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Daniel's Story: A Medical History of My Bout with CFIDS
What follows is a brief description of my personal battle with CFIDS. It is presented with the hope that in my sometimes frantic efforts to deal with the disease, someone might find, if not a bit of humor or stupidity at least some insights that might help them. At the end of my story, I offer a conclusion or two that seems to be working for me.
I was a very physically active man of 62 in generally good condition when I became ill. I was a business executive with a classic type A personality and very poor sleep patterns to match.
In May, 2006, immediately following a bout of stomach flu, a series of episodes of extreme fatigue and mental fog developed which have continued to this day although the symptoms and duration of the episodes have changed somewhat.
The episodes are characterized by deep, debilitating weakness and fatigue. Very often there is a significant loss of cognitive ability, which sometimes includes the inability to find and form words (often extreme stuttering) as well as an inability to walk unassisted due to a loss of balance.
In the overwhelming majority of instances the episodes result in my body collapsing into a deep sleep. For the first nine months or so of my illness the episodes, I call them crashes would last for days. These days they generally tend to last two to six hours.
Post sleep periods are characterized as a general malaise which most often continue for several hours but sometimes as long as a day or two.
The episodes are brought on by physical exertion, stress or periods of intense concentration. The episodes are at their most severe in the afternoons.
The first doctor I consulted said "Don't worry it won't last" and he gave me a prescription of an anti-depressant. In July, 2006 the second doctor I consulted conducted a blood test which revealed the presence of an out of normal range Epstein-Barr virus, but he wasn't ready to label the problem but suggested I may be depressed.
As mentioned, over the first nine months, the episodes were usually of two to four days duration with one to three days between episodes. During the "in between" times I was often able to go about my normal routine although with less strength and energy than I was used to.
In the winter of 2006-2007 the length of the episodes began to shorten to a day or two with no more than a day or two between episodes.
In the late spring of 2007 the duration of the episodes was further reduced to, most commonly, four to ten hours with a day or two between episodes. That pattern has continued until the last month.
During the fall of 2006 I saw an allergy specialist. A D.O. who had some experience with chronic fatigue. Among other things, he recommended vitamin B12 shots which had some effect. He also suggested some supplements to help me sleep but they had little impact on my all too well established sleep pattern.
That fall, I also consulted an acupuncturist weekly over a period of a couple of months. She, too understood the condition and was helpful but not so much so that I thought it necessary to continue after ten sessions.
In the meantime my physician was working to deal with the individual symptoms. Providgil was tried and was of noticeable help, but my insurance company wouldn't pay for the fairly expensive drug.
I was also sent to an ear, nose and throat doctor to try to help me with a chronic sinus infection which I thought was hindering my sleep, but he could find nothing particularly wrong with that end of me.
In early 2007 I was sent to the first of two neurologists who found no abnormalities. The second one, however, recommended a polysomnogram (sleep test). In September, 2007 I had the sleep test and it revealed that I had a mild case of sleep apnea but a CPAP machine was not tested and subsequently recommended until over two months later.
When I finally did begin to use the CPAP machine my average night's sleep increased from less than four hours to more than five hours per night. There was a small, but nonetheless noticeable improvement in my symptoms. Eureka, at last something was really beginning to help.
Although my physician did not recommend it, in October, 2007 a series of eight colon hydrotherapy were undertaken which included a change in diet and the intake of dietary supplements (see attached).
By the end of the second week of treatment a constant tiredness and pronounced loss of physical strength was noticed that extended throughout the day. At the end of the third week of treatment the treatments were discontinued but the physical weakness and tiring continued to intensify. So too, the aforementioned (CFS?) episodes became a daily occurrence.
Throughout November and December, 2007 the episodes became a daily occurrence and usually, but not always, started in the early afternoon and most often lasted until mid-evening.
In December,. 2007 a fasting glucose blood test revealed that I was hypoglycemic so a nutritionist was consulted and yet another diet (my third or fourth) was tried.
Prior to December, 2007 the inability to think of, or fully form, words (stuttering) in speech occurred only during particularly intense episodes. In early December, 2007 that loss became an almost daily occurrence as did the necessity to use a cane, or other support when walking due to loss of balance.
It was not until December, 2007 that my physician first witnessed one of my episodes. He immediately ordered admission to a hospital for observation and additional neurological testing which included in an MRI and CAT scan of the brain, an EEG and a series of blood tests. Needless to say, while in the hospital, I experienced no episodes at all and the tests revealed no abnormalities.
In February, 2008 I tore the Achilles tendon in my left leg on one of the rare days that I felt good enough to try to launch the small skiff I used to use when fishing in Florida bay. Surgery and seven weeks in a cast followed.
By March, 2008 I was asked to consult with a psychiatrist. Her conclusion was that I might be suffering from a very mild form of depression more likely brought on by my transition from an extremely busy executive to a dramatically less intense change in my life. She suggested a trial of an anti-depressant which caused adverse reaction in for the first two days upon which she suggested that it be dropped and no further anti-depressant medication suggested other than a further trial of provigil.
May, 2008 Lyphoedemia was present upon removal of the cast from the tendon surgery and required specific treatment by a physical therapist. During a physical therapy session I became suddenly weak to the point of not being able to stand at the beginning of an exercise. Both my cardiovascular as well as muscular endurance have dropped to lifetime lows.
In May, 2008 still thinking that my chronic sinus infection was keeping me from getting a full night's sleep, I underwent a CAT scan of sinuses. Nothing was found.
That month I also had additional blood testing for elevated levels of EBV and HHV-6 (the Montoya tests). Nothing significant was found.
Early June, 2008 The extreme weakness following any sort of physical exertion continue. Stuttering and speech difficulties are a now daily part of my life. It is common for me to notice tremors in my jaw with the stuttering
During the last week of July, 2008 I flew to Chicago for several days, my first trip in over a year. Crashes, of course, but also very wobbly on feet & stuttering. On return to Florida, very difficult 10 days, rarely leaving the house.
The daily crashes continue unabated. In September, 2008 I met Dr. Benjamin Natelson in his Manhattan office. During my two hour meeting with him he confirmed that I had CFIDS (this was the first time that I was conclusively diagnosed with the disease). He also suggested a mild drug and a strict regimen of mild exercise which is to steadily, but very slowly, increase over time. Lastly, he recommended a strict diet.
His treatment is having a clear impact. My symptoms have noticeably abated. Stay tuned, I will keep reporting back.
What have I learned so far?
- While it may sound like a commercial, reading Natelson's book gave me a better understanding of my condition than any other single thing I have done over the last two years with the sole exception of seeing Dr. Natelson himself.
- My regular physician is a fine doctor and his general course of symptomatic treatment has been well founded. He simply did not know enough about the condition and his method of patient care is not as holistically formulated as that of Dr. Natelson.
- There is not yet a single reference which I have found to provide the knowledge and path towards wellness that I believe can be achieved through this website.