May 5, 2013

An Update

Posted in ME/CFS, Progress tagged , , , , , , , , , , , , , , , , , , at 5:34 pm by Reva

I’ve been a little distracted these last few weeks by some issues at work. Not good, but if anything it’s made me realise that something is working. I say this as I’m sitting in my pyjamas at 4pm on a Sunday afternoon, with 4 weeks’ worth of clean washing piled up in my bedroom (I have been digging through it that pile for 3 weeks but it’s starting to look a little wrinkly), food spread from one end of the kitchen to the other (lucky it’s a small kitchen) and a pile of reading (lots of journal articles on IgG antibody reactions to food, and it’s links to leaky gut/IBS/ME-CFS).

If I ignore all of this and how it looks on the surface I have realised that for the last 2 weeks I have done all my own food preparation. I had planned to introduce this slowly after three months of doing virtually no food shopping/preparation etc but given my newly identified food intolerances I’ve thrown myself into shopping/cooking/washing up. I honestly don’t know how people with multiple food allergies do it. I am grateful that my reaction to the foods is mild and I’ve been told not to be concerned if I have trace amounts of the foods I react to, but I’m doing my best to avoid the trigger foods completely. It’s only temporary as the theory is that it can be treated (there’s an article on this in the journal pile). Anyway, I digress. Despite this sudden increase in activity I have not felt worse. Some of this improvement was starting before I made the dietary changes, I was starting to realise that as I was walking to my car after work I wasn’t focused on how many minutes it would be until I could lie down, and how much every inch of me ached. I was concerned that as I reintroduced shopping/cooking and washing up so suddenly I’d go backwards, but after a 2 week phase in period and a week of completely following the restrictions I haven’t crashed (touch wood).

My first step was to clean out my pantry and fridge. I put aside anything that was open but did not meet my new dietary needs and gave myself a week and a half to use it up. Anything that was still here the day the cleaner was expected would be binned. Anything not open has been put aside to donate. Everything else was put back in and a shopping list was written. So now everything in my pantry is safe for me to eat, except for a few staples that I’ve hidden up the back for guests (and the peanut butter which is Maisie’s)

I usually love eating out, but I was a bit worried about the first time I ate a meal out. I’m not one to make a fuss and usually I’m grateful I can have whatever I want. I figured eating out at breakfast would be a challenge. No wheat, No eggs. I was ready to just have a soy latte. But with some minor adjustments to the menu item I got this:

A vegie breakfast with mushrooms, tomato, hashbrown, spinach and avocado…minus the Turkish bread and hollandaise sauce, with a side of bacon. Yum!! It kept me full for hours too. With a soy latte of course.

I’ve also been doing my best to keep the food I cook at home interesting. Here are some of my creations:

                               
On the left I have my oat and rye porridge with stewed apples, almonds and honey which was my breakfast yesterday morning. And on the right, field mushrooms from the local farmers market stuffed with rice, zucchini, capsicum, onion ad broccoli, topped with pine nuts and goat’s cheese.

So really I’ve only been following the dietary changes for a week. I’m not sure that’s long enough to make any conclusive judgements. Actually, I’m sure it’s not long enough. But I’m certainly not feeling any worse, and these changes aren’t going to be harmful. And I’m having fun experimenting in the kitchen as a bonus!

April 21, 2013

Back to the Doctor

Posted in Journey, ME/CFS, Progress tagged , , , , , , , , , , , , , , , , , , , , at 7:36 pm by Reva

After 4 and a half years I made my way back to my old ME doctor this week. It was a big day – four hours round trip plus a 2 hour appointment and I expected to be in such a mess by the next day (especially given I was so bad last week) that I’d have to call in sick the next day. I was very pleasantly surprised. I don’t know if some of the treatments he has put me on or coincidence but I’m certainly not going to complain.

I explained to him that I think that in addition to not feeling like the treatments I was doing at the time we last spoke were making any significant difference, I had struggled with balancing my years of learning about evidence based practice, so not recommending treatment to clients that don’t have some solid scientific evidence backing it. I told him that I’ve come to accept that the reason that the evidence is so loose in our treatment options because treating ME/CFS is so new and the research is still being done.

We went over what’s been happening since last time we spoke. He told me about the citric acid cycle (also known as the Krebs Cycle) which is one of the body’s mechanisms for producing energy. It usually uses carbohydrates as its main source, however there is some evidence that in people with ME/CFS there is a blockage reducing the body’s ability to use carbohydrate and instead use protein. This reliance on protein might be causing deficits in amino acids which limits the ability of the citric acid to produce energy. He has suggested a protein powder that is 90% protein and contains a complete range of amino acids.

Source: Wikipedia

I went to a health food store after my appointment to buy the powder and they salesman was trying to tell me that I’d go through the product really quickly and tried to sell me the large tub. I assured him that the “small” 750g tub would be more than enough (hello, do I LOOK like someone who does serious muscle building?).

After the discussion about the protein powder he told me that he had growing evidence that dysbiosis was likely to occur in ME/CFS. I need to get my head around this in detail but the basis of it is there are two main types of bacteria in the gut. He is involved in research that is finding that people with ME/CFS have an imbalance of these bacteria, frequently to a point that they don’t find any e. coli in some patients. He went on to explain that this can be then causing changes in the pH of the body…this went on with further explanation that made perfect sense at the time that I can no longer remember. In order to manage this, first a faecal sample would be assessed for the ratio of bacteria and if it was found to be imbalanced it can be treated with a combination of antibiotics and probiotics.

My next stop was across the hall to meet with the practice nurse. First she did a blood test which was looking at my immune reaction to about 60 foods. This was a finger prick test. Apparently the theory is that these foods reactions are linked to the dysbiosis, and that by avoiding the limited foods there may be an improvement in symptoms. Once the dysbiosis is treated the foods can usually be reintroduced. I reacted to wheat, cow’s milk, egg, yeast, corn, legumes and peanuts. I was told I only had mild reactions so the nurse said I don’t need to be super strict, but she said the cow’s milk and egg are probably the ones to be most strict with.

Doctor wanted me to re-do the standing test I did back when I first visited him as the first I was so borderline for POTS. I didn’t get the results for that as he’d left the office for a bit when I finished. I actually didn’t get light headed through it, although my legs were extremely shaky and I felt like I was swaying.

Lastly I was sent off with a heap of papers, and blood test requests arrived in the mail the next day. I return to see him in three months and in that time I still have to have a heap of blood tests, urine tests, faecal tests (or as the doctor put it, “wee and poo tests”) and breath tests. Just to keep things fun the nearest place to do the breath tests is about an hour and a quarter away, I have to go on three separate occasions and have to arrive no later than 9am on each occasion. That should be fun.

In the meantime, I’ve started the taking the protein powder – I took it the first afternoon when I arrived home and I’m not sure if it’s behind by good recovery or if it’s coincidence but I guess we’ll see – and I’m phasing in the dietary changes. I think I’ll leave that challenge to another day.

November 7, 2012

More of My Journey and the Development of Empathy

Posted in Journey tagged , , , , , , , at 3:25 pm by Reva

After I had no luck with the Elimination Diet I kept researching.  I found a local Naturopath who reportedly specialised in managing ME/CFS.  This was a big deal for me.  In my training as a health professional I’d always seen the evidence behind what Naturopaths practiced to be weak, but modern medicine didn’t have an answer for me so I was willing to give it a chance. I did go in expecting that I’d be put on a wheat and dairy free diet as I thought that’s what all naturopaths did.

The naturopath did a pin prick blood test to check my blood type.  She then laid me on the couch and did a type of reiki.  She asked me what happened in 1992, stating that was the year this all began.  In 1992 I’d developed a rash all over along with general fatigue, and it was put down to a virus when blood tests were negative for Epstein Barr and Ross River viruses.  I was then put on the “Blood Group Diet” and given a series of supplements.

While the scientist in me was strongly against the blood group diet, the patient within was willing to give it a chance.  I figured that maybe she was onto something with the 1992 thing, and while the evidence for the blood group diet was shady it would be harmless assuming I could have a balanced diet.  Ironically my blood group was supposed to not have wheat and dairy.

I persevered for several months, returning to have the supplement tablets adjusted and waiting for that point where I started to feel better.   But that point never came.  I eventually decided I was wasting money on supplements that didn’t seem to be doing anything, and if anything the diet was exhausting to follow.

While I still think as a scientist I think having a chronic illness has given me an insight into the desperation that patients I work with also feel with their own treatments.  When modern medicine doesn’t have the answer I can understand a little about why people clutch at straws.  I’ve recently noticed that I seem to be more open to some of the less mainstream strategies people might want to try.  I can understand when your health professionals don’t have the answer you’re willing to give anything a try, even if the evidence isn’t strong.  While I suspect some people might see this as naive I prefer to think that I’m open minded.

October 27, 2012

Elimination Diet

Posted in Journey tagged , , , , , , , , , , , at 5:00 pm by Reva

Many people I spoke to reported that they had food and chemical intolerances which triggered their ME/CFS symptoms.  Now this was something I could relate too!  I am a health professional with a particular interest in the science of nutrition.   I looked into the RPAH Elimination diet which is a strict diet that eliminates food chemicals from the diet and allows a person to identify what chemicals they react to and in what sort of quantities.

pears

Foods we eat naturally contain many food chemicals.  There is evidence that in some people certain food chemicals can cause various symptoms.  The basic idea of the diet is to eliminate all the foods that contain food chemicals that are suspected to be the cause of these various symptoms from the diet until you have 3 consecutive symptom free days, and then you introduce small groups of foods in set amounts that contain specific chemicals to test your reaction to different food chemicals.  Once you identify the food chemicals that cause or worsen your symptoms you can then work out what load you can tolerate then learn how to limit them in your everyday day with the hope of minimising symptoms all together.

After following the strict diet for 2 weeks I had not noticed any improvement in my symptoms so the next stage was to remove wheat and dairy from my diet and wait for the symptom free days.  I waited to wake up with some improvement (or secretly to jump out of bed a go for a run) but after four weeks I felt no better.  Normally this is the point where you’d stop the diet and admit that food is not the problem, but on discussion with my colleagues we thought that maybe there had been gradual improvement which I may not have noticed.  I decided to try the “food challenges” with the theory being by reintroducing a large load of the chemicals I might suddenly worsen I could focus on that food chemical.  Each chemical is tested for 3-7 days, and there has to be a 3 day “wash out” between each chemical.  All I achieved from the whole process was a massive head cold (and ironically, I don’t get sick).

I discourage anyone from trying this process without the support of a health professional – ideally a dietitian specialising in food intolerances who are found in allergy units in major hospitals.  I managed to get myself sick, I’m sure relating to some sort of nutrient imbalance from such a restricted diet. I stopped the diet after about 3 months without any more answers.

Edit: This is one of the only sources of information I could find on ME/CFS and the RPAH elimination diet when I was looking into it.  Most of the research is around other symptoms including migraines.