Category Archives: Health

Life and more…

theres-no-map-for-where-im-going-1

I haven’t posted much lately. That’s because life has been pretty intense and chaotic, and I am still struggling with ill health due to arsenic and lead poisoning. The good bit is that I am slowly detoxing and getting better, but it’s clearly a long term journey to become well so I am learning the art of patience! The bad bit is that Paula and I could not reconcile this, and we’ve split up, after 18.5 years together. Unfortunately things are complicated between us as we try to disentangle so many years of shared life and business, and going through a difficult divorce while extremely ill is no picnic, I tell you.

I hope Paula and I will be able to resolve/finalise things through mediation, but I have been advised that if things end up in court, then any posts I’ve made on social media could be used against me. As a result, I need to take my life out of the public eye. I’ve actually been missing you all – I enjoy sharing my journal posts and what’s going on for me creatively/personally, and connecting with you all on that level. For now, though, I can’t do this.

In the meantime, I’m going to repost some of my older stuff, especially about Deafness and journaling and so on. And since my Auslan course has now finished, (it’s been running for 1.5 years!) I reckon I’ll go back to the start so those of you who didn’t keep up the first time can jump on the Auslan bandwagon, and those who did have some handy revision.

Also, I’ve decided to share my studio, as I’m only in there a few times a week and money is kind of tight these days. If you’d like to rent a space at the Abbotsford Convent for four days a week and more if you are an afternoon/evening person, see my ad over on Creative Spaces.

Breast cancer

When my mum was diagnosed with breast cancer, I offered up my services to do some reading / cross-referencing for her, and look into the various natural options she had to augment the conventional medicine path she took (mastectomy and chemotherapy).

You can read here about how she managed chemotherapy using ice packs, in order to avoid losing her hair.  She still has a gorgeous head of hair and even though she’s in her sixties, she’s not grey at all.

Since then, I’ve been asked a few times to forward all I know/read about breast cancer to other people who have been diagnosed, so I thought I’d put it on my blog for all of you to access.  I need to say here, that I was following my mum’s path, so this reading is not the same as I would have done if it was for myself.  I’m not a doctor, and I can’t guarantee this will help at all, but I’m still sharing in case it does.

Books to read

These are some books you might like to read if you have been diagnosed with cancer:

Ian Gawler’s books – Ian Gawler turned around his cancer naturally after he was given three weeks left to live.  He now runs retreats and has written several books.
Terry Wahls’ books – Terry Wahls cured herself from MS through a diet she devised based on animal studies. The interesting thing about her book is that it talks about how to eat so that you can get your cells to do the right thing.. and cancer is all about cells doing the wrong thing.
Sandor Elix’s book Wild Fermentation – about eating fermented food.. apparently all cancer patients have incorrect flora in their gut and fermented foods can fix this.

 

Stress management

In his books, Ian Gawler talks about the importance of stress management, and recommends meditation as a valuable tool.  He says that a high percentage of people with cancer have it primarily because of stress.  He outlines a classic cancer profile which shows a person having a series of stressful events, managing them ineffectively, and then finally THE stress-event which occurs some time before the cancer is diagnosed.  My mum said she recognised herself immediately in that profile.  If you suspect that stress has played a role in development of your cancer, it’s worth getting on top of the situation, looking at how you handle stressors and what you can do differently so that you aren’t carrying the tension within you.  This may be the most important step you can take towards prevening a recurrence.

 

Minerals

In Australia, our soil is known to be deficient in minerals, as after the last ice age, when melting run-off deposited minerals over the soils of most of the world, Australia missed out.  In particular, our soils are deficient in magnesium.  This means that we Australians cannot get all our minerals from eating regular food.  Terry Wahls talks about the importance of eating seaweed regularly for trace minerals.

Pat Coleby, a farmer who specialises in animal health through soil health, discovered that when she arrived in Australia after years of farming in England, her animals were sickly.  Once she remineralised the soil, the health of her animals improved dramatically, and she is now sought after by farmers across Australia to help them sort out their soil and livestock health.  It seems sensible to assume that if animals are so affected by the mineral balance in soil, it is likely we humans are too.

In her book, Take Control Of Your Health Elaine Hollingsworth draws a strong connection between the correct intake of minerals, and your body’s ability to detox chemicals.  Given that cancer is known to be strongly related to an overexposure to toxic chemicals, this is relevant to people with cancer.  Hollingsworth gives as an example that areas with high selenium in the soil have much lower rates of cancer generally.

Hollingsworth advises taking magnesium and iodine – taking these two together are supposed to be particularly effective at helping your body to detox chemicals.  Selenium is often deficient in people with cancer, she says.

 

Detoxing from chemical exposure

Knowing the connection between chemicals exposure and cancer, it may be worth supporting your body to detox as effectively as possible.  A first step is to consider taking minerals, as outlined above.  Terry Wahls advises clay baths (she soaks her feet daily in water with magnetic clay) and says the effect is profound.  The clay is supposed to work like a magnet, drawing out minerals.  I can’t vouch for its effectiveness but I do have a lot of respect for Terry Wahls.

Another way to detoxify is through sweat.  Exercise that makes you sweat, and/or regular sessions in a sauna or steam room can do this.  I do this weekly and I believe I feel better for it.

One of the things I remember reading, though I’ve absolutely no idea where and so can’t vouch for any evidence to back this up: “If you are caring for a cancer patient, do them a favour and wash their dishes by hand for them.”  The implication was that dishwasher chemicals are particularly toxic and that they may leave a slight residue on the plates (I know I’ve seen traces of white stuff on our dishes occasionally)… and that that when you have cancer, this kind of extra chemical load can be too much.  If you have a dishwasher, maybe you want to run your dishes under hot water before eating from them, and think about what other chemical loads you have in day to day life.

 

Some thoughts about diet

My mum bought Ian Gawler’s recipe book.  Since I’ve done a lot of research into nutrition, I was interested to see how the ideas in his book cross-referenced with my other knowledge on the topic.  I admit I have some reservations about the diet advised by Ian Gawler.  Which is not to say I don’t think he’s a fabulous man doing very important work.  I just think the diet he suggests may not actually be the optimal one to cure cancer.  But we don’t, yet, have a better guide, so anyone diverging from the path he has set out will be taking an experimental road.  If it was me, I would definitely experiment.  Here’s a few of my thoughts in response to his recipe book:

In the 28 day diet, I notice one of the meals includes sauerkraut.  As you’ll know from the Wild Fermentation book, sauerkraut is an amazingly healthy food.  Both scientifically and culturally, it’s understood that the health-giving benefits of sauerkraut come from the fermentation of cabbage.  Through the fermentation process, the cabbage provides more vitamin C and other vitamins, making it particularly nutrient-dense and rich in pro-biotics.  However, in the book, Gawler suggests you make your own sauerkraut by cooking some cabbage with apple cider vinegar.  While this might taste like sauerkraut, it seems a wasted opportunity to eat a truly valuable and nutritious food.

The book suggests that you make your own yeast-risen bread, while my understanding is that from a nutritional point, yeast-risen bread is not good for you at all, and sourdough is essential to properly ferment the anti-nutrients (such as phytates) from the grains.

The book advises against all fat, while my understanding is that more recent research into fats by Dr Mary Enig has shown that while “bad” fats are extremely bad for us, good fats are not only harmless but are essential for proper digestion and absorption of nutrients.  The Gawler book seems to blanket all fats as bad, despite mentioning somewhere in there that Omega-3s are important.  Yet the presence of Omega-3s in the diet is not addressed.

The book talks about avoiding fruit in vegetable juices, citing the reason that fruit takes longer to digest and so ferments in the stomach (or something like that).  That doesn’t make a lot of sense to me.  All fruit contains some lactobacilli, the bacteria responsible for the fermentation of sauerkraut.  Surely if the fruit does “ferment” that would be a good thing rather than a bad thing.  But I think digestive process actually works differently to that.  Maybe I’m wrong, but I do wonder how they measured transit time for fruit versus vegetables and made the distinction that they are best consumed separately.

Frankly the whole diet seems a bit made up to me.  Which is not to say it doesn’t work. But I’m left wondering if it works because it eliminates all processed food, and for people who have cancer in part because of consumption of a lot of refined/processed food, this may be key to their recovery.  Anyway, I’m not totally knocking the Gawler diet approach. Maybe the book is just not well written or doesn’t explain the principles well. Or maybe it works for reasons other than those cited.  But if it was me, I would make some changes to the diet he advises before embarking on it.

 

More info

I’m afraid this is as far as I went on behalf of my mum and her breast cancer.  If you have more info to share about managing breast cancer specifically or cancer in general, do leave a comment on this post.  May good health be with you…

 

You don’t have to lose your hair with chemotherapy

You don’t have to lose your hair with chemotherapy

Meet my mum, Jan.  I gave her this painting for Christmas.  It’s not meant to be a perfect likeness but it is a very lovely representation of her.  And her hair really IS like that, even though she’s 62!  Happily for me, I think I’ve inherited her hair genes.  Her mum (my grandmother) didn’t go grey until she was about 70, and if nothing ruins my mum’s hair, that will probably be her story too.

A couple of months ago, Jan was diagnosed with breast cancer.  She went straight in for a mastectomy and was frightfully brave about it.  She started anti-hormone treatment, which reduces the chance of a recurrence of her kind of breast cancer significantly. Then for the very difficult decision about whether she should have chemotherapy or not.  Chemo does reduce her chance of a recurrence by few more percent, and eventually she decided she’d have to do it.

Jan is not a vain person.  It’s probably her influence that I’ve no interest in shaving my body hair, wearing make up or perfume, or restocking my wardrobe every season with the latest fashion.  But Jan does love her hair, and for good reason.  It’s gorgeous, naturally gold, silky, shiny and it always smells good too.  She doesn’t mind “feeling shit for six months”, as she said about the chemo, but she does mind about losing her hair.  However, she figured it’d be better to be alive and sans hair than dead in a few more years from a recurrence, so she took a gulp and signed up for the chemo.  And she bought a wig.

But the day before her first chemo treatment, someone mentioned on the phone, “Did you know if you put ice on your head during the chemo treatment, your hair won’t fall out?”  Well it sounds like just another lot of spin, but my mum was definitely interested enough to give my dad a poke.  He jumped online to try and work out whether there was any truth to this.  He ended up staying home from work, and spent the whole day on the net.  What do you know – it’s for real!  Some hospitals overseas actually use this method.  You have to apply ice packs for about half an hour before treatment begins, and replace them every half an hour with a fresh pack, until four hours after the treatment is finished.  Most people can’t stand it and give up after the first or second time – you have to do it every time you go in for chemo therapy.  But if you can hack it, there’s an 80% chance of keeping your hair!

You need special ice packs though.  You can’t just whack some freezer blocks on.  You have to cover every single part of your scalp completely, evenly, for the entire time.  Luckily, special head-gear has been manufactured for this purpose.  My dad jumped on the phone to work out where he could buy some, but unfortunately the only company selling them in Australia was in Perth, and we are based in Melbourne.  (To give you perspective, if we were to drive to Perth it would probably take us nine days.  Others would manage it quicker, but that gives you an idea, in case you don’t know Australian geography.)

My dad got a quote from a courier – $1800 to ship them overnight, to get them in time for the first chemo treatment.  Ouch.  But my brother had a better idea.  He put an ad on Gumtree: Free return flight to Melbourne from Perth, plus expenses, for someone who will deliver the icepacks.  He got a call within ten minutes, and several hours later a girl walked in the door of my parents’ place, carrying a large box of head-shaped ice packs.  My mum sat up late, chatting with her, and ended up inviting her to stay the night.  Next morning, as my mum left for chemo, the girl was poking around in the kitchen, helping herself to breakfast.  You got to love my family and their problem-solving skills.

Luckily my dad is the ultimate problem solver, because when he rocked up at the hospital with his chest of icepacks and a huge box of dry ice, ready to administer to my mum during her treatment, the hospital wouldn’t let them in.  Health and safety: someone could burn themselves on the dry ice.  Too dangerous.  Two and a half hours of arguing later (my dad is not one to give up – he always sounds perfectly reasonable and respectable, and I would hate to be his adversary.. he probably just wore them down) they finally conceded that my dad could keep his dry ice in the car, and he’d have to go out every half an hour to fetch the replacement ice pack.

When I visited later in the day, it was as if my mum was giving birth, and my dad was timing her contractions.  He was watching the clock, fiddling with his thermometer to make sure each ice pack was exactly the right temperature at the time he applied it, flexing the packs to make sure they weren’t too rigid.  As I walked in the door, my mum said, “I can’t talk for the first five minutes – it hurts too much.  After that I’ll say hello.”  I made myself scarce and my dad fitted the fresh icepack.

Two weeks later, her hair was scheduled to fall out.  But it didn’t.  She’s still got it.  She’ll have four chemo treatments all up, and each time she’ll have to do the icepack rigamarole, and each time she’ll have a 20% chance that two weeks later her hair will fall out.  But I’m crossing my fingers, for her sake, that it holds.

So.. the moral of the story is this: if you are having chemo and you really and truly and deeply don’t want your hair to fall out, there’s something you can try.  The hospitals and doctors here should be telling us about this option, but they won’t because they don’t want the hassle of icepacks and dry ice cluttering up their chemo rooms in the hospital.  If you want it though, you can make it happen.  But I’d say it gives a new meaning to the term “icecream headache”.

Natural treatment for ankylosing spondylitis and inflammatory arthritis

When I was diagnosed with Ankylosing Spondylitis (AS), and told by doctors it is an auto-immune disease, a form of inflammatory arthritis, for which the cause is unknown, and treatment consists of ‘heavy drugs’, I was devastated.  Google searches didn’t yield up more information, and it took me a long time to uncover effective, natural ways of treating the disease. In the process, I also discovered that the causes are in fact known to some researchers. This article covers the best of what I know about AS and how to manage it.

(By the way, please read all the way to the end before you leave a comment.)

Natural Treatment with Vinegar

After my first post on my old blog about AS, one of my readers, John, left a comment telling me that drinking apple cider vinegar removed all his symptoms of AS. This has been life-changing for me. Vinegar is the best treatment I have found, and after a year on vinegar, I still feel great.

It seems vinegar was suggested by Margaret Hills, back in the 1950s, in her book about inflammatory arthritis. From her nursing training, she understood that inflammation is a build up of acid. It’s the acid that gradually damages our joints if we don’t get rid of the inflammation. She also knew that when you consume vinegar, it becomes alkaline in the body. So her theory was that the alkaline vinegar would neutralise the acidic inflammation. Lots of people with all kinds of inflammatory arthritis have found relief this way, thanks to her book on the topic.

Instructions for how to take apple cider vinegar:

Use live, raw vinegar, with the cultures in it. If you see little strings or sediment, that’s a good sign. Any kind of vinegar is fine, though apple cider vinegar apparently offers many other health benefits. I personally make my own vinegar by fermenting kombucha for longer and prefer to drink that. It’s full of probiotic cultures and kombucha is also reputed to have a wonderful detox effect.

Put 1-2 tablespoons of vinegar in a glass and top up with water. Never drink vinegar straight or you’ll burn your insides. Drink, and follow immediately with plain water to rinse out your mouth. Leaving vinegar on your teeth 2-4 times a day can erode the enamel on your teeth, so always wash it off. You can also drink it through a straw, taking care not to get vinegar on your teeth. This a bit intense at the back of your throat.

When you first start taking vinegar, it will feel very sour, so put less vinegar in your glass, and gradually work up to larger amounts.  My kombucha vinegar is much milder than the apple cider vinegar from the shop so I put more in the glass.  I aim to have it as sour as I can stand.

Margaret Hills suggests adding honey, and using warm water so the honey will dissolve, to make it easier and pleasanter to drink. I prefer to use stevia drops instead, as they have no calories.

I’ve found I do best if I have 4 glasses of vinegar-water a day. I have a glass on rising, another mid-morning, one mid-afternoon, and a final glass before or after dinner. These days I put it all in a one litre drink bottle along with 5 drops of stevia and a teaspoon of Vitamin C. The Vitamin C helps me fight off colds – it’s not for the AS. But I’ve noticed that having it in my drink bottle is more effective than taking a single dose of Vitamin C morning or night. I have noticed with the vinegar water that if I drink the entire litre, say, in the morning, it works just as effectively as if I spread it evenly over the day. But I find this makes me feel a little nauseous on an empty stomach so it’s best for me to sip it slowly after food.

My favourite way to drink it is with this recipe I copied from a Braggs drink:

In a one-litre bottle place 4 tbsp apple cider vinegar, ginger infusion (I grate ginger and steep it in boiling water then strain – I keep a bottle of this in the fridge ready to go), 40 drops of stevia, and then top it up with water. This is delicious like a soft drink – but a bit intense for every day. I use only 5 drops of stevia most days.

How long does it take to work and who will it help?

It took about 5 days before I started to feel better. After that, for the next 10 days, every day was a little better. Apparently it takes a whole month to get the maximum benefit of this remedy.

This remedy helps all kinds of inflammatory arthritis, including rheumatoid arthritis and reactive arthritis. It should remove inflammation, so pain associated with inflammation should be reduced or disappear. It won’t help pain that is caused by damage to your joints that has already occurred though.

Natural Treatment with Diet

Before I discovered the vinegar treatment, I managed my AS by eating a starch-free, lactose-free diet.  Since starting vinegar, I’ve found I can eat starch and lactose, and my symptoms are better than they were when I followed the diet, but some readers of my blog have reported that they do better by following both the diet and the vinegar treatment, or they prefer the diet than the vinegar.

A starch-free diet is a restrictive, difficult regimen to follow, but the pain and degenerative problems caused by AS can be a very good motivator if the diet works.  Unfortunately starch-free diets are pretty-much unheard of in our society, so it can be challenging to work out exactly what you can eat and what you can’t. I found that eating only the tiniest amount of starch (a single breadcrumb, or a pea) was enough to set off my symptoms dramatically, so it took some time of following a very strict diet, and gradually adding in one food at a time, to discover what foods I could eat and what I couldn’t.

Everyone’s body responds differently to the diet, so if you are trying to make this work and struggling with it, I would suggest starting with a very limited diet of foods known to be starch free, and after the pain has reduced, add in one new food at a time, observing your pain levels the day after adding in the new food. Some people tolerate lactose fine, others need to eliminate that from their diet as well. I will list here what I ate on this diet as I found this sort of info on others’ blogs incredibly helpful in designing my diet.

I could eat:

Rice: glutinous rice – both black and white. Glutinous rice has a different-shaped starch molecule than regular starch, and in me it didn’t trigger my symptoms.

Vegetables: broccoli, cabbage, cauliflower, leek, brown onion, lettuce, rocket, celery, spinach, silverbeet, red and yellow capsicum, carrot, pumpkin, fennel, zucchini, avocado.

Fruits: tomatoes, berries, papaya, grapes, apples, pears, pineapple, melons, passionfruit, persimmon, mango, coconut, citrus fruits (juiced and well peeled are fine but avoid the white pith).

Protein:
All unprocessed meat
Seafood (unprocessed only)
Eggs
Blanched almonds
Pine nuts
Sesame seeds

Dairy:
Butter
Dry curd cottage cheese
Milk, cream and yoghurt to which I had added 10 drops of Lacteeze per litre, and left to sit in the fridge for 2 days. Lacteeze is a product consisting of lactase enzymes, which over the course of two days, consume the lactose in the milk and convert it to glucose. The resulting milk is pleasantly sweeter as a result. Be sure to purchase Lacteeze drops, not a tablet or powdered form, which may contain starch.

Condiments:
Sea salt
Mustard
All herbs
Garlic infused oil (remove garlic before serving)
Spice infused oil (remove spices before serving)
Fish sauce,
soy sauce,
tamari
Vinegar
Honey (a little sugar is ok)

Fats: olive oil, coconut oil, butter, lard, animal fat.

I couldn’t eat:

Grains (wheat, non-glutinous (normal) rice, spelt, corn, etc)

Starchy vegetables & fruit:
Peas
beans
potato
sweet potato
beetroot
banana

Processed meat such as sausages or salami unless I could guarantee it was made without starchy ingredients

Nuts or seeds other than blanched almonds

Dairy products with lactose:
Milk
Yoghurt
Soft cheeses
White cheese 

Thickened sauces such as oyster sauce or ketjap manis, or processed curry pastes

Condiments:
Ginger
garlic
pepper
spices.

A typical day of meals:

On rising: 1 tsp cod liver oil in dissolved in freshly squeezed orange juice. (Fish oil apparently helps arthritis.)

Breakfast: Lactose free yoghurt, milk and cream (made the same way as yoghurt), muesli made from finely chopped activated blanched almonds, dried coconut, black sesame seeds, and dark coloured fruit such as berries, peaches, apricots, papaya.

Mid morning: Vegetable juice made with kale and beet leaves from my garden, beetroot and apple, or a cup of warm bone broth (stock) with fish sauce and vinegar added.

Lunch: big plate of vegies or salad, with some eggs, meat or fish, topped with at least a tablespoon of butter.  Sometimes soup. Sometimes black glutinous rice with eggs and greens.

Mid afternoon: Activated blanched almonds and dried fruit.  (If I didn’t eat almonds twice a day I crave carbohydrates.  And I can’t get through the afternoon without a snack.)

Dinner: Another big plate of vegies, often a roast or a stew, with meat or fish, and plenty of butter.

Dessert: I often craved something in the evenings, and when the cravings were high, I’d eat either a bowl of fruit with lactose-free cream, or else I have a homemade icypole made with egg yolk, lactose-free cream or dry curd cottage cheese, strawberries and honey.

Drinks: through the day I drank two glasses of lactose-free milk, 1-2 glasses rejuvelac, 2 or more glasses beetroot kvass, and sometimes I had a herbal tea such as roibos or the korean corn tea.

About glutinous rice

I read on an AS blog that glutinous rice is made up of a different form of starchy molecule – amylopectin, while most starchy products are made up of amylose.  Apparently klebsiella bacteria can consume amylose but not amylopectin!  Glutinous rice is made up of amylopectin, not amylose, so theoretically it should be safe for those of us with AS to eat.  My first attempts at this failed – I bought a black rice which I thought was glutinous rice, but now I think was actually not glutinous.  At first it was fine but after a while my klebsiella evolved and I began to get symptoms from it. I then sourced a proper glutinous rice and had no symptoms from eating that over a longer term.

Diet issues

While once I had adjusted to the diet, I was okay on it for a year, but after that I think some stores of nutrition became depleted, because I found it increasingly difficult to follow, especially living without wheat.  I  noticed that when I didn’t eat wheat for a long time, I began to get desperate cravings.  It felt like having low blood sugar.  If I ignored it, my symptoms become progressively worse, so that I became extremely ill.  If I broke my diet and eat wheat, I felt better, so much better, and all my cravings would go away again, for about ten days. When I tried to quit dairy I found the same experience. Some people seem to do fine on this diet and don’t report the problems I felt, and I never did get to the bottom of how to handle it.

About Ankylosing Spondylitis And Its Causes

AS is a form of inflammatory arthritis, where your joints become inflamed. When you have the fluid of inflammation sitting around your joints for long enough, eventually that liquid erodes the cartilage that protects your joints.  Once the cartilage is eroded, the damage is irreversible, and also very painful.  So it’s important to treat the AS in some way – leaving it untreated will eventually lead to permanent joint damage and pain.

When Google searches for natural treatment for AS didn’t yield up anything for me, my family urged me to do some proper medical research.  My sister showed me how to search online medical journals, to see what the very latest research was for AS.  I also noticed that AS was often grouped with other auto-immune diseases such as MS, and broadened my search to see what was helping auto-immune diseases in general.  I started making a habit of trawling the medical journals at night once my son was in bed. If you’d like to read more about how to DIY your own medical research, I’ve written about that here.

It took me two months, but eventually I found IT – the answer. Here’s the real deal on AS.  There is a rheumatologist in the UK, a Dr Alan Ebringer, who has been researching AS for 35 years, and has published nearly sixty research papers.  I have read several of his papers and can see how he slowly built up a picture that explained AS and how to treat it through diet.

Ankylosing Spondylitis (AS) is a form of reactive arthritis that follows an infection by the bacteria klebsiella pnuemonae.  The disease only occurs in people who have the HLA-B27 gene (which I do).  Although 5% of AS patients do not have the gene – Ebringer thinks that the disease in these patients is actually a different entity.  Klebsiella pnuemonae is remarkably similar in molecular make up to the HLA-B27 gene.  Hence, when the body makes antibodies to klebsiella, the antibodies also

Klebsiella is in the digestive tracts of 40% of people, and tends to be an opportunistic bacteria that creates disease in people whose immunity is lowered.  I now believe that I came down with a klebsiella infection in May 2008, at a time when my immune system was in very low state, just before I changed my diet to traditional foods.  I had a very sudden onset of high fever, chills and terrible cough, which is consistent with the symptoms of community-caught klebsiella infection.   I was so ill that I still clearly remember the day that I came down with it.  It took me three months to recover, and despite visiting the doctor and being suspected as having whooping cough, the tests came back negative for this.  I now know that commercial labs don’t have a test for klebsiella, which explains why I wasn’t diagnosed at the time.  Several months later I started experiencing symptoms of AS.

If klebsiella could be eradicated from my digestive tract long term, it’s likely that my immune system would register the invader as gone, and would stop attacking the B27 genes.  However, killing them with antibiotics doesn’t help, because the bacteria is so prevalent in our community that they tend to return.  Sulphasalazine is a drug with (often) unpleasant side effects that is commonly used to treat AS.  It kills klebsiella, which is now thought to be the reason for its (somewhat) effectiveness.  However, when sulphasalazine is discontinued, symptoms tend to return within some weeks or months, likely because the klebsiella have recolonised the digestive tract.  Klebsiella feeds on starch, so removing their food source in my digestive  tract can starve/subdue them, resulting in a lowered immune reaction.  When we eat starch, some of it tends to remain undigested in the digestive tract, creating in an abundant food source for the klebsiella.  Clinical experience has shown that low starch diets help all patients with AS.  Lactose is a secondary food source for klebsiella so elimination of lactose is also essential for some people.

In clinical practise, all 600 of his patients have shown high levels of klebsiella, and those who have managed to adhere to a low starch diet (reduced intake of flour and potatoes) have shown a significant improvement in symptoms, although damage done by the disease cannot be undone.

Crohn’s disease is also associated with AS.  Patients with Crohn’s also have antibodies to the klebsiella bacterium.  It is thought that Crohn’s disease and symptoms of Irritable Bowel Syndrome (IBS) are part of the AS spectrum.  Low starch diets also help people with Crohn’s disease.

One of Ebringer’s patients, Carol Sinclair, who has both AS and IBS, has written a book, The IBS Low Starch Diet, which reveals how to manage this diet.  She suggests eradicating all grains, cereals, lentils and pulses from the diet.  If symptoms remain or recur, then eliminate rice and potato products (including sweet potato).  Should symptoms remain or recur, then eliminate numerous other foods which include low levels of starch, including cooked vegetables and spices.  There is a simple test to determine the starch level of a food.  Buy iodine from a chemist, and place a drop on the food.  If it contains starch, the colour of the iodine will change.  It darkens from orange to shades ranging from inky blue to black.  Some fruits and vegetables that are picked unripe (such as many found in supermarkets) contain high levels of starch, but have no starch when picked at full ripeness.  Some vegetables develop starch in cooking but are starch-free in their raw state (actually the starch is present in the raw state but shielded by an “envelope” that goes through the digestive tract undamaged; cooking destroys the envelope and releases the starch).  The iodine test assists in determining which foods are safe to eat.

The goal of the diet is to find out which and how much starch needs to be eliminated to maintain a pain-free, symptom-free life.  Not everyone needs to eliminate all starch.  One AS sufferer reports that after a strict no starch diet for 5 months, eating only meat, fish, vegetables, salad and fruit, he has been able to reintroduce bread, but cannot eat pasta, potatoes or rice.  Carol herself has found that over time she has needed to eliminate more foods in order to keep her symptoms under control.

Following a low starch diet generally results in remission from AS and symptoms, but is not a “cure” for the disease, since once we have antibodies to klebsiella, they are always able to attack the B27 gene.  It’s a matter of encouraging the immune system to register that there is no threat from klebsiella at this time, to minimise antibody activity.

When I started eating a no-starch, low-lactose diet, and the difference was remarkable.  All sorts of weird pains and symptoms disappeared instantly (e.g. I’d twisted my ankle some time before, and had pain in my foot for months – this resolved itself immediately when I changed my diet).  At first the changes were very difficult, and I found it hard to feel satisfied after a meal.  Now I accept that without grains and starches to fill me up, I don’t get that really “full” feeling after a meal, but my food DOES give me the energy I need to carry me through to the next meal.

A bit more about AS

Thanks to a suggestion by someone who commented on my blog, I bought and read Micah Cranman’s book / DVD package.  I would recommend this resource to anyone with AS, though I wouldn’t go as far as to say that my AS is in remission as a result of his book.  My AS is not in remission at all, it is simply managed through drinking vinegar.  The diet is the same as the one I’ve already described here on my blog (for free) – starch free.  Micah does go into a bit more detail about a few ingredients which I was previously unable to find out whether they were starchy or not.  I found that helpful.

He also advises that a first step towards improving your AS is to take fish oil – he recommends krill oil.  I went out and bought some and started taking it, but had no improvement at all as a result.  But then I realised that I already take cod liver oil every morning, and probably this fulfills the same function.  So I’ve probably already got the benefit that can be had from fish oils.  But a note to those of you out there with AS, experiment with fish oils.

I’d love to hear from you.

Since I started telling people about AS, I’ve discovered almost everyone seems to know someone who suffers from the weird problems of joint pain, digestive troubles and skin troubles.  Or they know someone who has already been diagnosed with AS.  Since rheumatologists here in Australia don’t seem to know about Ebringer’s research, feel free to spread the word and let people with AS know about this article.  Ebringer has started a forum for people to share their progress and diet tips, and it’s a great place to start.  Carol Sinclair’s book is another good starting point.

If you have AS or know someone who does, please leave a comment to share your story. I sometimes get people asking me to give guidance or help them with their condition. Sorry, but I’m not a doctor and can’t do that. The purpose of my blog is to give you information so that you can use it to help yourself.

DIY Medical Research

I have blogged here about my own journey with Ankylosing Spondilitis (AS).  When I was first diagnosed I jumped onto Google and the results were depressing.  Even with a couple of hours of searching I couldn’t seem to find a natural way to treat my condition and side effects of the drugs I read about looked dreadful.  My family, however, encouraged me to do real research, medical research, not just play around on google.  At first I was intimidated and daunted, but finally I got into the swing of it.  And boy am I glad I did!  It took a few months but eventually I discovered both the cause and a method of natural treatment for AS.

What I’ve done now is to write up how I did it, in step by step instructions, to help other people tackle their own research for medical condiions.  You may never find something as conclusive as I did, but you may be able to design your own treatment plan based on results from a number of animal studies and other theories about your condition.

Inspiration

Why do your own research?

  • Animal studies can be 30 years ahead of human studies – you may find ideas you can experiment with even though they are not established practise.
  • Practising doctors don’t have much time for research, and may not be up on the very latest discoveries.
  • There may well be published studies showing effective treatment for your condition, but they may have been dismissed by the medical establishment for inappropriate reasons, such as they don’t respect the individual reseacher because they’ve never heard of that person, or the method of treatment would cause the pharmalogical industry to lose money so they pressure doctors to ignore it.
  • You, because you have the most to gain, are likely to care a lot more and hence do a better and more thorough job of this than someone for whom it is a theoretical exercise.

Doing your own research can make a huge difference!

  • Dr Terry Wahls is a medical doctor in the US with multiple sclerosis.  She knew that animal studies are way ahead of human studies, so set out to comb the medical journals and find out all she could about her condition.  She found a correlation between certain nutrients and brain function, and designed for herself a diet that would cause her brain cells to work properly.  She translated mouse-sized dosages into human-sized meal portions, and experimented on herself.  She has, incredibly, gone from being bedridden with MS to being able to ride a bike and run.  She gave a TED talk which is fascinating.    If she can do it, so can you.  It was she who inspired me to do my own research and tackle my problems directly.
  • Research has helped me with managing my condition: ankylosing spondylitis (AS).  The standard line from rheumatologists here in Australia is that no-one knows what causes it, there is no effective treatment, though symptoms can be reduced significantly with drugs, which have some nasty side effects and are quite damaging to the body.  By doing my own research I discovered that there IS someone who has researched AS and published 65 research papers on the topic!  He found both cause and a method of treatment which is now helping me.  When I bring his research to the attention of the rheumatologists I see, they dismiss it and say it’s a coincidence that diet helps my condition.

Getting Started

Make time for research

I suggest you allocate an hour, maybe three or four times a week, to do some research.  You should probably think in terms of spending at least a year like this – it may seem like an awful lot of time, but a few hours a week for a year isn’t really vast, and in the end, it’s your life that’s on the line, and you may well turn up something that will help enormously.

Ask yourself questions

Get yourself a notebook, or start a file, and write down a few questions.  Plan to start with a handful of specific questions:

  • Get a general understanding of the mechanism of your condition.  What is known about it?  What characteristics are involved?  You probably already know a fair bit – jot down what you know, but don’t assume it’s correct.  Write a list of things you know about your condition that you should cross check.  And as you are researching and learn more, add to this list.  Create a list of confirmed items you know about it and a list of unconfirmed items.
  • Write down your research goals in the form of questions.  You probably want to know how to manage key symptoms, whether they can be prevented, what causes your condition, whether it can be cured…
  • Write a list of drugs and conventional treatments you know about, including what you are currently on, have been on etc.  For each of these you should find out how various doses affect people, their efficacy (how well they work), and what side effects are involved  Also check into long term effects of taking each drug.

As you research, add to your list of questions.  It may seem impossibly, overwhelmingly long, but don’t be put off by that.  Expect research to take a long time, and just slowly work your way through it.  At the start, aim to get a bit of an overview, a bit of info to start your answers to each question you have already.  Then pick an area to go into in depth.

Where to research

Pub Med is a website that publishes abstracts (summaries) from published research papers.  This is a great place to start.  If you find the abstract from an article that is interesting, note it down and make note of the authors too.  If an article is particularly interesting, find a way to read the entire article.

The Cochrane Library publishes reviews of medical research.

British Medical Journal is another place to look.

Universities are great because you can search for published articles without paying any fees, and you can generally read the whole article.  While I was researching, my sister, who was studying at Melbourne Uni, let me log in using her account.  She helped me find the correct webpage to enter my search terms, and from there I went solo.  If you know someone who works or studies at a university, who is prepared to let you use their account, this is a very helpful way to go.

Search online for medical journals that relate specifically to your condition or a group that your condition is a part of.  For instance, I checked out rheumatology journals.

Google and the internet in general is a good way to get broader information.  For example, to understand lactose and its presence in various dairy foods, I used google to gain a layperson’s knowledge, and then cross checked a few snippets of this new knowledge with published articles.  Remember that anything you read on the net may be invented, or written by someone who doesn’t know what they are talking about, so take it with a grain of salt, but it’s worthwhile because a lot of information has been translated into layperson’s language.

Research process

As you read abstracts and articles, you’ll probably find you don’t understand a lot of it.  Don’t worry about that.  Just let it wash over you, and trust that if there’s something interesting, it’ll stand out.  If you do find something that seems interesting, go back and read it a few more times, maybe look up a few of the words involved, and see if you can write your own version in normal English.  This will help you make sense of it.  Over time you’ll probably find you start to understand more, as you become more familiar with the terms used and the details of the condition.

So, as you search for articles, make notes the whole time.  If you find anything interesting, jot it down in your file, or copy over the entire abstract.  My dad, when researching, if he finds an abstract that is interesting, prints out the entire article to read later, while in the car or during other dead time.

If you find an article that shows promise, note down the authors and do a search for each of them individually, to see what other papers they have published on this topic.  This was what uncovered it for me.  I found an early article into the role of klebsiella in AS, and when I searched for other articles by the author, I not only turned up his much later research papers in which he had conclusively announced the cause of AS, but I also discovered that he had founded a website which was a forum for AS. This was a wonderful resource for me.  So check out your authors, both in published journals and on google.

As you read, you’ll come up with more questions.  Write them down.  Your list of questions may seem impossibly long.  Don’t lose heart.  Just plod.  Every now and then read over what you’ve written, letting your mind make new connections and ferret out new questions.  Write down theories for yourself, and then attempt to prove/disprove them.  Use your body as a human guinea pig.  If you find some ideas that are unlikely to be harmful to try out, give them a go, and keep notes and charts.

Keep a list of your search terms, and add to them as you find out new ones that help you.  For instance, my rheumatologist told me I had spondyloarthropathy, but as I searched, I came to understand that this was a newer term for ankylosing spondylitis, so I figured that research that had been around for a while would be under the old term.

Records

It’s also a good idea to keep a record of the state of your condition.  Starting with today, devise a system, ideally numerical, to give each day a rating.  That way you can rate your highs and lows.  You may get a picture over the period of a year or two.  And if you do find something, you can see if it really does impact you or if it’s just a placebo effect.  In your rating system, include a place to record items of interest.  For example, was there something that might have triggered this flare in symptoms?  Was there warning that it was coming?  Once you’ve established your rating system, go back over the past few years, and note down various events / symptoms relating to your condition. If it seems possible that diet is implicated, jot down what you eat.  If you are taking medications, note them down and the dosages and side effects.  The more detailed your records, the better your chances of tracking your progress accurately.  This will be helpful if you start experimenting on yourself.

Goodluck, happy researching, and please leave a comment here to let me know how you go, especially if you turn up something useful.

How to ditch your reading glasses

I’ve been looking into presbyopia recently.  That’s the condition which requires most people over 40 or so to start needing reading glasses.  According to popular wisdom, as you age, the flexibility within your eye deteriorates, and it’s inevitable that as a result, focusing on items very close to you becomes difficult and then impossible.  I’m a big subscriber to the idea of use it or lose it, and I’ve been wondering whether eye exercises might maintain that flexibility for longer.

My brother, who is only eighteen months older than me, now uses reading glasses.  And I’ve noticed that when I indulge in my habit of writing my journal while lying on my stomach, my page only inches from my nose, I now see in double.  So… I got researching.

It turns out that there are eye exercises you can do to reduce presbyopia, but mostly they come in a reasonably expensive package and are purchased via those web pages that make me feel very suspicious because they are full of testimonials about how amazingly your life will change when you purchase their product.  And then there are reviews that say it’s crap and doesn’t work, and other reviews that say sure, do eye exercises but you don’t need any expensive package to do them.  I couldn’t find a free package so I started out with an exercise I learnt as a kid:

Hold your pointer finger up in front of your face, and slowly bring it in towards your nose, doing your best to keep the focus clear.  Go in and out. slowly, maybe ten times.

I’ve been doing it for a few months but if there is improvement I haven’t noticed much.

Then I finally found a FREE package of exercises! You can find instructions and eye chart here and here.  I printed the chart, laminated it and got to work.  I just do the exercises for about five minutes most days – not very long.  And at the start I found it kind of hard but after a couple of weeks I could do the exercises easily.  And now, interestingly, when I write my journal up close on my stomach, the words are no longer double.  There’s a slight, slight blur to them which I hope will disappear as I continue my eye exercises.

I can’t guarantee this will work for you, but if reading glasses annoy you and you want to get rid of them, apparently the exercises help most people even if they’ve been using glasses for years.  And if, like me, you never want to need them to begin with, well, maybe it’s worth a try.

Happy reading.. (without glasses!)

PS if you try this, let me know how you go.  I’m curious to know others’ experiences.