Disclaimer: Susan does not proclaim to be a medical authority. Any treatment options or medications should be discussed and monitored by your physician.
September 23rd 1997 was the day when I got sick with my bladder problems. I thought it was a typical "run of the mill" urinary tract infection. I called my long time gynecologist and he called me in a prescription for an antibiotic, without seeing me. He assumed I had a UTI, based on my symptoms. Well, the prescription my doctor gave me did not work, and my symptoms got worse. I was getting up and going to the bathroom about 20 times a night. The feeling of urgency never left me. I was getting very worried and upset because I could not understand what was wrong with me, and I kept returning to my doctor. I was sick both emotionally and physically. My doctor arranged for me to have a cystoscopy with a local urologist. I agreed to have the cystoscopy done, as long as I was under anesthesia. Fortunately, my doctor agreed because he viewed it as barbaric to have it done while conscious, since he personally had gone through the procedure. The urologist went in and looked at my bladder, and the cystoscopy showed that there was mild inflammation present. He told me that I did not have cancer, the inflammation would go down and to take Pyridium for the next several months. That was it!
After the cystoscopy I went from going to the bathroom 20 times a night, to 40 times a night, in addition to going all day. To top it all off, my elevated stress levels while pursuing my college degree aggravated my symptoms further. I went from doctor to doctor trying to find an answer. Some would say it was stress, and others gave me antibiotics that would not do anything. Finally, I went to the Mayo Clinic, and they told me that I had Levator Ani Syndrome, which is a tightness in the muscles surrounding the bladder. They sent me to physical therapy and put me on Valium. They said that I was depressed and stressed. Well of course I was stressed! I was not getting any better, and I did not know why. I followed everything that they told me to do at the Mayo Clinic, and it did not help much. The urgency decreased somewhat, but I was still in pain. I became very angry and frustrated. My body was falling apart, and I had no answers as to why. I had severe bladder burning, massive frequency, sciatic back pain and joint pain. I have always had allergies, but they worsened during this time.
I continued on in my search for help. In June of 1997, I found a microbiologist on the Internet called Dr. Paul Fuggazotto, who I still have a great deal of respect for today. I sent my urine sample off to him, and the results came back positive for enterococcus. He told me that I needed to be on antibiotics and antifungals for a long period of time, and he stressed that the antifungals were just as important as the antibiotics. Unfortunately at the time, my doctors would only allow me to do the antibiotics and refused to prescribe me the antifungals. So for seven straight months I took the antibiotics Dr. Fuggazotto recommended, without any antifungals. During that time, I switched to several different antibiotics because they were not killing my infection, later I was told that the resistance was due to mercury poisoning. While I was on antibiotics, the frequency and urgency decreased but my bladder pain increased, and I developed a whole host of new symptoms. I feel that a lot of this happened because I was not taking the antifungals. As result of seven months of antibiotics, I now developed severe vulvodynia and multiple chemical sensitivities. My immune system was shot, my liver had had it, and my body totally shut down. I think if my doctor had agreed to put me on the Nystatin or the Diflucan, perhaps the antibiotics may have worked or at least helped some, but that was not the case. So once I got through with the antibiotic therapy, I was an absolute mess. I was not getting any sleep. I had burning tongue and a terrible taste in my mouth all the time. My skin was severely broken out, and I had terrible joint pain. It felt as though my body had just fallen apart on me. It felt as though I were half dead. At the time I worked for an attorney, and one day my boss told me that I was in really bad shape and that I needed to go on family medical leave and get myself well, and that I simply could not go on like this. It was impossible to hide that anything was wrong because I would go to work day in and day out and just cry all the time and sit on ice packs because the pain was so bad.
Next, I decided to fly from Florida to Maryland to see Nurse Practitioner BJ Czarapata for some help. She continued me on antibiotics but weaned me off slowly and started me on Diflucan. The goal was to taper me off antibiotics and kill the yeast I had developed. As soon as I got on her program, the pain got worse because I had a massive die off of yeast. After her program, I had a slight decrease in pain and urgency, but my liver took such a hit from the Diflucan (and antibiotics) that my chemical sensitivities got worse. They got so bad that I would turn the water on in the kitchen and the chlorine from the water would cause my bladder to burn. I was still sick and could not live like this so I thought "OK, now what do I have to do?"
One night l was lying on the floor in the bathroom. I told God that if he did
not do something to get me the help that I needed, I was going to have to kill
myself. I simply could not take it anymore. The "straw that finally broke
the camel's back" was when my 11 year old son was praying one night and he
said "Mom, I just don't understand it, I pray and pray for you and God just
does not answer me. You're not getting any better. Why doesn't God answer my
prayers?" That just killed me, and from then on I knew that I had to do
whatever it would take to get myself better. I became determined to get well. I
constantly researched as much information as I could. I read anything I could
get my hands on to educate myself. I had read about saunas and detoxing, and I
had read about mercury poisoning and chemical sensitivities, as well as a
variety of other topics I thought might help. Things started clicking and making
sense. I read about the liver, and I felt that mine was overloaded.
Detoxification was the way that I was going to get better. SLOW detoxification.
I also began to suspect that mercury poisoning was also playing a role in my
symptoms, however my body was not strong enough to have my fillings removed. If
I had done that when I was so sick, I think my liver would have just given out.
If you are ever thinking about having your fillings removed, think long and hard
about it. Think what kind of physical shape your body is in, if you can tolerate
it, and do it slowly.
I now decided to buy a sauna, so that I could slowly detox the poisons from my body. I went on the Internet and purchased a small portable sauna that looks like a pod for $1,800. I really did not have the money to afford this, but I knew that I could not continue to stay sick, so I purchased it on my credit card. I used it everyday for a month and within those first 30 days, my pain was cut by 40%. I used it for an hour every night. I knew I was on the right track after going through all these other treatments for such a long time without much success, and suddenly my pain was cut dramatically by using the sauna. I became further convinced that detoxing was the answer for me. While I was detoxing, everything I read about happened. I had rashes come up on my back, ankles and wrists that looked like ant bites. They were there for about a month and a half before they went away. Another thing I noticed in this detox process was that my body odor was very strong. This was a result of the poisons coming out of my body. When I first got in my sauna, I could not sweat. That is how clogged my system was. The only place I could sweat was my stomach, but as I continued to use my sauna and get healthier, I gradually sweated more and more in different parts of my body. The more my body opened up and the more toxins that came out, the better I felt. I now believed stronger then ever that my pain was due to serious toxic overload. I began to eat a better diet. I cut sugar out, and I ate fish, organic vegetables and meats. I ate some red meat but I noticed that when I did my skin broke out and there was a strong odor when I went to the bathroom, so I added more chicken, shrimp and fish to my diet instead. I was still unable to tolerate fruits. I also ate brown rice because it was the only grain I was not allergic to. I had to be careful about some foods when I began detoxing, because I still had a lot of allergies. I also could not take vitamin supplements because I was allergic to about 98% of them.
So now I was on the right track, but I knew that I needed something that
would get my multiple chemical sensitivities under control. They were still
going nuts, even though my pain had decreased a great deal. After further
reading/researching, the final thing that I did to bring myself back to the
"land of the living" was to juice fast. I started very slowly and did
fasts only a couple of days at a time. During the first short juice fasts I was
only able to use certain vegetables because I still could not tolerate fruits.
While juice fasting, toxins continued to come out of my body. I also continued
to use my sauna. After about three or four short juice fasts, I got stronger.
Finally, I was able to do a 28 day juice fast and that is what REALLY turned me
around. Again, at first all I could tolerate was vegetables. Within two weeks
into the fast, I was able to add in fruits, so I was really getting better. I
got enough toxins and chemicals out of my system to help my bladder heal. Later,
I was also able to add supplements in to my program since the juice fasting
greatly reduced my multiple chemical sensitivities. Digestive enzymes and MSM,
along with Natren's Dairy-free Bifidonate have been really helpful to me.
Although controversial, another thing I used to detox was coffee retention enemas. You retain coffee in your body for 15 minutes, and it strengthens your liver and helps your body to release chemicals. There is a book I highly recommend called "Natural Detoxification, a Practical Encyclopedia" by Dr. Jacqueline Krohnn and Francis Taylor, MA. It is a complete guide to clearing your body of toxins. They speak about coffee retention enemas as well as many other detoxification methods in this book. I would also like to recommend the following websites for information:
Today, I continue to use my sauna and clean toxins out of my body, and I am almost fully recovered. I now feel closer to God, and physically I am better then ever. I had not been able to run in years due to arthritis, and I now I am able to. I now run 2 ½ miles a day. I also bought a motorcycle and have been learning how to ride it. It is incredible how the detoxing turned my life around. Today. I don't even view myself as sick. I have no frequency and unless I am exposed to certain chemicals, I have no pain. I was finally able to have sex again after three years. I am also able to wear blue jeans again. Before I could not tolerate any pressure what so ever in my pelvic area. Although I practice a healthy diet, I can eat just about anything I want, including spicy foods like salsa. When I was sick, if I had so much as touched a tomato, I think it would have put me in the hospital. I still have some minor symptoms and chemical sensitivities, but I plan to do another 10 day juice fast to gain further strength.
Soon, I hope to be strong enough to have my mercury fillings removed. I believe that they are still a source of toxins for me. My doctor, who believes in alternative medicine, told me that when you have mercury in your body, it makes bacteria resistant to antibiotics, and I believe that was why I was unsuccessful with Dr. Fugazzotto's program. My dentist, who also believes in mercury poisoning, would like me to have my fillings replaced. Even though I have come so far, I feel that I am still not strong enough to do that just yet. I have five fillings to replace and two are cracked and seeping. My dentist did full dental x-rays and said my sinuses are abnormal and should not be showing up as much as they are on the dental xrays. They are so swollen that they actually press down on to my teeth. I feel that eliminating the mercury fillings is the key in my continued recovery.
I am often asked how I think I got Interstitial Cystitis. In my case, I believe that it was a combination of different things. Environmental toxins, mercury fillings, and the stress of trying to be super mom and go to school. I also took birth control pills for 18 years and feel they contributed to my illness.
It has taken a year for me to slowly detox and get better. I must stress that it is VERY important to have patience. Detoxing the body takes time, and healing does not happen overnight. Spirituality, faith, and guidance allowed me to make it. I don't know where I would have been without it. I feel that God allowed this to happen for a reason, to teach me something. I think my lesson was compassion for others. Before I got sick, I was not sympathetic at all when I heard people talk about illnesses. I thought they were hypochondriacs. Compassion was a lesson that I had to learn.
My advice to those still suffering with IC is that you have to learn to believe in yourself, no matter what. No matter how crazy someone might tell you that things like detoxing and mercury poisoning are, you have to stand firm and believe you are heading in the right direction. You have to have discipline, determination, and patience. Lots of patience! Do not to give up hope, and be prepared to work to get better. There are different paths that we all need to take to heal. Don't give up trying to find yours. I feel that if I can get better, anyone can get better because I was really, really sick. If I can do it, anybody can do it! You CAN get well again. May God guide you in your road to recovery.