I live in the US. I'm 53 years old and very active intellectually.
I've been variously diagnosed with Secondary Progressive MS and spinal
cord injury (a C5/6 fusion and clearing of the C5/6 level foramen (of
calcium spurs) was performed 2 years ago). The surgery seemed to stop,
but not reverse, the very rapid advance of the symptoms - which are
largely right-side-of-body weakness, and specifically lower-right-side
weakness - especially the right leg, which is very weak. I now walk
with crutches except for short distances around my home. (Clear
symptoms began about 6 years ago and slowly progressed.) The spinal
fusion surgical team was composed of top people from Cedars Sinai in
Los Angeles. The surgeon told me that, because the constriction of my
spinal cord was in the neck, it was uncertain if I would recover my
mobility and strength even with a successful outcome. Prior to the
surgery he requested a spinal tap, which showed the presence of a very
small number of white blood cells that might indicate the presence of
MS (which was the position of another group of neurologists). The head
radiologist for Cedars examined my MRI's (which showed very vague
'glowing' in the neck region, perhaps indicative of potential lesion
presence) and stated flatly "if this man has MS it is NOT responsible
for his symptoms". Still, as time goes by I continue to loose strength
very slowly. A well-known MS diagnostician at UCLA told me last year
that he 'has no doubt that I have secondary progressive MS'. That
said, I watched him toss out diagnostic data left and right that
didn't fit the MS picture (For example, I regained near-normal
strength in my legs for a single day two years ago. His explanation? A
shrug.)

While I've experienced some brain-related losses in the past (brief
troubles with vocabulary and very slight slurring of speech, both of
which passed in a few days or weeks) the patterns have been unlike the
'classic' MS patterns. I've tried Copaxone, which left me nearly
bedridden with weakness after about a week of injection - to the
consternation of the MS docs. I've been tested for Lyme, 'Stiff-man
syndrome', and Arnold's Chiari (which appeared, to my neurologists, at
various times to be better fits to my symptoms) with no positive
results.

So here I am. I began self-injecting HGH about a year ago with the
clear result that my overall well-being improved and the speed of
progression of symptoms slowed. (My neurologist noticed and now
approves.) I'm buying time until another treatment can be found. After
looking at the early emerging data, it looks as though stem-cell
injection (even only into the bloodstream, rather than the CSF) might
reverse these hard-to-define neurological symptoms. So my question is
threefold.

1/If there are fresh ideas as to what exactly I may be suffering from
I'd like to hear them and follow up on examining them. 2/Assuming that
this is MS, or a now-corrected spinal cord compression, is there a
place to get early stem-cell treatment that is free of conventional
risks like HIV infection that holds promise for brain and/or cord
regeneration? 3/And finally, where (and for how much) might this
treatment be obtained?

I'm open to experimental academic programs as well as to legtimate
offshore clinical ones.

Thanks for your time.

Hello whitemarks1,

  You have certainly been though a lot, haven?t you? Thank you for
providing a thorough history with which to work!

  You probably already know that secondary progressive MS evolves from
relapsing MS, and that relapsing MS can go into hiding, rear it?s head
and go into remission again. Attacks come more frequently with the
secondary progressive stage, and the recovery is not as complete as it
was in the relapsing stage. I won?t go into the physiology of the
disease itself as you seem very well informed, but I have provided
numerous references near the end of the answer for further reading.


1) "If there are fresh ideas as to what exactly I may be suffering from
I'd like to hear them and follow up on examining them"
========================================================================

You also probably know that there is not one specific, definitive test
for MS. To properly diagnose MS, other conditions are ruled *out*. You
have already ruled out several conditions. Tests such as an LP, MRI,
visual evoked potentials (VEP), along with physical symptoms, and a
complete neurological exam can add to the diagnosis criteria. MRI can
also easily rule out Arnold Chiari malformation, which, before the
days of MRI was often misdiagnosed. You said ?For example, I regained
near-normal strength in my legs for a single day two years ago?
Symptoms vary from person to person, and in severity in the same
person. The fact that you had almost normal strength in your leg for a
day would not be unusual. Every thing you have mentioned is
descriptive of MS, but only your doctor can establish your diagnosis
with certainty .
http://www.msif.org/en/ms_the_disease/diagnostic_tests.html

If a protein electrophoresis was run on the cerebrospinal fluid (CSF)
from your LP (Lumbar puncture or spinal tap), it may have showed
distinct proteins called oligoclonal bands.  The presence of
oligoclonal bands can help rule out other diagnoses while supporting
the diagnosis of MS. ?Oligoclonal bands in the CSF are very common in
MS, but are also seen in a smaller proportion of patients with a
variety of infections and inflammations of the nervous system which
need to be looked for, if felt indicated, in an individual case.?
http://www.medhelp.org/forums/neuro/archive/872.html


Other new areas of research. Harvard, Yale, UCSF and others share what
is new with their MS research. Harvard?s new blood test appears very
promising, and may help to determine for sure if what you have is MS:
?At the Harvard Center, we have been testing new blood tests and have
discovered an increase in a chemical called IL-12 in the bloodstream
of MS patients, especially when their disease becomes more
progressive. The development of this new blood test has been a very
complicated process and requires the latest technology. The technology
involves a special cell sorter machine capable of analyzing 10,000
cells per minute. We have successfully perfected this technique and
are using it to measure responses before and after treatment and are
testing new chemicals.?
http://www.erasems.org/center_research_update.html


Progressive Multifocal Leukoencephalopathy can appear as MS, and also
affects the myelin sheath of nerve cells. ?Symptoms of PML include
mental deterioration, vision loss, speech disturbances, ataxia
(inability to coordinate movements), paralysis, and, ultimately, coma
reflecting the multifocal distribution of brain lesions. In rare
cases, seizures may occur.?
http://www.ninds.nih.gov/health_and_medical/disorders/pml_doc.htm

Acute Hemorrhagic Leukoencephalopathy
http://path.upmc.edu/cases/case102.html

Another condition that strips the myelin from nerves cells is Central
Pontine Myelinolysis. All of these, andother leukodystrophies can be
distinguished from MS by the aforementioned tests and exams.
http://www.emedicine.com/neuro/topic50.htm



2) "Assuming that this is MS, or a now-corrected spinal cord
compression, is there a place to get early stem-cell treatment that is
free of conventional
risks like HIV infection that holds promise for brain and/or cord
regeneration?"
========================================================================

You stated ?Assuming that this is MS, or a now-corrected spinal cord
compression ? Keep in mind that ?Sclerosis? means ?scar tissue?, and
that it becomes plaque or lesions in the brain and spinal cord, quite
possibly causing your spinal cord compression in the first place. (I
am not saying this DID cause the compression, but that it may have
contributed to it.)

About Copaxone: Copaxone seems to reduce disability, but not the
progression of MS.  ?Since it may be difficult to distinguish between
certain common symptoms of MS and some side effects of glatiramer
acetate, be sure to consult your health care professional if an abrupt
change of this type occurs.?
http://www.nationalmssociety.org/Meds-GlatiramerAcetate_m.asp

http://www.healthtalk.com/multiplesclerosis/programs/022802/page05.cfm

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11997066&dopt=Abstract

?Glatiramer acetate did not show any beneficial effect on the main
outcome measures in MS, i.e. disease progression, and it does not
substantially affect the risk of clinical relapses. Therefore its
routine use in clinical practice is not currently supported. More
investigations are needed. Further research should also develop more
reliable measures of patient disability over time and include quality
of life among primary outcomes.?
http://www.update-software.com/abstracts/AB004678.htm


Stem Cell Therapy:

Keep in mind that stem cell transplant therapy for MS is in its
infancy, and not without possible serious risks. In a study of 26
advanced stage MS patients at Washington Medical Center, 20 patients
became stable, 6 improved, 3 of the patients experienced severe
infections, and one died. (More on this study below) Another study
showed that patients with mild to moderate disability scores (EDSS
less than 6) showed greater improvement than those with higher EDSS.


 Stem cell therapy, the kind used for MS, is also known as HSCT
(hemopoietic stem cell transplantation) or autologous stem cell
transplantation. Because of your fear of HIV, not to mention
hepatitis, CMV, and other infectious agents, you will be glad to know
that ?autolgous? refers to using cells form  your own body! Autologous
transplants are much, much safer than allogeneic (from a donor)
transplants.  Not only does this reduce risk of transmitted infectious
disease to nil, you banish any compatibility problems! (Not only group
and type, but white cell antigens known as HLA can cause
incompatibilities in transplants, even stem cell transplants, unless
the stem cells are of fetal (embryonic) origin).
HLA antigens (human leukocyte antigens)
http://www.nlm.nih.gov/medlineplus/ency/article/003550.htm

The process, simply described, involves injections of GCSF
(granulocyte colony stimulating factor) to cause your body to produce
many stem cells.  Blood will be taken from you, the stem cells
removed, and the blood returned to your body, using  a pheresis
machine. You will then be given chemotherapy and/or radiation to
destroy the T-cells and other components in the bone marrow that 
comprise the immune system. The stem cells that were harvested from
you previously are given back, via an IV, into the bloodstream. (I
have read that researchers have injected manipulated stem cells into
the cerebrospinal column of mice, but found no evidence that this is
being done in humans). The stem cells migrate to the bone marrow,
producing daughter cells that evolve into specialized cells meant to
restore the immune system and repopulate the bone marrow, hopefully
with cells that are free of the MS-causing culprits! Until the stem
cells graft well, you will be susceptible to infection and bleeding
for several weeks to a few months. Since this can be life threatening,
you will be instructed how to avoid infection by hospital staff. This
may involve staying in the hospital for an extended time, staying
home, very frequent hand-washing, wearing a mask when around others, 
and avoiding children and sick people. The process is not without
risks, and currently the success rate is not great. Perhaps in the
near future, fetal stem cells may prove to be more successful, as
fetal stem cells are not yet specialized as adult stem cells are.
Fetal stem cells, known also as embryonic cells (ES) are often called
?The mother of all stem cells?. Fetal stem cells are more versatile,
can live much longer than adult stem cells, but are ethically
controversial. Research is ongoing, on both forms of stem cells
however.

??Bone marrow transplantation, or more properly ?hemopoietic stem cell
transplantation? (HSCT), involves a completely different therapeutic
path than one for replacement of damaged brain cells,? said Dr.
Stephen Reingold, director of the Society?s Research Programs. ?It is
an attempt to cure a disease by replacing a malfunctioning immune
system with one that might function normally.?
?The stem cells used for these procedures are harvested from a
person?s own blood or bone marrow or sometimes from a donor, if a
genetically compatible donor can be found. The concerns regarding
other types of stem cells are not relevant to this therapy, since it
uses adult stem cells.?
The NMSS? stand on stem cell therapy: ?The Society?s scientific
advisors are optimistic about the potential of stem cells, but they
are also aware that there may never be effective treatments for MS
derived from stem cells. Our advisors note that new tissue generated
by stem cells might be exquisitely vulnerable to MS?as tempting as
fresh new buds to a foraging deer. Thus newly repaired tissue would be
eaten away again by the same damaging process. The first objective of
MS research is the quest to stop the immune system attack in MS so
that any potential therapy for repair?from whatever source?will not be
in vain.?
National MS Society
http://www.nationalmssociety.org/IMSOct03-StemCell.asp

?According to the presentation, 20 out of 26 patients in the study
appeared to stabilize. However, a longer period of observation is
required to know whether this stabilization will continue. One of the
study participants died from complications related to the procedure.
Previous experience with HSCT in persons with MS suggests that the
fatality rate ranges from five to ten percent?higher than that in
persons who have undergone this procedure to treat cancer. The risk of
fatality is what makes many physicians cautious about using HSCT as a
treatment for most individuals who have multiple sclerosis, because MS
is generally not a fatal disease.?
http://www.nationalmssociety.org/Research-2002Apr17.asp
http://www.stemcellnetwork.ca/news/articles.php?id=24


The American Autoimmune Related Diseases Association  says: The
American Autoimmune Related Diseases Association also cautions that
this treatment is not approved even as an experimental treatment for
autoimmune diseases and should be considered only in life-threatening
autoimmune diseases that have failed to respond to all other
treatments.?
http://www.aarda.org/research/research_display.php?ID=23


A not so favorable report on stem cell therapy for MS in this Oct.,
2000 report. ?Preliminary results of Phase I studies of HSCT in MS
patients have been disappointing. The mortality rate with this
procedure is approximately eight percent?a rate that is unacceptably
high. In addition, rates of disease progression are between 20 percent
and 25 percent following HSCT?a rate similar to the natural history of
the disease in patients who do not receive treatment for MS. Thus far,
the evidence argues against treating those with primary progressive MS
(PPMS) and those with an Expanded Disability Status Scale (EDSS) of
6.5. If HSCT is studied in patients with early-stage MS, it will take
at least five more years to know if treatment in this group makes a
difference. Further, this would be a difficult study to conduct with
such a high mortality rate, said Dr. Wolinsky.?
http://www.webhealthsearch.com/reports.asp?idreport=87&fn=whs-51-act-00-e


?Similarly, Dr. Richard Burt (Northwestern University, Chicago, IL)
and colleagues presented findings in 28 individuals, most of whom had
secondary-progressive MS that was worsening. They used chemotherapy
and total body irradiation to kill immune cells before the stem cell
transplants. They reported that those whose with mild to moderate
disability scores (EDSS less than 6) before the procedure tended to
stabilize, while those with higher disability scores tended to
continue to progress after the procedure. Dr. Burt also voiced concern
that the use of radiation to kill immune cells may also be causing
harm to brain tissue, and may be detrimental to long-term outcomes.?
http://www.nationalmssociety.org/Research-2003Apr15.asp

?Northwestern Memorial has pioneered stem cell transplants for this
and other devastating neurological disorders. Dr. Richard K. Burt, the
hospital's director of immunotherapy, performed the first procedure in
the U.S. in 1997. Based on the program's success so far, the National
Institute of Allergy and Infectious Diseases awarded the hospital a
$9.2 million contract for further research on stem cell transplants
for autoimmune diseases.?
http://www.chicagotribune.com/news/nationworld/chi-0206040150jun04,1,2838693.story

You may be interested in seeing this question: Singapore has become a
leader in the field of stem cell research.
http://answers.google.com/answers/threadview?id=301480

This article simply describes the procedure used for isolating stem
cells. (I had the pleasure of working with this technique as it was
being pioneered over 10 years ago, for breast cancer.)
http://news.bbc.co.uk/2/hi/health/1932977.stm


LONDON (Reuters Health) - Scientists announced plans on Monday for a
major trial of a controversial stem cell therapy in people with severe
multiple sclerosis (MS) who do not respond to conventional treatment.
The therapy involves removing and storing the patients' own stem cells
from bone marrow, then using drugs to knock out the immune system in
order to stabilize the course of MS.
The stem cells are transplanted back into the body to reconstitute the
lost blood cells. Patients have very few infection-fighting white
blood cells for the first 10 days and have to stay in an extremely
clean environment until the stem cell therapy takes a hold.
http://robby.nstemp.com/photo3.html

http://www.mult-sclerosis.org/news/Jun2002/RiskyStemCellTherapyForMS.html



3) "And finally, where (and for how much) might this
treatment be obtained?"
========================================================================
Cost:

It would be impossible to give you an exact cost, but I found two
figures, $85,000 and $100,000, and an estimate of $75,000 to $125,000.
Each patient?s case is unique of course, and such variables as
individual hospital and physician charges would be hard to predict.
$100,000 sounds like a reasonable ballpark figure.

 ?Sears was hospitalized for three weeks. The transplant cost $85,000,
and Medicaid paid. If resetting the young man's immune system stops
further damage from MS, the long-term costs of the disease would make
stem cell transplants a bargain.?
http://www.mult-sclerosis.org/news/Jun2002/RiskyStemCellTherapyForMS.html

?HSCT is also expensive, costing approximately $100,000.?
National MS Society
 
http://www.nationalmssociety.org/Research-2002Apr17.asp

?It is also expensive treatment, with costs estimated from $75,000 to
over $125,000.?
AARDA
http://www.aarda.org/research/research_display.php?ID=23



Where to find a stem cell transplant facility:
========================================================================

Following are people and institutions you may want to contact, to see
if you qualify for stem cell transplant or clinical trials:

Dr. George Kraft, a Harvard and Ohio State graduate, and recipient of
numerous prestigious awards.
Clinic: 206-598-4295
EMG/SEP: 206-598-4828 
Faculty Office: BB-933
Phone: 206-543-7272
Fax: 206-685-3244
E-mail:
ghkraft@u.washington.edu
University of Washington
Department of Rehabilitation Medicine
1959 NE Pacific Street
Box 356490
Seattle, WA 98195-6490
http://depts.washington.edu/rehab/contacts/kraft.html

http://www.championsofcourage.org/decade/awardwins/KraftG/KraftG01.html

http://www.championsofcourage.org/news/2004/2004Jan6GK.html
HUMAN STEM CELL   Dr. George Kraft and other investigators from the
University of Washington Medical Center, Seattle



Dr. Richard K. Burt
675 N. St. Clair, Galter 
14-100 Chicago, IL 60611 
Phone 
 312-908-0059
http://cgi.photobooks.com/scripts/troll.cgi?dbase=nmh&page=2&setsize=10&setindex=0&last=Burt&pict_id=0001013&new=1&keyword=

?Kruysman was just 29 when he diagnosed with M.S. From the start
--medication didn't work. Matthew's symptoms never let up --he was
either blind or partially paralyzed. So, he opted for a different
experimental treatment called stem cell therapy.
"The concept here is to go in and kind just destroy the immune system
and start all over with brand new stem cells and start a new immune
system," said Dr. Richard Burt, dir. immunotherapy, Northwestern
Memorial Hospital.
Northwestern Memorial Hospital in Chicago pioneered stem cell
transplants for M.S. and other neurological disorders. Researchers
here are beginning a new trial for M.S. patients who are not doing
well on medication --but have not yet suffered much disability.?
For information on the study, call Northwestern Memorial Stem Cell MS
Research at 312-908-0059.
http://abclocal.go.com/wls/health/071102_hs_multiplesclerosis.html

http://www.nmh.org/for_the_press/front_page/2003_10/story/st_2003_10_13.html


University of Cambridge, U.K.
?The Stem Cell Institute offers stem cell researchers the potential
for wide interdisciplinary collaborations in areas such as proteomics,
genomics, bioinformatics, chromatin structure, and gene regulation.
Moreover, both biologists and clinicians are active participants in
the practical applications of stem cell biology to human health.?
Cambridge Stem Cell Institute 
University of Cambridge 
CB2 2XY 
United Kingdom 
Tel: 01223 763366
contacts@stemcells.cam.ac.uk

http://www.stemcells.cam.ac.uk/
http://www.i10.org.uk/pooled/articles/BF_NEWSART/view.asp?Q=BF_NEWSART_105258


Clinical Trials:

Stem Cell Research Foundation
Stem Cell Research Foundation
22512 Gateway Center Drive
Clarksburg, Maryland 20871
1-877-842-3442
http://www.stemcellresearchfoundation.org/
Get a free brochure
http://www.stemcellresearchfoundation.org/Publications/Publications.htm


Acorda
Acorda Therapeutics
15 Skyline Drive Hawthorne, NY 10532 
Phone: 914-347-4300 
Fax: 914-347-4560
Acorda is not currently doing stem cell transplants, but they may in
the future, and I recommend contacting them.
http://www.acorda.com/
Be informed with updates via e-mail!
http://www.acorda.com/clinical_register.asp
Currently Acorda is running trials on Fapridine.
http://www.acorda.com/pipeline_fampridine_ms1.asp
http://www.acorda.com/pipeline_preclinical.asp

Directions and contact information:
http://www.acorda.com/careers_location.asp



Centerwatch
Currently also has no stem cell trials.
http://www.centerwatch.com/
Filling out the form on this page will assure you get e-mail updates
of trials you may be interested in.
http://www.centerwatch.com/patient/pns/patemail.asp


Additional Information:
If HGH is working for you, and your doctor approves, then you are
lucky. I had never heard of HGH being used for MS, and found nothing
to support this in my research. I did find several articles that
believe it is quackery and states that claims of benefits are
exaggerated. I would monitor the use of HGH carefully.
http://www.quackwatch.org/01QuackeryRelatedTopics/hgh.html
http://www.hghnews.us/p/101,133.html

If you decide not to go the Stem Cell route, here are lists of
alternate clinical trials:
http://www.bostoncure.org/msresources/trials.php?p=patient/studies/cat102.html&h=boscurehead.txt&f=boscurefoot.txt

http://www.clinicaltrials.gov/ct/gui/action/ChangeQuery

Another treatment route: T-cell vaccination:
T-cell vaccines involve using the patients own myelin-attacking cells,
attenuating them (making them too weak to function), and returning
them back to the patient. The body then develops antibodies to these
myelin-attacking cells, thus destroying all attacker cells, weak and
active, functioning much as a vaccine against a virus.
http://www.bcm.edu/neurol/research/ms/ms-vacc.html
See an illustration here:
http://www.bcm.edu/neurol/research/ms/ms-vacc1.html
See a depiction of an antibody attacking an attacker cell here:
http://www.bcm.edu/neurol/research/ms/ms-immreg1.html

Clinical Trials (or Being a Human Guinea Pig):
A primer on clinical trials
http://www.msif.org/en/research/clinical_trials/index.html

Hope for MS
http://www.ninds.nih.gov/health_and_medical/pubs/multiple_sclerosis.htm

Consortium of Multiple Sclerosis Centers
This site has more information on MS than I have ever seen in one site!
http://www.mscare.org/expert/main.cfm
The CMSC would like you to register:
 By participating in the patient Registry:
ˇYou are helping to provide the information needed to learn about the
variations of MS in a very large group of patients and to monitor the
progression of the disease
ˇYou help us monitor the effects of various treatments Your
information may be providing ideas for future research
ˇYou will be receiving the printed version of the MSQR free of charge 
ˇYou will be informed of recent studies and their results 
You will be notified of clinical trials in which you may be eligible to participate

http://www.mscare.org/patient.cfm?doc_id=67


Abstract
Hematopoietic stem cell transplantation for multiple sclerosis:
current status and future challenges.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Abstract&list_uids=12858065


Success Stories:
Judge Mills Lane, was given an autologous stem cell transplant to
treat his stroke, traveling to the Ukraine  for the procedure.
http://www.rgj.com/news/stories/html/2004/06/21/73700.php


?On October 22, 2002, a biopsy was taken on the trial's third patient,
a 64-year-old woman with the primary progressive form of MS who
received a Schwann cell transplant in April. No complications
occurred, and the patient is reported to be doing well.?
http://www.myelin.org/schwannupdate.htm


Hope for MS Treatment
http://www.mult-sclerosis.org/news/Jan2003/OligodendrocyteStemCellTreatmentforMS.html

An interesting Stem Cell newsletter
http://www.sma.org.sg/sma_news/3506/feature.pdf



I hope this has answered your questions! This answer is provided for
informational purposes only, and is not intended as a substitute for
medical advice from a licensed physician. Your doctors, and it appears
that they are very thorough, are your best source of therapy advice. I
wish you the best of luck, and you *are* staying out of the summer
heat, aren't you?    :-)

If any part of my answer is unclear, or if I have duplicated
information you already had, please request an Answer Clarification,
before rating. This will enable me to assist you further, if possible.

Sincerely,
crabcakes


Search Terms:

Stem cell transplant + MS
HSCT + MS
Autologous stem cells + MS
Clinical trials MS
Clinical trials MS + stem cells
oligoclonal bands MS + CSF
facilities performing stem cell transplants
HGH + MS
Human growth hormone + MS

---

Request for Answer Clarification by whitemarks1-ga on 07 Jul 2004 08:20 PDT

Crabcakes,

First of all I thank you sincerely. Your answer is very thorough! I do
have a question or two, but if you, and the Google mechanism, will
permit it, I'd like the chance to follow your links and formulate a
specific question list (brief!) in response before I submit the
highest rating for your response.

As I read through this answer for the first time I wondered the
following: There are numerous medical researchers using variations of
the old Chemo/radiation methods to knock out the bone marrow/immune
system and then rebuild it with stem cell injections - sadly, they are
also calling this barbaric (too strong a word?) procedure "stem cell
therapy". What I meant in my query was the mere injection or
implantation ((BTW: there have been apparently, somewhere (was it
Australia perhaps?), successes with the implantation of cells into the
spinal cord)) of stem cells. I assume that the risks and fatalities
you quote are from the 'chemo/radiation' version of stem cell therapy
... is this true?

Toward the end of your post you cite the Nevada judge who wentto the
Ukraine for fetal stem cell therapy. I've spoken, in the past, to
someone from the Ukraine (where there is, I believe, a high HIV
infection rate). Their price for fetal injection is in the 20K range.
Another Malibu-based group does fetal injections in the Dominican
Republic - I've spoken to them and couldn't get a solid 'read' but the
obective data looked rather impressive. I'm confessing that it is
probably fetal cell injection that appears most promising to me and
thus I'm hoping to get a sense of the risk/reward curves and
availability for that modality as well - questionable as it is. Am I
right to assume that, except for the infection issues, there is no
mortality yet associated with this procedure (as there is probably
also no efficacy data)?

Just to answer your question: No, lesions were probably not the cause
of the foramen narrowing at C5/6 - but bone spurs forming (from an old
injury) between these vertebrae impinged on the foramen and caused a
dangerous constriction. And, yes, there is no HGH data on MS anywhere.
I surmised, after a lot of reading and thinking, that HGH injections
combined with oral DHA and general Omega 3/6 fatty acids might
encourage regrowth of the fatty neurological tissues. I got the HGH
myself (Serono brand injectible (I think all of the bad press you'll
find is on the secretogogues and non-injectibles)) and started my own
daily program. If my subjective results are indicative, it is indeed
an impressive therapy. But as I'd expect, it merely slows the
progression and increases overall well-being significantly, making the
current deficits much easier to take. Again, since you speak with the
authority of a researcher I'll mention something of specific interest
in this regard; before HGH injections my stomach was very easily
irritated, and certain foods - red meat and wheat specifically - would
send me into a 2-day tailspin of weakness. After perhaps 2 months of
HGH my digestion was back to my youthful norm and no kind of food
caused heartburn or weakness. I've read that some linkage has been
posited between leaky-gut syndrome and MS (or MS-like symptoms). The
connection being presumably that the presence of undigested food
particles in the bloodstream triggers immune response. I wouldn't be
going too far on a limb to posit that HGH can, at the very least,
reverse the digestive component of this process. Forgive my foray into
medicine! BEST.

---

Clarification of Answer by crabcakes-ga on 08 Jul 2004 12:29 PDT

Hello whitemarks,

I wanted to let you know that I am working on further research for
you. So far, all the stem cell transplants injected diretcly into the
spinal column, were performed in animals. I continue to endeavor,
however, and will post as soon as I am done.

Did you have further questions besides those in your clarification?

Sincerely,crabcakes

---

Clarification of Answer by crabcakes-ga on 09 Jul 2004 14:42 PDT

Hi again whitemarks1,

In your clarification, you ask ?Am I right to assume that, except for
the infection issues, there is no mortality yet associated with this
procedure (as there is probably also no efficacy data)??

No, it would not be right to assume this. You are correct that
experimentation in lab animals seems to show that injecting stem
cells/stomal cells/glial cells into the cerebrospinal column is
promising.  I still found NO solid evidence that this is safe, yet, in
humans. Further below in this clarification, I have posted the name of
a Portugese doctor, who has had limited success transplanting
olfactory cells. There are risks still, to any such procedure.

The autologous procedure I mentioned in my answer involces, ?wiping?
out the immune system before transplanting new cells. This is the part
of the procedure that is risky. Yet, without destroying the cells that
manufacture the ?stuff? that causes MS, it would regenerate and you
would be back at square one. The transplantation of glial cells that
seem to regenerate spinal cord tissue is a different case than MS.
(Glial cells protect and support neurons). I don?t want to be the one
to rain on your parade, but it seems that a SAFE and PROVEN
non-autlogous transplant is not yet available in humans, for MS, and
may be 5 or more years away. Personally, I would avoid off-shore
experimental fetal cell transplants, as they come with far too many
risks. If this were for a family member of mine, who understood the
risks and wanted a stem cell transplant, I would feel comfortable with
the autologous stem cell transplant, performed in the US, the UK,
Autralia and possibly Singapore, Italy or Germany, after a great deal
of research and meeting with the performing doctors. I would NOT feel
comfortable with a fetal stem cell transplant done in Haiti or the
Ukraine.


?Immunological rejection of non-autologous stem cells may occur in the
CNS, as elsewhere in the body, and can cause the loss of the graft.
The use of immunosuppressant drugs may prevent such rejection. Of
concern is the possible late development of neural tumours arising
from implanted stem cells. Genetically engineered stem cells may
harbour oncogenes, which could also theoretically induce late tumour
development in the graft. However, tumours have not developed in any
cultures of human stem cells or after transplantation into animal
models, and further experiments are required to determine the risks.
The first tentative steps with a new technology such as stem-cell
repair must be undertaken with great caution and anticipation of
possible risks.?
http://www.mja.com.au/public/issues/180_12_210604/ros10016_fm.html

http://news.ninemsn.com.au/article.aspx?id=10951



?One risk may be uncontrolled proliferation of the transplanted cells
and another may be transmission of infectious agents, but the latter
risk would be smaller with embryo stem cells than with adult stem
cells.?

United Nations Educational, Scientific and Cultural Organization 


http://portal.unesco.org/shs/en/file_download.php/64b74abda57372bdc22570b42c1718f1StemCells_en.pdf

Just a few weeks ago, scientists at UNC, Chapel Hill discovered how
the molecular pathway that promotes nerve growth in the spinal cord
functions. ?The scientists found NGF stimulation occurred in the
growth cone of the axon. This simplified a complex problem that had
previously eluded others who did not focus on the growth cone, they
said. In the molecular pathway they identified, NGF signals two
proteins that, in turn, regulate another protein to assemble the axon
from its building blocks called microtubules.?
http://www.nlm.nih.gov/medlineplus/news/fullstory_18686.html

PBS highlights the work of a Portugese doctor, Dr. Carlos Lima, of
Lisbon?s Egaz Moniz Hospital, and some American patients who went to
Portugal to seek treatment for spinal cord injuries, using stem cells
harvested from each patients nose!
You can read the entire program transcript here:
http://www.pbs.org/wnet/innovation/transcript_episode6.html

http://www.pbs.org/wnet/innovation/about_episode6.html


?Lima?s scientific epiphany came 15 years ago when, after reading
about olfactory tissue?s unique neurological properties, he
immediately envisioned its potential for bridging injured spinal
cords. Since then, he has unwaveringly directed his research toward
this goal, carrying out extensive studies in animals as well as human
cadavers.?

?The surgery consists of harvesting olfactory tissue from the
patient?s nasal cavity, preparing it, and implanting it back into his
or her spinal cord injury site. The procedure takes 4-6 hours
depending upon injury level and extent of injury, presence of fixation
plates or screws, etc. The patient is discharged from the hospital
after 4-7 days.?

Patients regain their sense of smell after a few weeks, and of the 7
human patients, 6 regained some muscle control and sensation. The
seventh, had un undetected second lesion, and did not improve.

You can sign up for a newsletter to stay informed on this page as well.
http://www.healingtherapies.info/OlfactoryTissue2.htm

You may find the same procedure in Detroit, MI now. The procedure
described in this article is for conditions other than yours, but it
may be worth wile talking to them.
http://www.freep.com/news/health/spine13_20040413.htm
Rehabilitation Institute of Michigan
261 Mack Avenue
Detroit, MI 48201
313.745.1203
http://www.rimrehab.org/
Contact Information
http://www.rimrehab.org/contactus.html


?Neural stem cells were isolated from the dentate gyrus of the
hippocampus and the walls of the ventricular system called the
ependymal layer. The progeny of these stem cells differentiate in the
granule cell layer, meaning neurogenesis continues late into adult
rodent life. These stem cells also migrate along the rostral migratory
stream to the olfactory bulb, where they differentiate into neurons
and glial cells (Luskin, 1993). Nerve cell differentiation has been
witnessed in vivo, as well as in vitro when stimulated with an
epidermal growth factor (Gage, 1995). The discovery of differentiating
stem cells in the brain revolutionized the way scientists think about
treating spinal cord injury. Suddenly the chance for partial or
possibly full recovery from paralysis seemed like a plausible option.
Attention shifted to regenerating the neurons and glial cells as a
solution to spinal cord injury.?
Problems arise when humans are introduced into this experiment. When
foreign protein is recognized in the human body, an immune response
will be triggered. The article sstates that Fetal stem cells can?t
simply be injected into the cerebro-spinal fluid. The rats in the
study were on high doses of cyclosporine (to prevent graft vs. host
reactions) and even researchers do not yet understand the entire
process.

http://www.namiscc.org/newsletters/December01/SCI-stem-cell-research.htm


Here is more reading on graft vs. host syndrome:
http://www.emedicine.com/med/topic926.htm

?Researchers at Emory University in Atlanta published the results of a
study in Nature Medicine. These researchers had transplanted stem
cells of oligodendrocytes (cells from the central nervous system) into
dogs with a demyelinating disease similar to human multiple sclerosis.
They observed large areas of repair of the demyelinated areas after
the transplant. Much work remains to be done before these results can
be translated into human therapies, but the potential for successful
treatment for multiple sclerosis is exciting?
http://www.infoaging.org/b-stem-7-r-spin.html

This article about a study done at Johns Hopkins University describes
headway in the use of stem cells and spinal injuries ?One strategy to
repair damaged spinal cords involves directing stem cells into areas
where neurons are damaged.
Much work remains, however, before researchers can use stem cells or
cells derived from them to restore lost or damaged neurons in people.
A bit part of the problem is that stem-cell derived nerves are blocked
from reaching muscles by myelin, which forms a sheath that insulates
nerves and also inhibits the growth of axons, the nervous system's
primary transmission lines.?
http://www.betterhumans.com/News/news.aspx?articleID=2004-04-29-1



?These problems were vividly illustrated when many patients with
Parkinson?s disease travelled to Mexico to have adrenal medulla
transplanted to the caudate nucleus in the hope of a miracle
treatment, only to be disappointed; some also suffered serious
complications. Subsequently, Goetz et al reported the results of
adrenal medullary transplantation in 61 Canadian and United States
patients who underwent surgery in 13 US centres. Only 19% of patients
were considered to have shown improvement at 2 years, and there were
significant rates of morbidity and mortality from this surgery.?
http://www.mja.com.au/public/issues/180_12_210604/ros10016_fm.html


Latest Stem Cell research news, from StemCell Research News:
http://www.stemcellresearchnews.com/Stem_Cell_News.htm


This is a ?preview? of last year?s ?Who?s Who in Stem Cell Research
http://www.stemcellresearchnews.com/PDF_Docs/Who'sWhoFall2003Preview.pdf
You can order a Summer 2004 copy here ($99-$179 USD, depending on report):
http://www.stemcellresearchnews.com/


It appears the Judge Mills Lane, who went to the Ukraine, received
stromal cells (autologous cells) and not fetal cells for his
transplant. ?Zanjani said Mills Lane?s doctors probably hope to
regenerate the type of brain cells that were damaged during his
stroke. He said the fact Lane?s own bone marrow is being used to
create the stromal cells for his treatment ?is very good because there
is no rejection phenomenon. It?s an interesting approach.?
http://www.rgj.com/news/stories/html/2004/06/16/73299.php?sp1=rgj&sp2=News&sp3=Local+News&sp5=RGJ.com&sp6=news&sp7=local_news&jsmultitag=news.rgj.com/news/local

 ?In stromal cultures, stem cells adhere rapidly and tightly to the
stroma. even after many weeks of culture, all repopulating stem cell
activity is found associated with the stroma. Stem cell maintenance is
dependent on direct contact to the stroma and conditioned supernatant
even from high supportive stromal cells cannot substitute for the
necessity for direct cell- cell contact.?
http://www.skcc.org/muller_stromal_cells.html
See an illustration here:
http://www.skcc.org/muller.html


Other articles on Stem Cells
Recent developments at Cambridge University
http://www.theaustralian.news.com.au/common/story_page/0,5744,9917205%255E30417,00.html

http://www.washingtonpost.com/wp-dyn/articles/A29561-2004Jun9.html

http://www.abc.net.au/news/newsitems/200406/s1139024.htm



I am glad to hear that the HGH is helping your digestive problems, and
you doctor is monitoring you. However, the use of HGH still smacks a
bit of snake oil to me.  In researching leaky gut, very, very little
was found on reputable and reliable conventional medicine sites. The
term appears to be the name of a syndrome that alternative medicine
uses to describe a condition of having large pieces of food that
?hide? in the intestines, and are not digested. This does not mean the
food particles enter your bloodstream though. (It just wouldn?t fit!)
When food is digested, only very tiny molecules of  protein, glucose,
fats, carbohydrates, and other  nutrients enter the bloodstream. I
must say, in 25 years of working in health care, I have never heard
the term ?leaky gut?.  Now, I am not tossing alternative medicine out
on its ear here. I just want to clarify that ?leaky-gut?, as I have
read so far, does not have a great deal of credibility in conventionl
medical circles.

MS patients do seem to have gastro-intestinal problems, as part of the disease.
http://www.nationalmssociety.org/Brochures-BowelProblems1.asp
?Because MS interrupts or slows the transmission of signals to and
from the brain, the electrical impulses to the muscles that are
involved in emptying your bowel can become disrupted.?
http://my.webmd.com/content/article/57/66138.htm

Other digestive syndromes that cause digestive problems are IBS
(Irritable bowel syndrome) H. pylori infection which can cause GERD, 
GERD, diverticulosis,  and several others. In IBS, the cause is
thought to be that some people?s immune system reacts with a protein
on the intestinal wall, causing inflammation, and thus digestive
problems. Over a million UA Americans suffer from IBS.

Irritable Bowel Syndrome
http://digestive.niddk.nih.gov/ddiseases/pubs/ibs_ez/


H.pylori
http://digestive.niddk.nih.gov/ddiseases/pubs/hpylori/

http://www.cdc.gov/ulcer/md.htm

GERD
http://digestive.niddk.nih.gov/ddiseases/pubs/gerd/


This is an interesting study of MS patients and leaky gut syndrome.
The study found that some MS patients do have a higher level of ?gut?
permeability.
?MS patients had increased intestinal permeability, a finding not
previously reported. High levels of CD45RO were found on circulating
CD20+ B cells from patients with MS. This has not been reported
previously in MS and is found in very few other conditions. Eight
patients with coincident MS and Crohn's disease or MS and UC were
studied. Coincident MS and UC patients expressed CD45RO on CD20+ B
cells, a finding not identified in UC patients alone. A subgroup of MS
patients has increased intestinal permeability. These patients express
CD45RO CD20+ B cells, also found in Crohn's disease.?
http://www.direct-ms.org/leaky_gut.html


This site seems to be authoritative on the topic of leaky gut. But if
you notice, it is a personal site, that links to a clinic that sells
supplements.
http://www.wehelpwhathurts.homestead.com/leakygut.html

HGH Plus is not what you are using, but I was searching for
information about HGH and leaky-gut, and found this interesting:
?Gut permeability. Some of the participants were experiencing
digestive disturbances such as Leaky Gut Syndrome prior to
volunteering for this study. As such, the initial levels of absorption
would have a tendency to vary. (It is interesting to note that one of
the ingredients in the product, Hgh Plus is used to improve digestion
and absorption. Thus by all measurable accounts, the product seemed to
have produced the secondary result of increased absorption and
reduction of gut permeability.)?
http://www.rxforwellness.com/shoppingchannel/hghfeatures_8.shtml


Please note that the statement above admits that in *this* product,
the extra ingredients are what seems to help digestive problems. Here
is a list of the other ingredients in HGH Plus:
http://www.rxforwellness.com/shoppingchannel/hghfeatures_6.shtml

This site claims the same, although it appears to be copied.

There you go, whitemarks1. Again, remember this information is for
educational purposes only, and is not intended to diagnose or treat.
The information I presented on HGH,  H.pyloi and IBS is to merely make
you aware that other conditions *could* be causing your gastric
distress, and not intended to oppose your own opinions, ideas, and
treatment.


I wish you the best, and I find your foray into medicine as a positive
step toward helping yourself find and understand your best course of 
medical therapy!  Again, if you need further clarification, please
click the Answer Clarification button, and I will respond.

Sincerely,
crabcakes

Thank you for the stars and the nice tip! Both are appreciated, and
again, I wish you luck!
Sincerely,
crabcakes

To you and future readers:

I hope you have found answers and are doing well.

If not, you may wish to revisit your Lyme diagnosis.  You wrote ?I've
been tested for Lyme ... with no positive results. ".

Regrettably, symptoms of Lyme can become very serious long before you
meet the thresholds of CDC approved diagnostic testing, which I will
discuss below.
You also wrote "experienced some brain-related losses in the past
(brief troubles with vocabulary and very slight slurring of speech,
both of which passed in a few days or weeks" which is suggestive of a
spirochete infection (Lyme).

Is it easy to spot Lyme disease?  Yes, if you have the "classic"
symptoms and notice them within a day or so of the infection. 
However, according to the Center for Disease Control, you could become
infected with Lyme and never exhibit any symptoms.  Of course, your
issue is to explain the source of the symptoms you do have.  Please
look at this symptom list.

Note that when the body begins loosing its natural immunity fight with
the disease, any or all of these symptoms may come and go for days at
a time.  This is not a comprehensive list of Lyme symptoms.  When
seeing many of these symptoms without obvious other cause, one should
suspect Lyme.  I talk about testing below.

	Unexplained low-grade fevers (especially repeatedly)
	Constant low body temperature
	Headaches (especially frequent or recurring)

	Trouble concentrating
	Difficulty with speech or writing; word or name block
	Forgetfulness, poor short term memory, poor attention, problem
absorbing new information
	Mood swings, irritability, depression

	Disturbed sleep (too much or too little), fractionated, early
awakening, difficulty falling asleep.
	Increased dreams and/or nightmares 

	Joint pain or swelling or stiffness (the joints, neck, or back) / Fibromyalgia 
	Muscle pain or cramps (in combination with joint pain, an indicator)
	Neck creeks and cracks (noises in neck when moving head)

	Upset stomach or abdominal pain
	Change in bowel function (constipation or diarrhea) / Irritable Bowel
Syndrome (IBS)
	Irritable bladder or bladder dysfunction

	Chest pain or rib soreness
	Heart palpitations, pulse skips, heart block

	Unexplained hair loss - hair coming off in the shower
	Unexplained weight change--loss or gain

	Tremors in the fingers or toes
	Twitching of the face or other muscles
	Unusual recent clumsiness (walking, climbing stairs)

	Tingling, numbness, burning or stabbing sensations, shooting pains,
skin hypersensitivity
	Eyes/Vision: double, blurry, increased floaters, light sensitivity
	Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
	Painful teeth
	Unusual tastes or smells

	Fatigue, tiredness, poor stamina
	Sore throat
	Swollen glands

	Increased motion sickness, vertigo, poor balance
	Lightheadedness, wooziness, unavoidable need to sit or lie down
	Shortness of breath, cough - mild asthma
	Lightheadedness, wooziness, unavoidable need to sit or lie down

Medicine is a business. Every business will take you as a customer.
Sometimes you change your car's oil at the dealer and sometimes at
Wal-Mart.  Qualifications for changing oil are not the same as for
repairing a transmission.  Do not expect a family doctor or
pediatrician to be able to diagnose Lyme.  Only a Lyme Literate
Medical Doctor (LLMD) may be qualified to help you determine if you do
or do not have Lyme Disease.

Search for 
	"Links common to Lyme disease misdiagnosed".

Western Blot is a screening test.  False positives are rare.  False
negatives are common.  The following tests are INDIRECT tests that
look for something that might be there (or not) in combination with
the disease:

	ELISA
	Western Blot
	IFA
	Borreliacidal Antibody Assay (Gunderson test)
	T-cell Activation Test 

PCR tests when done properly take weeks, NEVER overnight.  They look
at DNA in the blood.  They seem to be fairly effective but are not
part of the CDC standard protocol.  The following tests DIRECTLY test
for the disease:

	PCR (DNA amplification)
	Lyme Urine Antigen Test (LUAT)
	Antigen Capture Test
	culturing of skin, blood, CSF, urine, or tissue
	immune complex / antigen-antibody test 

EVERY laboratory and clinic is likely to tell you their test is the
best.  "Caveat Emptor" or "Let the buyer beware."

I hope this information is useful to you or a future reader.
Arpagenx

You also can chack this  sites....

http://www.emcell.com

they're the best in stem cells...