Tuesday, 21 December 2010
Through CALDA blog here I was able to read all three of these excellent articles in The Roanoke Times.
Lost in the Woods Navigating the Chronic Lyme Debate by Beth Macy
In search of hope, facts here
Salvos launched in Lyme debate here and
The Doctor of last resort here
plus the excellent video here
One day I look forward to seeing similar articles run in our UK Media, the dearth of good investigative journalism on chronic Lyme isn't for lack of trying or lack of patient experiences.
Until then how many patients with symptoms of arthritis, neurological problems, chronic fatigue, fibromyalgia and many more health problems will ever realise that like me their symptoms were related to that tiny tick that bit them years before.
More importantly how many doctors will consider as a differential diagnosis.
Monday, 20 December 2010
This excellent Video is put together by Laurel from Dreams at Stake blog and can be found here
Thank you Laurel for another brilliantly executed work.
Laurel is one of the growing number of people I have heard of who has ME/CFS, Lyme Disease and is XMRV positive.
Here's hoping support for the Whittemore Peterson Institute will speed along appropriate treatment.
Friday, 17 December 2010
The response is from the well respected Knight Science Journalism Tracker known for it's peer review within science journalism
Titled Chicago Tribune off balance on chronic Lyme disease
'This is what happens when reporters make up their minds about a controversial story before beginning to write.'
'In short, what Callahan and Tsouderos have done is to argue that chronic Lyme disease can’t exist because the people who say it does are nuts.
A far better approach would have been to report the evidence, pro and con, and to quote the most persuasive advocates for and against chronic Lyme disease–not the least persuasive. And to give both sides equal time to speak.
(Thanks for the heads-up to Pam Weintraub, features editor of Discover Magazine and author of Cure Unknown: Inside the Lyme Epidemic.)
- Paul Raeburn'
Go to the link to the article to read the full story.here
Thanks to Pam Weintraube for alerting Knight and also for her enlightening comment on this article.
Pamela Weintraub Says: December 16th, 2010 at 6:02 pm
'Thanks for posting.
The problem, as I see it, is that these journalists have conflated two issues: One issue, a look at the predators abusing patients carrying the diagnosis of chronic Lyme disease, is a worthy endeavor.
The second, an examination of the debate over why symptoms persist after short-term antibiotic treatment, is also a worthy endeavor.
But these issues –thought interrelated because a dearth of knowledge leaves a vacuum for predators– are not the same.
In order to examine the possible reasons for chronic symptoms after treatment for Lyme disease, one would need to quote credible, university-based scientists on the range of views and interpretations.
Instead, the journalists quote scientists with one view, but when it comes to balancing that view, they attempt to do so by quoting the very criminals, predators, and crazies they are trying to expose.
The implication, of course is that these sources must provide the counterweight because there ARE no credible, university-based scientists who disagree with the contention of the article, or the experts quoted.
Of course, this is blatantly untrue –and one does not need to look far or even make many phone calls to find a range of views among credible academic experts with high visibility in the peer review.
Either these reporters started out with an agenda –and thus were satisfied to ignore like-weight experts with alternate views—or else they failed to realize these experts exist. In other words, either they were biased or they were incompetent.
And it is too bad –because an expose on predatory practices in this arena is sorely needed.
A final note: The issue of Lyme disease, in general, is confounded by co-infections carried by Lyme ticks, and by a range of Lyme disease strains, only recently described in the peer review.
Some of our top scientists now suggest these strains may present variably in terms of symptom sets, in terms of testing –and yes, perhaps even in terms of length of treatment to kill.
It is too bad that these journalists failed to attend the recent Institute of Medicine conference, Lyme Disease and Other Tick-Borne Diseases: The State of the Science, or even watch the webcast, where many of the nuances and complexities were discussed by the top experts in the world.
Features Editor, Discover MagazineAuthor, Cure Unknown: Inside the Lyme Epidemic, winner of the American Medical Writers Association award for best book, 2009'
Earier posts on the Institute of Medicine Workshop can be found here Dr Ostfeld's presentation here
Ben Luft's presentation here
Pam Weintraube's presentation here
Nat Cap Lyme Greg Skall presentation here
but so many more well worth listening to from the IOM link here
Monday, 13 December 2010
In response to various articles in the Chicargo Times and other newspapers found here
a number of patients posted their experiences with the above heading.
Blogger Lymenaide: says this:-
Do a Google search for "My Lyme Disease is not the IDSA Lyme Disease". See what pops up! Keep writing and posting your stories. Let's get the first few search pages to be filled with our stories. Keep the existing stories at the top of the list by reading them, commenting and sharing them with your friends and family.
Below is what I added to my side bar of both my blogs.
I started suffering with arthritis in mainly my large joints especially my knees 6 years ago. The symptoms varied and I remember saying that every joint was affected except my elbows to one doctor. I was told it would be hormonal and to take the usual supplements cod liver oil or glucosamine ( I would certainly recommend buying shares in the companies producing these supplements) They had no noticeable affect.
All my symptoms deteriorated significantly over a few weeks, 4 years ago. Hips shoulders and knees being the worst and I started with muscle weakness in upper arms and upper legs. I had difficulty standing and walking across a room. I was unable to walk upstairs and my husband was making plans to convert to a downstairs bedroom. I had seen 5 doctors and 3 Rheumatologists and put on steroids for Poly Myalgia Rheumatica diagnosis. I had been diagnosed with Fibromyalgia and ME/CFS.
I have X rays and scans showing signs of osteoarthritis and Rheumatoid arthritis. I have been retired early from the Civil Service having lost my job not to mention my earning potential.
My illness seemed to progress through my body not affecting the same joints left to right at the same time. I had bursitis in left hip, right hip, left elbow. I had synovial thickening in both wrists. At that time I could not lift and hold a magazine so lifting a kettle I could only do if a third full and with two hands. Each joint in my hands fingers feet and toes were affected. I had swallowing difficulties and many other symptoms. None of this describes the endless and awful pain whenever I moved or the tiredness but inability to get quality sleep.
Two years ago my GP gave me Amoxicilin for a sinus/throat/chest infection. All my arthritis symptoms improved. The course ended the symptoms deteriorated I started a second course the symptoms improved. The improvement was more significant than when I had started taking steroids. This led my GP to suspect Lyme Disease. I laughed because we do not travel abroad but she said they had had other cases in the surgery in the early stages of tick bite and Erythma Migrans rash. She said, but you have not had a bite. I said oh yes I have I had two on my ankles with rashes, March 05 this was confirmed on her computer at the time I had seen a locum doctor. My worst symptoms were waking up feeling rigid and having to painfully flex every joint in my body before struggling to get up. The only other time I had experienced this was in May 2003 during a flu like illness like no other I had ever experienced. At that time I had a bite and similar rash on my right foot which lasted like the other rashes about four weeks. I had also consulted the surgery and it was dismissed as a virus. I walked our dog daily in the woods adjacent to our house where the deer roam, prime tick area.
Thus started my very lengthy search about Lyme Disease leading me through http://www.lymediseaseaction.org.uk/ to a doctor who specialises in this illness. He confirmed my GP's suspicions. I never had a positive blood test but then they are antigen tests and there is much research that shows they are unreliable. In my case the year of steroids and many weeks antibiotics could have affected the results. So with a clinical diagnosis and following ILADS International Lyme and Associated Disease Society guidelines I continued on antibiotics for two years. Both my doctors continued to treat me despite the Health Protection Agency advising against long term antibiotics. I am now nearly 100% recovered I have no pain or muscle weakness. I can walk upstairs something I could not do for three and a half years. I can garden do house work and live a normal life. I still need to pace myself and with only a few months to 60 will not be looking to return to work.
Life is such a joy.
Sadly there is much controversy about Lyme Disease and doctors in UK are taught that it is so rare. Well where I live in Guildford I have been in contact with a dozen other people with it so perhaps not so rare as HPA would like us to believe. I am in touch with nearly 2000 other patients through a chat line Eurolyme most had been misdiagnosed with several other illnesses.
Look at UK charity http://www.lymediseaseaction.org.uk/ if you want to read more about this illness. There are many MP's taking an interest in the problems surrounding diagnosis and treatment see above charity links into a recent meeting at the House of Commons.
Thank goodness there are some thinking doctors around who have courageously treated me against opposition and I have made such a miraculous recovery albeit rather a lengthy one.
One day there will be many more people who are helped with their chronic illnesses when IDSA starts taking note of what our courageous LLMD’s are doing following ILADS Guidelines.
ME/CFS, Fibromyalgia, Polymyalgia Rheumatica, Arthritis, Bell’s Palsy, MS,MN, ALS, Parkinson’s, Alzheimer’s, Heart Block, Stroke, Psychiatric, gastric problems the list is endless. Not all suffering from Lyme Borrelia but how many are even properly assessed for it.
Monday, 25 January 2010
ME/CFS, FIBROMYALGIA, LYME DISEASE UPDATE
An update on my journey from ME/CFS, Fibromyalgia, Arthritis and Muscle weakness, Polymyalgia Rheumatica, to Lyme Disease and a cure for my illness which started in 2003.
I have details of my story on the right hand column on my blog and decided it was time to post an update.
I originally started Joanne's Cottage Garden as a record of my garden, I was able to enjoy gardening once again after an illness of 6 years. Those who followed that blog will notice my mention of my ongoing Lyme Disease symptoms, mainly in my legs.
A few months ago I started Looking at Lyme Disease blog in order to post information that interested me.
Over the last year my symptoms have continued to improve. My scariest symptom was swallowing problems which improved on Doxycycline but returned on Amoxycillin and improved again on a combination of Amoxycillin and Clarithromycin. I tried many times to reduce the Clarithromycin and always my arthritis and muscle weakness would deteriorate but by week three the worst symptom, the swallowing problems were the ones that would push me back into taking Clarithromycin again.
In November 2009 I stopped antibiotics. I still had some symptoms in knees, feet and facial tingling and twitching, I was never sure what was just muscle problems and what was peripheral neuropathies. My GP had discussed the Chief Medical Officers letter with me (details of this on Lyme Disease Action website). I had mistakenly thought she was going to refuse any further prescriptions and so decided to stop antibiotics whilst still having some in hand for emergency (Lyme patients would understand this, others not familiar with the problems getting treatment may not).
It is now week 13 since stopping antibiotics. So far my symptoms have deteriorated, weeks 4, 8 and 12 being the worst and symptoms picking up in between. Symptoms have appeared in a variable way in calf muscles, knees, wrists, feet, face and rt hip. So far I am delighted that my immune system seems to be coping and within a few days of any new symptom appearing, my immune system seems to get on top of it. This is what we are aiming for the immune system in control.
I did see my LLMD and he confirmed I still had Lyme like symptoms and at some point more or less definitely would need antibiotics again, but not just now. He advised me that many of the USA Lyme doctors would treat more aggressively and for longer. This I know, many would treat with cyst busting drugs, we discussed this and decided not to do so at present. The reason for my cycling symptoms is thought to be the dormant infection (which goes into cysts) replicating usually on a 4 weekly cycle.
So at present I am not as well as I was when last on antibiotics, fatigue being another of my problems but not the chronic fatigue that doesn't improve with rest. I am delighted not to be popping pills and delighted that generally my health is still improving so fingers crossed.
Discussing my situation with my GP she is as always very supportive and if the time comes when I need further treatment I am fortunate to have both my doctors there to support me.
I have to say that I have been very very lucky, so many Lyme Patients are far sicker than I ever have been even though there was a time three years ago when I did not want my life to go on because of the endless unremitting pain. It has been a very long and difficult recovery nearly three years of antibiotics, I suspect the 20 months of steroids given for the Polymyalgia Rheumatica Diagnosis would have compromised my immune system and made my recovery more protracted.
For now it is a joy to be pain free and no longer on any medication.
As of December2010
Sadly after a 5 month break off antibiotics my symptoms deteriorated sufficient for me to once again start antibiotics. Some of these symptoms are those described as Peripheral Neuropathies, facial, tingling and twitching, problems with vision, flashing lights and blurred vision, and tingling and numbness in legs and feet. Thankfully they responded well to antibiotics and whilst remaining on them I remain virtually 100% with only one or two remaining symptoms that have continued to improve month on month.
Sunday, 12 December 2010
Sure looks soooo simple and soooo easy to cure doesn't it.
Are all those researchers so stupid that they need to do 22000 research articles on something so simple or maybe perhaps the science on this emerging disease/s is not yet written.
Why then do IDSA believe they have a cure all on just a few weeks antibiotics?
Once again an excellent article from
Raphael B. Stricker1 and Lorraine Johnson
The Lyme disease chronicles, continued Chronic Lyme disease: in defense of the patient enterprise
please click here to read
Those with illness such as arthritis, ME/CFS, Multiple Sclerosis, Fibromyalgia, Polymyalgia Rheumatica, Neurological illness following a tick bite will find the above article very enlightening.
Saturday, 11 December 2010
Thank you Tina for all your efforts.
Link to Response from Tina J. Garcia CHICAGO TRIBUNE SACRIFICES LYME PATIENTSTO PREVENT ANTIBIOTIC RESISTANCE Click on Tribune link at top of left sidebar http://www.leaparizona.com
Mr. Gerould W. Kern,
435 North Michigan AvenueChicago, IL 60611
Re: Chronic Lyme disease: A Dubious diagnosis
by Patricia Callahan and Trine Tsouderos
Dear Mr. Kern:
I am a chronic Lyme disease patient and advocate who has struggled with Borrelia burgdorferi infection for twelve years, since 1998. The bacteria ravaged my body for six years before I was finally diagnosed and began antibiotic treatment at the end of 2004. At one point I could barely walk and could not effectively communicate due to encephalopathy, neurological and musculoskeletal involvement. I became disabled from the disease and lost my job and my home.
To this day, it has been a devastating journey, and this debilitating chronic infection caused by the bite of a tick in Arizona has profoundly altered my life. I could not find one doctor on my insurance plan who would provide treatment. Therefore, my insurance denied coverage, and my family had to pay for it. We were never able to afford the intravenous antibiotics that were recommended by my Lyme-treating physicians. The delayed diagnosis and denial of treatment extended my suffering, caused disability and has prevented a full recovery thus far. My case is not unique; thousands have reported the same lack of medical care.
I am not shy to state publicly that the main reason for the denial of diagnosis and treatment and terrible suffering that I have experienced was caused directly by the Infectious Diseases Society of America’s Clinical Practice Guidelines for Lyme Disease and the Centers for Disease Control and Prevention’s (CDC) dissemination of those Guidelines on its website.
Another reason for the medical neglect of Lyme patients is the failure of the National Institutes of Health (NIH) to conduct meaningful treatment studies. To date, the efforts of the NIH have been unconscionably weak in this area. Studies should have been conducted a long time ago to determine the efficacy of long-term combinations of antibiotics (months to years, as is provided for tuberculosis and leprosy infections), in search of an effective treatment protocol to alleviate the widespread suffering and loss of productivity experienced by those who have developed chronic Lyme infection, due to lack of timely diagnosis and treatment.
Of particular significance, the NIH study performed by IDSA guideline author, Mark Klempner, M.D. was a study that was analyzed statistically by statistical scientist Alison Delong and found to be flawed.
It would be considered inhumane to bring up the issue of antibiotic resistance when referring to patients receiving long-term treatment for tuberculosis or leprosy, both of which are bacterial infections. Leprosy and Lyme disease share the ability to damage the nervous system.
Why then, does the Chicago Tribune find it acceptable to publish an article that encourages the denial of long-term antibiotic therapy to Borreliosis patients, based upon the premise that such treatment causes antibiotic resistance? Does the Chicago Tribune endorse the practice of sacrificing Lyme disease patients, who are afflicted with neurological damage from embedded infection and resulting persistent inflammation, on the altar of antibiotic resistance, in an effort to save antibiotic use for others?
Professor Garth Nicolson, a microbiologist who has studied Bb, stated that the antibiotic resistance argument is “particularly lame.” He explained that another reason for antibiotic resistance is the INADEQUATE antibiotic treatment of virulent pathogens, such as Borrelia burgdorferi, the bacterium that causes Lyme disease. If you have ever received a prescription for antibiotics from the pharmacy, you may recall that the sticker on the side of the bottle recommends that all the medication be used according to the instructions – that all of it should be taken by the patient. This recommendation is made because UNDERTREATMENT of bacterial infections causes antibiotic resistance.
Therefore, each time a physician adheres to IDSA treatment guidelines for Lyme disease, they are contributing to the antibiotic resistance of Borrelia burgdorferi. Each time a Lyme disease patient is UNDERTREATED, Bb undergoes antigenic variation. In other words, it changes to evade the immune system and antibiotics. This is another way that the pathogen persists in the tissues (not only the blood) of those who are infected.
In addition, there is no definitive test that proves that Bb is eradicated with the recommended treatment set forth by the CDC and IDSA. Numerous tissue samples would need to be collected and tested to determine this, as Bb does not predominantly reside in the blood, at times rendering antibody tests inconclusive. In order to eradicate Bb from the brain, antibiotics must be administered which cross the blood brain barrier to get into the cerebrospinal fluid, and not all antibiotics are able to do this.
The good news for me is that I have made significant progress through the use of intermittent antibiotic therapy (oral and intramuscular injections) for the past six years. That’s a lot of antibiotic, but the antibiotics have allowed me to regain function. I am grateful for the progress I have made, and my hope is to get to a point where I can go back to work as a functioning and productive member of society. However, I am now suffering from small vessel disease in my brain and multiple sclerosis-type symptoms which incapacitate me periodically.
I was selected by Connecticut Attorney General Richard Blumenthal and the Infectious Diseases Society of America (IDSA) Lyme Disease Review Panel to testify on behalf of the worldwide Lyme disease patient community at a legal hearing held in Washington, D.C. on July 30, 2009.
As was reported in the Tribune’s article, the hearing was the result of an antitrust investigation of the IDSA and its Lyme Disease Practice Guideline authors, which was conducted by the Connecticut Attorney General.
It was a privilege to speak on behalf of thousands of people suffering from chronic Lyme infection. The outcome of the hearing and the extensive review of submitted medical research, that clearly showed the existence of persistent Lyme infection despite antibiotic treatment, was a rubber stamping of the current IDSA Guidelines, with no immediate changes recommended by the Review Panel. This decision has served the insurance industry by guaranteeing the continuation of diagnosis and treatment denials, as insurance companies base their denials on the IDSA Practice Guidelines for Lyme Disease.
Although the information I am submitting to you is contrary to what was reported in the Chicago Tribune, it is the truth about the medical neglect that Lyme disease patients are experiencing. Lyme disease patients have struggled for more than thirty-five years, due to a complicated web of issues involving inadequate testing methods, ineffective treatment recommendations published by the IDSA and the failure of the NIH and the CDC to perform new and utilize existing patient-centered research.
By definition, screening tests should have at least 95% sensitivity. The ELISA screening test that is recommended by the CDC lacks such sensitivity and falls short in its specificity, thereby missing detection of a significant number of cases. Such a scenario would be unacceptable for HIV, syphilis, hepatitis, tuberculosis, heart disease, diabetes and cancer; it is, therefore, unacceptable for Lyme infection, also.
During the Lymerix vaccine clinical trials, chief Investigator Dr. Allen Steere, did not use the ELISA because of its lack of sensitivity and specificity.
“ELISA’s are commercially available but lack sufficient sensitivity and specificity for use in efficacy trials…The CDC criteria, however, were developed as a surveillance tool, which frequently necessitates a compromise between sensitivity and specificity to reach the optimal surveillance objective….The CDC criteria were therefore deemed to be inadequate for the purpose of conducting a pivotal efficacy trial.”
It is, therefore, obviously inappropriate for the ELISA to be used as a screening test in the clinical setting, for if and only if the ELISA is positive, are patients ”allowed” to progress to the next level of testing -- the Western blot.
“This study confirmed in the reference and research laboratory setting the previously documented problems with accuracy and precision of serodiagnostic tests by using WCS antigens of B. burgdorferi (4-11). The study confirmed that a serious disparity existed between the test results obtained by CDC and those obtained by academic reference centers with the best testing performances. These results guided corrective action and led to the adoption by CDC and ASTPHLD of a two-test approach to serodiagnosis (23), which forms the basis for the future national standardization of Lyme disease serologic testing methods.“
How many hoops must patients jump through to receive diagnosis and treatment? In the case of Lyme disease, half of the patients cannot make it through the first hoop (the ELISA), and therefore, never get the chance to be tested by way of the second (Western blot).
This testing recommendation leaves approximately half of all patients with no diagnosis or treatment -- that is certainly medical neglect. Due to its fallibility, the CDC’s serodiagnostic testing recommendation for use of the ELISA as a screening test for Lyme disease should be reassessed by an unbiased committee not associated with the CDC or individuals involved in creating the Dearborn recommendation (which would include authors of the IDSA Practice Guidelines that were investigated by the Connecticut Attorney General).
Published research has demonstrated that Borrelia burgdorferi uses antigenic variation to evade the host’s immune system, thereby ensuring its survival and causing persistent infection. Bb has the ability to morph into various forms. It is commonly recognized as a corkscrew-shaped spirochete; however, it can change into a cyst form, a cell-wall-deficient form, a granular form and a bleb form and protects itself with a biofilm that sequesters it from attack by the immune system and antibiotics.
Published research indicates that “the interplay between the host and invading spirochetes results in a cascade of signaling events that B. burgdorferi can use to facilitate persistent infection.”
Uncertainty about the existence of chronic Lyme infection is a direct result of misleading information and opinions that have been circulated by the IDSA Guideline authors who were investigated by the Connecticut Attorney General, along with other spokespersons for the CDC. This is a small group of researchers who have, for many years, continually received a large portion of the federal research funds allocated for Lyme disease. Their unfounded statements that chronic Lyme infection does not exist directly contradict the research they have already published in which they did, indeed, demonstrate persistent infection. In fact, there is no uncertainty about chronic infection among patients and the physicians who actually treat patients with chronic Lyme disease.
Please see the research excerpts included at the end of this correspondence.
If patients do not receive diagnosis in the early stage, the disease will develop into a chronic, relapsing/remitting illness that becomes even harder to diagnose and treat. Attempting to clear an embedded infection (one that has persisted for several years), with an early-stage, short-term treatment protocol as has been recommended by the IDSA, is ludicrous.
Borrelia burgdorferi colonizes all the organs and tissues of the body, and due to its antigenic variation, its biofilm and its ability to morph into evasive forms, repeated courses of various antibiotics are needed to fight the embedded infection.
In the hurried world of practicing clinicians, it is easy for the line between acute and chronic treatment recommendations to appear nebulous, and those who espouse the CDC/IDSA party line are quite adept at smudging the line that should separate acute from chronic treatment. In fact, the Lyme Medical Cartel has continually used the media to accomplish their despicable dissemination of false medical information. However, if one reads the published literature and makes the crucial distinction between the research on acute and the research on chronic Lyme infection, one will see that there actually is no controversy at all. The controversy has been fabricated by the Lyme Medical Cartel.
Patients are in desperate need for government healthcare agencies, such as the CDC, to utilize research that has already demonstrated persistent infection. You will hear so-called “Lyme experts” make statements that chronic Lyme disease does not exist. You will also hear them reference terms they coined – Post Lyme Syndrome (PLS) and Medically Unexplained Symptoms (MUS). There is no proof of the existence of either PLS or MUS in relation to infection from Borrelia burgdorferi; these are merely opinions passed off as consensus.
Once again, much of the research on persistent infection has been published by the individuals who are now calling persistent infection “Post Lyme Syndrome” and “Medically Unexplained Symptoms “ They are, therefore, contradicting their own research. Their contradictions, published in the IDSA Practice Guidelines, have resulted in the wasteful use of federal research funds, caused insurance denials of treatment and the medical neglect of suffering patients.
In my opinion, the NIH and CDC have continually wasted precious funding allocated by Congress, which should instead be utilized for patient-centered research, not pet projects of individuals investigated for their financial conflicts of interest related to Lyme vaccines, patents for diagnostic tests and consulting arrangements with insurance companies.
The General Accounting Office (GAO) previously investigated the matter of research funds for Lyme disease and determined that the CDC did, in fact, spend appropriated funds on Lyme disease research. This determination, although accurate, did not expose the research monopoly that exists between the CDC and the “most powerful IDSA panelists” who authored the IDSA Practice Guidelines for Lyme Disease. Yes, they funded Lyme research, but the majority of the funds have been granted to members of the Lyme Medical Cartel, who in my opinion, take their marching orders from the CDC.
Connecticut Attorney General Blumenthal revealed the following in his May 1, 2008 Press Release:
"The IDSA guidelines have sweeping and significant impacts on Lyme disease medical care. They are commonly applied by insurance companies in restricting coverage for long-term antibiotic treatment or other medical care and also strongly influence physician treatment decisions.
Insurance companies have denied coverage for long-term antibiotic treatment relying on these guidelines as justification. The guidelines are also widely cited for conclusions that chronic Lyme disease is nonexistent.”
"This agreement vindicates my investigation -- finding undisclosed financial interests and forcing a reassessment of IDSA guidelines," Blumenthal said. "My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists. The IDSA's guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science.”
Blumenthal added, "The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion.
In today's healthcare system, clinical practice guidelines have tremendous influence on the marketing of medical services and products, insurance reimbursements and treatment decisions. As a result, medical societies that publish such guidelines have a legal and moral duty to use exacting safeguards and scientific standards.”
Cancer patients are given the choice of chemotherapy with dangerous drugs that not only destroy cancer cells, but cause extensive damage to the rest of the body, as well. Despite the risks associated with cancer chemotherapy, cancer patients are given additional treatment when they relapse, and physicians specializing in cancer therapy are not discouraged from doing so.
Lyme disease patients do not relish using antibiotics for prolonged periods, just as cancer patients do not enjoy undergoing chemotherapy. However, at the present time, antibiotic therapy is the only treatment that provides relief and improvement in symptoms, and the choice of accepting the risks of intravenous infusion of antibiotics should rest with the patient and their treating physician, not the IDSA, which the majority of Lyme patients view as a pseudo-paternalistic medical dictatorship.
For clarification, the majority of Lyme patients do not pursue the dangerous treatments described in the Tribune’s article. It was, therefore, misleading to portray the Lyme patient community as ill-informed consumers. Veteran Lyme patients are quite knowledgeable of the disease they are infected with and most can talk circles around medical doctors who have no experience treating the disease. It is simple reasoning to come to the conclusion that the majority of IDSA member physicians fall into this category, as they deny the existence of the disease.
Therefore, if ID physicians deny the existence of Lyme disease and refuse to treat patients, they don’t have any experience with the disease, correct? So, how can they refer to themselves as Lyme experts? Such a physician would actually be considered a charlatan. The IDSA mantra that chronic Lyme disease does not exist is the blindfold that allows these sheepish IDSA member physicians to fall off the cliff into an abyss of ignorance and arrogance.
Research has demonstrated the remitting and relapsing nature of Lyme disease infection. It is, therefore, inhumane to deny Lyme patients access to long-term antibiotic therapy that is legally prescribed by licensed physicians. If Lyme disease patients are willing to accept the risks of such treatment in lieu of a chronic, debilitating, infectious disease, insurance companies should provide coverage for such treatment and not shirk their responsibility based upon the IDSA Practice Guidelines – Guidelines that were written by those who, at the same time that they publish guidelines for use by the insurance industry, they also serve as insurance consultants and expert witnesses in medical board prosecutions against physicians who actually have experience treating the disease. Now that’s a story your journalists should investigate and publish.
Lyme disease patients expect insurance companies to cover long-term antibiotic therapy, if such therapy is recommended by their treating physicians. In the clinical setting, Lyme disease patients and treating physicians have consistently reported evidence of in utero transmission and suspect sexual transmission, as well. Due to the fact that Borrelia burgdorferi has been found to live in frozen blood for up to eight months, transmission via our nation’s blood supply should also be studied and given serious consideration.
Studies on such modes of transmission have not been adequately pursued. I have strongly urged that such research be funded and performed immediately, as our failure to address these important issues of transmission of Lyme disease, a spirochetal disease that is similar to syphilis, may be jeopardizing public health of and perpetuating the pandemic.
The Lyme patient community has requested assistance from the CDC and the IDSA for many years, but patients have been either ignored or publicly ridiculed, the latter being done by the Chicago Tribune in the Callahan/Tsouderos article. Thus the need for me to write this lengthy essay as a public service.
The Lyme patient community no longer relies upon the CDC or the IDSA to be the guardians of our health, as the research and programs that are funded and performed by them and the clinical practice guidelines that are published and disseminated by them are not “patient-centered.” Nor is the research that demonstrates the existence of persistent infection utilized by the CDC and IDSA for the benefit of patients.
Instead, the research is contradicted, or simply ignored, in favor of personal agenda-promoting opinions and manufactured disease parameters. As revealed formerly in the CT Attorney General’s Press Release, these financial conflicts of interest were exposed during the antitrust investigation of the IDSA and its 2006 Lyme Disease Practice Guideline authors. Unfortunately, the Attorney General was not able to extend his investigation into the bowels of the monopoly -- the CDC and its Division of Vector-Borne Infectious Diseases, and possibly, the United States Public Health Service, which if you recall, led the Tuskegee Study of Syphilis from 1932 to 1972.
Despite extensive funding for Lyme disease research, the healthcare needs of Lyme disease patients have been neglected for too long. Precious funds are wasted by those who place their own interests in developing a Lyme vaccine and marketable test kits above the health needs of patients.
Clinical practice guidelines are being written and published to serve the personal agendas of the authors and those who have a stake in the guidelines, barring the most important stakeholders – the patients.
The irresponsible behavior of the IDSA prior to, during and following the investigation and review process of the IDSA Practice Guidelines for Lyme disease, in the form of fraudulent public statements that chronic Lyme infection does not exist and their continued dissemination of other false information, such as,
“no convincing biologic evidence for a Lyme infection that persists”
has caused the majority of their infectious disease member physicians to deny diagnosis and treatment to chronic Lyme disease patients.
The CDC plays a leading role on the world stage of health. The CDC provides a link to the IDSA Practice Guidelines for Lyme disease on its website, and this action has resulted in diagnosis and treatment denial to chronic Lyme disease patients in the U.S. and in other endemic countries around the globe.
At the recent October Institute of Medicine forum on the state of the science of Lyme disease, the patient community suggested that funding be given to other researchers not involved in the Lyme Medical Cartel research monopoly. This monopoly is the one that Willy Burgdorfer, Ph.D., discoverer of the Lyme disease bacterium, referred to when he made the following statement in the film “Under Our Skin”:
“The controversy in Lyme disease research is a shameful affair. And I say that because the whole thing is politically tainted. Money goes to people who have, for the past 30 years, produced the same thing—nothing.
Serology has to be started from scratch with people who don’t know beforehand the results of their research.”
With regard to the other article in the Chicago Tribune entitled “Behind the curtain on our investigation into dubious medicine,” Trine Tsouderos stated the following:
“Working at a newspaper devoted to digging deep on behalf of our readers, we believe it is our mission to develop well-researched stories as an antidote to all the unfiltered and unreliable information on the Internet. We do that by investing time and resources into stories like these."
Allowing the current Tribune article, with its many flaws, to stand as a factual reference and an example of a well-researched story, is irresponsible journalism that continues the damaging medical neglect of thousands of patients who have been diagnosed with Lyme disease in North, Central and South America, Europe, Asia and Australia. This is an infectious disease pandemic that is disabling people worldwide. A more knowledgeable reflection of the journalists would be cast, if Ms. Callahan and Ms. Tsouderos would cease parroting the following Lyme Medical Cartel misinformation –
“infected ticks live mostly in Minnesota, Wisconsin and the Northeast.”
Many patients who have been diagnosed with Multiple sclerosis, ALS, Parkinson’s, Alzheimer’s, rheumatoid arthritis, fibromyalgia, chronic fatigue and lupus have subsequently been diagnosed with and treated for Borrelia burgdorferi infection. The reason these diagnoses are made initially is because chronic Lyme infection can manifest as all of these conditions.
Published medical research has also shown that Borrelia burgdorferi can cause non-Hodgkin’s lymphoma. If you share this bit of information with Dr. Joseph Jemsek’s former patient, Phillip Moore, Mr. Moore may find it interesting and pertinent.
A more responsible article would include this information, as it would provide motivation to a very large number of patients, who are diagnosed with these conditions, to seek a possible infectious etiology and treatment that may improve their health. If you figure it out mathematically, the Chicago Tribune holds in its media hands, a way to possibly help a substantial number of people by researching and publishing an article around this information. The choice is yours.
Therefore, on behalf of suffering patients, I request that the Chicago Tribune and its investigative journalists, Patricia Callahan and Trine Tsouderos, publish a follow-up article that incorporates the information I have provided in this correspondence. Such a follow-up article would demonstrate to the public that the Chicago Tribune should not be held accountable, through its complicity with the Lyme Medical Cartel, of perpetuating the inhumane medical neglect of Lyme disease patients that has occurred for more than thirty years.
If you read the Tuskegee Timeline on the CDC website, you may be surprised at the similarities between the Tuskegee Study of Syphilis that was inhumanely carried out by the United States Public Health Service / condoned by the CDC and the denial of diagnosis and treatment for those infected with Borrelia (a cousin to syphilis). There’s another story for you, if your investigative journalists have the courage to tackle it.
The journalist who broke the story of the Tuskegee Study in the 1970’s helped bring closure to that inhumane medical “study” that resulted in a public apology from President Clinton and a financial settlement with the victims and their families.
Thank you in advance for your consideration of the important issues and information I have provided, and I anxiously await your response.
Tina J. Garcia
Cc: Deborah Shelton, Health Editor
Patricia Callahan, Investigative Journalist
Trine Tsouderos, Investigative Journalist
Excerpts from Research Published by IDSA Lyme Disease Guideline Authors
With regard to the 2006 14-member IDSA panel and the review of research by those IDSA guideline authors, it is evident that they did indeed deem some Lyme-related research as not meeting “rigorous scientific standards.” It is astounding that some of the research the IDSA panel members chose to ignore was their very own. The IDSA Review Panel also ignored the guideline authors’ research and more than 1600 pages of research and analyses submitted by the International Lyme and Tick-Borne Diseases Society (ILADS).
Here are but a few examples of the 2006 IDSA Guideline Authors’ research:
This is an abstract from a published article co-written by Allen C. Steere, one of the authors of the 2000 and 2006 IDSA Treatment Guidelines, in the New England Journal of Medicine, Nov 22; 323(21):1438-44, which refers to a study of Borrelia burgdorferi:
“These chronic neurologic abnormalities began months to years after the onset of infection, sometimes after long periods of latency, as in neurosyphilis…The typical response of our patients to antibiotic therapy supports the role of spirochetal infection in the pathogenesis of each of the syndromes described here…The likely reason for relapse is failure to eradicate the spirochete…This last article is one of many studies that show continuing symptoms are most likely due to persistence of the spirochete.”
The following is from another published article by Dr. Allen C. Steere:
Steere, AC., 1995, Musculoskeletal manifestations of Lyme disease. American Journal of Medicine, 1995, 88:4A-44S-51S.
“…a 1-month course of oral antibiotics may not always eradicate viable spirochetes.”
Also from Steere:
Steere, AC., et al., 1994, The long-term clinical outcomes of lyme disease. A population-based retrospective cohort study. Annals of Internal medicine, 121(8)560-7.
“Ten of the 38 patients with Lyme disease reported relapses within 1 year of treatment…and had had repeated antibiotic treatment (5 patients with intravenous ceftriaxone). …Patient 4, in addition, had had second degree atrioventricular block with acute Lyme disease that resolved with penicillin treatment. Her irregular rhythm recurred 2 years later, resolved temporarily with ceftriaxone treatment, but progressed to complete heart block requiring a pacemaker. …Patient 12…was treated with 2 weeks of parenteral penicillin. She later developed a progressive speech disorder, bradykinesia, and abnormal ocular motor function. Magnetic resonance imaging of the brain showed scattered white matter lesions in the hemispheres and pons…she was re-treated with 2 weeks of parenteral ceftriaxone in 1989 that had no effect on her neurologic symptoms. During the time of observation, this patient died. At autopsy…[using] Dieterle silver stain, a spirochete was present in the cortex and another was exterior to a leptomeningeal vessel.”
From Raymond J. Dattwyler, another author of the 2000 and 2006 IDSA Treatment Guidelines:
Dattwyler, RJ., et al., 1988, Seronegative Lyme disease. Dissociation of specific T-and B-lymphocyte responses to Borrelia burgdorferi. New England Journal of Medicine, 1988, 319(22):1441-6.
“We studied 17 patients who had presented with acute Lyme disease and received prompt treatment with oral antibiotics, but in whom chronic Lyme disease subsequently developed.”
This scientific published research by Drs. Steere, Dattwyler and Klempner, members of the IDSA panels, for some odd reason does not meet the IDSA’s “rigorous scientific standards” and does not support the IDSA hypothesis that chronic Lyme disease does not exist.
The IDSA Guideline authors demonstrated that chronic Lyme disease is caused from persistent bacterial infection. So, they not only ignored a worldwide body of published research, but they ignored their very own research in the formulation of the 2000 and 2006 IDSA Guidelines for the treatment of Lyme disease.
Monday, 6 December 2010
ME/CFS patients are no longer invisible, no longer silent. From their beds and wheelchairs, many disabled patients worked together to place the first-ever ME/CFS ad in The Washington Post.
The recent studies show that more research funding is needed to prevent the next mother, father, or child from becoming chronically ill with this devastating disease.
Time for the US and UK governments to take the following actions:
Provide more funding for biomedical ME/CFS research;
Develop a national research and clinical network, as recommended by the federal Chronic Fatigue Syndrome Advisory Committee;
Provide funding for XMRV/MLV clinical research in order to sustain momentum;
Protect the blood supply and explicitly prevent ME/CFS patients from donating blood;
Adopt the Canadian Consensus Criteria for diagnosis and research of ME/CFS;
Bring the Centers for Disease Control website in line with the recommendations of leading researchers and practicing physicians in the field of ME/CFS.
The above from ME/CFS World Wide Alliance here
Make sure you watch the Videos What about ME on the right of the above link.
Further press release here
So much of what is happening with ME/CFS denial parallels a similar situation with Lyme Disease denial and there are many patients who are now being found infected with both Lyme Disease and XMRV.
“Lyme moms” and his own patients “taught me more in two years than I’d learned practicing orthodox medicine in twenty.”
Dr. Daniel Cameron, former president of the International Lyme and Associated Diseases Society, estimated a chronically ill Lyme patient’s annual medical costs for treatment of Lyme and co-infections to be $16,200, bringing the total cost to Virginians to about $67 million annually.
Virginia Governor Bob McDonnell’s newly appointed Lyme Disease Task Force held an expert testimony hearing Tuesday, November 30 at Patrick Henry College in Purcellville. for more information click here
Of the 5 doctors and 3 Rheumatologists I saw the biggest problem was that they did not listen to me describing my symptoms.
One Professor of Rheumatology who works at our top London Hospital examined me. He established that I had bursitis in my right hip although two years earlier my local Rheumatologist established I had bursitis in my left hip, infact there was little to choose between the pain in both hips throughout that two year period.
The Prof. also established I had problems with hips which he said was osteo arthritis they were very painful when he manipulating my legs. (since long term antibiotic treatment they are now completely recovered no pain no signs of arthritis or stiffness)
He examined my shoulders, ankles and knees which were also painful and said there were signs of arthritis.
I had been referred to him by my GP because I had arthritis in virtually every joint and muscle weakness in many muscles. I had been on steroids 20 months for Polymyalgia Rheumatica diagnosis but when given antibiotics for a chest infection my arthritis and muscle weakness significantly improved and led GP to suspect Lyme Disease. ( her computer confirmed times I had visited the surgery with bites, rashes, summer flu' and migrating arthralgias)
This Prof. was recommended to GP by the 'expert' at HPA as being someone with an interest in Lyme Disease.
He examined my wrists last and his comment to me was 'what have you done to sprain your wrist?'
I think at that point I realised I was wasting my time with him he clearly was not listening, I had said that I had pain and stiffness in virtually every joint many of which he had already confirmed so why when he got to my wrists did he question if I had damaged them somehow?
He said that the blood tests for Lyme being negative he was assured by the 'expert' at HPA meant I did not have Lyme Disease. ( This was so clearly a false premise as I had been on steroids for 20 months which suppress the immune response and that is what is measured with a Lyme Disease test the immune systems ability to produce antibodies. Since having access to the Internet the abundance of research available shows that these tests so relied upon by our doctors are missing at least 50% of cases.)
The Prof.'s diagnosis was Lyme Neurosis from reading too much on the internet about Lyme Disease. (Little did he know at that time I did not have access to the Internet and it was in fact my GP who suspected Lyme Disease. ) He wrote this to GP and said I had ME/CFS and should try antidepressants and CBT.
Thank goodness my GP had listened to my symptoms had seen my incapacity and many signs of inflammation and improvements and she continued to treat me following ILADS guidelines and most importantly I continued to improve in health.
Until the science which is still emerging in the field of tick borne illness is more widely disseminated amongst our doctors it is important to do our own research so we can best advocate for what treatments help us.
Friday, 3 December 2010
Crowded conditions such as those in cells can affect proteins’ structure, function, and activity
Full text here
'The most dramatic example of shape change in a nonspherical protein that Wittung-Stafshede has studied, in collaboration with Cheung, is the borrelia protein VlsE, which is involved in Lyme disease. Under crowded conditions, this protein changes its shape from elongated to spherical, exposing an antigen in the process (Proc. Natl. Acad. Sci. USA, DOI: 10.1073/pnas.0803672105).
The sometimes-dramatic changes that proteins undergo in crowded conditions raise the question of just how relevant are all those years of work in dilute solutions.'
and this without even considering interactions between other micro organisms!
Wednesday, 1 December 2010
In 2009/10, there were 14,093 samples submitted and the number of positives that year was 867.
That is 6%.
The above if analysed closely is rather shocking.
The figures relate to samples tested in England and Wales because Scotland having a separate HPA keep separate figures. An earlier post about the figures is here
These above samples relate to the second of a two tier testing protocol.
So in general all these 14,093 samples from patients will have been sent by their doctors because they are suspected of having Lyme Disease.
In essence doctors consider Lyme Disease to be so rare in the UK because that is what they are taught at Med school.
The experience of many patients is that doctors are reluctant to consider Lyme Disease even when patients present with a Bulls Eye rash, the Hall Mark of Lyme Disease.
If in fact a doctor considers the possibility of Lyme Disease the initial test is the Elisa, which by many doctors experienced in treating Lyme Disease is considered next to worthless because of it's false negatives and false positives.
However if a patient gets a positive Elisa then eventually, if they are lucky and their sample does not get lost( which seems to happen not infrequently) their samples are forwarded to the Lyme reference unit at Southampton for the final test the Western blot, of which the above figures relate to.
The HPA constantly say that the Western Blot is the best available test but what they fail to say is that there is a considerable body of research which shows the problems over the Western blots which can in fact miss up to 50% of cases ( Steven Phillips presentation to IDSA review panel is a useful reference for this where he presents 25 studies on seronegativity and persistent infection here and here as well as other presentations from ILADS website here ).
Even the makers of the test kits Trinity Biotech say
"B. burgdorferi strains exhibit considerable antigenic variation. Patients often develop early antibodies to the flagellar antigen which can be cross reactive. Patients in the early stage of disease and a portion of patients with late manifestations may not have detectable antibodies. Early antimicrobial treatment, after appearance of EM may lead to diminished antibody concentrations. Serologic tests have been shown to have low sensitivity and specificity and, therefore, cannot be relied upon for establishing a diagnosis of Lyme disease (6,7,8). The Second National Conference on Serological Diagnosis of Lyme disease (1994) recommended the use of a two-tier test system for Lyme serology in which positive and equivocal samples from a sensitive first-tier test must be further tested by a more specific method such as Western blot (second tier). Positive results in the second tier test provide supportive evidence of exposure to B. burgdorferi which could support a clinical diagnosis of Lyme disease but should not be used as a criterion for diagnosis (9). "
This information is not being relaid back to our doctors.
So what of those 14093 less 867 = 13226 patients?
Are they still struggling with symptoms which have now become chronic?
Have they like me and many others been dismissed as having Fibromyalgia, ME/CFS, an imaginary all in your head diagnosis, or worse some neurological or Psychiatric disorder and treated on palliative drugs when perhaps antimicrobial therapy would have been more appropriate?
What of the many more patients who failed the initial Elisa and never got to have a Western blot?
What of the many patients who never suspected their illness could be the result of a tickbite or whose doctors never suspected Lyme Disease?
What of the many other tick borne illnesses that are rarely ever tested for here in the UK?
Will our UK 'expert' open her mind and start to redress the problems after listening to the presentations at the recent Institute of Medicine-
A Workshop on the Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-borne Diseases: the Short-Term and Long-Term Outcomes here
her presentation and links to the conference can be found here
or will doctors remain ill informed and patients remain without adequate care?
Until better tests can be found patients need better clinical diagnosis.