Re: looking for confidence

[Guest guest]

In a message dated 7/3/2005 11:12:32 AM Eastern Daylight Time, mickmac1uk@... writes:

She has started LDN 3mg 6 days ago and after 2 days started to experience apparent aggravation of her symptoms.I desperately need feedback from you guys out there on the medication as my confidence is shot to pieces.I am obviously praying for this to work and halt the progression.I guess i really need to

Mick-mac

This is what Dr. Lawrence from the UK believes regarding a return of symptoms. Hope it helps alleviate some fears. I have MS (secondary progressive) and have taken LDN since April 2004. I did not have some of the major symptom relief that others have experienced, but it has helped stop the progression. I didn't see any symptoim relief (bladder) for about 7-8 months, and it is variable still.

When starting this therapy in the treatment of MS, there may also be someinitial transient, though temporary increase in MS symptoms.Experience in using this method has demonstrated such as disturbed sleep,occasionally with vivid, bizarre and disturbing dreams; also perhaps an apparentincrease in the symptoms of MS, such as muscle spasm, tiredness or pain. Theseincreased symptoms would not normally be expected to last more than seven to tendays.This temporary increase in symptoms may 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 controllinginfluence of the suppressor T -cells within the immune system. During an acuterelapse, the overall number of T -cells is reduced, the normal balance of helperT -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 anacute relapse but occurs similarly, but to a lesser extent, in chronicprogressive MS.Under the influence of LDN there will be an expected increase in the overallnumbers of T - cells but, because the CD-4, helper T -cells tend to predominateat this time, an increase in their numbers will expectedly tend to increase MSsymptoms.It is only when the numbers of suppressor T -cells effectively .'catch up" thatthe normal balance is restored and symptoms once again diminish and improve.Dr M R LawrenceDietary Research Ltd.2nd August 2002

[Guest guest]

In a message dated 7/3/2005 10:12:54 AM Central Daylight Time, mickmac1uk@... writes:

I am a distraught dad.I have learned in the last couple of months that my 28 year old daughter has primary progressive MS and am totally devastated to see her plight.She has started LDN 3mg 6 days ago and after 2 days started to experience apparent aggravation of her symptoms.I desperately need feedback from you guys out there on the medication as my confidence is shot to pieces.I am obviously praying for this to work and halt the progression.I guess i really need to speak to other people in this situation as well as I am really struggling to cope .

Regards:-Mick Mac

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

Dearest Mick Mac,

I know your anxiety and frustration. I, too, am PPMS. First symptom at age 35. I'm now 42. I progressed quickly. By 38, I couldn't stand or walk. Been in the chair ever since. I wish I had known about LDN back then. I wasted two years on Avonex. I stopped it in Nov '99. I started LDN Nov '03. I have seen enough improvement to continue. My life is no picnic, but LDN has helped.

Tell your daughter to be tough. I know; easier said than done. She may have to get very angry in order to pull herself up. I did. Just be there for her. Only tell people what she wants told.

Marcie

[Guest guest]

In a message dated 7/3/2005 2:55:56 PM Central Daylight Time, mickmac1uk@... writes:

marcie thank you so much for your reply.My daughter is

struggling to walk has numbness and weakness in the

legs and all kinds of other problems.She does not need

a chair at the moment but if things dont slow down

fast she will do.The good news is that today has been

her best day so far and she feels slightly less

numbness and slightly more strength.How long was it

before you felt improvements and if its not too

personal what were the improvemments.

regards:-Mike

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

Mike,

I had bladder improvement within 24 hours of starting. I can now leave the house without the fear of an accident. Although, I am very careful to watch what and how much I drink. I have more sustained energy. Those are my two improvements on LDN.

My vision returned after 6 months on Pregnenolone (30mg) and DHEA (25mg) per day. This was my initial symptom. My vision has been good ever since late '01. Doctors were not optimistic about that. I attribute this to the supplements.

I know the weakness you speak of. I feel so for your daughter. I felt as if I had so many steps in me each day, and once they were used up, that was it. Diet is very important. Reduce/eliminate refined carbs such as white sugar and flour. Watch the bad fats. A good book is The Gold Coast Cure. Really explains the diet aspect.

Hang in there!

Marcie

[Guest guest]

marcie thank you so much for your reply.My daughter is

struggling to walk has numbness and weakness in the

legs and all kinds of other problems.She does not need

a chair at the moment but if things dont slow down

fast she will do.The good news is that today has been

her best day so far and she feels slightly less

numbness and slightly more strength.How long was it

before you felt improvements and if its not too

personal what were the improvemments.

regards:-Mike

--- marciemjm@... wrote:

> In a message dated 7/3/2005 10:12:54 AM Central

> Daylight Time,

> mickmac1uk@... writes:

>

>

> >

> > I am a distraught dad.I have learned in the last

> couple of months that

> > my 28 year old daughter has primary progressive MS

> and am totally

> > devastated to see her plight.She has started LDN

> 3mg 6 days ago and

> > after 2 days started to experience apparent

> aggravation of her

> > symptoms.I desperately need feedback from you guys

> out there on the

> > medication as my confidence is shot to pieces.I am

> obviously praying

> > for this to work and halt the progression.I guess

> i really need to

> > speak to other people in this situation as well as

> I am really

> > struggling to cope .

> >

>

>

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

>

> Dearest Mick Mac,

>

> I know your anxiety and frustration. I, too, am

> PPMS. First symptom at age

> 35. I'm now 42. I progressed quickly. By 38, I

> couldn't stand or walk.

> Been in the chair ever since. I wish I had known

> about LDN back then. I wasted

> two years on Avonex. I stopped it in Nov '99. I

> started LDN Nov '03. I have

> seen enough improvement to continue. My life is no

> picnic, but LDN has

> helped.

>

> Tell your daughter to be tough. I know; easier said

> than done. She may have

> to get very angry in order to pull herself up. I

> did. Just be there for

> her. Only tell people what she wants told.

>

> Marcie

>

___________________________________________________________

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[Guest guest]

Please e-mail me personally with a list of her symptoms and I will try to help you as I am sure many others will too. We have some very caring, informative and a vast number of people who all have different kinds of ms who will help your family through this. Kathy

[low dose naltrexone] looking for confidence

I am a distraught dad.I have learned in the last couple of months that my 28 year old daughter has primary progressive MS and am totally devastated to see her plight.She has started LDN 3mg 6 days ago and after 2 days started to experience apparent aggravation of her symptoms.I desperately need feedback from you guys out there on the medication as my confidence is shot to pieces.I am obviously praying for this to work and halt the progression.I guess i really need to speak to other people in this situation as well as I am really struggling to cope .Regards:-Mick Mac

[Guest guest]

Hi Mick Mac, Sorry to hear about you daughter, here is our tale of woe!.

My wife has PPMS, and was dxed in Dec 2000 at age 60. She got a little worse

and had another excaberation in Dec 2004, which effected her speech. The

first excaberation effected her balance and therefore her walking.

We started on Avonex ( weekly injection)that put her to bed for at least 24

hours with server 'flue like symptoms. this lasted for 8 months, In Feb

2005 she started LDN at 2.25 mgs for about 2 weeks without any after

effects except slight insomnia. She then went on to the full dose of 4.5

mgs and has been on that ever since. She used to be a wonderful seamstress ,

making all my shirts and jerseys for all the family, but had to stop

knitting in Oct last year because her fingers would not function properly,

in fact had to get a friend to finish a jersey she was knitting for our

grand-daughter. In April this year she started knitting again ( after only

2 months on LDN)and has finished another jersey for our G-D. She is now

hand knitting a blanket for our G-Son. We put the improvement down to LDN

and nothing else! We can only get 4.5 mgs pills here in South Africa, unless

we import LDN.

Get your daughter on to LDN as soon as possible and I am sure she will hold

her own. If I can help in any other way please contact me privately on my

email address. Malcolm

[low dose naltrexone] looking for confidence

>I am a distraught dad.I have learned in the last couple of months that

> my 28 year old daughter has primary progressive MS and am totally

> devastated to see her plight.She has started LDN 3mg 6 days ago and

> after 2 days started to experience apparent aggravation of her

> symptoms.I desperately need feedback from you guys out there on the

> medication as my confidence is shot to pieces.I am obviously praying

> for this to work and halt the progression.I guess i really need to

> speak to other people in this situation as well as I am really

> struggling to cope .

> Regards:-Mick Mac

>

>

>

>

>

>

[Guest guest]

-- Re: [low dose naltrexone] looking for confidence

Malcolm, your wife's experience is a very emotional one for me. I felt so much joy when I read she was able to knit again. This makes it all worthwhile when we read inspiring stories. There is hope for everyone no matter the health condition. God Bless you and Yours.

[low dose naltrexone] looking for confidence>I am a distraught dad.I have learned in the last couple of months that> my 28 year old daughter has primary progressive MS and am totally> devastated to see her plight.She has started LDN 3mg 6 days ago and> after 2 days started to experience apparent aggravation of her> symptoms.I desperately need feedback from you guys out there on the> medication as my confidence is shot to pieces.I am obviously praying> for this to work and halt the progression.I guess i really need to> speak to other people in this situation as well as I am really> struggling to cope .> Regards:-Mick Mac>>>>>>

[Guest guest]

Malcolm, your wife's experience is a very emotional one for me. I felt so much joy when I read she was able to knit again. This makes it all worthwhile when we read inspiring stories. There is hope for everyone no matter the health condition. God Bless you and Yours.

[low dose naltrexone] looking for confidence>I am a distraught dad.I have learned in the last couple of months that> my 28 year old daughter has primary progressive MS and am totally> devastated to see her plight.She has started LDN 3mg 6 days ago and> after 2 days started to experience apparent aggravation of her> symptoms.I desperately need feedback from you guys out there on the> medication as my confidence is shot to pieces.I am obviously praying> for this to work and halt the progression.I guess i really need to> speak to other people in this situation as well as I am really> struggling to cope .> Regards:-Mick Mac>>>>>>

[Guest guest]

Mic Mack, I'm sorry about your daughter. What type of aggravation is

she having and what dosage of LDN is she taking? I'm asking because I

began taking 4.5 mg about 18 months ago. Within a day or two I was

stiffer and more spastic than I'd been before. I felt like I was 99.

When I was able to reach Dr. Bihari a couple of days later, he

immediately told me to go down to 3 mg. That made a real difference and

I've been on it ever since. I also experienced pretty bad insomnia for

about six weeks, which is longer than most but common when first taking

LDN. Feel free to e-mail me directly.