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Australian Specialists including Neurologists

Discussion in 'ME/CFS Doctors' started by Googsta, Apr 10, 2012.

  1. taniaaust1

    taniaaust1 Senior Member

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    This has changed. A new patient rang up last time I was seeing him and the wait to get in there is now 6mths.

    Dr John Graham (CFS specialist) had a stroke so all the patients he was seeing in his semi retired state are now seeking specialists including Mitchell (so that wait for him could end up becoming even longer).
  2. taniaaust1

    taniaaust1 Senior Member

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    No.. I still havent got to trial a drip for the POTS. I had another collapse in a shop several days ago due to the POTS (Im still feeling disturbed over that happening to me yet again. Everytime that happens to me in public.. I end up having to deal with after fears of doing anything anywhere alone.. now Im back again dealing with fears over just leaving my support worker in the car while I quickly duck into a shop in case it happens to me again).

    So it looks like the BP drug (clonidine) which I was trialing for it hasnt helped it at all. Ive got to now go back to Dr Del Fante and try to work out what to try next but he's already said he doesnt know what to do about me and the POTS as Im already on Florinef too (I have thou already asked him about trialing saline and he said he couldnt see how that could be done).

    Thanks.. I havent heard of Dr Baratosy before. I'll try to look him up. Is he POTS aware?
  3. taniaaust1

    taniaaust1 Senior Member

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    I just looked up Dr Baratosy.. he does sound interesting http://www.alternatedoc.com.au/

    Sounds like he may be helpful to me thou he does a lot of similar stuff to Dr Mitchell does. (Dr Mitchell is currently trying to help my Metabolic Syndrome and hormonal issues. I do have GIT issue thou (which Im wondering is being caused by mito dysfunction) and an extremely high copper hair test which I think too should be followed up.

    Ive been on supplements now trying to get the copper down for over a year and havent been retested as I dont now have a doctor to get retesting on my hair analyses test (its a lot cheaper if done throu a doctors recommendation). Previous doctor I saw which was supporting hair analyses and put me onto supplements in line with my test results is no longer practising. I thou havent done any proper chelation for it.

    Thanks again. I will be following that doctor up. Do u know what kind of wait he has? Do u know if he's supportive of hair analyses? Do u know if he's good with ME patients or does he push exercise? (I cant exercise).

    edit .. I just realised I missed half the info on his page.. it says the wait is 6-8 week waiting list
  4. ThatBloke

    ThatBloke

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    Brisbane:
    Dr Gary Deed at the Mediwell Clinic in Coorparoo in Brisbane is the man for CFS in that part of the world. Treats a lot of CFS patients, is very knowledgeable, understanding and helpful in all matters ME/CFS.

    He is a GP and a fellow of the Australian College of Nutritional and Environmental Medicine and is hooked into the latest research at Griffith and Bond universities on MECFS.
    heapsreal likes this.
  5. Sherrie

    Sherrie

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    Hey Tania, I am sure we talked about him a while ago? hes the Dr I see occasionally (I don't really see Drs much), when I wanted to trial LDN he prescribed it for me no problem. He also tested me for heavy metals last year, he gave me DMSA for a challenge test to take the night before my appointment and then he tested my urine for heavy metals. He didn't charge me for this test, he's really good like that.

    He then prescribed me DMSA to chelate lead that showed up, the DMSA cost me around $240 from a compounding chemist, it's not cheap! It's funny I just did my own challenge test this morning after having a break from DMSA for a few months now and my results were clear.

    He treated me for adrenal fatigue a few years ago which didn't help and I couldn't tolerate the cortisol he gave me. He has a pretty open mind. Last time I saw him (a year ago) he was an 8 week wait, you need to book a at least a double appointment for first visit and he isn't expensive. Last time I saw him it cost me a $15 gap which is cheaper then any GP here in the hills, I do not have a health card or anything because my partner works. He doesn't rush you so sometimes he runs late a bit when you're waiting to go in.

    I have seen people there sitting in another room on drips.
    taniaaust1 likes this.
  6. Sherrie

    Sherrie

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    Oh yes hes fine with hair analysis, hes looked at mine which was ok but still wanted to do a challenge test to make sure. And no he doesn't push exercise, hes not a CFS Dr though he has some patients that have it and also MS patients etc I can't promise you he will help but he's very open minded and willing to try things, he's not arrogant or judgmental. I know when he prescribed me LDN he was already trying it with other patients.
    taniaaust1 likes this.
  7. Wifi123

    Wifi123 Senior Member

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    It's sad that we find so many CFS/ME sufferers going through a barrage of catscans, MRIs, and PET scans. The excessive ionised radiation is making them worse. It has me gobsmacked how frivolous Australian doctors are with x-rays.

    You need to view; "Runaway use of radiation harming patients" by Eric J Topol MD on 17th December 2012.

    In Australia we have a serious problem with overcooking radiation by using nuclear scans, CT scans, and PET scanning, and we are not warned by our doctors and specialists; we are NOT given any data on the dangers. And it's no wonder many CFS/ME sufferers are becoming worse by the affects of radiation, ionised and non-ionised.
    merylg likes this.
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    As mentioned in another thread, most docs work within the realms of the AMA if they go above or below they risk getting in trouble by the establishment. I have found dr deed, when asked is very helpful and knowledgeable, he wont offer treatments outside the box unless you ask about it and one understands these treatments etc he is obliging to different tests or treatments but will say no if he thinks its dangerous or of no use. I have found him very compassionate and has a very good knowledge of cfs/me and he always suprises me when i bring something up out of the box as he will know about it. Other GP's i have seen wouldnt have a clue and would just chase u away or u get a scipt for an antidepressant. The bottom line is, no doc has the monopoly of cfs/me but i have found him willing to try different things ouside the box(safety concerning) when i have asked him about it. Theres no black and white treatment for this illness yet and things can get frustrating when we are rolling backwards.
    taniaaust1 likes this.
  9. Allyson

    Allyson Senior Member

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    Yes I quite agree Tony , Chris O'Callaghan in Melbourne Australia has been exellent for OI// POt s EDS diagnosis and treatment. Also he is the only oe who measured a lying/standing PB correctly - lying down 2 minutely for 10 mins then standing for the same time. Doing this he has found a 29 mm drop in my BP on one occasion out of about 5. He is also at a major teaching hospital and doing active research so to be highly commended in my opinion.
  10. taniaaust1

    taniaaust1 Senior Member

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    Ive seen over 40 different doctors/specialists and havent found that to be the case at all. No doctor has needlessly exposed me to radiation.

    I did thou have a series of tests including MRI and SPECT scan as due to my own wants as I enrolled one time into a ME/CFS study.. to help our cause.. and that was the only way I could get those tests done.

    Other then that.. I only have had one other MRI to rule out MS (which due to my symptoms I needed at the time)
  11. taniaaust1

    taniaaust1 Senior Member

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    i didnt see your post till now.

    I ended up emailing him at the end of last year (13th Dec).. and within 12 hrs had an email back from him (amazingly fast response). I'll share his email to my queries of my case another else is wondering about this dr. and what he does.

    Anyway..he seems very nice and I will probably go and see him this year. Only issue with the IV saline with him is that only once a week thing (but at least if I could get there I could trial it a few times even if only once a week!!!).. and it being so early in the morning (usually asleep then so I may be loosing sleep to get up and get a drip.. and i dont even think I can get a ride from another that early) and the fact he's right on the other side of the city.

    Im currently are having some success with Dr Mitchells treatment.. its even helping my POTS and has helped my heat intollerence a lot. Im about to try to work out what my new limits are since starting the things Dr Mitchell has put me on (I think its having the right supplments for my polymorphism which is helping.. thou I guess it could also be the adrenal adaptagen)
  12. Persimmon

    Persimmon Senior Member

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    Michael Oldmeadow in Melbourne

    Another thread identifies a new CFS clinic recently set up at Caulfield Hospital in Melbourne. It has been set up by Dr Mike Oldmeadow, who appears to be the only doctor there. He is a consultant physician who has worked with ME/CFS for more than 15 years.

    Various patients have posted online about their experiences with Dr Oldmeadow. The responses are mixed: some condemn him as only being interested in GET and CBT; others swear by him and say that while he encourages GET type exercise he isn't blinkered. I haven't seen him, but from what I've heard he is genuinely caring and doesn't think we have a psychiatric disorder (and he's not out to take financial advantage of the vulnerable, as some are)... But he believes that we can be substantially cured via wessely-style protocols.

    Here are some extracts from "Chronic fatigue syndrome can be beaten", an article published in The Australian newspaper of 15 August, 2009. The quote attributed to Dr Oldmeadow is informative:

    "Melbourne's Austin Hospital is home to Australia's only adolescent chronic fatigue rehabilitation program, according to paediatrician and program founder Lionel Lubitz. He says it's similar to the British programs and has treated the illness with an 88 per cent success rate since 1998, a claim backed by data published in the Journal of Paediatrics and Child Help, as well as in a follow-up study yet to be released."

    It goes on:
    "That's a drop in the CFS ocean, according to program co-ordinator and exercise physiologist Nathan Butler. Butler spent six years working in Britain's Churchill, Kings College and Royal Free hospitals in similar programs. He says the Austin's treatment plan dates back to 1988. Like the British therapies, its core is a program tailored to fight the physical and mental deconditioning that causes and worsens CFS... meaning they recover completely or are able re-enter a normal life without exacerbating symptoms.

    According to Oldmeadow, Australia's lack of a plan to treat the illness on a broad scale denies sufferers treatment that would improve the quality of their lives significantly. He claims the need for an adult version of the Austin's adolescent unit is acute: ``It's been shown time and time again that using an inpatient facility to treat CFS, like they do in the UK, can help.'' Lubitz also argues that more adolescent units are needed."

    Those quotes are a real worry!

    FWIW, Kings College is Wessely's home base
    taniaaust1 and Adster like this.
  13. Adster

    Adster Senior Member

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    Nathan Butler runs a GET type program from a private clinic in Blackburn. I did a different four week privately run program a few years back. Big waste of thousands of dollars that was. But, when you are desperate to get your life back you'll sometimes take bad advice....
  14. Sherrie

    Sherrie

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    Sorry I was warned about the risks first before agreeing to the spect scan and I don't allow wireless in the house so it is something I am aware of but I figured what hope is there for getting better anyway. At the end of the day, if no-one did these tests they would not know we had reduced blood flow etc
    Valentijn and taniaaust1 like this.
  15. Sherrie

    Sherrie

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    Hey Tania, what treatment does he have you on that's helping?
  16. taniaaust1

    taniaaust1 Senior Member

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    Dr Mitchell is treating my MTHFR polymorphism more correctly (thou still maybe not quite right as what he's doing, the MTHFR expert at thd MTHFR site says its not the best way to be treating it (a lot slower)..... maybe that is why Dr Mitchell says it will take up to 2 years for my body to become better with the MTHFR. My previous specialist had me on competely the wrong forms of supplements for it which didnt help at all. Treating this more correctly is helping a great deal. eg far more stamina, POTS seems better some and far far less heat intollerance going on. (Im currently still trying to work out if its helping my brain and possibly insomina too.. Im able to wake up earlier and get up most mornings 2-3 hr earlier.. not sure if that's coincidental or not.. my ME goes throu big symptom changes at times anyway as far as sleep goes).

    I dont knowat all but also the adrenal adaptagen supplement he's put me on may be helping too? (my adrenals were terrible)... (I cant currently separate how much that is helping from the improvements the MTHFR supplements are certainly doing).

    He's changed other things too but I arent currently doing the other things as Im wanting to know exactly what is doing what.. so will impliment those changes more later. (I doubt the other things are going to help as they havent in the past and they arent much different).

    Anyway.. he's solved another big key to what I need to be taking.
    merylg and GcMAF Australia like this.
  17. GcMAF Australia

    GcMAF Australia Senior Member

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    Good on ya tan
  18. Sherrie

    Sherrie

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    Have you posted anywhere the supplements he has put you on?

    I hope things keep improving for you!
  19. ramakentesh

    ramakentesh Senior Member

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    if anyone would like more information re doctors from Melbourne please pm me.
  20. taniaaust1

    taniaaust1 Senior Member

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    Im wondering if there is any of Dr David Michells patients here cause Im confused about something. Last time I had a consult with him.. he told that there was some change happening and that I had to get my blood tests done fast as it was going to change so that only 3 blood tests could be done at a time for free and any others over the 3 had to then be paid for.

    Im confused as he made it sound like this was happening real real soon and from what he said I thought it was some new gov policy or something but I I havent heard anything else on this anywhere else. Has that happened??? If not.. is "he" under some rule which only allows him to do a few blood tests at a time without a patient having to pay????

    Anyway.. Im confused as no one else has mentioned this.

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