Chronic UTIs

[TrulyTessa]

I am a 40ish year-old female who has a bone marrow transplant 12 years ago for Hodgkin's Lymphoma. I have been in remission ever since.

For the last 7 or 8 years, I have been getting UTIs roughly every 2-3 months. About 5 years ago I had a full workup, including a cystoscopy and a voiding cystourethrogram. Everything came back as normal. I suppose I'm technically immuno-compromised following the transplant, but I don't seem susceptible to any other chronic infections.

I take 3 prescriptions to address my body's reduced production of hormones: progesterone, an estrogen patch, and an estrogen vaginal suppository (with the latter one being used in a targeted way to try to keep the vaginal wall and urethra healthy, specifically in hopes of preventing UTIs).

I practice sensible hygiene and do everything I can possibly do to avoid these repeated infections (drink lots of water, void after intercourse, void fully in general, etc), but they keep coming back.

The last two infections have been positively identified as Streptococcus agalactiae Group B (i.e Strep B / Beta
Hemolytic Streptococci). I understand this is not the typical microorganism that causes UTIs for most women.

I'm wondering whether anyone has any creative ideas for how to prevent these recurring infections.

I have a couple of crazy thoughts of my own that I thought I'd toss out there, to see whether there is any practical evidence that they might work:

1. Could my husband be a carrier of Strep B, passing it back to me after I finish each course of antibiotics? If so, would it make sense for him to do a round of antibiotics simultaneously with me, in hopes of avoiding future infections.

2. Has anyone heard of using pentosan polysulfate sodium to treat people who experience recurring UTIs? I stumbled across the drug when it was prescribed for my cat's joint pain, and in reading up about it I noticed it can help build up the GAG layer in the bladder. Sounds like it might help?

I would greatly welcome any comments. I'm so tired of these infections and am at a loss for how to proceed. Many thanks.

[TrulyTessa]

UPDATE (& response to sleepytea)

My husband and I saw the doctor today, and he believes it's possible that we're passing Strep B back and forth. He mentioned that while it's a ubiquitous microbe (around 20% of the 'healthy' population carries it), it does seem to be more prevalent in sexually active individuals. So he figures it's worth a shot.

So, my darling husband will go on penicillin for 7 days, just as I'm about to come off my 7 day course. We must refrain from intercourse until he finishes the antibiotics. We'll see what happens after that. I'll report back in due course.

To sleepytea: Thank you for the suggestion. I do always take probiotics during rounds of antibiotic treatment. In particular, I'm careful to replenish after the course of antibiotics has ended. Even our veterinarian insisted that we give our cat probiotics after she had a round of antibiotics! This view has definitely become mainstream. I'm certain it was a less common view among medical practitioners even a decade ago. I know no one suggested that I worry about the "good" bacteria during my bone marrow transplant 12 years ago, a period when I was taking antibiotics for more than 3 months steadily. Thanks again!

[sleepytea]

I cannot speak directly concerning your issue, but a friend of mine was told to take probiotics  two hours after her antibiotics to help keep away "bad" bacteria in the GI.  She also drinks Keefer and has Greek Yogurt.  Its a constant cirlce of antibiotics and then probiotics, but perhaps this could help in some way?  Maybe check into asking your doctors if this is an option?

Good luck!

[TrulyTessa]

Thanks Ron, I appreciate your having shared your experience. You're right - it really affects the quality of life.

I'm curious: are you on antibiotics all the time? Some doctors have suggested this to me as a possibility. I know there are pros and cons... I think, for instance, over time the bacteria can become immune to the bacteria, so it may be best to use antibiotics intermittently to fend of the infections as they occur.

[rmprdl1964]

Hi, I too used to come down with UTI at about every 3 to 4 months requiring hospitalization. I have had both the Strep B as well as a staph infection.

While I had a staph infection in 2000 the infection spread into the left testicle and I ended up having an emergency orchiectomy to have the testicle removed.

In 1996 I was diagnosed as having a neurogenic bladder needing intermittant catheterization to ensure the emptying of the bladder.

Each time that I came down with an infection my wife and I abstained from sexual activity. I think that it is possible that your husband could reinfect you. The Strep virus most often does not pose a problem to a healthy individual. Since I have a condition of the nervous system I'm more suseptible to infections. I'm not quite sure as to how your husband should be treated to ensure that he does not pass the infection back.
For me it was easy as I had no sexual interest when I came down with an infection.
Prior to 2000 I only used to cath once a day. After the surgery in 2000 I made sure that I self cath. at least 3 times a day. I still have had some infections and on March 7, 2008 was hospitalized again. Between 2008 up to now I have had another 2 infecions but they cleared up using Cipro.

I hope that you will be able to get this under control. I know how it effects your quality of life.

All the best

Ron