MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
Hi gang,I have fought the lyme,babs well but this bladder pain is just to much.
My urologist had me on elmiron for 4 months with no improvement.He wanted me to keep paying the terrible co payments and taking elmiron.I stoped taking it.(cant afford it)!!!!
I requested to try the Monurol but neither he nor my family duck will prescribe it.
I am back to calling ducks Ducks!!!!!!
Quacks!!!!!!!!!!! GRRRRRRRRRRR!!!!
MADDOG
Posts: 4083 | From Ohio | Registered: Oct 2000
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Hope you find something that will help. My treatment for Lyme helped me a lot.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Hi,
Have you visited the LymeTreatments Yahoo group - this is a group of Lyme patients whose initial or most pronounced symptom is IC. There are a couple of practitioners they see who seem knowledgeable about the Lyme/IC connection.
Take care - it's horrible pain. I'm sorry you're going through it.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Hi Maddog,
"IF" your still talking to me!!
Is their ANY chance of remedial help where you work?? Even a tarp curtain and positive air flow in your area would 'help'.
I saw a 6' squirel cage fan that came out of a old style movie theater once that moved 'tremendous' volumes of air,and oh so quiet!!(used before AC in a movie house)
Other than that,,,I also suggest seeing a specalist and seeing IF they can help. 'Maybe' not even mention lyme,,,just the fact that your IC is sooo bad,,,see if they can 'help'.
With YOU its the IC,,,with me its my 'eyes'. Its getting so bad I cant see peoples faces in church,,,from half way back. You know it gets bad when 'reading' glasses helps looking 100' away!!
Did the IM 'pen' help with your IC symptoms last time you used it?? "IF" it did,,can you try that again??
I cant remember 'who' you saw for a LLMD,,,can he/she help with this?? IF you dont have one,,,can you find a GOOD one and go see him?? Even at GREAT distance to you,,,I have an idea of affordable and cheap transportation for YOU!!!(PM or e-mail me for THAT info)
Where we were last year---105-110 degrees 'again' days on end,,,its a real heat box out there!!
And so much controversary on the 'Niobrara' these days. The power company is considering if to 'take control' over the whole river,,,least its water!!
Hope YOU find relief,,,you so need to find a place you can exist with this IC!!! Tell us what helps,,,and what hurts this condition for YOU!!!sadly--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Why won't they prescribe Monurol- that's crazy!!! It is a listed treatment for bladder problems!!! IN FACT it is FOR IC!!!!
Like I said, I took 2 packets instead of 1 because 1 only worked to lift the symptoms for a couple of days- but since the 2 packets it has been 100% gone!!! You are not supposed to but IT WORKED darnit!!! I wish I could get some for you but I don't know anybody on it- do you have a friend who is a doctor who could prescribe it for you???
Monurol is an antibiotic used to treat bladder infections (cystitis) in women.
Most important fact about Monurol Return to top
You need take only one dose of Monurol. Additional doses won't speed a cure, but will make side effects more likely. If your symptoms do not improve in 2 to 3 days, contact your physician.
Monurol is packaged in a sachet, which contains granules of the drug. Open the sachet and pour the contents in 3 or 4 ounces (half a cup) of cold water, stir to dissolve, and drink immediately. Do not use hot water. Do not take the drug in its dry form. The solution can be taken with or without food.
If you miss a dose... Only one dose is needed. Storage instructions... Store at room temperature.
Side effects cannot be anticipated. If any develop or change in intensity, inform your doctor as soon as possible. Only your doctor can determine if it is safe for you to continue taking Monurol.
More common side effects may include: Diarrhea, headache, nausea, vaginal inflammation, dizziness, indigestion, weakness
Why should Monurol not be prescribed? Return to top
If you have an allergic reaction to Monurol, avoid it in the future. The drug is used only for bladder infections, not for infections of the kidney (pyelonephritis).
************************************
IC was incredibly painful and I am so so so sorry- if it was me Maddog I would probably be tracking down bladder abx all over the internet and mail ordering them and doing self-care because it sounds like you are NOt being taken care of!!!
VERY sorry to read this- IC sucked!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Im soooo sorry. I have IC too, and ive been in a week long flare.
Physical therapy for my pelvic floor muscles helped me a lot (yes men have these too)
what are some of your symptoms? Ic seems to be different for everyone.
I really really feel your pain. This symptoms is why i am still dibilitated and cant work.
I forgot to mention elmiron did nothing for me at all, just gave me pulsing thruout my body.
Neurontin helps a lil bit as does xanax.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
My symptoms were chronic bladder AGONY, pain during intercourse, pain during urination and chronic bladder AGONY and chronic bladder AGONY and chronic bladder AGONY and chronic bladder AGONY and chronic bladder AGONY and chronic bladder AGONY and chronic bladder AGONY and chronic bladder AGONY and chronic bladder AGONY and chronic bladder AGONY and chronic bladder AGONY and chronic bladder AGONY and chronic bladder AGONY!!!!!!!!!!!!!! Went away 100% when I overdosed myself against medical advice with Monurol!!! 2 packets in 2 days!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Some on the yahoo lyme board are finding Group D strep (enterocoucus) infections on their cultures via a special lab that lets the culture grow for more than the standard two days.
I looked up the Monurol and it did say it was good for a strain of the enteroccous, maybe that is why you felt better?
I know some have 'cured' their IC with amoxy.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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Cobweb
Unregistered
posted
IC/infections just about drove me mad. My first urologist was an ignoramous of the highest order.
Fortunately my GYN referred me to a Urogynecologist who was excellent.
Are you sure it's IC? Mine was diagnosed, actually confirmed by urodynamics, blowing my bladder up(while I was under)and taking pictures.
I also had a bladder repair. For a while I gave myself treatments by self catheritization-but it got expensive and I couldn't really tell if it was helping.
I continue to take oral Elmiron-which can take a while to be effective.
The reason I asked if you had confirmed by visualitzation IC as it sounds like your doc clinically diagnosed IC, gave you a trial run of Elmiron to see if it helped.what if it's still infection? which needs antibiotic.
I no longer have recurrent infections, much much less pain and I'm thinking , if I dare, I can even go without my pullups now. although they are a good thing to have on hand if you haven't done laundry in a while and need a pair of clean underwear.
posted
okay MADDOG, I'm a bit slow-perhaps a urogynecologist may not be the doc for you. ya think?
Anyway- check out the websites Lymetoo suggested. And be sure it's IC you're dealing with and not an on going infection. A good Uro can take pictures of IC in the bladder-and you won't feel a thing cause you'll be in la la land.
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MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
Hi gang,yes it is IC,the doc put me out and ran a camera in there.
I got the pictures to prove it.
My work chems. really set it off, toulene, zylene,perchchlorethlene,gasoline ect..
I cant go into a Wallmart anymore, the auto shops in there spray the same chems..
Inhale any auto shop fumes and I am in agony.
I faithfully took elmiron for 4 months ,it didn't even put a dent in the problem.
I can't sleep when it is real bad ,how many times can a person get up to pee in one night.
All the fire hydrants have left my town and have hid out some were.
Not going to work stops the problem unless I get around the chems. somewere else.
Even bleach fumes inhaled from my laundry room set it off.
MADDOG
It means the loss of income soon,while I wait on the big fight with SSDI.
Posts: 4083 | From Ohio | Registered: Oct 2000
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Cobweb
Unregistered
posted
Yeah-I got a picture,too.
My doc also prescribed Amotryptalin(SP) for me to take at night. Suppose to relax the muscles and help you sleep or something.
That's the med that didn't help me with IC.so I stopped. perhaps it will help you.
I am on disability-but had to wait for 6 months for first check- ran out of money after three months-not a good situation financially.
I also felt better on Cipro-but then I had an allergic reaction-bad hives after one dose.
There's an IC diet as Lymetoo mentioned.
Anyway-IC is the least of my problems now. But you're right MADDOG-IC is a b!tch
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Cobweb
Unregistered
posted
What was your dose of Elmiron? I take 2 100mg capsules first thing in the morning on an empty stomach, and 2 100mg at bedtime on an empty stomach. 400mg total per day.
cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
I got pics of my blad too. beginning of IC i was told. Good luck with SSDI.
My work disability cut me off, had to hire a lawyer to try and win it back for me. Seems some dont see how disabling this IC can be.
I wonder if a muscle relaxer would help you at nite...it has helped me, have you tried pyridium or any antispasmatics? Urelle is pretty cool turns your pee a pretty blue color.
There is also Azo standard(over the counter) will temporarily help, but you cant take it long term.
Cobweb- I envy you, i was having 3 good weeks with the bladder but now the muscles are all spasmed and there goes the bladder.
Hang in there maddog, there are plenty of bladder meds you can try. Most are temp fixes...but atleast offer relief.
I heard Elmiron is only 38% affective.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
So sorry your in pain. I have had problems with IC as well. What worked for me was unsweetened cranberry juice every morning in some water. My LLMD has me take a product called ACTIBIOTIC made by (complementary prescriptions. ) Also D-mannose also seemed to help.
Hope you feel well soon. Posts: 30 | From northern california | Registered: May 2007
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and I'm thinking , if I dare, I can even go without my pullups now. although they are a good thing to have on hand if you haven't done laundry in a while and need a pair of clean underwear. ![[Frown]](frown.gif)
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