Dufresne
almost there...
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- 1,039
- Location
- Laurentians, Quebec
My experience and experimentation over the last few years has led me to a theory of ME/CFS I can't at the moment prove, and yet can't shake. Truthfully, I've been obsessed with it for the last year. Apparently to the extent I've begun delivering lectures in my sleep. I'd originally intended to write a detailed account of how I'd come to suspect this certain treatment to be integral to recovery, but have since decided to keep my anecdotals to a minimum. A methodical explanation is redundant. I believe the result of two severely afflicted PWC's recovering speaks for itself. However, I'd like to give some reasoning as to why this treatment might work. Of course this is all just my belief, and I may be wrong, so I apologize in advance for presenting it as if I actually understand the minutia of this puzzling condition and how it all fits together. Also, it's too bothersome to continually write "I believe", "maybe", "perhaps". So that said, here's what I think.
Cytokines are responsible for low energy
Our cellular energy problem is the result of immune activation. Cytokines are perpetuating the disease by creating excitotoxicity (ET) which burns through cellular antioxidents and deprives us of our ability to handle the byproducts of normal energy production. This is what's causing the oxygen toxicity Dr. Cheney is gauging with his Echo Terrain Mapping (ETM). He also uses ETM to measure universal toxicity among PWC's to a number of supplements. The same supplements that worsen ET in myself: MB12, CoQ10, GSH, vitamin D, fructose, etc. Symptoms of an excited state are very common if not universal in this disease, but why not everybody experiences this worsening of ET when these supplements are taken is beyond me; though I, too, went years without it. What I experience after a dose (if taken while well rested) is a state of excitement that's not at all unpleasant, but does lead to a worsening of symptoms the following day. If it's continued the negative effects take over completely and get progressively worse.
Wormwood, however, counters this and increases tolerance to the ET substances. It also, when taken for several days, greatly reduces all my symptoms:
electrical sensitivity (ES)
fasciculations (muscle twitching) in the arms and legs
post-exertional malaise (increased threshold)
cerebral hypoperfusion and cognitive symptoms
feeling wired
nasal congestion
sweaty palms
"housekeeping" symptoms; GI problems (P 450 decoupling), sore tendons (hyaluronic acid deficiency), and depleted looking muscles (inability to convert to glycogen).
This corresponds to Cheney's finding a 50% increase in superoxide dismutase among PWC's receiving Artesunate (a wormwood derivative) for three days. And judging from the rapidity of improvement and diversity of cells affected I believe the mode of action here to be as an immunomodulator, not an antiviral. This is not to say there's no boogy man pathogen. I believe there is a complicit intracellular, perhaps several, pulling strings, but the idea it's physically messing with mitochondria in every affected cell is far fetched.
LPS's role in the storm
"Ive always noticed that abstaining from food is helpful for me for short periods. On the converse many ME/CFS patients experience a considerable letdown 10 minutes or so after they eat. It seems that food does make a difference but this is occurring long before, one would think, food reaches the gut. Do you have any idea whats going on here?" -from Cort's interview with Dr. Logan
Another intervention that's been successful in relieving symptoms is fasting for three days -that number three again. In fact this works even more impressively on symptoms than wormwood, but leaves the low energy pretty much unchanged. Symptoms then return within 10 minutes of eating, regardless what. Surely food is still in the stomach, as Cort points out, while this is happening. Somehow the mere act of eating triggers an immune response. Two symptoms that arise in this way and I find especially curious are electrical sensitivity (ES) and fasciculations, both fairly common in ME/CFS. Manmade EMF is ubiquitous outside and inside the body, yet the sensitivity occurs only after the immune reaction following a meal. It's manifestations are systemic, in my case: burning/swollen eyes, skin irritation, a worsening of cognitive problems, arhythmia, and at its worst the inability to sleep. What strikes me here is the diversity of cells affected; it shares the same all-pervasive quality as the energy problem. Fasciculations are curious in that nerves firing out of control seems to indicate ET. Also the twitching is greatly exacerbated with mental exertion (as is ES) and Cheney's PWC-toxic supplements. Furthermore fasciculations can be completely stopped with a good dose of GBL (think bioactive Xyrem) which acts as a GABA receptor agonist, like benzodiazepine, at calming neurons.
Seeing as all my symptoms appear to be the result of this reaction to eating, why not excitotoxicity? What if ET/oxygen toxicity (Cheney's control point) is the result of, or dependent on, a cytokine mini-storm caused by LPS leaking into the bloodstream, triggered by the act of eating? This being what leads to the redox shift which enables intracellulars to thrive; cleverly evolved bugs that have developed a method of compromising our systems to ensure their survival. And what better or more immediate target for the old TH2 dominant trick than the trillions of intestinal flora? According to Cheney oxygen toxicity is universal in our population. According to the DeMeirleir and Maes studies bacterial sensitization is universal. What I know to be the case is either excitotoxicity causes a leaky gut, or leaky gut causes excitotoxicity. I admit there's a chicken or the egg problem here, but since my symptoms indicative of ET follow eating, I'm betting on the latter.
TPN as treatment
Total Parenteral Nutrition (TPN) is intravenous feeding. I think a period of this along with immunotherapy is the key to treating this condition. It would work on two fronts. Firstly, we'd be calming the immune system, just like fasting did. Only now we'd be fueling cells which would replenish and recycle antioxidents in the absence of the costly cytokine storm; thereby normalizing energy and redox, and enabling us to control intracellulars. The second front, and just as important, is the gut. Even after six weeks of wormwood, with an improved redox status, and a 75% improvement of all symptoms I returned to the pre-wormwood state within a few days of discontinuing the herb. And no amount of gut modification made any difference. I believe the reason for this is the system is still sensitized to good and bad bacteria in the gut, and the bad bacteria likely has an ongoing aggravating effect on mucosa that hinders recovery. Complete relief from the antigen, in the case of good bacteria, will weaken the immune response. TPN would accomplish this. Some bad bacteria cannot be eradicated while being fed, just as one can't effectively manage candida on a diet of Toblerone. Sulfate Reducing Bacteria are an example of this. Starvation along with immunotherapy is the only way to control these guys. Another bonus is that gut health mirrors the health of the entire system, so while you're normalizing cellular energy you enable the changes in the gut to take place.
However, the proof may be in the pudding. The following recovery stories share similarities I believe critical to success in treating this disease.
http://aboutmecfs.org/Story/MECFSRecovery.aspx
http://www.noeticholdings.com/ken/
What are the odds of two individuals suffering severe ME/CFS, coming to the point of starvation, receiving IV nutrition/TPN, some immunotherapy, and recovering, a meaningless coincidence? Calculate the odds of: the near zero recovery rate of this degree of CFS after several years, factor in the perverted notion of sick people starving themselves, and cross that with the extreme rarity of a therapy few outside those suffering the worst forms of Inflammatory Bowel Disease are likely to ever see. To my mind it's worth a try. Though I'd throw in some GcMAF, Enzyme Potentiated Desensitization, and eventually copious and assorted probiotics, too.
Two interesting points:
-According to Dr. Cheney autism is an oxygen toxic disease as well. It's also a leaky gut disease.
-The Norwegian B Cell depletion discovery is compatible as it would pretty much cripple humoral immunity's soldiers (B Cells), weakening the response to LPS, and thereby strengthening energy and redox. Of course when the cells come back they bring their old habits with them. As long as the antigen is still around the immunological flare will ensue.
Cytokines are responsible for low energy
Our cellular energy problem is the result of immune activation. Cytokines are perpetuating the disease by creating excitotoxicity (ET) which burns through cellular antioxidents and deprives us of our ability to handle the byproducts of normal energy production. This is what's causing the oxygen toxicity Dr. Cheney is gauging with his Echo Terrain Mapping (ETM). He also uses ETM to measure universal toxicity among PWC's to a number of supplements. The same supplements that worsen ET in myself: MB12, CoQ10, GSH, vitamin D, fructose, etc. Symptoms of an excited state are very common if not universal in this disease, but why not everybody experiences this worsening of ET when these supplements are taken is beyond me; though I, too, went years without it. What I experience after a dose (if taken while well rested) is a state of excitement that's not at all unpleasant, but does lead to a worsening of symptoms the following day. If it's continued the negative effects take over completely and get progressively worse.
Wormwood, however, counters this and increases tolerance to the ET substances. It also, when taken for several days, greatly reduces all my symptoms:
electrical sensitivity (ES)
fasciculations (muscle twitching) in the arms and legs
post-exertional malaise (increased threshold)
cerebral hypoperfusion and cognitive symptoms
feeling wired
nasal congestion
sweaty palms
"housekeeping" symptoms; GI problems (P 450 decoupling), sore tendons (hyaluronic acid deficiency), and depleted looking muscles (inability to convert to glycogen).
This corresponds to Cheney's finding a 50% increase in superoxide dismutase among PWC's receiving Artesunate (a wormwood derivative) for three days. And judging from the rapidity of improvement and diversity of cells affected I believe the mode of action here to be as an immunomodulator, not an antiviral. This is not to say there's no boogy man pathogen. I believe there is a complicit intracellular, perhaps several, pulling strings, but the idea it's physically messing with mitochondria in every affected cell is far fetched.
LPS's role in the storm
"Ive always noticed that abstaining from food is helpful for me for short periods. On the converse many ME/CFS patients experience a considerable letdown 10 minutes or so after they eat. It seems that food does make a difference but this is occurring long before, one would think, food reaches the gut. Do you have any idea whats going on here?" -from Cort's interview with Dr. Logan
Another intervention that's been successful in relieving symptoms is fasting for three days -that number three again. In fact this works even more impressively on symptoms than wormwood, but leaves the low energy pretty much unchanged. Symptoms then return within 10 minutes of eating, regardless what. Surely food is still in the stomach, as Cort points out, while this is happening. Somehow the mere act of eating triggers an immune response. Two symptoms that arise in this way and I find especially curious are electrical sensitivity (ES) and fasciculations, both fairly common in ME/CFS. Manmade EMF is ubiquitous outside and inside the body, yet the sensitivity occurs only after the immune reaction following a meal. It's manifestations are systemic, in my case: burning/swollen eyes, skin irritation, a worsening of cognitive problems, arhythmia, and at its worst the inability to sleep. What strikes me here is the diversity of cells affected; it shares the same all-pervasive quality as the energy problem. Fasciculations are curious in that nerves firing out of control seems to indicate ET. Also the twitching is greatly exacerbated with mental exertion (as is ES) and Cheney's PWC-toxic supplements. Furthermore fasciculations can be completely stopped with a good dose of GBL (think bioactive Xyrem) which acts as a GABA receptor agonist, like benzodiazepine, at calming neurons.
Seeing as all my symptoms appear to be the result of this reaction to eating, why not excitotoxicity? What if ET/oxygen toxicity (Cheney's control point) is the result of, or dependent on, a cytokine mini-storm caused by LPS leaking into the bloodstream, triggered by the act of eating? This being what leads to the redox shift which enables intracellulars to thrive; cleverly evolved bugs that have developed a method of compromising our systems to ensure their survival. And what better or more immediate target for the old TH2 dominant trick than the trillions of intestinal flora? According to Cheney oxygen toxicity is universal in our population. According to the DeMeirleir and Maes studies bacterial sensitization is universal. What I know to be the case is either excitotoxicity causes a leaky gut, or leaky gut causes excitotoxicity. I admit there's a chicken or the egg problem here, but since my symptoms indicative of ET follow eating, I'm betting on the latter.
TPN as treatment
Total Parenteral Nutrition (TPN) is intravenous feeding. I think a period of this along with immunotherapy is the key to treating this condition. It would work on two fronts. Firstly, we'd be calming the immune system, just like fasting did. Only now we'd be fueling cells which would replenish and recycle antioxidents in the absence of the costly cytokine storm; thereby normalizing energy and redox, and enabling us to control intracellulars. The second front, and just as important, is the gut. Even after six weeks of wormwood, with an improved redox status, and a 75% improvement of all symptoms I returned to the pre-wormwood state within a few days of discontinuing the herb. And no amount of gut modification made any difference. I believe the reason for this is the system is still sensitized to good and bad bacteria in the gut, and the bad bacteria likely has an ongoing aggravating effect on mucosa that hinders recovery. Complete relief from the antigen, in the case of good bacteria, will weaken the immune response. TPN would accomplish this. Some bad bacteria cannot be eradicated while being fed, just as one can't effectively manage candida on a diet of Toblerone. Sulfate Reducing Bacteria are an example of this. Starvation along with immunotherapy is the only way to control these guys. Another bonus is that gut health mirrors the health of the entire system, so while you're normalizing cellular energy you enable the changes in the gut to take place.
However, the proof may be in the pudding. The following recovery stories share similarities I believe critical to success in treating this disease.
http://aboutmecfs.org/Story/MECFSRecovery.aspx
http://www.noeticholdings.com/ken/
What are the odds of two individuals suffering severe ME/CFS, coming to the point of starvation, receiving IV nutrition/TPN, some immunotherapy, and recovering, a meaningless coincidence? Calculate the odds of: the near zero recovery rate of this degree of CFS after several years, factor in the perverted notion of sick people starving themselves, and cross that with the extreme rarity of a therapy few outside those suffering the worst forms of Inflammatory Bowel Disease are likely to ever see. To my mind it's worth a try. Though I'd throw in some GcMAF, Enzyme Potentiated Desensitization, and eventually copious and assorted probiotics, too.
Two interesting points:
-According to Dr. Cheney autism is an oxygen toxic disease as well. It's also a leaky gut disease.
-The Norwegian B Cell depletion discovery is compatible as it would pretty much cripple humoral immunity's soldiers (B Cells), weakening the response to LPS, and thereby strengthening energy and redox. Of course when the cells come back they bring their old habits with them. As long as the antigen is still around the immunological flare will ensue.