A Bump In The Road: Dealing With An Interstitial Cystitis Flare

I encountered a discouraging bump in the road last week. In addition to Lyme Disease, I have an inflammatory bladder condition called Interstitial Cystitis (IC).

Marked with bladder pain, urinary frequency and urgency, I have had this condition since 2005. It was fairly well-controlled for about 4 years. I even thought the most difficult days of dealing with IC were behind me. Unfortunately, this flare-up shows my bladder has more healing to do.

As I struggle to understand why I am once again experiencing such severe bladder symptoms, I decided to take a specialized urine test from a lab called Pathogenius. The lab performs testing at two different levels using a culture and DNA detection. My nurse practitioner only recently began working with this lab. Whether or not a patient improves using treatments designed around this testing method, remains to be seen.

My level one culture came back negative. However, the DNA portion of the test detected abnormally high levels of a bacteria I was unfamiliar with called Prevotella Bivia. This bacteria is not a tick-borne infection like the others I am battling. In fact, some amount of this bacteria appears to be present in healthy individuals and poses no trouble to them.

Perhaps my immune system, already suppressed by multiply systemic infections, could not keep this bacteria in check and my bladder became symptomatic again.

That’s my best guess.

After reviewing the results, my nurse practitioner presented me with two treatment options:

Option A is to instill medication directly into my bladder via self-catheterization. A two-week course of medication and supplies arrives at my house from a compounding pharmacy. It’s not covered by insurance, so my out-of-pocket cost would be somewhere between $200-$500. A second, two-week round of the instillations is usually required. For a one months supply, the total cost is between $400-$1,000. This is in addition to the $1,000+ per month my husband and I currently pay out-of-pocket for my treatment.

The pros of this treatment are:

1) It delivers medication directly into the bladder so the antibiotics do not have to bypass the GI tract where it can disrupt normal gut flora or interact with the other medications I am taking.

2) It’s an innovative new approach to treating interstitial cystitis.

The cons are:

1) It’s expensive to do and I question whether it’s sustainable for the average person over a long period of time. Several courses of treatment could be required to achieve maximum benefit.

2) Repeatedly doing bladder instillations carries the risk of contracting a urinary tract infection, which is then treated with another oral antibiotic.

3) This treatment is so new that it is not yet known what the rate of success is.

A pit in my stomach formed as I did the math. With our current situation, I felt Option A would not be feasible for me. It’s just too costly.

As FOMO set in (Fear Of Missing Out on a treatment that might be THE treatment to finally cure me), I reluctantly asked for an option B.

This option is to add yet another antibiotic to my already rigorous treatment. In this case, it would be the broad spectrum antibiotic, Clindamycin.

The pros of this treatment are:

1) It’s cheap. In fact, I would pay nothing with my insurance.

2) In addition to treating the Prevotella Bivia in the bladder, it also targets the Lyme bacteria in the nervous system.

The cons are:

1) Since this antibiotic kills bacteria from such a broad spectrum and I am already on an aggressive antibiotic protocol, it could increase my risk of developing candida overgrowth or worse, a potentially life threatening GI infection called C-Diff.

2) I need to take this antibiotic three times per day, making it difficult to schedule it around all my other medications.

3) It’s also hard on the digestive tract.

4) Because this antibiotic has penetration into the nervous system for the Lyme bacteria, there is a high likelihood of experiencing an increase in my neurological symptoms as the new antibiotic kills those bacteria.

Truthfully, I  really didn’t like either of the options. Neither annihilating my gut nor going in debt seem like great solutions. In the end, I chose the only affordable route for me. I added the fourth oral antibiotic to my treatment for the next 10 days. Following completion of this antibiotic, I will re-test with Pathogenius to see if there are additional infections.

During this course of treatment, I have significantly upped my intake of probiotics and digestive enzymes to help protect my gut and decrease the risk of C-Diff and Candida overgrowth. As predicted, I am noticing an increase in my neurological symptoms and worsening insomnia has been the most difficult symptom to endure. Luckily, I am already on day 6 of my 10 day plan.

I am hoping this new treatment will shed light on potential causes of Interstitial Cystitis in some people and yield improvements in my symptoms.

I will post an update after I have completed this course of treatment.

Bump in the Road

24 thoughts on “A Bump In The Road: Dealing With An Interstitial Cystitis Flare

  1. Sorry to hear about your flare up, and that neither of the options were very appealing. I hope you’re doing well after having taken the oral antibiotic. I was under the impression that Interstitial Cystitis is common with Lyme. (?) I was wondering if D-Mannose powder would be of any help. I do not typically get bladder infections, but I have used this for times when my bladder has been irritated and it has helped. I know it at least prevents E coli bacteria from attaching to the wall of the bladder, maybe it could help that particular one you tested positive for as well. (?)
    Anyway, I do hope you feel better soon.
    Annmarie

    • Thanks for the comment Annmarie! :) It does seem like Lyme and IC are an increasingly common combo. I have used D-Mannose in the past, but not recently. Unfortunately, I never found it to be helpful when the infections are something other than E coli. Thankfully, I survived the addition of the Clindamycin and am hoping it keeps things at bay. I am waiting just a bit longer before I write an update just to make sure. Hope you are doing well! xoxo

  2. Wow, Jenny, I’ve been considering some of these options too and it’s very challenging when it’s all so expensive! I don’t know if this would be of interest to you or not, but one thing that’s helped me is to use Kinesiology to help make decisions about which treatments will be most beneficial to me. I saw this suggestion on the ICA website in one of their “Voices of Hope” blog posts, 6/11/12 “The Brightness of Healing.” I like to read about people who fully heal and how they did it, and this is one of those cases. After I read that, it took me awhile to find a practitioner who was really good at Kinesiology, but I finally did — and am also working on learning it myself. I don’t know if this would be a helpful route for you, but wanted to mention it just in case! Another time I can share with you the decisions that I’ve made and the results that I end up with, but I’m still in the middle of it all right now. Sending you heart-felt hugs and support through cyberspace! K.G.

    • I so much appreciate your support Katherine! It’s pretty overwhelming sometimes, isn’t it. I am familiar with Kinesiology, but I have not looked into any practitioners in the area. I have a few friends elsewhere that feel it has been very beneficial to them. I will do some research on it. Thanks for the tip. The Clindamycin has, for the moment, seemed to improve things. Hopefully, it will stay that way! Hugs to you too!

  3. Hi Jenny, So sorry for this set back but your incredible strength will get you through. My younger daughter (Lisa Wren) has a weakened immune system and has been strengthening and learning about it for awhile. She uses a lot of essential oils and non-toxic products. If you are interested in anything she is on Facebook (This is Living) and she is a rep for doterra essential oils, Ava Anderson non-toxic and Wildtree. I wish you luck and I will continue to pray for your success in beating this disease.

  4. ALWAYS a pleasure to hear from you Mary Ann!! I am so sorry to hear about Lisa. It’s so difficult to be young and struggling with health issues (well, any age really). I am always interested in supplemental ways to strengthen my body. I am a long time fan of essential oils and although I have not found them to be a cure, I do find they help take the edge off some of my symptoms- which is so helpful! I haven’t heard of Ava Anderson and am not very familiar with Wildtree so I will certainly check into those things. Thanks for thinking of me!! Love to you!

  5. Glad to see your NP is using Pathogenius Labs. I think you are referring to Ruth Kriz – great lady and just spoke with her a couple of years ago about using this lab. My mother introduced me to this testing a couple of years ago through the Wound Care Clinic she works with in Clearwater, Florida affiliated with Dr. Wolcott who created the Patholgenius Lab with a med partner in Lubbock, Texas. They do both bladder and vaginal cultures, plus more. I found through calling them directly you can order a test kit and then take to your local doc who can sign off on the testing and get the results for you – however like with Ruth, it’s best to have someone who is bacteria literate to know how to read the results. I have found that either a knowledgeable Urologist AND Gyno are necessary sometimes.

    In my opinion, this type of testing is beyond cutting edge and I personally have walked the lab kits into the local doctor’s offices here in Atlanta to introduce them to this type of testing. Some listen, some don’t as it’s a spin culture rather than a growth culture and vastly more sensitive to the minute levels of bacteria that no other testing will pick up on in the average lab. Again though it requires antibiotic therapy as suggested in the results but for how long and how much it will require to bring levels down to “normal” is probably on an individual case by case basis.

    I too tested rather high with Prevatella Bivia and a few other vaginal bacterias that were found in my bladder and creating wicked painful flare ups with IC. However, my urologist was clueless as to what it was when I showed him the Pathogeniums results – however the gynecologist definitely identified it as somewhat a normal bacteria in the vaginal area that was found in the bladder, plus I got another opinion from a more savvy Urologist out of Emory Hospital.

    The key I have been reading on is that yes, these bacterias are normal to some level but if the body has some issues with keeping them under control, it can grow to a level causing massive pain vaginally and in the bladder. Right now I am considering Ozone Therapy instills of the bladder which I found through research on line from a doctor who introduced it out of Las Vegas, Dr. Shallenberger.

    We consulted on the phone and found that there is a local practice in Atlanta that utilizes it as well – Progressive Medical. They have been extremely successful in treating the pain and with the ozone, wiping out the bacteria in the bladder that can’t co-exist with the ozone. Sometimes you will need some maintenance treatments after the initial treatment, Dr. Shallenberger explained, but that’s better than this type of pain that is full tilt and trying everything orally for drugs rather than going straight to the bladder. He explains even if you identify the bug, it still can be a nebulous journey for some to treat and get under control. Ozone will do the trick he explains.

    Hopefully in the next week or two I plan on giving it a 10 treatment trial and see how it works. They quoted me a great deal higher in Vegas for the full meal deal, but Atlanta was a treatment by treatment quote at around $60 an instill.

    Also I have found a profoundly interesting connection from medical communities on line – with journal linking IC and bladder issues to trauma with one’s life and history – sexual abuse, any abuse for that matter, other life events, etc.

    From there I discovered a tremendous book called “Be In Health – A More Excellent Way” – and personally met the author and attended a seminar who teaches on healing of the body out of Thomaston, Georgia. AMAZING tools he uses for healing!

    Dr. Wright also includes info in his writing on IC, Prostatitis, Auto Immune, and a host of other diseases root CAUSES, even if by a germinated bug bite, and more, from soup to nuts. I HIGHLY recommend getting the book and other material he has written. I was not sure at first about it until I gave it a long look and met the man, plus talked to others that have been through his seminars on the subject of root causes of diseases. He will flat take the mystery out of why and how and works well past disease “maintenance” and goes deep into how to completely heal. There are countless testimonials of healing – from even the most terminal cases of cancer all the way to IC – GONE and healed. The website http://www.beinhealth.com is the place to start and the book can be ordered off of Amazon.com too. He is tremendous at aiding the medical community in finding cures for diseases.

    Hope some of this helps who ever is reading this as you are not alone and there is HUGE hope and CURES for IC and other maladies. I am right in the middle of Dr. Wright’s program and have already made some progress – it’s been absolutely life changing.

    I will stay in touch and perhaps on the other side of IC will have quite a story to tell!

    • Thank you so much for taking the time to write such a detailed and informative comment ReAnn. I sincerely appreciate the resources you listed. God bless you on your healing journey!

    • did you not heal working with [the nurse practioner]? I am just starting to work with her and looking for success stories.

      • I am still working that specific nurse practitioner. It’s been a little less than two years. I am still a work in progress, but I have seen some positive changes. Good luck!

  6. I am also working with her an did the same test though they found a staff resistant strain in me. I am doing the bladder instills. Its expensive I am on day 2 of it. I also tested positive for tick borne infections. Ugh. I hope I can get well again.

  7. I just started seeing “RK” I’ve had terrible IC for three years…hoping she can get the Lyme/brucella/rmsf under control and eventually get to helping my bladder.

  8. Hi I also just found this thread. I just hung up the phone with the office of RK. Would also love to hear some success stories because what I’ve read is so mixed.
    I have a appt. with someone in Connecticut Friday
    Just so confused on who to go to anymore and so going broke trying to find someone.

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