Wednesday, December 06, 2006

Viruses and CFIDS

Right after writing about how good I've been feeling, I had several days of feeling worse. My kids would say I jinxed myself! Still, I only felt mediocre, not horrible, and I'm back to doing pretty well this week.

Lots of CFIDS research has considered viral triggers for CFIDS starting or relapsing. Dr. Bell summarized it well in a recent newsletter. I've always felt that immune system dysfunction/activation was at the heart of my own illness, in part because every crash (since the very first day) started with a sore throat.

With three of us in the house now having CFIDS, the role of viruses in our illnesses has become even clearer. Shortly after Jamie first became sick, I noticed that he and I would often crash at the same times. Previously, I had assumed that all crashes were caused by over-exertion or stress, but the pattern of Jamie's and my crashes was strikingly similar.

This fall, with Craig now also diagnosed, the three of us went through several rough crashes - at about the same time and with very similar symptoms. It's become obvious that our worst crashes are triggered by exposure to a virus of some sort (lots of them around with both boys in school).

Just this past week, I was stymied as to why I was suddenly feeling poorly again. I thought it might be an approaching storm front, but the barometric pressure finally rose again on Saturday and I felt worse than ever. I commented to Ken that my legs and hips felt unusually achy. Sunday I felt better, but by Sunday evening, Jamie was complaining that his hips ached! This is not a normal symptom for either of us; it must have been triggered by exposure to the same virus. Fortunately, our overactive immune systems quickly recovered, and we're both feeling good again this week. In retrospect, while I was feeling poorly last week, Jamie was struggling with a lot of brain fog during homework time every evening.

I try to avoid offering advice on treatments because I know it's not always well-received. I myself often react negatively to others' advice, particularly claims of a cure or complete recovery. I'm going to briefly depart from my own restrictions, just to mention some immune system supplements that have definitely helped me to improve over time. Certainly not a cure, but I've welcomed any improvement at all, and I'm fairly high-functioning now. While lots of treatments help symptoms, I feel that these focus on the root cause in CFIDS, the immune dysfunction.

By the end of 2003, I was at my worst. My throat hurt almost all the time, instead of only at the start of a major crash. Frustrated that the only medication for immune system "balancing" was unavailable in the U.S. (Immunvir), I conferred with an herbalist who suggested mushroom supplements. Within a month, I felt significantly better, and my sore throats were back to only appearing during crashes. I've maintained this improvement for several years now and still take the supplements every day. There are two good ones available: RM-10 and Host Defense. These are both quite expensive. I found the best prices at Web Vitamins, and my insurance company gives me an additional discount there.

The other immune supplement that has helped considerably is olive leaf. I read an article somewhere that olive leaf had anti-viral, anti-bacterial, and anti-fungal properties and decided to try it (at roughly the same time in 2003). I had required antibiotics several times that year to combat sinus infections and bronchitis, reacted badly to them, and wanted to avoid them. In short, it worked. Since I started olive leaf two years ago, I've only had one sinus infection (this fall). My husband now takes it when he's exposed to a virus or feels a canker sore starting. We treat it like a miracle drug around here! Last month, after being assaulted by so many viruses in September and October, I started taking olive leaf every day (twice) rather than only when exposed to something. I have no idea why I've been doing so well, but I'm wondering if the olive leaf is behind it, especially with more and more research pointing to dormant viruses in people with CFIDS. November was the best month I've had in over four years (yes, I keep track!)

Kind of long-winded today, but I hope that someone out there might be helped by my experiences. Book group tonight - can't wait!

2 comments:

  1. Anonymous4:43 PM

    Thanks for letting me know about the olive leaf. I'll give it a try.

    fogggygyrl

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  2. Hi Sue,

    I was looking through your "tags": CFIDS treatments and came upon this one. I wondered if you still take RM-10, Host Defense, and Olive Leaf? I tried starting LDN again but just can't tolerate it -- taking it day or night -- so I'm looking for alternatives.

    Thanks.
    Toni

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