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What about Dr John Chia from California or Dr Sharp in Texas? How about TCM?

Discussion in 'ME/CFS Doctors' started by Zuriel, Jan 2, 2011.

  1. Zuriel

    Zuriel

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    Happy New Year greetings from Down Under!

    We are from Australia and wish to use our limited savings to have our son treated in the US. He is currently under the care of a GP 'with interest in CFS'. This doctor has been treating 4500 patients since 1985, so it is very hard for him to be actively involved in caring for each individual patient. My son's condition has deteriorated rapidly and all this good doctor said was, "hang in there, there is hope".

    I heard about Dr Chia from the Invest in ME Conference. Would appreciate comments from his patients. He does not seem to have a dedicated, informative website.

    Any idea on the cost of investigations/ treatment/ consultation as an international patient of Dr Sharp? What is the length of stay we should be looking at on the first appointment?

    Also, has anyone tried traditional Chinese medicine? Has it a role in the treatment of ME/CFS?

    Cheers,
    Zuriel
    Aussie Newbie
     
  2. Esther12

    Esther12 Senior Member

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    Personally, I don't think there's any doctor who it's worth spending your limited savings on.

    It seems that children diagnosed with CFS are much more likely to recover than adults, but I'm not sure why that is (I don't know if anyone is).

    From all the stuff I've read, there do seem to be some consistent recommendations it might be worth trying to follow:

    Try to have your son eat a healthy balanced diet, and get a good solid nights sleep. Try and balance out his activity so that he isn't doing much more on some days and then much less on others (I know this is hard, and I struggle to follow it). Try to manage it so that he has some energy left to play about with and use on activites he enjoys.

    I don't think that you're going to be able to spend your money on a cure. It must be really hard watching your child suffer, and I'm sorry I don't have any great advice for you... it seems that children with CFS are more likely to recover as time passes, and trying to live as healthy a life as possible should make that more likely. Good luck with it, and hopefully he'll be better soon.
     
  3. leela

    leela Slow But Hopeful

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    I remember seeing a video about a lovely woman doctor who is having some success with symptom relief in ME patients in NZ--that's a bit less of a journey for you anyway--I'll see if I can dredge up her name. Maybe you know of her already?
     
  4. leela

    leela Slow But Hopeful

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    Couchland, USA
  5. aquariusgirl

    aquariusgirl Senior Member

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    hi
    sorry to hear of your situation.
    I am in the United States & I have struggled to find a useful doc.
    I did a phone consult with Dr Chia a while back. He charges $350 for an initial consultation.
    He kept talking for 2 hours apparently. I wound up with a bill for $700.
    He seems to be a dedicated physician. Very convinced that enteroviruses are the root cause.
    I came away thinking it would have been better to just do the testing through Arup Labs and then treat with equilibrant if the tests were positive.
    Long way of saying, his protocol is on the web.
    Can't you just ship some blood to Arup Labs?
    There are some Aussies on this board. You might want to speak to them.
    I think you do need a doctor to help you, but it seems to be a very hit and miss proposition to me.
    Everybody, including Dr Paul Cheney and Jose Montoya and Dan Peterson, are still feeling their way through this.. it seems to me....from what I read.
    Be careful how you spend your money.
     
  6. urbantravels

    urbantravels disjecta membra

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    If I were in your situation, and were determined to come all the way to the US to seek out the best CFS doctor for a child, I would go and see either Nancy Klimas in Miami or Lucinda Bateman in Salt Lake City, with an edge to Lucinda Bateman because her practice really deals with a diversity of fatiguing illnesses and she seems to have a very good handle on the issues with pediatric patients versus adult patients.

    Although I live geographically very close to Dr. Chia, I have not felt inclined to go and see him because I feel he is overly focused on his enteroviral theories, and I don't personally believe that is the major factor in CFS. I'm sure he is a fine and caring doctor, but my personal opinion based on what I have seen and heard of various doctors is that Lucinda Bateman would probably be your best choice in the US. But you may be able to find someone closer.

    http://www.fcclinic.com/
    Lucinda Bateman's practice website. You could give them a call and see what they have to say.
     
  7. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Concord, NH
  8. Zuriel

    Zuriel

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    Many thanks to all who responded with heaps of helpful information and suggestions. Looks like it will take a while to come to a definite decision with so much information by
    so many doctors on the web. Your contributions are much appreciated. Cheers.
     
  9. ixchelkali

    ixchelkali Senior Member

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    I agree that if I were in Australia I would try to see Rosamund Vallings in NZ before I would try coming to the US. From what I've read about her approach, it sounds similar to that of Dr Lucinda Bateman. I would choose Dr Bateman over Dr Chia, for the same reasons cited by unbantravels in post #6. I have been considering going to Dr Chia myself, because his practice is near my home and because I know that he understands the severity of the illness (having a son with CFS), but the cost is prohibitive and he does seemed focused on enteroviruses.

    I have no knowledge of Dr Sharp.

    Another reason I would try Dr Vallings before making a trip to the US is concern over the effect of the trip itself. Before I got sick I flew from California to Australia, and it was an exhausting flight. Plus, the time difference can lead to serious jet lag even in healthy people. I would be concerned that the trip could cause a severe crash for an ME/CFS patient.

    Even the best ME/CFS doctors in the US don't have a reliable treatment or cure. What they mostly have to offer is being knowledgeable about the effects of the illness and a willingness to run appropriate tests. Based on that, they try to set up a treatment plan to alleviate the symptoms. And there are so few good ME/CFS doctors in the US that most of them have long wait times to get an appointment.

    Why don't you try writing to some of the US doctors like Lucy Bateman, Daniel Peterson, or Nancy Klimas and see what they would recommend for someone in your situation? Perhaps they might have treatment guidelines or protocols that they would be willing to share with your doctor.
     
  10. Nielk

    Nielk

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    I agree with others that i would be very careful about intra continental travelling.
    Since I have been ill, I have traveled from the US to Israel (which is only about half the trip to Australia). The trip put me
    in a very bad place. It took a long time to recover.
    Before I would take on a trip like that and with the financial constrictions, I would debate and be pretty sure that the trip would be worth while.

    I also agree that maybe you could contact (e-mail or call) the doctors that ixchelkali mentioned and see if they can work
    with you long distance. In other words, you can have the labwork done and have it sent to them and they can review it and give you counsel as to how to proceed.

    That's basically what they do when we go to them. It's also a lot of work with trial and error because we each react differently.

    I would feel bad if you were to undertake this trip, spend all your money and come back empty handed which is a possibility.

    We wouldn't have this forum with all of us trying to find the best possible answer , if our doctors would be curing us.

    I wish you the best of luck and quick recovery for your son,

    Nielk
     
  11. hollie9

    hollie9

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    For both Bateman and Peterson there is a one year (at least) wait list to get in to see them. I've been checking today.
     
  12. WillowJ

    WillowJ Senior Member

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    In Australia, you might also check into Dr. Dr. DP Lewis, www.cfsdiscovery.com.au and Dr. Deed (sorry, no particular info for him).

    hollie, that's discouraging about the wait lists.
     
  13. Zuriel

    Zuriel

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    Australia
    Dr Lewis in Melbourne and Dr Deed is in Queensland

    The CFS sufferer is under the care of Dr Lewis. After the initial series of tests to confirm diagnosis, no further tests were ordered during the year to evaluate the effectiveness of the medication despite repeated pleas. All this while the sufferer's condition has deteriorated as new debilitating symptoms cropped up. Dr L is a good man whose hands are really tied with 4500 patients since 1985. Sufferer tried to play ostrich, but to no avail. The carer could only watch with hands tied to the back. We are still clinging on to that "hope".
     
  14. Tony

    Tony Still working on it all..

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    Melbourne, Australia
    Hi Zuriel,

    If Dr Lewis hasn't run any more tests he'll likely have good reasons for doing so. You should just ask him why he thinks it unneccesary. He'll be happy to explain his thinking. He has more than an interest in ME/CFS, his practice is devoted to this patient group. He's also been involved in research for many years and continues to be. Unfortunately we are a very difficult group to treat.

    For what it's worth, I tried TCM many years ago for about 8-9 months with a qualified doctor from China with no positive or negative results.
     
  15. Sammy

    Sammy

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    Seeing dr l ATM in my opinion is a waste of time. EVERYTHING is rushed, they dont send complete orders or required scripts or forms, the documented "conclusions/reports" have multiple errors. Im p*ssed off ATM. Oh one thing they always get right - Is the bill.
     
  16. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I am from the States and go to Europe for treatment! It is a hard trip but I rest there at the home of a fellow patient before returning.

    Most of the good US doctors have very long waiting lists and are also very expensive. I believe Dr. Sharp is no longer practicing. (read that here somewhere).

    I think some others have given you suggestions closer to home.

    Best wishes with these hard decisions.
    Sushi
     
  17. Sammy

    Sammy

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    Dr Garry Deed in QLD (PM 4 details)

    In my honest opinion The Donvale Clinic is a waste of time and money.
     
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    My experience with Dr deed is he doesnt go by a set plan for everyone. He does things individually and also will assist you in tests and treatments you request as best he can with what is available here in australia. He is open to requests about many different things to do with cfs/me, but will let you know through his experience and opinions and if a particular treatment is worth the risk to benefit ratio. His best assest is his compassion and understanding of cfs/me. I dont think any doctor can guarantee a cure, but a competant doctor should be able help with symptoms and improve functionality. So no doc has the golden goose that lays the golden egg but there are alot of doctors out there that are gooses, if u know what i mean, lol.

    cheers!!
     
    Sammy likes this.
  19. Sammy

    Sammy

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    Missed this one...

    Very well said Heaps...
     
  20. Esther12

    Esther12 Senior Member

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    I gave this advice earlier in the thread, and having read more since then, I don't think that I should have.

    I don't think that it's necessarily wrong, but I do think that there's very little evidence that this is a sensible approach to recommend to all people with CFS, or that it's worth making significant sacrifices to carry out such an approach. Increasingly I think that it's best for people to just do what they feel like and decide for themselves how to have as nice a time as possible (or let symptoms 'dictate' behaviour in an anti-Chalder approach).

    The more I read on CFS, the more tenuous almost all of the claims made about it seem!
     

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