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03/01/2009 04:04 PM

Bladder (Interstitial Cystitis) Lyme or Bartonella

Posts: 87


I've been having what I think is interstitial cystitis (bladder inflammation) since last November -

frequent need to urinate, even if there's only a small amount

feel a sudden and definite need to go, even with only a small amount of urine present

takes a while to start urinating

hard to urinate completely

I don't have a bladder infection (was tested), nor have I had bladder infections before.

I read online that Bartonella can cause interstitial cystitis.

Have any of you had bladder issues with Lyme or Bartonella, and did they resolve with treatment? Any suggestions to help with bladder issues?

It's not so bad, because I am not working right now, but I can't imagine going to the bathroom every fifteen minutes at an office. It also makes car trips or movies hell.

Post edited by: RainStorm, at: 03/01/2009 16:04

used quotes enlarging text for neuros to comprehend better. bettyg, iowa leader

Post edited by: Bettyg, at: 11/17/2010 10:23 PM


03/01/2009 04:34 PM
Posts: 89

i have no idea, but i will say this much that before I had Lyme Disease I had Interstitial Cystitis for five months from Feb to late may...well, four months. It was absolute hell so you have my sympathy.

Here's what helped me.

cranberry juice.

no antibiotics -- that triggers it.

exercise 1 and a half hours a day vigorous.

I was over it for about two weeks and then I got a rash in the underwear line region of my left thigh.

This was followed by a bull's eye ring . . . 10 days of doxy later and the tendonnitis started followed by trigger fingers followed by alrathrias or whatever followed by stiff shoulders with carlidge ripped. neck popping, and now some kinda plantar fasciitis...that just in.

There is no end in site.

The good news? I have a lot of stamina -- after four months of treatment. Anxiety level pretty good. Motivation needs some work and I still over-catastrophize my life at times. But doing better in some ways, worse in others.

All I can say is Interstitial cystisis is treatable and manageable and often even curable if it was triggered from antibiotics or from an infection that seems to just "persist".

I still have go -- and when I do I have to literally run...but it's not nearly as bad as it was. Don't drink diet coke or if you must do it rarely and dilute it too by chasing it with water.

03/01/2009 04:55 PM
Posts: 290

I had I. C as my doctor calls it years before my lyme. If it is true I.C if you eat anything spicy it will burn, sting and be very uncomfortable. Being diagnosed was not fun either. There are some places a scope should not go. My urologist put me on meds which helped me greatly. I was on them for several months and they helped me greatly. It took a bit of time on them and a restricted diet but it helped.

03/01/2009 04:56 PM
Posts: 87

Maybe it's not IC, because I never have burning when I urinate, and I love eating spicy food.

Not sure what it is. I hear lots of Lymies get bladder problems, but it's hard to tell what's going on.

03/01/2009 04:59 PM
Posts: 290

Have you tried going to a urologist? They may be able to give you something to help. They may do a scope on you to see if/how bad the lining of the bladder is. That is the only way you will really know if it's IC. The pain may not have hit you yet. The good thing is it is curable if you have it.

03/01/2009 08:47 PM
Posts: 171


I can completely relate. Your symptoms of the bladder exactly match mine. I was dx in June of 2008 with Lyme, have had it since 1998. I have had 3 children vaginally and my bladder was sitting very low and causing problems. I do drink a lot of fluids but I must urinate very 20 to 45 minutes. I even wake up in the middle of the nite to go. As soon as I wake up the pressure is so bad that I have to go.

I do not have any pain while urinating. Only pain when I hold it in to long.

I had 3 bladder sx since Aug 2008. 1st to repair the bladder and do a bladder lift using mesh. The 2nd sx was about 10 days later b/c due to being constipated I busted my stitches along the bladder. I also had a rectal hernia and tightening up of the vaginal wall,

In Oct I AGAIN had another sx b/c the mesh that was holding up the bladder got infected, my body was rejecting it.

GOOD TIMES. The last sx I came home with a catheter, had it for 5 days, not fun since I had to empty it every 30min to an hour.

I do not have incontinence but I do have an extremely overactive bladder. I take Sanctura but I don't feel it is really working so I'm going to call my OB to switch the meds.

Good luck and God Bless


Post edited by: krissy, at: 03/01/2009 20:53

03/03/2009 06:56 AM
Posts: 1
New Member

U can still have interstitial cystitis without burning. I knw this for a fact since I have IC without burning! I only have frequency and urgency which is extremely bothersome.

03/03/2009 12:13 PM
Posts: 96

Frequent need to urinate can be caused by many lyme related imbalances. Neurological, endocrine, or hormonal. Good luck getting to the root of your issues!

03/03/2009 12:45 PM
Posts: 201

Wow. I just went to the urologist today, because I test positive for blood in my urine -- which I am not sure if Lyme related or not yet. My urologist isn't so up to date on Lyme so if anyone tested positive for blood in urine would love to hear from you.

I feel like I do have to go a little bit more and it does feel irritated -- but not a bad burning.

He wants me to go for a sono for my kidneys and bladder. ho hum .... so off I will go.

03/03/2009 01:14 PM
Posts: 1674
Senior Member

I just read on Canlyme that besides babesia, hematuria (blood in the urine-it's an easier search with that term) is one of the more common signs in Stage II (post three months) Lyme, I posted on this a few times in other threads (I think!)

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