Adult Stem Cells for Cystic Fibrosis – Overview

Several people are asking about the procedure, so I will share an overview here and try to answer all the questions.

The procedure is rather simple.  As a Cystic Fibrosis patient, I need a donor of adult stem cells.  Note that these are not embryonic stem cells, so there is no controversy.  The donor must be a close genetic match.  Usually siblings, children, or parents.  My stem cells will be mixed in so that my body does not reject it. Treatments for most conditions use the patients own stem cells.  Since CF is caused by genetic mutations, the CF patient’s stem cells will produce new lung tissue, but the tissue will still be CF affected and produce mucus. The donor can be a carrier, but not a CF patient. The donor stem cells will produce healthy lung tissue.  As a result, 3 people are necessary to travel for the procedure.  The patient, the donor, and a caretaker.

No medications or chemo.  They take bone marrow out of the donor.  They take bone marrow out of me and stem cells from body fat as well.  For CF that is a bit of a challenge, since I do not have much body fat.  What my doctor says is that the bone-marrow stem cells are very action oriented, and the body-fat stem cells are very nurturing to aid in the marrow cells doing their work.

They spin out the plasma and other stuff to get very concentrated stem cells.  They chill and stress the cells.  That causes the stem cells to proliferate.  Just like when you get a cut, your skin goes into hyper mode of growing new skin to heal the cut.  This is stem cells going to work in your body.

They treat the stem cells with growth hormones to further improve the process.

The next day, they introduce the stem cell mixture into my body.  Last time they did it through an IV in my arm.  The veins in the arm go first to the lungs, so the lungs will capture most of the stems cells.  My doctor tells my he is using a new procedure to improve delivery directly to the lungs.  Not sure what that is yet, but I will update this post as I learn more.

The procedure almost can be done as an outpatient procedure because of its simplicity.

Over the next several months post-procedure, the stem cells will grow new healthy lung tissue and begin the process of replacing bad CF-affected tissue.  Because of the extent of damage in my lungs, we knew from the beginning that I would need multiple treatments, but we still do not know how many.  Optimally, I should be getting the treatments every 10 months. But cost has been an issue.  I am doing fundraising to pay for the treatment and related costs.  If you know anyone who wants to help financially, please share this site: www.Give1Tell10.org.

You can read my other posts about my journey and the results in my blog at http://www.angelodistefano.com/category/the-journey-back-to-life/

The treatments are not approved by the FDA and are not legal in the U.S.   When I did my research, I learned that clinics in many countries are performing stem cell procedures, but I wanted a U.S. connection. It took me 2 years to find that connection.  Dr. Grekos is a U.S. Cardio-Vascular surgeon in the Naples, FL area.  He began treating his heart patients with adult stem cells in 2005 or 2006, and now treats several conditions.  He has treated spinal cord injuries, MS, and I was the 3rd CF patient. Now he is treating other CF patients.  His success rate with almost  1,000 procedures so far is almost 100%.  I don’t know of any conventional medical treatment with such a high success rate.

Because of the legal prohibition in the U.S., Dr. Grekos has a clinic set up in Santo Domingo, Dominican Republic—about a 2 hour flight from Miami. Since the treatments are not allowed in the U.S., insurance will not cover the costs.  The costs are high, and include the treatment, lab work to determine the closest genetic matches, and travel & lodging costs for 3 people for a few days.

There are some adult stem cell procedures being done now in the U.S., but they do not have the same amazing results.  The reason is that the legal procedures are very limited in scope. The U.S. does not allow anyone to donate stem cells for another person except in treating Leukemia (bone marrow is donated from one to another). It is illegal to leave the stem cells out of the body more than 24 hours (necessary for stressing the cells), and it is also illegal to activate the cells in any way, such as with growth hormones.  The only thing that these “legal” procedures claim to do is reduce inflammation.

I believe that these procedures will not be allowed in the U.S. anytime soon because the drug companies have too much to lose if they become legal.  I believe the drug companies are doing everything they can to keep these life-saving treatments illegal, because they will lose too much money if the treatments become mainstream.  Think about it.  For CF, a tune up can costs $50,000 or more.  I was needing IV-medication tuneups 4 times a year before my first stem-cell treatment. I have not needed a tuneup since my 1st stem cell treatment.  That is 3 years or 12 tuneups.  That is more than a half-million dollars the drug companies have lost due to my stem cell treatments. Unfortunately, the drug companies have a lot of control over the FDA.

I also learned how blinded the CF doctors are about this.  Most of them are strongly opposed to the adult stem cell procedures.  While I was researching stem cells, I asked my CF doctors at Vandy more than once about it.  One doctor said that stem cells absolutely do not work.  I said, “you are talking about embryonic stem cells.  I agree; they do not work.  But I am talking about adult stem cells.”  She repeated her statement.  So asked if she knew of any clinical trials being done with adult stem cells for CF.  She said she was not aware of any.  So I then said, “As a person of science, the best you can say, then, is that you do not know if they work.  You would need to see trial results to know if they work or not.”  She almost threw a tantrum, turned away from me, and quit talking to me.  I am now labeled as non-compliant at that CF clinic.

I had to leave Nashville for my own health.  The CF doctors ran out of options for me in 2011.  Nothing was working. I had only a few months to live, so I had nothing to lose by trying the adult stem cells.  And now 3 years later, I am much better and able to tell about it. My CF doc in South FL will have adult conversations with me about the stem cells. He is great.  He still does not believe the stem cells do anything, but he does not threaten me.  So be careful about talking to your CF doctors about this.  Without actually knowing anything about it, they are very opinionated about it.  They think they are factual, but they make statements without any facts or evidence.  They are trained to identify symptoms, and prescribe drugs to treat the symptoms.  They are really not trained to heal anything. But that is another train of thought.

You can learn more about Dr. Grekos, and the company he started for the stem cell research and treatments: www.Regenocyte.com.

If you have any other questions, you can write me at angelo@AngeloDiStefano.com and I will update this posts from time to time to reflect the answers to those questions.

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