I'm convinced I have a low grade recurrent infection!

[mela414]

I haven't been on in a while......not because my bladder is better but because so much else has been going on. I hope everyone is OK....or at least hanging in there as I am.
I recently had a UTI and was treated with antibiotics. I did not have a culture but am sure it was an infection as it had all the classic symptoms and came about a few days after intercourse which is a pretty common occurence for me. I did a 5 day course of Cipro which seemed to help but as soon as I stopped the pain, swelling, burning and pressure came back. I had been taking lots of probiotics all along and am still using vaginal Nystatin to keep the yeast at bay so I know it's not that. I called my uro's office and told her what was going on. I was also able to find some old culture and sensitivity reports and relayed the info to her as they were done by a previous urologist.
Anyway, it showed that at those particular times I had E. Coli infections that were resistant to a lot of antibiotics! Cipro was one of them and although I did not have a culture for this particular incident it seemed to make a lot of sense to me.
We then started me on a 7 day course of Ceftin which was something I was susceptible to in the past. We decided to take a chance on that. It quickly helped but at about 6 days I started to have stomach problems and could not finish the last day. Sure enough, 2 days later the pain and other symptoms returned. I had discussed going on prophylactic macrodantin with her last week and she agreed but wanted a cultrue and sensitivity. I decided to send it to United Medical. I did that yesterday and am waiting for the results.
Before I got diagnosed with IC and had chronic UTI's and my uro had me on prophylatic antibiotics nightly and 1 with intercourse. I don't remember how much it helped because there were periods that I did not take them. I was also younger and had longer periods of remission but
I also remember having really bad infections that I had a hard time finding the right antibiotic to treat. A few times I had to have antibiotics by injection because I had become resistant to so many antibiotics.
I am convinced that there is something brewing that I haven't been able to get under control. In the past, macrodantin has helped but this time around we went with different meds. I have been calling the uro for 2 days now and she has not called me back! This has been going on 3 weeks!
We discussed what has been going on 2 weeks in a row! We talked about taking a prophylactic. She told me to call her if things didn't clear up and I did but she has not called back. I think that is so unprofessional! Do these doctors know what it feels like to have an infection! How could they let someone stay in this pain? I had some more Ceftin and put myslelf on them again tonight! Something has got to give! I hate the idea of taking antibiotics and didn't take them for the longest time because they convinced me it was an IC flare which I am rethinking now. I think I keep getting infections that don't clear. I started with infections as a child and they continued throughout my life. I have lots of positive cultures but lots of negative ones too! The periods in my life when I was not sexually active the infections were considerably less. hmmmmmm. thinking out loud here. Not sure what to do as I am not getting anywhere with my dr this time.....actually it's the PA from the doctor's office that I have been speaking with. She's usually pretty good but when she's overwhelmed with work she doesn't call back for days.
I needed to vent..........and as usual I pray they find out how to treat difficult patients like us.

[ICNDonna]

I wish I had an answer for you. You might want to make an appointment to see your urologist.

Donna

[mela414]

Thanks Donna,

If she doesn't call back today. I will call to see the uro. Let's hoe they don't keep me waiting too long!
Meggie is a cutie!

[ICNDonna]

Thanks for appreciating our Meggie - she's a little lover. You also have a sweetie!


Donna

[MarthaF]

Mel,

I think I have corresponded with you before and I won't repeat all I wrote but please check some of my past posts. Many of us believe "IC" is really an undiagnosed infection but the right pathogens have not been found. United should find them. You could have e. coli plus....... They will find both and let you know which antibiotics are best. This is not a problem that requires only a 10 day or two week treatment. We have found that it will take months of the right antibiotic. We think the bacteria are intracellular (in the tissues) or in a biofilm, which means dug in and hard to detect and hard to treat. But they do respond if you use the right antibiotic for the right amount of time. And I advise using **** ****, NP, to guide you since she has treated 400 patients and knows her stuff. I would not continue to fool around with a PA. Even the IC experts do not believe/treat these chronic symptoms as a serious infection. Most labs do not find the real pathogen since they are hidden or grow in low numbers, but they can still be problematic.

Search for Femdophilus that I have posted about. It is a very good probiotic for urogenital health - was just mentioned in Prevention magazine in June.

Martha

[mela414]

Thank you Martha,
Yes we have corresponded before and you provided me with a lot of information. I have even saved a lot of the emails. I was a bit better for a while but then something will happen and the infection and pain will get really bad! I haven't been able to put my health concerns first because of my husband's illness but I really have to take care of myself now!
I've read about the femdophilus and don't think I can take it as I react to anything that has FOS. I am severely sensitive to and allergic to mold and FOS is fermented on citric acid and mold. I searched for a long time to find a probiotic that I can handle. I have found that I don't react to Custom Probiotics and take it daily. I up the dose when I feel I need to. I acutally had the yeast under control for while using that alone but now am back to using the Nystatin and probiotics.
Thanks for the update. I am waiting to hear form United Medical labs.
I also called the uro again today and told them how upset I was that the PA did not call me back in light of all that had been going on and especially since we had conversations on the phone about this twice recently. She said she would leave the message again and even took the pharmacy phone number. I have not yet heard from her today. I told the secretary that I thought it was so unprofessional. Especially when dealing with a patient who is in pain from a possible UTI. I asked the secretary if she would give me a courtesy call if the PA could not call me....just to let me know. I even went overboard and said ...."this way I'll know if I need to go to an ER'. So much for drama....no call back yet!
I hope you are doing OK. Are you having less bladder pain?

[MarthaF]

I don't know whether you were asking me if I had less bladder pain, but if you were referring to me I do not have any bladder pain - or symptoms. I attribute this to antibiotic therapy for bacterial infection.

I don't remember whether I asked you if you had been tested for Lyme disease? This is something that can cause bladder symptoms, and the body is apt to have other problems such as you report. Ruth would test for this. Not all labs are adequate to find Lyme - the best seems to be IgeneX in Calif. We tend to trust labs but they are not adequately testing for many pathogens - I could name many people who have found that out the hard way. If the United lab report shows some pathogens your local lab has not found I hope you will post this. I have sponsored research and the results were presented this week at the American Society of Microbiology meeting in Toronto. The testing used was by PCR which is a molecular test. Unfortunately this is not available yet for general testing but better testing is on the way. A new high tech test which has been under deveopment at UCLA was mentioned again this year at the American Urological Association meeting this week. They know that current testing is not adequate so are working on a better method. After 50 years it is about time!

Martha

[mela414]

Thanks for all the updates Martha.
Yes, as soon as I get my results from United I will post them.
Can you believe the doctor's office never called me back? I even made a point of telling the secretary that this is a long holiday weekend and I really need to be on an antibiotic!. How disappointing!
I have pain all the time but more pain and pressure and burning that is initiated after intercourse. Sometimes I get lucky and sometimes I don't. This is one of the unlucky times and it could last a while until I get an antibiotic to get it to subside. Another problem I encounter is my intolerance to meds. I get a lot of side effects often causing me to change meds midcourse or stop. I hope if I deal with Ruth she has some patience with this adn will work with me to help me find one that I can take.
With this incident I have found that I can tolerate Ceftin pretty well and even though I don't know yet if it is the right med for me.....it helped me for a bit while I was on it. Out of desparation, I took one last night and continued with it again today. My PA had discussed taking a nightly prophylatic dose so until I get someone to work with me on this...I took it upon myself to take them. I only have a handful left and was hoping I could speak to someone today but it was not to be. I have to do something to get this pain to subside!
I hope United will get me some results soon. I am so anxious to know what is going on!
How long were you on antibiotics? I seem to remember that you had to do several rounds to treat a few different bugs and that you were on them for months.

[mela414]

I just ordered the femdopholis on line. It cost about the same as the one that I already get and it doesn't have FOS so I thought I would give it a try. Let' see how it goes. I may also try using it vaginally.

[mich2604]

hi mela,

we have talked before too and i think we see the same uro office.


Martha mentioned lyme, i have lyme and i know ceftin is used for lyme often, so you might want to think about that too.

Im like you very very sensitive to a lot of meds, was never like this before I became ill and debilitated. So,i know how it is to find something and latch on to it, because it isnt often that we can tolerate meds.

Im sorry that the office didnt get back to you, its probably because with IC symptoms are so similar to infection that i think they dont take it seriously when we say we have UTI symptoms. Can you take pyridium at all? because the do sell it over the counter and it would help temporarily with symptoms its the stuff that turns the urine orange.

It will be interesting to see what united finds.

I had a culture done at lab corp recently, they noted that they saw few bacteria, but of course didnt say what kind, i guess it wasnt a high enough count....but i had increased symptoms the day i took the test. To this day NO lab has ever cultured my bacteria, even when i had sky high nitrates present. It something I think about often.

Sending some pain free thoughts your way.

[mela414]

Hi Mich,
I remember talking with you about that office. The thing is that when I spoke to the PA 2 weeks ago she put me on Cipro for a supposed infection. I haven't been there in about a year and probably only called there once so I don't think I am an alarmist or bother them all that much. When I called her back a week later she talked with me for a while and was actually helpful She told me to let her know how it goes and if need be we would do go the prophylactic route. I guess she just had enough....because she just totally dropped me! I am having the broth culture results sent there too so I am curious to see if she will call me then. I don't even know how they feel about the broth culture over there.
I see you also had it done. Did they know about it? Did they treat you after the results? I am considering calling Ruth for treament if the results show anything. I am certain this is an infection that just won't clear. History has a way of repeating itself and this has been a part of my life....my ENTIRE life.
What did you take and for how long? Did it help?

[mich2604]

Well, Martha posted on another msg board about another patient not having a good outcome when they presented the broth culture to this office.

But, maybe the more patients that tell them about it, the more open they will be to it. I dunno.

I didnt tell them about mine because i figured they wouldnt be too receptive, i was trying to treat lyme so I had a dr that was willing to prescribe antibiotics.
I also talked to Ruth, she was helpful, but my body just doesnt like certain antibiotics. Its tough when you have lyme because the dyeoff is so rough, and its hard to tell if it is yeast symptoms or lyme dyeoff. My bladder flares either way most of the time. My vulva also flares.

I think that the PA probably left early today because of the holiday weekend, or they were just swamped. I think more and more people are being diagnosed with IC. I would just contact Ruth and see if she can help.

when i had my hydro i told the uro that cipro seems to help, so she said i could have a slight infection and she would make note and include it with my treatment, well that was the last i saw her, so it never was included.

Ive had so many yeast infections that antibiotics are tough for me.

[mela414]

Mich,

Did you have the hydro done at this same office that I'm talking about?
How did you get diagnosed with Lyme? Was it through independent testing or through your dr.

I had parvo virus about 10 years ago and it was a killer for me. I never recovered from it and suffer daily pain with that but my bladder infections started was I was just a kid. I think my first hydro was age 7 along with urodynamics. I always got UTI's and at that time they didn't know what the heck was going on! They did urethral dilations every 2 months because they felt the stenosis was contributing to infections. I do remember the dr saying after my hydro that my bladder had "cracks" in the wall. It's now 40 years later and I still remember the exact word he used! I seemed to be better for a while and then it started to get worse. I suspect that was because I was getting older and becoming sexually active. I remember getting so many infections after intercourse! One uro even said that 3-4 UTI's a year form sex was ok. Can you imagine that?

I took Cipro for a long time after intercourse along with macrodantin at night. Now I can't tolerate a lot of the meds. I read the book "you don't have to live with cystitis" by larian gillespie and it talks alot about antibtiotics that cause flares. You should take a look at it. It was right on target with the meds that flared me. Some of the antibiotics made me so sick that I had muscle and joint pain and a really sick feeling. Eventually I had to stop.

Do you still have Ruth's number? I can't seem to find it. Can you PM me if you do?

I'm not sure how the uro's office will react when they get the C &
S form United Medical. I am sure they are waiting for the report to get back to me and are assuming it's coming from lab corp or questex. well....surprise...surprise.

If I don't get a response from them to all my phone calls and the lab test soon then I think I am done with them. I will have to find someone else to treat me.

For yeast I have been helped by vag Nystatin tabs. Have you tried that? I can't tolerate any of the creams. They burn the heck out of me!

Hope you have a nice memorial day weekend. My bladder seems a bit better after 2 doses of the Ceftin.

[ICNDonna]

If you haven't been in that office for a year, it would not be legal or ethical for them to prescribe for you without being seen. You might want to make an appointment to go in.

And --- the author of the book you mentioned did have her license to practiced medicine suspended several years ago. http://www.ic-network.com/newsroom/296.html

Donna

[mela414]

Donna,l

I understand what you are saying about it not being ethical but you don't know my situation with that office. I do not live in the state and only go in once a year to meet with the doctor for follow-ups. The rest of the appointments are done on the phone with tests and rx's done as needed. It's not like I've never had an infection before. They know that....and I also have a problem with being resistant to a lot of antibiotics for certain organisms so they also know that it often takes a while to get things right. Whatever the reason, I think it's really unprofessional to not call back a patient that you have been dealing with on a particular issue (for 2 weeks) when the going gets tough....especially on a long holdiay weekend!

As for L. Gillespie....she does make a lot of valid points in her book. As usual, you have to decipher through information in any book and take what you feel applies to you or what you can relate to. We are all different and not all ICers were created equally.