CFIDS Report from Lindsay Kamm, Noel's Mother
CFIDS HISTORY: NOEL KAMM
My 14-year-old daughter Noel had the flu during the holidays in 1995, and in the first weeks of 1996 she seemed to be down more than she was up. It was as if she kept catching colds that didn't amount to anything. We thought it might be her allergies flaring up again. She had suffered from allergies to dust mites when she was younger, and even developed some asthma, but they had not bothered her for a couple years. I took her to our family doctor several times, and he finally said he didn't know what it was and referred her to an infectious disease specialist. She was missing a considerable number of school days and I was growing more and more concerned. I thought perhaps she had mononucleosis.
The specialist interviewed her briefly and learned that Noel was a high achieving student who had plenty of friends. She admitted she enjoyed school when she wasn't feeling so lousy. She explained how she was on the swim team, had put in long hours of practice and was looking forward to the meets, but she didn't have much energy. She told him how she was active in 4H and loved riding her horse and competing in horse shows. He thought Prozac was just the thing for her, and told me he'd had a lot of success with adolescents who felt like she did. He offered to write a prescription, but I said I needed to think about it.
A month later Noel was still sick. I asked our family doctor what he thought we should do. He said to give the Prozac a try and gave us some samples to start her off on a low dose of 10 milligrams. When I asked what they thought they were treating, he said "an overreactive immune system that is a distant cousin to chronic fatigue syndrome."
A week later - April 30 - I found a book called The Doctor's Guide to Chronic Fatigue Syndrome by David S. Bell, M.D. which I read immediately and with great interest. The more I read, the more I knew that this is what my daughter was suffering. I was pleased to have a name for her illness, but disturbed by the dismal prognosis.
A few days later I took Noel to a chiropractor because she was having back pain. In taking her history he asked, "Has she been on a prolonged course of antibiotics or taken many antibiotics over the years?"
I answered, "Yes, she took Erythromycin then Doxyclycline from last April until just recently for acne. Plus, during the years she suffered from allergies she had several bronchial infections and took antibiotics for them."
He had read that overuse of antibiotics was a common element among people who had chronic fatigue syndrome. The chiropractor urged me to be pro-active about natural methods of healing and to look into diet and vitamins. This was excellent advice, but I didn't act on it. I thought the doctors would have a cure.
In May Noel was taking Tylenol around the clock for her joint and muscle pain and doing her best to finish the school year. After one month on Prozac it had clearly had no effect. The doctor who had prescribed it had no interest in seeing Noel again, so I got a referral to another infectious disease specialist in Honolulu who had expertise with chronic fatigue syndrome. He said to discontinue Prozac; his personal favorite was Elavil which would improve her sleep and decrease her anxiety. He diagnosed Noel's illness as CFIDS and told her, "Imagine that your energy is money. You have only so much. You cannot spend it all over the place. SO save it up -go to sleep - and spend it on the things you really need or want. Little by little you put energy in the bank, you'll get better." School would be out in a week or two and we thought that a lazy summer was all she needed.
One week of Elavil was all Noel could take. It made her feel groggy all day and not one of her symptoms was alleviated. I bought new vitamins and started her on "cat's claw" or "Una de Gato," the miracle cure from the jungles of South America. I felt like a desperate sinner, ready to give my money to anyone who would promise salvation.
Early in June I took Noel to a nutritionist. She took a detailed history and suspected a Candida yeast overgrowth may have resulted from the antibiotics Noel had taken. She recommended a diet without sugar, vinegar and dairy products. She prescribed CoQ10, acidophilus, super blue-green algae and more protein. I wish I had followed every word she said to the letter and ignored everyone else.
In July I read The Zone by Barry Sears and began to think Noel's illness could be related to lack of protein. We followed his formulas and food plans to make sure she was getting 14 grams of protein at every meal. But Noel seemed pretty much the same, and we still thought there must be a cure out there. Her doctor said we hadn't given Prozac a fair trial and prescribed a higher dose. I asked about a number of tests that would eliminate other causes of her symptoms and he ordered them. One month later we returned to the doctor's office. He increased Prozac to 40 milligrams and was preparing to leave when Noel complained of the incessant headache that had been with her for eight months. He darkened the room, examined her eyes and recommended she have a CAT scan of her brain. He also advised Noel to be more active. "You have to push yourself. Even when you really don't feel like it, you have to force yourself to exercise. You've become de-conditioned and it's a downward spiral that causes you to feel worse. There's no reason why you shouldn't exercise. All you need is a little will power."
Noel and I looked at each other to acknowledge the craziness of what we had just heard. After we left the office, Noel said, " think he has contempt for sick people."
The CAT scan on August 19 was a huge ordeal, but, thankfully, no irregularities were found. After a few days on the higher dose of Prozac we noted that Noel's face was flushed much of the time and she had more trouble sleeping. I asked a pharmacist friend if those were side effects of the drug and she said they were. She felt the doctor should be monitoring Noel's reactions much more closely and suggested we take her to a psychiatrist.
The psychiatrist agreed that Prozac wasn't helping and thought Noel should try a different antidepressant called Paxil. She tried it the next day but felt so nauseous and awful that she didn't take it again. Noel had been taking "super blue green algae" all summer which we discontinued at this point and started her on some other supplements. She was so uncomfortable all the time and complained that her bed was too hard and her bones felt like they were poking through her skin.
Noel went to the first day of 10th grade and realized she could not go back. I spoke to her counselor who was willing to modify her schedule and provide any assistance possible. I began the paperwork for Home/Hospital Instruction.
The psychiatrist prescribed yet another anti-depressant called Zoloft, but wanted Noel to record a baseline of her symptoms for a few days first.
I took Noel to an acupuncturist who suffers from CFIDS. She did "muscle testing" and confirmed that Noel's weakness was serious and systemic. She mentioned Candida and suggested that vitamins would not help until she'd gotten rid of it. She explained that acupuncture was a slow process and would take a long time. We did not go back.
We were grasping at straws. I made an appointment with a rheumatologist. He gave her a thorough exam and talked about how fibromyalgia and CIFIDS are different ends of the same spectrum. He concurred with the Zoloft prescription and explained that it often works better when you combine an SSRI such as Zoloft with Elavil.
Shortly thereafter I bought When the Pain Won't Go Away which is based on the belief that fibromyalgia is a chronic, lifelong condition that can be alleviated but will not go away. The focus is on modified lifestyle, physical and occupational therapies and symptomatic relief. I had been hoping for a cure, and I was reluctant to think of Noel being "handicapped" for life. But at this point I began thinking in terms of coping with handicaps, building up physical strength, easing pain. I took Noel to a pool a few times, but the walk from the parking lot was too long. I took her for a massage, but her skin and muscles hurt. Noel started seeing a physical therapist who focused on breathing and stretching, but she found the sessions arduous and slept for hours afterwards. She felt no better; in fact, she felt much worse.
The psychiatrist explained that his specialty was managing drugs and he wanted to refer Noel to another doctor for stress management, cognitive therapy and so on. She saw Dr. Wong -one time. She was fed up with doctors of any kind and was tired of telling her story all over again only to be passed on to someone else.
NOVEMBER, DECEMBER 1996
We saw another acupuncturist who was a practitioner of Chinese herbal medicine and an R.N. as well. He advised Noel to eat meat which she started to do after a year of being a vegetarian. He prescribed an "allergy clearing" process which seemed to me totally weird and very expensive. But ... we agreed to go through the whole program.
I had listened to a tape about parasites and all the health problems associated with them. Perhaps Noel had parasites from infancy, since she was adopted from Korea. So I bought into yet another multi-level-marketing product; this one was meant to cleanse the bowels and kill any parasites. Noel took these supplements for the next three months.
The pediatrician who had treated Noel as an infant and toddler called to inquire about her condition. He questioned the CFIDS diagnosis and asked whether we were willing to let him order a few tests to rule out other serious possibilities. He examined her, then ordered some blood work. Noel passed out after the blood draw and slept on a gurney for a couple hours. He then ordered an ultra-sound, CAT-scan and MRI all normal. He thought we should proceed with more tests and recommended vitamins and dietary changes and Diflucan and/or Nystatin for yeast.
We flew to my parents' house for Thanksgiving. Noel had to be lifted up to the plane and she had to sleep in the living room because she could not walk up or down stairs. She had a panic/wheezing attack one evening that was quite scary. She seemed weaker and worse in every way.
Noel had more blood tests and a visit with a neurologist who ruled out brain disorders and had a long talk with her about not letting the illness rule her life, modifying her goals and working towards them. Noel found this kind of advice very disturbing. She would be pleased to have some visible injury or ailment that she could fight. We saw a news segment about a cheerleader who suffered some kind of paralysis, but with months and months of physical therapy and repeated surgeries, was able to cheer again. If only CFIDS were like that. Noel is not lacking in motivation or willpower. She is capable of hard work and perseverance. But nothing she did improved her state, so she was left with simply resting and waiting. Doctors do not tell a patient with the flu to force physical activity, or to make plans and stick to them. They say to rest, don't do too much, give yourself a chance to get better. They did not understand that Noel was like a flu patient, and their lack of understanding hurt her very much. She could not work towards a goal because she could not work. There was no way to build her endurance, at least not that we knew of at that time. Whatever we tried just exhausted her and added to her pain.
We had stool tests done for parasites and Candida yeast and sent them to Great Smoky Mt. Lab which reported no parasites but the highest measurable level (4+) of yeast overgrowth. Noel started taking Nystatin and Diflucan for Candida.
MARCH, APRIL 997
We joined The CFIDS Association of America and I started reading about neurally-mediated hypotension (NMH) in their publications. I also spoke to the psychiatrist about discontinuing Elavil because I had read it was not recommended for people with NMH. He said that was true and also felt it might not be effective for her any longer anyway. So we began phasing out Elavil. Noel took the tilt table test that is used to diagnose NMH. It was a miserable experience for her, but it gave us hope that salt in her diet and a blood pressure medication called Florinef might help her to feel much better.
Noel was still taking Zoloft, also taking Melatonin at night in hopes of better sleep. She was taking vitamins, minerals, acidophilus, CoQ10, buffered salt, Nystatin and now Florinef. It had no measurable effect. Noel had blood drawn to check her electrolyte levels, found potassium low (a side effect of Florinef) so started taking KDur tablets as well. She started drinking noni juice - a Hawaiian tonic. She also had blood drawn for the food allergy test -another fainting episode.
MAY, JUNE 1997
Noel was very motivated to spread the word on May 12, CFIDS Awareness Day. She ordered hundreds of little information cards that she displayed and distributed everywhere. We all wore blue ribbons so people would ask us about CFIDS. She sent media packets to the radio stations and newspaper, and ended up being interviewed by a reporter interested in health issues. Noel appeared on the front page of the paper. It generated a lot of interest and many people called to offer their advice and assistance and, in some cases, their products. I was so proud of her for overcoming her shyness and shame for the sake of educating people, and I thought it was a good sign that she was willing and able to be so pro-active.
Noel met with her pediatrician again and it was very disappointing. She felt, once again, that the doctor neither understood nor believed her. It seems that if medical science has not yet identified a disease, doctors are compelled to tell patients it is purely psychosomatic. Patients then think they have made themselves sick for all kinds of unconscious reasons and begin to distrust themselves as well as their bodies that have let them down and their doctors who arrogantly think if they don't know enough about an illness, it doesn't exist. The doctor mentioned "school phobia" and his desire for a better psychological work-up. In the meantime, he recommended exercise and a good mental attitude.
On May 22 I met a woman who has CFIDS and lives a full, active life. Kellie explained how she had been sick for a number of years, tried everything, and now managed her health and her life through food. She explained how Candida infection leads to food allergies and how you can't get better if you keep feeding yourself things that are toxic to your system. She explained the rotation diet - important because people with such sensitive immune systems can easily develop allergies to foods they encounter too often. The idea is to eat a certain food on one day and avoid it for three days afterwards. Kellie couldn't do everything she wanted to do, and she couldn't eat everything, but she was married, active and happy. I decided it was worth a try.
The next day I bought the Yeast Connection Cookbook and the CIFS Cookbook A few days later we got the results of Noel's blood test which showed that she was allergic to wheat, eggs, dairy, and beans. I saw how all the things we considered good food - bean burritos, tofu and shoyu, yogurt and cottage cheese - had been keeping her sick. On June I we started the rotation diet.
During the month of June, we discontinued the Florinef and the K-Dur as well as the Zoloft. Noel took UltraClear for a month, meant to rid the liver of toxins, and added some new vitamins.
JULY, AUGUST 1977
In July I read Dr. Atkins' New Diet Revolution and realized that, although we had increased Noel's protein and cleaned up her diet somewhat, it was way too heavy in the carbohydrates. His diet coincides with the Candida diet and provides health benefits for people who suffer from CRIDS as well as other chronic diseases. We began Dr. Atkins' Induction Diet on August 1. I started looking into the Atkins Center in Manhattan which treats many chronic diseases through diet and supplements, including IV therapy.
I kept thinking there must be a clinic somewhere that would provide a comprehensive treatment just for CFIDS. I felt so inadequate, getting advice from so many sources, trying to research the different therapies and piece them together to produce the right results. I decided to check out the Internet again, and there I found the Petrovic Health Centre with "Great News for CFS Sufferers." Dr. Petrovic's photo and bio appeared on the screen, followed by the results of his study and testimonials from his patients. The clinic was in South Africa, but I was ready to take Noel there if necessary. I e-mailed Dr. Petrovic right away and heard from him the next day. In a matter of weeks, Noel was taking approximately 100 supplements a day from the clinic in South Africa. After three months, the number of pills was decreased to about 50 per day. She will continue taking these supplements for the next few months as her condition improves.
Noel is now going to school for 4-5 hours a day. She has joined activities at school and has been able to resume riding her horse. Recently she was in a competition for the first time in two years. She is on the stage crew for the school play - moving sets, putting in long, late hours. She has her driver's permit, something she could not even think of doing for a whole year. She babysits, goes out with friends, studies hard, and is living the life of a typical teenager... almost. She has to be careful to get enough sleep and she has to avoid foods that make her sick. Sometimes she has to choose to stay home and rest. But she has a full life with normal teenage issues and plans for the future. We were so afraid this day would never come. Noel continues to gain energy and stamina, and we expect she will be 100% healthy again someday not too far away. Thank God.
L. Kamm 5/3/98
"The Kamms" <email@example.com> Tel: 808 742 1752