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» LymeNet Flash » Questions and Discussion » Medical Questions » Interstitial Cystitis caused by Bartonella

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Author Topic: Interstitial Cystitis caused by Bartonella
MissVictoria
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Hey,

What do you guys recommend to treat Interstitial Cystitis?

I have been on Elmiron for many years and it's amazing. I also drink aloe vera juice every day to help my bladder. I've been doing really well, but for the past two months, my bladder has been VERY upset and I'm not sure what triggered it. I have the feeling of urgency to pee constantly and I have to push my pee out.

I'm looking for ways to reduce my bladder inflammation.

Do you think a tumeric supplement would help? It's very anti-inflammatory, but I don't know if it's spicy. Spicy foods make my bladder symptoms really bad

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Lymetoo
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Curcumin would be easier on the gut.

Are you eating foods high in oxalates? Spinach, sweet potatoes, potatoes, beets, etc?

--------------------
--Lymetutu--
Opinions, not medical advice!

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MissVictoria
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Thank you

no, I don't eat those types of food often

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ziinzia
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The "urgency to pee" could be caused by a bladder infection (urinary tract infection). If it's really bad, it could be a kidney infection. Check with your PCP.

Try drinking cranberry juice. I was told that cranberry juice helps w/ bladder infection. I don't drink the juice, but I eat tons of dried cranberries.

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Lymetoo
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Good... high oxalates can cause bladder pain.

Yes, make sure you don't have an infection.

Also... Mast Cell Activation Syndrome can make IC worse... I believe it causes IC. (but so can any infection)

--------------------
--Lymetutu--
Opinions, not medical advice!

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Bartenderbonnie
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Oh no MissVictoria, I m very sorry to hear this.

Do you have pain ?

You have to ask yourself what is causing inflammation in your bladder ?

Do you see a urologist ? Did he/she order you a urine culture ?

My wide spread Lyme and company pain combined with my I.C. pain made me question if life was worth living. It was that bad.

My urologist got to third base with me on my very first appointment. He inserted a catherdeter into my urethra filled with heparin, lidocaine, and antibiotics. Instant relief although short lived.

My urine culture showed mast cells, inflammatory cells, red blood cells, and an unideniflied organism. I believe it was caused by Bart but they didn't test for it.

I have thrown the kitchen sink at this. D-mannose, mashmellow root, IC diet, OTC bladder products, gabapentin, hydroxyzine(prescriped), and weekly cathedral treatments.

After 6 months of continuous Lyme and bartonella treatment, it finally went away. What an AWLFUL ride !

Maybe you will find this helpful :

http://tenaciouspt.blogspot.com/2016/10/histamine-intolerance-may-be-affecting.html

I recently got new tick bite and my IC pain is back so it looks like I'll have many more dates with my urologist.

Good luck to you dear.

P.S. Xanax also helps to relax the bladder.

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Lymetoo
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Look at oxalates also, bonnie.

Xanax is a mast cell stabilizer.

--------------------
--Lymetutu--
Opinions, not medical advice!

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bcb1200
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This can also be pelvic floor dysfunction. I went through this in 2015 and swore it was my bladder, IC due to Bart, Protomyxzoa, Lyme, etc.

It wasn't. My structure was really screwed up. Twisted pelvis rolled forward, etc.

Find yourself a good, classic Osteopath. After 2 months of treatments all of my symptoms resolved. Your back, particularly L5/S1 interface can put a lot of tension on nerves, etc, which cause these symptoms.

I'm not saying IC isn't real. It is. And you could have it. But it could also be structural and Lyme can turn up the intensity.

--------------------
Bite date ?
2/10 symptoms began
5/10 dx'd, after 3 months numerous test and doctors

IgM Igenex +/CDC +
+ 23/25, 30, 31, 34, 41, 83/93

Currently on:

Currently at around 80% +/- most days.

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MissVictoria
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Thanks guys

I just went to my urologist last week. My urine culture was normal, so I don't have an infection. This is an Interstitial Cystitis flare-up. I just thought about it, and this does typically happen to me about once a year

Bonnie, I very highly recommend Elmiron. It is the only medicine that treats Interstitial Cystitis and it is amazing. I was diagnosed with IC from a cystoscopy with my urologist and I started Elmiron the same day. I have never had an episode of extreme pain again since starting Elmiron and my bladder has been doing really well. Definitely ask about getting a cystoscopy to see if you have IC. Bartonella is known to attack the bladder, so you might want to be tested for it. Drinking aloe vera juice every day, and after eating bladder-irritating foods, has made a world of difference to my bladder, as well, because it is highly alkaline. When I'm not having a flare-up, my bladder is almost normal, so there is hope for you [Smile] Hang in there xoxo

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MissVictoria
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bump
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Bartenderbonnie
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I have been diagnosed with Bart, Lyme, m. pneumonia, I.C.and CVID.

My IC went away recently, along with most of my Lyme symptoms after Lyme and Bart protocols.

I have had a cystoscopy and a bladder distention under general anesthesia. It also provided instant relief but short lived.

It isn't a coincidence that all my problems are back after recent tick bite. My immune system is non-existant due to CVID so anything little is major to me.

Hopefully someone has more answers for you. Sorry.

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hopingandpraying
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MissVictoria - please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme. Thanks.

Click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.

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luvmycat
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I have a friend with IC.

One of the drugs she uses is the old anti-depressant drug, Elavil (amitriptyline).

I have also read where low-dose naltrexone (LDN) can be used to relieve the inflammation caused by IC.

Do some googling on these two treatments.

--------------------
Luvmycat


A mind is like a parachute. It only functions when it's open.

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Bartenderbonnie
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I have tried amitriptyline but made me more spacey.

My LLMD wanted to prescripe me LDN but I declined. Next visit I ll tell her I changed my mind. Sounds promising. Thanks.

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luvmycat
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I've been on LDN for about 4-5 weeks now. Started at 1.5 mg increased to 3.0, then to max dose of 4.5.

My LLMD said that my central nervous system is "highly inflamed."

I don't notice any difference being on the LDN and have no side effects, but it may be helping me in ways I don't notice.

So, I will continue to take it.

It's harmless and it sure can't hurt.

--------------------
Luvmycat


A mind is like a parachute. It only functions when it's open.

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