RE: At a loss on urinary symtpoms -

January 11, 2008

,

Thanks for all the details!

I have a copy of your son's 12/3/03 GPL Oat but I don't have entered

anything past that. Back then, it was about 110. Can you write me offlist

and maybe send me the others? There are some calculations I do that can

only be done with the entire report. There is no telling what I might be

able to notice!

There does not appear to be a good reason to go very far over the RDA for

calcium for this before-meal calcium intake.

This is a site that tells us more about normal requirements for calcium in

children:

http://www.drhull.com/EncyMaster/C/calcium.html

It says:

Most bone mass accumulates during childhood and adolescence. About 90% of

an adult's ultimate bone mass is accumulated by the end of the adolescent

growth spurt around age 17. Increasing bone mass deposition during the

first two decades of life reduces the risk of later bone fractures.

According to government research, more than one-half of all children, and

more than 85% of girls age 12-19, do not meet the 1989 Recommended Dietary

Allowance (RDA) for calcium. Teen girls in the United States average only

about 740 mg of calcium per day, well below the amount needed for normal

growth and development.

Calcium requirements for children 4 through 8 years are 800 mg per day;

children and adolescents aged 9 through 18 years need 1300 mg per day.

So, if your were to split this in four or five doses, you can see how much

you might want to give each time.

The amount of arginine people are using varies quite a bit. I believe the

capsules are generally 500 mgs, and some are giving that much several times

a day, but I certainly wouldn't start there. I would go low and slow and

watch particularly for any exacerbation of herpetic infections because

arginine can aggravate those and lysine minimizes them. Most low oxalate

foods tend to be low in arginine and high in lysine, by coincidence, so I

haven't really heard complaints from listmates of cold sores increasing or

anything like that. I did notice in myself, that after going LOD (and now

probably MOD) that I no longer have the mouth ulcers that have plagued me

most of my life. Nice perk!

On the baking soda, before I would get very deeply into that, I would find

some litmus paper and measure urinary and salivary pH. Some of our

listmates find that when dumping the pH can bounce all over the place in

the same day. There are diurnal variations anyway, but these are more

extreme. So far, most doing the baths find the bicarbonate to be a plus,

not a negative, but we really need to sort our that difference and

understand what it means.

Oh, also citrates can help to minimize crystallization of oxalate which

might help with the urinary pain. Probably the best thing for that is

magnesium citrate.

At 11:45 PM 1/11/2008, you wrote:

>,

>

>Thank you for the thorough reply. What scares me the most is that I think I

>understand what you are saying. Since we are seeing heavy symptoms now, I

>plan to get an OAT Monday to check oxalic acid/yeast/bacteria and I am also

>going to try and get samples sent in to rule out UTI, kidney infection, and

>bladder infection. He does not have any fever at all so it is probably

>oxalate dumping as you suggest, but I would like to rule the infections out

>especially since they are simple urine samples. As a side note, last year

>when we saw these symptoms, his UTI result was negative.

>

>Just to recap, we started the LOD last May after very heavy symptoms and

>oxalic acid at 107 (range 0-37) and the next OAT we took in Oct showed

>oxalic acid down to 36 (just in range). So, the LOD worked to get the

>numbers down and more importantly the symptoms resolved although he would

>still grab his groin every once in a while. So, now we are 8 months into the

>LOD and seeing symptoms spike again. If it is a dump, we should see that on

>the OAT. One thing is for sure, unlike most other types of symptoms we have

>seen with asd which can be vague, these symptoms are immediately noticeable

>as they are unique and powerful. We definitely see it at home and the

>teachers definitely report it at school.

>

>I definitely think our son is in the category of a kidney excreter. This is

>the focus of his symptoms every time. As far as your recommendations to get

>thru the dump, we have been giving calcium, arginine, and magnesium but we

>should pay more attention to the timing of it. However, we are not able to

>give him the VSL3. It does have trace casein in it and the two times we

>tried it, our son reacted to it. You may remember that he is very sensitive

>to even trace casein. We do give other probiotics with similar strains

>though.

>

>Would you mind telling me how much calcium and arginine are being given and

>also what are your thoughts on giving baking soda orally?

>

>Ironically, when we put baking soda in his bath, we seem to get more (not

>less) irritation. Does that mean the baking soda could be helping to release

>the oxalates or is something else going on?

>

> L

>

>From:

><mailto:csb-autism-rx%40yahoogroups.com>csb-autism-rx

>[mailto:csb-autism-rx ]

>On Behalf Of Owens

>Sent: Friday, January 11, 2008 1:18 AMSubject: Re: At a loss

>on urinary symtpoms

>

>,

>

>It sounds to me that your son is " dumping " . After reducing oxalates, the

>body is able to equilibrate, which means in tissues where oxalate was

>stashed away in the past, there is a release of stored oxalate into the

>blood from where it needs to find a route of escape from the body. The

>kidney is one likely place to find this increase in oxalate

>secretion. That means today, you can have low oxalate in urine, and then

>tomorrow, when the body starts " dumping " , the levels in urine may be sky

>high from oxalates that have been released internally. These oxalates are

>NOT coming from the diet.

>

>I wished when I started our Autism Oxalate Project that some doctors who

>had been treating patients with primary hyperoxaluria (when the source of

>the oxalate was the liver that get's transplanted) had studied this dumping

>process in detail, but what we can learn from that literature is sketchy

>because these patients are few and far between, so it is hard for those

>doctors to see trends. It is EASY for us to see trends for we have so many

>people that are reporting the same things!

>

>We know, however, from the hyperoxaluria literature that organs that were

>known to have been damaged by collecting oxalate will (after the continued

>source of oxalate is removed) over the period of a year or more , will

>gradually lose the oxalate they have accumulated in those tissues. Losing

>that excess oxalate restores those tissues to normal function. It is

>impossible, however, when these releases of oxalate are taking place to

>know where they came from!

>

>I thought we might see something parallel in autism, and we have, but what

>was surprising that was not emphasized in the kidney literature is the

>periodic nature of what we started to call " dumps " . I've done a little bit

>of a survey on dumping on our list with a disappointing number of replies,

>but the gist still of all of them that did reply is that at first the

> " dumps " are longer and with worse symptoms, and the longer you are on the

>diet the longer the time is between dumps and the shorter the dumps will

>last and they will generally have lesser severity. It is hard sometimes to

>make it through the early dumps. We have had some listmates get a GPL OAT

>during the dump, and THEN, the oxalate was again high. That makes

>sense! Low yesterday...High today!

>

>The normal thing to happen is that after the dump is over (and that is VERY

>obvious) then the symptoms will be gone that were a problem, and suddenly

>the child will acquire new skills and abilities. Nobody is very happy

>about what goes on during the " dump " , and yes, there are a lot of children

>who have the pain issues, and urinary issues, especially the problem peeing

>and excessive urination. Some boys get erections that won't quit!

>

>There is another group where the kidney/bladder is not so much the focus of

>these negatives, but instead, they have terrible diarrhea, or

>constipation. In another group, there are problems with congestion...so we

>think the lungs are a site of oxalate secretion. That has never been

>studied in other patient groups, though there is one study that is Russian,

>I think, where they found oxalate to be high in lung fluids in those with

>asthma or COPD.

>

>In another group, there are skin issues that crop up. The oddest one is a

>reddening of the skin that occurs along with the skin starting to ooze

>white powdery stuff. Perhaps this is oxalate...we don't have a lab that

>could test this white stuff for us nor a lab willing to test for fecal

>oxalate. (I just found a study this last week about some scientists

>studying the petrified stools of some ancient Texans whose teeth were awful

>having been destroyed by their focus on high oxalate foods in the

>diet! They found lots of calcium oxalate in those petrified stools.)

>

>I find it very frustrating that I still have not found a lab willing to

>study the feces for oxalate, for we may find (since autism is NOT primarily

>a kidney disease) that much more of the oxalate is leaving the body

>secreted from intestinal cells than is secreted from kidney tubule

>cells. We may be studying the wrong compartment by relying on urinary

>tests just because they are the only test available!

>

>However, , your son may be one of the kids who DOES secrete stored

>oxalate using the kidney route. We have found the best way to relieve the

>symptoms is using VSL#3 as a probiotic, taking calcium about an hour before

>the worst onset of symptoms if there is a diurnal rhythm to it, and taking

>arginine. Arginine helps the most with pain and there are a lot of parent

>reports on this on our list. Also, taking magnesium may help to keep

>calcium oxalate from precipitating which is probably what is causing the

>urinary symptoms.

>

>The periodicity and unpredictability of " dumping " makes monitoring symptoms

>in children a little tricky. What if it is time for a " dump " , and you just

>happened to introduce a new supplement this week. You may think the

>supplement is to blame for the symptoms, when actually, the dump would have

>happened anyway, and it is the " dump " causing the symptoms and not the

>supplement!

>

>People in the vulvar pain foundation found that many of them had classic

>signs of urinary tract infections, but when they sent the urine to be

>cultured, there was no infection detected. These same women found that

>when they went low oxalate, these troubling and constant " infections " went

>away. I think it is possible to confuse the symptoms of UTI's with the

>irritation from having excess oxalate in the urine. We also suspect there

>may be a confusion between " yeasty symptoms " and oxalate symptoms. I wish

>we had better lab tests to sort these issues out!

>

>Take home message: urinary oxalate can become suddenly extremely high when

>someone is on a low oxalate diet for the oxalate that is showing up in the

>urine has been released from tissues where those oxalates were stored a

>LONG time ago and are now finally leaving.

>

>Some of our very good responders to LOD have been patients who may have had

>a very normal looking urinary oxalate level when they began! I'm thinking

>of one child who had GPL tests for many years, and sometimes the levels of

>oxalate were very normal. She responded well to LOD, but her mother told

>me that because of her age, she had to be instiutionalized, and they quit

>the diet and she started to have seizures again.

>

>We need to understand what is happening with oxalates in autism is a

>DIFFERENT disease process. This is why we don't need to oversimplify our

>understanding of oxalates and rely too heavily on guidelines that were

>develeped to monitor kidney disease, and not to notice oxalate issues in

>the rest of the body.

>

>I hope this is making sense.

>

>At 12:51 AM 1/11/2008, you wrote:

>

> >Listmates,

> >

> >I am at a loss on urinary symptoms our son is exhibiting. We have seen the

> >following symptoms about three times in the last few years: groin pain (as

> >seen by grabbing at the crotch); frequent and excessive urination; and

>small

> >amounts of pee each time. The first two times, the symptoms went away after

> >a while (one time after reducing oxalates).

> >

> >But the oxalic acid levels went into normal range; we have not changed the

> >diet; and now we are seeing the symptoms again. It's very puzzling to come

> >out of nowhere. we just finished a round of Flagyl/Diflucan and I read

>where

> >Flagyl has a possible side effect of frequent urination, but we have been

> >off of it for over a week now and we still see the symptoms.

> >

> >I typed the symptoms into Mayoclinic.com and got the following list of

> >causes for the above symptoms: kidney infection, cystitis, kidney stones,

> >diabetes, UTI, and vesicoureteral reflux. I'm not sure what to think. I've

> >been to the doctor before on this and nothing really turned up.

> >

> >Has anyone else seen these symptoms? Any ideas on what to pursue here?

> >

> >Any help is appreciated. I hate to see the pain symptom especially and

>would

> >really like to pinpoint the problem once and for all.

> >

> > L

> >

January 11, 2008

,

Thank you for the thorough reply. What scares me the most is that I think I

understand what you are saying. Since we are seeing heavy symptoms now, I

plan to get an OAT Monday to check oxalic acid/yeast/bacteria and I am also

going to try and get samples sent in to rule out UTI, kidney infection, and

bladder infection. He does not have any fever at all so it is probably

oxalate dumping as you suggest, but I would like to rule the infections out

especially since they are simple urine samples. As a side note, last year

when we saw these symptoms, his UTI result was negative.

Just to recap, we started the LOD last May after very heavy symptoms and

oxalic acid at 107 (range 0-37) and the next OAT we took in Oct showed

oxalic acid down to 36 (just in range). So, the LOD worked to get the

numbers down and more importantly the symptoms resolved although he would

still grab his groin every once in a while. So, now we are 8 months into the

LOD and seeing symptoms spike again. If it is a dump, we should see that on

the OAT. One thing is for sure, unlike most other types of symptoms we have

seen with asd which can be vague, these symptoms are immediately noticeable

as they are unique and powerful. We definitely see it at home and the

teachers definitely report it at school.

I definitely think our son is in the category of a kidney excreter. This is

the focus of his symptoms every time. As far as your recommendations to get

thru the dump, we have been giving calcium, arginine, and magnesium but we

should pay more attention to the timing of it. However, we are not able to

give him the VSL3. It does have trace casein in it and the two times we

tried it, our son reacted to it. You may remember that he is very sensitive

to even trace casein. We do give other probiotics with similar strains

though.

Would you mind telling me how much calcium and arginine are being given and

also what are your thoughts on giving baking soda orally?

Ironically, when we put baking soda in his bath, we seem to get more (not

less) irritation. Does that mean the baking soda could be helping to release

the oxalates or is something else going on?

L

From: csb-autism-rx [mailto:csb-autism-rx ]

On Behalf Of Owens

Sent: Friday, January 11, 2008 1:18 AMSubject: Re: At a loss

on urinary symtpoms

,

It sounds to me that your son is " dumping " . After reducing oxalates, the

body is able to equilibrate, which means in tissues where oxalate was

stashed away in the past, there is a release of stored oxalate into the

blood from where it needs to find a route of escape from the body. The

kidney is one likely place to find this increase in oxalate

secretion. That means today, you can have low oxalate in urine, and then

tomorrow, when the body starts " dumping " , the levels in urine may be sky

high from oxalates that have been released internally. These oxalates are

NOT coming from the diet.

I wished when I started our Autism Oxalate Project that some doctors who

had been treating patients with primary hyperoxaluria (when the source of

the oxalate was the liver that get's transplanted) had studied this dumping

process in detail, but what we can learn from that literature is sketchy

because these patients are few and far between, so it is hard for those

doctors to see trends. It is EASY for us to see trends for we have so many

people that are reporting the same things!

We know, however, from the hyperoxaluria literature that organs that were

known to have been damaged by collecting oxalate will (after the continued

source of oxalate is removed) over the period of a year or more , will

gradually lose the oxalate they have accumulated in those tissues. Losing

that excess oxalate restores those tissues to normal function. It is

impossible, however, when these releases of oxalate are taking place to

know where they came from!

I thought we might see something parallel in autism, and we have, but what

was surprising that was not emphasized in the kidney literature is the

periodic nature of what we started to call " dumps " . I've done a little bit

of a survey on dumping on our list with a disappointing number of replies,

but the gist still of all of them that did reply is that at first the

" dumps " are longer and with worse symptoms, and the longer you are on the

diet the longer the time is between dumps and the shorter the dumps will

last and they will generally have lesser severity. It is hard sometimes to

make it through the early dumps. We have had some listmates get a GPL OAT

during the dump, and THEN, the oxalate was again high. That makes

sense! Low yesterday...High today!

The normal thing to happen is that after the dump is over (and that is VERY

obvious) then the symptoms will be gone that were a problem, and suddenly

the child will acquire new skills and abilities. Nobody is very happy

about what goes on during the " dump " , and yes, there are a lot of children

who have the pain issues, and urinary issues, especially the problem peeing

and excessive urination. Some boys get erections that won't quit!

There is another group where the kidney/bladder is not so much the focus of

these negatives, but instead, they have terrible diarrhea, or

constipation. In another group, there are problems with congestion...so we

think the lungs are a site of oxalate secretion. That has never been

studied in other patient groups, though there is one study that is Russian,

I think, where they found oxalate to be high in lung fluids in those with

asthma or COPD.

In another group, there are skin issues that crop up. The oddest one is a

reddening of the skin that occurs along with the skin starting to ooze

white powdery stuff. Perhaps this is oxalate...we don't have a lab that

could test this white stuff for us nor a lab willing to test for fecal

oxalate. (I just found a study this last week about some scientists

studying the petrified stools of some ancient Texans whose teeth were awful

having been destroyed by their focus on high oxalate foods in the

diet! They found lots of calcium oxalate in those petrified stools.)

I find it very frustrating that I still have not found a lab willing to

study the feces for oxalate, for we may find (since autism is NOT primarily

a kidney disease) that much more of the oxalate is leaving the body

secreted from intestinal cells than is secreted from kidney tubule

cells. We may be studying the wrong compartment by relying on urinary

tests just because they are the only test available!

However, , your son may be one of the kids who DOES secrete stored

oxalate using the kidney route. We have found the best way to relieve the

symptoms is using VSL#3 as a probiotic, taking calcium about an hour before

the worst onset of symptoms if there is a diurnal rhythm to it, and taking

arginine. Arginine helps the most with pain and there are a lot of parent

reports on this on our list. Also, taking magnesium may help to keep

calcium oxalate from precipitating which is probably what is causing the

urinary symptoms.

The periodicity and unpredictability of " dumping " makes monitoring symptoms

in children a little tricky. What if it is time for a " dump " , and you just

happened to introduce a new supplement this week. You may think the

supplement is to blame for the symptoms, when actually, the dump would have

happened anyway, and it is the " dump " causing the symptoms and not the

supplement!

People in the vulvar pain foundation found that many of them had classic

signs of urinary tract infections, but when they sent the urine to be

cultured, there was no infection detected. These same women found that

when they went low oxalate, these troubling and constant " infections " went

away. I think it is possible to confuse the symptoms of UTI's with the

irritation from having excess oxalate in the urine. We also suspect there

may be a confusion between " yeasty symptoms " and oxalate symptoms. I wish

we had better lab tests to sort these issues out!

Take home message: urinary oxalate can become suddenly extremely high when

someone is on a low oxalate diet for the oxalate that is showing up in the

urine has been released from tissues where those oxalates were stored a

LONG time ago and are now finally leaving.

Some of our very good responders to LOD have been patients who may have had

a very normal looking urinary oxalate level when they began! I'm thinking

of one child who had GPL tests for many years, and sometimes the levels of

oxalate were very normal. She responded well to LOD, but her mother told

me that because of her age, she had to be instiutionalized, and they quit

the diet and she started to have seizures again.

We need to understand what is happening with oxalates in autism is a

DIFFERENT disease process. This is why we don't need to oversimplify our

understanding of oxalates and rely too heavily on guidelines that were

develeped to monitor kidney disease, and not to notice oxalate issues in

the rest of the body.

I hope this is making sense.

At 12:51 AM 1/11/2008, you wrote:

>Listmates,

>

>I am at a loss on urinary symptoms our son is exhibiting. We have seen the

>following symptoms about three times in the last few years: groin pain (as

>seen by grabbing at the crotch); frequent and excessive urination; and

small

>amounts of pee each time. The first two times, the symptoms went away after

>a while (one time after reducing oxalates).

>

>But the oxalic acid levels went into normal range; we have not changed the

>diet; and now we are seeing the symptoms again. It's very puzzling to come

>out of nowhere. we just finished a round of Flagyl/Diflucan and I read

where

>Flagyl has a possible side effect of frequent urination, but we have been

>off of it for over a week now and we still see the symptoms.

>

>I typed the symptoms into Mayoclinic.com and got the following list of

>causes for the above symptoms: kidney infection, cystitis, kidney stones,

>diabetes, UTI, and vesicoureteral reflux. I'm not sure what to think. I've

>been to the doctor before on this and nothing really turned up.

>

>Has anyone else seen these symptoms? Any ideas on what to pursue here?

>

>Any help is appreciated. I hate to see the pain symptom especially and

would

>really like to pinpoint the problem once and for all.

>

> L

>

January 12, 2008

,

Thanks again for hanging with me on this. My email is jjleon1@...

If you type me offlist, I can send you the oxalic numbers back to '03 or if

you prefer the entire OATs mailed I can do that. Let me know at the email

above.

Also, it is worth noting that up until 2006, GPL had a ref range for oxalic

acid of 0 - 100 and in 2006 they changed the ref range to 0 - 37. Do you

know whether they changed the " units " which changed the range or whether

they just tightened the range because of some better info they had? I ask

because several of our OATs showed like around 80, but were not considered

high with the 0-100 scale. So, if they tightened the range because of better

info, then maybe 80 was high all along.

Re: At a

loss