Over the years I have corresponded with some of you, spoken with or been introduced personally. I have not posted a blog about my personnel health or treatment since August of 2010. I have however chosen to do so at this time. Some of you have spoken to me about my blog subject entitled "My Personnel Journey to Health".
I am a 49 year old MS patient who, after 12 years of diagnosis, progressed (I believe) from the relapsing/remitting type of MS to the secondary progressive phase of the disease in 2010. Desperate for relief, or at least a disruption of my rapidly advancing disease, I twice had the jugular vein-widening ‘liberation therapy’ in 2010 in Poland, and again in 2011 in California. Although I had hopeful relief from some MS symptoms both times, the reprieve was only brief, and by early 2012, I found myself with advanced neurological signs including losing the ability to get up out of a chair and take single steps, or even twist off a jar lid.
My CCSVI/stem cell journey started when I first saw David Summers’ internet blog based on his experience with his treatment at CCSVI Clinic. Years before, I had taken an interest in stem cell therapy because of its potential to treat all manner of disease types including MS. David’s blog opened my mind to the possibility for my own treatment now that all other avenues of alternative therapies had been exhausted. I knew that the drugs I was taking could only modify my symptoms and what’s more, the side-effects of my prescribed medications were now only making me sicker.
I had done a fair bit of research on stem cell therapy over the years and due to potential dangers for the patient, I was not interested in receiving the cells from an unknown donor. In studies, these donated or ‘allogeneic’ stem cells have been seen to have potential risks including cancer. To me, this recalled the spectre of the inadequate blood screening procedures of the Red Cross in the 1990s which led to half of the world’s hemophiliacs being infected with the HIV virus. So after re-assessing my own symptoms, my rapid deterioration, and ultimate prognosis, I decided that I needed to know more. I knew that I would have no support from my neurologist, who for reasons of liability could make no professional recommendations as to an unproven therapy. I was on my own.
I called the CCSVI Clinic, where David had his therapies, in April of 2012 and was soon connected to Dr. Doug Broeska, an independent medical researcher following patients who had been treated with stem cells at the clinic for various neurological diseases. We had a lengthy conversation, with me asking many questions about the therapy. Importantly, I discovered that Dr D was a member of the International Cellular Medicine Society (ICMS) and that the clinic was following all ICMS guidelines including using only ‘autologous stem cells’. Great! If I got this treatment, I would only be receiving my own DNA. After that first call I had lots to think about. I decided that I needed to know more, and who better to connect with than the patients themselves? I exchanged emails with David Summers and spoke directly with another patient, Bill about his recent immediate positive results after his therapies at the clinic. I discovered that months later, both were continuing to improve.
A month later I spoke to Dr. Doug again at great length about the treatment along with some hockey small talk thrown in for good measure! After that call I made the decision to be proactive and become my own advocate…following the good advice of my namesake Stephen King, who said…’either get busy living, or get busy dying! With no other options available other than to sit around deteriorating while this insidious disease ravaged my body and brain, I decided to make my personnel choice to get it done.
Some more background is appropriate here. As I mentioned I was diagnosed twelve years ago and my treatment resumé reads: betaseron, mitozantrone, ‘chemotherapy’ steroids, copaxone, minocycline, LDN, ampyra, five years on Ashton Emery’s Best Bet Diet (I still follow some of his strategies today), baclofen, vitamins/mineral regimes and my two previous failed CCSVI angioplasty procedures mentioned earlier. No other intervention, not the liberation therapies, and especially not the drugs, I was just deteriorating.
Unfortunately we now know that the CCSVI angioplasty treatment alone only produces long-term benefits for a small percentage of patients. I reference the learned “Wheel Chair Kamikaze”, a well-known and respected blogger on various MS social media sites and his blog, Some Words of Caution. Currently, with CCSVI angioplasty alone, other than using stents, which are NOT recommended, there is no way to prevent the restenosis from taking place. There is also no way of knowing when, or if restenosis will occur. You’re taking your chances, and even worse, there’s now a growing population of MS patients with permanently blocked neck veins as a result of injury due to overtreatment damage to the inner lumen of the neck veins.
I received my therapies in August of 2012 at CCSVI Clinic…the Combination Therapy protocol. So called because of the different ways that the stem cells are used, firstly to strengthen the veins at the point of the balloon expansion, and then to repair damage to the central nervous system; intravenous and intrathecal infusions. Surprisingly, at the time of my angioplasty at the clinic only my left jugular had restenosed; previously both veins had occluded after my first surgery. My initial improvements were not as dramatic as some like Deb O’Connell; MS as a disease typically affects every patient in a different way due to quite random damage within the brain and throughout the central nervous system. I’m not so bold as to make the statement ‘MS was my previous diagnosis,’ nor do I have any before, after, or during videos to post on youtube. But I Do know I left something awful behind at CCSVI Clinic in India and brought home a gift to my family.
I have discussed my ongoing positive changes with people from all over the world interested in seeking this treatment. Now, I freely admit that I’m no expert in MS…just an expert in my MS. I have never actually been labeled RR, SP, PP, whatever. If anything, I would have coined mine as ‘hopeless’. I had never even been given an EDSS score before I went to India. To me, my disease is what it was that day, minute, or second. But during my pre-op examination at the clinic the neurologist said that I was ‘almost a paraplegic…7.5 EDSS.’ Boy…did that hit home loud and clear.
So here goes…my progress, post-stem cell transplants to date: I could do none of these things before my stem cell therapies…I can now take a few small steps with my walker, stand with assistance for up to 20-30 minutes twice a day and perform upwards of 100 knee bends. I struggled with urinary retention and bowel problems post treatment. Today I’m happy to say I have no more incontinence after twelve years and my constipation is finally settling, almost no spasticity, reduced hypertension in my legs, significant reduction in leg tremors and fatigue episodes, higher energy levels too; I can perform my physio exercises up to 1-1-½ hours per day, the tone/colour has returned back in my body, the warmth is also back; the feeling is back in my limbs, and my back side gets sore now from sitting in an uncomfortable chair! I am feeling …living all of these improvements and more…while my body is trying to normalize… and best of all…no signs of regression!
It’s been a long time since I was whole. The improvements I am feeling were once qualities of my life that were gradually, inescapably, and unfairly stripped away from me, now slowly returning. Some of these benefits in MS patients might be attributed to the successful treatment of CCSVI? I do, however believe that I’m also experiencing the repair and regeneration of neurogenic pathways and that the stem cell repairs of my veins are also keeping them open just as the stents would. I still require my wheel chair for now!
The treatment I received at the CCSVI Clinic and the follow-up I continue to receive from Regenetek Research was, and is first class. In November, I along with some other of the local BC patients who were treated, had the pleasure and privilege of in-home follow-up visits from Dr Doug and one of his associate physicians, Dr. Susan of Regenetek Research. I understand that they have also travelled to other places around the world to evaluate patients. By comparison, Ameds lost any interest after I informed them I would not be returning to Poland for a follow-up appointment and Synergy in California had no interest to begin with. Sure it all costs money, and the lucky ones amongst us can afford it. But one thing is for sure. Even millions of dollars can not buy your way out of MS. The time and financial commitment I made to my previous two CCSVI angioplasty surgeries adds up to roughly about the same as my Combination Therapy at CCSVI Clinic.
I have absolutely no regrets even though my progress is a bit slow. On the contrary; it took me 15 years to get to my August 11th 2012 pre-treatment state of health. Over that time I had deteriorated to become a paraplegic. There were MS lesions throughout my central nervous system, atrophied muscles, contractured tissue, and disconnected neural pathways. Even if the disease seems no longer actively progressing, I can hardly expect to get better in 8 months!
I still have days where my symptoms come and go but through it all I have not shown any signs of real regression! And no one is claiming that this treatment is a cure; I simply know that my own personnel benefits from having angioplasty due to CCSVI did not maintain. When I compare those two therapies with the benefits I am now experiencing from the CCSVI Clinic Combination Therapy, the difference is a stark contrast. Put another way, so far the stem cell therapy seems to have worked, the venoplasties alone did not. I feel I am fortunate to have received a therapeutic treatment with no side-effects, no need to take future medications and one that continues to offer me hope, not just of modifying symptoms and turning me into drug junkie, but for a full recovery. Most importantly, I feel as though for the first time I can somewhat control my MS instead of it completely controlling me.This is such a paradigm change!
I wish good luck and continued positive results to all my fellow patients who have been treated through the clinic. I now personally know of twelve patients who have received this treatment safely and all continue to show positive, ongoing recoveries. I usually speak with at least one new prospective patient every other day seeking information on this treatment. The patients treated are real heroes for demonstrating the success of the therapies and taking the fight to the rest of the MS world, not just waiting for this treatment to come to a town near you anytime soon. With the FDA now recently calling stem cells ‘drugs’, there is a much more complicated legal battle shaping up in the US with protracted timelines. Untangling the mess will take years while the research lags. This is time people like me don’t have. Fortunately there are options and other countries not under the thumb of the drug companies. This is why Dr. Doug has taken his Combination Therapy protocol ‘offshore’ to be studied. In my book a hero too.
So I also wish to thank everyone on any of the MS social media sites who are advocating for sufferers. Thanks to all the researchers and clinicians involved at CCSVI Clinic, Regenetek and elsewhere who are making this treatment an option for patients like me; heroes all. It’s not always about the people in the forefront; I know that there are lots of people working behind the scenes to continue to improve the cell lines and the medical techniques as they move the science forward to prove their hypothesis and allow this therapy to be eventually accepted by our medical system. Finally and ironically, maybe I should be thanking my own body, as diseased as it was, for providing me with just enough healthy stem cells that all by themselves have more knowledge contained within their cellular matrix than any doctor on earth. By themselves, they seem to know exactly where to go to stop the disease and exactly what to fix for me to be feeling my new state of health!