HSCT: WHAT IS HSCT?

WHAT IS HSCT? – A COMPREHENSIVE DESCRIPTION

With HSCT currently gaining a lot of attention in the main stream media for its huge success in giving people with MS new hope and the epic possibility of totally halting disease progression, more and more people are asking: what is hsct? HSCT stops MS!  HSCT or Hematopioetic Stem Cell Transplant,  is the only existing scientifically proven treatment, currently available that completely halts disease progression of Multiple Sclerosis. It is not a new procedure as such, as it has been used to treat cancer since the 1960’s, but it is a relatively new treatment for MS. Perhaps ‘new’ is the wrong word – The first HSCT performed specifically for an autoimmune disease (uveitis) was performed in 1985 by Prof. Shimon Slavin in Israel. The patient remains cured today. The first HSCT performed specifically for MS was at George Papanicolaou General Hospital, Thessaloniki, Greece in 1995. However, there were many observational case studies before then focusing on the success of HSCT for MS patients that were transplanted for cancer who simultaneously had their MS  halted,  as an unanticipated side effect of the treatment. All of the early studies that followed, also clearly established the now (well understood) probability  that transplantation earlier in the disease life cycle is more beneficial than transplanting later in the disease evolution, when there is a greater degree of irreversible disability. Dr Burt at North Western University, Chicago, started HSCT treatment back in 1996. Prior to that, while he was a Fellow working at Johns Hopkins Hospital in Baltimore,  he noticed that the leukemia patients he was treating  needed to be “re-vaccinated” because the protection from childhood diseases like the measles and mumps was being lost. The cells affected by  transfusion treatments were losing the “memory” of these original childhood vaccinations.
“Maybe,” thought Dr. Burt, “if we could get bad, diseased cells to lose their memory, we could reprogram them with ‘good’ memories and help patients with autoimmune diseases.” This reprogramming would depend on adult stem cells—tiny building blocks found in the body–if it was going to work.
He first tried out his idea on animals in the research lab and—it worked!  Not long afterwards the FDA gave its approval for the adult stem cell therapy to be used on people suffering from Multiple Sclerosis, and again, it worked.  Now, 14 years later, Burt and his team of researchers at Northwestern University are using this technique to help treat patients suffering from some 23 different diseases. There is no ethical dilemma as the treatment uses adult stem cells extracted from the patients own blood, and no embryonic stem cells are involved.

Because the procedure involves the use of chemotherapy the treatment is not the most comfortable and is unfortunately quite expensive. That said many who have completed the procedure successfully attest to the fact that it is not unbearable by any means, and the chemotherapy part of the procedure is a short targeted dose that lasts for days as opposed to cancer treatments which can drag out over a much longer period. Indeed it is very different from the chemo used for cancer patients altogether. One should bear in mind that when cancer patients undergo chemotherapy they are more than likely very sick going in to the procedure and therefore would experience a greater degree of discomfort than someone relatively fit except for MS. Please refer to the blog links page to read first hand accounts of how individuals who have been treated already dealt with the procedure and how it has affected them. Please see: http://www.hsctstopsms.com/how-hsct-works/.
What cannot be denied however is that to date HSCT is the only scientifically proven treatment that STOPS underlying disease progression  in all types of MS and restores normal immune self-tolerance and produces lasting curative symptomatic improvement for the majority of MS patients. To date over 2,000 patients have been treated world wide, and the number continues to rise daily. It is important to mention here, that where you can go for treatment and whether you qualify,  is determined by a variety of different criteria. We aim to help clarify your options and help you to decide the best place to apply for your own treatment.
While this treatment is standard procedure for treating cancer patients (thousands of patients are treated annually), it is not standard treatment for people suffering from Multiple Sclerosis. There are a very small number of facilities Worldwide currently performing this procedure for MS. The type of MS that you have also plays a part in treatment; see – http://www.hsctstopsms.com/types-of-ms/. The hope is that more will open in the early future as the demand increasingly continues to outweigh the supply, and that the cost of being treated will reduce accordingly, as the protocol efficiency is optimized. (Please refer to the menu item entitled “Choosing a facility” to learn more).
Many who have already had HSCT say that one of the best parts of being treated is that halting the underlying disease progression of MS gives them back a future. George Goss, who had HSCT in  2009, an inspirational pioneer in promoting HSCT after he underwent the procedure in Heidelberg five years ago, describes this as “pure gold”.  (Please see his blog:  http://themscure.blogspot.co.uk/  and check out his HSCT forum on Facebook: Hematopioetic Stem Cell Transplant – MS & Autoimmune Diseases, where he has provided invaluable information and support for those seeking HSCT). Living with MS is both frightening and uncertain. Little is known about what sparks rapid disease progression with no warning. One can go 10 years with little or no symptoms and then suddenly find oneself in a wheelchair in the space of a few months. It has been described as a “Tiger that cannot be tamed”. HSCT removes this “Sword of Damocles” hanging over one’s heads and gives one  the gift of hope and the luxury of planning a future with loved ones. Unless you live with MS you can have no concept of how magic this prospect can be! (Please see “What it is like living with MS” in the menu.)

20 comments

  1. My friend’s brother has HSCT for MS. His EDSS is 7, his family tried to contact UK and Russia but they rejected his case, is it any possible for him to get a better treatment?

    1. Hi there. I am not entirely sure of your question? The UK would be unlikely to consider him for treatment anyway with an EDSS of 7. I need more information, such as whether he is RRMS or SPMS or what type he has, how long he has had it etc. If Russia turned him down due to his EDSS
      then the only other option would be Mexico. You can find the information for contacting them on the HSCT Facilities page. Good luck.

    2. He may have been denied for several reasons, one being hid EDSS score. Please have him go to the site in Mexico. They will evaluate him (through a Skype conference and his medical records) and then decide. The actual current price for treatment is $54,500. They have treated more HSCT patients than anywhere else in the world. I know this because my daughter is going to have this done as soon as we can raise enough money. Hope his is helpful and your brother can get this treatment.

      1. My daughter is 18. Shes was diagnosed when she was 13. The treatment is not available in South Africa. She has been on Copaxone, Betaferon and currently on Tysabri (2 years) She is still getting regular relapses and new, active lesions every time.

        How will we go about the treatment if from South Africa?

        I have just joined the FB group.

        1. Hi Antoinette,
          You can travel to any facility that offers HSCT. The best thing to do would be to contact each facility and ask their advice. Have you considered the Coimbra High Dose vitamin D protocol? There is also a facebook group for that if you would like to look into it. Good luck.

        2. Antoinette,
          Hi my name is Tony Rooney from Melbourne, Australia. I’ve had MS for 17 years; diagnosed on the day of 9/11. I’ve been on Rebif & Copaxone in the past but with the Tysabri, I had my 147th Infusion only last week. I’ve never experienced ANY side affects with any of these Infusions; not one. 18 is way too young to be dealt with this, this is very, very sad. What I wanted to say, is that a friend of mine had the HSTC procedure done a few years ago, she was in a bad way, she’s now been MS free for 8 years which is unbelievable. This has worked & I see it short of finding a cure for MS, this path seems to haave worked for friend – but with me or your Daughter who knows.
          The best of luck for you & your Daughter.
          Tony

  2. I am very interested. I’ve clicked the links but the right sides are cut off so I can’t read all the info about choosing a clinic or types of MS. Any additional information would be helpful. Is it possible to make an appointment with Dr Burke? Thank you, Nora Nicholson 860-437-1710

    1. I think the right sides are cut off because it is being viewed on an i pad or phone. It is all fine on a lap-top. I need to look into why this is happening and possibly get a plug in to correct it. However I am unsure about Dr. Burt’s requirements. Please go to face book and join this group “Chicago HSCT Stem Cell Transplant Study – Official Patient Run – Dr. Burt” Here you will be able to get information and advice on his protocol and treatment parameters . Good luck Nora.

  3. Can someone contact Mr with info regarding the Stem cells. I want to get it performed. I have MS for 13 yrs and am 35 yrs old. Thanks
    Angie

    1. Hi Angie,

      If go to “HSCT Awareness” on Facebook you will find many people who have been treated and who are waiting for treatment dates. There is a wealth of knowledge, information and advice available. Good luck.

  4. Ik wil HSCT gaan doen in India.Ze zijn pas deze maand opgestart.
    Hun protocol zou hetzelfde zijn,als in Chicago
    Maar,zij werven eerst stamcellen en dan chemo.Andere protocollen eerst chemo en dan werven stamcellen.
    Is dit oke ? Kunnen ze dan geen slechte B- en T- cellen werven,die niet gezuiverd zijn of doen ze dit buiten het lichaam ??
    Baart me toch een beetje zorgen.

    1. Hi Ellen,

      I know you from the HSCT forums. I understand your concern. They sat that they use methlyprednisalone before harvesting the stem cells. They do not freeze them. They are given back after the ATG has finished. The ATG has a half life of 72 hours so will still be active in the body when the stem cells are returned.
      The ATG will then eliminate any rogue T cells that are left. This is what they claim, although until we see how people do on the protocol in India we do not know for sure. It sounds realistic, but we will just have to wait and see.

    1. Hi Sandy, I know that a lot of people advocate the use of cannabis oil. It is also a lot more readily available than it once was. If you have any links to help people check out the possibilities, please do post them so that we can all look into it. Thank you.

  5. My wife just celebrated her 1 yr stemmie bday a.few.weeks ago. 🙂 She had the HSCT procedure done by Dr. Burt of Northwestern in Chgo. It’s a life saver! Before the procedure, she was at wits end after trying out most of all the mainstream medicine treatments that failed her. She is a now a new person and her MS halted. Her recent MRI’s show proof of the successful results. Lesions on her brain that were once active, no longer active and some even shrunken. No new lesions. And just recently on her 1 yr MRI, lesions on her cervical spine on her neck DISAPPEARED after being there on previous MRI’s. Truely a miracle! If you or someone you know is suffering from MS, share with them the great news of HSCT, in particular the procedure done at Dr. Burt’s of NorthWestern in Chgo. You can view my wifes HSCT journey via our FB group (Team Karisko) I created for her. We want to pay it forward and spread the good news about HSCT and help other lives with MS. God Bless.

    1. Hi Mark, thanks for letting us know about the success of your wife. Just curiously how old was she when she received the treatment and was she RRMS? It is always lovely to hear positive up-beat stories about HSCT and its success halting MS. Congratulations to you both and thanks for sharing! 🙂

  6. On St Patrick’s Day fifty years ago, I woke up immobile from the neck down. Doctors diagnosed multiple sclerosis and told me recovery was impossible, to get my affairs in order, I didn’t have long. But I fussed and maneuvered until I fell on the floor where I dragged myself in a crawl until my body started to listen to me.
    Three months later I returned to work as a junior laboratory technician at the Ontario Veterinary College, Guelph Ontario. I spent my lunchtime in the library looking for research on healing, with researchers nearby to explain the significance of animal research in the scheme of human medicine.
    Soon I found an article with full colour electron microscope photographs proving that damage to the myelin covering of nerves in the spinal cord heals with movement (Bunge et al, 1961). It can be argued that untrained, I could not possibly understand; however, in my ignorance I read research literally.
    I learned about undifferentiated cells that float through the body, waiting for instructions to become cells required for repair and maintenance. The instructions arise from the effort to engage in customary activities! Today these cells are named stem, and research isn’t sure how they work!
    In an embryology text I read how during development, the white matter or myelin, in the motor part of the spinal cord, develops as the brain assumes control over basic reflexes, such as the fetus kicking. In other words, movement promotes formation of myelin!
    In the 21st Century we are excited by neuroplasticity and healing, but no one seems to know how this process can be initiated. As long as we believe that we cannot move, the body has no directions for healing. Where is evidence-based medicine when you need it?
    After waiting twenty years for the system to apply this research, I wrote about my experience of recovery in, Black Patent Shoes Dancing With MS © 1989. I continue to follow research and am amazed at the number of times others try to take credit for being first to prove myelin can repair itself.
    How much evidence do we need? Since I found Mary Bunge’s research in 1967, I didn’t worry about my future. I knew no matter what happened, I could always recover. I am now 73, and fully mobile, and I intend to dance til the day I die.

    Diagnosed in 1967 at age 22, Eva Marsh found evidence that recovery is possible and did not accept what the system had to offer.

    As a single parent she has raised her two children, completed degrees in Physics and Electrical Engineering, done Neuroscience research and worked in industry as a Computer Systems Analyst.

    Eva has spoken to many about her life experience and the research that enabled her to recover and live life as she chooses. She continues to follow research with a wary eye in her search for constructive information.

    Organizer 2005 1st Ever MS Recovery Roundtable
    McMaster University Alumni Gallery 2004
    Woman of the Year in Health and Fitness 2003

    REFERENCES
    Bunge Mary B, Bunge RP and Ris H (1961) Ultrastructural Study of Remyelination in an Experimental Lesion in Adult Cat Spinal Cord. J Biophys Biochem Cyto 10:67?94. J Cell Biol since 1962.

    Patten Bradley M (1958) Foundations of Embryology, McGraw-Hill Book Company Inc, New York London Toronto p351.

    Faber-Elman A, DL Hinschberg, M Marikovsky and M Schwartz (date?) Dept Neurobiol The Weizmann Institute of Science 76100 Rehovot Israel – Bidirectional crosstalk between injured nerves and invading inflammatory cells appears to play a role in regeneration. Migration of astrocytes across the site of injury is thought to be needed for regeneration of injured axons. In vivo this migration is correlated with the invasion of inflammatory cells into the injured nerve.

    Rasminsky M (1981) Hyperexcitability of Pathologically Myelinated Axons and Positive Symptoms in Multiple Sclerosis. Demyelinating Disease: Basic Electrophysiology, Edited by SG Waxman & JM Ritchie, Raven Press New York.

    Ledford Heidi (2015) Bioelectric signals spark brain growth. Nature 10 March, doi:10.1038/nature.2015.17087.

    1. Hi Eva,

      I have approved this comment as this site is here to help everyone with any information that may be useful in treating MS. I find this very interesting and I will read your book. It is not clear however from your comment how you treated yourself? Was it with any particular type of exercise or how did you go about it? I am sure others would be interested.Thanks for reaching out! 🙂

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