creatine

I have a good friend who suffers from a rare disease, and what it does, is create 200times the amount of creatine in the body. So his muscle mass is gone, since his body eats his muscle. can't even lift a gallon of milk. i was wondering if there were any natural ways to slow the body's production of creatine. He is such a good person. The medicine he is on suppresses the immune system and was helping, given he gets sick all the time now, but now the medicatiisn't working anymore. Is there anything he can do/try? I really want to help him.

originally posted by: neomaximus10
I have a good friend who suffers from a rare disease, and what it does, is create 200times the amount of creatine in the body. So his muscle mass is gone, since his body eats his muscle. can't even lift a gallon of milk. i was wondering if there were any natural ways to slow the body's production of creatine. He is such a good person. The medicine he is on suppresses the immune system and was helping, given he gets sick all the time now, but now the medicatiisn't working anymore. Is there anything he can do/try? I really want to help him.

i'm not sure yet, but i will research this for you. does it effect his nervous system or is it purely attacking muscle tissue? if it starts as a nerve issue, i have a solution. if not, then will research further

here's a link that describes how to reduce creatine via diet. the interesting part is it discusses how it's related to kidneys! does he have kidney disease???
www.simple-remedies.com...

a reply to: neomaximus10

Google "How to maintain Creatinine levels naturally" there are many articles on it.

My best friend died years ago due to kidney failure and 2 transplants, and when I saw the term "creatinine" it set off some bells.

Here is one of many articles I found.

I wish your friend the best in beating his disease!

Link

a reply to: seeker1963

from your link i learned some new info. thanks.
i didn't know vanadium could effect creatine levels. i take vanadyl sulfate (vanadium) to control blood sugar, in tiny amounts, mind you, but that's good info.

I knew how to fix that from studying the problem in Genetics over the last couple months. I got to quit researching till two in the morning though. I have forgotten which chemistry to add to the diet to help break creatine down. I should write these things down for my own reference. I haven't written anything down in all my studies, one brain fart and all this research is gone. Oh well, I learned that writing down things means they need to be erased later because new research modifies my perception.

If he lowers consumption of things that contain high levels of stuff that metabolizes to creatine it will help. If he/she drinks more coffee, it will increase urine output. Increasing foods high in molybdenum may help to increase processing of the nitrogen compounds even though the gene is a problem that is causing this. Genes do not work alone to cause disease, often they share microarray genes with other pathways. Also, there are sometimes alternate metabolic pathways that might help to slow production. This is where I come up with molybdenum.

Is your friend craving anything special?

a reply to: rickymouse

but if it's related to kidney malfunction (and he hasn't clarified yet what it is), then some foods rich in molybendum (like beans) will include high levels of potassium, thereby causing a different set of problems for the kidneys. it's like a delicate balancing act.

i'm currently drinking selzter water (sodium carbonate) with lemon juice squeezed in, and a bit of gatorade for electrolyte replacement. the sodium carbonate removes excess potassium but has the effect of dehydration, so i have to rehydrate with the gatorade, but the gatorade is full of sugar which effects my diabetes that causes the problem in the first place, so then i have to reduce blood sugar. lol

man it's like a car with worn out parts

a reply to: undo

Normally increasing certain sulfur foods can help the kidneys. Milk thistle is a good supplement for the kidneys and it is a sulfur based medicine. Boosting the molybdenum helps the body detox sulfites that are formed and also nitrates and nitrites. It also can help with processing acetelaldehydes and can help strengthen the mitochondria function.

Too much acetelaldehyde will take out the liver and kidneys and it gives you headaches. Sulfite levels being high will also kill of organs and also give headaches. Nitrogen compounds need to be correctly dealt with or they can cause a lot of varying problems. There is a lot of nitrogen in creatine, this has to be expelled from the body so trying to get the kidneys up and running may mean eating some more sulfur foods which compete with the other compounds that the MOCS1 gene supplies enzymes for. Now too much molybdenum is also not good and copper, selenium, and zinc should be supplemented too, but some foods like wheat germ contain a lot of these minerals. Not good if a person can't tolerate wheat though. Recommending wheat germ, which can have a lot of side effects for some people, is kind of iffy. I just add a tablespoon full to my bread. Molybdenum can cause kidney stones if it is added too fast as it starts increasing the body to rid itself of many things.

Like you said, it would be nice to know what kind of kidney problems the person has. I hate giving info out that could make a person start jumping up metabolism and cause more problems. Supplementing no more than a hundred percent RDA at first is about all I would say is proper. I only take about 150%RDA myself and I started with a smaller amount of a less active kind.

a reply to: rickymouse

oh i love your depth of info. fascinating. i did some indepth research as well but almost exclusively on how to limit kidney damage caused by diabetes. this resulted in a diet low in potassium and phosphorus, which i unfortunately, did too well, which caused severe dehydration, heart palps and the whole schebang. the research indicated that the higher the fiber content of the food, the higher the potassium and phosphorus, leading to the awful conclusion that the only kind of grain bread that would be safe to eat on such a diet would be various types of white breads, like french bread, english muffins, bagels and normal sliced white bread. yeah, i know that's not good but a lady's gotta eat .

i ended up with no beans, no grains other than white breads, no bananas (cry), no dairy products other than cheese, cottage cheese or cream cheese. no red meat, no pork. only chicken and turkey in the meat category. and even that in limited amounts. only type of peppers allowed were red peppers. no avocado (ughhh!). but i could have "cream of wheat", which i don't mind telling you, has no flavor whatsoever. then my seltzer water regimen, which just launched the whole thing into hyper-dehydration. took me a bit to figure out what went wrong lol

so ideally, if the person has kidney issues, the best approach would be to supplement molybendum not try to derive it from foods or find foods that have the molybendum without the high potassium content?

p.s. i thought milk thistle was a liver herb not a kidney herb? i take several anti-oxidants. not megadoses, but several different kinds. like alpha lipoic acid, grape seed extract, resveratrol, reishi mushroom, in an effort to slow damage to my other organs from my diabetes. i also supplement methyl b-12 to stave off neuropathy (that stuff is miraculous). do any of those sound like they might negatively impact kidneys or throw something off, metabolically?

a reply to: undo

It's nice to chat with someone who actually tries things and notes the side effects of changes that occur. Many people get caught up in feeling better innitially then can't comprehend what happens later on as being related to what they did. I had side effects from lots of self testing and studied to see why they were occurring, this is the only way we can correctly start to comprehend how things effect us.

I would have thought that the phosphorous and potassium in whole grain breads would have been bound by the Phytates and not be able to be taken in. But I could have been misled by some of the articles I have read on the multiple problems with wheat and grains.

One of the problems you have may be a different one. Now avacados and bananas along with milk share similar chemistry. They are a class one Chitinase if I remember properly, a sort of latex food intolerance. I can't consume class one and class two chitinases in the same day. Not a problem when you understand it. No bananas when I eat any tomatoes or potatoes and I don't have a problem. I hate avacados so that never was a problem.

It is important to understand why they started bleaching flour long ago. The English found it helped their people to do so for a couple of reasons. It made the starches more bioavailable and it neutralized some of the toxins from the Rye grains.

Now here in the US they actually enrich the flour but we use nutrients from microbes which some people cannot tolerate. I guess they figure ten percent of the people having problems with these added B vitamins is allowable if it helps forty percent of the people who do not eat right. So people who eat crap make some who try to eat good sicker. I think that is called the Western diet. They need to remove the germ, which is full of nutrients, so the flour does not go rancid. They could process this germ into an enrichment but choose to make cereals out of it and feed it to livestock instead to enrich their foods. They then use the vitamins created by brewers yeast I think to treat the bread with.

Try to remember what you ate or didn't eat when you were healthy. I try to do this. I used to eat bananas in the summer and potatoes in the winter. I started eating things that I wouldn't eat before when I got married, I wanted to eat the foods my wife made. Now she would never eat some of the foods I eat yet I chose to get used to her foods. When analyzing the DNA and checking on the differences in our genetics I found that what she likes she should eat to match her genetics most times. Now, what she eats does not match the variants in the genes I have. I could have had a lot more energy and less whole body inflamation if I would have kept eating what I did before we were married. But I am still alive, she didn't kill me. Now since I have identified many things that trigger my autoimmune diseases, I avoid them and I cook. I make extra so I can make what she needs and what I need. This isn't really a problem now that we are both retired.

There has to be a trigger that causes the person in the OP to make creatine at such high levels. There are inducers of enzymes and also things that will reduce the enzyme activity. Sometimes just changing the diet a little can help but there is no way for anyone other than the person who is having this issue to test for this concept. We can give possible ideas but can't know if it will work or the side effects.

originally posted by: undo
p.s. i thought milk thistle was a liver herb not a kidney herb? i take several anti-oxidants. not megadoses, but several different kinds. like alpha lipoic acid, grape seed extract, resveratrol, reishi mushroom, in an effort to slow damage to my other organs from my diabetes. i also supplement methyl b-12 to stave off neuropathy (that stuff is miraculous). do any of those sound like they might negatively impact kidneys or throw something off, metabolically?

Thistle detoxes the liver and then the liver detoxes the other organs. If the liver slows down to protect itself, the other organs suffer. That is how thistle can detox the kidneys. A multistep process. These organs work together all day long and share communication through certain pathways.

which added b-vitamins are people having trouble with? and would you clarify whether it would better to just supplement molybendum or derive it from foods that are low potassium? or do you think the potassium kidney problem is a bit more complicated than just removing potassium from the diet? like if the op's friend were to take molybendum do you think that would auto-solve the potassium issues in kidney failure?

as far as my diet when healthier - i was a sugar freak. fruit sugar being one of my favorites. so fruit fruit fruit fruit, deep breath, fruit fruit fruit. cheeeeese. fruit fruit fruit fruit. fruit pie. fruit candy. some salt. repeat. doesn't sound like i was eating right even then. in the category of food sensitivities, anything in a shell, which is argued could be either iodine related or chondroitin related. can't eat eggs or nuts or shellfish.

p.s. my hubby can't take hawthorne berry, and he has blood pressure issues, cholesterol issues and an enlarged liver. i mean, he can take it, but it makes him feel bad, like it messes too much with his blood pressure, makes his "heart hurt", he says. any idea what would cause that? it's not even very strong hawthorne berry. (just curious if you have encountered that before. i think this also would be useful for the op's friend to know because if his kidneys are failing, it's gonna stress his heart.

originally posted by: undo
which added b-vitamins are people having trouble with? and would you clarify whether it would better to just supplement molybendum or derive it from foods that are low potassium? or do you think the potassium kidney problem is a bit more complicated than just removing potassium from the diet? like if the op's friend were to take molybendum do you think that would auto-solve the potassium issues in kidney failure?

as far as my diet when healthier - i was a sugar freak. fruit sugar being one of my favorites. so fruit fruit fruit fruit, deep breath, fruit fruit fruit. cheeeeese. fruit fruit fruit fruit. fruit pie. fruit candy. some salt. repeat. doesn't sound like i was eating right even then. in the category of food sensitivities, anything in a shell, which is argued could be either iodine related or chondroitin related. can't eat eggs or nuts or shellfish.

Cyanocobalamin isn't the best source of B12. It gives you energy because the cyanide compound ties to the thyroid but it is better to get your B12 from meats or bacteria fermentation for some people. The cyanide unbalances the thyroid and can lead to a problem later with thyroid issues. A small dose is not harmful in a vitamin pill but add that to the flour enrichment and it could be a problem. Also the B vitamins added have some traces of the yeast that they are derived from which increase inflammatory response in some people. But just people with an overreactive immune system. It isn't usually a big issue, it does effect some people though. They usually don't eat many breads and don't have a problem.

You can bring down potassium levels with niacin containing foods. Hot peppers work fine. You have to wonder if that is the reason that the person though, I do not see anything about potassium levels being high. Usually Sodium makes the body retain water and adding potassium to the diet helps to balance it and you pee. low sodium levels usually make you dehydrated, not high potassium levels. Potassium works in the cells to shuffle things in and out, salt works in the rest of the body to help shuffle things. If sodium is low, the cells dump the garbage in the body outside the cells and it builds up or the cells get engorged and swell up while the fluids in between get dehydrated. Niacin will also neutralize the methyl groups. Caffeine is a methyl donor. Along with the fluoride it helps you pee. I hope I explained that right, I have a hard time explaining these things because I feel so many people are against salt nowadays that they can't fathom how critical salt is in our bodies.

Being that they were treating this with immune system suppressants, I think there may be a lot more to this than the OP knows. It sounds like an autoimmune issue where the body is breaking down muscle and leaving out creatine. Dampening the immune system might be needed. I'm not sure how to do this in this situation.

a reply to: rickymouse

yeah definitely complicated! have to be so careful not to create side issues. alternative therapies need to make up for where traditional medicine leaves off. i take methylcobalamin (methyl b-12) for my diabetic neuropathy. it solved it completely in just a couple days and before that, i was like the op's friend and couldn't even raise a cup to my mouth - nerves were dying in extremities. i'm telling ya, that is a miracle. it's apparently b-12 that has an enzymatic reaction done to it in the lab. your body normally does that on its own unless something is wrong, which can be caused by genetic problems like autism, diabetes or just old age, when the enzyme is not as prevalent in the body.

as a result, i don't get infections from cuts and so forth and no pain in my extremities at all and this is like over 10 years later. but since its water soluble, you have to keep taking it. i take 5000 mcg, once every 3 days so it's low cost considering how long a bottle can last at that rate. kids with autism have had treatments with it, intravenously, and became almost entirely normal. miraculous, really. i imagine it might even solve for some issues in the elderly, since whenever a normal function slows down, it usually preceeds degradation in health and life of the cells.

i'm not sure how my seltzer water (sodium carbonate)/lemon thing, actually worked to remove potassium, but i was definitely not retaining water in the intracellular spaces or out, for that matter. i know how dehydration due to fluid retention (swelling) feels, and it wasn't that! lol it was more like water went bye-bye.

Wow I didn't expect so many replies so fast, I will talk to my friend tomorrow and get more info from him, he will be thrilled with everyone's input, again, thank you everyone for taking time out of your lives to help and shed some light on this issue.

originally posted by: undo
a reply to: rickymouse

yeah definitely complicated! have to be so careful not to create side issues. alternative therapies need to make up for where traditional medicine leaves off. i take methylcobalamin (methyl b-12) for my diabetic neuropathy. it solved it completely in just a couple days and before that, i was like the op's friend and couldn't even raise a cup to my mouth - nerves were dying in extremities. i'm telling ya, that is a miracle. it's apparently b-12 that has an enzymatic reaction done to it in the lab. your body normally does that on its own unless something is wrong, which can be caused by genetic problems like autism, diabetes or just old age, when the enzyme is not as prevalent in the body.

as a result, i don't get infections from cuts and so forth and no pain in my extremities at all and this is like over 10 years later. but since its water soluble, you have to keep taking it. i take 5000 mcg, once every 3 days so it's low cost considering how long a bottle can last at that rate. kids with autism have had treatments with it, intravenously, and became almost entirely normal. miraculous, really. i imagine it might even solve for some issues in the elderly, since whenever a normal function slows down, it usually preceeds degradation in health and life of the cells.

i'm not sure how my seltzer water (sodium carbonate)/lemon thing, actually worked to remove potassium, but i was definitely not retaining water in the intracellular spaces or out, for that matter. i know how dehydration due to fluid retention (swelling) feels, and it wasn't that! lol it was more like water went bye-bye.

I have a problem where I excrete too much sodium. I have known of this for quite a while and I make sure I add salt to my food. I was surprised to find that there are a couple of genes that regulate that, and I have both of them. One gene mutation makes it so I pee out my minerals because the angiotensin hormone that retards the kidneys from excreting things, coming from the pituitary gland, is running at about half speed. Another gene that governs reuptaking sodium from the kidneys doesn't work well so my urine is salty. When I am in the normal range if my urine is tested, I am weak. No problem, I just need to add salt now that I no longer eat many chips or salted in the shell peanuts or beer or soda. I started eating home made food and reduced my salt intake and was very weak. If I add more salt to food, I do not crave food as much. I need the salt and will eat till the need is fulfilled.

I take the methycobolamin also, I have been taking it about once a week for a couple of years. If I take it before going to sleep, I sleep really good and feel great in the morning.

I take a big multivitamin once a week and it contains the Cyanocobalamin. I can take that once a week no problem but if I take it more than a couple times a week it has negative consequences. I am not sure if it is the B12 but I know I can't take that every day.

originally posted by: neomaximus10
Wow I didn't expect so many replies so fast, I will talk to my friend tomorrow and get more info from him, he will be thrilled with everyone's input, again, thank you everyone for taking time out of your lives to help and shed some light on this issue.

Find out the name of the disease and I will run a gene app to find out what gene it entails. I can check on the information on the gene and find out on how the process is altered. I may not be able to completely understand how it feels if I do not have a reduction in the enzyme that controls it, but I can find out as much as I can about it. Then I might be able to backwards adapt it to what stimulates or inhibits the creation of the enzyme and find it in foods.

Now I was just discussing methylcobalamin with Undo. If your friend is having problems with B12, he may be canabalizing his muscle to get the B12 to supply his heart with what it needs. The blood tests will come out normal because the body is getting it's B12. The methyl B12 has a methyl donor which is needed to process it right also. Coffee, tea, eggs, cooked spinach, and beets are good methyl donors. Molybdenum helps to process acetelaldehyde into acryl coenzyme A which helps to increase energy by breaking down ketones for fuel for the body I think. Now if your friend has a problem either way with this, there might be a problem, this is what usually causes drinkers to waste away. You do not need to drink to have a problem with this enzyme though, other things trigger the production of coA or restrict it's development.

It would be nice to know what medicine they were using so I can figure out what they thought was causing it. I am sure they tested for things to know what was happening. There might be an alternate path to check out if that didn't work right, it might take me some research to find it though.

I can only give you some ideas so your friend can approach a doctor with a possible idea to try. I'm not a doctor, only someone who likes to study metabolic issues and pathways.

A person has to have something to do or you go nuts. Just because I can't work anymore doesn't mean I can't learn new things.

a reply to: rickymouse

wowzers. that is so nice of you to do and i really appreciate the time you've invested in researching all this. it would be awesome if you could come up with something to help his friend. i'm sure he's at the stage where any improvement would be welcome and if you're right about molybdenum, what a godsend solution.

do you recommend it for people with kidney problems in general? you mentioned processing/removing ketones, so i was guessing that it would at some level, be beneficial for diabetics, as well.