Someone asked for some LDN Testimonies to show to his neuro. I sent him a copy of a message I sent to the groups on 8/10. Everything written applied through
the first week in September. Since September I have been through 4 major events, I call tests, 2 intentional in Sep and early Oct, stress 10/29, and the last
one was obviously unavoidable, last week.. my son was sick, before that his mother was sick, everyone I talked to the last few weeks is sick. Coughing,
sneezing, runny nose, or stuffed up.... hmmm... just realized eyes were itching the last week though.
In September, when I ate chocolate until I started to feel SX coming on, my eyes itched, as well as all my other typical signs I have cocoa in my system. Within a few days of stopping the chocolate, the SX subsided. Test failed, chocolate WILL flare me up. The LDN didn't stop or change anything there, but it did get me out of it quickly once I stopped eating the chocolate. All chocolate/cocoa related exacerbations took 3-5 weeks to subside years ago before I knew they were exacerbations. Especially in 1998 when I didn't even know I was consuming cocoa.
In October, my son and I were home alone the first weekend, so I tested playing Playstation2 Grand Theft Auto: Vice City. In March 02, I believe it was Grand Theft Auto 3 that caused that exacerbation. Well, after playing it a few hours each day for 2 days, I started to feel weakness setting in. A few days later I definitely felt the weakness, and my right hip through my knee area was in pain, could hardly walk. I went to my chiro and he said it was my Psoas muscle. They did some trigger point and ultra sound, adjusted me at 1pm and told me to come back again at 3:30, and they checked me out again and adjusted me some more. The next night it wasn't bothering me as much, and the next morning I was fine again. LDN alone? Probably not. Chiro alone? Probably not. But together they seem to be a winning combination.
In late October I had a stress incident. No need to go into the details, but I started feeling SX that I never had! 11/3 my chiro worked on me and by 11/5 I was feeling better again. Shortest flare up I ever had, physical symptoms anyway. Had a lot of other issues to work through, and I couldn't even talk about them with a friend without spasming all over, and my throat getting very sore very quickly.
And finally, last Thursday I woke up very ill. Coughing, sneezing, the works. My son was sick, his first day back to school was when it got me. So Friday I was off to the doctor. He gave me a script for promethazine, but I only took it a few times. Saturday I was off to my chiro. Started to feel better on Monday, Wednesday I was out all day, and then Thursday I was out all day. Wednesday I bought DL-Phenylalanine 500 MG and starting taking them in the morning.
So with those 4 events in mind, here's my original 8/10 message, with commentary from today, 11/21, Day 220 :
From my journaling since Day 1, 4/17/03:
4/17/03, Day 1, slept more peacefully than ever before (or at least 21+ years, since it was my wife who told me that I slept more peacefully and she knows me that long). Confirmed daily first week to ten days, and I still occasionally ask, but I can tell now too. I think only 3 times in the last 3 months I woke up feeling like I weighed 1000 lbs. 11/21: Still no problems sleeping.
4/22/03, Day 6, discovered I could stretch muscles, been stretching since; couldn't for 11 months. Some people complain about stiffness, I take it as my cue to stretch. 11/21: Can still stretch, and often do, but since September my left leg wasn't cooperating at times. Still better than prior to LDN. Hasn't happened in a few weeks.
4/26/03, Day 9, drove 5 speed standard shift after trying 2 and 3 days earlier without being able to keep the clutch in, and been driving it ever since. RLS GONE, hasn't returned since. 11/21: I love my Saturn! Have had some days with some shaking while clutching since September during the timeframes mentioned. Was still able to shift when I was able to drive.
4/28/03, Day 11, chiropractors said it was easier to adjust me than many years previous. Day 11, went 4 hours without BU/F. 11/21: I've had some close calls a few times since Day 11, but nothing compared to how it was before. Seems to be normal... when I drink a lot of liquids, I don't think the frequency is a problem.
5/10/03, Day 24, T5 spasming while drinking didn't happen, hasn't happened since, used to happen often. 11/21 : have had some T5 spasming in the last few months, but rarely now, compared to often prior.
6/14-15/03, Day 59/60, went camping overnight, was walking, standing, in squishy muddy grounds, for 11 hours (5pm-4am). Sat down 5 times, 3 times in a porta potty and twice to watch on stage performances for 20-30 mins. Only 'problem' was around 2am when I was standing in one spot for 90 minutes, my left leg knee felt "locked up" and was bothering me. Walked around and exercised it, went away.
6/28/03, Day 73, discovered could curl toes on left foot, could never do that, life long problem, I think more related to my L5 SBO from birth than MS. Still can't control right toes (YET?). Not sure when it happened, but since I never could do it, and didn't consider I ever would, I wasn't looking for it to happen. I noticed by accident and freaked myself out! 11/21: Right foot is still not cooperating. I did do it a few times, but it cramps my leg. I've smashed those toes so often in the last 4 decades, I'm just happy they're all still connected.
Just some of the highlights from my journaling. Fatigue issues I had prior to April are also gone or at least changed for the better. Used to get sudden fatigue, stop what you're doing and close your eyes NOW, happened 5:30-6:30AM while working 12-8; used to happen 5-6PM while working regular day shift.
7/04-26/03, went on 3 camping trips, went to Atlantic City, then Seaside Heights. Was on my feet 12+ hours a day, 18 of 23 days. 7/16-20 grounds were 15 degree or greater incline. July has been the most totally awesome month I've had in at least 12 years. Not sure how much the LDN had to do with it, other than allowing me to be where I was for it to happen.
Do we judge this on its own merit, or do we judge it by comparison? There is no comparison to the previous 13 months. Life is very different the last 3 months compared to the last ? years. Last June (02) someone asked me if I was ever "not in pain", and back then my answer was "um, hmmm... no".
Is my health perfect? No. I still have some issues that haven't gone away, I think they're related to my C5 lesions, but they're not constant and distracting like they used to be. Maybe some day they'll be gone too, but for now, they're a piece of cake to deal with compared to the orchestra of woes I dealt with from March 02 til the end of April. Some people say they think LDN has even made them happier and less depressed. I agree with them, I just can't tell where since I've been spiritually a fairly happy guy in the face of it all since I became a student of Dr. Wayne Dyer's teachings back in 1993. 11/21: still can't seem to get depressed and stay that way. Someone recently told me this can make me appear manic. I get upset, blow it off, and start fresh the next day. But now that I'm aware of that, it shouldn't be a problem. The DL-Phenylalanine may also help.
I also have a phenomenal chiropractor I've been seeing since 1989, another one a lot closer to home since 1991, and since April 02 a new graduate (son of my first one) who took over my case at the height of my exacerbation last year. They've been keeping me going all these years. 11/21: My chiros have helped me all these years, but since being on LDN, it seems like the time-to-heal has been a lot quicker. On 11/3, he really thought I was going to flare up for a while. My chiro adjustments help the LDN do its thing, and my body can do the rest.
I was taking Coral Calcium and some other vitamins here and there, but when I started LDN in April, I stopped taking everything else. I still take some when the mood strikes, and I bought B-50 Complex that I take a few during the week. I wanted to make sure the LDN has no interference or assistance from anything else I may have been taking on a daily basis. 11/21: I have been taking one Coral Calcium here and there, again, as well as the B-50s, and some others. After seeing my neuro in October, I picked up FiberCon generics and a stool softener. I used the stool softener a few times just be sure. I'm still taking the FiberCons, and they seem to be helping greatly.
------------------------------------
11/21/03:
Last night I took my 220nd 3.0 MG dose. I am taking them in 2 1.5 MG caps. When I saw my neuro last month I asked him to change my dose to 4.5 MG, and have them filled in 1.5 MG caps. My intention, as I told him, was to try 4.5 at some point, but I wanted to be able to keep doing 3.0. I asked him for 1.5's, he wrote a script for 180 of them. So I'm still taking 3.0 MG presently.
3.0's are green, 1.5's are pink. I'm not quite ready to trial 4.5, for a few reasons. I'm doing OK on 3.0, I can't imagine 4.5 being any better, but I want to find out when I'm feeling 8-9 on a 10 scale. So that's where I am, 11/21/03.
If the next 220 days are as good as the last, no complaints here. Just need to continue to avoid chocolate, playstation 2 action games, other people's colds and STRESS. Well, the first 2 are easy enough.
I was losing hope real fast by March. Even the worst of the last 3 months seems better than the best of any of the 13 months prior to starting LDN. That's my story, and I'm sticking to it.
In September, when I ate chocolate until I started to feel SX coming on, my eyes itched, as well as all my other typical signs I have cocoa in my system. Within a few days of stopping the chocolate, the SX subsided. Test failed, chocolate WILL flare me up. The LDN didn't stop or change anything there, but it did get me out of it quickly once I stopped eating the chocolate. All chocolate/cocoa related exacerbations took 3-5 weeks to subside years ago before I knew they were exacerbations. Especially in 1998 when I didn't even know I was consuming cocoa.
In October, my son and I were home alone the first weekend, so I tested playing Playstation2 Grand Theft Auto: Vice City. In March 02, I believe it was Grand Theft Auto 3 that caused that exacerbation. Well, after playing it a few hours each day for 2 days, I started to feel weakness setting in. A few days later I definitely felt the weakness, and my right hip through my knee area was in pain, could hardly walk. I went to my chiro and he said it was my Psoas muscle. They did some trigger point and ultra sound, adjusted me at 1pm and told me to come back again at 3:30, and they checked me out again and adjusted me some more. The next night it wasn't bothering me as much, and the next morning I was fine again. LDN alone? Probably not. Chiro alone? Probably not. But together they seem to be a winning combination.
In late October I had a stress incident. No need to go into the details, but I started feeling SX that I never had! 11/3 my chiro worked on me and by 11/5 I was feeling better again. Shortest flare up I ever had, physical symptoms anyway. Had a lot of other issues to work through, and I couldn't even talk about them with a friend without spasming all over, and my throat getting very sore very quickly.
And finally, last Thursday I woke up very ill. Coughing, sneezing, the works. My son was sick, his first day back to school was when it got me. So Friday I was off to the doctor. He gave me a script for promethazine, but I only took it a few times. Saturday I was off to my chiro. Started to feel better on Monday, Wednesday I was out all day, and then Thursday I was out all day. Wednesday I bought DL-Phenylalanine 500 MG and starting taking them in the morning.
So with those 4 events in mind, here's my original 8/10 message, with commentary from today, 11/21, Day 220 :
From my journaling since Day 1, 4/17/03:
4/17/03, Day 1, slept more peacefully than ever before (or at least 21+ years, since it was my wife who told me that I slept more peacefully and she knows me that long). Confirmed daily first week to ten days, and I still occasionally ask, but I can tell now too. I think only 3 times in the last 3 months I woke up feeling like I weighed 1000 lbs. 11/21: Still no problems sleeping.
4/22/03, Day 6, discovered I could stretch muscles, been stretching since; couldn't for 11 months. Some people complain about stiffness, I take it as my cue to stretch. 11/21: Can still stretch, and often do, but since September my left leg wasn't cooperating at times. Still better than prior to LDN. Hasn't happened in a few weeks.
4/26/03, Day 9, drove 5 speed standard shift after trying 2 and 3 days earlier without being able to keep the clutch in, and been driving it ever since. RLS GONE, hasn't returned since. 11/21: I love my Saturn! Have had some days with some shaking while clutching since September during the timeframes mentioned. Was still able to shift when I was able to drive.
4/28/03, Day 11, chiropractors said it was easier to adjust me than many years previous. Day 11, went 4 hours without BU/F. 11/21: I've had some close calls a few times since Day 11, but nothing compared to how it was before. Seems to be normal... when I drink a lot of liquids, I don't think the frequency is a problem.
5/10/03, Day 24, T5 spasming while drinking didn't happen, hasn't happened since, used to happen often. 11/21 : have had some T5 spasming in the last few months, but rarely now, compared to often prior.
6/14-15/03, Day 59/60, went camping overnight, was walking, standing, in squishy muddy grounds, for 11 hours (5pm-4am). Sat down 5 times, 3 times in a porta potty and twice to watch on stage performances for 20-30 mins. Only 'problem' was around 2am when I was standing in one spot for 90 minutes, my left leg knee felt "locked up" and was bothering me. Walked around and exercised it, went away.
6/28/03, Day 73, discovered could curl toes on left foot, could never do that, life long problem, I think more related to my L5 SBO from birth than MS. Still can't control right toes (YET?). Not sure when it happened, but since I never could do it, and didn't consider I ever would, I wasn't looking for it to happen. I noticed by accident and freaked myself out! 11/21: Right foot is still not cooperating. I did do it a few times, but it cramps my leg. I've smashed those toes so often in the last 4 decades, I'm just happy they're all still connected.
Just some of the highlights from my journaling. Fatigue issues I had prior to April are also gone or at least changed for the better. Used to get sudden fatigue, stop what you're doing and close your eyes NOW, happened 5:30-6:30AM while working 12-8; used to happen 5-6PM while working regular day shift.
7/04-26/03, went on 3 camping trips, went to Atlantic City, then Seaside Heights. Was on my feet 12+ hours a day, 18 of 23 days. 7/16-20 grounds were 15 degree or greater incline. July has been the most totally awesome month I've had in at least 12 years. Not sure how much the LDN had to do with it, other than allowing me to be where I was for it to happen.
Do we judge this on its own merit, or do we judge it by comparison? There is no comparison to the previous 13 months. Life is very different the last 3 months compared to the last ? years. Last June (02) someone asked me if I was ever "not in pain", and back then my answer was "um, hmmm... no".
Is my health perfect? No. I still have some issues that haven't gone away, I think they're related to my C5 lesions, but they're not constant and distracting like they used to be. Maybe some day they'll be gone too, but for now, they're a piece of cake to deal with compared to the orchestra of woes I dealt with from March 02 til the end of April. Some people say they think LDN has even made them happier and less depressed. I agree with them, I just can't tell where since I've been spiritually a fairly happy guy in the face of it all since I became a student of Dr. Wayne Dyer's teachings back in 1993. 11/21: still can't seem to get depressed and stay that way. Someone recently told me this can make me appear manic. I get upset, blow it off, and start fresh the next day. But now that I'm aware of that, it shouldn't be a problem. The DL-Phenylalanine may also help.
I also have a phenomenal chiropractor I've been seeing since 1989, another one a lot closer to home since 1991, and since April 02 a new graduate (son of my first one) who took over my case at the height of my exacerbation last year. They've been keeping me going all these years. 11/21: My chiros have helped me all these years, but since being on LDN, it seems like the time-to-heal has been a lot quicker. On 11/3, he really thought I was going to flare up for a while. My chiro adjustments help the LDN do its thing, and my body can do the rest.
I was taking Coral Calcium and some other vitamins here and there, but when I started LDN in April, I stopped taking everything else. I still take some when the mood strikes, and I bought B-50 Complex that I take a few during the week. I wanted to make sure the LDN has no interference or assistance from anything else I may have been taking on a daily basis. 11/21: I have been taking one Coral Calcium here and there, again, as well as the B-50s, and some others. After seeing my neuro in October, I picked up FiberCon generics and a stool softener. I used the stool softener a few times just be sure. I'm still taking the FiberCons, and they seem to be helping greatly.
------------------------------------
11/21/03:
Last night I took my 220nd 3.0 MG dose. I am taking them in 2 1.5 MG caps. When I saw my neuro last month I asked him to change my dose to 4.5 MG, and have them filled in 1.5 MG caps. My intention, as I told him, was to try 4.5 at some point, but I wanted to be able to keep doing 3.0. I asked him for 1.5's, he wrote a script for 180 of them. So I'm still taking 3.0 MG presently.
3.0's are green, 1.5's are pink. I'm not quite ready to trial 4.5, for a few reasons. I'm doing OK on 3.0, I can't imagine 4.5 being any better, but I want to find out when I'm feeling 8-9 on a 10 scale. So that's where I am, 11/21/03.
If the next 220 days are as good as the last, no complaints here. Just need to continue to avoid chocolate, playstation 2 action games, other people's colds and STRESS. Well, the first 2 are easy enough.
I was losing hope real fast by March. Even the worst of the last 3 months seems better than the best of any of the 13 months prior to starting LDN. That's my story, and I'm sticking to it.
-- LarryGC/LarryLDN http://groups.yahoo.com/group/MSWatchers
