By Ariana Estelle-Symons, Ph.D., Copyright 1998
From the Kombucha Konnection Newsletter, July 1998
Many of my articles pertain to subjects that are new to me and it's necessary to do a great deal of research and I must rely on the input of others. But, in this case, when it comes to the symptoms of CFS, I don't need to rely on anything other than my memory of the onset of CFS. I never talk about CFS and the role it plays in my life. Call me "Cleopatra - the Queen of de-nial", but I choose not to dwell on it or give it any more credence than is absolutely necessary. I do not say to myself "I suffer from Chronic Fatigue Syndrome." I give it not more attention than I do the fact that I have red hair and blue eyes. Other than my immediate family, and the doctor who discovered it, no one knows that I have been diagnosed with CFS. I must admit that before my diagnosis, that I shared the belief of many - that CFS was not a 'real' disease.
One evening in 1991 I was watching a PBS documentary about the Koala Bears of Australia. The narrator of the program talked about the fact that the Koala sleeps 20 hours a day. I said to myself "that sounds like me - I've got the Koala Syndrome'. Then the next day, driving to work, as I sat in my car at an intersection, I could not make the decision to turn right or left. I burst into tears and just sat there thinking 'this is it - I can't deal with this any longer'. I turned right and drove to the doctor's office. This was not an easy decision for me because for many years I had taken control of my health with natural remedies and nutrition. I had vowed I would no longer be a victim of 'prescription poison' or over prescribed antibiotics or tranquilizers or unnecessary surgical procedures. I absolutely believed that I could 'take care of myself'. But, this was intolerable. It was as though I couldn't get enough sleep, and after 12 hours of sleep I felt as thought I'd been up for days. I attributed my fatigue to depression, brought on by being the primary caretaker of my mother throughout her terminal illness and subsequent death.
When I walked into the doctors office I was sobbing uncontrollably and the nurse took me into an examining room. This doctor had been my mother's primary physician and took one look at me and said, 'well, you're obviously depressed because of the trauma you've just endured with your mother. But, just to be on the safe side, let me do some blood work". He prescribed an anti-depressant and sent me on my way. In a few days he called me and asked me to come back into the office. He told me that there were EBV antibodies present in my blood and concluded that I was suffering from CFS , Chronic Fatigue Syndrome. When I told him that my entire body ached, he said 'that goes with the territory, it's one of the symptoms'. He doubled the dosage of the anti-depressant and told me to 'have a nice day'.
After a few days on the anti-depressants I was worse. The 'brain fog' that I had been experiencing was exacerbated to the point that I simply couldn't think. I was trying to run a business, and I was useless. I felt horrible. I ran a low grade fever every day. Having suffered for years from Rheumatic Fever, I thought perhaps I was having a relapse. The doctor said no, that these symptoms were common with CFS. I really thought I might be dying. It's difficult to sleep when your head aches, your entire body hurts and your throat is sore. When I did fall asleep I would be awakened by 'night sweats'. Every single night I'd wake up with wet hair, wet bedclothes and the feeling that I'd just climbed Mt. Everest. One morning the phone rang and it was my employee calling to see when I'd be in the store. I broke down in tears and replied, 'I can't, I can't think and I can't talk to people. You hold down the fort because I won't be in at all today'.
My first positive act was to ceremoniously flush the anti-depressants down the toilet. I managed to drag myself into the shower, throw on some clothes and off I went to the bookstore. I bought every book they had on CFS. Perhaps that saved my life. After reading for a few hours, I went to the store and spent money I couldn't afford on a juicer. I bought huge bags of carrots and apples. I bought chunks of ginger and bunches of parsley. Each day I took 20,000 units of Vitamin C, 5,000 units of Vitamin E and 50,000 units of Vitamin A. I took DMG (Gluconic acid in capsule form). I took a multivitamin manufactured locally by a naturopath. I also took spirulina and garlic capsules, along with barley grass and lots of echinacea. and ginko biloba. I threw away the HaggenDaas ice cream and the microwave food. In fact, my cupboards and refrigerator were completely devoid of any processed foods. I ate whole grains and every veggie I could get my hands on. I consumed no 'dead' food and no dairy whatsoever.
I began to feel alive again. About three weeks into this 'marathon juice & supplement diet' I was given my first Kombucha colony. Actually the Kombucha was for my daughter who was suffering from a rare form of cancer. When she told me of her increased energy after only 1 week of drinking Kombucha Tea, I began to drink it also. I started with 4 oz a day, and on those 'bad days' I'd drink as much as a quart. After about 6 months on this diet, along with Kombucha Tea, I was feeling better.
I've been drinking Kombucha Tea ever since. I drink no less than 8 oz a day, and if I experience the 'night sweats' and low grade fever, I increase the dosage. I still take at least 5,000 units of Vitamin C, 2,000 units of Vitamin E and 25,000 units of Vitamin A. I take echinacea/goldenseal capsules, blue-green algae, barley grass, Borage oil and Oil of Evening Primrose, plus Vitex 40+, an herbal formula for post menopausal symptoms. About 2 years ago I began to take 3 mg. of Melatonin each night before bedtime. Since CFS wreaks havoc on normal sleep patterns, and since my Pineal Gland (which manufactures melatonin has been calcified since I was forty years old, it made sense to me that melatonin might re-establish more normal sleep patterns. It worked. I sleep for 7-8 hours and wake up refreshed. I take no prescription drugs. I still suffer from Ankylosing Spondolitis, a painful and degenerative spinal disease, but the 'Fibromyalgia' symptoms that came with the onset CFS are no longer the problem that they were five years ago. The 'trigger points' are still there and still tender, but nothing like before..
What caused me to have CFS? I have no idea. My son (at the age of 15) was terribly ill for many months with a disease that simply had no name. After almost a year of going from doctor to doctor, we finally had a diagnosis. He was suffering from mononucleosis and EBV was the culprit. For two years he was a very sick boy, but now at the age of 39, although he seems to have a weakened immune system, he does not have symptoms of CFS. Was his case of 'mono' and my CFS related? Somehow, I don't think so.
I've been lucky. I don't suffer from many of the symptoms that go hand in hand with CFS. I think that my diet and the herbal supplements and vitamins I take boost my immune system. Where does Kombucha fit in? I believe that Kombucha enhances and improves the benefits of the herbs I take. I also believe that by combating the Candida Albicans overgrowth that often occurs with CFS, Kombucha Tea keeps my 'friendly flora' at its proper level. I have NO Candida symptoms whatsoever.
I cannot say that my diet - or - Kombucha Tea will help you or a loved one that suffers from CFS. I can however tell you that I now have my life back. I know people that were on a macrobiotic diet and found no relief from the symptoms of CFS. When they added KT to their diet, the results were obvious and there was no doubt in their minds that it helped them..
Keep in mind that every body is different. The ramifications of CFS are different in each case. Seek the advice and guidance of your health practitioner before you make any decisions. Try to maintain a positive attitude, do the very best you can with what you have to work with, try not to 'suffer with CFS', rather, learn to 'live fully with CFS'. A solid base of spirituality will help you maintain your attitude. Gentle exercise like Tai Chi is often very helpful. Do your homework, learn about this disease and be open to suggestions. There are many avenues of support. Here are a few:
CFIDS Association of America
Charlotte, NC 28222-0398
National CFS and Fibromyalgia Association
Kansas City, MO 64133
There are many services available 'on line'. To get advice on obtaining these resources, and to get plugged into the world of CFS networking, you can obtain the "CFS/ME Electronic Resources" guide via Email . Send the command GET CFS-NET TXT to the address: LISTSERV@SJUVM.STJOHNS.EDU. Or, send a self addressed stamped envelope to:
CFS/ME Computer Networking Project
P.O. Box 11347
Washington, DC 20008-0547
CFS/ME Computer Networking Project
3332 McCarthy Road
Ottawa, Ontario K1V 0W0
There is hope - and you will survive.
Harmonic Harvest Products
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