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» LymeNet Flash » Questions and Discussion » Medical Questions » Interstitial Cystitis Flare-Up

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Author Topic: Interstitial Cystitis Flare-Up
MissVictoria
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What helps you when you're having an IC flare-up that last for weeks or months? Have you found anything that ends the flare-up entirely?
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Bartenderbonnie
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Yes, 100mg Gabapetin completely put my flares in remission.
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Keebler
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If would be important to get a culture done by your doctor so you know if there is a particular pathogen as the cause.

This should be done before any kind of antibiotic or other antimicrobial Rx. see recent article in next post.

OXALATES can be a major player, with or without infection on board:

You might want to be sure you are eating a low-oxalate diet. For instance, avoid spinach, almonds and other things that are especially high in oxalates as they can be the problem -- or part of the problem with other things to consider.

A very low oxalate diet has helped me so much with bladder irritation and a similar issue of vulvodynia. Rinsing, too, a major help.

Facebook: Trying Low Oxalate - Susan Owens' group

&

https://sallyknorton.com/category/oxalates/

Sally K. Norton - Oxalate blog post

RINSE:

Also of help: with an clean empty squirt bottle rinse off uro-genital area each time after using the toilet, while still sitting on the toilet, though and then gently blot without too much force as you dry off with unbleached TP if you can find that.

Try to find a top that can aim right down and not go flying all around the bathroom.

Wear only full cotton underpants and no pantyhose or tights. If possible, try to wear a skirt rather than pants that can prevent good circulation of air.

Hope you feel better soon.
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Keebler
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This ignores some of the other things that I mention above -
and I find that annoying. However, this does emphasis two points:

Be mindful of raw poultry as that has been found to be problematic with e coli and bladder infections / UTIs

& the importance of always - always - getting a lab culture before starting any Rx as

the wrong Rx is so often used and that can make it worse if it is not matched specifically to the kind of microbe causing the infection -- if the UTI is from infection, and not due to other reasons.

https://www.nytimes.com/2019/07/13/health/urinary-infections-drug-resistant.html

Urinary Tract Infections Affect Millions. The Cures Are Faltering.

As the infections become increasingly resistant to antibiotics, some standard treatments no longer work for an ailment that was once easily cured.

By Matt Richtel - The New York TImes - July 13, 2019
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Keebler
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https://www.healthline.com/health/d-mannose-for-uti#research

Can D-Mannose Treat or Prevent UTIs?

- Healthline - May 2019
-

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Rumigirl
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quote:
Originally posted by Bartenderbonnie:
Yes, 100mg Gabapetin completely put my flares in remission.

Do you mean that 100 mg of gabapentin once a day got rid of it? Or several times a day?

Do you only have to take it when having a flare?

I have been meaning to ask you if you got over it, as it is so terrible. I know that it's connected with Lyme and Bart---or I sense that.

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Rumigirl
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Thank you, Keebler, for all of your information, and especially about a low oxalate diet. You are always so very helpful.
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dogmom2
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marshmallow root has worked for me on 2 separate occasions. Upset my stomach after 1 week but didn't need it anymore by then.

Urostat for the pain while the m. root starts to work.

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Bartenderbonnie
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IC Pain is the WORST !
That was almost a deal-breaker for me. Waiting in the urologist's office, 2 hours, once a week, room full of patients, 20 trips to the bathroom, and in excruciating pain for months and months.

Urologist had me on hydroxyzine. Did nothing.
Weekly catheder treatments. Blow up bladder surgery.
Pain always came back.

I was also seeing a Neurologist at this time for chronic vertigo and chronic pain. He put me on Gabepentin. It did nothing for my vertigo and pain but it Miraculously cured my IC bladder pain.

I was so impressed, I told my urologist to please offer it to his other patients as it might help them.

I haven't had a flare in over a 1 1/2 year.. I do not take Gabepentin at all. But if I do notice any symptoms, like being unable to hold a teaspoon of urine in my bladder, believe me, Gabepentin will be the first line of defense.

Keebler is right on about getting a urine culture.
Primary's like the rapid urine test strips done in their office.
If you have symptoms, they will order an urinalysis.


But you need a culture done. This will let your sample grow for a few days to see if any visible bacteria or fungi grow. Of coarse you might get results like mine that said 'an unideniflied organism' present. I believe it was Bartonella or a BLO.

Sorry for your pain MissVictoria.

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kidsgotlyme
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MissVictoria, I am so sorry you are having a flare up. I hate it!! I am having a bit of one myself at the moment.

In the past, when I was in a constant flare and couldn't get rid of it, I swore up and down to my urologist that I didn't have a UTI. Turns out I did and I was so embarrassed for acting a fool in the office. I just wanted my bladder instill and for them to leave me alone but that was because I was in SO MUCH PAIN!

What I have found is watching my diet extra carefully when pain comes on because diet still does matter with IC. Since I've begun treating for bartonella, my flare ups have been doing so much better. Well...it was until starting Rifampin but I was expecting it.

Hydroxyzine helped me in the past but I quit taking it long term because of side effects. Elmiron helps...again quit taking it because my hair was falling out.

Marshmallow root was mentioned by someone else. That has helped soothe my bladder. Neurontin helps.

What made me worse was the D-Mannose. I know it is said to help others.

Uva Ursi is another herbal remedy that helps some. I have it but have never gotten the nerve up to try it. I have a real phobia about starting anything new.

Hope you feel better soon.

--------------------
symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections.

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Rumigirl
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quote:
Originally posted by Bartenderbonnie:
IC Pain is the WORST !
That was almost a deal-breaker for me. Waiting in the urologist's office, 2 hours, once a week, room full of patients, 20 trips to the bathroom, and in excruciating pain for months and months.

Urologist had me on hydroxyzine. Did nothing.
Weekly catheder treatments. Blow up bladder surgery.
Pain always came back.

I was also seeing a Neurologist at this time for chronic vertigo and chronic pain. He put me on Gabepentin. It did nothing for my vertigo and pain but it Miraculously cured my IC bladder pain.

I was so impressed, I told my urologist to please offer it to his other patients as it might help them.

I haven't had a flare in over a 1 1/2 year.. I do not take Gabepentin at all. But if I do notice any symptoms, like being unable to hold a teaspoon of urine in my bladder, believe me, Gabepentin will be the first line of defense.

Keebler is right on about getting a urine culture.
Primary's like the rapid urine test strips done in their office.
If you have symptoms, they will order an urinalysis.


But you need a culture done. This will let your sample grow for a few days to see if any visible bacteria or fungi grow. Of coarse you might get results like mine that said 'an unideniflied organism' present. I believe it was Bartonella or a BLO.

Sorry for your pain MissVictoria.

Bartender Bonnie,

Thank you for your response! I forgot to look for it until now (brain badly affected--arghh).

I gather that 1/ the gabapentin broke the cycle of the pain, 2/ I am presuming that treatment for Bart helped get over it, too. Is that correct that treatment for the Bart helped in the longer run?

When you did the 100 mg of gaba, did you take that 3 times a day?

Sorry for all the questions! I'm trying to figure out what might help. There are so many fronts to work on at once with TBD's!! It's overwhelming. Preaching to the choir, here.

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Bartenderbonnie
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Totally understand you're overwhelmed Rumigirl.
My social calendar consists of nothing but healthcare provider's appointments.

My Bart is back.
But my IC Bladder is not.

Ive gotten Gabepentin scripts from Neuro's, pain management, primary, rheumotogist, they hand them out like candy. Not an opioid, low percentage of overdose or mis-use. They recommend a dose of 900mg daily, so they will order the 300mg tablet. You start slow, 1 300 mg per day and work your way up to 900 mg.

For me, the dose is too high. Side effects are drowsiness, severe dizziness, unable to drive, think, walk, unable to do daily chores. Even the next day, effects still linger.

So I requested the 100 mg capsule.
Neuro said that dose would serve no purpose but ordered it for me. It is the perfect dose. I take 1 capsule as needed, which is very seldom. Take at night. No side effects, no bladder pain.

For my wife-spread chronic pain, I take other pain relievers that cause less side-effects,

It's like wack-a-mole with this horrific disease.

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lymenotlite
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Here are some other ideas:

https://earthclinic.com/ailments/interstitial-cystitis/

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Rumigirl
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quote:
Originally posted by Bartenderbonnie:
Totally understand you're overwhelmed Rumigirl.
My social calendar consists of nothing but healthcare provider's appointments.

My Bart is back.
But my IC Bladder is not.

Ive gotten Gabepentin scripts from Neuro's, pain management, primary, rheumotogist, they hand them out like candy. Not an opioid, low percentage of overdose or mis-use. They recommend a dose of 900mg daily, so they will order the 300mg tablet. You start slow, 1 300 mg per day and work your way up to 900 mg.

For me, the dose is too high. Side effects are drowsiness, severe dizziness, unable to drive, think, walk, unable to do daily chores. Even the next day, effects still linger.

So I requested the 100 mg capsule.
Neuro said that dose would serve no purpose but ordered it for me. It is the perfect dose. I take 1 capsule as needed, which is very seldom. Take at night. No side effects, no bladder pain.

For my wife-spread chronic pain, I take other pain relievers that cause less side-effects,

It's like wack-a-mole with this horrific disease.

Thank you, bartenerbonnie. I could never take gabapentin in the daytime, and my pain (CRPS, not just IC) is too great at night for gabapentin to cut it.

And yes, my social calendar is similar : - (

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Rumigirl
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quote:
Originally posted by lymenotlite:
Here are some other ideas:

https://earthclinic.com/ailments/interstitial-cystitis/

lymenotlite, looks interesting, I have to go back to read more. And the Zoloft causing IC---arghhh! The side-effect of all drugs, which doctors rarely quite aware of.
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