DMS
07-12-2001, 03:41 PM
Hello,
I am new here and posted my first message this morning. I read your reply regarding Dr. St. Amand and his work with guai, so I went to his website and found out he is an hour away from me. I called and set up an appt. for later this month. I will let you know how that goes, but in the meantime I am searching my products for ingredients that could be harmful; like the lotion I've used for ages...it has aloe in it. So, you are in remission? How did you turn yourself around? Thank you for the Dr. St. Amand tip! Have a good day, DMS
I am new here and posted my first message this morning. I read your reply regarding Dr. St. Amand and his work with guai, so I went to his website and found out he is an hour away from me. I called and set up an appt. for later this month. I will let you know how that goes, but in the meantime I am searching my products for ingredients that could be harmful; like the lotion I've used for ages...it has aloe in it. So, you are in remission? How did you turn yourself around? Thank you for the Dr. St. Amand tip! Have a good day, DMS
Sponsor
Valerie
07-12-2001, 09:29 PM
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
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
Valerie
07-12-2001, 09:36 PM
Oops! I see that you get to go in later in the month. That's fantastic! I have a friend who has an appt on the 26th. She's traveling in from Georgia the day before. She is quite a case -- started 3 months ago and was really a doubting Thomas and grumbler about the whole thing, but is already getting good results and is very high on guai now. Cracks me up, because she was so negative to begin with.
Anyway, good luck again!
Val
Anyway, good luck again!
Val
DMS
07-12-2001, 11:32 PM
THANK YOU! THANK YOU!
Your info really helps, Valerie. I was lucky to get the appt. when I did because someone canceled or else I would have had to wait til Nov. I will try to find the otc quai for now. I don't know how long I've had this; the last 2 yrs. has been one medical issue after the other, but the joint pain, stiffness, achiness has only been with me for at least 4-5 months. I will be happy if Dr. St. Amand says I have a low dose and if I can be a fast responder, but we'll see soon enough. Did you see him 6 mos. ago or did you just start yourself on a program and you're going to see him for your 1st time? What do you do/take for your pain while the symptoms come out worse on the quai? I can't imagine not having pain medicine to get through that.
I have bladder issues that I have been speculating is interstitial cystitis (I have an appt. for a cystoscopy Aug. 6th) and I have horrible cramps during my periods (I'm 38-that doesn't seem right!). That would be great if it's the fibro causing those things and if I go into remission, they'll get better too.
I am ready to throw out my products, but I'll wait til after my appt. It would be easier for me to give up candy than my body lotion!! What do you do about your diet?
The Dr.'s appt. is pretty expensive; he doesn't take my ins., but if he cures me, even 75%, it will be well worth it! Congratulations on doing so well yourself. I'm sorry your daughter has it as well. There's enough to go through at her age without the FM. Thanks again for the great info...I'm going to order his book. Take care, Deanna
Your info really helps, Valerie. I was lucky to get the appt. when I did because someone canceled or else I would have had to wait til Nov. I will try to find the otc quai for now. I don't know how long I've had this; the last 2 yrs. has been one medical issue after the other, but the joint pain, stiffness, achiness has only been with me for at least 4-5 months. I will be happy if Dr. St. Amand says I have a low dose and if I can be a fast responder, but we'll see soon enough. Did you see him 6 mos. ago or did you just start yourself on a program and you're going to see him for your 1st time? What do you do/take for your pain while the symptoms come out worse on the quai? I can't imagine not having pain medicine to get through that.
I have bladder issues that I have been speculating is interstitial cystitis (I have an appt. for a cystoscopy Aug. 6th) and I have horrible cramps during my periods (I'm 38-that doesn't seem right!). That would be great if it's the fibro causing those things and if I go into remission, they'll get better too.
I am ready to throw out my products, but I'll wait til after my appt. It would be easier for me to give up candy than my body lotion!! What do you do about your diet?
The Dr.'s appt. is pretty expensive; he doesn't take my ins., but if he cures me, even 75%, it will be well worth it! Congratulations on doing so well yourself. I'm sorry your daughter has it as well. There's enough to go through at her age without the FM. Thanks again for the great info...I'm going to order his book. Take care, Deanna
DMS
07-12-2001, 11:33 PM
P.S. Let us know how the appt. goes on Monday...Good Luck.
Valerie
07-13-2001, 11:32 AM
Hi Deanna. I got his book right before Christmas, got about 1/3 of the way through it and was so excited, I couldn't wait to start my daughter. It was the only thing I'd run into that had a theory, accounted for all the different kinds of weird symptoms and held out strong hope. So, I went out and bought Robitussin cough syrup that has pure guai in it, without any pseudophedrine, and started giving that to her Christmas night. It has sugar and other nasty things in it, tho, so the sugar gave her a headache on an empty stomach. We had an appt with our PCP 3 days later, and she was already doing better. He had no objection to trying the guai, so he wrote her a script for the long-acting kind and she started on that the same day. That's when we really saw improvements -- I kept waiting for the symptom exacerbations at first, but it's just not as hard on kids as on adults to take this stuff, and she just continued improving. I took her in to our massage therapist on 1/5/01 to have her first mapping done and it was a mess! About 150 different lumps and bumps and big ridges and so on. Took her back in March and she had only 5 big lumps left in her upper back and neck -- lower back, legs and arms had all cleared. But our MT isn't experienced with mapping, so will be glad to have it done by Dr. St. Amand. When I decided to try it at the end of January, I ordered the 200mg short-acting OTC pills and started with those and took them for about a month until I got my order from Australia. I know my PCP would have also given me a prescription, but it was cheaper and easier to just order them from AUS, rather than set up an appt, blah blah. There is so much info on the web and in his book that I didn't feel we needed to go see Dr. St. Amand in order to figure it out, and my daughter had already missed 22 days of school (!) last fall, so we waited to go until this summer.
I haven't needed anything stronger than an occasional ibuprofen in the last six months, but I had been taking naprosyn for the back pain I was having, altho it didn't do much for it. My daughter, however, was on every med in the book in Dec. She continued taking elavil for sleep at night, celebrex 250mg twice a day, darvocet PRN, percocet if she got really bad, fioricet for bad migraines (altho those have virtually stopped now with the hg diet), and 10 mg paxil (it supposedly helps 15% of FM'ers with pain) until early March. When she doubled her dose of guai then to 1200mg/day, she was able to go off everything. Now she gets by with occasional melatonin for sleep and ibuprofen, which she usually needs only if she does too much. Our PCP refilled her darvocet script in early May and she still has 10 or so in the bottle, and takes them for menstrual cramps. Her periods are still bad, but improving, and you may find yourself having a harder time with them with guai, also -- it's a common reaction. Unless you have aspirin in any of your pain meds, there is NO REASON at all to go off them when you're taking guai, until you're through the worst of the cycling. Many people on guai are taking vicodin, ultram, vioxx or celebrex, other narcotics, anti-depressants -- whatever they were using or need to handling the cycling. Guai just doesn't interact with any other drugs (except anything with salicylates in them), so it's not a problem to keep taking whatever you need.
I don't do anything about my diet. I still eat whatever I want. My daughter has really benefitted from the low-carb/hi-protein diet (hg), however, and is also avoiding the foods to which she tested positive in January for allergies. Only about 40% of the patients in Dr. St. Amand's practice need to be on the diet, so you can play around with it and see if it makes any difference in your pain levels. The diet has been key in decreasing my daughter's headaches.
Dr. St. Amand has everyone start at 300X2. If you have an increase in your symptoms at that dose and the lumps and bumps clear out of your left thigh after a month (he will recheck you), then that is your cycling dose and you will stay there. About 20% of people (I think that's the number) do fine at 300X2, i.e., 600/day. A larger number need to be at 1200/day, so after a week at 600mg, if you aren't having any increase in symptoms, he will tell you to raise it to 1200mg and stay there until you go in again. Some people need as much as 4800mg/day, and it just depends on your own genetics and how your body works what your correct dose will turn out to be. It will take a couple of months to be sure you've found your correct dose, but you are so lucky that you will be able to go back and see him regularly, because it won't be as confusing as it is for people who are having to do this on their own!! Yay for you!
I agree that it's very expensive. I haven't heard back yet if our insurance is accepted, but my kids are under 3 different plans, so I hope SOMEBODY will help pay!! LOL!
I'll definitely let you know how it goes on Monday. I'm really excited!
Love,
Val
I haven't needed anything stronger than an occasional ibuprofen in the last six months, but I had been taking naprosyn for the back pain I was having, altho it didn't do much for it. My daughter, however, was on every med in the book in Dec. She continued taking elavil for sleep at night, celebrex 250mg twice a day, darvocet PRN, percocet if she got really bad, fioricet for bad migraines (altho those have virtually stopped now with the hg diet), and 10 mg paxil (it supposedly helps 15% of FM'ers with pain) until early March. When she doubled her dose of guai then to 1200mg/day, she was able to go off everything. Now she gets by with occasional melatonin for sleep and ibuprofen, which she usually needs only if she does too much. Our PCP refilled her darvocet script in early May and she still has 10 or so in the bottle, and takes them for menstrual cramps. Her periods are still bad, but improving, and you may find yourself having a harder time with them with guai, also -- it's a common reaction. Unless you have aspirin in any of your pain meds, there is NO REASON at all to go off them when you're taking guai, until you're through the worst of the cycling. Many people on guai are taking vicodin, ultram, vioxx or celebrex, other narcotics, anti-depressants -- whatever they were using or need to handling the cycling. Guai just doesn't interact with any other drugs (except anything with salicylates in them), so it's not a problem to keep taking whatever you need.
I don't do anything about my diet. I still eat whatever I want. My daughter has really benefitted from the low-carb/hi-protein diet (hg), however, and is also avoiding the foods to which she tested positive in January for allergies. Only about 40% of the patients in Dr. St. Amand's practice need to be on the diet, so you can play around with it and see if it makes any difference in your pain levels. The diet has been key in decreasing my daughter's headaches.
Dr. St. Amand has everyone start at 300X2. If you have an increase in your symptoms at that dose and the lumps and bumps clear out of your left thigh after a month (he will recheck you), then that is your cycling dose and you will stay there. About 20% of people (I think that's the number) do fine at 300X2, i.e., 600/day. A larger number need to be at 1200/day, so after a week at 600mg, if you aren't having any increase in symptoms, he will tell you to raise it to 1200mg and stay there until you go in again. Some people need as much as 4800mg/day, and it just depends on your own genetics and how your body works what your correct dose will turn out to be. It will take a couple of months to be sure you've found your correct dose, but you are so lucky that you will be able to go back and see him regularly, because it won't be as confusing as it is for people who are having to do this on their own!! Yay for you!
I agree that it's very expensive. I haven't heard back yet if our insurance is accepted, but my kids are under 3 different plans, so I hope SOMEBODY will help pay!! LOL!
I'll definitely let you know how it goes on Monday. I'm really excited!
Love,
Val
Valerie
07-18-2001, 04:15 PM
Hi all! We saw Dr. St. Amand on Monday morning and it was such a nice visit. He spent about 2.5 hours with us and "mapped" the three of us. The good news is that my daughter has been on the right dose and is clearing up very well. I was worried that I've had her at too low a dose, but he says it will be her maintenance dose (300mg twice a day). For right now, he wants her to take 1200mg/day for the rest of the summer to "blast that stuff out of her," and she has been tolerating the higher dose for the last couple of weeks, so she'll stay there.
My map was looking pretty good for a 47 yo who has been accumulating nasty stuff for all these years. I haven't been mapped before, but I think the combination of the guai and the undenatured whey protein have been cleaning me out. He says I'm fine at 300x2, also, so I'll stay with it.
My son, who hasn't been on either guai or whey, was pretty much a mess on his map, which wasn't a surprise to me. So, the dr. said to put him on guai at 300X2 for a couple of years and then see if he can go off it a bit later. Many boys show the FM symptoms prior to puberty, but then something good happens to them and they get over it, whereas the hormonal changes seem to only make it worse in girls.
So, I'm really glad we went in to see him just to make sure my daughter is on track and to get my son checked out! And the insurance will pay for it all, so that was a big relief, too!!!
Val
My map was looking pretty good for a 47 yo who has been accumulating nasty stuff for all these years. I haven't been mapped before, but I think the combination of the guai and the undenatured whey protein have been cleaning me out. He says I'm fine at 300x2, also, so I'll stay with it.
My son, who hasn't been on either guai or whey, was pretty much a mess on his map, which wasn't a surprise to me. So, the dr. said to put him on guai at 300X2 for a couple of years and then see if he can go off it a bit later. Many boys show the FM symptoms prior to puberty, but then something good happens to them and they get over it, whereas the hormonal changes seem to only make it worse in girls.
So, I'm really glad we went in to see him just to make sure my daughter is on track and to get my son checked out! And the insurance will pay for it all, so that was a big relief, too!!!
Val
DMS
07-18-2001, 07:25 PM
Hi Valerie!
Can you tell me more specifics about the appt. with Dr. St. Amand? Like, how does he do a mapping of you? Do I need to bring notes with me explaining everything that has been going on with me? Like when just 10 min. ago I walked fast out of a room and hit the side of my elbow on the corner of a wall and thought I was going to pass out!!!! It hurt so bad for about 5 min. I couldn't believe it. Normally that would have just made me say a bad word, but now things like that bring tears to my eyes. I know, WAH WAH! :) I would love to hear more info from you; you have done pretty good with answering my questions before I even ask them. Thanks alot and have a great day, Deanna
Can you tell me more specifics about the appt. with Dr. St. Amand? Like, how does he do a mapping of you? Do I need to bring notes with me explaining everything that has been going on with me? Like when just 10 min. ago I walked fast out of a room and hit the side of my elbow on the corner of a wall and thought I was going to pass out!!!! It hurt so bad for about 5 min. I couldn't believe it. Normally that would have just made me say a bad word, but now things like that bring tears to my eyes. I know, WAH WAH! :) I would love to hear more info from you; you have done pretty good with answering my questions before I even ask them. Thanks alot and have a great day, Deanna
Valerie
07-19-2001, 02:45 PM
Hi Deanna -- I think notes would be very helpful for the appt. I'm not sure our visit would be representative of what he would do with a first-time patient, because he knew we've been on his protocol for 6 months already and understood his theory and so on, so I think the teaching part of the appt. was less than it otherwise might be with someone new. With each of us, he started out with a symptom list and asked if we had had the symptom, when it started, how often and so on. And then he did the mapping. In the preliminary info I sent in, I included copies of all the tests that have been done on my daughter, and he had already reviewed all of that before we got there. It would also be good if you came in with a list of questions for him, since mine fell out of my head the minute we walked in the door and I was sorry I hadn't written them down. You will enjoy your time with him. He's a sweetie and so is Claudia, his nurse and co-author.
Val
Val