Bladder issues (Interstitial Cystitis - IC) from Lyme or Bartonella?

I have Lyme and Bartonella, which I got in May 08. I took doxy until October, when my doctors stopped giving me abx. Then I switched to the Buhner herbs.

I've been having what I think is interstitial cystitis (bladder inflammation) since last October, when I switched from doxy to Buhner herbs. I have since discontinued the Buhner herbs and started on Biaxin, plaquenil (both a month ago), and zithromax (one week ago), but the bladder symptoms continue:

-frequent need to urinate, even if there's only a small amount
-sudden and definite need to go, even with only a small amount of urine present
-takes a while to start urinating - maybe 30seconds to a minute, have to concentrate to start urinating
-hard to urinate completely - still feel like I need to go afterwards, or else feel like I have to push to get it out

I don't have a bladder infection (was tested), nor have I had bladder infections before. This seems to me to be Lyme- or Bartonella-related.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?

Dietary adjustments may help. Refer to http://www.ic-network.com/diet/dietcheatsheet.html for a chart listing foods that are ok/not ok for people with IC, and you may find eating more of the ok foods and less of the not ok foods helpful for your symptoms.
I'm also having bladder symptoms...especially pain, usually after urinating. Also have the urgency and frequency. I'm on abx, so doubt it's infection...probably due to herxing in my case.

After treating lyme for 2 years and having bladder issues it wasn't until I started treating for Bartonella(which I test negative for) that those issues cleared up. I have been on Minocyclineand rifampin since September and those urges to go have stopped. Hope they stay away. Blessings

I also tested positive for micoplasma pneumonaie but I never knew what the symptoms were. Does anyone?

Yes - count me in here too;
it got better some. Occasional usage of early goldenrod (Solidago gigantea) and horse tail tea gave me some relief.
I ve heard form a friend that pelvic floor gymnastics do wonders for her. I think I will also check this out.

Razzle - thanks so much for the food list!!

I have exactly what you describe and it was made a whole lot worse when I tried to take Buhner's herbs especially andrographis. It got so bad I was in constant abdominal pain and went to the doctor to be tested for a bladder infection which I did not have. It went away when I started Ketek but slowly started to come back when I quit abx again going on the Zhang protocol for lyme. His herbs did not worsen it like the andrographis did - they just had no defense against it coming back but I was not using anything for bartonealla which was undiagnosed at that time. I went to a LLMD the first of Feb this year and was diagnosed with bartonella which can cause this. I took levaquin for a month and it was gone the first week. Then I quit abx again last week because of side effects and of course it is back. I start a new regimen today. So I am pretty sure it is bart related.
I tested negative for bart but the LLMD told me there are 30 strains and the labs only test for 3. I thought I never had the characteristic rashes either until I went online and found good pictures of papules which on my body look like little blood blisters. They were so small I never noticed them.
I hope I don't have any other tick diseases.

I didn't know that about Ketek. I think it also helps some with bartonella. I had to quit it when I got headaches.
I have a lot of yeast so I started fluconazole today which I take for a month. I think the yeast makes the urethra/bladder irritation much worse. I also was given Biaxin and Rifampin which I haven't started yet.
I was told the fluconazole also helps some with killing cysts. When I am done with that I start plaqenil for the cysts. He said the biaxn and rifampin kills bart but will also work on the lyme. I had major improvement with Levaquin as well as Ketek. Too bad about the side effects.

Hi all I haven't really posted on this sight -- but I'm wondering if any could offer any help. I have Lyme and now I have bladder issues. I have tested positive for blood in urine but not for infection and now I feel discomfort when I go. My LLMD doesn't think it's lyme related, but after doing some searching it seems that many Lyme patients have bladder problems. Has anyone tested positive for trace blood in urine? Could inflamation cause this? Could this be a lyme thing? I am seeing a urologist who wants to do a scope and I really don't want to have it done. I just am trying to figure it all out. Thanks.

Thank you for your info.  Can I ask you where you live?  I am trying to find good doctors and I just feel like I am being sent for test after test and no one is connecting the dots.  I live in NY.  On Long island.  My urologist said he hasn't heard of Lyme affecting the bladder -- so right there I was suspicious.

And them my LLMD said he hadn't heard of blood in the urnine being a lyme thing as well.  But a few other lymies I spoke to also tested positive.  I'm just soooo confused lately.  Thanks for the help!

I am definitely going to do more research before my next appt. I am sooo frustrated. I just don't feel confident in anyone.
I really appreciate your feed back. It is always good to feel like you are not alone.

http://www.ichelp.com/PatientInformation/ICQA/MeetourPanelofPhysicians/tabid/95/Default.aspx

Oops. I always do this. Lyme brain!

hello everyone i have been having bladder issues my self....i also got tested for hpv and going to have a small surgary tomorrow to have a cone biopsy....but i have been having adominal pain for a few months now and just fig it was my period and my sister triggering me off each month cause she gets her period b4 me.....but now that i have read all your replys on bladder problems with lyme now i am wondering if thats whats wrong with me. i go see my llymd next week so i will have to tell him....i have been off my meds for a month now without him being aware of this....my syptoms are as follow: adominal pain, going to the bathroom frequently, have the urge to go all the time....

thank you all....i am sure i will be on this weekend sonce i need rest after my biopsy...

jennie

I think we could mention IC dr names on here as they dont treat lyme....or am I wrong.

Dr M is one of the Pioneers of IC....I think last I heard him speak via the internet he was using Lidocaine instilled into the bladder as a diagnosis tool. I would not get a cysto or hydro at all. I did not see this dr. I was tricked into getting one so the uro would fill out disability paperwork because it would show proof that I had it......later I was told that some healthy baldders look inflamed when they are inflated like they are in a hydro. There is also a potassium sensitivity test you can have done...which instills potassium to see if you feel more pain.

I have been told by a few LLMD that Babesia can infect the bladder and cause trace blood in the urine.