Re: Fw: PANDAS symptoms, low amylose, low [2 Attachments]

[Guest guest]

Hi deb, can you email me off line and share your doctor info for Dr B, I am in

need of a new doctor badly...

also, anyone have any ideas what would cause severe urinary pain/urgency. my 12

year old son started about two months ago to have urinary pain, waking at night

and having pain, It is usually high oxylates but goes away with flushing of lots

of water and identifying any high oxylate food he might have had, but this didnt

help... it has gone on now for so long, progressing to severe urinary

urgency/frequency, he will pee regular, then a couple minutes later strain and

dribble, and this goes on all day and night. the pain seems better or he is just

use to it as usual, our poor kids... all docs have no clue and I am so stressed

trying to figure it out...

anyone else experience this? Ow, tried some diflucan, cause that has helped in

the past too, seemed to decrease pain a little but that is it. trying to get apt

with a urologist, major hastle, wont even go into that hell....

deborah

>

> Thanks for the good info Deb! We are starting low amylose diet per son's

LLMD

> after my son's b-day tomorrow. He just came back (as I imagine I will) w the

> " dreaded genotypes " for lyme and mold when we ran the Shoemaker labs

recently. 

> Now I need to do the ERMI to see how our house scores for mold.

>

> We tried taking out just high oxylates a few wks ago but couldnt find any milk

> we could drink (almond etc were out) and no more nut butters-- short list of

> veggies were left (everything he didnt like) it seemed. Guess we will do the

lab

> to see if he needs to do this too.

>

>  

> As far as sugars- Im assuming the 2 safe ones are still allowed (stevia and

> xylitol)- I forgot to ask the Dr about this. Cane juice is not allowed-

correct?

> I have to look up honey as well altho we rarely use it. His Dr said only corn

is

> allowed but I keep reading quinoa is ok so Im going ot go w that as he can

then

> still have his fav noodles which are org corn and quinoa.

>

> great to have support thru all this!

>

>

>

>

> ________________________________

>

> To: BorreliaMultipleInfectionsAndAutism

> Sent: Thu, April 5, 2012 11:04:28 PM

> Subject: Re: Fw: PANDAS symptoms, low

> amylose, low [2 Attachments]

>

>  

> [Attachment(s) from Deb included below]

>

>

> Don't know why the low oxylate diets did not go through the first time. 

>

>

>

>   Subject: PANDAS symptoms, low amylose, low

>

>

> To , Krassi and whoever is interested in low amylose, low oxylate diet. 

> Stopped my sons constant urge to urinate.

>

> I have attached the two diets that I got from Dr. B.  As you will see, you

can

> find the low oxylate online.  I did not ask them but it look VERY similar to

one

> you can easily get online. 

>

>

> I questioned Dr B on both of them because at first it looks ridiculously hard

to

> pull off and sometimes you just cannot do everything to the letter but you

will

> cutting way down on amylose and oxylates at least.  Do it slowly if you need

> to.  My son is a veteran at all this stuff and frankly his condition was so

> terrible I had to do things quickly.  I did not have time for doing things

one

> at a time.  I will include her answers below.

>

> I must tell you that I started the PEMF device by mid-Jan which helped sleep A

> LOT so that's another variable....but I am confident that the diet (especially

> low amylose) effected the frequent urination BC it did not stop till we did

that

> - (low amylose started Jan 18 and low oxylate started Feb 1. 

>

> Also, in the past 3 weeks I have started him on LIMU and ASEA and they both

> could be having a very positive effect on him, but again I did see the PANDAS

> symptoms go way down or stop before the introduction of LIMU and ASEA. 

>

> I've have now cut down on his meds and he does not need any pain meds anymore

> and I do attribute that to the pad, possibly ASEA and LIMU.  

> eats a lot of melons, mangos, peeled pears, peeled apples, avocado,

> peeled cucumber, peas, corn, cauliflower, lean organic meats, some boiled

eggs,

> organic corn chips, some pop corn.  I may put lentils back in.  Conflicting

> opinions about lentils. 

>

>

> On both diets:  Allowed grains:  Tapioca, quinoa, yucca root flour (we

don't

> even know if this exists), coconut, spelt (yeah right), corn flour.  Yeast is

> okay.  So you can have your bread made but we just do Ezekiel and not every

> day.  We make coconut pizza dough, coconut muffins and they are quite good. 

All

> meat, fruit and veggees are suppose to be organic but meat is the most

important

> and as long as the meat is no hormone, no antibiotic, it's okay.  Traces of

> canola and other oils on chips or whatever are okay.  Get use to cooking all

the

> time.  Sucks.

>

>

>

>

>

>

> -- Re: PANDAS symptoms, low

amylose,

> low oxylate diet, cholestyromine treatments

>

>

> Debbie,

> Thank you for your explanation about the low amylose diet, if you don't mind I

> would like to ask you few more questions. Where can I find a list of the low

> amylose foods, I searched in Internet but there are lots of conflicting

opinions

> indeed. Some say no fruits at all, others say most fruits are allowed, with

> exception of watermelon and dates, are there any others we should avoid (my

son

> loves fruits and eats them all day long, especially apples and bananas). Also

> all vegetables that grow under the ground are not allowed, right? Do you give

> rice - white and brown? We avoid quinoa because it is high in oxalates, but

you

> are saying you are giving it, what other high oxalates grains you have been

> giving without negative results? My son has been all organic gluten free/sugar

> free/soy free food for the past 3 years (very rarely exceptions), but this by

> itself has not made any difference with the frequent urination, the only

> difference we have seen is going on the low oxalates foods, but again - there

> are other triggers that we haven't found yet and that's why I am hoping the

low

> amylose diet may help.

> Thanks for your help,

> Krassi

>

[Guest guest]

My son is also having increased urination and he has been on the low oxalates

diet for 2 years, so I know it is not oxalates but something else that we are

still trying to figure out. Sometimes he urinates every 5 minutes or even less

and it is extremely difficult for us to travel or go anywhere - even therapies,

because of his constant urge to go. This has been going for few months and we

have visited numerous doctors and done so many tests, but still cannot find the

reason. First we thought that his ADH hormone is off (Dr. K thought so and

recommended to check it), however later we found out it is within the normal

range. Our homeopath thinks that it is caused by severe stress (my son had

severe thooth pain and went through tooth extraction, which indeed was extremely

stressful experience for all of us). The problem is that my son is non-verbal,

so it is lots of guessing, because we don't know how he feels. We have done of

course tests for UTI and diabetes, everything normal.

The interesting part however is that for first time I was giving him coloidal

silver for 2 days (he had finger infection, so we wanted to stop it) and finally

again he is able to hold it for 1-2 hours! Yesteday and today he hasn't wet

himself at all, which is huge! So I am wondering if he has some bacteria, that

the normal tests cannot detect and this is causing the frequent urination? I

stopped giving him the coloidal silver, because his finger is fine now, so

wondering if the frequent urination will come back. I will keep you posted if we

find anything else,

Krassi

> >

> > Thanks for the good info Deb! We are starting low amylose diet per son's

LLMD

> > after my son's b-day tomorrow. He just came back (as I imagine I will) w the

> > " dreaded genotypes " for lyme and mold when we ran the Shoemaker labs

recently. 

> > Now I need to do the ERMI to see how our house scores for mold.

> >

> > We tried taking out just high oxylates a few wks ago but couldnt find any

milk

> > we could drink (almond etc were out) and no more nut butters-- short list

of

> > veggies were left (everything he didnt like) it seemed. Guess we will do the

lab

> > to see if he needs to do this too.

> >

> >  

> > As far as sugars- Im assuming the 2 safe ones are still allowed (stevia and

> > xylitol)- I forgot to ask the Dr about this. Cane juice is not allowed-

correct?

> > I have to look up honey as well altho we rarely use it. His Dr said only

corn is

> > allowed but I keep reading quinoa is ok so Im going ot go w that as he can

then

> > still have his fav noodles which are org corn and quinoa.

> >

> > great to have support thru all this!

> >

> >

> >

> >

> > ________________________________

> > From: Deb <allstars_memteam@>

> > To: BorreliaMultipleInfectionsAndAutism

> > Sent: Thu, April 5, 2012 11:04:28 PM

> > Subject: Re: Fw: PANDAS symptoms, low

> > amylose, low [2 Attachments]

> >

> >  

> > [Attachment(s) from Deb included below]

> >

> >

> > Don't know why the low oxylate diets did not go through the first time. 

> >

> >

> >

> >   Subject: PANDAS symptoms, low amylose, low

> >

> >

> > To , Krassi and whoever is interested in low amylose, low oxylate

diet. 

> > Stopped my sons constant urge to urinate.

> >

> > I have attached the two diets that I got from Dr. B.  As you will see, you

can

> > find the low oxylate online.  I did not ask them but it look VERY similar

to one

> > you can easily get online. 

> >

> >

> > I questioned Dr B on both of them because at first it looks ridiculously

hard to

> > pull off and sometimes you just cannot do everything to the letter but you

will

> > cutting way down on amylose and oxylates at least.  Do it slowly if you

need

> > to.  My son is a veteran at all this stuff and frankly his condition was so

> > terrible I had to do things quickly.  I did not have time for doing things

one

> > at a time.  I will include her answers below.

> >

> > I must tell you that I started the PEMF device by mid-Jan which helped sleep

A

> > LOT so that's another variable....but I am confident that the diet

(especially

> > low amylose) effected the frequent urination BC it did not stop till we did

that

> > - (low amylose started Jan 18 and low oxylate started Feb 1. 

> >

> > Also, in the past 3 weeks I have started him on LIMU and ASEA and they both

> > could be having a very positive effect on him, but again I did see the

PANDAS

> > symptoms go way down or stop before the introduction of LIMU and ASEA. 

> >

> > I've have now cut down on his meds and he does not need any pain meds

anymore

> > and I do attribute that to the pad, possibly ASEA and LIMU.  

> > eats a lot of melons, mangos, peeled pears, peeled apples, avocado,

> > peeled cucumber, peas, corn, cauliflower, lean organic meats, some boiled

eggs,

> > organic corn chips, some pop corn.  I may put lentils back in. 

Conflicting

> > opinions about lentils. 

> >

> >

> > On both diets:  Allowed grains:  Tapioca, quinoa, yucca root flour (we

don't

> > even know if this exists), coconut, spelt (yeah right), corn flour.  Yeast

is

> > okay.  So you can have your bread made but we just do Ezekiel and not every

> > day.  We make coconut pizza dough, coconut muffins and they are quite

good.  All

> > meat, fruit and veggees are suppose to be organic but meat is the most

important

> > and as long as the meat is no hormone, no antibiotic, it's okay.  Traces of

> > canola and other oils on chips or whatever are okay.  Get use to cooking

all the

> > time.  Sucks.

> >

> >

> >

> >

> >

> >

> > -- Re: PANDAS symptoms, low

amylose,

> > low oxylate diet, cholestyromine treatments

> >

> >

> > Debbie,

> > Thank you for your explanation about the low amylose diet, if you don't mind

I

> > would like to ask you few more questions. Where can I find a list of the low

> > amylose foods, I searched in Internet but there are lots of conflicting

opinions

> > indeed. Some say no fruits at all, others say most fruits are allowed, with

> > exception of watermelon and dates, are there any others we should avoid (my

son

> > loves fruits and eats them all day long, especially apples and bananas).

Also

> > all vegetables that grow under the ground are not allowed, right? Do you

give

> > rice - white and brown? We avoid quinoa because it is high in oxalates, but

you

> > are saying you are giving it, what other high oxalates grains you have been

> > giving without negative results? My son has been all organic gluten

free/sugar

> > free/soy free food for the past 3 years (very rarely exceptions), but this

by

> > itself has not made any difference with the frequent urination, the only

> > difference we have seen is going on the low oxalates foods, but again -

there

> > are other triggers that we haven't found yet and that's why I am hoping the

low

> > amylose diet may help.

> > Thanks for your help,

> > Krassi

> >

>