request to infection disease doc for antibiotic therapy

[yorkiemom]

Today I went to an infectious disease specialist to beg for a broth culture as a prelude to my request for long-term antibiotic therapy. The doc said that my cultures don't look typical for long-term antibiotic therapy--most of them don't meet the standard of 100,000 somethings in the urine and they have a mixture of bacteria that look like contamination. This means that my urine is being contaminated from the inside or the outside, he said. Inside would be from e.g., leakage of stool into my bladder which can be ruled out because a urologist would have found it by now. Outside contamination means my urine catches aren't "clean," even though I always follow the instructions for wiping. He wants me to come in for a cath the next time I have a UTI and he will do a broth culture, but still thinks I'm not a candidate. Plus I'm allergic to sulpha and doxycycline, the drugs of choice for treating long term UTI's.

My problems started in Nov. 1990 with a hemorrhagic bladder. This doc said that you just don't get a hemorrhagic bladder--usually there is a toxic blast, such as chemotherapy or some other kind of ingested chemical. Only thing I can think of is I was treated with sulpha drugs in July 1989 and Doxycycline within the same year. Could this be the cause? Would their be residuals within my body? Can anything be done to overcome it now?

So now I'm doing what comes naturally . . . crying. Because I don't know what to do or where to go next for help. Can't tolerate pain meds of any kind; pain is horrific. Can't tolerate instills. InterStim isn't helping at all. Bombed out on Elmiron twice. Have used every alternative therapy I can think of. 6 months of internal pelvic floor therapy. I think I'm lost right now . . .

[Martha13]

Hi,

I am sending you a PM in order to explain another viewpoint on the subject of infection and the findings of a broth culture. I think it would help you immensely to have one done.

Martha F

[icnmgrjill]

Hi Yorkie...

Wow. Hemorrhagic cystitis is a pretty unusual beginning. What did they think caused that back then??? In any case, Martha is an excellent spokesperson for understanding the broth culture approach. My question is... what did they find during your pelvic floor physical therapy??? Did you have any progress at all with that???

Jill

[yorkiemom]

I drove 100 miles 2 x week for 6 months for internal pelvic floor physical therapy; got no relief. This was in 1997. I'd like to try IPF phy. therapy again because I think the therapists have learned so much more since then, but the pelvic floor reconstruction specialist (the one who would make the referral) says he can't find any trigger points and therefore, thinks it would be another waste of time & money. As I said in another post, he thinks my problem is all bladder, not spasmed pelvic muscles.

As for what caused the hemorrhagic bladder in the beginning, I really haven't got a clue. My family doc and the ER doc just said I had a bladder infection. Problem is, they both gave me the lowest dose macrodantin possible, which didn't touch the infection. I took 3-4 rounds of it with no relief; they wouldn't give me anything else, even though I cried and begged. And the pain has never gone away. I went to Mayo in 2001; they told me that it is very hard to recover from a hemorrhagic bladder. "Once you wake up those nerves, it's very hard to find a way to soothe them."

Sounds like I need to do the broth culture on my own as the next step . . . thanks so much, everyone, for listening and responding!

[icnmgrjill]

So, what they're saying then is that the untreated infection caused major nerve problems.

Just remember that antibiotics will do nothing for a nerve problem and that there is a substantial risk of developing even more severe resistent infections if you're on antibiotics for a long period of time.

If you're testing positive for infection (i.e. that they identify the pathogen) and they do antibiotic sensitivity testing to verify that that drug will kill that infection, then it makes more sense.

But, if you're culturing negative... then it doesn't make sense at all.

Good luck...

Jill :)

[MarthaF]

Yorkie,

It is very important that they identify the bacteria if they found an infection. And also important that they do a sensitivity test. They should be willing to show you those results. It is possible that the bacteria is sensitive to more than one drug. According to the PDR which gives information on drug usage, Macrodantin may be prescribed at the level of 100 mg 3 or 4 times per day to eradicate an infection. You could look it up yourself by finding a copy at your library or pharmacy. Many times we have to do our own research on drugs if we do not respond on the dosage prescribed.

While pelvic floor therapy can be very helpful it cannot, by itself, get rid of an infection. Please try to have a broth culture and sensitivity test performed.

Martha

[yorkiemom]

Thanks, Martha & Jill. I'm calling a lab out East Monday for a broth culture. I get an extremely painful UTI about every other month--the kind that ends me up in Prompt Care or a couple of times, the ER. Also, it sometimes takes more than one round of antibiotics (Cipro) to get rid of it. I get tested at least monthly by my family doc for a UTI because I have the symptoms and think I have a UTI when in fact, I don't. (the receptionist knows me by name now). It always feels like I have a UTI building in my body until wham! sure enough, I have one.

At least with the broth culture I can rule infection in or out. Will keep you posted!

[icnmgrjill]

Just to clarify - I never suggested that pelvic floor work is an appropriate therapy for an infection. If you test positive for a UTI, the only approach is the use of antibiotics. If you don't test positive, then we would look for other conditions that can provoke similar pain, such as pelvic floor dysfunction, IC, etc.

Let us know what they find.

Jill :)

[yorkiemom]

Just got my broth culture results today from a lab out East--I tested positive for Proteus Mirabilis and Strep Group D. I have a call in to the infectious disease physician, but he's out for 8 days. Wonder if he will say that somehow the results are contaminated because the specimen wasn't obtained through a cath? And while I'm not sure what I'm looking at in the lab report, it looks like the antibiotics used to treat each bacteria are different. One thing is for sure--if my physician can't help me, I'll be checking back here for ideas. The last 2 uros that I saw said they don't believe in antibiotic therapy so I'm on my own in regards to this approach. It was my family physician who gave me the referral to the infectious disease guy, but he admits (family physician) that he knows nothing about long-term antibiotic therapy. Please wish me luck--I need some relief so badly.

[vm]

Wishing you the very BEST of luck. I sure hope you can get this under control. We are all pulling for you - keep us posted. :)

[yorkiemom]

Heard from infectious disease doc's office today--just as I feared. Because the urine sample wasn't obtained by a cath and because I don't have symptoms of a UTI (although as I explained, I have symptoms everyday, but not the kind when I have an actual UTI and have to go to ER or prompt care), he says the broth culture is the result of a "contaminated specimen" and means nothing. Seems significant to me that broth culture shows infection, whether or not it's from a cathed specimen. I am trying to figure out whether I should go ahead and get cathed and have another broth culture done or whether I should try to find a new doc somewhere--like a clinic out East that I know does antibiotic therapy. I'm worried that even if I wait until I have a UTI like the doc wants, he will prescribe only 1 round of antibiotics, just like my family physician and then I will have wasted all this time . . . again. The days turn into weeks, the weeks into months, the months into years, this dreaded disease goes on and on . . .

[ICNDonna]

Is your doctor willing to do a cathed specimen for culture? If the cathed specimen still shows bacteria, he might be more open to treatment.

Warm hugs,
Donna