Re: New here, about to start LDN

[Guest guest]

Hi Amy,

On ldn I had some relief and then I feel that it is halting the progression. Along with the ldn I am on a great nutrition program and that is turning symptoms around for me. I am spms and feeling better each day. If you are interested in learning more - email me individually.

I don't think I will ever be without ldn - but I believe the only promise is that is stops the progression - anything else is a bonus....

Lori

[Guest guest]

Hi Amy,

I also lurk on the site a lot. I started LDN in Jan 05. I was

diagnosed 4/04. I started on copaxone and then went to a new nuro who

recommended avonex. In jan I lost the use of my right hand and I was

very discouraged and had been reading about ldn since I was

diagnosed. When I couldn't put a pony tail in my 4 year old hair i

decided I would give LDN a try. I have noticed a significant decrease

in my tingling but i have to say is it my nerves healing or is it the

LDN I don't know. It is a nerve racking decision and I hope I have

made the right decision. Kim

[Guest guest]

Hi, Kim-

I wish you all the best. My hope is that the LDN is helping to heal your nerves. I have a friend on another site who is convinced that LDN stops the exacerbations and progression in order to give the nerves and scars a chance to heal, renew and regenerate. Lets all hope this happens to us. Thanks for the response.

Take care,

Amykjwxau2004 <kzern@...> wrote:

Hi Amy,I also lurk on the site a lot. I started LDN in Jan 05. I was diagnosed 4/04. I started on copaxone and then went to a new nuro who recommended avonex. In jan I lost the use of my right hand and I was very discouraged and had been reading about ldn since I was diagnosed. When I couldn't put a pony tail in my 4 year old hair i decided I would give LDN a try. I have noticed a significant decrease in my tingling but i have to say is it my nerves healing or is it the LDN I don't know. It is a nerve racking decision and I hope I have made the right decision. Kim

[Guest guest]

I'm certainly no expert but feel more like one than a neurologist because when ms happens to you if you are a proactive person, you do alot of research. I don't think you have to worry about LDN making you worse. Start gradual and work your way up to 3.0. If you feel good on 3.0, don't go to 4.5. That is what Skip told me. He said save the 4.5 increase if you ever feel the 3.0 isn't doing its job. I had an attack and tried 4.5. Felt terrible. It seemed too strong for me. You will know right away if the LDN is making you worse I think. From the nature of your course of ms, it sounds very transient almost predictable in the sense no symptom lasts for a long time. That has been my course for the last 10 years and it has not progressed. It has actually reversed in many ways. Hope what I said makes sense to you and is of benefit. Best to you, kathy

[low dose naltrexone] New here, about to start LDN

Hi,I've been lurking for a while, and reading all of your posts. I was dx'd with RRMS in Jan 05, and started Copaxone in March. But I keep getting new sensory symptoms, a new one every month. They last, at the most, a day or two, then go away. I'm still doing great, and feel in some ways that I am getting better. I lost the ability to run in Dec. 04 and my vision was disrupted in Nov 04 (shimmers, severe light sensitivity). Now I can run again and my vision has greatly improved. But the sensory symptoms don't seem to be letting up. My concern with this is that I am progressing and unaware of it. So based on all of my research, I decided to go on LDN with the hope of halting any progression while I am still doing really well. I ordered my Rx from Skip's and it should be here tomorrow or Friday. But I am concerned: Most people on this site, and others, seem to feel they have stopped progression and some even feel better on LDN. But a few feel they have worsened, and I guess I'm nervous about that. Do you feel that MS worsening on LDN is a rare oddity? Any info would be greatly appreciated. Thanks for a great forum here; it has been invaluable to me.Take care,Amy

[Guest guest]

Amy,

If you can run again That is AWESOME!

When I stopped running, I could not run again. My calves and reflexes

just had no spring and I was more likely to fall if I tried. MS is

insidious

and even when on LDN you need to keep in shape. If I had had LDN

and the guidance of " the Gold Coast Cure " (Book) I'd be 500% better

today than I am now. Use it or Loose it!

You have a great opportunity here siince you diddn't go into shock

and become fatalistic like I did at the beinning of my condition.

I reccommend the book because it is a " guideline " which works for me.

-

[low dose naltrexone] New here, about to start LDN

Hi,

I've been lurking for a while, and reading all of your posts. I was

dx'd with RRMS in Jan 05, and started Copaxone in March. But I keep

getting new sensory symptoms, a new one every month. They last, at

the most, a day or two, then go away. I'm still doing great, and

feel in some ways that I am getting better. I lost the ability to

run in Dec. 04 and my vision was disrupted in Nov 04 (shimmers,

severe light sensitivity). Now I can run again and my vision has

greatly improved. But the sensory symptoms don't seem to be letting

up. My concern with this is that I am progressing and unaware of

it. So based on all of my research, I decided to go on LDN with the

hope of halting any progression while I am still doing really well.

I ordered my Rx from Skip's and it should be here tomorrow or

Friday.

But I am concerned: Most people on this site, and others, seem to

feel they have stopped progression and some even feel better on

LDN. But a few feel they have worsened, and I guess I'm nervous

about that. Do you feel that MS worsening on LDN is a rare oddity?

Any info would be greatly appreciated.

Thanks for a great forum here; it has been invaluable to me.

Take care,

Amy

[Guest guest]

Hi, -

I'm sorry you can't run anymore right now. But I hope with this diet and LDN and everything else you might be doing, your running will become a reality for you again. I didn't want to give you or the group the wrong idea. I'm not a runner (like marathons and such). I just have 2 little kids (ages 1 and 3) that I literally chase all day long. Right after my diagnosis, I stopped taking them out with just me during the day for fear that my 3 year would take off and I wouldn't be able to chase her down. She and I run all over the house and the yard now. She loves to play tag, and is getting faster every day, which is great for me, because I have to get faster. Use it or lose it, just like you said!

Before I was dx'd I really suspected MS, and I told my husband and family, "Whatever this thing is, I am going to fight it tooth and nail." And I have. I look at my diagnosis and say, "Aw....you picked the wrong girl!" A few days after the diagnosis, I found the Swank diet and have been on it ever since. I highly recommend it to anyone, even those without MS. It is just a healthy way of eating. I credit that with giving me back some of my strength and ability I was losing back this past winter. But I am VERY curious about this "Gold Coast Cure". I've heard so many say some awesome things about it.

Anyway, better go and stop being a blabbermouth.

Take care,

AmySaberkat7@... wrote:

Amy,If you can run again That is AWESOME!When I stopped running, I could not run again. My calves and reflexesjust had no spring and I was more likely to fall if I tried. MS is insidiousand even when on LDN you need to keep in shape. If I had had LDNand the guidance of "the Gold Coast Cure" (Book) I'd be 500% bettertoday than I am now. Use it or Loose it!You have a great opportunity here siince you diddn't go into shockand become fatalistic like I did at the beinning of my condition.I reccommend the book because it is a "guideline" which works for me.- [low dose naltrexone] New here, about to start LDN

Hi,I've been lurking for a while, and reading all of your posts. I wasdx'd with RRMS in Jan 05, and started Copaxone in March. But I keepgetting new sensory symptoms, a new one every month. They last, atthe most, a day or two, then go away. I'm still doing great, andfeel in some ways that I am getting better. I lost the ability torun in Dec. 04 and my vision was disrupted in Nov 04 (shimmers,severe light sensitivity). Now I can run again and my vision hasgreatly improved. But the sensory symptoms don't seem to be lettingup. My concern with this is that I am progressing and unaware ofit. So based on all of my research, I decided to go on LDN with thehope of halting any progression while I am still doing really well.I ordered my Rx from Skip's and it should be here tomorrow orFriday.But I am concerned: Most people on this site, and others, seem tofeel they have

stopped progression and some even feel better onLDN. But a few feel they have worsened, and I guess I'm nervousabout that. Do you feel that MS worsening on LDN is a rare oddity?Any info would be greatly appreciated.Thanks for a great forum here; it has been invaluable to me.Take care,Amy

[Guest guest]

Thanks Kathy! Your story gives me hope.

Take care,

Amykathy lintzenich <mykittypaws@...> wrote:

I'm certainly no expert but feel more like one than a neurologist because when ms happens to you if you are a proactive person, you do alot of research. I don't think you have to worry about LDN making you worse. Start gradual and work your way up to 3.0. If you feel good on 3.0, don't go to 4.5. That is what Skip told me. He said save the 4.5 increase if you ever feel the 3.0 isn't doing its job. I had an attack and tried 4.5. Felt terrible. It seemed too strong for me. You will know right away if the LDN is making you worse I think. From the nature of your course of ms, it sounds very transient almost predictable in the sense no symptom lasts for a long time. That has been my course for the last 10 years and it has not progressed. It has actually reversed in many ways. Hope what I said makes sense to you and is of benefit. Best to you, kathy

[low dose naltrexone] New here, about to start LDN

Hi,I've been lurking for a while, and reading all of your posts. I was dx'd with RRMS in Jan 05, and started Copaxone in March. But I keep getting new sensory symptoms, a new one every month. They last, at the most, a day or two, then go away. I'm still doing great, and feel in some ways that I am getting better. I lost the ability to run in Dec. 04 and my vision was disrupted in Nov 04 (shimmers, severe light sensitivity). Now I can run again and my vision has greatly improved. But the sensory symptoms don't seem to be letting up. My concern with this is that I am progressing and unaware of it. So based on all of my research, I decided to go on LDN with the hope of halting any progression while I am still doing really well. I ordered my Rx from Skip's and it should be here tomorrow or Friday. But I am concerned: Most people on this site,

and others, seem to feel they have stopped progression and some even feel better on LDN. But a few feel they have worsened, and I guess I'm nervous about that. Do you feel that MS worsening on LDN is a rare oddity? Any info would be greatly appreciated. Thanks for a great forum here; it has been invaluable to me.Take care,Amy

[Guest guest]

Amy, I lost 17 pounds on that diet and got really skinny. I didn't look well. I think it is a good diet and Swank was way ahead of his time and did not get the recognition he should have received. If you take alot of EFAS with the Swank diet it should enhance your progress further. From my readings, they think that is what was missing from the diet even though he promotes the use of cod liver oil, it isn't enough EFAS. Look up Pageler on the computer. He has a good list of supplements and a free newsletter.Best Wishes, Kathy and you have a great weekend also!!!!!!!!!!!

[low dose naltrexone] New here, about to start LDN Hi,I've been lurking for a while, and reading all of your posts. I wasdx'd with RRMS in Jan 05, and started Copaxone in March. But I keepgetting new sensory symptoms, a new one every month. They last, atthe most, a day or two, then go away. I'm still doing great, andfeel in some ways that I am getting better. I lost the ability torun in Dec. 04 and my vision was disrupted in Nov 04 (shimmers,severe light sensitivity). Now I can run again and my vision hasgreatly improved. But the sensory symptoms don't seem to be lettingup. My concern with this is that I am progressing and unaware ofit. So based on all of my research, I decided to go on LDN with thehope of halting any progression while I am still doing really well.I ordered my Rx from Skip's and it should be here tomorrow orFriday.But I am concerned: Most people on this site, and others, seem tofeel they have stopped progression and some even feel better onLDN. But a few feel they have worsened, and I guess I'm nervousabout that. Do you feel that MS worsening on LDN is a rare oddity?Any info would be greatly appreciated.Thanks for a great forum here; it has been invaluable to me.Take care,Amy