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Open Letter to the National MS Society About LDN
Dear National MS Society,
My name is Amber Johnson. I am a 30 year old mother of 5 children, ages 14, 11, 8, 7, and 4. I am a happily married woman of 15 years.
I was diagnosed with multiple sclerosis on October 12, 2007, just four days after my 30th birthday.
Like so many, I started my journey with steroids. But unfortunately, instead of helping, they just made me appear seven months pregnant.
The first neurologist I saw was in Salt Lake City, Utah. He assured me that, in my case, Avonex was the drug of choice. After some careful research, however, I learned he was on the Avonex payroll, and was essentially using me to make a few bucks.
I then found a new neurologist in Provo, Utah. He discussed all my options with me and, even better, wasn't on any drug company's payroll. After reading a great deal about the different drugs for MS, I decided to go on Rebif. At $1800.00 per month, that was not an easy choice.
I must say that, while I was on the titration pack, during which time the dosage was gradually increased, things where pretty good. I had no really noticeable side effects. After the first full strength injection, though, things got really BAD really quickly. In fact, 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 worse instead of better. I couldn't sleep without popping sleeping pills, because I was in so much pain. I had no energy. I wasn't able to care for my children at all. The worst part was, my children sat by and watched their mother--in their words--die. They insisted on sleeping with me every night, just in case I didn't wake up.
For six weeks I cried in pain and sorrow. Finally, 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 practitioner, and with my new neurologist. All signs pointed to: 'stop using the Rebif.' And so I did.
Now, I knew I had to get on some disease modifying drug, and quickly. After two weeks of research, I began reading about a medication called Low Dose Naltrexone (LDN). I first found out about it on the Montel Williams webpage. Then I took it even further by talking about it with everyone I could, including my neurologist, and Dr. Bihari himself (the New York physician who discovered its benefits). I was at first thrilled with the idea of a pill--NO MORE PAINFUL INJECTIONS!!!
Then my excitement grew as I learned that both the cost and the side effects of LDN are minimal. I was hearing and reading about wonderful turn-arounds in people's diseases; yes, I said diseases (plural), for not only was it helping MS, but many other autoimmune diseases, as well. So I got my prescription for LDN, and embarked on my LDN treatment regimen.
After just one night on LDN, I woke up feeling better than I had in years. My energy was awesome. Even better, my energy is STILL awesome. After one week on LDN, the weakness in my arm and leg were GONE!! Even better, I haven't had any weakness at all since starting LDN. My depression--yep, you guessed it--GONE!! Even better, it's still gone. After two weeks on LDN, I began sleeping better than I ever have in my life!! Even better, I still sleep wonderfully.
After three months on LDN, on March 3rd, 2008, I had another MRI (at the request of my neurologist). It showed no progression in my MS. Some old lesions had 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 breakfast for my kids, clean up the mess, and then send them off to school--and I still have energy left over!!
Now, I do rest for about an hour or so in the afternoon. But, hey, I have a teenager, and I need all the rest I can get to handle him.
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, 7 year-old daughter, my mother, and my grandmother, are ALL on LDN now. 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 among many about the amazing benefits of 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 with humans--not animals--for LDN in treating MS. Your organization 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 never smiled while on Rebif and neither did my family!!
Please help us put a face on LDN. Not just for MS sufferers, but for everyone who needs it. On your fund-raising walk scheduled for April 26th, 2008, 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.
An Introduction To Low Dose Naltrexone
An Open Letter To People With Multiple Sclerosis
Drugs To Avoid When Taking Low Dose Naltrexone
Side Effects & Dosing of Low Dose Naltrexone
How To Obtain Low Dose Naltrexone
Why I Became An Advocate For Low Dose Naltrexone
Send E-Mail to: nicknamedjaylo@yahoo.com
Copyright © 2009 Amber Johnson. All Rights Reserved