Valerie

Dear DMS,
Lucky you to live so close! We live in PA and have an appt with him on Monday, so it's quite a trek for us from here.

I hope you will get his book and read everything on his website and the other sites listed on his for the guai protocol. I also hope you understand that the guai brings up all of your symptoms, at first, and possibly some new ones, and that it takes some time to start feeling better from it. Depending upon how long you've had FM, it can take six months up to 2-3 years before you begin to have consistently good days with it. I'm sure he and his staff will explain all this and give you lots to read when you're there.

I didn't realize I had FM when I started taking it 6 months ago. My daughter was very ill last year and was dx'd with FM in Nov., so I began learning about it then. She has been on it a month longer than me and is doing very, very well -- about 90%, which is 110% for the rest of us because she's only 15. I started taking it at the suggestion of several people who agree with Dr. St. Amand that there is a genetic component to FM, and I had been mentioning all the different FM symptoms I've had over the years -- chronic yeast infections, cystitis, muscle pain and twitches, sinusitis, insomnia, constipation, carpal tunnel, dry skin, weird rashes from nowhere. I can't remember them all. But each of the symptoms I've had were treatable and I had never been debilitated from any of them, other than temporarily. However, in the past 3-4 years, I was becoming increasingly fatigued, having more problems getting good quality sleep, having chronic neck and back pain from a car accident 14 years ago that was getting out of hand, and just generally feeling like there was something seriously wrong with me. I was getting ready to go to the dr. and ask for a complete physical, thyroid, hormones, diabetes, you name it, because I just felt punk.

So, I figured I had nothing to lose by trying it and started the guai at the lowest dose he recommends (300mg twice a day). I reacted immediately. In fact, my first dose put me to bed and I had to nap all day, my carpal tunnel flared, I had itchy-creepies all over my muscles, and my cystitis symptoms erupted again -- lots of urgency, but no fever or pain, so it was weird. But since I wasn't really sick with FM going into the protocol, my reactions have been mild in comparison to those who have had it badly for a long time, and they've been completely tolerable all along. I got too enthused in March, however, and doubled my dose to 1200mg/day, which sent me into a dark depression until a friend realized what was the matter. So, I cut my dose back and felt fine again the very next day. (Learned my lesson on that!)

These are the big improvements I've had in 6 months: no more depression (just plain gone), no insomnia, no yeast infections. Just in this last month, it feels like my bladder has grown to where it can now hold gallons instead of teaspoons, which is a great relief -- I haven't done this well with it since before I had my kids. My back pain disappeared 2 weeks after I started taking guai and I can't seem to do anything that makes it come back. My energy is fantastic. I've actually started jogging again and really enjoying it, which is so nice, because I'd lost the ability to tolerate most exercise. My dry skin is gone. I noticed the other day that I'm back to running up the stairs in our house 2 at a time, instead of avoiding the stairs. I don't fall asleep every time I pick up a book or sit down to watch tv. And the best part is that I have the feeling of being healthy and strong again. I suspect that I was on the verge of my first giant flare and could have ended up in very bad shape if I hadn't started the guai. Now, I'm sure that's all averted, as well as the osteoarthritis that Dr. St. Amand believes is an eventual outcome of FM (which he also believes is degenerative).

I am what they call a "low-dose/fast-responder," which is good in the sense that it means I have cleared up rapidly. Other people have to take much higher doses and clear up more slowly. The bad news about being a low-doser is that I have constant symptoms from the guai, altho actually right now, I'm not having any, come to think of it. People who need higher doses have more distinct "cycles," and so have periods of feeling good and then periods of symptom exacerbations.

If someone has been sick for a long time with FM, the guai protocol is definitely not going to be a "get well quick" experience. Dr. St. Amand hypothesizes that every 2 months on guai reverses about 1 year of FM symptoms, so someone who has been really sick for 10 years will have several years of symptom exacerbations on the guai to really get to feeling good again. So, for long-time FMers, it requires patience, major persistence, faith, and is just, plain tough. Since I've had it so much easier than most because I caught it relatively early, I just wish that more people knew about the protocol earlier in their disease, because then they wouldn't have to go through such tough times reversing it, and the protocol wouldn't be so scary. For many, it is a treatment of last resort because of the symptom exacerbations, and so it's harder on them when they finally do start. From all the people I have come to know who are on the protocol, many of whom started about the same time my daughter and I did, it's well worth it. Even though many of them started out much sicker than I, they are beginning to resume more normal lives -- can do their household chores, work more hours or are starting back to work, able to play with their kids and take trips they couldn't imagine even 6 months ago. This is a good thing, so I'm very glad you're looking into it.

I know what you mean about your products. I've been using a skin lotion for 25 years that turns out to have a little bit of camphor oil in it. To be honest, I haven't stopped using it. I'm apparently not very sensitive to salicylates and I can always tell when I've been exposed to something that blocks the guai, and so I may be slightly blocking from my lotion, but not enough to stop my progress. It's quite an interesting journey overall.

How long do you have to wait for your appt? You can start guai now, if you don't want to wait, as you can get it in lower doses in the US without a prescription. Best of luck and feel free to ask me anything about it -- have been learning a lot about the whole thing in the past 6 months!

Best wishes,

Val