[LarryLDN]

http://www.larrygc.com/mystory is my early days journal thread on my LDN Ezboard. Two weeks ago for some reason I could on longer surf to my ezboard! Now that I am able to, I think I should mirror and duplicate MyStory here, just in case I lose that site again, I'd hate to lose all my journaling.

My journal/thread/story... to follow :

[LarryLDN]

4/17/03->11/21/03 -- 220 days on LDN

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originally posted 11/21/03:


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.

[LarryLDN]

10/04 - 11/04 - 07/24/05, Day 830

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Unfortunately all my updates since the initial post here have been lost forever in an ezboard crash. I don't know why they didn't come back, but they sure didn't.

I had written about my staph infection back in October 04 that stunned a podiatrist after only 2 Levaquin 500 doses.

Back in November I was weighed, I was 124 in November 03, and 127 last November. I went away camping for 2 solid weeks and just got home last Sunday. Last Wednesday I went to my chiro and he suggested I had lost weight.

So I got on the scale and was shocked. I asked him to verify the accuracy of his scale, and it sure was working correctly! I now weigh 114! This is the lowest I've weighed since the 1970s!

I noticed earlier this week that a belt I bought a few months ago could use another hole. Thought that was strange, but didn't consider I was down to 114!

Since Thursday 7/14, my legs also feel different. I started taking B1 since 7/1 to help keep away the mosquitos (still got a few bites), maybe that had something to do with it. I had Vidalia onions that night with dinner, the cook said that must have been it. LOL.

Another great July under way.

[LarryLDN]

My Staph infection 10/04

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My podiatrist has documention of his first case of this strain of staph infection that I apparently got back on Labor Day weekend (2004) while camping, and it took 6 weeks to blow up. I saw him on 10/25/04, he gave me a script for Levaquin antibiotics and Loprox lotion. He said if I got this Labor Day week, it should have come out a lot quicker.

Told me to come back 10/27. Loprox wasn't in til the next day, so I went back with 2 doses of Levaquin and only one application of Loprox. When he examined me, he had a very puzzled look on his face and then smiled. Told me he doesn't understand it, he showed me his referral for that day to the hospital, that he wrote out on Monday.

He said he never saw this strain Reverse and Retreat within 48 hours of starting treatment. He's 'only' a podiatrist for 22 years, plus whatever he learned in school. He showed me the referral and told me he fully expected to be sending me there that day. He was truly amazed.

He told me my immune system must be operating at peak efficiency. I said "But, I have MS", his jaw dropped and he said "no way!". Then I told him about LDN. He'd never heard of it. I told him our theory that it orchestrates the immune system, and the blockade, etc, etc.

He said "That MUST be why". He told me to finish off the Levaquin, continue with the Loprox and gauze, and to come back in a week. I went back the next week, asked me for more details about LDN, so I gave him the website and keyspelled naltrexone for him.

He gave me a different cream to use, just once a day, and to come back in a month. A month later he changed the cream again and told me to come back in 6 weeks. He then said it was 100% gone, no trace.

So there's one doc who's convinced, unbiased, never heard of LDN before, but sure seen it 'field tested' and convinced it is what made all the difference in my case.

Unbiased is key. I have other documention, but they're by my chiropractors, not my neuro.

[LarryLDN]

Day 1054 - 03/05/06

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Wow, a lot has happened personally since Lincoln's birthday. I decided it was time to start revisiting my docs who I haven't seen in a while. When I called to make an appt I found out my doc had retired LAST MAY, so I made an appointment to see the main doc there (never saw him before though)

So, Day 1037, went to see my doc and got my bloodwork results from 1/05. Cholesterol was good, 188. Weight 115 lbs, bp 114/82, p 71, temp 98.8. He wanted me to go for new tests, so this is what I've done since: Chest xray, echo cardiogram, blood/urine, and they ran an EKG that day. I go back this coming week to find out the results.

Since around that time I had a major life change and shock, I thought I was going to end up with the biggest flare of my life! Instead, I think I'm more in remission than ever before! I'm quitting smoking; down to like 5 cigs a day. All my major issues that LDN couldn't touch seem to be GONE. I'm feeling better than I have in years, except for July 2003 and July 2005 when I was camping away from home and family.

I went to my chiro yesterday, and I'm down another 5 lbs... Weight 110! bp 110/66, p 72

Apparently due to a life changing event, I'm doing much better than I've been doing in years. LDN is doing its part but it seems like a weight was taken off my shoulders. I can even tolerate the cold air.. not totally, but a whole lot better!

[LarryLDN]

Day 1058 - 03/09/06

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Just came from my doc, got my results for my chest xray, echocardiogram and blood/urine work.

I'm like 20 years old again!

My cholesterol is 126! My bro's, on lipitor, is 145 (I called him to brag). I was 110 lbs back on Saturday, I'm back up now to a better level, 113 lbs. My bp today is 120/76, pulse 74.

I thought back over my medical history to see if I could figure when I felt anywhere near this good, for any more than short periods of time... Um... 1995, during my 26 months without presenting symptoms, until my left ear MS/allergy deafness 10/96. A decade ago! Though, I do believe I was 20 lbs heavier than now.

I can only hope things continue to get better. Things are finally looking up! Still not totally perfect, but a whole lot better medically than in a long long long time.

[LarryLDN]

Day 1097 - 04/17/06

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Tonight will be Day 1097, 3 years on LDN! Nothing new to report. Didn't make the conference, had a doc appt. Good thing I didn't go, my car has a problem and I'd NOT have made it!

[LarryLDN]

Day 1115 - 05/05/06

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I lost access to this site for a few weeks, so now that I have access again, I should give a short update.

My weight is still stable, I'm around 114 lbs. Still walking well. My car was in the transmission shop for a few days and yesterday I walked to work! Unfortunately it cost me $2010, but hopefully the car will give me many more years and my MS will remain in full remission.

I am now a non-smoker, finally, totally. 4/26 was the last time I had a cig. Going on 10 days, and counting.

[deborah1969]

What a great update, I am toying with the idea of giving up chocolate as I think it might exacerbate things for me. Your story is so interesting and invaluable to anybody thinking of trying LDN or is indeed on it. Thanks for so much for info. Best wishes Deborah

[LarryLDN]

Day 1119 - 05/09/06

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Another miss! So now 4 misses, Days 359, 864, 1004 & 1119

[LarryLDN]

deborah1969, on May 7 2006, 12:39 PM, said:

What a great update, I am toying with the idea of giving up chocolate as I think it might exacerbate things for me. Your story is so interesting and invaluable to anybody thinking of trying LDN or is indeed on it. Thanks for so much for info. Best wishes Deborah

<{POST_SNAPBACK}>

Thanks. I had this online on my ezboard, as I said, I lost access to! I got it back for a few days and now can't access it AGAIN! I can't figure out why.. so at least my updates are all here, duplicated, and so far I can get here!

[lady_express_44]

Just wanted to say "Hi Larry" . . . Haven't seen you on the boards for a while, so I was wondering how you are doing.

I just passed my one year anniversary, and still feeling great.

Cherie

[LarryLDN]

lady_express_44, on May 25 2006, 12:40 PM, said:

Just wanted to say "Hi Larry" . . . Haven't seen you on the boards for a while, so I was wondering how you are doing.

I just passed my one year anniversary, and still feeling great.

Cherie

<{POST_SNAPBACK}>

Can always be reached via email if I'm still online, I'll get it So far, so good with LDN.

[LarryLDN]

Day 1370 - 01/24/2007

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My weight is now 128-132, the lower weights didn't last much passed that May update. I shot up to 129, then went back to 122, and back up and leveled off 128-132.

Been a high stress time since September, but things are working out slowly, and LDN is still helping greatly.

I ordered the LDN 2006 Conference DVD when I got my refill. Great production, I have to show it to a few people, maybe they'll understand a bit more.

[LarryLDN]

Re: Day 1424 - 03/10/07

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1424 Days and counting. My last exacerbation was 5 years ago this month, March 02, after having annual exacerbations from 1991, with the longest in-between being 25 months from 9/94 til 10/96, I'd say LDN is helping a little bit, eh?

[LarryLDN]

Re: Day 1500 - 05/25/07

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I had a baseline closed Tesla 1.5 brain MRI 8/04.

I just had a follow up Brain MR done 4/19/07, with comparison. The report was: No Progression shown, virtually identical to the previous one.

I had a Cervical and Thoracic MRI 4/20/07, but the C&T previous set was from 8/02, and this Thoracic showed my T5 "area of sclerosis" was healed, no abnormalities on my Thoracic at all.

My Cervical showed my C5 "two lesions" from 7/02 were healed, and showed MS in my C2/C3 that wasn't there in 8/02, 8 months before starting LDN. My chiros said I had C2/C3 issues since before starting LDN. They are very impressed with the 3 MRI results. We now have a baseline Thoracic and Cervical, if any are ever done again.

[LarryLDN]

Re: Day 1615 - 09/17/07 Allergy Testing 2003 / 2007


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I went for environment prick testing 2 weeks ago. Today they did higher concentrations Intradermal of what didn't react originally, and then 30 Food pricks.

The needles hurt a bit, but they now have the prick tests on 5 small needles molded together, so they all hit your skin at the same time. So doing 30 is in 6 of those things. 3 on each inner/lower arm. 2 weeks ago was 50, so another 4 on the outer/upper arms.

The list for environmental is pretty much the SAME in allergy reaction as it was on the Feb/Mar 2003 tests I had done, which was 1-2 months prior to starting LDN on 4/17/03. EXCEPT, no more trees? NO reaction from the trees or tree mix.

The FOOD tests! WOW! Maybe they used water? LOL. NO.

ONLY the histamine reacted. According to this batch of 30 pricks, only one reacted, the one that reacts on everyone, the control, the histamine. These tests say I am No Longer Allergic to food stuff?


This WAS my list from 2&3/2003:

Prick testing

02/01/03 +/- Beef

+1 Pork

02/04/03 +/- Lima Bean

+/- Alpha Lactalbumin

02/06/03 +1 Tuna

+1 Flounder

+2 Halibut

02/20/03 +4 Orchard

+4 June

+4 Red Top

+4 Sweet Vernal

+4 Timothy

02/25/03 +2 Rhizopus

+3 Mites Db

+3 Mites Df

Intradermal testing

02/27/03 +4 Mixed Ragweed

03/01/03 +2 Cat

+3 Dog

+3 Mixed Feathers



This is my new list:

--------------------------------------------

Prick testing Environmental

09/06/07 +2 Grass mix

+2 Weed mix

+2 Horse, Mouse, Rabbit

+3 Feather mix

+4 Dust Mite F & P

+2 Cockroach

Intradermal

09/17/07 +2 Ragweed mix

+2 Cat hair



Prick testing Food

09/17/07 NOTHING on this list showed allergy



FWIW. YMMV. HAND.



__________________
Last Cigarette 04/26/06:
One year, four months, three weeks, 21 hours, 24 minutes and 20 seconds. 15266 cigarettes not smoked, saving $4,198.36. Life saved: 7 weeks, 4 days, 10 minutes.

[Nona]

LarryLDN, on Sep 17 2007, 08:22 PM, said:

Re: Day 1615 - 09/17/07 Allergy Testing 2003 / 2007

Food intolerances in particular are certainly fascinating and I'm pleased for you with your new results.

Having pondered what you've said for a while, and assuming they really didn't use water , I have a crucial question:

Did you do anything to get over these intolerances (e.g. give up the offending food types and dogs for a while)?

[LarryLDN]

Nona, on Sep 23 2007, 08:57 AM, said:

Food intolerances in particular are certainly fascinating and I'm pleased for you with your new results.

Having pondered what you've said for a while, and assuming they really didn't use water , I have a crucial question:

Did you do anything to get over these intolerances (e.g. give up the offending food types and dogs for a while)?

Well, I lived with 4 cats for years, even after the 2/2003 test results showing I was allergic. I left that environment 2/21/06, so it may be why I started feeling different after that.

Chocolate triggered most all my allergy related exacerbations through the years, so I try to avoid it. Other allergens I would eat here and there and never too much, just enough to test the waters and enjoy. I've done that with chocolate too, and I don't show allergy to it any more, but surely get telltale sx from it.

I may try Tuna again for a while and see if I feel any different than I used to feel with it before I knew I was allergic.


I also haven't hade a cigarette since 4/26/06, One year, four months, four weeks, 20 hours, 15 minutes and 52 seconds. 15475 cigarettes not smoked, saving $4,255.71. Life saved: 7 weeks, 4 days, 17 hours, 35 minutes.

[Nona]

Thanks for that info, Larry.

And well done on the smoking. Now we just have to break you of the habit of tracking exactly how long it's been since your last cigarette .....