Yves here. Wikipedia has become widely accepted as a highly credible source (I use it and even contributed in their recent funding appeal). It’s therefore important to know its limits and how they arise. Unfortunately, it appears, like most information sources, that it is subject to pressure, in this case, as Bob Goodwin contends, the medical-industrial complex.
I am sympathetic to Goodwin’s thesis because I can see a similar bias against minority medical perspectives supported by experimental evidence in the Wikipedia presentation on autoimmune diseases. The normal treatment program for many so-called autoimmune diseases (rheumatoid arthritis, the most common, is the one generally used for research purposes, but others like scleroderma hew to the same pattern) is that of symptom suppression, as in disease management rather than cure. The problem is that the drugs cease being effective after a period of time. The doctors then move to a different type of drug, with the successors having less efficacy and more side effects.
There is an another protocol, developed by a board certified rheumatologist who was also a board member of the national organization, Thomas Brown. He was frustrated by the long term poor results and looked into past research paths that had been abandoned. He was stunned to discover that “autoimmune” was a made-up theory with no clinical support to justify the performance of drugs launched after WWII that dampened symptoms. Research before the war had instead been on the track of finding infectious agents. Brown identified one, mycoplasma, that he believed to be the culprit. He was able to get a limited number of studies funded and got promising results as well as having success with patients in his office. The difficulty in proving his thesis to a “clinical trial” standard was that his protocol uses an old off patent drug (tetracycline) and there’s no money for that, and his protocol takes time (the first six months, patients typically don’t show net progress because they get a Herxheimer’s reaction, which is pathogen die-off). So it takes beyond that period for patients to show real progress. Most report being entirely or largely symptom-free after two years. But that is a hugely costly length for a former trial.
You also cannot get tested for mycoplasma in a normal lab (only a narrow range of pulmonary mycoplasma that are an opportunistic infection in HIV positive patients). When my father suffered from a so-called autoimmune disease, dermatomyositis, which he was told is fatal in 5/6 of the cases within a year, he got several years of relief from anti-malarials. When his symptoms got worse, I found out about the Brown protocol. But my father’s rheumatologist debunked it. So my father decided to get his blood tested to see if it had mycoplasma. An out of state doctor friend found a lab in Florida that could test for it. But it is astonishingly difficult to get your own blood transported across state lines (my father was too debilitated to travel at this point). It took six months to navigate the regulatory/mechanical issues. When the results came back, the doctor friend called my father and said, “Your blood is swimming in it [the mycoplasma]”. But he was too sick to fight his doctors (he was also getting horrible side effects from the drugs he was on, including lesions in his mouth, which meant he could not eat, and the prednisone and other meds were making it impossible for him to sleep) and go to a new one (I had found a board certified rheumatologist in the area who would administer the Brown protocol). He shot himself a few days later.
You will see no mention in the Wikipedia entry on autoimmune disease of the studies supporting the Brown treatment or of the possible role of mycoplasma.
Similarly, I have a very successful colleague (as in he has the means and connections to get the very best treatment) who became sick in the early 1990s: joint pain, severe fatigue, difficulty in concentrating. After ruling out what they considered to be obvious culprits, the various doctors he saw insisted his problem was psychological. He finally found one who thought his ailment might be Lyme disease (this was when it was barely recognized) and at that point, it was advanced Lyme disease. He had to administer himself IV antibiotics at home daily for months (he had a stent in his arm, which was painful) but it eventually cleared up his problem completely. Since my friend is extremely conservative in the sort of doctors he chooses (as in only very highly credentialed, affiliated with major teaching hospitals) I am very surprised to learn that the idea that there is “advanced Lyme disease” is deemed a fringe diagnosis by Wikipedia and thus unfit for inclusion.
By Bob Goodwin, an investor and medical device entrepreneur who lives in Mercer Island, Washington
I have a personal interest in studying Lyme disease and found the information on Wikipedia about Lyme disease unfairly represented a significant minority view across a wide range of articles. I tried to help repair this and ran into obstacles. My personal obstacles were inexperience, anger, and difficulty with finding neutrality, but quickly improved. The far more interesting obstacle was an aggressive culture within the editing community that I will try to demonstrate has been captured in the medical areas, and that this is not inconsistent with what Wikipedia wants and needs. I hope reader comments will dissuade me so that I can submit a retraction.
I will explain my motivations for the article, outline the Wikipedia culture, talk about my experience, give independent references, and then tie together the case.
Here is a link to an article I am still working on about the Lyme wars. It has 40 sections, and 100 references and links. I don’t think it will ever go onto Wikipedia, as you will understand later. (Note: Nothing at Wikipedia is deleted, and anyone can edit everything, and can comment on anything, including that article-in-process.)
This is from the Summary:
The “Lyme Wars” is an ongoing dispute since at least 1993 between mainstream medicine (especially Infectious Diseases Society of America and Centers for Disease Control and Prevention) and a minority set of doctors, scientists and patient activists (especially ILADS).
The two main points of disagreement are
- The mainstream view that Lyme disease is over-diagnosed, and is easily cured with short term antibiotics, and that persistent infection (chronic Lyme disease) does not exist.
- The minority view that the actions of Infectious Diseases Society of America were quasi-regulatory as they controlled research, insurance coverage and participated in enforcement of their Lyme guidelines as mandatory.
There is no objective evidence of the truth of either of the points of disagreement. However the war itself has likely been harmful to public health.
The short reason it will never be published is because Wikipedia avoids the promotion of “fringe” points of view. They do not want to see an article on Earth start with the sentence “There are two theories on the earth. The flat earth theory has a long history and is still passionately held by…” The “WP:Due Weight” rule tells us to discuss fringe ideas with extraordinary prejudice.
The Lyme Wars are open warfare between doctors, insurance companies, patient activists, researchers, universities, publications and medical societies. The war has hurt patients. I think both sides deserve blame and I like the Wikipedia experience and discipline of neutrality. In my research I did not find one single research paper, review, book, newspaper article or magazine story that was neutral. Every reliable source I read took one side or the other. This story will be prevented from going into Wikipedia because one side of the war is a fringe group, and they do not want articles titled “The flat earth war.”
The intellectual problem for Wikipedia, however, is that the Lyme wars are not about a fringe group, but a minority view of bona fine professionals with evidence supporting their view.
This story has some implications I had not originally seen. It became obvious that the Lyme wars are simply a proxy war. We know big changes are coming to our health system. The Lyme wars teach us to expect the prosecution of doctors, lawsuits against medical societies, capture of research and medical societies from doctors, narrowing and standardization of care, dismantling the doctor-patient relationship and clinical diagnosis, and the intrusion of the internet into the dynamics of healthcare.
In Sincere Defense of Wikipedia
Despite this charge, I believe history will judge Wikipedia very kindly. It was an experiment almost 10 years old that had a big impact at a still very early stage in the development of mass information. It was a bold and visionary idea that to a large extent worked.
On a personal level, every person I worked with on Wikipedia was a volunteer. Most were willing to discuss points in depth. All were tuned to the rules and culture. All were smart and passionate.
The hidden truth, however, is that the most interesting articles in Wikipedia are battlefields. A large percentage of the effort of more experienced editors is to go around and delete new crap. Despite the claim that articles are not “owned”, this thin collection of gatekeepers has by necessity created counties for themselves as sheriffs. The anonymous Internet is obnoxious, and the sheriffs are acculturated to bad intent. Wikipedia knows this, of course, and wants more editors with good intent, and so they give newcomers like me lots of ways to avoid getting discouraged by sheriffs.
Who would ever want to be a Wikipedia sheriff? I guess I would, if I put a month or two into my article and got it published. I would watch every attempt to remove, deflect of distort carefully constructed narrative. My county would probably grow in the thin world of editors, because articles rarely stand alone.
Wikipedia is in a bind. They need more editors. Casual editors are scared off by sheriffs and those with ill intent. So they must rely on people with passion, which rarely comes from neutrality. The solution Wikipedia has fallen to is to entice “experts”, and to maintain a strong commitment to “mainstream views”, which is ultimately defined by the sheriffs and those they debate with.
Try a simple web search (please use Bing, the results on average are as good as Google, but they don’t use your personal information to the same degree) of any subject. The top results are a pretty good approximation of which web sites are being used the most. Wikipedia is at the top of those lists for many non-commercial subjects. Wikipedia is nowhere near the top in most commercial subjects. Except medicine. Later I will provide more evidence of this connection.
My Experiences on Wikipedia as an Editor
I will not rehash my newbie mistakes, which could be rationally used against me in a court of law to undermine my credibility when I make any criticisms of Wikipedia. But they are, as they say, “public record” in Wikipedia. But I learned pretty quickly.
I tried to edit some errors on the “Lyme Disease” article. The main antagonist in the war is called ILADS, and the article about them was two pages long (and still is) and could be a description of the flat earth society. So I decided to rewrite that. Every edit was “undone” within an hour, with a cryptic message. I undid the undo and wrote a long inquiry in half a dozen places. I got back a message simple and clearly stating that “we do not give undo influence to fringe views. Especially in medicine. See WP:MEDRS”.
I decided to appeal, and looked at all of the editing history, and all of the complaints and anger, and reached out to some rational voices. My opponent also selected allies, I think. We then debated on a ‘talk’ page for days. My argument was that Wikipedia has a third category called “Significant Minority Opinion.” All I needed to do was find a “notable adherent.” Pages of debate ensued until I discovered the Catch-22. To be notable, you must have a mainstream opinion. In Wikipedia medical pages there may not be a single minority opinion stated. In some cases the mainstream opinion is to have a debate, and that debate is exposed. The sheriffs are very committed to good summaries of the opinions of the designated leaders of each field. The CDC Lyme webpage disagrees with ILADS, so ILADS is fringe.
I politely folded, and continued a long conversation with one of the good sheriffs on my personal page. I also continued the fascinating research.
Independent References on Wikipedia/Healthcare
Rising out-of pocket costs (here and here) will discourage medical treatment (here and here and here). Insurance companies need to rein in costs, which they accomplish by creating barriers (here) to treatment of chronic diseases which are the most expensive (here).
Medical research predicts more people will use the internet for medicine, (here, here, here, here, here) and there is a call to control the internet agenda (here, here, here). Some are arguing that public health care information can be unethical (here) or internet advocacy undermines public health (here and here). Internet inaccuracy is measured by adherence to established guidelines (here and here). Self-diagnosis happens when people can’t afford to go to a doctor, so internet medicine is bad (here, here). And my favorite, people don’t always believe mainstream medicine (here).
Mainstream medicine recognizes Wikipedia as the key tool for patient information (here). There is a call for people in mainstream medicine to become author Wikipedia (here, here, here) and for Wikipedia use to be expected by medical students and doctors so needs to be accurate (here and here). Wikipedia is also focusing a lot of recruiting in medicine (here). Here is a critical review of Wikipedia not having all drug insert data (here) and an instructive response (here).
Medicine has decided it needs to capture the internet message, and that medical searches are going to Wikipedia. For Wikipedia to remain vital, it needs authors, and is getting them from main stream medicine. Wikipedia rules and culture are unintentionally supportive of capture.
The Lyme Wars were a good dry run for how to transform medicine, and mainstream medicine lost the information battle the first time. In the words of Professor Durland Fish of Yale University, “This battle cannot be won on a scientific front. We need to mount a socio-political offensive; but we are out-numbered and out-gunned. We need reinforcements.” (here) In the real war, the same mistake will not be made again.
Excellent article. I only wanted to add the author mentioned Bing as a “better-privacy” alternative to Google. There are much better alternatives than Microsoft. I recomend
A good list of services that will protect your privacy can be found at
for those interested.
There is also the lesser known privacy “proxy” to Google, Ixquick.com / startpage.com.
This gives you Google search results without the profiling bubble.
Forgot to say that you can turn a Duckduckgo search into a ixquick seach by putting !ix into the search entry.
As far as lyme disease is concerned,I must say everyone needs to see the movie”under our skin”.It is a documentary about the fight to establish lyme disease as a real thing, that people do suffer from chronically.
I saw that movie before it was released, as it was lent to me by someone I know whose doctor was one of the ones mentioned.He lost his license to practice medicine in the state we live in and she had to go to another state to keep receiving the treatments that were working for her.Of all the ambiguous discussion about the relative merit of this and that… What is in that movie is another example of the bizzaro world we live in.
The medical establishment(doctors,schools,insurance boards,etc. ) all clearly not looking at peoples experiences,and very interesting aspects of these diseases,but rather just “covering their own arse”.
What else do these “spirochetes”, have to do with other seeming “infectious” diseases?
In the movie there are scenes from some of these medical/insurance board meetings/decisions… where the crowds are being completely dismissed.Yet this profession pretends they are singularly interested in fact.But when it costs them money….not so much.
The current paradigm of lyme disease ,and some people’s experiences are dealt with in that movie…..
But on a more conspiratorial note, there was a rumor/story about the possibility that lyme disease was a creation of plum island ,,biological weapons experimentation in the days after WWII.Some of the NAZI scientists who were “escaped to America”(“operation paperclip” and others), and given new identities by the same people who created the NSA,CIA and committed the mk-ultra experiments and other mind control /population control experiments;who were experts in these type of “contagious agents/diseases”,and took a geographically in-consistant vector and “gave ” life/and diseases to these ticks, that caused new infectious epidemics that became more regular than what was a rare natural phenomenon.
In my WP research, I found the “Under my skin” was good in some respects, but had several significant factual errors (it reports Dr. MacDonald as having Alzheimer’s and to have forgotten all his research, while in fact he is currently active and publishing research on the Alzheimer’s Lyme Link). It is also a bit of a tear jerker for the purpose of arousing contempt. But it is not all bad.
Regarding the Plum island thing, this is an example of how Lyme activists have done far worse than the AIDS activists did. Conspiracy theories are more common that conspiracies, and conspiracy theories unnecessary undermine a cause that has plenty of purpose without the conspiracy theory,
Neutrality is hard, but both sides have hurt patients somewhat.
Add this to the mix………………..Institutional Corruption of Pharmaceuticals and the Myth of Safe and Effective Drugs
Donald W. Light
Rowan University, School of Osteopathic Medicine; Harvard University – Edmond J. Safra Center for Ethics
Jonathan J. Darrow
Harvard Medical School
June 1, 2013
Journal of Law, Medicine and Ethics, Vol. 14, No. 3, 2013, Forthcoming
Over the past 35 years, patients have suffered from a largely hidden epidemic of side effects from drugs that usually have few offsetting benefits. The pharmaceutical industry has corrupted the practice of medicine through its influence over what drugs are developed, how they are tested, and how medical knowledge is created. Since 1906, heavy commercial influence has compromised Congressional legislation to protect the public from unsafe drugs. The authorization of user fees in 1992 has turned drug companies into the FDA’s prime clients, deepening the regulatory and cultural capture of the agency. Industry has demanded shorter average review times and, with less time to thoroughly review evidence, increased hospitalizations and deaths have resulted. Meeting the needs of the drug companies has taken priority over meeting the needs of patients. Unless this corruption of regulatory intent is reversed, the situation will continue to deteriorate. We offer practical suggestions including: separating the funding of clinical trials from their conduct, analysis, and publication: independent FDA leadership; full public funding for all FDA activities; measures to discourage R&D on drugs with few if any new clinical benefits; and the creation of a National Drug Safety Board.
Number of Pages in PDF File: 11
Accepted Paper Series
Thanks for this, Patrick. I have a personal interest in Lyme and even more in rheumatoid arthritis. Have been dubious of mainstream med for some time, for me personally back problems, my MD wanted to do surgery, my chiropractor (from the MD, “Well, if you think he is helping you…”) wanted me to do ‘adjustments *forever*, finally got permafixed with a book, ” Treat Your Own Back” and martial arts – but I digress…). I now go to read the .pdf if they will let me, if not I have some connections at York U.
Sometimes I think that the biggest problem in our (Western) culture is that we send our young off to be educated when they have no personal experience with life and will believe what they are taught over their lying eyes, ears, etc. A better way might be free education to any person at any age.
The line between education and indoctrination is all to often dangerously thin.
The link above is a interesting video on the subject. Pay particular attention to the creativity test mentioned towards the end.
Whoo! V interesting, and (not incidentally) agrees with many of my observations over 50+ decades. Thank you for this, I will be exploring more by these folks.
No, really 5+ decades. (just seems longer…)
8 years ago my back was so bad I was told I would be on pain killers the rest of my life, and probably would need a fusion. My chiropractor (who could relieve pain until I got on an airplane again) asked me if I was taking Magnesium. I bought some Mag citrate and within two weeks things were much better. It seems Mg helps the muscles relax, taking pressure off the disks, especially while sleeping.
I’ve been symptom free with a combination of better nutrition and core strength training for 5+ years. Yes, the default treatment of drugs, injections and surgery is a gravy train for the medical-industrial complex.
Polypharmaca killed my mum. She was on 20 meds before she died, many of which were used to offset the effects of the others. There was zero science behind this protocol. And it doesn’t take 20 meds to mess someone up. AS little as two drugs in combination can be lethal. Oh, and how many combination drug studies have been done? One, five, ten??? I doubt even ten, maybe not even one.
Be warned–Polypharmaca is pseudo science at it’s worst. Brought to you by big pharma and it’s FDA lackeys.
So sorry, Malmo. My Grandma, too. She had a sampler in her dining room, “I need Thee every hour”. I (5/6 yrs old) thought it said “I need three every hour” and that it referred to her pills, of which she had many, many bottles on her night stand and around her room. It is not new, but it was never good. Big Pharma has made it much worse over the years. Who will look out for us citizens? Our elected reps and *our* government should do that, but…
Tell me about it. I used to quote Wiki on the major causes of WWII which, of course, included the Great Depression. To writ: The main causes of World War II were nationalistic tensions, unresolved issues, and resentments resulting from World War I and the interwar period in Europe, in addition to the effects of the Great Depression in the 1930s.
But lo and behold, not one mention of the Great Depression in the latest revised Wiki article: http://en.wikipedia.org/wiki/Causes_of_World_War_II .
Instead, the primary cause, according to wiki now, is a failed painter from Austria named Adolf Hitler!
The stubbornness with which people defend government-backed banking from the truth is astonishing, even to me. Surely, Satan is behind it since shares in Equity (common stock) or 100% private banks are both ethical means of private money creation.
That “causes of wwII” entry is a good example of a hopeless case. The 2004 creator of the article was not an intellectual titan and it was he/she who generated the dreary list structure. Which is the entry’s basic problem, aside from the dimwitted introductory section. My best experience on Wikipedia was when I was involved at the historical beginnings of an entry, working with a couple other NPOV and generous writers.
It’s rare in history that one can make such an unqualified statement as this, which is such a good approximation to the truth: the sole cause of WWII was Adolf Hitler.
You can, of course, debate endlessly how he achieved power, but he was the cause of the war that we got.
If not Adolf, then someone else. The Great Depression made the German people desperate for ANY strong leader.
But thanks for making my point about the stubborn defense of the banking/money model. Et to, dearie?
It’s a complement, in a way, that someone would massively edit that wiki entry because of little ole me. Yet not me alone, I’d bet.
I could have sworn their were some Japanese folks involved with WWII. I used to hear about Pearl Harbor Day as a pretext for US entry to the war.
Either history been re-written, or my memories of my long dead, paraplegic, 101st Screaming Eagles Paratrooper father dying in an army hospital are an illusion.
Wasn’t there a guy named Mussolini too?
I thought there were onerous reparations that Germany had to pay…and war debts owed by Britain etc. Is it neo-liberal propaganda that we’re all isolated individuals and that any action of any individual has nothing to do with any other individual…and that any motivation must come from inside and inside only that one individual? All the rest of us are innocent it’s just that one guy, that one bad apple.
Pretty much. Germany was industrially devastated after WW1. And it had been saddled with massive reparations (resulting in Keynes writing a book to warn the British nation about the whole mess) denominated in foreign currency. So to pay the debt, Germany did the one thing it could, print Marks to exchange for Dollars, Francs and Pounds to pay the debt. This causing a exchange rate crash, and the Marks finding their way back to Germany where it caused massive inflation.
You see the same pattern with Zimbabwe.
As I can remember Hitler’s and the Nazi party’s emergence is very related to not only the depression but also the political environment in Germany at the time. The party was initially supported by old german aristocrats and later on industrialists against the communists in Germany. Basically the Nazi party was a populist alternative to the growing German communist party Kommunistische Partei Deutschlands (KPD). The KPD was discredited due to the burning of the Reichstag, which I believe happened under strange circumstances.
“Anyone who has ever known doctors well enough to hear medical shop talk, without reserve, knows that they are full of stories about each other’s blunders and errors, and that the theory of their omniscience and omnipotence no more holds good among themselves than it did with Molière and Napoleon. But for this very reason no doctor dare accuse another of malpractice … the effect of this state of things is to make the medical profession a conspiracy to hide its own shortcomings.” – George Bernard Shaw, “Preface,” The Doctor’s Dilemma
The Internet and medical information…
“We can just Google it!” Or, Wikipedia it?
A search for a particular condition can bring up thousands of results.
The internet has virtually no controls over who is posting information or whether the information is correct, or even safe. The quality of medical information on the internet is extremely variable, limiting its use as a serious information source. A lot of what passes for health and disease information on the internet is made up of opinion, salesmanship, testimonials, and biased information that is not grounded in science.
A complete lack of quality control leads more easily to lack of reliability.
Information does not necessarily have to be false to harm.
Health information that is valid in a specific healthcare context may be wrong in a different one.
Patients reading information intended for health professionals may misinterpret information, leading to false expectations about treatment options.
It is possible to read a web page without having seen context pages or the “cover” page containing disclaimers, warnings, etc.
Scam artists use the Internet to peddle their wares on professional-looking sites that make false claims.
So how does one determine which websites are the most trustworthy?
Some reference guides for locating health and medical information:
“Every surgeon carries about him a little cemetery, in which from time to time he goes to pray, a cemetery of bitterness and regret, of which he seeks the reason for certain of his failures.” – René Leriche, La philosophie de la chirurgie
Good old Shaw.
The only option is to do your own research. Which means you have to actually know how to do scientific experimentation, which most people don’t bother to learn, even though they explain it in high school.
A close family member of mine is currently suffering from autoimmune disease. She’s been diagnosed with two varieties of myositis, which seems odd because both diseases are exceedingly rare. It’s as though the doctors don’t really know what it is. They put her on an autoimmune therapy that has preserved her ability to walk, etc. for the past two years. Of course this depends on the drug’s continued efficacy. And there are serious side effects.
I’m curious about the lab in Florida that tests for the pathogen. If you have any additional details to pass along I’d be most grateful. If you’d prefer to respond in an email that’s fine, the one in my comment will work.
There are a couple of labs that, I know about, that do more extensive testing. Genova Diagnostics and Professional Coop. (Not sure they test for mycoplasm.) These tests are usually not covered by insurance and you might have a hard time getting your “regular” doc to order. So you’ll probably have to see an another medical provider, like a Chiropractor or Acupuncturist, as long as they are within their scope of practice for your state to order lab tests. I think Professional Coop uses Lab Corp for drawing stations so it should be pretty easy to get your samples taken and sent to the lab. Hope this helps. Good Luck.
A good place to start learning about autoimmune issues is the book “Why Do I Still Have Thyroid Symptoms? when My Lab Tests Are Normal: a Revolutionary Breakthrough in Understanding Hashimoto’s Disease and Hypothyroidism.” by Dr. Datis Kharrazian
The most common thyroid problem is an autoimmune issue and they have been shown to have common features. Which include an over active immune system often being activated by diet (especially gluten and dairy) and low levels of vitamin D. The book has over 400 citations is well researched and somewhat dry but a good place to start.
I had one rheumatoid arthritis client whose pain and stiffness almost completely resolved by taking enough vitamin D.
Most doctors will not give a diagnosis for or treat Lyme disease for the reasons in the article. 90% are missed. Myositis is a common symptom of untreated Lyme. If your family member is getting steroids for mobility, then the infection has free reign over the body, even if the symptoms are reduced for a while.
7 cases of lyme myositis
2 cases of occular lyme myositis
I have Lyme Disease and was tested for many many pathogens including mycroplama (which I tested positive for). My doctor used Medical Diagnostic Laboratories located in New Jersey (and I live in CA). The phone number is 609-570-1000. Hope this helps.
It seems the battle of this research should be fought in JAMA and the Lancet, and not Wikipedia. This should be science and examined using the scientific method.
It’s clear that a lot more research needs to be done on autoimmune disorders. I’m not convinced that Wikipedia is the problem.
Lyme disease is an infection, not auto-immune.
The top journals are captured by mainsteam medicine.
How chronic illness is treated (when we need to rein in costs) is political, so the system is no longer centered on science. That is the Lyme war today, and will be a lot of wars tomorrow.
So is gadolinium-induced systemic fibrosis but they are calling it scleroderma if you don’t have kidney disease. How absurd? They gave me a differential of scleroderma even though I have gadolinium in my tissue. Four years after my last injection, my urine tested positive for toxic levels of gadolinium.
As Yves says “If you think medicine is based on science, you are smoking something very strong.” I agree with this statement.
Even though over 300 million have been injected with this toxic substance it will take another decade for people to realize they have been harmed by it. Sigh, GE and the other manufacturers have made the disease of gadolinium-induced systemic fibrosis one of many other autoimmune disorders and even though there are thousands of studies that say how toxic the substance is, it is not even on the radar.
I spent half an hour adding a comment on my personal experience with Lyme. Unfortunately, it was rejected without explanation, so let me just congratulate you on your excellent work.
There will be “lots of wars tomorrow”. Mr. Goodwin is correct. There is a sort of tyranny of the “Standard Protocol” in many areas of medicine which resists new evidence reagardless of scientific rigor. Useful post – thank you.
Here is a reference:
In 1993, Joeseph Burrascano gave testimony alongside Allen Steere to the Senate, were he asserted that a few researchers discredit opponents to create bias within federal agencies and medical journals in order to promote flawed science.
If you think medicine is based on science, you are smoking something very strong. One of my friends quit working in medical research (she’d been trained as a biomedical engineer, worked for the NIH, then one of the Big Pharma cos, now is an intellectual property lawyer) because she’d worked on too many studies where she’d been tasked to find a way to draw a line and declare a result from a data plot that showed random results. She said repeatedly and emphatically: “Medicine is a medieval art”.
A handful of many examples:
Why Most Published Research Findings Are False
Some Online Journals Will Publish Fake Science, For a Fee
Unreliable research: Trouble at the lab
The governments of the OECD, a club of mostly rich countries, spent $59 billion on biomedical research in 2012, nearly double the figure in 2000. One of the justifications for this is that basic-science results provided by governments form the basis for private drug-development work. If companies cannot rely on academic research, that reasoning breaks down. When an official at America’s National Institutes of Health (NIH) reckons, despairingly, that researchers would find it hard to reproduce at least three-quarters of all published biomedical findings, the public part of the process seems to have failed.
Should be, but JAMA is notorious for suppressing good scientific research they don’t like. Lancet is somewhat better because it’s not American, which helps; outside the US the financial incentives are different and so there is less violent hostility to evidence that the standard protocols are wrong.
Insurance companies need to rein in costs, which they accomplish by creating barriers to treatment of chronic diseases which are the most expensive
Yes, but big Pharma has exactly the opposite incentive. They like chronic diseases because patients have to buy their drugs constantly. However, if the drug is no longer under patent, then I guess the incentive disappears.
So, in theory, big Pharma should support the chronic Lyme disease group unless they have no patent protected drug for it. And big Pharma seems as powerful a pressure group as insurance companies.
You make a good point, except that it is the chronic lyme folks who are doing all the research on a cure (diagnostics, biofilm regulation, genetic detection and immune support) and it is the mainstream that is the ones saying “nothing to see here.”
Bob Goodwin, I have a theory and it may not work but I think it’s worth a try. If we can get insurance companies to work with groups instead of arbitrarily denying treatments that work and paying for treatments that maim and kill we might have something. You would think they would be on the side of keeping people healthy if they want to stay in business. For once the incentives built in the ACA is on the side of keeping the population healthy. I feel we have a small window of opportunity to win over the insurance companies before Big Pharma takes control of that too.
your points on autoimmune are true. There is some research that has shown how autoimmunity might happen, and there are certainly many adherents, and it is mainstream. But it is mostly a diagnosis of exclusion. The bad part is that steroids are often used to treat autoimmunity which do help symptoms, but if you have Lyme, are shortening your life.
Herxheimer reactions can occur with any bacteria and are self limiting, but are FAR more virulent with spirochetes than all other bacteria. If someone is having a powerful Herxheimer reaction, there is a good chance they have either syphilis or Lyme.
With the fear of losing your medical license doctors won’t even say the word Lyme, much less treat it, unless you can bring them a fresh tick or a fresh Lyme rash.
I totally agree with you on these points. Great article. We must not let them take over the conversation. That is mainstream medicine under the guise of Big Pharma.
By the way I remember back in the 70s when Lyme disease was just beginning to emerge. I grew up in New England. Coming from a rather large family I often wonder why none of us had it even though we had a summer home on a lake in Maine and spent time in the woods.
I spent 10 years wondering why I was sick until I was led to the trough by a reporter. I looked at Lyme disease and autism and wondered what I was exposed to that could make me so sick. This is why I know so much about the struggle of Lyme doctors and Lyme patients and the struggles of parents with autistic children. Instead of groups that band together around a single disease we must band together to force the truth to be written about disease in this country no matter who is liable.
Great article! The only suggestion I’d make is to keep probing Wikipedia for alternative ways of getting “neutral point of view” non-mainstream, non-corrupted medical science into it. I wonder if, instead of ‘invading’ an established entry, a new entry could be created on ‘alternative’ treatments for Lyme disease and/or autoimmune illnesses. During the grace period before it gets onto mainstream radar, make sure it is rich in expert citations, npov and not duplicative of other entries, and maybe it will survive.
In Wikipedia, “neutral point of view” means “biased point of view”. Consistently. This was a fundamental mistake made by Jimmy Wales upfront. There’s no such thing as a “neutral point of view”. Actual scientists suggested “evidence-based point of view” as a better alternative, but the scam artists who had current power in Wikipedia didn’t want to allow that to happen.
He had a STENT in his arm (not “sent”)?
Also, oddly enough, there is a huge amount of scientific, evidenced-based research into herbal/supplement effects on chronic diseases (including cancer) available at pubmed.com. (Warning: a lot of it is so terminologically dense as to be inscrutable).
Whether this research makes it into mainstream medicine is questionable, but I have found nurses and support staff, as well as younger doctors, far more open to complementary medicine than well established members of the medical establishment.
Supplements are used heavily in the non-mainstream Lyme Clinics with good results if you believe the talk pages.
One area that supplements have gained very rapid acceptance in the in the MTHMR gene mutations that a large percentage of people have (double digits) and even a meaningful percentage have more than one. In these cases (I will mangle the science, sorry) folates are under-produced and there is a much higher rate of almost every chronic disease. There are very straight-forward supplements that can completely reverse the problem, this is well documented and well accepted. The clinical use of this is moving slowly because the tests costs a few hundred dollars (although the supplements are cheap), and doctors get hammered for over-testing people without clear suspicion and without a clear idea of what beneficial treatment they would prescribe if the test was positive.
They have no problem ordering tests for profit when insurance will pay. I am one sick woman from over-testing. I have seven diseases (most diagnoses are the throw away diagnoses they call autoimmune) from being injected with gadolinium based contrasting agents (I had GEs product Omniscan eleven times and Bayer’s product Magnevist once). Gadolinium is a toxic metal and nano in size so it’s in ALL my organs. And my body doesn’t like it one bit.
The subterfuge on Wikipedia and other mainstream health related sites goes much further than Lyme disease. In fact I opine that the entire healthcare system is infected (pun intended) with fraud, waste and abuse, all aimed at making a profit without regard to patient safety and mass poisoning of the patient population with impunity.
It’s funny this topic comes up as I had just written a comment on ProPublica’s latest article on patient harm but found out some information about GE’s purchase of Amersham in 2004 so refrained. But I’ll post some of it here.
It recently came out at trial that of each bolus dose of Omniscan injected, 25% of the gadolinium is retained. It is prevailing scientific theory that retained gadolinium is in its free toxic state. And Judge Polster, in a Memorandum of Opinion and Order says: “It is undisputed that gadolinium, in its free state, is highly toxic to humans”. Omniscan is the most toxic of all the GBCA and I was administered the toxin 11 times. I was completely healthy; the MRIs were for breast cancer screening. I believe I am on my seventh diagnosis since getting those injections and these injections impact millions of people worldwide because if you have had an injection of Omniscan or any other GBCA you retained at least 1% (or 25% if Omniscan) of the gadolinium and it is in its free toxic state. These are facts. I cannot get a diagnosis for gadolinium-induced systemic fibrosis.
In my research I have found that in 2006 GE began to do damage control. They sued a radiologist to silence him regarding its product Omniscan and they hired (Yale is the “Official Registry” for NSF and has fewer cases registered than lawsuits settled) Yale’s Public Relations Director and promoted her to Global Public Relations Director for GE. Shawn Cowper, MD, Associate Professor at Yale and gatekeeper for the NSF registry and a few other doctors, with funding from GE and the other manufacturers, developed the diagnostic guidelines which make it near impossible for anyone to get a diagnosis. Then to add insult to injury they boast that they have solved the problem with Omniscan and the other contrasting agents with magic words and a wand.
Over three-hundred million doses have been injected into men, women and children with gadolinium (a toxic metal) and they are not ill from its product (sarcasm intended here) poof gone, problem solved. The only problem is many are very sick from these injections and don’t know why they are sick. And then when they need an explanation or a made up diagnosis they call it something else like scleroderma or fibromyalgia and let others pay for GEs, Bayer’s and the other manufactures’ faulty products. Even though GE admits liability in the MDL 1909 they put trial lawyers through the wringer (GE’s lawyer’s make over $1,000/hr.) while victims of GE’s product DIE.
I hope this will change with the ACA and I’m am doing my best to discredit mainstream medicine which Yves so aptly calls the *medical-industrial complex.
I’m really glad you don’t have kidney failure. Why do you want a diagnosis? If you want it to get treatment, just start being a pain in the neck. Stalling is a way to get you to give up.
To get a positive diagnosis you need a skin biopsy, per the following. If you have a diagnosis if Scleroderma, and not renal-poisoning, this is good. I know someone who had had their Scleroderma cleared. Auto-immune is often an actual infection.
Patients with NSF present with skin lesions typically beginning on the distal extremities starting with indurated plaques and papules especially on edematous lower extremities, later on the upper extremities, trunk and eye section develop over days to several weeks and later show a woody texture. The plaques are described as brawny, and the skin may develop hyperpigmentation . NSF lesions usually occur symmetrically. Patients may report sharp pain as well as pruritus, causalgias and paresthesias in afflicted areas. Stiffness and joint contractures can lead to decreased mobility. The progression is rapid in an estimated 5% of cases  leading to immobility within weeks and in a few instances death has been attributed to NSF. Besides skin developing lesions, internal organs can be afflicted including lung, heart, liver, bones and kidneys [33,34].
NSF diagnosis is usually postulated upon the medical history/physical exam and confirmed with a deep punch skin biopsy [2,56,58,59]. Eosin and hematoxylin staining are used for demonstrating the typical features. The skin biopsy shows a dermal fibrosis with a high density of CD 34 positive and procollagen I positive fibrocytes (circulating fibrocytes) and collagen bundles with prominent clefts between the bundles. Besides these collagen bundles elastic fibres can be detected as well. Additionally, but not required for diagnosis of NSF, factor XIIIa positive dendritic cells may be detected . However the histopathological and clinical features can overlap with other entities. Among these are Lipodermatosclerosis, Scleroderma and Morphea, Scleromyxedema, Porphyria cutanea tarda, Spanish toxic Oil syndrome, eosinophilic fasciitis and Eosinophilia- myalgia syndrome and chronic graft versus host disease [2,58,60]. It is necessary to combine both the clinical features and the histopathologic findings in order to avoid misdiagnosis.
Exposure to gadolinium might arouse suspicion towards the diagnosis of NSF however it has to be stressed that exposure to GBCAs does not factor into the diagnosis. The lack of GBCA exposures does not exclude NSF as diagnosis, as in about 5% of NSF patients no GBCA exposure prior to symptom onset could be found.
I’m sorry Bob but you are wrong on so many issues I don’t know where to begin. This is what mainstream medicine has you believe but it is not true.
Here are a few studies (one not published yet) and an interview with Dr. Abraham, one of the court approved expert witnesses in the MDL 1909.
I have to agree to disagree with you regarding autoimmune. It is any pathogen your body sees and tries to attack that is the cause of autoimmune not just infectious agents. One diagnosis I received was secondary adrenal insufficiency which I don’t consider an autoimmune but the professor said that it might be an infiltration of metal into my hypothalamus. She however refused to write it in my file. As to why I want a diagnosis should be obvious but one reason is to be compensated for being poisoned and ruining my life. My insurance company and the government (Liberty Mutual denied my LTD benefits) pay for my disability and they shouldn’t have to GE and Bayer should pay.
Lastly it helps no one to cover up any of this.
I am SOOOO sorry. I just copied the article on how to get proof from a medical point of view. Of course I am skeptical. My mistake completely. I do not think we disagree on ANYTHING. Even the autoimmune language we seem to agree on (sometimes it is a toxin). We are on the same side totally.
If you want, create an account on Wikipedia, and leave a note on my user page, I will try and help get a ‘neutral’ wikipedia page up about this trial. It is all a matter of public record, right?
The gadolinium from a single MRI will slowly be cleaned out of the body for most people, but ELEVEN DOSES of the WORST of the products means you’ll be dead before it cleans out. So yeah. Yuck.
The worst part of all this is that there will be people who will not trust any mainstream medicine once they encounter an instance of the for-profit manipulation of truth. Diseases will go untreated and people will suffer.
We have to assume that every new technology will be attacked and used to accelerate the transfer of wealth upward. Wikipedia is not special in this regard. The first time I met and spoke to a person who made a living working for one of the “New Media Strategies”-type companies, and found out how many of the comments on internet sites are done as part of an organized campaign, I began to understand just how co-opted social media and the internet have become.
It’s really bad when people start looking for truth along the edges. You wanna talk about how WWII started and how Hitler came to power? Who do you trust when you can’t trust anyone? I worry for the world my kid’s growing up in.
The medical profession is like any other skilled profession in that some are very good at it, like major league baseball stars. Some are limited like professional ball players barely hanging on in single A. For the average layman in need of medical services, it is a lot harder to find out who is who among the reasonably available alternatives, especially if the time element is pressing. The average layman has no gauge to measure the relative skill among the doctors or alternative practitioners under consideration. Similar lack of info faces the layman seeking legal advice, investment advice, automobile repair service or any number of specialized services. We tend to rely on the recommendations of people we know whose judgement we trust.
As to an instance in which a lone voice opposes mainstream opinion in any profession, the lone voice is sometimes correct but not often. The health field is much more fertile than, say investment management for maverick operators. It’s hard to know whether the medical maverick will turn out to be a hidden genius or the medical equivalent of Bernie Madoff. The really successful investment operator( who don’t rely on lawbreaking) have been mainstream operators like Buffett and Bill Gross. The same is probably true in medicine, but the Bernie Madoffs always have their followers in the investment world and so will the Madoff equivalents in these health world.
It gets worse, because doctors can’t evaluate each other.
With lawyers, they *can* — in a small community, every lawyer can explain which other lawyers are good at what.
With doctors, this is not the case. A complete quack who kills patients regularly can’t be distinguished from a genius by the average doctor. You are better off asking patients.
Bob & Yves: Thanks so much for this post. As someone on permanent disability with several autoimmune disorders, this is fascinating stuff. I was diagnosed with high titres of mycoplasma over 10 years ago, but noone (meaning MDs) has ever suggested something could be done. I am definitely reading the linked book!
I would love to be an email support person for you. Probably shouldn’t put my email on the internet, but maybe you can get it from Yves. The one good thing about the Lyme wars (the only good thing) is that there is a very strong network of people who have been giving each other semi-anonymous cross support and resources, which has been a very, very big deal.
At first I was a little reluctant, because a some of the people were younger women who reached out to me and I presumed that would make it trickier, but I was wrong. You actually never meet each other, and your only role is to support. It is a surprisingly simple, lightly used, and powerful companionship.
For many of these chronic illness there are not good answers, and at best bad choices. That is especially the time that one needs a neutral, honest and safe support the most – from someone who shares the bond of a struggle.
37% of people have IgG for mycoplasma, and will for the rest of their lives.
IgM rises first after an infection and lasts a few months and then subsides. IgG rises later at stays high for life. mycoplasma infects cell walls and stays dormant for decades.
There appears to be several scenarios where latent infection presents disease: Genes, Immune Compromise, and Co-infections.
It is co-infection that is most interesting, because mycoplasma is incapable of forming biofilm, but is capable of inhabiting one. One theory of Lyme (I don’t agree with it) is that the Lyme disease is not the cause of the disease, it is the biofilm hosting of mycoplasma. Biofilms periodically expel pathogens to promote new colonies. I’m in over my head, so may have gotten this wrong. But my sense is that mycoplasma in its latent stage without co-infection is common and not all that dangerous.
To complicate matters, there are a punch of different mycoplasmas. It is suspected that some are essentially harmless while others are severely pathogenic.
Would recommend the book Bad Pharma by Ben Goldacre. He deconstructs what is wrong with modern medicine and how profit has corrupted it top to bottom (not just the weird situation in the states). In summary he states we dont have the data to know which drugs or device are effective or actually harm us. We are kept in the dark for profit.
He has some interesting observations regards how patient interest groups are hijacked/subsidised to promote drugs/sales. Not saying that is the case here but i would not be surprised that the medical industry has a lot of PR editors working at keeping the wiki’s in line.
“We are kept in the dark ”
This is my new mantra. They want us to keep screaming for privacy. I would give up privacy in exchange for truth.
Thank you for the article. As a person who has supported a chronic Lyme patient for the past few years, and our struggle to find out what is scientifically trustworthy in the whole Lyme research and debate, I understand the sentiment here. However, I would say: be careful what you wish for….
Within a small area this tradeoff sounds “rational” I give you some personal information and you give me truthful information. This is the core of the clinical relationnship. However, when it becomes a question of “who is getting paid and how are they going to make more money” the rationality of the gamed exchange of privacy and truth is tilted, even twisted. The interests of the power brokers in the equation shift the exchange information to the opportunity to extract from the relatively powerless and give more to the powerful.
So relationships of mutual support among spontaneous communities are good. However, this too can be gamed – as you amply demostrate with the moral tale of Wikipedia’s corruption and fall. And evven in well intentioned communities (and we have subscribed to some of them in our search for therapies) some will support quack theroies that worked for them, and some will have an inkliking of what it means to research, test and derive answers.
As mathbabe never ceases to repeat: anecdotes (even multiple anectdotes) are not data. And as she also points out data itself has become corrupted coin.
German studies are mostly believable. US studies are a mess.
This is also why people – often well-educated – refuse to vaccinate their children and distrust medical professionals who say otherwise.
When I prepared an assessment paper, was told to you can quote Wiki but don’t expect the markers to take your work seriously.
Regarding Lyme Disease, I wonder if the solution is simple: kill the deer!
I’ve never been a hunter, but given the magnitude of this problem, that could change.
Misdiagnosis is very common and there are always going to be patients that benefit from an appropriate treatment that was mistakenly withheld. However, the presentation of the issue of chronic lyme disease as an argument between mainstream opinion and a reasonable minority opinion is not an accurate description of the debate. A summary of the data is presented here:
While the article is framed from a particular point of view (the “mainstream” one), that view is backed up by decades of actual research in quality journals. The counter-point “research” consists of anecdotes, opinion, and poorly executed research published in obscure or lesser journals. Long term antibiotic use comes with its own risks and it is irresponsible to prescribe such a course of treatment given current understanding of the disease. This, could of course change if new evidence emerges, but current best evidence
“Data from three double-blind, randomized, placebo-controlled trials have shown that there is substantial risk, with little or no benefit, associated with additional antibiotic treatment for patients who have long-standing subjective symptoms after appropriate initial treatment for an episode of Lyme disease.”
is that extended antibiotic treatment is not warranted. Adherents to this approach are in the same category as those who believe that immunizations cause autism or the complexity of the eye disproves evolution.
I did a very thorough analysis of all the data, and even emailed the chief editor of the NEJM for a better understanding. If you look at my incomplete article you will find wildly unprofessional accusations of pseudo-science by mainstream medical leaders who should know better than to throw that word around lightly. There are definitely wacko’s in the Lyme advocacy field, but that is another unfair reference made clearly in a NEJM article that lumped research done at Columbia university with the people that claim the government invented Lyme disease as a bioweapon at plum island. The guilt by association and Reductio ad absurdum that is present shows to me there is a war, not a debate. I wrote about the war. If you argued the other side I would have also pointed out the other side of the war as well.
Now as for your other claim, that the chronic lyme crowd is a fringe. The only evidence you offer is that the mainstream doctors are mad at them and really, say bad things about them and disagree with their research.
So by extension you believe that the NEJM gets to make these decisions by simply calling their opponents pseudo-science? Or do you have original research that shows that there is no good and credible research out of 1000 or so published papers that support the theories that are used by the chronic lyme researchers?
Lastly, there was an anti-trust suit against the body by the Connecticut attorney general that wrote that same NEJM article, and 7 state laws written to defend doctors against that body. Does NEJM get to say those public servants are now officially fringe too?
I think the medical debate is fine. I am not sure myself I think it is close to 50/50. But I get really pissed off when there is capture, and when patients are hurt. That is my angle.
I forgot to thank you for your opinion and point of view. I do hope that the IDSA and NEJM recognize that they are now for all practical purposes regulatory bodies, so need to seem non-corporatist, even if the true goal was the patient. There is too much polarization, so I appreciate your listening. As has been the case many times in history, science suddenly moves to the fringe view (I think the tectonic plates were ridiculed fringe at one time). So it is good for me to remain humble to the good intentions of everyone. I just hate the cost the war has had on patients.
I did not say reasonable minority view, that would have been a value judgment I am unqualified for. I said significant minority view, which I defined in the article as having notable adherents. It is my interpretation of the evidence that Professors Fallon and Dr Burgorferi are notable and are adherents. I further my belief of significance by the legal actions. I do have medical issues, I remain in mainstream medicine, and am disappointed by the evidence in the public record. I have personally known some luminaries in medical education and have the highest regards for them, and that is partially why I cannot fathom after weeks of looking and looking for neutrality in the record all I could see was ‘war’ and not ‘quacks’. I would love to take sides if I could understand why this war is being fought with bad PR and polarizing tactics by such accomplished men? I would love to take sides if I could understand why so many mainstream doctors in serious positions of leadership are the ones telling me to be cautious of the mainstream position. I would love to take sides if the ‘quacks’ seemed to be given a legitimate role in the process so they could hang themselves.
The solution is not going to come from long term antibiotics. Herxheimer reactions are worse than the disease. But the quacks are doing the research on better detection. The quacks are the ones doing the research on biofilm destruction. The quacks are the ones doing the work on immune response to chronic infection. How can this public record look good for NEJM calling them pseudoscience and anti-science? I am committed to using reliable sources and reaching rational opinions. I am not committed to apparent capture of science.
I have seen two of my friends’ children damaged by vaccines. The reaction by doctors was complete and total denial. They called it a coincidence and would not support the families until they accepted it as so. It is a common story in the vaccine injury community.
Infants andvtoddlers are edpecially at risk gor vaccine side effects because they cannot articulate how they feel and are rapidly changing. Older people can tell someone when they dont feel good after a treatment but stop short of a critical reaction.
But the USA vax schedule continually increases in both size and punitivess, and daring to question it leads to a barrage of vicious attacks and name calling.
This battle cannot be won on a scientific front.
Then it isn’t correct, almost by definition. Either the alternative treatment can be experimentally verified as effective, or it cannot. It may be difficult to verify (patient cohort and cost), but this has to be done.
The french version of wikipedia doesn’t seem so captured.
http://fr.wikipedia.org/wiki/Maladie_de_Lyme speaks about chronic effects, and details the ‘war’ between IDSA and ILADS.