Cystitis Patient Answers
My urologist told me that the internet has all the information I need to make informed decisions on any treatment – Here is a series of articles with information you may not find online, about IC:
Symptoms called IC can come from anywhere in the body.
A holistic approach to diagnosis and treatment is necessary.
Medical profit for specialists harms us all.
There are two parts to this document, my own story, Treatment for a diagnosis of IC by urologists, and another article about the larger picture, the corrupt American health care system as a whole. The big picture is presented by a doctor in a 2018 article in the opinion section of the New York Times: Dr. Jamie Koufman, “The Specialists’ Stranglehold on Medicine”,

First, my own story, one example of the “Specialists’ Stranglehold:”

Following urological “treatment” for 5 years, I suddenly came down with two chronic and very painful symptoms. This urological “treatment”, I would discover, had caused these symptoms. After 6 years of enduring this pain, I would find help from Dr. Howard Lutz, an internist who practiced “Preventive Medicine,” which looks for the cause of symptoms. The American Urological Association, AUA, says they don’t know what causes our symptoms, and that they treat symptoms. After interviewing dozens of people like me, and surveying more than 1600 women, we have discovered that the only way to get relief is to find the causes of our symptoms, which will indicate the right treatment. I submit to you my own story, as an example, and James’, Anne’s and Susie’s stories, as examples, on this website.

Advised by 3 urologists, following one bladder infection, that I needed dilations of the urethra, I had 10 dilations, and the 10 courses of antibiotics that accompany these surgeries, from 1970 to 1975. They told me that my urethra was “too narrow,” and needed widening. Then, I woke up one morning in 1975 with two symptoms that felt like torture – they were unrelenting and extremely painful. One symptom was severe bloating and pain in my intestines, with every bite of food I ate. The second was what urologists call “urgency and frequency,” or feeling like one has to urinate every second, day and night, no matter how empty the bladder. The intestinal pain would last 6 years, until I found an internist who practiced “Preventive Medicine,” and the second symptom would last 30 years, until I found an allergist/clinical ecologist. Both of these doctors looked for the cause of my symptoms, gave me the appropriate treatment, and the symptoms finally relented. Most of the urologists, internists and other doctors I saw treated the symptoms, which accomplished nothing. The cause of the intestinal pain was an overgrowth of a fungus called Candida albicans, caused by the antibiotics that went with the dilations. The successful treatment was not eating sugar, and many other foods that I’d become allergic to. The cause of the urgency and frequency was a Herpes II virus, which was suppressed by L-lysine, which is found in milk products.

First, the diagnosis of my severe intestinal pain. In 1981 a Greek-American friend living in Washington, D.C., who I had gotten to know while I was living in Greece, called and told me she’d seen a doctor with a specialty in Preventive Medicine on a local TV talk show. She insisted that I come and see him. I was desperate and immediately took her advice.

Dr. Howard Lutz was overweight. He looked exhausted and a bit disheveled. But he was a very kind, sympathetic man. I didn’t know it then, but he was one of many doctors who were dissatisfied with the trend in medicine at the time, which was to treat symptoms rather than the cause/s of a disease. He was an internist who spoke out about this, and endured severe criticism from other doctors, in order to do something he believed might help patients more.

Dr. Lutz looked intently from his own exhausted face to mine. He told me, even before testing, that he was quite sure I was allergic to a lot of foods. The second problem, he said, was Candida albicans, a fungal infection in my intestine from the antibiotics that went with the urethral dilation surgeries.

From the literature he gave me, my own medical records that I kept from my visits to him and my memories of those visits to Dr. Lutz in 1981, I have pieced together a description of his approach to disease. In an article in the Summer, 1983 newsletter put out by his Institute for Preventive Medicine, he wrote that he believed food addiction (food allergy, sensitivity, intolerance) and nutritional deficiencies were the cause of many common degenerative health problems plaguing westerners, especially Americans – for example, chronic fatigue, sinus problems, obesity, hyperactivity, arthritis, skin problems, high blood pressure, depression, confusion, memory loss, fluctuating feelings of illness, stomach and bowel problems, insomnia. Dr. Lutz was trying to identify the causes of these modern medical problems, not just treat the symptoms.

Sensitivity to foods may be caused by many things, Dr. Lutz explained. Our bodies never get a break from foods as they did when we ate only what was in season. If you ate apples for two months in the fall, your body would cleanse itself of this food. But now, we can get apples – and most other foods – year round, and the body tends to become sensitive to the things it is exposed to almost every day. For most people, that’s milk, wheat, sugar, corn and its ubiquity in the form of corn syrup in soda and in most processed foods.

Dr. Lutz’s method for discovering food sensitivities was cytotoxic testing, meaning cell poisoning. A National Institutes of Health, NIH, reference: Essentially, white blood cells with more than one nucleus (polymorphonuclear) from the patient’s blood are exposed to about 300 foods. The foods to which the patient is sensitive cause the white blood cells to die. In my own case, I was tested for 228 foods, and the results indicated that I was sensitive to 133 of these, and could safely eat 95. I couldn’t eat wheat or most other grains; the only grain on the list that I could eat was rice. I couldn’t eat milk products, except mozzarella and cottage cheese. And worst of all, I couldn’t eat any sugar – not even much fruit. What was left were a lot of different spices, some herbs, a couple of meats and some vegetables.

It would take me years to comply with this diet. There were two problems. First, as Dr. Lutz explained, I was addicted to the foods I was sensitive to, and second, it was hard to pin down the foods I was most sensitive to. Nevertheless, even partial compliance was very successful in eliminating the severe and chronic pain in my intestine. Candida thrives on sugar and starving the Candida improved my symptoms a great deal.

At this point, I was so happy with the treatment, and the relief from intestinal pain, that I decided to try and help other people, by writing an article for Prevention Magazine about what I’d learned from Dr. Lutz. My article was published in 1983 in the magazine’s column called “Getting off the Treatment Treadmill.” You can find this article at . I received about 20 letters from women who had experienced many different urological and other surgeries, too many antibiotics, and their symptoms had worsened severely. Remember, these 20 letters were the most that Prevention Magazine had ever gotten from readers of on article, but they are just the tip of an iceberg - urologists around the world follow the Treatment Guidelines of the AUA, even in a small, poor country like Lesotho, a mountain kingdom in the middle of South Africa. A woman from this country contacted me when she saw our website, and it was the same story. She’s gotten no help and her symptoms were worse, from the treatment her urologist had given her, the AUA Treatment Guidelines. She did get some relief from not eating any more corn and sorghum, the staple foods in her country, which are now Monsanto, genetically modified seeds and the herbicide Roundup (glyphosate), a poisonous chemical.

One of the letters I got upon the publication of my article in Prevention Magazine, was from a woman in Texas. She wrote:

To continue what Dr. Lutz wrote about and told me about, in an article in the 1983 newsletter titled “Food Addiction” we often reach for foods that seem to make us feel better. Addiction is a good word for it. It was extremely hard for me to get off of the foods I always reached for – candy bars, fruit and all other sugars, coffee, chocolate, wheat, processed foods, milk products. And these things did seem to make me feel better at first. They were my “comfort foods.”

Before I was able to completely comply with the diet Dr. Lutz recommended, constant pain made me exhausted and depressed and I habitually compensated with a candy bar, a cup of coffee, or a piece of fruit. And I felt better - for half an hour. And then I would feel a deeper fatigue, a worsening of “frequency and urgency” and intestinal gas. I remember once getting off the subway in Washington Heights, in Manhattan, after work, and buying an apple from a green grocer on the street. I relished that apple, but by the time I got home, just about 5 blocks, my bladder symptoms were much worse. I remember thinking that it was not possible for an apple to cause that kind of pain. And yet I noticed that this happened every time I ate an apple, for years. (Apples are also constantly sprayed with pesticides, which are toxic. This is something that does not seem to be taught in medical schools – perhaps because surgeries are far more profitable than finding a cure for the symptoms by finding the cause of the symptoms.

The body adjusts to this toxicity for a while, Dr. Lutz said, but finally is stressed by the foods we are sensitive to, which are toxic to us, and to other “assaults” and can no longer cope, resulting in disease. I remember well the analogy he used. He said the body is like a cup. We fill it up with toxins of various kinds and it copes - until the “cup” overflows, and this overflow causes the disease. Another allergist I saw later in New York, and an Ayurvedic doctor used the same analogy.

Cytotoxic testing, I believe, was not foolproof. I must qualify this last statement – I cheated so much at the beginning of this diet (for the first 20+ years), that I was never sure what I was reacting to, and therefore didn’t really know if cytotoxic testing was accurate or not.

The other way of determining sensitivity to foods was an “elimination diet” i.e. eliminating the standard foods I ate every day, or often (again, sugar, wheat, milk products, coffee, tea, chocolate, alcohol. This left one with a diet like rice and green beans. This limited diet had to be carried on for at least 4 days. The theory was that it took the body 4 days to eliminate a food from the body. When the symptoms disappeared, it was safe to begin adding one more food at a time, again for four days each If symptoms did not reappear, that food was probably safe. And so on. Also, one had to be careful not to eat a food for any more than four days at a time, and then to refrain from that food and all other foods in that same plant family for another 4 days to give the body a rest. This was called a “rotation diet.” It gets to be a very complicated spreadsheet. It was also recommended that one eat only the foods in season at the time. I barely managed my routine of work and home. And of course there was the addiction. I was terrible at the elimination diet.

In addition to sensitivities to foods, Dr. Lutz diagnosed as an overgrowth of Candida albicans, the fungus that I was already familiar with. Twice in the early 1970s I had yeast infections - Candida in the vagina. My gynecologist told me that yeast infections were caused by antibiotics. A healthy vagina had many living microbes, which operated in a healthy balance or détente. Antibiotics caused a die off of some of these essential microbes in the vagina, and the Candida multiplied. So I got it right away when Dr. Lutz told me this is what had happened in my intestine. Sugar had to be eliminated from my diet because Candida thrives on sugar, in all it’s forms, including other carbohydrates, he said.

My mother had served wonderful, balanced meals but I learned very young how to make the new cake-mixes. Between meals I feasted on ice cream, and candy I picked up at the small grocery my mother sent me to when she needed a few things. I charged it, along with the butter and milk. At the time I had serial earaches, treated serially with the new wonder drug, sulfa – an antibiotic - by my genial pediatricians. And I was privy to one of the millions of unnecessary tonsillectomies had by children of the middle class for decades, spotted in 1934, and continuing unabated for more decades. This was another surgery and more antibiotics. I have wondered if sulfa set the stage by creating the room for more candida which in turn was fed by a culture of soda, candy, cake. It may be that the serial antibiotics that went along with the serial dilations tipped the balance of a Candida overgrowth begun when I was a child. Doctors, including urologists, knew that a lot of antibiotics caused Candida albicans, but dilations – surgeries, with many surgical CPT codes – required antibiotics. None of the urologists and internists up until I’d saw Dr. Lutz had taken any interest in the dozens of antibiotics I’d had up to this point, including the ones with the dilations. Dilations were justified as a way of preventing bladder infections – and I had only two infections before the dilations were advised.

Regarding antibiotics, noone asked me whether I’d taken antibiotics as a kid. McLean and Emmett pointed out in 1969 that “Next to the antibiotic therapy, the most common treatment” for symptoms of urgency and frequency, is dilations of the urethra....Some patients have infections…Others have been treated empirically….with…antibiotics ..without the urine being examined.” That is, Antibiotic therapy was the most common treatment for chronic cystitis, whether there was an infection or not.

Dilations, however, were profitable if not scientific. Later I would learn from reading a lot of medical literature, that doctors had known since the beginning of the use of antibiotics, in about 1942, that antibiotics caused the overgrowth of Candida.

My new diet was difficult because of food addiction, because of the difficulty of finding out what foods were causing the pain, and also for a third reason - socializing. Being with family, friends, colleagues is often centered around food; we eat and drink together. This is incredibly awkward with the kind of diet I was supposed to be on. Home, café, restaurant, holidays, lunch break, after work. I wasn’t supposed to eat the wheat (bread, pasta), milk products (milk, cheese, ice cream, etc.), most of the foods that contain milk or wheat, the meats you’ve grown up on (beef, chicken), eggs, processed food (supermarket cereal, and most other supermarket products), sugar (all desserts! and fruit!), and then of course the drinks – coffee, tea, alcohol. That leaves a couple of meats and green leafy vegetables, roughly. Agonizing temptation for me, and often incomprehensible to friends and family. Trying to explain it to my husband, my children, other family was awkward and often wasn’t believed.

My husband had a hard time with the whole thing. Who wouldn’t? For everyone, not just him, it was a diagnosis and treatment that was not mainstream – to say the least - at the time. I became extremely conscious of everything that wasn’t healthy. Mattresses had to be organic – regular mattresses have a whole list of chemicals in them, can even catch fire if too close to an outlet. I wanted to eat organic food – “too expensive,” my husband insisted. “Cancer is more expensive”, I countered. There was a terrible fight outside a Colonel Sanders one time, my young sons standing nervously by. “Don’t say anything,” the older one said to the younger.

Nevertheless, we were grownups. What I regret most is that my husband’s anxiety and my illness, and our own crazy mind sets made us both short tempered and almost oblivious to the fact that our young sons witnessed a great deal of conflict.

And my extended family? There was the time I brought my juicer to my sister’s house, from NY to Phoenix, so that I could juice kale while I was there. She and I were doing pretty well at that point and there was a bit of Norwegian hilarity over the kale juice. But in general, we are a dysfunctional bunch of siblings and we haven’t been the best support for each other.

And friends? Socializing with friends, which usually involves food, was like being an alcoholic frequenting bars, with friends who drink. In this case, friends who eat. They said little, but didn’t get it either. There were times when I ate what I’d just told them I shouldn’t eat, like bread, or had a glass of wine after I had said I shouldn’t do that either. Wine relaxed me and seemed to numb the urgency and frequency, temporarily, But in a couple of hours it would be worse.

In addition to the diet problems, there were a lot of other annoying indignities connected to food allergies and possibly the urgency and frequency. There are no public bathrooms in NY City. So I had to march into restaurants where I had no intention of eating or drinking, march on back to the restroom like I was a customer, and march out. You certainly don’t want to start explaining cystitis. Now there is a card offered by an IC group that states on it that you have a legitimate disease that involves going to the bathroom – all the time. I have not seen them but this is what I understand.

Because Dr. Lutz was in Washington, I later saw two allergists, one on the upper East Side, one on the West side of Manhattan. They told me what Dr. Lutz did.

With all the diet issues, I managed a kind of half compliance, and that half solved half of my problem. The gas and bloating completely cleared up. The urgency and frequency improved only slightly. It would be 30 years before I’d find the doctor who could correctly diagnose and treat that.

I sometimes forget what a difference it made to know the cause of my intestinal symptoms, even though the bladder did not clear up. But it put that symptom in my own hands and made me a bit more hopeful about what I thought was a bladder. I believe I would be dead now if not for Dr. Lutz and a couple of doctors who thought like he did.

Sometime in the late 1980s I began going to the library at the New York Academy of Medicine, the last medical library still open to the general public. The Academy was nearly a palace, with a lot of hand carved wood, intricate carvings of animals in the marble floors of the huge lobby, very high ceilings. I was hoping to find the cause of my “urgency and frequency” somewhere in the urological literature.

The literature about cystitis was mostly about dilation of the urethra – a debate about whether the dilation should be less or more severe. It was continually admitted that dilations were not working, and most of the opinions (there was no science, no random controlled trials) were that they were just not dilating enough. Some of the literature even claimed that the urethra should be cut through almost all of the muscle of the urethra, and would have left many women incontinent. In the 1960s there was another theory, about a Lyon’s ring that needed to be cut to widen the urethra in female babies and children. There was really only one urologist who disagreed, and wrote that “The less we do to these people, the better off they are. This was Dr. R. Zufall.”

This man was correct, I felt. I had no doubt that the dilations and antibiotics had caused both my symptoms.

Years later, I could not find Dr. Lutz. During my initial appointment with him I noticed an empty donut box on his desk and asked him about it. He smiled sadly and told me that he bought a dozen donuts on the way in to work every morning and ate them all before he got to the office. He told me that the donuts were his comfort food, as he had been heart broken when his involvement in some of the early research on margarine had proven harmful rather than helpful. “We thought we had solved people’s heart problems – the cause was butter,” he said. “Frankly, he told me, it’s better just to have a little butter, than margarine.” But apparently the corporations who made margarine and marketed it – a trans fat - were the real culprits.

I asked two internists in New York about a year ago what they thought about Candida in the intestine. They said they didn’t believe it. Yet they did say that there are powerful, damaging to the liver, pharmaceuticals to fight candida in the intestine, and they call it a geriatric problem. The pharmaceuticals do more damage, and don’t treat the cause of an overgrowth of Candida, which requires a special diet.

Treatment for a diagnosis of IC by urologists, is one example of a much larger picture in the American corrupt health care system. The big picture is presented by a doctor in a 2018 article in the opinion section of the New York Times: Dr. Jamie Koufman, “The Specialists’ Stranglehold on Medicine”,

In our next article, to add to the website content, I will tell you about the second doctor who helped me, Dr. Alfred Zamm. He is an allergist/clinical ecologist, who always looked for the cause of a symptom. He would discover that a virus, Herpes II, was causing the feeling that I had to urinate all the time. This is what’s called “an end organ response.” In other words, a symptom in the bladder, can be caused by another condition, like a virus. He knew this and prescribed L-lysine, which is found in milk products. He also wrote about another patient, Edith, who had been told by urologists, after many surgeries per the AUA Practice Guidelines, which had only caused more pain, that the only thing left to offer her was the removal of her bladder. Dr. Zamm prevented this by finding the real cause of her symptoms, and by treating her accordingly – bringing an end to her agonizing symptoms. If you want to know what Edith’s life would have been like had she not found Dr. Zamm and agreed to the removal of her bladder, read Susie’s story on our website,