New Uro says antibiotics before diagnosis?

[michelew003]

I had a positive diagnosis for I.C. 10 yrs. ago from a respected Uro specializing in I.C. I was on Elmiron for a couple of years and went into remission, feeling fine for years.

This summer I had a painful U.T.I. that recurred again in less than a month. After taking another course of antibiotics, tests showed negative for U.T.I. but typical I.C. symptoms persisted. (Major flare!) Since my family doctor has little knowledge of I.C. he referred me to a Uro (my previous one retired). After waiting 6 weeks to get in, I got to see the Nurse Practitioner (not the doctor, who had an emergency that day) who discussed my symptoms with me, then with the doctor. (I was glad I went in with a full-page typed list of history and symptoms.)

His advice is that I should take 3 months of Macrobid antibiotics and see if I improve before he begins testing to see if I have I.C. He thinks it's rare to suddenly flare up again after all these years, and since I don't have insurance, he doesn't want to do a bunch of costly tests.

Currently I am taking Elmiron (I got my family doctor to prescribe these $300/mo. pills) staying with the I.C. diet (if not, then major pain) and just started Cystoprotek.

I am just so confused. Should I insist on more tests or wait the 3 months to see if I improve? Why should I take antibiotics when they didn't even do a Urine Culture? Should I seek out another Urologist? I'd have to go to a bigger town an hour away, and pay another $300 office visit and probably wait another 6 weeks :-(

Any advice?

[GriffsMommy]

I was orginally diagnoised at my gyn's office by having a potassium sensitivity test. When the gyn's office was not willing to let me try some pretty standard oral meds I dediced to go to a uro on my own to get treatment. He was very nice but even though the gyn's office had already said I had IC he had me go through a bunch of tests to confirm that I really did. He did try to put me on Macrobid for 6 weeks but I only made it through about 4 weeks because the Macrobid gave me a yeast infection which flared up the IC. Even though he hadn't been able to get a positive urine culture he still wanted to make sure it wasn't bacterial in nature. I pretty much knew from the day he gave them to me that they weren't going to work but in order to have him work with me I had to try them. I guess I would ask if you would have to wait the full three months to go onto other things if it was obvious that you weren't feeling any better. It's so much harder when you don't have insurance.

[pingpong]

Could you get your records from the uro who originally diagnosed you? I hate it when antibiotics are prescribed inappropriately - no wonder there are so many problems with antibiotic resistance! Avoid them if you can.

[futurehope]

I was having IC symptoms off and on for years, diagnosed with a cysto/hydrodistention in 2003. I had been in remission for years, then in 2006, contracted a UTI which brought my IC back in full force since.

So to answer the comment...
"He thinks it's rare to suddenly flare up again after all these years, and since I don't have insurance, he doesn't want to do a bunch of costly tests."

It happened to me. I flared up again after years, and (one of) my IC uros did not think that so unusual. He said some people can go for years without flares. I did. They do not even understand IC enough. How can they think that flares and remissions are unusual?

[Romans8:28]

It is very important for you all to understand that current cultures and dipsticks are not 100% accurate, you can only find what you are looking for.
Also they do not show low level infections. At my URO's office it is standard procedure to treat all chronic bladder pain patients as chronic infection patients, untill they have ruled out all infection issues. Then you are treated for IC. My doctor believes many IC patients are acctually misdiagnoised chronic infection patients and he has had quite a few get completely well!

It is important to rule out all infection issue before labeling someone with an incurable disease. For me the diagnosisi process was very hard. I have both chronic Kidney infection and IC, howver the more I have studied the more thankful I am for my doctor.

Truthfully he sounds like a good doctor. Try the antibiotics. If you see no improvement or get worse let him know, but you need to at least give it a chance. And don''t be surprised that if the Macrobid doesn't work they want you to try another one. Believe me I fought in the beginning over the antibiotic issue, but have seen my error! If you do not respond to the antibiotics I am sure he will help you with IC treatments!

Hang in there!!

Shelly

[Cricketmk3]

It sounds like your family dr is as informed about IC as your uro...he's certainly being more cooperative. (I'm in a flare right now after being symptom free for years.) I do understand not wanting to drive an hour when in such pain but it may be the only alternative if you want to see a dr experienced with IC. I'm with pingpong...can't you get your records from before? Why go through tests to diagnose IC when you've already been diagnosed? (I know how drs are though.)

[Romans8:28]

Michele, again look at the fact that the symptoms returned after a painful infection. Truthfully we know that the weakened bladder lining is more vunerable to bacteria and that a UTI can send our IC into a flare. I know from personal experience that a low level chronic infection can keep your IC flared up too. Keep this in mind, and even though I see no need for a new diagnosis, I have learned also that doctors often say whatever just to convince you that you need to do what they are asking.., It has taken me a very very long time on antibiotics to FINALLY have my IC under control and responding to IC treatments!! The antibiotics did not and do not cure my IC, they do however keep the infection in check and therefore allows my bladder to respond to the instills, meds etc, When the chronic infection comes back, even though it does not show by standard culturing methods, (I have however proven to those around me through a lot of culturing research on my own and cultures along with my hospital that I have this very resistant bacteria in there), my IC is bad and does not respond to treatments.

Again, yes get your record every one should maitain I copy of all your test and general records, but it is very important to at least try the antibiotics....,
honestly for me Macrobid was one of the few antibiotics I found soothing to my bladder..., unfortunately it was not strong enough to knock out the mega resistant infection living in my stones!

I do hope you will please consider what I am saying..., for your own sake.
At least give this doctor a chance!

Shelly

[leelee88]

I had a positive diagnosis for I.C. 10 yrs. ago from a respected Uro specializing in I.C. I was on Elmiron for a couple of years and went into remission, feeling fine for years.




You already had a postive Dx once. IC is an incurable disease that does have it's remission periods but again like I said it was never cured in the first place. So, if you were already Dx with it once then that would mean you still have it, if all your symptoms are back. I really think you need to find a new Dr.
10 years of remission that is wonderful, I am so sorry you are having to deal with it again..

[michelew003]

Thanks to everyone here who have all been so supportive!

I spoke with the doctor yesterday (he phoned me) and I agreed to try the 3 months of Macrobid, take Atarax antihistamine and also wait and see how the Urine Culture comes back from the local lab. I have also read with interest about the Broth Culture from United Medical lab.

The thing that has helped me the best so far is the Atarax - it is like heaven to get 4 hours of sleep at a time! It has changed my whole outlook. I feel my flare has calmed down a bit.

I am considering dropping the Elmiron prescription at $300 a bottle and just doing the Cystoprotek & Aloe, along with the Macrobid & Atarax. (My new Uro had no opinion either way about sticking with Elmiron; says it's up to me.)

I am also staying on the I.C. diet, taking CystoProtek, Aloe Vera pills, and seeing a wholistic therapist. She has a Masters degree in biology and helps me with diet & nutrition, also Cranial Sacral therapy, IonClense detoxing, and emotional therapy. She says it's vitally important to take probiotics when taking antibiotics to reduce the risk of yeast problems. She says all these various ways of healing will eventually reach a "tipping point" where the healing will fall into place and my body will be much healthier. I beat it once before, I can do it again!

Anyone interested in the above please message me! It helps me stay positive.

-Michele

[Romans8:28]

Michele,
Your plan sounds very good. If you are dropping the Elmiron only because of cost, they may have a patient assitance program. I have had a lot of success with using aloe. I never took Elmiron, just don't want money to be the only reason.

If you decide to go with the broth culture, it is very important to have a clean catherized urine collection. since in a broth all low level bacteria grow unfortuntely even contaminates. Broth cultures do help and are great but to get a clear picture, this is the best way and collection is sooo important!

Keep us posted how you are doing!

Shelly

[ICNDonna]

I hope your pain you have now will ease soon. I know antibiotics have some anti-inflammatory qualities, which helps us feel better while they help rid our bodies of infection. I have already developed allergies to pennicillin and sulfa so I always ask for a culture if it's pretty clear that I have infection. This only happened to me once and the culture and sensitivity test confirmed that I was on the appropriate antibiotic.

Donna

[michelew003]

I got the news that my urine culture came back negative. (This was a standard culture, not broth.) I am still experiencing symptoms, but this doctor says he wants me to wait the full 3 months on antibiotics before he'll even consider testing me to see if I have I.C.

It bugs me that he says he "doubts" my initial diagnosis, because I had a really great doctor back then. I don't agree with him that remissions are rare.

Also, it bugs me that he more or less said the fact that I am uninsured causes his reluctance to treat me for I.C. He also won't even fill out the forms to see I qualify for prescription assistance, because he's unsure if I have I.C., but he won't test for it either! At least, not until after the 3 months on antibiotics are up and then he'll consider it. I'm going to stay on the Macrobid, but I decided to get a second opinion.

I called up Urology Assoc. of Indianapolis and got an appt. with Dr. Beam. I have heard great things about her, and the best is that they offer a 30% discount to the uninsured, something that my current doctors here in Richmond, Indiana do not do. My appt. will be in about 6 weeks. I feel better seeing a woman doctor who is experienced with I.C. patients!

-Michele

[Claredale]

I would be careful with taking antibiotics that you really don't need. Our bodies do get resistant if we take them too much. I have only had 1 UTI and that was after a DMSO treatment.