On this week’s Founder’s Corner of the CFS & FM Research Edition, Rich Carson shares his struggle, and recovery, from CFIDS.
Source: Rich Carson
On The Road To Recovery
Last week I asked visitors to ProHealth’s Immunesupport.com CFS and FM bulletin board what they wanted to hear about in this week’s Founder’s Corner, and their answer was a resounding: “The Rich Carson story.” Although I am happy to share my story, I do not want to give false hope to readers when it comes to achieving a complete recovery from severe Chronic Fatigue Syndrome. My road to recovery has been long and difficult; it has been filled with obstacles and dead ends. But it has also been a journey filled with many small victories – that in aggregate have allowed me to resume work after more than 15 years of total disability.
My story started in August of 1981 when I developed acute onset CFS at the age of 25. Blessed to be diagnosed almost immediately by David Doner, MD, a Santa Barbara internist who will always have a special place in my heart, I began my CFS journey abruptly, with my life’s script in shreds. “Rich” Dr. Doner said, “I think you have something called chronic CMV or chronic Epstein Barr virus… How long will it last? Probably about a year, but only if you take very good care of yourself – avoid stress, get plenty of rest, plenty of sleep, stay away from alcohol, do not over-exercise, get a good diet, and take nutritional supplements.”
I was the first patient Dr. Doner had ever diagnosed with chronic EBV or CMV. What’s even more amazing is that he had never even heard of these conditions before investigating my case. He is a genius.
I became totally disabled from my profession as a stockbroker/investment specialist in July 1987. In between my diagnosis and the beginning of my period of total disability, I started and led one of the first and largest Chronic Fatigue Syndrome support groups in the country. I became an avid fundraiser for CFS research and focused my fundraising on very wealthy individuals, particularly those in the entertainment industry (more on that later). I also became obsessed with discovering what was making me ill, doing everything I could to find a cure, and trying to prevent my life from being completely destroyed by a torturous disease.
I started ProHealth in 1988 as a means of achieving four goals: to discover the cause of CFS; to discover effective treatment strategies; to raise funds for research; and to support my fellow patients by sharing my findings.
I have tried virtually every treatment imaginable for CFS. A partial list would include acupuncture (weekly for five years), Chinese herbs, chiropractic and ayurvedic medicine, massage therapy, exercise, yoga, cognitive therapy, a list of pharmaceutical drugs too long to mention, and virtually every supplement known to man. I have flown to Italy for injections of human transfer factor, meditated for days on end in healing intensives, and received treatment from “energy healers,” naturopathics, rolfers, psychics, and medical specialists of every flavor (including cardiologists, neurologists, internists, rheumatologists, gastroenterologists, infectious disease specialists, otolaryngologists, internists, psychologists, dermatologists, psychiatrists, dentists, orthopedic specialists, and more). You could say that I have been around the block.
The first major turn in the road appeared in December of 2000 when I received a diagnosis of mercury poisoning. I assume that this was the result of an accident in high school when I spilled about 1,000 grams of mercury in my car. My chemistry teacher was never told, nor did I confide in my parents; I was more afraid of getting in trouble than of being exposed to a deadly neurotoxin.
Those lab results were a cause for celebration, because after almost 20 years of chronic illness, I finally had a target to attack. And so began the “mercury detoxification” segment of my CFS story. Almost six years have passed, and I remain on the same mercury detox protocol: The only difference is that my mercury levels are now normal. Yes, my health and well-being began to improve once I began the protocol, and I suspect that mercury and other poisons in our environment play a role in the pathogenesis of a significant number of cases of CFS.
The second major turn in the road occurred when I began taking transfer factor. Many of you know that ProHealth sells various transfer factor products, and because of that, I can not make any health claims about this product and its effect on my CFS. I can tell you, however, that I believe transfer factor has played a significant role in my recovery.
Volumes of research have shown that patients with CFS may be vulnerable to various pathogens that generally do not pose a threat to non CFS sufferers – EBV, HHV6a, CMV, candida, mycoplasmas, measles, coxsackie B, parvovirus, Chlamydia pneumoniae, etc. I do not profess that transfer factor will work for others with CFS, but I am confident that specific types of transfer factor help to support my immune function and keep me free of opportunistic pathogens. I will be happy to discuss transfer factor at a later date.
The third and last major turn in the road happened in November of 2003 when I did the unthinkable for someone who owns a supplement company: I saw a nutritionist to discover how I could get nutrients from my diet (of all places!). I had been hearing great things for years about Santa Barbara nutritionist Dale Figtree, PhD, and I followed her dietary instructions to the letter. Her three-part program is easy: avoid bad foods and chemicals; eat fresh, whole, organic (whenever possible) foods; and, finally, drink fresh vegetable juice daily.
Dr. Figtree turned out to be a godsend, as her program ushered in a new level of health and vitality that I had not known for 20 years. I learned that taking supplements is not good enough for treating a disease as serious and complex as CFS – getting a diversity of super concentrated nutrients from food sources is far more important than I ever imagined. Moreover, it is a lot of work. But it is worth it a thousand times over, so now I am addicted to a good diet and, in particular, to juicing. It is actually a great place to be “stuck,” and I am eternally grateful for the huge improvement in my health and vitality.
I am now able to work again, and although I do not consider myself to be fully recovered, I can see that I will achieve this goal in time. I hike in the mountains, I rollerblade, I can endure long meetings, tight deadlines, and stressful schedules. And although being the CEO of ProHealth is challenging and the stress is sometimes hard on my health, I do endure; I push on, and I feel successful. There are bigger things ahead for me now, namely changing the name that humiliates so many patients – chronic FATIGUE syndrome – to something that will be understood and taken seriously by society and the medical establishment.
The takeaway from my story is this: You can improve your health in amazing ways that you can not dream are possible. But in order to achieve this goal, you will need to play a major role in managing your health and wellbeing. And whatever you do, do not take diet for granted. Supplements are great, but they are no match for the healing your body can achieve when empowered with a diet of fresh organic foods, concentrated vegetable juices, and a lifestyle that minimizes stress and maximizes rest, sleep, relaxation, and peace.
Thank you for your patience in waiting for my story.
ProHealth Founder and CFS Patient