PR for the Regular Joe

December 29, 2010

Public relations should save lives

What would you do if you were dying? If thousands in your sphere of influence shared your plight and you found a simple remedy, would share it?  If so, read on and use your power to promote to change lives.

Justin Wilbert was diagnosed with Multiple Sclerosis (MS) in October 2005. Like thousands of others with this disease, his body began to fail him.  The severity and speed with which his symptoms progressed quickly left him two options–fight or die.  Left intermittently blind and bed-ridden by the disease, Justin refused to be beaten and spent what energy he possessed aggressively researching treatment options.  During this time he endured every prescription drug and alternative treatment currently used for MS patients.  The only relief he found was in Tysabri, a drug with a risk of a brain disease.

In November 2009, Justin’s perseverance paid off.  Through extensive research, he discovered the liberation procedure.  He has since traveled to India to undergo the simple procedure.  The experimental procedure, only recently available in the United States, and not supported by most insurance plans, has  led to dramatic improvement in his condition.  Though he has not made a full recovery, Justin has regained his vision, a dramatic reduction in pain, and the ability to enjoy regular daily activities.  Essentially, he got his life back.

Now, Justin has one objective–provide the hope of recovery to others faced with this debilitating disease.  Currently, the liberation procedure is gaining momentum in the United States but awareness of this treatment is low.  Few have the opportunity to share the news of a life-saving treatment.  I hope you will join me in telling Justin’s story and changing the lives of thousands.

Below is an article from the newspaper in Justin’s hometown as well as the link for re-posting purposes.

http://dailyinterlake.com/news/local_montana/article_7a773bde-f2a7-11df-b179-001cc4c03286.html

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Local MS patient finds help far away

Brenda Ahearn/Daily Inter Lake Justin Wilbert, 31, of Kalispell, at his home on Tuesday. In the background is one of the sites Wilbert found providing information on Liberation Therapy. Wilbert traveled to India in August to have the experimental surgery and has had a marked improvement in his condition. 

Justin Wilbert, 36, of Somers had never been on a commercial airliner before he flew to New Delhi, India, in August — on borrowed money — for a radical surgical treatment for multiple sclerosis.

He was not disappointed by the results.

“My vision improved a ton and my legs don’t feel like they’re 50 pounds and full of concrete,” Wilbert said. “My pain is dramatically decreased.”

Although his neurologist warned him that the balloon angioplasty procedure had not been studied or approved for multiple sclerosis by the FDA, Wilbert decided to take the risk based on numerous Internet testimonials from MS patients around the world. From his perspective, he had little to lose.

“I went two years when I could hardly see — I was in and out of blindness,” he said. “I became bedridden and completely blind.”

Along with taking his sight, the disease had numbed his hands, feet, legs and torso and subjected him to agonizing nerve pain. Wilbert became confined to a wheelchair about two years ago.

It was a devastating development for a young man with an active lifestyle just five years ago. After growing up and attending Bigfork schools, Wilbert worked in Oregon for a few years, then returned to the Flathead Valley in 2003 to work with his stepfather in a tile-setting business.

He vividly remembers the day symptoms of the disease first appeared just before his 31st birthday. Wilbert and his girlfriend Katie Halcro were headed out of town on vacation.

Near Hot Springs, he noticed something wrong with his right eye.

“You know when you’re going down the road and you see heat waves?” he asked. “I saw them for the whole trip. When I went back to work, it was so bad I couldn’t read a tape measure. Then I went completely blind.”

Wilbert went to an eye doctor, then an eye specialist who referred him to a neurologist. After tests including an MRI that revealed lesions on his brain and spinal column, he received a diagnosis of multiple sclerosis on Oct. 15, 2005.

From that day forward, Wilbert began searching for a cure for this central nervous system disease that damages patches of protective myelin sheath covering nerve fibers in the brain and spine.

With electrical impulses disrupted by damaged myelin, multiple sclerosis manifests as a variety of symptoms such as fatigue, visual and speech impairment, numbness, nerve pain, weakness and much more.

“Every person has it differently,” Wilbert said. “My sight went quickly and I continued to deteriorate. My walking got really bad, then I had no feeling in my hands.”

He began spending 23 1/2 hours a day in bed from the overwhelming fatigue, getting up just long enough to eat a small amount. His weight plummeted by at least 50 pounds.

“One whole summer, I couldn’t use silverware,” he said.

Although Wilbert tried every prescription drug and alternative treatment thought to help, nothing made much difference except Tysabri, a drug with a risk of a brain disease. The disease — progressive multifocal leukoencephalopathy — is rare but deadly and the risk increases after multiple infusions.

“It’s basically a mold that grows on your brain and you become a vegetable,” Wilbert said. “I took it for 36 months.”

He credited Tysabri with getting him out of bed and improving his sight. But Wilbert worried as each infusion of the drug bumped up his risk. Wilbert said he wasn’t afraid to die but he didn’t want to lose his mind in the process.

His search on the Internet for a better alternative was rewarded on Nov. 9, 2009. He watched a Canadian television news show about chronic cerebro-spinal venous insufficiency, a syndrome in which blood flow from the brain and spine to the heart is compromised or reversed, a process called reflux.

“There was a new finding that most people with MS had stenosed (narrowed) veins in their necks,” Wilbert said. “It can be like a twist of a kink or a platelet that grows across.”

Italian Dr. Paolo Zamboni proposed a theory that malformed blood vessels caused toxic iron deposits in the brain, triggering an immune response and degeneration of the myelin sheath.

Treatment begins with angiography to confirm the syndrome followed by a balloon catheter threaded through vessels to the narrowed area, then inflated to open up the vein — called the liberation procedure.

“It’s exactly what they do for heart disease,” Wilbert said. “They go in from the femoral artery.”

Wilbert began researching clinics in the United States, Poland, Bulgaria, India and Costa Rica. He was on a waiting list for a New York clinic when he discovered Safemedtrip.com and Medanta Medicity, a New Delhi hospital that performed the liberation procedure with no waiting list.

“They arranged everything,” he said.

His neurologist expressed his reservations about the procedure and his safety but helped him by writing a letter to expedite his visa.

A friend loaned him $6,500 to cover for the procedure and about $5,000 more for travel and hotel expenses. According to Wilbert, a doctor who performs the same half-hour operation in San Francisco charges $80,000.

On Aug. 29, Wilbert and his girlfriend boarded a plane for a 30-hour flight to India.

“I never went outside in India. They don’t have handicapped accessible anything. The poverty is unbelievable,” he said. “The people were unbelievably nice and the hospital was super high tech. They all speak pretty good English.”

Wilbert was admitted to the hospital on Aug. 31 for a full range of imaging over three hours, followed by the liberation procedure.

“It’s a super simple thing that should be available to everyone,” he said. “It was painless.”

Wilbert felt immediate results with a feeling of warmth returning to his feet and sensation to his hands. In his hotel room, he was astonished to see his image in a mirror for the first time in years.

“I thought, ‘Am I really that scrawny,’” he said.

His appetite and energy soared by the day after the procedure as his pain diminished. Wilbert said he went from taking three to four pain pills a day to three to four a week.

“When I first got back from India, I loved going to bed,” he said with a smile. “I couldn’t wait to see what miracle I would find in the morning.”

After returning in September, he has had one treatment with Tysabri. The next week, he consulted with his neurologist and stopped his infusions.

Wilbert said his improvement has continued at a less dramatic pace. He has no regrets about the operation and would do it again if his blockages return.

“Where mine were, they almost never re-stenose,” he said.

His friends have organized a benefit Saturday at Buns by the Lake in Somers to help repay the cost of the trip to India as well as to spread the word about this procedure. Wilbert said patients in Canada and Australia are holding rallies to get government approval for this operation.

When people question if his results are simply from the placebo effect, Wilbert said he doesn’t care why it worked.

“I just know it works and that’s all I know,” he said. “I think a person with MS would be a fool not to get this.

Wilbert welcomes people to call him for details at 857-2235.

Reporter Candace Chase may be reached at 758-4436 or by e-mail at cchase@dailyinterlake.com.

6 Comments »

  1. Courtenay I think it’s awesome that you are spreading the word. More people than we think either have MS or knows someone that does. If this treatment is working for Justin it will probably work for many more. I will definitely repost this on my FB! Thank you for your heart in wanting to help 🙂

    Comment by Angie Nasrallah — December 29, 2010 @ 11:49 am | Reply

  2. Thank you for bringing CCSVI and it’s treatment to the public. For more information about CCSVI please visit the CCSVI Alliance website. CCSVI Alliance is a non-profit (501(c)3) organization dedicated to education and promoting awareness of CCSVI. They can be found at: http://www.ccsvialliance.org

    Comment by Andrea Wulkan — December 29, 2010 @ 5:57 pm | Reply

  3. Check out Facebook; there are many many people around the world that have had this same treatment in India, Bulgaria, the USA and even Mexico. I myself, had the procedure done in October and after wanting to die from pain & loss of abilities, I now have new hope again. My right hand, previously useless is about 98% back to where it should be, my fatigue level is 100% better, vision no real change. What I need to work on is my balance and walking. I am not working, they placed me on disability so I am using this and whatever funds I was able to raise to pay for my procedure. I had no stents and no CCSVI (but I think I do), and only 20-30% of my blood was flowing through my jugulars. So yes, this should be an approved treatment and unlike some of the prescribed drugs, an angio/veinoplasty should not cause brain infections. Most important, I have my life back and get back to living! Good luck & keep up the positive thoughts.. Lori

    Comment by lorimac63 — December 29, 2010 @ 6:00 pm | Reply

    • What a blessing to hear you are seeing great improvements. Knowledge is power and social media is a perfect medium to begin sharing hope for many who are desperately in need of a real solution such as CCSVI. Please continue to share your story and Justin’s.

      Comment by Big Sky Public Relations — December 29, 2010 @ 6:34 pm | Reply

    • Congratulations on your improvements. I had the procedure done in October in Tampa, Florida and have shown gradual steady improvement, especially with fatigue. But I’m grateful for this post because being part of the CCSVI community on Facebook and other forums makes me forget that still most people out there don’t have a clue what I’m talking about when I tell them I had a venoplasty for CCSVI. Today a doctor I went to for a mandatory SSDI exam almost laughed in my face when I told him I had the surgery. So education and getting the word out is the key. There will be a major conference of Interventional Radiologists in January in Miami, the 23rd Annual ISET, and they are devoting almost a full day of the 4 day conference to CCSVI. I predict it will be mainstream medicine in less than 5 years.

      Comment by Andrea — December 29, 2010 @ 8:00 pm | Reply

  4. You are lucky in the States, at least you can have the procedure. In Canada we are so behind on treatment, the neurologists don’t give this the proper respect it deserves. When I first heard about the “liberation” procedure in November of 09, I quickly made an appointment with a neurologist at the MS clinic at UBC hospital. As luck would have it, I was fortunate enough to be given a doctor that was a leader in research, so I thought yeah!! He basically rolled his eyes at me when I brought it up, and told me that I was getting too old for trials (I was 45 at the time). I can’t wait to go back and show him how well I am doing now. I have my MRI, Doppler & DVD of the procedure to show him, and hopefully my physical improvements will be enough to show him, this works. Good luck! I look forward to following your story. Lori

    Comment by lorimac63 — December 29, 2010 @ 11:20 pm | Reply


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