Dr.Patient
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Posted elsewhere, but here now for putting it together:
I think the core problem is acute or chronic mitochondrial dysfunction, citric acid cycle, etc hence the inability to produce energy.
The neurological part exists in all patients, if not cognitively, definitely in theautonomic nervous system, as seen by orthostatic intolerance. I don't think it is a primary central or peripheral nervous system problem.
When I have a good day, my gut is fine. On bad days, the gut starts acting up, with constipation. I still have no strength to digest chicken. The gut problems I attribute to low energy and autonomic dysfunction. I haven't messed around with gut microbes, etc, because I believe that microbes here are not the problem.
The immune part comes in in that a lot of these are caused by flu viruses that hit and run, something deranged with the immune system. The damage is already done. There is nothing great that immune modulators can do, as seen by the lack of consistent response to rituxan, for eg.
It is also not a persistent bacterial or Lyme either, hence the failure of antibiotics. Antiviral drugs help, by suppressing herpes and other viruses, since infection and relapses of viruses themselves can cause fatigue even in those without cfs.
There is no primary inflammation problem. Hence, the lack of response to anti inflammatory drugs.
For some reason, aggressive resting is the only thing that works (except in the really "gone" cases) somewhat, to some extent.
Until we crack this exertion-PEM link, there is no real treatment for this condition.
I'd like to call it Mitochondrial Neuro Immune Disease to reflect the components that are affected.
I have understood this illness as a physician, and feel it and live it everyday as a patient.
That's why I stuck to just rest and antiviral, other than other drugs for symptoms.
Now, the factor of Time comes in. Some people have gotten better after a decade, so that's what I'm hoping for.
If I weren't a physician, I would have probably tried all the treatments that people do.
I cannot imagine how I would have dealt with this illness if I hadn't had the medical knowledge and understanding and judgement.
I think the core problem is acute or chronic mitochondrial dysfunction, citric acid cycle, etc hence the inability to produce energy.
The neurological part exists in all patients, if not cognitively, definitely in theautonomic nervous system, as seen by orthostatic intolerance. I don't think it is a primary central or peripheral nervous system problem.
When I have a good day, my gut is fine. On bad days, the gut starts acting up, with constipation. I still have no strength to digest chicken. The gut problems I attribute to low energy and autonomic dysfunction. I haven't messed around with gut microbes, etc, because I believe that microbes here are not the problem.
The immune part comes in in that a lot of these are caused by flu viruses that hit and run, something deranged with the immune system. The damage is already done. There is nothing great that immune modulators can do, as seen by the lack of consistent response to rituxan, for eg.
It is also not a persistent bacterial or Lyme either, hence the failure of antibiotics. Antiviral drugs help, by suppressing herpes and other viruses, since infection and relapses of viruses themselves can cause fatigue even in those without cfs.
There is no primary inflammation problem. Hence, the lack of response to anti inflammatory drugs.
For some reason, aggressive resting is the only thing that works (except in the really "gone" cases) somewhat, to some extent.
Until we crack this exertion-PEM link, there is no real treatment for this condition.
I'd like to call it Mitochondrial Neuro Immune Disease to reflect the components that are affected.
I have understood this illness as a physician, and feel it and live it everyday as a patient.
That's why I stuck to just rest and antiviral, other than other drugs for symptoms.
Now, the factor of Time comes in. Some people have gotten better after a decade, so that's what I'm hoping for.
If I weren't a physician, I would have probably tried all the treatments that people do.
I cannot imagine how I would have dealt with this illness if I hadn't had the medical knowledge and understanding and judgement.
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