Re: When should I start to worry? Please help

March 2, 2010

Dear Mia,

I am not a doctor, but I do have MS and have experienced some of your symptoms.

Here are some random thoughts. A fever will lay me out totally, as will any rise

in my core temperature whether from the inside (fever) or outside (even mild

overheating). It causes tingling in all extremities. For me this is normal. I

can wash my hands in hot water and lose sensation in the fingers, just that

quickly.

I did not realize the heat connection until I was told to keep a journal in my

early MS support group. There are also long term effects of heat, of fatigue and

depression for a couple of days after even a mild overheating. If you are not

aware of this and have not really identified it, then the fear that these

perfectly normal symptoms could cause the rapid heart beat and other adrenalin

related problems.

I know that when I first started LDN, I was hyper aware of my body. I examined

every little twinge, every muscle tiredness, every mental shift.

In short, I am not surprised that a fever, combined with stress, along with

minute self examination and now terrible doubts about your future health could

trigger exactly such a reaction. I have done it to myself in the past as well.

If there is something that you think you should be doing different, then hop on

it. If you are doing the best that you know how, then take a deep breath and

enjoy the day that you have. :-) Please hang in there.

I hope this helps a bit,

Francie

>

> Hi everybody,

>

> I've been on LDN since August of last year for MS. I've been doing great on

it so far, until very recently. Last night however I had a pretty scary episode

(for me anyways). I woke up out of a dead sleep and my heart was racing (can't

remember if I was having a dream or not) and I noticed immediately that my legs

were killing me, and my entire body was warm and tingly from my face, back,

legs, arms, toes, fingers, everywhere. I was laying on my stomach at the time

and after the inital panic subsided I decided to lay on my side and see what

happens. After a few minutes the pain in my legs went away but I was still warm

and tingly all over for a while. After I started to calm down some more and my

heart was no longer racing the rest of my body started to go back to normal as

well. But when I was laying there worrying about what just happened and my

heart rate would go up again the warm and tinglys would return. It would

continue to come and go for maybe 30 min until I fell back to sleep. I remember

this happening only one other time in the middle of the night pre LDN. So

naturally this led me to believe the worst. Also, today now that I am awake my

arms are still somewhat tingly as well as my feet. Although I have to say that

I am still pretty shaken from last night. Anyways, I posted earlier this week

about some other things that have been going on for me where I explained about

the recent stress I've been under lately as well as a virus I was fighting that

has pretty much since then gone away. I also missed a day of taking my meds one

day last week. Only other thing that I can think of that I've been taking that

is different is those probiotic (Activia) yogurts as well as some pills that are

supposed to be all natural. Here are the ingredients: witch hazel leaf, horse

chesnut leaf, ginger root, blond psyllium,, hesperidin, and diosim. Could any

of this be responsible? Could the fact the my heart was racing triggered a

reaction like that? I am definitely starting to worry that it is no longer

working or is it just maybe a " glich " or one of those things that can happen

when I have all this other stuff going on? When should I start to worry and go

back and see my neuro to find out if I am progressing? One other thing, a few

weeks back, I read Sammy Jo's story about how LDN stopped working for her after

four years and to be honest it scared me to find that out. Seems like ever

since then I've been going slowly downhill. I worried so much that the same was

bound to happen to me. Could it be psychological? Until I read that, I seemed

to be doing great. Sorry for taking up all this time explaining, but any

advice, input, similar stories, or suggestions would be greatly appreciated.

Thanks in advance and God bless!

>

> Mia

March 2, 2010

the Activia yoghyrt might be part of it. the low-fat or fat-free versions

contain aspartame among the sweeteners, which i'd be very suspicious of in

connection with any maybe contributing to neuro problems.

i use plain whole milk or low-fat yoghurt, organic, no sweeteners or

anything, and it has all the active cultures anyone needs from yoghurt.

from what i heard on the radio from a yoghurt expert (or at least the author

of a book on it who sounds like one) to get the desired cultures live in

good shape just get plain, no flavors or sweeteners... add those yourself at

time of eating. sugar or sweeteners and the cultures don't get along.

> [low dose naltrexone] When should I start to worry? Please help

>

> Hi everybody,

>

> I've been on LDN since August of last year for MS. I've been

> doing great on it so far, until very recently. Last night

> however I had a pretty scary episode (for me anyways). I

> woke up out of a dead sleep and my heart was racing (can't

> remember if I was having a dream or not) and I noticed

> immediately that my legs were killing me, and my entire body

> was warm and tingly from my face, back, legs, arms, toes,

> fingers, everywhere. I was laying on my stomach at the time

> and after the inital panic subsided I decided to lay on my

> side and see what happens. After a few minutes the pain in

> my legs went away but I was still warm and tingly all over

> for a while. After I started to calm down some more and my

> heart was no longer racing the rest of my body started to go

> back to normal as well. But when I was laying there worrying

> about what just happened and my heart rate would go up again

> the warm and tinglys would return. It would continue to come

> and go for maybe 30 min until I fell back to sleep. I

> remember this happening only one other time in the middle of

> the night pre LDN. So naturally this led me to believe the

> worst. Also, today now that I am awake my arms are still

> somewhat tingly as well as my feet. Although I have to say

> that I am still pretty shaken from last night. Anyways, I

> posted earlier this week about some other things that have

> been going on for me where I explained about the recent

> stress I've been under lately as well as a virus I was

> fighting that has pretty much since then gone away. I also

> missed a day of taking my meds one day last week. Only other

> thing that I can think of that I've been taking that is

> different is those probiotic (Activia) yogurts as well as

> some pills that are supposed to be all natural. Here are the

> ingredients: witch hazel leaf, horse chesnut leaf, ginger

> root, blond psyllium,, hesperidin, and diosim. Could any of

> this be responsible? Could the fact the my heart was racing

> triggered a reaction like that? I am definitely starting to

> worry that it is no longer working or is it just maybe a

> " glich " or one of those things that can happen when I have

> all this other stuff going on? When should I start to worry

> and go back and see my neuro to find out if I am progressing?

> One other thing, a few weeks back, I read Sammy Jo's story

> about how LDN stopped working for her after four years and to

> be honest it scared me to find that out. Seems like ever

> since then I've been going slowly downhill. I worried so

> much that the same was bound to happen to me. Could it be

> psychological? Until I read that, I seemed to be doing

> great. Sorry for taking up all this time explaining, but any

> advice, input, similar stories, or suggestions would be

> greatly appreciated. Thanks in advance and God bless!

>

> Mia

March 3, 2010

From Dr. McCandless:

As I have said many times before on this board, anytime someone has a negative

reaction to LDN the first question I would ask is, " What is the diet like? " If I

had a disease such as ALS or MS, I would be more than willing to see if my

dietary exogenous opioids could be causing the negative reaction to a drug that

is helping most of these people get off all their other drugs without

progression of their disease. The reason this is a worthwhile trial is that this

intolerance is affecting their general health and immunity in a negative way.

Unfortunately, sometimes it takes up to 6 months to get gluten out of the

system, so it is not so easy to test

Wonderful info Dr McCandless wrote/please read

http://ldn.proboards3.com/index.cgi?board=forum & action=display & thread=448