doxycycline

[louise]

Hi,

For anyone who has taken Doxycycline, could you please tell me how well you tolerated it. Also, does anyone know or heard of it causing a bacterial infection in the intestines called "C.Difficile"?
I took Amoxicillin in 2002 for about six months and ended up in the ER and then the hospital for ten days with a very serious dose of C.Difficile. So now my doctors will not give me antibiotics unless I have a life-threatening infection or some other serious problem.

I have read Martha's posted article on the study in Switzerland and 103 subjects who took Doxycycline for two weeks (100 mg. twice a day) and another two weeks (100 mg. once a day).
The result was that 71% of the subjects either considered themselves "cured" or showed significant improvement.

Now for me who has been suffering like a lot of others with severe bladder pain and medium-grade UTI's, the results of this study are very encouraging. But at the same time, I cannot contemplate enduring another episode of C.Difficile (this was my second; I had it first in 1995).

Any information or advice or opinion would be greatly appreciated. I have forwarded the afore-mentioned article to my female urologist for her opinion prior to perhaps contacting my Infectious Diseases doctor who probably will think I am crazy for even considering taking another antibiotic after my C.Diff. experience of 2002. Well, yes, maybe I am crazy - crazy with dealing with this excruciating bladder and pelvic pain for almost 30 years.

Now that I got that off my chest, perhaps even one of my other health problems (COSTOCHONDRITIS) will feel better!! Thanks for letting me get up on my soap box - I needed that!

Sincerely,

Louise



:angel:

[tigger_gal]

I was on Macrobid for six months because I got this never ending bladder infection last summer.. but I also had a bad summer any way...
Doxycycline... danger come to mind for me I had a horrible flare from it then I broke out in nasty hives.. Sleepangel posted a great article on Doxycycline.. but I can't find it now..
:kiss:
Brat

[lotsofgirls]

hey Louise,
I was thinking about this but I am in a moderate phase right now and having some good parts of days so I think I'll take a pass. I have been working hard with my diet and did a RIMSO and then with all the meds started improving. Neurontin is helping alot.
Take care,
Cath

[louise]

Thanks for all the info you posted and for spending all that time doing so!! I had a urine specimen tested via broth culture method by Dr. Fugazzotto and he found Enterococcus. A C & S was done and I first tried another antibiotic Augmentin but it only made my bladder pain worse. So the next recommended AB was Amoxicillin. I took the info about and by Dr. F to my GP and we agreed since some of the urine lab results showed the same as Dr. F's it was worth giving his treatment a trial as nothing else was working for me. I had talked to a number of ICers who had followed his regimen after having their urine tested by him via broth culture method and a good number of them had very good results.

I also talked to Martha Foster who is an excellent source of information on the broth culture testing and a proponent of it. It seems for some ICers to have given excellent results but as we all know what works for one ICer does not necessarily work for another. Very frustrating!!

Unfortunately for me taking the antibiotics turned out to be a disaster. I was also taking Acidophillus but I believe my immune system was compromsed at the time as I was doing a lot of volunteer work at a nursing home where the C.Difficile infection is prevalent and was probably a factor in my getting so ill.

So now I am very dubious about taking antibiotics again but at the same time I am desperate to find something that will give me relief from this severe bladder pain. I tried L'Arginine years ago and even talked to one of the female doctors involved in a study they did. Unfortunately, it had little effect on my IC and if anything made it worse. I think I have come to the conclusion that for me doing nothing for my bladder is the best and just treat it symptomatically which means watching my diet as well as trying to get as much rest as I can.

Thanks for the other responses as well. Any infomation is greatly appreciated.

Louise

:thumbsup: :thumbsup:

[Annie2]

Bigdog:

The Reuters news article is simply that, a short news article summarizing a report published in The Journal of Urology, that, in turn, is a summary of the results of the Swiss Doxycycline study. My interpretation of this report differs from your opinion. I do not believe this study has been published to imply treatment with Doxycycline is a quick fix for all IC patients. Rather, it is a report indicating some IC patients have had success with this treatment and, therefore, it warrants further investigation. It merely suggests, especially for patients presenting with probable IC, that a course of Doxycycline may be valuable and could be tried (subject to an urologist’s evaluation of the individual patient) before formal IC diagnosis and beginning the trial and error of conventional IC treatments.

In my opinion, this study does NOT promote long-term or casual antibiotic treatment nor does it suggest such treatment will heal everyone. I think it is obvious treatment with Doxycycline is inappropriate for patients with adverse reactions to the drug and may be inappropriate for those who have developed resistance to antibiotics due to long-term use. Only a physician would be in a position to evaluate the appropriateness of attempting this treatment for a particular patient. I do strongly agree with you that, as patients, it is our responsibility to be as informed as possible about the medications and treatments offered to us so that, in partnership with our physicians, we may choose a course of action that is appropriate for us.

This Doxycycline study certainly did have an objective follow-up in addition to the subjective opinions of patients. Thirty-one of the study participants consented to follow-up bladder examination. The purpose of this second bladder examination was to evaluate the effect of the treatment on the trigonal leukoplakia. Of the 31 participants, 8 patients experienced complete resolution of the leukoplakia, 12 had a decrease in their extent, 10 women experienced no change and one patient showed an increase. Though this is a small sample, the success rate is significant and, to me, seems impressive.

I am not a physician and wouldn’t presume to recommend this treatment to anyone else nor would I discourage anyone from considering it. As an IC patient, I am going to discuss this with my urologist and, together with my husband, will make the decision that we all feel is right for me and my particular situation.

Annie

[kelly McC]

I was reading these posts and am confused. Can someone explain what a broth culture is ? Is it when your culture is tested to see what bacteria is present ? I also was put almost for a year on some sort of antibiotics? Everyone including myself thought it was weird but this is what my MD kept giving me. I can honestly say when I did the six month one a day my bladder pain remained but the kidney and lower back pain went away. This was before I was diagnosed.
Thanks ,
Kelly

[Indy]

Hi. I have spent the last 72 hours on the internet and phone investigating this article from the July, 2004 Journal of Urology. I even e-mailed the scientist today (I hope she speaks English) to ask more questions about the study, specifically, what organisms they thought they were treating.

I found out (after ordering a broth test kit by mail) that this test is very contraversial. The lab claims the urine won't "spoil" during shipment but another article said the bacteria would multiply and the results would be false negatives.

It seems the hidden bacterial in our bladder walls could be, if not the cause, the reason for the condition or flares. The stealth bacteria named, mostly enterococcos, is gram positive and doesn't always show unless it is in large numbers on the standard agar slide.

I called my urologist and told him I ordered a "broth" kit and he had no idea what I was talking about. I think he thought I said "bra."

What is really interesting to me is that I have had this disease 10 years but never as badly as when I got a severe ecoli infectionn from a swimming pool. I never felt the same and think I may have infection in my bladder walls. I'm also intrigued by the thought of treating my husband since when I do have short remissions and have sex, I may be recatching the bug.

I called my urogyno and he said he already uses this treatment and there is no need for the broth test since doxycycline treats this stealth stuff anyway. I am going there tommorrow for the details and he is having me take 5 days of levaquin before I start the other. My husband has agreed.

Even if this works as a placebo I will be happy. I have flunked every other treatment and don't want to end up in a pain clinic.

[Indy]

I meant false "positives" from the bacteria multiplying.

[atkinsonfmaily]

Indy,

Just curious if you have started the doxycycline yet. Did the levaquin have any effect? My sister in law was having pelvic pain, urgency and frequency following a UTI and was sent to the urologist for a possile IC diagnosis, as suggested by her GYN. Before doing any diagnostic test the urologist put her on Levaquin for 7 days. She said that it helped alot. I haven't talked to her since to see how she is feeling now, several weeks later. I assume the Levaquin is just a stronger antibiotic than what is normally given if you have a regular UTI, is this correct?

Thanks, Heather

[Indy]

I took the leviquan for 5 days which is supposed to kill enterococcus and a lot of stuff. This is often found in the broth culture. My husband and I started the doxycline on Tuesday. I feel better this week since my period started. I plan to be on the doxycycline a month and will tell everyone what happens.

I also have a hormonal component to this that has to be addressed. I have perimenopause and I have really short cycles so I am always "before my period" flaring.

Has anyone tried progesterone cream?

[KEC]

Where can you get this supplement? In the studies it said they used a pure form that they dont have in the health food stores> Kathy

[terrierhead]

Indy, where did you get a broth culture. I just asked a nurse at my uro's office about it and I don't think she knows what I was talking about. :dogrun: