Who Controls Fake Lyme Disease News?
A response to this week’s CDC article on Lyme disease.
By Patricia Smith, Lyme Disease Association, June 14, 2017:
The time has come when the public is entitled to know who in government or elsewhere is controlling the treatment of Lyme disease. 43 years into the disease, patients who can range from just infected to seriously debilitated with long-standing disease, are all thrown the same tired old bone, 3 weeks of doxycycline.
Scientists who are able to publish the science behind longer-term treatment have their science ignored. The public is not told about persister cells being discovered which appear to be able to survive initial antibiotic treatment; they are not told about biofilm formation; they do not know about the Lyme bacteria hiding in different types of tissues. They are not told about the animal studies which show survival of the spirochete after treatment.
Government-funded NIH research has featured the same old studies with nothing new to offer sick patients, apparently due to the “experts” refusing to sit on peer review on studies with patients with long-tern symptoms–they do not believe in chronic Lyme. New technology is ignored.
Advocates are blamed for incorrect information being posted on the net, for spreading junk science, for misunderstanding the science, for vaccine failure, for misleading patients, for promoting chronic Lyme, etc. etc.
Patients are categorized as hysterical, needing psychiatric care, having symptoms after treatment no different than those of the normal population– bottom line, not physically sick. These Lyme denialists offer them a pat on the head and show them the door, all the while chanting the “no chronic Lyme” mantra, clueless as ever as to what might be wrong with these patients or how to cure them.
Treating physicians are excoriated for caring about patients, spending hours of time with them to make a clinical diagnosis of Lyme disease and oftentimes, co-infections. They are forced to test with antiquated technology using restrictive band definitions, tests which should have been scrapped years ago, band restrictions that never should have been imposed. Meanwhile, they look over their shoulder to check out whether the “Lyme police” are coming after them and their medical licenses, in part due to the
Draconian Infectious Diseases Society (IDSA) guidelines imposed upon them and their suffering patients: 3 weeks of doxy, nothing else, perhaps a psychiatrist, or what often happens to these patients, a “goodbye, live with it.”
CDC has only endorsed and posted the IDSA guidelines on their website, despite the fact those guidelines are stale and have long ago been removed from the National Guidelines Clearing House, set up under the auspices of the US Department of Health & Human Services. The Lyme Guidelines from the International Lyme & Associate Diseases Society, ILADS, doctors who truly have an understanding of the disease and work in the trenches to provide real medical help versus false erudition, are posted on the National Guidelines Clearing House, which indicates they meet the Institute of Medicine Standards for Guidelines.
Why does CDC refuse to put up ILADS Guidelines? They feel IDSA guidelines are the best guidelines, nothing concrete to support that assertion, since the ILADS guidelines are supported by IOM standards. Shouldn’t physicians be able to evaluate guidelines supported by IOM standards and accepted by the Guidelines Clearinghouse in relationship to stale guidelines not posted by HHS on its own National Guidelines Clearinghouse?
Too many people are getting sick, too many people are developing chronic disease, so now CDC has published in MMWR, an article titled “Serious Bacterial Infections Acquired During Treatment of Patients Given a Diagnosis of Chronic Lyme Disease — United States”Natalie S. Marzec, MD; Christina Nelson, MD; Paul Ravi Waldron, MD; et al.
Sharing horror stories a few patients experienced with IV treatments for Lyme, the CDC has shut down all long term treatments with antibiotics and with immunoglobulin. The CDC informed the Lyme Disease Association this morning that CDC felt this article was for the good of the patients, who don’t understand the dangers of IV treatments.
For the good of the patients, we need to know who ultimately controls Lyme. Why are “they” refusing to allow cutting edge testing, refusing to provide resources to improve poorly performing tests equivalent to underperforming tests with a Federal imprimatur, or refusing to allow broader band inclusion in existent testing?
Why won’t they permit long-term antibiotic treatment for humans when 70+ % of antibiotics in the US are used to fatten animals and are known to be causing antibiotic resistance; why stress the dangers of IV treatment for Lyme when other diseases such as cancer and HIV use IV and have not been singled out to warn patients of dangers; why do they refuse sick patients treatment that is based on physician judgement grounded in their assessment of the best science?
Why don’t they encourage further clinical trials to supplement flawed, underpowered trials; why do they acquiesce to dangerous policy pronouncements to assume–totally indifferent to patient health costs/benefits–that tests are false positive? Why don’t they fund research looking at chronic symptoms yet they do ignore the good science supporting post-treatment persistent infection.
43 years into the disease, with almost 400,000 cases in 2015 using CDC’s own 90% not reported calculations, we have no accurate test, no cure, and more questions than answers. To shape good public health policy for the good of patients, in place of fake news, let’s have real answers really soon.
Patricia Smith is President of the Lyme Disease Association.
The Infectious Disease division of the CDC is owned by Big Pharma and their operatives are in control, which means they control the budget and policy. The myopic ($$$) desire to have a vaccine for a disease that will never fit a vaccine model has allowed for the repression and suppression of Borreliosis information and science to come to the fore. Few know that the CDC is actually in the vaccine biz not just blindly supportive of it. They own over 50 vaccine patents.
So, while on one hand this is about money, money and more money, it is also about control.
The CDC, at least the Infectious Disease division, is perhaps one of the most corrupt government agencies in the USA, and there is a lot of competition for that title. I explore this in my book Incurable Me, specifically in the first chapter… “The House of Lyme.”
This just about captures it all. Dr. S supports what I always say, it is all about control, power, and money. I have been tracking LD for twenty years and have seen much good new info come along. During that time I have seen my wife go from functional to disabled with daily pain beyond belief. We have a great Dr. That said, we are in a palliative situation that really is not that effective. Now we say, can’t get well, can’t get comfortable, can’t die. It seems like continued suffering is in our future until one day the body will give up. This is a sad state of affairs of which I can no longer express my frustration and disappointment. Health care in general I feel will have to completely collapse before any real change will occur in a positive way. Best to all of you out there who suffer and those trying hard to make a difference.
It’s true Big Pharma controls everything as well as insurance companies involved on who gets what and who gets denied. Our healthcare system is deplorable and lives are being lost in a sea of corruption?
I lost my beautiful, remarkable daughter after suffering many years from this horrible,chronic Lyme and co-infections. Hopefully, others will be saved in the future through devoted doctors and researchers who never give up the cause.
Maybe they wish to control the population.
In the 1990s after almost two years of misdiagnosis for other aliments;(STDs, Epilepsy, Chrons, Leukemia, Lupus, arthritis) I tested positive for Lyme’s and was treated for it with about 10 weeks of oral antibiotics. Later in the same year my mother was diagnosed (after a morel mushroom hunting, trout fishing trip) with the disease. Also testing positive, but no delay in the diagnosis. Researchers 6 states away contacted her treatment team and after my personal insistence decided to treat with intravenous antibiotics.
About 25 years later now in her mid 90s guess who has out-lived several of her cardiac specialists, had pacemakers replaced and updated??
CDC needs to wake up to the proper treatment of this disease.
How unfair for all these people suffering from chronic Lyme desease!
They are entitled to a correct diagnosis and an effective treatment!
Really very sad!
How can Lyme Disease sufferers come to demand the kind of attention that AIDS sufferers received? Lyme warriors need to take a page from their playbook!! Something has to be done. Any government agency that refuses to give aid to the very people they were created to help must be revamped, replaced, or removed. We are paying their mortgages and car notes, and they ignore a disease that is killing their neighbors? Inexusable.
There is some overlap between Lyme an AIDS in that both illnesses were enhanced by bio-warfare programs. The Bb strain seems to have been made more virulent sometime in the last century, such as the activities that when on at Lab 257, and HIV seems to have come out of the Special Virus Cancer Program, etc. While both diseases were ignored, as is often the case when the government has had a hand in their creation, the situation with AIDS was a little harder to ignore because it was so concentrated in a specific population and the manifestations of the illness were so dramatic.
Bb can be very stealthy but when it is not the symptoms are all over the place that often can’t be traced back to their true source, especially as diagnostic testing is still so inadequate to identify victims. So, while 20% of the adult USA and global population may be infected, they are not dropping in the streets nor are they walking around with festering lesions. AIDS became a civil rights movement not just a community is search of a cure. And when it became about civil rights it was much more difficult for the powers that be to blow it off as is now the situation with Lyme. Also Big Pharma eventually had something to sell with AIDS, not so much with Lyme.
While the dark history of AIDS is still not open knowledge, we are still getting gas-lite to the max with the Lyme situation.
The medical community did not “appreciate” the way AIDS activism took control of their bailiwick. Consequently they took extreme care to counter-act the patient community early on in the epidemic. Most MD’s are not qualified to make Psychiatric or Psychological diagnoses, but that has not stopped them from using such diagnoses to dismiss both patients and the disease itself.