Syphilis, like Lyme disease can have a long, asymptomatic latency period. Frequently infected persons are unaware of the illness until horrible manifestations occur. Syphilis is a relatively rare condition in non HIV infected individuals today. It was once a common and devastating disease affecting all tiers of society. Neurosyphilis, a form of tertiary, disseminated disease could be associated with a condition called "general paresis." This is a term familiar to every third year medical student. Syphilis in the brain could lead to insanity and dementia. The famous gangster, Al Copone became demented in Alcatraz due to this ailment. Many famous and infamous figures from the pages of history have been reported to suffer with the ravages of syphilis in its various forms. Today syphilis is still treated with only one drug- penicillin. The results with stage one and stage 2 syphilis are good. Once the spirochete has infected the brain the prognosis is still grim- patients do not generally improve.
Most of our knowledge about the natural history of syphilis comes from the Tuskegee experiment. Black males, without their knowledge, were followed for untreated syphilis for 40 years, from 1932 until 1972. The study was only stopped when its gruesome details were uncovered in a news story in the Washington Star. The physicians involved in the study felt no remorse. Comparison with Dr. Mengele of Nazi fame seems quite appropriate. The study was conducted by the US PUBLIC HEALTH SERVICE- a predecessor to today's CDC. The important data was collected from autopsies of the victims. A doctor involved in the study said: "We have no further interest in these patients until they die."
There were no Nuremberg trials. The physicians claimed they were only following orders. No responsible parties were ever punished.
This heinous, despicable, racist "study" was conducted by OUR GOVERNMENT, in the name of "science". And it was bad science! There was no treated control group. We don't know how often treated syphilis patients go on to develop tertiary disease. The same of course can be said for Lyme. Some cynical Lymies believe that the experiment is happening all over again. These historical precedents justifiably create a sense of distrust of our government.
We do know that spirochetes in the brain are deadly, as is clearly known in the case of syphilis. Neuroborrelios exists. This is not disputed by IDSA types. LLMDS believe that this condition is common. Many of our patients have dramatic mental status changes, abnormal brain MRIs and abnormal SPECT scans.
How can mainstream medicine be so cavalier? How can they be so sure that their patients are not suffering with devastating spirochetal infection of the brain?
How indeed?
3 comments:
Pox, by Deborah Hayden.
Really a fantastically interesting book if you have lyme. They suffered just like us.
Also Lynn Margulis has speculated that Nietzsche's sudden end of life madness was simply a sudden ecrudescence of neurosyphilis--a late stage final "flowering" in the brain.
A reasonable hypothesis (to me) is that indeed it is bioweaponized to be far more virulent than its naturally occuring forebears, that it got out by accident or not, and that a few scientists were put in key places to make sure the lyme outbreak was underplayed, as part of "national security". Can't talk about bioweapons. This original policy to downplay and diminish, by calling it a self limiting infection, has continued as a veritable law. Those players still rule the roost today, though the tide is turning.
That makes more sense to me than blatant persistent ignorance. We have so much interest in emerging and re-emerging pathogens, why ignore this one?
Lyme MD, of course you are absolutely right. I hope the burden you are trying to carry is not driving you to despair and to suffer like Semmelweis did centuries ago. I feel that you (and ILADS) are falling into IDSA’s trap by trying to prove that you are right (and you are). This is not the way to win, I think.
Who has the burden of proof? The IDSA scoundrels presumably eat lettuce because the general experience of lettuce eaters has shown it is generally safe to eat. If someone comes with the idea that lettuce is poisonous, the scoundrels would rightly demand proof before they or other lettuce eaters are forced to exclude lettuce from their diet.
The evidence of the nature and treatability of chronic lyme is quite obvious to those who treat it with some success. The burden of proof falls onto those who claim long term treatment is useless. I believe the IDSA scoundrels “proved” long term treatment is useless in a paper by Klempner et al, in which they treated the wrong set of patients for short periods (which they called “long term”), with low dosages, and “discovered” that the patients did not benefit from their misnamed “long term” treatment. The unconvinced can be referred to Verim Research (a company of scientists, mathematicians, and engineers who analyze facts for court trials); Verim is using Klempner’s paper as their sole web exhibit of junk research. They analyzed it, and trashed it to pieces.
If you try to prove the obvious, remember what happened with cigarette smoking during the 1960’s to 80’s: Paper after paper was published showing smoking causes cancer, yet they were all ripped apart by the cigarette companies’ scientists. It is practically impossible to account for all possible variables. The acknowledgment of the relationship between smoking and cancer did not come about because of a meeting of the minds between scientists and doctors, but came about in a purely political way: Reagan’s Surgeon General (E. Koop) said "smoking causes cancer." And that was the end of the ”controversy.”
Perhaps bitten, LymeMD, and I can publish a short paper to illustrate the sad state of affairs in Lymedom. Say, “Lyme: Burden of proof considerations.” Bitten has a PhD in engineering and could illustrate ethical situations with game theory (math adds respectability to a paper); I could mine your writings on the web for a first draft and contribute a “scientific perspective.” Your (Lyme MD’s) demonstrated eloquence would enliven even a mathematical-proof paper. If the 3 of us (or more?) prospective authors are lymeys, this would add pathos to the pedigree of authors’ degrees. The paper might be published and change the course of lyme history.
I am a lot stronger now and willing to undergo additional testing. Knees are problematic again. I have published one book and numerous articles for American Society of Professional Engineers. What could it hurt?
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