Sunday, January 17, 2016

The State of ME/CFS

I guess this sums up the official US viewpoint which is a step towards educating the regular doctor. Diagnosis is becoming standardised away from the psychological model of days gone by but even this meagre attempt probably has not impacted any of my General Practitioners (GP) at Golden Beach General Practice.  It was only last year that they recognised fibromyalgia as non-psychological.

http://iom.nationalacademies.org/Reports/2015/ME-CFS.aspx

The Canadian Concensus Guidelines are still the most thorough

and in the UK, the PACE trial did so much damage to patient treatment that an investigation is underway from outside parties.

Monday, January 11, 2016

First day this year without watery runs, yippee!

I didn't go to the doctor because I don't like to go.  Not sure what this was though so for my records I am just recording what it was like.  It is not usual for me to get watery diarrhea in the absence of complete bowel attack that finally ends with this.  I had a lot of random mostly stomach pains but other places too in the gut and I lost my appetite or else avoided food on purpose to minimise the problem but I usually ate something by tea time and as usual finished off with something sweet.  It all seemed to start with plum pudding in which I find they include prune puree these days.  That was well before Christmas.  At that time I eventually came to the conclusion it was the sorbitol in the prunes/plums and the humectant (420).  I already knew about  sugar alcohols and my horrid reaction to them gutwise and have found that I tolerate erythritol the best at least in small amounts - eg chocolate drink mix.  Maltitol, mannitol, sorbitol are not for me which excludes most sugar-free foods/bars.  I get pain as well as diarrhea and I'd rather have glycoprep or golytely or whatever it is called if I need emptying (for a colonoscopy).

I cut out the plum pudding and fared better with light fruit cake but not dark which has more fruit.  I made sure there was no plum puree.  I wondered about fructose intolerance but it is the first year I have not been able to eat mixed fruit safely since I have overindulged on fruit mince pies leading up to Christmas for many years but I figured they had too much sugar for a diabetic with all the pastry.  Not really sure why I thought fruit cake would be better except to say that I have not really had a blood sugar problem for a long time despite me eating icecream daily too.  But I went off the desire for icecream despite it being liquid enough to help not aggravate my usual bowel problems.  I also found myself cutting cream out of my coffee which is another major source of calories for me.  I need more calories not less because my body goes into starvation mode making it impossible to lose weight. Anyway, it felt like I may have had a gut bug so cutting out dairy made sense.  I seemed to fare best on rice crackers but I did not check my blood sugar to see what they were doing to me because I had to eat something and even my totally plain beef patties were causing symptoms.  Even all the flavoring on the rice crackers (cheese) did not seem to be an upset.

I tried activated MMS to kill the bug and I did find it useful for after eating because it seemed to quell the bloating and gurgling that built up quickly.  I think the shooting pains were the thing that stood out as being "different" from other gut problems I have.  I did not get to more than 2 drops of activated MMS in a glass but I was worried about taking it and when the diarrhea didn't stop, I stopped taking it after a week.  But I have a feeling it may have helped shorten the lifespan of the bug.  I just don't know.  I wondered if I had food poisoning from the Christmas ham and soon stopped eating it so it went to waste (except for the dog who loved it and the bone).

All I can say is that this gastric bout stopped after I had started taking Silymarin and Tumeric capsules several times a day for a few days with the addition of the probiotic Saccharomyces Boulardii +MOS (expired) for the last 2 days.  Crumbed or battered fish was a meal I tolerated the best at night with a bit of lettuce when I had to start eating again.  And I was back on the mince beef patties for breakfast yesterday and today. I'd run out of eggs so I had no egg yolks as I usually do. Hmm, maybe the eggs were contaminated?  They hadn't expired though.

I did consider gastroparesis but it did not seem anything like the troubles I have with that except the perceived need to cut out cream during those times.  I mean food was going through fast from tea time to morning not slowly and I was not nauseous in the normal sense of the word - just "erky".

I still have not been able to put my back into place so that I am still getting daily migraines cracking and flashing and have doped myself up for those when I couldn't shift them.  It has been going on since before Christmas when I impulsively bought a PainMate to help treat it which has subsequently died on me a day after putting in a new battery.  I needed new sets of sticky pads for it but was putting up with its lack of stickiness due to "insufficient funds".  If I had the money I would not only have bought them but I would try a chiropractor or better still, an osteopath.

I am just shifting things around enough to ease my head by rolling on a tennis ball but basically I have been disabled by these problems so that I've done nothing more than small bits of housework and grocery shopping.  It is a real shame because I actually have more energy than I have had in a long time but using it usually means moving my arms and if you have spent quality time trying to stretch your back (I really should get a proper back stretcher), and received a lot of relief after the initial pain of the stretch, you don't really want to have it all come back just because your brought the wheelie bins in or hung out the washing but it is hard to stop me making the most of the energy I have to catch up on housework.  Milo does not help with my migraines because it is not just moving my arms but bending too and people wonder why I cannot teach her to jump through the doggy door when the flap is not hinged up.  It gives me a migraine trying to show her what to do that's why.  One day I even had my head out the flap.  She remains scared of the flap and totally clueless about the idea of pushing with her body.  And I also have the best liver treats you can get!

Then there is the flea problem, washing bedding and frequent doggy baths.  All migraine material.

Anyhoo, 11 days into the new year I am only nursing one majorly disabling problem instead of two so I've got to be happy with that!  It is time to sling a tennis ball over my shoulder and roll around on the wall.  Have a nice evening - I restored my ipad so I can watch Presto on it tonight.

This was on TV tonight about the state of Tick-borne Disease in Australia - http://www.abc.net.au/7.30/content/2015/s4386727.htm

I'd better get a wriggle on and make my submission to the Senate Inquiry.