Thursday, March 4, 2010


I went back to see my Dr yesterday and I am pleased to say we are starting to make progress in terms of a plan. We haven’t been able to do much up until this point because during all the testing I had to actually get a proper diagnosis we discovered that I had a nasty malabsorption issue. My pancreas does not make the enzymes that it should and this has lead to various gut problems. Obviously there were symptoms but I had just been dismissing them because I have Coeliacs and I had just assumed it was that causing the problem. So … I am on a MEGA dose of anti biotics for a month (which I actually started 2 weeks ago) and these have made my CFS symptoms worse, uuurrrrrhhhgggg …
Once I finish the anti biotics I can start taking Creon which is just an enzyme supplement and that should help with the malabsorption thing.

In terms of CFS I have started on vitamin B injections and that’s it so far. The plan is to wait till my guy is sorted and then start trying treatments and see what I do and don’t have success with. I will most likely be trying things like Amino acids which aren’t overly invasive. I also now have a ‘Care Team’ which incorporates my Dr, an exercise physiologist and psychologist (who both specialize in CFS) and I also have a social worker to sort out any general care issues at home etc. So all I really need now is for Centrelink (social services) to come to the party and give me some sort of pension and I will be able to relax and hopefully make some kind of recovery …..

I am expecting to see the exercise physiologist in 2 weeks and start some kind of graded exercise. I have to admit I’m dead scared to try this because up to this date any movement that raises my heart rate even slightly lands me in bed for a few days …. If anyone has any personal experience, good or bad with graded exercise I’d love to hear it 

On a positive note, I actually managed to bake some damper yesterday!!!! Unfortunately the effort involved wiped me out so much that I was unable to eat any, hahaha but maybe I can try it today!!


  1. Lee -

    Glad to hear you have a plan now and some doctors to help. It means so much to have a doctor (or two) who understands CFS!

    Are you taking probiotics while on the antibiotics? Antibiotics can mess up the gut in their own way, killing off the good bacteria, so you should always take probiotics, too, especially for long-term abx. I've been on abx for 18 months now for Lyme (I got it last summer) and my stomach would be a mess without large doses of probiotics. You just have to be careful to take them at different times than the abx (3 hours or more apart) or else they cancel each other out!

    I haven't tried B shots, but I know they help some people.

    Be VERY cautious with exercise!! Exercise is like poison to people with CFS - as you've observed, raising your heart rate results in a severe post-exertional crash (due to your cells' inability to process oxygen). This is one of the key characteristics of CFS. GET is dangerous for many people with CFS. Proceed with great caution. You know what your limits are. You may be able to VERY gradually - over a long period of time - increase your stamina...if your treatments are helping to improve your overall symptoms. But to push to the point that you crash will only make you sicker. Please be careful.

    I have no idea what damper is, but I hope you get to enjoy it today!


  2. Thanks fr the advice Sue, it's much appreciated :) Damper is a kind of bread, it has few ingedients and was traditionally cooked on a camp fire. I made it with gluten free flour so it's a bit odd ... but still yummy !! hahaha
    Regarding the probiotics, I haven't started taken them yet but I will be. My Dr said we need to kill some bad stuff first and then reintroduce the good bacteria ... I am trusting his judgement on that one ;)

  3. Hi Lee, this sounds like a plan! The only thing I think I can add is that I'd be wary of starting GET before I had established a resting and pacing routine so I knew exactly what my base line was. This may be part of your therapy anyway, I don't know. But we all have an energy envelope that we can work comfortably within. You need to know where the edges of that lie. Taking the peaks and troughs out of activities, e.g by sitting down to chop veg, can really help extend your energy envelope.

    Keep us posted. I'll be very interested to see how you get on.

  4. Thanks Jo, it's good to get confirmation from other people that what I am thinking is correct etc :-)

  5. Hey beautiful!
    I also had a mega dose over a couple of months and started probiotics two weeks after antibiotics and have been on probiotics now for years - very helpful in sorting out the gut! Antibiotics for too long without probiotics makes everything worse.

    Vitamin B injections were my saviour for about 7 years before I started on prednisone. I started off weekly for about two years and then fortnightly into the thigh or butt. If you want a dr to see to get this done bulkbilled regularly I can recommend one close to Gary who is very supportive and knows Gary - he used to do my jabs. I found it took about 3 months for me to really notice just how magical the vit B injections were, but then it was great. If I went a couple of weeks without them I noticed it big time!
    Graded exercise sucks but is really helpful. I have fought it when I've been too tired and sick but ultimately not doing it makes it worse. I started off (and continued at this pace for a very long time) by walking for a minute a day. Hydrotherapy can also be great as it's very gentle and relaxing. If you go to Chandler Pool they have a warm, shallow hydrotherapy pool and you can just walk up and down the ramp to start with and then eventually walk a lap of the pool. I still have to do graded exercise after my huge flare in 2008 and am currently up to 2x 2minute sessions on an orbital walker on the lowest setting. Doesn't sound like much, but HUGE for me and if I don't do it the next day I feel worse! The first week is the hardest and everything hurts but stick with it because it really does make a difference!

    Fresh carrot, celery, apple, ginger and beetroot juice were a huge help to me and several other people I know with CFS. Seems to really help the digestion/malabsorption and the energy problems.
    As you're now seeing a few health practitioners, are you aware of the Advanced (enhanced?) Primary Care Plan from Medicare - Gary knows all about it - where you get to see these other specialists bulkbilled through Medicare. I saw an osteo and physio on mine last year.

    I was on pancreaese which sound like a similar enzyme to yours for a couple of years, before I couldn't stand the thought of taking pig pancreas any longer. It certainly helped though...

    Celebrate the damper! Celebrate every achievement!

    wishing you peaceful, restful slumber xox

  6. Yep Creon is the new version of pancrease (which they don't make anymore). I was doing the carrot juice thing but my juicer needs to be cleaned everytime you use it and it's a process that requires to much energy right now, but it's on my list of thngs to get back too as soon as I can.

    Regarding the Primary Care Plan thing with medicare, that is what I am just about to start on which is good.

    Re: the Vit B injections, Gary is only charging me for the cost of the vitamin itself, he bulk bills his time etc, so I assume the Dr you mentioned would do the same???

    Mmmm yeah, the graded exercise thing is the one I'm spooked about, but I will be taking your and everyone elses advice and start really slowly!!! The pool is a great idea but at this stage it's too hard for me to get there. I had been thinking it might be time for me to dig Robert up so he can take of me! hahahaha


  7. Hey again,
    that's great that he's bulkbilling - yep this would be the same, I just saw Gary monthly and this one weekly/fortnightly for jabs.
    The old clean the juicer chore, I know that pain! Boost do now do up juices you can buy in say 1 or 2 litres if you can get someone to go out and get you them. They're not as great as fresh, but better than nothing.
    Keep your humour - you need it! It's all that gets me through sometimes!
    Hang in there xox