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.

October 19, 2012

What is this ME/CFS You Speak Of?

Posted in ME/CFS tagged , , , , , , , at 5:44 pm by Reva

Myalgic Encephalomyelitis(ME)/Chronic Fatigue Syndrome(CFS) was first described by the World Health Organisation (WHO) in 1969 as a neurological condition.  It is a complex condition with a wide range of symptoms that affect various systems in the body including the neurological system, the gastrointestinal system, the immune system, the endocrine system and the cardiac system.

While fatigue is a key symptom in diagnosis it is by no means the only, or for many sufferers the worst.  In fact one of the most common symptoms, experienced by approximately 95% of sufferers, is Orthostatic Hypotension, an often sudden drop in blood pressure.  Other common symptoms include sensitivity to light and sound, difficulty regulating body temperature, pain to varying degrees and irritable bowel syndrome.

While there is much debate around what constitutes diagnosis, it is largely a process of elimination although there are now a number of diagnostic guidelines around.  My doctor, used the Canadian diagnostic criteria for diagnosis, and I believe these are used by many doctors in Australia.

There are many theories as to the cause and there is slowly more research being done to identify the cause, or more likely causes.  This research will hopefully one day lead to a successful treatment but currently there is no cure.  I plan to write about treatment that people find helpful as a part of this blog.