Re: What's a fair trial of LDN

[Guest guest]

I read somewhere that the lesions aren't the markers of disease severity. Some

people have few lesions but are quite disabled, some have many and are " merely

walking wounded " , to which group I happily belong.

What other therapies give a better guarantee for the disease not to progress?

As far as I read about other MS therapies, there is absolutely no guarantee that

they will stop progression but the likelyhood of side-effects is huge. Give me

LDN anytime, no lasting side-effects there.

Silvia (PPMS, on LDN for over 2 years and loving it)

>

> Hey Folks,

> My girlfriend who was diagnosed RRMS in March 2010 started LDN four

months ago, and her MRI from last week showed new lesions that are enhancing.

How long should one use LDN if the disease is still progressing before trying

other therapies?

>

> Thanks,

> Andy

>

[Guest guest]

Stay on LDN... but has she changed her diet:

-Paleo -

-Best Bet - http://www.direct-ms.org/bestbet.html

===

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[Guest guest]

A good 9 months to one year. Did she have an MRI 4 months ago before starting

LDN? Is she taking 4.5mg after 9pm?

, LDN user over 7 yrs for progressive MS

=========================

>

> Hey Folks,

> My girlfriend who was diagnosed RRMS in March 2010 started LDN four

months ago, and her MRI from last week showed new lesions that are enhancing.

How long should one use LDN if the disease is still progressing before trying

other therapies?

>

> Thanks,

> Andy

>

[Guest guest]

I would like to know who comes up with staying on LDN 6-9-12 months before giving up. I would like some hard cold facts on the proof of this if there is any. I personally have a hard time believing that it would take that long and I am contemplating refilling it one more time before I call it quits. My mind says to me , that if you are taking a drug, unless its a placebo, that your body knows. If I am on the 4.5 dose since day one 7 wks ago I have not noticed anything, and then you have ALL these people that have barely taken the minimum dose and have had major side effects,,,,,,,,,,,,,,,I just dont quite get it.

My mind also tells me that I have been in chronic pain for 30 years that it is just not going to go away overnight, and then I am also told by some intelligent thyroid people that once my thyroid condition gets better then all this will get better too. So I am inclined to believe that if fibro is a result of hypo then when my hypo is better the fibro will be better..................

Just saying......................

[Guest guest]

OK – many years ago I was dx’d with fibro and the pain was awful. After finally getting my candida under control the pain was 70% better. What a relief. Then found out I had MS, became depressed and gave up on what I had done for my candida. Hence, more pain. Started LDN, no great things happened that I read could happen. Stayed on it for a few more months and started working on my candida problem again. Still working on the candida problem 10 months later and went gluten free. MS is not better, walking may be a bit worse but......., nerve pain is not as frequent, leg spasms are much better, depression is 80% better. I have been a bit depressed this last week but I am chocking that up to the virus I got from my husband. I usually do not get sick anymore and if I do it usually is not bad as the others get. This is the 1st cold or sickness in about a year and a half. This to me is a big plus for taking LDN. I am going keep it up. I think I will keep working on my candida. It so worth it.

Theresa

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[Guest guest]

>

        It would be very helpful if someone knew whether LDN sometimes takes

awhile to start working, and how long one should take it before resorting to

more potentially side-effect laden and possibly still in-effective treatments

for the condition (avonex). Any guidance would be greatly appreciated.

> Thanks in advance,Andy        

>

Andy

I've been on LDN for close to 8 months, and am still waiting for my miracle.

Just went through a relapse that I thought wouldn't happen while on LDN. It was

milder than previous ones and that could be due to the LDN. Also, there wasn't

any increase in disability with the relapse, just pain and feeling bad.

I've done alternative and LDN to treat my MS with a local GP. Haven't even been

to a neurologist since my diagnosis, 11-09. There's no point if you're not

willing to try the standard treatments. (I'm glad I didn't know about steroids

when I had my worst relapses.)

What comes to mind regarding your request, is the many factors that can effect

how well the LDN works.

With MS, you have to realize you're starting from a place of a compromised

immune system, or you wouldn't have MS.

One of the functions of LDN is to reactivate cell mediated immunity, or the

shift from T2 to T1. With T2 dominance, viruses and candida flare up, and until

that shift is accomplished, one won't feel better. Supplements to help make

that change are L-Glutathione and NAC, both of which I'm now taking.

Then there is the Methylation Cycle:

http://www.ceu-usa.com/courses/WC001/test_drive/methylation_cycle.htm

Until that's repaired, one will not get rid of the MS fatigue. There are also

supplements that help as outlined here:

http://www.drmyhill.co.uk/wiki/CFS_-_The_Methylation_Cycle

Some say LDN might not work for you if your receptors aren't working properly.

DLPA is supposed to make your endorphins last longer, but if your receptors are

fried from previous drug or alcohol use, it could delay a favorable response.

There are other issues like hypothyroidism and adrenal fatigue that could make

one not feel well despite the endorphin boost provided from the LDN.

Health is a big picture and some might have a longer way to go than others to

regain it. These are a few reasons it could take longer to see a benefit from

the LDN.

It's not even known for sure that MS is an autoimmune disease:

http://www.thisisms.com/article63.html

LDN is the only treatment that builds up your immune system rather than cripples

it. Why anyone would submit to a " treatment " that suppresses your immune system

is beyond me.

Some seem to get a lot better immediately. I wasn't one of those, although I

can say I haven't gotten any worse either.

I feel I'm using the best treatment for my MS, taking my 3 mg. LDN. Couldn't do

4.5 because spasms were too bad despite taking lots of calcium and magnesium. 3

mg. is considered a therapeutic dose.

I don't think LDN was ever meant to be an overnight fix. The changes to your

immune system take time. Perhaps the biggest miracle is just no progression.

I don't know what to say regarding active lesions, but I would give it more

time, and work on any obstacles, as mentioned above, when they come up. If

there isn't an accompanying increase in disability, then progression has been

stopped, despite what the MRI says.

That's what I'm doing and I definitely think I'm doing something to stop this

disease.

K.C.

[Guest guest]

You are complaining of chronic pain/fibro, have you ever been to see a lyme

literate doctor? Lyme mimicks many autoimmune diseases. I have a very

extensive lyme thread on my LDN forum that I could post if you are interested.

The standard CDC lyme tests miss chronic lyme 85% to 90% of the time. I saw

vision improvement 6 months down the road on LDN and my ophthalmologist sent a

letter to my neuro stating so. Dr. Bihari always recommended giving LDN a good

9 months trial.

, LDN user over 7 yrs for chronic progressive MS

========================

>

> I would like to know who comes up with staying on LDN 6-9-12 months before

> giving up. I would like some hard cold facts on the proof of this if there

> is any. I personally have a hard time believing that it would take that

> long and I am contemplating refilling it one more time before I call it

> quits. My mind says to me , that if you are taking a drug, unless its a

placebo,

> that your body knows. If I am on the 4.5 dose since day one 7 wks ago I

> have not noticed anything, and then you have ALL these people that have

> barely taken the minimum dose and have had major side effects,,,,,,,,,,,,,,,I

> just dont quite get it.

>

> My mind also tells me that I have been in chronic pain for 30 years that it

> is just not going to go away overnight, and then I am also told by some

> intelligent thyroid people that once my thyroid condition gets better then

> all this will get better too. So I am inclined to believe that if fibro is a

> result of hypo then when my hypo is better the fibro will be

> better..................

>

> Just saying......................

>

[Guest guest]

Hi whatever name (sorry, you didn't sign, so I can't address you nicely)

I met somebody a little while ago who said, that he didn't know if the LDN was

really doing him much good. I asked, was he worse than before he started, which

was about a year ago. He denied that. So I told him: " Well, if you aren't worse

it's working, as staying the same with a progressive illness is a winner. " And

if staying the same is all some of us get that alone should be the reason why we

should make people aware of this before they deteriorate.

There are people who felt improvements only after months, but how many of us

don't even really notice and acknowledge improvements? People take good things

for granted but complain about the smallest niggle. Somebody told me that she

only just realised that she hadn't had any leg spasms in months, pretty much the

length of time she had been taking LDN. But as she doubts LDN she never thought

that it just might be the reason why the spasms stopped. Somebody else has just

stopped taking LDN because it " obviously didn't do her much good " . But only

upon questioning would she admit that she had started loads of other things at

the same time as LDN, blames the LDN though, because her doctor blames it too.

I am always amazed when I suddenly realise that there are things I can do, which

I couldn't do anymore a few years ago. Maybe the reason I can do them is

increased physio and exercises, but the fact that I am no longer too tired to do

these is due to LDN and the increased energy it gives me.

Silvia (PPMS, LDN for nearly 25 months and my best improvement was after 8

months. And thank goodness for keeping a diary at the beginning, it convinced

me of my improvements)

>

> I would like to know who comes up with staying on LDN 6-9-12 months before

> giving up. I would like some hard cold facts on the proof of this if there

> is any. I personally have a hard time believing that it would take that

> long and I am contemplating refilling it one more time before I call it

> quits. My mind says to me , that if you are taking a drug, unless its a

placebo,

> that your body knows. If I am on the 4.5 dose since day one 7 wks ago I

> have not noticed anything, and then you have ALL these people that have

> barely taken the minimum dose and have had major side effects,,,,,,,,,,,,,,,I

> just dont quite get it.

>

> My mind also tells me that I have been in chronic pain for 30 years that it

> is just not going to go away overnight, and then I am also told by some

> intelligent thyroid people that once my thyroid condition gets better then

> all this will get better too. So I am inclined to believe that if fibro is a

> result of hypo then when my hypo is better the fibro will be

> better..................

>

> Just saying......................

>

[Guest guest]

K.C. good message to hear, one of real hope. Thank you, just what I needed this morning. When I get up in the morning and for hours and then all night, walking is extremely hard for me, my legs are like dead tree stumps, why is this happening since I was diagnosed with hypo, I swore I had MS, but when they gave me an MRI of my pituitary I asked them to check for MS, they said negative but I never did see those results, I should get them today. Also today I am going to call Skips Pharmacy , where I get my LDN and I am going to get is input on this LDN treatment, after all he is extremely educated with it. I will keep you posted.

I hope we all have a good day as possible today......................MAD Myra in NH

[Guest guest]

To me, a fair trail of LDN is whether she feels good on it. Period. There is not

a time limit, or a magic answer.

I started LDN because I lost my insurance and could no longer buy the Copaxone

at $2600 per month. It obviously was NOT working as my symptoms were

progressing. I got an MRI every 5 years and the only thing getting better was

the technology and focus of the machine (have you looked at early MRI's :-)

Anyway, I was fortunate enough to find LDN and found relief of my symptoms. Do I

have fluorescing lesions? Who knows. Remember, I have no insurance. What I DON'T

have is MS symptoms like I used to. What do I care if I have MS as long as I

don't suffer the symptoms? And what do I care what the MRI machine thinks. I am

the one who has to live my life.

So just what magic drugs are they offering to replace the LDN that has stopped

her symptoms? There aren't any.

For me? I would not take the steroid treatment. Are you kidding? Just to cure

the MRI film? Just to make sure that she does not get a more serious lesion?

This is insanity, and I am glad that your gut is telling you that the advice is

not sound. Pred leads to major organ deterioration and osteo over time. This is

not something harmless that you take as a preventative. Jeez.

Today is not my day to couch my words in soft tones. The doctor better have a

very good reason to give me destructive drugs, or I would get a new doctor.

Actually, maybe no doctor would be better than a bad one.

I will close by quoting an exchange about steroid use from Dr. Lawrence who has

MS and uses LDN to control it. You asked for alternatives to the nasty drugs

that the doctor suggested, and this might be of help.

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

Dr. Lawrence's thoughts below...

Another frustration is the repeated question: " What do I do if I need steroids? "

My response to this is simple! You DO NOT need steroids!

Because exacerbations are due to oxidative stress, usually associated with an

infective, traumatic, or emotional event, the more suitable treatment is

antioxidants - at high dosage! Apart from the basic antioxidants that we all

know (zinc, copper, selenium, vit C, E, and beta carotene) there is a vast and

increasing list of other antioxidants that may also be used: flavonoid OPCs;

alpha lipoic acid, acety N-carnitine; phosphatidyl serine; etc, etc. Used at

high dosage these are as capable as steroids in reducing the intensity and

development of relapses or exacerbations without the downside and adverse

effects of steroids.

The below is by Dr. Lawrence's assistant giving further explanation.

Action to Take in MS, in the Event of a Relapse or Exacerbation

While taking LDN, relapses of MS are much less likely to occur, but may be

associated with any situation of physical or emotional stress. This should more

precisely be referred to as a reactive exacerbation as, in this situation, the

increase in symptoms is not directly related to a spontaneous increase in MS

activity.

Such stress-associated exacerbations are invariably due to some kind of

exceptional circumstance that imposes an additional demand on the immune system,

thus reducing the ability of the immune system to deal adequately with the

disease itself. The most likely event prompting this response is either

infection, injury or trauma of some kind.

In this circumstance, when MS symptoms are seen to increase significantly, many

MS patients will be tempted to accept the routine advice of conventional

neurologists, which is to submit to a course of steroid drugs. This choice is

both inappropriate and ill-advised.

Steroid use in any auto-immune disease, such as MS, will have a strong adverse

effect by suppressing both the immune system and adrenal function. Thus, when

these drugs are stopped, these reactions will result in an increase in both the

risk of further relapse, and the rate of disease progression. In addition, when

steroids are used, it will become necessary to stop taking the LDN, further

disrupting the level of disease stability.

Thus, if a relapse should occur, for whatever reason, the most important action

is to continue the LDN without a break.

In addition, the nutrient therapy, which is also effective in protecting and

promoting the function of the immune system, should be continued at optimum

levels.

Because relapses of MS are related to what is referred to as oxidative stress,

the most effective therapy will be the antioxidants.

These nutrients will therefore include, most importantly, zinc and copper, at

the dose required by the zinc taste test; and all the routine antioxidants

(selenium; vitamin C; vitamin E, and beta carotene), at optimum dosage. This

will mean doubling the dose beyond that considered appropriate for routine use.

Thus, doubling the dose will provide vitamin C, 2000 mg; vitamin E, 800

international units; selenium, 400 mcg; beta carotene, 30 mg.

Vitamin D and EPA fish oil will also be required within this overall therapeutic

context.

The anthocyanidins too are very effective antioxidants, permitting the recycling

and re-use of both vitamin C and vitamin E within the body.

Anthocyanidins, otherwise known as oligomeric pro-anthocyanidins, or OPCs, are

plant derived flavonoids that have a powerful antioxidant activity.

The recommended dose during a normal state of activity of the MS is between 250

and 500 mg/ day. During a significant exacerbation this dose may be increased

beyond that to as much as 500 to 1000 mg/ day.

Examples of anthocyanidins include pine bark extract, often sold as pycnogenol.

As a patented product, for the modest dose provided, usually 30mg, this is

relatively very expensive. Conversely, grapeseed extract is one of the cheapest

flavonoids available. Others include green tea extract, and extracts from many

dark-coloured seeds, such as bilberries, blueberries or blackberries.

This overall method will be far more effective at controlling any increase in

disease activity with no threat of further relapse, as occurs with an intense

phase of treatment with steroids.

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

>

> Hey folks, Thanks for the replies. I am still wondering whether there is

an agreed upon length of time to use LDN before trying other therapies, if the

MS is still progressing. My girlfriend has been on LDN 4 months, and in that

time there have been at least 4 new lesions which have formed on her brain,

which I understand indicates that the disease is still progressing, despite her

current lack of symptoms. Of all three MRI's she's has since she was diagnosed,

every one has shown enhancing lesions. She also takes copaxone (for 9 months

now) and has completely changed her diet and lifestyle and takes custom chinese

herbs as well as some nutritional supplements. Her MD is advising her to

take a 3 day steroid treatment and then start Avonex, which we don't really want

to do. The other alternative the MD said was to take the three day steroid

treatment, then take a 1 day treatment each month while continuuing the copaxone

and LDN

> to give them a chance to start working. She is leaning towards doing this,

because she wants LDN to work, but there is no clear-cut answer here as to what

is the best course of action that we have found. The rationale for the steroids

is to get the inflammation down and buy some time to avoid the development of

new and possibly more symptomatic lesions. It would be very helpful if

someone knew whether LDN sometimes takes awhile to start working, and how long

one should take it before resorting to more potentially side-effect laden and

possibly still in-effective treatments for the condition (avonex). Any guidance

would be greatly appreciated.

> Thanks in advance,Andy

>