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Put on your tinfoil hats - Nystatin "cures" TS?


guy123

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From here:

 

http://www.raysahelian.com/tourettessyndrome.html

 

From like two thirds of the way down the page:

 

Q. My son was cured of Tourette's nearly two years ago. He was severely affected, having motor tics from head to toe, echolalia, screams, barks, throat sounds, squeaks, you name it. He became symptomatic at age 6. He is now 8 1/2. He was treated with nystatin and diet change. We attribute the explosion of symptoms to repeated long term antibiotic use as well as use of steroid medication around the same time. He again became symptomatic during treatment with antibiotics one year later, but symptoms resolved with nystatin treatment entirely. Here is a full report:

My son is not the only child to be successfully treated this way. Another mom in Canada had a son with Tourette's syndrome who recovered without other meds. Another mom in NY has just started nystatin on her son, as well as diet, and for the first time in years he has gone days at a time with few or no tics. He has only been on treatment for less than one week! Here is my son's full history:

 

No clue what the source is for this page. Sounds kinda hokey. It's possible the kid outgrew TS at the same time he happened to start the medicine.

 

What is Nystatin and how does it supposedly work on TS?

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From here:

 

http://www.raysahelian.com/tourettessyndrome.html

 

From like two thirds of the way down the page:

 

Q. My son was cured of Tourette's nearly two years ago. He was severely affected, having motor tics from head to toe, echolalia, screams, barks, throat sounds, squeaks, you name it. He became symptomatic at age 6. He is now 8 1/2. He was treated with nystatin and diet change. We attribute the explosion of symptoms to repeated long term antibiotic use as well as use of steroid medication around the same time. He again became symptomatic during treatment with antibiotics one year later, but symptoms resolved with nystatin treatment entirely. Here is a full report:

My son is not the only child to be successfully treated this way. Another mom in Canada had a son with Tourette's syndrome who recovered without other meds. Another mom in NY has just started nystatin on her son, as well as diet, and for the first time in years he has gone days at a time with few or no tics. He has only been on treatment for less than one week! Here is my son's full history:

 

No clue what the source is for this page. Sounds kinda hokey. It's possible the kid outgrew TS at the same time he happened to start the medicine.

 

What is Nystatin and how does it supposedly work on TS?

 

 

I am starting my son on nystatin tonight so Ill let everyone know if its a hoax dannys neuro recomended it yesterday to help with the long term azith hes on He has a virus right now I thought it was strept but test was negitive but who knows his face is broken out too poor kid still his behavior is a little better i hope this gets better and better I also cant say how greatful I am for this site and everyone that comments I cant even say how this helps me and my family

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sounds like a child who had candida infection induced tics. we have had members here whose kids stopped ticcing after they did candida elimination but those kids did not have TS. Remember sometimes kids who are ticcing for other reasons are misdiagnosed with TS

 

 

 

sorry but Nystatin is not a "cure" for TS.

 

if it was a "cure" we would have many "cured" TSers already as it has been widely used by many

 

nystatin is an antifungal drug and not a natural treatment btw

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Hello,

I read your reply and was curious how one would know to treat for candida? also what other things could cause the tics. Thanks for all your great information.

 

Deanna

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We did a candida cleanse diet in the beginning with our son. We never did use Nystatin. There is a doctor in Wisconsin (Bruce Semon) who has a special treatment protocol for patients with tics/tourettes that uses a special diet with nystatin. I contacted a few patients in his program (they have a forum) and received positive responses. I believe it works. We personally did not get a positive test for candida for our son as we did not test for it until 5 months into the diet change. Big mistake. I wish we had known about the necessary diagnostic tests at onset. We were just stumbling in the dark.

 

Cheri has great resources in the helpful threads sticky thread: http://www.latitudes.org/forums/index.php?showtopic=2459. She has listed the treatments that have helped her son and has shared with us some of the books on candida dieting she has used.

 

I have a family friend who did a master's thesis on treatments for Tics and Tourettes. She interviewed Dr. Semon extensively and was very impressed with his work. If you read Dr. Shaw from Great Plains Labs (also a speaker at the Tics/Tourettes Conference in May) he has a lot of very informative information about candida and its role in tic disorders.

 

Nystatin alone will not cure candida overgrowth. I agree with Cheri, that is a misstatement.

 

Candida grows when there is a lack of good bacteria in the gut. It feeds off of sugar and yeast and will multiply in the gut. Candida produces its own waste products and they are toxic to the body. It can also provide a positive environment for bad bacteria to flourish. Chronic illness and over use of antibiotics are known to lead to candida overgrowth.

 

Certain foods are helpful in reducing candida. The Specific Carbohydrate Diet is one way to combat candida but it is not the only way. The goal is to ingest foods that are easy to digest. Many take digestive enzymes with their meals while they are healing their leaky gut. Fermented foods, raw veggies, coconut, garlic, onion, natural sweetener honey (in moderation), dairy free, yeast free, low grain (or no grain depending on the diet). I may be missing a few things. This is the gist of it.

 

In our case we did no peanuts, no chocolate, no corn, no wheat, no soy, no dairy, no sugar (except honey), no gluten, and we used probiotics (we originally used Threelac) for about 5 months. Then we slowly began adding some foods. Two years later, we do use some sugar now and just about everything in moderation except the corn, wheat, and gluten. We use enzymes and we also use daily kefir and have been for about a year.

 

So to answer your question, no-- I don't think it is hokey. It is hard work though. I'm sure my son would tell you it is well worth it.

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So to answer your question, no-- I don't think it is hokey. It is hard work though. I'm sure my son would tell you it is well worth it.

 

I sure agree that the eradication of candida and other stuff that messes with the system plus adopting correct diet is worth it Caryn

 

I assumed Guy was referring to the nystatin as "cure" for TS as "hokey" rather than that physician and much of what is documented there.

 

I have absolute belief that getting to the root problems that trigger tics, which so often is infection/toxin, immune or allergen related, is most definitely worth the hard work!

My son would agree with yours. ^_^

 

He has the gene for TS and so who knows, he may have tics for the rest of his life, but that is ok with us and him, as they are no longer the tics that overshadowed all else in his life. an eye blink or a shoulder shrug or even an "UH!" etc are not things we even notice anymore after having lived through some of the scariest and disabling (socially and physically!) tics :( even on meds, in fact at worst on meds......

 

And we have a careful diet and correct supplementation to thank for the good place he has been in for years now......

(plus sooo much answered prayer and support :wub: )

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I assumed Guy was referring to the nystatin as "cure" for TS as "hokey" rather than that physician and much of what is documented there.

 

My apologies for not specifying. I was referring to the website as hokey. There was no structure or anything, just a bunch of random info clipped together without sources or verification. That's what I thought was hokey.

 

no peanuts, no chocolate, no corn, no wheat, no soy, no dairy, no sugar (except honey), no gluten

 

What does that leave? Can you describe a day's worth of sample meals (breakfast, lunch dinner)?

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My apologies for not specifying. I was referring to the website as hokey. There was no structure or anything, just a bunch of random info clipped together without sources or verification. That's what I thought was hokey.

 

this is the source

 

http://www.raysahelian.com/

he has a lot of info that is very interesting IMO and the TS page itself had some info, some links and some patient anecdotal reports. perhaps not a scientific paper, but interesting nonetheless and much on there is sure not "hokey" IMHO

 

after the recent scandal related to the phoney pharma/research stuff and Dr Scott Reuben, who now admits it was false results that he made up in research for Pfizer etc, along with other publishing fraud allegations........well........I dont always believe everything I read in published medical reports ...sometimes IMO there is often more of a clue to in many anecdotal reports that show a clear trend on something than a "peer reviewed published paper"

 

I used to work in medical research....I saw how some people got their results!

 

 

ok off my soap box :(

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no peanuts, no chocolate, no corn, no wheat, no soy, no dairy, no sugar (except honey), no gluten
What does that leave? Can you describe a day's worth of sample meals (breakfast, lunch dinner)?

 

Sure!

 

Breakfast:

 

Jones sausage links (can get them at Costco and local grocer in freezer section) They are made with rice filler-- something some even avoid.

Gluten free bread/muffins/scones-- I bake them myself. Many manufacturers now make various brands for those that don't bake. Enjoy Life carries many breakfast products including granola, snack bars, cookies, etc.....

Nature's Path rice crispy cereal with Trader Joe's rice milk (no vanilla flavoring to avoid corn)

Eggs-- boiled, fried in olive oil, scrambled.

Supplement smoothie-- we use frozen mango chunks from Trader Joes (TJs) and add fresh bananas, sometimes strawberries, sometimes blueberries, Simply Orange Orange Juice, our magnesium for the family, our Kefir (which is not dairy free, so in the old days we used Threelac instead), and blend on high. Then we drop in some eggs (raw) and blend on low. Kids love it. Eggs are good for cholesterol and recent studies have shown that ASD kids need it in their diets.

 

Lunch:

 

I get these freeze dried fruit snacks from Costco. Something 'all natural' in the name. Anyway, they are called crisps and come in pear, apple, banana and strawberry. Kids love them. I also buy from Costco the Fruit Leather snacks. Mrs. Mays also sells nut packs that are yummy but very sweet. We get them now but not originally.

 

Kids eat raw carrots, frozen blueberries (I have no idea why but they eat them like candy over here. The blue finger tips drive me crazy.) We make salads with a mini food processor and they make their own dressing with my shaker bottles. Little honey, little apple cider vinegar, some salt and pepper, spices, and olive oil. Then they shake and pour.

 

We buy all natural lunch meats. I think the brand we get is Hormel. It is at our local Jewel store and I have also seen it at Dominicks, so Safeway and Albertsons probably has it. It is in a brown box and is preservative free and gluten free. Tigger loves the salami.

 

I get organic beef from TJs and Costco. My hams come from Whole foods at Christmas and Easter. I get the natural chicken from T.J.s and also their ground turkey (no solution injections or natural flavors added). My turkey is perdue (gluten free).

 

We eat potatoes, potatoes, potatoes (Dr. Semon allows, SCD does not). What can I say, hubby is Irish!

 

Kids love peas, broccoli, beans, carrots, fried garlic and onions, asparagus, and my special gluten free cookie recipe.

 

They drink goat milk regularly and I have recently reintroduced cheese to Tigger (he is on enzymes and tested negative on IgG for milk way back when.) We just removed it for candida cleansing purposes.

 

Oh, and for ice cream we LOVE LOVE LOVE the coconut ice cream varieties at Whole Foods. Such a guilty pleasure. I actually prefer them to the real thing now. I get all natural freeze pops too from my Celiac store. Can't remember the brand.

 

 

Things I have learned to make:

yogurt (easy and fun)

rice pudding (we use coconut milk-- in cans at TJs for really cheap) Kids LOVE it.

Bread, pancakes, cookies, brownies, birthday cakes, etc.....

 

You all don't know me in my PTL (pre tic life), but if you did you would really enjoy the irony most of my friends see in me having a recipe blog. I was not, NOT, the little June Cleaver that I appear like today. We ate out about three times a week. McDonald's was a weekly stop. I bought my dinners at the deli and in the frozen dinner sections of the grocery store. I never EVER chopped a raw vegetable. I just bought the frozen mixed bags with the sauce and heated them up. Everything was made with a bought jar of sauce. That was it. I didn't even know that folks peeled garlic before they chopped it and used it. I never even knew what a turnip or a parsnip was, let alone how to use it. I couldn't even make scrambled eggs or mashed potatoes (hubby always did it). So if I could do all of the above ANYONE can.

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  • 2 weeks later...

We did Nystatin for a couple of years and did not see the results we expected. Then we switched Dan doctors and after medical testing he prescribed a heavy medication to kill yeast and then use Nystatin to follow up as an on going treatment to prevent the yeast infection from becoming full blown again. Meanwhile we are still working on healing the intestinal tract which may have been damaged from heavy metals such as mercury that was once in vaccines as a regular additive to increase shelf life of the vaccine.

Needless to say treating yeast and other treatments combined made a world of difference in our family case but every case may not have all the same pieces of the puzzles.

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We did Nystatin for a couple of years and did not see the results we expected. Then we switched Dan doctors and after medical testing he prescribed a heavy medication to kill yeast and then use Nystatin to follow up as an on going treatment to prevent the yeast infection from becoming full blown again. Meanwhile we are still working on healing the intestinal tract which may have been damaged from heavy metals such as mercury that was once in vaccines as a regular additive to increase shelf life of the vaccine.

Needless to say treating yeast and other treatments combined made a world of difference in our family case but every case may not have all the same pieces of the puzzles.

 

what did you switch to he takes nystatin

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We did Nystatin for a couple of years and did not see the results we expected. Then we switched Dan doctors and after medical testing he prescribed a heavy medication to kill yeast and then use Nystatin to follow up as an on going treatment to prevent the yeast infection from becoming full blown again. Meanwhile we are still working on healing the intestinal tract which may have been damaged from heavy metals such as mercury that was once in vaccines as a regular additive to increase shelf life of the vaccine.

Needless to say treating yeast and other treatments combined made a world of difference in our family case but every case may not have all the same pieces of the puzzles.

 

what did you switch to he takes nystatin

 

ketoconazole was used on two different treatment bouts with time off in between to kill enough yeast so the nystatin could then work. Probiotic is also used as well as other factors in the treatment plan. Every child could be different so I am not providing a model just an example.

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We did Nystatin for a couple of years and did not see the results we expected. Then we switched Dan doctors and after medical testing he prescribed a heavy medication to kill yeast and then use Nystatin to follow up as an on going treatment to prevent the yeast infection from becoming full blown again. Meanwhile we are still working on healing the intestinal tract which may have been damaged from heavy metals such as mercury that was once in vaccines as a regular additive to increase shelf life of the vaccine.

Needless to say treating yeast and other treatments combined made a world of difference in our family case but every case may not have all the same pieces of the puzzles.

 

what did you switch to he takes nystatin

 

ketoconazole was used on two different treatment bouts with time off in between to kill enough yeast so the nystatin could then work. Probiotic is also used as well as other factors in the treatment plan. Every child could be different so I am not providing a model just an example.

 

My husband has tina versicolor Its a skin fungus I wonder if it has anything to do with yeast Danny also has athletes food treated and gone but hummm

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Just curious if you bought a bread maker?? It seems I will need to do this to make my boys sandwhiches for lunch.

thx

abbe

 

I got one for free from my folks and used to use it but now I actually make double batches of dough all in one bowl with my kitchen aid mixer. I pour into two bread pans (sometimes up to four) and bake them all in the oven at one time together. I do this once a week. Takes 10 minutes to make the dough and about 50 minutes to bake. It is my pre-American Idol ritual on Tuesdays. I just 'get it done' for the week that night so that I'm not tied down on the weekends baking. I freeze the extra one and pull it out when the first one gets eaten (usually in about two-three days). GF bread is much heavier than regular bread so you eat less as a rule. It is filling. We do not use yeast in our house. Every once in a blue moon I will buy a packet and make bread with it and then suffer afterwards. I cannot tolerate yeast even after 2 years off of it. Before the diet I didn't know how to make much more than Christmas cookies and Bisquick recipes. I never baked bread from scratch.

It is really easy once you get into the swing of it. And now they make so many bread mixes that are GF all you have to do is add eggs, water, and stir.

 

My recipe list is here:

http://healthy-family.org/quick-links-to-g...rn-free-recipes

 

This is where I store all the recipes that 'pass the muster' around here. We do not eat sweets often. Many of those recipes are for special occasions. The carrot cake is the best. I plan to bake it for Easter. It tastes best with honey as the sweetener.

 

GF bread does not make great sandwich bread. Just think out of the box. Roll the lunch meat in lettuce, use rice cakes (Trader Joe's has nice ones) Suzy's makes really thin ones that make good PB and J sandwiches. (We use sunbutter instead of peanut butter for candida reasons. I think it tastes better anyway).

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