Phoenix Rising: The Gift That Keeps on Giving All Year Long
This holiday season Jody Smith turns her eyes to the people of Phoenix Rising and gives thanks for you all ...
Discuss the article on the Forums.

Seeing Dr John Chia on Friday, What Questions Should I Ask?

Discussion in 'ME/CFS Doctors' started by Jesse2233, Mar 1, 2017.

  1. Learner1

    Learner1 Professional Patient

    Messages:
    1,609
    Likes:
    2,854
    Pacific Northwest
    Chlamydia pneumoniae is not easy to kill. Oral azithromycin and rifampin did nothing except mess up my gut, and recently, 3 months of IV azithromycin, doxycycline, and rifampin seems to have failed as well.

    The cpnhelp website has stories of people on various antibiotics for years.

    My renowned specialist uses LabCorp, Quest Diagnostics, and various specialty labs.
     
  2. pattismith

    pattismith Senior Member

    Messages:
    1,070
    Likes:
    1,608
    How would you know if your Chlam Pneu are killed or not? Do you have a serology follow up? Or à PCR?
     
    Sancar and Isaiah 58:11 like this.
  3. Learner1

    Learner1 Professional Patient

    Messages:
    1,609
    Likes:
    2,854
    Pacific Northwest
    Yes. I will be discussing with my ME/CFS doctor soon and will see what he says.
     
    Sancar and pattismith like this.
  4. Hip

    Hip Senior Member

    Messages:
    9,947
    Likes:
    15,939
    Great reporting on Dr Chia's views @Jesse2233.
    That's fascinating!

    A quick glance at this study on the immune response to respiratory syncytial virus indicates that RSV induces cathelicidins, which are part of the intracellular immune responses that takes place inside cells, and should help fight the non-cytolytic enterovirus infections found inside ME/CFS patients' cells.

    RSV also seems to induce an unusual type of interferon, namely interferon lambda, which was only discovered relatively recently in 2003. This study says that interferon lambda plays an important antiviral role in coxsackievirus B infection.

    I am not sure if interferon lambda therapy is yet available; there are certainly research papers examining the benefits of interferon lambda therapy.

    I will have to study the RSV immune response further.



    Yes, it does take extended antibiotic treatment; but the problem also is that Chlamydia pneumoniae is hard to diagnose, a bit like Lyme. I have read that the Chlamydia pneumoniae tests results are somewhat equivocal; this may relate to the fact that Cp is an intracellular bacterium that hides inside cells (in studies on intracellular bacteria, these are often notoriously hard to detect).

    So even after being tested, you don't really know if you have a Chlamydia pneumoniae problem or not. That's my understanding. So perhaps your negative results from treatment might simply be due to the possibility that you don't have a Chlamydia pneumoniae problem.
     
    Last edited: Jan 19, 2018
    Jesse2233 likes this.
  5. used_to_race

    used_to_race

    Messages:
    18
    Likes:
    24
    So I saw Dr. Chia yesterday. I was the last patient of the day and we talked for almost two hours. I could go on about my own case but that's not interesting to you guys. The main thing to take away is that he said there's a conference in June at which he expects to hear more about these antivirals for EV. He also said that there are several companies, including a big American one, doing work on antivirals for EV. Apparently none of them have done extensive testing for whether these drugs can cross the BBB, but there may be an update on that in June as well. He thinks the competition among these companies will speed up development, and he plans to tell anyone who will listen what a big market the ME/CFS issue is for these drugs.

    He confirmed for me that he does indeed see better responses in males, younger patients, and those who haven't been sick as long. He also reiterated he sees a lot of Jews with this type of infection. Apparently Oxymatrine is very effective against Hepatitis B and there are some papers about this in China.

    I'm wondering, and maybe someone here knows: why doesn't he do more tissue biopsies to look for EV? My ARUP titers for all the ones he tests for were 1:10, low as can be. But he reckons there'd be virus found in my throat and heart tissues at least. A heart biopsy sounds scary (plan to talk to a cardiologist about this) but a throat biopsy seems pretty low effort.

    The only other things I can remember that haven't been discussed much on this thread: He told me that exercising heavily when you feel a bit better is a terrible idea and I need to stop doing that. I feel bad for my expensive carbon bikes just sitting there, but ok fine. We also talked about Ron Davis and Whitney Dafoe for a bit. This seems like kind of a personal thing so I don't want to go into this much, but I asked him why Whitney hasn't tried Oxymatrine and he says he doesn't know, but he talks to Dr. Davis sometimes in a more or less personal capacity and he may suggest it. Dr. Chia really doesn't like Valcyte, says it's super dangerous and that "certain" doctors (I think we all know who) are giving it out like candy and they don't have the evidence to back up its efficacy like they claim.

    I didn't get to ask him about Favipiravir, which is something I'd love to hear his thoughts on. Anyone here know anything about it? @Hip @Jesse2233 @Learner1

    Chia had me do a blood test for it so I would assume you can track the serology and see if it's going up or down. I don't know anything about the treatment though.
     
    perrier, Aroa, Hip and 1 other person like this.
  6. Aroa

    Aroa

    Messages:
    95
    Likes:
    493
    Spain
    Thanks for sharing @used_to_race

    Did he tell you anything about his collaboration with Maureen Hanson ?
     
    perrier likes this.
  7. Hip

    Hip Senior Member

    Messages:
    9,947
    Likes:
    15,939
    So your antibody tests for coxsackievirus B and echovirus at ARUP Lab were all very low at 1:10, which is well below the threshold titer value of 1:320 at which Dr Chia diagnoses a chronic active enterovirus infection.

    Did Dr Chia test you by stomach biopsy for enterovirus? That he says is the most reliable test, as it picks up pretty much all enterovirus infections, whereas the ARUP Lab tests don't cover all enteroviruses.

    If he has tested you by stomach biopsy and you are also negative for enterovirus there, is Dr Chia going to look for other viruses or bacteria as the possible cause of your ME/CFS? I know you said you may be positive for EBV. What were your fully EBV results by the way? Were you tested for active infection with HHV-6 and cytomegalovirus? The criteria ME/CFS doctors use for diagnosing active infection are summarized in the mini roadmap.

    You said elsewhere that you had adverse effects with Valtrex (some patients don't tolerate this drug very well), but another better tolerated drug for EBV is Famvir, and Valcyte works for EBV, HHV-6 and CMV.


    Regarding performing tissue biopsies: in the 1990s, muscle tissue biopsy to test for enterovirus by PCR was the norm in ME/CFS research studies. The problem with muscle biopsies however is that they are painful, invasive and leave a scar. This I believe is one of the reasons why Dr Chia pioneered the use of stomach biopsies instead, as stomach biopsies do not suffer any of these problems. Biopsies of the throat are painful though.



    Favipiravir (T-705) is one of the many drugs with anti-enterovirus activity which is still in the research and development stage, like many of the other R&D enterovirus drugs listed at the bottom of this post.



    By the way, did you ever get any answers to the questions that you were planning to ask Dr Chia. I'd be interested in the answer to your question 15: "Why would tenofovir have any effect in EV infections?" What I'd like to know is whether tenofovir works just for certain types of ME/CFS infections, like just for enteroviruses, or just for herpesviruses, or whether tenofovir works for all forms of ME/CFS.

    I think the reason tenofovir may work for enterovirus is because it potently inhibits IL-10, which is linked to enteroviral persistence.
     
    perrier and pattismith like this.
  8. used_to_race

    used_to_race

    Messages:
    18
    Likes:
    24
    Her name didn't come up during our discussion, and actually I'm unfamiliar with any of her work by name. He did mention Ian Lipkin but nothing really concrete was said about that either, just that he's trying to develop better tests.

    @Hip He didn't seem surprised that my blood tests for EV were all that low. My symptoms have all been fairly minor and I don't have any GI or cognitive symptoms at all. As a result he might not think a stomach biopsy would yield much either. Regardless, he didn't suggest one during our appointment. If Equilibrant doesn't work I'd be interested in additional testing. The only two tests that came up at all were Chlamydia Pneumoniae (1:128) and HHV-6 (1:40), both of which he said were about average for a healthy person so they're not an issue. CMV was negative. My EBV story warrants a whole discussion of its own, probably, but the results, briefly:

    I was feeling poorly for a long time, almost a year in fact, before I got an EBV panel done. I had a monospot test that was negative, then a few months later a positive. My EBV VCA IgG and IgM were positive on my first EBV panel. This stayed the same for a while, until eventually my IgM went negative (but this took a really long time). Recently I got another panel through a different lab that showed EBNA IgG and VCA IgM were both negative.... super weird. Chia and I discussed this and he said that he thinks my issue for a while was EBV/mono but the irregular immune response was bc of another virus present, he suspects of course an enterovirus. He also said that my bad reaction to Valtrex was telling, and it somehow indicates that EBV isn't the main problem for me. I wish we had more time to go through this.

    I didn't get to ask him about Tenofovir or any other antiviral drugs, unfortunately. He talked to me for a while about some Equilibrant case studies and the process of treating his son. One comment I have is this: according to Vince Racaniello, a Virologist at Columbia, most polymerases have similar structures so there is a lot of overlap in effectiveness among polymerase inhibitors. So an anti-herpesvirus drug might work for other viruses, and so on. This probably doesn't even apply to Tenofovir though, because it's a reverse transcriptase inhibitor. Which, btw, isn't even a process undergone by enteroviruses, is it?
     
    Aroa, Hip and perrier like this.
  9. halcyon

    halcyon Senior Member

    Messages:
    2,330
    Likes:
    5,457
    It does apply. All chain terminating nucleoside/nucleotide analogs work by the same principle. It’s the nucleoside/nucleotide with another chemical stuck on the side. It’s this extra bit that interferes with the polymerase/transcriptase when they interact with the chemical integrated in the viral genome. Same principal just applied to different processes depending on the virus. Reverse transcriptase is a polymerase. There are NNRTI drugs which don’t work by this principle but tenofovir is not one of them.
     
    Aroa, used_to_race and Hip like this.

See more popular forum discussions.

Share This Page