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No tics with nystatin & diet


itsme

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We have been looking into Dr. Semon's 4 stage diet along with nystatin. there are many testimonials in his books (feast without yeast and the power to heal) ts patients who have NO tics after doing only strict candida diet and nystatin. Some have been tic free for weeks, others for years. I have spoken with the dr several times and a couple of his patients. Candida treatment does make sense to me as it seems to be the common theme among us with ts. The yeast does cause many of the symptoms that we and our children experience....allergies, compromised immune, tics, ect..... We have been doing the candida diet for about 8 months along with sups, probiotics with some pretty good success. However, dr Semon says that he has not seen very good success in patients who use mega doses of vitamins along with nystatin. He also says that beyond 2 weeks you should not use probiotrics as it feeds the yeast.

 

We are going to try his recommedations and cut out all sups and probiotics. We will take only nystatin and do the strict diet. The diet does allow potatoes which also seems a bit odd to me on the candida diet. But the success with his program is indisputable. If anyone knows anything more about this dr or his program i would be very interested to hear about it.

 

I will keep everyone posted on our results. We probably won't start for about a week or two.

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itsme,

I have a friend who is doing a dissertation on TS treatments and she told me about Dr. Semon and his protocol. Dr. Semon has a child with autism. We are currently completely tic free since just after Christmas and are following a system quite similar to what you described, only we are not doing nystatin (not because we don't want to, just because I haven't been to see my practitioner to inquire about a script.

We do eat potatoes, and have been gluten and corn free for almost 11 months. (Being corn free is practically a candida diet as you have to eliminate vinegars and pickles, etc....) I do allow for the odd sweet, but we are basically sugar free for the most part. We have eased off of the gluten free breads lately, and only allow natural juice (no store bought brands with citric acid and or sugar). We have also eliminated most dairy. We are no longer doing probiotic or vitamins. I read somewhere awhile back in a study that too high doses of B6 for too long develops a sensitivity to phenols. We personally saw that happen with our ds so I decided to step back on the vits before he was basically allergic to everything.

We are very happy with his health and his progress and are pretty much supplement free now.

Yes, I agree that candida is a major issue. We are using kefir (which I heard from someone on the SCD diet that it contains yeast). SCD dieters make their own homemade yogurts. We are doing fine with the kefir for now, but I may get adventurous with the yogurt in the future. At the moment I do not have a yogurt maker.

I highly recommend this route for anyone interested. We literally no longer have the many problems that are often mentioned here. Our ds is doing very well and most people we meet have no idea that he was dx'd with a chronic tic disorder last year. One doctor thought he was a 'classic' case and would eventually be dx'd with TS.

I want to mention too, that our son (age 3 3/4 at onset and now age 5), was dx'd gluten intolerant and allergic to wheat and corn through IgG testing last year.

We used to see:

facial grimacing,

insomnia,

rages,

excessive eyeblinking,

shoulder shrugs,

head nodding,

sleeve pushing,

sniffing,

throat clearing,

screen sensitivity,

and obsessive anxiety. (at his worst he would change his clothes six times a day after urinating because he felt he was 'dirty' if even a drop of pee landed in his knickers.)

change upset him and he often needed much coaxing to help him in social situations. Daily meltdowns were common.

 

For us the vits helped initially to take the edge off of the symptoms. We did the high vit doses for five months, but it wasn't until we were on the diet for quite some time before we could drop the vits altogether. Anyone interested in going this route must understand that there is no immediate 'cure'. For us it was VERY gradual. I think it depends on the severity of the case, too.

Caryn

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Hiya Caryn,

so glad all is still going well. Why exactly did you discontinue all supplements and how long has he been off? I'm also curious about the probiotics, is it not good for him?

 

Itsme, I don't understand what you said about probiotics feeding the yeast? I thought the whole point of probiotics is to keep the good bacteria around and crowd out the bad?

 

Also, Caryn, how long had your son had tics when he was diagnosed tic disorder?.......a five year old with NO meltdowns?!! :(:)

 

Faith

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I am so glad to hear that this is working for you both! Were your children ever diagnosed with TS, or was it just chronic tics?

 

I JUST Finished purchasing all of my supplements and am hitting the saylicalates first. (His head jerks are now back to eye tics, but that is better than the hard head jerks!!!)

 

Is the diet that you are mentioning anything like the Feingold Diet?

 

So many different options, so confusing where to start!!!!!!!!!!!!!!1 :(

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Faith,

We have been off all supps for two months now. We went off a few weeks before Christmas. As far as the probiotics, I was in contact with a woman whose child was treated through Dr. Semon and she (herself a biologist) said that she could not get the probiotic to function in the lab and questioned whether or not it would in the gut as it needed to. She suggested I use live cultures like what you'd find in Kefir or homemade yogurt. She told me that her child was symptom free for three years after the candida cleanse with nystatin and that her child had only one flare up due to a course of antibiotics. They promptly returned to the regime and the tics subsided and never returned again (so far).

Tracey--

Do use the supplements. That is a great place to start and will give you relief in the immediate time frame. In our case even when we went gluten free we did not get an immediate relief of symptoms. Gluten can take months to get out of the system. If you are a middle aged adult it could be over a year from what I've been told. While you are doing the supplements take some time to evaluate your options and to consider your particular situation. Keep a food diary and stay away from candida friendly foods. Stick to the basics. Yes we do a 'feingold' diet. It is really 'feingold plus' IMHO. We do not use their product listing because quite frankly, we cannot have most of what is on that listing anyway as our diet is much more restricting. The Feingold diet does not restrict wheat, gluten, corn, casein, egg, soy, etc.... It only eliminates artificial stuff and salicylates. But we did not start with this extreme treatment protocol. We arrived here as a 'last stop' on the train ride so to speak. Take the train ride. You may be able to get off much earlier than we did. If not, then when you get to the last stop you will know exactly what needs to be done for the cure.

 

FWIW--

We are not doing a strict SCD diet. I do not allow dairy unless it is in the Kefir or yogurt, so in that sense we are not strictly GFCF-- (gluten free and casein free) either. Occasionally I will let him have a minute amount of cheese. I still allow the odd sweet treat (but not daily). Our regular diet is completely sugar free. We do allow maple syrup (a no-no on the SCD diet) and honey (which is used on the SCD diet). On a very rare occasion I will allow cane sugar but it is never refined sugar, always organic and minimally processed (like evaporated cane juice). It took a long time, but I somehow figured out what works for Tigger and our family and have stuck to it religiously.

 

Faith,

Tigger is five, after all-- He does not have explosive meltdowns but he still has more anxiety that his brother Chuckles or many of his peers. Part of this may be the fact that he is a little advanced for his age and tends to worry about things that he shouldn't (like the astronauts dying in space). He also has a very intense level of concentration and a very big vocabulary so he understands adult conversations both among adults around him and on TV. This causes stress too. He also has social stress. For instance, we went to a mother son dance with his brother and his brother had a great time from the start but he was very anxious and unhappy the first half-hour we were there. By the end of the night he was having the time of his life). I try to separate what is normal five year old stuff and what is over the top and in need of medication. I think for a while there I would blame the condition for the behavior and instead of sit down with him and talk about how he should have handled himself better. I would discuss how I needed to up this dose or alter that one. I think subconsciously I was sending him the message that it was okay to behave that way because there was 'something wrong with him and he couldn't help it.' Tigger still gets mad but I think it is in the realm of a normal five year old who has pesky 3 yr old and 1 1/2 yr old brothers that like to destroy his lego creations, take his cars, and break his crayons.

So for right now we are supplement free and tic free. Things may change as time moves on. I will keep you updated.

Caryn

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Hi Faith,

 

I don't understand the chemistry behind the probiotic elimination. It is something that dr Semon recommends so i am going to try it for a few months. I now have another positive testimony with Caryn - thanks for all of that Caryn, gives me even more motivation!!

 

I will post and let everyone know how it is going for me. I'm going to MN for a week so I won't be posting till next week.

 

There are going to be banquets and buffets and delicious food everywhere..... this is going to be trying!!

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I know that the Kefir has live cultures. Does anybody know if the Danactive is just as good. I bought the Danactive last week because I couldn't find the Kefir. I just found the Kefir, should I swich to that instead. In reading the Danactive label, it doesn't say anything about live cultures....???? Thanks.

 

Bcase

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bcase,

 

I remember not wanting to do the danactive I think because it was high in sugar, making it taste good. If you decide to switch I'd do it soon so she doesn't have a hard time switching because she like the taste of the danactive better. You might want to check the other ingredients too. The kefir I get is by Lifeway, it lists 10 active cultures, and only has milk, inulin (to boost calcium absorption) vit A and vit D3 as the ingredients.

 

Again, I get my son the plain. I don't do the flavors, and for a treat I'll blend it with raspberries, or blueberries, fresh or organic frozen. He really likes it.

 

C.P.

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i hope this works for you, itsme

 

my son had the candida overgrowth eradication with diet and caprylate, followed by maintenance with Candida Clear..... and although it certainly helped his overall health and was a contributary factor, I believe, in his overall improvement with the diet and supps, it did not result in NO tics. Nothing has ever done that...and we have been down almost all the paths searching for that miracle!

The genetically inherited TS that he and my husband have is, I firmly believe, triggered into manifestation by multiple factors. Every time something triggering is removed , the overall stress on the system is lowered and improvement follows. But they both still tic, albeit far less and with less severity than before. My husband is 61 and my son is now 18

 

 

 

re probiotics, we also use kefir by Lifeway as well as yoghurt from Stoneyfield farms. I buy them plain only nd then our family adds their own fruit, cereal, honey, etc to taste

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Thanks Chemar for the clarity you provide with your post. I do not want anyone to get the misconception that this is a cure all. No, Faith, we are not using the Threelac at the moment. I was also advised (Like C.P.) to try Kefir instead. So far so good. C.P.-- I do the exact same thing as you with it. I will also mix it with all natural not from concentrate orange juice. It is funny, but now that my Tigger is used to sugar free eating he does not notice that it isn't sweet.

I think the most important thing I have learned along the way is to get rid of the sugar and starchy foods that do not provide good nutritious value and replace them with fresh or frozen fruits and veggies. We have slowly moved toward a more specific carbohydrate diet but we never quite went all the way with it. We were lucky that our son's corn allergy led us down this path inadvertently.

I firmly believe that the candida cleanse diet is a lifestyle that has to be maintained. I bet that if we went off the plantation so to speak we would see a return of symptoms in maybe a month, maybe six months, maybe a year. I have talked to a few others that have said that they strayed from the diet only to return after symptoms resurfaced.

So for now we are doing great and have seen complete remission of symptoms.... But Valentine's Day is coming, and it is followed by Easter..... We may see some light ticcing again when we allow for a few treats.

I will keep you all updated.

-- As for the pyroluria dx, I have read a bunch of Dr. McGinnis's work about the gut connection and oxidative stress. We are doing a trial of no supps (although I have to clarify that he still gets fish oil and a regular multi just like any other kid.)

Caryn

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What do you use for probiotics if your child can't have milk or casien? Does the whole family follow the same diet? I guess that would make it easier! What exactly is Nystain? An antibiotic? Can I just use a probiotic to help if there's yeast overgrowh? Sorry about all the questions. About to get heavy metals testing, followed by candida testing. How did you know your children had yeast overgrowth? My son got a blood test that said he had no overgrowth. Thanks for answering all my questions.

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Lenny,

 

You can make your own kefir from goats milk, soy milk, ect... From what I have read it is easy to make. I still have the kefir grains in a bag by my bed. I have not tried to make it yet. I'm being stupid, I should just jump in and give my raw milk a try.

 

C.P.

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I think the most important thing I have learned along the way is to get rid of the sugar and starchy foods that do not provide good nutritious value and replace them with fresh or frozen fruits and veggies. We have slowly moved toward a more specific carbohydrate diet but we never quite went all the way with it. We were lucky that our son's corn allergy led us down this path inadvertently.

I firmly believe that the candida cleanse diet is a lifestyle that has to be maintained. I bet that if we went off the plantation so to speak we would see a return of symptoms in maybe a month, maybe six months, maybe a year. I have talked to a few others that have said that they strayed from the diet only to return after symptoms resurfaced.

 

Caryn

 

I agree with that concept Caryn! We aply it not only to aim to prevent candida overgrowth but also re the artificial/chemical etc additives and other dietary things that throw my son's system out of whack so easily

 

 

My son, and as a result all of us, have so benefitted from a whole new way of healthy eating and although in our case, we dont follow rigid diets in terms of allergy related, we do keep sugars and starches to the minimum and eat whole and pure and organic wherever possible. We have learned so many good substiutes for favorite foods and havent had to sacrifice taste and enjoyment.

 

I know this has also helped my son enormously with the Crohn's symptoms

 

Candida was actually the very first thing the team of Integrative Physicians had us work on way back when

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