RE: New to LDN and seeking others experiences

[Guest guest]

Hi Wish I could be some help but I've just recently started LDN myself.I would like to talk to you about the joint pain and chemical sensitivities. Would you mind mailing me privately?-- Warmest Regards,

Robin LittleI have a history of joint pain when I eat things or take many drugs or

am exposed to chemicals that I am allergic to. I am " chemically

sensitive " .

karen

[Guest guest]

you might have candida and things can become worse at the beginning if you do

not clean it.

>

> I have MS like symptoms, but have been diagnoses with long term chronic lyme

after having been diagnosed with FMS more than 10 years ago, having IC, and

being told I had MS. I manage pretty well, and very alternative and eat a

pretty healthy diet - absolutely no additives, dyes, processed foods, high

fructose corn syrup, artificial sweetners, dairy... I do eat natural sugars and

fruits although I know I should not! I have had significant improvements over

the last two years with some antibiotics (oral) and other treatments. I have a

far infrared sauna that I have been using about twice a week ( 30 minutes at

level 5) for the past month or so. My ID doctor perscribed LDN at my request to

try to see if it could help boost my immune system (my viatamin D levels have

continued to drop, my CD57 is really low, and I have very high fibrinogen

levels, thyroid issues, extreme cold sensistivity, and allergic reactions to any

of the above mentioned foods, and extreme insomnia which I now take Lunesta for)

- whew - enough of that!

>

> So anyway I originally got 3 mg and tried that a couple of nights and knew I

could not tolerate it, so I got 1.5 mg and have taken that for 3 nights and it

is causing some big sleep issues even with Lunesta. In the morning I feel

" energized " even though I also feel tired. If I sit down anytime after noon

time I immediately want to fall asleep and I feel somewhat " drained " and a

little disconnected. I did not take it last night because I just needed to

sleep! Today I have developed SEVERE joint tenderness in my left hip and right

shoulder that seems to be progressively getting worse with the hour. It is that

time of the month and I started today. I am prone to more " problems " at this

time. I have a history of joint pain when I eat things or take many drugs or am

exposed to chemicals that I am allergic to. I am " chemically sensitive " .

>

> I am wondering - could LDN do this? Could it be my immune system " reving up

and reacting " ? My ID doctor had never heard of LDN so he is not going to be

much help!

>

> Can anyone offer any opinions on what might be going on? I have not eaten

anything out of the ordinary or been exposed to anything that I know of! My

husband thinks I shoudl just " push " through it for a couple of weeks and see if

the " symptoms go away " , but after this extreme joint pain I am worried....

>

> Thanks for any input!

>

> karen

>

[Guest guest]

HI

I understand your anxiety about the joint

pain. I started LDN 3 weeks ago at 3 then 4.5 and pain /stiffness got

unbearable and scary. I am now working through on 1.5 =1 week in and hoping the

excess pain and sleep disturbance will abate. The only difference I discern in

last few days is a tiny tiny almost indiscernible sense of hope which of

course may be placebo effect or indeed may be my endorphins finally picking up.

Good luck

Nuala

p.s. Look though the archives and see the

many support messages that came to me offering dietary supplement info and

support.

From:

low dose naltrexone

[mailto:low dose naltrexone ]

On Behalf Of tplb52

Sent: 09 April 2009 00:52

low dose naltrexone

Subject: [low dose naltrexone] New

to LDN and seeking others experiences

I have MS like symptoms, but have been diagnoses with

long term chronic lyme after having been diagnosed with FMS more than 10 years

ago, having IC, and being told I had MS. I manage pretty well, and very

alternative and eat a pretty healthy diet - absolutely no additives, dyes,

processed foods, high fructose corn syrup, artificial sweetners, dairy... I do

eat natural sugars and fruits although I know I should not! I have had

significant improvements over the last two years with some antibiotics (oral)

and other treatments. I have a far infrared sauna that I have been using about

twice a week ( 30 minutes at level 5) for the past month or so. My ID doctor

perscribed LDN at my request to try to see if it could help boost my immune

system (my viatamin D levels have continued to drop, my CD57 is really low, and

I have very high fibrinogen levels, thyroid issues, extreme cold sensistivity,

and allergic reactions to any of the above mentioned foods, and extreme

insomnia which I now take Lunesta for) - whew - enough of that!

So anyway I originally got 3 mg and tried that a couple of nights and knew I

could not tolerate it, so I got 1.5 mg and have taken that for 3 nights and it

is causing some big sleep issues even with Lunesta. In the morning I feel

" energized " even though I also feel tired. If I sit down anytime

after noon time I immediately want to fall asleep and I feel somewhat

" drained " and a little disconnected. I did not take it last night

because I just needed to sleep! Today I have developed SEVERE joint tenderness

in my left hip and right shoulder that seems to be progressively getting worse

with the hour. It is that time of the month and I started today. I am prone to

more " problems " at this time. I have a history of joint pain when I

eat things or take many drugs or am exposed to chemicals that I am allergic to.

I am " chemically sensitive " .

I am wondering - could LDN do this? Could it be my immune system " reving

up and reacting " ? My ID doctor had never heard of LDN so he is not going

to be much help!

Can anyone offer any opinions on what might be going on? I have not eaten

anything out of the ordinary or been exposed to anything that I know of! My

husband thinks I shoudl just " push " through it for a couple of weeks

and see if the " symptoms go away " , but after this extreme joint pain

I am worried....

Thanks for any input!

karen

[Guest guest]

Hi Nuala

Good luck with L.D.N.I want to let you know I started taking it 1 year seven months ago.During that time I've had three relapses.I was initially told to come off L.D.N when taking steriods so I did each time.Evethough I did not have symtem improvement,I do not have progression,and isnt that what L.D.N. does and what wer'e all hoping for.I was dx with M.S five years ago,took Anvonex for four months,then came off it as I was allergic to it and nothin till I heard of L.D.N. I'm only sorry that I didnt hear about it five years ago.

RE: [low dose naltrexone] New to LDN and seeking others experiences

HI

I understand your anxiety about the joint pain. I started LDN 3 weeks ago at 3 then 4.5 and pain /stiffness got unbearable and scary. I am now working through on 1.5 =1 week in and hoping the excess pain and sleep disturbance will abate. The only difference I discern in last few days is a tiny tiny almost indiscernible sense of hope which of course may be placebo effect or indeed may be my endorphins finally picking up.

Good luck

Nuala

p.s. Look though the archives and see the many support messages that came to me offering dietary supplement info and support.

From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of tplb52Sent: 09 April 2009 00:52low dose naltrexone Subject: [low dose naltrexone] New to LDN and seeking others experiences

I have MS like symptoms, but have been diagnoses with long term chronic lyme after having been diagnosed with FMS more than 10 years ago, having IC, and being told I had MS. I manage pretty well, and very alternative and eat a pretty healthy diet - absolutely no additives, dyes, processed foods, high fructose corn syrup, artificial sweetners, dairy... I do eat natural sugars and fruits although I know I should not! I have had significant improvements over the last two years with some antibiotics (oral) and other treatments. I have a far infrared sauna that I have been using about twice a week ( 30 minutes at level 5) for the past month or so. My ID doctor perscribed LDN at my request to try to see if it could help boost my immune system (my viatamin D levels have continued to drop, my CD57 is really low, and I have very high fibrinogen levels, thyroid issues, extreme cold sensistivity, and allergic reactions to any of the above mentioned foods, and extreme insomnia which I now take Lunesta for) - whew - enough of that! So anyway I originally got 3 mg and tried that a couple of nights and knew I could not tolerate it, so I got 1.5 mg and have taken that for 3 nights and it is causing some big sleep issues even with Lunesta. In the morning I feel "energized" even though I also feel tired. If I sit down anytime after noon time I immediately want to fall asleep and I feel somewhat "drained" and a little disconnected. I did not take it last night because I just needed to sleep! Today I have developed SEVERE joint tenderness in my left hip and right shoulder that seems to be progressively getting worse with the hour. It is that time of the month and I started today. I am prone to more "problems" at this time. I have a history of joint pain when I eat things or take many drugs or am exposed to chemicals that I am allergic to. I am "chemically sensitive". I am wondering - could LDN do this? Could it be my immune system "reving up and reacting"? My ID doctor had never heard of LDN so he is not going to be much help!Can anyone offer any opinions on what might be going on? I have not eaten anything out of the ordinary or been exposed to anything that I know of! My husband thinks I shoudl just "push" through it for a couple of weeks and see if the "symptoms go away", but after this extreme joint pain I am worried....Thanks for any input!karen

No virus found in this incoming message.Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.11.48/2049 - Release Date: 04/09/09 06:09:00

[Guest guest]

Hi ,Sorry to hear you struggling with the increased joint pain....and NOT having good sleep doesn't help either. ugh. I had issues with LDN at night too and after 6wks switched to day-time dosing....however, I don't have MS and being awake during the 'blockade' that LDN causes has never been an issue for me. After a few months of day-time dosing I switched back to night-time dosing and didn't have as hard a time. I slept OK -- but still NOT as good as when I day-time dose. It's an individual choice. I've also experienced increased joint pain as my cycle approaches. My doctor explained that it was due to increased inflammation from the uterus releasing "prostaglandins"....and that in-turn affects the joints synovial fluid...and so on. I can take an Advil and be OK with it...not sure if that's an option for you or not. I've read that if there is a high level of progesterone then the uterus can't produce the prostaglandins...so if you only experience this joint pain when you're approaching your cycle maybe it's because you're low on progesterone. ..??... Dunno....just an idea.I hope you get it figured out and get to feeling better. I know it's hard when you first start something...but hang in there...you'll get it figured out. Best wishes,Jann

[Guest guest]

Thanks for your response. Can I ask what you are taking LDN for? I really do

not have MS, but long term chronic lyme. Do you feel LDN has helped you and if

so how? I am struggling to figure out if it is worth all this. I do not

typically have joint pain. I do have severe sleep issues and had read that for

some it actually helps with sleep. I am apparently not one of those! Anyway,

is your joint pain severe? This was almost debilitating. Although I still have

it it is getting better, but not until I stated taking major doses of Allicin.

It felt more like a raging infection than anything. It started with me aching

all over like I was about to get the flu, then moved to those two joints, then

was starting to move to others. I wondered if I had made something in my joints

or tissues mad, or it could be sometype of die off. I am also doing far

infrared saunas and had done a pretty intense one the day this all started. Also

taking lots of Vit D3 wich is a new supplement for me. Hard to know.....

>

>

> Hi ,

>

> Sorry to hear you struggling with the increased joint pain....and NOT

> having good sleep doesn't help either. ugh. I had issues with LDN at

> night too and after 6wks switched to day-time dosing....however, I don't

> have MS and being awake during the 'blockade' that LDN causes has never

> been an issue for me. After a few months of day-time dosing I switched

> back to night-time dosing and didn't have as hard a time. I slept OK --

> but still NOT as good as when I day-time dose. It's an individual

> choice.

>

> I've also experienced increased joint pain as my cycle approaches. My

> doctor explained that it was due to increased inflammation from the

> uterus releasing " prostaglandins " ....and that in-turn affects the joints

> synovial fluid...and so on. I can take an Advil and be OK with

> it...not sure if that's an option for you or not. I've read that if

> there is a high level of progesterone then the uterus can't produce the

> prostaglandins...so if you only experience this joint pain when you're

> approaching your cycle maybe it's because you're low on progesterone.

> ..??... Dunno....just an idea.

>

> I hope you get it figured out and get to feeling better. I know it's

> hard when you first start something...but hang in there...you'll get it

> figured out.

>

> Best wishes,

> Jann

>