In the six weeks since I wrote my column for the Summer 1994 issue of The CFIDS Chronicle, an amazing thing happened—my body began cooperating. After four months of downtime, drugs and a new diet, my broken-down immune system finally fought back.
I’m not sure how it happened. Luck? Carnitor? ATP+? Reliv Now? Prozac? Lots of rest and vitamins? All of the above?
Who knows? A month ago I could barely get out of bed and take a shower each day, but now I’m ready to go back to work part-time. I missed being out in the world! I missed being myself.
Although I’m not sure why I remitted, I make an all-out effort during the last few months to be good to my body, hoping it would return the favor. (Fortunately, because my employer has a short-term disability program, I was financially able to wage this war against CFIDS.) Maybe some of the things I tried will help you remit, too. They include:
Even when I wasn’t winning the CFIDS siege, I counterattacked every chance I could. I consider this illness my enemy. I believed that even if CFIDS won a battle or two, I wouldn’t let it win the war. Although I think positive imagery and all that stuff is spurious, I found myself imagining my immune system’s soldiers going to battle in my bloodstream, vanquishing viruses and shoring up cells. It felt surprisingly good. Don ‘t just lie there; fight back. Believe you’ll get better with time.
This was a tough one for me at first; I felt guilty that I was being paid for doing nothing, and aghast that others at work were having to do what I should have been doing. For the first two weeks, the guilt consumed me. Then my husband told me to look at it this way: my company was paying me to get better. When I decided to be as good at resting as I was at my job, resting got easier. I slept when I needed to and lazed around and didn’t do a thing around the house for four full months. My husband and kids rallied around and chipped in to do all the work. Do what you need to do to get better. No excuses. Make recuperating your full time job.
Reluctantly, I cut out a lot of fat and sugar from my diet. I subscribed to Vegetarian Times and developed an affinity for fresh vegetables. I bought a juicer and used it regularly. I cut back my caffeine intake, and I tried to rid myself of a horrible chocolate habit. I began to see what I ate as the ultimate medicine; it didn’t make sense to eat junk food when my body truly needed good things. I didn’t worry about having gained a few pounds, either. I worried instead about getting better. I’ll take the weight off when I’m up to it. Feed your body only good things.
When I had some energy, I added my reporting skills to my arsenal. (I’ve been in the newspaper business for years.) For an hour or so each day, I investigated CFIDS. I read every book in the library on CFIDS. I talked with other CFIDS patients and their doctors. I learned about all viruses, how research is funded and accomplished, how lobbyists can influence funding and policy decision. When I didn’t know what something meant, I looked it up in a medicinal dictionary or called my doctor. I networked with various people involved in the war against CFIDS and asked about their responsibilities; talked with other advocates was heartening and enlightening. Knowledge is power. Learn about CFIDS.
5. MAINTAIN RELATIONSHIPS
Too tired to do research? Join a support group. People there will tell you what’s going on. If you’re too sick to go to the support group meetings, start a “phone group” and telephone a few other CFIDS patients every few days. Don’t forget that you’re still part of the world out there. Stay in touch with others
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6. VITAMIN THERAPY
Researching CFIDS and viruses in general lead me to AIDS treatment newsletters, where I found information applicable to CFIDS. Battling a death sentence, AIDS patients are willing to try anything to boost their immune systems. And researchers all over the world are looking for that magic bullet that will make HIV infection just another illness. In the meantime, newsletters are filled with suggestions, serious studies and silly ideas for battling viral illness. After all the reading and research, I decided to add a few things to my medicine chest.
I was already taking 990 mg. Carnitor three times a day; 20 mg. Prozac each morning; 800 mg. ibuprofen three time a day; 15 mg. doxepin each evenings; 10 mg. cyclobenzaprine each night; 60 mg. Seldane twice a day and two squirts of Benconase-AQ for allergies/nasal congestion; a scoop of Reliv Now in skim milk twice each day; two tabs of ATP+ three times a day; 50 mg. of CoQ10 three times a day; and oral Nystatin for systemic yeast infection. As needed I also used Butalbital (for headaches); Enterex LA (for sinus infection); and Nizoral cream for yeast infections on my skin. I also self-injected myself with 1cc of B-12 three times each week. Whew! Even with a prescription plan, that costs about $225 each month.
I added “Thinkers’ Edge,” a vitamin mineral and herbal blend from the CFIDS Buyers Club (800/366-6056); brewer’s yeast, selenium, germanium, Soya lecithin, 100 mg. B-l, 325 mg., buffered aspirin and Rainbow Light’s “Candida Cleanse,” a concentrated herbal formula with acidophilus and biotin. You call buy all of them from the Buyers Club or your neighborhood drug and/or health food store.
That added another $40 to the monthly “medicine” tab. (Frankly, though, I’m worth it. What’s more important than my health) The book I found most helpful in my search for nutritional information was The Doctor’s Vitamin and Mineral Encyclopedia by Sheldon Saul Hendler, MD. Ph.D. He details the pros and cons of more than 200 vitamins, minerals, amino acids, herbs and other supplements; summarizes the research on each; and suggests possible dosages. He also has specific suggestions for CFIDS patients, as well as those suffering from chronic viral illness. Consult with a nutritionist if you need help. Add appropriate vitamins, minerals, amino acids, lipids, herbs and other supplements to your health regimen.
Get serious about organizing your “medicine.” Mine had been in a big plastic container, the vials and bottles and pills crowding each other and spilling all over my cabinets. After looking through catalogs, I decided to buy a $60 medicine dispenser from Solutions (800/342-9988). It holds a week’s supply of medicine, and four times a day I just push a button and the pills pop out the bottom in a little tray. When I go out, I can take my medicine in a travel container that comes with the dispenser.
Then, to organize all the bottles of stuff, I found the perfect thing for $3.85—a clear, plastic tackle box. I put some dividers in, labeled them and bingo, all my stuff is in one place, ready to go. Each week, I take out my tackle box, load my dispenser and I’m done organizing my medicine for the week.
For a quick trip, Samsonite makes a great little travel pill holder for about $20. Ask for it at your local luggage store. If making the list is too complicated have someone help you.
I also made a list of all the drugs, vitamins and supplements I’m taking; who prescribed them; their individual dosages; where I get them; how much they cost (per dose, per day, and per month); and when I’ll need to buy them next. I have a little calendar near my dispenser which helps me remember when I need what.
Some say exercise is bad for CFIDS patients; others believe it’s helpful. Follow your body’s signals. For me, a walk around the block was all I felt comfortable doing. When I’m up to it, I’ll add more. Keep your body supple with some form of regular stretching or exercise.
One caveat: What worked for me may not work for you. CFIDS patients are notoriously physiologically diverse and they respond to many different kinds of treatment protocols. Don’t self-diagnose or self-medicate. Only a trained professional should evaluate what is best for you.
Talk with your doctor before you try anything new.
I don’t know if any of this actually helped me get better or will help me stay well. But I feel better with a plan of attack. So will you.