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.

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9 Comments »

  1. hayley said,

    A heap of tests is right, but I hope the results provide more clues about what else to try. If you need an alternative milk for your protein powder, water blended with almonds or hazelnuts is nice.

  2. Really interesting post Reva, it sounds like the journey to the doctors was worthwhile. Especially interesting for me is what you say about pH imbalance, I have symptoms that I’m sure are to do with pH imbalance but never got anywhere with my specialist about it. So anything more you could share about that would be really helpful. But know how overwhelming these appointments can be with info overload. Good luck with the protein powder, I look forward to hearing how you get on with that too. Take it easy, Jess.

  3. ABE said,

    Interesting – I have a protein shake – chocolate – mmm! – every morning for breakfast (but, unlike you, I buy the 5 lb. bag).

    How often are you supposed to use the protein? One meal a day? A bit at a time? Is it supposed to help it you replace more meals with the protein? Did the doctor give you anything to read to follow up on?

    I’ve always said my brain works better on protein and fat (ketones are used by the brain for energy); my problems start up again when I can any amount of carbs in the diet – but I always thought that was just me.

    Off to drink my shake!

    • Reva said,

      I only need to take a teaspoon of the powder twice a day. It’s not being used as a meal replacement or to replace protein from food, just to supplement. It would go against my grain to replace meals with protein powder in most instances.

      It’s important to have a well balanced diet to feed the brain (and the rest of the body). While it can adjust and use ketone bodies as a source of energy it needs at good glucose source as there is some brain function that can only be fuelled by glucose. The body and it’s use of food is more complex than what many lead us to believe, isn’t it?

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  5. JessieAnnej said,

    Hey there, I know this blog post is old but I am in Vic, Australia, and have CFS and have really struggled to find a practitioner that understands it. For example, in nearly two years not one professional has recommended I be tested for food intolerances, which I would have thought was a given. I wondered if you could tell me who your doctor is? Cheers!

    • Reva said,

      I went to CFS discovery. http://www.cfsdiscovery.com.au

      I haven’t been for about 18 months but I’m thinking about getting some genetic testing they suggested following finding that my cousin has been diagnosed with cfs.

      I didn’t find the food eliminations particularly helpful myself but I’m glad I tried them for myself. I suspect I have some FODMAP intolerances which I understand is not uncommon in ME but it doesn’t effect my fatigue levels and my IBS symptoms are not strong enough for me to worry about going through the restrictive process of trying to pinpoint them right now.

      I believe there are two doctors working at cfs discovery as well as a nurse who has been with them the whole time I’ve been going – off and on for about 10 years.

      I hope you find some help.


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