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Newly Diagnosed CFS/ME - Need Advice on Caregivers and Treatment Protocol

Discussion in 'General ME/CFS Discussion' started by Jesse2233, Feb 8, 2017.

  1. Jesse2233

    Jesse2233 Senior Member

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    Southern California
    Hi everyone,

    First off thank you to everyone for the support and advice you've provided me so far. This is a special place and I'm glad I found you all.

    I have some questions about properly educating my caregivers and deciding on a treatment protocol.


    Questions

    1. Is there a recommended book / PDF I could provide to my caregivers to help them understand assiting someone with this condition?

    2. Does the protocol below seem like a reasonable first approach or should I try something like @Freddd's protocol instead?

    3. Should I ask Dr Enlander for a Hepapressin mix without the folic acid and glutathione to help guard against a crash?


    My goals are to stop any worsening of my symptoms and of course to move toward recovery.

    The rationale of my protocol is to attack things from both the immunomodulating and anti-viral perspectives. I'm also including various symptomatic supplements like @Hip 's anti-anxiety combo.

    Let me know if you think I risk a major crash with any of these, or if they'll interact negatively.


    Doctors:

    - Working with Dr Enlander over phone / email, a local MD / ND, and ad hoc specialists.

    - Have an appointment with Dr Chia in May.


    Proposed protocol:

    - Pacing, aggressive resting, gentle stretching, acupuncture, heart rate / oximeter monitoring

    - Hepapressin (or Nexavir), Gear Up, Catapult, GMAF, Electrolytes

    - Equilibriant, Neem, DHQ, *Selenium, *Monolaurin, *raw garlic

    - *Methylated B-Complex, *Liposomal Vitamin C, *Liposomal Gluthathione, *Vitamin D

    -NAG, Tumeric, Flaxseed oil

    *already taking

    If I don't see improvement within a year I'm going to pursue plasmopheris and Rituximab at OMI


    Viral load:

    - High Coaxsackie B4
    - Moderate IgGs for EBV, HHV-6 and Chlamydia pneumoniae

    No current test results indicating other conditions such as autoimmune or thyroid problems


    Background:

    I'm a 30 year old man in Los Angeles. Following an acute viral illness and after being ill with classic ME symptoms (PEM, weakness, disturbed sleep etc) at a 3.5 functionality for 2.5 months I was diagnosed by Dr Enlander (over phone) with CFS/ME. Still getting used to this reality.

    Thank you!!
     
    Last edited: Feb 8, 2017
    *GG*, erin and sarah darwins like this.
  2. Hip

    Hip Senior Member

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    Did you get that coxsackievirus B test at ARUP lab?


    If you try oxymatrine, you'd want to follow Dr Chia's instructions on how to take it, which you will find if you search this forum (basically, start slowly with one tablet at day, and work up); and be aware that if oxymatrine works for you, you can feel worse before you get better.
     
  3. Jesse2233

    Jesse2233 Senior Member

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    Thanks Hip, I will keep that in mind

    Yes, the coxsackie B test was conducted by ARUP under the directions of Chia

    Anything else you'd recommend from a CB4 antiviral perspective?
     
  4. Hip

    Hip Senior Member

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    Do you know what titers you had in the ARUP test? Dr Chia considers titers of 1:320 and higher to be evidence of an active infection.



    You can consider the supplement androstenetriol (AET), though this seems to be more protective against tissue damage caused by acute CVB4, rather than directly antiviral.

    I tried it myself, but unfortunately had to stop due to possible neuropsychological side effects (which I am usually susceptible to).
     

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