I've been inundated with personal messages and interest in stem cells since my recent post addressing the possiblity of stem cells as an adjunct to CCSVI treatment.
Some people seem to want more information. I'll share what I know by starting with a story:
In the early 1990s there was a special edition of Scientific American focusing on the immune system. One of the things that they described was research on mice who had an induced stroke. After the mice had the strokes doctors gave them humanized stem cells. The stem cells were labeled so they would show up blue and after the mice were sacrificed it turned out that the stroke area was completely full of these blue cells. The mice who got the cells were much more functional than their untreated brethren who'd had strokes. God bless the little mice!
Since that time I've been waiting to learn that stem cells were helpful for human patients with neurological diseases in human trials. Unfortunately the research has been extremely slow due to funding issues (it's not a phamraceutical) and also hampered by the questions of ethics surrounding embryological stem cells.
In fact, there is a great amount of confusion surrounding this whole issue of stem cells generally and I'd like to help clear that up a little if I can. There are three things that people with MS think of when they hear "stem cells."
EMBRYONIC
The most controversial type of stem cells are embryonic stem cells that are taken from fertilized eggs after hours of dividing but before they have organized or differentiated into any type of tissue. Such a group of cells has the potential to become a baby after many divisions, much cellular organization, and a bit of luck (like was the uterus at the right phase to allow implantation when the cells got there? if not this group of cells gets washed out when still a blastocyst with the menses. This happens constantly in sexually active women and in in vitro clinics when the implanted cells don't "take"). The problem is that many of us are terribly uncomfortable with the idea of fertilizing an egg in a lab just to use the cells for our own health.
When people hear the words "stem cells" this controversial type of embryonic stem cell seems to come to mind first probably because it is all tangled up with life issues, but it's not the only -or even the best- kind of stem cell.
MYELOABLATION
The second thing many people with MS think of when they hear "stem cells" is something similar to the Revimmune concept being investigated at Johns Hopkins.
The driver behind this approach is that it is assumed that in multiple sclerosis the immune system has gone crazy and is attacking the brain; the classic autoimmune theory for multiple sclerosis. Their goal is to destroy the immune system and make it as naïve as that of a newborn baby so that it no longer attacks the brain. To accomplish this they first harvest stem cells from the MS patient and save them in the lab. Then heavy doses of chemotherapy drugs are given which kill (ablate) the immune system entirely including the source in the bone marrow (myelo).
This is very dangerous and some people actually die during this phase when they have no immune system... but the old immune system that used to "know" how to attack bad things like mumps measles chickenpox and all the things a person is vaccinated for in childhood is gone. The benefit is that supposedly the attacks on the brain will stop too because the soon to be new immune system won't have any "programming" to attack myelin either.
The person is then given their own stem cells which rebuilds a spanking new immune system. This immune system is completely naïve and the person will need a full set of baby shots again so they once again are protected from mumps and the like. Supposedly this new immune system will not attack the MS brain again. I discussed this type of therapy in my book and cited several papers that say this approach seems to help for a few years, but over time the vast majority will begin to progress again. (ccsvibook.com--it's on sale at Amazon this week so please get one if you haven't...)
***Thought experiment-if MS is caused by a freak exposure to Epstein-Barr virus, genetics, a sequence of other viruses and bacteria like chlamydia pneumoniae, and a lack of vitamin D all happening in just the unlucky way so that the autoimmunity of MS is triggered--- how did this MS person who has this myeloablation get so unlucky that he managed to re-train the immune system to attack brain cells again in just a few years? ***
So the first thing people usually think when they hear stem cells is about embryonic stem cells, and then if they're MS patients they tend to think about this type of therapy that uses a strong dose of chemotherapy. But that's not the only way stem cells can be used.
REGENERATIVE AND IMMUNOMODULATORY STEM
Perhaps the most promising method is people getting stem cells with the sole purpose of those stem cells regenerating damaged brain tissue, just like that mouse with the stroke at the beginning of this essay. These cells also apprear to have immune modulating effects as well, meaning the existing immune system is biased toward a quiescent non aggressive mode when this big mass of stem cells are running around in the body sending healing messages everywhere.
Stem cells used for regeneration of brain tissue can be harvested using a number of methods. Mesenchymal stem cells are the most promising for people with neuro degenerative diseases because they are involved with development of nerve tissue. Such stem cells can be harvested from the bone marrow but they are very rare compared to other types of stems in this marrow. It's beginning to appear that perhaps harvesting fat or "adipose tissue" is the best source for mesenchymal stem cells.
To harvest mesenchymal stem cells, a couple of teaspoons of fat is taken from the belly, the mesenchymal stem cells are filtered out then grown in the lab and large numbers are given via IV to the patient. The stem cells go all over the body through the vascular system and are attracted to any area where there is inflammation or immune system activity suggesting that there is a problem that needs healing.
Because of this, the stem cells are "absorbed" by many different tissues. In order to have enough for the brain to actually get some of these mesenchymal stem cells, large numbers need to be infused. This is a topic that would be best addressed in an entire essay and is not completely covered in this one, but notice, when a person's immune system has been destroyed most of any stem cells that are given to them would be used to rebuild the immune system and not to regenerate brain tissue. In contrast, simply using stem cells for the purpose of regeneration without hurting the immune system and damaging the bone marrow means that many more are available to go to and heal damaged brain tissue.
There are many studies looking at stem cells in multiple sclerosis; ijn no case is it FDA approved for MS yet. Some of these studies are on the myeloablative approach but some of these studies are giving stem cells in an IV to regenerate brain tissue and also to "modulate the immune system". Researchers are also studying the use of stem cells in patients who have had strokes as a regenerative strategy where there is no question of immune system function.
In any case this research is promising and there are classic randomized controlled trials looking at whether stem cells are helpful in patients with MS and strokes. Early results are positive, but completed studies are small. Such studies over time will make it possible for insurance companies to cover such procedures.
Dang! hurry up and wait again!
However at this point in time it is possible to attain this type of treatment in Texas as I mentioned in an earlier essay. Here are some links for the curious (this is FYI -NOT medical advice- of course talk to your own doctor):
Texas State Senator Rick Hardcastle, speaking about stem cell research underway in Texas, and his own treatment for MS
LINK
4/13/12 Texas Board Approves Rules on Use of Stem Cells|
LINK
It is also being used in some overseas clinics, including at least two that combine CCSVI treatment with stem cells. But caution is advised and mediical tourism is absolutely not recommended.
As we've seen with CCSVI, treatment at home is the best both from the standpoint of aftercare and just generally as we are politically active getting our various countries involved.
Where would Canada be if all their MSer's had just gone overseas for CCSVI treatment and not tried to get it at home? Though they haven't won the battle, they have fully engaged and are working toward approved solutions in Canada for MS patients. That is what we need everywhere for both CCSVI and stem cells.
The simple fact that these strategies are not supported by commercial interests should not relegate them to the dust bin; that's why we need to advocate for them.
There are unknowns about this type of therapy--these have to be mentioned.
1. Some people wonder if these stem cells might eventually cause some kind of cancer in the tissue that they originally "healed" because they might overgow in that location and form a tumor.
2. The number of stem cells given in different clinics can vary hugely from thousands all the way to hundred of thousands and millions; who is using the right amount?
3. The immunomodulatory properties of stem cells may be a real added bonus for patients, but when the natural stem cell balance has been altered like this might that result in some unexpected effect (i.e. is the immune system modulated in such a way that it possibly would overlook a cancer cell?)
4. Are these cells permanent, or will constant re-dosing be necessary? And what is the optimal dosing schedule? And if people are re-dosed does that change the safety profile relative to something like Hodgkins when it is limited?
5. Other things we don't know we don't know....
6. Not FDA approved yet because there are inadequate stage III trials showing efficacy.
All of these things will become more clear as time goes on, and I for one am extremely hopeful that stem cell therapies will mean that we really truly turned the corner and chronic diseases can be better managed using this approach. I'm very anxious for research to move forward in this area and begin to answer some of the questions, and I am delighted that those libertarian Texans have made a move to allow the clinics in their state to use this type of approach. The Texas state government requirement for such clinics to keep transparent registry data means we'll get a lot of data very soon because of that requirement.
I am ready to be an activist to help move this out of the lab and into patient hands in our own communities; being aware, learning, following the research, writing letters to politicians when necessary is what I mean... Are you?
To follow patient activist efforts in Texas for adult stem cell research, like this page
LINK
Remember that little mouse I talked about at the beginning of this essay? That's been 20 years ago now. Over that 20 years stem cells have been given to people with Hodgkin's and non-Hodgkin's lymphoma without any negative consequence. People undergoing other types of cancer therapy have likewise used their own stem cells to rebuild after aggressive therapy. It appears to be safe for people to have their own stem cells.
But this much I know is true; MS left its own devices is not safe. I've used up all of the devices available to me and I'm ready for this new "device" to be in my toolkit to repair damage after 21 years of MS/CCSVI.
I've said it before but I'll say it again-pump up the veins and passed the stem cells!
Marie
http://ccsvibook.com
*please, buy one we are far out of pocket still and the publisher put it on sale this week!