October update from Barbara

[barbara]

I have had a request to update and clarify my treatments to date.

The first treatment I had back in April of 2007 was a disaster. I became very ill after my treatment at the hands of Casey Nabavi. His company, Cellulogix International, is red flagged on this forum as they refuse to give any information on purity of their umbilical cord stem cells used in many of their treatments. I believe I got contaminated cells or that the hospital where the treatment took place may not have had a sterile environment. Having collapsed immediately upon infusion, however, there was definitely a problem with whatever I was given. Scary for someone who was one of the first people ever to have had stem cell treatment for COPD. Back in 2007, not that much was available as far as real patient information, so I was just a babe in the woods, ripe for Nabavi's get rich quick scheme.

My next treatment was thanks to Dr. Steenblock. Someone had complained to him that he didn't think COPD was a serious disease. He contacted me and said that wasn't true, but he had never treated it. He asked if I could round up 6 people and at a much reduced cost, try a bone marrow autologous treatment. Several of us on this forum had treatment with him. I had two treatments because I felt like they were making my whole body feel better. He also helped me with a rheumatoid arthritis factor he found that my own doctors had missed. I do not believe that my lungs got much benefit, but many other parts of me did. I had a large bruise on my leg when I went for one of the treatments. The day after treatment, it was gone. That made me very aware of how powerful our own stem cells can be.

Jeannine, who is co-founder of this forum and my original stem cell mate, wanted to go to Dr. Steenblock, but living on the east coast, it was too far for her to make a trip, especially in winter. I suggested we try a treatment with Dr. Feinerman in Florida, so we made plans to meet there, along with member mysty119 last February. Unfortunately, Jeannine became very ill prior to the trip and was unable to go. I got a peripheral blood treatment from Dr. Feinerman and a few added things. Both Dr. Feinerman and Dr. Steenblock are limited as to what they can do in the U.S., however, their treatments in my opinion, do benefit the body as a whole and I felt good after all 3 of these treatments. I am still continuing with some innovative things that Dr. Feinerman has me testing, but until I complete the testing, I will have nothing to report. Dr. Feinerman is a long way from where I live so getting another treatment from him was not doable for me this year.

Last summer, I decided to try a catheter infused bone marrow and adipose stem cell treatment from Nepsis. I have no idea what the results will be and am not ready to report anything until I have something positive or negative to document. I do love their customer service and post treatment assistance. It is absolutely outstanding, but the jury is still out on whether treatment will benefit me. I was their very first COPD patient and therefore my experience will help them refine and build on their treatment. They are already planning to add placental cells to the mix.

I believe that all of the doctors that have treated me are excellent and caring. They don't just dismiss a patient and never care whether treatment worked or not. They are all working towards improving what they do.

I do have a situation living in high altitude that many with COPD do not share. It may actually interfere with my stem cell treatments which is disheartening.

I also take Stem Cell Advance and participate in the Stem Cell Advance treatment protocol. This is like a "mini" treatment on a daily basis.

I will update periodically when I feel that I have something important to add about my own condition. I continue to not decline which to me is a major improvement and I am not plagued with constant respiratory ailments like I was in the past.

[John Henry]

Barbara, thank you for that detailed update. It would be very helpful if others who have undergone these types of treatments would give everyone an understandable picture of what they have experienced, be it positive or negative. These procedures are so new that it is like looking down a dark tunnel, you don't know what is around the next bend.

[Jeannine]

I will tell people of my experience back in April 2007. I did get very sick but once I recovered I was able to go without oxygen during the day and I had hardly any shortness of breath. I went from being practically bedridden and unable to do anything other than go to work and come home to being able to go shopping, traveling and still keep working. My condition stayed this way from June 2007through January 2009 until I developed ulcerative colitis which made me very ill and hospitalized for 16 days and bedridden for an additional 4 weeks. Due to my weakened condition and the inability for me to take many supplements I caught a bad cold which developed into double pneumonia and I was hospitalized for 5 days this past July.

DO I regret the treatment? No. It really improved my condition and now that I have recovered from pneumonia, I am still feeling better than I did before treatment over 2 1/2 years ago, so it was worth it for me. Would I do it again knowing that I would be sick and hospitalized a week after treatment? If it were still the only option available (which it was at that time) I suppose I would.

PS: I believe taking the right supplements and medications as well as using the Power Lung have helped me as well. Last weekend I visited my sister who has three flights of stairs in her home. I was able to climb 28 steps without stopping - yes I was short of breath by the end. With my lung function of no more than 30% I thought it was quite an accomplishment.

[John Henry]

Jeannine, you indicate that in April of 2007 you incurred an experience. Could you please tell us what that was and where it took place. Did your 0/2 level increase because of it, if so by how much and what was it prior to your treatment? And during this period has that treatment made any advances? Thank you.

[Jeannine]

Jeannine, you indicate that in April of 2007 you incurred an experience. Could you please tell us what that was and where it took place. Did your 0/2 level increase because of it, if so by how much and what was it prior to your treatment? And during this period has that treatment made any advances? Thank you.

I will try to answer your questions

Exactly one week after treatment I started to feel like I had a cold and within 24 hours I was bedridden with the worst cold I'd ever had. Even with my O2 turned up to 5 lpm my saturation wouldn't rise above 91 and that was while lying in bed. Barb was experiencing the exact same symptoms. We both asked what did we do to ourselves. One week later I was hospitalized because of my breathing (some of this was caused by stress due to a personal matter I was going through and the illness was worse for me than Barb for that reason).

Prior to treatment I could not keep my O2 saturation above 92 without oxygen. After treatment, my O2 would stay between 95-96 for hours without oxygen and drop to the low 90s when I walked around without oxygen and as soon as I would sit it would bounce right back to 95-96 without oxygen. I would only use my oxygen when I would be doing lots of walking and for sleeping but didn't need it around the house or while at work. I did use it to go to and from my car because I wasn't brave enough to be caught without it but only need it set to 2 lpm for walking and sleeping.

I visited my inlaws in October 2006 and didn't see them again until August 2008. They couldn't believe how much better I looked and felt.

Today I am recovering from my ilnesses and have recently been able to go without my oxygen during the day for 30 minutes or so. My doctor told me it could take up to 6 months to recover my lung function but I am improving once again

There are many more details of these ordeals in our book. It's hard to recall them all after 2 1/2 years but I hope this helps you.

[barbara]

Jeannine did not collapse at infusion the way I did on the first treatment, but she did get sicker once we got home. I was seriously ill as well, but did not have to be hospitalized like she did.

I learned a valuable lesson after being treated the first time. I decided to start researching as much as I could. Jeannine does the same thing. I would never go anywhere again that put my life in jeopardy and I believe that it was. When I collapsed at infusion, I felt like I was being euthanized. It was a horrible moment that I will not forget. To top it off, Nabavi told me it was a natural thing and that lots of patients experienced the same thing. What utter nonsense, but I didn't know it at the time.

You all have choices now that we didn't have then. There are many good and caring doctors who are not sacrificing our safety for their own bank accounts. ICMS wants to go one step further with this and have a network of doctors that will follow safe guidelines. This will make it even easier for patients to weed out the bad from the good. Thankfully, with more choice, we won't ever need to answer the question of whether or not we would get treatment again like the first one we had.

I did not get the same benefits that Jeannine did either. It may have a lot to do with the high altitude I live in. At first, I felt good, but that wore off after a few months. I now know that a lot of growth factors administered with the treatment will give you that instant "I am better" feeling. Without the needed stem cells for actual regeneration and inflammation reduction however, the feeling fades. Supplementation has helped me as well.