nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I got my test results and sent them to Heartfixer. I finally got them back about a week ago. It took 3 months to get the test results and another 3 months for his analysis. I had pretty much figured things out on my own but he tweaked it a little bit.
My base problem is the CBS homozygous mutation with BHMT heterozygous mutations compounding the effects. This means I cannot tolerate sulfur, make too much ammonia etc. Although I also have trouble converting B12 and folate to their usable forms, I can't use the methyl supplements until I correct this sulfate problem.
I have been trying to do the first step literally for five months and have gotten no where. I have urine test strips and my sulfate remains as high as it gets. In order to lower the sulfates I have to eliminate all sulfur containing foods and supplements.
To lower the ammonia and also to follow Dr. F's low fat vegan diet, I have eliminated animal products as well as nuts, seeds, avocado etc. Then the sulfates require me to eliminate soy, garlic, kale, spinach, cabbage and onion. I am also supposed to eliminate foods high in glutamate including peas, mushrooms and tomatoes. Darn near impossible unless you eat nothing but plain white beans and rice.
Is anyone else dealing with this and getting frustrated? I am feeling much better but I don't know if I will ever be able to get my CBS mutation under control.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Nefferdun,
Are we twins? I have the same problem with the CBS double mutation and it is nearly impossible to work with. Everyone keeps saying I need this that and the other supplement, but when I look at ingredients, it has something in it with sulfur, sulfites, or too much B6...
The biggest help for me is to take lots of molybdenum and B12. I use Thorne Research Molybdenum - it has 1000mcg per capsule. I can always tell when it is time for my next dose...
Also, I find help for the ammonia issue by taking Yucca Root daily - I buy the bulk powder from mountainroseherbs.com, and have measuring spoons devoted to use with my medicinal herbs so I always have the spoons available to measure out the herbs when needed.
And yes, the diet is insanely limited. There is a small handful of foods that aren't on one of the "no" lists...
I have to wonder if the infections are also contributing to difficulties with getting a handle on this methylation stuff. I know Lyme generates a lot of ammonia itself, and I have to wonder if other coinfections also do that.
So yeah, I share your frustration.
Cyberhugs,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Razzle, do you have the test strips? If so, what is your reading? How do you know the molybdenum is helping you? I take molybdenum every day. I also take hydroxy B12 neuro health formula, phosphytidleserene, folapro, GABA, NADH, CoQ10, carnitine and just ordered Folinsic.
I use the Ammonia RNA support. I was taking charcoal at night but I started getting insomnia and quit. I took a bottle of yucca but quit that too when I ran out. How do you know it is lowering your ammonia levels?
I wonder if the B vitamins, which turn your urine orange, might affect the color of the test strips which turn from pink to orange when your sulfate is high. It is just too frustrating to think I can't get this down at all. It is still 1600.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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canefan17
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Member # 22149
posted
Yuacca root and treat parasites.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Yucca is supposed to reduce ammonia. I took it until I ran out. Did not reorder but I am taking RNA Ammonia Support. What about sulfates? Is anyone else testing their sulfates?
How is everyone else doing that did this test? Any changes?
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I admire that you did all of this but I don't know if I would go this far with things. Can you really tell that it's helping & not some other aspect of your treatment?
I learn alot from your posts. Keep doing what you think is correct.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I'm really happy to hear you are feeling better Neff. It sounds like there is something missing, though otherwise your ammonia would drop. Maybe you're already doing this, but I found the link below--citrus (hope it helps).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
I have the CBS gene too and for me it is a major problem. I am working with a dietician who told me the best foods to eat when you are trying to avoid sulfur are: carrots, green beans, zucchini, celery, sweet potatoes, white potatoes, yellow potatoes, blue potatoes, avocados, beets, pumpkin, yellow squash, fresh sweet peppers, okra, wax beans, fresh basil, thyme, rosemary, fresh ginger, tumeric, apples, apricots, cherries, asian pears, pink grapefruit, peaches, pineapple, lemon, fresh dates, dark chicken meat, beef, wild venision, elk, buffalo, turkey, trout, rabbit. almonds, cashews, walnuts. These are some of the things I was told to eat. One thing we found was it can depend on the soil and the fertilizer. But these are the things I was told to eat.
Posts: 140 | From Illinois | Registered: Jul 2009
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I haven't had my ammonia levels tested. High ammonia goes with the CBS/BHMT mutations. I should get it tested to find out where it is. The doctor said it would be easier to lower the ammonia than the sulfates. Protein produces ammonia, especially meat which I do not eat.
Here is a stie I found today with sulfur levels in foods. I am so glad I found this as it clearly shows what amounts foods have. Meat is very high in sulfur so heartfixer advises not eating any animal products.
I am still doing well especially considering where I was a year ago. I had to stop taking the stomectol (ivermectin) every day because it gives me headaches. I need to take it to keep symptoms away so I am currently taking it every 3 days or so. Other than LDN and the supplements, that is all I am taking.
I usually relapse in winter so I don't consider myself out of the woods yet. I will probably add in doxy in a month or so because it increases the effectiveness of the stromectol. I can't handle drugs very well so the diet is critical.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
razzle, is the molybdenum picolinate the one you're taking?
Posts: 857 | From northern california | Registered: Dec 2009
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Heleneh, the list your dietician gave you is good with a few exceptions. These foods are high in sulfur: turmeric, pineapple and any kind of meat. Almonds and walnuts need to be eaten in very small amounts as they also have sulfur. Peanuts are extremely high.
You can add eggplant, yams, pumpkin, bulgar, rice, honey, arrowroot, tapioca, oranges, bananas, lentils and beans (especially white beans). Beans and lentils have more sulfur than the vegetables and fruit but they are necessary for protein and they are much lower in sulfur than any kind of meat. Avoid soy.
Eggs are very high. Tea and coffee are high. Cabbage is very high. I was eating a lot of oatmeal believing it was safe but it is actually high. Whole wheat is high so you need to limit it.
If you have the CBS and or BHMT mutations, then you probably also have mercury toxicity as a result of low glutathione production. In blood work your homcysteine levels will be low or low normal. You probably react to red wine - get headaches.
The sulfates and ammonia cause a number of issues: Low energy, fight of flight response (anxiety), low dopamine and serotonin (worry and insomnia) reduced nitric oxide resulting in constricted blood vessels (headaches, heart disease, sluggish circulation) and low glutathione production (disease, build up of heavy metals).
You cannot supplement methyl groups before you reduce the sulfates or you will just add to the problem. That is what worries me. This is where you begin - not MTHFR or some other mutation. This is where the door opens.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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