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I cannot speak to what Acheson was referring to, but I can tell you that neurologists have a whole category of illness called Periodic Paralsys which in most of its patients does not refer to paralysis most of the time, but instead can be characterized by permanent muscle weakness that...

@Jonathan Edwards, relative to your two bolded items, I have to disagree. Paresis doesn't only refer to paralysis, it also refers to a more or less permanent muscle weakness, which I have seen many pwME describe. Individuals with periodic paralysis - also characterized USUALLY with PMW or...

I'd like all ME/CFS research going forward to have better screening mechanisms integrated into their processes. I fear too many conditions and pathogens are slipping by when they are discreet and should be excluded as such. For instance, how are not channelopathies routinely checked for as best...

What's my point? This. So why confine the parameters of exploring for answers to convention? I think we need to be looking for enteroviruses and other pathogens where we don't normally and by using means that are not restricted to standard interpretation. I think we will find few answers via...

"...off to the races..." Not sure I'm all that comfortable with the gambling metaphor.

Yes, no easy answers with ME/CFS, so the "why" component is pretty much uncharted territory. But a short answer might be that the immune system senses the antigen, regardless of whether it is an exogenous pathogen or not. I am not sure if enteroviruses fit the bill. How's that been working for...

Why? This would be an infection that is built to survive long-term, not kill. Why then would the infected organ necessarily appear diseased by typical or conventional standards? Such standards don't seem to apply to most other normal overt metrics, e.g. fever, for pwME.

Not sure Lipkin looked at tissue. As I recall he looked at plasma and CSF, and he drew a blank for enteroviruses and EBV and HV6 and Borrelia - which is somewhat counterintuitive. One needs to look at tissue for some of these infections, if you go by experts in those respective pathogens.

The best book I have read is "Cure Unknown" by Pam Weintraub. But it's a book, not a study. I can direct you to specific studies - like the internal effort to replace the CDC 2 Tier with the C6, which the UK bought into - but these are very very specific, and there are so very many of them. I...

I do not remember much about MCAS, but I know one of my ME/CFS doctors looked for it and had a handful of tests run to check for it. I do not know if they are standard or generally accepted as valid for this purpose. The tests were: 1) An ELISA that measures IgG antibodies specific for IgE...

From the frying pan into the fire.

This is somewhat similar to the path I took relative to ME/CFS and Lyme. I am oversimplifying a bit for the sake of narrative, but I got a bull's-eye rash. I knew what it was immediately. I had never had Lyme at the point, but I felt I could ride it out and let it resolve on its own, especially...

Swollen knees are the foundation upon which much of the concept of chronic lyme was built, unfortunately. To this day, Steere or one of his disciples struggles to demonstrate a cause for swollen knees post abx. HLA genes, molecular mimicry,non viable borrelia debris - all and more have been used...

@Woolie, I think the reservations you and others have are that you think the science pretty much eschews the concept of chronic or persistent Lyme following antibiotics. I get the sense @Jonathan Edwards feels the same, although of course I could be wrong. You believe people are suffering, but...

@Woolie, yes, on paper, there are supposedly symptoms specific to chronic Lyme. The chief one would be swollen knees (yuck - steriotypical Steere's disease). There is another one, but I can't think of it at the moment. (The Bulls-eye rash.)Conversely, ME/CFS has PEM, which supposedly Lyme does...

I'm not sure this agrees with my takeaway from the article. But the short answer is I'm not sure what connection this has to do with mold. But I'm not sure of a lot. That is not quite accurate. Late stage neuroborreliosis looks quite similar to neuro-syphilis. Somewhere here today I posted a...

@NelliePledge , there are a couple reasons for testing. There are more against it, I suppose, according to some. Were it me, I'd get tested. I am not a medical doctor, of course, this is simply my opinion. It's not a function of so-called chronic Lyme. It's late stage Lyme you may need to be...

Not so fast. I have repeatedly tested with mild brain atrophy on MRI's, but have to fight regularly for disability. I suppose it's a function of degree, but when it's your brain, well... I wonder a lot if other pwME have some sort of brain atrophy, or if it is even looked for. I think it...

Not too many of the people that populate forums such as this one.

Yes, dysautonmia ties in with MCAS. Lyme, too. Borrelia is even mentioned as a direct cause of MCAS, as the hufpo article below alludes to. Incidentally, this article also gives a fairly decent overview of MCAS. So many of these frequently are connected...