Marlene's Chronic Fatigue Syndrome (ME/CFS) Story
"the next week or so, I came down with a respiratory 'cold'."
I wanted to share my experience of recovery from this devastating illness.
I am an Architect and I love my work, and I live in the countryside. One weekend I visited a friend who lives 300 miles away, and she had a bad 'respiratory cold'. The following weekend I drove about 270 the other direction to pick up something I had purchased. In the next week or so, I came down with a respiratory 'cold'. A man whom I was working with on a project, also came down with a respiratory 'cold' a week or two after I did. Over the next two months, I couldn't seem to fully recover and I went to the doctor because I kept having recurring sinus problems, continual headache, neck aches, and felt very tired and weak. I was given antibiotics, but they didn't seem to help. I went back again, and the doctor checked me for meningitis, but I tested negative. She said all she could find was I had a low-grade fever, but nothing else to explain my extreme tired/weakness, and stated that maybe it was "stress or psychosomatic"... I knew it wasn't, because I loved what I do, and the problems all started with that bad respiratory cold.
Over the following months I started having more problems which included short-term memory problems, my tongue felt 'fat' and I started slurring my words, I couldn't find 'words' when I was speaking, my hands felt stiff and achy
"She said all she could find was I had a low-grade fever, but nothing else to explain my extreme tired/weakness, and stated that maybe it was "stress or psychosomatic"... I knew it wasn't, because I loved what I do..."
so it was hard to hold a pencil and write, I started having sleep problems, and I started having dizzy, near 'black-out' spells (I almost even fell off the toilet one time), and I constantly felt soooo tired and very weak. Then I heard that the other two people who had the 'cold' the same time as I did, had each collapsed and were put in the hospital. That scared me, because I didn't want to end up in the hospital. But I knew I couldn't keep going, so I decided to quit my job for a couple months to recover from this 'bug'.But my illness got worse instead of better. Every time I tried to work part time, I would push myself and then 'crash'. It felt like my body was falling-apart on me, including digestive and IBS problems, and cognitive problems. I lost my savings, my health insurance and went into debt. I was sick for 1-1/2 years when I read a magazine article about a lady who had Fibromyalgia, but had recovered. I thought "Boy, her symptoms sound so much like mine, but without the bad pain". Then I researched about it on the internet, and found I had 10 of the symptoms of CFS/CFIDS. I was excited to finally have a 'name' for my problems. There they were all on one list... all these problems I had, which were seemingly unrelated. But then I was disappointed to read that there was no known cure.
Every time I tried to work part time, I would push myself and then 'crash'. It felt like my body was falling-apart on me, including digestive and IBS problems, and cognitive problems. I lost my savings, my health insurance and went into debt.
I thought about article I read about the lady with Fibro, who had recovered, and I thought "there must be something for CFS too". I took vitamins, minerals and enzymes, and various things I read about...although only noticed a slight benefit from them... mostly from B-6 and Zinc. The enzymes were for my digestive system. I had IBS, ... and Milk Thistle seemed to help that some. I kept a journal of the vitamins and supplements that I took and the foods that I ate, and how I felt for many months... (mainly because I couldn't remember things from day to day, and if something helped, then I wanted to know what it was).Then I read about a Chinese mushroom called 'Cordyceps', which was purported to benefit the liver where ATP energy was formed/stored, and helps circulation. I thought "I need that", so after a few days I went to the Health Food Store. I told the store owner that I had CFS. She told me that her niece had CFS when she was in high school, and she had recovered by taking several herbs and nutritional supplements. The Nutritionist explained to me although they don't know a definitive cause, many people's CFS illness starts with a bad respiratory virus.
She explained that one theory is that the virus puts out a 'lucakine' (sp?) which tricks the immune system into thinking it's fighting a bacterial infection instead of a virus, and when the immune system can't control the virus, then the immune system typically becomes over-active. She suggested an herb, called 'Saventaro' which is a US patented immune-balancer, so whether your immune system is either over-active or under-active, it will help balance it. And Saventaro also has natural anti-viral properties, to help 'kill' the virus that started my illness. I decided to buy it, and I told her I also wanted to take the Cordyceps for circulation and the liver, for energy production.
Each week I felt a little stronger, and during the fourth week my energy level became more constant and my 'brain fog' started to lift.
When I started taking the Cordyceps and Saventaro, I took one pill of each at breakfast and at dinnertime. Sometimes I would take them with lunch too. I noticed a little increase in energy just one day during the first week...and then two non-consecutive days during the second week. The third week I felt more energy every other day, but would 'crash' on the days between. Each week I felt a little stronger, and during the fourth week my energy level became more constant and my 'brain fog' started to lift.
Over the next month my energy level increased exponentially. The sixth week I raced my dog up the small slope at one end of the house... which just months earlier I had had to crawl up on my hands and knees because I was so weak. And by the 8th week, I felt 80-90% improved! I felt like I had my LIFE back again!
After two months, I started working full-time again, and have been working full-time for 4 years now... and without a relapse. And I am now the head of the Architectural Department for a major developer in the area.
A few weeks later I got my old job back! I went back to work part-time for the first few months, because I wanted to make sure I wouldn't relapse. And at this time I reduced the herbal supplements to half dosage. Although my cognitive-thought process was better, I still had some serious short-term memory problems. I knew I wouldn't be able to do well on my job when I couldn't remember things. So after researching on Alzheimer's, I started taking 'Huperzine-A' to help my memory. And within 30 days it helped my memory significantly...probably 80% better!
After two months, I started working full-time again, and have been working full-time for 4 years now... and without a relapse. And I am now the head of the Architectural Department for a major developer in the area.
Sincerely,
Marlene Tuthill
6/09/06