For all those who have contacted me in the last week about the stem cell treatments for MS in Chicago: thank you.
Yes, I know about it. No, I won’t be doing it.
What they’re doing in Chicago is a less elegant variation of work done in the 1990s at Johns Hopkins by Robert Brodsky. Here’s a excerpt about Brodsky from the Johns Hopkins website:
Dr. Brodsky’s major clinical research involves the study of aplastic anemia, PNH and other bone marrow failure disorders. His research shows that immunoablative doses of cyclophosphamide, without bone marrow transplantation, can lead to durable complete remissions in severe aplastic anemia. The reason high-dose cyclophosphamide is able to ablate the effector cells without destroying hematopoietic stem cells is that the earliest stem cells (but not lymphocytes) contain high levels of aldehyde dehydrogenase conferring resistance to the cytotoxic properties of cyclophosphamide. Dr. Brodsky and his colleagues in neurology and rheumatology are applying this approach in other severe autoimmune disorders including, scleroderma, myasthenia gravis, multiple sclerosis and autoimmune hematologic disorders.
In other words, if you give someone a high enough dose of the chemotherapy drug cyclophosphamide, it kills your grown-crooked immune system (the immune system that’s responsible, in MS, for attacking the axons and/or myelin–there are competing theories–of the central nervous system, which is what eats holes in the spinal cord). But the cool thing is, the cyclophosphamide doesn’t kill stem cells, that is, the pure uncrooked precursor cells. So once you’ve killed the crooked system, you sit back (in a bubble, or you’d die) and wait for the stem cells to regenerate a brand new, uncrooked immune system, one that doesn’t indulge in myelin banditry. And, presto, you’re cured (if you, y’know, survive the no-immune-system-for-2-weeks thing; some people don’t).
I first heard of Brodsky’s work in 1999. Theoretically, it should work: knock out the crooked immune system, leaving the pure, untrammelled stuff to regenerate a pristine system. I pestered my neurologist until he picked up the phone and had a long chat with Brodksy. I got excited. And it was at that point that I learnt no one would do this procedure for me. I was ‘too highly functioning’ and it was ‘too dangerous’. In other words, in medical opinion, the risk outweighed the reward. I was furious: I would have to wait for years until I was too sick to walk, until the scarring on my spinal cord had happened over and over and could never be repaired, then and only then would they consider giving me a treatment that could kill me but could not longer fix me. I tried everything I could think of. No one would listen. For my sanity, I let it go.
Then–around 2004, I think–my neurologist said he’d been looking at the latest data, and the Brodsky stuff didn’t work. Oh, it worked for a few years, but then the immune system grew crooked again and went back to its old banditry, attacking unwary myelin.
And then, in 2007, I heard Brodsky and Johns Hopkins had set up a business, Revimmune, to sell people this treatment. They’d managed to fiddle with the protocols just enough to make the risk/reward ratio worth it.
But by this time I was an old hand at thinking about the immune system. I had tried just about every immunomodulatory and immunosuppressive drug out there. They always made me feel great for the first 2 or 3 months, and then feel terrible for 2 or 3 years. Cyclophosphamide, in my opinion, would multiply this effect. I’d feel awesome for a year or two, then god knows what would happen.
These chirpy press releases say things like ‘and then a drug is administered…’ and make it sound like popping a pill. They never tell you about the pain, the destroyed veins, the vomiting and hair loss, the osteoporosis, the joint necrosis, the amenorrhea, the loss of taste (it comes back after a year or two, but it’s never the same), the weight loss, the heart damage, the possibility down the line of myeloma, the swollen joints, the terrifying crash of blood counts and the rescue shots that make your bone marrow swell so that sitting, standing, walking, lying down–everything–is agony. Plus there’s the constant blood work, the constant fearful waiting for results.
So, thanks everyone, but no. This is not for me. I’m sticking with the low-dose naltrexone.
14 thoughts on “MS research”
well said Nicola. For this autoimmune junk, I’ve also found out that the cure is at least as bad as the disease. I’m glad that the LDN is still working for you.
Yes, those press releases are totally misleading. And as you say, sometimes even sitting in the bubbles, people die. That shit is poison – literally. And they have no idea what made the system develop incorrectly in the first place, so they don’t really know that it won’t do the same thing over again. An article I read about it mentioned the 5 people who had already relapsed, and postulated that is not a good indication for what’ll happen later to the others. Having seen people go through chemo, I can tell you that it is fucking brutal. And sometimes those things like the taste and the neuropathy never clear up. And the idea is that chemo doesn’t kill brains cells, but it does — hence the phrase, ‘chemo brain.’>>Anyway, I’m glad you aren’t doing it. Thanks for the update.
<>jane<>, yes, they compare apples and oranges: stringently measured disability outcomes versus actual (and difficult to quantify) health and well being.>><>jennifer<>, this stuff <>is<>brutal, it <>does<> sometimes kill people, and yet, occasionally, it <>can<> help. The main problem I have with it is how doctors gloss over the ugly, messy reality; patients don’t know what it is, exactly, that they’re choosing.
I have no knowedge on it one way or the other– besides continuing to bemoan that the scientific side of medicine has been subjugated to to financial side. That is the kind of behavior that will make the scientists of the next few centuries go “HUH?!” the same way that contemporary scientists are baffled that church doctrine tainted science.
I love you just the way you are, but I fervently wish that someone would come up with something.It always seems like the next miracle cure results in the next big problem.
@nicola – Thanks for the information. I’m sure I can’t begin to imagine what you’re going through but I’m pulling for you and everyone else in a similar predicament.>>My father had chemo and it took about six months for it kill him. I am no friend of traditional medicine. No, I actually loathe it. But, I am still hoping for a cure. Take care.
I know – sometimes it can/does help. the tricky part is making an educated guess about when it will do more good than harm, and of course every case is different. And I have issues with doctors minimizing the problems too. It’s a tough spot they are tho. Half the time if people knew what they were really in for, they probably wouldn’t do it — but maybe that would be better for them. I think most doctors are not even fully aware of how bad it is for the patient – partially because they don’t see much of the actual process, and partially because it’s too hard for them. Doctors and nurses (speaking generally) maintain a certain detachment in order to be able to be around very sick people and do their job. And I think they do care about their patients and are often willing to trade quality of life for a miniscule chance at some drug working – or maybe learning something from it that will help future patients. And some of them just want to make money and get written up in journals – power corrupts sometimes.>>That’s part of why it’s so important for people to become educated on their own – as you have done.>>I saw a poll once of oncologists asking whether or not they would take chemo in certain circumstances. I don’t remember the details, but a lot of doctors said they would not take the chemo they prescribe. Makes me wonder.
<>nicola,<> what a rollercoaster you’ve been on… I hate autoimmune crap, I hate that it–and pain, in general–happens to people. I’m so sorry. It makes me angry that there are always crooks willing to profit from the pain of others. >><>jennifer<>: ><>“I don’t remember the details, but a lot of doctors said they would not take the chemo they prescribe.”<>>>I had to drop out of med school when I realized I wouldn’t take any of the stuff I’d end up prescribing. I don’t trust traditional medicine, though I must submit myself to it every year or so. >>One of the things I admire about my mom is that she tries everything on herself first, then she asks me and my siblings to volunteer for her experiments. I’d love to meet more healers who also went through those steps first, that they believed in their methods enough to put their families on the line. >><>steadycat,<> I’m sorry for your loss. >>I’ve watched so many loved ones go through chemo and die… At this point in my life, I’ve decided that if I’m ever faced with the choice, I won’t go for it. Of the 7 close people in my life who struggled with cancer, the only one still alive is the guy who stayed clear of chemo, and just goes in for surgery every three or four years to get his brain tumour “trimmed”—his word-choice. He’s been at it for 20 years now, and he always manages to get back on his bike, even if the tumour had grown to the paralysing point where he couldn’t chew his own food. >>I know every case is different, but in all cases chemo is consistently brutal.
I (and probably many of you) have seen too much suffering in our loved ones than we deem necessary.>>I’m just relieved and thankful that once stem cell research is allowed to happen again, there’ll be hope for the cures we’re all waiting for.>>Until then…we just keep our eyes peeled for new developments and let each other know.
Nicola – I have a friend who works as a therapist at the MS Society HQ in Scotland – MS is highest per capita in Scotland than anywhere else in the world for some reason. I do know that all kinds of research is going on all the time looking at many avenues. I also beta read for an author with it too so I always read news of any breakthroughs and get devastated when I discover that they are yet more cul de sacs of disappointment. However, at least a lot of research is being done all the time – much of which does not make the sensational news – and I really do hope that they will find a proper and dignified cure which, one day, they may well do. Meantime you seem so brave and articulate about it all – – It is clear from your writing you have a first class heart and mind but unfortunately, like many great writers before you who suffered with physical illness and ailiments, it’s not wrapped up in a body that obeys you all the time, to put it mildly. Don’t give up hope though – stranger things have happened that might to a great extent ease the pain and suffering if not offer a total cure. I know you have a wonderful partner and good friends, but I, too would like to add that you can contact me any time if you just need to blow off steam about it all – just send me a message.
<>mordicai<>, that’s something I think about a lot, how primitive this could all seem in just a few years. And then I think…<>unless we’re all living in caves.<>>><>barbara<>, one set of meds I was on: take med A in order to stomach med B which helps the sideffects of med C–after which you need med D (and E and F) to mitigate the fallout.>><>steadycat<>, sorry about your dad. I watched my sister go through useless treatments for two years. Sigh.>><>jennifer<>, yes, yes, yes. We’re our own best advocates and advisors.>><>karina<>, oh, yep, I’d love to make some docs go through what I’ve been through. My least favourite response is the perplexed look, ‘That wasn’t supposed to happen’. Tuh.>><>janine<>, thanks, yes. You never know what’s around the corner.>><>georgi<>, that’s very kind but not necessary. I don’t do hopeless, and I have friends and a big family.
Yeah, that cave stuff comes to my mind sometimes too. But I also read recently on medscape about how the not-so-distant future for stem cell regeneration working is probably in nanotechnology/nanomaterials. It’s not SF anymore… Wow. If they just have the money to keep moving forward.
Nicola,>I’m just catching up on emails and wanted simply to say I’m sorry you experience this thing that has no clear answer at present.>Sarah :/
jennifer d– the great thing about transhumanism is that it can still be compatible with global catastrophe– Bernie Madoff 2.0 will be a float cloud of nanobots while the planet is going through a new meteorological era!
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