The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

Dr. Chia current work?

Discussion in 'General ME/CFS Discussion' started by KRR, Feb 7, 2015.

  1. KRR

    KRR

    Messages:
    56
    Likes:
    16
    Over a year ago I had planned to do a phone consult with Dr. Chia, as his work seemed the best fit for me. I learned that I would need to go to a specialized lab locally for bloodwork that he would order, before the consult. Well, the two labs he deals with are both an hour away from me, and in all this time that trip has been too much for me with my severe fatigue, so I haven't done it yet.

    I'm considering the possibility of making this happen this year. But meantime, I haven't been following his work, and wondered if anyone can update me - any new developments I should know about? Or recent experiences to share?

    The other angle that seems to fit for me is the vagus nerve infection theory, and along those lines I've been practicing methods for balancing the autonomic nervous system. That approach seems to be a helpful thing in general although I haven't had significant results except for somewhat improved sleep.
     
  2. halcyon

    halcyon Senior Member

    Messages:
    2,307
    Likes:
    5,391
    I'd highly recommend getting the bloodwork done if you can.

    I just saw him for the first time at the end of January. He's still recommending Equilibrant and inosine for over the counter treatments. In addition he's prescribing Lamivudine (Epivir) and mentioned possibly using Zidovudine (AZT) as well.

    I believe the vagus nerve infection theory dovetails nicely with the enterovirus theory. Dr. Chia mentioned some recent work on EV71 that demonstrated that the virus could enter the CNS via the vagus nerve.
     
    Last edited: Feb 7, 2015
    KRR likes this.
  3. KRR

    KRR

    Messages:
    56
    Likes:
    16
    Thanks so much! That's very encouraging, and I'll look into those specifics. I had bought some Equilibrant but then had some doubts as to whether I should try it on my own in the meantime, especially since I'm so sensitive to everything.
     
  4. halcyon

    halcyon Senior Member

    Messages:
    2,307
    Likes:
    5,391
    I understand, I was quite hesitant to try it on my own as well but I'm glad I did. I recommend getting a pill cutter and starting off with 1/8th of a pill or even less. Dr. Chia told me that if you get obvious flu-like symptoms from a dose then it's too much and you need to take less. Over time you can slowly titrate up as your tolerance builds.
     
  5. KRR

    KRR

    Messages:
    56
    Likes:
    16
    Also, as a patient needing to conserve energy and zero in on the key research points, any particular recommendations for reading?
     
  6. KRR

    KRR

    Messages:
    56
    Likes:
    16
    Great, thanks for the encouragement. So I guess there aren't significant contraindications. I've never been able to clearly determine whether I'm more in the fatigue camp or the inflammatory camp, as I seem to have a lot of both.
     
  7. halcyon

    halcyon Senior Member

    Messages:
    2,307
    Likes:
    5,391
    @Hip has put together a solid list of enterovirus research from over the years. I'd start with Chia's papers first.
     
    KRR likes this.
  8. halcyon

    halcyon Senior Member

    Messages:
    2,307
    Likes:
    5,391
    The only contraindication I'm aware of is a history of autoimmune disease.
     
  9. Hip

    Hip Senior Member

    Messages:
    9,532
    Likes:
    15,114
    Regarding oxymatrine / Equilibrant, you might try reading this post.
     
    KRR and halcyon like this.
  10. KRR

    KRR

    Messages:
    56
    Likes:
    16
    Thanks so much for the excellent material!
     
    Hip likes this.
  11. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

    Messages:
    959
    Likes:
    3,960
    Can you get someone to take you? My son has improved quite a bit in the months he's been seeing Dr. Chia. He is very, very smart and experienced in finessing medications, doses, and timing in ways that I could never have predicted by reading of the experiences of others with the same meds.
     
    KRR and halcyon like this.
  12. Mary

    Mary Senior Member

    Messages:
    2,810
    Likes:
    6,305
    Southern California
    @KRR - I had the lab work Dr. Chia needed done at Quest labs or Labcorp, I don't remember which, but both are very common laboratories. I didn't have to go to a specialized lab. I would double check whether you need to go to a specialized lab --
     
  13. KRR

    KRR

    Messages:
    56
    Likes:
    16
    Thanks, I found out from Dr Chia's office that Quest and Labcorp are the only two labs that he deals with. So I asked for the requisition form for Labcorp. Those are what I'm calling specialized labs. I live in a good sized city but the only Quest or Labcorp labs are an hour in either direction.

    It gets tricky for me to get around, since many days I can't go out at all, and need someone to drive me anywhere, which is usually 10-15 minutes at most. Even just riding in the car for more than that is very stressful on my nervous system, and I can't plan in advance for when I'll be having a relatively good day, so it's hard to hire help or find friends whose schedules are flexible enough.

    Still, I'm setting an intention to get this done in the spring, trusting that a solution will present itself. I've been learning that you don't always have to know how the solution will show up, but trusting that it will work out somehow is the first step.
     
  14. Mary

    Mary Senior Member

    Messages:
    2,810
    Likes:
    6,305
    Southern California
    @KRR - I live in an area where we don't have specialized much of anything but we do have Quest and Labcorp so I assumed they were everywhere - that's too bad they're an hour away for you!

    I think that's a very good plan to make an intention to get it done in the spring, trusting it will work out. I'm sure it will.

    I'm sure you've looked into this, but have you had your cortisol levels checked? If they are high, it can cause anxiety and inability to deal with stress. Good luck with everything -
     
  15. Oredogg

    Oredogg

    Messages:
    53
    Likes:
    231
    Oregon
    KRR,

    I don't have the disease, but my wife has a very severe form of it (completely bed bound). Equilibrant has been the only medication, thus far, that my wife has shown improvement on. Start very slow and titrate up according to your symptoms. My wife started with 1/8 pill per day and now is up to 1/2 per day. Everyone responds differently. I have spoken over the phone with Dr. Chia multiple times (at no cost!). He is a caring, passionate and brilliant doctor, and is a great advocate for patients with this illness. I recommend you consult him in person, if you are able, and follow his advice. We cannot, as my wife is far too sick to make the trip from Oregon. However, we have been following his direction from afar, via phone discussion.
     
    KRR and halcyon like this.
  16. KRR

    KRR

    Messages:
    56
    Likes:
    16
    Thanks Mary. Yes, I had cortisol checked a while back - low in the morning, high at night, so obviously there are issues. But I think the nervous system issues are pretty complex, and the type of micromanaging I've done in the past has often made things worse, so I'm really looking forward to getting a better overview from Dr. Chia.
     
  17. KRR

    KRR

    Messages:
    56
    Likes:
    16
    @Oredogg , thanks for weighing in on this, and it's wonderful to hear that your wife is having such a good experience with Dr. Chia's protocol. If you don't mind my asking, how is the consult at no cost? I am planning a phone consult, which his office doesn't book until the lab results are in. But they told me his fee is $350/hr, and I do need to check back with them because it was over a year ago that I contacted them.
     
  18. Oredogg

    Oredogg

    Messages:
    53
    Likes:
    231
    Oregon
    I am not sure, but he has not charged me. I am a physician, so perhaps its more of a 'curbside consult', nonetheless he has been incredibly generous with his time. That speaks volumes to me of his character as a human being and doctor. I suppose with the full fee and appointment you get all the documentation that goes along with it. That could be very helpful for disability application, etc., if you go down that road.
     
  19. KRR

    KRR

    Messages:
    56
    Likes:
    16
    Thanks. Actually I've been on disability for 30 years, starting with ailments that I now know were related to CFS. It's been quite a journey, and I feel I'm at a turning point now, thanks to this forum for being a powerful catalyst for that.
     
    Sushi likes this.
  20. KRR

    KRR

    Messages:
    56
    Likes:
    16
    It just occurred to me - about Equilibrant being contraindicated if you have autoimmune tendencies, I saw a post suggesting that this extended to family members as well. My father had rheumatic fever as a child. I have always been negative for ANA, so doctors always ruled out autoimmune disease. Does it still sound like I'm okay to start Equilibrant on my own? (While I'm waiting for spring so I have a chance to get to the lab!) Dr. Chia ordered C-reactive protein, which is the only one on the requisition form that seems to screen for autoimmune tendencies.

    I started at ΒΌ tab last week, a few days later felt like I crashed, but it could have been unrelated. Really hard for me to tell, but I stopped it for a few days and was planning to go back to an even smaller dose, if my cheap pill cutter will cooperate!
     

See more popular forum discussions.

Share This Page