Who can we trust for accurate info?
Yale researchers working with Russian scientists have discovered a new tick-borne disease affecting thousands of Americans each year. It’s a bacterium called Borrelia miyamotoi, and it’s a distant relative of the spirochete that causes Lyme disease. It’s found in the same deer tick that transmits Lyme.
The new bacterium causes higher fevers than Lyme disease does, and the fevers often disappear and reappear after a week or two. It was actually discovered over a decade ago, though Dr. Durland Fish, the lead Yale researcher, was repeatedly refused a study grant from NIH until the Russian scientists proved it caused illness.
We are worried, frankly. If the NIH, the Centers for Disease Control, and the major media respond to this new illness as they did with Lyme disease, consumers have very little hope of receiving helpful, truthful information about how best to treat the disease if they become infected.
The New York Times article makes numerous incorrect statements about Lyme disease and its treatment—then says the new disease should probably be treated the same way. It says, for example, that two weeks of antibiotics “normally cures Lyme.” But many US and European studies demonstrate that short-course antibiotics actually fail to eradicate the Lyme spirochete—and result in up to a 40% relapse rate.
Moreover, mainstream medicine disagrees wildly on the best course of treatment; long-term IV antibiotics are recommended by many highly regarded authorities, though as we noted in February, chronic Lyme disease (CLD) is a systemic, debilitating condition that often persists despite antibiotic therapy. Integrative physicians are finding success with more holistic protocols.
The Times article then makes outrageously inflammatory statements such as “Most medical authorities, including the Centers for Disease Control and Prevention and the Infectious Disease Society of America, take the position that ‘chronic Lyme disease’ does not exist and that those victims either have other illnesses or are hypochondriacs. They oppose the solution demanded by some self-proclaimed victims: long-term intravenous antibiotics.”
Yes, the Infectious Disease Society of America believes chronic Lyme disease “does not exist.” But to say that “most medical authorities” agree is totally false. The International Lyme and Associated Diseases Society is filled with respected medical experts who say that chronic Lyme is a widespread, serious, and complex disease. To dismiss chronic Lyme suffers as merely “hypochondriacs” and “self-proclaimed victims” is not only offensive, it is unacceptably sloppy journalism.
The Times article quotes Dr. Fish talking about the difficulties in getting the study completed: “It’s been like pulling teeth. Go ask the NIH why.” But the reporter never went to NIH to ask the question. Was it just laziness on his part? Or is mainstream media so beholden to drug company advertisers and conventional medicine that no other view is considered?
If media reporting has been this untrustworthy with Lyme disease (which affects up to ten times as many people, though the statistics are unreliable and the real totals may be higher), how can it be relied upon with this new disease?
Unfortunately, we can’t trust the government’s Centers for Disease Control (CDC) either—the agency is ill-equipped to detect Lyme disease at all, much less chronic Lyme disease. Dr. Joseph Burrascano, who has treated the disease for over 30 years, says, “If you rely exclusively on the CDC diagnostic criteria, you’ll miss about 90% of cases, as very few patients fit the strict ‘classic’ profile defined by CDC.”
Nor can we trust the government’s National Institute of Health (NIH). It took them ten years to agree to study this new disease, and they are consistently behind cutting-edge medicine. For example, NIH refuses to study intravenous vitamin C, one of the most important adjunct treatments both for tick-borne diseases and for cancer.
If we’re to successfully tackle this new illness, we will need to rely on integrative physicians who understand and treat complex diseases with whole-body approaches. Treatment must be tailored to the individual. Dr. David Jernigan, a leading Lyme expert, has a fact-filled website on the treatment of Lyme disease and other tick-borne diseases. While we cannot recommend specific treatments, readers may wish to know what some respected integrative Lyme practitioners recommend:
- Frequently mentioned Lyme-specific protocols include hyperbaric oxygen therapy (but only if one does not have the co-infection Bartonella), intravenous vitamin C, samento (Cat’s Claw), colloidal silver, and artemisia. Some integrative doctors prescribe long-term antibiotics; if yours does, it is important to maintain a healthy GI tract with probiotics and digestive enzymes, as antibiotics wipe out the natural gut flora, which is an important part of the immune system.
- Another component of a whole body Lyme protocol is detoxification and building a strong immune system. Sweating, eating lots of cruciferous vegetables, taking dandelion, milk thistle, detoxifying herbal teas, chlorella, garlic, etc., are all excellent detox protocols. Diet: whole foods, fresh vegetables, and clean sources of protein. Maintain a low glycemic load: Lyme and co-infections like Candida thrive on sugar. Maintain high levels of nutrients: Lyme sufferers may be particularly deficient in magnesium and CoQ10.
- It is important to get daily exercise, to keep the lymph moving and increase body heat—Lyme seems to be sensitive to heat. Hot detox baths may also be helpful, and can speed healing. Dr. Jernigan recommends several specific baths in his book Beating Lyme Disease.
So, I sincerely hope that ANH-USA and maybe Dr. Fish have written to the NYT to correct the mis- or dis-information.
That’s one of the most frustrating things about the media, they seldom correct anything and never correct disinformation.
I don’t have personal experience, but am assured by a friend that eating horseradish leaves is quite effective against Lyme’s disease. (certainly that is less expensive and less invasive than most of the suggested approaches.)
Homeopathy is also beneficial and curative in treating Lyme Disease.
I appreciate this article. I have had chronic, late-stage Lyme for 13+ years and am disabled by it. I did not know that Lyme feeds on sugar, although my LLMD has since the beginning asked me to cut out sugar and lower my glycemic index, which is a very good idea anyway. My LLMD discovered that I had Lyme after 10 years because he knew my history so well and he put all the facts together. Lyme is a clinical diagnosis. We need many more LLMD’s and doctors who want to learn about it.
Please enlighten me. What is an LLMD?
More data, more proof that we’re just culture-plates waiting to grow more bugs … and to have them invite in even MORE bugs. For many years, we’ve treated Lyme’s successfully by taking a comprehensive integrative approach, far beyond merely antibiotics. Most folks are reluctant to make the expense, since they’ve heard of quickie-treatments “that have to work” — until they finally get so sick and so desperate. This NEW ticker will really confuse the issue as newbies and false prophets start adding in their two cents — treatment can be expected to become ever more confused rather than clarified. Incidentally, almost everyone forgets that The Yeast Syndrome is almost always a fellow-traveler … often predisposes to tickers and other parasites and infections ….. Please don’t settle for less than expert care …..
Chronic Lyme may actually be a mitochondrial disorder/disease triggered by the initial infection with Lyme. Lyme Disease is a broad term, and as we know, may be an infection with more than one organism carried by more than one kind of tick.
Mitochondrial disease is a chronic, progressive disorder for which there is no cure. The cells cannot produce enough energy to function, thereby causing multiple systems in the body to suffer (neuro, gastro, cardio/vascular). Some people with “Mito” are born with the disease, but it can also be triggered by an infection, toxin, medication, etc.and develop at any age
Our medical community does not understand mitochondrial disorders and need to consider this as a possibility when dealing with multi-system complaints from patients. It is hard to diagnose and may require a muscle biopsy which is only performed by a few labs in this Country. Treatment can help if a clinician is aware and educated about disease on a cellular level.
Lyme is a mis-nomer for a myriad of pathogens that can be injected via various vectors. Lyme patients have shown up with Borrelia and many different kinds which are all susceptible to different antibiotics, many kinds of Babesia, a protozoal infection, Rickettsias such as Ehrlichia Chaffensis, Anaplasma phagocytophilum, Rocky Mountain Spotted Fever, Typhus, and Rickettsia Helvetica in Europe, all kinds of Bartonella, Mycoplasmas, Chlamydias, Tularemia, Brucella, Coxiella burnetti or Q fever. Over 100 viruses may be transmitted by a tick so we see Powassan virus in WI and its cousin, Deer tick virus in Long Island. Coxsackie and HSV 1 seem to be quite prevalent. Parasites, fungi, etc can all be transmitted by a miniscule tick. I have seen people with Parvo virus B-19, HHV-6, Toxoplasmosis, Dengue fever, Psuedomonas areuginosa, EBV, CMV, and all previous infections which were being controlled by the immune system then come back to rear their ugly head which is why we see twenty year olds with shingles. The immune system is suppressed, evaded and infiltrated by these pathogens. Crippled immune systems are what we are dealing with. So 14 days of one kind of antibiotic is like a mosquito fart in a stifff wind. Each of these pathogens require different treatments. Yes the IDSA is right that we have many intracellular pathogens but they can’t seem to figure out most of them and do not know how to treat them, so instead they choose to ignore very ill patients. We know that Brucellosis, and Chlamydia pneumoniae and Mycoplasma pneumoniae are chronic infections and we see lyme patients with these all the time. Borrelia may behave like these pathogens in the chronic stage. What we need is for all our governments to acknowledge the devastation of these pathogens and figure out how to cure people. Interference of bacteia in Quorum sensing is being looked at as a possible way to block the bacteria from communicating inter and intra species. Our money needs to be spent on research.
I Have never been able to understand why the denial exists. I know an MD that lost his license in Texas because he treated Lyme how it needed to be treated.
I asked a vet in Central Texas how often he saw Lyme and he said about one tenth as often as ehrlichiosis. It is in Central Texas and the Feds say it’s not!
Next I asked how do you treat these diseases? He said about 2 to 3 weeks of antibiotics. Then I asked does this cure it? And he replied, no, it usually just knocks it down for a while.
Just great, if you can’t beat it, it doesn’t exist!
In reporting on newspaper reports please print the name of the author of the story. We need to give these agents of the Medical Drug Complex name recognition, as they sometimes write and publish in multiple outlets. Without the names one tends to think there is a widespread opinion when it is in fact one person speaking from multiple locations.
On thing all these problems have in common is politics. The dominant political philosophies and the two political parties have been subverted by the same corrupt money interests. Instead of dealing with the symptoms one at time, let’s eradicate the agents and their hosts. I’m putting my own personal efforts into supporting the Libertarian Party. Please don’t listen to what these people write about Libertarians, or Republicans who claim to be Libertarians, go to http://www.lp.org/platform and get the facts for yourself.
The platform does not solve all of life’s problems, but it guarantees you the right to pursue and implement solutions, independently or collectively. Now that’s liberty!
Lyme’s disease does not have to become a debilitating disease if treated with high doses of Vit C. At least 10,000 mg per day or preferably injections of Vit C as well as the antibitotics.
I was bitten by a tick about 25 years ago. I was only diagnosed with Lymes 20 years ago after becoming ill. All the years before I had been on high Vit C for different undiagnosed symptoms.
I then took antibiotics and homopathic nosode therapy plus the High doses of Vit C. I now have only low grade antibodies present and apart from skin problems am not aware of any after effects of the Lymes.
I am a medical science writer and a publisher of books on the politics of medicine. In 2010 I edited and produced a large book for the Lyme Action Group of Ontario and Canada’s national patient support group CanLyme. The book is published on a non-profit basis; patients paid for the original printing costs. When purchasing this book you donate $ 30 to these two organizations. If you order 5 copies or more (many people give copies to doctors and legislators) a 50% discount applies; you always pay for postage. It is entitled:
Ending Denial – The Lyme Disease Epidemic – A Canadian Public Health Disaster, ISBN 978-0-9811337-1-3. I brought together the leading experts on this disease and their current mainstream, peer-reviewed research is published (reprinted) in this book as well. It contains world statistics, legal issues, political background to the so-called “controversy”, and most important of all: the actual treatment protocols in full. These include the protocols for those who cannot take antibiotics as well as those that use antibiotics. These treatment protocols are internationally published and validated. The book is essentially designed for patients to get correct information, for doctors to learn how to diagnose and treat it, and for politically active people to help make it possible for doctors to treat this disease without risking the loss of license.
Currently there is a bill before the US Congress that would go along way towards making correct and complete information on all tick-borne diseases available to everybody: Bill H.R. 2447. If you are an American reader of this e-mail, contact Congressman Frank Wolff to find out how to support the passage of this bill.
In Canada, the publication of this book resulted in several provincial governments opening websites which contain relatively good information on Lyme Disease prevention, and medical researchers from the universities of Toronto and Calgary published first rate articles in 2010 and this year supporting Chronic Lyme issues and demanding better testing. A few weeks ago an excellent new test has been developed which will make testing all tick-borne diseases infinitely easier. Contact me for more information and links: [email protected].
I’ve had chronic neurological Lyme Disease for about 20 years. Thank you for challenging the New York Times which too often isn’t really searching for the “truth” and tends to just parrot the prevailing myths of the ignorant majority. I hope you sent this editorial to the paper for publication. Not only has NIH and the AMA not recognized chronic Lyme Disease, but they have actively persecuted doctors who do the right thing and try to help thousands of people who are disabled by this very complex and difficult to treat disease. For more information, just google, Dr. Charles Ray Jones, MD who has been treating children with Lyme Disease for decades and is being persecuted by his state medical board for his efforts. You can also contact Phyllis Mervine and Lorraine Johnson, at CALDA, the California Lyme Disease Association for extensive information on Lyme Disease and the politics surrounding its diagnosis and treatment. Thanks again for the excellent article.
Unless we put Medical Freedom in the Constitution, the time will come when Medicine will organize into an undercover dictatorship…..to restrict the art of healing to one class of men, and deny equal privilege to others, will be to constitute the Bastille of Medical Service…… As such laws are un-American and despotic and have no place in a Republic. The Constitution of the Republic should make a special privilege for Medical Freedom……Benjamin Rash, M.D., The Surgeon General Continental Army, 1777 Signatory, Declaration of Independence.
What else is new? Government and the medical community are almost always behind the cutting edge in everything. Take autism, for example. It was finally declared earlier this year that autism is caused by microglial cell inflammation. There’s about 4 docs in the country who are on board with this and treating accordingly. Even my kiddos neurologist is telling me to just give my Aspergers kid tons of OT, when lowering the inflammation can solve most of his issues. Everyone else just seems to want to shrug their shoulders about autism, as if there’s no cure or solution to the problem. It’s a good thing I refuse to believe them.
Who’s $$ is behind these misleading claims by the CDC, NIH and ISDA? If you ever encounter a doctor who mentions hypochondria, RUN to find a Lyme literate medical doctor. There are far too many doctors and especially pediatricians who are ignorant of the symptoms and misdiagnose patients when time is so important in treatment of Lyme. For example my son was diagnosed as Mono, then chronic fatigue syndrome, until the Lyme had gone neurological. If it wasn’t for the Bell’s Palsy he’d still be misdiagnosed. We need a GOLD STANDARD test!
Don’t eve get me going. CDC just released a “major finding” of 2002. When this all explodes, its going to be ugly and there will be a lot of family grieving dead loved ones and looking for answers. You can’t understand the rage we live with. If you havent already, watch Under Our Skin… its a documentary -explanation of the politics of Pharma and Insurance denial of chonic lyme….. they do not want to pay for it because they know how big it is….. check it out…free through Netflix. or on hulu.com. Peace.
First, I do not know anyone who looks for verifiable information in the New York Times, especially scientific data. The New York Times forfeited their integrity along time ago. Second the reporter was probably just lazy and a sloppy journalist as this has become the standard practice in the field. Third, information about Lyme disease is passed to physicians, whom the majority having now also become lazy and sloppy and little more than pharmaceutical reps, refuse to read in order to stay abreast of all the new data coming available through research. Fourth, due to climate change the number of vectors caring diseases have increased and the recombination of these diseases inside the vectors are creating new infections. Say, infection to a doc and he pulls out a prescription pad for antibiotics used to treat bacterial infections whether yours is viral or microbial. Its not stupidity or lack of scientific information, its pure damn laziness due to their dependence on the pharmaceuticals. Finally, the best protocol I have found is through Dr. Klinghardt of Seattle, Washington.
There will be no such thing as true “Healthcare Reform” until Big Pharma and all other corrupt federal agencies such as the FDA, CDC, NIH etc. are kept out of research and our physicians lives. The worst part of it is the federal agencies are completely bought off by Big Pharma who in turn brainwash our physicians into believing their information to be the “gold standard”. Unless we are able to get their blinders off our medical establishment and let them think for themselves Big Pharma has us exactly where they want us ILL and paying THEIR bills.
It is so tough to live in a time when money governs information. It is the worst kind of censorship, costs lives of the ill and the whistle-blowers. The more facts one has the better prepared one is to take on the challenge and ask the hard questions over and over again.. “why is my titer high and then low? Why is my Western blot titer creeping up and then negative?” Ask 10 doctors and you’ll get similar (usually vague) answers. Bottom line: Titers are not reliable for diagnosing not only Lyme, but other diseases as well.
I’ve heard from a cellular biologist in animal studies that Lyme is so rampant and causing antler deformities in deer that it’s referred to as deer syphilis. Interesting…. and I ask, why can’t it alter the human on a cellular level? I am proof that it can and has. If it wasn’t Lyme, then what was it that sudden stopped my cells from producing enough energy to keep my body functioning? It worked just fine before I developed “Lyme-like” symptoms. Now every single system is affected and with our “compartmentalized” medicine I have been shuffled from one specialist to another at multiple major medical centers around the country. Have been full circle 3 times with each specialty until one Dr. did the muscle biopsy and proved there was something wrong in a big way.
To respond to Ms. Kavanaugh. I think mitochondrial disorders are part and parcel of lyme but not the only problem. Auto-immunity and seguing into other medical issues ie ALS, cancers seems also to be part of chronic lyme. I think the mitochondrial disorders we are seeing in people from highly endemic areas are being inherited. We need to figure out tick borne pathogens before we are all infected and crippled. It’s a shame that our scientists do not understand the importance of research on these pathogens. We should have an area within the NIH, to specifically study tick borne pathogens. Right now Borrelia is lumped with all other spirochetes and the plethora of co-infections is being ignored. The NIAID and NIH and CDC would like a vaccine. How naive can they be ?
Why are CDC, NIH et al so clearly afraid to address tick borne diseases in a rational medically sound manner?
IMO it is all very simple MOST tick borne disease has as its root bio-weapons grade mycoplasma or mycoplasmas. CDC, NIH et al KNOW this but are politically powerless to address it even if they wanted to which they clearly do not.
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