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Joined: Nov 2005
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I have had various gut issues with Candida, blastocystis and klebsiella. I have no idea whats there right now but my symptoms of fatigue, back pain and brain fog etc have disappeared completely. This took 4 weeks for me to have improvement, then 8 weeks to have complete relief after starting the diet. Things I seem to still have an issue with in addition to starch are fruits and vitamin b (which I think I have isolated to inositol) they cause me to suffer from fatigue (no pain though). My weight has stabilised and the only real remaining thing I have which I am unsure about is a slightly coated tongue, but if I also avoid carrots that starts to disappear (Thats the only root veg I eat). If anyone has any info on that please let me know. I hope at some point I will tolerate fruit but for the moment it seems to make me slightly fatigued, even low sugar berries. Again any ideas or information would be appreciated.

Supplements are fish oil and vitamin e. With 30hr yogurt and acidophilus probiotics. All once in the morning and again in the evening.

Joined: May 2002
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Ok, here comes my story:
It was some 22 years ago that a rheumy said to me that I had Bechterew’s disease or even more frightening “Morbus Bechterew” as he called it, known in English as Ankylosing Spondylitis. I was in a shock, I considered myself an athlete, an avid rower training up to six times a week and just wanting to get a prescription for fysiotherapy for my lower back pain and certainly not wanting to hear that I was chronically ill. Instead of fysiotherapy I had to stop rowing and got a prescription for Surgam an Ibuprofen like NSAID which did help in the beginning. After a year however I took the maximum dose and soon even that didn’t help anymore. The next NSAID was Fenylbutazon or Butazolidine. By taking two or three times 200mg I was able to keep the disease profile pretty low and I was able to have a pretty normal life only at a bit lower pace. In order not to stop my training too abruptly I had started running and a physiotherapist helped to regularly loosen my back an ribcage. Though this all helped me I couldn’t help but notice that in a very gradual manner things were getting worse. About four years ago I realised that something had to change or better I should take thing into my own hands. The death of my father also around that time made me realise that doctors not always have time and means to do the best for one individual patient in a certain situation. Everyone has his own responsibilities too, especially when educated enough to sort things out. So I started searching first in medical databases and later further on the internet and discovered kick as (thanks to the also Dutch Arjan by the way). The more I read the more excited I became: there really was research that was not practiced in the medical world but that do was easy to follow and about which a lot of people were very enthusiastic. So I read about the whole site (not true) ordered the Carol Sinclair book and then started well prepared with the diet. I cannot say anything else then that the first two weeks were the best I ever had spoken AS-wise. I remember sitting in my bed one morning and using my whole ribcage for breathing for the first time in years. My physiotherapist was pretty flabbergasted and said “whatever you’re doing at the moment please go on with it”. My chest expansion which had gone down through the years to 3 cm doubled to 7 cm and my position became so much more upright that I had to adjust the mirror in my car several times in one week. If I had gone on turning back the clock I would now be symptom free but of course there was an endpoint: those things that really got fused stayed fused and especially the neck area was and stays troublesome for me. So after those first months progression stopped and since that time I have my good and my bad times but the baseline stays better then my starting point and my quality of life is pretty good, good enough for an active life and even to run and train for a half marathon once a year. I have not succeeded in stopping my medicines. I did some attempts but maybe the damage from 22 years of AS is just too big so I still use fenylbutazon be it in a reduced dose compared to earlier in my disease.

Like most of us here I believe that the origin of our disease lies in the gut, it’s condition and it’s bacterial flora. Above that I believe that many of the short time effects can also be explained as the result of changes in metabolism caused by eating starches and sugar which fuel our immune system causing pain within hours of eating the starches. Therefore it is useful to train our metabolism to be more economic and to use fats instead of overloading our system with easy energy foods. The apple fast is very useful for that and it is a good clean up of course. I hope in the future to learn and experiment a little further and to be able tone down my disease enough to be able to stop NSAID’s altogether. Thanks everyone for all the input here, the experienced and the new people here altogether and especially John, Bilko, Tim, Ted, Arjan, PattyG, JanandthePmirabilisthing, Codias, Zark, Pello, Evelyn and even more especially the one that expects his name here but doesn’t see it.
Gerard

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I used to be a regular poster on this board a few years ago and to my shame, I have stopped visiting, but for the best of reasons - I no longer suffer from AS symptoms!

I am now 31 years old: I started having lower back pain in my mid teens, which I attributed to playing rugby. By the age of 25 I was walking with a stick and had regular severe flares in joints all over my body. I also had horrific night sweats, and constant lower back pain.

I started the diet out of desperation and within a month the constant back pain decreased and the night sweats stopped. At first I cheated a bit on the diet, but as I saw some real improvement I becane more strict. I began to walk normally again and the flares became minor and very occasional. After a few years on the diet (essentially I excluded all the major starch groups, but didn't worry about foods with low quantities of starch), I realised that I was flaring slightly after drinking beer and since I gave up drinking beer in 2004 I have not had a flare or any other symptom of AS. [It is worth noting that I can drink wine and other forms of alcohol and that other NSDers can tolerate beer with no problem.]

In 2006 I will be riding a stage of the Tour de France (they allow non-pros to ride a stage each year), which would have been an absurd idea just a few years ago. The future for me, will almost certainly be that I will never eat starchy foods for the rest of my life - the risk of returning to my previous state is too frightening now that I am completely symptom free.

My advice to anyone considering the diet or trialling it, is to stick at it, even if you do not have such immediate results as I had, because many people have only had results after more persistence.

Joined: Mar 2004
Posts: 490
Warrior_AS_Kicker
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Lower back aches nagged me from my late teens on and off. Iritis hit in my mid-20s and came back 3 times in the next ten years. Finally, a doctor ordered the HLA-B27 test in late 2003 and I found this place shortly after by searching "iritis and HLA-B27." Thank goodness! At my first visit to a rheumatologist in early 2004, I was diagnosed with "Spondylarthropy probably Ankylosing spondylitis." That day, I joined and posted here.

Being trained as a pharmacist, I know all the side effects of medications and didn't like the future of being constantly on drugs with serious adverse effects. So I looked into alternatives. The diet sounded reasonable, but I read some non-AS books and tried vegetarian and gluten-free diets first. GF helped (mostly with migraines), but not nearly enough. So 8/04 I began the NSD with an apple fast. It hasn't been easy, but BOY is it worth it! When I stay away from starch, I have essentially no lower back/SI pain. When I cheat too much it comes roaring back worse than before I started the diet.

If I have to stay away from starch for the rest of my life, I think it is worth it. I am on no medication at this time and use supplements like probiotics, l-glutamine, MSM, vitamins and minerals. I visit a chiropractor weekly who adjusts using an activator and not twisting.

It is not an exaggeration to say that this website and this diet have changed my life for the better. I owe a debt of gratitude to those who came before me and made the information available and helped me "get it." To those considering trying I'd suggest, just do it, you won't regret it.


Ann
mom to three boys 10, 12, 14
Diagnosed with spondylitis in 2004
pharmacist who now seeks natural therapies including NSD & essential oils

Joined: Jan 2004
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80 % success. Almost there.

In high school, cycling was my passion. However, I would often get sick before every ride, no matter the importance. When I was in my early 20s I had to quit cycling because of my stomach and my left knee, which started to hurt. The doctor said that I had worn it out, I couldn't believe it. I then started working out at the gym, but everytime I went my stomach would get upset, somtimes in the middle of a workout.
When I was 24 I moved to Korea and fell in love with the spicy food. A few years later my stomach decided that it had had enough and was rejecting almost everything I ate. I lost over 20 pounds to the toilet in just over a month. I couldn't go out without having to run to the toilet. It was affecting my work and every aspect of my life. I went to about 10 doctors and they all said it was stress. The most stress I had was from the doctors. I had a camera down the throat, had terrible chinese medicine, and even electrical therepy, but nothing worked. I decided to stop eating spicy food and focused on bland food; tuna sandwiches every day. I ate a ton of bread and rice. My stomach only got worse. Eventually I decided not to eat very much and my stomach started to get better, but I still had frequent bouts of IBS.
When I was 30, back pain started to kick in. I could only sleep for a few hours then I would wake up in severe pain. It took me forever to put on my socks. Eventually this would subside and then come back again. Other joints would also hurt. Carrying grocery bags was too difficult, let alone working out. I went to many doctors, but got no answers. Then one day I had a cramp in my butt. I told a doctor about this and she ran some tests. Low and behold, I had AS and RA. I was actually relieved; I knew what was wrong with me. She put me on Sulf and Celebrex and told me to exercise. I stared swimming and took the pills religously. The doctor then told me that I should find some way to get off the medicine, as they are only a temporary soloution. They were starting not to work anyway, and swimming was only giving me back pain.
That was when I discovered this site. I decided to go LSD and I found that my pain and stomach problems were greatly reduced. About two months in, I did the apple diet. After that I felt amazing, but still had some pain. At this time I stopped taking my meds and discovered I didn't need them. At times my stomach would flare up, so I decided to go NSD, and dairy free. To help my stomach heal, I quit eating disaccharides and drinking. I still have an occassional beer, cofffee, ice cream, piece of cheese, or piece of dark chocolate, and I do fry up bacon and eggs almost every morning. Other than that, I adhere to the diet strictly.
I am also supplementing. I take clacium, multi-minerals, multi-vitamins, L-glutamine and probiotics (all liquids or gel caps). However, I am not consistant. I may go days without one or another. I am also on steroids. I was going through the day with no energy and thought I would have to come off the diet. The doctor said that it was because of my out-of-wack prostate, not the AS, but that the steroids would help with the energy and the AS in the long run. The steroids and supplements are all starch free. She also said there is someting wrong with my liver, but it is not serious at this point. The reason I am not religious with the supplements is because I don't want to tax my liver or kidneys. I also have allergies to a million different things, which the doctor said is related to the AS. I am contemplating immuno therepy, but I am worried the monthly shots for 3 three years will trigger my AS.
Currently, because of the diet, I have very little pain. Once in a while my back will get tired or my foot will ache. My most common enemy is itchy, sore eyes and other effects from allergies. I almost never have a bad stomach now, although it is not perfect. Before the diet I would get headaches 2 or three times a week. Now I get them maybe 5 times a year, and it is usally because of a cold or I cheated on the diet. I am going to the gym 3 time a week. I started 2 months ago and was doing very little weight. Now, however, I am starting to lift heavy weights. The best thing is that I am feeling great. After I work out I feel wonderful. I am not sore at all. I am still not doing stomach exercises for fear up waking a sleeping giant, but I am planning to add them to my regiment soon.
I can't say that I am cured, but I can say that I am a million times better than I was. I am definetly heading in the direction of a cure rather than the toilet or wheelchair. While the diet is hard and sometimes depressing, the alternatives are much worse.
To those who discovered the diet and all those who promote it, I thank you. You really saved my life.


A Rolling Stone Gathers No Moss, Hopefully!
Joined: Sep 2004
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I’m in my twenty-first year and I was diagnosed with A.S in March 2004. I started the no starch diet about six months later.

I remember I first started experiencing pain in my hips and legs when I was about 12 years old. It wasn’t too bad, but it was always there, and whenever I told anyone they just said it was growing pains. Even the doctor. So I left it at that and hoped it would go away soon. But as I got older, it got worse. At high-school, my hips and legs got worse. I’d dread having to get up when the bell rang, because it was so difficult to change position, stand up, etc. with an un-pained expression on my face, or without crying out. But still, “it’s just growing pains”. My first real crippling time was when I was about 15. My neck suddenly became so incredibly sore that I literally couldn’t move it. If I wanted to lie down, I needed someone to hold my head and lower it onto the pillow, because I couldn’t use any muscles at all because it was so painful. I truly thought it was just going to snap. That would last about 3-4 days, and then slowly go away, until a few weeks later it would all start again. I went to the doctor again, he just gave me painkillers, which didn’t really work. But I started feeling like I was crazy. Maybe everybody felt this pain, and it was just me that couldn’t handle it…? Maybe it was all in my head, if the doctor couldn’t even realise how extreme the pain was. Then in late 2003, the pain spread and increased much more. It was all through my legs, hips, knees. I coped with it as best I could, and tried to keep exercising, because I like to jog and walk a lot, etc. But in the end, I just couldn’t. I couldn’t even walk. Walking to the toilet was the most I could handle at a time, and it would take me ages to get there. I started getting really depressed. Sitting, doing nothing is something I abhor. I went to the doctor at the beginning of 2004, and finally he realised there was something truly wrong. He guessed it was A.S, and did blood tests and a few days later I was in the hospital with a specialist. And I was told I had A.S, and it was incurable…maybe I’d end up in a wheelchair, it just depended on how extreme my case was. They gave me exercises to do to keep my bones straight, etc. and put me on medication, which I’d have to be on the rest of my life. And I did my exercises religiously, hated being on medication, and thought “there must be another way!”

About six months later a friend told me about an interview they had heard on the radio with a lady called Carol Sinclair, etc. and I went out and bought the book. That day I started the no starch diet and stopped my medication, even though the pain was still there, but I wanted to be able to assess my pain levels. Well it took a while. At first I didn’t cut out dairy, and I had a lot of trouble with hidden starches, but after about 3-4 months, with the help of this wonderful forum, three-day apple fasts, cutting out ALL starch and dairy, I managed to reach a level of very little pain, or none at all. I became very underweight, I lived very unhealthily for a time I guess, but for a while I just didn’t know what to eat. I just ate salmon and things that would heal my gut. My main aim now was just to heal up my gut. I ate hardly any vegetables or fruit, cos tested, they’d come out starchy. But at least it kept my pain levels down. After a while I started adding more foods; all vegetables (except potatoes and kumara, etc.), fruit (except bananas), and then later, dairy. I must have healed up my gut, because these foods, even if I tested for starch and they were positive, didn’t affect me. Recently I slowly introduced rice. I could tolerate little amounts at first, but now I can eat as much as I want. Things like rice flour and rice flakes I can eat in small amounts, but not often. I can also eat chocolate, which I don’t eat much, but is so lovely when I do. Now I live completely pain-free, unless I eat something wrong, where I do get pain, but so little I hardly notice now, especially compared to what it was.

It took a while of getting used to, and perfecting, but it sure is the best thing I’ve ever done! To think I could still be taking those terrible pills, and slowly crippling up without knowing, and not being able to tell how the A.S was progressing inside me, underneath the veil of the medication, and worried that maybe I’d be in a wheelchair when I was older.

But nothing of that now. The best thing about the diet is that we can FEEL how we are getting better! No pain means no stiffening, because it means there really is no inflammation inside us; it’s not just being masked by medication. And if there is any pain, just keep moving and monitor what you’re eating a little closer until it goes away again. Don’t lose hope, because no matter how long it takes, it does help so incredibly in the end.


...i've got opium in my chimney, no other life to choose, nightmare made of hashdreams, got the devil in my shoes. tell me, tell me, what have i done wrong, ain't nothing go right with me, must be i've been smoking too long...
Joined: Jan 2006
Posts: 111
Journeyman_AS_Kicker
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Hi, my name is Christina and this is my NSD success story.

I am now 34 years old and live in London. I was born and raised in Austria until I decided to move to England when I was 24.

My AS started when I was 17-18. After 1 year of pain from my lower back over my buttocks into my legs I decided to see a doctor. No result. Then flare ups started. I would get a lot of pain in my lower back, sometimes I could not walk, I could not sleep, or would wake up in the middle of the night because of the pain. I had all the usual symptoms. Unbelievably I went through this time of most of my major flare-ups without any painkillers. I just had no idea pain killers existed. I tried to see yet another doctor during a particular bad episode. I was diagnosed with a kidney infection. Which resulted in me spending two weeks in bed (which is probably responsible for my quite immobile very lower back), a lot of antibiotics and an Ultra scan of my kidneys. Which showed that my kidneys were in perfect health, but that something was wrong with my sacroiliac joints. At that point I knew I was not imagining things and half a year later finally found a specialist (thanks god for the Austrian health system!) who finally diagnosed my AS. Again a very typical story. I was given a prescription for Voltarol, send to an exercise class and told that I would probably be disabled with a fused spine by 40 and no, there was nothing that could be done. By that time I was 24 and somewhat depressed.

Luckily by then I did not have too many major flare-ups and only took medication and painkillers occasionally, however, there was always pain. When I was 30 I suddenly had a really bad flare up. This time (and for the first time) my neck area was affected. I went through two weeks of absolutely excruciating pain, bad side effects with meds, meds not working etc. Hell. That was the first time I started checking out the Internet regarding AS thinking there must be something else. By that time I was on 24h slow release Voltarol and I did not like the idea that my life was regulated by medication. I was very lucky and found the KickAS site and info regarding the no starch diet very quickly. I decided to give it a try straight away, as I had nothing to lose. Until then my diet was really starch heavy (being a student I had not much money and pasta, potatoes and similar were cheap and filling).

I stopped the medication the day I started with the diet to see if it would work. After a couple of days the pain levels dropped considerably. As most people I was very strict at the beginning. After a while I would eat starchy food when I felt I couldn’t resist. But I would always get pain. If I only had a little starch (particularly flour) I would feel it in the neck, prolonged binging would affect my lower back and hips. Temptation and a very odd feeling of deprivation are still very difficult for me to deal with. And now I have a new battle at my hands: Iritis. This started in October 2005 and made me come back to the KickASforum. And now I have realised how much more there is to learn and that I could feel even better!

Overall I can say that my diet really keeps my AS in check. I don’t feel it has progressed much since I’ve started with the diet. I see my rheumatologist (who does not believe in the diet but tells to me to continue if it makes me happy…) once a year. Last time I saw her assistant and she was amazed how mobile I still was. I am pretty sure this is down to the diet.

Yes, it is hard. No doubt about that and I am fighting against the little devil in my ear every day (one little biscuit is ok…) but I know I must be very careful, especially now that I am starting to get Iritis too.

I would say to everyone with AS, at least give it a try! Carol Sinclair’s book is great and the AS diet primer or also called the London AS diet food list really helps to get started.

Hope I can inspire you to get started!

My goal is now to be even better to myself, find fantastic new recipes and learn more about supplements. And keeping in contact with KickAS!

Joined: Nov 2005
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Hi Christina and everyone else out there! This is my first post, so I hope I do it correctly....

In september of 2005 my 16 yr old son was finally diagnosed with AS. For about 18 months of chasing various aches and pains and even shoulder surgery. During a follow up to the shoulder surgery we were expressing our concerns about Drew's "pulled groin" he had obtained during a wrestling tournament 6 months earlier. They checked him 3 times for a hurnia thinking that was the problem. After I instisted our family doctor order an mri of the pelvic and groin area, the surgeon felt we needed to see an arthritis doctor to "rule out" his suspicions of AS.
Short version - they tested him and yes indeed he had all indictions of AS. He was already taking Mobic, so they increased the dosage. In the meantime, I did what many people do, I got on the internet and spent hours and hours reading up on AS. Drew's symptoms were getting worse with rib pain, ankle swelling, foot pain, jaw pain and horrible hip and lower back pain. He was walking like a little old man. It was awful to watch. When we went back to the doctor he put him on Prednesone and Sulfazine in addition to the Mobic.

In the research we found the no starch diet information and decided it was worth a try! Drew made a decision to follow the no starch to the T. We tested everything! Within 3 days the swelling in his ankle was gone and he wasn't hurting as bad. In 5 days the pain was nearly gone. Shortly after than he was pain free and to this day about 2 months later he is completely pain free.

I would like to see him go off the medicine, but he is not sure if that is the best thing to do. Drew gets up at 4:30 every morning and heads off to the gym to lift weights. He has high school wrestling practice after school for a couple of hours. He is now doing very very well and hopes to make it to the state tournament in February. He wants to wait until after that time to cut back on the meds and test adding or re-introducing some foods. His 1 slip up was eating a brownie about 2 weeks ago. He had some discomfort for about 3 days.......

If anyone is thinking about trying the no starch diet, I feel it is the most wonderful thing we have found thus far. I can't tell you as a mother how greatful I am to see him bounce out of bed and participate in the sport of his dreams. Best of luck to anyone who tries this way of life.

I would love to hear from those who have cut back on meds and how it went.....

Cheryl

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You did it just fine! Welcome to you and your son!
I've cut back dramatically on meds to about one over the counter pill a week, maybe 2, like a single ibuprofen or aleve (naprosen), when I am doing something physical on weekends that is going to challenge my right knee. This keeps it from getting wobbly as fast. For instance, last week we went skiing (at age 50, I am a very green run skiier at this point ) and I can ski mostly turning and edging on my left knee but sometimes the right needs to carry some of the load and it gives out much more quickly if it's not, unfortunately, medicated. I've tried tylenol and it does absolutely nothing so why bother. It's not a pain thing, both knees feel about the same, it's a function thing.
When I was in my twenties and first flaring up badly I took a lot of NSAIDS. I was on the prescription merry-go-round as I got older, and had to stop as my kidneys just absolutely cannot tolerate processing prescription strength NSAIDS. Go to the doctor and complain. What do they do? Just give me another NSAID. Bleep that. Crappy family history, vulnerability to infection, and some other neuro things going on with me make me a poor candidate for the newer biologicals.
I feel better off the meds than I did on them, they were making me feel very sick and were giving me balance issues, which I cannot tolerate. Because I have been physically active all of my life (read that "have done many fun but dumb **** things with horses") I cannot tell at this point how much of my basic creakiness is just old age, AS damage, and how much is injury and wear and tear. (except that right knee. that is definitely HORSE related ) All of my adult life I've woken up stiffer than a normal person and taken longer to loosen up, so I don't have a comparison. My husband is the same age as I and does not have it and he's feeling pretty creaky some days too, he's getting regular osteoarthritis in his shoulder, I'm pretty sure.

I don't know what to say. Ideally we all want to be off of all meds. Meds do damage the stomach, intestines, kidneys, liver. I know the side effects from the drugs are as bad as the disease sometimes, but I also know that feeling of immortality as younger person, and that feeling that taking something temporarily that might harm us is worth it to do something that we love and that keeps us mobile.

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My mornings were hell. It took me about 20-45 minutes of lying there stiff like a board just to prepare myself for a thrust upward into a pool of pain. I had trouble getting up stairs. Walking to the can only 30 feet away was a journey. I have been dealing with this pain for a few years in total denial."It's just a stiff back" I couldn't turn my neck. lane changes were not that fun. I got sandals because tying my shoes .....I got sandals. Droping stuff in the mornings became a joke because I would laugh and say "That's the way she goes, I'll get it later." I have a dog so I walked no matter how bad I felt. I found this site and almost laughed at the Idea that starch was contributing to the way I felt. I was in so much pain that I gave it a shot. I went 3 weeks, My mood swings were not that pretty. It was tough, I was hungy and grumpy. Wow what a combo. I ate some perogies, bread, and other things that night. I was hit with a huge flare up. After that I stopped eating Starch in a very strict manner. I use Iodine. When it turns black I won't touch it. orange is alright. I was in so much pain a while ago. I was really depressed. I had to leave my job. Now things are looking up. I feel way less pain. It's always there but I can get up when I want and walk when I want. Some days are still a little tough but not close to what I was going through before. I also do physio everyday and have dropped the anti-inflammitories. I can't say that this will work for all. Everyone's so different. I have to thank all the people here for the great info. The Starch cravings are gone and I lost 40 lbs which helped with my hips, spine, neck and ankles. By the way I love pizza, Bread, Potatoes, etc. If you love something sometimes you gotta set it free. There are some other good alternatives on this site though. WOOT!!!!WOOT!!!

Amendment 5/9/06

I have too add to my NSD story, It's been working for me but people should be very careful about this diet. I think We're all really different and It takes a while to taylor a diet that will work for you. I might suggest starting with the Low Starch Diet and see how you feel. Also consulting a nutritionist might help. Take it slow. There is tons of info here. Read as much as you can before starting a NSD. When I hear of people having trouble with blood sugar and passing out ,that's just Is not cool and very scary. Anyways, all the best to all of you and good luck.

-Oliver

Last edited by Dotyisle; 05/09/06 05:34 PM.
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