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Dr. Chia's treatments

Discussion in 'ME/CFS Doctors' started by BBB, Dec 1, 2012.

  1. BBB

    BBB

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    My son age 23 just returned from his doctor, John Chia, (1-310-784-5880) an infectious disease doctor in LA, who thinks Ampligen is ineffective. Regarding valtrex, my son almost died on Valtrex given by another doctor. Dr. Chia believes in testing for the actual virus you have and treating that virus. His research is with entero viruses but is familiar with all. He uses interferon, immunoglobulin, anti-virals and herbs. He experiments with them in various combinations. I have more information if anyone is interested.
    August59 and birgisson Benedikt like this.
  2. Koivy

    Koivy

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    I plan on seeing Dr. Chia soon. I would love to have more information, anything you can tell me. Especially since I will be travelling.

    Thanks!
  3. CallieAndToby

    CallieAndToby Senior Member

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    I'd be interested also. Thanks for this information.
  4. CallieAndToby

    CallieAndToby Senior Member

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    Also does he do phone consults? And what are the expenses? I'm in Florida so it would be quite a distance for me.
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Just a general comment about phone consults: there are legal issues involved--something like docs can discuss your case but can't prescribe without seeing you. It may vary from state to state, and Skype might change the legalities--don't know--but I have come up against this.

    What I hear is that generally, to treat you, a doc has to see you initially and then once a year. Others may know more and the particulars of Dr. Chia's policy.

    Best,
    Sushi
  6. CallieAndToby

    CallieAndToby Senior Member

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    Thanks. I only asked b/c I was going to consult a neuro in NJ strictly by phone (decided that wasn't the right path to take).

    Seems like skype is going to be the best option, if that is a possibility. Traveling, not possible.
  7. AFCFS

    AFCFS Senior Member

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    There is a some pretty good information on a "Chia" search of this site. He seems convincing in his YouTube presence, would like to hear of clinical outcomes. In a very general comment, I at least like the fact that he defers much of the needed research to people who pursue such things, at one point saying "The smart molecular virologists can figure that out." His summary, a few minutes of the last video here (Dr John Chia State of Knowledge ME/CFS Research Workshop(Day 2) Review) made most sense to me, but included the others for some sense of completeness.

    Dr John Chia State of Knowledge Workshop on ME/CFS Research (Day 1) Part 1

    Dr John Chia State of Knowledge Workshop on ME CFS Research (Day 1) Part 2



    Dr John Chia State of Knowledge ME/CFS Research Workshop(Day 2) Review

    PS - I always have found it interesting, if not disconcerting, that these type of videos will have 500-1000 views after a year or so, and Justin Bieber - Boyfriend will have 195,000,000+ views after about 6 months. Maybe we could get Justin to sing a CFS song?
  8. Mouse girl

    Mouse girl

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    I wonder if anyone has known someone with classic CFS who did recover. I've never known of one in the 20 years I've been around this whole deal. Most people I know get better though. Just curious.

    By the way, I've heard good things about Dr Chia. He's good with paperwork.
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i just watched a vidoe clip of dr peterson and this question was asked of him about recovery. He basically said no but some either improve alot but not to 100% or they learn to live within their means and accept their limitations.
  10. Mouse girl

    Mouse girl

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    Do you have a link for the Dr Peterson clip? I love watching his stuff.

    I feel almost hesitant to talk about this on here as I know those who are newly diagnosed could get so depressed. But, I wish I had known a bit more when I was younger and I wouldn't have wasted all my money trying to get better. Hard situation. I got worse and then slowly got better to a plateaux level. I wouldn't say I've improved alot but I am happy in my life and accept where I'm at. I can do alot of normal things but in tiny doses.
    Roy S and ukxmrv like this.
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    http://simmaronresearch.com/research/videos/
  12. Mouse girl

    Mouse girl

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    Thanks for that link. I love seeing the MDs talk about this stuff. I saw Peterson once in Santa Barbara. He was really good, gave lots of info and it was so great to have confirmation of the drugs tried in the past and the viruses talked about in the past were just not relevant. Which was my experience also. And so refreshing to listen to a real scientist talk rather than someone just trying to make $ off desperately sick people.
    heapsreal likes this.
  13. SOC

    SOC Moderator and Senior Member

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    My uncle, who had mild ME/CFS, appears to have completely recovered. I wouldn't say that he has changed his lifestyle to accommodate the illness since his recovery. He's very active -- dancing, playing on a soft-ball team, sky-diving, playing with grandchildren. He took antivirals very long-term (years).

    My daughter is in remission after getting down to moderate/severe. She's back to living a normal college life, but she hasn't tried any serious sports, yet. She still has immune dysfunction and continues to take antivirals to keep herpesviruses suppressed. At her worst (before she started Valcyte), she was still managing to stay in college with a lot of help, but wouldn't have been able to finish the semester. I don't consider her cured, but she has not had any ME/CFS symptoms for about 18 months, so we consider hers a solid remission.

    That said, I believe they are very much the exception. Neither was ever severely ill, and daughter's worst stage went on less than a year before we jumped on it with Valcyte. While they do happen, I don't think we can all count on getting a full remission. :(

    I've had the same treatment as my uncle and daughter and had a substantial improvement, but I'm still far from remission. PEM and energy issues are my biggest problems atm. My guess is that since I was more severely ill and ill for longer than either of my relatives, I may have some long-term or permanent damage. Just a guess, though.
  14. Mouse girl

    Mouse girl

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    Oh, hey, glad to hear you have so many people around you who were significantly helped. Thanks for sharing that info. And wow, seams like a pretty strong genetic component there in your family. I have heard that the time you receive treatment is crucial which makes sense for any illness really. The reason why breast cancer has such a successful cure rate is due to early detection and treatment.

    Where they heck did you guys get valcyte though? Did you see Dr Peterson? My doc tried one very mild anti viral, the one for herpes, can't remember the name, not important, way back 15 years ago, but of course, it did nothing. When I saw Dr P talk, he mentioned that they had tried that drug too and found it ineffective. I certainly think I had a good doctor back then but he only could do so much and most docs I've ever asked about valcyte are way too scared to try it. I don't blame them either as they don't want to cause liver damage etc and don't have experience using the drug.

    It's all such a mystery just due to lack of research $. I do find that those who are mildly effected are, of course, way more likely to find things that help them or to get much better. I had an acupuncturist tell me that patients with CFS and fibro were harder to help. That's what I have. Who knows! I remember back when I was young, so sick and so broke and desperate, reading everything I could find. And I would read one thing to do with fibro and then read the opposite thing to do with CFS, like exericse for example. Oh, god, such dark days thinking back on all that. Thank goodness those days are gone.
  15. Andrew

    Andrew Senior Member

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    I'm seeing Dr. Chia and part of his exam is "hands on." He felt my lymph nodes, and pressed different places on my abdomen looking for pain, which might in turn mean an infection in the intestines. He would not be able to do this with a skype consult. The other part is taking a history, and blood work. I guess you could have your blood drawn locally and sent to the correct labs. You could call his office and ask.

    BTW, right now it does not look hopeful that he will be able to help me. He said he would expect improvement by now, if the Equilibrant was going to work. He is adjusting the dose to see if that helps, but he also gave me a prescription to try if that doesn't pan out. And maybe he has some other things I can try. But as of now, I'm not responding to treatment. Not that I had my hopes up very high.
    ukxmrv likes this.
  16. tyson oberle

    tyson oberle

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    Hi Andrew,
    Did Dr Chia have you do an endoscopy? If so, did he find any enteroviruses in your stomach?
  17. Andrew

    Andrew Senior Member

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    I haven't done the endoscopy yet. I plan to have it done when I get a colonoscopy, if they are able to reach the right spot. But when I asked, Chia said this is not required for treatment.
  18. tyson oberle

    tyson oberle

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    If an endoscopy is not required for treatment how does he know whether or not you have an enterovirus in your stomach? I thought that was his main focus?
  19. Andrew

    Andrew Senior Member

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    In my case he went by the other tests. My antibodies were 64 times normal, which it interpreted as meaning an active infection. Also, I experienced pain when his pushed on certain parts of my abdomen. And other tests showed imbalance in the immune system. Obviously, this is not the same as getting a actual culture, but considering the low risk of the treatment, it's enough to get started and see what happens.
  20. SOC

    SOC Moderator and Senior Member

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    Sorry Mouse girl, I guess I missed your post. I wasn't ignoring you. :)

    Since we also have Hodgkin's Lymphoma in 3 generations, I'm guessing we've got a genetic immune abnormality that affects our ability to control herpesviruses.

    All three members of my family saw Dr Lerner in Detroit MI, USA. He's probably the most experienced ME/CFS doc in using Valcyte. He was using it before it was even available in pill form, I think. While he is extremely careful using it, he is not afraid of it -- which makes him an exception in the medical world.

    My nature and training -- in engineering -- make me inclined to be a problem-solver. I thought I just needed to do my research, decide where to go for treatment and things would move forward. Boy, did I ever get a rude shock. Medicine is far from scientific -- definitely and art, and largely political as well. For ME/CFS, medicine is not much more than a chaotic mess. Fortunately, we have a very few clinician, like Drs Lerner and Peterson, and a bunch of researchers, like Drs Klimas and Montoya, who actually think like scientists and try to solve our problems. Now if only there was enough money to speed up the process! **sigh**
    citybug and merylg like this.

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