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These supplements are helping us


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I have been waiting to post this for a bit, to make sure it lasts, but I have seen such an amazing improvement in DS9 in the last two weeks that I wanted to post. I have not seen him with this few symptoms in years. His anxiety is way down (still a little, but 10% of what it has been), compulsions are almost nonexistent (may be gone), and his tics are down to a few a day (at their highest they have been 10 a minute. We have seen tic decreases before, though). He is also much more cooperative and focussed.

 

He was on 3 weeks of azith in December, but Jan and early Feb were very high symptoms. Since then, and when I started to see the improvement, is when I put him on a couple of the supplements that I have read about here and there (including Dr. Burrascano's 2008 paper), and with the okay of his doctor. Currently he is on green tea extracts (supposed to be a very potent anti inflammatory), turmeric extract (the same, and also an antibacterial?), and methyl b12 sublingual. And an okay chewy multi vitamin (no minerals, just basic vitamins).

 

The other thing we have done is put him on a listening program for auditory processing issues for the past two months, and that has also helped enormously. He says that some of his compulsion triggers are particular sounds, so some credit may be due there, as well, for making it easier to process auditory stimuli without it triggering a reaction. (I have been so impressed by how this has helped him that I have been recommending it to several of my friends whose kids seem to have similar auditory issues. The one we are using is called The Listening Program.)

 

I hope I'm not jinxing anything by posting, but I have been amazed and wanted to share this. If anyone knows anything bad about these supplements, please let me know. Otherwise, I encourage others to try them. It has been a long 3 years for DS9, and this is the most optimistic I have ever been. He definitely has lyme -- tested positive on the urine antigen capture test (DOT BLOT).

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You know, I have been taking green tea extract myself, on the off chance that the hype about weight loss was true :), and I have noticed a fairly good reduction in arthritis pain. Never occurred to me that it was from that! Maybe DS should give it a try!

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The other thing we have done is put him on a listening program for auditory processing issues for the past two months, and that has also helped enormously. He says that some of his compulsion triggers are particular sounds, so some credit may be due there, as well, for making it easier to process auditory stimuli without it triggering a reaction. (I have been so impressed by how this has helped him that I have been recommending it to several of my friends whose kids seem to have similar auditory issues. The one we are using is called The Listening Program.)

 

 

lfran -- i'm glad to hear you are seeing such good results. hope it continues. can you elaborate on the auditory program? did a professional recommend it specifically for your son? did you just think it may be something helpful? what were symptoms before/after that you think it addresses?

 

thanks!

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The auditory program was recommended by an OT. I had noticed my son saying "what" an awful lot, and he seemed hypersensitive to some noises, but his hearing tests were normal. We took him in for an auditory processing evaluation, which is different from a hearing test, and they said he had a large discrepancy between his two ears in his ability to process language, which made him a candidate for the program.

 

The program is very simple. He uses special headphones (about $60) to listen to 30 minutes of music 5 nights a week. There are 10 CDs in the program (you go 1-10) and then you go backwards 10-1. It is all specially chosen classical music, with nature sounds (high pitched bird calls, etc). I would NEVER have believed that something so simple would make such a difference, but I truly think it did.

 

He hardly every says "what?" anymore -- and he was doing it constantly. He is no longer bothered by specific sounds that trigger tics/compulsions. His teacher says he is enormously more focussed in class and that whereas in the past she needed to go right up to him to get his attention, now she can call across the room and he hears and attends to her (it is an open, projects-based clasroom, with kids working on projects anywhere in the room). He was always a well-motivated child -- I think he just didn't have the tools to properly

attend to his surroundings, and this has helped.

 

When I told the OT what the teacher had said, she says she hears that from parents all the time, and that the teachers ask "what new med did you put your child on, that he is so much more focussed?" (I am part of a large HMO and I estimate that they have about a hundred people on this program at any one time, at just the clinic that I go to, based on the size of their lending program. We had to wait two months for our turn to come up to start it).

 

My HMO offered it for free as a library exchange-type of thing, exchanging each disk for another one week by week. It is also available for sale, but I think you need an OT's referral.

 

The other thing we have done is put him on a listening program for auditory processing issues for the past two months, and that has also helped enormously. He says that some of his compulsion triggers are particular sounds, so some credit may be due there, as well, for making it easier to process auditory stimuli without it triggering a reaction. (I have been so impressed by how this has helped him that I have been recommending it to several of my friends whose kids seem to have similar auditory issues. The one we are using is called The Listening Program.)

 

 

lfran -- i'm glad to hear you are seeing such good results. hope it continues. can you elaborate on the auditory program? did a professional recommend it specifically for your son? did you just think it may be something helpful? what were symptoms before/after that you think it addresses?

 

thanks!

Edited by lfran
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WOW! So glad you are seeing such great results!!!

 

The only thing I know about tea is that it can have high levels of lead and fluoride, depending on where it is grown. I have read that this is true even with organic, unfortunately. Maybe there are brands that test for toxins? That would be my only concern, and if it's a concentrate, that means you are receiving even higher levels, of course.

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Sure -- although, uncharacteristically for me, I didn't do tons of research first. I just went to the health food store and made a choice.

 

This is what I chose:

 

Jarrow Formula decaffinated green tea extract, 500 mg capsules.

Paradise Essential Turmeric 16:1 concentrated potency, 250 mg capsule

Source Naturals 1000 mcg methylb12 sublingual

 

Our doctor said it was okay to give him the adult dosage (he's almost 90 pounds), so I give 1 or 2 of each of them each day (split am and pm).

 

If you try them, let me know if they help. The first two are supposed to be strong anti inflammatories.

 

 

 

 

Ifran- I am so glad you are seeing positive results. Could you elaborate more on the three supplements you are giving...brand/dosage? Thank you!

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And one more thing -- I was reading an odd book about healing Lyme naturally and most of it didn't resonate with me, but they said that coconut milk had a lot of a particular substance (forget the name, sorry) that was very helpful against Lyme. Not sure how much I believe it, but hey -- I can buy it at the grocery store -- so I've been making smoothies and milkshakes with that. But that is just the last two days -- way after we've seen the improvements I posted about. I just thought that maybe the coconut milk can help us get at that last 5% or so.

 

(I also have a standing appointment to start DS on abx if his symptoms flare again -- I'm definitely planning to go that route when needed).

 

 

Sure -- although, uncharacteristically for me, I didn't do tons of research first. I just went to the health food store and made a choice.

 

This is what I chose:

 

Jarrow Formula decaffinated green tea extract, 500 mg capsules.

Paradise Essential Turmeric 16:1 concentrated potency, 250 mg capsule

Source Naturals 1000 mcg methylb12 sublingual

 

Our doctor said it was okay to give him the adult dosage (he's almost 90 pounds), so I give 1 or 2 of each of them each day (split am and pm).

 

If you try them, let me know if they help. The first two are supposed to be strong anti inflammatories.

 

 

 

 

Ifran- I am so glad you are seeing positive results. Could you elaborate more on the three supplements you are giving...brand/dosage? Thank you!

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Yes, we do a lot of coconut- it's supposed to be anti-parasitic and it has great fat too. We use the Jarrow brand for other things and it seems pretty "pure" as in it doesn't have a ton of nasty additives.

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Coconut milk is dairy free. If you buy it in the can, it has less additives than buying it in the carton. Look for a green can called "Native Forest" brand, which has a BPA-free can lining and is organic.

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Coconut milk is dairy free. If you buy it in the can, it has less additives than buying it in the carton. Look for a green can called "Native Forest" brand, which has a BPA-free can lining and is organic.

 

You are an answer to a prayer! I was at the store buying some canned coconut milk today & wishing I could find a brand that was BPA free - I know I've seen that brand somewhere before - does Whole Foods carry it? Might've been over at Amazon.com...

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Whole Foods also has fresh Coconut milk that has no additives.

 

Coconut milk is dairy free. If you buy it in the can, it has less additives than buying it in the carton. Look for a green can called "Native Forest" brand, which has a BPA-free can lining and is organic.

Thank you.

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Whole Foods carries it, a lot of health food stores do, and Woodman's stores in IL carry it. AND you can buy it on Amazon w/free super saver shipping: http://www.amazon.com/s/ref=nb_sb_ss_i_0_26?url=search-alias%3Daps&field-keywords=native+forest+coconut+milk&sprefix=native+forest+coconut+milk

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