It’s often said that Lyme is a disease we wouldn’t wish on our worst enemy. I’m not so sure about that.
Today a young woman with late-stage Lyme—a mother, a wife, and friend to many—was taken off of life support. She had been close with another friend of mine. I cried when I heard the news, and my tears were tinged with blood.
Dear GOD. Is there no escape from this nightmare? We can’t even mourn without being reminded of the death grip it has on us—like the warden rattling his keys, chuckling under his breath.
Another friend is hospitalized, having finally been taken seriously, as she has wasted away to a whisper: unable to eat, chemically toxic, and can barely get out of bed. Even in this state, she was left to rot in her wheelchair in the emergency room waiting area throughout an entire day and overnight, only to be dropped on the linoleum by a nurse who callously insisted that her legs surely must work.
Still others are wondering where they will sleep in two weeks, when they can’t afford their apartment any more, or worrying about who will take care of their sweet dogs if it’s suddenly their turn to go.
And tonight I’m reminded of the incredible bonds that have been made despite, and through it all, as I laugh with friends I’ve never met, over the possible Dr. Google differential diagnoses for my bloody tears.
Yeah, this is one very messed up situation.
What’s worse is that the powers that be know the truth and let the horror show play itself out, anyway.
Worse yet, the organizations that claim to be helping, do nothing to make clear to the world the extreme, dire urgency of the situation. Instead of emphasizing the urgency to every single state Attorney General, every DOJ employee, every elected official, everyone, everywhere, who might have an ounce of power or influence to change one minuscule variable that could make a difference, they put out surveys to ask about our symptoms. Really. I mean, just spend an evening on Facebook and you can gather all you need without disrupting anyone’s normal routine.
They publish books that we can’t afford, about why we can’t get better, except all the information in the books is wrong. They charge $500, $1,000, $2,000 for an initial medical exam, then expect us to do not only our own activism, but to do theirs, too, by pushing legislation to protect their malpracticing asses from the medical boards. They enjoy legally sanctioned tea parties with the enemy as part of the 21st Century Cures Act, with no expectations except to produce a status report in three years. Good thing it’s a long time until the 22nd century. We wouldn’t want any hernias to result from the arduousness of the process.
Forgive my bitterness, but I just might want my worst enemy to get Lyme disease.
One may ask, “Beaux, who is your worst enemy?” I’d respond, “Do I have to pick just one?”
Allen? Draft-Dodging Rheumatologist?
Let’s see…you could start with Allen Steere, who produced the fraudulent research as the basis of the falsified case definition. He’s the reason there’s an ELISA to screen out the neuro Lyme cases in the first step, and the reason OspA and OspB were left out of the testing scheme.
Allen was also one of the authors of the infamous 2006 IDSA guidelines that then-Connecticut AG Richard Blumenthal sued IDSA over but lost because he could not charge the bastards criminally.
Barbara What’s-The-J.B.-For-Anyway Johnson, CDC Officer unfit to be a woman?
You could then go to Barbara J. B. Johnson, whose name I can’t speak without also hatefully uttering, “bitch.” She was the ringleader of the 1994 CDC Dearborn conference where the fake testing was made official despite the protestations of the labs who participated and said the new scheme was bogus.
Here, CDC officer Barbara Johnson’s 1992 patent with SmithKline, the maker of LYMErix, describes HLA-restricted responses (meaning there are the not-sick people, and then there are us Lymish with bleeding eyes and floppy legs and such):
“Certain of these antigens are characterized as being B. burgdorferi B31 strain specific and major histocompatibility complex (MHC) nonrestricted. Certain other of these antigens are characterized as being MHCrestricted. Sera generated to these antigens (B31 MHC nonrestricted and B31 MHC restricted) are further characterized by the ability or lack of ability to react with B. burgdorferi JD-1 strain; the antigens themselves (B31 MHC nonrestricted and B31 MHC restricted) are further characterized by being homologous or heterologous with B. burgdorferi JD-1 strain antigens. The most preferred antigens of this invention, because of their ability to induce cross-strain immunity to B. burgdorferi in different animal haplotypes, are characterized by being B31 MHC nonrestricted, JD-1 crossreactive, and JD-1 nonrestricted. Other antigens are also useful in vaccine compositions and as diagnostics.”
Alan “I Own a Gazillion Patents on Lyme and Stuff” Barbour?
I don’t know, for worst enemy I might pick Alan Barbour, another CDC officer, and one of the owners of the OspA vaccine patents. In 1993 he wrote in the journal Science, The Biological and Social Phenomenon of Lyme Disease, with his buddy, Durland Fish:
“After a few weeks to several months, as many as 70% of untreated, infected patients suffer the effects of bacterial invasion of one or more distant organs or systems, including the brain, nerves, eyes, joints, and heart . These late manifestations, particularly the dysfunction of the central nervous system and chronic arthritis, are disabling but rarely fatal .”
Of course, the LYMErix trials were already underway, and Allen Steere was off in Europe committing his fraud (at whose direction, we don’t know, but it was supported by NIH grants–ILLEGAL), so Barbour and Fish had to perform a balancing act of sorts. The above quote emphasized the seriousness of untreated borreliosis (which accounts for most of us Lymish due to the bogus testing), since the Lyme Racketeers wanted to make sure there was plenty of hysteria and therefore demand for their vaccine.
But in the same publication, they also made sure to point out that there are two outcomes (supporting Barbara Johnson’s finding)–1) arthritis, and 2) non-arthritis (or post-septic, neuro-Lyme), while saying that the arthritis cases are predominant in the U.S. but not in Europe, and isn’t that curious.
“The most compelling evidence for this difference appears in the infrequency of joint swelling and inflammation as sequelae of acute infection in northern and eastern Europe as compared to the United States . This difference does not seem to result from acquisition bias. The absence of “arthritogenic” strains may help to explain the rarity of chronic arthritis after erythema migrans in regions of Europe and Russia. Aside from its taxonomic value, this difference in disease expression may provide insight into the pathogenesis of other chronic arthritides, such as rheumatoid arthritis, for which an etiologic agent is not known .”
THEN he turned around and in the exact same article, trashed neuroborreliosis victims as psych cases.
“Neurologic symptoms, especially those involving changes in cognitive functions, are especially difficult to interpret [69- 71]. Moreover, factors such as the premorbid personality and a tendency to somatization may determine the length of convalescence and the response to postinfection fatigue and joint aches [71,72]. Even if the original diagnosis of Lyme disease is undisputed, lingering or recurrent symptoms, many of which are also characteristic of chronic fatigue syndrome or fibromyalgia, may not be attributable to persistent infection [9,10,70,73].”
This is just a small TASTE of Alan Barbour’s bad medicine. What is truly horrifying is that he now sits on the science board of the Bay Area Lyme Foundation.
Gary “Da Worm” Wormser?
Don’t you just want to punch that face? This guy was another of the IDSA guidelines authors, and I think we probably all remember how smarmy he was in “Under Our Skin.”
Well, it gets worse. This crook helped ensure that Dearborn went uncontested by lying in his 1993 research report, “Serodiagnosis in Early Lyme Disease,” about how many patients actually tested positive.
He SAID 35 were interpreted as positive, but then when Steere’s Dearborn standard is applied, ONLY the 8 based on both IgG and IgM criteria and one based on IgG criteria make the cut. That’s 9 out of 59, or 15%. Or the arthritis cases.
The cases on the right:
Later, Wormser published about OspA being immunosuppressive, and dose-dependent–meaning, the bigger the dose, the worse the AIDS. Nice guy, eh?
Mark “Klemptomaniac” Klempner?
Directly responsible for the IDSA guidelines, Mark Klempner is a real sweetheart. Looks like he’s puckering up for a little smoochie-smoochie in his photo.
The IDSA “guidelines” on the “diagnosis and treatment of Lyme disease” are based on a 1997-2001 “study” by Mark Klempner, and are meant to reinforce the false notion that IDSA thinks Dearborn is valid.
A) Klempner used the Dearborn case definition as a qualifier.
B) He conducted this so-called study after publishing that Lyme was incurable with ceftriaxone even when the spirochetes had no host cells to hide within (1992).
C) Klempner allegedly “re-treated” patients with IV ceftriaxone for 30 days, when two-thirds of his victims had never even had the standard of care, 30 days of IV ceftriaxone for this known meningitis.
D) Klempner is the author of at least one valid biomarker of central nervous system degradation (MMP-130, 1992), yet he used invalid checklists used for psychiatric patients to assess his non-re-treatment outcomes.
The Biggest Psychopath of them All? If Klempner’s a sweetheart, is this one a Sweegheart?
Edward McSweegan is the guy who was outed for being employed by the NIH but not actually doing anything, except writing his own terrible science fiction books. What they didn’t out him for was the constant trashing of Lyme victims who he had helped to create in the first place.
In his position at the NIH, he directed research funding to his cronies at the American Lyme Disease Foundation (ALDF, of which he is a card-carrying member and founder). This is important because the ALDF is a false front for the entire LYMErix racketeering organization, and acts as a marketing/PR firm for the Dearborn case definition.
Although his blog unexpectedly disappeared from the internets sometime last year, I grabbed screen shots of what remained on the Wayback Machine. Here are a few samples of his obsessive harassment of ill and disabled people:
So, yeah, it’s tough to pick a worst enemy. Not so tough to wish Lyme disease on them. In this life or beyond, I am sure they will get what is coming to them.
I don’t want to cry any more. Bloody or not.