An End To Autoimmune Disease Progression

On June 15, 2007, I went to Chicago to take part in a procedure called "Non-myeloablative Autologous Hematopoietic Stem Cell transplantation (HSCT) for Multiple Sclerosis" at Northwestern Memorial Hospital in Chicago, IL to put my RRMS (Relapsing-Remitting Multiple Sclerosis) into a long term remission. With testing and hospitalization, it took two months to complete.

As of this date (August 18, 2015), it has been a little over 8 years since the procedure. There has been no lesion activity as shown by MRI taken nearly every year since the procedure in 2007.

My goal with these pages is to spread the word of this procedure to all people who have an Autoimmune disease, to those who care for them, and maybe even to some doctors and/or Insurance Company Executives by keeping them informed of this procedure.

Unfortunately, this procedure is not for all those with MS. There are several criteria that must be met to qualify. It is my goal to find ways to inform those with Autoimmune diseases that may be interested and want to look into this procedure. This procedure has been very successful in putting people with MS into complete remission.

I was one of the first individuals to undergo this procedure for MS (or one very similar). Now there is an effort to spread the word. My friends, Sandi Selvi and Marc Coppins have both decided for this procedure. Their stories are inspiring.  

Many of us with MS and other Autoimmune Disorders are building a community in the hope of spreading the HSCT word so more people can stop the progression of these terrible diseases. If you are on Facebook, then check out this Facebook Group: Hematopoietic Stem Cell Treatment - MS &Autoimmune Disorders.

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My Mission

It is the mission of this website to provide the valuable information of this procedure and my recovery experiences to the MS Community (more than 2.5 million in the United States alone) and far more in the World at large. Sadly, this procedure is not for everyone with MS. It works best for those in the early RRMS (Relapsing - Remitting) stage. But the procedure has still been effective in halting progression in the SPMS and PPMS stages, as well. I am sorry to say that those with advanced disease MS may receive little symptomatic benefit from this procedure. However, each person is unique, as is each person's MS. I recommend a consult with Dr. Burt's office to get an evaluation appointment.

Would I undergo the procedure again, given what I now know? Absolutely, Yes! I have an unknown future again, with a better quality of life now. I see this procedure as the first step in curing MS for good. That being a halt to the progression of the disease from doing further damage, The second step being a way to regenerate myelin and to accelerate the creation of new neural connections to replace those destroyed.

My prayer for myself, and for those afflicted with this disease, is for everyone to understand that God would not place this burden on us if He felt we couldn't handle it. God is good. He gives strength, and answers our prayers according to His will. I pray that by undergoing and documenting this procedure, the message will get out that there is a viable treatment for MS (and other Autoimmune Diseases). If the procedure is done at an early stage in the disease progression, then there is a chance to dramatically improve quality of life and to halt further disease progression.

My experience with this disease thus far has proven without a doubt that God truly directs my life. He gave me unlooked-for opportunities when all things in my life looked hopeless. He showed me the truth that many things in my life that I thought were important, really were not. While I have disappointed people close to me and failed many times, God never fails.

I am a 60 year old male married to a marvelous woman named Charo. My profession is President and Founder of the non-profit charity, Immune Renewal Foundation. We live in San Diego, CA.

I am a Christian who believes God makes no mistakes; that He puts burdens in our are lives in order to bring us closer to Him. For detailed events, see My Symptoms Timeline.

I was diagnosed with Multiple Sclerosis in October, 2005 when I went to an Ophthalmologist due to blurred vision in my right eye that I could not see past. An MRI showed Optic Neuritis as the cause of my vision problem. Unfortunately, the MRI also showed multiple lesions in the white matter of my brain. This diagnosis explained why I was experiencing strange and bizarre symptoms for many years, but I just didn't know they were caused by MS. My vision returned after about 9 weeks.

The following months saw a progression of symptoms starting with fatigue, anxiety attacks, severe spasms in my chest, both legs, numbness and stiffness in both legs and arms. I walked with a cane at times. I was seen at the ER three times from September of 2006 to February of 2007. The disease progressed to the point where it became very difficult to walk due to numbness and spasms in my legs and back. The most debilitating symptoms were episodes of major depression that made daily life almost unbearable. However, the worst symptoms were cognitive in nature, such as short-term memory loss and diminished ability to mentally focus. I had always prided myself in being of above-average intelligence. But my new cognitive disabilities showed me how vain I really was about my cognitive abilities. I had always taken it for granted.

The number of prescriptions I took daily grew to such a quantity that I needed a small bowl to hold my thrice-daily dosage. I remember as a kid seeing my grandmother taking a lot of pills, but not as many as I now take. And these medications are solely to treat the symptoms, not the disease. I realized my doctors could do nothing for me. I knew at that point that I had to be my own advocate and help myself.

After my ER visit in September of 2006, I was out of work for several weeks. During that time, I researched the disease to become as familiar with its workings as possible. I spoke to many doctors and nurses. I had the privilege of speaking and corresponding with Dr. Dennis Steindler of the McKnight Brain Institute in Florida and Scott Johnson of the Myelin Repair Foundation in California. I learned that, to date there was no effective treatment in use by the general medical community to halt the progression of the disease (and there still isn't one today). The drugs that are available are prescribed to mitigate the symptoms, but have no real effect on disease progression. There are promising drugs in developmental stages. But none are currently approved by the FDA; and none likely to be approved for years.

As there was no drug option, I began to look for novel procedures that were used to treat other auto-immune diseases. That is how I discovered a procedure called Autologous Hematopoietic Stem Cell Transplantation offered at Northwestern University in Chicago, Illinois, led by Dr. Richard Burt. So in January of 2007, my wife and I flew to Chicago for a neurological evaluation. At the time, I was double-insured with Kaiser Permanente and Blue Cross. I was evaluated by Dr. Richard Burt of Northwestern Memorial Hospital in Chicago, IL, and was found to be a good candidate. Unfortunately, both Kaiser Permanente and Blue Cross twice denied coverage for this procedure, despite its high remission rate. The procedure involved no new medical processes nor new, unapproved drugs. Yet it's use as a treatment option for MS was relatively new. Both insurers denied coverage because they considered this treatment to be experimental (sic), not medically necessary, nor a better treatment option than the standard treatment protocols; and thus not a covered procedure.

This procedure was not a cure, but there was good statistical data that it could put me into a sustained remission (no more activity and no further progression), or to slow the progression of the disease long enough for an adequate treatment to be developed and approved by the FDA. Therefore, after careful consideration and much prayer we determined that our only option to obtain this treatment was to pay for it ourselves.

It was a financial challenge for us to obtain the initial deposit ($90,000) required to begin the procedure, considering the other financial obligations we already had. We had attempted to liquidate our real estate investments. But due to the Market downturn, could not get any buyers. We were finally able to sell one condo on a short-sale. But the other condo was foreclosed. We still had our primary residence, though.

We liquidated as many assets as possible, but it was not enough to cover the entire deposit. So, we requested and received a loan from my parents of the entire $90,000. This was a LOAN! The money came from their personal and retirement savings for which they worked their entire lives to save. We have been making monthly payments since then. Without their financial assistance, the procedure would not have been possible. The procedure cost actually exceeded $140,000. Needless to say, we were broke. Thank God my wife had a good, stable job.

We knew there would be challenges in deciding to do the procedure. I put up a Video Procedure Page which detailed my experiences during the two month procedure. It was not an easy experience to go through. There was much pain and discomfort, sleepless nights, weight loss, and loss of hair. But the MS symptoms I'd been experiencing during the 3 years prior were just as bad. I was released from the hospital on July 28, 2007.

It has been more than 8 years since the procedure. Some MS symptoms remain, but they are the same symptoms I had prior to the procedure. Some of the symptoms have diminished, very gradually. My strength also returned slowly. I can walk with a somewhat normal gait, staying on my feet for longer periods before the symptoms start up again. More important to me is that my cognitive abilities seem to be improving at a faster rate. (thank God!). While my disease progression has been halted, and many symptoms have improved, I still retain a fair amount of disability. In addition, I still take too many prescription drugs; but no more immune modulating drugs (No More Injections!). The drugs I take now are for symptomatic relief. They enable me to do more things than before without much discomfort.

I have had only a couple of major depression episodes since July of 2010; and they were both my fault. In one case, I pushed myself too much physically, which triggered a cycle of old MS symptoms, that included depression. In another case, personal and financial problems triggered another old MS symptom cycle. Both took several weeks to recover from.

Since my immune system was reset by the procedure, I'm optimistically certain that I won't get any new relapses (No new lesions in my brain). The MRI's I have received since the procedure have shown no new or active lesions. I see now that Dr. Burt was right, way back in 2007, when he told me that any healing or improvements may take 3-4 years (or more) to truly manifest. My brain appears to have been attempting to heal the existing lesions. My immune system has returned to full strength.