New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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Me/cfs doctors in Sydney, Australia

Discussion in 'ME/CFS Doctors' started by Hotch, Jun 9, 2016.

  1. Hotch

    Hotch Hotch

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    Sydney nosw Australia
    Hi All, wondering if anyone has had success with Dr Mark Donohoe in Mosman NSW Australia. Or if anyone has suggestions of other good Drs in Sydney. I would love to see Dr Richard Schloefel but as I am way over 25yo and he only sees under 25yos. I am desperate and don't care how expensive they are. Any opinions would be greatly appreciated!!

    Cheers, HOTCH
     
  2. CCC

    CCC Senior Member

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    Dr Donahoe is very good. Our story is many, many decades old, but he is a family hero for recognising and successfully treating multiple chemical sensitivity before it officially existed let alone have a fancy name.

    I would highly recommend him. I think he's now known as one of the best in the field, and no one in my family is surprised by that.

    I've been told that the doctors now at Pymble Grove are also very good.

    They're all very, very expensive. Usually $500 for the first visit, but the consultation can last up to an hour or even 2. They don't do five-minute medicine.

    To be honest, we've had the best success from the Centre for Digestive Diseases in Sydney (gut parasite), and from adding B12 and B2 (as FMN) (as per FP). We occasionally discuss making the trip to Donahoe, but it's so far away and the B12/B2 approach is working well.
     
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  3. ahmo

    ahmo Senior Member

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    I have a friend locally who loves Mark. He treats her long distance. She's especially got MCS.

    :thumbsup:
     
  4. taniaaust1

    taniaaust1 Senior Member

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    Im curious aobut how Dr Donhoe treats MCS? (its one of my major issues with this illness).
     
  5. Hotch

    Hotch Hotch

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    Thank you so much for your help! I booked an appointment with Dr Donohoe today. I see him 20th June - very soon, excited!.

    Yes, I agree about Pymble Grove. I know someone who has been seeing Dr Schloefel for 10 years and from what I can gather he is excellent. She has just been diagnosed with Lyme disease. Since I couldn't get in to see him I booked in again with the Dr there that I went to for 6 years until 2008. I have Me/CFS. My history suggests EBV infection as I had this as a teen and had 2 relapses. Then at 21 got a serious virus and just never recovered properly. Haven't been able to work now for 13 years. I asked this dr for testing for viruses and bacterias (which she never tested in that 6 years). She said she doesn't do that. She goes at Me/Cfs from endocrine side. Dr Schloefel goes at it from many different angles. So this is why I am looking for another dr who looks at many facets for improvement. Will let you know how I go with Dr Donohoe. Thanks again Hotch
     
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  6. CCC

    CCC Senior Member

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    It was back in the early 1980s, and I wasn't living with the patient, so all I can offer is what i remember from letters from home.

    I think he had some sort of high-dose vitamin C regime. It's probably a standard IV Vitamin C treatment now, but there was nothing standard about it then. There was a lot more, because there was quite a bit of unusual testing for the times. It took him 6 months to even find a lab that could run one of the tests he wanted - but I have no idea what it was.
     
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  7. CCC

    CCC Senior Member

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    So the Pymble Grove Dr is booked out? That's a shame.

    Looking forwards to a good report.
     
  8. Snowdrop

    Snowdrop Rebel without a biscuit

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    If Dr Donohoe is a good Dr for people with ME perhaps someone here might volunteer his name to the MEpedia page. They are trying to create a huge resource base for the ME community. See: http://me-pedia.org/#Doctors You can view the contents and see 9) Doctors
     
    chrys likes this.
  9. taniaaust1

    taniaaust1 Senior Member

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    thank you for that.

    I have had one doctor where I are offer me that IV vitamin C treatment but unfortunately I cant get to his weekly clinic he does this in and its far for me to travel.
     
  10. Hotch

    Hotch Hotch

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    Sydney nosw Australia
    My dr doesn't do iv's. She put me on liposomal vit c - brand is livon. She says it is 80% as effective as Iv vit c. Maybe this is a good option if you can't get to have the iv's?
     
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  11. Hotch

    Hotch Hotch

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    Sydney nosw Australia
    If I am happy with Dr Mark Donohoe once I have seen him a few times I will be happy to add him to the list then. Cheers
     
    Snowdrop likes this.
  12. Snowdrop

    Snowdrop Rebel without a biscuit

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    I can only speak for myself but expect we all here hope it goes well for you with Dr D. :)
     
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  13. rose1

    rose1 Guest

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    Sydney, NSW, Australia
    How did your appointment with Dr Donohoe go? I looked at his profile the other day, but was put off by the consult fee.
     
  14. Hotch

    Hotch Hotch

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    Sydney nosw Australia
    Hi Rose1,

    Yes, unfortunately anyone who is any good with me/CFS is expensive. Since it is so complex and difficult to treat, anyone who has been willing to go down this path has had to put in ALOT of work. It is pretty much impossible to be up on all aspects.

    Dr Donohoe was a very nice man. It is too early to give an opinion of how successful he is at treatment yet as I have only had an initial appointment. The primary reason I was going to him was for testing for viruses and bacterias (v & b), which I have never had done. He is happy to do that. I had the Medicare tests a couple of days ago (which are free of course). He said they are not very sensitive so many false negatives, but if get a positive then I won't have to pay for the more sensitive tests for that and only have to retest the neg results. I said in earlier post, my current intergrative doctor treats CFS from an endochrine perspective. She is fabulous with this and I have had some success here. Dr Donohoe and my usual dr are happy to let each do their own thing and send a copy of test results to each other.
    A hint: When Drs write the sheets for testing, ask for a copy to be sent to you. As this is usually a long term condition it helps to have all this to show anyone if you choose in the future to see another dr.

    So sorry I can't really help yet. If you are 25 or under maybe consider dr Richard Schloefel at Pymble Grove NSW. He is incredibly difficult to get into, and just as expensive. However, from all reports he is considered the guru as far as Lyme and CFS is concerned.

    I would love to know a bit more about your condition. I hope someone else can help. Cheers, Hotch
     
  15. rose1

    rose1 Guest

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    Sydney, NSW, Australia
    Hi Hotch
    thanks for replying so quickly. I'll be interested to see how your future consultations go. I've also been wondering about the impact of viruses and bacteria on CFS. My main symptoms apart from fatigue are bouts of nausea, lightheadedness, chronic sore throat, poor concentration, losing words when speaking, tinnitus. These are all exacerbated by stress of any kind, including being asked to make a decision about anything or being asked too many questions, need to lie down after washing/drying my hair. When I have the nausea I find it difficult to do anything. However, I am still working, although will probably have a few weeks off soon and then cut my hours by nearly half as I feel I need to concentrate on getting my health back hopefully. I hate the unpredictability of this condition. I can have a reasonable morning and then flag in the afternoon, makes it really hard to plan anything.
    Still, I'm not bedbound so should count my blessings.
    Hope you get some answers soon.
     
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  16. Valentijn

    Valentijn Senior Member

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    Have you been assessed for Orthostatic Intolerance (OI)? It can cause most of those symptoms, and is often treatable and/or avoidable. Baths and showers are a big trigger (raised arms while standing) and laying down helps reduce symptoms by getting blood back into the brain.
     
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  17. rose1

    rose1 Guest

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    Sydney, NSW, Australia
    No I haven't but I'm seeing my GP today so will mention it. Thanks for the advice:)
     
    Valentijn likes this.
  18. btdt

    btdt Senior Member

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    Ontario
  19. btdt

    btdt Senior Member

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    @Hotch
    Do you have an update please?

    What testing was it worth it... what treatment ...can others do it?
     
  20. btdt

    btdt Senior Member

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    Did you have any odd reactions to this vit C? I have some tried it had a reaction now can't recall what the reaction was. Did you take it with water on an empty stomach?
     

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