Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
http://phoenixrising.me/research-2/the-brain-in-chronic-fatigue-syndrome-mecfs/choline-on-the-brain-a-guide-to-choline-in-chronic-fatigue-syndrome-by-cort-johnson-aug-2005
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Seeing Dr John Chia on Friday, What Questions Should I Ask?

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

  1. Jesse2233

    Jesse2233 Senior Member

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    Hey @Hip

    He tested for the following pathogens:

    CMV IgM
    CMV IgG
    Coxsackie B Virus, Type 1
    Coxsackie B Virus, Type 2
    Coxsackie B Virus, Type 3
    Coxsackie B Virus, Type 4
    Coxsackie B Virus, Type 5
    Coxsackie B Virus, Type 6
    Echovirus 6
    Echovirus 7
    Echovirus 9
    Echovirus 11
    Echovirus 30
    Chlamydia pneumoniae IgG
    Chlamydia pneumoniae IgM
    HHV 6 IgG
     
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  2. Hip

    Hip Senior Member

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    Thanks @Jesse2233 and @used_to_race.

    Would either of you guys happen to know which lab Dr Chia used for the CMV and HHV-6 tests? And the Chlamydia pneumoniae test for that matter.

    I am trying to get more info on which tests are used by the various renowned ME/CFS specialist doctors, and if possible, when the results come in, the threshold at which they consider the infection to be a chronic active infection.

    Strange that Dr Chia did not test for EBV. Is that perhaps because you had been previously tested for EBV?
     
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  3. Diwi9

    Diwi9 Senior Member

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    @Hip - The question is not directed to me, but I have Dr. Chia's requisition form right next to me, so I'll share with you. Also, I'm seeing him in less than 2 weeks...so my mind is on this right now.

    Quest Diagnostics requisition form:
    37111 C. Pneumoniae AB PHL
    374 CK, Total
    403 CMV IGG AB
    8503 CMV IGM AB
    59117 Coxsackie B Virus AB
    375 Creatinine W/EGFR
    59110 Echovirus ABS
    34282 HHV6 AB IGG IGM
    7903 IGG Subclasses
    539 Immunoglobulin A
    7197 Lymph Subset PHL
    4420 C-Reactive Protein

    ARUP Labs:
    59117 Cosackie
    59110 Echolvirus
     
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  4. ebethc

    ebethc Senior Member

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    are you going to add the labs to your CFS Roadmap?

    also, do you know if there is a commercial test available for the 17 cytokines that were linked to CFS this past summer at Stanford?
    https://med.stanford.edu/news/all-n...associated-with-chronic-fatigue-syndrome.html
     
    Last edited: Jan 16, 2018
  5. Hip

    Hip Senior Member

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    That's fantastic, thank you very much Diwi9.

    Looks like he did not test you for EBV either. Maybe Dr Chia is not a believer in EBV-associated ME/CFS?



    Yes, that's the general idea. This is so that ME/CFS patients can know how each doctor tests for infections and other factors.

    I would like to know which lab tests are used by each ME/CFS clinician-researcher — people like Dr Daniel Peterson, Dr Nancy Klimas, Dr Charles Lapp, Dr Andreas Kogelnik, etc — so that I can add them to the roadmap.

    And if possible, I would like find the threshold titer each doctor uses for diagnosing a chronic active infection, which they may then treat with antivirals or immunomodulators (for example, in the ARUP Lab enterovirus tests, Dr Chia diagnoses active infection at a threshold titer of 1:320 and higher).

    I have already got this info for Dr Chia's enterovirus tests, Dr Lerner's herpesvirus tests, and Prof Montoya's herpesvirus tests, but don't have much info from the other ME/CFS doctors and other ME/CFS tests.


    I plan to start a new thread on this, asking people who have been to one of these main ME/CFS doctors what tests were used. Getting the thresholds for active infection might be harder though.



    I don't know where there are tests available, but in most cases I don't think cytokines tell you much. I have a folder on my computer of various ME/CFS cytokine studies, and they are generally pretty inconsistent. One study will find a particular cytokine to be high, and the next will find it to be low or normal. The only quite consistent cytokine in ME/CFS is TGF-beta, which is higher in ME/CFS.
     
    Last edited: Jan 16, 2018
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  6. used_to_race

    used_to_race

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    Actually, there's been a lot of confusion with regard to EBV in my case. After my first big relapse, I tested positive for EBV IgG and IgM, and IgM stayed positive for a year. But I've never tested positive in an EBV PCR. I've also tried to take Valacyclovir in a protocol similar to Lerner's, but had no results. The only thing I've responded to is a course of Azithromycin.

    Dr. Chia wouldn't know about this specifically, as I'm seeing him for the first time next month. I can ask him why he didn't test for EBV during my appointment, but my impression is that he must not care very much about it with regard to CFS.
     
  7. Hip

    Hip Senior Member

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    If you look at Dr Martin Lerner's abortive infection theory of ME/CFS, he proposes ME/CFS is caused by abortive herpesvirus infections in the tissues. Such infections can be chronic, but they produce no new viral particles, hence there is little virus in the blood — so no virus for PCR to detect. That may be why in ME/CFS antibody titers can be high, but PCR blood tests negative.

    Antibody titers measure the immune response to infection, which may be high if there is an ongoing abortive infection in the tissues. I don't think Lerner used PCR; he would always go by antibody titers to detect what he believed were chronic herpesvirus abortive infections in ME/CFS patients.

    The non-cytolytic enterovirus infections that Dr Chia thinks causes ME/CFS can also be thought of as a sort of abortive infection, and non-cytolytic infections also do not produce any new viral particles. Thus here also, a blood PCR will often be negative, even when enterovirus antibody titers are high in an ME/CFS patient.

    But if you perform PCR on the muscle tissues of ME/CFS patients with chronic enterovirus, then you do get a positive result.



    I have heard Dr Chia say that some of the Australian EBV studies on ME/CFS are "bullshit," so I have the impression he is not convinced about ME/CFS due to EBV. I have no idea why. There are several studies showing that around 10% of people get ME/CFS after mononucleosis, which is usually caused by EBV. So that seems quite convincing evidence that EBV can cause ME/CFS. However, I'd like to understand Dr Chia's views on EBV and ME/CFS.

    I know that he does not rule out EBV entirely, because in this published letter by Dr Chia, he finds that EBV is the cause of ME/CFS in 6 out of 200 patients he tested.
     
    Last edited: Jan 16, 2018
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  8. Jesse2233

    Jesse2233 Senior Member

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    My understanding is that, given his research, he believes enteroviruses to be the primary cause but doesn't entirely rule out other pathogens
     
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  9. Hip

    Hip Senior Member

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    According to Chia's published letter, he finds enterovirus the most common cause, in 109 out of 200 ME/CFS patients, but in second place surprisingly is Chlamydia pneumoniae, in 18 out of 200 patients. Though I have almost never come across Chlamydia pneumoniae ME/CFS patients on this forum.
     
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  10. Abha

    Abha Abha

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    Hi Hip,
    I have positive chlamydia pneumoniae infections from my test results with Dr Cecile Jadin in Johannesburg.I'll need to check those to see what it stated.From what I remember it is very difficult to treat.There are doctors who write about such on the web(using drug combinations).I did mention such things to my GP but as usual nothing ever came of it(or the drug was unavailable or too expensive?)
     
    Last edited: Jan 17, 2018
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  11. Hip

    Hip Senior Member

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    Azithromycin or rifampin can be used to treat Chlamydia pneumoniae.
     
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  12. Isaiah 58:11

    Isaiah 58:11 Senior Member

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    I haven't been tested by ARUP, but I supposedly have both based on my neurologist's interpretation of Sonora Quest labs. I was just looking at Dr. Lerner's treatment of C. pn. Last night (or was it Mycoplasma? I test + for both...) and was surprised to see that he treats until IgG goes down to normal range. Last I knew mine was still high and I still started getting porphyria type symptoms after my last round of antibiotics (in Oct., for Staph) and my lungs have hurt ever since.

    I wonder what it takes to prove infection and get treatment for these things. It is easy to find people who say you have xyz infection, but nobody seems to want to do anything about it.

    Edit: I went and found my notes. Dr. Lerner wrote that about mycoplasma pneumoniae. Maybe *that* is what I need to treat, though I remember specifically that C. pn. is the one known to cause porphyria.
     
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  13. Hip

    Hip Senior Member

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    It's usually only the ME/CFS specialists that will provide treatment for the sort of infections found in ME/CFS. A regular infectious disease doctor usually won't treat. In many countries, including the UK, it's hard to find any ME/CFS specialists, so patients may have to become their own doctors.
     
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  14. Jesse2233

    Jesse2233 Senior Member

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    As it so happens I'm seeing Dr Chia tomorrow:

    Going to ask the following:
    1. How can I differentiate between primary POTS or primary ME/CFS?

      I have orthostatic intolerance, and limited stamina / lightheadedness, but I don't think I have flu-like post exertional malaise.

    2. Can Coxsackie B4 cause POTS as a standalone condition?

    3. Is a gradual return to exercise using a recumbent bike and light weights appropriate for my case?

      There is a POTS exercise protocol I’ve been considering

    4. Might photopheresis help the immune system respond better to a chronic Coxsackie B4 infection? Or help reduce the autoimmune reaction?

    5. Would a cocktail of various ARVs be more effective than just Tenofovir or Lamivudine alone against Coxsackie B4?

    6. What are your thoughts on GcMAF?

    7. Any update on the Coxsackie antivirals from Belgium?
    Leaving off the EBV question as others are asking
     
    Last edited: Jan 18, 2018
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  15. Sancar

    Sancar Sick of being sick ~ and so is my walking buddy

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    Great ?s ~ A ? For you ~ how r you doing? Still on IVIG? Is that helping? Did you discuss the Zithromax or Rifaxim with Dr Chia? Have you ever discussed Lamivudine with him?
    ~ So glad to hear the HBOT is giving you relief. I truly believe our bodies/cells are starved for Oxygen. It is common sense when you realize we aren’t active like most of us were prior to ME CFS, thus less oxygen intake. Especially the benefit of extended aerobic type exercise.

    As always THANK YOU @Jesse2233 for your greatly informative posts!
     
    Last edited: Jan 18, 2018
  16. used_to_race

    used_to_race

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    I've read Lerner's publications, and even tried Valcyclovir myself. However, I became much sicker after about 5 weeks of 3g/day (I weigh about 67kg), so I didn't come close to the 3-4 months needed to even begin to see results. Maybe one day I'll try again if I have a doc's support. In any case, I always wondered if there's anything to substantiate Lerner's proposed mechanism here. I understand how the immune system could be preventing the virus from completing its infectious cycle, while viral proteins are still synthesized by the cells' ribosomes or whatever. However, is this documented anywhere with EBV, or with any herpesvirus for that matter? I get that Lerner also published some encouraging results, but these weren't RCTs as far as I remember, and the broader CFS community seems to have had much more limited success with antivirals (although the Stanford folks seem to really like their use as well).
     
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  17. used_to_race

    used_to_race

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    Nice questions, hope you can get some good info from Dr. Chia. I've noticed you're trying to break down treatment into individual viruses, which I think is probably a smart thing to do. A couple questions for you, as well as general points of discussion:
    1. Do you mind sharing some details on your lab results, as ordered by Chia? Were you positive for any species of enterovirus (cox/echo)?
    2. Follow-up to the idea of Chia testing for enterovirus: He uses a specific lab (ARUP) to do these blood tests, and he also does stomach biopsies because if the infection isn't really getting into the blood then it's hard to test for, fair enough. But I have to say it makes me a bit skeptical that there's only one lab that can really get consistent results for enterovirus blood tests, and that's the one he uses. Chia seems like an amazing doctor and an intelligent guy, but it aaalmost seems to me like he's reaching a bit on the prevalence of enterovirus in his patients. Like the folks on the "This Week in Virology" podcast like to say, if there's only one lab that can get a positive test in one certain way, there's probably no virus really there. I trust Dr Chia and look forward to seeing him myself next month, but it's always good to be skeptical I think.
    3. If certain viruses cause certain symptoms, it'd be nice to try and tie my own symptoms to individual pathogens and treat them. Basically all I have is sore throat, mild fatigue, and occasional runny nose and headaches. I get very little PEM, no POTS, no GI issues whatsoever, no joint/muscle pain or even weakness. I basically just feel a bit ill like I've got an upper respiratory infection. I wouldn't even say I get brain fog. I used to run track and even on some of my worst days, I think I could give you a sub-5min mile if I had to. Does this mean I'm likely to have fewer infections? Also does this mean I'm less likely to show high titers? If so does this mean I should probably look into getting a stomach biopsy done?
     
  18. Jesse2233

    Jesse2233 Senior Member

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    No more IVIG (insurance wouldn't cover it) and decided not to do the antibiotics. I did discuss Lamivudine with Dr Chia, but decided to hold off for now

    Yes I agree!

    Of course! :) Hope you are doing well Sancar!



    • Yes I was positive for Coxsackie B4 with a titer of 1:640 which is the maximum ARUP measures


    • It's an open question. Dr Chia has good reasons for his views, and often does a stomach biopsy to confirm the presence of virema. It's certainly possible there's no pathogen and it's just a broken immune / metabolic response, likely different for different people.


    • I'm not sure, those would be good questions for Dr Chia. It sounds like the pathogen is in your blood and not CNS / heart which likely means there's a better chance for effective treatment.
     
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  19. Jesse2233

    Jesse2233 Senior Member

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    Had my 5th appointment with Dr Chia today. Overall he is encouraged with my progress and is hopeful that I will continue to improve. He says that if you're improving the prognosis is good. As usual we had a very interesting discussion...

    First answers to the questions:
    1. How can I differentiate between primary POTS or primary ME/CFS?

      Symptoms depend on where the viral RNA is located in brain tissue
    2. Can Coxsackie B4 cause POTS as a standalone condition?

      Yes if it affects a certain part of the brain stem

    3. Is a gradual return to exercise using a recumbent bike and light weights appropriate for my case?

      Yes careful exercise is ok but caution is necessary since people can relapse from intense cardio. One should wait for 6 months after being symptom free before returning to full activity.

    4. Might photopheresis help the immune system respond better to a chronic Coxsackie B4 infection? Or help reduce the autoimmune reaction?

      No. It will not help clear most the actual virus since it's in tissue, although it may help with virema in white cells. However symptoms are not caused by the actual viral RNA, it's the immune response and how it affects organ function (e.g. brain, heart, muscle).

      So if photopheresis modulates the immune system in the right direction it could in theory produce a remission even if the viral RNA is still present.


    5. Would a cocktail of various ARVs be more effective than just Tenofovir or Lamivudine alone against Coxsackie B4?

      He doesn't know, he's still tabulating the results of his tenofovir patients.

    6. What are your thoughts on GcMAF?

      We got sidetracked and I did not get to this question.

    7. Any update on the Coxsackie antivirals from Belgium?

      The team in Belgium is being tight lipped, but Dr Chia is going to visit them in June, present his paper on Coxsackie virus and colon cancer, and try to get an update on their antiviral research.
    Some other things we discussed:
    • Dr Chia is working with Maureen Hanson. He is hoping that she will share his findings with Dr Lipkin, and that Dr Lipkin's new viral sequencing tool will be able to detect the very small amounts of enterovirus particles that show up in patient blood.

      He doesn't think the fecal matter transplant trials will very useful because it will not clear enteroviruses from the intestinal wall.
    • He believes photopheresis is a promising treatment, thinks that it may be helping, me and hopes it will continue to help. It was his first time learning about it in depth, and it was fun to explain it to him (as he is always explaining things to me). He was very open to learning more and interested to know how exactly it worked.

      He thinks ozone / UBI works in a similar way in part by destroying white blood cells so that new healthy ones can be produced. He thinks it's important to shift the Th orientation of the immune system.

      He believes that the new T-cells produced in the thymus (after photopheresis) will not have the pathological clonal expansion that the ones being deactivated by photopheresis have.

      He does not think photopheresis is a cure (because it does not get rid of the enteroviral RNA in tissue), but thinks it may help reduce symptoms and perhaps induce remission.

    • We again discussed Dr Mark Davis' work and the possibility of using CAR T-cell therapy to treat immune cells so that they can respond to chronic enteroviruses. He is confident that Davis will find enteroviruses as the mystery antigen and that Lipkin will confirm.

    • He thinks more clinical trials should be done instead of all the theoretical research

    • He said that low dose IVIG is often more effective than high dose. He spoke of a severe POTS patient who was cured after one one low dose of IVIG.

      He said high dose IVIG can make some people worse (gave an example of a severe Lupus patient with a likely enterovirus infection), and require that they get plasmapheresis to clear out the excess IgG.

    • Mentioned that interferon is likely the cytokine that produces fatiguing symptoms. Said a certain percentage of Hep C / B patients treated with interferon will go on to develop something very similar to ME/CFS.

    • He said that there are two acute infections that can shift the immune response back into a healthy state: influenza and human respiratory syncytial virus (RSV). He said that he had an ME/CFS patient who was very ill, got an RSV infection and went into full remission (which lasted for at least 5 years, last time they spoke).

      He said it was a good sign that I got a fever last week (due to the flu) and that my immune system is starting to respond in a normal way again.

    • He does not think enteroviruses destroy tissue or cause permanent organ damage (in most cases). He thinks that instead they impair function by producing immune inflammation. He says that the immune inflammation is of a different type than traditional autoimmune diseases (eg MS, RA, Crohn's), and that it also does not cause permanent tissue damage.

    • He said my throat and abdomen still show some signs of a enterovirus infection (even though I have no symptoms in either location).

      He said my complexation, eyes, and alertness are better than the last time I saw him but that I'm still a bit pale.

      He would like to do another viral panel in 5 months, and possibly a stomach biopsy.

    • He is familiar with my POTS cardiologist Dr David Cannom and is open to his POTS pharmacological treatments to improve functionality.
     
  20. Jesse2233

    Jesse2233 Senior Member

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    Oh forgot to mention... Dr Chia said he hopes Jen Brea gets the Oscar because it would attract more research dollars. He said it would be like Rock Hudson and HIV
     
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