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

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Posted 4/2/2009 11:08 PM (GMT 0)
KO-LD
Google Schaller and bart together and his site should come up. You can find the pictures on his sight.
Posted 4/2/2009 11:15 PM (GMT 0)
Has anyone who is treating with RK heard any news about the her views on the findings at fry labs?
Posted 4/2/2009 11:19 PM (GMT 0)
Bellyboop and Mich - I am not sure about the use of Dr.'s names. I am just playing it safe I guess.

Bellyboop - I just wanted to add I think it would be difficult to get any doctor to say your bladder issues are without a doubt due to tick diseases. For me, I just wanted to know there were no stones, cancer etc. and I am satisfied for my situation that it is tied to my Lyme and co's. BTW my Lyme doc thinks bladder issues like these come from infections like Mycoplasma pneumonia and Chlamydia pneumonia - not Lyme - so there are different thoughts out there.
Posted 4/2/2009 11:46 PM (GMT 0)
Hi Rainbaby, Have you had your urine cultured to rule out a bacterial bladder infection? I sympathize with your symptoms, as they are familiar to what I have experienced. After twenty-five years of bladder problems, and many diagnoses (irritable bladder, chronic UTI's, neurogenic bladder), I was finally diagnosed with IC, following an exploratory and treatment bladder surgery in '04.

I have had very good success with the prescription, Elmiron 100 mg three times daily. Even when my IC isn't active, I normally got a bladder infection at least once per year. Since being of Elmiron, I haven't had a bladder infection for four years! Also, as discussed above, what you eat and what your drink definitely affect the bladder.

But since I have been dx'd with Lyme (and babesiosis) and on various oral antibiotic combination's for just over one year, and having read lots on the forums, I too have been interested in the possible connection between Lyme and IC.

I hope you feel better soon!
Posted 11/8/2009 8:05 PM (GMT 0)
I found that diet helps the bladder problem tremendously. I was in such pain, with blood in urine. I cut out all citrus, caffeine, chocolate, sodas especially diet drinks. Cranberry juice is too acid also. The pain went away and bladder incontinence improved. I know its lyme related. Its the same raw pain that I get in my joints and spine.  You can go to the Interstitial Bladder sites and look at diet.
Posted 11/8/2009 9:26 PM (GMT 0)
I have IC, too. I'm amazed that so far the pescriptions I'm taking don't seem to bother it much, though on week 3 of my mepron rotation I'm pretty swollen and uncomfortable. When the IC was very bad, using the IC diet, being attentive to how acidic my urine is and adjusting acidity through diet, and using prelief as necessary helped me to control the symptoms. I also read about it and used an herbal approach to treatment that worked very well. It is difficult for me to think that the IC, fibromyalgia, and Lyme (incl. babesia & bartonella) aren't in some way all connected. I always thought that when I was on the IC_network bulletin boards, and now that I have discovered I also have Lyme, it seems even more possible that there is a central cause. How could so many of us have the same diseases otherwise?

Rose
Posted 11/9/2009 7:23 AM (GMT 0)
I wasn't diagnosed yet, but my urologist thought I had this. So does my LLMD. I have all of the symptoms. The constant urgency is horrible. Sometimes I have to run to the bathroom. I also get bladder and UTI infections every 3-4 months. I'm hoping this goes away with treatment.
Posted 11/9/2009 3:11 PM (GMT 0)
CG,

A book on IC that helped me a lot was "Along the Healing Path." Also, don't know if you've been there, but IC_network.com is a great support forum. There is a lot you can do to alleviate the symptoms of IC both with natural remedies and through rx.

Take care,

Rose
Posted 8/5/2012 3:15 AM (GMT 0)
Before I post my questions, I want to make sure that people are still checking this blog. The most recent date I see if from 2009, but is anyone still reading this?
Posted 8/5/2012 3:47 AM (GMT 0)
Hi mbird,

Yes, this is a pretty old thread, and it is already kind of long (a bit difficult for the site to move around).

The best thing for you to do, would be to start up a new thread with your questions.

Thanks!
Posted 8/6/2012 6:19 AM (GMT 0)
I have had interst. cystitis for years, I was seeing a pelvic floor specialist but had to stop from being so sick from lyme. Yes these are symptoms, sometimes after I lay down in bed for the night, I may get up anywhere from 10-15 times to urinate, very small amounts, but a strong urge, and sometimes hesistancy, they put me on elmiron which is used to restore the lining of your bladder. I was then doing bladder instilations, they actually take on elmiron capsule and install it with a catheter, and it was like immediate relief, no more pressure in my bladder, they said just taking the elmiron capsules by mouth will work, but it takes a long time many months, anyway, I stopped treatment, I feel right now I have to treat the lyme specifically and I think many of these symptoms will go away, i've been told I had fibro for many years come to find out it was probably lyme all along, and am sick of treating symptoms, when what I needed all along was to treat the infectious components. Also elmiron is an expensive med, and I need all my money for lyme treatment right now. but if it's very bothersome to you you can have the bladder instillations. I am very curious to see if this and all my pelvic problems go away with treatment. And as someone else said, drinking water is great for this, it makes your urine less acidic, so it's less irritating to your bladder and lining. And it actually does not cause me to urinate more, but less. I'm always dehydrated.
Posted 3/25/2013 5:07 PM (GMT 0)
Hi - I did not test positive for Lymes (but two bands did come back INDETERMINENT), but I did test positive for Clymidia Pneumonia and micoplasma.

I have been having urinary frequency and urgency issues for 2.5 years now, and I'm wondering if there is a connection. I found links on the internet linking C.Pneumonia to bladder issues (and also prostatitis).

Can anyone share what medications they are taking that specifically helped with the bladder symptoms?

My doctor is treating me as if I have Lymes (which is also the Wheldon protocols) which includes 100mg Doxy twice a day, with Azithromicyn 3 times a week (pulse). Later on he will introduce/pulse Tindamax.
I also get 1 drop twice a day on Byron White's A-Mico, as well as garlic capsules (Allicin) and Codyceps.

Right now, my bladder conditions have ramped up big time, so was wondering if that could be die-off.
Posted 9/14/2014 1:40 AM (GMT 0)
Is it possible if being treated for lyme and co some other opportunistic bug is aggravating bladder? I felt I was starting to improve now the thyroid spike and this indx bladder issue. I am so confusec and frustrated.
Posted 6/15/2017 9:25 PM (GMT 0)
This post is old but I thought I'd share my experience. I treated Lyme, Babesia and Bartonella with prolonged anti-malarial and antibiotics. The symptoms have VASTLY improved though the treatment.

So we thought it was Lyme and co-infections that were the problem but I just found out I have a virus in my urine and it can cause urinary symptoms. The NP (I adore her btw) thinks this might be the missing link.

There is some sort of treatment for it but I haven't yet heard back about treatment because she is in the process of consulting with a doctor about it.

In ALL of the patients she has seen (and that's a lot) only one other patient tested positive for it.

I read all the time that doctors do urine tests but the problem comes in if you are just being tested for e.coli or simple organisms.

There is much more advanced technology now so you can do a PCR test to detect the presence of bacteria DNA. I know that PathoGenius offers advanced testing.

I was given the run-around with my bladder for 14 years. If just one person sees this post and can get help it's worth sharing my story. You don't have to suffer for 14 years. However, you do need a specialist to treat this and I have not ever found one MD who can treat it but I know that this NP (Ruth Kriz) has had enormous success. If you type in Ruth Kriz on Google you will get all sorts of hits from the "Interstitial cystitis" sites.

When you have multiple infections (as I have) it's hard to tell what is causing what. But the virus is hopeful and so is Ruth.

I should however let you know that I was treated by one of the top Lyme professionals in the world and he didn't know what to do with my bladder and he told me that straight up.

Just because you have Lyme it doesn't mean it's necessarily responsible for the IC or bladder symptoms or whatever we call it.

I too thought it was Lyme but I am convinced that it's not after years and years of antibiotic and co-infection treatment.

Post Edited (kayaklove) : 6/15/2017 3:33:05 PM (GMT-6)

Posted 6/15/2017 9:37 PM (GMT 0)
I had the very same bladder symptoms off and on (more on) since August of '12. Tested several times for infection which there never was.
A few months ago I tested positive for Lyme, Ehrlichia, and Bartonella. Since then I have been on doxycycline and the bladder issues have disappeared.
Posted 6/15/2017 10:26 PM (GMT 0)
I have a urologist who says Lyme and Bart and ic have nothing to do with each other.

He also says he sees hundreds of ic patients a month. Hope these guys wake up some day.
Posted 6/15/2017 10:43 PM (GMT 0)
WOW.

This thread has had almost 21,000 views (weird - HW.com so glitchy - it said 209,800 there for a minute until I refreshed - but still 21,000 views is significant. What does that tell you?

-p
Posted 6/15/2017 11:10 PM (GMT 0)
Lots of screwed up bladders 🤤
Posted 6/16/2017 1:39 AM (GMT 0)
Hi - this is a very long thread, so I didn't read all of the responses, but here is mine:

I had this at the beginning when I was first sick. I was in the bathroom like 18-20 times a day, but no problems at night.

D Mannose is awesome. It binds to any bacteria in the UT and pulls it all out when excreted. a very bland diet would be a good idea too. And yes, drink as much water as you can, bc it will flush it out. there is "stuff" (bacteria) floating around in your UT which is causing your symptoms.

Try D Mannose, it worked for me! If you have any questions about it, please don't hesitate to ask. But I am confused - why are you on Biaxin and Zithromax, they are both from the same class of antibiotics and work the same way?!! I would consider switching Biaxin to Bactrim. The bactrim and zithromax combo are what worked for me - i had lyme and bart too.
Posted 6/16/2017 2:07 AM (GMT 0)

Chapelle said...


Try D Mannose, it worked for me! If you have any questions about it, please don't hesitate to ask. But I am confused - why are you on Biaxin and Zithromax, they are both from the same class of antibiotics and work the same way?!! I would consider switching Biaxin to Bactrim. The bactrim and zithromax combo are what worked for me - i had lyme and bart too.

Chapelle - just an FYI - the OP hasn't been on the forum for 7 years.
Posted 6/16/2017 2:50 AM (GMT 0)
OMG how funny!! I read 2008 in the post, but did not look at the original date. oops!

obviously someone on the forum brought the post back to life, but I did not realize that. HA.
Posted 6/16/2017 2:57 AM (GMT 0)

Chapelle said...
OMG how funny!! I read 2008 in the post, but did not look at the original date. oops!

obviously someone on the forum brought the post back to life, but I did not realize that. HA.

I just didn't want you to be waiting for a response from the OP - as you might not get one!

Yes it was resurrected today.
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