Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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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. flitza

    flitza Senior Member

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    I think this kind of Th2-Th1 shift is what Dr. Chia believes Equilibrant accomplishes, when it works.
     
  2. mrmichaelfreedmen

    mrmichaelfreedmen

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    I had very little to no side effects on lamivudine, if that's any consolation.
     
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  3. Hip

    Hip Senior Member

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    Me neither, I found Epivir to be one the most easy-to-tolerate drugs I have tried, and I am often sensitive to meds and supplements, with many worsening the neuropsychological symptoms I have.

    The only thing I found with Epivir is that it makes me slightly more tired and sleepy for a few hours after taking it; but I actually put this effect to good use, by taking it around 1 hour before I plan to go to bed, so that this sleepiness helps me get to sleep. I have been using doses of 200 mg taken once daily, 1 hour before bed.
     
  4. Never Give Up

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

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    Any improvements yet?
     
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  5. Hip

    Hip Senior Member

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    I'd previously tested Epivir 200 mg daily for 50 days, without noticing any effects. Then I stopped when my box of tablets ran out. Now I am re-testing, and am only on 40 days of Epivir so far, without noticing much, but I plan to take it for longer this time.
     
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  6. Jesse2233

    Jesse2233 Senior Member

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    Just had my 4th appointment with Dr Chia. We had a good conversation

    @Hip @halcyon @Hope01 @flitza

    Some notes:
    • He's interested in the T-cell expansion findings of Mark Davis. He believes the mystery antigen will end up being an enterovirus. He says that similar T-cell expansion happens in the context of colon cancer which has been linked to enteroviruses.

      He said Mark Davis' findings are good news for patients. It means that T-cells can be removed from a patient, treated with other T-cells that have immunity to said antigen (e.g. an enterovirus), and re-injected. He said Nancy Klimas carried out a similar experiment which removed T-cells and treated them with IL-2 (he said IL-2 is too toxic to receive directly). He said the ME patient who received this experienced profound benefit for a month but it has not been repeated due to lack of funding.

      He thinks that besides new antivirals, this is the future of ME/CFS treatment.

    • He mentioned that he is consulting Maureen Hanson's research

    • He has some patients who have benefited from HBOT. He believe it helps by increasing blood flow to the brain and counteracts the downstream effects of enterovirus. He wonders if long-term use of HBOT can help remodel brain blood flow. He does not think it has direct antiviral effects.

    • We talked about IV ozone. He said it's effective for HIV (as seen in Europe), but less so for enteroviruses since they tend to be in tissue not serum. He said most of his patients have not benefited from it (this is the opposite of what Dr Chheda told me, but I should add that she sees a different set of patients, and both doctors are operating with smaller sample sizes where reporting is anecdotal and of a snapshot timeframe).

    • His nurse said response rate to DHQ has been underwhelming with most patients not noticing any benefit

    • He spoke well of Ron Davis' research / patents and is encouraged that he's looking for RNA viruses in his samples. He also said he has had phone calls directly with Ron which is encouraging all around.

    • He said that it's too soon for patients to try rituximab, he wants to see Phase 3 data. He is concerned that Scandinavian patients have a homogeneous gene pool and thus a specific genetic predisposition to autoimmunity and thus a response to rituximab. He said that he knows 12 US patients who tried Rituximab and that only 2 benefited (who clearly had B-cell mediated autoimmune conditions)

      He doesn't know if it could make a latent enterovirus condition worse

    • He believes inosine works by modifying the RNA nucleotide coding of latent enteroviruses so that the immune system can identify and fight them, and that some patients experience a fever followed by significant improvement because of this. He says it should always be taken with Equilibrant.

    • He said that prednisone can make patients remarkably better for a short period of time. He talked about two patients who were returned to near full health for two weeks. BUT... when they tapered off they got much worse and ended up in the hospital. He believes it allowed a latent enterovirus to bloom and cause encephalitis.

    • He said that SCIG can help some severe bedbound patients significantly

    • We talked about Dr William Weir's 1 in 2 tenofovir results. Dr Chia likes tenofovir but thinks its response rate is lower and should be taken in conjunction with Equilibrant for enteroviruses.

      He thinks that Weir's patients may have a different strain of enterovirus more common in the UK (perhaps coxsackie B5).

      I should note that Weir's tenofovir protocol is 6 months min, whereas Chia's is 1 month min, so perhaps that explains the difference in response rates.

      Dr Chia said he has treated around 35 patients with tenofovir but that it's still early for many of them and will have more information soon on their response rate.

      He said that for patients tenofovir helps the result is significant

    • He thinks that some ME/CFS patients have other viruses underlying their condition and may benefit from drugs such as Valcyte (he gave Jenn Brea's experience in Unrest as an example)

    • I handed him some NIH advocacy work I had done in support of enterovirus research, and he was happy and said he hopes they look into it more deeply.

    • I am seeing him in 3 months to discuss tenofovir
     
    Last edited: Oct 6, 2017
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  7. duncan

    duncan Senior Member

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    Ok, but first, can someone please explain to me why anyone should think that Davis has it right concerning Bb, ie, I believe he seems to think that chronic Lyme= an autoimmune issue. Fair enough. But if I am going to buy into his theory about ME/CFS, I need to know he got it right about Lyme.

    Did he?
     
  8. Jesse2233

    Jesse2233 Senior Member

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    I'm not sure, good question. My guess would be that Chronic Lyme is autoimmune (vs a chronic pathogen) given that long term antibiotics don't seem to help most of them very much, but I don't think anyone really knows
     
  9. duncan

    duncan Senior Member

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    No one does know.. You may well be right in that persistent Lyme is an autoimmune issue. Or it may be reflective of a persistent infection. How does Davis distinguish between the two? Do we know? Might this impact the prism thru which he studies ME/CFS?
     
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  10. Jesse2233

    Jesse2233 Senior Member

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    I don't think he knows either. He's investigating both possibilities. It could always be a vicious cycle of both
     
  11. duncan

    duncan Senior Member

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    This is what we pay them to do. To make a call. To decide.

    We can disagree, but at least we are arguing substance, and not ephemeral bullshit from the psychs.

    My ME/CFS doc might get it wrong, but I believe he/she is trying, and not just laying a place holder in the latest version of the DSM v .

    So researchers like Davis get good grades from me right from the getgo. Only I'm a little vague on how he goes from A to B, and it would be a good thing to see him address that. He's probably right, but he could still be wrong.
     
    Last edited: Oct 7, 2017
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  12. Never Give Up

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

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    You get the greatest information from Dr. Chia, @Jesse2233! Well done!

    What are your next steps?
     
    Hutan, Hip and Jesse2233 like this.
  13. Jesse2233

    Jesse2233 Senior Member

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    • Continue mHBOT as it's been having a noticeable positive effect
    • Continue nutritional IVs based on my NutrEval results
    • Continue a ketogenic / autoimmune diet
    • Likely continue IVIG
    • Keep pushing locally for plasmapheresis
    • Begin taking inosine per Dr Chia's advice
    • Trial Corlanor (ivabradine) w/ my cardiologist
    • Trial oral Poly-MVA
    • Continue to hunt for autoantibodies in my bloodwork
    • Consider Zithromax and/or Rituxan at my next follow-up w/ Dr Chheda
     
  14. Never Give Up

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

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    That’s a great list!

    Is your insurance covering your mHBOT?

    What is poly-MVA?

    Have you seen a neuroimmunologist to help you hunt for autoantibodies? The seem to be way ahead of the game.
     
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  15. Jesse2233

    Jesse2233 Senior Member

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    Thanks @Never Give Up!

    My insurance isn't covering mHBOT and the expense of it (at $90 / session) is adding up. So I'm going to rent (on a rent to buy plan) a slightly used unit from a private seller at a very reasonable rate. That way I can use it twice a day (morning and night) and not have to drive 90m roundtrip to the clinic.

    Poly-MVA is a modified version of ALA that is purported to have excellent benefit for mito function (more on it in this post http://forums.phoenixrising.me/inde...on-krebs-cycle-enhancement.54677/#post-916558). It's a bit expensive so I'll only continue taking it if it makes a major different.

    I would really like to see a neuroimmunologist but I can't find any who will see me locally. Have any leads?
     
  16. Never Give Up

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

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    Ninety miles is a long trip. How big is the machine you are renting/buying? What has it done for you so far?

    There was a great neuroimmunologist down here, but he is having a major health problem and not currently seeing patients. Have you Google “neuroimmunologist” plus your city? I think they tend to work at university medical centers.
     
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  17. mrmichaelfreedmen

    mrmichaelfreedmen

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    @Jesse2233

    IV Ozone does not work. Have done 2 dozen infusions with very little to no effect.

    DHQ has been similar, went up to 500mg/day.

    FYI: Poly-MVA has very limited and poorly constructed in-vitro testing to back it's claims for an over inflated price tag.

    Did you ask for his current view regarding the Oxymatrine 50% response rate?

    - Is elevated Nagalase still his hypothesis
     
    Last edited: Oct 7, 2017
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  18. Hip

    Hip Senior Member

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    Fantastic post @Jesse2233! You do indeed get the greatest information from Dr Chia.

    Yes, Dr William Weir reports that his ME/CFS patients only started seeing signs of recovery around the 3rd or 4th month on tenofovir. Although Dr Weir says that some patients had IRIS-like features during the initial three months of treatment (the IRIS-like features might be an early indication of the drug working, but I am not clear whether these features were only present in patients who later went on to get a beneficial response from tenofovir, or whether these features were also present in patients who ultimately did not benefit from this drug).

    Dr Weir's report is here:
    Weir, William RC, FRCP FRCP (Edin).

    Subject: Successful treatment of ME/CFS with antiretroviral

    I am an infectious disease physician with an interest in ME/CFS. I am retired from the UK National Health Service now but retain my interest in ME/CFS and continue to see and treat patients with this condition. I wish to report some preliminary observations.

    I have prescribed the antiretroviral, tenofovir, in the treatment of ME/CFS. I have three patients with ME/CFS who recovered whilst being given this drug. Signs of recovery did not appear until the third/fourth month. Two of them had IRIS like features during the first three months of treatment reminiscent of what I have seen in the treatment of HIV infection. I have also had to stop the tenofovir in 3 other patients in whom there was no beneficial response after 5 months. One of these was also having severe IRIS like symptoms and felt unable to carry on with the drug. In the recovered patients, I think placebo response was an unlikely explanation insofar as there was no beneficial effect until the 3rd/4th month. The occurrence of IRIS in two of them is highly suggestive to me of successful treatment of an immune-suppressing retrovirus. Could this be a HERV?

    I now have 6 other patients on tenofovir, but all are within 3 months of starting the drug, and I do not expect any beneficial effects as yet. I intend to report on these when they have completed 4 months of treatment.

    Of interest is that the apparent beneficial effects in Rituximab treated patients took a minimum of 16 weeks to appear. With the benefit of some (informed) guesswork I think that a retrovirus is the root cause of ME/CFS and that its preferred residence are CD20 cells, just as the preferred residence of HIV are CD4 cells. I am very excited by the response of the patients I have described and feel very strongly that a full double blind, randomised, controlled trial with close monitoring of immunological parameters is now warranted using antiretroviral therapy. As I am now retired I am not in a position to organise this but would be very happy to provide input based on my experience of seeing approximately 2,000 patients with ME/CFS.
     
  19. Hip

    Hip Senior Member

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    Very interesting indeed.

    Although my understanding is that the CD8 T-cells struggle to eliminate coxsackievirus B-infected cells, because coxsackievirus B uses cunning immune evasion techniques to make the cells it infects "invisible" to CD8 T-cell surveillance. CVB does this by removing the MHC-I receptors from the infected cell's surface, and this receptor is critical for normal CD8 T-cell operation. More info in this paper.
     
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  20. used_to_race

    used_to_race

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    This is interesting to me. When I first began looking into my symptoms, I thought chronic EBV infection could be my issue, and found this paper on cytotoxic T cell therapy for EBV. I ended up corresponding with one of the authors, who encouraged me to get an EBV PCR, which was negative, so I began looking elsewhere. I guess that if CVB infection is the problem, then T cell therapy could be something, but hadn't thought about it. Can anyone link me to the "T cell expansion findings of Mark Davis"?

    Another thing for ya'll to look at: I'm currently watching the Biology 3310/4310 lectures from Columbia University (Virology 101), and in lecture 5, at around the 1-hour mark, the professor (who is a poliovirus expert) mentions an antiviral drug which binds strongly to lipid receptors, blocking poliovirus from sensing a key trigger in its infectious cycle. The virus is unable to uncoat, so it can't release its genome. I looked into this because obviously poliovirus is an enterovirus, and found this paper. The drug is called Disoxaril (W55717), but I don't think anybody uses it because, as Dr. Racaniello mentions in the lecture, antiviral resistance is a big concern with this compound. Any thoughts on this?
     
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