CFIDS 1982-present; 28 years of Hell on Earth
Summer of 1982 in San Jose CA. I got the "flu" and so did a lot of other people as evidenced by an overcrowded waiting room at Kaiser where I finally went hoping for some relief from the incessant vomiting even though there was nothing left to expel.
I was a very physically fit person, healthy eater, no risk factors for illness of any kind. I had a job I loved and had been admitted to law school at Santa Clara University. Years previously, around 1967, I had had "mono" and presumeably recovered from it. (EBV titers tested at 600 times normal around 1990 when I was trying to figure out what was wrong with me.)
I never fully recovered from the 1982 summer "flu" but was so determined, and started out so healthy that, by discarding bits and pieces of my life over the next 6 years, I was able to keep working. I had to drop out of law school after one semester in order to keep working and keep my house. I thought then that laying out a semester would give me time to get up to speed again, but it never happened. I first had to stop the hiking and backpacking in the redwoods that I had formerly done, then the jogging and biking, and dancing all night had to go.
Friends with whom I had done those things fell away, not believing in me, as is so typical in this illness. Little by little I stopped everything else that wasn't work. Stopped going to symphony - couldn't stay awake long enough to enjoy it, couldn't sit still with the joint and muscle pain. Stopped volunteering with Planned Parenthood. Stopped political campaigning and activisim. Stopped everything that wasn't work. My job as a real estate appraiser for a major international bank took all my energy. Finally in January 1989 I couldn't even get out of bed. I had already been searching through conventional means for answers from doctors for 6 years and had only gotten the "you're depressed" BS. I had those usual conversations, ie: Doc: You're getting more fatigued because you've gained weight. Me: No, I've gained weight because I'm so fatigued I can't do much of anything I want to do. People who previously called me Superwoman began to tell me I was a malingerer or mentally ill, but had no answer when I asked them what they thought had changed me so fast and so mysteriously.
So, I've been living in Hell ever since, in many ways. Ups and downs. Lovers and spouses loving me when I'm up, abandoning me when I'm down. Family more or less tolerant, indifferent or ashamed of me, but still "love" me because it's their duty.
I lost my life without quite dying. I stopped looking outside for help or support about 10 years ago. Just came back to it when the XMRV news hit the fan and am so glad I found this forum, no matter how that all turns out!
What I tried that didn't help: All the various hyped supplement routines that cost plenty and delivered nothing more than a few weeks or months of placebo affect, or no affect or bad affects. Antidepressants. Talk therapy ie, psychological counceling.
I applied for disability in 1991 and received it almost immediately - for Depression !! (I believe that one reason for fast approval was that this took place in the state of Wyoming which had just lost a suit accusing it having too many refusals for disability that were later granted, they felt they needed to be more compliant with the law, at least while the higher ups were still watching.) So, every time I am medically reviewed for continuation of benefits I tell them I had CFIDS and I still have CFIDS and they ignore that, look at my medical records, sometimes send me to a psychiatrist for evaluation and find that I am still disabled.
I found that Prozac helped with pain even as it didn't help with anything else, so I kept taking it, after trying around a dozen others. And trazadone for not being able to sleep was useful and helped some with restless leg syndrome until that help wore off. I had a new strep throat about every two months for several years until I discovered zinc, which knocks out the bacteria in the throat and helps keep it from coming back. Since I started taking zinc supplements I have not had strep throat. I lost partial hearing and gained permanent tinnitus due one of the many ear infections that followed the sinus and ear congestion that always went with the strep attacks.
I also noticed that while taking antibiotics for strep I always felt better. So when I read about the Marshall Protocol, I set off in search of a doctor that would support me in trying it. Serendipitously, I was assigned to a shrink who happened to have.....ta da!...CFIDS! He couldn't do the Rx for the MP, but put in me touch with one who could and would. So, I did the MP for a total of almost 2 years, with a break in between because I was feeling SO much better. I went back to Thailand where I had taught English as a foreign language in the 70s and took an intensive course to get certified to do that again and hoping to stay there. Politics and economics put an end to that and I returned and went back on the MP until I was rid of horrible back pain, multiple chemical sensitivities and a few other symptoms, but without help for the horrible fatigue.
What has helped me:
Zinc and vitamin C supplements
NADH (this is a type of vitamin B so maybe those who are helped by vitamin B would also be helped by NADH. If I could have only one supplement, this would be it. It makes all the difference in the world in the amount of energy and stamina I have. I take 10mg/day and take a sublingual tab just before walking or doing other strenous stuff.) (I also read somewhere some researcher's findings on why PWCs all usually alcohol intolerant and it came down to something to do with vitamin B. I am not alcohol "intolerant" but it takes about half as much to get me "loaded" as it once did. As a lover of wine, I appreciate what NADH may be doing for me in this way, as well as for energy.)
CoQ10- I felt intuitively that this was something I needed and subsequent research has borne that out. Dr Klimas recommends it, for heart health. I take 200mg/day
After finding NADH and CoQ10 I also had the good fortune of free massages for about a year and I feel those 3 together got me to a higher level of health than ever, since onset. I think the massage was a way of offsetting really bad, negative stimulus of noise, light and commotion with a really positive stimulus that helped my immune system function a little better.
Diet: High protein, lo-carb works best for me. No sugar or refined flour, a lot of vegetables and fruit. Poultry or fish or dairy, no pork or red meat. Yogurt every day. Chocolate and capsaicin also help with pain and wellbeing. That is, cocoa in hot water, with milk powder and stevia herbal sweetener, no sugar. And chilis and jalapeno powder in a lot of dishes.
Meditation for serenity and acceptance of the here and now, myself and the world I find myself in, and listening for clues to what this illness might have to teach me.
Currently trying to add:
EFT - tapping on acupuncture points to "erase" past traumas and present illness.
LDN - will start that any day now, when the naltrexone arrives
Reading "The Shaman's Body" by Arnold Mindell, for seeing illness as a message and for info on "erasing personal history" that is blocking the fullest enjoyment of the present.