Someone else who seems to be able to deal with the symptoms of MS is Cari Loder, a woman in the UK who stumbled upon something which has turned her MS around. It was sheer luck: she was depressed, the doctor prescribed tricyclic antidepressants which seemed to work together with the aspartame in all the diet cola she drank and the B12 shot her doctor had given her, and hey presto! she was better. She wrote a book about it, Standing in the sunshine (Century 1996) which I understand has been bought by one of the British tabloids (it's that sort of book). Borrow it and read pp.112-120. I am uncomfortable with the fact that she patented this treatment and is very secretive about it. Did Fleming and Florey patent penicillin? Meanwhile a lot of desperate people with MS are trying to guess at this breakthrough.
But a patent application is a public document! It was only a matter of time (read on!)
In April '97, I received an e-mail from a woman in the UK with the name of the tricyclic antidepressent Cari takes. (Her email is here (but see below before popping the pills) without her name or email address since I have not sought her permission.) Alas, this particular antidepressant is not available in Australia. This makes copying Cari difficult (but again, see below).
Some people I know with MS have tried to emulate Cari's success by having B12 shots, taking 250mg DL-phenylanaline morning and night and taking 50mg of Sertraline* (known as Zoloft) in the morning. For two people it has had positive effects. For four (including me) it has had no effect.
Or is it something else about what Cari takes? Is it the caffeine in the diet cola? Is there something about the phenylanaline you get from diet cola? (Diet cola is sweetened with aspartame is made up of two amino acids one of which is phenylanaline.)
I have tried the combination of B12 shots, 500mg DL-phenylanaline and 300mg in the morning and optionally 150-300mg at lunch of Moclobemide* (known as Aurorix). It seems to be of some benefit to me.
(On reading Dr Lindner's paper carefully, he says "increased cysteine clearly suppresses growth of some strains of the bacteria in cultures", and says that L-cysteine or l-cysteine are okay but not dl- or d-. He says "The related compounds d- or dl-cysteine (cystine) might be found but should be avoided because certain bacteria use d-amino acids to make their cell walls". I wrote to him, asking if DL-phenylanaline might be a problem in this regard as well. He said yes, so I have dropped it from my regime. I just drink diet cola now.)
How does this work? I don't think anyone is really certain, but both sertraline and moclobemide affect the neurotransmitters. It's like the nerves in your body being similar to the wiring in your house: the problem with MS is that the insulation is coming off the wires and the electricity has trouble getting through. Playing with the neurotransmitters makes sure there is a lot of voltage, there is a lot of current pulsing down the wires in an attempt to get through.
I accidentally found out how Moclobemide works in, of all things, Time magazine (20.9.97). The article is called The Mood Molecule and it's all about one of the neurortransmitters, serotonin. Moclobemide is a monoamine oxidase inhibitor (MAO) and it "let(s) neurotransmitters circulate and keep stimulating neurons longer than they normally would."
Does it work? Moclobemide has a positive effect for me although I am not sure it works for everyone. I am using my electric scooter much less, I am using my cane much less. But alas I am not running the 100 yard dash (yet!).
Later I came across Cari's Patent application which spells out precisely what her treatment is. It is patent number WO 96/11009 18 April '96 entitled Treatment of Multiple Sclerosis (MS) and other demyelinating conditions using lofrepramine in combination with L-phenylananine, tyrosine or tryptophan and possibly a vitamin B12 compound. I have scanned the document (minus the list of 12 references) and placed it here.
January 2000: One of the reasons to have a website is so people can find you, and that's just what Arthur did. We met over a coffee and he told me about his wife who has MS, and he told me that he had imported some lofepramine from the UK. Why I hadn't thought of that I don't know. So I got my doctor to write a prescription and went to the same pharmacist as Arthur had. It took about 6 weeks and was expensive: $AUS375.00 for 250 70mg tablets.
And I just took it, when I should have begun gradually, and taken steps to avoid the side-effects (the worst of which is constipation). What I should have done was read this (from a woman in New Zealand) before I started.
A pharmacist friend told me that lofepramine is regarded as quite old now, and she had read up on it -- most of it seems to be converted to desipramine (which is available in Australia).
But I was not well-disposed to tricyclics after a couple of attempts. So I did some research on the web, checked out Cari's list (under 'Composition examples' in her patent application), and asked my doctor to let me have another seretonin reuptake inhibitor (SRI), fluoxetine.
March: but this is the second time I've tried a SRI. And a minute's thought would tell you that there can be nothing 'hey presto' here. I just don't know (and I've written that before). So while I wait for the unexpected, I must confess that fluoexetine has the effect of making one calm & mellow... not entirely a bad thing.
The (almost) last word. (pdf document - requires Acrobat reader - free and available here.)
* a doctor's prescription required in Australia.
© 2000 Australian Philosophical Society for the Promotion of Useful Knowledge
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