RE: Starting LDN and getting worse!

[Guest guest]

Reoccurance of some symptoms is typical for some. Stiffnes (extra) is common for some. This has been discussed over and over. It will take longer than 2 days to have a good read on what is going on. Naturally, your Nuero will not be supportive. Don't waste your time there. Steroids take a long time to rid themselves from your body. They may effect how LDN works for you. It's an individual thing.

Have hope, and if a miracle does happen for you, that would be great! If not, disease progression is what you're trying to slow/stop. Remember that! Time will tell. At least it sounds like you are still walking! A wheelchair is NO fun!

Hang in there!

Marcie

In a message dated 12/15/2004 5:40:01 AM Central Standard Time, pages@... writes:

I am into my second day after taking 3 mg LDN at night. I am currently walking like a sting puppet - much stiffer, weaker, loss of co-ordination, stability etc. I am wondering if I didn't leave a long enough gap after stopping my most recent course of Steroids (Prednisolone -2mg just two days before LDN). I take no opiate based pain killers and nothing else apart from the usual supplements/oils.

[Guest guest]

Yes it is all very scary! For the first two weeks upon taking LDN I was very stiff and had vivid dreams.

The stiffness has gone it has been 60 days and more. The results are wonderful for me. I ended steroids one day after 8 months of steroid IVs and then oral steroids now my life is getting back on track. I am less depressed, I have increased hand-eye coordination, less leg and arm spasms, bladder control, I can walk longer and longer periods of time. I am hoping to return to my work as a teacher someday. I hope this helps you also please give it time. I take 4.5 mgs. It can work! I wish you the best Happy Holidays. Joanne L.

-----Original Message-----From: Grrrr! [mailto:pages@...]Sent: Wednesday, December 15, 2004 6:37 AMlow dose naltrexone Subject: [low dose naltrexone] Starting LDN and getting worse!I am into my second day after taking 3 mg LDN at night. I am currently walking like a sting puppet - much stiffer, weaker, loss of co-ordination, stability etc. I am wondering if I didn't leave a long enough gap after stopping my most recent course of Steroids (Prednisolone -2mg just two days before LDN). I take no opiate based pain killers and nothing else apart from the usual supplements/oils. I know this is within the first three days but it is a little scary! Has anyone else had similar start up diffculties and if so, how long did they last? - what did you do to deal with them?If I can't get support from this group - then I am stuffed because my Neuro does not even want to 'waste time' talking about LDN or Aimspro!!

[Guest guest]

Hi Marcie, I agree with all you said, you are so right, thanks Joanne L

-----Original Message-----From: marciemjm@... [mailto:marciemjm@...]Sent: Wednesday, December 15, 2004 7:29 AMlow dose naltrexone Subject: Re: [low dose naltrexone] Starting LDN and getting worse!Reoccurance of some symptoms is typical for some. Stiffnes (extra) is common for some. This has been discussed over and over. It will take longer than 2 days to have a good read on what is going on. Naturally, your Nuero will not be supportive. Don't waste your time there. Steroids take a long time to rid themselves from your body. They may effect how LDN works for you. It's an individual thing. Have hope, and if a miracle does happen for you, that would be great! If not, disease progression is what you're trying to slow/stop. Remember that! Time will tell. At least it sounds like you are still walking! A wheelchair is NO fun! Hang in there! Marcie In a message dated 12/15/2004 5:40:01 AM Central Standard Time, pages@... writes:

I am into my second day after taking 3 mg LDN at night. I am currently walking like a sting puppet - much stiffer, weaker, loss of co-ordination, stability etc. I am wondering if I didn't leave a long enough gap after stopping my most recent course of Steroids (Prednisolone -2mg just two days before LDN). I take no opiate based pain killers and nothing else apart from the usual supplements/oils.

[Guest guest]

This should explain what you're going through.

For those of you in the first 3 months of LDN therapy Dr. Bob Lawrence from the

UK who has MS and uses LDN himself explains why the temporary increase in MS

symptoms

When starting this LDN(Low Dose Naltrexone) therapy in the treatment of MS,

there may also be some initial transient, though temporary, increase in MS

symptoms. Experience in using this method has demonstrated most commonly, such

as disturbed sleep, occasionally with vivid, bizarre and disturbing dreams,

tiredness, fatigue, spasm and pain. These increased symptoms would not normally

be expected to last more than seven to ten days.

Rarely, other transient symptoms have included more severe pain and spasm,

headache, diarrhea or vomiting. These additional symptoms would appear to be

associated with the previous frequent use of strong analgesics, which

effectively create an addiction and dependency, thus increasing the body's

sensitivity to pain. This temporary increase in symptoms may also perhaps be

explained when we consider the manner in which this drug is expected to work.

Initially, MS occurs due to a reduction in the activity of the controlling

influence of the suppressor T-cells within the immune system. During an acute

relapse, the overall number of T-cells is reduced, the normal balance of helper

T-cells and suppressor T-cells is disrupted and the damaging helper (CD-4)

T-cells tend to predominate. This is the situation most pronounced during an

acute relapse but occurs similarly, but to a lesser extent, in chronic

progressive MS. Under the influence of LDN there will be an expected increase in

the overall numbers of T-cells but, because the CD-4, helper T-cells tend to

predominate at this time, an increase in their numbers will expectedly tend to

increase MS symptoms. It is only when the numbers of suppressor T-cells

effectively " catch up " that the normal balance is restored and symptoms once

again diminish and improve. In addition, because LDN stimulates the immune

system and many of the drugs routinely used by the NHS in the treatment of MS

further suppress the immune system, LDN cannot be used in company with steroids,

beta interferon, methotrexate, azathioprine or mitozantrone or any other immune

suppressant drug. If there is any doubt, please submit a full list of the drugs

you are presently taking so that their compatibility may be assessed. In

addition, because LDN will also block the analgesic effects of any opiate drugs

(includes codeine, dihydrocodeine, morphine, pethidine or diamorphine) presently

being taken, the use of LDN will initially greatly increase the level of pain

experienced. It is therefore advisable that any opiate-like drugs be

discontinued at least two weeks before this treatment is initiated. When

starting the treatment it is essential that any untoward or adverse side-effects

are reported immediately so that the treatment process can be further assessed

and, if necessary, modified.

Dr. M R Lawrence

posted by

[Guest guest]

I have had no problem while on LDN like everyone else is complaining

about. Check out my post on ENIVA products.

ADJ

>

> I am into my second day after taking 3 mg LDN at night. I am

> currently walking like a sting puppet - much stiffer, weaker, loss

> of co-ordination, stability etc. I am wondering if I didn't leave

a

> long enough gap after stopping my most recent course of Steroids

> (Prednisolone -2mg just two days before LDN). I take no opiate

> based pain killers and nothing else apart from the usual

> supplements/oils.

>

> I know this is within the first three days but it is a little

> scary! Has anyone else had similar start up diffculties and if so,

> how long did they last? - what did you do to deal with them?

>

> If I can't get support from this group - then I am stuffed because

> my Neuro does not even want to 'waste time' talking about LDN or

> Aimspro!!

[Guest guest]

i am going today to neurologist , he already has one patient on l.d.n.

and she is my moms neighbor my mom told me about it matter of fact my

mom is going to neurologist with me today......candy from wisconsin

BEST WISHES THIS HOLIDAY SEASON-CANDY & STEVEN

i

[Guest guest]

On Wed, 15 Dec 2004 11:36:50 -0000, you wrote:

>If I can't get support from this group - then I am stuffed because

>my Neuro does not even want to 'waste time' talking about LDN or

>Aimspro!!

are you taking one of the ab r drugs? you need to stop these as well.

[Guest guest]

I am on my 14th day and still am waking up very stiff - like a string

puppet and quite weak too. Stretching helps a bit but some people say

this could last a few months even?? Not sleeping well either so

hopefully can stick with it that long. What you are experiencing is

not unusual...so I've heard from others on this forum.

Hopefully things improve for both of us!

Kathy H

On 15-Dec-04, at 4:36 AM, Grrrr! wrote:

>

> I am into my second day after taking 3 mg LDN at night.  I am

> currently walking like a sting puppet - much stiffer, weaker, loss

> of co-ordination, stability etc.  I am wondering if I didn't leave a

> long enough gap after stopping my most recent course of Steroids

> (Prednisolone -2mg just two days before LDN).  I take no opiate

> based pain killers and nothing else apart from the usual

> supplements/oils. 

>

> I know this is within the first three days but it is a little

> scary!  Has anyone else had similar start up diffculties and if so,

> how long did they last? - what did you do to deal with them?

>

> If I can't get support from this group - then I am stuffed because

> my Neuro does not even want to 'waste time' talking about LDN or

> Aimspro!!

>

>

>

>

>

>

>

>

>

[Guest guest]

i just returned home from neurologist asked him for l.d.n. and got

script we now have a pharmacy near by that fills prescriptions like

this, another patient had brought all th info in on it and she told me

too ask him for it......candy

BEST WISHES THIS HOLIDAY SEASON-CANDY & STEVEN

i

[Guest guest]

i started ldn 5 days after iv prednisolone . 7 days at 1gram dose. it was massive doses. i went to 3mg of ldn and now m on 4mg for this month. going to 4.5mg next month. i have some symptoms but generally feel better. hope that helps

-- [low dose naltrexone] Starting LDN and getting worse!

I am into my second day after taking 3 mg LDN at night. I am currently walking like a sting puppet - much stiffer, weaker, loss of co-ordination, stability etc. I am wondering if I didn't leave a long enough gap after stopping my most recent course of Steroids (Prednisolone -2mg just two days before LDN). I take no opiate based pain killers and nothing else apart from the usual supplements/oils. I know this is within the first three days but it is a little scary! Has anyone else had similar start up diffculties and if so, how long did they last? - what did you do to deal with them?If I can't get support from this group - then I am stuffed because my Neuro does not even want to 'waste time' talking about LDN or Aimspro!!

[Guest guest]

Hi, Candy. Just a bit of information here. If the compounding

pharmacy you are using is not accustomed to compounding LDN, just

keep an eye on things. I think all in all we agree that it is very

important to have a reputable compounder, and there are many out

there. If you have any problems, always consider this. Take care,

and good luck!

Kim

> i just returned home from neurologist asked him for l.d.n. and got

> script we now have a pharmacy near by that fills prescriptions like

> this, another patient had brought all th info in on it and she

told me

> too ask him for it......candy

>

> BEST WISHES THIS HOLIDAY SEASON-CANDY & STEVEN

>

> i

[Guest guest]

THANKS, I WILL REMEMBER THIS THESE ARE A FAMILY OWNED CHAIN OF

PHARMACIES, LOCATED IN OUR THREE TOWNS. THANKS AGAIB CANDY

BEST WISHES THIS HOLIDAY SEASON-CANDY & STEVEN

i