posted
I have been receiving treatments for interstitial cystitis (chronic inflamation of the bladder) for almost six months now. The pain/urgency/frequency has been going on for a year this month.
My urgogynecologist has recently told me there is nothing more he can do, since I am not responding to IC treatments.
I have just tested positive for Lyme.
Got started on oral Omnicef this week and feel so much better.
Anyone else have bladder problems with Lyme?
Thanks!
Posts: 27 | From Dallas. TX | Registered: Aug 2006
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Carol B
Unregistered
posted
Hi DallasGal-several of us on board have IC-including ME !
I ,too , was dealing with IC, and being treated by a urogyn, without knowing I had Lyme. I had surgery in March 06-for a bladder prolapse, also had a bladder hydrodistension (sp?) done at that time.
I was incontinent prior to surgery.
In April 06 I was diagnosed with Lyme and began treatment for it with antibiotics and supplements. Treatment for my IC includes Elmiron, 2 capsules on an empty stomach in the AM and PM. I also receive bladder instillation treatments. I'm also supposed to be following the IC diet.
Have you been to the ICA website?
IC does not rule my life the way it used to, although I am out of work on disability, it's more because of the lyme than the IC.
It is my understanding and hope that with further treatment for Lyme, the pain of IC will get better,too. My LLMD says quite a few of her patients have IC.
posted
a very good ob-gyn i've seen a few times (out of state, of course) believes it is likely that IC plays a role with me too, with the type of pain I have. I did have one type of bladder test for this that came out negative (while in another ob-gyn's care) but this dr. felt that it was not a thourough test. In the meantime he recommended I try the IC diet and it REALLY helped, but I am not super strict about it, just keep spice, berries and certain fruits including citrus to a bare minimum. I have never gotten around to getting the better IC test but this is one area that has improved with diet and seemingly the antibiotics now. (KNOCK ON WOOD; Diet changes two years ago, lyme dx and abx in the the last 6 months) And I stopped taking oral B vitamins, which everyone recommends but really was part of the problem, for me. After my lyme dx he shared with me that he has had several pain patients that have had this dx.
I think that a lyme symptom list should include pelvic/ob-gyn problems (to phrase that delicately but not precisely) Would have helped me find may way through this quicker, maybe early on even. I too wonder how many of us have had these problems.
I hope any thing from my experience is helpful.
Posts: 208 | From Santa Fe | Registered: May 2006
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
I must have been having a good day today, Carol and lymetoo beat me to this one.
I also suffer with the dreaded IC. I was diagnosed with lyme first in nov 2005 IC symptoms started with frequency in Oct 05..i originally thought it was from vitamins i was taking and really took off in Dec 05 after a round of doxy.
I believe yeast also contributed to the start of my IC.
The hydro and treating the yeast, mostly with the yeast diet helped some of my symptoms.
i could not tolerate Elmiron at all.
Im on the anti yeast diet and the IC diet....
Im out on disability mostly because of the painful bladder.
I take either urelle or azo for my bad flares.
I was at a seminar a few months ago and a LLMD said 30% of lyme patients have bladder problems.
Welcome to lymenet!!!
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"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."
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pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Yes & it wasn't Lyme related. Elmiron saved me & it hasn't returned in 3 years.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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Carol B
Unregistered
posted
Lymetutu-a tie-awww shucks-yeah, but I bet my nose sticks out more than yours-so I win! Carol
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quote:Originally posted by Carol B: Lymetutu-a tie-awww shucks-yeah, but I bet my nose sticks out more than yours-so I win! Carol
Yeah, yeah, just rub it in!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
I wonder if that is what my daughter is suffering with. Since she has been sick, she has had bladder problems that cover both extremes. Either she is up all night going every five minutes, or she can't go at all for 7-8 hours.
It really concerns me. Doc checked for a bladder infection but we have not heard a result, so I assume it was negative.
We have noticed the retention gets worse around "that time of month".
Posts: 2903 | From AZ | Registered: Feb 2006
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Carol B
Unregistered
posted
There are specific tests that can be done for IC. For me it was the hydrodistention, done under anesthesia, with pictures taken by a urogyn doc. Worth checking into-because IC can be a nightmare-although things have gotten much better for me.
posted
ps- I also had urodynamics testing done and a kidney retrograde.
My bladder troubles developed within a month of ending socalled treatment for Lyme two years ago- when I was as ignorant as the duck I was going to. He grossly undertreated me. I have since gone to an LLMD and am finally being treated correctly for Lyme.
I have Lyme and got rid of IC...I had it for months and months until I got the causative organism cultured by a specialist lab and the drug sensitivity assessed (what to take to kill off the infection).
Firstly my IC was caused by enterococcus (though all my labs done locally were negative)...the reason is it is difficult to culture so needs done at a specialist lab. I had to go to London.
However United Medical Lab in Virginia does tests like these and you can pay extra for a yeast panel.
I got rid of the urethral bleeding, shooting pain etc. but was still left with twinging. Another culture months later showed a lot of yeast...so once I took Diflucan the twinging stopped.
I have to follow the hygeine recommendations in Angela Kilmartins book on IC or I get re-infected but a small price to pay
For what it's worth I'd definately do the above before ever allowing the hydrodistension...it can make an inflamed bladder worse IMO.
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My LLMD says quite a few of her patients have IC.![[Big Grin]](biggrin.gif)
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