Gayle

August 15, 2006

Hi - Rather than try to give you time frames, here's a bit from my LDN diary...I don't know how much sense you'll make of it, or if it's helpful at all...because I find it all very confusing! Pleases keep in mind I was coming out of an extremely stressful time in my life and that will have had an effect on what was (and is) happening.

7/1/06

Started on 3mg LDN

Headaches, and poor sleep with very weird dreams, for a few days (less than 1 week)

Much increased spasticity and stiffness in legs and hips, and increased "restless legs" within a couple of weeks of starting

In fact a full-blown relapse, worst since shortly after diagnosis 6 years ago, happened within a couple of weeks of starting LDN

Approx 20/2/06

Stopped LDN after 6 weeks on 3mg, due to severity of spasticity and restless legs

Stiffness and spasticity settling slowly

Mid-April '06

Started 1.5mg LDN 17/4/06 after a break of 8 weeks

After 8 doses 1.5mg, I noticed springiness/stiffness in my "worse" leg and spasms at night but definately not as bad as in January on 3mg

19/5/06

Started 3mg LDN again today

Over next few days

A little better this time…

Headache, dreams, disturbed sleep, only for a few days

Stiff legs though not as bad as in January

28/6/06

· Lots of energy

· Much less spasticity

· Walking better

But then it all went downhill again...

Gayle

From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of and IselbornSent: Tuesday, 15 August 2006 10:30 AMlow dose naltrexone Subject: Re: [low dose naltrexone]Gayle

Gayle,

How long were you on LDN before it settled down? Please tell me again how long you have been on LDN.

Thanks,

-- [low dose naltrexone] LDN compounding

Hi folks - back on this again…I just spoke to my current compounder. He's using pure Naltrexone powder, not the tablets. My misunderstanding, and he wasn't there to check with last week. The filler has been Avicel, so everything seems to have been done the right way. Since I'm very low in my supply I'm getting him to make up this next lot, but trying lactose as the filler instead of Avicel. I'm still planning to switch to the Green Pharmacy (Australia).

After this (MS) relapse settles, do I try going up to 4.5mg? I had pretty bad leg spasms on first starting LDN, but that settled after a few weeks. Do I give liquid LDN a try? Or trans-dermal?

Gayle

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September 22, 2007

Well hello there stranger, we get around you and I. lol

I saw the WW and it didn't click until just then even though

something in the back of my head said I knew what it was.

What a weird feeling.

Good thing my husband is patient with me because I seem to have

misplaced some brain cells lately. lol

Right now I'm dog tired and can't sleep.

We collected all the insurance money from that storm and just had 2

100 foot trees dropped Friday because we don't want them hanging over

all the new construction that starts Monday! Needless to say it's

back breaking and today is the first time I've gotten physically ill

from (I think) tx. It's the heat. :-+

Oh well, it'll be over soon then I can sit back and watch the new

shiny things go up.

So what have you been up to and how ya feeling these days?

Glad to see you here and I think Tim will be here before long as well

since he's pretty much in the same boat as me there.

He mentioned something about " nazis " in his last IM message. lol

Catch ya later,

Gayle

> > Hi all sorry haven't posted in so long very sick then my modem

went

> out. My son brought his old modem over today so am back on line.

That

> helped the depression, felt so alone none of my hepper family to

talk

> too. I look like I have been in a bar fight hahaaa. Bruises all

over

> now and back of my hand and both arms jacked up with them trying to

> get one little tube of blood to test my thyroid. I worry now cause

> have to go in Thurs. for 24 week viral load and other tests so

don't

> know what they will do. My blood pressure is very low so takes

> forever to pump the blood out then the vein gives up, others just

> blow right away. Told them no on the hands and they blow, did they

> listen? Ha then she has the nerve to tell me oh it did just what

you

> said it would do. Well duh and now I have a hemotoma the size of a

> silver dollar. Sleep alot have lots of nightmares about my son,

very

> tired and get sick very easily now. Won't see hep doc til next

month

> to find out about tests on

> > viral load etc. I was so stressed being unable to contact anyone

in

> the group. Didn't have any ph numbers etc. Good to be back hope his

> modem holds up can't afford one lol. Can someone send me their

number

> in case this happens again so I can at least talk to someone

please?

> Love you all and missed you all very much. pat/ww

> >

September 22, 2007

Well hello there stranger, we get around you and I. lol

I saw the WW and it didn't click until just then even though

something in the back of my head said I knew what it was.

What a weird feeling.

Good thing my husband is patient with me because I seem to have

misplaced some brain cells lately. lol

Right now I'm dog tired and can't sleep.

We collected all the insurance money from that storm and just had 2

100 foot trees dropped Friday because we don't want them hanging over

all the new construction that starts Monday! Needless to say it's

back breaking and today is the first time I've gotten physically ill

from (I think) tx. It's the heat. :-+

Oh well, it'll be over soon then I can sit back and watch the new

shiny things go up.

So what have you been up to and how ya feeling these days?

Glad to see you here and I think Tim will be here before long as well

since he's pretty much in the same boat as me there.

He mentioned something about " nazis " in his last IM message. lol

Catch ya later,

Gayle

> > Hi all sorry haven't posted in so long very sick then my modem

went

> out. My son brought his old modem over today so am back on line.

That

> helped the depression, felt so alone none of my hepper family to

talk

> too. I look like I have been in a bar fight hahaaa. Bruises all

over

> now and back of my hand and both arms jacked up with them trying to

> get one little tube of blood to test my thyroid. I worry now cause

> have to go in Thurs. for 24 week viral load and other tests so

don't

> know what they will do. My blood pressure is very low so takes

> forever to pump the blood out then the vein gives up, others just

> blow right away. Told them no on the hands and they blow, did they

> listen? Ha then she has the nerve to tell me oh it did just what

you

> said it would do. Well duh and now I have a hemotoma the size of a

> silver dollar. Sleep alot have lots of nightmares about my son,

very

> tired and get sick very easily now. Won't see hep doc til next

month

> to find out about tests on

> > viral load etc. I was so stressed being unable to contact anyone

in

> the group. Didn't have any ph numbers etc. Good to be back hope his

> modem holds up can't afford one lol. Can someone send me their

number

> in case this happens again so I can at least talk to someone

please?

> Love you all and missed you all very much. pat/ww

> >

September 29, 2007

I swear sometimes the cures seem worse than the diseases we suffer

from. lol

I've never had a problem with clotting and maybe it bled so much

because it was a clean slice from a sharp blade and I was just

letting my imagination run away with me.

I'm so careful about using knives and such anymore and that was a

mindless stunt. lol

Thanks for the info on the meds. I hope you're able to stop taking

them soon!!

Gayle

>

> Gayle, nope never mentioned anything like that. My clotting rate

is still good it seems lol. I have a history of blood clots and

procrit isn't really recommended for us but they do anyway. As far

as sides most don't have a problem with it I am just one of the lucky

ones. Like the other poison we take lol it can have serious side

effects. Mine is mainly nausea, sweats, the runs. It just makes me

sick period, I know of others on it who have no problem except for 1

other person who has a problem with it. It's normal for labs to go

crazy and especially white and red counts. I believe it is the pill

that kills off white cells and the shot that kills the reds but it

could be vice-versa. hugs...pat

>

October 16, 2007

Oh good thought we lost you again hahaaa. Yeah the hair thing is really a

problem but my sister-in-law lost all her hair on chemo-therapy for breast

cancer. My hair is so thin it's almost funny. I will try the ponds sound like

a good idea, don't know when I can go off procrit but hopefully soon. Get tired

of pills and shots hope they don't need to add the other shot for the white

count. That one is slowly coming up but still very low. Very depressed right

now but it will pass lol. love and hugs..pat

Gayle <mollydamaula@...> wrote: Here I am!! (waving franticly)

Been down with a bad cold is all, but I'm still kicking. ;-)

Hey Tim, how's it feel to be on the upswing you lucky devil you!!!?

God I can't wait to feel better. lol I'm really glad for you.

Pat, my hair is thinning badly already at week 8 but my friends are

taking me wig shopping if it gets too bad. lol

I JUST started growing my hair out a half a year before starting this

and it's really killing me to see my newly aquired wavey locks

hanging off my brush.

Oh well... it'll grow back I'm sure and they make some lovely wigs.

lol

So how long will you have to take the procrit you think before you

get a reprieve? I'm happy to hear it isn't making you as sick this

time around.

Hey speaking of being all dry and wrinkled (like me lol) try Ponds

and a facial buff puff, you'll be amazed at the difference in your

skin. I use the cleansing one (makeup remover) with the buff and

rinse, then mix the original moisturizer with a little cool water on

my face and wipe it off gently with a damp cool cloth. Works

wonders.

Take care,

Gayle

The nurse practitioner just called and my

4 week blood work shows the HCV is

> undetectable. She said that's great at this early stage.

>

> The bad news is my hemoglobin is 9.2 and she's going to order

Prescript to

> be delivered to me ASAP. I didn't realize that this is something I

would be

> injecting, but she explained that I'll do it weekly.

>

> The other issue is that I have had some soreness in my upper arm

and now

> some pain in my left shoulder. I feels like I might have slept on

it wrong

> or pulled something. It hurts more when I take a deep breath. I

told her

> that and she was quite concerned. I happen to have 2 appointments

tomorrow

> - my rheumatologist in the morning and the internist in the

afternoon so

> she's going to fax the report over to the internist. She told me if

it gets

> worse, I should go to the ER.

>

> While I'm excited about the good news, I'm concerned about the bad

news :-(

>

October 16, 2007

Oh good thought we lost you again hahaaa. Yeah the hair thing is really a

problem but my sister-in-law lost all her hair on chemo-therapy for breast

cancer. My hair is so thin it's almost funny. I will try the ponds sound like

a good idea, don't know when I can go off procrit but hopefully soon. Get tired

of pills and shots hope they don't need to add the other shot for the white

count. That one is slowly coming up but still very low. Very depressed right

now but it will pass lol. love and hugs..pat

Gayle <mollydamaula@...> wrote: Here I am!! (waving franticly)

Been down with a bad cold is all, but I'm still kicking. ;-)

Hey Tim, how's it feel to be on the upswing you lucky devil you!!!?

God I can't wait to feel better. lol I'm really glad for you.

Pat, my hair is thinning badly already at week 8 but my friends are

taking me wig shopping if it gets too bad. lol

I JUST started growing my hair out a half a year before starting this

and it's really killing me to see my newly aquired wavey locks

hanging off my brush.

Oh well... it'll grow back I'm sure and they make some lovely wigs.

lol

So how long will you have to take the procrit you think before you

get a reprieve? I'm happy to hear it isn't making you as sick this

time around.

Hey speaking of being all dry and wrinkled (like me lol) try Ponds

and a facial buff puff, you'll be amazed at the difference in your

skin. I use the cleansing one (makeup remover) with the buff and

rinse, then mix the original moisturizer with a little cool water on

my face and wipe it off gently with a damp cool cloth. Works

wonders.

Take care,

Gayle

The nurse practitioner just called and my

4 week blood work shows the HCV is

> undetectable. She said that's great at this early stage.

>

> The bad news is my hemoglobin is 9.2 and she's going to order

Prescript to

> be delivered to me ASAP. I didn't realize that this is something I

would be

> injecting, but she explained that I'll do it weekly.

>

> The other issue is that I have had some soreness in my upper arm

and now

> some pain in my left shoulder. I feels like I might have slept on

it wrong

> or pulled something. It hurts more when I take a deep breath. I

told her

> that and she was quite concerned. I happen to have 2 appointments

tomorrow

> - my rheumatologist in the morning and the internist in the

afternoon so

> she's going to fax the report over to the internist. She told me if

it gets

> worse, I should go to the ER.

>

> While I'm excited about the good news, I'm concerned about the bad

news :-(

>

October 16, 2007

Oh good thought we lost you again hahaaa. Yeah the hair thing is really a

problem but my sister-in-law lost all her hair on chemo-therapy for breast

cancer. My hair is so thin it's almost funny. I will try the ponds sound like

a good idea, don't know when I can go off procrit but hopefully soon. Get tired

of pills and shots hope they don't need to add the other shot for the white

count. That one is slowly coming up but still very low. Very depressed right

now but it will pass lol. love and hugs..pat

Gayle <mollydamaula@...> wrote: Here I am!! (waving franticly)

Been down with a bad cold is all, but I'm still kicking. ;-)

Hey Tim, how's it feel to be on the upswing you lucky devil you!!!?

God I can't wait to feel better. lol I'm really glad for you.

Pat, my hair is thinning badly already at week 8 but my friends are

taking me wig shopping if it gets too bad. lol

I JUST started growing my hair out a half a year before starting this

and it's really killing me to see my newly aquired wavey locks

hanging off my brush.

Oh well... it'll grow back I'm sure and they make some lovely wigs.

lol

So how long will you have to take the procrit you think before you

get a reprieve? I'm happy to hear it isn't making you as sick this

time around.

Hey speaking of being all dry and wrinkled (like me lol) try Ponds

and a facial buff puff, you'll be amazed at the difference in your

skin. I use the cleansing one (makeup remover) with the buff and

rinse, then mix the original moisturizer with a little cool water on

my face and wipe it off gently with a damp cool cloth. Works

wonders.

Take care,

Gayle

The nurse practitioner just called and my

4 week blood work shows the HCV is

> undetectable. She said that's great at this early stage.

>

> The bad news is my hemoglobin is 9.2 and she's going to order

Prescript to

> be delivered to me ASAP. I didn't realize that this is something I

would be

> injecting, but she explained that I'll do it weekly.

>

> The other issue is that I have had some soreness in my upper arm

and now

> some pain in my left shoulder. I feels like I might have slept on

it wrong

> or pulled something. It hurts more when I take a deep breath. I

told her

> that and she was quite concerned. I happen to have 2 appointments

tomorrow

> - my rheumatologist in the morning and the internist in the

afternoon so

> she's going to fax the report over to the internist. She told me if

it gets

> worse, I should go to the ER.

>

> While I'm excited about the good news, I'm concerned about the bad

news :-(

>

October 16, 2007

Oh good thought we lost you again hahaaa. Yeah the hair thing is really a

problem but my sister-in-law lost all her hair on chemo-therapy for breast

cancer. My hair is so thin it's almost funny. I will try the ponds sound like

a good idea, don't know when I can go off procrit but hopefully soon. Get tired

of pills and shots hope they don't need to add the other shot for the white

count. That one is slowly coming up but still very low. Very depressed right

now but it will pass lol. love and hugs..pat

Gayle <mollydamaula@...> wrote: Here I am!! (waving franticly)

Been down with a bad cold is all, but I'm still kicking. ;-)

Hey Tim, how's it feel to be on the upswing you lucky devil you!!!?

God I can't wait to feel better. lol I'm really glad for you.

Pat, my hair is thinning badly already at week 8 but my friends are

taking me wig shopping if it gets too bad. lol

I JUST started growing my hair out a half a year before starting this

and it's really killing me to see my newly aquired wavey locks

hanging off my brush.

Oh well... it'll grow back I'm sure and they make some lovely wigs.

lol

So how long will you have to take the procrit you think before you

get a reprieve? I'm happy to hear it isn't making you as sick this

time around.

Hey speaking of being all dry and wrinkled (like me lol) try Ponds

and a facial buff puff, you'll be amazed at the difference in your

skin. I use the cleansing one (makeup remover) with the buff and

rinse, then mix the original moisturizer with a little cool water on

my face and wipe it off gently with a damp cool cloth. Works

wonders.

Take care,

Gayle

The nurse practitioner just called and my

4 week blood work shows the HCV is

> undetectable. She said that's great at this early stage.

>

> The bad news is my hemoglobin is 9.2 and she's going to order

Prescript to

> be delivered to me ASAP. I didn't realize that this is something I

would be

> injecting, but she explained that I'll do it weekly.

>

> The other issue is that I have had some soreness in my upper arm

and now

> some pain in my left shoulder. I feels like I might have slept on

it wrong

> or pulled something. It hurts more when I take a deep breath. I

told her

> that and she was quite concerned. I happen to have 2 appointments

tomorrow

> - my rheumatologist in the morning and the internist in the

afternoon so

> she's going to fax the report over to the internist. She told me if

it gets

> worse, I should go to the ER.

>

> While I'm excited about the good news, I'm concerned about the bad

news :-(

>

October 16, 2007

Hey Ya'll, well if ya'll remember last week I had lost my meds. So I always take

my shot on Tuesdays, well due to the fact that they had to order me some more

meds, I couldn't take it til Thursday. No I have to take it again tonite, which

will be 5 dys. apart this time instead of 7. I'm real nervous about this I'm not

so sure what kind of side effects I'm gonna have. I already have real bad side

effects as it is now from the tx. I never in a million yrs. thought it would

make me this sick. I can hardly function. I can't work anymore, Iv'e had to move

in with my family, I have loss of memory & eye sight. Aneimia, hairloss,

weightloss, ulcers in my throat & mouth, thrush. Alot of pain in my hands, arms,

& legs. Jesus, I know theres more. I don't know if I can do this. Not to mention

all the emotional & mental effects. I was already crazy before the treatment, I

guess now I just certifiable. thanks for listening, I'm not so good with

talking to people.

patricia <pandas2@...> wrote: Oh good thought we lost you

again hahaaa. Yeah the hair thing is really a problem but my sister-in-law lost

all her hair on chemo-therapy for breast cancer. My hair is so thin it's almost

funny. I will try the ponds sound like a good idea, don't know when I can go off

procrit but hopefully soon. Get tired of pills and shots hope they don't need to

add the other shot for the white count. That one is slowly coming up but still

very low. Very depressed right now but it will pass lol. love and hugs..pat

Gayle <mollydamaula@...> wrote: Here I am!! (waving franticly)

Been down with a bad cold is all, but I'm still kicking. ;-)

Hey Tim, how's it feel to be on the upswing you lucky devil you!!!?

God I can't wait to feel better. lol I'm really glad for you.

Pat, my hair is thinning badly already at week 8 but my friends are

taking me wig shopping if it gets too bad. lol

I JUST started growing my hair out a half a year before starting this

and it's really killing me to see my newly aquired wavey locks

hanging off my brush.

Oh well... it'll grow back I'm sure and they make some lovely wigs.

lol

So how long will you have to take the procrit you think before you

get a reprieve? I'm happy to hear it isn't making you as sick this

time around.

Hey speaking of being all dry and wrinkled (like me lol) try Ponds

and a facial buff puff, you'll be amazed at the difference in your

skin. I use the cleansing one (makeup remover) with the buff and

rinse, then mix the original moisturizer with a little cool water on

my face and wipe it off gently with a damp cool cloth. Works

wonders.

Take care,

Gayle

The nurse practitioner just called and my

4 week blood work shows the HCV is

> undetectable. She said that's great at this early stage.

>

> The bad news is my hemoglobin is 9.2 and she's going to order

Prescript to

> be delivered to me ASAP. I didn't realize that this is something I

would be

> injecting, but she explained that I'll do it weekly.

>

> The other issue is that I have had some soreness in my upper arm

and now

> some pain in my left shoulder. I feels like I might have slept on

it wrong

> or pulled something. It hurts more when I take a deep breath. I

told her

> that and she was quite concerned. I happen to have 2 appointments

tomorrow

> - my rheumatologist in the morning and the internist in the

afternoon so

> she's going to fax the report over to the internist. She told me if

it gets

> worse, I should go to the ER.

>

> While I'm excited about the good news, I'm concerned about the bad

news :-(

>

October 16, 2007