Tuesday, March 10, 2009

Here We Go!

March 11, 2009:

Welcome to my stem cell treatment blog. I will try to keep the blog updated as often as possible. You may leave comments here or email me at russkleve@verizon.net.

I want to thank especially Kelly Clark and Mark O’Donnell for helping to make this a reality. I could not ask for two finer people in my life. They are fine attorneys, employers, and friends who have supported in so many ways for the past 16+ years! And of course the awesome staff at the law firm of O’Donnell Clark & Crew LLP - I love you guys!!

I also want to thank the person who put me on the road to China. A fellow-FSHD patient from Australia I met a decade ago on an online web board, Claire Anderson. Claire is an amazing woman who has fought the good fight and found the words to express it in her book entitled: Invisible Opponent (www.zeus-publications.com/invisible_opponent.htm). Claire completed an India stem cell treatment program in late-2008, and it she who became my inspiration last September.

Why I’m Here:
I, along with my mother, twin sister, one older and one younger brothers, were all born with Facioscapulohumeral muscular dystrophy ("FSHD" for short). The major symptom of FSHD is the progressive weakening and loss of skeletal muscles. The usual location of these weaknesses at onset is the origin of the name: face (facio), shoulder girdle (scapulo) and upper arms (humeral). Early weaknesses of the muscles of the eye (open and close) and mouth (smile, pucker, whistle) are distinctive for FSHD.

Unlike my siblings, my disability did not really begin to effect me until my late-20’s when my left foot began to turn inward causing me to trip. This is known as foot-drop. Prior to this I was an avid bicyclist, cranking out 50-100 miles a week, rain or shine. However, by the time I was 30 I had traded my touring bike for a stationary bike; by 35 even that was difficult to pedal; by 40 I had given it up altogether. Now, at 48, as can be seen in the video (see below), life’s simple movements are a struggle, although I consider myself extremely lucky when I think about my own family members and what they must deal with every day.

I dedicate this journey to my brother, Scott, severely affected by FSHD in his childhood who passed away in 1995, too young at 38; to my mother who left us in 2002 at the age of 72; my sister Teresa, and my brother Craig, everyone who lives with this disability and those who support and love them.

From the FSH Society’s Webpage (http://www.fshsociety.org/)
It is known that FSHD has been around for five centuries in some families and was first described medically in 1885, but natural history and progression studies are now just beginning. FSHD is the second most prevalent muscular dystrophy affecting adults and the third most prevalent muscular dystrophy of men, women and children. FSHD is one of the nine primary types of muscular dystrophy. Muscular dystrophy in general connotes a genetic, hereditary muscle disease that causes progressive muscle weakness. FSHD is also broadly characterized as a neuromuscular disease (NMD), as muscular dystrophy is a subset of NMD. Muscular dystrophies are alike in that they cause progressive skeletal muscle weakness, defects in the biochemical, physical and structural components of muscle, and the death of muscle cells and tissue. However, researchers believe that the causes of each of the muscular dystrophies are not necessarily the same. In most cases, FSHD muscle involvement starts in the face and slowly progresses to the shoulder and upper arm muscles and then down to the abdominal and foot extensor muscles. Foot drop and foot weakness are early manifestations. Initial signs of FSHD include difficulty reaching above the shoulder level, foot drop, scapular winging and facial weakness. Weakness in the abdominal muscles can cause a protuberant abdomen and lumbar lordosis. The lower abdominal muscles are usually weaker than the upper abdominal muscles. This distribution of weakness is not seen in many other diseases and, therefore, is very specific to FSHD. Although the progression of FSHD is quite variable, it is usually relatively slow. With FSHD, most affected people develop unbalanced (side-to-side) weaknesses. The reason for this asymmetry is unknown. Although not typical, some patients with FSHD have respiratory insufficiency, especially those with severe FSHD.

See how it currently affects me in the videos below.

Nuts & Bolts:
Beikie Bio-Tech (http://www.beikebiotech.com/) is the company I decided on after months of research which included safety, percentage of positive results, number and type of stem cells used, price, length of stay, etc. I get a lot of questions about this, so I put a FAQ section below.

Treatment Protocol: The stem cells are derived from a single umbilical cord provided by a full-term, live birth, Chinese baby (local is fresher!). My specific program will include six injections (10-15 million stem cells each) into my lower spine, as well as a bone marrow treatment which requires the insertion of a long needle into my hip. The marrow is extracted, cultivated and a nerve growth factor is added. Nerve growth factor is taken from the cord serum, and its purpose is to encourage the growth and repair of neurons as well as enhancing the potential of the umbilical stem cells. The bone marrow is then reinjected via the lumbar. But wait, there’s more poking! I’ll be hooked up to an IV drip containing stem cells, and site injections of stem cells into specific muscle groups will also be part of the treatment. I understand that six days a week I’ll be going to some sort of physical therapy, physiotherapy, acupuncture and massage, along with traditional Chinese herbal therapy.

To view blogs from other Beike Bio-Tech patients see: http://www.stemcellschina.com/

Frequently Asked Questions What is a Stem Cell? A stem cell is a cell that can renew itself and become other types of cells in the body. This ability to change into other types of tissue is known as "plasticity".

Umbilical Cord Stem Cells:
We utilize Umbilical Cord Stem Cells known as CD34+, CD133 and Mesenchymal stem cells. CD34+ and CD133 have been shown in numerous studies to be prone towards becoming white matter which is what neural cells and myelin are made of. Mesenchymals have been found to be inclined to be become numerous types of cells including but not limited to chondrocytes (a type of cell critical to tissue renewal particularly cartilage), liver cells, Kidney and neurons. Lab tests have also indicated that when Mesenchymal stem cells are combined with other cells such as CD34+ and CD133 they will boost the process of the transformation of other types of stem cells into becoming what they already have a tendency for such as white matter. These Mesenchymals also appear to be able to conduct repairs in relation to vascular disorders within the brain, ocular areas and throughout the body including but not limited to the heart, kidney and pancreas.

Are stem cell transplants from cord blood safe?
Yes, in fact doctors have been using these types of stem cells for over 40 years. The National institute of Health (NIH) has stated that they have seen no cases of cancer or other health issues in relation to this type of transplant.

How soon will I see results?
Some patients have noticed improvement within 24 hours. Since this is too soon for the cells to have engrafted we believe these immediate results occur from the Neural Growth Factors used during the transplant process.

What are the side effects of a SCT?
The side effects are very minimal. Most common is a slight elevation in temperature lasting 12 to 24 hours. Some patients also experience mild to moderate headaches. Many recipients also experience some level of fatigue for a day or two.

What is the FDA’s position on Umbilical Cord Blood Stem Cells?
The FDA has approved the use of these cells for over 80 conditions. Unfortunately approval for many illnesses and conditions has been slow to come which is why so many are opting to go outside the US for treatment.

Can you please explain what is the Nerve Growth factor and the importance of this in Stem Cell Therapy?
Nerve growth factors in regards to those used in China are taken from the cord serum and encourage the growth and repair of neurons as well as enhancing the potential of the umbilical stem cells which are infused.

Do cord blood cells need to be DNA matched and embryonic/fetal stem cells not?
It is a misconception that embryonic and fetal cells do not have a fingerprint and can change into any type of cell while umbilical stem cells do have fingerprints and can not transform. It is incorrect to say that this leads to rejection issues with umbilical stem cells as it does not. As for references made to such things as "DNA" and/or "fingerprints" neither really applies to either type in their true and pure forms. It isn't DNA variations per se, but surface antigens, often referred to as "markers", that signal "self" from "other". "Self" being the bodies own matter and "other" being a foreign substance. The consensus of studies published in scientific literature is that human umbilical cord stem cells (hUCSCs) provoke little in the way of adverse reactions due to antigenic recognition by the recipient. Meaning that because they lack markers and the body sees them as "self". This is why anti-rejection medication is not needed when doing a SCT with hUCSCs in the manner that is done by Beike.

How do you make sure that the stem cells you are using are a match for the patient and will not be rejected?
Umbilical Cord Stem Cells, aka UCSC’s, do not require matching. In the life span of a stem cell umbilical cord derived stem cells are considered to be the youngest or least mature of all the stem cell types. These UCSC's (Umbilical Cord Stem Cells) simply lack the exterior surface antigens (protein markers) which would indicate to the hosts body that the cell is "other" thus the recipients immune system sees it as "self". Upon being transfused into the body the UCSC’s will of course be noted by the hosts immune system which will respond by releasing white blood cells, aka WBC’s, in effect sending these white blood cells out into the body to do a search for foreign substances. Upon encountering the stem cells the white blood cell (WBC) will literally bounce around the exterior of the stem cell checking it for very specific proteins which are attached to the cell’s exterior cell body. These proteins are considered a type of antigen marker. When the WBC can not locate the "foreign" antigen markers it reads the new stem cell as "self". This allows the host’s body to receive the Umbilical Cord Stem Cells with no fear of rejection and thus no matching is required and "rejection" is not an issue.

Since the stem cells are still an implant could not any implant be rejected?
Technically we are not "implanting" the stem cells. We have two delivery methods; one is an "infusion" of the cells, growth factors and cord serum into the blood stream and the other is an "injection" of the cells and growth factors into the spinal canal where they then mix with the SCF (Cerebral Spinal Fluid).* We do not infuse or inject any Red Blood Cells.

What creates rejection by the host body is the reaction between the host’s immune system and a foreign substance?
When any foreign substance is placed into the body our immune systems are activated by a slight elevation in body temperature. Once activated the body alerts a very specific type of white blood cell (WBC). This type of cell will seek out the newly introduced stem cells. Its job is to determine weather the stem cell is a foreign substance. This determination process is commonly referred to as determining "self" from "other’. The WBC’s will literally bounce around the exterior surface of the stem cell. It is physically checking it for very specific protein markers known as "antigens". These proteins located on the surface of the cell are like a secrete code and if the WBC does not see the right code it will determine the stem cell to be "self" and thus leave it alone to go about its business. Umbilical Cord Stem Cells lack the antigens that would identify them to the WBC as a foreign cell or as being "other". The body’s immune system sees them as being "self" and no rejection occurs.

Is it true that umbilical cord derived stem cells have a genetic finger print and this leads to rejection issues?
No, this is not true. References made to "DNA" and/or "fingerprints" does not apply to this type of stem cell. It isn't DNA variations per se, but surface antigens, often referred to as "markers", that signal "self" from "other". "Self" being the bodies own matter and "other" being a foreign substance. The consensus of studies published in scientific literature is that human umbilical cord stem cells (hUCSCs) provoke little in the way of adverse reactions due to antigenic recognition by the recipient. Meaning that they lack markers and the body sees them as "self". This is why anti-rejection medication is not needed when doing a SCT with hUCSCs.

Grafting vs. Host Disease (GVHD) GVHD is one of the most common and life threatening side effects of a stem cell/bone marrow transplant. GVHD occurs when the transplanted stem cells recognize the recipient's body as foreign, and "reject" it. Cord blood transplants have had a noticeable lack of GVHD because the stem cells from the donor do not need to match the recipient as with bone marrow.


  1. Thank you, Russ, for putting up this blog, and for going through the stem cell treatment. I put this blog in My Favorites so I can read and follow you through it. I was especially iterested in your 3 little video's of you walking, getting up from a chair, and sitting down. I sure do see mtself, at least in the walking one. I'm going to have my daughter get video's of me like yours. Good luck, and Godspeed!
    Jeri in MN

  2. likewise i will also be following this. i see parallels in every video from my own body. i wish you the best, and look forward to seeing what the treatment can do for you.

  3. Frank from The NetherlandsMarch 14, 2009 at 4:28 AM

    Good luck Russ! And thank you for making this blog. I have fshd too so will be following your progress with great interest. All the best

  4. Hey, Russ--we have all fingers and toes crossed for you and will be thinking of you and wishing you the best as you go through the treatment. Hope the trip wasn't too exhausting!

    Kerry, Terry and Zelly

  5. You are really doing a great job, I am really happy to have you in my bookmarks list.
    Foot massager

  6. Russ,
    Thank you for sharing your journey. I hope you know how much you are helping people with FSH. I have a great friend with the same diagnosis and I trying to learn all I can, in hopes that he lets me be with him on his journey. I will continue to follow you and keep you and everyone fighting this disease close to my heart and in prayer. Just keep fighting, one day at a time!