Multiple Sclerosis (MS) Support Group

A recent post/testamony on the lowdosenaltrexone yahoo group:


A copy of a letter to Joyce at NMSS:

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Here is a copy of the letter I just emailed Joyce.


Dear Joyce,

My name is Amber Johnson. I am a 30 year old mother of 5
children ages 14, 11, 8, 7, 4. I am a happily married woman of 15yrs.
I was diagnosed with MS on October 12, 2007 just 4 days after my 30th
bday.
I started my journey with steriods just like everyone else. They
did not help just made me appear 7 months pregnant.
The first neuroligist I went to was Dr. Foley in Salt Lake City Utah.
He assured me Avonex was my only choice of drug. After some research
I found out that he (Dr. Foley) was on the Avonex payroll. He was
using me to make a few ($1000.00) bucks. I then found a new
neuroligist. Dr. John Watkins from Provo Utah. He discussed all my
options with me and even better he isnt on any drug companies
payroll. After reading ALOT about the different drugs for MS I
decided to go on Rebif. At $1800.00 per month this was not an easy
choice.
I must say that while I was on the titration pack things where
pretty good. No real noticeable side effects. But after the first
full strength injection things got really BAD. I have never felt so
bad in my life.
I began rapidly loosing muscle strength in my right arm and left
leg. My optic neuritis got even worse. I couldnt sleep without
sleeping meds because I was in so much pain.I had no energy. I wasnt
able to care for my children at all. The worst part is my children
sat by and watched their mother (in their words) die. They insited on
sleeping with me every night just in case I didnt wake up. For 6
weeks I cried in pain and sorrow.
I decided that no one was going to help me except me. So I began
doing research online, at the library and even with my General Doctor
and my Neuroligist. All fingers pointed to stop using the Rebif. So I
did.
Now I knew I had to get on something. After 2 weeks of research I
began reading about a drug called LDN. I first found out about it on
the Montel Williams web page. Then I took it even farther talking
about it with everyone I could. Including Dr. Bihari himself and my
neuroligist. I was at first thrilled with the idea of a pill. NO MORE
PAINFULL INJECTIONS!!! Then my excitement was the little to no side
effects of LDN. I was hearing and reading about wonderful turn
arounds in peoples diseases, yes I said diseases (plural) not only
was it helping MS but many other immune diseases. So I got my
prescription and embarked on my LDN journey.
After just one night of LDN. I woke up feeling better than I had in
years. My energy was awsome. Even better my energy is STILL awsome.
After one week on LDN the weakness in my arm and leg GONE!! Even
better I havent had any weakness at all since starting LDN. My
depression, yep you guessed it GONE!! Even better its still gone.
After 2 weeks on LDN. I began sleeping better than I ever have in my
life!! Even better I still sleep wonderfully.
After 3 months on LDN. On March 3rd I had another MRI (at the
request of my Neuroligist). Theres no progression in my MS. Some old
lessions have actually disappeared.

All and all I feel really good!! My kids are very happy with their
momma now. I am able to get out of bed and shower, get dressed,do my
hair and make-up, make my kids breakfast, clean up the mess and send
them to school and I still have energy!! Now I do rest for about an
hour or so in the afternoon. But hey I have a teenager, I need all
the rest I can get to handle him. lol I also work at a Bingo parlor
in the evenings. I love my job!! I had to give up my job while on the
Rebif. LDN gave me my wonderful job back!! LDN gave me my life back!!
I should also mention that my husband, daughter 7yrs old, my mother
and my grandmother are all on LDN now also. They too have experienced
wonderful healing with LDN. LDN has made my mom a new person!! I love
it and more importantly my mom loves herself now.

I am just one story in a million on LDN. Hundreds of people all over
the world are experiencing these same effects with LDN. Even better
there are no drug companies pushing it on us. We CHOOSE to take LDN.
LDN comes backed with real Human stories of amazement. We are REAL
people with REAL diseases and we choose REAL help. We all know that
LDN is not a cure but it is sure keeping us around and in good health
till a cure can be found.
I am asking the NMSS to starting funding a trial for LDN in MS.
There is one in California. I am sure they would love the backing of
the NMSS. Your charity has access to research money that could really
help LDN get its FDA approval. If you are willing to set up a fund
just for LDN research and trials I am willing to raise money for
that, as will hundreds of other people. As members of the NMSS let us
decide where the money goes. Let us raise the money for the things we
have found to work. An ad filled with people on LDN would show
smiling faces, lives changed and preserved. A Rebif add is a lie. I
nevered smiled while on Rebif and neither did my family!!
Please help us put a face on LDN. Not just for MS suffers but for
everyone who needs it.
On April 26th I will be wearing a T-shirt supporting LDN. I hope
everyone there will be too.
I am a face for LDN because I dont have to learn how to LIVE with MS
but I do have to learn how to BEAT it. And LDN is bringing me one
step closer.

Amber


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Larry, can you keep us posted on this. I'd be especially interested in knowing how NMSS responds. I fear the response will be the standard line of bull...., but I hope it will be to set up a fund for research.

http://tinyurl.com/yu5y55

had to create a tinyurl, links don't work in HUGS any more. This place is falling apart

I just created a new Group:

http://dailystrength.org/groups/ldn

http://www.youtube.com/watch?v=U1o...


"if you watch it could you rate it and leave some comments that would be great" - Cyndi Lenz

This has changed my life in a month and a half. Little by little I'm becoming NORMAL!!

I have borderline High Bloodpressure and take meds for this, Also on Rebif. I am very interested in LDN. Will the bloodpressure stop me from trying LDN? What I mean is, is there any kind of warning for LDN and Bloodpressure problems? If you know of a place I can find these things out, please let me know

I don't think there's any issue with high BP, my bro takes LDN and bp meds and cholestrol meds too.

http://ldn.proboards3.com/index.cgi is a good forum to double check, Brenda may have a more definitive answer there.

bump

love this post, gotta share it ;)

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

From: beach980too
To: lowdosenaltrexone@yahoogroups.com
Sent: Wednesday, May 21, 2008 08:55
Subject: [lowdosenaltrexone] Re: LDN and Pregnancy


Hello,
I wrote a message yesterday but for some reason it was never
posted. My daughter has MS and recently gave birth to her first
child. She stayed on her 4 mg dose of LDN throughout the pregnancy
and has never gone off of it, even now as she is nursing her little
girl. She has not had any problems nor has the baby. Last week we
went to the neuro and he was excited about how well she
was doing - he said it was awesome and that she should keep doing
what she's doing! He said he felt she was past the risk of a
postpartum relapse, which of course was wonderful to hear. My
granddaughter went to the doctor yesterday. The doctor called
her "gorgeous and perfect" - she's growing like a weed and extremely
alert and bright. (Of course, being the grandma I can hardly
disagree! Ha Ha!)

To answer a few of your questions - my daughter did have the support
of her doctor to stay on the LDN. We have seen no effects of the
LDN on the baby unless it is her bright eyes and amazing alertness.
She is very interested in her surroundings and has great
coordination for her age. Also, my daughter did not time the
feedings or pump at certain times. She nurses on demand.

Dr. Phil Boyle was instrumental in personally helping my daughter
decide what to do about the LDN. He has recently made his comments
public on the ldn website and feels it is entirely safe for both
pregnancy and nursing. I want to encourage you to stay on the LDN -
no matter how good you feel when you're pregnant I believe that
keeping it consistently in your system might be a good weapon
against a postpartum relapse. If I can help with anything else
please don't hesitate to write!
Beach