Waiting for improvement. Any advice?

[Guest guest]

As I write this, I am nearly six months into LDN and six months into an

exacerbation. I imagine this one may be a permanent change for me by now.

I am numb on the left side with numbness in both feet. I feel mentally foggy

quite often. I am taking 3-mg LDN. I have missed a few doses, but basically

have taken this since Dec.19. The exacerbation started on Dec. 17.

I am doing the supplements that Dr. Lawrence recommends. With those, as

well, I have missed a few days. I am going to start BBD. Earlier in my

diagnosis, this plus juicing improved the symptoms.

I am getting weary of feeling so nasty. I am still walking, but feels as if

I am walking on stilts (and, at 5'11 " , that can be a bit intimidating!

LOL!). I feel I am short-changing my kids. I wonder if by my starting this

during an exacerbation it is taking longer to help? I also notice that

if/when I wake up around 3 in the morning, things feel normal with no

numbness at all. Anyone else do this? Weird! I does encourage me, though, to

know that the nerves are not " dead. "

Thoughts? Thanks for listening to yet another whine!

Sally in Indiana

[Guest guest]

> Good morning Sally

> It's been a long time since I heard from you and I am not happy at all to

> hear about your problems. it sounds to me like you have just entered the

> world of progressive m.s.

> Now I am no Dr. but this is how my progressive stage came on back in 96 and

> only until I started on ldn did the symptoms let up.

> Now I am kind of filling in the blanks here cause when you say you are six

> months into an exacerbation you say it as if you had one before .

> I never did as my symptoms always came on quickly and stayed for months and

> months

> until I got used to them.

> Anyway did you ever increase your dose to 4.5 and find out what would

> happen? Some even claim that cutting back helps, just a thought Sally, I

> wouldn't have been as patient as you and would have been changing as much as

> I could sooner.

> Good Luck with what ever you do.

> Reg.

>

> -------Original Message-------

>

> From: low dose naltrexone

> Date: 06/01/04 05:56:06

> low dose naltrexone

> Subject: [low dose naltrexone] Waiting for improvement. Any advice?

>

> As I write this, I am nearly six months into LDN and six months into an

> exacerbation. I imagine this one may be a permanent change for me by now.

>

> I am numb on the left side with numbness in both feet. I feel mentally foggy

> quite often. I am taking 3-mg LDN. I have missed a few doses, but basically

> have taken this since Dec.19. The exacerbation started on Dec. 17.

>

> I am doing the supplements that Dr. Lawrence recommends. With those, as

> well, I have missed a few days. I am going to start BBD. Earlier in my

> diagnosis, this plus juicing improved the symptoms.

>

> I am getting weary of feeling so nasty. I am still walking, but feels as if

> I am walking on stilts (and, at 5'11 " , that can be a bit intimidating!

> LOL!). I feel I am short-changing my kids. I wonder if by my starting this

> during an exacerbation it is taking longer to help? I also notice that

> if/when I wake up around 3 in the morning, things feel normal with no

> numbness at all. Anyone else do this? Weird! I does encourage me, though, to

> know that the nerves are not " dead. "

>

> Thoughts? Thanks for listening to yet another whine!

>

> Sally in Indiana

>

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

Sally,

Go up to 4.5mg to LDN for 6 months. Are you using capsule or liquid LDN? If

capsule, what is your filler? Liquid LDN at 4.5mg might be your best choice.

[Guest guest]

> Good morning Sally

> It's been a long time since I heard from you and I am not happy at all to

> hear about your problems. it sounds to me like you have just entered the

> world of progressive m.s.

> Now I am no Dr. but this is how my progressive stage came on back in 96 and

> only until I started on ldn did the symptoms let up.

> Now I am kind of filling in the blanks here cause when you say you are six

> months into an exacerbation you say it as if you had one before .

> I never did as my symptoms always came on quickly and stayed for months and

> months

> until I got used to them.

> Anyway did you ever increase your dose to 4.5 and find out what would

> happen? Some even claim that cutting back helps, just a thought Sally, I

> wouldn't have been as patient as you and would have been changing as much as

> I could sooner.

> Good Luck with what ever you do.

> Reg.

>

> -------Original Message-------

>

> From: low dose naltrexone

> Date: 06/01/04 05:56:06

> low dose naltrexone

> Subject: [low dose naltrexone] Waiting for improvement. Any advice?

>

> As I write this, I am nearly six months into LDN and six months into an

> exacerbation. I imagine this one may be a permanent change for me by now.

>

> I am numb on the left side with numbness in both feet. I feel mentally foggy

> quite often. I am taking 3-mg LDN. I have missed a few doses, but basically

> have taken this since Dec.19. The exacerbation started on Dec. 17.

>

> I am doing the supplements that Dr. Lawrence recommends. With those, as

> well, I have missed a few days. I am going to start BBD. Earlier in my

> diagnosis, this plus juicing improved the symptoms.

>

> I am getting weary of feeling so nasty. I am still walking, but feels as if

> I am walking on stilts (and, at 5'11 " , that can be a bit intimidating!

> LOL!). I feel I am short-changing my kids. I wonder if by my starting this

> during an exacerbation it is taking longer to help? I also notice that

> if/when I wake up around 3 in the morning, things feel normal with no

> numbness at all. Anyone else do this? Weird! I does encourage me, though, to

> know that the nerves are not " dead. "

>

> Thoughts? Thanks for listening to yet another whine!

>

> Sally in Indiana

>

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

Sally,

Go up to 4.5mg to LDN for 6 months. Are you using capsule or liquid LDN? If

capsule, what is your filler? Liquid LDN at 4.5mg might be your best choice.

[Guest guest]

Sally in Indiana,

I experience short"remissions" in the evenings also. It sounds like we have similar walking patterns.I'm still walking, if you can call it that.I'm very wobbly, but I move forward as long as the ground is FLAT and smooth.But back to the remission moments....mine happen about 9-10 pm and last until I go to sleep, but are gone in the am.My theory is that it may have something to do with the timing of endorfin production in the body. We do take the LDN about those hours for a reason, don't we?

I'm on LDN only about 6 weeks now.Sorry to hear about your exacerbation. How long ago was your ms dx? What is BBD?

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

From: low dose naltrexone

Date: Tuesday, June 01, 2004 06:54:10

low dose naltrexone

Subject: [low dose naltrexone] Waiting for improvement. Any advice?

As I write this, I am nearly six months into LDN and six months into an

exacerbation. I imagine this one may be a permanent change for me by now.

I am numb on the left side with numbness in both feet. I feel mentally foggy

quite often. I am taking 3-mg LDN. I have missed a few doses, but basically

have taken this since Dec.19. The exacerbation started on Dec. 17.

I am doing the supplements that Dr. Lawrence recommends. With those, as

well, I have missed a few days. I am going to start BBD. Earlier in my

diagnosis, this plus juicing improved the symptoms.

I am getting weary of feeling so nasty. I am still walking, but feels as if

I am walking on stilts (and, at 5'11", that can be a bit intimidating!

LOL!). I feel I am short-changing my kids. I wonder if by my starting this

during an exacerbation it is taking longer to help? I also notice that

if/when I wake up around 3 in the morning, things feel normal with no

numbness at all. Anyone else do this? Weird! I does encourage me, though, to

know that the nerves are not "dead."

Thoughts? Thanks for listening to yet another whine!

Sally in Indiana

[Guest guest]

Sorry to hear things aren`t so good!

Firstly, anecdotally, my impression is that LDN is more likely to help

resolve an exacerbation than extend it.

I notice that people have suggested increasing your LDN to 4.5mg. -If

that doesn`t help, personally, I found it advantageous to drop down to a

very low dose, (1.5mg) & then slowly increase it again?

I also found that taking Benfotiamine (lipid form of thiamine, vit B1) also

helped things very considerably! (however, apparently there is now a caution

about high doses of any form of B1 for anyone with cancer -not that it

causes it, rather that it may also aid tumour growth as it aids the body. -I

believe that the jury is still out on that one!)

Pre. LDN, I had already spent about 13 yrs applying a nutritional &

supplement approach to my MS (-no drugs) & while I didn`t manage to

completely stop the slow progression, I did seem to have quite considerable

success in " easing " the condition, so that I felt a lot more comfortable &

at ease, very much less sort of " toxic " (-my attempt at describing the

unpleasant experience when one is being exhausted by the apparent war going

on within the body!) I believe that this highly unpleasant " toxic war " going

on in the body can be very much related to food sensitivities that seem to

develop as the MS progresses. It would seem that there many common foods

which while they may not be not strictly ideal , the body IN GOOD HEALTH,

is able to utilize with apparently little or no negative repercussions:

Unfortunately this doesn`t seem to be the case once the workings of the

immune system have gone awry & the body is loosing it`s capacity to maintain

homeostasis. - It has been my experience that under these conditions, the

continuing consumption of many previously apparently innocuous foods can now

have a shockingly catastrophic effect on our well being!

Some years ago, I already had a growing list of foods to which I had become

aware that I was sensitive in this way. At this time, I was fortunate to be

given a copy of D`Adamo`s book " Eat Right for Your Type. " In this he

explains that he has developed a scientific basis for confirming

& extending his father`s conclusions regarding the suitability of various

foods for different blood group types. Interestingly, I noted that the foods

to which I already knew I was sensitive were listed in the " Avoid " group

for people with " O " type blood, so I enthusiastically set about integrating

his further " do`s & dont`s " in my diet! This provided a further improvement

to my sense of wellbeing!

After a few months, I remarked to my mother one day that I had been feeling

so much better since utilizing the blood group info. (she was also eating

very similarly, having had pancreatic cancer, about 11 years ago now.) She

responded that she hadn`t noticed any difference! This anomaly was cleared

up a while later: We had both been eating food appropiate for people with

" O " group blood, however it transpired that her blood was " A " group! Once

the necessary dietary adjustments were made, she also found that she felt

better! (-she`s still doing well! Cooking & shopping for me, at 83yrs of

age, I`m sad to say.........)

I consider that the imput from this book very important in that, without it,

one may easily decide to eat something " because it`s good for you " , when in

actual fact, -it isn`t! eg. -For about 8 years, we had been growing &

eating alfafa sprouts daily, -well, they`re good for you aren`t

they? -apparently NO! they`re not! -Not if you`re " O " group anyway!!

(-Highly Beneficial! though, IF you happen to be " A " group!) Similarly,

there are MANY other foods which, unknown to us, may be easing or

exacerbating our condition! In some instances these may be pretty obvious,

once we start to pay attention, others may be more subtle in their effect, &

so be less easy to evaluate, I believe that this makes " Eat Right for your

Type " a valuable resource: We cannot afford to unknowingly place unnecessary

strain on our systems, or unkowingly not avail ourselves of supportive

foods!

I also have utilized the info presented in Ashton Embrey`s " Best Bet Diet " &

supplement list. I think that he makes many remarkably clear & helpful

observations about MS.

A general dietary book that I have used is " Fit for Life " by Harvey &

lin Diamond: (I found the admonition to eat ONLY RAW FRUIT in the A.M.

to be particularly helpful!)

Obviously, the information sources I have mentioned are not all integrated

in their approach or opinions!.................I wish!!!...............So

attempting to completely integrate them rationally may prove to be a highly

challenging or impossible task!!! However, it has been my experience that,

over time, if one doesn`t panic & instead allows the occasional sense of

bewilderment/overload to subside naturally, there is a great deal that will

gradually be gained by the assimilation of such information!

DO WHAT WORKS!.................(for you!)

After my diagnosis (their one strength!) & on developing a sense of how

little the mainstream " health care providers " (-?!!!) actually understood

about either the successful management of MS, or the value of a skillful

dietary/nutritional supplement approach, I avoided all contact with Drs. or

hospitals for over 10 years! (-I considered that I could do without their

imput or influence while I was attempting to develop a more holistic

approach!) I do accept that this could be seen as a rather extreme approach!

Fortunately nothing else went wrong with the body during this period! (-If

something else, within their area of expertise HAD cropped up, I would

probably have been there like a shot!) The advantage of my approach was

that, attempting to evaluate the effects of dietary changes & the efficacy

or otherwise of various nutritional supplements is subtle & challenging

work, I don`t think that it would have been made any easier (quite the

opposite!) if my attention had been undermined or distracted by either the

medico`s doubts or the near endless kaleidoscope of side effects apparently

produced by almost all pharmaceuticals!

I too have found (for many years) that I seem to be at my best " in the small

hours " ! -Inconvenient, isn`t it?! (I am writing this at 4.45 am......)

Hoping that maybe you will find something here that is useful to you & that

you continue to persevere with the LDN, medically it does seem to be our

best shot at present, though it`s successful integration does seem to be

challenging for many of us: Myself included!

Inevitably,things DO go on changing, however stuck they seem to be, so it`s

up to us to try & exploit this characteristic of change as wisely as

possible! Also I think it`s worth reminding ourselves that the primary

attribute of LDN is said to be the stopping of progression.

Best Wishes!

Gerald (SPMS)

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

From: " Jeff & Sally " <jsmoore@...>

<low dose naltrexone >

Sent: Tuesday, June 01, 2004 12:51 PM

Subject: [low dose naltrexone] Waiting for improvement. Any advice?

> As I write this, I am nearly six months into LDN and six months into an

> exacerbation. I imagine this one may be a permanent change for me by now.

>

> I am numb on the left side with numbness in both feet. I feel mentally

foggy

> quite often. I am taking 3-mg LDN. I have missed a few doses, but

basically

> have taken this since Dec.19. The exacerbation started on Dec. 17.

>

> I am doing the supplements that Dr. Lawrence recommends. With those, as

> well, I have missed a few days. I am going to start BBD. Earlier in my

> diagnosis, this plus juicing improved the symptoms.

>

> I am getting weary of feeling so nasty. I am still walking, but feels as

if

> I am walking on stilts (and, at 5'11 " , that can be a bit intimidating!

> LOL!). I feel I am short-changing my kids. I wonder if by my starting this

> during an exacerbation it is taking longer to help? I also notice that

> if/when I wake up around 3 in the morning, things feel normal with no

> numbness at all. Anyone else do this? Weird! I does encourage me, though,

to

> know that the nerves are not " dead. "

>

> Thoughts? Thanks for listening to yet another whine!

>

> Sally in Indiana

>

>

>

>

>

>

>

[Guest guest]

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

From: " Bayuk " <tbayuk@...>

" A Home away from Home a MS Support Board "

<AHomeawayfromHomeaMSSupportBoard@...>;

<mscured >; <MS-Christians >;

<MSersLife >; <MSfriends >;

<MSViews_Multiple_Sclerosis >

Sent: Wednesday, June 02, 2004 8:24 AM

Subject: Fw: [low dose naltrexone] Waiting for improvement. Any advice?

>

> ----- Original Message -----

> From: " gerald rollason " <grollason@...>

> <low dose naltrexone >

> Sent: Tuesday, June 01, 2004 10:26 PM

> Subject: Re: [low dose naltrexone] Waiting for improvement. Any advice?

>

>

> > Sorry to hear things aren`t so good!

> >

> > Firstly, anecdotally, my impression is that LDN is more likely to help

> > resolve an exacerbation than extend it.

> > I notice that people have suggested increasing your LDN to 4.5mg. -If

> > that doesn`t help, personally, I found it advantageous to drop down to a

> > very low dose, (1.5mg) & then slowly increase it again?

> > I also found that taking Benfotiamine (lipid form of thiamine, vit B1)

> also

> > helped things very considerably! (however, apparently there is now a

> caution

> > about high doses of any form of B1 for anyone with cancer -not that it

> > causes it, rather that it may also aid tumour growth as it aids the

> body. -I

> > believe that the jury is still out on that one!)

> >

> > Pre. LDN, I had already spent about 13 yrs applying a nutritional &

> > supplement approach to my MS (-no drugs) & while I didn`t manage to

> > completely stop the slow progression, I did seem to have quite

> considerable

> > success in " easing " the condition, so that I felt a lot more comfortable

&

> > at ease, very much less sort of " toxic " (-my attempt at describing the

> > unpleasant experience when one is being exhausted by the apparent war

> going

> > on within the body!) I believe that this highly unpleasant " toxic war "

> going

> > on in the body can be very much related to food sensitivities that seem

to

> > develop as the MS progresses. It would seem that there many common foods

> > which while they may not be not strictly ideal , the body IN GOOD

HEALTH,

> > is able to utilize with apparently little or no negative repercussions:

> > Unfortunately this doesn`t seem to be the case once the workings of the

> > immune system have gone awry & the body is loosing it`s capacity to

> maintain

> > homeostasis. - It has been my experience that under these conditions,

the

> > continuing consumption of many previously apparently innocuous foods can

> now

> > have a shockingly catastrophic effect on our well being!

> > Some years ago, I already had a growing list of foods to which I had

> become

> > aware that I was sensitive in this way. At this time, I was fortunate to

> be

> > given a copy of D`Adamo`s book " Eat Right for Your Type. " In this

> he

> > explains that he has developed a scientific basis for confirming

> > & extending his father`s conclusions regarding the suitability of

various

> > foods for different blood group types. Interestingly, I noted that the

> foods

> > to which I already knew I was sensitive were listed in the " Avoid "

group

> > for people with " O " type blood, so I enthusiastically set about

> integrating

> > his further " do`s & dont`s " in my diet! This provided a further

> improvement

> > to my sense of wellbeing!

> > After a few months, I remarked to my mother one day that I had been

> feeling

> > so much better since utilizing the blood group info. (she was also

eating

> > very similarly, having had pancreatic cancer, about 11 years ago now.)

She

> > responded that she hadn`t noticed any difference! This anomaly was

cleared

> > up a while later: We had both been eating food appropiate for people

with

> > " O " group blood, however it transpired that her blood was " A " group!

Once

> > the necessary dietary adjustments were made, she also found that she

felt

> > better! (-she`s still doing well! Cooking & shopping for me, at 83yrs of

> > age, I`m sad to say.........)

> > I consider that the imput from this book very important in that, without

> it,

> > one may easily decide to eat something " because it`s good for you " , when

> in

> > actual fact, -it isn`t! eg. -For about 8 years, we had been growing &

> > eating alfafa sprouts daily, -well, they`re good for you aren`t

> > they? -apparently NO! they`re not! -Not if you`re " O " group anyway!!

> > (-Highly Beneficial! though, IF you happen to be " A " group!) Similarly,

> > there are MANY other foods which, unknown to us, may be easing or

> > exacerbating our condition! In some instances these may be pretty

obvious,

> > once we start to pay attention, others may be more subtle in their

effect,

> &

> > so be less easy to evaluate, I believe that this makes " Eat Right for

your

> > Type " a valuable resource: We cannot afford to unknowingly place

> unnecessary

> > strain on our systems, or unkowingly not avail ourselves of supportive

> > foods!

> >

> > I also have utilized the info presented in Ashton Embrey`s " Best Bet

Diet "

> &

> > supplement list. I think that he makes many remarkably clear & helpful

> > observations about MS.

> > A general dietary book that I have used is " Fit for Life " by Harvey &

> > lin Diamond: (I found the admonition to eat ONLY RAW FRUIT in the

A.M.

> > to be particularly helpful!)

> >

> > Obviously, the information sources I have mentioned are not all

integrated

> > in their approach or opinions!.................I

wish!!!...............So

> > attempting to completely integrate them rationally may prove to be a

> highly

> > challenging or impossible task!!! However, it has been my experience

> that,

> > over time, if one doesn`t panic & instead allows the occasional sense of

> > bewilderment/overload to subside naturally, there is a great deal that

> will

> > gradually be gained by the assimilation of such information!

> > DO WHAT WORKS!.................(for you!)

> >

> > After my diagnosis (their one strength!) & on developing a sense of how

> > little the mainstream " health care providers " (-?!!!) actually understood

> > about either the successful management of MS, or the value of a skillful

> > dietary/nutritional supplement approach, I avoided all contact with Drs.

> or

> > hospitals for over 10 years! (-I considered that I could do without

their

> > imput or influence while I was attempting to develop a more holistic

> > approach!) I do accept that this could be seen as a rather extreme

> approach!

> > Fortunately nothing else went wrong with the body during this period!

(-If

> > something else, within their area of expertise HAD cropped up, I would

> > probably have been there like a shot!) The advantage of my approach was

> > that, attempting to evaluate the effects of dietary changes & the

> efficacy

> > or otherwise of various nutritional supplements is subtle & challenging

> > work, I don`t think that it would have been made any easier (quite the

> > opposite!) if my attention had been undermined or distracted by either

the

> > medico`s doubts or the near endless kaleidoscope of side effects

> apparently

> > produced by almost all pharmaceuticals!

> >

> > I too have found (for many years) that I seem to be at my best " in the

> small

> > hours " ! -Inconvenient, isn`t it?! (I am writing this at 4.45 am......)

> >

> > Hoping that maybe you will find something here that is useful to you &

> that

> > you continue to persevere with the LDN, medically it does seem to be our

> > best shot at present, though it`s successful integration does seem to be

> > challenging for many of us: Myself included!

> > Inevitably,things DO go on changing, however stuck they seem to be, so

> it`s

> > up to us to try & exploit this characteristic of change as wisely as

> > possible! Also I think it`s worth reminding ourselves that the primary

> > attribute of LDN is said to be the stopping of progression.

> >

> > Best Wishes!

> >

> > Gerald (SPMS)

> >

> >

> > ----- Original Message -----

> > From: " Jeff & Sally " <jsmoore@...>

> > <low dose naltrexone >

> > Sent: Tuesday, June 01, 2004 12:51 PM

> > Subject: [low dose naltrexone] Waiting for improvement. Any advice?

> >

> >

> > > As I write this, I am nearly six months into LDN and six months into

an

> > > exacerbation. I imagine this one may be a permanent change for me by

> now.

> > >

> > > I am numb on the left side with numbness in both feet. I feel mentally

> > foggy

> > > quite often. I am taking 3-mg LDN. I have missed a few doses, but

> > basically

> > > have taken this since Dec.19. The exacerbation started on Dec. 17.

> > >

> > > I am doing the supplements that Dr. Lawrence recommends. With those,

as

> > > well, I have missed a few days. I am going to start BBD. Earlier in my

> > > diagnosis, this plus juicing improved the symptoms.

> > >

> > > I am getting weary of feeling so nasty. I am still walking, but feels

as

> > if

> > > I am walking on stilts (and, at 5'11 " , that can be a bit intimidating!

> > > LOL!). I feel I am short-changing my kids. I wonder if by my starting

> this

> > > during an exacerbation it is taking longer to help? I also notice that

> > > if/when I wake up around 3 in the morning, things feel normal with no

> > > numbness at all. Anyone else do this? Weird! I does encourage me,

> though,

> > to

> > > know that the nerves are not " dead. "

> > >

> > > Thoughts? Thanks for listening to yet another whine!

> > >

> > > Sally in Indiana

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Hi Sally,

How are you doing now???

Hope things are much better!

Bev. J.

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

From: low dose naltrexone

Date: Tuesday, June 01, 2004 07:54:01

low dose naltrexone

Subject: [low dose naltrexone] Waiting for improvement. Any advice?

As I write this, I am nearly six months into LDN and six months into anexacerbation. I imagine this one may be a permanent change for me by now.I am numb on the left side with numbness in both feet. I feel mentally foggyquite often. I am taking 3-mg LDN. I have missed a few doses, but basicallyhave taken this since Dec.19. The exacerbation started on Dec. 17.I am doing the supplements that Dr. Lawrence recommends. With those, aswell, I have missed a few days. I am going to start BBD. Earlier in mydiagnosis, this plus juicing improved the symptoms.I am getting weary of feeling so nasty. I am still walking, but feels as ifI am walking on stilts (and, at 5'11", that can be a bit intimidating!LOL!). I feel I am short-changing my kids. I wonder if by my starting thisduring an exacerbation it is taking longer to help? I also notice thatif/when I wake up around 3 in the morning, things feel normal with nonumbness at all. Anyone else do this? Weird! I does encourage me, though, toknow that the nerves are not "dead."Thoughts? Thanks for listening to yet another whine!Sally in Indiana