First of
all, Tina Stahmer is currently fund raising to get HSCT
treatment for Ms.
Tina
Stahmer
Tina is
from NSW, Australia. Australia has currently stopped access to
HSCT treatment for Ms. There is a resumption date but delays in
access to treatment impact the success of the treatment. Tina
has applied and been accepted for HSCT treatment for MS in
India with Dr Amit. We congratulate her community, that have
rallied around her to assist her with fund raising efforts.
Tina has
still not achieved her fund raising goal. As we are personally
involved with Tina and Andy we wish to bring attention to their
fight.
Her
treatment will occur early in December 2012. Tina's
disease/disability is aggressively progressing and HSCT will
Halt her progression of Ms.
Donations
‘Something
for Tina’ Bendigo Bank (Australia) BSB: 633 000 Acc: 146 882
576, or visit her website
Explaining
how this breakthrough and treatment is as important to 80 plus diseases of the
autoimmune system. I am contacted regularly by patients of other autoimmune
disease and asked if this site could be applicable to them...and in short... Yes
it is!
I have included a scan copy of
my latest MRI (in my recovery section below) showing that my lesions are
shrinking.
1.International
treatment options page and added fund raising page on the 28/07/2011
17:00 PM. India 40k, Israel 75k, Germany 78k.
This website is still a
work in progress.
********************************
Hi I am Carmel Turner.
I am one of the few lucky MS people to receive Autologous HSCT (Autologous
Hematopoietic Stem Cell Transplantation)
treatment for Multiple Sclerosis. I received this treatment over
a 3 month period, September - November 2010 in Canberra,
Australia.
I was diagnosed in 2009 after the birth of my daughter in 2008.
In total, it took nearly 10 months to be diagnosed after
noticing significant gait in my walk since my child’s birth. By
the time I was diagnosed I had an extremely aggressive form of
RRMS with progressive disability or at the initial stages of
secondary progressive MS. I was having a relapse every 3 months.
In 18 months I went from a normal able individual, to a person
that could not take three steps without holding onto a four
wheeler walker that I used at home. When my child was learning
to walk I was losing my ability to walk. When I went out in
public I was in a wheelchair.
When I truly understood how quickly I was progressing and what
were the limited approved treatments and their limited capacity
to alter the disease progression particularly once the disease
became progressive. I knew that I would need to search for
upcoming treatments. I did not just rely on my neurologist to
supply me with information. I researched every possible avenue
for treatment of the disease and its symptoms. I would then
discuss them with everyone including my neurologist.
My primary source of information was
http://clinicaltrials.gov/ and sages medical journal. I went
to the search portal on the clinical trials web site above and
typed the disease MS, located a registered trial on a particular
treatment and located the published review of the trial in the
listed medical journals.
At the time my father in law had a friend that was being treated
for leukaemia. Due to this I knew of the acronym for HSCT and
the basic concept that the treatment destroyed the immunity
system and rebuilt it from new.
Eventually through this activity, I came across DR burt’s work
that lead myself to ask my neurologists about HSCT treatment for
MS. My neurologist informed myself that the treatment was
intrusive and held very little benefit. He said he had been to
Germany to observe the treatment, I later discovered he had been
to the X-cell center in Germany that does not do the treatment
that I was referring to. I then found Dr Burt’s website with all
the contact information and patient selection criteria. At the
time I was preparing to contact Dr Burt, I saw a news flash
about a young man in Canberra called Ben Leahy having the
treatment that I was considering at the time. The news flash
gave just enough details so I could track down the treating
neurologist in Canberra Australia. I sent my patient history and
MRI’s to the doctors and I was later approved to receive
treatment in 2010.
Results of treatment have simply been beyond words.
I no longer take any MS medication. Only HRT oestrogen.
MRI's have confirmed disease activity has stopped.
My Disease is in remission (I say remission not cure, BIG
difference)
When compared to a 18 month old MRI. My current MRI
has fewer lesions and no new lesions have appeared since
treatment.
My appetite is normal again.
My EDSS score went from 6.5 - 7.0 down to 4.0 -4.5 so I am
no longer wheel chair dependent and walk without aids.
My Incontinence has gone.
My MS Bladder is gone (where you sit on the toilet for 2
hours waiting while at the same time busting for a pee)
My Pain has gone. No more crying myself to sleep.
I am Driving again.
My cognitive abilities and memory have gone back to normal.
My strength in my upper and lower limbs are improving.
My Intolerance to heat has disappeared
My quality of life has improved beyond words.
I am living life and enjoying being a mother to my child
again.
I have set up this website to empower Ms suffers (and also 80
other autoimmunity disorders) and their loved ones with
difficult to locate information. Here is all the information
that I have discovered by my research relating to the treatment
that I received for Multiple Sclerosis. This is mostly to help
those, like myself, who do not have 5 years spare to wait for
the currently running US FDA trails to come to completion and
the treatment to be FDA Approved treatment for MS.
I had progressed to an EDSS score of 7.0 in two years, death has
a score of EDSS 10. When I did not have time to spare I
encountered several road blocks to gaining access to credible
information on treatments under clinical trials and also a lack
of understanding about the different types of stem cell
treatments by support resources that MS patients traditionally
turned to. I hope resources located on this web site reduces
those road blocks for others and provides them with a real
alternatives that they may not have been previously aware of.
To date around the world, there have been up to 600 people with
MS that has received autologous HSCT treatment under controlled
studies. Those studies have shown up to 86% of the patients with
MS responding to treatment by achieving complete remission in
their MS disease for periods greater than a decade. The
treatment resulted in halting all activity of the MS disease in
patients that previously experienced regular relapses. Those who
responded to treatment, have also had some reversal of
neurological damage and physical disability caused by the
previously active MS disease. On average, disability improvement
is between 1.0 and 3.0 in their EDDS score over a three year
period after treatment.
Even more exciting than the success rate of those treated in
these trials achieving remission, is the fact that patients with
the worst prognosis that have been shown to be unresponsive to
approved therapies are the patients that respond best to
treatment. In fact most of the trial data is based off patients
that fit into this category of MS. The patients that were in the
5 per cent with the so-called malignant and aggressive form of
MS, the patients that needed a wheelchair within five years of
diagnosis.
The fact that
there is only 600 treated in the infers that this treatment is a
new discovery. Which could not be further from the truth. The
only thing new or cutting edge is giving this treatment to MS
patients.
HSCT treatment is not cutting edge nor a new discovery. The HSCT
treatment that is used to treat MS, is an established and proven
treatment that is currently used in hospitals around the world
as a standard procedure to treat 15 different diseases including
leukaemia. The procedure was invented by a French oncologist in
1959 on five workers whose own marrow had been damaged by
irradiation caused by nuclear accident at research facility in
Yugoslavia.
The procedure was first successfully done in a western hospital
in 1968. Since then the treatment has been revised as new
technology emerged within the medical field and new practices
adopted. This has had a significant impact on treatment related
fatalities. On average 50,000 HSCT treatments are performed each
year, every year, around the world treating the 15 approved
disease for the treatment.
The links below are of the general history of HSCT for all
diseases. The fatality rates relate to all diseases except for
MS as it yet approved.
If I had a different disease, a disease that HSCT is approved
for, I could have this treatment, 15 minutes down the road from
where I live, payed by my health insurance. As a standard
treatment for those diseases.
Unfortunately even though this is a proven and established
treatment for 15 disease, the trials for this particular
treatment for MS patients are still occurring. The phase I
trials started in 1996, those trials have now progressed to the
last double blind phase III trial that is required before this
treatment will be covered automatically under US Health
insurance. This will probably take another 5 year period for the
trials come to an end and another 5 years before the treatment
to be used regularly by US neurologist at a time that their
patients have progressed enough to justify such a treatment.
These trials specifically compare Tysabri treatment
effectiveness over an extended period time to slow MS activity
to HSCT treatment results of halting all disease activity.
In America, the HSCT treatment I received is currently
progressing through two separate FDA trials using two different
types of HSCT treatment. The trials are in Seattle (HALT trial)
or in Chicago(MIST trial). The trials started in the early
1990’s and have completed both Phase I and Phase II FDA trials.
The trials use slightly different versions of HSCT treatment.
Seattle HALT trial uses a myeloablative chemotherapy protocol
while the MIST Chicago trial uses a non-myeloablative (or
lymphoablative) chemotherapy protocol. Both achieve the same end
result of rebooting the immunity system but through changing the
chemotherapy the treatments reboot the immunity system in a
different manner. The non-myeloablative protocol is less toxic
and less aggressive. A simple analogy using the PC reboot of the
two approaches would be that myeloablative switches off the
power to the HDD,CPU and memory concurrently and them switches
them back on. While with the non-myeloablative shuts the system
down sequentially by powering off the HDD and when turning the
power back onto the HDD, turning the CPU off and etc. Through
this method one part of the system is powered on during the
reboot. Both methods achieve the reboot but through different
approaches and one is slightly less aggressive in its approach
but achieves the same end result.
After 16 years since its beginning, the Chicago MIST Trial has
started the final phase of trials, a double blind Phase III US
Government FDA trial's which will see this treatment covered
under US health insurance in five years for people with MS. Once
this occurs, the treatment I received will become available to
US neurologist as an US FDA approved treatment. This will
hopefully result in Australian Neurologist's acknowledging the
white elephant in the room.
From an article of an earlier form of HSCT, HYCY that is also
called Revimmune, HYCY is similar to the current methods used by
Dr Burt in his current Phase III trial. The first time they
started to use this type of HSCT treatment to attempt to treat
auto-immunity disease was in 1977 and the Dr's involved at the
time had started to form some idea that HSCT could treat MS and
80 different immunity diseases back in 1977, that are still
today considered as untreatable.
As you will learn from further below there are several different
types of stem cell treatments. The stem cell treatment I had is
very different type of stem cell treatment to the type of stem
cell therapy that is on offer through one day surgery centers
that operate as stem cell clinics in Germany, China and Panama
that use unproven MSC stem cell therapy.
The treatment I received involved collecting stem cells from my
own body. This is then followed by a large dose of chemotherapy
to destroy the bone marrow and clean out each component of the
entire immunity system including killing all the T-Cells in the
body. The Immunity system is then rebuilt. This occurs by
infusing the previously collected stem cells and regrowing new
bone marrow. This new bone marrow slowly starts producing new
t-cells that does not have the MS disease. The entire process
from beginning to end effectively reboots your immunity system.
Effectively restoring the patients immunity system back to a
point in time, of auto immune self tolerance, the period of time
in the patients life prior to MS being active. For a detailed
description of my entire procedure please click on the left hand
panel or here,
BEAM step by step.
I have filmed my whole procedure and placed it on You Tube. I
have
direct links to the videos on the link at the top of this
page. These videos show the whole treatment from beginning to
end. I did this so others can see first hand what the treatment
was like. It is an intense treatment and should only be done
after a considered choice.
Another reason for the video's was to show that the
chemotherapy is the majority of the treatment. It is
the underlying reason for remission of MS in Autologous HSCT
treatment that took myself 12 weeks to receive. This will
hopefully show people what the one day stem cell clinic's in
Germany (X-Cell Center), Panama, Argentina and China do not
perform during MSC therapy that involves collecting the stem
cells and re-infusing them on the same day without any
additional therapy. MSC therapy and HSCT treatments are
significantly different treatments that achieve significantly
different outcomes. MSC therapy is also new treatment and a new
form of stem cell treatment that has not completed phase I
trials. HSCT treatment is an established treatment in modern
medicine used for cancer patients and has been under trial for
MS treatment since 1996. MSC therapy requires multiple
treatments at $30,000 a session for results yet to be confirmed
by phase II trials while HSCT treatment is a once off treatment
that requires no further treatment for established results for
two separate US FDA phase II studies.
The treatment that I had is a very specific type of stem cell
treatment that involves chemotherapy that requires to be an in
patient of a hospital. No clinic has the facilities or the know
how to perform HSCT which is in effect a Bone Marrow
Transplant and needs BMT facilities. HSCT treatment only
occurs in state run hospitals that has in patient care
facilities capable of caring for a person when they are anaemic.
The treatment result of HSCT has been shown to be repeatable in
halting all MS disease activity and halt the progression of the
disease in its tracks. The only aim of the treatment is
to halt all MS disease activity. The absence of disease
activity creates a the respite that the body needs for
disability improvement that is on average, an improvement of the
EDSS score of the patient between 1.0 – 3.0 EDSS points over a
three year period. The stem cells in the treatment do not
contribute at all to disability improvement or repair nerves as
stem cell clinics would like to infer. The only role that the
stem cell’s play in the HSCT procedure is to grow a new bone
marrow that produce t-cells that no longer attack the myelin
sheath. The treatment is in effect a Bone Marrow
Transplant (BMT).
Trials so far indicate remission periods greater than 10 years
in patients who’s disease was so aggressive that they have been
documented by multiple neurologist as to not to respond to any
known treatment, who also previous to HSCT treatment,
experienced multiple relapses a year resulting in sever physical
and cognitive disability in a very short period of time.
US Gov FDA Safety Phase I Trials for HSCT treatment of MS began
in 1995 and successfully completed and US Gov FDA curative
effectiveness Phase II started in 2000 that saw the treatment
changed by lessons learnt from the phase 1 trials by removing
TBI therapy from the treatment that was found to undermine the
long term curative result of the treatment it also added
significant risk to treatment, when TBI was in use the average
fatality rate was 10-15%, after TBI has been removed the
treatment the average fatality rate at treatment centers for
HSCT reduced down to less then 1% (0.8 at one of Europe’s
largest cancer treatment hospitals, Germany Heidelberg
University hospital that treats 200 patients a year using HSCT
and is one hospital offering this treatment to people with MS).
The last phase of trial process of the USA FDA have began in
2012, this trial is the last that needs to occur before your
local US neurologist can offer HSCT treatment to later stages of
RRMS as an alternative to Tysabri or for SPMS, an alternative to
Novantrone® (mitoxantrone) to their patients.
This is the last trial that needs to occur for the HSCT
treatment for MS can be covered by US health insurance. The US
Gov FDA Phase III double blind comparative study to current
treatments (Tysabri) is the last trial that needs to occur
before the general MS population has access to the treatment
that has been shown to be the only treatment that is capable of
modifying the disease course and reversing existing physical and
neurological damage.
When current US trials come to a conclusion over the next 5
years, and when the treatment is released in the US that results
in remission periods of over a decade for 86% of those treated
in the US, it will be short period of time before the general
release and usage of HSCT by Australian neurologist. I cannot
imagine a situation were only US citizens have access to the
only known treatment for MS to show such success in effective
treatment for patients that were previously considered to be
untreatable.
Economic benefits to the community of treated MS patients are
realized through the discontinuation of lifelong immumodulator
drugs after treatment. These immumodulator drugs are very
expensive and at minimum cost 12 k a year. One of the drugs,
Tysabri, cost 35k a year to the PBS scheme, creating a
demonstrable saving of 350k in medical prescription cost over a
10 years period after treatment. Most experience substantial
reversal of their pre-existing symptoms, something that cannot
currently be repeated with current therapeutic approaches.
Current selection criteria, targets a narrow window
in the progression of the disease cycle. There is a limited time
when this form of treatment can be considered. You may be in
that narrow window today. In 5-10 years time when this treatment
will be released, you may no longer be in that window. I had a
very aggressive form of MS that resulted in myself becoming
wheel chair bound (EDSS score 6.5 progressing to 7.0) within 2
years of diagnoses. I cannot emphasis enough how close I was
being told "sorry, if you came to us sooner". In a very short
period of time after diagnoses, I almost became to far
progressed within the disease cycle to be considered for HSCT
treatment. The longer and more ingrained the damage is the less
likely that HSCT will reverse the condition. Trials target those
at the end of RRMS and at the beginning of SPMS. Those that have
multiple relapses in a year. To qualify for trials you need to
demonstrate that you have tried and are unresponsive to all
currently approved FDA treatments including tysabri.
If I relied on traditional sources of information about
treatment options I would have not been aware of this treatment
option let alone the exclusion criteria that I almost failed.
I hope to steer those away from stem cell treatments that give
false hope. If a person Google's "MS stem cell" you will be
presented with false hope via advertising for stem cell china,
x-cell treatment center, holly hubber south American stem cell
clinics, colostrum products. All of these presented options are
money down the drain and are scams. Some of these corporations
have started to setup charities that present information about
stem cell treatments then tell you that their products are apart
of the selection criteria. Or simply having their products on
the same page informing readers about legitimate research along
with products infers some sort of creditability to their
products. One of these charity that are nothing more than a
marketing front for scam treatments is;
To see my current recovery please click on
Current Recovery in the Left hand panel.
I am contacted by people around the world seeking treatment and
others that have already received treatment. I am also in
contact with people who are currently or about to start
treatment. Through this little community, I have learned how
people are gaining access to treatment here in Australia and
around the world. I have also meet people that have had the
treatment a decade ago here in Australia and also in the US.
Both of whom have not relapsed since treatment.
You can contact me at carmelbturner@gmail.com
or find me on the face book group HSCT for MS.
There are legitimate treatment options overseas to gain access
to AHSCT for MS (Including the US, China, Israel and Germany).
The legitimate treatment centres are all in public hospitals
oncology departments that usually treat cancer patients. NOT
private stem cell clinics. Some of these legitimate sources of
treatment are currently running USA FDA phase III trials or are
treating international patients. Click here to go to
International treatment options and trials.
I had my treatment here in Australia. It was covered and payed
for by Australian Medicare that is limited to Australian
citizens. For details of that please click on the link at the
top or here
gaining access to treatment in Australia.
The scientific Evidence of HSCT for MS
This treatment has been established by nearly a 100 independent studies around
the world repeating the same results. Up to 600 people have now been treated in
separate trials around the world with an average success rate of 86%. I have links below to the largest studies of registered peered review studies.
If you would like further scientific material please refer to George Goss
scientific reference library for neurologist and patients. George has spent a
considerable amount of time cataloguing all peered review scientific journals on
this subject and quite simply is second to none.
George Goss HSCT Research Reference Library for Neurologist's
and Patients
Since starting this web site a year ago. There has been a huge amount of
activity around HSCT for MS. I continue to work with people trying to obtain
treatment here in Australia and overseas. This consumes at least 2-4 hours of my
time every day. I have been involved in peoples fund raising efforts to gain
access to treatment overseas. I have done public talks at rotary events. Explained the treatment and how they can get involved.
MS Society Australia growing Support of HSCT for
MS that
is showing promising
results
The HSCT trials in Perth that started after Dr Andrews in the ACT treated Ben
Leahy. This trial is being run by Dr
Bill Carroll, the chief scientific advisor to the MSRA and treating neurologist.
The MSRA also announced a $500,000 grant to establish a registrar of all people
that have received HSCT for Multiple Sclerosis in Australia.
The MS Australian (MSA) Society has this year (2011) re-printed an article from 2008 about HSCT
showing promising results for MS. For those that missed it, the link is below.
The article does not
explain how to gain access to treatment or any mention of the success so far
here in Australia. There is no mention of Dr Colin Andrews treatment success of
100% of treated patients. Also, no mention of Dr Bill Carroll and the trials in
Perth and their success rate. Both trials are 100% funded by Medicare and the
article infers otherwise. At Least though MSA acknowledge the benefit from this
treatment. They are starting to educate people of its existence and fund some
research through a registrar of those that have received the treatment. This is
a huge step forward from the Australian MS society previous position. I congratulate the
Australian MS Society in progressing down the path of helping those
that they represent by informing them of a treatment existence. This policy
change of MSA is now reflective of those MS societies in the US and Europe where
one of their members have this treatment, they acknowledge and publish the fact.
They also publish in their magazine/website and where to locate their blogs of
their experience. This enables those with MS in those countries to be educated
about this treatment.
The brain center in
Melbourne presented a lecture about myself and the other three (Ben,Che,Michael)
that were treated in Canberra. The
lecture held for 250 neurologist/neuroscientist specifically about
HSCT treatment for MS at Canberra hospital. The brain center in Melbourne have
in total 600 neurologist/neuroscientist, with 50 support personal
at the Royal Melbourne hospital and another 50 admin staff. It is the largest
brian
research center in the southern hemisphere. This is the facilities that
is connected to the royal Melbourne hospital which did the 2001
study into HSCT for ms, the first trial in Australia. .
The MSRA held a public forum on
HSCT treatment for MS. The panel included Prof Trevor Kilpatrick of the
previously mentioned Florey Neuroscience Institute.
Date: Saturday 29th October 2011 Time: 9.30 am – 12 noon Venue: Jasper Hotel, 489 Elizabeth Street,
Melbourne
Program:
Time
Topic
Speaker
9:30am
Registration
10am
Welcome
Mr Jeremy Wright MS Research Australia
10:10am
MS Research Overview
Dr Lisa Melton MS Research Australia
10:30am
Stem Cell Therapy for MS
Prof Gianvito Martino Universita Vita-Salute San
Raffaele, Milan, Italy
I have a new friend in the UK
called Stella and her husband Marc. Stella is currently going through treatment
and is detailing her experience in a blog on the MSRC web site and national
magazine.
Norway/Sweden has started treatment
of a lady named Hanna Vesterager that had to hire a lawyer and fight for her
right for treatment. Hanna has setup an appeal and has a Blog of her current
treatment.
Hanna has been released from
hospital and is now back at home. I have yet to talk to her but it appears she
had minimal complications. It is still early days and she is only just starting
to recover from a very intense treatment. The MS society in Norway has links to
Hanna's blog so those that they represent are educated about this procedure.
The MS Society of Norway even contributed to her personal appeal and encourage
others to do so.
The
head researchers main hope with this research would above all, destroy
hysteria around treatments that a lot of people are making a lot of money, from
selling false hope to the most vulnerable.
This
research proves that MS root cause is a genetic disorder. Environmental factors
effect the genetic floor that later triggers a Immunity disease called Multiple
Sclerosis. That Immunity disease MS, is then further effected by environmental
factors. These factors impact the speed on the rate of acceleration, on the progression through the disease
cycle. The MS disease Cycle begin with benign MS, then progress to RRMS followed
by RRMS with progressive disability and then SPMS . Diet exercise, Vitamin D,
Epstein-Barr virus are external environmental factors that may impact the
progression of the disease but their use or management will not reverse or manage this
aggressive disease.
As a
treatment, no amount of Vitamin D tablets will go to the
extent of halting the progression of the disease and reversing neurological
damage but can have a small effect on regularity of exacerbations and
progression in early part of the disease cycle. Modern medicine has a greater
ability to manage the disease and no medical profession would recommend relying
on vitamin D alone, unless you are determined to prove your ideology of choice
and prepared to take responsibility for the inevitable outcome. Once the disease has
progressed to RRMS with progressive disability of an Edss score of greater than
4.0 these external factors management have
little impact beyond that of a placebo. Also modern medicine has lost control to
the disease and is fighting to regain control that has proven to be rarely
regained with current medications.
The
research also indicates that those with these genetic markers are more receptive
to subtle changes in environmental factors, such as vitamin D. So if two sisters/brothers
growing up in the same house, with the same diet and the same location in the
world, they will result in two different out comes. As the genetic disorder present in
only one of them effects that persons ability to absorb Vitamin D at lower
sunlight levels. Two of the 57 genetic markers effect Vitamin D absorption.
Due to the
identification of the genes, scientists will also be able to more clearly define
those environmental factors as with the 2 of the 57 genetic markers involve
vitamin D absorption. Ms people will not necessary have all 57 genetic markers,
which in turn will identify what environmental factor could be the trigger for
that individual. They also believe that there are more genes to be found. This
science has not been completed but beyond doubt, a large step has been made. It
was only four years ago when they only had identified two genes common in MS'ers,
so one can see how quickly this science is being established.
A great analogy of
this research is, genetics loads the gun and a single or multiple random
environmental factors pulls the trigger that creates a disease of the immunity
system called MS.
This research also
explains why those with MS are more likely than an average person to have
multiple autoimmune disease.
This research also
indicates that more than 80 disease are also treatable with Autologous HSCT
treatment that would result in a remission in the disease and an Allogenic HSCT
treatment will result in a life long cure of the disease. This research
indicates that if certain combination of environment factors exist along with
certain genes of the 57 genes (not everyone will have all 57 genes), will result
in a disease such as Diabetes type 1 Lupus or another combination environment
factors trigger with certain genes will result in Autoimmune Gastritis.
If I had one of
these diseases I would be contacting the same Dr's in Australia and also the
treatment centres listed on my international option pages. The only other option
is to wait for the 20 years for this research to conclude if you believe that
you will not progress further into the disease cycle that may prevent these
treatment's from being effective.
Diabetes type 1
(Lupus), is one of the trials that Dr Burt is trialling in a Phase II study with
HSCT treatment. Dr's previously understood that 80 autoimmune diseases are
interrelated, these perceptions were based through general observations of the
similar behaviour and similar treatments between the diseases. Now scientist and
Dr's have solid science to explain why these diseases are interrelated along
with a reason why patents with one autoimmune disease is more likely than others
to have multiple autoimmune diseases.
Phase I and Phase
II study of Type 1 Diabetes Lupus with HSCT treatment.
Dr Burt is also
conducting research with the following diseases using similar HSCT treatments to
address each disease. If your disease is not listed does not mean that it is not
treatable with HSCT, Dr Burt has targeted those diseases that get the most
attention.
Also a link to
Professor
Graeme Stewart radio interviews explaining these concepts, who is one of an
eleven-person team leading this global study of twenty-seven-thousand people
across fifteen
countries that
resulted in these breakthroughs.
In the interviews
not only are autoimmune disease's that root cause is genetic but also HIV
infection, that also after infection has a genetic component. Articles that
relate to this is below.
If I had one of
these diseases I would be contacting the same Dr's in Australia and also the
treatment centres listed on my international option pages. The only other option
is to wait for the 20 years for this research to conclude.
Future possible Developments of this research
The MS genes
discovery are significant not just for MS. Since MS is a disease of the immunity
system it relates significantly to other immunity diseases. Type 1 diabetes,
Lupus, thyroiditis are all about to hear of progress with their diseases.
Scientist researching these disease, now know what to go look for as their
disease symptoms and mechanics are similar to MS.
Hopefully
the first thing we see in our GP office as a result of this established science,
is a blood test for MS. Those who test positive will not necessarily develop the
MS immunity disease but will give them advanced warning that they are highly
prone to developing the disorder. It would also be a huge piece of mind to love
ones of those diagnosed with MS. Does my child or my sister have MS, would be
answered before the disease disorder and the damage is detectable in MRI scans. There
are already blood tests being developed that not only detect MS but what stage
of the disease cycle the patient is at and predict disability increase.
This
research brings us closer to a cure than ever before.
We are now able to test if a person has an underlying genetic floor that
eventually results in the immunity disease MS turning onto its host. This will
enable quicker diagnoses but also confirm who should be a chosen as genetic
compatible donor for future Allogenic HSCT transplants which I go into detail
further below.
The treatment that
I received
Autologous
Hematopoietic
Stem Cell Transplantation (Autologous
HSCT) is the closest treatment to a cure that is available in Australia or overseas with
an acceptable risk. The risk is a 1% fatality rate. The treatment involves
collecting stem cells from the patients own body before a large does of chemo is
given to the patient, to destroy that patients immunity system. The immunity system
is rebooted by regrowing the bone marrow, the heart of the immunity system from the previously
collected stem cells.
The result of this
treatment is
the patients immunity system becoming antigen naive. Antigen naive means, all
the memory of the immunity system that it has gained over your entire life since
birth, such as chicken pox that you gained at the age of 5, is removed from your
immunity memory. All the memory of your immunity system is wiped and started
again from scratch. This also removes the memory of MS from your immunity system.
At one stage in your life, your immunity system decided that your myelin
sheath was a foreign body that needed to be destroyed. Your immunity system is
restored to the state it was, when you were a new born baby, before you had MS.
This form of
treatment places the MS disease in the patient into remission. It does result in
a small change in the underlying genetic code, but is unlikely to remove all of
the 57 elements of the genetic code of the MS genetic disorder. The treatment
according to research will result in the remission of the disease for 10, 15
years or a life long change. There is a chance of relapse due to the genetic
code that caused the disease in the first place is still present.
Even though
this treatment is not a cure, it is the only treatment that has been proven
through separate unrelated trials to place the disease into remission. The
result of these trials prove that remission is a repeatable event for the vast majority
that receive treatment. Due to placing the disease into remission, the body has
the opportunity to repair the neurological damage caused by having the disease.
I strongly recommend others to consider Autologous HSCT, as it is the only
treatment that is proven to place the disease into remission with an acceptable
risk. Since treatment I have gone from a wheel chair to walking and starting to
lead a normal life. Alleluia.
It has been proven
time and time again through several small peered review registered trials to
halt all progression and activity of the disease. It gives the human body the
reprieve from the disease it requires, to repair the damage the disease has
done. Currently large scale FDA Phase III double blind studies are currently
occurring. That will see this treatment covered under US health insurance.
Progression may occur again due
to the genetic floor still being present. If relapse does occur, due to the Immunity
system being reset back to a point in time, of at first of being in a self tolerate state of
the MS disease (benign MS), then to the beginning of the cycle of early
relapsing remitting MS. Patients are in a far better position than before
therapy. This is due to conventional therapy has better established record of
responding to these phases of the disease cycle.
The patient that
had previously progressed in the disease cycle and have deteriorated despite
treatment. That patient will be more
likely to respond to conventional therapy after a relapse that occurred after
HSCT treatment. As a result of the HSCT treatment the immunity system has been restored
back to a point in time, to a state of having the upper
hand on the disease. Patients that previously had aggressive and unmanageable
diseases would be more likely to be, no longer be beyond help.
I have recently located a presentation that was made by the US HALT study in
Seattle. The US Halt study is an official phase II FDA trial with the exact same
treatment that I received. It is a executive summary of their observations of
the Phase II trial and their own conclusions of what the results indicate. They
cover both positive and negative results. It also
speculates on future direction of treatment once more data
collaborates current assumptions and also when other treatments obtain an
acceptable risk. Which i go into further in the below section Allogenic HSCT
treatment.
Another treatment
Allogenic Hematopoietic Stem Cell
Transplantation will result in changing the underlying genetic
code as well as remove the memory of MS from your immunity system.
AllogenicHSCT is a similar operation to Autologous HSCT.
The immune system is rebooted. Firstly by destroying your immunity system through chemo therapy.
Then your immune system is
"rebooted" by growing a new bone marrow through stem cells.
The main difference is who they harvest stem cells from. This treatment harvest stem cells from
a genetically compatible donor and those stem cells are used to grow the new
bone marrow in the recipient patient. Due to recent breakthroughs of identifying
genetic markers of MS the genetic compatible donors can now be screened to
ensure they do not re-introduce the disease.
This
treatment differs to mine as my Autologous HSCT, harvest's the stem cells
from the patient themselves. This treatment, has a
significant risk associated with it and that is the only reason why I would not
recommend this treatment for MS. The death rate is between 10%-30%.
Problem's occurs after the bone marrow has been created.
The new immunity
system can identify, the new recipient patients body as a foreign body and starts
to attack it. This scenario is refereed to as graft vs host disease (GVHD). This
is the primary reason why this form of treatment has a fatality rate of 30%.
If
the patient does not develop GVHD or it is successfully treated, they then need
to take anti-rejection drugs for 2-3 years. This is to ensure their body does not reject the
bone marrow, that is effectively another persons bone marrow. After 2-3 years,
the genes from the donor and the genes of the patient effectively blend into a
third person. This removes the need to continue the anti-rejection drugs. This state
of becoming effectively a third person at a genetic level by having two peoples
genetic code blended into a new person, is referred to as
mixed chimerism.
This would result in a significant large change
in the underlying genetic code of the patient that would have a high likely hood
(not guaranteed but highly likely considering the scope of change to the genetic
code) removing the underlying genetic floor that caused the disease. This will
occur along side with removing the MS disease from the immunity disease as in my
treatment.
The immunity system would be cleaned out and rebooted with the newly
grown bone marrow. This would remove the MS disease (the faulty anti-gen
immunity memory
of MS) from the immunity system. Also, the underlying genetic code that
created the faulty immunity system in the first place, it would be the most
likely cure the MS disease. It will achieve the same as my treatment but remove
the possibility of relapse as the root cause has been removed. Even though I
believe that this form of treatment is the cure for MS I would not recommend
people perusing to cure their MS with this form of treatment due to 1 in 3
patients die.
There is research as we speak that promise to
change things. There is a new method of this treatment that takes stem cells
from the donor and patient. These collections are mixed before placing them back
into the patient. This new form of treatment promises to reduced the death rate
down to 1 in a 100 similar to the treatment that I have. Until this is proven
through trials with a greater population of 3 patients, I would not recommend
this form of treatment. I do though recommend people keep track of it as it
holds so much promise. The good news is since I had a Autologous HSCT treatment
I have the time to wait for science while living life MS free.
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. Phase III trials are planned for 2014
The bottom
line is "they" know what the cure for MS is, they are just refining the method of
delivery so it is safe for the general population of MS'ers. Now that they know
what 57 genes to test for, they can prove it.
As an
interesting side note "they" also beginning to understand what the cure for HIV AIDS is,
it is the same treatment that will cure MS. The Cure for HIV was discovered the
same way as the cure for MS was discovered. A patient with HIV also succumbed to
leukaemia, one of the 15 diseases approved for AHSCT treatment. Unfortunately
for HIV sufferers there is only one case of a HIV infected patient receiving
treatment and all current conclusions and selection criteria is based off this
isolated individual. The history of the development of HSCT for MS shows that as
more individuals are treated, there is greater amount of data to draw
conclusions from and as a result, future patient selection changes. There is no
follow up study planned. Instead this case is dismissed in favour of a
pharmaceutical managed therapy, just as it is for MS sufferers.
HIV
sufferers are at the beginning of the 30 years of medical bureaucracy that has
prevented the development of the cure for MS. Like MS sufferers, HIV positive
patients only hope to gaining access to treatment within the current orthodox
medical practice, is to contract leukaemia or one of the other 14 diseases
approved to have access to AHSCT. HIV sufferers are at the beginning of arguing
those down that know what is best for them, by denying them treatment under the
same argument used to deny MS sufferers treatment, the treatment is too intense
while ignoring how intense the disease itself is and the lack of quality of life
that results from that disease.
The treatment
that Timothy Ray Brown (also referred to as the "Berlin Patient") received was an allogenic HSCT operation, where the donor was proven to be
naturally resistant to HIV.
The UK have
announced trials into
Mesenchymal Stem Cell (MSC) therapies. This type
of stem cell procedure is very different than those mentioned above. They have
been used by stem cell clinics around the world as they require little skill and
are a one day procedure that does not require the patient to be booked into
hospital.
As a consequence they have little costs for the
operator and can be very profitable. The results of these therapies can be
easily misconstrued into something they are not. As a result I have been very
sceptical and reluctant to present any information around these therapies. I
have been quite frankly disgusted by people promoting MSC as a cure. They are
telling people that MSC therapy can cure them of MS and it's symptoms. I hope
one day there are legal consequences. The manner that
these private operators (such as the X-Cell center) and people like Holly Huber
that support MSC as a cure, are simply dishonest. They are saying
anything that can mislead a person to secure another dollar. They have set back this
type of legitime treatment by selling it as something it is not...a cure for MS
or a treatment that can reverse MS.
MSC therapy
does not attempt to treat the underlying disease. It does notattempt
to halt the activity or progression of the disease. It attempts to repair the
damaged done by the disease. It attempts to rebuild nerve damage and
to some degree start remyelination of the nerves. The therapy results in
improvement in EDSS scores, that can be used to infer by unscrupulous operators
that they have reversed MS and MSC therapy is an effective treatment of MS.
However, the slick marketing of these institutions fail to point out that as
soon as the patient experience an MS exacerbation / relapse, those improvementsareshort lived. Depending on the individual's stage of the disease cycle,
attacks could occur at 5 years intervals or as in my case before I had
autologous HSCT treatment every 6-12 weeks. So this therapy, does result in EDSS
improvement until your next attack, which as in Holly Huber case, invites you
back to spend another 40k or until your bank balance runs out. Since holly has
done such an effective job of marketing these operators she is either on their
pay roll or receiving a significant discount on her inevitable next
treatment. Unless you address the underlying disease any benefit of this therapy
will be short lived.
There are
currently no approved treatments available to help repair damage caused by MS.
This type of UK trial is vital if these type of treatments are to become a
reality.
My treatment of
Autologous HSCT, has seen benefits in my EDSS score. The improvement in my EDSS score was the result of removing the
MS disease from my immunity system. It did not remove the underlying MS genetic
floor and hence I could relapse. As a consequence, I tell people what I believe
is true and that is my disease is in remission. Only a Allogenic HSCT operation
could have a chance of doing both. That is remove the disease from the immunity
system, along with the genetic floor.
The Autologous
HSCT resulted in my immunity system no longer attacking my body. Nerve rebuild
and
remyelination of the nerves are a natural process if MS is removed from the
immunity system. This was demonstrated by my intolerance to heat disappearing
overnight. When I received treatment,
it was during the
Australian summer where 40 °C days are not uncommon. I wore
a cooling vest and air conditioning on 24/7 before AHSCT. Now I do not use air
conditioner until my husband and daughter need it. There is though a limit to what the natural process will achieve and MSC
treatment could be a legitime option if it is backed by legitimate Phase I and
Phase II trail research data as we are starting to see in the UK. My EDSS score
was 7.0 it has reduced to 4.0 in less than 12 months. Research indicates my EDSS
improvement will
plateau after 3 years and I am looking at
options when the natural process has had the opportunity to achieve its full
potential. Considering what I have already achieved in 12 months I am optimistic
of what the next 2 years will bring but keep a keen eye on legitimate research.
The UK trials are
replicating what is already occurring at the Cleveland clinic in the US.
These MSC trials
involve collecting the
Mesenchymal Stem
Cell from the patient's own bone
marrow. This is probably done surgically aspirated from the pelvic bone, but
they may also do it by using a mobilization drug (G-CSF) and then perform PBSC
collection from the peripheral bloodstream. The collected MSC's are then
replicated (culture expansion) ex-vivo (out of the body) over a period of 1-3 months to create a
substantially large MSC population. This population would be in the
neighbourhood of 1-2 million stem cells per kilogram of body weight. The result
of this effort is then re-infused back into the body.
The Cleveland
method is being used in a trial being conducted in Israel by two state hospitals
under the direction of Dr. Dimitri Karussis.
The results are not negative but not positive. This I believe is due to
patient selection. You can see that some patients have irregular exacerbations
and some have regular exacerbations. Keep in mind that all these trials are at a
Phase I trial phase, where they are proving safety rather than curative
efficiently of the procedure. I hope that either the Phase II trials or the
recently announced UK trials introduce a anomaly in the data by having a patient
that has received HSCT treatment.
Where to get HSCT treatment.
MS Society
continue to state that they do not recommend anyone to seek treatment outside
clinical trials. I understand this position, considering how many snake oil
salesman that are out there willing to take advantage of people by selling a MS Stem
Cell treatment, that has no chance of treating their current stage of the disease
cycle.
In
fact, 95% of the results of a Google search on MS Stem Cell will return results
taking readers to treatment center's that are a scam operators. They are selling
treatments with very clever marketing. Unless you know what you are looking for,
most likely you will taken advantage of. So we fully understand MS Society
recommendation.
At the same time though, we feel denying people information of
where the legitime treatment center's are, is equally unethical. In doing so,
playing part in sealing peoples fate by turning the other cheek.
We strongly
recommend our fellow Australians to contact either of the two doctors providing
trials here in Australia. Click on the link above or here,
Gaining Access to treatment here in Australia. Keep
in mind both Dr's are attempting to establish the treatment here in Australia
and are cherry picking patients that are 100% certain to prove this treatment
effectiveness.
They have strict guidelines to achieve these goals. I
have attempted my best, to recall my treating Dr's selection criteria. Those
considering AHSCT should not self diagnose. It is better to let the Dr rule you out,
rather than yourselves and miss your spot. In addition, you
should take into consideration, that we have heard from 3 of the 9 patients from
the Perth trial, that the waiting list is at present 2 years
for approved patients.
The MS Society
states that all should participate in controlled trials. As I understand this
position, I am not supportive of it. I strongly recommend that
other's attempting to gain access, first attempt to gain access here in Australia
and then consider overseas treatment.
One warning in doing so, even though the
current Phase III trial in Chicago fits within the MS Society recommendations,
the treatment costs 157k for approved patients. To be approved you must have
meeting with Dr Burt and you MUST have a MRI in his hospital that
cost 8k. He has refused to look at MRI's done at other hospitals even if they
meet his criteria and are less than 2 weeks old.
There is travel and
accommodation costs on top of this. The sad truth is, Burt rejects the majority of
candidates. This is due to the fact he is cherry picking patients that will
prove his treatment is successful. Those who are approved, then
must sign legal commitment to return for 5 years, having 5 MRI's (that cost
8k) so Dr Burt
can show his success of the treatment he has developed.
Due to this, we do
not recommend him. Although his trial, fits into the MS Society
definition of appropriate treatment. Dr Burt is a necessary evil though, as the
trail he is completing, will result in this treatment being released in the US
and hopefully here in Australia.
We have on our
International treatment options page
hospitals (one of which is the leading cancer institute in Europe that performs
this procedure 200 times a year with a 1% fatality rate, no hospital in Australia could claim these
success and number of patient's treated). They consider patients free of charge
through emailing patient history and appropriate MRI's for consideration of
approval.
The patient has 95% of decision after this consultation through email,
and require a final meeting with the doctors before getting the 100% approval.
The patient does not pay anything towards treatment until approval is given and
they are half the cost of any US FDA approved trial (and hence MS Society
approved overseas trial). These treatments though are costly but are half the cost of any
trial in the US.
As my husband and
I were desperate for AHSCT, especially with a little one, this was definitely
plan B for us. This information took a great deal of research to find and we are
passing on what we have learnt from these efforts. This was due to not being
supplied it from the MS Society or treating neurologist.
We believe people
should involve their families and loved ones. Watch my videos and you will see
it is an intense treatment not to be taken lightly. I do not believe taking
patients decisions for them, by hiding and denying information. In acting in
such a manner, I would be partly responsible for their fate, if they were not
given the information to decide for themselves. Once again, this is about
empowering the Ms sufferer and their loved ones. So much power is taken from us
with this disease. It is about time, more power is given back to us for a better
quality of life, Alleluia.
There are as
mentioned, 600 people that have had HSCT for Ms. Some of them keep a blog, in
their endeavours to gain treatment and educate people of AHSCT and their recovery after treatment. Here are
some of them.
The
undisputed best blog of HSCT for MS is that of George Goss
There is another gentleman,
David in the US that has had the same procedure as myself that runs an excellent
forum for MS people in the US called Active MS'ers
