Does anyone pay attention to diet?

[Chameleon]

I have noticed that vegetables in the nightshade family (tomatoes, potatoes, all peppers (except the kind that go in a pepper grinder) and eggplant make my throat tighten up and affect my balance. Has anyone else noticed anything like this? Any other foods that tend to exacerbate symptoms?

I understand that the liver, which performs about 50-odd functions in the body, is often in rough shape in PALS and needs to be supported. My naturopath told me I should take 3 capsules of a supplement called Body Guard. I notice that since I started taking in (about a month ago),I don't "crash" and have to lie down and rest as much as I used to.

I am also taking a metal chelation supplement, as I am very high in mercury, lead and cadmium. I'm doing a few othere things too that I'd like to talk about and compare notes with others. Am I in the wrong part of the forum for this kind of conversation? I don't see much about what people are doing to help their condition... Is this useful?

Cheers-
Heidi

 

[abbas child]

Heidi, no, as far as I know, you aren't in the wrong part of the forum. If you are, one of the moderators will likely "move your post" (still having the title right here, but when clicked on, will get the message in the new area).

I think the lack of response is primarily due to having already tried some of these things--although the nightshade family of vegetables causing a problem for you is something new to me! And your actually showing high levels of mercury and other minerals/metals means you may well be helped in ridding your body of them. I was tested and am normal regarding those. I don't mean to discourage you, just tell you that most of these things do come up repeatedly. That said, it may well help someone else!

 

[Al]

Hello Heidi. I haven't noticed problems with any foods. As far as the liver is concerned ALS doesn't hurt the liver directly but if you take Rilutek you should be tested because in some it can cause problems. If the supplements aren't costly and you feel better, go for it.

AL.

 

[Chameleon]

Thanks for your replies!

No.I don't take Rilutek or any medications. I'm of the opinion that my body wants to be well, so I'm focusing on doing everything I can to ensure that I remain as healthy as possible. I eat organic foods if at all possible and no sugar, dairy, alcohol or gluten, as they are hard on the liver. Because I am high in heavy metals and am detoxing with chelation, the liver is carrying a pretty heavy load, so I'm avoiding foods that make the liver work harder, so although ALS doesn't cause liver damage, it's smart to ensure that with the liver remains healthy as far as I can tell.

Has anyone had any luck with glutathione treatments? Or DMPS/Procain injections? Or homeopathic remedies? I'm still walkin' and talkin' and would love to stay that way. Those of you who aren't may be shaking your heads and think I'm clutching at straws...but you were likely here once - anything helpful at all?

Cheers-
Heidi

 

[bobkerry]

i dnt think this directly hurts liver. but it depends on the amount too. if you take it in heavy amount then your liver can be directly affected so try to take it in less amount and make sure that you are taking healthy food too...
healthy food depends on your diet too. try to take healthy food

 

[hope1]

hi,
Please let us know what the Chelation suppliment is. I am interested in that. The high Fat diet is in trial as we write... fat may protect the cells.

 

[Marjorie R. Wilcox]

Rick has slow progression. We wish we knew why so we could share it with all of you. All I can say is that he has been on a special diet for his diabetes for 5 years now. He healed a horrendous injury to his leg, caused by an explosion. The surgeon marveled at his ability to heal so well, and the leg was saved. We think the diet also contributed to that too.

He doesn't take any meds or insulin. He doesn't eat any white flour... that includes the breads that you buy that are "brown" (which are half white). He doesn't eat pasta or rice. He doesn't eat artificial sweeteners. We make recipes with whole wheat flour and substutute concentrated apple juice for the sugars. He snacks whenever he wants, but makes choices of proteins to measure equal in portion with the carbs. He never craves. He never feels lightheaded when he goes a long time between meals. His numbers are in the normal range (his A1C was 5 the last time) and his blood pressure is now so good that he doesn't take meds for that anymore. The progression for his ALS is minimal for having been diagnosed 3 years ago. He eats nuts and no salt,no sugar peanut butters every day. He doesn't take vitamins, but eats a high protein diet with plenty of vegs and fruits... homemade whole grain breads and real butter. Eats plenty of eggs. Plenty of lean meats. He eats a potato every day for B6 and 12. His cholesterol count is 100. ...... We can't help but think that his good health is attained by his diet..... I might add, he weighs 262 at 6'

His ALS symptoms are... imbalance, severe sleep apnea, partial paralysis, difficulty swallowing, memory gliches, weakened legs, sensation loss, stiffness, inability to squat, stand on one foot, close his eyes without falling over, likeliness to fall. and more.....

 

[davidtanderson]

Hello Heidi,

I am recently diagnosed and am on a simliar treatment path. Detox (w/ protein supplements to keep weight up), diet (gluten, caffeine, sugar, alcohol) energy and body work. I'm also going to a clinic in China that has specialized in treating ALS with TCM over the last 6 years with some documented success. This will add daily deep acupuncture, chinese herbs and deep tissue massage to the mix. It is my intention to bring the treatments back home and work with local practitioners to sustain any improvements.

I know by reading through these forums for the last few months there are those who believe these are extraneous treatments and don't have much confidence in their efficacy. I also realize I'm a newbie, so I 'm willing to be wrong. But I thought I'd post to let you know there is another looking at it the way you are.

Best regards and deep healing,

-dta

 

[Chameleon]

HI David-

Thanks for your post. It does get discouraging, hearing (valid) complaints and (understandable) concerns and not seeing much about interesting ideas or treatments. I want/need hope these days, and for me that means finding something useful to do that might help.

Diet is within my control and I'm sure that eating well is helpful - good digestion and elimination is imperative, both for absorbing nutrients and getting rid of toxins such as the metal we are working on chelating out. The chelating agent I'm using is called Captomer - described as the most gentle but also a highly effective product.

Please let me know the clinic in China you are talking about going to. I am keen to hear how it goes and of their accomplishments!

Cheers-
Heidi

 

[arobertson]

Does anyone take mineral pHactor? My dad is on it and it is supposed to help get rid of toxins......I'm just making sure it's not hurting him in any way! Thanks!

 

[arobertson]

Oh and Heidi, my dad is going about this the chinese way too with doing acupuncuture and taking their herbs.

 

[Chameleon]

Hi arobertson-

I haven't heard of Mineral PHactor. Besides Captomer, I take a Japanese product that is powdered bamboo carbon. My Coorado naturopath recommended it as a metal chelator. It is purported to absorb toxins of all kinds. I take 1/4 tsp 2x/day. I also take another product made by the same company - to detoxify and strengthen the liver.

 

[Sequoia]

Has anyone had any luck with glutathione treatments? Yes! I am taking a supplement that helps the body produce its own glutathione.
It is approved by the FDA and endorsed for use by atheletes. I am a strong believer in anything that helps the body do what it needs to do in order to stay healthy. Of course it is not a cure for anything, just a supplement that has been proven to get into the cellular level where it can really do some good. I know others have had injections and would like to hear of any good results.

 

[SueG]

Everyone has to find their own path with this disease, so this thread is interesting. Me, I am leery of chelation and do take rilutek-- my diet focuses on getting enough healthy calories so I keep my weight up- for me that means lots of full-fat dairy, eggs, meat & fish, mostly whole grains, peanut butter, fresh and home-preserved vegetables (I have an organic market garden on the side, which I'm going to need lots of help with next year!) and eating many times during the day. Blueberries and home-canned applesauce & pears. We get as much of our meat and dairy from local and natural or organic sources. I stay away from highly processed foods, deep-fried foods, and no high fructose corn syrup (gotta read labels). I make it a point to enjoy all my food and the company of whomever I am eating with--while I can still swallow . Oh, and yes to wine. My liver fx is checked monthly. Vitamins and an antioxidant supplement to top it off. Oh, I'm hungry!

 

[BarryG]

All I have to say on the topic of diet is: Eat as much good healthy tasty food for as long as you can because once you can't swallow the process of feeding yourself is all function and no fun. No taste and no texture = boring to the max.