Re: Keep trying?

[Guest guest]

Sally, I think expecting not to avoid progression over the course of six

days is, in fact, expecting too much. I was having an attack of ON right

after I started, but I hadn't been taking LDN long enough to expect

otherwise, especially as I was under severe emotional stress.

I had to stop LDN for awhile. I plan to resume tonight.

You don't say why you decreased the dose. Did your doctor advise this?

Sally, LDN does NOT work for everyone, as I have seen attested. But I think

it's too early for you to judge. I also don't know about what LDN does if

you start it during a relapse. Some people see improvement on LDN. Others

for whom it works merely see a halt to or a slowdown of relapse. For some,

it seems a near miracle. For others, nothing. For the majority, it seems,

something in between.

I don't know if you use LDN with anything else. For me, it's Novantrone. I

hope to see results with this combo, but it's way too early for me to tell

anything.

Now, I'm dragging my right leg, as usual, but I'm still having a good

Christmas. You go have one too, you hear me, girl? ;-)

Best wishes,

Bou

[Guest guest]

According to Doctor Bob Lawrence in the UK. He is a medical doctor that has MS himself. He takes LDN and is a large proponent of it's use. He says with MS to expect to see a slight increase in preexisting symptoms when first starting LDN. The symptoms should (hopefully) decrease after a few weeks.

----- Original Message -----

From: Jeff & Sally

low dose naltrexone

Sent: Thursday, December 25, 2003 10:04 AM

Subject: [low dose naltrexone] Keep trying?

Okay. I started this at 4.5-mg on the 19th. I decreased to approximatley3-mg two days ago. I keep getting steadily worse. I have never been this badwith MS. Maybe this would have happened anyway...I was having a relapse whenI started it. I am impatient and really bummed out.I really feel that this is what I am supposed to be taking, but I have beensurprised that I am not getting better. I expected positive results...not toget so much worse. I am tired of hurting and being numb and dragging my leftleg. Shall I whine a bit more? Sitting and crying during the annualunwrapping of gifts was not what I planned today, and I came here to seewhat advice you might have. Thanks for listening. Sorry to dump. I am trying to look up, and I do stillconsider myself as my ending says, "Showevered by grace," but sometimes itis so hard...\o/ Showered by His amazing Grace,SallyTrust in the Lord with all your heart.Lean not on your own understanding.In all of your ways acknowledge Himand He will direct your path!Proverbs 3:5-6

[Guest guest]

Sally:

Here's what Dr. Lawrence says about starting LDN.

" When starting this 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. "

I know its hard to get owrse before you get better, but are they any

other things that might be causing a problem? Were you or are you

using any other drugs? One thing is for sure, you can always skip a

night and see if that helps. You'll know for sure then if its the

LDN causing the problem. My sister in law went thru about 2 weeks of

HELL when she started the LDN but she had been on pain killers and

steroids before she started. She has only had bad days for the past

seven months. Now after being on the LDN for about a month and a

half, she has good days and bad days. This is a major improvement

from all bad days. She is off all other drugs now except the LDN and

bee venom. I think you should tough it out but I know that's easy to

say when your not the person goin gthru the hard time. I'm sorry

that your Christmas has been riuned by your health issue. I hope

that you get some relief some. Maybe you should also change the time

your taking the LDN, I have heard that taking it an our earlier or

later can make a difference.

Good Luck and your in my prayers!

Debbie

> Okay. I started this at 4.5-mg on the 19th. I decreased to

approximatley

> 3-mg two days ago. I keep getting steadily worse. I have never been

this bad

> with MS. Maybe this would have happened anyway...I was having a

relapse when

> I started it. I am impatient and really bummed out.

>

> I really feel that this is what I am supposed to be taking, but I

have been

> surprised that I am not getting better. I expected positive

results...not to

> get so much worse. I am tired of hurting and being numb and

dragging my left

> leg. Shall I whine a bit more? Sitting and crying during the annual

> unwrapping of gifts was not what I planned today, and I came here

to see

> what advice you might have.

>

> Thanks for listening. Sorry to dump. I am trying to look up, and I

do still

> consider myself as my ending says, " Showevered by grace, " but

sometimes it

> is so hard...

>

> \o/ Showered by His amazing Grace,

>

> Sally

>

> Trust in the Lord with all your heart.

> Lean not on your own understanding.

> In all of your ways acknowledge Him

> and He will direct your path!

> Proverbs 3:5-6