Tag Archives: alternative therapies

Getting MS Stem Cells Internationally for MS Damage Repair

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                                         Dr. Louis Cona and Debbie Petrina

I did it! And would do it again.

After much research and living with this beastly disease for 39 years, I found the opportunity I had been waiting for and took it.  I am 64 years old, in perfect health, and probably would not see anything like this available in the United States for the rest of my life. And, it was not expensive relative to anything else out there for treatment that suited me.

I never took a disease modifying therapy/pain pill, practiced wellness (diet, sleep, exercise…) and am a paraplegic; though looking at my fit 105 lb. frame you would never think I had MS, or the other 10+ symptoms I have had to manage.

Where?

I went to DVC stem (https://www.dvcstem.com/ ) in the Cayman Islands, which stands for the Da Vinci Centre.  Though existing for over ten years, the clinical trial for MSers began only about one and a half years ago.  No, it is not considered a cure, but the purpose is to repair damage caused by MS and regain function. What makes them so special?

  • It is a pioneer and practice by Medical Director Dr. Louis A. Cona, a licensed physician and surgeon, who did transplants and general medicine for forty years. He has a General Medical Office on Grand Cayman in addition to the Da Vinci Centre.
  • They are one of the most highly regulated clinics in North America offering this type of expanded cellular treatment. fully licensed and inspected by the government of the Cayman Islands. As a British Overseas Territory, healthcare regulations are extremely strict, on par with the US, UK, and EU. The entire medical staff is fully registered and licensed, and the stem cell protocols are IRB reviewed and approved by a board in the United States.
  • DVC Stem is partnered with Vitro Biopharma, an award-winning medical laboratory located in Golden, Colorado, which is fully FDA registered. Cells are only sourced from American Association of Tissue Bank (AATB) certified suppliers of full term, ethically US donated human umbilical cords. The selection of these donated tissues is extremely regulated and strict. All of these cells are expanded using safe and standard protocols and are then flown overnight in sub-zero containers directly to the clinic for immediate treatment. To ensure maximum treatment effectiveness, the cells are expanded to as much as 300 million cells before being administered.  http://www.vitrobiopharma.com. There is no other country that has these standards.
  • DVC Stem uses cord tissue-derived mesenchymal stem cells sourced from US-donated, full term human umbilical cords. While other common sources of stem cells are fat tissue or bone marrow taken from the patient directly, there are many benefits to using cord tissue. Cord tissue-derived cells are essentially “new”, in their most primal state, free from the effects of aging or disease. Additionally, they are minimally invasive to the patient, without the need for any extractions, free from immune rejection, and have zero risk of transferring viruses or other communicable diseases.

The Procedure

  • Treatment consists of a two-day period including a 3-hr. IV transplant of 300M cord tissue-derived stem cells, as well as a variety of therapies designed to aid stem cell activation and potency (chiro, physiotherapy, acupuncture, lymphatic massage, etc).  I was delighted—no chemo, immune-system wipeouts, hospital stays!!!
  • To apply for the treatment, a phone consultation with Dr. Cona is arranged to discuss your specific case and candidacy for treatment in depth. He is very selective in approving potential patients.
  • After the consultation and acceptance by Dr. Cona, I was given two packets of information to be completed by me and my doctor, as well as a two-page list of current tests, labs, doctor visits, vitals… that needed to be performed. The purpose is to rule out any diseases, infections, illnesses etc. to prevent diverting the cells from repairing something else and not MS damage.  (It was maddening, but I thought it made so much sense.)
  • I researched everything I could think of, and personally talked with others who had actually gone to DVC for cells.  About 150 MSers went there over the past year and a half. Not one person has had bad side effects, and all showed different types of improvement in different ways.

Of special note is my personal assessment/professionalism of all staff, the sterility and comfort of the clinic.  Dr. Cona was personally with me when he did the three-hour infusion in all his sterile garb, and we talked non-stop the entire time.  He wants to know his patients, and at discharge, he said that I or my physicians should feel free to call him anytime.  He has been courted by other countries (Panama, China, India) to partner with him for knowledge and profit, but has declined all of them. His only interest is his patients’ well-being, not profit.

After returning home, follow-ups or “markers” of MRI’s etc. are requested to determine progress at various intervals.

My Progress

I put a list together of all of my MS symptoms, and have kept a journal since May 29, 2019 that was my IV date.  It has only been two weeks, and by June 12th here are some specifics from my journal:

May 29, day of infusion
Very bad headache, dizziness, light-headedness, foggy throughout evening. Trouble sleeping.  Symptoms all gone the next morning.

June 2
Overall, feel good.  More endurance, ability, time doing aquatic water therapy (one hour).  Clear head.  Feel stronger despite rigorous pace of travel and unpacking, etc after trip.

June 7
Continued as above. Today, balance seems improving.  Took Grizzly on his entire walk this morning without having to hold on to an armrest.  Spasticity seems to show improvement.  Less tremors and tightness, especially in the morning when I get up. Was able to do 9 push-ups on wall in pool.  Could not do this before.

June 9
Did 10 pushups on wall in pool. No nap today—just a 45-minute lay-down– very busy all day.  (yesterday was a high-anxiety day/ 112-degree day).

June 11
Spasticity definitely improved:  longer stretches between baclofen pills (3 instead of 6 pills/day), easy to get catheter in, sometimes start to pee without catheter.  Balance getting better–washed hair with both hands and am able to do many things without needing to hold on with one hand for support.  Feeling stronger—did 12 pushups on side of pool. Seems easier to move legs around and up, though I still can’t do it on my own.  Only lower back pain now.   I can hold a pen more securely and write better. Bowels still messed up. (Note: this is happening on a day following 3 days of high anxiety/stress and excessive near the triple digits.)

June 12th
Today is a “pay day”.  I have been pushing too hard and the heat/anxiety was overwhelming.  I’m going to listen to my body and just rest and sleep.

To learn more about the DVC stem cell treatments, I recommend visiting https://www.dvcstem.com/.

Additionally, here is a link to an article put together on how stem cells are used to treat the symptoms of MS: https://www.dvcstem.com/articles/stem-cells-for-ms/, and an article about David Lyons, founder of the MS Fitness Challenge: https://www.dvcstem.com/articles/david-lyons-ms-fitness-challenge/. Being a member of David’s site enables persons to receive the stem treatment for $17,500. David went to Dr. Cona in Oct. 2018 with a leg that was dragging with a dropped foot.  He is now jogging!

Would I do it again? Absolutely! I had nothing to lose except my time and $22.5K for total fees and all travel expenses. It was safe with no side effects. At the date of this post, Pharmas offering treatments in the U.S. cost $50K-$70,000 annually for DMT’s (disease modifying therapies) for MS. They are only effective <50% of the time, have side effects, and require intensive follow-up that is exhausting. I was not desperate enough to consider the high risk of HSCT in U.S. clinical trials.

Stem Cell Update—January 20, 2022

Since my infusion, my neuropathy symptoms remain improved–less numbness, burning and stabbing sensations. Hand coordination, sensory and strength remain good e.g., can button buttons, grip a pen and write, feel objects in my purse, shuffle cards… (could not do any of these things for years prior to receiving the stem cells) Much less overall fatigue and more energy since the procedure. Cog functioning is very good except for forgetfulness, that is probably due to my age. No improvement in bowel/bladder functions, or ability to walk. Can stand, but only for long enough to pivot or do ten partial leg squats holding on with both hands. I have no doubt after all of this time that this stem cell procedure was successful for me.

Debbie Petrina
Author of Managing MS
MS Counselor/Living with MS 39 years.
http://debbiems.com/

 

 

 

 

 

 

How do you Manage MS?

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“Want some help?”

Everybody wants a cure for MS, to halt the progression of it, and restore the damage it causes to us. But what do you do in the meantime until those things happen?

You manage your MS effectively.

If you ask people with MS how they manage it, most would respond by saying what treatments/meds they are taking and then add that they may exercise, do yoga, etc.

While this is true, it’s only a small part of a big answer. Everything about MS is complicated: the diagnosis, the symptoms and relapses, treatments, health team support, relationships, the explanation…  ALL of these things have to be managed effectively in order to survive MS.

One who manages their MS effectively is also helping to control their symptoms, relapses and the course and thus progression of their case. Yes, let me repeat that– One who manages their MS effectively is also helping to control their symptoms, relapses and the course and thus progression of their case.

I know, and I know countless others who know. Beginning in 1980, I’ve lived with it for 34 years, and have been actively involved in the MS community for nearly thirty years. An ordinary person of moderate means, I went through motherhood, had a career I had to eventually give up, managed a household, and enjoyed life.

In a nutshell, these are the main objectives in managing MS:

1. Prevent sickness/infections, physical problems, and long-term chronic stress.
Why?  Because any of these will trigger a relapse. And relapses usually result in progression and nervous system damage.

2. Take care of  your body in all ways to be healthy.
This includes getting enough sleep, exercise, eating sensibly, managing stress, being mentally and emotionally happy, etc. This also includes things like weight watching, no smoking, etc.

Why?  Staying healthy keeps one’s resistance up to prevent getting sick (thus preventing relapses) as well as keeping symptoms from intensifying. In addition, maintaining wellness helps prevent your body from getting other serious problems like high blood pressure, diabetes, poor circulation…

3. Carefully choose and monitor your treatments.
While drugs are often helpful for treating symptoms, relapses and slowing progression of MS, there are downsides.  First, one must remember that all drugs have side effects that add stress and other impairments to the body. Second, MS is a life sentence; one may live decades until a cure is discovered to halt progression or restore damage. Every drug taken is passed though the liver and has other risks. There is not a treatment that exists today that totally halts progression, relapses, or improves symptoms.

4. Use a 2-prong approach when managing symptoms.
In addition to using medications, there are SO many ways that MS symptoms can be managed non-medicinally—pain, spasticity, bladder issues…  Often, using a combination of using medicinal and non-medicinal means together can be helpful as well. For example, I take baclofen and do stretching exercises daily to reduce my spasticity.

In addition, alternative non-medicinal therapies  have been successful like yoga, acupuncture, massage, pilates, etc. to help with symptoms.

Managing MS effectively requires a tremendous amount of knowledge and support. It’s hard, it takes time, requires change, but it works.  However, learning to managing MS is a daunting task because we know that no two MS cases are alike and the disease is so unpredictable. Furthermore, because there is so much information available from so many sources, one can become overwhelmed and confused.

Want some help?

My book “Managing MS: Straight Talk…” is now available on eBooks for only $2.99 . You can also check out my website below for oodles of info—articles/resources with links, videos, my MS blog of nearly seventy articles, my credentials… The information is accurate, easy to understand, and concise.

My personal mission is to help others dealing with MS, and these two tools—my book and my website—will definitely help you with something. There is nothing to lose, and I guarantee something to gain!

 

**Video:  “How to Manage MS: Two Tools”
https://www.youtube.com/watch?v=iliPH66JCaw

www.DebbieMS.com
Author/MS Counselor/Living with MS

Making Decisions when Managing MS

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In many online MS discussion groups, participants discuss what is the best thing to do or take for MS, and what is “bunk.” Subjects range from treatments, diet, and stress to exercise, experimental drugs and alternative medicine.

If one seeks information from MS organizations or medical websites, the standard directive is “ask your doctor.” But realistically, if you ask your doctor, most will recommend drugs. Drugs for symptoms, for relapses, and long-term DMD treatments. There are two reasons for this:

1. What else can they do for you in the fifteen minutes that they see you? They can’t cure you but they will want to make you feel better and try to prevent you from getting worse. In addition, doctors certainly don’t have the time to educate you or answer a lot of questions. They will refer you instead to physical/occupational therapy, pain clinics, etc.

2. Relative to prescribing drugs, doctors depend on the scientific evidence of these substances. They will send you off with scripts for tests initially and ongoing. Relative to body wellness for MS, while they would agree that exercise and proper diet is good for you, they will not specifically address these topics because there has not been enough scientific evidence done to determine their positive/negative impact on MS. So again, the patient is referred elsewhere.

Everyone’s body and MS are unique, and everyone responds differently to anything you take or do to your body. No two cases are alike in response to these actions just like no two cases of MS are alike. While some things work for some, often they don’t work for others.

So, when you need to make a decision regarding something about your MS and are stuck, what should you do?

Personally, I practice common-sense, logic, and balance for both my body’s wellness and medications I choose to use. I ask myself these questions:

• Does it make me feel better?

• What are the short/long term risks of doing or not doing something?

• Do the benefits outweigh the risks that I am willing to take?

• Am I doing everything I can possibly do to prevent infections, sickness, falls…?

• Did I gather enough research from reliable sources to help me make my decision?

There is no question that proper diet, exercise, sleep, stress management, weight control, etc. are essential for vital body functions and helping to manage/control MS. This is true for a person without MS, but especially important for a MS patient to help managing/controlling their disease.

I am open-minded and listen to others in online discussions as part of my personal research for making my own decisions about managing my MS. I dig through the internet for studies and statistics. And I consult with doctors and other health care professionals for their insights; but a health professional is not my only source of action or fact-finding, giving him/her a carte blanche.

Then I document and keep journals of what I do and what the effects are.

There are no absolute rights or wrongs. I know my body well, but I leave myself open to trying something new if I feel it is safe and I have nothing to lose by trying. Like everyone else with MS, I want to feel better and get better.

One rule I follow for myself with regard to making any decisions about anything: “When in doubt—don’t!” I can always revisit the situation later.

Ultimately, decisions are made by me. I only have one body and am the one who has to live with it.

www.DebbieMS.com
Author, MS Counselor, Living with MS

Massage Therapy: Guest Post

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“Beneficial for Many Conditions”

July 27, 2012

I was approached by Melanie L. Bowen requesting me to consider a guest post for my blog. After reading the article about the benefits of using massage therapy during cancer treatment, I agreed.

When reading her article that follows, you can substitute “MS” every time the word “cancer” is used. Massage is an excellent therapy for persons with MS, giving relief for both body and soul. And this would be true for other chronic illnesses/conditions as well.

Using Massage Therapy During Cancer Treatment

Massage therapy is a growing career field, as most people love to indulge in a good massage. Those who become massage therapists usually do so in order to help people relax. What can be especially satisfying for the therapist is the knowledge that he or she is making a real difference in the life of someone who particularly needs extra special care. That person could be aged or suffering from an injury, from stress or from a chronic illness, such as cancer.

There are many complimentary therapies that can be used alongside traditional cancer treatments. Most doctors now support the use of massage therapy to ease the physical discomfort, anxiety and fatigue that often accompanies having cancer. Depending upon the type of treatment chosen and the stage of disease advancement, the physical effects may be severe.

For example, when a person is suffering from mesothelioma, the pain and stress can be quite overwhelming. Massage gives you the opportunity to help alleviate the emotional distress and physical pain often experienced with this diagnosis.

The benefits provided are numerous. Massage therapy during cancer treatment is considered an integrative intervention. Through skilled hands, you can:

• Increase the flow of blood and lymphatic fluid, helping the body to flush itself
• Ease muscle pain from spasms and built up tension and toxins
• Augment the effects of pain medication while stimulating the release of endorphins
• Decrease inflammation, edema and swelling

There are some precautions to follow while getting a massage while treating cancer. Soft tissue areas should be avoided like:

• The tumor site
• An open wound, a tear or an area of skin breakdown
• A radiation site
• An area effected with redness, pain, swelling and warmth

Current medical and professional studies now demonstrate the efficacy of massage therapy in assisting those with cancer in managing their pain, anxiety, fatigue and depression. Sadly, cancer is increasing and many of those diagnosed are going to look for complementary and alternative medical therapies and integrative interventions.

Keep in mind that there are very minor risks involved in using massage therapy during cancer treatment as long as a physician has given the green light. Massage therapy used during this time in a client’s life can truly make a difference in his or her physical comfort and mental state. Without a doubt, this is one of the most rewarding experiences that you can have.

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For MS patients receiving injections for DMA’s, the same precautions should be followed for soft tissue areas.

I was curious after reading Melanie’s article about insurance coverage for massage therapy for MS and did some research. Medicare said they will cover 80% of the cost, as long as the massage is done by a licensed massage therapist who is employed by a physical therapy facility/center. My insurance carrier, Highmark Blue Cross/Blue Shield, will cover 100% under the same requirement! BC/BS told me this is something they just started in 2011.

So it is worth inquiring about massage therapy with your private carrier. After all these years, it is finally getting the recognition and support it deserves from both doctors and insurance companies.

For those of us with MS, massage is not just a luxury for sore muscles, pain and spasms. It is a necessity, and certainly worth pursuing.

Thank you Melanie, for your contribution and efforts!

www.DebbieMS.com

Feet Care, Massage & Reflexology

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“Sole & Soul Therapy”

July 16, 2012

It’s time for a pedicure. I like pretty toes and feet. But I love the therapeutic benefits I get from getting a pedicure.

I never had a pedicure when I lived in Pittsburgh. Shoes were always worn and I thought getting my toes painted was frivolous. Then I moved to Arizona, where the state shoe is a flip flop. That’s lucky for me since I don’t have to wrestle putting on socks and shoes too often. It’s not an easy task for someone who has stiff hands and spastic legs.

Bare feet, also a standard here, also has its benefits besides not having to struggle with footwear. It’s cooler and more comfortable, especially when my feet swell from sitting too long. I can grip the floor better when I stand or take a step or two.

Arizona is a very casual-dressing state; the oppressive desert heat in the summer probably has much to do with it. Yet, most girls and women have their feet all gussied up with color and design—even the sloppiest-looking people.

I like looking nice. Maybe that comes from my upbringing, or Eastern roots. It makes me feel good. I like to match my outfits with my earrings, purse, and footwear when I go out, even if it’s to a grocery store. Finding comfortable and stylish footwear had always been a challenge to me ever since I started having walking problems. It was great when I didn’t have to buy matching footwear anymore, but I still had to have nice-looking feet.

So it didn’t take me long after I settled in to my new home to go to a salon and get a pedicure. That’s when I discovered that a pedicure provides more besides just pretty toes. The therapeutic benefits are enormous.

For me, who has advanced MS, cutting my own toenails and polishing them is quite a challenge. I felt like Dorothy in the Emerald City that first day sitting in a massaging chair, as I watched the gal carefully scrub the bottom of my feet. It was embarrassing that my big toes were stiff like two soldiers when she got started, but she told me to just sit back and relax.

And wow, did I ever! As she cleaned and clipped, I became immersed in the chatter going on in the shop. It was fun looking at what everyone else was choosing to do with their nails—the colors, designs, and sparkles. It was a great escape and mood elevator. Where have I been all these years?

After the girl cleaned up my feet and nails, she asked if I wanted extra massage for my feet. I giggled and said “Go for it!” That is when my eyes really opened wide. I couldn’t believe how good it felt as she skillfully massaged ever toe, every part of my foot, ankles and shins. My stiff, soldier-toes were gone, my feet were aligned perfectly–not inward–and my whole body was relaxed and rejuvenated.

What was going on? Where did my back, feet and shoulder pain go? I knew how beneficial a regular body massage was for my sore neck, shoulder and back muscles, but I never expected in a million years what a foot massage would do for me.

I started researching on the internet and found out that I wasn’t getting just a foot massage; I was actually getting reflexology. I was (and still am) going to a Vietnamese-run shop where the girls were trained to do this. I just didn’t know it because of the language gap—they speak very little English.

The foot has more than 7,200 nerve endings that connect to specific organs, according to the Reflexology Association of America. The top of the foot corresponds to the chest, the Achilles corresponds to the side of the hip, and the big toe links to the brain. Massage and reflexology techniques bring comfort and restore proper nerve flow. Hm– is this the reason why my big toes weren’t standing at attention anymore?

It is a form of alternative medicine. It doesn’t reduce my need for baclofen that I take for spasticity, but it definitely helps my spasticity and is a complementary approach for my bothersome MS symptoms.

I wish I could get a pedicure every week, but our budget won’t allow it. And unfortunately, other forms of alternative medicine such as massage, acupuncture, or yoga are not covered by insurance. But I consider it enough of a necessity to get one (with massage/reflexology) once a month. Fortunately, the shop where I go only charges $25 (plus tip). And gift certificates for birthdays and Christmas are always appreciated.

Relaxation, good company, energized well-being, less pain and pretty toes–all for $25-30 and an hour of time. I think it is a great bang for the buck.

P.S. I should mention that although the shop is filled mostly with women, it’s not unusual to see a guy or two in there as well :).

www.DebbieMS.com