Re: One year update

[Guest guest]

Reg,

You said exactly what my son and I were discussing just a couple of days ago! Of course, we are about to elect a president, so these kind of issues have been on our minds. Without very good prescription coverage in the US, most drug prices are outrageous! But our gov't doesn't want people going across the border to keep from paying so much! Now they are scrambling to get this vaccine from your country! I'm not taking it either.

Reg, I'm in the same boat as you as far as not seeing miraculous improvements on LDN, but I will take the slight improvements that I have seen. Truly, without it, I'm not sure that I would be alive today as fast as I was going down when I started it. I just keep hoping that more improvements are on the way.

24/7 need for a wheelchair is no fun. Life from this viewpoint can be so hard. Even the simplest things. I do think that most of what I percieve to be progression now is more a result of lack of movement, but moving is so dam hard! I really have to conserve my energy.

Nov 3rd will be a year for me. Hang in there!

Marcie

In a message dated 10/16/2004 12:55:12 PM Central Daylight Time, regkreil@... writes:

Now that there is a vaccine shortage it is strange how our Flue drugs are now OK for Export to the States ain,t it?

[Guest guest]

Hello to all of my friends

I am not compaining but I said when I started the LDN that I would tell you all how it has been going.Well here it is one year to the day that I started to take LDN, This is what has happened in my life.

To begin with I am at this point and probably for the last three years or more been slowly progressing, I have to sadly admit this as I am now using my electric wheelchair in my house almost full time!

A year ago I only used it to get to my garage which is one hundred feet away from where I sit now, and also it allowed me to have the energy to do some wood working or to putter once I got there.

Today I won't trust myself around my power tools, or tablesaw,I like having all my fingers even if my left hand isn't that useable it is still attached, and I want to keep it that way!

Last year I could get into my bathtub to shower and after get out on my own, at this point my wife has to help me get my legs over the tub or I can not have a shower. A bath is totally out of the question as once I am down.... I am down for the count and she is not built like a wrestler.

I now have a tub seat and have applied for a home renovation grant to get a wheelin shower stall built.I never thought that I would have to do this especially after seeing my improvements on LDN.

Those few improvements while impressive were not to last though and for the last three months have been dissapearing.

I am taking as always a large amount of suppliments,too many to list here, and I don't believe they have hurt me in anyway.I asked at a drugstore yesterday and the druggest hadn't heard of ferulic acid and since I live in rural Canada I can't get it delivered to my roadside postal box.

I have slowly increased my dose and now (as of five days ago) am up to 4.5mgs a night,just what I started with, I still use Acidophilus as a filler and use the same compounder as I started with,cause I don't have many choices.

I wish I could trade my flue shot with those of you that want it,as I don't and won't get one.(who needs Alzheimers?)

Now that there is a vaccine shortage it is strange how our Flue drugs are now OK for Export to the States ain,t it?

I am not going to stop taking LDN though, as with chronic progressive MS there is nothing else to take,maybe I would be way worse off if I hadn't taken LDN for the last year.At least I can still go an extended period without using the washroom and that's a blessing.As a guy I can only hope that it is holding off the flue or prostate cancer, as that would be the final straw.

I have not seen anything in anyway at all bad come from taking LDN,but I sure miss those wild dreams I once had.

I have taken the odd break from LDN but it seemed to me that I was always farther behind every time I started again!

So in summation: in my case, it appears LDN or the LDN made here is not the end all or the total answer for me. But it was sure a fun ride while the good times lasted,

You know I reread this and even though it sounds like a farewell letter that is not the case, I still feel great and look forward to many more years of contributing my twobits worth.

Reg

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Thank you Reg for your complete honesty...you are in my prayers that

someday soon your disease will not only be halted but reversed. Never

loose hope! About ferulic acid; I live in Edmonton and my husband

could not find it at one of our best health food stores. We are

thinking it may be at a sports supplement store since its mainly

athletes that use it?? If we find it I'll let you know. I tried

drinking passion flower tea last night for spasms but still had to take

medication for complete relief to fall asleep. Valerian seems to relax

me at first but then the reverse happens.

Thank you all for your contributions...you feel like my family. Even

though I dont talk on here alot, I read everything and we are in this

together!

God Bless you all!

Kathy

On 16-Oct-04, at 11:53 AM, Reg Kreil wrote:

> <image.tiff>Hello to all of my friends

> I am not compaining but I said when I started the LDN that I would

> tell you all how it has  been going.Well here it is one year to the

> day that I started to take LDN, This is what has happened in my life.

> To begin with I am at this point and probably for the last three years

> or more been slowly progressing, I have to sadly admit this as I am

> now using my electric wheelchair in my house almost full time!

> A year ago I only used it to get to my garage which is one hundred

> feet away from where I sit now, and also it allowed me to have the

> energy to do some wood working or to putter once I got there.

> Today I won't trust myself around my power tools, or tablesaw,I like

> having all my fingers even if my left hand isn't that useable it is

> still attached, and I want to keep it that way!

> Last year I could get into my bathtub to shower and after get out on

> my own, at this point my wife has to help me get my legs over the tub

> or I can not have a shower. A bath is totally out of the question as

> once I am down.... I am down for the count and she is not built like a

> wrestler.

> I now have a tub seat and have applied for a home renovation grant to

> get a wheelin shower stall built.I never thought that I would have to

> do this especially after seeing my improvements on LDN.

> Those few improvements while impressive were not to last though and

> for the last three months have been dissapearing.

> I am taking as always a large amount of suppliments,too many to list

> here, and I don't believe they have hurt me in anyway.I asked at a

> drugstore yesterday and the druggest hadn't heard of ferulic acid and

> since I live in rural Canada I can't get it delivered to my roadside

> postal box.

> I have slowly increased my dose and now (as of five days ago) am up

> to 4.5mgs a night,just what I started with, I still use Acidophilus as

> a filler and use the same compounder as I started with,cause I don't

> have many choices.

> I wish I could trade my flue shot with those of you that want it,as I

> don't and won't get one.(who needs Alzheimers?)

> Now that there is a vaccine shortage it is strange how our Flue drugs

> are now OK for Export to the States ain,t it?

> I am not going to stop taking LDN though, as with chronic progressive

> MS there is nothing else to take,maybe I would be way worse off if I

> hadn't taken LDN for the last year.At least I can still go an extended

> period without using the washroom and that's a blessing.As a guy I can

> only hope that it is holding off the flue or  prostate cancer, as that

> would be the final straw. 

> I have not seen anything in anyway at all bad come from taking LDN,but

> I sure miss those wild dreams I once had.

> I have taken the odd break from LDN but it seemed to me that I was

> always farther behind every time I started again!

> So in summation: in my case,  it appears LDN or the LDN made here is

> not the end all or the total answer for me. But it was sure a fun ride

> while the good times lasted,

> You know I reread this and even though it sounds like a farewell

> letter that is not the case, I still feel great and look forward to

> many more years of contributing my twobits worth. 

> Reg

>  

>

> ____________________________________________________

> <image.tiff>  IncrediMail - Email has finally evolved - Click Here

>

>

>

[Guest guest]

Reg, it was great to read your update. From the sounds of it, the one thing you've got going for yourself and you can't buy it in a bottle. . . is your positive outlook on life. It's one of the most powerful tools we all have! Happy one year anniversary, hope you have a wonderful weekend.

From: Reg Kreil [mailto:regkreil@...] Sent: Saturday, October 16, 2004 1:54 PMlow dose naltrexone ; MSWatchers Subject: Re: [low dose naltrexone] One year update

Hello to all of my friends

I am not compaining but I said when I started the LDN that I would tell you all how it has been going.Well here it is one year to the day that I started to take LDN, This is what has happened in my life.

To begin with I am at this point and probably for the last three years or more been slowly progressing, I have to sadly admit this as I am now using my electric wheelchair in my house almost full time!

A year ago I only used it to get to my garage which is one hundred feet away from where I sit now, and also it allowed me to have the energy to do some wood working or to putter once I got there.

Today I won't trust myself around my power tools, or tablesaw,I like having all my fingers even if my left hand isn't that useable it is still attached, and I want to keep it that way!

Last year I could get into my bathtub to shower and after get out on my own, at this point my wife has to help me get my legs over the tub or I can not have a shower. A bath is totally out of the question as once I am down.... I am down for the count and she is not built like a wrestler.

I now have a tub seat and have applied for a home renovation grant to get a wheelin shower stall built.I never thought that I would have to do this especially after seeing my improvements on LDN.

Those few improvements while impressive were not to last though and for the last three months have been dissapearing.

I am taking as always a large amount of suppliments,too many to list here, and I don't believe they have hurt me in anyway.I asked at a drugstore yesterday and the druggest hadn't heard of ferulic acid and since I live in rural Canada I can't get it delivered to my roadside postal box.

I have slowly increased my dose and now (as of five days ago) am up to 4.5mgs a night,just what I started with, I still use Acidophilus as a filler and use the same compounder as I started with,cause I don't have many choices.

I wish I could trade my flue shot with those of you that want it,as I don't and won't get one.(who needs Alzheimers?)

Now that there is a vaccine shortage it is strange how our Flue drugs are now OK for Export to the States ain,t it?

I am not going to stop taking LDN though, as with chronic progressive MS there is nothing else to take,maybe I would be way worse off if I hadn't taken LDN for the last year.At least I can still go an extended period without using the washroom and that's a blessing.As a guy I can only hope that it is holding off the flue or prostate cancer, as that would be the final straw.

I have not seen anything in anyway at all bad come from taking LDN,but I sure miss those wild dreams I once had.

I have taken the odd break from LDN but it seemed to me that I was always farther behind every time I started again!

So in summation: in my case, it appears LDN or the LDN made here is not the end all or the total answer for me. But it was sure a fun ride while the good times lasted,

You know I reread this and even though it sounds like a farewell letter that is not the case, I still feel great and look forward to many more years of contributing my twobits worth.

Reg

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Thankyou all for the encouraging words I know I have friends and what more is needed than friends?

I know that the blurry vision that is happening is from MS (snif snif)

Reg.

-------Original Message-------

From: low dose naltrexone

Date: 10/16/04 14:02:22

low dose naltrexone

Subject: RE: [low dose naltrexone] One year update

Reg, it was great to read your update. From the sounds of it, the one thing you've got going for yourself and you can't buy it in a bottle. . . is your positive outlook on life. It's one of the most powerful tools we all have! Happy one year anniversary, hope you have a wonderful weekend.

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

took the words right out of my mouth, Reg.

________________________________________________________________

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[Guest guest]

susan... congradulations on doing so well. i have one question before you totally wean yourself off this web site. how do you feel from sitting to standing... do you have any weight bearing pain at this point. i am nine months post op and i still do., i wonder if thats"normal" thanks and good luck.....dreasusanoops <susanoops@...> wrote:

Today is my hips first birthday. I bought a cake to take to work and had them write "Hip Hip Hurray" on it.I guess this means my recovery is officially over. I believe at this point my risk of dislocating drops to 3% and stays there. Not too bad I guess.Whats my life like now? Normal is the best way to describe it. Nothing too exciting, just normal.Today was a pretty typical day for me. Worked 5 hours, 4 of them on my feet. Came home had a snack while watching Oprah. Then watered my plants, cleaned the cat box, the bunny box, the duck water dishes, plus their two wading pools. Hauled in two 50lb bags of feed. Hauled out the trash. Checked the oil in my car. I carry a tylonal tablet in my pocket most of the time. (for the other hip) some days

I use it, some I don't. I would prefer to be carrying Celebrex, but can no longer get it. Today I did not need it. Did a few exorcises this morning and will do more tonight. Didn't get in an official walk, but did yesterday, and hopefully will tomorrow. Things are pretty much like they were about 5 years ago, when I knew I had arthritis, but it was not running my life. Still have my one year check up to schedule, (plus x-rays) once I get approval. I expect everything to be fine. Now, to start weaning myself off this website. No offense. And I probably won't disappear completely. It helped me so much. But it gets harder and harder to even begin to catch up. I have too much other stuff to do now. I need to get off my butt and back to it. I got so hooked though, esp. on the stories of the people that had surgery near my time that did not

go well. I keep waiting it hear that everything is ok for everyone now. Well anyway, thats my story. Was it a major pain in the butt (literaly) having a hip replacement at 50? Yeah it was, but am I 100% better than I was 365 days ago? Oh yeah! Can I do what I need to do (which was my biggest fear before surgery)?? Yes, I can.Good luck to all.

for Good Click here to donate to the Hurricane Katrina relief effort.

[Guest guest]

Hi ,

Well I just wanted to say that I'm glad your doing ok and have a nice day.

Susie

-------------- Original message --------------

susan... congradulations on doing so well. i have one question before you totally wean yourself off this web site. how do you feel from sitting to standing... do you have any weight bearing pain at this point. i am nine months post op and i still do., i wonder if thats"normal" thanks and good luck.....dreasusanoops <susanoops@...> wrote: Today is my hips first birthday. I bought a cake to take to work and had them write "Hip Hip Hurray" on it.I guess this means my recovery is officially over. I believe at this point my risk of dislocating drops to 3% and stays there. Not too bad I guess.Whats my life like now? Normal is the best way to describe it. Nothing too exciting, just normal.Today was a pretty typical day for me. Worked 5 hours, 4 of them on my feet. Came home had a snack while watching Oprah. Then watered my plants, cleaned the cat box, the bunny box, the duck water dishes, plus their two wading pools. Hauled in two 50lb bags of feed. Hauled out the trash. Checked the oil in my car. I carry a tylonal tablet in my pocket most of the time. (for the other hip) some days I use it, some I don't. I would prefer to be carrying Celebrex, but can no longer get it. Today I did not need it. Did a few exorcises this morning and will do more tonight. Didn't get in an official walk, but did yesterday, and hopefully will tomorrow. Things are pretty much like they were about 5 years ago, when I knew I had arthritis, but it was not running my life. Still have my one year check up to schedule, (plus x-rays) once I get approval. I expect everything to be fine. Now, to start weaning myself off this website. No offense. And I probably won't disappear completely. It helped me so much. But it gets harder and harder to even begin to catch up. I have too much other stuff to do now. I need to get off my butt and back to it. I got so hooked though, esp. on the stories of the people that had surgery near my time that did not go well. I keep waiting it hear that everything is ok for everyone now. Well anyway, thats my story. Was it a major pain in the butt (literaly) having a hip replacement at 50? Yeah it was, but am I 100% better than I was 365 days ago? Oh yeah! Can I do what I need to do (which was my biggest fear before surgery)?? Yes, I can.Good luck to all.

for GoodClick here to donate to the Hurricane Katrina relief effort.

[Guest guest]

Today is my hips first birthday.

I bought a cake to take to work and

> had them write " Hip Hip Hurray " on it.

>

> I guess this means my recovery is officially over. I believe at

this

> point my risk of dislocating drops to 3% and stays there. Not too

> bad I guess.

>

> Whats my life like now? Normal is the best way to describe it.

> Nothing too exciting, just normal.

>

> Today was a pretty typical day for me. Worked 5 hours, 4 of them

on

> my feet. Came home had a snack while watching Oprah. Then watered

> my plants, cleaned the cat box, the bunny box, the duck water

dishes,

> plus their two wading pools. Hauled in two 50lb bags of feed.

> Hauled out the trash. Checked the oil in my car. I carry a

tylonal

> tablet in my pocket most of the time. (for the other hip) some

days

> I use it, some I don't. I would prefer to be carrying Celebrex,

but

> can no longer get it. Today I did not need it. Did a few

exorcises

> this morning and will do more tonight. Didn't get in an official

> walk, but did yesterday, and hopefully will tomorrow. Things are

> pretty much like they were about 5 years ago, when I knew I had

> arthritis, but it was not running my life. Still have my one year

> check up to schedule, (plus x-rays) once I get approval. I expect

> everything to be fine.

>

> Now, to start weaning myself off this website. No offense. And I

> probably won't disappear completely. It helped me so much. But it

> gets harder and harder to even begin to catch up. I have too much

> other stuff to do now. I need to get off my butt and back to it.

I

> got so hooked though, esp. on the stories of the people that had

> surgery near my time that did not go well. I keep waiting it hear

> that everything is ok for everyone now.

>

> Well anyway, thats my story. Was it a major pain in the butt

> (literaly) having a hip replacement at 50? Yeah it was, but am I

> 100% better than I was 365 days ago? Oh yeah! Can I do what I

need

> to do (which was my biggest fear before surgery)?? Yes, I can.

>

> Good luck to all.

>

>

>

>

>

>

>