Thursday, June 24, 2010

6 month report - I'm cured!

So I'm going to say it clearly right now. . . . .

The stem cell transplant worked and
I am cured of MS!

For clarification . . . . my definition of a "cure" has always consistently been the same: "A stopping or halting of the progression of my MS disease." And indeed, my MS has been stopped in its tracks. For any six month period of time during the five years prior to the stem cell transplant, my MS condition worsened and at no time did it ever improve. This is the first time for me that my condition did NOT worsen over a six month timeframe. And in fact, I have actually had some reversal (improvement) of disability / deficit of existing symptoms which is virtually unheard of once MS enters a (secondary) progressive phase such as mine and something I have never previously experiened. I expect to continue to actually improve (existing symptom reversal) in a significant manner going forward over several years thanks solely to this stem cell transplant procedure. As of now I have much less fatigue, a little (but definitely noticeable) less weakness, my gait (ataxia / balance) has improved, the perpetual 'resting' parasthesia I had in both of my lower legs for several years has completely gone away and I'm not sensitive to heat as I was before the transplant (it's wonderful to be able to now take a hot shower after years of only being able to tolerate lukewarm water!). And this is all while I have stopped all MS medication since November, 2009 (no more Avonex, or any other MS medication for me anymore). My body's immune system has been successfully "deprogrammed" and reset and no longer attacks my own body & nerve tissue, giving my body a chance to heal (or compensate for) the damage that has already been done. For me, a worsening of my MS condition is very likely never going to happen again thanks to the treatment which I am now officially calling a "cure."

A note about this cure. . . . . many, if not most people including myself additionally define a MS cure as " lifelong." And I suspect, expect and am confident that my stem cell transplant has resulted in a lifetime of cure for my MS (the mechanism of action of the very valid foundation science supports this conclusion). Unfortunately I can't prove this today with absolute 100% certainty because no one can predict the future with 100% accuracy, even though I consider it highly probable that this cure will last throughout the remainder of my life. The main reason I believe this cure will last a lifetime is because of the surrogate indication of loss of childhood-acquired immunity. People receiving a myeloablative stem cell transplant lose their disease immunity memory (including that acquired in childhood through illness exposure and vaccinations) which requires that people going through this procedure must be re-vaccinated for all the usual diseases (Polio, Tetanus, MMR, etc). This is a clear indicator that one's own body "forgets" how to mount an immune attack from memory. This also indicates that once the body's autoreactivity "forgets," it is rather unlikely that it will magically & spontaneously remember once again for no reason. This means that MS progression due to autoimmunity is no longer active, stopping the disease process. And also significant is that so far 100% of the people that have received stem cell transplantation with MS symptomatic improvement have also reported a sustained halting of their disease. . . . so far not a single person that has undergone a hematopoietic stem cell transplant has reported only a "temporary" halting of the progression of their MS (the phase I HSCT clinical trial patients have now exceeded a full decade of continuing disease remission). I have the faith and confidence that the improvement I have already seen & experienced will continue indefinitely. I would bet real money on it. It's a great confidence builder that all the people that have had this procedure in which it worked successfully have all reported indefinite duration of efficacy. I will continue to report my progress into the future.

And I know I said it a few times before, but I have to say it one more time because it is more of a blessing than I previously had ever imagined it would be. . . . . I love that I no longer have to inject interferon (standard immunomodulator drugs to treat MS don't stop the disease, they only "delay" the accumulation of physical deficit, most of which are required to be injected). Without a stem cell transplant I would have had to take medication for the rest of my life. But now that my MS disease activity has stopped I WON'T have to do it for the rest of my life. Never again. Even though I was somewhat used to jabbing needles into myself to administer the medication that I did for so many years, I would be lying if I said that I enjoyed it. So just this one aspect of being cured of MS has substantially contributed to the improvement & enjoyment of my life (not to mention a substantial savings of money no longer spent on medication!).

Although I have always been ambulatory (but limited in my walking distance), there's no question that prior to my stem cell transplant cure I was headed in the direction of eventually being in a wheelchair. Following the transplant I am now definitely heading in the opposite direction, distancing myself from ever being in need of a wheelchair and I am continuously increasing my walking distance. I'm happy to have the confidence that I have vanquished that monster-on-wheels for good. However, some people might take exception to the way I am defining a "cure." Some people might only accept a cure as defined by quick & substantial reversal of disease symptoms. And this is possible with some people with (RR)MS. For me I expect a continual (albeit slow) reversal of my already-existing (SP)MS symptoms and will continue to improve (deficit reversal) over time, probably for several more years to come. The main issue is that a stem cell transplant is more effective (or more rapid) of a cure if performed early in the disease cycle as soon as possible following initial diagnosis of MS as opposed to later when there is less probability of a dramatic quick & positive impact. So here is a video for me to explain on the topic of symptom reversal:

(The Blogger website is having problems uploading videos. So please see my video via the following Youtube link):

And by the way. . . I'm not the only person to be cured by this procedure. Many people with MS have been cured with a hematopoietic stem cell transplant (HSCT). An interesting video of a "typical" cure case using HSCT, along with some brief commentary from Dr. Richard Burt whom pioneered the treatment here in the US. Interesting that this patient (Barry Goudy) was diagnosed with MS the same time I was. It's just too bad that I waited years after him to have a HSCT. But I'm still happy that I did the transplant procedure:

And another (brief) video of Barry Goudy, successfully treated with hematopoietic adult stem cells for Multiple Sclerosis testifying at a United States congessional panel:

And another video (from Brian Tilaro) that reports on his (improved) MS status at just 4 months following his stem cell transplant. I have communicated with Brian and he continues to show symptomatic improvement to this day a couple years following his transplant. He describes his current status, in his own words. . . . . "It has been nearly two years since I was released [from the hospital]. My MS symptoms remain, but they are [only] the same symptoms I had prior to the [stem cell transplant] procedure. [The existing symptoms] have diminished gradually, but very significantly. My strength also slowly returned. I am now walking normally and can stay on my feet for hours without much pain. I no longer use a cane at all. I have not had a bad depression episode since July of 2008. Since my immune system was killed [and then reconstituted] by the procedure, I'm optimistically certain that I won't get any new relapses (No new lesions in my brain). The MRI's I have received since the procedure have shown no new or active lesions. :)"

And then in this video watch through the first patient with Lupus cured with a stem cell transplant and watch the second segment of the woman with MS that was cured with a stem cell transplant:

And a brief story a young man having had a stem cell transplant cure. As stated in the article "And today, Edwin's symptoms of MS have completely disappeared. 'I really don't feel like I have multiple sclerosis anymore,' he said.":;lst;1

Although no one from this diverse set of people would claim a stem cell transplant is easy, you'll notice the consistent message theme of each person treated with this procedure to cure their MS shown here, including me, is that they have no regrets from undergoing the procedure. It is also universal that everyone discontinues all disease-modifying MS medication following the procedure because the stem cell transplant stops further progresion of the disease and there is & will be no further added disability due to MS. And with knowing what they know now, no one shown here (including myself) would have done anything differently regarding this treatment. However, clearly there must be at least a few people somewhere in the world that are not happy with the procedure as a cure for MS because a stem cell transplant does not have 100% cure rate for MS. It's closer to an 85% cure rate, but still the best demonstrated cure that's out there! (Likely the people in which a stem cell transplantation failed to cure their MS had a very advanced (primary or secondary) progressive stage of the disease in which they were not ambulatory since SCT is less effective in treating this late stage & advanced progressive disease status.) So far I can only find people that are grateful they were able to receive a stem cell transplant to treat & cure their MS. If/when I do find anyone that is unhappy with their transplant beyond some period of time following the procedure (or a failure of the procedure to work on a personal level), I'll be sure to post it in a future blog page. It would be nice to know a complete and fair picture of the treatment results. But I think it's not unfair to say the overall results of a stem cell transplant are overwhelmingly on the positive side, especially for people that are still ambulatory when treated.
Stem Stem Cell "Treatments" (not Transplants)
I would like to make an important note here regarding stem cell "treatment" that many people are receiving. This is NOT the same thing as a stem cell "transplant," and is actually just another form of useless snake oil. Here is a passge from my very first posting of November, 2009 of this blog:
. . . . I should mention regarding other forms of stem cell therapy that are offered in an after-market environment. There are many companies offering stem cell therapies that collect stem cells from adipose fat tissue, bone marrow and other sources, and then do an IV infusion and/or intrathecal injections [to re-introduce these cells back into the body without the use of chemotherapy]. The theories cited for these treatments are usually valid, but from what I have learned not a single such "stem cell procedure" of this type has shown any clinical evidence for curing MS. Probably the downside risk is small for these therapies, but the upside usually fails to materialize and can be drowned out by the marketing hype of these companies (which is why these therapies are not available in the United States due to FDA restrictions). I feel sorry for people that get sucked into these programs that offer little clinical benefit beyond a placebo effect. And I feel especially bad for anyone seeking such a treatment in lieu of the true cure of a stem cell (bone marrow) transplant. . . . . .
Costa Rica, Panama and China have been the largest treatment locations for this clinically unproven therapy, although there are also many other (unregulated or unenforced) countries where such companies operate. Some facilities even un-necessarily venture into the ethically & morally questionable use of embryonic stem cells when adult hematopoietic stem cells are actually the preferred curative method where there exists no controversy or moral question. In fact, the Government of Costa Rica recently came to thier senses and decided to do something about companies offering such services with undemonstrated clinical efficacy and shut down the largest stem cell treatment center (ICM / Medistem / Cell Medicine), and likely will continue to do so with others still operating in the country. I'm thinking China likely will not make any changes to the status quo so long as it brings in money for them any way possible. Even if it is unethical, as such stem cell "treatments" are.

Check out this video excerpt from 60 minutes regarding stem cell quackery around the world:

"This isn't allowed in any serious country in the world," Health Minister Maria Luisa Avila [of the Costa Rican Government] said in a telephone interview. . . . . .

But still many people with MS are desperate for a treatment and some are angry the facilities are being shut down. The following video that I found on Youtube is of an individual that went to Costa Rica and had some of this unproven mesenchymal stem cell "treatment." I salute her for being proactive and wanting to take control of her disease, but unfortunately she operated off of flawed information. It is no mystery that she is unable to report stopping of the disease or meaningful improvement beyond normal & expected improvement following a relapse of her MS symptoms (the fact that she continues to have relapses at all is evidence that her MS is not cured). That is because she got the wrong stem cell medical protocol. If she would have received a hematopoietic stem cell "transplant" instead of a mesenchymal stem cell infusion "treatment," likely her disease would have been completely stopped and even reversed. I always keep in mind. . . . In-vitro (in the test tube) results do NOT equal in-vivo (in the patient) results. In the end the only thing that matters is clinically presented outcome. (My MS is not just stopped, it is slowly, but substantially reversing even as you read this. All without any use of MS drugs. That is how I define "clinical outcome" of a cure.) You'll also notice in the following video that she indirectly mentions the hematopoietic stem cell 'transplant' clinical trials in the United States (HALT-MS & MIST) focussing only on the chemo (which admittedly is a hard, but not impossible-to-endure part of the procedure) and completely ignores the fact that this is the only clinically-demonstrated procedure to cure MS today. The only comment contribution she makes for stem cell transplantation is that she uses the word "harsh" to describe the chemo (which I don't dispute), even though the chemo is a critical and necessary part of the cure. The chemo is absolutely required to reset the immune system flawed memory, otherwise there would be no cure without it! Like many people I'm still baffled as to why more people with MS don't recognize a stem cell 'transplant' for the only cure that it is for MS as opposed to the irrational belief in other un-scientific & unproven treatments. Is it just the money (cost of procedure)? Is it because they're really scared of the chemo treatment? Or perhaps something else that is more fundamental to human behavior? At this point your guess is as good as mine.
I just ask that you not be confused by all the (sometimes conflicting) terminology floating around out there regarding stem cells (as this individual clearly is). There is no substitute for the cure of a hematopoietic stem cell transplant (if the procedure does not use chemotherapy to ablate the immune system, then it's NOT a transplant). And the words from this individual receiving the wrong treatment tells me that there is still a lot of confusion out there. BTW. . . the stem cell treatment center that she went to, ICM in San Jose, Costa Rica, is the same stem cell center that has been permanently shut down by the Costa Rican Government due to lack of any proven clinical efficacy or medical usefulness:

Her own words that her "treatment" (that I am sorry) did not cure her:

And now for me that I have hit the critical six months post-transplant milestone, I am now officially past the most critical recovery time. And since I never got an infection or reactivation of any dormant virus, I'm not likely to get sick in such a manner from this point forward. Well, the odds are unlikely that I will get sick from anything specifically related to my treatment anyway. Now I will stop taking the Bactrim antibiotic and Acyclovir antviral medication.

Next stop. . . . before the end of the year I will start a re-immunization schedule for childhood diseases that I currently have no immunity (the same reason I no longer have MS).

And I would also like to mention what has become obvious to me while researching and being involved with this adventure in curing my disease. . . . . Although it works well for Multiple Sclerosis (and several other autoimmune disorders), an autologous hematopoietic stem cell transplant will not cure every disease. However, it has been shown to have similar (good-to-excellent) curative results for other hematologic-based autoimmune diseases. If I were otherwise afflicted with any of these other types of hematologic-based autoimune disorders (there are likely many more than I have listed here), I would also likely seek the same transplant procedure to cure it:

- Rheumatoid arthritis
- Scleroderma (Systemic Sclerosis)
- Inflammatory Bowel Disease (Chrohn's disease & ulcerative colitis)
- Systemic Lupus Erythematosus (SLE)
- Polymyositis
- Evans syndrome
- Hashimoto's thyroiditis
- Chronic inflammatory demyelinating polyneuropathy (CIDP)
- Graves' disease
- Autoimmune hemolytic anemia
- Autoimmune blistering diseases
- Autoimmune lymphoproliferative syndrome
- Myasthenia gravis
- Psoriatic arthritis
- Wegener's granulomatosis
- Sjögren's syndrome (Mikulicz disease, Sicca syndrome)
- Churg-Strauss syndrome
- Microscopic polyangiitis
- Relapsing polychondritis
- Pemphigus vulgaris
- Dermatomyositis / Polymyositis
- Ankylosing spondylitis
- Sickle Cell Disease can be cured with a similar HSCT procedure utilizing mixed chimerism with a partial match HLA doner

If you know someone with one of these diseases, you may want to let them know about the possibility of a hematopoietic stem cell transplant as a means to arrest the progression of the disease so they can make up their own mind.

From: digginya
July 4, 2010

I have scleroderma and RA as a result of that. I imagine this surgery is very pricey, no?

From George Goss
Julu 4, 2010

Hi digginya,

Interesting that you simulataneously have two very concerning autoimmune maladys that are not just serious, but also both have a hematological origin in thier pathology. Although I have never been afflicted with either disease, I can imagine that it may be quite serious for you. You have my empathy and compassion for what you are likely going through (and faced with) as a result of of these disorders.

However, because both of these autoimmune conditions are rooted in hematological causes (just like multiple sclerosis), both of these conditions have a greater chance-than-not of being cured (stopping of progression) by means of an autologous hemotopoietic stem cell transplant (AHSCT, same as I outline here in my blog). And although I don't know the status of your disease progression, there is a good chance that some of the damage (or physical deficit) can actually be reversed following treatment with an AHSCT. I refer you specificlly to the Europen retrospective study from Switzerland which shows good early treatment outcomes for a range of autoimmune disorders (including scleroderma and RA) and a good reason to consider AHSCT (you may want to take a close look at Table 5 in the paper which shows pooled results of clinical outcomes that indicates very good curative results for both Scleroderma and RA):

Likely, if I were in your shoes I would probably seek the same stem cell transplant treatment as a cure for the condition(s). An opportunity to potentially cure both diseases at the same time with a single stem cell transplant procedure "killing two birds with one stone." The cost would be the same as I incurred in Heidelberg, Germany at 50,000 Euros plus travel & lodging costs from whichever location you are. (Treatment of unexpected complications, if it were to occur, would be in addition to this basic cost.) Yes, it's a lot of money. But it comes down to the question of "how much is a cure worth to you?" I cannot answer that question for you (or any other individual). But for me, it was well worth the money (and time & effort) to cure my multiple sclerosis.

Please let me know if there is anything else I can answer for you.

Very best regards,


Additional note added July 6, 2010:

I should mention that a stem cell transplant cure is NOT specific to any one medical treatment facility. I chose Heidelberg for my own specific reasons (listed in the blog). However, if you are looking for a less expensive place, I'm certain there are many around the world that can perform a BEAM protocol procedure for less money. If I were otherwise unable to have the procedure completed in Germany, my backup plan was to have it done in India where the procedure cost is substantially less. I had contacted the Apollo hospital network (good reputation) and they offered to do an autologous stem cell transplant procedure for me in India for a total cost of approximately USD$40,000 (see my Day +58 posting for contact info). So please don't feel obligated to receive a SCT at any one specific facility without good reason. I just reccommend Hiedelberg because the experience for me was excellent with minimized risk (and the procedure successfully cured me of my MS).

1 comment:

  1. I have scleroderma and RA as a result of that. I imagine this surgery is very pricey, no?