Monday, February 2, 2009

MS research

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.

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