There is good news and bad news.

The good news (yes, I was surprised there is such a thing as “good news” too!) is that if you have MS, you have a significantly lower chance of getting cancer.  Researchers analyzed the medical records of more than 20 thousand people diagnosed with multiple sclerosis. The study found that for people with multiple sclerosis the risk of cancer was 10% lower than in the control group.  There is some debate as to whether this is due to people changing their lifestyle after diagnosis, but latest thinking is that it is something to do with the condition itself.  (I’ve lost the link about all this, will post if I track it down later.)

Some bad news is that although there is a fairly effective treatment for the “relapsing-remitting” form of MS (Don has the untreatable “progressive” form), the treatment carries some risk of heart damage and quite a high risk of leukemia.  http://www.sciencedaily.com/releases/2009/04/090430101441.htm

More good news – and this is quite thrilling – is that there has been improvement for MS patients who have been injected with stem cells of their own fat tissue.  Not just “improvement”, but an actual REVERSAL of the disease, to the extent that they are seeing regeneration of the myelin sheath that gets destroyed in MS. http://www.privatehealth.co.uk/news/april-2009/fat-tissue-multiple-sclerosis-30465

So we are trying to get Don into an exercise programme, because his muscles are wasting away through lack of use, and if by some miracle there is a chance for him in the future, he needs to be strong enough to actually benefit.

Why did I call this blog “trivia”?  Nothing trivial about it.  Leukemia is devastating, the possibility of a cure is life-changing.

For some time, Don has been pressing me to arrange a trip to Griffith (in the Riverina) because his 97-year-old mother is in a nursing home there, and we haven’t seen her in over a year.  I’ve tried not to be brutal and say, You simply cannot travel any more!  But I had a sudden inspiration, that in fact if there was something drastic such as a funeral, well there actually is a way.

I told Don that I ought to phone his neurologist and discuss getting permission for a course of methylprednisolone if there is a sudden need for Don to leave the nursing home, eg when his mother dies and he wants to attend the funeral.  It would be an 8-hour drive each way plus at least one night away.

In my opinion, methylpred is like a miracle drug for multiple sclerosis.  When Don, bedridden, was put onto a course of treatment last year, he was standing (with assistance) the next day, and was shuffling along the corridor (with a walking frame and two assistants) a couple of days later.  It was unbelievable.

Only problem with methylpred:  It doesn’t last.  Average duration of the improvement is 9 weeks.  And there are considerable side-effects, eg it depletes the body’s calcium (so he is still on calcium supplements 13 months later), possibility of organ damage if used long-term, and the mood swings during the course of treatment are terrible – swings from anger to despair to weeping with joy, emotions out of control completely.  And growing evidence of an actual deterioration in the condition subsequently.

To my surprise, Don didn’t even consider my bright idea.  He just said matter-of-factly, “No, when the time comes, you will have to go with our son and represent the family. I won’t be able to leave here.”

He has accepted the sad reality with his usual equanimity.  Thanks Don, for making it easy on us.

I’ve mentioned the use of Low Dose Naltrexone (LDN) as a treatment for multiple sclerosis, a couple of times in this blog.  It’s new, it’s still experimental and there is no clinical evidence, but there are lots of anecdotal reports from MS sufferers who used it and found improvements ranging from slight, to what some of them term miraculous.

Reason I haven’t been saying much about what effect LDN is having on Don, is because I am all too well aware of the placebo effect. 

Placebo effect means that if you give a person any treatment – any treatment whatsoever – for an illness or condition, then there will probably be an improvement regardless of what the treatment is.  Mind over matter, sort of thing.  The hope and optimism, the belief that there will be improvement – it leads to an actual improvement.  Which is the reason, of course, that when new treatments are being tested, some subjects are always given a placebo instead of the new treatment (without being told), so that researchers can measure what has been caused by the new treatment rather than “beneficial effects caused by the subject’s expectations”, which is the definition of the placebo effect.

Having said all that, it is clear that Don has improved quite a lot mentally.  I know that I wasn’t admitting how bad he was getting, putting a good spin on things and would just say that he was “a bit spaced out” or “sleepy”.  But the truth is that it was getting quite hard to hold a conversation because he would either drift off to sleep or get  what he called “clouded in his mind” and lose the thread of even the most straightforward things.  Well, he has improved so much that I am trying to recall just how bad he was on a bad day.  He listens to conversations with interest and alertness and often joins in, laughs at jokes and wants them re-told to others, chiacks the nursing staff  and sometimes remembers their names, gives sensible advice about such things as whether we should think about getting a new car.  Not all of that every day, and sometimes he is subdued and not terribly responsive, but still a complete turnaround from the zombie-like state he was getting into over the previous months.

I and the family are not the only ones to notice a marked improvement in Don.  Friends who visit occasionally or often, the nursing staff, and even ancillary staff such as the laundry workers who don’t have a lot of interaction with residents, have commented on how remarkably better he is.  Friends say that he is “more like himself now”, those who didn’t know him before are saying that he is a different person.

Only disappointment is that his mobility still has not improved, ie he still can’t walk or stand or sit himself up.  But I also realise that he is never given an opportunity to do any of those things to check it out, or to practise.  They use a lifter to get him in and out of bed, and staff are not going to abandon the lifter and risk hurting themselves on the chance that he might have more strength than before.  So I suspect that he might have improved marginally, but not enough to get him less dependent.

Remember last century when they used to put leeches on sick people?  Oh, wait, it was the century before  last, wasn’t it.  Well, the wheel has turned full circle, and we are back to parasites as a possible treatment for MS.

You can check out this link for yourself   http://ms.about.com/b/2009/03/11/hookworms-a-natural-multiple-sclerosis-treatment.htm

Hookworms, little tiny parasitic worms, are being investigated as a possible treatment for multiple sclerosis. The idea is this: people infected with hookworms experience a suppression of the immune system. That suppression may be enough to slow the rate of relapse or even modify existing symptoms.

What happens in the study, being conducted at the University of Nottingham and funded with 400,000 pounds, is that people with multiple sclerosis will be infected with 25 hookworms through a patch placed on the skin (it is painless). Nine months later those worms are flushed from the people’s bodies. The good news is that it is very safe and very cheap”

The article is followed by the story “Is Worm Soup Our Future” http://ms.about.com/od/newsresearch/a/worm_soup.htm

Hey, if it works, we will do it!  Desperation measures, to be sure, but who cares.  Only, read the fine print before you get too excited, because this is a possible treatment for only the relapsing-remitting form of multiple sclerosis – which Don does not have.  But I asked him today if he would give it a go if it’s possible and he nodded and said, “Anything!”

What is the relationship of sunshine to multiple sclerosis? The answer of course is the same as the answer to almost every other question that is asked about MS: “We don’t know!”

But clearly it does have something to do with MS.  One of the few facts that IS known about multiple sclerosis is that its incidence is lowest the closer you get to the equator, ie the hotter regions.  And conversely, a progressively higher incidence as you move further away from the equator. This is very marked, to the extent that in Australia, people in Tasmania are seven times more likely to get MS than people in North Queensland.  http://www.abc.net.au/7.30/content/2003/s860740.htm

So it’s intriguing that some studies now are giving some evidence that plenty of sunshine can act as a preventative for MS, and that large doses of vitamin D (found in sunlight) can actually help.  http://www.thespeciallife.com/prevent-multiple-sclerosis-with-vitamin-d-daily.html

Hmmmm.  Don in the nursing home doesn’t get outside much.  I used to wheel him outside into the gardens most days, but with his pressure sores they are having to keep him in bed more.  Ah well, if they get him up and into the chair every second day, then I’ll make sure that he gets outside as often as possible.

The neurologist who is managing Don’s multiple sclerosis laughed gently when we asked about LDN, Low Dose Naltrexone.  http://www.lowdosenaltrexone.org/ldn_and_ms.htm  “Oh yes, that is the latest fad cure,” he said.  “There are no proven results whatsoever.”  I told him apologetically that I had looked it up on the net and it seemed to be worth trying.  “There’s certainly no harm in giving it a try,” he said indulgently, “and I’ll write a letter to your GP so he can prescribe it if you decide to try it.”

I hope I haven’t made him sound smug or patronising, because he was neither.  As time has gone on and Don’s condition has deteriorated, he has become increasingly caring and gentle.  He is clearly sceptical about the LDN but won’t stop us from trying it out.

We knew that there have been no clinical trials on LDN.  http://www.mult-sclerosis.org/news/Jun2004/MSSonLowDoseNaltrexone.html  I also knew that naltrexone was used to treat heroin addicts and often used in the treatment of HIV, but these are very large doses, usually of 50 mg – 150 mg a day.  But what we are talking about in Low Dose Naltrexone is 3 mg a day, giving a totally different effect.

I have two main question marks over the use of LDN for us, and neither relates to the lack of clinical trials.  The first is that it is supposed to be mainly effective with the muscle spasms that are characteristic of certain types of MS.  But Don has the progressive form of MS, not the relapsing-remitting form, so I doubt that it will be of any help to us.

The second question mark for me is that although nobody knows the true cause of multiple sclerosis, it has been assumed up till now that it is somehow connected with the autoimmune system attacking itself, and so a lot of treatment has concentrated on suppressing the immune system.  The effect of LDN is to boost the immune function, which goes against the conventional logic.  On the other hand, “conventional logic” has not produced a cure to date, so perhaps that is not relevant.

Amazing results have been reported from the use of “low dose naltrexone” with multiple sclerosis patients.  In 98% of cases, there is no further deterioration in their condition.  I should repeat that in italics, with exclamation marks:  there is no further deterioration in their condition!!!

Naltrexone, the drug they give when someone has overdosed with heroin.  Naltrexone, the treatment for HIV, when given in high doses.  But apparently, this is very different.  It is not just “naltrexone”, it is specifically “low dose naltrexone”, or LDN, and is becoming widely used for a range of medical problems.  A friend has just been diagnosed with terminal cancer of the esophagus, and is being treated with LDN with great effect.

I am looking up as much information as I can get on the internet, and have a contact number to talk to someone in Newcastle who is working with this.

Suddenly we are filled with hope again!

I will find out more about this (possibly) miracle treatment, and put more on my next blog.  But the little I have found is encouraging.  http://www.lowdosenaltrexone.org/ldn_and_ms.htm

When Don had his MS diagnosis confirmed at the MS Clinic at Royal Prince Alfred Hospital in Sydney, we received one great word of encouragement:  Professor Pollard, head of the clinic, said that there was so much research going on in MS that he was confident there would be a cure within two years.  Probably not something that could reverse the condition, however, so it was important to keep healthy, keep up the exercise, and hope to stave off the decline as long as possible.

We clung to that confident prediction, by so eminent a person.  But that was in August 2005, and by August 2007 we were very aware that the two years had come and gone, and still no cure.

But you read the literature, and it seems that every day there is a new cure being touted!  Here are just a few I’ve gleaned over the past week:

    *   A new pharmaceutical compound called MN-166 slows the rate of deterioration markedly http://www.rttnews.com/sp/breakingnews.asp?date=04/07/2008&item=35&vid=0

    *  Caffeine:  Mice given caffeine the equivalent a human drinking of 6-8 cups of coffee per day were protected from developing the animal version of MS  http://www.generef.com/newsstory.rss.html?pid=49903

    *  A new medication (unnamed) targeting lymphocytes (white blood cells) stops MS in its tracks  http://www.reenabled.org/2008/04/07/multiple-sclerosis-stopped-in-its-tracks

    *  MS may be caused by the HHS-6 virus, so can be treated with antibiotics  http://gwbandt.com/antibiotics/why-i-prescribe-antibiotics.htm

    *  You can protect nerve fibres by deactivating protein http://scamparoo.wordpress.com/2008/04/04/deactivating-protein-may-protect-nerve-fibers-in-multiple-sclerosis/

    *  A protein called collagenase-2 looks like a breakthrough success in MS treatment  http://03530.com/2008/04/02/potential-new-target-for-multiple-sclerosis-therapy.html

And so on and so on.

Well, we live in hope, of course. But I did have my faith pinned on that two-year prediction of Professor Pollard,

Everybody has a cure.  There are, in fact, cures galore.  Never mind that the first thing you learn when you get the diagnosis is that multiple sclerosis is “a disease with no known cause and no known cure”.

When Don was first diagnosed I looked up MS on the web, naturally.  And the ABC Catalyst program had coincidentally just repeated a story on George Jelinek and his apparently highly successful strategy for managing MS.  Not exactly a cure, but something that he insisted would hold the MS at bay and stop further progression.  Jelinek believed a strict diet, meditation, and lots of sunshine were the key to arresting MS in its tracks.  http://www.abc.net.au/catalyst/stories/s1048944.htm

I sent off for George Jelinek’s book immediately and followed his rigorous diet to the letter.  It is a drastic diet indeed!  Eliminating saturated fats is the key, and that means no red meat and no dairy foods.  He also believes gluten, ie wheat products, should be avoided.  Add the fact that Don is also diabetic and so we have already excluded sugar.  For us it became not a matter of what he couldn’t eat, but what he could eat.  Well it was not easy, I can tell you.  It drove me to some imaginative cooking and got me right out of my comfort zone in the kitchen.  Because if you cut out all the stuff I mentioned you are basically left with fish, legumes, fruit and vegetables.  It is more do-able than you probably think.  Just replace regular bread and flour with gluten-free bread and soy flour, replace the milk with soy milk – you do get used to it, quite quickly – and find a book of vegetarian meals.

I realise that as visitors we were a nightmare to feed.  Some dear friends bravely came to the party by extending their repertoire to make whole meals that were Jelinek-approved.  My sister Ruth came up with this when we visited:

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Vegetable Goulash with Herbed Dumplings

Ingredients:
20 g (1 oz) butter                                                      2 tablespoons tomato paste
2 onions, chopped,                                                   2 teaspoons fresh thyme
1 clove garlic, crushed                                               1 1/2 cups water, extra
2 tablespoons soy flour                                             2 zucchini, sliced
1/2 cup water                                                            400 g (1 lb) new potatoes, halved
1 carrot, sliced                                                            200 g (1/2 lb) broccoli, chopped
440 g (1 lb) tin tomatoes                                            1/2 cup soy cream
1 stock cube, crumbled

Method:
Heat butter in pan, add onions and garlic, stir over heat until onions are soft.  Stir in flour, stir over heat for 1 minute.  Remove from heat Gradually stir in water.  Stir over heat until mixture boils and thickens.

Combine onion mixture with potatoes, carrot, undrained crushed tomatoes, tomato paste, thyme, combined stock cube and extra water in a 3-litre (6 pint) capacity ovenproof dish.  Bake in moderate oven for 45 minutes.  Stir in zucchine and broccoli, bake for another 15 minutes or until vegetables are just soft.  Stir in cream.

Place heaped teaspoons of dumpling mixture around the edge of the casserole.  Bake uncovered for about 20 minutes, or until dumpl8ings are cooked through.

Herbed dumplings:
Sift 1 cup self-raising soy flour, rub in 20 g (1 oz) butter, then stir in 1 tablespoon chopped fresh parsley.  Stir in 2 tablespoons soy milk and enough water to mix to a soft dough.

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We were straight onto the Jelinek regime after getting the diagnosis.  The neurologist told Don in June 2005 that he almost certainly had MS.  Within a fortnight we were on the Jelinek diet and lifestyle.  We persevered with great diligence for three months.  But then we visited the MS Clinic in Sydney, where that first tentative diagnosis was confirmed by Professor Pollard, the head of the MS Clinic at Royal Prince Alfred Hospital.  We asked him about the Jelinek programme.

His response was, “Yes, I’ve heard of Jelinek and his claims.  There is no evidence for his theories whatsoever.  My advice is to eat what you like, and enjoy your life.”

So that was the end of the fat-free, gluten-free, dairy-free, meat-free diet regime and the  long periods in the sun.

Deep down, I have to admit I think we were wrong to give up so readily.  I think diet may be really, really important in managing MS.  After all, lack of evidence might not mean anything.  It might just mean, “lack of evidence so far”.  And Jelinek does quote some pretty impressive anecdotal figures gathered by a guy called Dr Swank starting more than 50 years ago.  Swank put his MS patients on a very strict diet (similar to Jelinek’s, I think ) but it was so strict that only about half his patients were able to keep to it in the long term.  The impressive thing is, that after 34 years (yes, that is thirty-four years!) those who had stuck to the diet were by and large still managing, and even though their condition had continued to deteriorate it had done so at a very slow pace, while those who had not stuck to the diet were either dead or bed-bound.

http://en.wikipedia.org/wiki/Swank_Multiple_Sclerosis_Diet

I will look up some more links to Swank and more info about Jelinek next time I post.  But for now I have to dash — time to visit the hospital, and see how Don spent the night.

And by the way, Ruth’s recipe was really tasty — I still make it occasionally.