Disclaimer: Nancy does not proclaim to be a medical authority. Any treatment
options or medications should be discussed and monitored by your physician.
A lot of people ask how I think I ended up with IC in the first place. What
treatments did I try? How bad was my IC? What "exactly" did I do? And loads
of other questions!
My IC first started with recurrent urinary tract infections. I was 32 yrs
old. I had never had uti's before in my lifetime. My mother had recently had
a stroke and was released from the hospital to my care. The hospital failed
to tell me that she had a urinary tract infection from the catheter while in
the hospital and had apparently been released with it without notification to
me or any medication to give her. Since she was paralyzed entirely on one
side, I was lifting her to the potty chair, bathing her, etc. And there were
bowel and bladder "accidents". I thought that I was being extremely careful
to sterilize everything including my hands, etc. But somehow I must have
passed the infection on to myself. Within a couple of weeks I came down with
my first urinary tract infection. Within that time I had noticed the
infection in my mother, had cultures done and she was treated (apparently
successfully) with antibiotics for her uti.
So here I was, broke at the time with no medical insurance and never having
had a bladder infection before. When the symptoms first came I tried drinking
a lot of water etc. and finally went to the doctor after about a week of
severe pain. They cultured, found bacteria and gave me antibiotics to take.
Not having been through this before I thought it would simply go away and
that would be the end of it. However several months later (I don't remember
now just how long?) I had another uti. Back to the doctor, cultures,
antibiotics and relief. For awhile. After a few of these episodes I went to
work for a new employer with an HMO and had to change doctors. The recurrent infections continued, coming closer together as time went on. Eventually the cultures began coming up negative. But my doctor believed that I had the symptoms and had sympathy for me so he kept giving me antibiotics. Going from one to the next until one worked. Believe me I didn't go ANYWHERE without taking antibiotics with me. Eventually none of the antibiotics seemed to work and nothing was showing up on the cultures. I had constant pain, burning, frequency, urgency and the feeling of thousands of pins and needles being stuck inside my urethra. I asked to be sent to a urologist and believe it or not my doctor was reluctant. He said that because my cultures were negative he couldn't justify the referral to the HMO! Of course I told him to just DO it and I would take care of the stupid HMO! So he did.
Off to the urologist I go......
Once I arrived at the urologist and he looked over my records, he ordered
several tests. A 6 hr. glucose tolerance test to rule out diabetes, blood
work and an ultrasound. The urologist himself in the office performed a
cystoscopy (without hydrodistension) and a potassium test. (This is where
they fill the bladder with potassium and with water, not telling you which is
which) I reacted significantly to the potassium. Fortunately my urologist did
not believe that hydrodistension was necessary for diagnosis and felt it
unnecessary to put me through it. He felt that it only damaged the bladder
further. Due to the negative findings of the blood work, ultrasound and
Glucose Tolerance test and the positive findings of the cystoscopy and
potassium test along with my medical history he diagnosed me with IC.
He first suggested DMSO. I didn't like the idea of putting a chemical into my
bladder. Or my body for that matter. But the other options were medications;
pain, antihistamines, etc. And I couldn't tolerate those either. Particularly
because of my job in emergency services. I couldn't risk being altered or
sleepy. I couldn't afford not to work or to lose my job. I didn't have anyone
to support me and I had been poor before and didn't want to be poor AND sick! So the meds were out. I also didn't want to catheterize daily with heparin
and/or elmiron so I tried the DMSO. Keep in mind our "healthy" options of
treatment for this disease in mainstream medicine are next to nothing.
Meantime I told my Uro that I would dive head first into researching the
disease and my options. I held fast to the opinion that IC (at least mine)
was bacterial in origin.
He was happy to have me do the research. I could tell that he felt sad that
he didn't have more to offer. I set off to study everything on uti's, ic, and
anything related to urinary tract organisms as well as some that were not.
Everything that I studied just reinforced my idea that IC was bacterial in
origin. I searched medical libraries at Stanford University and UC San
Francisco. I bought a computer and got on the Internet (back in the early
days!) Though I still felt that it was bacterial, I couldn't find any doctors
who truly believed it or knew how to treat for it since the cultures were
negative. I found studies that showed the possibilities of bacterial
involvement by Dr. Gerald Domingue of Tulane University. I also found a lot
of information in a book by Lida Mattman on cell wall deficient bacteria
called "Cell Wall Deficient Forms - Stealth Pathogens". Once on the Internet
I posted a message to a Prostatitis forum regarding the infection "theory"
and received a nice reply from Brad Hennenfent (who later went on to found
The Prostatitis Foundation) He gave me the names of two people. One was Dr. Jean Louis Durier and the other was a microbiologist, Dr. Paul
Fugazzotto. I first tried to contact Dr. Durier for information on his studies. He was kind enough to speak with me and to fax me a copy of his studies. My Uro and I discussed it and opted to give it a try. I started with Flagyl and
immediately noticed some improvement. However as time went by I had to
increase the dosage to keep the same level of improvement. Meantime Dr.
Durier was proving hard to reach and my Uro was concerned that he wouldn't be able
to keep in contact with him for guidance.
I then contacted Dr. Fugazzotto. He advised me that he could culture
organisms that he felt caused IC and that he would also do antibiotic
sensitivity testing to find the proper antibiotic to use. My Uro felt more
comfortable with this and I shipped off my specimen for culture. Dr.
Fugazzotto found Enterococcus and advised me on antibiotics and dosage.
My doctor prescribed the antibiotics. I began to feel better within a couple of
weeks. I did have a bout of diarrhea that in the end was caused by a yeast
problem in the bowel. But not after concern over possibly having Clostridia
I gradually got better and better. I had ups and downs and the symptoms would wax and wane. Ultimately I found that yeast problems contributed greatly to my symptoms and could mimic the symptoms of IC completely. I began to treat aggressively for yeast. I certainly believe that yeast played a significant role in causing many of my autoimmune symptoms such as fibromylagia, chronic fatigue, mitral valve prolapse, irritable bowel, etc.
I treated with antibiotics and herbal antifungals and probiotics. I stayed on
a very strict diet for yeast. I took lots of vitamins. All of which I had
studied extensively. I had taken vitamins all of my life and when I was very
sick I didn't even feel as if I had taken them. I'm sure that I wasn't
absorbing them properly due to my body being "toxic" and poor colon health.
I was on antibiotics for a year. The last six months was a small maintenance
dose. I don't like to discuss dosage and types of antibiotics with people
because each person is different and what works for someone else might be
different than what worked for me. But I do believe it is important to find
out what bacteria you are dealing with and what antibiotic is proper to use.
There are other things that I did during treatment such as switching to
eating only meats without hormones and antibiotics and organic produce,
coffee, etc. I avoid chemicals and use only natural cleaners and chemical,
scent free, dye free, personal products. Chemicals in personal products and
fragrances can severely affect the immune system and should be avoided. It
took a year to get rid of the infection and about another 6 months to get a
good handle on the yeast problem. It took approximately another 6 months to
really get rid of the yeast problem. During antibiotics I really just worked
on controlling the yeast.
Currently I have been IC free for 5 years, completing antibiotic therapy 7
years ago last December. I currently can eat pretty much anything that I
want. I no longer have any symptoms of IC including frequency, urgency and
pain. I can have sex without any problems. I pretty much eat whatever I like
though I still eat healthy and avoid lots of sugar. I don't want to go
backwards! But I can have sugar and alcohol occasionally which is all I ever
really did in the first place. I am also currently treating allergies to
foods, vitamins, substances, etc. with a technique called BioSet. These are
allergies that I have experienced most of my life, even before IC. When I was
really sick with IC these allergies were a lot worse. They got back to a pre
- IC state after treatment. I'm now working on getting rid of them
permanently. I can now participate in any sports or activities that I wish. I
garden, walk, jog, snow ski, golf, and have spent a year remodeling my house. (it's not done yet!) Oh and yes, I work three jobs!
I have my life back. I hope this helps you get yours back too.