Some quick definitions, for those who may not know the lingo yet. MS - Multiple Sclerosis - seems to happen when the body's own immune system begins attacking the nerves in the brain and central nervous system. The attacking cells are "macrophages" - white blood cells. To get into the brain and central nervous system, these macrophages must somehow pass through a semi-permeable membrane called the "Blood-Brain Barrier", or BBB for short. Once inside the BBB, the macrophages destroy the myelin (the insulating layer around the nerves that allows impulses to travel from one neuron to another).

For many people with MS, the damage occurs in a short attack, with a general recovery afterwards as the body's own supply of stem cells migrates to the damaged area, to become new neurons, Schwann cells, oligodendricytes, and all the other stuff that's been destroyed. Eventually, however, these attacks become more frequent, and the body's ability to repair itself is overwhelmed, leading to permanent irreversible damage.

So, that said, the problem becomes one of how to treat this illness. The standard CRABS (Copaxone, Rebiff, Avonex, Beta Seron, all commonly-used MS drugs) treatment, and novantrone, and antegrin, are all barking up the wrong tree. They all work on preventing the immune system from attacking. It's not the immune system's fault - somebody left the door open for it to get in where it didn't belong. Close the door, folks, and start working on keeping it closed while you also work on repairing the damage.

It seems fairly obvious to me - macrophages, which cause de-myelination by attacking the neurons, are rather large beasties. A normal BBB is closed up too tightly to allow anything that large access to the brain tissue - heck, macrophages are about the size of amoebae, and far larger than virii or bacteria.

Somehow, in people with MS, the BBB is open. Steroids, a potent anti-inflammatory, can stop an exacerbation in its tracks, by not allowing macrophages to cross the blood-brain barrier. However, this effect is only temporary, and prolonged steroid use is very unhealthy (for one, steroids leach calcium from the body, and enough steroid use can cause osteoporosis and tooth loss).

So far, I've tried several over-the-counter drugs and supplements, and have finally settled on this regimen: Daily, when I wake up, I take one 625mg aspirin pill, one 625mg ibuprofin pill, one 1mg Beta17 estradiol ("Estrofem") pill, one 1000mg Vitamin C pill, and four 300mg Alpha Lipoic Acid capsules, with a 12-ounce glass of whole milk. Whole milk has fat, and the fat helps some things (like the estradiol) dissolve properly (that's what the label, "Take with food" really means - the drug is fat, not water, soluble). I avoid any food for an hour or so, to give this pile of pills time enough to make it to my intestinal tracts, where the fat-soluble portions get absorbed. Eating food slows this whole process down, as the food must start being digested before things hit the intestines.

I take the aspirin and ibuprofin because they are both decent anti-inflammatories, plus aspirin is good for the heart and it's an anti-oxidant. I take vitamin C because it's an anti-inflammatory, and a potent anti-oxidant - the destruction of the myelin layer involves a "free oxygen radical", and anti-oxidants destroy these before they can cause damage. The alpha lipoic acid is a very strong anti-inflammatory and anti-oxidant, and, last, the beta17 estradiol is primarily for hormone replacement therapy, but it also protects oligodendricytes from damage during an MS attack.

It seems to be working. My "test" for this is to watch my gums. I've had gingivitis all my life, and waking up to dried blood on my teeth was a daily occurrence, except when I was on steroids. The gingivitis would return as soon as the steroid dose dropped during the taper-down phase, but it's been two weeks since I tapered down and my gums still aren't bleeding at night.

On other notes, I've actually gotten slightly better than I was before the latest exacerbation. I stumble less, can move my right arm more, lift my right leg more, and can even walk "free" (with nothing to hold on to) now for several steps, though by no means can I walk quickly. Also, my mind seems to be coming back. Before my initial attack of MS, my IQ had been repeatedly measured at 150, plus or minus a few points. After several years, I measured it again - 130-ish. Still respectable, certainly, but not nearly where it had been. Now, however, though I have not yet tested myself again, it sure seems to be getting better. I may not be back to my pre-MS levels, but I feel that I'm improved over 130 by several points at least.

I'm going to a new neurologist on Monday, and will see what his thoughts are on this. Again, it only seems obvious that, to halt MS, you must first prevent any further damage. Stem cells may be able to reverse the damage, but if the BBB is still open, the MS will simply start over again.

Jeannette, still fighting, and seeing some progress

Written by Community Member MsWillow on 4/30/2004.

All opinions are the opinion of the author and not necessarily that of This is MS. The ideas presented in this article have not been verified by 3rd parties.

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Published on: 2004-06-13 (4482 reads)