This is crazy now I am REALLY confused! But we have an open door!

**Romans8:28** · 03-13-2006, 03:44 PM

Part 2 (From met with the microbiologist and I am so excited!)
The hospital called today, and said yes that I had grown pseudomonas,and he even did senstivity test too, as a favor, (from the broth culture I did myself).., OK now the confusing part, it wasn't the pseudomonas aeruginsa, that we suspected but something weird Pseudomonas oryzihabitans. I picked up the paper on the way to the doctor. He took it seriously, but had never heard of it! I later found it only causes disease in humans very rarely but again it is an opportunistic pathogen, only infected those with compromised immune systems. It is only moderatley resistant to Cipro though so could be why we are knocking it out..., The doctor said this could be very well be our biofilm..., (it does often grow along with pseudomonas aeruginosa, but was probably not considered a pathogen when they found the orginal p. aeruginosa and i was treated with Cipro.?? Just thinking out loud.)
The bad new is it is only moderately suspetable to the Cipro I am on, and only suseptable to Bactrim, I've been trying to avoid, other then were still left with only IV's;(!

along with the calcium in my kidneys he was super encouraging about knowcking it out...,
The doctor at this point put IC along with a biofilm infection possible caused by the iC weakened bladder lining.
The exciting part is he has ask me, since all the info is not in one comprehensive place, to write a research paper on broth cultures and explain it in specifics etc. Since the lab has said they will do what ever he orders, he is interested in using it to find specfics, in his chronic infection patients.

I am also to do the broth culture again, IF I can grow it again he is going to call the microbiologist I talked to and ask him/per doctors orders to test it again. Even if I can recognize the pseudomonas, he want to know the exact strain again. We also would like to make sure it is not just an enveriomental contaminate!

So any support and encouargement/broth reserach would be VERY appreciated! THis could be a great oppportunity!

How can one person feels so excited at the possiblities and yet so confused at the same time

**purpleviolet** · 03-13-2006, 07:42 PM

Wow again Romans - are you switching to Bactrim? How can you grow culture if you are on an anti-biotic that might be suppressing it to the point that it can't grow? You think you have a biofilm of this strain in your bladder? Isn't the problem that the anti-biotics can't get thru to a biofilm? What evidence is there of a biofilm? Wouldn't you have to keep having recurrent UTI's caused by the same germ and so they would figure there is a biofilm that keeps on spewing infection? The tricky thing about a biofilm is that maybe in has states when it isn't spewing and then times when it is. Yes, this is confusing. Could many of us be harboring these weird germs and how can we find out? Sorry so many questions I really don't think anyone can answer. PEeVee

**Romans8:28** · 03-14-2006, 07:33 AM

No I am not switching to Batrim.., yet. I want to do another broth and culture it again, so does my doctor. He has said this time, as soon as it (if) it starts growing he is going to call and ask the microbiologist to test it again. He will actually write the orders so they can bill me and not just be asking for another favor. So I want to wait to switched meds.
I also did some research and learned a lot, basically I have 4 theories and will try to prove them.
1) it is an enviromental contaminate. I don't think so but at least need to do another culture to elimnate this one.
2) I picked it up doing my home instills.., possible but again I don't think so because this has been on going for many years.
3) I learned that p.oryzihabitans live in the cluster of p.aeruginosa. Untill recently they have not been consider a human pathogen. Recently they have found they can cause disease in immune supressed people, maybe even like the iC Bladder.
If it was not considered a human pathogen, 10 years ago when I had the first bad surgery and p. aeruginosa. It would not have been reported or considered for antibiotic testing. Considering that at the time I had 50.000/ml of pseudomonas and greater then 100.000 colonies/ml of streptococci. This is a good possiblity.

OK the p.aeruginosa is/was suceptible to Cipro, which I took for only 1 week, originally. but the p. oryzihabitans was only moderately suseptible to it. The Cipro might have killed the p/ aeruginosa and left the p. oryzihabitans still intact to form biofilms or even if the p. aeruginosa did form biofilms, since it wasn't properly treated at the time, the Cipro may have it in check, which is why we don't see it, but the oryzihibatans is still there?
This is maybe somewhat confusing in treatment. (We have A LOT of reserach that points to a biofilm infections. 1) Even trying to go off the anitbiotic or lowering it, I have SEVERE kidney and flank pain, and then eventually it begins to show up as blood, protein and sometimes white blood cells in my urine, though not all the time!) etc.
If I just go off the Cipro and it does have at least the p. aeruginosa in check, this is not suseptible to the Bactrim, I could be in trouble too!
So, first will see what the next culture shows. Then may ask my doctor what he thinks about doing like a 6 week rotation of the 2 antibioitcs and see how it works, don't know yet!
Anyway after a day of research and thoughts this is where I am at.
As far as other. I don't know. There is a lot of research and experinece that says many IC patients MAY be chronic infection patients. I think it is wise for this to be elminated in treatment. There is also evidence that the IC bladder may be good ground for opportunistic pathogens. This could cause increased symptoms in the IC patient. Each person needs to answer that question for themselves with their doctor, it just something to consider.

**Katrina** · 03-14-2006, 08:26 AM

Thanks for sharing all of that! I sure hope that you can figure things out and end up feeling better in the end!

**grumplefuz** · 03-14-2006, 10:26 AM

huh?

**Romans8:28** · 03-14-2006, 11:55 AM

Sorry I was in thinking mode and my computer sent it before I could proof it, then had to get off line. Does that make a little more sense grumplefuz, or do I have you totally lost??

Katrina, how are YOU doing?

**Katrina** · 03-14-2006, 12:31 PM

flaring....doc saw nitrates in my urine...beleives yes I got a UTI but that Cipro seems to be helping....he didn't think a culture was worth it with all my antibiotics ....I didn't disagree but so hoping this flare would end!!

**Romans8:28** · 03-14-2006, 12:42 PM

Sorry, Katrina but sure hope you are better soon!

**glenda** · 03-14-2006, 04:29 PM

I'd like to mention that a biofilm infection is extremely difficult to culture. Pretty much, the only way it is even capeable of being cultured is if the biofilm is slaughing, and then it's hard to culture and identify. So, if you have a biofilm infection and you get a negative culture result, it doesn't mean that the infection isn't there. I've been doing tons of reading on biofilm infections. Biofilms are a very hot topic in the biochemistry field these days, because they are so difficult to detect and to treat! Biofilms consist of clusters of bacteria, often times many different bacteria together. Once in the biofilm, these bacteria communicate and build up their own defense mechanisms to threatening chemicals, such as natural immune responses and antibiotics. Basicly they develop their own immunities to human immune defenses and to antibiotics, which makes them incureable, at least until scientists are able to find an effective treatment. They are finding these biofilm infections are involved with many human diseases, and have not yet found a successful treatment or cure. Biofilms are not free floating bacteria, which are what tests culture for. They are clusters which adheir or glue themselves to a solid surface, like human tissue, and stabalize themselves there, collecting nutrients from surrounding tissues. Scientists have not found a successful way to remove them from human tissues. This is causing a huge concern for medical biologists who are comming to the realization that these biofilms are seen in many cronic disease patients. They can affect many organs of the body! Also, they are finding that these bacteria have the ability to build stronger and stronger immunities, so as a patient is treating their symptoms with antibiotics, these bacterial clusters, in their protective biofilms, are developing immunities to these antibiotics, making them even more ineffective against them.

Glenda

A little something about biofilms to read:

www.arches.uga.edu/~jeffp/harmful.html

**purpleviolet** · 03-14-2006, 07:26 PM

I hope you saw my old posts on biofilms and loctoferrin - but it doesn't help biofilms already there. By the way when it comes to mycoplasma infections I e-mailed this very specialized lab Clongen and the director actually replied saying IC is complicated but can involve organisms - to work with doctor, etc. It was nice the director replied.

**Romans8:28** · 03-15-2006, 03:15 AM

Exactly, that is why I was shocked and amazed that I grew the pseudomonas. I really feel this maybe a break through and open doors for others, but it is also scary, a little overwhelming and I could really use a little encoragement and support. The amazing thing here is neither my doctor or the microbiologist doubt that there is most likely a biofilm infection. Truthfully when told what happened they seem VERY concerned.
My doctor was not super encouraging either. Whether this IS the biofilm infection or just the tracks in the snow pointing to it, along with the research on biofilms in the calcium in my kidneys he believes I will have to be on antibiotics indefinately! Yet, he and the microbiologist are willing to help me any way they can. In the process they are open to new forms of culturing etc. and see the potential to help other patients.

This I feel is incredible but now I NEED some help and prayers. Prayers that if this really did come from me as we believe that I can culture it again.
I have some but NEED MORE RESEARCH ON BROTH CULTURES, and purpleviolet, if there is anyway you could pm that lab directer if they would talk to me I would appreciate it. Actually anyone who knows a microbiologist that would just talk to me I would appreciate it. (I can't really get into or call to the one at the hospital here. Things now will have to go through my doctor to him!)
Since this is a hospital, I believe that down the road, if my doctor starts odering the broth cultures and using them, they maybe willing to do them from even out of torn doctors. As I've said he is open right now, I just have to give him a research paper on it. He already treats many chronic infection patients and sees the potential of finding and treating specific bacteria!
So PLEASE help me!

**glenda** · 03-15-2006, 03:53 AM

Romans,
Just so you know, I've been working on this myself. I've been emailing microbiologists and universities, etc... It's hard to get a reply, but I don't plan on giving up! I wish I could do something for you, but as it stands, I'm having a hard time doing things for myself. I've found a lot of great info. on biofilms, which could explain a lot, but the scary thing is that scientists have not yet found an effective cure for this type of infection, on the contrary, they have found that in some cases, treating these infections with regular low dose antibiotics only encourages these bacteria to build up stronger immunities, makeing them even more difficult to treat. What's wors is that doctors don't know much about these infections, and often don't think about or concider them. They all seem to be in the dark ages, thinking that bacteria are all free-floating, and that they should be able to culture them and simply treat them. This is so wrong. One of the things I don't understand is why this isn't a much bigger concern in the eyes of the public. Why isn't this being publicized like it should be - why don't more doctors know more about this, and so on. We definately need more research in this area, but it doesn't seem to get much funding, especially in the area of IC and biofilms. It's not getting enough attention. Well, enough about that, I hope you can figure things out for yourself and work out a good treatment plan! Would you be willing to let me know how you got the equipment, chemicals, and instructions on how to do these cultures yourself, particularly the broth ones? And, did you ask the lab tech if you could contact him personally until your tests are resulved? I would think he should still be willing to talk to you, concidering the great concern about what you've discovered with the broth culture.

You're in my prayers! Hope all goes well!

Glenda

**purpleviolet** · 03-15-2006, 07:03 AM

Romans - find the Clongen site and see if it meets you and your doctors needs. I'm not sure - it was so technical and seemed to apply to cell lines and contamination, etc. I decided to let you see what this guy e-mailed me, but I hope I'm not breaking any rules. Maybe they could help you.
"Thank you for your inquiry. I have read about IC and it can be rather complex. IC can be caused by infectious agents but can also be caused by a number of other conditions. I suggest that you consult with a specialist and we will be happy to do the testing you need if it is something that we offer. A bacterial culture as well as Mycoplasma species test could offer some insights but your doctor would be the best judge based on his/her clinical evaluation. Please contact me if there is anything we can do to help you. I hope you feel better soon.

Best regards,

Ahmed

Ahmed Kilani, Ph.D., MT(ASCP)
President and Laboratory Director
Clongen Laboratories, LLC
Middlebrook Tech Park
12321 Middlebrook Road, Suite 120
Germantown, MD 20874

877-CLONGEN (256-6436) - Toll Free
301-916-0173 (Phone)
301-916-0175 (Fax)
website: www.clongen.com"

**Romans8:28** · 03-15-2006, 09:05 AM

Thanks for for your help pupleviolet! I really appreciate it and will check it out!
Glenda, all the details of how we did this are listed under met with microbilogist and I am soo excited. We are a homeschool, so as a school have access to many science supplies. We also have a business that includes testing water so again have a more open door. I really didn't expect to be able to culture it. We were actually just doing some experiments to understand culturing better and compare broth to simple agar plates.
I ask the microbiologist how I could get a hold of him, and he said through the front desk. Since my doctor is very much apart of this, I believe at this point things need to go through him. He really wants the next test, and said he would call him and write the orders but he would make it so I could take the sample myself, to keep some lines of communication open. I don't in anyway want to take advantage of this mans kindness!
SINCE YOU OBVIOUSLY ARE GOOD AT RESEARCH AND KNOW THE NEED FOR BETTER CULTURING AND TESTING. YOU CAN HELP BY LISTING RESEARCH ON BROTH CULTURES ETC. OR EVEN THE WEBSIGHTS YOU HAVE FOUND FOR BIOFILMS. THIS COULD HELP ALL OF US!
Without hope in God's ability to provide answers, I would feel hopeless, but seeing God's hand in how he has already worked and open amazing doors, I trust!

**MarthaF** · 03-15-2006, 01:01 PM

Many of you may know that I have posted on the need for broth culturing to find hard to culture bacteria for years. Dr. Fugazzotto deserves the credit for discovering this over 20 years ago in his lab and performed them for many of us. The detailed description of how he did them is on his website:
http://luna.moonstar.com/~crc/lab.html

Dr. Fugazzotto "washed" the specimen first to get rid of any contaminants that could cover the bacteria. He found predominantly Gram positive species such as Enterococcus and Staph, but also Gram negative such as Klebsiella and Pseudomonas. We have found most urine is not sterile in a study we did of broth cultures of 50 IC patients and 50 controls. Most lab cultures are not allowed to grow long enough to find many species. We know many can tolerate bacteria but others cannot and become symptomatic for probably a variety of reasons. Some think trauma such as an operation causes the susceptibility to infection. The Japanese are theorizing it is due to genetic factors.

As of now there is only one lab in the world that we know of that will do broth cutures - United Lab in McLean, VA. We are currently talking to another lab with the hope they may also do them.

As to biofilms, Dr. Hulgren found that E. coli form biofilms several years ago and it was national news. Just recently the Japanese researchers have found that Enterococci form biofilms. Also at Duke University they have found the bacteria that cause bacterial vaginosis form biofilms so they seem to be the hot topic today. Hopefully this will lead to better treatments.

Glenda, you have found some information about ultrasonic methods of treatment, haven't you?

Soon we hope molecular testing will come online and will speed up the identification of UTI bacteria - and there are many species that could be present in addition to the usual E. coli that the mainstream concentrates on.

Martha