Re: LDN and ME/ Only lactos fillers work?????

[Guest guest]

>

Hello to all,

I have been on the outside looking in, actually reading up. A

little introduction - I am a PPMScleroser since 2001 and having been

going steadily downhill most rapidly within the last year. I only

began LDN 3.0 mg 30 days ago. During the first weeks I did feel a

lot better, my legs were stiffer but I certainly was not too

disturbed with getting to sleep as was to be expected, just on the

first three days but after I was able to sleep right through the

night and THE BEST THING no waking up at 2am and 4am to get to the

bathroom! That is such a good change. I'm " apartment ridden " and

use a walking stick to help me with my balance but during those

first weeks I had actually forgotten about that stick. It stayed in

the same place without being touched. But within the last four days

I have noticed a complete change. It began a week ago with getting

out of bed in the morning. I've always been an early riser

beginning my day with my yoga exercises but for some reason I just

need to sleep and I force myself out of bed at 9.30 or 10 am. It is

not that I'm tired. I'm not but I just want to sleep! Has anyone

had this reaction? I remember someone writing in about that as

well. But that is not a problem. I just have to train myself

otherwise. What has happened that is strange and which began four

days ago is that I am a lot weaker, my legs are so stiff and my

thighs feel like logs (luckily for me they do not also ressemble

them!). My balance is worse and I really have to concentrate on what

I'm doing so as not to loose my balance and fall. My arms are

weaker and putting something to my mouth is even difficult but the

strangest is my being very emotional. I keep bursting into tears

and going through the " Why me MS Syndrome " . I have not been like

this in a very long while. In fact I have been quite positive and

happy and focused. I even noticed that LDN does make you light

hearted. I'm not giving up on LDN. I'm think I need to play around

and find which is the right dose, the right filler for me. Has

anyone else out there has these changes and would like to share them?

Now I see that Kathy says " that dr bihari only uses lactose filler

with the ldn he said anything else the ldn will not work. " Is this

so? I'm with Dr. and am using a calcium carbonate filler

which by the way I emptied last night into a spoon with honey as

someone suggested that it may be too tightly packed to be rapid

releasing. I'm interested to know if others with Dr. Bihari are

also using lactose. Well those who are not intolerant.

Well I've talked enough and it is so good to be able to share what

I'm going through with all of you. Thank you for listening

or " reading " I should say.

Kind regards,

Joanne

[Guest guest]

> >

> >

> Now I see that Kathy says " that dr bihari only uses lactose

filler

> with the ldn he said anything else the ldn will not work. " Is

this

> so? I'm with Dr. and am using a calcium carbonate filler

> which by the way I emptied last night into a spoon with honey as

> someone suggested that it may be too tightly packed to be rapid

> releasing. I'm interested to know if others with Dr. Bihari are

> also using lactose. Well those who are not intolerant.

>

Hi, Joanne. We use Dr. also, but we do not use the pharmacy

that he recommends. We use Skip's, mainly because Skip helped me so

much in my research of LDN. Alot of people have had problems with

the calcium carbonate filler. Get rid of it. Ask for your refills

with another filler and if they cannot do it, use another pharmacy.

People seem to be having really good results with avicel, lactoce

and acidophillus fillers, but many are having poor to bad results

with the calcium carbonate. I would get this taken care of as soon

as possible. My son has avicel as his filler, and has had wonderful

results! Good luck!

Kim

[Guest guest]

Thanks for your thoughts Marcie. I've decided to try with a lactose

filler.

Kind regards,

Joanne

> Joanne,

>

> Maybe you are just going to have to relive those symptoms until

they pass. I

> have heard others mention this. It didn't happen that way for me,

but I

> don't think it is entirely uncommon.

>

> I am using Avicel filler now. I used calcium carbonate, and to my

knowledge,

> didn't have any trouble.

>

> Marcie

>

[Guest guest]

Thanks Kim for your reply. I shall be taking care of that tomorrow.

Kind regards

Joanne

>

> Hi, Joanne. We use Dr. also, but we do not use the pharmacy

> that he recommends. We use Skip's, mainly because Skip helped me

so

> much in my research of LDN. Alot of people have had problems with

> the calcium carbonate filler. Get rid of it. Ask for your

refills

> with another filler and if they cannot do it, use another

pharmacy.

> People seem to be having really good results with avicel, lactoce

> and acidophillus fillers, but many are having poor to bad results

> with the calcium carbonate. I would get this taken care of as

soon

> as possible. My son has avicel as his filler, and has had

wonderful

> results! Good luck!

>

> Kim

[Guest guest]

>

>Hi Kim,

I'm happy that your son is doing well on LDN and he does not have to

go through my experiences with Interferon and chemotherapy. If I

had just changed my direction of investigation at the onset. But I

am here now! I spoke with my doctor and he thinks that I may be

reacting to LDN. He did ask if I was sensitive in general to

medications but I've never been. So I'm awaiting my next batch and

shall begin with a low dose and work my way up if all goes well.

I've also changed the refill and pharmacy. Thanks for your advice.

Kind regards,

Joanne ---

> >>

> Hi, Joanne. We use Dr. also, but we do not use the pharmacy

> that he recommends. We use Skip's, mainly because Skip helped me

so

> much in my research of LDN. Alot of people have had problems with

> the calcium carbonate filler. Get rid of it. Ask for your

refills

> with another filler and if they cannot do it, use another

pharmacy.

> People seem to be having really good results with avicel, lactoce

> and acidophillus fillers, but many are having poor to bad results

> with the calcium carbonate. I would get this taken care of as

soon

> as possible. My son has avicel as his filler, and has had

wonderful

> results! Good luck!

>

> Kim