I am trying Macrobid...I want it to be a UTI and not IC so badly...

[massagedoula]

Right now I am trying something strange. I am taking Macrobid and acting like it is a normal UTI. Even though nothing shows on my cultures, I still have lots of WBCs and a hisory of UTIs so I am just grasping on the hope that maybe it was a UTI that no-one picked up...I had to go back to the bad Uro today to ask for an antibiotic to test out my theory. I called and asked to speak to him (that is what I thought you were supposed to do) and he YELLED at me, said "dont ask to speak to me except in an emergency...and this is NOT an emergency" That is why I need to get another Uro. So, I just went into the office and he has 1 nice and 1 nasty nurse. First nasty nurse came out and said "Oh, its you. Go give a sample to be cutured and then we will try to fit you in but you came w/o an appt. so you will have to wait." Then nice nurse came out and brought me in, told me that the Uro had put me on a refillable perscription for antibiotics (Macrobid) and that I can take them whenever I want. It is like they just want me to treat myself and they dont care...but that is Ok, I will go to another Uro on 4/20. So I am taking my first dose of Macrobid, then I will call them on Friday to find the results of the urinalysis. I really feel that if they cultured it for more than 2 days and really looked for other bacteria than the normal ones, then they would find an infection...so I am treatng myself like I have one. I know that it is not a good thing to take Antibiotics, but since IC is a disease where you have to rule out everything else, then ruling out a UTI makes sense, right? I think that when I call the Uro's office on Friday to find out the urine culture results I will ask to try Ditropan, I will ask for the lowest dose first. The Uro did mention it to me at the first visit, actually, he said that he had free samples I could try...so I will bring that up to the nurse. I actually have some Ditropan in my medicine cabinet from the very well meaning gyno that was so convinced that I had IC that she wrote me a perscription for everything...Elmiron, Detrol, Ditropan...I only tried that one Detrol and threw up so I never tried anything else that they gave me

It feels like all these doctors are just letting me handle every decision, and that they just dont know what to do with me! I dont want that, I want a DR to really have a strong feeling abou the treatment they think I should try, rather than leaving it up to me to do trial and error.

[ICLori]

I'm sorry you are going through this with doctors. I find that doctors often don't know really what to do. The problem is, there's no cure for this disease, and no one treatment works for everyone. And we IC patients have a reputation for being difficult patients, time-consuming, etc. Because we keep trying this and that and nothing ever really works, LOL. If they had a pill they could give all of us that really WORKED on all of us we'd be easy patients. But when nothing works - you keep going back and asking for something else.

I think it's a good idea to try what you are doing. I tried Amoxicillin and Doxycycline for awhile. It really did seem to help me at first but then the IC came back. Not sure if the germs just got antibiotic resistant or what. I just don't know.

There are labs around that will do long-term broth cultures for you - Martha F. is a ver nice lady on here you can page and ask about this, she knows a lot about it.

Blessings, and good luck!

Lori

[Katrina]

How crule to yell at you. You are the one suffering...he is the one supposed to keep his cool. :grouphug:

[TinaDean]

I am so glad that you decided to get another urologist. I am so-so about the one I have now, but he is up on the latest with IC and his staff are friendly. His bedside manner leaves a lot to be desired, however. I am always on the fence whenever I have an appointment with him. Since he is the one who diagnosed me, I am hesitant to find a new uro. I took macrobid for 6 months back in 1997, when I was having IC symptoms, no bacteria as well. The uro I went to back then told me I had chronic cystitis.......he is the same uro who misdiagnosed me last year and said I did not have IC. The new, and so-so uro, did diagnose me. I guess that point I am trying to make by rambling....LOL, is that you are doing the right thing for you, and that's all that matters, because as my uro likes to say..." What is good for one IC bladder is not good for another". :O) Keep your chin up, better days are ahead.

<3tina

[massagedoula]

Last night was hellish. About 4 hours after I took the Macrobid I felt nauseous. I Tried to sleep and then the pain in my bladder was so bad that I couldnt, then I started vomiting and couldn't stop. I haven't slept in 48 hours and I am a mess. I think that I had a bad reaction to the Macrobid and I called the Urologist's office this morning to tell them that I was going to stop it. I was also worried because I didn't want to stop the Macrobid and get a "superstrain" of bacteria. So I told the nurse who answered the phone. She said "well, you weren't supposed to take it anyway until we told you what your culture results were." I was floored. They specifically told me the opposite, and actually gave me a printout explaining the protocol of taking it...not to mention that I think that I recognized the nurses's voice and she was the one who had explained it to me! So I told her that and she said "Well, if we told you to take it then you shouldn't have stopped it." I told her that I vomited for 6 hours last night, and my bladder hurt extra badly. She told me that it couldn't have been from the Macrobid. At that time I just said "OK" and left it at that. I asked her if it would hurt me to have taken that one dose then stopped. She gave me no answer, just said that she will write in my chart "patient stopped antibiotics w/o authorization" or something.

So I stopped. Please, tell me, is it going to hurt me even more that I took that one pill then stopped? I don't want to get a superinfection.

I really thought about dying today. Not that I would ever do anything to harm myself, but I have been in extreme pain for 5 weeks now, with no way to get better, no diagnosis, and nothing to look forward to.

I called the other Urologist's office (the one with the woman uro) which I am scheduled to see on 4/20 and I begged and pleaded for an earlier appt. The I started crying, I couldnt help it. I just needed to have someone acknowledge the pain that I am in. And not tell me that it would '"go away by itself" like my uro told me, and wrote in my patient notes...(which I got to look at w/o him knowing...long story) The receptionist put me in for Monday morning at 8am. She seemed genuinely concerned about my pain, which I think forbodes well for this new office, I hope.

It is now going on the 3rd night of this intense super pain. I just took 1/2 a Vicoden. I can't go 72 hours without sleep. I really am scared.

A previous urine culure came back today, and the ND told me that it showed "various gram postitive bacteria--none in large quantities or more abundant than the others, so the lab didn't consider it an infection and didn't do a sensititvity test on it. The naturopath asked me what I wanted to do, did I want more antibiotics or not? She means so well, but she doesnt have much idea what she is dealing with, and neither do I. I told her that I would wait to make a decision because I just was so sick from the Macrobid, that I didnt want to experiment again.

[kadi]

Hi there,
Just sending a cyber hug. I'm so sorry the doctor's office treated you badly. I never would have believed how people in the medical profession could behave til I got IC. I've experienced similar unpleasant episodes. I wish I had something really smart & helpful to say. Just really glad your new office was helpful on the phone and am really glad you got that appt moved up. If necessary, go to the ER, okay? They can test your urine for infection and can give you a different antibiotic if you can't tolerate the Macrobid. (I can tell you I'm very very sensitive to meds & frequently am allergic to or intolerant to most of the meds I've tried, so I totally understand where you're coming from.) If you have an infection, it needs to be treated, and 4 days is a long time to wait when you're sick...

Hoping you feel better soon.

[twiggy]

I've swallowed hundreds of antibiotics--unfortunately--as I am very prone to infections. Macrobid is the one I have consumed the most. Did you take it with food? You need to do that otherwise it can upset your stomach. It can also discolor your urine and feces. It makes me very naseous if I don't take it with food. I just finished a month of it again, but it didn't do a darn thing. It may have killed the infection but the pain persists. It takes a long time for an IC bladder to settle down, in my opinion, after an infection. (As well, from what I have read, macrobid reacts/works better with food!)

Some uro's, such as my last uro, will instruct patients to take an antibiotic as soon as they feel a UTI coming on. This way, the patient doesn't suffer for the 48 hours that the culture is being done and the UTI doesn't get a chance to progress.

As a result of past experiences, I refuse to take antibiotics unless a culture has been completed. There is just no way for me to tell if it is a UTI or IC.

You should ask that your uro order a "broth culture." I have done this before when I suspected that a normal lab test wasn't catching the bacteria.

Don't despair -- you will get help but sometimes it just takes a heck of a long time! It took me two years before I got relief with elavil.


Hope you feel better soon!

[Joyaur]

Macrobid just made me FLARE...no help at all

[ICLori]

Alot of people find that one antibiotic or another makes them flare. Some people are okay with one antibiotic, while others flare on that same antibiotic. But lots of people do have problems with antibiotics. I have to take Doxycycline for my ocular rosacea and it irritates my bladder, even though I take it with food and everything, my bladder still just doesn't like it.

I'm sorry you are having to deal with these jerks - there are good doctors out there but sometimes you have to go through some bad ones before you find the good ones.

Blessings, Lori

[Katrina]

My thoughts are try a different antibiotic....maybe a different doc too. I am so sorry you had that stressful, non sympothetic or understanding conversation with that nurse. Sometimes it sounds a lot like an office is trying to protect itself more than it is trying to help us. Sending you some Cyber love :kiss: things will be ok! :grouphug:

[Romans8:28]

I am glad you are to get into a new dr quickly! Hope they are more kind!!! I can take Macrobid without a problem and find it really helps when I have infection! Cipro hurts, makes me burn so bad, Levaquin makes me sick, hurt and everything taste like metal!!
We all just respond differently! I do have to take the Macrobid with food!

I am thankful for a good URO have suffered through many doctors before! Just saw my general practioner on Fri in town. As soon as he saw me he looked away and acted like he didn't see me! It was very obvious and hurt a lot. No one can understand the pain of IC till they have it!! :rolleyes:

My URO does allow me to doing a lot of treating myself though.., it is good and bad! I also have an open antibiotic perscription but bought the urine dip sticks myself that test for everything. I found infecton shows up more at home at the end of the day etc. At least I can kinda watch it! My DR was leaving to go out of town this week and was booked solid.., The test strips showed my increased burning was infection and was able to treat it without having to wait to get in!

Pray you feel better soon!! I am sorry you are hurting!!! :grouphug:

[Katrina]

We are all so different!

[Debgail]

:grouphug: :grouphug: ((((((( Massagedoula)))))) I am so sorry to see you going thru all this..bless your heart...you ARE going to get to the root of this I am sure! Just wanted to let you know I care and have been reading your posts..if I can ever do anything feel free to email me :)))

OH BTW Many time I have gone in to the uros/Dr office and showed elavated white count and have not taken antibiotics for it. My uro and Dr said that because of the inflamation in the bladder icers will throw off white cells. He said if i have a fever feel achey etc to come back in. Most of time it resolved as my flare/inflamation got under control. It always seems to happen for me during a flare and also at the same time huge vaginal swelling from the bladder.

I dont know if any of this applies to you, just thought I would tell you.Also I have taken Macro bid many times and the only time I have had nausea was if I hadnt eaten with it. It works very well on utis. Also wanted to tell you....when I have had the high white count and had my urine cultured most times nothing grew....which leads me to back to the inflamation theory my uro says happens...Who knows if its right...just thought I would tell you
Love Debbie

[massagedoula]

Thank you so much Debigail...This was an old post for me but I still check it. I still am pretty much the same...but I go for an in office cysto and urodynamics test on Wed. (SCARED)

[Katrina]

(((((Massagedoula)))))) Good luck with your appointment and test on Wed. Sending some prayers and love your way!! :grouphug::kiss:

[charmedx3]

Hope you are doing better. I just started the macrobid, no sign of infection but dr wanted me on it. I have not been diagnosed w/ic but waitingit out. I did notice w/macrobid i would get a headache the 1st few hours for the 1st 3-4 days otherwise all good. Just a thought sometimes you can get more info from a pharmacist. where i work i have a pharmacy right next to me so i have been asking them alot of questions, even on the samples the dr has given me. Good luck!

[ICAmy]

Hi massagedoula,
I know how you feel! I am super sensitive to Macrobid and Septra. Many years ago before they figured out what was wrong with me I was on the macrobid for over a year. After that anytime I have tried it agian I throw up all night. I started Elavil last friday (4days ago) and I can't believe how much better I feel!!!! Have you tried it?? You know how it feels when you take the vicodin? A bit high and it only takes the sharpness of the pain away? The elavil actually almost erases the pain. I did feel a bit strange the first two days but I'd rather have that than extreme pain.

Also, have you seen the uro from UW yet? When you find a good one in WA please let me know because I am so tired of my drs just letting me try whatever and as you explained it feels like you are treating yourself instead of them providing you with good info. Then together you can decide what is best for you. This whole thing is crazy! So, let me know if you find someone great. I'm up in Bellingham and would be willing to drive to seattle if I needed to.

Amy

[massagedoula]

I have seen many doctors...but the best one so far, has been the ARNP at the UW urogynecology, Jean Kalhoff. I have heard good things about Dr. Jane Miler there too, but I was unable to get an appt with Dr. Miller, and I have been seeing Jean Kalhoff. You should try the UW. I called by myself and they could not make an appt for a self-referral, but I got my gyno to write a referral and then they called me back in about a week and made the appt. You should call about 2-3 months before you want to go, as they are very booked up. I also have been having good luck with a Naturopathic Doctor, Physical Therapist, Chiropracter, and Massage Therapist, but they are all here in Olympia. The UW has a list of Physical Therapists they will give you.

[ICAmy]

What do they do at physical therapy? Haven't tried it yet. I think I'll talk to my family dr today about UW. She would have no problem refering me....she doen't know what to do with me anyway. I just take stuff I've learned myself into her and she lets me try some of the stuff and steers me away from others. I've been seeing my naturopath for a few years now. She helped treat my IBS (systemic candida in her opinion) with Oil of Oregano. But hasn't been able to get a handle on the pain part of IC. I am going to try acupunture on the 18th to see if that does anything. I may even try the aloe soon to.

[massagedoula]

The physical therapist will do intra-vaginal releases of your pelvic floor muscles and may also do biofeedback. If you search on the boards with "phyical therapy" you will find many posts that explain it. I love it, but my insurance benefits are ending soon for it, so I have to stop it next month. She taught my husband how to do it to me, but I have not let him try yet....

[FaitherJack]

You must eat with those antibiotics they are strong and can take a few days to allow for your body to adjust. It is different for everyone, but STRESS is a hell of a thing on this matter, I have recently learnt I hold my pelvis area as tight a virgin on her 13th B-day, a little joke there, but it is true, I needed to RELAX my pelvic muscle and allow myself to relax when peeing and seriously, it works, and sometimes when I get stressed the first thing I have to do it PEEEEEEE, oh yes and NOW! So it is HARD, I understand I have two little ones and they drive me nuts sometimes, but, I try to relax, and AVOID HOT HOT BATHS, this is something that I can't do, I miss them so much, but can't do it! Take care, and I think you are very nervous about it all too, which doesn't help, I can totally RELATE! Honestly, GOD BLESS!

[jenjen05]

When all my bladder pain and frequency started last September, even with negative urine cultures, the first drug we tried was Macrobid. It did nothing for me.

I would advise you to talk more to your doctor about Macrobid. There have been studies that show that this drug does more harm than good. My doctor says its a drug you take maybe one or two times a year because it's mode of availability is through the liver and kidneys and can apparently do a real number on them IF you use it too often. But like I said, talk to your doctor about this drug some more and research it on the internet.

If I had been you I would have demanded they do a sensitivity on whatever was found in your urine. No matter how small of an amount of bacteria was there. I always demand sensitivities. Your last resort should be throwing random antibiotics at things to see if they work. One of my personal crusades is spreading awareness about antibiotic resistance. I urge you to read the link found in my signature for more information.

Best of luck to you. Don't lose hope and I hope you find the answer your looking for.

[SharonA]

This is a very old thread. Massagedoula began it in March of '05 and last posted to it on May 11, 2005. Right now, she is awaiting the birth of her baby and is doing very well IC wise.

I am going to close the thread.