Infection and IC...my thoughts

[meg31]

Hi All,

Well, I haven't posted in a LONG time and I'm sorry for that. I read some of your threads and am so happy to hear that many of you are feeling better (Holly and Aline....I hope you continue to feel well!) Your stories are not only uplifting, but educational for people trying to make sense of their illness. I realized just now that, for the most part, people posting/searching on this site are not feeling well. And often, people who start feeling well seem to drop off these boards, leaving people to believe that everyone diagnosed with IC is doomed to be sick forever. So I'm happy to see so many positive posts and wanted to add my own.

IC is such a vague term, and I belive it can mean something different for each person. I feel that it doesn't define a disease at all, but just summarizes symptoms. The cause for each person is individual. For me, I have discovered that my causes have all been infectious in nature. I found out I have Lyme disease (probably for about 7 years now), which has depleted my immune system dramatically, leaving me susceptable to infection. As a result, I got recurrent bladder infections. Because of this, I was treated with long-term antibiotics which helped the bladder infections, but caused me to develope systemic fungal and yeast infections (which also irritate the bladder). It's a vicious cycle. I think anyone who has an immunodeficiency or some suceptability to infection (known or unknown) can enter this cycle.

Right now, I am trying to stop this cycle by slowling decreasing my antibiotics and increasing the use of natural antifungals. I'm eating healthier and trying to exercise (sweating helps to get rid of toxins). Grant it, my exercise is limited to brisk walking (I can't run like I used to) but it helps both physically and emotionally. Overall, I have improved dramatically. You don't just wake up one day and say "I'm cured!" (unfortunately). But I know I don't ever want to feel the way I did a year or even one month ago.

I'm so happy that more and more people are willing to accept the idea that IC symptoms can be caused by infections. For those of you getting broth cultures and taking antibiotics, good luck and be patient! I wish you all the best and I will post more frequently with (hopefully) more success.

Meg

P.S. I noticed some of you take garlic pills. I started these about 6 months ago and they have helped tremendously with my yeast infections (along with probiotics). So if you (and your significant other :)) can stand the garlic breath, I highly recommend it!

[Anthrop42]

Thanks for the positive message Meg & I hope you continue to get better. When I first came down with "IC" for lack of a better term, a lot of the information on the Internet & stories of pain put me in a huge depression. When I started finding success stories & reading about broth cultures, alternative therapies, etc., then I got my fight back & realized there is hope.

After over 6 months of antibiotics, I still have an infection, but its getting better all the time.

I totally agree with you about exercise. Its extremely important for general health & in healing the body. When I was having bad flares & bladder cramping, going out for a walk would actually alleviate my symptoms. When I get lazy & stop working out, I can tell my level of health starts to decrease.

Aline
P.S. I use Oregamax (mix of Oregano, Garlic, & Onion - my husband can smell it for a little while after I take it, but the smell seems to go away pretty quickly).

[jen74]

This is so confusing with the debate over wheter IC is caused by infection or not. I say I believe it is possible since the doctors do not really have a clue as to what causes IC, only their opinions so far.
The bad thing is, most doctors do not believe in the infection part of being the cause of IC. I just went through this with my urogyne, and he said he does not buy into that. He said if this were the case, then alot of his patinets would be cured by now. I just dont know. He claims that we all have some bacteria in our bladders naturally, everyone does he says.
He also said alot of his patients claim their IC started because of antibiotics, so who knows. This is just so confusing.
Jen

[MarthaF]

Just one comment, Jen, on antibiotics. Most doctors do not order broth, or another type of extensive culture, so they do not know what species the patient has and therefore which antibiotic is best. We have never said "IC is an infection and all you have to do is take antibiotics". There is a procedure to follow very carefully and it includes confirming there is (or are) bacterial species present, and if so, what the sensitivity test shows. Then there are other things ( such as antifungals) that should go along with treatment and it should be monitored. And the length of time differs and there are measurements to know whether the antibiotic is working.

In other words this could be a type of UTI with a kind of bacteria that is not commonly found by the 48 hour agar plate and hence requires a different treatment. It may be intracellular and not just floating in the urine and easy to "cure". It could be in a biofilm (see Dr. Scott Hultgren's work on "pods" in the case of E.coli). Biofilms are a big focus in the case of infections today all through the body (BV is often a biofilm). So we are not talking the ordinary UTI or common urinary bacteria (i.e. E.coli). And there are many urogenital bacteria like ureaplasma and mycoplasma that are hard to culture and require a different treatment, yet can cause urinary symptoms. And Lyme is famous for affecting the bladder.

The field of bacteria and urogenital infections is a huge field that has not been adequately researched. Chlamydia is common and is missed in many patients. Lab testing is critical in diagnosis and I certainly do not advocate just throwing an antibiotic at urinary symptoms. BUT search out the best testing you can find. Quest and LabCorp both have more extensive tests on their menus that I think many doctors do not realize. You can find them yourself on their websites if you search on "cultures, urine". We know the Quest test is #3021A. LabCorp calls theirs "comprehensive". The EPIC study found over 50% of the IC patients say their symptoms started with a UTI. How can they just dismiss bacteria as possibly being a factor with that statistic?

If there are symptoms AND bacteria UTI should be considered. And bacteria should not be ruled out as being present WITHOUT THE BEST TESTING THE LAB INDUSTRY HAS TO OFFER. Is your doctor willing to research this for you when his own test does not reveal any bacteria and yet you still have symptoms? Is your doctor using the best testing any of our big lab corporations have to offer? Or the best a hospital lab has to offer? My doctor was willing to ask his hospital lab to let my culture grow for 7 days before ruling out the presence of bacteria, and to report ANY level of colony count.

Lab testing is scientific and we need the best available. Hopefully doctors will respect the finding of bacteria as a possible cause. As Meg points out there may be other reasons our bodies are susceptible - immune system, hormones, genetics, trauma, etc. More research needs to be done. This approach is not based on guesswork but is based on as much scientific evidence as is available at this point. We are far from having all the answers but we must start somewhere with some openness to the possibility. Molecuar testing may be the wave of the future as it is with many diseases. But Dr. Barry Marshall persisted with his finding of H.pylori in the case of stomach ulcers and we must persist in the possiblilty of a bacterial association in chronic bladdder symptoms until someone can find another cause. No one has been able to rule it out.

Martha

[PlainJane]

Meg,

What treatment did you do for the Lyme disease? I have been diagnosed with Lyme too. What are your major symptoms?

Erica

[marysxx]

What have your cultures revealed?Have you heard of anyone having these tests done? And where they treated succesfully. Thanks. This is a quick reply to Martha

[meg31]

Hi Erica,

Right now I'm taking 100mg Minocycline daily with 30mg Benicar. Benicar is an angiotensin II blocker that helps weaken the bacteria and potentiate the antibiotics. This is similar to the marshall protocol but much less intense. My doctor belives in the theory behind the MP but not the extreme dosing they recommend.

I've also been on amoxicillin for about a year now. I have been taking it for the bladder infections but it may have some effect on the lyme disease. Who knows??

My main symptoms are joint pain (jaw and knees), body aches (neck and legs), headaches, swelling of extremities, loss of feeling in my hands and feet, and of course the bladder pain/irritation (which is probably the most frustrating of all of the symptoms!)

[ICNDonna]

I am taking benicar for high blood pressure. I was switched to it when I was recently diagnosed with diabetes. It lowers blood pressure by relaxing the blood vessels to allow better circulation. It comes in 5, 20, and 40 mg. I am on the 40 mg. tablets.

Donna

[meg31]

You're right, Benicar is mainly used to treat high blood pressure. So I should note that you have to monitor your BP closely if you are on this for Lyme disease. I have generally low blood pressure to begin with so you have to start off at really low doses so you your BP doesn't drop. I had to gradually increase my dose over the course of 3 months to avoid problems. This was a scarey concept for me when I started but now my BP is pretty stable.

[PlainJane]

meg,

thanks for answering regarding your treatment. my doctor wants me to start iv rocephin as soon as we can get it scheduled to have a line put in. the first two picc line attempts were failures (meaning they couldn't get the line in) so i have to get it done in the hospital.

erica