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First appointment with Dr. John Chia

Discussion in 'ME/CFS Doctors' started by RestingInHim, Oct 25, 2012.

  1. RestingInHim

    RestingInHim Realist

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    i have my first appointment with Dr. Chia on November 13. i've already had bloodwork done for lots of viruses for which i've never been tested as well as for natural killer cells.
    Any advice to help prepare me?

    thankfully resting...
    August59 and heapsreal like this.
  2. Andrew

    Andrew Senior Member

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    Here's what I did to prepare. I wrote a short explanation of my illness, made two copies, and took it with me to the appointment. I gave one to the receptionist to put into my records, so Dr. Chia could read it before he spoke with me. When I saw Dr. Chia, he told me summary was extremely helpful, and he went over the entire thing with me. I had my copy with me so I could follow along.

    Here's what I included in my summary.

    1. Onset: How fast this happened, what symptoms were, and how they changed. Luckily I had made some notes a couple months after being ill, so I used those to help remind me.

    2. Symptom Cluster: In this I described what symptoms are like now.

    3. Symptoms changes. I included what affects my symptoms, such as standing, stress, etc. I also mentioned some symptoms I had that only lasted several months and then went away. Etc.

    4. Misc. In this I mentioned that a coworker had gotten sick at the same time, and what she had told me. I also mentioned anything else that I thought significant.

    5. What has helped. What I have taken that has helped me, such as sleep meds, one supplement, pacing, stress avoidance.

    6. Other health problems. I mentioned even small things here, because they could be symptoms of something related to treatment, auto-immune problems, etc. I didn't try to second guess what would be helpful; I just listed them all.

    7. Questions and concerns: I briefly listed my questions and concerns about treatment.

    And as I do with all doctors, I had a list of medications and a list of supplements.

    By the way, be prepared to wait a long time. Bring a what you need, such as a bottle of water. I brought a jacket in case the AC was too cold.
    voner, justy, ukxmrv and 2 others like this.
  3. RestingInHim

    RestingInHim Realist

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    Thank you so much, Andrew! This is extremely helpful!! I would not have thought to do this. And I'm glad I asked early enough to get this together. Thank you for your speedy reply!

    How long ago did you see him? Was he able to help you?

    Thanks again...
  4. Andrew

    Andrew Senior Member

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    My first appointment was four months ago. I am not yet up to the level of medication he wants me to be up to. But so far I have no improvement.

    It would be nice to talk with other Chia patients, so maybe others can jump in. I'd like to know how others are doing too.
  5. RestingInHim

    RestingInHim Realist

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    I'm sorry to hear you haven't found any improvement. Since he has you on medication, he must have discovered something through your tests? Are you on anti-virals? My primary told me those can be pretty rough. Did he do testing beyond the blood work?

    Yes...it would be great if other patients of his would join in!
  6. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I have been seeing my Dr for 4 years now, improvements are slow and small, that I often don't realize them, until oh yeah this is better and this etc...

    I think it took over a year before I started getting those ah ha moments, probably closer to 2 years. Dr. Chia is not my Dr and I am probably not as severe as some, but I feel it is severe compared to how I used to be able to live my life. Now still it is just about work and maintaining a place to live and holding onto my job.

    GG
  7. Andrew

    Andrew Senior Member

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    He found Coxackie B at about 640 dilution level, which is pretty high. Some immune problems. He did a physical exam where he pressed on my abdomen to see if it hurt and where this was. Some spots hurt. He gave me Equilibrant. It's his own concoction. If you search here you can see threads about it.

    His basic theory is that we have persistent viral infection in the non-liquid tissue. If you search pubmed you can find some papers by him.
    merylg likes this.
  8. taniaaust1

    taniaaust1 Senior Member

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    I thought Andrews post to you about how he prepares for specialist appointment was great. I thought I'd share what info I get together and take in with me to any new ME/CFS specialist I see. I keep the below lists in a file on my computer (so easy to update when needed too) and everytime I see a new specialist I just print them off. Im then easily able to hand him the right list when he asks for info.

    1/ A list of all my current or relevent specialists/doctors and their phone numbers and contact details (needed if you are under a lot of doctors/specialists).
    2/ A list of all supplements and meds Im on with the dosages (needed if you are on a lot)
    3/ I sometimes take also a list of everything Ive already tried and has failed or Ive had bad reactions too (I note by each thing what happened as much as I can remember).

    4/ My Basic Non ME medical history list eg measles at 3 years old, Blood transfusion at 4 years old, EBV 15 years etc
    5/ A list of Family History eg Nanna FM, sister CFS, cousin ME, uncle ..systemic mastocytosis, dads 3 brothers Celiac Disease etc
    6/ A summary of how my illness first started, when it started etc (my onset was quite complex)

    7/ http://wwcoco.com/cfids/bernesx.html I have two copies of that printed out. One copy I have labeled.. "My ME/CFS symptoms" and have on it highlighted every symptom Ive found I get with this illness (which is for me, nearly every symptom on it.. and I also write on that the things Ive had with the ME which are missed on that very good list). I just photocopy another copy of that one Ive got all my symptoms marked on, every time I go to new doctor.

    On the second copy of that list .. I have it labeled... "Symptoms Ive had with the ME/CFS in the past 3 mths" and hightlight just the symptoms Ive had more recently.. I also date this (so it is useful to look back on, in a year or whatever. I do this "symptoms in the past 3 month" thing every time I see a new general doctor or ME/CFS specialist). This helps doctors be aware of what recent symptoms Ive had and be able to easily compare with how much worst I was before and what other symptoms I can get).
    * keeping such records from the past so you have a good history of your illness, may prove helpful at later dates if you ever need to go for disablity pension.

    8/ List of the questions I want to ask that doctor or tests I want to ask about.

    All the things I take, due to just recopying them and making small changes on them at times dont expend much energy. Its only the record of my symptoms past 3 mths thing and my question list that I need to do afresh to take to a new doctor so I can quickly get ready for a new specialist. (hahaha wish it worked like that.. the folder I keep a copy of all my test results in is always in a mess whenever I need to see a new doctor.. see 9/).



    9/ A folder of ALL my previous test results which I take too.
    I always ask for a copy of my test results whenever I see anyone, I learnt to do that the hard way when doctors ended up loosing test results and not being able to manage my case anymore as it all got too complex and hard to keep up with all the different docs I see.

    In the folder have a page with an index Ive typed at the front of it (another thing I have on a file so I can add a new test easily into the index and reprint it). This index has all the tests I have in my folder in alphabetical order... and all my tests are filed in the file I take with me in alphabetical order too. So a doctor can eiher request to go throu my whole file of tests or just request to see specific tests and I can quickly find the test he wants to see. (one thing I havent done but should is have a list of all my test abnormalities Ive had with the ME).

    As my test folder is sooo full.. I have a separate folder in which I keep all the letters from my specialists. (I take that to appointments to but usually leave it out in the car and just go and get this second one if a doctor requests to see letters from other doctors rather then just being happy with being able to see all my test results).
    voner, justy and merylg like this.
  9. Andrew

    Andrew Senior Member

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    Good list, Taniaaust1. I can see some stuff I need to add to my routine.

    One thing I neglected to mention. I purposely didn't tell John Chia I have CFS or ME. In fact, I no longer tell any doctor I have this. The name is too prejudicial. What I do instead is describe the symptoms. But if they were to ask if I had a dx, Then I would tell them.
    justy likes this.
  10. RestingInHim

    RestingInHim Realist

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    Thanks, Andrew. I'll look for that info.
  11. RestingInHim

    RestingInHim Realist

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    Riverside, CA, USA
  12. RestingInHim

    RestingInHim Realist

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    Dr. Chia required a diagnosis of cfs from my internist in order to see me, so the cat is already out of the bag!
  13. Andrew

    Andrew Senior Member

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    Okay, but keep in mind his theory and findings about CFS is not for a specific virus. It can be from a number of viruses. Just make sure he explains the tests, and that you get a copy. At my second appointment he got so talkative he never went over my tests with me. And I forgot to remind him.
  14. RestingInHim

    RestingInHim Realist

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    Thanks for the heads up!

    You sound a bit frustrated by your experience with him. Has he been of help to you...or is the jury still out on that one?
  15. RestingInHim

    RestingInHim Realist

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    My expectation, I think, is to have an opportunity to talk to a doctor, who at the least, gets it!! This would be HUGE!
    taniaaust1 likes this.
  16. taniaaust1

    taniaaust1 Senior Member

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    Bounced and still bouncing.. one of my CFS specialists is talking about refering me once again as thou he treats POTS, he's been unable to help mine... Everytime I get sent to another specialist, they usually manage to help or fix one thing (one of 92 symptoms/issues.. so that is one heck of a lot of bouncing Ive done and still doing.. its being an extremely long slow process as there are no ME specialists where I are). My latest specialist has 9 different things he's going to try to fix, so hopefully I will get further with him.

    Even if somone helps with just one thing or one symptom.. at least that is one step in the right direction. Best luck with your appointment.
  17. taniaaust1

    taniaaust1 Senior Member

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    Dr Chia would be one doctor in which it wouldnt matter at all what name you are calling it..as he'd form his own opinion anyway being the specialist he is. But yeah.. I completely agree that to take care how you refer to the disease when it comes to doctors who arent ME/CFS specialists who arent aware of all the contraversal views and everything else.
  18. justy

    justy Senior Member

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    Tanniaaust - thats a really good list of symptoms. She says at the end that most patients have around 18 of the symptoms and around 16 at any one time. I counted up mine and have had 48! - although not all at the same time, but most of them have been simultaneous - and the list doesnt even include all the symptoms ive ever been bothered by. Everyone of those 48 symptoms has been a major bother to me.

    (sorry to go off topic)
    It would be good to have a more general thread about how to prepare for seeing an M.E specialist - there is some great advice here that people may not read as they aren't going to see/havent seen Dr Chia.

    Good luck with your appt Resting.
    Justy.
  19. Hip

    Hip Senior Member

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    One thing Dr Chia talks about that is likely going to be a future breakthrough for treating of ME/CFS is a new hepatitis C antiviral drug in development, that Chia thinks will wipe out the non-cytopathic enterovirus RNA infection in ME/CFS patients.

    Dr Chia believes that enteroviruses are the primary cause of ME/CFS, and that these viruses need to be wiped out if we are ever going to properly treat and cure ME/CFS; but enteroviruses in the body exist in two distinct forms: the regular enteroviruses, and the non-cytopathic RNA enteroviruses. Non-cytopathic enteroviruses actually live inside human cells, so they are much harder to target and kill than regular enteroviruses that generally live outside human cells. Dr Chia thinks that these non-cytopathic RNA enteroviruses may be causing serious problems ME/CFS patients.

    However, this new hepatitis C antiviral drug coming out in the future may be able to eradicate these non-cytopathic enteroviruses.

    I am not sure of the name of this hepatitis C antiviral drug, but perhaps you might be interested to ask Chia for an update about it (and ask what it's name is!).

    If you look halfway down this page, you will see the reference to this hepatitis C drug, which to quote is: "A Drug Suggests Hope – there is some unexpected hope on the horizon, though. A hepatitis C drug under development will, he [Chia] believes, be able to knock off the [non-cytopathic] RNA that is causing havoc in ME/CFS. "

    Other articles on Phoenix Rising about Dr Chia's work and treatments:
    Oxymatrine | Phoenix Rising
    Interferon | Phoenix Rising
    Dr. Chia On Oxymatrine, Autoimmunity, ME/CFS and FM | Phoenix Rising
    An Interview With Dr. John Chia, M.D. Part I by Cort Johnson (8/08) | Phoenix Rising
    An Interview With Dr. John Chia M.D. Enteroviruses and Chronic Fatigue Syndrome Part II: Persistence, Treatment and the Future by Cort Johnson. | Phoenix Rising

    A video of a presentation given by Dr John Chia, detailing his work with oxymatrine and intravenous interferon treatments for ME/CFS, and his research into the double stranded RNA enterovirus infection (aka: the non-cytopathic enterovirus infection) he thinks is a primary cause of ME/CFS, is to be found >> HERE.
    Last edited: Dec 4, 2013
    Sparrowhawk likes this.
  20. RestingInHim

    RestingInHim Realist

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