Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
Discuss the article on the Forums.

Flipping the switch...how can we do it?

Discussion in 'General Treatment' started by AdamS, Mar 29, 2017.

  1. AdamS

    AdamS Senior Member

    Messages:
    260
    Likes:
    752
    With all these breakthroughs recently related to the Citric Acid cycle etc, there must be a way to flip the switch back. I don't know about anyone else but i'm pretty desperate and will try anything because living this way just isn't worth it.

    The reason I talk about flipping the switch is because i've experienced it myself, a few times in the past before I knew what M.E (International criteria) was I had 3-4 episodes where it felt like all the energy from every cell in my body had been removed in the space of 60 seconds, (often but not always during exertion) only to return and spontaneously recover after 30-45 minutes or so of rest/eating carbs and not happening again for months.

    Whatever has been shut down must be able to be turned back on surely. I know this is the question that everyone is trying to answer but we're getting close and I can't help but think the answer could be right beneath our noses. What is it that Staphypan/Rituximab for example have in common that helped people? I'm not too technical myself but I know there are people on this forum who can help us get closer to the answer.

    P.S I'm not interested in people pointing out the obvious like 'that's what the scientists are doing, leave it to them' I know that, but even waiting 3-5 years for a cure seems incredibly hard right now.
     
    Last edited: Mar 29, 2017
    Navid and starlighter like this.
  2. caledonia

    caledonia

    Messages:
    4,203
    Likes:
    3,223
    Cincinnati, OH, USA
    The angle I'm working on is removing the mercury and arsenic which are inhibiting pyruvate dehydrogenase and the citric acid cycle. I'm using the Cutler frequent dose chelation protocol, which is the only type of chelation I suggest doing.

    https://www.ncbi.nlm.nih.gov/books/NBK22340/

    See my signature link for more info on the Cutler protocol.
     
    AdamS likes this.
  3. AdamS

    AdamS Senior Member

    Messages:
    260
    Likes:
    752
    Hi, thanks for the reply, interesting angle too, i'll have a read now. Have you had any luck/improvements so far?
     
  4. Mohawk1995

    Mohawk1995 Senior Member

    Messages:
    239
    Likes:
    483
    Having experienced observing my son go through the nightmare of ME/CFS for 5 years, then seeing him make a dramatic improvement over the past 3 years I have some thoughts. Also, being a Physical Therapist for over 30 years I have had the opportunity to work with huge variety of patients and conditions as well be able to learn from the experts in my field. Based on that, I was intrigued by the title of your post and would agree that turning the switch on (or off in my thinking) is key.

    Our son was treated with both infusion and oral Antivirals and had a dramatic improvement in the 12 weeks he received that. He was not 100% recovered at the end of treatment (which he feels he is currently), but he was able to start the process of regaining his ability to function and "rehab" himself over the course of the next 2-3 years. Immediately following his treatment I said word for word "something with his treatment flipped a switch". I do not believe it had to be the Antivirals necessarily, but I do believe it was the Antiviral treatment that changed his physiology.

    Interestingly enough, all of his struggles occurred at a time when I professionally was gaining a greater interest in Neuroscience and Neurophysiology through the latest research and clinical findings in the areas of Stroke, Concussion, Head Injury, Neuro-inflamatory agents, Neuro-plasticity and Neuro-protective/Neuro-immune responses. I listened to speakers talk about the Penumbra neurophysiological phenomenon associated with Stroke, I heard and read about Post-concussive patients being successfully treated with Amantadine (Antiviral), I read research on Pain and Chronic Pain and the Bio-molecular Physiology of Pain and listened to the experts in the fields on functional Neuroscience discuss threat responses and immune responses associated with Pain, Fibromyalgia, Concussions, Hemiplegic Migraines and more. I also worked in a 25 bed observation unit seeing many patients come in with Pain issues, stroke like symptoms, vertigo, brain fog, unexplained fatigue, unexplained nausea, autonomic responses of undetermined origin and more.

    I say all of this, not to "toot my own horn", but just to get an understanding of the background to my thoughts on ME/CFS. First off, I am 100% confident that ME is physiological. I was 100% confident of this prior to any of the recent research proving it so. Secondly, I am very confident that at its root ME is a Neurophysiological phenomenon in which the protective mechanisms of the Nervous system are activated by any of a number of "threats". This include viral, bacterial, fungal or tick-borne infections, Severe Trauma, severe reactions to medications, severe allergic reactions, severe levels of stress or any other significant condition or event. Why some people develop it and others don't, I have no clue but probably some Genetic component as well as some Neurophysiological predisposition.

    The problem as I see it, is that this protective response which can be normal (Cell Danger Response for instance) comes on too strong and/or stays on too long. With the resulting slow down of metabolism, increased Neuro-Inflamatory activity, increased sensitivity to other threats and the downward spiral or cascade of physiological events, the result is Severe Fatigue, intolerance to exertion, Brain fog, pain, weakness, changes in biochemistry related to metabolism and Neuro-inflamation, unusual neurological symptoms of all variety and potential intolerance to any stimuli if the disease is severe or chronic enough.

    What does it take to turn this off? I believe there has to be enough reserve built or enough relief on the body systems so the protective response is shut off. In the case of my son, the Antivirals allowed for that. Was it because he had an active and chronic viral infection? I could not say. Was it related to the viral like onset? Possibly. Could he have gotten to that point by another route? Quite possibly.

    So yes, I do think the mechanism is beneath our noses, but not so easy to see with our standard tools of investigation. The work at Stanford and Norway as well as the clinicians working all over the world supports this approach to it. I have yet to see anything (although I am admittedly biased) on this sight or in the research that contradicts this line of thinking. I actually feel that this line of thinking is more inclusive than other more "Disease" focused approaches. The good news that I am seeing as of late, is that the research being done is getting us closer to finding a clinical solution for this. Ultimately, I believe that will be a systems approach with Interdisciplinary teams providing treatment that is ultimately aimed at shutting this switch off and restoring function.

    Thank you for raising the question as you did. It is a very important one indeed.
     
    GreyOwl, Johnskip, Webdog and 2 others like this.
  5. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,593
    Likes:
    3,962
    Southern California
  6. AdamS

    AdamS Senior Member

    Messages:
    260
    Likes:
    752
    Wow, what a fascinating story and response. Thanks so much for taking the time to share it. The idea of a protective response certainly seems plausible and what you say about giving the body enough relief or reserve to recover/reverse the damage seems to fit well with some of the recovery stories i've read where people paced carefully for a long period, this one in particular stands out:

    http://people.bath.ac.uk/ac886/cfs/

    May I ask which antivirals your son benefitted from and was he tested for certain levels of these viruses first? In the UK we seem to be about 10 years out of date and don't think antivirals are an option.
     
  7. caledonia

    caledonia

    Messages:
    4,203
    Likes:
    3,223
    Cincinnati, OH, USA
    I'm not very far into chelation, but I did have a lot of improvements a year and a half after getting my last mercury amalgams out. My autoimmune thyroiditis went away, my gut cleared from candida. Probably some other things I'm forgetting.

    With chelation, I've gotten some windows where music sounds really wonderful and meaningful like it used to.

    Edited to add: I'm also getting some clearing of fungal toenails.
     
    Last edited: Mar 29, 2017
    AdamS likes this.
  8. ljimbo423

    ljimbo423 Senior Member

    Messages:
    480
    Likes:
    725
    United States, New Hampshire
    I think the "switch" as I understand it, is oxidative stress. In my case the oxidative stress is being caused by severe dysbiosis, causing a leaky gut and lipopolysaccharides (LPS) to leak into my bloodstream, causing an immune system reaction.

    The immune system causes a significant amount of oxidative stress, trying to kill off a perceived threat, (ie.LPS) from bacteria in the gut. LPS also cause neuro-inflammation, which can cause a host of symptoms. Immune system modulation, from antivirals or Rituximib etc. could reduce the oxidative stress and improve symptoms. There might be other ways that antivirals work too, I don't know.

    I am making very good progress in treating dysbiosis. My fatigue is much less than it was and my PEM has also improved quite a bit.
    For the first time in years, I actually up in the morning, make breakfast, eat, shave, brush my teeth, make my bed, shower, and do a couple other odds and ends, every day by noontime or before!:)

    As @caledonia said above though, heavy metals can also cause a high level of oxidative stress and impair enzymes like pyruvate dehydrogenase and many other enzymes as well. It's my understanding that oxidative stress, can impair many, many enzymes throughout the body, causing all kinds of problems and dysfunctions.
     
    AdamS likes this.
  9. TigerLilea

    TigerLilea Senior Member

    Messages:
    1,136
    Likes:
    3,404
    Vancouver, British Columbia
    I can't help but wonder whether this will turn out to be a problem with the gut microbiome.
     
    lcnewross, ljimbo423 and AdamS like this.
  10. Mohawk1995

    Mohawk1995 Senior Member

    Messages:
    239
    Likes:
    483
    Interestingly he saw Dr Lerner and tested high for antibodies to HHV-6 initially, but later also tested high in EBV. We have not repeated the same tests since he has been recovered/in remission.

    Our son received Infusions with Cidofovir and orally took Valcyte during the 12 week treatment phase. 6 total infusions over that period every two weeks. Again, what made me question whether it was actually the antiviral impact on a virus or if there was something else impacted is the fact that an antiviral was effective in treating Post Concussive Syndrome which is not viral induced, but highly neuro-inflamatory. If antivirals impact ME through an alternate pathway, then what pathway is that? That is a question for someone far smarter than I in biomolecular physiology.
     

See more popular forum discussions.

Share This Page