RE: Re: Fw: PANDAS symptoms, low amylose, low

[Guest guest]



My son use to have VERY frequent urination... he tried to go every 5 minutes. Dr B sees this all the time. She is in CA, I can get you her info if you like. I don't think she would care at all if I used her name but just don't know the rules here. She started matthew immediately on low amylose, that's no sugar, meaning no potatoes, no rice, etc....I think that may have helped but we quickly went to low oxylates when the oxylates came in very high on Great plains testing. Got pro-biotics up raising slowly and had already started PEMF device. ALSO, Cholestyramine was huge, brought many benefits, physically and psychologically. I think all these things helped and maybe Limu as well. I do oreganol and that's great for bacteria and fungus so takes care of possibility of infection making it worse. Id be happy to help anyone that pm's me. has NO PROBLEMS with frequent urination anymore and no pain. Deborah I'm e mailing you now.

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]



Deborah,

dgfindley@... is not working for me. I don't know why. Please e mail me and i'll reply with dr b's info if you still need it, debbie

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]

The gums in your mouth are well known for holding onto strep bacteria. If your son had a tooth extraction most likely this released strep and strep is known to cause frequent urination/ PANDAS. I would certainly try to get your on on an antibiotic like azithro to treat this bacteria. You can try naturals like colidal silver but for many of our kids we have had to go with a strong antibiotic like azithro or augmentin. To: BorreliaMultipleInfectionsAndAutism Sent: Tuesday, July 10, 2012 2:36 PM Subject: Re: Fw: PANDAS symptoms, low amylose, low

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.Â

> > 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.

> >

> > Â

> > 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: mailto:BorreliaMultipleInfectionsAndAutism%40yahoogroups.com

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

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

> > amylose, low [2 Attachments]

> >

> > Â

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

> >

> >

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

> >

> >

> >

> > Â Â Subject: PANDAS symptoms, low amylose, low

> >

> >

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

> > 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.Â

> >

> >

> > 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.Â

> >

> > 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.Â

> >

> > 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. Â

> > 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.Â

> >

> >

> > On both diets:Â Allowed grains:Â Â 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]

Ureaplasma is a bacteria similar to mycoplasma, which is difficult to identify in standard tests.  It has been connected with interstitial cystitis in some people, the most common symptoms are painful bladder and frequent urination.  I have heard of some people treating ureaplasma with colloidal silver and doing better with that than prescription antibiotics that were supposed to treat it.  I have not read any research supporting the use of silver, or even implicating ureaplasma with any bladder infection or interstitial cystitis.  It may be out there, I just haven’t looked.  I have seen lab reports showing either antibodies to  ureaplasma or finding the organism itself, and the person had been diagnosed with interstitial cystitis.  This type of cystitis has not known cause, and no standard treatment.  Most conventional docs will just give pain relievers to reduce the pain and hopefully, the frequency of urination.  Your son’s response to colloidal silver suggests an infectious cause, even if the multiple urine tests have not identified the organism. Anne Mears, RN, MSN/IHmcfighter@... From: BorreliaMultipleInfectionsAndAutism [mailto:BorreliaMultipleInfectionsAndAutism ] On Behalf Of KrassiSent: Tuesday, July 10, 2012 11:36 AMTo: BorreliaMultipleInfectionsAndAutism Subject: Re: Fw: PANDAS symptoms, low amylose, low 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> >>

[Guest guest]

there are other naturals I would look into before using silver. OLE is great with strep lines and commonly used with those with PANDAS

From: Fund

Sent: Tuesday, July 10, 2012 2:42 PM

To: BorreliaMultipleInfectionsAndAutism

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

The gums in your mouth are well known for holding onto strep bacteria. If your son had a tooth extraction most likely this released strep and strep is known to cause frequent urination/ PANDAS. I would certainly try to get your on on an antibiotic like azithro to treat this bacteria. You can try naturals like colidal silver but for many of our kids we have had to go with a strong antibiotic like azithro or augmentin.

To: BorreliaMultipleInfectionsAndAutism Sent: Tuesday, July 10, 2012 2:36 PMSubject: Re: Fw: PANDAS symptoms, low amylose, low

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: mailto:BorreliaMultipleInfectionsAndAutism%40yahoogroups.com> > 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> >>

No virus found in this message.Checked by AVG - www.avg.comVersion: 2012.0.1913 / Virus Database: 2437/5134 - Release Date: 07/15/12

[Guest guest]

diabieties can show this way to

From: Ruth Setlak

Sent: Monday, July 09, 2012 4:54 PM

To: BorreliaMultipleInfectionsAndAutism

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

I know pandas kids have increased urinary frequency. But, I don't know if you are seeing any other pandas symptoms. I always mention things though, on the off chance that it may provide an answer.

RuthSent from my iPhone

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>

No virus found in this message.Checked by AVG - www.avg.comVersion: 2012.0.1913 / Virus Database: 2437/5134 - Release Date: 07/15/12

[Guest guest]

sounds like a urinary tract infection to me

From: dgfindley@...

Sent: Monday, July 09, 2012 2:39 PM

To: BorreliaMultipleInfectionsAndAutism

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

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>

No virus found in this message.Checked by AVG - www.avg.comVersion: 2012.0.1913 / Virus Database: 2437/5134 - Release Date: 07/15/12