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Has anyone had experience with the CFS Discovery Clinic in Donvale, Melbourne, Aust.

Discussion in 'ME/CFS Doctors' started by allyann, Nov 3, 2011.

  1. allyann

    allyann Senior Member

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    Hi,

    I have just come across a CFS clinic in Melbourne. I know that they helped contribute to the ICC definition. I was wondering if anyone else had any experience with them.

    The know that they are expensive, so would like some recommendations prior to getting a referral.

    -allie
  2. Sammy

    Sammy

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    What about Dr John Chia..... Thread. Read last post on page 2
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    They work closely with Dr. De Meirleir. I see him in Europe and am very pleased with the treatment.

    Sushi
  4. Sammy

    Sammy

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    And I guess apples and oranges are the same too?
  5. new here

    new here

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    Yes, I have.
    They are very thorough, so expect to go through a lot of tests and to take a lot of pills.
    However, I am yet to be convinced. They focus mainly on the gut, at least at the start. After nearly a year of taking countless pills, completely changing my diet, etc... I've had little to no success. However I know some people have found some form relief through this.
    If nothing else, it's nice to have a clinic who takes CFS seriously.
    If you're willing to give it a shot, then go for it. Just expect to pay quite a bit (oh, and watch out of the administration... they're the worst I have dealt with so far.)
    end likes this.
  6. taniaaust1

    taniaaust1 Senior Member

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    I was going to try to go and see Dr Lewis but then didnt end up trying to arrange something when I read that he isnt currently taking on any new patients.

    "The clinic is currently unable to accept new patients. Please check this website or contact reception for updates on when we will resume new patient appointments". http://www.cfsdiscovery.com.au/
    So it looks like you will be out of luck there.

    I guess when they do start to take on new patients too.. there is going to be a rush for many to be getting in with him.

    if you do contact the reception to ask when they are planning to be taking on new patients, if you dont mind would you be able to pm and let me know when.

    (Im now probably going to consult with a doctor in Queenland who has ME patients).
  7. allyann

    allyann Senior Member

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    Thanks New here for your response. I'm thinking my issues are more POTS related and of sure how much these treatments would help

    Tania, They said they are not taking on new patients at the moment but they are trying to find another doctor to work with them from early next year. They have put me on a waiting list for the new doctor. The thing made me wonder about them was that they wanted me to start testing now (and yes they are expensive) and that the nurse would then advise nutritional changes etc. All without seeing a doctor. Not sure if I agree with that approach
  8. Tony

    Tony Still working on it all..

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    Hi Allyann,

    I'm a patient of Dr Lewis. The approach they use initially frees up the doc as he is going to recommend these food intolerance tests anyway. We need to rule out lactose intolerance, fructose malabsorption, celiac's and look at any other possible food problems etc. You don't need a doc to do most of these things. Dietitians use some of the tests regularly.

    The idea that you should expect to take a lot of pills is a little wide of the mark. Your health case will be individually assessed so you'll be prescribed whatever the doc thinks you need. It's not a one size fits all approach.

    As regards to the admin I've found them very competent with only one or two very minor hiccups over many years. Dr Lewis has been quite brilliant for me and others I've spoken to. You can also do a search on this forum as others have or are seeing him.
  9. taniaaust1

    taniaaust1 Senior Member

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    I really like that approach.

    With doctors one usually goes and then has to waste so much time doing testing etc and then go back again for advice. It seems to be saving a huge step in things.

    Thank you for getting back to me about it all and explaining how his clinic works
  10. taniaaust1

    taniaaust1 Senior Member

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    Tony is Dr Lewis good with POTS too?
  11. allyann

    allyann Senior Member

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    Thanks Tony for the response. I guess I would just feel more comfortable shelling out for the tests if I knew I was going to eventually be seen by one of there doctors.
  12. Sammy

    Sammy

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    "If nothing else, it's nice to have a clinic who takes CFS seriously." Thats very true.

    Hate to disagree with Tony(luv ya buddy)on this but I think new here is Right, the Admin has issues. And has caused me issues :headache: Also NOT everyone will post, what they will PM ;)
  13. Tony

    Tony Still working on it all..

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    Hi Tania,

    I'm not exactly sure what Dr Lewis does with POTS but of course many of the patients have this problem. My very large and unknowing guess is that the usual things would apply that we see doctors variously use like salt, florinef, other drugs? Aquaforce, support stockings and other management tips etc.

    Allyann, depending on what tests you're doing the doc isn't necessarily going to be much more of a help. eg, if you have fructose malabsorption or lactose intolerance it's a dietitian who will guide you. The food allergy test is self explanatory, don't eat what you react to or eat very little of it. Is that all the initial testing involves?

    And hello brother Sammy...:) I guess different people have had different experiences with the admin crew. For me it's been quite straightforward over the years. I appreciate sometimes things can go wrong for people. I can only offer my own experience which of course doesn't invalidate yours or new here's experiences. Cheers to ya...:)
    taniaaust1 likes this.
  14. new here

    new here

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    Also just a note...

    At the moment, I find the clinic to be rather impersonal. This may be because I have changed doctors (in that clinic alone) three times in the past year (I began seeing one, she left. I began seeing another, he left. Now I'm seeing Lewis) so I am yet to settle into one person. I've found that I'm in more contact with the nurse (who is quite nice) more than anyone else.

    Personally, I like having contact with a particular doctor. I actually have two CFS/ME doctors for this reason - one doctor is consistant and personal (although isn't into testing and such) and one is very keen on finding the route of the problem but isn't so pesonal/consistant. It means I get the best of both worlds.

    I just thought I'd mention it because I know from experience that chronically ill people often like a certain "type" of doctor.
  15. Francelle

    Francelle Senior Member

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    At the end of last year I started the assessment process with the nurse. All good!

    A few minor hassles with the office staff initially but seems to be fine now. You can tell they are very protective of Dr Lewis.

    Started seeing the male doctor whom Dr Lewis was training up but then he left. So have seen Dr Lewis since then even though they said he was not taking new patients. I guess they had to fit me in with someone. It did make me feel a bit unsettled.....and unloved ;)

    Regarding the POTS or OI that's one of the standard checks they do for everyone. It is a simple office check called a 'standing test'. So simple yet so effective. The outcome for me of that test was that I failed and have started on a beta blocker, Inderal/Propranolol.........and what an amazing effect they have had. I have scarcely had any episodes of palpitations or awareness of a rapid heartbeat, orthostatic dizziness and feeling like going to pass out, PEM, drained of energy etc since starting the beta blocker.

    They give you a copy of all the tests you have done quite willingly without having to extract the results from them.
    taniaaust1 likes this.
  16. allyann

    allyann Senior Member

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    Thanks Francelle,

    I ended up cancelling the tests and will look at them early next year after my baby is born. Good to here that the do take into account POTS.

    More and more doctors seem to be aware of POTS these days which is really good. Interestingly my exercise physiologist has stopped treating me with GET until my POTS is under control.
    Allyson and taniaaust1 like this.
  17. Googsta

    Googsta Doing Well

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    Hi everyone,

    I am seeing a new GP that actually knew about the Neurotoxic Metabolite, Food detection test etc I wasn't aware of any of them nor these forums! Things have come so far in the past ten years. My GP can order these tests so I am wondering too if it is worth the cost & the trip down to Melbourne.
    My husband & I are both on the DSP so money is tight, we also live near the NSW border so it's a long trip that I'm not currently up to. Does anyone seeing Dr Lewis think it is worth trying? Any advice would be welcome!
  18. Tony

    Tony Still working on it all..

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    Hi Googsta,

    http://www.cfsdiscovery.com.au/index.html will give you some basic info. It looks like at this time they are not taking extra patients.

    Your GP can also arrange for lactose intolerance and fructose malabsorption testing. Worth doing but they cost $80 each in Melbourne. They may be done somewhere closer to you? There are dietary ways of roughly testing for these things too.

    Dr Lewis doesn't bulk bill and as a new patient it's expensive compared to normal 10-20 minute consults with standard GP's. You can find out the costs by contacting the office at the above website.

    Cheers...:)
  19. Googsta

    Googsta Doing Well

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    Thanks Tony, my GP say's he can do this testing here. I think I have managed to stumble upon a good doctor finally!
    brenda likes this.
  20. end

    end Senior Member

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    allyann like New Here and Sammi - my experience was not great either. After a large out-lay & many many pills Diet alterations follow up appointments it has now been well over a year of treatment with little to no improvement.

    I share the frustration some may feel here after a negative response along with the large out-lay of funds.

    Good luck

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