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).

The CCSVI mythology

Thank you for visiting my blog. If after reading this page, I hope you will have an opportunity to scroll back up here to the top and follow this link to another page that I think has valuable information:

"I worry that, especially as the Millennium edges nearer, pseudo-science and superstition will seem year by year more tempting, the siren song of more sonorous and attractive."

- Carl Sagan

How fitting I found this quote of Carl Sagan's to be especially relevant to the subject in this posting. And on this subject I know this posting is going to upset many people in the MS community that are looking for an easy solution to cure MS. But sometimes the truth (or in this case, the facts) hurts. This page reflects my opinion along with some rational scientific interpretation about CCSVI since this is currently all the rage in the MS community. If you have a sensitive disposition and are unable to listen to other points of view, please stop reading now. I don't mind if others have a different opinion. I'm not going to try to force my opinion on anyone else that does not agree with me. If you have MS, are only looking for the cheap & easy cure solution (a stem cell transplant is neither), please don't read my blog. You'd be better off going somewhere else to get your info because I like to use science as my tool for finding a cure. And as a scientist, chasing the latest "fad" cure is not something that I do.

So for those that don't know about CCSVI, it stands for "Chronic CerebroSpinal Venous Insufficiency." A term and theory invented by Dr. Paolo Zamboni (not the same guy that invented the ice scraper). Zamboni is an Italian vascular surgeon, and as the story goes he was looking for a way to cure his wife of MS. So he decided to fall back on his area of expertise (which has nothing to do with immunology) and look for a "vascular" cure for MS. He purportedly theorized that MS is caused by a lack of blood drainage from the cranium resulting in an excess of Iron contamination of the nervous tissue which thereby causes cellular damage. So his easy (and less expensive) solution to the problem has been to do outpatient angioplasty (or alternatively a stent insertion) of the jugular return vein from the cranial cavity and thereby lessening the Iron exposure to the nerve tissues.

Here's a description. . . .

This treatment is also euphemistically called "the Liberation Procedure." But it won't liberate anyone from multiple sclerosis. The only thing it will liberate is money from your wallet for an ineffective and possibly dangerous procedure (people have died in the course of receiving this treatment).

But don't take my word for it. . . . . The top Germany NGO on MS has already issued a statement on the subject of CCSVI; "In our case, the lack of scientific Zamboni et al. study results did not present a sound scientific methodology and are therefore worthless and even ethically questionable." Ouch! Additionally, the Multiple Sclerosis Society of Canada (MSS) was quoted to say “. . . . . at the present time there is insufficient evidence to suggest that this phenomenon is the cause of MS.” According to Dr. Paul O'Connor, a neurologist at Toronto's St. Michael's Hospital "There is not a shred of real evidence anywhere that messing around with these veins does anything to help MS patients." The United States National Multiple Sclerosis Society (NMSS) has not yet issued a definitive statement on CCSVI because, I believe, they don't want to risk interrupting any funds from disaffected donors. Probably a wise business move for
thier own benefit.

This first report succinctly lays out the facts of the fallacy. . . .

Massive study disputes Zamboni theory of multiple sclerosis

"David Hafler, professor and chair of the neurology department at the Yale School of Medicine, said it’s “shameful” so much attention and investment is being placed on an idea that is simply not true in light of findings about the immunological roots of the disease."

Zamboni MS vein theory debunked by study

Concerns about controversial MS [CCSVI] treatment (BBC)

". . . . . seven published studies by independent researchers have failed to back up Zamboni's findings.

Some of those research teams have suggested that what he interpreted as abnormalities were in fact normal and harmless anatomical variations found in everyone."

And a BBC follow-up video:
Concerns about controversial MS [CCSVI] treatment (BBC)

"A new study provides more evidence that multiple sclerosis (MS) is not caused by a blood vessel condition [CCSVI], as some research has suggested."

"Based on those findings, Marder's group said MS patients should not undergo surgery to open up those blood vessels."

And a recent informational article based on info from the well respected Annals of Neurology. . . .

New Studies Question 'Venous Congestion' as a Trigger for Multiple Sclerosis

BOSTON -- August 2, 2010 -- Two new studies challenge the controversial hypothesis that venous congestion -- chronic cerebrospinal venous insufficiency (CCSVI) -- contributes to the development of multiple sclerosis (MS). This theory has resulted in many patients with MS receiving experimental endovascular angioplasty, an MS treatment unproven by clinical trials. The studies refuting the CCSVI theory with the first negative medical evidence on the subject are available today in the August issue of Annals of Neurology. . . . .

. . . . . These 2 papers should add a note of caution for MS patients and physicians who are contemplating interventions for possible venous abnormalities based on the findings of Zamboni. . 

. . . . . "Our results call into question the existence of CCSVI in a large proportion of patients with MS," said Dr. Doepp. "We did not find supporting evidence that cerebral venous congestion plays a significant role in the development of MS. . . . . 

. . . . . A second study by researchers at Umeå University in Sweden also concluded that CCSVI does not contribute to the development of MS. . . . . "Our study found no support for using endovascular procedures such as angioplasty or stenting to treat MS patients," Dr. Sundström affirmed. . . . . .

MS genetic discovery casts doubt on [CCSVI] vein theory

"It is now clear that multiple sclerosis is primarily an immunological disease. This has important implications for future treatment strategies.". . . The findings also cast doubt on the recent theory proposed by Italian vascular surgeon Dr. Paolo Zamboni that MS is related to blocked neck veins.
One study published this week in the Archives of Neurology found no significant difference in venous abnormalities between MS patients and healthy controls.

And also the following news articles summary as reported in the health sections of both the Wall Street Journal and the BBC. . . . .

Studies Cast Doubt on New MS [CCSVI] theory (WSJ)

Here is a great article from NPR that quotes one of the biggest medical profession's participants in the whole world of study of CCSVI (having earlier collaborated closely with Dr. Zamboni). And if Dr. Robert Zivadinov of the Buffalo Neuroimaging Analysis Center in New York says it, then this must have important meaning.

Doctor Challenges Cause Of MS And Treatment

"Meanwhile in Buffalo, Zivadinov says his research on CCSVI already shows a clear picture emerging. "CCSVI is not the cause of MS but might be a consequence or a contributing factor to progression, and I think that has to be studied," Zivadinov says."

And from a very important scientific standpoint I think this investigational result from Wayne State University clearly indicates that it is the immune system's T-cells (and their corresponding wayward epitope repertiore) that cause the underlying MS disease progression and relapses. These medical researchers could not have possibly produced this defiinitive concrete data result if the cause of MS were CCSVI:

Researchers publish results settling multiple sclerosis debate

"This work is significant because for the first time we are able to definitively establish a cause-and-effect relationship linking the marked T cells to the development of relapses and show unambiguously that it was the same T cells that mediated relapsing cycles."

And. . . .

Discovery of new genetic risk factors for multiple sclerosis confirms that the disease is of immunological origin [not vascular]

And here is a CBC news segment on the subject of CCSVI treatment people are getting that clearly indicates the procedure is nowhere near risk-free (an abysmal risk/benefit ratio since there is no reproducible demonstrated benefit to be seen here, just the chance of injury or death). . . . . .

Here is a brief lecture on CCSVI from
Dr. Klaus Schmierer, a consultant neurologist at Barts and The London Hospital and Queen Mary's University of London. I especially like his talk because he aptly brings in the issue of The Scientific Method in evaluating CCSVI as a (lack of) cause of MS.

CCSVI - Big Idea Little Evidence [actually, NO direct supporting evidence]

New Genes Confirm Immune System 'Intimately' Involved in MS

 Vascular Theory Takes a Hit - On the basis of this new research, it is clear that MS is "primarily an immunological disease. This is the way to nail this disease and get on top of it," Dr. Compston said. There is also evidence of "an interplay between genes and the environment," he noted.

And I found a blog website written by a highly experienced vascular surgeon (Dr. Colin Rose) that goes into far more detail regarding the myth of CCSVI:

The Zamboni Myth: Why “CCSVI” is Surreal

One of my favorite passages from this site. . . . . .

There are a number of cardiac conditions, such as tricuspid insufficiency and constrictive pericarditis, in which central venous pressure and jugular pressure are markedly elevated over long periods. Never has MS been described as a complication of these diseases.

But the MS Society of Canada has now been intimidated by desperate patients into funding a trial of the Zamboni procedure. I will be surprised if any of these grant applications are approved by a scientific review committee. . . . . If “CCSVI” is causing brain pathology, it must do so via some mysterious, unmeasurable, un-disprovable “reflux”, not amenable to the scientific method.

Zamboni’s myth is not science; it’s a surreal artistic creation in that this process can never be reproduced by other investigators. But all this is really irrelevant anyway because such flow patterns can never damage the brain without causing an increase in cerebral capillary pressure. Any MS patient with a large enough increase in venous pressure to cause red cells to leak out of small veins would have a head that looked like a leg with severe varicose veins; his eyes and tongue would protrude and his face would be very swollen and blue. So, there is no point in even funding a trial of the “liberation treatment” because it is impossible to know what Zamboni actually did and the basic science says that there no point in even trying to figure out what he did. When one doesn’t even know how to reproduce a test, how can one do a clinical trial of it? No more money should be wasted on the Zamboni myth.

We will keep our readers updated on the expansion of the Zamboni myth and it’s inevitable implosion. When it does implode, I would hope Dr. Zamboni will indemnify all patients and insurance plans who wasted money on imaging for “CCSVI” or “liberation.”

CCSVI treatment as a cure for MS is really just junk science that has yet to withstand any valid scientific scrutiny. What started me really thinking about this is the question "for people with hemotomachrosis (a genetic abnormaility that results in EXTREMELY high Iron in the blood), why do they not experience MS at rates greater than the normal population?" Additionally, if MS is a vascular disease then why do immunomodulators (interferon, glatiramer acetate and tysabri) have been proven to slow down the disease for several hundreds of thousands of people taking these drugs around the world who are afflicted with MS? These drugs should otherwise have no positive effect at all if the cause of MS is "vascular" in nature. The answer is because MS is not a vascular disease and is not caused by high Iron exposure to nerve tissue (as CCSVI purports). The putative mechanism of cure for CCVSI treatment and that of hematopoietic stem cell transplantation (for now the only scientifically demonstrated cure for the majority of people that choose to receive the procedure) is completely different. And these very dissimilar treatments can't both be correct. Another particularly interesting supportive piece of evidence that MS is not vascular, but is instead an autoimmune disease is that pregnant women that also have MS that are in the third trimester of pregnancy do not experience MS relapses. This is because the human female body suppresses her own immune system so as not to reject the growing baby from her body. The side effect being that the MS disease activity is suppressed during that same time, as well.

And in addition to all the scientific results already established in the stem cell transplant clinical trials, I now know that a stem cell transplant cured me because of my lack of clinical progression (and clinical symptomatic reversal, as well). I've taken the time to ensure it's definitive, not just a placebo effect.

A friend of mine (fellow MS'er that also has a scientific mindset) astutely made the following rational comments that add a plausible explanation for the existing CCSVI bood flow study results out of New York. . . .

The University of Buffalo published the first U.S. study of
the link between CCSVI and MS earlier this year. The
patients in the study were volunteers, so it's not the ideal
of a truly random sample from the general population, but
it's better than Zamboni's sample. All were examined
concurrently and the examiners were blinded with respect to
the patient's MS status. The result: Among the MSers, 56.4%
had CCSVI, 10.2% were borderline CCSVI, and 33.4% did not
have CCSVI; Among the healthy controls, 22.4% had CCSVI.
Now, this is a strong correlation, but it is far, far from
being cause and effect. And, the results have not been
examined for other contributing factors such as lifestyle.

Let me suggest a hypothesis I find a lot more plausible than
"CCSVI causes MS"; that is, the sedentary nature of many MSers
causes CCSVI. Think about those bulging veins you see on
body builders; I bet those people don't have CCSVI. The ratio
of 2 to 1 CCSVI in MSers vs. healthy controls might just be
the ratio of sedentary people in the two populations.

This supports the "correlation is not cusation" concept.
There are years of work ahead in examining CCSVI and it's
relation to MS. Right now, I wouldn't give a plugged nickel
for the chances of CCSVI being even so much as a minor
contributing factor in MS.

To continue. . . . . there has been no 'valid' clinical study of any type showing any form of lasting patient clinical benefit (other than a temporary placebo effect) for the CCSVI procedure as has been shown in several scientifically-valid clinical trials for stem cell transplantation (which has finished all FDA stage II trial patient treatments and the stage III trial is now in full swing here in the US). Zamboni's initial biased "study" (I hate to even call it that) was performed on a small group of MS patients that had the relapsing form of MS. And because he only included people that were in the middle of a relapse episode, even if no action were taken the MS patients would have improved, regardless. In other words, by design there is no way Zamboni's flawed "study" could have failed. Zamboni erroneously attributed the improvement to his agioplasty "treatment." But it is no mystery that the patients improved because they would have improved no matter what, even if they went untreated! I'm reasonably sure that truly scientific testing results will eventually bear out the flasehood of CCSVI treatment efficacy and disprove the purported merits of CCSVI as a cause of MS.

What this really comes down to is not Dr. Zamboni, or even CCSVI itself. This really is all about the whining constituents of the MS community that are looking for an easy, cheap, fast & painless cure for thier MS. However, such a cure does not exist. MS is not a vascular disease, it's a hematologically-rooted autoimmune disease (just like Rheumatoid Arthritis or Scleroderma). So there is only one clinically-lasting beneficial treatment for MS; it is a procedure that halts the body's underlying autoreactivity that effectively stops the immune system from attacking one's own body and restoring immune self-tolerance. And as of today only a hematopoietic stem cell transplant can do this.

And by the way. . . . for all you paranoid conspiracy theorists out there that think I'm against CCSVI because I'm somehow in cahoots with the drug companies. . . . WRONG!. . . like everyone else receiving a hematopoietic stem cell transplant I have been completely and 100% freed from ever having to again take any immunomodulatory drugs to treat my MS. After 15 years of use I'm now off all MS drug treatment since my stem cell transplant cure. In fact, if the conspiracy theorists were actually correct in their irrational assertion that somehow big pharma is trying to supress a cure for MS, then the pharmaceutical companies would be dead against a stem cell transplant as a cure (which I have seen absolutely no evidence of this) becuase it frees people from continued use of expensive immunomodulator drugs. Making a logical extension of this concept, it's not a conspiracy that is holding CCSVI treatment back as a cure. It's more fundamental. . . CCSVI treatment physically does not work as a cure. Bottom line. . . Even if some people with MS do have veins with ristricted flow patters, that does not mean that it causes MS. Correlation is not causation.

Now don't get me wrong. . . . . I wish that the medical community and researchers could find a quick & easy solution to cure MS. Unfortunately such an easy solution is not here yet (and perhaps never will be). I thank god that I had the opportunity to choose to be cured of MS with a stem cell transplant, hard & expensive as it was. At least I feel I worked for my cure. And that makes it all the more valuable to me.


From: Allen
Subject: re: CCSVI
Date: Friday, June 25, 2010

Hi George,

Thanks for your post on CCSVI. It's always good to hear from both sides. I just stumbled upon your blog and look forward to reading more about your stem cell procedure. I've read some vague accounts in the news so it will be good to get more in depth info.

I'm curious what your thoughts are on the only scientific study on CCSVI (at least that I'm aware of):

"CCSVI prevalence was 56.4 percent in MS subjects and 22.4 percent in healthy controls.

In this large MS cohort, the presence of CCSVI did suggest an association with disease progression"

I feel like there's a lack of evidence to disprove or prove CCSVI, and given this study it is probably something worth more research.


From: George Goss
Subject: re: CCSVI
Date: Friday, June 25, 2010

Hi Allen,

Thanks for your e-mail and insightful comments. I appreciate hearing from someone that can look at both sides of the issue without getting hostile.

And thanks for reading the blog. If you would like to read the beginning, it gives a fairly good summary of what the stem cell transplant cure is all about and overview of what I did. This is the first post (at that time I didn't know for certain that it would cure me. But it has worked out wonderfully for me and cured me, as it does for more than 80% of those undergoing the procedure.). . . . .

Also, your comments regarding CCSVI are very astute. I'm glad to see someone that looks at the information objectively instead of a visceral emotional and irrational reaction that many people in the MS community have. It's troubling to see people treat CCSVI as if it were curative dogma since nothing as such yet exists. (Not even a stem cell transplant.)

Regarding the subject of some correlation between CCSVI and MS. I think you are correct that there may indeed be some relationship between the two. However, the way I look at it it's a matter of "the dog wagging the tail," or "the tail wagging the dog." I believe that it is conceivably possible that there may be some factor of blood flow that is the result of an autoimmune disease, but unlikely to be a causative factor. Looking at the fundamental etiology, it is quite difficult for me to reconcile the already-established causality of autoimmunity for MS and the features of what CCVSI is purported to be by it's advocates.

It would be fantastic if I were wrong. But the already-existing data on autoimmunity as a cause of MS is so very much overwhelming, it's difficult to imagine that all those man-years and clinical trials already expended (and ongoing) to be proven wrong. If that did happen, it certainly would turn science on it's head.

Regardless, you have brought up great questions and it has made me think about this since so many people desire more detail (and actually "answers" that don't yet exist). I will enjoy to look into the specific details of the UB study to dig further. In fact, after I look at it more I think I will even give Dr. Robert Zivadinov at UB a call to ask him some questions myself.

I'll definitely let you know if/when I find out some more info that might be relevant.

Best regards,


Follow up comments by George Goss on June 26, 2010:

No need for me to dig into this any deeper. I read the study design, protocol and results. There is no doubt it was a properly conducted study. But by design the study does nothing to associate "causality" of MS via CCSVI. So all the study indicates is that more study is required. It provides no additional hope of a CCSVI cure beyond the unsubstantiated claims already made by Dr. Zamboni.

Bottom line of the study result summary. . . . . people with clinically definite MS are roughly twice as likely to have narrowed (or slightly restricted) jugular veins compared with people without MS. But the study did nothing to address the understanding or underlying reason of why this occurs (which is the additional study required). And also, why do 22% (a very large and significant number) of people in the study that have resistricted veins not also have MS? I go back to my consistent previous contention that it is more likely that CCSVI has a non-causative association with MS, and is not itself the cause.

So even if CCSVI as a cause of MS were proved correct, based on the results of this
trial only about half of all people with clinically definite MS could be cured. That is far lower than the 80%-85% of MS patients that have already been shown to be cured with a stem cell transplant. So which one is the cure?

Food for thought. . . . . there is a substantially stronger correlation between T-cell loading and MS disability progression than there is with CCSVI and disability progression (which is why immunomodulator drugs have a significantly positive impact at reducing MS progression). So if weighing these CCSVI study results in the most favorable light versus the pharmacological studies of immunomodulators, the preponderance of evidence still stacks up overwhelmingly in favor of MS being an immunological (autoimmune) disease.

Just so I'm not beating-around-the-bush. . . MS cannot be cured by CCSVI treatment, and the latest clinical trial does nothing to dissuade my thinking in this respect.

By the way. . . I'm all for more research on CCSVI. There is clearly some relationsip between MS and restricted jugulat vein(s). I'd really like to know why. More knowlege, not less is always better. It's just troubling to see so many people understandably looking for a remendy for thier MS and and then irrationally jumping on the CCSVI "cure" bandwagon with absolutely NO scientific evidence that it has any positive impact on MS, as is the case today.

From: Rose
Subject: Why say hoax?
Date: Monday, June 28, 2010, 2:19 PM


I came across your blog in my endless search for Internet knowledge and was drawn to your post because of your choice of words. Now, that may be why you used that word but I find it interesting that there are a few people (or perhaps more-I know I don't have all the info) out there that keep arguing against CCSVI calling it a hoax, more specifically to the treatment and its effectiveness. I think CCSVI is not a hoax but an expansion of previous ideas and research by many other people. Some of the research has not been connected to each other and I am unsure how much of it all that Zamboni et al have even reviewed. I do know that it is known in the vascular world that stenosis in the vasculature, anywhere in the body, is not good and needs to be corrected.

I have come across a lot of research and case studies done that points to a link between vascular stenosis and neurological damage. I do not argue for the MS-CCSVI causual link, I have a feeling it is more complex than a simple stenosis issue; but I do see a certain validity to the underlying vascular issues. Especially since so many interventional radiologists are now pulling blood clots from MSers veins.

Of course this raises the question, what was their diagnosis status? Mine is solidified by only 2 of the 3 requirements, I have no lesions. Does that make my diagnosis questionable? Unsure. But many MSers have been diagnosed based on less than what I have been. How many MSers truly have MS? Without perfectly strict rules, it is impossible to say. The McDonald Criteria for diagnosis have been changed over the years and are, well, a bit on the flexible side for diagnosing patients.

Getting back to the hoax issue, what about the diabetic and cancer patients that experience neurological damage symptoms when it is discovered they have developed clots or stenoses in their veins because of long term catheters used for their treatments. Once those veins were cleared, their neurological symptoms were alleviated. These issues are not hoaxes but then they are not linked to MS. (I have that research somewhere, just have to dig it up...if you are interested.)

There is a 2007 paper "The Differential Diagnosis of Multiple Sclerosis" (Rolak & Fleming) that lists as an option for partial diagnosis "Table 2. #11. Cerebrovascular disease" and in "Table 4. #2. Arteriovenous malformation." So here we have another potential for a vascular issue with neurological symptoms and an issue with diagnosis.

There is also the argument for or against the autoimmune part of MS. A 2004 paper "Multiple Sclerosis is not an autoimmune disease" (Chaudhuri & Behan) puts up a convincing argument against. But I am still on the fence as far as which it is or isn't but as new discoveries are made the more we will know.

This 1999 neurosurgery paper "Endovascular Recanalization with Balloon Angioplasty and Stenting of an Occluded Occipital Sinus for Treatment of Intreacranial Venous Hypertension: Technical Case Report" (Neurosurgery, April 1999, Vol. 44, Is. 4, ppg. 896-901) is an extreme case, but shows that such stenoses do cause neurological problems. Would it not be safe to say if such a stenosis were gradual, say over a period of years even decades they could also create such damage and symptoms?

Basically, why say hoax when it really is an issue of disease relationship. Perhaps Italy is right in separating CCSVI from MS? There is still so much to learn and discover in all of this.

I enjoyed reading your post, I hope my terribly longwinded response did not bore you too much.


From: George Goss
Date: June 29, 2010

Greetings Rosie,

Thank you for you message. All of your comments are lucid, relevant and make complete sense to me.

And first off. . . . thank you for highlighting my use of the word hoax. Now that I have thought about it the word got close to my intent, but was not precise enough. I have changed the blog title to reflect a more precise nomenclature. I use the word mythology because there is absolutely no curative data for CCSVI treatment of MS, but there seems to be so much irrational belief in it in it anyway. It really makes me wonder why would so many people put their faith into a procedure that has absolutely no demonstrated curative benefit when stem cell transplantation shows such good curative results?

And regarding your note of vascular causes of neorologic problems. I agree, I'm certain there are a great number a syndroms associated with vascular stenosis (such as diabetes). I just feel confident that MS is not one of them. And for one reason. . . . there is so much immunological clinical trial data developed so far that squarely puts autoimmunity in the spotlight as a cause (or "action," if you will) for MS. Combined with the dearth (non-existence, actually) of CCSVI causal data, this makes me defer to what has already been shown with "real" curative stem cell end-point data. CCSVI does not fall into that category whereas stem cell transplantation does. It appears to be a serious uphill battle if CCSVI is to displace the immunological model as the etiology for MS. And that means beating an 80%-85% cure rate that stem cell transplantation has already demonstrated in multiple scientifically clinical environments around the world.

Best regards,


From: Rose
Subject: CCSVI
To: "George Goss"
Date: Wednesday, June 30, 2010, 8:53 PM

You make a good point on the etiology issue. I am pretty convinced that there is just not enough data to put CCSVI at the top of the causal list for MS. Or even in the top ten; but that remains to be proven definitively.

I think stem cell therapy is a great option, it just has a long way to go and a huge conservative religious right to overcome here in the US. Mind you, I am not one of those people. I have found that no matter how much you argue that stem cells can come from other sources that are not embryonic, many of these individuals will not allow such things to sway their opposition. They believe that any stem cell research can create a path to embryonic...and well, the argument has no end and I usually just find a reason to get out of the conversation. :)

I must also say I have an issue with the term "junk science" for Zamboni's work; but perhaps that is how all different opinions and out-of-the-box research is described until there can be a significant amount of verifiable corroborating evidence. What about the Australian pair that discovered a bacterium as the source of peptic ulcers?

"His work was not received enthusiastically. In Marshall's words, "When I was criticized by gastroenterologists, I knew that they were mostly making their living doing endoscopies on ulcer patients. So I'm going to show you guys. A few years from now you'll be saying, 'Hey! Where did all those endoscopies go to?' And it will be because I was treating ulcers with antibiotics."

Should be an interesting next few years of research for and against CCSVI.

I wonder, how do you feel about all the hubbub in regards to MSers who have had the angioplasty and are experiencing significant changes to their MS symptoms? Do you also feel that the personal experiences are a result of the placebo effect? If so, what does that say about our MS symptoms that they can be fixed with a placebo and not the drugs that we take daily? Or is it all just smoke and mirrors?

I have to admit, I am quite amused by the next stage in BNAC's study involving the 'fake' angioplasties they are reporting they will include in their study. How exactly do you fake a catheter going through someone's body and inflating a balloon in their neck? We have heard, and see, so many accounts of the angioplasty procedure that we are completely prepared in what to expect. I think a medical procedure such as this one cannot possibly be faked. We shall see what happens next.

On another note, my father is from Chile and he tells me they are doing great things down there with stem cell research and treatments. This he learns from his sister who still lives there.

How exactly did you receive stem cell therapy? And please forgive me if you have posted details in your blog, feel free to let me know and I will dig deeper into your posts.


From: George Goss
Subject: CCSVI
To: Rose
Date: Thursday, July 1, 2010, 11:04 AM

Hi Rosie,

Having a discussion with you is nice because you have so many great points. I hope you won’t mind terribly much if I bounce some of my observations and opinions off you based upon your comments. . . . . . .

- Stem cell transplant therapy, just like all medical therapies, does have a way to go before it is finally accepted as putative. However, it's just now in the final stages of FDA phase II trials with phase III trials planned. Based on an extrapolation of this schedule, I believe it's entirely possible that a stem cell transplant will become standard curative therapy for MS within ten years. At that point insurance should cover the cost of the (cure) procedure. For now, it has to be paid out-of-pocket. And unfortunately it's not an inexpensive procedure.

- Interesting that you mention embryonic stem cells and the tumultuous controversy surrounding them. Other people also brought up this subject when I told them I was getting a stem cell transplant. But actually, with an autologous stem cell transplant the patient is only getting their own stem cells back. The stem cells do not come from another donor or any embryos. So there's not a lot of controversy here. Interesting that to my knowledge, there is not a single disease currently curable by embryonic stem cells.

- I believe that I appropriately use the term "junk science" to describe Zamboni's original study. The "study" was designed and executed by Zamboni so that it was impossible to fail (meaning that the results are meaningless). That is not science. And in the words of the European science establishment I also believe it was completely "unethical."

- And I'm also familiar with the discovery of Helicobacter pylori as a cause of gastric ulcers. Remarkable work done by the original investigators and my hat's off to them for their perseverance in the face of then-dogma. But even though they were going against the putative beliefs of the time, I'm not aware of anyone calling their discovery junk science. In fact, it is their following of sound scientific principles that eventually led to the acceptance of bacteria-as-a-cause of gastric ulcers. But I think Zamboni's theory and the theory resulting in the H. pylori cure is not comparable. Making Zamboni a martyr does not make CCSVI more real as a cause (or cure) of MS.

- I am also looking forward to CCSVI study results over time. Even though I think it will never result in a cure, I am interested in knowing more about CCSVI's association with co morbidity factors.

- If people with MS seek and receive CCSVI treatment, that's OK with me since it's an individual decision. However, I think any improvement is more likely a placebo effect, than otherwise. And yes, the placebo effect is real, but it's not a cure because it's not lasting. Most people with MS will continue to degrade over time, with or without CCSVI treatment. For those that do get CCSVI treatment, that is setting a lot of people up for some serious disappointment (and waste of their money).

- So far today only a stem cell transplant (also sometimes called a bone marrow transplant) has consistently shown greater than an 80% cure rate for MS (and for several other autoimmune diseases, as well). Any placebo effect has been excluded from those studies. All the study info is public for review. You can see some of the data on my stem cell references page:

- There are two major types of stem cell therapies that are vastly different from each other. The only one that will cure MS is by first harvesting stem cells from your own body and then destroying the bone marrow with high dose chemotherapy. Following this your own stem cells are then re-infused back into your body and then this results in re-growing the bone marrow and having a "reset" immune system that no longer attacks your body. This is what I did and for me it worked fantastically well. I'm definitely cured. However, the other form of stem cell therapy takes stem cells from your own body, and then without destroying the bone marrow the stem cells are re-infused back into your body. This type of "stem cell therapy" is worthless and has no demonstrated clinical benefit at all. There are many companies all over the world offering this treatment to patients just to get money. Sad, but many desperate people go for this treatment looking for a cure, just the same reason I believe people get CCSVI treatment. They hope it will cure them even though there is zero evidence it has any long term benefit.

- A stem cell transplant (the type I received) is a hard procedure (makes you quite sick for a week). But it's not an impossible procedure to endure. Also, it's quite expensive. So how much is a cure for
MS worth? That's a personal decision for each individual.

- You can find out about my stem cell transplant procedure by reading my overview page here:

I'm not pushing this stem cell transplant on anyone even though it is the only cure available today. If you have any questions or comments, I'm always glad to receive your e-mail.

Thanks & regards,

- George

Wednesday, June 23, 2010

The Science Behind Stem Cell Transplantation to cure MS

There is currently only one scientifically-demonstrated & confirmed treatment for Multiple Sclerosis with enduring curative efficacy: Hematopoietic
Stem Cell Transplantation (HSCT). This is not a new medical procedure; it has been performed millions of times all around the world since the 1960's for treatment of cancer (now approximately 50,000 times per year) and has been used successfully to cure several types of hematologically-rooted autoimmune disorders since the early 1990's (such as MS, scleroderma, rheumatoid arthritis, lupus, CIDP and others). It involves chemotherapy so the treatment is both uncomfortable and expensive (most medical insurance will not yet cover it for treatment of an autoimmune disorder until the phase III clinical trial is completed later this decade, or the beginning of the next). It is not an impossible procedure to endure, as many people do it (including me) and make it through just fine. But this procedure is currently the ONLY treatment that has been scientifically verified to stop the underlying MS disease process, restore normal immune self-tolerance and produce lasting curative symptomatic improvement for the majority of MS patients, as it has for me and others. And definitely worth mentioning. . . . probably one of the biggest intangible benefits to stopping the MS disease progression is that this treatment restores a degree of certainty to the future of a person's life that MS often robs us of. To me this has been worth more than gold. Beyond this the only outstanding question of relevance here. . . . How much is a cure for MS worth to you in terms of time, inconvenience and money? Something that can only be answered by each individual.

The reason you probably have not previously heard of this treatment and it's curative effect on MS is because it is still a rather uncommon procedure for treatment of autoimmune disorders. But that is changing. As of 2008 there were a cumulative total of 400 people worldwide that had undergone HSCT for the treatment of MS. Admittedly that's not a huge number. But by 2010 that number had jumped an additional 20% to 500 people treated worldwide for MS, and a total of about 1000 for all autoimmune diseases combined with the number continuously climbing. (As of 2012 the numbers are closer to 1000 treated for MS, and closer to 2000 for all autoimmune diseases combined.) So it is just now starting to gain more traction and acceptance by the broader medical community for the treatment of MS. I'm probably the first person from North America to have the procedure completed outside of a clinical trial or study to cure my MS. But just wait until the phase III clinical trials are complete later this decade, or early the next. Then the numbers will quickly jump into the many thousands. I guarantee it!

This table (I borrowed from Dr. Dimitrios Karussis of Haddasah-Hebrew Medical Center) shows the total number of people with autoimmune disorders (including MS, scleroderma, rheumatoid arthritis, lupus, juvenile arthritis and others) worldwide that have undergone HSCT over time for the treatment of their specific disorder (click to enlarge):

One of the most compelling reasons in support of HSCT as a cure for MS is that when you read the various & substantial foundation clinical science data it is very consistent across studies and trials. Not just a little consistent, but extremely consistent. Such reproducibility is the gold standard of science and is what really tipped my thinking overwhelmingly in favor of pursuing HSCT to successfully & completely stop my MS disease activity.

But before cutting over to reading all the science, it is important to mention this critical point. . . . . Looking at the global studies to date and building on the clinical experience and knowledge developed so far, it is well understood that people treated earlier in the MS disease cycle as opposed to later fare much better with curative HSCT treatment results. Individuals that have RRMS with a fully ambulatory Expanded Disability Status Score (EDSS) experience essentially 100% halting of their MS disease activity (my personal definition of a cure), and then on top of this better than 80% of the same group of people actually experience significant reversal (improvement) of their MS-related disability and symptoms. In effect, not a single person treated during this earlier (ambulatory) MS stage appears to experience symptomatic worsening following hematopoietic stem cell transplantation, but instead have an excellent chance of reversing their existing disease symptoms (if you consider greater than >80% an excellent chance, which I do). Unfortunately the curative results are not as impressive when utilizing HSCT for treatment of patients that have a later-stage non-ambulatory progressive MS disease status. So although likely that the progression of MS disease activity will be stopped in all forms of MS (both relapsing and progressive) following HSCT, people with advanced progressive MS are unlikely to see as much overall improvement (reversal) of existing symptoms, if at all. I have created an interpolated graphical slide to categorize the expected approximate relative probability of curative efficacy and symptomatic improvement (based upon finite data from the clinical trials) following hematopoietic stem cell transplantation vs. disease status at time of treatment which clearly favors earlier treatment, as opposed to HSCT later in the disease cycle when demonstrated benefits are usually not as obvious or dramatic (click to enlarge):

However, for the majority of people that do experience symptomatic improvement, the rate of improvement is likely not time-linear and will usually begin to slow within the initial couple of years following transplantation, following an "expected" curvilinear asymptotic slope of diminishing returns over time. That basically means that the majority of symptomatic improvement (for those that do experience improvement) will be predominantly evident in the earlier months and years following recovery from the acute chemo effects of HSCT. For the majority of people that will experience symptomatic improvement, likely it will continue going forward but at a diminished rate over time. As a general rule the curvilinear shape of this symptomatic improvement curve will likely be evident for most MS patients receiving HSCT (and is what I am personally experiencing following my own HSCT procedure). However I'm sure the precise slope of this curve will somewhat differ for each individual based upon variable factors that include the phase of disease activity (RR, SP, PP) and relative total disability at time of treatment. The curve is likely "taller" for relapsing cases and likely "flatter" for progressive cases. (click to enlarge):

And a video from my six month blog posting (when I realized that my MS disease progression was both stopped, and reversing/improving in which I describe this phenomenon that continues today more than one-and-a-half years post-transplantation. . . .

My blog is presented completely in chronological order from before I started my treatment, to after. This post page just provides reference information for those that want to know more details regarding the clinical science. If you want to know about the experience, you can start at the first page of my blog and follow along to the happy & successful ending (I originally wrote this blog for family & friends to track my progress, but I also hope this info will help others possibly interested in this cure).

And the science. . . .

It is still not understood "why" MS occurs. But it is well understood "what" is happening in individuals with MS.

As for the cause. . . The general prevailing (unconfirmed) belief among scientific professionals is that a genetically susceptible / vulnerable individual is exposed to a yet-to-be-identified environmental antagonist that initiates the neurologically-damaging immune self-intolerance of MS. I have heard the apt analogy that genetics loads the gun and the environment pulls the trigger. Clearly more elucidation is required in this area. However, here is some relevant scientifically-determined information from researchers at the University of California, Irvine pointing down this path:

Link Between Environment and Genetics in Triggering Multiple Sclerosis

New genetic clues to multiple sclerosis

Genetics and the environment converge to dysregulate N-glycosylation in multiple sclerosis

MS genetic discovery

New Genes Confirm Immune System 'Intimately' Involved in MS

As for the underlying MS disease process / progression, the overwhelmingly-established science and scientifically-valid data clearly indicates that the mechanistic action of the underlying MS disease pathology is that of self-intolerant autoimmunity. Most doctors / researchers now consider this as fact, not just conjecture as explained by these research scientists at Wayne State University:

Researchers publish results settling multiple sclerosis debate

"This work is significant because for the first time we are able to definitively establish a cause-and-effect relationship linking the marked T cells to the development of relapses and show unambiguously that it was the same T cells that mediated relapsing cycles"
"Targeting such disease-causing T-cells in MS is definitely a valid therapeutic approach that should be pursued," Tse added.

And indeed, this is exactly what HSCT does.

How & why does HSCT cure multiple sclerosis?

As a curative treatment HSCT works by partially or completely erasing the body's immune system memory. This effects a beneficial change of the body's overall B- and T-lymphocyte epitope (antigen binding) repertoire, inactivating autoimmunity (making the body's immune cells "antigen naive") which results in restoration of immune self tolerance. This is often referred to as "resetting" the immune system which stops the underlying MS disease activity & progression. Once achieved, the body then has a chance to repair (or compensate for) existing neural damage that is not undermined by further MS disease progression, often resulting in substantial and lasting symptomatic improvement.

The interesting fact here is that it is the chemotherapy which is effecting the curative aspect of the treatment by wiping out long-lived T- and B-lymphocytes of the body that carry the faulty autoreactive memory so they may be replaced by naive, unprogrammed and self-tolerant non-autoreactive lymphocytes generated by the bone marrow. The stem cells themselves are not the specific reason for the curative effect of this treatment. The re-infusion of the hematopoietic stem cell graft is simply for the purpose of re-establishing the bone marrow which has been ablated as part of the chemotherapy conditioning. So in effect, the stem cells are not curing the patient of MS, but are instead "rescuing" the patient from possible mortality as a result of the curative chemo conditioning regimen. This is why the stem cell graft is sometimes referred to as "stem cell rescue." It's just rescuing the patient from near certain death (for myeloablative protocols) due the treatment and adding an extra measure of a safety factor for non-myeloabltive protocols.

The takeaway concept here is no chemotherapy = no cure. This is why simply injecting stem cells into the body does not render the body's immune system self-tolerant as is required to stop the underlying MS disease activity. Sorry. No free lunch here.

And the clinical data. . . . .

Clinical research into HSCT as a treatment for autoimmune diseases (and MS specifically) began in earnest approximately 20 years ago in the early 1990's in Europe. Here is an early report of a retrospective compilation of many of these clinical data:

University of Basel, Basel, Switzerland - Immune ablation and stem-cell therapy in autoimmune disease Clinical experience (published 2000)

And here is an updated paper from the same group regarding the current (published 2010) status. . . . .

Hematopoietic Cell Transplantation for Autoimmune Disease: Updates from Europe and the United States

Then in the 19990’s Dr. Richard Burt (formerly with the US NIH and currently a researcher at Northwestern University Feinberg school of medicine, Chicago) whom became interested in the work began the first US-based HSCT clinical trial work with myeloablative hematopoietic stem cell transplantation (HSCT) for MS. He later (collaborating with Prof. Shimon Slavin) worked to find a way to maintain the efficacy and to reduce the (then) mortality of the treatment by switching to a strongly-lymphotoxic (and milder myelotoxic) chemotherapy protocol with either (Fludarabine + Cyclophosphamide or Campath-1h) or an alternate therapy of a combination of (Cyclophosphamide + Anti-Thymocyte Globulin (rATG)) which does not kill off 100% of the bone marrow; reducing the period of time the patient must survive with degraded (not ablated) immune function and a corresponding risk reduction of possible infectious treatment complications. This work continues today with the completion & evaluation of a NIH/FDA phase II Clinical Trial and an ongoing randomized phase III trial with very good consistent curative results.

A graph I created that shows a comparison of the relative engraftment recovery profile and corresponding innate-basic immune function recovery for both myeloablative and non-myeloablative (lympoablative) protocols:

Dr. Richard Burt, Northwestern University Feinberg School of Medicine, Chicago:

WHO WE ARE: Richard K. Burt, MD

DIAD (Division of Immunotherapy and Autoimmune Diseases), NWU Chicago, IL

To watch videos about the work at the Division of Immunotherapy and Autoimmune Diseases (DIAD), please click on the link below to access an assortment of informative videos:

JAMA Report - Dr. Richard Burt video; stem cell use improves the lives of Multiple Sclerosis sufferers

Turning the tide on multiple sclerosis

Autologous non-myeloablative haemopoietic stem cell transplantation in relapsing-remitting multiple sclerosis: a phase I/II study

Lupus and MS Treatment with Adult Stem Cells with Dr. Richard Burt - ABC News Video (watch past the Lupus patient to see the MS patient treated with HSCT)

Hematopoietic Stem Cell Transplantation: A New Therapy for Autoimmune Disease

Turning the tide on multiple sclerosis

Hematopoietic Stem Cell Transplantation for Multiple Sclerosis

Treating MS Symptoms With Stem Cells

Hematopoietic stem cell transplantation for autoimmune diseases: What have we learned?

Phase II FDA trial - MIST (Multiple sclerosis International Stem cell Transplant) phase II clinical trial - Hematopoietic Stem Cell Therapy for Patients With Multiple Sclerosis

Phase III FDA randomized clinical trial - Stem Cell Therapy for Patients With Multiple Sclerosis Failing Interferon A Randomized Study

Clinical Applications of Blood-Derived and Marrow-Derived Stem Cells for Nonmalignant (Autoimmune) Diseases [also lists relevant clinical trials and overall results summary on page 4]

Multiple Sclerosis Treatment with Adult Stem Cells

Stem cells to treat MS - MSRA Public Lecture - A/Prof Richard Burt

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Shortly following some of the initial work done by Dr. Burt, Dr. Richard Nash, a noted immunologist at the Fred Hutchinson Cancer Research Center in Seattle (where early bone marrow transplantation was pioneered in the US in the late 1960’s) also became interested in HSCT as a means to treat autoimmune diseases. He has already completed several studies and a phase I clinical trial (separate from Dr. Burt’s work). He is currently running a myeloablative HSCT phase II clinical trial (all patients have already been treated) called HALT-MS (listed below, and is also substantially similar to the same treatment protocol that I received). He will soon be starting the randomized phase III clinical trial for the myeloablative (BEAM) protocol.

Dr. Richard Nash, Immunologist, Fred Hutchinson Cancer Research Center, Seattle:

Bio / profile:

Patients with autoimmune diseases are finding success with treatments originally developed to fight cancer

And an excellent overview of the MS treatment they have developed (and which I received). . . Stem Cell Transplantation in Patients With MS in the HALT Trial

And a peek into (Feb 2011) update on the clinical status of a few of the typical patient's status (that basically says that all MS disease activity & progression continues to be stopped four years following the transplant procedure):

And a top level overview of the total (phase II) post-treatment population:

An older paper that reflects the much earlier (and is now less relevant compared to the current phase II/III clinical trial data) work that I provide for historical purposes - High-Dose Immunosuppression and Hematopoietic Stem Cell Transplantation in Autoimmune Disease: Clinical Review

HALT-MS phase II clinical trial - High-Dose Immunosuppression and Autologous Transplantation for Multiple Sclerosis (HALT MS) Study

HALT-MS clinical trial website:

Neurology Reviews – Can Immune System Transplants Halt MS?

By the way, here is a nice (short) video of Dr. E. Donnall Thomas' Legacy of being the first pioneer to successfully perform bone marrow / stem cell transplantation on human beings for treatment of cancer at The Fred Hutchinson Cancer Research Center in Seattle. He deservedly won the Nobel prize in Medicine in 1990 for his work in this field that has directly led to to HSCT for auto immune disorders:

Dr. Burt’s approach is lymphoablation with autologous HSCT transplantation. Dr. Nash’s approach is myeloablation with autologous HSCT transplantation (the protocol I received). The University of Louisville is currently doing a phase I/II study of myeloablation with allogeneic HSCT transplantation with mixed chimerism (i.e. mixing & infusing of differing amounts of both donor and recipient stem cells together for grafting). All three phase II studies in the US to date have already completed all patient transplantations and no one has died as a result of the procedure. Now that the treatments are complete the lengthy & involved follow-up work is being done now to evaluate the patient outcomes. This will of course take several more years until final reports are published. All these programs have already designed the phase III studies and have submitted the program plans to the FDA for approval. Currently Dr. Burt's MIST program in Chicago is in active randomized phase III patient selection & treatment with others coming online soon.

University of Louisville Phase I/II Clinical Trial - Donor Stem Cell Transplantation (with variable mixed chimerism [mixing both donor and recipient stem cells together prior to engraftment]) for the Treatment of Multiple Sclerosis

There is also a stem cell transplantation study in Ottowa, Canada completed by Dr. Mark Freedman that is currently closed because it has completed treatment of all planned study participants, but currently treats (Canadian) patients outside of clinical trial work. This is an especially relevant scientifically-oriented study because it incorporated a very important control (randomized) arm in the study:

Clinical trial info: Autologous Stem Cell Transplant for Multiple Sclerosis (MS/BMT)

[Dr. Mark Freedman on] MS and Stem Cells: Time is brain in MS

Ottowa Hospital-sponsored stem cell & transplantation lecure video: MS and Stem Cells: It's happening right now

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And there is also clinical treatment being conducted in Australia by Dr. Colin Andrews at Canberra Hospital that is also using a BEAM treatment protocol:

Canberra Hospital cures MS?

Mother Carmel Turner is first Australian woman to undergo stem cell transplantation for MS (an especially wonderful story because HSCT allowed her to walk again after having been confined to a wheelchair for the previous two years):

Mum's [Carmel Turner] amazing recovery from MS

Finally, I Can Be A Mum (overview story of Carmel)

Carmel Turner's website: Carmel Turner Adult Stem Cell Treatment for Multiple Sclerosis

And here is Carmel Turner's You Tube video channel where she has posted videos regarding her HSCT (and just like myself, she appears to be very happy to no longer take medication to treat her MS since her undelying MS disease activity has stopped)

Teen walks after MS stem cell treatment

Stem cell treatment reverses effects of MS

Other information of relevance (in no particular order):

Early highly aggressive MS successfully treated by hematopoietic stem cell transplantation (HSCT)

[I especially appreciate this statement from this specific report. . . "Before HSCT, 61 relapses occurred in 82 patient months; during follow-up, one relapse in 289 patient months." If you need a slap in the face of the reality of HSCT to cure MS, here is a scientific study report that confirms the data]:

No proinflammatory signature in CD34+ hematopoietic progenitor cells in multiple sclerosis patients [this well-authored paper goes on to make the important conclusion "Our results support the use of aHSCT for treatment of MS."]

Autologous hematopoietic stem cell transplantation in multiple sclerosis [includes HSCT treatment results for both relapsing and progressive patients]

Autologous HSCT for severe progressive Multiple Sclerosis in a multicenter trial: impact on disease activity and quality of life

Hemopoietic Stem Cells Safe, May Reverse Neurologic Disability in RRMS

Autologous Hematopoietic Stem Cell Transplantation for Autoimmune Diseases

Immune ablation and stem-cell therapy in autoimmune disease: Clinical experience

Immune Ablation and Autologous Stem Cell Transplantation for Aggressive Multiple Sclerosis: Presented at ECTRIMS

Intense T cell depletion followed by autologous bone marrow transplantation for severe multiple sclerosis

Bone Marrow Transplantation Study Update: Participants Treated in Study to Stop MS Progression

New hope for MS sufferers - Ottawa doctors to try bone marrow transplants to treat debilitating disease

Bone Marrow Transplant Shows Promise for MS

Study of bone marrow stem cells in multiple sclerosis

Immune ablation and stem-cell therapy in autoimmune disease Introduction

Barry Goudy, successfully treated with adult stem cells for Multiple Sclerosis testifying in front of a United States Congressional hearing on the use of adult stem cells:

Stem cell transplantation in multiple sclerosis: current status and future prospects

Clinical and MRI outcome after autologous hematopoietic stem cell transplantation in MS

Aggressive multiple sclerosis – is there a role for stem cell transplantation?

A brief article summarizing the results of a phase I HSCT clinical trial that focussed treatment of progressive patients with high EDSS scores.

MS Researchers Share Progress at Annual ECTRIMS [European Committee for Treatment and Research in Multiple Sclerosis] Conference (October 13-16, 2010)

High Time for HiCy?

Stem Cell Transplantation Clinical Study Data for Historical Perspective

Data out of Russia that provides a good overview of HSCT stratified by MS disease type (which indicates good efficacy for all types of MS cases):

Rebooting the Immune System [with Cyclophosphamide]
Autologous hematopoietic cell transplantation for multiple sclerosis: a systematic review

Stem cell transplantation for autoimmune diseases

Three strategies of Autologous Hematopoietic Stem Cell Transplantation in Multiple Sclerosis

Autologous haematopoietic stem cell transplantation for secondary progressive multiple sclerosis: an exploratory cost-effectiveness analysis

Autologous stem cell transplantation for progressive multiple sclerosis: Update of the European Group for Blood and Marrow Transplantation autoimmune diseases working party database

Patient-Reported [Quality of Life - QoL] Outcomes in Multiple Sclerosis Patients Undergoing Autologous Stem Cell Transplantation

The Lancet
publisher contacted me to ask if I would include a link to their website publications portal regarding MS (and neurological issues in general). The Lancet maintains sound scientific standards and ethically responsible publications and I am happy to list thier website publications portal link for your perusal (and they also list technical articles for hemotopoietic stem cell transplantation for MS relevant to my own blog). Also as explained by the publisher, "Your visitors will be able to listen to free podcasts for author interviews and expert discussions covering international issues relevant to (MS) neurology. Here, individuals can learn more through our direct links to free resources such as reviews, opinions, and news throughout the Lancet online community.". . . .

Last tangential note. . . . . 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 consider seeking the same transplant procedure myself to cure it:

- Rheumatoid arthritis
- Scleroderma (Systemic Sclerosis)
- Inflammatory Bowel Disease (Chrohn's disease, ulcerative colitis)
- Systemic Lupus Erythematosus (SLE)
- Polymyositis - Dermatomyositis - 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
- Sarcoidosis
- Ankylosing spondylitis
- Stisff Persons Syndrome (SPS)
- Diabetes mellitus type 1 (but only if HSCT is performed within several months following disease onset)
- Sickle Cell Disease can be cured with a similar HSCT procedure utilizing mixed chimerism with a partial-match HLA doner

Dr. Richard Burt On the topic of HSCT as curative treatment for a wide range of autoimmune disorders:

If you know someone with one of these diseases you may want to let them know about the possibility of a hematopoietic stem cell transplantation procedure as a means to arrest/correct/reverse the progression of the disease so they can make up thier own mind regarding treatment options.