Friday, April 29, 2011

More notes on healing

I've now been on my leaky gut healing diet for 3 weeks (no fructose, no gluten, no processed carbs, no grains, no sugar/sweetener of any kind, no legumes, no nightshades, no nuts, no dairy, no fruit, no spices) and I was on a less limited but still strict diet for about a month before that. I find it easy to stick to - my cravings have all disappeared, and I don't feel particularly hungry. I eat 3 meals and a couple of snacks a day. It's easy to manage as long as I eat at home. In fact, it makes my life much simpler and easier. I eat a lot of protein (chicken, beef) which makes it satisfying, along with plenty of fresh vegetables cooked with olive oil. My snack food is a cooked mixture of quinoa with sunflower, pumpkin, sesame and chia seeds. I drink decaf tea with rice milk, and plenty of water.

I've been gradually feeling better, but the big difference kicked in about 5 days ago - and it's a huge difference. My brain fog is almost entirely gone - not totally, but close to it. I feel like I have my brain back - I can think clearly again, and that's wonderful! My dizziness and orthostatic intolerance have gone, the lethargy has gone. The 'general malaise' - just feeling sick so much of the time - has gone. My energy is up about 15% - 20% - I hope this will improve, but I'm not yet taking any kind of supplements at all, so I'm happy with what I have so far.

My noise sensitivity has improved, though not entirely disappeared. I’m still sensitive to sun. My stomach issues are much improved - no more bloating and gas, regular BM. Still have slight indigestion at times. Mouth ulcers have gone. Generally better able to deal with stress (still some work to be done, but it's improved). My mood has noticeably improved since I stopped eating fructose. I lost 8kg (17 lbs) between Nov-Feb, and have lost a further 5kg (11 lbs) since Feb – the weight loss was needed and is welcome. I feel much better for it.

I still feel very stiff and achy when I get up in the morning – no, it’s not age! My 86-year old mother doesn’t feel this. I still get some brain fog when tired, when talking to people or in a noisy environment. I still have some noise sensitivity, and can still get quickly unnerved in certain situations with only a little more stress than usual. I’m still resting in the afternoons, and still limiting my exercise. I still have some concentration problems, especially when reading; I still have an issue with temperature control – either feeling too hot or too cold very quickly.

I have tested positive for fructose malabsorption. My serological test for celiac disease was negative, but since doing the test my sister was diagnosed positive using the genetic test, so I am now having that done. It is possible to have both ME and celiac disease.

I tested negative on lactose malabsorption and IgG food antibodies – however I have heard that many people with ME (“CFS”) test positive on these. I’ve been diagnosed with ME/CFS according to the Canadian Consensus Criteria, and have been sick for four and a half years. It is generally acknowledged that there are different types of ME, so that what works for one person may not make any difference to another. On the other hand, it would make sense for anyone with symptoms similar to those of ME to get tested for celiac disease, fructose and lactose malabsorption, and IgG food antibodies. In most places your GP (primary care physician) should be able to order these tests.

 Had lunch out with family members today - first time to enjoy eating in a restaurant for several years. 

Sunday, April 24, 2011

Chase Community Giving

Chase (the bank people) have set up an interesting system for deciding who gets some of their money. Instead of figuring out for themselves who is most deserving, they leave it up to the public to vote. So an institution doing serious research that could, in the end, save hundreds of thousands of lives (not to mention saving the US national economy billions of dollars on medical bills and disability payments) is left using up precious time to scramble for votes among patients, many of whom are bed-bound without the energy to use a computer. I guess I'll pass on social commentary and the questions surrounding corporate social responsibility and how it is managed. Let me just say, if you're reading this, please join Facebook and then 'like' Chase Community Giving, and then vote for the Whittemore Peterson Institute - they are working hard to find a cause and a cure for myalgic encephalomyelitis (aka "CFS") and I am enormously grateful to them. And I've copied the next bit from someone who writes far better than I do, Laurel, who writes the Dreams at Stake blog:

"In my opinion, the WPI has done more for ME/CFS research and awareness in the last few years than any other organization or government institute has done in 25 years. I am hopeful that, with enough funds, they will someday soon be able to find definitive biophysical markers, viable treatments (currently none exist) and possibly even a cure in my lifetime.

It is important to note that the WPI is also seeking answers for autism, Lyme disease, atypical MS and other neuro-immune diseases.

To vote for them, all you need to do is the following:
(Note: Facebook account required)

1. Go to:
2. Click "like" on top of the page
3. Go to:
4. Type "Whittemore Peterson Institute" in the search box
5. Click on the WPI and then click VOTE!

And you are done! It takes less than one minute, and could make a huge difference for all those suffering from this disease."

Wednesday, April 20, 2011

Vic Market

I'm off to the Queen Victoria Market tomorrow morning. A trip to the market used to be a priority on any Melbourne visit. When I arrived back early last November I couldn't imagine ever having the strength to get to the market again. It involves a short walk (10 - 15 minutes) to the local train station, a shorter walk (5 mins) from Flinders Street station to the tram, and then a quick hop from the tram into the market - and then the hubub and size of the market itself. I used to wander around for hours, the Sunday morning extended version with entertainment being a special treat. But tomorrow will be a well-planned affair. Arrive at 10:30 am, a brief visit to the food hall (a mecca for foodies!) and then out to the 'shed' to look for a pair of sheepskin boots to keep my tootsies warm over winter. Leave by noon. Back home by 1 pm, lunch (cooked in advance), and ready to lie down before I turn into a pumpkin at 2 pm. No plans whatsoever for Friday - recovery time.

My disgust at how people with M.E. continue to be treated by those in authority in the U.K. is so deep that I am left without words. Fortunately others are not so bereft. One of my favourite bloggers is Nasim Marie Jaffry and you can read what she has to say about the editor of The Lancet here.

And for those of you who have a few pennies to spare (even one pound or one dollar a month will be put to good use) I urge you to join the Count Me in Campaign to raise funds for research into neuro-immune disease at the Whittemore Peterson Institute. Thank you.

Sunday, April 03, 2011

Random Thoughts on Healing
"Nothing herein should be construed as medical advice"

There is almost nothing more certain of bringing about a relapse than writing about feeling better. Four weeks of eating foods I normally avoid, in order to get tested for various food intolerances, left me with a noticeable worsening of symptoms: fuzzy brain, lethargy, stiff and achy limbs, and stomach problems. Now that the tests are over and I'm reverting to a wheat-free, dairy-free diet I'm picking up speed again. And I'm now more convinced than ever of the role of diet in treating this disease in some patients.

I'll admit I'm a little slow to catch on. Partly that's because I've tried avoiding different foods in the past with limited effectiveness; partly because there's so much information out there on the internet that I find it overwhelming, confusing, and frequently contradictory. Aside from the merest handful of doctors taking an interest in this disease, patients are left to scrabble around on their own in search of answers. This makes for a very large group of vulnerable people (estimated 17 million worldwide). Many are simply far too sick to use the internet or libraries; many are too sick to make it out of bed and into a clinic; many are just clinging on, burdened with other responsibilities such as taking care of equally sick children; most don't have the scientific background that would enable them to understand the published research papers that shed light on the illness.

A couple of recent readings are driving me forward at present. One is a recent blog entry written by a doctor who has ME, as do her daughter and husband. Dr Jamie Deckoff-Jones is read and appreciated by thousands of patients for her openness and willingness to discuss the disease and treatment that she is trying out on herself. It is worth reading as much of her blog as you are able:

I look in on the patient forum "Phoenix Rising" from time to time (with thanks to a good friend who encourages my participation). I avoid most of the patient forums, but this thread was brought to my attention and I found it interesting enough to copy and re-read:

The tests that I've had to date show that I have a "leaky gut" problem (aka "gut mucosal barrier dysfunction") and a problem with fructose malabsorption. Unfortunately I have another 3 months to wait for further test results and my next appointment with the doctor. In the meantime I am adjusting my diet in line with the test results. The more I read the more convinced I am that diet underlies many health concerns. I would encourage everyone with any health problems at all (including mental health) to get tested for food intolerances and allergies, lactose and fructose malabsorption using the hydrogen breath test, to try and figure out if you have a sensitivity to salicylates, and to test for coeliac (celiac) disease – one of the most commonly undiagnosed health problems (it can be asymptomatic but still cause internal damage). Work with a recognized, qualified medical practitioner whenever possible. And read widely!