Novantrone

[Guest guest]

Hi, I completed the entire course of Novantrone. I had 11 infusions and

then hit my life maximum. When I started, I walked with a walker and used a

wheel chair outside of the house. My entire right side of my body, from my

waist down was " dead " , totally numb, no movement. I had other numbness and

problems but the right side was the most disabling. I had tried Avonex,

couldn't handle it, got very sick, so stopped. Never was on any other

CRABs. I was on 4 AP, ammantadine, and lots more to help with the problems

of MS. My neuro throught it would be good for me to try the Novantrone, so

I did. I am a huge success story. I went for infusions every 3 months at the

hospital, each time they checked my blood and watched my counts. My counts

did go down, so I would have to go back to the hospital daily for a shot of

Nuprogen. Just so you know, the first time I needed the Nuprogen I needed 3

days of shots, by the end I needed 8 days of shots. It took longer to get my

blood counts up the longer I was on the chemo. I also had an echo

cardiogram every 6 months and again at the end. Everything was terrific.

Now for the good news: Around the 9 month mark I suddenly felt the three

middle toes on my right foot. I was able to wriggle them! People were

astounded. Within a week, I was able to wriggle my little toe and then my

big toe. Unbelievable! Well, at that point a friend suggested that I try a

massage therapist to possibly get the muscles to wake up, it had been 7

years since they did anything. Before the therapist even got here my leg was

waking up, I could lift my foot (by myself), and in another week I bent my

knee. We were dancing in the streets. Now I can lift my leg and kick my kids

again- hehehe- This is (I can't believe it) a year after my last infusion

and I have not relapsed at all. My leg still feels like it is in a light

cast, but it works. Last January when I would have had another infusion if

I hadn't hit my maximum, I looked into copaxone because I didn't want to

lose anything I had gained with the Novantrone. I wasn't able to get any

help with funding so I needed to find something else. That is when I found

LDN. I have been on 3 mg every night since March and am not regressing at

all. I now walk with a cane, no more walker,(I do need the wheel chair in

malls and Costco...I get too tired) still don't drive (cognitive skills

still aren't wonderful, but weren't before Novantrone either) and with the

LDN I feel stronger. I really don't know if the LDN is working, like the

rest of us, no regression is terrific. In any case, I am thrilled with the

results of my Novantrone experience and am truly greatful for the LDN

keeping me going.

Wishing you all Happy Trails....Lynn

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[Guest guest]

Hi Zil,

Good, you made the right decision.

Regards,

Tom

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

From: zillba@...

low dose naltrexone

Sent: Sunday, August 01, 2004 11:09 PM

Subject: [low dose naltrexone] Novantrone

Dear Friends,

First I would like to thank you for all your thoughts, opinions, and experiences regarding novantrone.

After much thought and consulting my wife I have decided to reject this therapy. ( do I hear cheering?)

My Neuro made the great mistake, he lied to me. When I questioned him about the damage to my immune system he said "that is why you have MS you have an over active immune system" BUNK! If He knew what caused MS He would be very famous and not here in bumfuck TN But at Stanford or Mayo or somewhere like that.

Also my research showed no evidence that shutting down the immune system stops the progression of MS (His 2nd lie)

In fact speaking to a MS Nurse I was told "as you know, there is no way to stop progression, only slow it."

I started copaxone and I must admit I am a fan. Sure the shots are a pain, but they never hurt for more than 30 minutes then it is normal life. This is day 5 and I feel and my wife sees a difference in me. (can this be possible?) can this decoy be working that well?

I may take the final step to the best yet diet, But I have a question I love and often live on Protein shakes! There seems to be only soy and whey protein powder to make these fruit smoothie things and I would think both are a no no , One being a legume product and the other a dairy. What can I do?? I need these proteins because I eat hardly no meat (I just don't like it)

Again many thanks to all who addressed this issue, it was all very helpful to me.

Peace. Love and the truth are the best things to fight this, I will never give up, (and am staying on LDN 4.5 mg) I am blessed to have access to all your thoughts feelings. experiences and opinions. Thank you!

Peace be with you!

ZilNever give up, never surrender

[Guest guest]

Zil,

I also worry sometimes about the protein content

of my diet as I am mostly Vegan, however I can tell

you about the smoothies I used to live on if that's a

help.

I used to make these when I lived in South Africa as

there was a glut of fresh tropical fruits.

I find it too difficult to make them in Wyoming as the

fruit is not fresh here and expensive!

I have never made smoothies with milk, whether soy,

dairy or rice. I just use cold water.

For the protein I take 1 tblsp each of pumpkin, sesame

and sunflower seeds and grind until fine and blend

with fresh fruits. Sometimes I use flaxseeds too.

What is meant to be wrong with eating legumes on the

best bet diet? I do avoid red split lentils as my

hands go numb after eating them but I wouldn't know

what to eat if I couldn't eat legumes.

Audrey

--- zillba@... wrote:

> Dear Friends,

> First I would like to thank you for all your

> thoughts, opinions, and

> experiences regarding novantrone.

>

> After much thought and consulting my wife I have

> decided to reject this

> therapy. ( do I hear cheering?)

>

> My Neuro made the great mistake, he lied to me.

> When I questioned him about

> the damage to my immune system he said " that is why

> you have MS you have an

> over active immune system " BUNK! If He knew what

> caused MS He would be very

> famous and not here in bumfuck TN But at Stanford or

> Mayo or somewhere like that.

>

> Also my research showed no evidence that shutting

> down the immune system

> stops the progression of MS (His 2nd lie)

> In fact speaking to a MS Nurse I was told " as you

> know, there is no way to

> stop progression, only slow it. "

>

> I started copaxone and I must admit I am a fan. Sure

> the shots are a pain,

> but they never hurt for more than 30 minutes then it

> is normal life. This is day

> 5 and I feel and my wife sees a difference in me.

> (can this be possible?) can

> this decoy be working that well?

>

> I may take the final step to the best yet diet, But

> I have a question I love

> and often live on Protein shakes! There seems to be

> only soy and whey protein

> powder to make these fruit smoothie things and I

> would think both are a no no

> , One being a legume product and the other a dairy.

> What can I do?? I need

> these proteins because I eat hardly no meat (I just

> don't like it)

>

> Again many thanks to all who addressed this issue,

> it was all very helpful to

> me.

> Peace. Love and the truth are the best things to

> fight this, I will never

> give up, (and am staying on LDN 4.5 mg) I am blessed

> to have access to all your

> thoughts feelings. experiences and opinions. Thank

> you!

> Peace be with you!

>

> Zil

> Never give up, never surrender

>

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