Thursday, July 07, 2011

Doing Well

I’ve now had my third visit to the “CFS Discovery” clinic here in Melbourne – an odd name, but a fortunate discovery for me. Three months into my “detox” diet, initiated following a diagnosis of fructose intolerance by the clinic, I am doing well. In fact I’m doing far better than I ever expected, and I’m enormously grateful that this clinic exists. The doctors, nurses, and other clinic staff are terrific – professional, competent, thorough, and friendly. Following additional tests my diagnosis of “ME/CFS” has been confirmed using the Canadian Consensus Criteria. (A word here: the clinic uses the CCC and not the stricter Nightingale definition of ME; the clinic also uses the term “CFS”, however they treat the disease on a strictly biological/physical basis.) I will give further details of my diagnosis and test results in a later post. At the moment I’m still reading through the results and information given me by the clinic, and organizing all the medicines and supplements that have been prescribed.

Physically I’m now able to go out most days. I can attend meetings and classes (I’m taking a Spanish evening class), and can once again enjoy sitting in a restaurant or café (I can’t actually consume anything they offer, but my extreme noise sensitivity is gone) talking to friends. I can go for a walk or wander around the shops for one to two hours. I frequently skip my afternoon rest, and I sleep 7 – 8 hours a night. I must still stay within my limits – when I try to do too much (a yoga class, too much socializing) then I need more rest and the brain fog/general malaise returns. I am still sick, but the difference between now and a year ago is huge.  I have added a range of vitamins and supplements to my diet, but haven’t yet begun taking prescription medication (soon to begin). It is clear that in my case at least, the fructose intolerance (and possibly also celiac disease) is a key factor in my illness. I advise anyone and everyone with any kind of “mystery” ailment to get tested for food intolerances, fructose and lactose malabsorption, and to test for celiac disease. These problems remain unrecognized and under-diagnosed. 

Melbourne city center: after losing another 3kg since April, my once too-tight clothes are now looking decidedly baggy!


Anonymous said...

Hi, my names Tim and I’ve been reading and enjoying your blog. I work for ME/CFS Australia as a volunteer and am writing an article in our journal about blogging with CFS. I was interested to know if it would be okay to feature you blog in an article about people who share their stories online. The journal only circulates amongst people with CFS in Australia and isn’t publically available.
Keep up the good work,
Tim Waud

Caro'sCat said...

That is so good, Nicky. I totally concur with regard to the food intolerances. If only more so called CFS specialists would look into this side of things.

I know I have improved since giving up gluten, lactose and refined sugar (mostly!). Unfortunately where I live once one is given the pejorative label of "CFS" you are just left on the dust heap. The real diagnosis and treatment therefore is up to the individual to devise as best they can using the "suck it and see" model!

I think you might agree Nicky, that all we are doing is a kind of damage limitation exercise with the diet and pacing. There is no doubt that the cause of this horrible condition is still within us, XMRV/MLV ..... or whatever!

Well done on your perseverance in getting things sorted. Will you be sharing what vits etc were prescribed? xx

Nicky Reiss said...

Hi Caro,

Thank you for your comments! Yes - I completely agree that diet and pacing are "damage limitation" only. Although the diet has helped me enormously I know that it's not a cure, and also that for many people with ME diet makes little difference. What goes on in the UK is criminal, and I'm feeling so lucky to be here in Melbourne where I can get treatment. I hope that by spreading information the NHS will eventually be shamed into providing proper testing and treatment.

I've been prescribed a regime of antibiotics, probiotics, and vitamins/supplements based on my test results. I'll share more of this information soon. But all treatment is individual - I don't think there's any one formula that fits everyone for this disease. This is why proper testing is so important.

Caro'sCat said...

I totally agree about formulaic treatment for ME, Nicky. I think I told you I tested positive for Lyme Disease and was put on a/bs for a good while. I did find it helped (herxing wasn't nice though!)

As long as folk don't get themselves confused and realise that we are all different, even within the ME spectrum, then knowing what has helped others can be a good guide. xx

Keena said...

glad that you are improving