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Karin,

First of all know I am praying for the best for you. I too have MS and I just found LDN this year and started it 6/06. I have extreme leg contracture's. My walking is the pits but I am not in a chair. I can't cook, do dishes or clean my house. I do work part-time for a doctor that knows and sees my condition but when I am home I do nothing but sit. My husband and 9 & 10 yr old do any shopping-grocery or any other that my family needs. No muscle relaxer in the world that I have tried helps in any way.

I am sure that you can have problems like you are having with any of the MS drugs you mentioned. It's easier for the neuro to say what he did. I naturally think you are feeling 100% like anyone would in your position. Is he the one that prescribed the LDN to you? Maybe you are having an exacerbation that's just going on and on. You'll have to make a decision indecently if you think LDN is the right drug or not, I imagine you do, find another doctor to give you the script-they are out there.

Good luck with the MRI-they make me nervous too-not that it changes anything -it's like why bother with them? We know how we feel. I wish you the best of luck making this call.

-- [low dose naltrexone] Need some words of wisdom from everyone

Hi gang- I'm Very upset right now so forgive any unkind words thatmay slip...... My husband whom I love dearly was supportive of me giving LDNa try back in 04 after a severe exacerbation in 02. Well,as Iwas very happy going off all the CRABS and not having anymore ofthe horrible side effects I thought LDN WAS THE GREATEST!Here we are in late 06 and I'm starting to have terrible legcontractions and I couldn't even get more than 4-5 hrs of sleep.I chalked it up to sitting in this Damn wheelchair all day,laying in one position all night, and 100% lack of any physicaltherapy/movement. In the last many weeks I noticed my strengthand rom really declining. My husband also kept commenting onhow loaded I was sounding (never mind the fact I was reallytaking more Baclofen/Zanaflex in recent weeks to stop the legcontractions which effects my speech) Anyway, I finally cavedin and made an appt. w/my neuro. What do you think he said? Ihad gotten worse since my last visit and the LND or whateverdrug I was taking wasn't holding the MS at bay (The A-holedidn't even know how to say LDN!! He immediately asked me tostop taking it and said get back on the CRABS, any one I wantedbut do it!! He ordered a new MRI and blood work. I crieduncontrollably for hours. Now I don't know what to do,Avonex,Beta Seron, Copaxone, Rebif, Tysabri? Help me out hereplease. Please pray that the MRI doesn't show a worsening in thedisease.Thanks,Karin

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Hello , I am a returnee to the LDN sight. I have been using LDN for 3 1/2 yrs. My advice to you is to drop to 3mgs and see if you still have the stiffness. To make 3mgs from your 4.5mgs Take 2 of your 4,5mgs , cut the top or open into 9 oz of water, Now you have 9mgs of LDN or 3 nights worth.Take 3mgs with a syringe dropper.(you get get at pharmacy in baby dept, or ask pharmacist)

Also, are you taking Calcium/magnesium in the evening? This may help with leg cramps, just drink a whole glass of water with it to flush through.

Only Copaxone can be taken with LDN. Kiki

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You have my prayers. This reminds me, though, of a question I've not yet asked here, because I haven't checked the archives first as I know I should do--is it true that you can take copaxone and LDN at the same time, without them cancelling each other out? I'm on copaxone now (and doing well on it, though I was only diagnosed this May) but if possible, I'd like to add LDN without dropping the copaxone.

If it's true that you can take both without any loss in efficacy, that might be a solution for both of us!

-E House

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>

> Hi gang-

>   I'm Very upset right

now so forgive any unkind

words that

> may slip......

>  

> My husband whom I love

dearly was supportive of

me giving LDN

> a try back in 04 after a

severe exacerbation in

02.  Well,as I

> was very happy going off

all the CRABS and not

having anymore of

> the horrible side

effects I thought LDN WAS

THE GREATEST!

> Here we are in late 06

and I'm starting to have

terrible leg

> contractions and I

couldn't even get more

than 4-5 hrs of sleep.

> I chalked it up to

sitting in this Damn

wheelchair all day,

> laying in one position

all night, and 100% lack

of any physical

> therapy/movement. In

the last many weeks I

noticed my strength

> and rom really

declining. My husband

also kept commenting on

> how loaded I was

sounding (never mind the

fact I was really

> taking more

Baclofen/Zanaflex in

recent weeks to stop the

leg

> contractions which

effects my speech)

Anyway, I finally caved

> in and made an appt.

w/my neuro. What do you

think he said? I

> had gotten worse since

my last visit and the LND

or whatever

> drug I was taking wasn't

holding the MS at bay (The

A-hole

> didn't even know how to

say LDN!! He immediately

asked me to

> stop taking it and said

get back on the CRABS, any

one I wanted

> but do it!! He ordered

a new MRI and blood work.

I cried

> uncontrollably for

hours. Now I don't know

what to do,

> Avonex,Beta Seron,

Copaxone, Rebif, Tysabri?

Help me out here

> please.

>

> Please pray that the MRI

doesn't show a worsening

in the

> disease.

>

> Thanks,

>

Karin

>

===========

If you choose a CRAB drug,

choose Copaxone, you can

still take LDN. I'm going

to make some suggestions.

Get Dr. Atkins low carb

diet book, Atkins Diet

Revoution and eliminate

from that diet all dairy,

gluten, any wheat that

might be allowed, no soy,

no sugar(use Stevia

sweetener). Get all

organic meats and eggs, no

steroid or antibiotic

tainted meats/eggs. No

meats that have been sugar

cured. The lower you go

in carbs the better off

you'll be. Expect a detox

of possible hives, fever,

headache, nausea, extra

fatgue, etc. Welcome

these symptoms as healing.

Supplements you want to

add to the diet.

A good quality probiotic

(acidophius)-take 4 per

day.

Lauricidin(do google

search)

Oil of Oregano

Olive Leaf Extract

Garlinase(do google

search)--take 2 in AM, 2

at noon and 2 at supper.

L-Lysine 500mg-take as

directed

For spastic muscles...this

is very expensive but it

works for me when I get

dosage as high as 12,000mg

a day. Check into Bill

Rich's MSM, I feel his is

the best quality MSM

available. Do a google

search. I used the

torpedo tablets, you may

want the powder. I

started for 3 days with

1000mg of Rich's MSM and

for better absorption take

with the MSM 1000mg of

Ester C, make sure the

Vitamin C is buffered,

then after 3 days I upped

to 2000mg of MSM and

1000mg Ester C for 4 days,

then upped to 3000mg of

MSM and 2000mg of Ester C

for 4 to 5, then up to

4000mg MSM and 2000mg of

Ester C, 5000mg of MSM and

3000mg Ester C, on up and

up. In the higher ranges

like 10,000mg of MSM I

took 5000mg MSM and 3000mg

Ester C in AM and the same

in PM. You do not want to

increase MSM dose too

fast, it will cause a

severe detox. If your

urine starts smelling

bad/strong that's a good

sign, you are flushing out

bad toxins.

I don't know where you get

your LDN prescribed but

make positively sure it is

made by a reputable

compounding pharmacy and

that absolutely NO calcium

carbonate is being used as

a filler, make sure your

pharmacy uses Pure

Naltrexone Powder and that

they are not crushing the

50mg Naltreone tablets.

You may want to be on

3.0mg for awhile to see if

your spasticity dies

down. 4.5mg may be

contributing to the

spasticity.

Make a deal with your

doctor and husband that

you will go on Copaxone as

long as you get to

continue with LDN, no LDN,

no CRAB's. And if the

neuro won't write the LDN

script refuse his CRAB's.

Where do you live and

where do yo get your LDN?

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, I'm curious if you have taken any type of poll or if you are keeping some type of database showing the efficacy of these suggestions with a group of people. Your suggestions are interesting, but I wonder if they take into consideration the history or any current diets/supplements/medical history of the folks that you are making these suggestions to. I would love to see posts from those who follow these protocols and benefit from them.

> >> > Hi gang-> > I'm Very upset right > now so forgive any unkind > words that> > may slip......> > > > My husband whom I love > dearly was supportive of > me giving LDN> > a try back in 04 after a > severe exacerbation in > 02. Well,as I> > was very happy going off > all the CRABS and not > having anymore of> > the horrible side > effects I thought LDN WAS > THE GREATEST!> > Here we are in late 06 > and I'm starting to have > terrible leg> > contractions and I > couldn't even get more > than 4-5 hrs of sleep.> > I chalked it up to > sitting in this Damn > wheelchair all day,> > laying in one position > all night, and 100% lack > of any physical> > therapy/movement. In > the last many weeks I > noticed my strength> > and rom really > declining. My husband > also kept commenting on> > how loaded I was > sounding (never mind the

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Karin,

My neuro said it is okay to take LDN with Copaxone, and that it has fewer side effects than the others. So maybe you could start Copaxone and still stay on the LDN?

Hope you are feeling better.

Joyce

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>

>

>

> , I'm curious if

you have taken any type of

poll or if you are

> keeping some type of

database showing the

efficacy of these

suggestions

> with a group of people.

Your suggestions are

interesting, but I wonder

> if they take into

consideration the history

or any current

>

diets/supplements/medical

history of the folks that

you are making these

> suggestions to. I would

love to see posts from

those who follow these

> protocols and benefit

from them.

>

=========

Dave,

The only ones I've seen

benefit from the sugar

free, soy free, gluten

free, dairy free, the very

low carb diet and

supplements combined are

the adult parents of Dr.

McCandless' autistic

kids....these parents and

or grandparents have MS,

Crohn's, IBS, Fibro, CFS,

etc and are very willing

to drastically change

their diet because of the

positive outcome of most

of their autistic child or

grandchild on this diet.

Like McCandless has said

to me many times, it's

hard to get an adult with

MS, Crohn's, IBS, etc to

change their diet to such

drastic measures. But it

has done much good for

those adult

parents/grandparents with

autoimmune system diseases

when they changed to this

type diet. There's an

entire family on

McCandless' forum who do

not take LDN but they do

the GF/SF/CF/SF diet and

all have improved. So

far, I don't think anyone

from this group has given

forth too much of an

effort on this diet

protocol except for me and

possibly one or two

others. It can take 6

months or more for gluten

to start getting out of

one's system. I'm one who

really stuck to the strict

diet and supplements for

more than a year and then

I changed to a more raw

veggie, raw nuts, steamed

veggie, fruits, limited

fish and turkey weekly, no

red meat for a year type

diet and combining my

foods correctly for easier

digestion and not drinking

with my meals and

continuing with the

supplements.

If I see that I'm back-

tacking in any way I will

return to the strict low

carb diet.

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>

> Hello , I am a

returnee to the LDN sight.

I have been using LDN for

3

> 1/2 yrs. My advice to

you is to drop to 3mgs and

see if you still have the

> stiffness. To make 3mgs

from your 4.5mgs Take 2 of

your 4,5mgs , cut the top

or

> open into 9 oz of water,

Now you have 9mgs of LDN

or 3 nights worth.Take

3mgs

> with a syringe dropper.

(you get get at pharmacy

in baby dept, or ask

> pharmacist)

>

> Also, are you taking

Calcium/magnesium in the

evening? This may help

with

> leg cramps, just drink a

whole glass of water with

it to flush through.

>

>

>

> Only Copaxone can be

taken with LDN. Kiki

>

==========

Kiki,

Welcome back. Folks, Kiki

is a patient of Dr. B's

and has been on LDN a good

while. Nice to see some

oldies return.

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> =========

>

> Dave,

>

> The only ones I've seen

> benefit from the sugar

> free, soy free, gluten

> free, dairy free, the very

> low carb diet and

> supplements combined are

> the adult parents of Dr.

> McCandless' autistic

> kids....these parents and

> or grandparents have MS,

> Crohn's, IBS, Fibro, CFS,

> etc and are very willing

> to drastically change

> their diet because of the

> positive outcome of most

> of their autistic child or

> grandchild on this diet.

> Like McCandless has said

> to me many times, it's

> hard to get an adult with

> MS, Crohn's, IBS, etc to

> change their diet to such

> drastic measures. But it

> has done much good for

> those adult

> parents/grandparents with

> autoimmune system diseases

> when they changed to this

> type diet. There's an

> entire family on

> McCandless' forum who do

> not take LDN but they do

> the GF/SF/CF/SF diet and

> all have improved. So

> far, I don't think anyone

> from this group has given

> forth too much of an

> effort on this diet

> protocol except for me and

> possibly one or two

> others. It can take 6

> months or more for gluten

> to start getting out of

> one's system. I'm one who

> really stuck to the strict

> diet and supplements for

> more than a year and then

> I changed to a more raw

> veggie, raw nuts, steamed

> veggie, fruits, limited

> fish and turkey weekly, no

> red meat for a year type

> diet and combining my

> foods correctly for easier

> digestion and not drinking

> with my meals and

> continuing with the

> supplements.

>

> If I see that I'm back-

> tacking in any way I will

> return to the strict low

> carb diet.

>

>

>

It's taken me awhile but I'm pretty much on track with the

GF/SF/CF/SF diet. Last week I eliminated the last diary food from my

shopping list. I'm hoping my efforts will improve LDN's performance.

One problem I'm finding is the speciality/organic foods are more

expensive than what's found in a regular grocery store. May have to

rob a bank or win the lottery in order to eat healthier.

On another note, I plan on taking 4-AP just as soon as I get the

prescription from my neurologist. Will use Skip's to fill it. Anyone

have any feedback/experience with this? Heard it's supposed to help

one walk better.

Artie

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> One problem I'm finding

is the speciality/organic

foods are more

> expensive than what's

found in a regular grocery

store. May have to

> rob a bank or win the

lottery in order to eat

healthier.

> Artie

========

Art,

The most important foods

to buy organic is meats

and eggs and yes, quite

expensive. It's the

growth hormones and

antibitics in the meats

and eggs that fuel yeast

and suppress and weaken

the immune system.

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Art,

Here is a recipe for a food bath that rids 'grocery' foods of

pesticides,parasites, bacteria, and other contaminants:

1 tsp Clorox bleach to 1 gallon of purified, ozonated or

electrolte-enhanced water (must be Clorox brand)

soak leafy vegetables 15 minutes

other vegetables and fruits 30 minutes

poultry, fish, meat (not ground meats) and eggs 20 minutes

After soaking, remove from the bath and place in clear water for 10

minutes. Rinse, dry thoroughly and store. The oxygenating process is

reported to freshen 'shriveled' fruits and tenderize meat, enhance

natural flavors and make food last up to two weeks longer in the

refrigerator.

>

>

> > One problem I'm finding

> is the speciality/organic

> foods are more

> > expensive than what's

> found in a regular grocery

> store. May have to

> > rob a bank or win the

> lottery in order to eat

> healthier.

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So sorry about all this. I would do a phone consultation with Dr.

Bihari immediately. His assistant's name is Bill and the number is 212-

929-4196. It will probably run $500, but he's a wonderful human being

and the first to use LDN to treat MS.

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Karin, are you taking any supplements? I forgot to mention this

before. Dr. Lawrence in the UK recommends very specific supplements

for spasticity, including calcium, magnesium, MSM and GABA. Since

taking GABA, my leg spasms have definitely decreased. I THINK cutting

down on wheat has helped too. If you'd like the supplement amounts,

please e-mail me directly.

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Drastic is the key word, it's a huge change. Personally, I could never do it, I guess I'm either too set in my ways, or else I'm not 'bad off' enough to resort to such drastic measures. Interesting you say that the parents of autistic kids have those issues, does Dr McCandless know the ratio of autistic kids with , for lack of a better word, diseased parents, and do you or her know exactly what benefits these parents are getting?> Dave,> > The only ones I've seen > benefit from the sugar > free, soy free, gluten > free, dairy free, the very > low carb diet and > supplements combined are > the adult parents of Dr. > McCandless' autistic > kids....these parents and > or grandparents have MS, > Crohn's, IBS, Fibro, CFS, > etc and are very willing > to drastically change > their diet because of the > positive outcome of most > of their autistic child or > grandchild on this diet. > Like McCandless has said > to me many times, it's > hard to get an adult with > MS, Crohn's, IBS, etc to > change their diet to such > drastic measures. But it > has done much good for > those adult > parents/grandparents with > autoimmune system diseases > when they changed to this > type diet. There's an > entire family on > McCandless' forum who do > not take LDN but they do > the GF/SF/CF/SF diet and > all have improved. So > far, I don't think anyone > from this group has given > forth too much of an > effort on this diet > protocol except for me and > possibly one or two > others. It can take 6 > months or more for gluten > to start getting out of > one's system. I'm one who > really stuck to the strict > diet and supplements for > more than a year and then > I changed to a more raw > veggie, raw nuts, steamed > veggie, fruits, limited > fish and turkey weekly, no > red meat for a year type > diet and combining my > foods correctly for easier > digestion and not drinking > with my meals and > continuing with the > supplements. > > If I see that I'm back-> tacking in any way I will > return to the strict low > carb diet.> > >

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Hi Karin, sounds like the Baclofen is working against the LDN. One is trying to make your leg move, and the other is trying to make it stop!!! It seems to me that Millar knows quite a bit about Baclofen.>> Hi gang-> I'm Very upset right now so forgive any unkind words that> may slip......> > My husband whom I love dearly was supportive of me giving LDN> a try back in 04 after a severe exacerbation in 02. Well,as I> was very happy going off all the CRABS and not having anymore of> the horrible side effects I thought LDN WAS THE GREATEST!> Here we are in late 06 and I'm starting to have terrible leg> contractions and I couldn't even get more than 4-5 hrs of sleep.> I chalked it up to sitting in this Damn wheelchair all day,> laying in one position all night, and 100% lack of any physical> therapy/movement. In the last many weeks I noticed my strength> and rom really declining. My husband also kept commenting on> how loaded I was sounding (never mind the fact I was really> taking more Baclofen/Zanaflex in recent weeks to stop the leg> contractions which effects my speech) Anyway, I finally caved> in and made an appt. w/my neuro. What do you think he said? I> had gotten worse since my last visit and the LND or whatever> drug I was taking wasn't holding the MS at bay (The A-hole> didn't even know how to say LDN!! He immediately asked me to> stop taking it and said get back on the CRABS, any one I wanted> but do it!! He ordered a new MRI and blood work. I cried> uncontrollably for hours. Now I don't know what to do,> Avonex,Beta Seron, Copaxone, Rebif, Tysabri? Help me out here> please. > > Please pray that the MRI doesn't show a worsening in the> disease.> > Thanks,> Karin>

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Howdy everyone! First post to this site. Been on Copaxone since May

1997 and LDN for just over two weeks.

Are " leg contractions " the same as restless leg? I'm on Requip for

the RLS and it works very well.

I've seen vast improvements in overall energy and my hands are no

longer numb as well.

My advice? Hang in there, " play " with the different supplements/drugs

until you find a balance, and keep laughing!

Martha Skye

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>

> Drastic is the key

word, it's a huge change.

Personally, I could never

> do it, I guess I'm

either too set in my ways,

or else I'm not 'bad off'

> enough to resort to such

drastic measures.

Interesting you say that

the

> parents of autistic kids

have those issues, does Dr

McCandless know the

> ratio of autistic kids

with , for lack of a

better word, diseased

> parents, and do you or

her know exactly what

benefits these parents are

> getting?

> > Dave,

> >

=======

Yesterday Dr. McC sent me

the results of her trial,

not sure she's ready for

that report to be released

to the public just yet so

I'll give you some general

stuff from that report.

She noted that parents

with autistic children are

under great stress and

with that high stress it

many times results in a

breakdown of the immune

system causing

autoimmunity. Her results

did show that the autistic

children on both the LDN

and very restricted diet

had significantly more

improvements than the

adult group where only a

few were on the restricted

diet and there were many

more adults with various

autoimmune diseases in the

study than there were

autistic kids. The adults

did well but she feels

could do better if radical

changes were made to diet.

McCandless feels that for

the adults that if diet

were to be changed to the

gluten/wheat free, soy

free, dairy free, sugar

free diet that there would

be better results from LDN

for the adults. The

adults did well but she

feels they could do better

with diet change.

Maybe she'll put out the

results on her site soon.

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For spastic muscles...this is very expensive but it works for me when I get dosage as high as 12,000mg a day. Check into Bill Rich's MSM, I feel his is the best quality MSM available. Do a google search. I used the torpedo tablets, you may want the powder. I started for 3 days with 1000mg of Rich's MSM and for better absorption take with the MSM 1000mg of Ester C, make sure the

Great advice , and I am also a big fan of MSM, but it should ALWAYS be taken with the trace mineral molybdenum to convert it to a beneficial sulfate form in the body. Otherwise it can be quite toxic. I get my MSM powder at the feed store locally for about 6.50 per lb container and it is as pure as any of the other brands. 99%. The molybdenum can be purchased in pill form from Solgar or I found a liquid form from Vitacost.com which I find more convenient. The ratio is 10mcg. molybdenum to 500mg MSM.

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