Bacteriophage therapy for IC

[dreamy]

I was reading about this therapy that helps erradicate difficult bacteria. It is supposed to be better than antibiotics for staph and bacterial infections. Has anyone ever heard about this?

[ICNDonna]

Dreamy, without a diagnosis it's going to be extremely difficult for you to find a treatment that is going to help you.

I strongly urge you to work with your doctor towards diagnosis.

Donna

[SharonA]

Dreamy...Please stop reading so much and get a diagnosis of what is causing your problems. You are spinning so fast from one maybe to another that I am getting dizzy. Trust your doctor who is treating you to help find out what is the cause of your symptoms. Have the tests necessary to determine if you have IC or not. Then, if you do, start working with the doctor to find what treatments will actually help. If you don't have IC, then you and your doctor can begin to find what is causing all your pain.

[Sarojini]

I agree with Sharon and Donna. You must find out what is wrong before you can start treatment. And, once you do begin treatment, you should start out with approved medications at the lowest dosages and then work your way up.

Things like bacteriophage therapy are "out there" even in the medical community and are still in the research stage. No one knows if it is safe or not at this point, despite what you might read on the Internet. Please give up on finding the "magic bullet" on the Internet and work with your doctor.

[MarthaF]

I agree that you do need to know what you are treating. There are tests/cultures to find out what you are dealing with. You should not have a treatment for an infection until you know what type of bacteria you have.

As far as bacteriophage therapy, it is not available in the US but is available in the Eastern bloc countries. There is a center in Tibilisi, Republic of Georgia:
http://www.phagetherapycenter.com/pii/PatientServlet?command=static_home&secnavpos=-1&language=0

Phage therapy was used here until penicillin was developed and became the treatment of choice for infections. The Eastern countries continued to use it and now it is being studied here again. The FDA has not approved it except for wound treatment at a center in TX. But I know of several women who have gone to Georgia or Poland for treatment for urogenital infections. The Phage Therapy Center is now owned by a goup of investors from the US and they would like to locate a center near the US.

The jury is out as to whether it is successful in treating deep-seated infections such as those in biofilms. Two women from the UK have just had treatment in Tibilisi and are optimistic. Phages are viruses that are developed specifically for one's particular bacterial strain so they are very specific and testing is necessary first. But there is research at Harvard and MIT as we speak: http://web.mit.edu/newsoffice/2007/biofilm-0706.html Biofilm infections are becoming very significant in many parts of the body.

So this is not so far out, but the challenge will be to win approval in the US for more than research. But the scientists realize we have to find some alternatives to antibiotics - we are running out of completely effective ones.

But testing is a prerequiste before any treatment!

Martha F

[dbritts]

Dreamy,

You can't really start treatment unless you get a diagnosis. I would suggest making a list of symptoms, and a copy of your urine culture to bring to your drs. appt. I think you'll feel more in control if you decide on a plan of action and put it in motion. The first step is to get a diagnosis so you can start treatment and begin to feel better. Approx. 20% of UTIs are caused by bacteria other than e.coli and they can be successfully treated. I tend to agree with the guest lecture by Dr. Matt Rosenberg--he stated that his patients with chronic UTIs usually have an underlying immune problem. Based on my own history, I tend to agree with him. You can have IC and UTIs--that's why the work-up is so important.

Debbie

On the subject of bacteriophage therapy--it's been successfully used in the Eastern bloc countries for years. Many companies are backing research for "phage therapy" because scientists see the failure of antibiotics to stop the rising threat of MRSA. It's been reported that MRSA caused more deaths than AIDS last year. Obviously whichever company can create a phage that successfully treats MRSA or VRE will save lives, not to mention make a fortune, so even though it's still in research, I hope it holds promise for the future.

[dreamy]

Ive been trying to get the right diagnosis for the last four months. I do agree with working with your doctor. I was told I do have IC. But, I havent had any testing to verify that other than going off of my symptoms. I havent had enough testing to rule out other things. I think I should. Dont you? See why I am going around to get opinions and look at my options? Wouldnt you? There are alot of other tests to be done to rule out other things before even doing a cysto hydro and I am going to start with those first.

Sharon if I dont research it then I wouldnt know my possiblities. A lot of people do this. Yes, I know what you mean it can get confusing though. I just cannot help but research it if I am going through something. Almost everyone has looked into things and has done some research on their own and also worked with whatever doctor they are seeing when they are going through something. I dont think there is anything wrong with being informed. I think its very important. I dont think its wrong to look at IC from every angle and then proceed in the way you think is best as well as working with whatever doctor you are seeing about this. I think that is smart. I am definatly going to do any tests I can to find out whats going on and work with a doctor on it. I am trying to do that now.

This is a forum and theres lots of different topics to post about and this looked intresting. I am not saying its the magic bullet or anything. I was just wondering if anyone knew about it. It just looked intresting.

[PlainJane]

dreamy,

Yes research research research and research some more! I could not agree with you more. Honestly if you don't do the research who is going to? I spent two years trying to figure out what was wrong with me and thanks to a very smart nurse practitioner and the internet I have FINALLY made some headway (I am finally on treatment). The doctors I was seeing were not helping me and the labels they gave me did not help me.

The problem with being very sick with something like IC or fibro or CFS or any of these chronic disorders is you have to do most of the research yourself. It's such a bind because you're so sick yet all the responsibility falls on your own shoulders ( Ok I should speak from my experience; that was my experience). It is a LONG lonely road but you have the right mindset. Research for yourself and don't rely solely on your doctor.

At the same time it is hard not to get overwhelmed by all the information that is out there. But you will get there..... you will figure it out. I think it is just a matter of time; you are persistent and "proactive" (haha I don't like that word) and those are two important qualities you need in order to get better from any chronic health problem.

I've always wanted to say this so here goes --

You go girl!! haha.

take care.

PS. I haven't read your other posts but it doesn't seem to me like you're looking for a "magic bullet". You're sick you're looking for relief and that's normal. And you know what even if you were looking for a magic bullet I wouldn't blame you. IC is horrible, keep searching for answers I think you will get better.

[dreamy]

Well I didnt know this was taboo.. the bacteriophage therapy? It just looked intresting thats all. Why not read about it at least? Researching is something I like to do especially if it can help me get more awnswers about things or just to learn about something new. Its intresting. A lot of people do this everyday. I do know what some people mean though because it can get confusing in a way.

Hey plainjane I really liked your post. Thank you!

[karen10]

Dreamy,
My doctor specializes in IC (attends all the conferences, etc) and she has shown me the research (and I made copies of all of it!)--can be found in Urology 69 (Supplement 4A), April 2007. It says that the PST (potassium sensitivity test) is considered to be more effective than a cystoscopy in detecting IC. In fact, in one part it says: "The use of cystoscopy in the identification of IC is not supported in the literature." Historically this test was used to be able to view an ulcerated bladder. IC wasn't diagnosed until the ulcers were founds. Today we know that the early stages of IC doesn't reveal any ulcers, and therefore IC can't always be determined from a cystoscopy.

A normal bladder doesn't react to potassium, while one with IC (even in early stages) definitely does. This test has a very high accuracy rate (again higher than other previous tests). This research says "Although there has been a reluctance to accept the PST as the best test for diagnosis of bladder origin pain, it has demonstrated a positive result in up to 96% of patients. Currently the PST is the most widely reported diagnostic test for IC and has the highest sensitivity." Together with medical history, labs, and symptoms, this is what my doc uses to diagnose and treat IC. IC is a diagnosis that many physicians are still reluctant to give, and understandably. But they also found (same source) that earlier diagnosis and treatment has much greater success in "improved patient outcomes." So ask your doctor to read this and/or find a doctor who is willing to give you that test, so you can move on with your life! :smile tee

[elamar]

Just for the record, I took the PST and came out negative for IC. I still had all the symptoms - pain, urgency, frequency, etc. I have been tested extensively and all tests have come back negative. I had they hydroextension last Jan. that showed pinpoint bleeding. For some reason the doctor did not check for mast cells. That is the only way I have been diagnosed with mild IC. I still question the diagnosis, but no one can find anything else it could be. So the PST is not the best test out there!

[ICNDonna]

There's still some difference of opinion in the medical community about diagnosis. Some feel the potassium test is best; others rely on hydrodistention and biopsies. I was diagnosed by hydrodistention before the potassium test was available.

Dreamy, are you following an IC diet? If not, I think it would be a good idea. It can't hurt and very possibly could help you feel better.

Donna

[karen10]

So sorry it's not been a clear and easy answer for you! You are right though, the newest research shared by my doctor (dated April 2007) did say that in about 4-5% of people it didn't come out positive, despite symptoms. I was just quoting the research. If you can get your hands on this information (go to a medical library at a local hospital, it's often open to the public), you can read it for yourself, and that's helpful.

It's very exciting to see the progress that has been made. Since IC isn't a "popular" disease, meaning there's not as much known in the medical community about it and it's had a bad reputation historically (women were considered neurotic who had it!), it takes a long time for new research to trickle down to the medical community. But the reality is there isn't one test yet that detects IC 100% of the time. Unfortunately that's true for lots of other health issues as well!

I work with patients who deal with chronic pain and one thing I've learned is that patients do best when they are able to manage their own healthcare. This is NOT to say that you ditch your doctor! :smile tee Instead you work WITH your doctor by learning what you can about your illness, keeping a symptom journal, eating appropriately for your condition, getting into a support group, etc. Be proactive in taking care of yourself!