What can you do about “Chronic Lyme” as now confirmed to be post-sepsis syndrome?

November 13, 2018

So, now that we have been proven right all along, that Lyme is really post-sepsis syndrome (as is ME/CFS) with tolerance to all sorts of antigens (means if you hit it with abx or anti-virals they will just grow back),
https://www.nature.com/articles/s41598-018-34393-9
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people are coming out of the woodwork asking us what they can do about this. Well, Google Post-Sepsis Syndrome and also use pubmed to see what are the “palliative care” recommendations. I also have an group here called “Post Sepsis HEALING (not cure)”
https://www.facebook.com/groups/1019271081455429/
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which has to do with ***the science that says exercise helps you produce human growth hormone and that the “reconditioning” recommendation given for hospital-acquired post-sepsis victims is the same.*** You have to make your heart stronger and grow more red blood cells.
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There are *no* other topics in that group up for discussion unless you have some scientific, published substantiation for your whatever claims that [“such and such”] helps post-sepsis syndrome. But do not just make unsubstantiated, selfie-experience claims. That is not how science works. We require the crooks to hold to the standard of scientific validation and the Scientific Method, and we hold ourselves to the same standard.
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Post-sepsis syndrome is DAMAGE to tissues and organs, as shown here by Allen Steere in 1988 so PLEASE look at this carefully, as it validates your misery:
http://www.actionlyme.org/clinical-pathologic-correlations-of-lyme-disease-by-stage-Steere-Duray.pdf
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I am asking people to have a little sympathy for the TruthCures.org campaigners and bloggers because we have this exact disease, too. Or else we would not be interested.

I have to say that because it’s logical,… which means people would not not have thunk that up for themselves. 😦 Kindly put yourselves in our position.

If the time comes that we become a non-profit, we will be recruiting new, young doctors whose reputations have not been damaged by the greed of malpractice-treating Lyme sepsis as if it is curable with antibiotics (never known to be, officially, since the late 1980s by the IDSA – and the CDC!! – and confirmed recently by Chiu et al).

It has taken us 15-20 years to come this far, and thanks to a Finnish Group (not American, not English, not French, not German thank you all very little), we were proven right, but we’re *ALL* still left with no help except ourselves.

If a doctor were to use the right diagnosis codes for post-sepsis syndrome, you probably could get all kinds of care paid for by insurance companies as well as disability income, *** but we have no doctors we know of who we can refer you to, since they ALL fought against us, the whole time.***

There is no “MD” in America who has formally come forward and explained the post-sepsis outcome of Lyme or that is ME/CFS, technically or scientifically. Even Donald Marks, who said LYMErix caused a disease like late neuro Lyme, thought this was autoimmune. It’s not. Not for the 85% of us with a chronic fatiguing (understatement) outcome with the medical delirium (not a “mental illness” of the DSM sort, but organic and scientifically real), or dementia and musculoskeletal signs.

Not a single one. In the whole country. Not anyone who works for the HHS.gov, none that works in academia, NOWHERE.

Pretty famous data point. Perhaps more famous than the fact that LYMErix caused the same post-sepsis disease as Lyme. We should give out STUPID awards and force them *all* to wear them.

Or maybe we’ll go to the Senate and get a law passed that says all MDs must have an undergraduate degree in biochemistry. This is too many years and too much misery as a result of their incompetence and most of all WILLFUL neglect since ****all they had to do was look.****

Ask.

‘Make a MINIMUM effort to what is behind the 28 years of “controversy.” But no, curiosity is a trait that has been formally excluded from the “MD” cult.