A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
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Patterns of Recovery - Gradual Improvement vs Sudden Switch?

Discussion in 'General ME/CFS Discussion' started by Jesse2233, Dec 1, 2017.

  1. Jesse2233

    Jesse2233 Senior Member

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    I've been pouring over anecdotal recovery stories and clinical trials trying to glean insight into core etiology and understand how people recover.

    From what I've seen there are two recovery models:
    1. A slow gradual progression with setbacks and false dawns

    2. A sudden paradigm shift occurring over the course of a few days
    We can see documented examples of the first type in Dr Martin Lerner's valacyclovir responders, and examples of the second type in Drs Fluge / Mella's phase 2 major rituximab responders.

    Anecdotally responders to LDI report sudden and rapid improvement whereas responders to tenofovir seem to be over a longer term (punctuated by IRIS / herx responses). I have heard of people rapidly recovering from IVIG, or slowly improving with continual infusions over time.

    Dr Ron Davis has spoken of a metabolic switch that can be theoretically flipped supporting the first model. Integrative practitioners tend to refer a comprehensive and slow rebuilding of damaged systems (the terrain) leading to a gradual re-emergence of wellness which corresponds with model number two.

    Of course a third model that includes rapid upticks followed by long plateaus is also possible. And I would be remiss if I did not mention the statistically more common experiences of continual decline, constant fluctuation, or improvement to a plateau.

    Some initial thoughts on possible factors:
    • Degree of underlying organ damage (taking longer to heal) vs functional mito impairment that can be quickly switched

    • Presence of underlying pathogens that take time to appreciably decrease vs an aberrant immune response that can quickly be switched off

    • Toxicity levels in the body or the environment dampening recovery velocity

    • The presence and velocity of nonspecific independent disease processes simultaneously taking place in the body
    Curious to hear the thoughts and experiences of others on this topic
     
    Last edited: Dec 1, 2017
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  2. Diwi9

    Diwi9 Senior Member

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    @Jesse2233 - Above where you state "LDI", did you mean LDN? If not, what is LDI?
     
  3. Jesse2233

    Jesse2233 Senior Member

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    LDI is low dose immunotherapy. It was pioneered by Dr Ty Vincent. It involves ingesting or injecting tiny doses of an antigen (pathogen / allergen) to desensitize the immune system. Patients sometimes report sudden large improvements (or worsenings) in response.

    Here’s an interview with Dr Vincent where he explains LDI in more detail
     
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  4. stridor

    stridor Senior Member

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    My recovery was like using a ladder to climb out of a hole. And I refer to it as The Rungs in my Ladder. The biggest rungs were mB12 - Freddd´s Protocol, and the treatment of Stealth Infections.

    Everything that happened occurred whilst chelating mercury. The recovery from mercury was gradual and continued for many, many months after chelation was finished.
     
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  5. Jesse2233

    Jesse2233 Senior Member

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    How did you determine you had mercury?

    Were there inflection points in your recovery?
     
  6. lnester7

    lnester7 Seven

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    I think I am recovering, at least I am on the upswing four or the 4th time, I have had other 3 remissions, all with different things but all of them were slowly. So I start with an hour I feel normal 23 bad, then eventually 2 good 22 bad... Some days are good some days are bad... So these days I have days instead of hours that are good and acceptable. But I know I am in the upswing. Also, I am moving and overdoing like NEVER before to be honest I do not know how I am standing. But the PEM has not settled in so bad compared with all the things I am doing this days.
     
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  7. Learner1

    Learner1 Professional Patient

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    And, perhaps:
    • Degree of derangement of metabolomics/biochemical processes
    • Degree of autoimmunity
     
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  8. stridor

    stridor Senior Member

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    @Jesse2233 Mercury - I knew that I had more exposure and at a younger age than anyone I ever met. We used it on the farm to spray the orchard. We used an old sprayer for a clubhouse as kids. And I had about 25 thermometers of mercury from a ballast that the electrician gave me sitting in an open container in my bedroom.

    But I also knew that it was an equation. Mercury in vs mercury out. Was I a hoarder? Or could I hide my head in the sand and pretend that I was one of the lucky ones?

    I put off getting tested longer than any sane person would. But that was the point, I was Mad-as-a-Hatter back then with 5 admissions for Bipolar Disorder. I didn´t want to have to deal with the dental work is the bottom line.

    The recommended is a hair test. I didn´t know about that and had a challenge test. For a brief period I lost the ability to speak - I thought I was having a stroke. My response was marked enough that the ND wanted me to go somewhere else for chelation.

    Amalgam removal was a disaster. I have a blog about that time in my life if you want to know more.

    Inflection points??? Not sure what that means but amalgam removal took my thyroid and adrenal function. That was an inflection, I suppose. I had to steal my wife´s thyroid pills and swallow hydrocortisone ointment before I found a Dr who understood about Hg and the endocrine system.

    mB12 and mfolate really was the beginning of my turn around. With them I was able to return to work.

    I was diagnosed with Serrated polyposis syndrome and had my colon removed.

    Treating mycoplasma allowed my body to put the HHV-6 back into remission and that was an inflection point. But the antibiotics were rough on what was left of my intestinal tract and I was breaking out in hives 3-4 times a day. I took coconut kefir until I sensitized to coconut. I have not had a single hive in a month.

    I am 90-95% recovered. My wife was helping me to stand up in 2011 and this summer I was hiking at 9,000 feet. I no longer meet the criteria for Bipolar, CFS, Mast Cell Activation, Depression, Stage 3 renal disease and for the first time since 2011, no polyps this year.

    It is extremely hard to recover from things like Bipolar and CFS when the body and mind are poisoned by metal.
     
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  9. ljimbo423

    ljimbo423 Senior Member

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    Here's an example of somebody here at PR that started 5mg prednisone 3 times a week and recovered within a few days.

    I went into a minor flare last night, which is almost gone now. They usually last 4-5 days but I am learning to lower the dose on some on my supps I take that effect my immune system.

    Now they don't last more than a day or 2 tops. It's very clear to me that my immune system plays a very decisive role in my illness.

    However, hydro-cortisone makes me feel worse. Showing how this disease effects each of us differently to some degree.

    Jim
     
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  10. drob31

    drob31 Senior Member

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    What pathogens and antigens do they use? How do you get them?

    This is exactly what I was looking for with my thread when I said that purposely making yourself sick to feel better.
     
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  11. Jesse2233

    Jesse2233 Senior Member

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    He has a whole host of options including EBV, Candida, Lyme, Coxsackie B4, and also some more unusual antigens such as medical plastic (which apparently some can develop immune sensitivity to). You can order them from his office after a Skype consult
     
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  12. Learner1

    Learner1 Professional Patient

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    I've wondered about all that medical plastic!:rofl:
     
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  13. Wishful

    Wishful Senior Member

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    I support the 'switch' model. In my first few years I had several abrupt remissions: I'd wake up feeling totally healthy and energetic...which would last for hours. The frequency gradually reduced, and I didn't have any spontaneous remissions after the first couple of years. I did have similar abrupt remissions from treatments later. Prednisone had that effect the first two times: five days of taking it, and believing that it wasn't going to do anything, and then it was like a switch snapped on (or maybe off, depending on your perspective) and I felt healthy and energetic...until I tapered off the prednisone. Prednisone stopped working after the first two trials. Cumin seed had the same effect as prednisone, except that it has now started working again, though not as strongly. T2 (thyroid hormone) also triggered the same abrupt remission the first few times, and now works every 21 days to prevent my baseline symptoms from worsening.

    I believe the symptoms are the result of metabolic or immune cell states. Something switches the cells into an abnormal state, and there's a feedback system that maintains that altered state. Various things can switch the system back into the healthy state temporarily, but it seems to adapt to those inputs and return to the abnormal state. I think the abnormal state makes the microglial cells (maybe through their mitochondria) overly sensitive to cytokines, causing overproduction of kynurenines that cause most of the symptoms.

    The slower processes offered in the original posting just don't fit the abrupt remissions I've observed. Chronic infections, microbiome imbalances, etc, can certainly play a role in setting the conditions for the cellular switch, or can provide slightly elevated cytokine levels which the altered cell state turns into elevated kynurenines (or whatever), but they aren't the cause of ME/CFS. There are too many ways to trigger the disease, but they seem to involve elevated immune system activation. My guess is that it will turn out that we have a gene that makes our cells slightly different in some way, such as longer/shorter microtubules, a protein with a slight alteration, or some such thing.
     
  14. andyguitar

    andyguitar Senior Member

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    One thing that needs to be considered, when comparing recover times, is that although symptoms may be similar that does not mean everybody has the same illness.
     
  15. BadBadBear

    BadBadBear Senior Member

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    I have days here and there where I wake up feeling like all cylinders are firing, and definitely some metabolic switch has been thrown on. Then something inside breaks and its back to being sick. There are also long trajectories of trending better and worse.

    This Feb. I switched from great (80% functional) to very sick (30%) in the course of a day. Before I got sick again I had almost convinced myself that I didn't have CFS. Trying to recover from that moment of forgetting about pacing and overdoing it (literally 1minute) has been a long, gradual arc toward regaining function. I seem to be stuck at 40% or so.
     

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