At a loss on urinary symtpoms

[Guest guest]

One round of flagyl usually doesn't route the

clostridia eggs that can hatch out, and I usually give

two courses with a 4 day break in-between to allow the

eggs to be available for eradication by the

metronidazole.

Any kidney stones in the family? This sure sounds

like oxalates to me, and I am not sure the lab tests

are a good way to find out - probably only strictly

doing the diet will help you know for sure. I hope

Owens joins in here.

Did he have a sensitivity test that showed diflucan

would affect the yeast infestation? You could either

do another dysbiosis and or stool test or just give

him a trial of Nizoral. Dr. JM

--- john leon 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

>

>

> [Non-text portions of this message have been

> removed]

>

>

[Guest guest]

Hi .. have you also checked to be sure it is not UTI???

Hope you figure it out soon.

Keep us posted

>

> > 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

> >

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

[Guest guest]

,

Our daughter did the same thing. Urologist found calcium phosphate crystals in

her urine- not calcium oxalate. Owens explained why - and I can't remember

all of it but it is an oxalate issue. Our urologist prescribed DDAVP which was

wonderful and cranberry juice. We opted for pure cranberry capsules 500mg. twice

daily and she's completely clear of calcium phosphate crystals. The urologists

said that she will probably always need cranberry for the rest of her life. It

worked. She was going to the bathroom up to 50 and 60 times a day. We stopped

tomatoes and high oxalate foods but the cranberry capsules and DDAVP did the

trick. DDAVP stopped the frequent urination and cranberry capsules cleared the

calcium phosphate crystals.

Holding the crotch and having pain in the groin area is an oxalate issue. I

never noticed this in our daughter until we started chelation.

Shari

At a loss on urinary symtpoms

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

[Guest guest]

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

[Guest guest]

,

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

>

>

[Guest guest]

Dr McCandless,

Responses to your comments about this urinary issue:

- With the Flagyl, we actually did do the 10 days, 4 days off, then another

10 days so that was probably sufficient.

- No history whatsoever of kidney stones on either side of the family.

- We have been doing the LOD since Spring 2007. This is what brought his

oxalic acid back in range (Oct was in range). Maybe we should check it

again.

- Yeast: Last stool test (Oct) was quite claen. Only yeast noted was

Sacc-cerevisiao which is probably from the Sac-B we give. His OAT in Oct did

show elevated Arabinose at 64 (range 0-47). I've seen it a lot higher than

that though. The only thing I would say is that we have not had much success

the last 2 or 3 times we tried Diflucan or Nizoral. We may go back to

Sporanox or Ampo-B to see if that helps.

- Bacteria: Stool test showed Klebsiella and Citrobacter with Caprylic Acid

as a good agent. I think we hit the bacteria as his ornry-ness has left. The

OAT test showed no bacteria issues.

* My hope is that it's yeast that we have not knocked out with Diflucan or

naturals and we need to cycle thru other Rx. We will check oxalates again,

but if they are still low, I don't know if that is it.

* My fear is that it could be a kidney infection, cystitis, or a UTI and

we're just not doing the right tests or looking at the right areas.

Have you heard of these symptoms before? Thank you for helping. Any other

ideas you or may have are appreciated. L

Re: At a loss on urinary symtpoms

One round of flagyl usually doesn't route the

clostridia eggs that can hatch out, and I usually give

two courses with a 4 day break in-between to allow the

eggs to be available for eradication by the

metronidazole.

Any kidney stones in the family? This sure sounds

like oxalates to me, and I am not sure the lab tests

are a good way to find out - probably only strictly

doing the diet will help you know for sure. I hope

Owens joins in here.

Did he have a sensitivity test that showed diflucan

would affect the yeast infestation? You could either

do another dysbiosis and or stool test or just give

him a trial of Nizoral. Dr. JM

--- john leon <jjleon1comcast (DOT) <mailto:jjleon1%40comcast.net> net> 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

>

>

> [Non-text portions of this message have been

> removed]

>

>

[Guest guest]

Hi .. you probably know this but if you go to Ped you can get the

tests for UTI done right there and know immeditely and your insurance

will cover it. I would do these locally since the mainstream labs are

fine with determining these issues and you can get your answer

quickly. Just my .02.

> >

> > > 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

> > >

> > >

> > > [Non-text portions of this message have been

> > > removed]

> > >

> > >

> >

>

>

>

>

>

>

>

>

[Guest guest]

, No, I need to rule that out. Based on the other replies, we also will

do an OAT to check oxalates. Thanks for replying. L

Re: At a loss on urinary symtpoms

Hi .. have you also checked to be sure it is not UTI???

Hope you figure it out soon.

Keep us posted

>

> > 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

> >

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>