Setback

[Guest guest]

hello Sue & Gidget:

I agree. Shortness of breath and chest pain are definitely worth seen your Doctor about.

Good luck

tedA

RE: [ ] dealing with a setback

Hi again. Well, it's not getting better around here and I am going to call the doctor in the morning whether Greg likes it or not. He has been having chest pains and pressure and shortness of breath, weakness, muscle aches, headache, nausea, anddiarrhea. i am not going to just sit here and wait for something to happen. i want a doctor to see him or at least to know what's going on. maybe this is normal, but i want the doctor to tell me that if it's true. If it's not true, then it's time to re-evaluate the situation and decide on a plan of action. Everyone take care.sue and gidget

[Guest guest]

Hi to Teda and all. I am sure glad all of you are there for all of us who have

hep c and those of us like me who are the partner of a hep c patient. I am

doing what i can to help Greg but if he continues to minimize symptoms and not

go to the doctor, there's not much i can do except love him and worry about him.

It is very frustrating but of course i am hanging in there for the duration.

thanks again to everyone. It'snice to know someone understands and cares.

Sue and gidget

[Guest guest]

Hello Sue & Gidget:

From where I stand you are doing all the right things you can do.

Love and support him and hope he will become a little more communicative as he gets to feeling better.

My wife tells me, men can be very cranky sometimes...

I hope things work out for you guys, despite your harrowing days.

Give Gidget a hug from me. I bet she is supportive in your time of frustration.

tedA

[Guest guest]

Sue,

If the symptoms get worse, I hope he will eventually realize that he

should be seen.... We will be here for you when you need us Sue........

Hang in there and I will be praying for a poitive outcome for you and

Greg....... Men are so stubborn when it comes to this type of thing....

So are women come to think of it. ;o I know I am...

Angel Hugs,

Diane

May Rainbow Dreams Color Your World With Love, Hope, Peace & Unity

[Guest guest]

For me, I've discovered that there is a difference between minimizing symptoms and accepting that there WILL be symptoms. I feel like a walking side effect and I get tired of talking about it. I'm on all the meds they can give me to reduce side effects...the rest is just sucking it up and sticking with it until I get my first viral load test next month. I feel for the caregivers - I know I drive my husband nuts.

-----Original Message-----From: Sue and Gidget [mailto:angelsusanne@...]Sent: Tuesday, January 21, 2003 12:59 PM Subject: Re: [ ] Re: setbackHi to Teda and all. I am sure glad all of you are there for all of us who have hep c and those of us like me who are the partner of a hep c patient. I am doing what i can to help Greg but if he continues to minimize symptoms and not go to the doctor, there's not much i can do except love him and worry about him. It is very frustrating but of course i am hanging in there for the duration. thanks again to everyone. It'snice to know someone understands and cares. Sue and gidget

[Guest guest]

hello to Teda and all. i am very happy to report that greg has been up, sitting

in the recliner, watching tv today, and he has even eaten meals today! He has a

horrendous headache, but this is the first Saturday since he began treatment

Jan. third where he could stay up. this is encouraging. His bloodwork that was

done jan. 17th was ok. he scared me last Monday with chest pain and pressure and

shortness of breath, and fluctuating blood pressure, but it is normal now. We

have a long way to go since he just did his fourth shot last night, but at least

today, it seems doable. Smiles.

Yes, gidget is a big help to me, and to Greg, too as she is a very loving

creature.

everyone have a good night.

sue and Gidget

[Guest guest]

Hi to dZ and all. Greg is doing pretty good now. He says his body aches,

especially his legs, but wow! This past weekend was the best yet since treatment

began jan. third. he gives blood again Friday. I hope it doesn't set him back as

it did on the 17th. Don't know why it did but it did.

everyone have a good day.

sue and gidget

[Guest guest]

I'm just back from my 2 week holiday.

Without LDN, I'd never have been able to go on holiday, but right now

I'm back where I started, 8-9 weeks ago.

Problem was the plane ride home.

It was a small propeller driven plane, and I could feel every single

vibration during the 90 minute flight. From the soles of my feet, right

up to my teeth.

I'm still tingling and shaking 6 days later, and the pains and spasms

in my legs, especially at night, have returned.

The LDN isn't helping right now.

Anybody else had an experience like this and any suggestions.

And what kind of mess is this that I've walked back into ?

I can't leave you children alone for five minutes.

Danny

[Guest guest]

Hi Danny,

Perhaps the problem with the flight was stress related. Stress can cause

set backs. Try soap in your bed at night for the spasms (not dove or dial)

set the bar(s) near the areas of the spasms.

Hang in there as time should take care of it. If it does not, then you

could try the mega dosage of 25mg for a week and then go back to normal.

This worked for someone on our site when she would get exasperations. It is

not the best thing to do, but it might be worth the try if things get

unbearable.

I will try and behave while you are away (I don't want a reduction in my

allowance).

My best

Aletha

[low dose naltrexone] Setback

> I'm just back from my 2 week holiday.

> Without LDN, I'd never have been able to go on holiday, but right now

> I'm back where I started, 8-9 weeks ago.

>

> Problem was the plane ride home.

> It was a small propeller driven plane, and I could feel every single

> vibration during the 90 minute flight. From the soles of my feet, right

> up to my teeth.

> I'm still tingling and shaking 6 days later, and the pains and spasms

> in my legs, especially at night, have returned.

> The LDN isn't helping right now.

>

> Anybody else had an experience like this and any suggestions.

>

> And what kind of mess is this that I've walked back into ?

> I can't leave you children alone for five minutes.

>

> Danny

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Aletha,

I've not heard about this 25mg dose, but then I'm new to this. I'll

certainly give it a try, but I'll need to get some more first.

I don't have much left just now.

I get mine delivered, in bottles of 150ml, monthly from a chemist

(pharmacy) in Glasgow. I'm going down there for an appointment with a

tame doctor next week, so if it hasn't eased by then, I'll get him

write a precription, and I'll pick up some extra from the chemist

while I'm there.

I don't think stress could be a problem, I had a good holiday, first

one in years, and when I got on that plane I was feeling fine.

I'm sure it was the vibration that triggered something.

I'll try that soap thing tonight.

What is the theory behind it ?

I've got some liquid soap here as well as bars..

I'll maybe try getting a " hand maiden " to rub it into my legs before

I go to bed tonight.

Your pocket money (allowance) is safe,

Danny

>

> Hi Danny,

>

> Perhaps the problem with the flight was stress related. Stress can

cause

> set backs. Try soap in your bed at night for the spasms (not dove

or dial)

> set the bar(s) near the areas of the spasms.

>

> Hang in there as time should take care of it. If it does not, then

you

> could try the mega dosage of 25mg for a week and then go back to

normal.

> This worked for someone on our site when she would get

exasperations. It is

> not the best thing to do, but it might be worth the try if things

get

> unbearable.

>

> I will try and behave while you are away (I don't want a reduction

in my

> allowance).

>

> My best

> Aletha

> [low dose naltrexone] Setback

>

>

> > I'm just back from my 2 week holiday.

> > Without LDN, I'd never have been able to go on holiday, but right

now

> > I'm back where I started, 8-9 weeks ago.

> >

> > Problem was the plane ride home.

> > It was a small propeller driven plane, and I could feel every

single

> > vibration during the 90 minute flight. From the soles of my feet,

right

> > up to my teeth.

> > I'm still tingling and shaking 6 days later, and the pains and

spasms

> > in my legs, especially at night, have returned.

> > The LDN isn't helping right now.

> >

> > Anybody else had an experience like this and any suggestions.

> >

> > And what kind of mess is this that I've walked back into ?

> > I can't leave you children alone for five minutes.

> >

> > Danny

[Guest guest]

Person with setback due to travel/plane trip...

My experience with travel and LDN has been this:

After having been on LDN for MS since Sept 2005 (along

with Copaxone for 8 yrs), I took a train trip from Oregon

to Central California (overnight on the train each way) in

March. I spent a week there and by the time I came home,

I either had quite a flare-up of symptoms or a small MS

episode. All symptoms increased - balance, fatigue (big

time), weakness, "walking through 8 inches of mud", pain, etc.

This is the 2nd time I've tried 25 mg LDN for 2 doses/nights

only for a flare-up and both times it has stopped the

flare-up the day after I take it (at night). By the time

I wake up and get started with my day, I'm already

feeling physically stronger, my legs are getting back to

working at the level they were before the flare, my balance

comes back, and aside from getting spasms in my calf muscles

easily for a couple days, in 2-3 days my strength and stamina

seem to return to what they were pre-flare-up.

By the way, LDN works GREAT for my MS. Not all symptoms

are gone, but the most troublesome ones for me (weakness,

balance, stamina, pain, brain fog, severe fatigue) are all being

helped by my being on LDN. I'll stay on it until they find

something better or a cure. Even if I didn't "feel" the

difference, my own belief is that it is normalizing my immune

system and keeping disease activity at bay...and so, keeping

the MS from progressing. However, that's just my own inter-

pretation.

I have also gone off Copaxone injections for MS now and have

been off them since April 2006 with no more flare-ups or

MS exacerbations.

Hope this info helps

[Guest guest]

,

I am on 4.5 mg of LDN-built upover the course of the passed month. I don't notice anything better but my bladder issues. What do you think about me trying 25mg for a couple of days. Currently, I get tired in the afternoon and need a few minutes to sleep (depending on my kids). I did get the chance to sleep almost an hour today. Yah!

I would really like my gait to be normal or at least better than it is. I was dx'ed with MS in 93. My walking hasn't been great for about 1 1?2 yrs now.

Any information from your experience would be great.

-- [low dose naltrexone] Re: Setback

Person with setback due to travel/plane trip...

My experience with travel and LDN has been this:

After having been on LDN for MS since Sept 2005 (along

with Copaxone for 8 yrs), I took a train trip from Oregon

to Central California (overnight on the train each way) in

March. I spent a week there and by the time I came home,

I either had quite a flare-up of symptoms or a small MS

episode. All symptoms increased - balance, fatigue (big

time), weakness, "walking through 8 inches of mud", pain, etc.

This is the 2nd time I've tried 25 mg LDN for 2 doses/nights

only for a flare-up and both times it has stopped the

flare-up the day after I take it (at night). By the time

I wake up and get started with my day, I'm already

feeling physically stronger, my legs are getting back to

working at the level they were before the flare, my balance

comes back, and aside from getting spasms in my calf muscles

easily for a couple days, in 2-3 days my strength and stamina

seem to return to what they were pre-flare-up.

By the way, LDN works GREAT for my MS. Not all symptoms

are gone, but the most troublesome ones for me (weakness,

balance, stamina, pain, brain fog, severe fatigue) are all being

helped by my being on LDN. I'll stay on it until they find

something better or a cure. Even if I didn't "feel" the

difference, my own belief is that it is normalizing my immune

system and keeping disease activity at bay...and so, keeping

the MS from progressing. However, that's just my own inter-

pretation.

I have also gone off Copaxone injections for MS now and have

been off them since April 2006 with no more flare-ups or

MS exacerbations.

Hope this info helps

[Guest guest]

,

Thanks for that reply.

I was advised to try 25ml by someone else in the group, but I didn't have enough left at the time to try it, and by the time my next delivery arrived, the worst had passed.

The problem was brought on by the vibration of the turbo-prop engines. I could feel every turn of the propellers from the soles of my feet right through to my teeth. Luckily it was only a 90 minute flight, but it left me with a 7 day hangover. All the pains and spasms in my legs that had disappeared when I first started LDN, came back with a vengeance. I felt so bad that I didn't notice if anything else had worsened.

I'd travelled out on the same type of plane 2 weeks earlier with no problems, maybe the second one was a bit older.

I was a bit worried about trying such a high dose, but I feel a lot happier having spoken to someone who's already done it. I'll make sure that I take enough with me next time, in case I need it after the first flight.

Danny

[low dose naltrexone] Re: Setback

Person with setback due to travel/plane trip...

My experience with travel and LDN has been this:

After having been on LDN for MS since Sept 2005 (along

with Copaxone for 8 yrs), I took a train trip from Oregon

to Central California (overnight on the train each way) in

March. I spent a week there and by the time I came home,

I either had quite a flare-up of symptoms or a small MS

episode. All symptoms increased - balance, fatigue (big

time), weakness, "walking through 8 inches of mud", pain, etc.

This is the 2nd time I've tried 25 mg LDN for 2 doses/nights

only for a flare-up and both times it has stopped the

flare-up the day after I take it (at night). By the time

I wake up and get started with my day, I'm already

feeling physically stronger, my legs are getting back to

working at the level they were before the flare, my balance

comes back, and aside from getting spasms in my calf muscles

easily for a couple days, in 2-3 days my strength and stamina

seem to return to what they were pre-flare-up.

By the way, LDN works GREAT for my MS. Not all symptoms

are gone, but the most troublesome ones for me (weakness,

balance, stamina, pain, brain fog, severe fatigue) are all being

helped by my being on LDN. I'll stay on it until they find

something better or a cure. Even if I didn't "feel" the

difference, my own belief is that it is normalizing my immune

system and keeping disease activity at bay...and so, keeping

the MS from progressing. However, that's just my own inter-

pretation.

I have also gone off Copaxone injections for MS now and have

been off them since April 2006 with no more flare-ups or

MS exacerbations.

Hope this info helps

[Guest guest]

,

" So think about what you did while away on your travels. "

That's very perceptive of you. There was something.

I once told a retired doctor that I was having problems with alcohol.

Hangovers out of all proportion to the quantity of alcohol consumed.

What the wise old doctor told me was that, alcohol in small

quantities was ok, but never to drink anything with alcohol in it,

unless I could see right through the glass.

And the only thing I should ever add to a drink was water.

Well, I kinda followed his advice and one after another I stopped

drinking red wine, beer, whisky and white wine until the only thing I

can now drink is vodka and water.

Sounds very boring, but if you persevere, you can actually enjoy it.

I now only take a very small glass occasionally, about 3 parts water

to 1 part vodka, and never more than once a week.

The day before I flew home, was the day of the football world cup

final (soccer to those who came to the game late). I was staying with

friends and during the game I had a small glass of vodka, just to

keep the others company.

The following day I felt fine, but it may have been that small amount

of alcohol, from the night before, combined with the vibration of the

engines, that caused the problem.

That would explain why I'd no problems during or after the outward

flight. No alcohol.

I wonder if anyone else has similar problems with alcohol

I'm going on another short holiday, on the same turbo-prop planes, in

3 weeks time.

This time I'll take enough LDN with me so that, if I have the same

problem again, I can take the 25ml doses that you recommended.

And there'll be no alcohol, before or during.

Boringly yours,

Danny

***********************************

***********************************

Danny -

Another thought about your trip...

When I began my trip - going down on the train to CA, I didn't

have any signs of problems, either. But, after being at my friend's

house for a week...I was cold most of the time, and the increased

activity from going places and doing things together, and the late

nights...it all caught up with me. By the time I was heading home,

I knew I had pushed myself - physically - too hard and I

thought it wouldn't surprise me if I had a small flare-up after I

got home.

On the train home I felt as if every nerve in my body was hanging

out BARE and RAW. My nerves were waaaay sensitive and I was

highly uncomfortable the whole way home. Though I traveled home

on the same train tracks I went down there on, my body handled

the trip very different on the way home. I had pushed

myself too hard and got too tired. I had lots of fun, but wasn't

taking as good care of myself as I do when I'm home...and it

caught up with me.

So think about what you did while away on your travels. You may find

you were somewhat like me and pushed yourself more than you

normally do at home. It may have caught up with you like it did me

and even if you returned on the very same plane you left on, you might

have had a different outcome for the reasons I've mentioned.

It's food for thought, anyway. Are you feeling better yet?

Do take care of you,

[Guest guest]

Danny

I can't drink any alcohol. I'm sick for days. (and i don't have ms) --

same thing with most medication-throws me thru a look.

cyndi

On Jul 22, 2006, at 10:48 AM, Danny (UK) wrote:

> ,

>

> " So think about what you did while away on your travels. "

>

> That's very perceptive of you. There was something.

>

> I once told a retired doctor that I was having problems with alcohol.

> Hangovers out of all proportion to the quantity of alcohol consumed.

> What the wise old doctor told me was that, alcohol in small

> quantities was ok, but never to drink anything with alcohol in it,

> unless I could see right through the glass.

> And the only thing I should ever add to a drink was water.

>

> Well, I kinda followed his advice and one after another I stopped

> drinking red wine, beer, whisky and white wine until the only thing I

> can now drink is vodka and water.

> Sounds very boring, but if you persevere, you can actually enjoy it.

> I now only take a very small glass occasionally, about 3 parts water

> to 1 part vodka, and never more than once a week.