bladder problem

[Guest guest]

I have a friend who has had a weird bladder disease for almost a year. It

has a long name I can't remember. They give her these horrible shots that

make her smell really bad when she exhales, like urine or boiled vegetables.

It burns all the time, she feels constantly like she has to urinate, she is

in awful pain and they just put her on percosat for the pain. Yet they have

no answers.

My question: have any of you had this type of problem with Lyme.

I have a few theories: 1- Lyme is in her bladder

2- She uses the hot tub a lot and picked up something

3- She is allergic to latex condoms

4- She is allergic to her husband's semen since they stopped latex.

Do any of you have a thought. She is in so much pain I am afraid for her

mental well being.

Thanks, SHaron

[Guest guest]

Terri,

I would make sure that rheumy knows about her bladder? and leukocytes. It might

not be significant for the average child but for a with a history of weak immune

function, through the roof ANA, and joint issues...this may be important..

So sorry you are going through this.

Strength and hugs,

bladder problem

I am wondering if anyone has had this issue and might shed some

light: Maggie (now 6), has been having issues with her bladder off

and on, but now it won't stop. She began having symptoms of a bladder

infection about 10 weeks ago. We could not get ahold of her immune,

but put her on her cipro and it quickly cleared. Without contact

from the immuno and a normal dip, we dc'd the cipro. A week later,

she was at her immuno appt and we could still not get his attention.

So, her rheumatologist dipped her again and she had an infection

again and she put her back on cipro. Within a week, she also

developed a severe viral chest infection that resulted in her lung

bleed. Her immuno finally responded and put her on bactrim. Within

4 days, she was taken off bactrim when her ANC dropped dangerously

low....they thought from the bactrim. A few days later, when her

lungs were not clearing, they put her on 10 days of augmentun. So

she has been off her antibiotics for about 14 days now and her

bladder infection is back.....her dip has the highest level of

leukocytes and she is having frequency issues. I am baffled. I

don't know how to get her over this. When she has had her UAs sent

to the lab, it is after 3 or 4 days on antibiotics and the culture

shows only a mild elevation in white cells, not consistent with

infection BUT this is while on antibiotics. Once off....everything

returns and it seems that we cannot clear it all the way.

Any ideas? I think her docs are so burned out on the non-stop issues

with the kids that I am having problems getting a response and I

refuse to end up in the ER again.

Terri

[Guest guest]

Thanks .....I bit the bullet and emailed the immuno this morning....with

no choice. I did go back and read a bit about cystitis and auto-immune

disease....UGH! My guess is that he will recommend a MUCH longer course of

antibiotics....but it is very worrisome as the one antibiotic that is best to

treat this is dropping her ANC to dangerously low levels. He usually puts our

kids on 21 to 28 day cycles to clear infections....as opposed to 10-14 day

cycles.

Terri

bladder problem

I am wondering if anyone has had this issue and might shed some

light: Maggie (now 6), has been having issues with her bladder off

and on, but now it won't stop. She began having symptoms of a bladder

infection about 10 weeks ago. We could not get ahold of her immune,

but put her on her cipro and it quickly cleared. Without contact

from the immuno and a normal dip, we dc'd the cipro. A week later,

she was at her immuno appt and we could still not get his attention.

So, her rheumatologist dipped her again and she had an infection

again and she put her back on cipro. Within a week, she also

developed a severe viral chest infection that resulted in her lung

bleed. Her immuno finally responded and put her on bactrim. Within

4 days, she was taken off bactrim when her ANC dropped dangerously

low....they thought from the bactrim. A few days later, when her

lungs were not clearing, they put her on 10 days of augmentun. So

she has been off her antibiotics for about 14 days now and her

bladder infection is back.....her dip has the highest level of

leukocytes and she is having frequency issues. I am baffled. I

don't know how to get her over this. When she has had her UAs sent

to the lab, it is after 3 or 4 days on antibiotics and the culture

shows only a mild elevation in white cells, not consistent with

infection BUT this is while on antibiotics. Once off....everything

returns and it seems that we cannot clear it all the way.

Any ideas? I think her docs are so burned out on the non-stop issues

with the kids that I am having problems getting a response and I

refuse to end up in the ER again.

Terri

[Guest guest]

My daughter has a duplicate renal system and has had Pylonephritis etc. Our best

bet is to change the chemistry of the urine. Urocit is used to make the urine

more alkaline so that bacteria cannot grow and it reduces the infections

dramatically. I also use it for kidney stones. It is potassium citrate and has

been a miracle for us.

BARBIE

bladder problem

I am wondering if anyone has had this issue and might shed some

light: Maggie (now 6), has been having issues with her bladder off

and on, but now it won't stop. She began having symptoms of a bladder

infection about 10 weeks ago. We could not get ahold of her immune,

but put her on her cipro and it quickly cleared. Without contact

from the immuno and a normal dip, we dc'd the cipro. A week later,

she was at her immuno appt and we could still not get his attention.

So, her rheumatologist dipped her again and she had an infection

again and she put her back on cipro. Within a week, she also

developed a severe viral chest infection that resulted in her lung

bleed. Her immuno finally responded and put her on bactrim. Within

4 days, she was taken off bactrim when her ANC dropped dangerously

low....they thought from the bactrim. A few days later, when her

lungs were not clearing, they put her on 10 days of augmentun. So

she has been off her antibiotics for about 14 days now and her

bladder infection is back.....her dip has the highest level of

leukocytes and she is having frequency issues. I am baffled. I

don't know how to get her over this. When she has had her UAs sent

to the lab, it is after 3 or 4 days on antibiotics and the culture

shows only a mild elevation in white cells, not consistent with

infection BUT this is while on antibiotics. Once off....everything

returns and it seems that we cannot clear it all the way.

Any ideas? I think her docs are so burned out on the non-stop issues

with the kids that I am having problems getting a response and I

refuse to end up in the ER again.

Terri

[Guest guest]

Barbie,

are there other OTC things that will do the same thing? My guess is cranberry

juice? Molly has had similar problems.....don't know if she had bacteria or

not.....it just seems that there is some sort of component to their immune

disease that causes bladder irritation from time to time.....without

bacterie.....but unfortunately,,,,,there seems to be bacteria with Maggie's

situation.....no fever.....she is saying her back hurts (she is not a complainer

and keeps it to herself....with her auto immune issues, she always has pain, but

suffers silently and goes on with life as though nothing is wrong).

Terri

bladder problem

I am wondering if anyone has had this issue and might shed some

light: Maggie (now 6), has been having issues with her bladder off

and on, but now it won't stop. She began having symptoms of a bladder

infection about 10 weeks ago. We could not get ahold of her immune,

but put her on her cipro and it quickly cleared. Without contact

from the immuno and a normal dip, we dc'd the cipro. A week later,

she was at her immuno appt and we could still not get his attention.

So, her rheumatologist dipped her again and she had an infection

again and she put her back on cipro. Within a week, she also

developed a severe viral chest infection that resulted in her lung

bleed. Her immuno finally responded and put her on bactrim. Within

4 days, she was taken off bactrim when her ANC dropped dangerously

low....they thought from the bactrim. A few days later, when her

lungs were not clearing, they put her on 10 days of augmentun. So

she has been off her antibiotics for about 14 days now and her

bladder infection is back.....her dip has the highest level of

leukocytes and she is having frequency issues. I am baffled. I

don't know how to get her over this. When she has had her UAs sent

to the lab, it is after 3 or 4 days on antibiotics and the culture

shows only a mild elevation in white cells, not consistent with

infection BUT this is while on antibiotics. Once off....everything

returns and it seems that we cannot clear it all the way.

Any ideas? I think her docs are so burned out on the non-stop issues

with the kids that I am having problems getting a response and I

refuse to end up in the ER again.

Terri

[Guest guest]

I think even with out fever it would be good for them to test for Refllux as

Ursula said. It can cause a back up without fever and if there is relux it will

cause recurrent hard to treat infections. they will probably put her on

prophylactic antibiotics until they determine what to do next. We ended up with

Vomiting an fever and a full on Pylonephritis.

BARBIE

bladder problem

I am wondering if anyone has had this issue and might shed some

light: Maggie (now 6), has been having issues with her bladder off

and on, but now it won't stop. She began having symptoms of a bladder

infection about 10 weeks ago. We could not get ahold of her immune,

but put her on her cipro and it quickly cleared. Without contact

from the immuno and a normal dip, we dc'd the cipro. A week later,

she was at her immuno appt and we could still not get his attention.

So, her rheumatologist dipped her again and she had an infection

again and she put her back on cipro. Within a week, she also

developed a severe viral chest infection that resulted in her lung

bleed. Her immuno finally responded and put her on bactrim. Within

4 days, she was taken off bactrim when her ANC dropped dangerously

low....they thought from the bactrim. A few days later, when her

lungs were not clearing, they put her on 10 days of augmentun. So

she has been off her antibiotics for about 14 days now and her

bladder infection is back.....her dip has the highest level of

leukocytes and she is having frequency issues. I am baffled. I

don't know how to get her over this. When she has had her UAs sent

to the lab, it is after 3 or 4 days on antibiotics and the culture

shows only a mild elevation in white cells, not consistent with

infection BUT this is while on antibiotics. Once off....everything

returns and it seems that we cannot clear it all the way.

Any ideas? I think her docs are so burned out on the non-stop issues

with the kids that I am having problems getting a response and I

refuse to end up in the ER again.

Terri

[Guest guest]

good deal. good luck. the UA shouldn't take more than an hour or so. Our

hospital has a policy of not doing cultures unless the UA is positive (whether

the doctor orders it specifically or not) so be sure to push for him to fuss

about getting it done if the UA is negative. He should site the symptoms and

her PID history as an indicator for micro to over-ride policy. Hopefully they

can get to the ultrasound this week.

Ursula - mom to (15) and Macey (13, CVID)

http://www.primaryimmune.org

http://www.jmfworld.org

http://caringbridge.org/ga/macey/