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.

Advertisements

April 14, 2013

Where did the weekend go?

Posted in Food, ME/CFS tagged , , , , , , , , , , , , , , , at 8:52 pm by Reva

I’ve written half a dozen blog posts in my head this weekend but do you think I can remember any of it? To top it off I think my brain is mush and my house looks like it’s been ransacked. I was determined to have the house looking at least tidy by the time the weekend was over but there are still dirty dishes on the bench, you can’t see the top of the kitchen table and the doona that I took the cover off last weekend is still lying on the floor. The dog has stolen the good spot on the couch – in fact she’s walking circles at the moment rearranging herself. Okay, I know that she’s a small fluffy thing that I could move but she looks so cute (and by the good spot I mean I would lie down there amongst the cushions and quilt, and not write anything at all). I promise I’ll move her when I’m done.

As my brain is just mush I’m just going to see what comes out. Oh, I did do some fun stuff at the beginning of the weekend (I had a bonus weekend day on Friday). A friend invited me over with some other ladies for a “macaron masterclass”. It was so lovely to be able to learn something new and I enjoyed sitting around drinking coffee, eating good food and just generally chatting. I did try to make some myself when I got home (love my new stool – I sat down the whole time) and I think I can honestly say, without a doubt, they were a disaster. I accidentally added the sugar too early, and eventually too much sugar all together so that they were extremely sticky when they first came out of the oven, and then so so crunchy. Like a rock. I did want to try again but when I woke up this morning a faced the fact that I really didn’t have the capacity to do it. Then I spent four hours sitting on the couch. I did a lot of that this weekend.

I have a few blog posts mentally planned, some even started, but I require more brain capacity than I have right now so I think I’ll just give you some pictures of my macarons from our masterclass (not the disaster ones – they weren’t pretty) and attempt to do a better job of writing next week

.

April 7, 2013

A Favourite Present

Posted in Strategies at 3:34 pm by Reva

I recently celebrated my birthday, and my parents bought me something I’ve wanted for quite a while, something that I hope will help me do things and use less energy while I’m doing it.

Something so simple. It’s the perfect height for my kitchen bench, so now I can sit while I was the dishes – cheaper than a dishwasher. I can sit while I’m chopping vegetables. Yesterday I diced 3kg of tomatoes and 1kg of onions to make tomato relish, all while sitting down. I can sit while I’m baking, waiting for the mixer to do its job. I can also sit while I do the ironing. I do what I can to avoid ironing all together, but sometimes when clothes have sit rolled up in the bottom of the washing basket for weeks I have to iron. Or I can sit when I’m piecing together my quilts, which I also do at the ironing board. I never thought I’d be so excited to get a wooden stool.