Very encouraging Results with these Supplements

[CarolynN]

Hello Everyone,

 

I wanted to share with you some information I am excited about. Some of you may remember, back in January, I posted regarding my theory as to what was truly going on with my son's tics. I believe it is a lack of something called sulfate ions in his liver. Here is the post I did about this for those that want a refresher or never read it http://www.latitudes.org/forums/index.php?...mp;hl=sulfation . Well I went to one of my Naturopathic Doctors, here in Arizona and who I am convinced is about one of the world's smartest doctor, and presented my theory to him.

 

I explained to him, that in my reading of the sulfate ion system, I came to understand that neurotransmitters (it is the dopamine neurotransmitter that directly impacts tics) can be directly affected by increased histamine. When your sulfate ion system is not working correctly it cannot process this histamine properly so hence it also is unable to processes out excessive neurotransmitters because of it. He said this is exactly correct. I then explained to him I understood that this same system of the body would help process out toxins in artificial food. He said that is correct too.

 

I went on to explain to him that I tested my high histamine theory out by giving my son Benadryl. I explained to him how it seemed to reduce his tics. He said to me, at this point, all this made sense to him.

 

As a side note, since I have read this on the forum, I asked him why a small percentage of people have an increase with tics with Benadryl (or any anti-histamine). He explained it is called a paradoxical effect. He said some people's bodies react negatively because their body sees the histamine being lowered with the medication basically as a threat (histamine protects the body). So their bodies up histamine production to replace the lost histamine. So in otherwords, their bodies get a surge histamine because the body is basically freaking out since the histamine was lowered with the medication. Since now you have a surge of histamine being produced, you then have neurotransmitters (dopamine) elevated and hence increased tics.

 

He went on to explain to me that when someone is high histamine they have a high PH balance in the body (high histamine = high PH balance). He said that one way to get histamine down, which in turn would help not overwhelm the sulfate ion system so much, is to reduce the PH balance of the body. He said the simplest way to do this is with Apple Cider Vinegar. This article, about the sulfation system of the body, basically comes to the same conclusion http://www.newtreatments.org/fromweb/sulfur.html (when I tried to pull it up when typing this post it gave me an error message so hopefully it is still accessible). I have started giving my son, Daniel, Apple Cider Vinegar 500 mg twice a day in capsules. You can also buy it just in plain old liquid form but I think it is pretty strong. I don't know how you could hide the flavor. Anyhow he has taken this for the past 3 1/2 weeks.

 

The other supplement, that I am truly excited about and completely believe is an answer to prayer, is called N-Acetyl-L-Cysteine. My doctors words to me was this "if you are right about his tics being a sulfation problem then this will be the ace in the hole". Well I have seen dramatic improvement in his tics in terms of his tolerance for being able to take in more artificial foods since being on it for 3 1/2 weeks.

 

Let me explain to you what I mean by dramatic. I have purposely held back sharing this information until I could have a really good sense that his improvement was not a fluke. We have been on spring break for the past 1 1/2 weeks. I thought this will be my time to test out how well this supplement is working. To remind everyone Daniel is very sensitive to artificial foods. Especially yellow #5 and #6, caramel color, Red #40, and high fructose corn syrup. His biggest "enemy" is MSG. Anyhow, I started letting him everyday have something with artificial ingredients , but have not given him an MSG food yet, since being on Spring Break. For example, he has had a blue "Icee", donuts from Entemanns, a snow cone, Sprite, cookies from the mall with green sprinkles, and brownies from a box mix (there were other items too but basically one or two items a day).

 

The long and short of it is he has had next to no tics. Normally, especially with all he has had the last 1 1/2 weeks, he would be at a fairly high level by now. I can compare this because I have been observing him for the past 18 months, since the tics really started to flare, and I have noticed over that time that it is always a buildup in his system. His body can tolerate some very minimal artificial foods but not much. The diet he has eaten, the last 1 1/2 weeks, is a considerable amount for him. I do have to say he was chewing on the inside of his cheek some and making it sore. But this was sort lived for about a day. I have seen a few eye rolls, maybe a total of 7, over the past 1 1/2 weeks. But again vast improvement over all. Every day I tell my husband what he has eaten and he cannot believe that he is not having an increase in tics.

 

So how is it that this N-acetyl-L-Cysteine works? It helps in the process of producing something called glutathione, which my doctor explained is directly related to the sulfation system (I had a hard time finding information on the Internet to share regarding a direct relationship to the sulafation system). But I did find this http://ezinearticles.com/?Nutritional-Info...e&id=388569 and also this http://www.vitamins-supplements.org/amino-acids/cysteine.php (we are not using the exact product advertised on this page but it was good information).

 

I am giving Daniel 1/4 teaspoon of the N-Acetyl-L-Cysteine twice a day (I am packing it in empty capsules I ordered from the Vitamin Shoppe). I purchased the supplement through my doctors own pharmacy. I am going to need to find out how many (mg's) this is exactly and I forgot to call today. I am sure some may be interested in trying to figure out the correct doseage amount for their own situation. So I will try to remember to call the office on Monday and will post my findings. Also, what is strange is the longer we have it the "gummier" it is getting. It looks like it go wet and is getting sticky. It smells very much like sulfur.

 

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I have added this in after the fact. Please click on here to get an update from me as to me realizing that the doctor had also mixed in Potassium Bicarbonate into the N-Acetyl L Cysteine and this combination seems to be what is really helping him http://www.latitudes.org/forums/index.php?showtopic=3497 . This would also explain why the mixture I received from the doctor's office was sticky because it was the mix of the two products together. I now have them seperated out so they will not get sticky.

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According to this article, it is just a quick blip in it, there is theories the N-Acetyl-L-Cysteine helps with OCD http://en.wikipedia.org/wiki/Acetylcysteine .

 

With all this said, I have to remind you these are by no means all the supplements Daniel is taking. He is also on the following. He is 7 1/2 years and old 53 pounds.

* Bonnie Grimaldi's TS-Plus (I cut him back to 6 a day because the enzymes should be helping his body process the vitamins more efficiently)

* additional Magnesium Taurate 250 mg a day

* Glycine 4600 mg a day (Amino acid to help neurotransmitters. My doctor said if the N-Acetyl-L-Cysteine worked we could stop giving Daniel the Glycine)

* additional 500 mg of vitamin C a day

*Omega 3 (Nordic Naturals Junior)

* Dr. Houstons No-Phenol enzyme (we are currently up to 3/4 of a capsule a day). This is to help process artifical food dyes and salicylates.

* Dr. Houstons AFP-Peptizyde (to help process proteins and carbs. It also helps improve "gut" health) (2 a day)

* Phosphatidylserine (this one my Naturopathic doctor really thinks is beneficial to the brain. He said he has seen tremendous results for all kinds of things with brain function. But it is not an overnight result it takes, I believe up to two months to build in the system. Also it is rather $$$$$. I read it also helps counteract the side effects of MSG to a point).

* pro-biotic called MindLinx (it also helps with processing gluten and getting the gut healthy).

*GABA for anxiety

 

We break up his vitamins both morning and night.

 

I also prepackage my vitamins in ziplocks. I can do this with everything except the pro-biotic, which needs refrigeration, and the Glycine and Gaba (they are both powder which I add into an all natural lemonade called Simply Lemonade). It has made life so much easier because I do not have to compile all these vitamins everyday. What I do is a put out 40 bowls or cups and just go through like a factory and put vitamins in each bowl and then package them up in a ziplock. I only have to really mess with them once every 20 days.

 

It is hard for me to quantify the exact impact that the two new supplements have had on Daniel because I think it is everything working together as a whole. But I can say, as I said earlier, he has had remarkable improvement in being able to tolerate artificial foods. Also, please remember I also started him on Dr. Houston's products, back in January, http://www.houstonni.com/ which help with the processing of his foods. So I AM SURE this has helped him a lot too.

 

Anyhow, I am excited because I believe these two new products, N-Acetyl-L-Cysteine and Apple Cider Vinegar, will greatly help Daniel. I do have some further questions for my doctor regarding the N-Acetyl-L-Cysteine. For example, I read it can effect copper and zinc levels. I also read that you should drink water to avoid something called cystine renal stones (kidney stones). But I don't know, until I talk to him what the likely hood is for these "side effects". Everything else I read it seems to be a very safe non-toxic product. Although, I do not know how someone would react if they had issues with sulfur products in general. This certainly has a sulfur property to it. IF YOU KNOW THAT YOU OR YOUR CHILD REACT NEGATIVELY TO SULFUR, I WOULD CERTAINLY RUN IT BY YOUR DOCTOR FIRST. Perhaps someone on the forum may know the answer to this.

 

One thing interesting about N-Acetyl-L-Cysteine is this is what they give patients when they overdose on Tylenol. And speaking of Tylenol, it is EXTREMELY hard on the sulfation system of the body. I read that Tylenol wipes out your sulfation system of its sulfate ions for a period of time. My doctor confirmed this for me. So people with tics should be aware of this because what happens is now with a wiped out sulfate ion system, again your body is now unable to process excess neurotransmitters, toxins, and histamine out of the body.

 

The other thing that is hard on the sulfation system is chlorine. I read, in the above mentioned article http://www.newtreatments.org/fromweb/sulfur.html again, unfortunately, was not coming up you should immediately do epsom salts baths after swimming to help with the sulfate ions that were destroyed from the chlorine. I have been doing the epsom salts homemade lotion I have posted about previously and it is real convenient. This is how in Karen DeFlice's book "Enzymes for Autism and other Neurological Conditions" it describes how to make them. On page 244 I quote "Cheap and easy. Heat some Epsom salts with a little water to dissolve them. I put about one teaspoon of water in three tablespoons of salts and microwave for a minute or so. Add more water if necessary. Then mix this into around four ounces of any lotion or cream you like. I have used suntan lotion, hand cream, cocoa butter, body lotion, aloe vera cream, whatever I find that is on sale or inexpensive without the chemicals I am trying to avoid."

 

I would be real curious if anyone is going to a Naturopathic doctor in the near future what their doctor thinks of N-Acetyl-L-Cysteine? So if someone is and is willing to ask I would love to hear a different perspective.

 

I also have been meaning to post, for some time, that I read drinking more water will help lower elevated neurotransmitter levels. So when your child is experiencing more tics you might want to try to get them to "flush" their system with some good old water. I am not saying it will get rid of them completely but it certainly will not hurt and perhaps you will see a reduction.

 

I am excited because I have prayed about this for Daniel. I truly believe God has given me some amazing answers and I pray it may all help others too.

 

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I just wanted to add an update because I thought it was real important. It was posted further down in this thread that if you are diabetic you should check with your doctor first before taking Acetyl-L-Cysteine because it could block insulin.

 

Also, it was posted by the same person that you should take 3 times the amount of vitamin C to help prevent Kidney stones from forming. I am not sure if this means 3 times the amount of the mg's of Acetyl-L-Cysteine or if it means what the current daily allowance would be. But the same poster, Caryn, had a great article that states all the wonderful benefits of Acetyl-L-Cysteine so I would take time to read it if you can.

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Have a blessed day,

 

Carolyn N.

[Nan]

Hi Carolyn,

 

Thank you so much for taking the time to write about how the 2 supplements Apple Cider Vinegar and NALC have helped your son. I do have a couple of questions for you...

 

How did you find out that your son was lacking sulphate ions ? Is there a test that wee can do to determine this ? I know the nutrigenomics test (Yasko) provides a lot of information about methylation etc, I am not sure about sulphation..

 

You mentioned that your son did not have an increase in tics ; were you also able to see more reduction with the addition of these 2 supplements ?

 

Thank you once again for your detailed post. This kind of knowledge and experience sharing that is so prevalent on these boards is what makes dealing with all these issues much easier .

 

Thanks,

Nan

[CSP]

Thanks Carolyn,

 

Now I'm even more curious to know more about you. You must post on nan's fun thread. I'm very happy for you, and praise the Lord for all His blessings on you and your family.

 

One question, would this help with a PANDAS child, or are those cases completely different?

 

C.P.

[faith]

Carolyn, you're so good. Thank you for sharing this and for providing such great explanations and reasoning. Even if it is not the exact issue for all, it is good to know this stuff and keep in mind how these things work and what could actually be happening inside the body...

 

Carolyn, I've been looking at these systems too and am following your findings--could I ask you a few things and see if you can tie this in or at least see if I'm getting my stuff right, maybe it is some of the same? I mean, sometimes different amino acids can accomplish the same things,... I think. I wonder if much of the different protocols we are all employing (or trying, anyway) are somehow helping in much of the same way. Maybe there is more than one way to get where you are going?

 

..I have been trying to understand how taurine fits into this.... we know it is one of the more important supplements for some as far as tics/ts, so I'm wondering if it doesn't do some of the same of what you are describing. Here are some short notes i have taken about taurine, maybe you can see the relationships? See if anything here makes sense or rings bells (to anyone).

 

(the thing you mentioned about glutathione, I can't find my notes right now, but somehow the below about b12 has something to do with ultimately converting into glutathione, so maybe there's something here). Sorry its a little confusing, just bits and pieces, but let's see.

 

- taurine is a sulfur amino acid, as is methionine, cystine and cystein. Taurine is synthisized from methionine and cysteine.

 

- taurine is formed primarily from cystein (B6 is necessary for this to take place)

 

- B12 (and folic acid as co-factors) uses homocystein to convert to methionine. (my son has the MTHFR gene mutation that makes it hard for him to convert B12, so we give methylcobalamine (which is supposed to be the next step in the process in order to bypass the problem), ... so I wonder if this problem that we are starting off with has anything to do with messing up his pathways, wether it be sulfation or what ever.

 

- important in the brain and nervous system.

 

- another important function is detoxification.

 

- msg can reduce taurine levels, as can glutamic acid.

 

- B12 uses homocysteine to convert to methionine (again, I'm pretty sure glutathione is somewhere in here too). I think Kim might know something of this, for we discussed in once here.) I'll link that thread, read especially post #4 by kim, it has some good info there. http://www.latitudes.org/forums/index.php?...58&hl=mthfr

 

 

Thanks

Faith

[CarolynN]

Hi Carolyn,

 

Thank you so much for taking the time to write about how the 2 supplements Apple Cider Vinegar and NALC have helped your son. I do have a couple of questions for you...

 

How did you find out that your son was lacking sulphate ions ? Is there a test that wee can do to determine this ? I know the nutrigenomics test (Yasko) provides a lot of information about methylation etc, I am not sure about sulphation..

 

You mentioned that your son did not have an increase in tics ; were you also able to see more reduction with the addition of these 2 supplements ?

 

Thank you once again for your detailed post. This kind of knowledge and experience sharing that is so prevalent on these boards is what makes dealing with all these issues much easier .

 

Thanks,

Nan

 

Hi Nan,

 

To answer you question regarding the sulfate ions and if there is a test, I don't know how it can be tested. The problem, from what I understand, is the system fluctuates greatly depending upon what is thrown at it. For example, if someone takes Tylenol it wipes the system out. So if you where to test right after taking Tylenol you would show very low levels. Also if you had a heavy load of artificial foods or chemicals coming at your body your system would be low. So, perhaps, there is a test but I never asked my doctor.

 

Honestly, it was by the Grace of God that I came to understand this and nothing less. It was in January when my son's tics where pretty high and I was starting to feel desperate. I prayed and asked God to please show me what is the underlying root cause of these sensitivities. I truly felt bad for him that he could not even eat a piece of birthday cake, at a friends party, and not have a reaction from the articial flavors and colors. I came across this post on Latitudes that really helped get the ball rolling http://www.latitudes.org/forums/index.php?...amp;mode=linear . I started following the chain of information and really came to believe this is what is going on with Daniel because the picture just really fit together. The things he is so sensitive too, artificial dyes, high fructose corn syrup, and MSG all have to be "detoxified" through this system of the body. I also understood, after reading this post that he was considered a high histamine type.

 

Regarding his tic reduction, this is hard to say, because since January I have not allowed him any artifical foods. So his tics have been minimal since the end of January. But, with what I have thrown at him the past few weeks, the other supplements he has been on would not have masked the tics to the point these products seem to. So my excitedness is that the tics basically never where able to get rooted in again once I started the introduction of these foods. Again this would not have been the case in the past. Also I really believe the enzymes are helping his system process foods better too so that is allowing his histamine levels to stay lower and helping his digestion overall. He has been on the enzymes since January. I have read it can take a few months for some people to start seeing the positive results of enzymes. Not everyone takes that long mind you.

 

Hope this somewhat answers your questions. It is all so complicated isn't it .

 

Carolyn N.

[CarolynN]

Thanks Carolyn,

 

Now I'm even more curious to know more about you. You must post on nan's fun thread. I'm very happy for you, and praise the Lord for all His blessings on you and your family.

 

One question, would this help with a PANDAS child, or are those cases completely different?

 

C.P.

 

C.P.

 

Absolutely, all the Praise does go to the Lord!! Sometimes it is so hard to understand why I or someone I love is going through a certain "crisis" in life. But everytime, I have always seen God's hand at work. In the long run, even though it is so uncomfortable to go through, it turns into a blessing and I have grown as a person and as a Christian.

 

I will check out Nan's fun thread. Thanks for letting me know about it. It will be fun to read .

 

Regarding the PANDA's Kim would be the person to ask about this. She posted this a while back and her understanding is sulfation is directly impacted by strep (read post #18) http://www.latitudes.org/forums/index.php?...=2844&st=15 .

 

Wouldn't that be exciting if this helped PANDA's out too!!!

 

Have a great weekend!

 

Carolyn

[lurker]

Carolyn,

 

I haven't had time yet to follow your links. I really want to study this before I start asking you questions. But one thing jumped off the page and screamed at me: "Tylenol cripples the sulphation (detox) pathway." Pediatricians routinely recommend that you give babies Tylenol BEFORE vaccinations! Many parents give it to them after too.

 

Also, I have an appointment with the naturopath next week.

[P_Mom]

Hi....great info., thanks for posting that. I have heard myself about Tylenol wiping out your system, I heard it is especially damaging to boys. I also know that Apple Cider Vinegar has been shown to almost be a "miracle supplement" for many various "diseases" My husband and I have been doing "shots" of it on and off for months, yes, it is extremely difficult to do. I didn't know you could get it in capsule form..thanks for the info. Also, another good way to get sulfites is through eggs...Easter is a great time for those eggs!!! Have A Happy Easter Everyone! He IS Risen!!!!

[CarolynN]

Faith,

 

You are exactly on the right on track. That is what amazed me so much when I starting reading all the information regarding this sulfation pathway. Especially from this article http://www.newtreatments.org/fromweb/sulfur.html . This system of the body needs the B vitamins and also the magesium taurate is a supplement that helps support/supplement it. When I started realizing these supplements are so critical to sulfation I was thinking about all the people on this forum who are using these products with success. So I can only imagine this has to be, at least some part for everyone, who is experiencing tics. We obviously all have livers and we all have a sulfation system so perhaps, people with tics in general, are dealing this system of the body not working up to par compared to others. I know if you read the article I referenced it focuses around autism. With autism they have found over 90% of these children have sulfation issues.

 

Carolyn

[CarolynN]

Lurker,

 

What insightfulness regarding the vaccinations. Isn't that amazing at the time the body needs to be working its best, to process the toxins of the vaccination, and here doctors tell parents to give Tylenol which cripples the body from doing its job to process out the toxins!

 

I have to share something very quickly. When Daniel was born we had him circumcised. He was only a day old. He wouldn't stop crying, after the circumcision, so I asked the doctor to give him, guess what, Tylenol. She said they really don't like giving this to babies until after 2 months old but she agreed. I am sure she agreed just to pacify me. Well at the same time he was given this Tylenol he was also dealing with jaundice. So here he had two major blows against his sulfation system in his first few days of life. I just have to wonder what would have happened if he never had been given that dose of Tylenol? Perhaps his sulfation system would be better if he had never been given the Tylenol. I obviously have know idea but it is interesting that Tylenol is so hard on the system and here he had it at such critical time of life.

 

Carolyn

[CarolynN]

Hi....great info., thanks for posting that. I have heard myself about Tylenol wiping out your system, I heard it is especially damaging to boys. I also know that Apple Cider Vinegar has been shown to almost be a "miracle supplement" for many various "diseases" My husband and I have been doing "shots" of it on and off for months, yes, it is extremely difficult to do. I didn't know you could get it in capsule form..thanks for the info. Also, another good way to get sulfites is through eggs...Easter is a great time for those eggs!!! Have A Happy Easter Everyone! He IS Risen!!!!

 

DKRESmith,

 

He has risen indeed!!!!!!!!

 

The Apple Cider Vinegar capsules I have been giving him are by "Natural Factors". I found it at Whole Foods. It was pretty cheap. I think around $8 for 180 capsules.

 

Have a great Easter weekend!

 

Carolyn

[Caryn]

That is very interesting documentation.

Had you also tested your son for allergies, environmental or food related? I have a friend in holistic therapy who taught me about ph levels long before I knew anything about our son's dx, etc... Her husband is 6 years after his liver transplant and he is off all anti rejection medications by simply eating a low acidic ph diet and taking certain supplements to help boost his new liver's function. He looks fantastic, better than he has his whole life. (low acidic is pretty darn close to vegetarian, I believe, and vegetarian with low starch I think). Anyway, she and her husband don't touch pork with a ten foot pole. They really focus on what they eat eats.

If anyone is interested on ph levels of food I found this site:

http://home.bluegrass.net/~jclark/alkaline_foods.htm

also, my friend told me that you could buy ph strips either online or at a health food store to do urine samples. We did that way back when and our ds was acidic. My friend said that is not unusual as most Americans are, based on diet. I should dig them out again, just to see. Now if only I can remember where I put them.

[ilovedogs]

Hey Carolyn,

Just wanted to let you know that I take NAC every time I take Tylenol. I use it to offset the effect the Tylenol has on my liver. I also take NAC if my gallbladder starts acting up b/c I ate too much fatty foods, etc.

Also, the apple cider vinegar: I've been taking that for heartburn and stomach acid problems. I take about 2 TBSP of vinegar, 2-3 TBSP of local honey, lots of water and ice: I drink this a few times through the day as needed. This is just another alternative way to take the apple cider vinegar. Also, make sure if you buy liquid that you buy the vinegar with the 'mother' in it. The good enzymes will still be there! I buy Bragg's brand.

Hey, was it Profrock that you were working with on this?

I still haven't made an appointment with him yet! We're dealing with the orthodontist issues these days!

[P_Mom]

Great reply Carolyn...I was wondering if someone was going to come back at me with that!!!!

[CarolynN]

Caryn,

 

The only allergy test I have done for him is something similar to NAET. This system called NEAT tests for literally thousands of allergies. It is done through my Naturopathic Doctor. After you are tested that day, you have a series of four visits, the doctor then does acupressure to help desensitize you to the allergies. It really is an amazing process.

 

Thank you for the information regarding the PH balance. It is all so intriguing to me!

 

Carolyn