.htm

Martin Pall vid

[url]https://www.youtube.com/watch?x-yt-ts=1421914688&feature=player_detailpage&x-yt-cl=84503534&v=6A7r1gemjto


[/URL]

http://www.thetenthparadigm.org/therapy.htm

 

[rellima]

I no longer know whether it's primarily ammonia or peroxynitrite. I'm linking martin Pall's website and s vid where he explains his NO/ONOO- theory

This is very interesting. Maybe it is not ammonia but peroxynitrite. I'll have to look into this. Thanks for the link!

 

[rellima]

Bump.

 

[kel88]

Rellimafish i was wondering what are you eating? When you avoid al those foods what can you eat? I also want to cut out high sulfur but i cant i dont know what to est beacuse of my allergisch , premium diabetic type 2, fructose intolerant so i dont know what to eat! I also got a CBS mutation!

I will also try molybdenum and yucca and hope that i can try BH4/biopterin

Ive got much the same mutations!

 

[rellima]

Rellimafish i was wondering what are you eating?

Well, not a lot. Mostly freshly cooked unseasoned beef (organic grass fed), freshly cooked unseasoned chicken breast, potatoes (including sweet), squash, carrots, celery, apples, pears, oatmeal, Non GMO rice cereal (Honey Rice twice), organic grass fed butter and organic grass fed milk (although technically the butter and milk are high thiol--but got to have some calories). I am using butyrate instead of yucca to reduce ammonia. Here is the list I am using to avoid high sulfur (thiol) foods: http://www.livingnetwork.co.za/chelationnetwork/food/high-sulfur-sulphur-food-list/ and list I am using to avoid high histamine foods: http://www.histaminintoleranz.ch/download/foodlist/21_FoodList_EN_alphabetic_withCateg.pdf

I think after being on this diet awhile, I'm going to try adding a few foods like melon (which are low histamine and I think low thiol). I've also been able to "cheat" occasionally with high histamine foods with 2 of the Swanson ultra DAOsin pills before eating (i.e., half a banana, or half an avocado). Eating smaller meals is also important, as is limiting fluid intake (water or milk) while eating to avoid diluting the digestive enzymes that are there. I try to limit the meat to once a day due to the amino acid/ammonia link. And, I'm working up to one butyrate per meal (total of 3 a day) to heal gut, feed good gut flora, and degrade ammonia.

Also, I think the big thing I've been missing is hydroxyB12 injections. B12 is essential to process the ammonia and to tolerate the probiotics I need to take to help restore the gut, which will restore DAO and help me tolerate restoring methylation. Everything I'm reading says that when methylation is restored, BH4 will be restored and this is better than supplementation of BH4.

 

[ahmo]

@kel88 I'm also eating an extremely limited diet! For 2.5 years now. .I've found that not only can't I tolerate the high thiol veggies, but all green veg interfere with my folate. So my only veg is carrot. A couple weeks ago I added watermelon, as Pall suggests. But that's proven to be too much sugar. So, no fruits for me. I eat alone, and no longer think about food. I eat the most minimalist GAPS diet: broth, fat, small amounts of meat, only twice a day. + ghee. I think that's it. I'm hoping that my candida cleanse shifts things and I might be able to add in some histamine foods, like a bit of avocado, or something with thiols...But I don't know. If not, I'll then try the 3-day water fast Caledonia did, and see if there's a shift. Or, maybe this is how it is....

 

[rellima]

Or, maybe this is how it is....

Wow, I'm impressed that you have maintained this diet for 2.5 years! However, I hope it will not be this way for you, or any of us forever!

 

[ahmo]

@rellimafish Yup. What I forgot to add is that there's a whole group that are gluten cross-reactive, and another whole group, including nuts and seeds, that are autoimmune stimulating. Gluten cross-reactive will, presumably, always be out. But I'm hoping that the need to stay away from the autoimmune list shifts.

 

[kel88]

Pffff do you both have such a terrible dieet... But when you est that less of all food ... Do you have low vitamins and minerals right? Ohhhh i love food! But in also react on everything! But i cant live on broth and water pffff ... I become so more depressed when i think about it... I think all choose for more pain that i can eat something than eat nothing anymore

 

[ahmo]

Do you have low vitamins and minerals right?

No, not low. I supplement. I'm not depressed or upset, because from the beginning of starting the GAPW diet to now, I've continued getting better and better, higher functioning, less distress. Changing my mental space about food and eating has been a part of it.

 

[rellima]

No, not low. I supplement. I'm not depressed or upset, because from the beginning of starting the GAPW diet to now, I've continued getting better and better, higher functioning, less distress. Changing my mental space about food and eating has been a part of it.

I agree with ahmo. I supplement too to avoid nutritional deficiencies. And while, yes, I would prefer to be able to eat more foods, I feel so much better on the restricted diet that gets rid of the horrible symptoms caused by high histamine and sulfur/ammonia (heart palpitations, anxiety attacks, insomnia and dysautonomia). As ahmo says, it is about changing your attitude about food; it is hard--but worth it.

 

[kel88]

Wauw i think its so good from you guys! I would like also a diet what would help me... But because i dont know where i react to so i dont know what to change. Ive got lots of food allergies i dont take.. And frucotse intolerant... Now i have to look to low sulfur i think! The problem is i cant take food or sort sugars.. And ican not eat a lot of carbs because of the diabetic ( type 2) so its so very hard ...

Can any of you tell me how youre diet is looks like for one day maybe

 

[rellima]

Can any of you tell me how youre diet is looks like for one day maybe

For breakfast: Rice cereal with milk, apple for snack; Lunch: grilled unseasoned chicken breast, baked potato with butter, squash; pear or organic potato chips for snack; Dinner: Oatmeal cereal with milk, a few raw carrots and on a good day grapes and/or another pear or apple.

 

[rellima]

Also, you start by eliminating everything on the high list. Then, after a couple of weeks, you can try adding back in other foods you might tolerate, in small portions one at a time, wait four days, and then if no reaction you can add that food back in.

 

[brenda]

Breakfast

Chia seeds soaked overnight in coconut milk or water. Coconut nectar to sweeten. Cinammon to flavour. Nuts and seeds. Camu powder in water for vit c.

Lunch

Pressure cooked chicken with vegetables and gravy made with arrowroot. Could use blended vegetables instead to thicken gravy.

Evening.

Sprouted brown rice protein in coconut milk or water or any non dairy milk to make a smoothy.
Dried wheat grass powder in water.
Hard boiled egg in slice of buckwheat 'bread'