Relief from Augmentin?

[meg31]

Hey all-

I was diagnosed with IC earlier this month but have had symptoms since July. My uro kept finding enterococcus in my urine at low levels (less than 10,000 counts) which I guess is not enough to be considered a UTI but she was still concerned. She put me on Cipro for 7 days and then took a clean sample during my hydro/cysto to check if the infection was cleared and said it was gone. I had a great meeting with her after my surgery and she said she thinks the constant low level of returning enterococcus could be contributing to (causing?) my bladder inflammation and irritation. She did a sensitivity test and put me on long term Augmentin (1-4 months, depending on culture) one low dose at bedtime to prevent it from coming back. I've been on it for a week and already feel better. Is this a coincidence??

So my question is, is there research out there about enterococcus causing IC or contributing to ongoing problems/preventing recovery? And has anyone else had problems with enterococcus or found relief with Augmentin? I'm still convinced there is a link between bacterial infection and IC but of course, I'm no doctor!!

-Meg

[Katrina]

I won't speak on research but there are many other patients and other doctors that beleive that there are some cases of IC that were caused by infections, an low grade amount of bacteria,and so on. I have not heard of any doctor being convinced of one specific bacteria being the link....there are just some that are more common than others.

It is quite definate that bacteria left un treated or not treated well enough can do dammage to the bladder....thus giving the person IC.
It is also possible that other things do dammage to the bladder. The thing that links us all is the dammaged bladder...something beginning that, and our bladders not healing very fast from it.

Is your IC caused by bacterial infection or infections...quite possibly. We are all different though....I seem to have multiple causes to my dammaged bladder.
I hope that as you take antibiotics you take a probiotic as well. I have done antibiotic treatment and the beginning I did find it helpful...but later on I ended up with symptoms again....I a starting to wonder if one of the reasons of that is yeast.

When we talk about bacteria as a cause we need to do so on an individual basis.

I sure hope youget some real long term relief from this! :grouphug:

[meg31]

Thanks Katrina!
You seem very knowledgable on this topic and I appreciate the info and advice! I am taking acidopholis and also a lactobacillus probiotic drink. I don't know if it is helping to prevent yeast yet but it sure is helping with my digestive tract!

-Meg

[MarthaF]

Meg,

You are a good example of what I have been posting for years. I just posted under "Different Approach" on this thread. Please read that post and if will explain a lot about this approach of a bacterial connection to chronic bladder symptoms that is being ingnored by the mainstream.

Yes, we have done research that has found that a majority of IC-diagnosed patients do have Enterococcus. Because it is slower to grow out and does not always show 100,000+ colonies the labs and doctors dismiss it as a contaminant. We now have a lab in McLean, VA (United Medical) that will do a broth culture. There is a nurse practitioner in DC/Fairfax who is treating patients based on a positive culture. I am not allowed by the moderator here to post her name and number but if you email me I will be glad to furnish it to you. You are a prime example of a patient with this kind of infection and I am glad your doctor had the sense to recognize that that was probably contributing to your symptoms. And it does take months of treatment. Augmentin/Amoxicillin are good antibiotics for it.

Our research is finished and the researcher is planning to submit the results for publication which will help gain recognition for this approach, although the NIH and other top IC researchers have been aware of this for years. The U of MD research in 2000 or 2001 that was published in the Journal of Urology claimed they could not find a consistent pathogen; yet 48% of those treated with a series of 5 different antibiotics for 3 weeks each improved. It was a scattershot approach and poorly designed study and they claimed 48% was not significant. But it should have been a big clue!

I am glad you posted your experience. Enterocccus is a major inhabitant of the intestines and can easily enter the urethra and bladder, just like E. coli and should not be ignored. Please write me and I can fill you in with more details, such as where to find success stories. Just can't put it here.

Martha F (mfmidlo@aol.com)

[meg31]

Martha,
Thank you so much for your response. It has really given me some hope that there may be an actual defined cause out there for IC. It's funny you mention United Medical because just this morning I dropped off a urine sample there to get a broth culture done because I've been obsessed with this theory. I'm lucky enough to live close enough to go there to bring a clean and fresh sample. I can't wait to see the results! One thing I am worried about though is that my uro only put me on a very low dose of Augmentin (125) once a day. It's not even sold in pharmacies and had to be special ordered. If I do have enterococcus infection, is this going to be enough to kill it/keep it from coming back or should I discuss a higher dose with her? My bacterial count was less than 10,000 so it's not a raging infection, as you said is common. I'm going to email you for more private info/details.

Thanks again!
Meg

[MarthaF]

Yes, please email me and I can give you more details. We theorize that the Enterococcus is not an uncomplicated UTI since it is able to invade the tissue and probably takes a larger dose of antibiotic. There are many fine points to this treatment but many have success with it. I know that the nurse practitioner would be happy to contact your MD to discuss her approach. She had IC herself so is throughly familiar with this treatment. This approach really got its first recognition over 15 years ago within the Northern VA support group and there are many who have been successfully treated even though the medical community has not supported it. The labs are not culturing long enough/extensively enough to find some slow growing species. Sometimes if the doctor asks the lab to let it grow for up to 5 days the Enterococcus will show. But broth is even better although the lab techs have not been taught that method. Too time-consuming and expensive for the lab industry. High tech DNA methodology is on its way.

[PlainJane]

Meg,

Your urologist sounds fantastic! You are right that your dose might be too low though. I am working with the nurse practitioner Martha referred to and she is wonderful. She recommened a broth culture for me and the first one found enterococcus and the second broth culture found Klebsiella. I'm almost dreading doing another one I don't want to know what else is in that bladder of mine! I was on Augmentin and just finished up a round of it for the Klebsiella. Unfortunately I am not feeling better. I am on Bicillin intramuscular injections right now for the bladder infections.

However, not all hope is lost because the nurse found out why I am getting all these bladder infections and the reason is chronic Lyme disease (probably have had it for 14 years). Anyway Lyme can cause some miserable bladder symptoms. So I'm going to see a Lyme specialist in 2 weeks to see what he says.

Anyway, I absolutely agree with you that bacterial infections are one cause of interstitial cystitis symptoms. I do think that your dose of Augmentin is too low. I was on 500 mgs twice daily. Anyway, but I'm still glad to hear that there are some uros out there willing to treat low grade infections.

~plainJane

[meg31]

hi plainjane-

yes, it is great to have an open-minded urologist. she doesn't know much about IC but is very interested and supportive when I go to her with new information and suggestions. I mean, unless the uro is an IC specialist, I can't really expect her to do as much research on this topic as I do, right? I think she knows that too :)

You're right, my dose of Augmentin is too low. I just had a phone consultation with my uro this morning and she upped my dose to 250mg twice a day in case I have an infection. We're awaiting the results of my broth culture to determine what is the next step.

Interesting about the Lyme disease being the source of your problems. I hope you can get it treated easily! It's funny because I thought I had lyme disease a year ago after finding a tick in my scalp three days after a hiking trip in New England. I felt sick about a week later but it passed. After that I had some weird symptoms like stiff neck, sweating at night, etc. but attributed it to stress and never got it checked out. How do you determine if you have Lyme disease? Now you've got me thinking....

Good luck with your treatment (what is the treatment for lyme disease?? long term antibiotics??)

Best wishes,
Meg

[MarthaF]

Meg,

Now that the subject of Lyme has come up I need to tell you that the nurse practitioner has been finding many cases of Lyme among her patients. There are only a couple of good labs for Lyme testing and she knows of them. She was literally blown away when she began to find so many posititves. Unfortuntely Lyme Disease in this country is another controversial diagnosis. The CDC has made the criteria very stringent and many Lyme Literate MDs do not agree with these. Lyme can affect almost any organ in the body and can mimic other diseases so it is critical to have good testing and a knowledgeable doctor.

I think you should discuss this with the nurse practitioner or a good doctor. There are some good specialists in the greater DC area fortuntely. And, yes, the treatment is antibiotics. The woman who was responsible for pressuring the Yale doctors to find the cause of hers and her family and friends symptoms in Lyme, CT has written a book about her journey. It is called "The Widening Circle" by Polly Murray. She was accused of not being sick and was hospitalized in a psych ward since they could not find her problem (sound familiar?). They finally figured out it was caused by tick bites in 1975. The disease can be found in all parts of the US and Europe.

There are many websites for Lyme disease. Apparently the bladder is a common site of Lyme symptoms.

Martha F

[meg31]

Wow, I didn't realize this connection between Lyme and bladder problems. After plainJane posted I called up my Federal Occupational Health Unit (I work for the government) and they're going to do a Lyme test for free because I work with animals. I think it entails an ELISA test, which is followed by western blot if it comes up negative. I don't have too much faith in the Government medical system so if I get a negative result I will follow up with someone more reliable but this is quick and free for now. I'll let you know what the results are!

Thanks plainJane for giving me the heads up!

What are your thoughts on Candida? I've read a lot about it. Is it just a result of taking long term antibiotics or could this be the root of IC problems? Can a broth culture determine Candida presence? I have so many questions!

Thank you all for your responses and input.
-Meg

[PlainJane]

Meg,

I'm glad you're checking out the Lyme thing. And you're wise to be wary of the ELISA test because it's not very accurate for Lyme. When I read the part in your post about the stiff neck and nightsweats I was concerned because those are classic Lyme symptoms. As you might already know Lyme can lay dormant for months or years so you might have long periods of relative wellness and then some random unexplained symptoms then you might feel okay for a while. And yes IC symptoms can be a big part of Lyme. I really hope you do a thorough follow up on the Lyme thing.

The conventional treatment for Lyme is longterm antibiotics (expensive, gruelling and miserable!). I am going to see a specialist in a little under two weeks to discuss treatment and all my symptoms. Martha is right that there is a huge controversy over the treatment and the debate is split between two groups of doctors. The first group believes that Lyme is easily cured with 1 (read one!) month of antibiotics or possibly 2 months of IV at the most. The second group believes Lyme is much more complex and requires extensive treatment that extends at least 2-3 months after the patient's symptoms have disappeared. Needless to say I have a lot more faith in the second group of physicians. There is a lot of research that shows Lyme is a very complex organism and is exceedingly difficult to eradicate in the chronic phase (and I do believe most cases are chronic as very few people are lucky enough to get the bull's eye rash and get proper diagnosis and treatment). You are already ahead of the game because you know you had a tick bite and you know the limitations of the ELISA test too. I never saw any ticks nor had any rash yet I know I was bitten (my co-infection tests show that). I've had 2 negative ELISAs but that is not uncommon.

I'm not sure if the Candida question was directed to me or Martha but I will answer anyway. I don't know that much about Candida unfortunately but I do know it can cause urinary symptoms. But in your case knowing you've had a tick bite and nightsweats and stiff neck I would think Lyme might be possible. You might also have candida too. Longterm antibiotics can definitely cause candida that's why you need to work on the candida while you get treatment. I do believe that United Medical lab can test for candida.

Anyway it sounds like you might be on your way to figuring this all out. That's great!

~plainjane

[MarthaF]

I second everything PlainJane said. And I do think United can find Candida in the urine, but it can be anywhere in the body. The MD just found Candida in a stool analysis I had. Anytime one is on antibiotics she should take an anti-fungal like Nystatin or Diflucan, prescribed by the doctor, and be on a yeast control diet. "The Yeast Connection and The Woman" by Wm Crook is an excellent book about yeast, which is not taken very seriously by some MDs.

From what I have heard IgeneX Lab in Palo Alto, CA is the best for Lyme testing. Amy Tan, the author who wrote "The Joy Luck Club" had Lyme and had a very difficult time finding anyone to diagnose her. She has written a little about it in her latest book but there is also a long article somewhere on the internet about her journey through treatment. Only about 50% get the bull's eye rash which complicates the diagnosis.

Lyme is a whole other health topic but I think it is appropriate to mention here since there are many co-infections that go along with it and other physical manifestations as PlainJane mentioned. Maybe the Lyme is dormant until some other infections activates it. But many IC patients have other problems that could be attributed to Lyme. Since the diagnosis is so controversial many probably go undiagnosed. There is a LabCorp test for natural killer cells called the CD 57 panel. This gives some possible indication of a weakend immune system. There are many Lyme specialists and if you search on Joseph Burrascano,MD, and Ronald Stricker, MD, you will find good information. It is really another instance of having to do our own reseach, isn't it PlainJane?

[meg31]

I'm really enjoying this thread and hope others will read it and do their own research as well. Thank you both for your great input and experience!

-Meg

[ICNDonna]

Antibiotics usually have anti-inflammatory qualities, which can definitely make you feel better. When doing your research, just be certain you consider the negatives, as well as the good reports.

Donna

[PlainJane]

As ICNDonna mentioned you have to consider the negatives as well. I can tell you personally about a huge negative and that is not getting proper treatment when you have Lyme disease.

Yes there are risks with longterm antibiotic treatment: candida super infection, antibiotic resistance, etc (and these risks - candida at least- can definitely be minimized with appropriate antifungal treatment). But these risks in my opinion do not even compare to the nightmare that is chronic untreated Lyme disease. Honestly nightmare is the most appropriate word to describe it. Unless you have been through it you don't know how bad it can get.

But Donna is right you need to consider both sides of the treatment debate (the positive and the negatives). But don't forget that there is a lot of hype surrounding Lyme disease and there are a lot of websites devoted to trashing longterm antibiotic treatment. When you read these sites though you have to consider all the political issues surrounding Lyme disease diagnosis and treatment. To put it bluntly it is a money issue. In the US insurance companies don't want to pay for costly longterm treatment so they say 1 month of antibiotics is enough. But they have taken it even further to intimidate, harass and punish doctors who do provide longterm treatment. Anyway, I don't really want to get into it all because frankly right now I am sick of the hype! I am like most patients - I just want to get better and don't want to get sucked into the whole treatment debate mess. Unfortunately that is not possible. As soon as you start doing your own research you realize just how closesly connected the words "lyme" and "controversy" really are.

And I totally agree with Martha that you have to do your own research. And thanks to the internet and sites like this one you can learn a lot! I would be no where without the internet. I would still be stuck without a diagnosis.

~plainjane

[meg31]

thanks plainjane
I didn't realize there was so much controversy surrounding Lyme disease. The idea of Lyme didn't even cross my mind until recently and I am getting tested tuesday. I really hope Lyme isn't the culprit because from how you describe it, it is sounds like a mess trying to get treated properly. I wish you the best of luck and I'll keep you posted. Thanks for your comments!

-Meg

[PlainJane]

I didn't mean to be all doom&gloom! It's just that there is a lot of controvery and it's a miserable disease. However, tons of people get better from it and move on with their lives.

Good luck with the testing. Take care.
~plainjane.

[mich2604]

Hey Meg,

I also have lyme. In the blink of an eye my life as i know it ended in August 2005 while on vacation. I was overcome with an odd sensation, felt dizzy, sick, tingly....so strange when moments before i was fine, normal. For a week after, i had the neck pain, head pain and dizziness.

The bladder symptoms did not start until october 2005. So, i had other symptoms before the IC set up camp.


Ive also struggled with candida........and I avoid anything real starchy....i mostly eat chicken and veggies, pears, almonds, and brown rice ocassionally.


I was bit by a tick in spring 2000.........and really looking back ever since then I have been sick, but with long periods of wellness. It was a horrible bought of bronchitis that I believe triggered the lyme again, and this time my body could not fight.

My doctor is now treating me for a strep infection that is in my bladder and GI tract.

There is so much drama around lyme that I usually try to forget about it and just focus on getting better.