Lyme disease

16 petitions

Update posted 4 days ago

Petition to U.S. House of Representatives, U.S. Senate, New Hampshire State House, New Hampshire State Senate, New Hampshire Governor, The US Senate, Beth Bell, MD, Sylvia Burwell, Dr. Tom Frieden, Rima Khabbaz

Calling for a Congressional investigation of the CDC, IDSA and ALDF

We are experiencing a health crisis here in New Hampshire and across the country with the growing epidemic of Lyme disease. A number of legislators have personally been affected and have introduced legislation to address this problem. Here are just a few recent examples. Massachusetts Representative David Linsky: “The occurrence of Lyme disease has reached near epidemic proportions in Massachusetts. Virtually every family in Massachusetts has been affected by Lyme disease in some way. Lyme disease is a public health crisis in the Commonwealth.” Read more… Connecticut, Rhode Island, New York Senator Richard Blumenthal: "Today for me culminates more than a decade of work and probably a decade more, because I've seen firsthand the devastating, absolutely unacceptable damage done by Lyme disease to individual human beings, Connecticut children and residents whose lives have been changed forever as a result of Lyme disease” Read more…. New Jersey, Pennsylvania Congressman Chris Smith: "It seems everywhere I go, someone comes up to me to talk about how Lyme disease has severely impacted their lives or someone they know," Read more… Virginia Virginia Governor’s Task Force Chair Michael P Farris, Esq: "Doctors here in Virginia are committing malpractice by saying the ELISA test is sufficient." Read more… Texas Sen. Harris says he was severely affected by the disease, but “got a lucky break.” His doctor, constrained by a disciplinary board that limited antibiotic use for tick-borne illness to 1 month or less, arranged for 17 physicians to take turns writing prescriptions for Sen. Harris’s treatment. Read more… Two HoustonTexas physicians tested their chronically ill patients for Lyme disease via CDC Western blot criteria finding all patients positive for the infection in a state where the prevalence of Lyme infected ticks is only about 1-2%. “No history of bull’s-eye rash or illness following tick bite was reported by these patients.” The CDC defines “Lyme disease” exclusively as a zoonotic illness. Congenital and gestational transfer cases have been disregarded for reasons not evident to us”. Read more… Congenital Transmission of Lyme: 28 Peer-Reviewed Studies After spending four years on this subject the following statement from a physician on the front lines treating the late stage Lyme epidemic for a quarter century rings true: “In the fullness of time, the mainstream handling of chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government and virtually the entire insurance industry have colluded to deny a disease.” We have studies proving persistent infection after antibiotic treatment for mice, dogs, ponies, monkeys, cows, iris biopsy, and ligamentous tissue but if you perform a simple Yahoo search for the following statement, “There is no convincing scientific evidence that chronic Lyme exists” you will find the top search results are connected to “elements of academic medicine” involved in the denial of the late stage Lyme epidemic. Persistent Lyme infection: 273 Peer-Reviewed Studies Circular reasoning: "Suppress all evidence and then proclaim there is no evidence" “One way to stop an epidemic is to redefine it by narrowing the disease's diagnostic criteria so tightly that it's hard for any chronically ill Lyme patient to fit the profile and obtain insurance reimbursement.” Read more… The following CDC letter (Dec 1996) addressed to former Senator Alfonse D’Amato promising to inform the medical community that the CDC’s Lyme case definition was created for reporting purposes only and not intended for clinical diagnosis is yet another failure on the part of the CDC to follow up on their responsibilities. Countless numbers of Lyme patients have been denied treatment and insurance reimbursement as a result of the restrictive case definition.  Read more… Jan 2004 testimony from Paul Mead, M.D., M.P.H. Medical Epidemiologist from the CDC’s Division of Vector-Borne Infectious Diseases: “No surveillance case definition is 100% accurate. There will always be some patients with Lyme disease whose illness does not meet the national surveillance case definition.”  Read more… Seronegativity in Lyme borreliosis: 103 Peer-Reviewed Studies There has been a combined effort on the part of the CDC, IDSA and ALDF to use the media for propagating the Lyme disease disinformation campaign following Chomsky's propaganda model. They have used Medscape, Family Practice News, The New England Journal of Medicine, The Lancet Infectious Diseases and now The American Heart Association to spread the disinformation. This deliberate campaign is aimed at purposely confusing our medical community to keep case numbers artificially low by omitting the late stage of the disease entirely as there is absolutely no medical training whatsoever for the later stages of this disease (Willful Ignorance) so patients are often ping ponged though the medical community for years or decades before obtaining a late stage Lyme diagnosis. Nine Steps to Deny an Epidemic on a National Level 101 Letter to the editor of Clinical Infectious Diseases questioning the validity of Dr Alan Steere’s research. Read more…. Letter to the editor of Clinical Infectious Diseases questioning the validity of Dr Gary Wormser’s research. Read more…. Dr Alan MacDonald’s letter to the editor of Clinical Infectious Diseases questioning the reality of the abstract by Lantos, Auwaerter, and Wormser: Read more….. Agenda-driven bias:  “People with these types of agendas may be more likely to abuse meta-analysis due to personal bias” NEJM editor: “No longer possible to believe much of clinical research published” When “evidence based medicine” has been spun to fit bias agendas and the patient voice has been intentionally ignored who investigates the dishonest science? Email message sent to the editors of the publications listed above announcing this petition. Read more… It’s all about the VACCINE It has become blatantly obvious that the CDC will go to great lengths to insure that Lyme disease remains within its narrow definition in order to fit the vaccine model. Chronic Lyme does not fit any vaccine model.  The CDC has long known about the virulence and persistence of this spirochete focusing on a vaccine as the cure-all to this world wide epidemic. The late stage/chronic Lyme community has become collateral damage for a vaccine market in the course of a government sponsored initiative as Baxter’s phase III clinical trials are underway. The CDC has aligned itself with institutions/researchers with a bias against persistent infection and has misused its authority by inappropriately allotting government funds to Mass General Hospital (Dr Alan Steere) and New York Medical College (Dr Gary Wormser) as identified in the following communications. Read more…. The Principle Investigators of the two previous Lyme vaccines: Allen C. Steere for SmithKlineBeecham's LymeRix and Gary Wormser for Connaught's vaccine (which never made it to market) have conceptualized a disease that would enable vaccine development. The one-size-fits-all Lyme treatment guideline (lead author: Gary Wormser) matches the conceptualized disease. A preventive vaccine for Lyme disease would not satisfy the FDA if a chronic persistent infection and seronegative disease exist. Post-treatment Lyme disease syndrome is simply a fabricated medical condition disguising treatment failure. Seronegativity in Lyme borreliosis: 103 Peer-Reviewed Studies It remains questionable that a Lyme disease vaccine is practical for an infection that produces a lack of immunological memory (unlike Measles, Mumps etc.) so the Wormser study fabricating a six year strain-specific immunity makes perfect sense for the marketing/acceptance of such vaccine as identified in a letter to Editor in Chief, Ferric C. Fang, M.D. Infection and Immunity.  Read more… The producers of the documentary, “Under Our Skin,” submitted a Freedom of Information Act (FOIA) request to investigate possible conflicts-of-interest of three Centers for Disease Control (CDC) employees who control public health policy for Lyme disease. (Barbara Johnson, Paul Mead and David Dennis) That request was finally fulfilled (May 2012) from the Department of Health and Human Services (five years later!). The information received is highly redacted with approximately half the information cut. What does the CDC know about Lyme disease that requires hiding from the public? The Centers for Disease Control has betrayed the public trust. For more on the FOIA see Poughkeepsie Journal article # 1    article # 2 By Mary Beth Pfeiffer Mary Beth Pfeiffer of the Poughkeepsie Journal highlighted the worst conflicts of interests between federal officials and a core group of researchers receiving government grants in the “ties that bind” page. Read more… Who is responsible for the “highly pathogenic” clone of the Lyme disease bacteria, (Borrelia burgdorferi) found in Europe and North America as reported by the journal Emerging Infectious Diseases? Read more… The following list establishes who knew what and when identifying their contribution to the disinformation campaign aimed at denying persistent Borrelia infection. When subpoenas are issued CDC officials cannot claim conflicts of scheduling issues and must attend to testify under oath regarding the mishandling of Lyme disease. Congressional Investigation Subpoena List 1. CDC Officials DAVID DENNIS (1) (2) (3), C. Ben Beard, Barbara Johnson (1), Paul Mead (1), Joseph Breen     Former NIH Lyme Program Officers Phillip Baker, Edward McSweegan (1)(2) 2. IDSA Lyme Treatment Guideline Authors  (1) (2) (3) (4) Gary P Wormser (1), Raymond J. Dattwyler (1), Eugene D. Shapiro,          John J Halperin (1), Allen C. Steere (1), Mark S Klempner (1),   Peter J. Krause, Johan S. Bakken, Franc Strle, Gerold Stanek,                  Linda Bockenstedt (1), Durland Fish (1) (2), J. Stephen Dumler, Robert B. Nadelman     Academic Medicine Paul Auwaerter, Arthur Weinstein (1) 3. The American Lyme Disease Foundation Phillip Baker, (1) (2) Executive Director Please call your legislator and respectfully urge immediate action from the U.S. Senate and U.S. House of Representatives to fully investigate the facts surrounding the failures of leadership and management deficiencies by requesting a Congressional investigation of the CDC, IDSA and ALDF (Find your Senator) (Find your Representative) Yolanda Foster on Lyme disease, one of the "Real Housewives of Beverly Hills” Dr Alan MacDonald on Alzheimer's and Lyme disease, “The Biology of Lyme Disease: An Expert's Perspective” Remarks: World Wide Lyme Rally & Protest Kenneth B. Liegner, M.D. Lyme disease testing flaws and conflicts of interests The Barry Marshall affect on chronic disease Inconvenient truths Bullying of Lyme patients List of abbreviations CDC: Centers for Disease ControlIDSA: Infectious Disease Society of AmericaALDF: American Lyme Disease Foundation Carl TuttleHudson, NH03051 Website: New Hampshire Lyme Misdiagnosis  Letter to the Editor, The Lancet Infectious Diseases Published May 2012 The Tuttle family was featured on New Hampshire Chronicle’s “Living with Lyme” with the program archived on their site in six small segments for viewing on the computer Part 1, Part 2, Part 3, Part 4, Part 5, Part 6

Carl Tuttle
60,919 supporters
Update posted 3 weeks ago

Petition to Katie Riggs, Aldridge Pite, LLP, Mark Kaplowitz, Esq., JPMorgan Chase Bank, N.A. Vice President and Assistant General Counsel, Casey Pence Senior Associate Aldridge | Pite, LLP 111 SW Columbia St, Suite 950 Portland, OR 9720

Save The Healing House!

Deb Elder has lived an authentic life, often speaking out at injustice.Her purchase of a single family home in West Eugene in 1999 ended a pattern of divorced parents and a broken family for over two decades. By the time at age 30, she had moved over 30 times. In 1992 Deb moved to Eugene Oregon. In the Spring of 1999 she purchased a single family home with her partner. Later, she purchased the partner's interest and continued to make payments on her mortgage. Let's remember that Deb was born with Lyme pathogens, she sustained a Worker Injury as an Auto Mechanic in 1987. Her California lifestyle included her working over her horse much of a decade, chasing cows on local San Luis Obispo CA ranch lands. Deb roached the main of her trusted steed, Tyrel as it was a holdfast for tics which rained on them both as they rode beneath the Central California Oaks, chasing cattle. Later on a camping trip in 2013 mosquitoes bit her in Oregon at Lake Timpanogos Campground where she was injected with the near fatal pathogens which created the cascate of symptoms she experies today. The accumulated pathogens laid her out in bed for 16 months. She faced heart failure and other medical complications. Her mom Frances, passed in 1991 at age 51 to Budd Chiari, a obscure Liver disease with gross medical complications which are yet to be explained other than pathogens. Frances father Harold Elder died of Alzheimer's, her mother of cardiac issues. Thus the genetic transference of pathogens is traced back, it's proven with Dr. Alan MacDonald that Alzheimer's is Lyme Disease pathogens. We know congenital transmissions happen. Deb now owns both of the mortgages on her modest home in Eugene. She lost her job in May 2011, due to undiagnosed and untreated pathogens within her.  Soon a friend tells her, 'you don't have Fibromyalgia', "you've got Lyme Disease" she fell behind on the note. Her Igenex testing proved her friend correct with multiple positive test results. Igenex testing prove it right with the West Coast version of Babesia, Duncani  ... Dr. Harris's offices in California confirmed these findings at great, out of pocket cost. Deb has serious cardiac issues just after a camping trip in 2013 which left her bedridden for the next 16 months. She was hospitalized 6 times that year with no answers from the Oregon medical community at large nor their paid liars the IDSA doctors.  Deb recorded her phone conversation with Conversation between Deb Elder and the Infectious Disease unit at PeaceHealth. August 21, 2014 "PH lady: There’s nobody that I know of in Lane County that currently treats for Lyme Disease. Deb: So, I mean, you guys are the public health medical office for infectious diseases, right? Lady: Correct. Deb: And, so I guess I don’t understand. I have infections, and you are telling me that on Lyme disease, there is no Lady interrupts: Our doctors don’t treat for Lyme disease here …that’s just their choice.  They don’t feel there’s any current treatment for it, so they don’t treat for it. Um, the CDC doesn’t recognize it. I mean there’s other doctors that do have ways they feel that they can treat it, but here it’s not something we want to take on, treating Lyme disease, it’s not something we practice here. Deb: You just said the CDC doesn’t acknowledge Lyme disease. Lady: There’s no diagnosis code for Lyme disease. They recognize it as being conditions or symptoms. That’s how they treat it for Lyme  disease. Try as she might, never did she get well enough to resume work. SSDI was her only means of income. Yet, all this tough chick did was advocate to others about these pathogens, Lyme Disease, treatment with Bee Venom Therapy, and she even attended several national Lyme Disease rallies all over the nation. Deb has been seen in many videos and media pieces on the matter. Well in fact her#2014BVTChallenge enrolled over 70 patients, all improved, most significantly. Upon this Bee Venom success, Deb opened her home to create the first Bee Venom clinic for Oregon! Dozens of folks from other states have traveled to meet with her and to attend her Bee Venom camp, where folks stay with her to get first hand help over a period of days to learn.  Hundreds of people have come to her home, met her, love her good works and have immensely been positively affected. Too, Deb created The Flippin Lyme Foundation as a means under the surveillance of a 5013(c)3 not for profit agency, to promote her good works. She needs a place to teach. So good are her works, River Roofing, a local roofing company who provides a 'free roof' to a community member whose do so much for the good of our community. In 2015 Deb Elder won this amazing award! River Roofing happily applied the roof to her home. That same home now in jeopardy. Chase trying to 'take back' that roof and the rest of the house with it. You see, J P Morgan Chase has elected to hire, Katie Riggs OSB#095861with Aldridge Pite, LLP, 111 SW Columbia St, Ste 950, Portland Oregon 97201.  Casey PenceSenior AssociateAldridge | Pite, LLP, 111 SW Columbia St, Suite 950, Portland, OR 97201 Main Office: (858) 750-7600, Direct Dial: (503) 345-9501Fax: (503)  to represent them in a Foreclosure action against Debie Elder some 16-months ago. It's a very stale case, likely to go to hearing any week now. Also involved: Mark Kaplowitz, Esq., JPMorgan Chase Bank, N.A.Vice President and Assistant General Counsel, 4 Chase Metrotech Center, 22nd Floor, Brooklyn, NY 11245, (718) 242-3164,  Neither has responded to Deb's attempts to recreate the loan modification documents which were lost and compete that process whereby she can afford to retain her home on her sole income, SSDI.  This after the Making Homes Affordable program documents got lost in the flowerbed, raked over by Deb's chickens to be found mid November. . . Opportunity lost.  Today, Deb and her legal advisors have begged JP Morgan Chase to restore those lost documents. To give her a chance to retain her home of nearly 20-years.  Lane County has no Section 8 HUD housing funding until 2019...Yep, this is a critical situation. Deb can use your voice right now.  Call, write, request: Chase finalize the Loan Modification.Demand local news media outlets cover the story. To be quiet will allow Deb to migrate at age 56 to be living basically in a homeless situation. She has no partner, no children, little family and very few financial resources.  What's needed is a community voice to say no, to this Foreclosure action in Lane County: Case #16CV23785. It's a 16-month stale case and likely to go to trial very soon without interactions to end the process. JP Morgan Chase has to offer and provide new final documents to be signed and end their Foreclosure actions. This is a community resource we cannot afford to lose.  Thank you kindly for you response. You may contact Deb Elder at:The Flippin Lyme FoundationPO Box 40903Eugene OR Deb Elder is fully qualified, after a 2-year process, to have her mortgage amended.The 'NEDCO Making Homes Affordable' program should be allowed to be finalized to allow Ms. Elder to retain her home in an affordable position as is noted in the environmentally damaged and humanly mishandled manner. Chase should recall this Circuit Court of Lane County claim and finalize the Loan Modification documents which were destroyed.That's the right thing to do. 

Deb Elder
402 supporters
Update posted 1 month ago

Petition to Secretary of State for Health of the United Kingdom

Petition to The Secretary of State for Health UK re: NICE guidelines on Lyme Disease

Update post publication of the NICE Guidelines on Lyme Disease There’s nothing unexpected in the published guidance.  NICE are tied to the flawed process that they use which excludes non-human or older data. (See update dated 13th April 2018 for further detail). The premise of any guideline is that it is ‘evidence based’. This document is based on “poor” evidence (NICE’s assessment) and as such, NICE have produced poor guidance, exactly as we detailed in the original petition below.  It fails to meet their own standards as it does not represent the Lyme disease patient population, as a whole, and as such it will not improve patient health or outcomes.  “The greatest danger of flawed clinical guidelines is to patients. Recommendations that do not take due account of the evidence can result in suboptimal, ineffective, or harmful practices. Guidelines that are inflexible can harm by leaving insufficient room for clinicians to tailor care to patients’ personal circumstances and medical history. What is best for patients overall, as recommended in guidelines, may be inappropriate for individuals... (BMJ 1999)” This process needs to be challenged and changed so this petition will continue until the Secretary of State for Health intervenes, as is his duty to protect of the physical and mental health of the people.-------------------------------------------------------------------------------------Petition to The Secretary of State for Health We hereby petition The Secretary of State for Health (SoSH) to intervene and to give direction to The National Institute for Health and Care Excellence (NICE) to review and modify its guideline methodologies and procedures with respect to the forthcoming guideline GID-NG10007; Lyme Disease (Lyme Guidelines), due for publication on 4 April 2018, as the current standards represent a significant failure in the performance of its functions. Whilst we understand the need for high standards and cost efficacy and are aware that there is a degree of transparency throughout the process and that individuals working for NICE are performing to rigorous process and set protocols, the current process has created draft guidance that is dangerously flawed and must not be allowed to proceed to publication on the intended date. We ask that in his intervention the SoSH directs NICE to actively listen to our concerns and engage with the patients and those who are both experienced and willing to treat Lyme patients, who will be prejudicially hindered by the limiting guidance if it proceeds to publication.  Only by such engagement with a large patient population who have been diagnosed with Lyme disease and with those doctors who routinely treat and manage patients with persistent infection will meaningful guidelines be devised.  By petitioning the SoSH we remind him of his duty under section 1 of the National Health Service Act 2006 to secure improvement in: (a)    the physical and mental health of the people of England, and (b)   the prevention, diagnosis and treatment of illness. The Lyme Guidelines if published, will necessarily mean that the SoSH is failing in his duties and they will: (a) contravene NICE’s own remit with respect to reducing uncertainty in all respects of prevention, patient management and treatment. The data clearly does not represent the Lyme disease patient population, as a whole, and as such it will not improve patient health or outcomes; and (b) due to shortcomings and an unwillingness, to date, to revise the process, it will inadvertently fail to respect, protect or fulfil patients’ human rights under the following UN treaties (as detailed in Joint Fact Sheet WHO/OHCHR/323): International Covenant on Economic, Social and Cultural Rights (ICESCR), 1966 Convention on the Elimination of All Forms of Discrimination Against Women (CEDAW), 1979 Convention on the Rights of the Child (CRC), 1989 European Social Charter, 1961 and under the Human Rights Act 1998; and the Lyme Guidelines certainly do not “reflect the values of society” to which NICE are committed The severity of our claims is substantiated below: Overview NICE have presented the Lyme Guidelines based on data from only 315 seropositive patients (detail below). This is not going to change prior to the proposed publication, unless the engagement we are asking the SoSH to direct pursuant to this petition is undertaken. None of these patients: (a)  had a rash but did not get diagnosed for months/years (b)  had a tick bite but did not get diagnosed for months/years (c)  had either but then had a negative blood test (d)  had neither bite nor rash but had a clear clinical profile and were not treated (these patients were not included in any of the three accepted studies) (e)  were children (f)  were pregnant women (g)  were people who went undiagnosed for years as clinical symptoms were slow to develop (h)  were people with co-infections, or if they were the co-infections were not disclosed (i)  were people with immune issues possibly caused by Lyme or co-infections (j)  were born with Lyme disease In fact, the Lyme Guidelines do not uphold the high standards of validity to which NICE must be held accountable under the The Health and Social Care Act 2012 and The National Institute for Health and Care Excellence (Constitution and Functions) and Health and Social Care Information Centre (Functions) Regulations 2013 (SI 2013/259). It is based on a group of patients who were not clinically diagnosed and were – most likely - within a few months of contracting Lyme Disease. As such, the Lyme Guidelines, especially the treatment protocols are erroneously based on a very limited population that is unrepresentative of the variability of Lyme disease patients as a whole. The Lyme Guidelines will not only anger and upset people (and their relatives) who are already dealing with physical pain and the trauma of other associated symptoms of Lyme disease but it violates their human rights to access to healthcare which should be both protected and fulfilled by our government. In particular. if the Secretary of State for Health fails to intervene then he can be held accountable for a failure in his duties under section 1 of the National Health Service Act 2006. Epidemiology In terms of determining the incidence of Lyme disease across the UK, NICE found 8 acceptable studies.  All these studies, bar 1 (where it is not clarified), used blood serology to classify actual Lyme cases. Not one accepted study utilised clinical diagnosis and some even excluded patients with EM rash.  This unfortunately means that the estimations of a widespread 0.06-6.8 persons infected per 100,000 is most likely grossly inaccurate. Additional to this, the data concerning patient cases across differing areas of the UK is worthless as people cross county lines and occasionally travel abroad. To suggest that a person is more likely to contract Lyme in one area of the UK cannot be substantiated. This data is unreliable, incomplete and may lead to under-diagnosis in apparently “low incidence areas”. Other tick born disease The incidence of additional tick born disease including Bartonella and Babesia “are thought to be rare in the UK” according to NICE but they acquiesce that they have no data to confirm or refute this. Despite failing to analyse any data on this issue, co-infections were excluded from this guideline process. The suggestion that “better evidence may improve diagnostic and treatment decisions” is based on guesswork (no doubt in part due to the fact that tests for these pathogens are extremely insensitive and only available for a small number of species). Failure to address co-infections as part of this procedure will undoubtedly negatively affect patient treatment and care. The clear majority (if not all) patients with a diagnosis of Lyme disease will have multiple-pathologies and at least one other co-infection and will require very different treatment. Mycoplasma and other opportunistic and/or viral infections are relatively common. Further to this, many sufferers have compromised immune systems, and little is understood about the link with Lyme. Randomised Controlled Trials With respect to Randomised Controlled Trials (RCT) involving Lyme patients, including those found acceptable by NICE, there are major variables that would most certainly skew the data.  It would be almost impossible to level the starting field for any treatment protocol, making no treatment “one size fits all” standardised and especially not if the data pool is  as small as that accepted by NICE. A data pool of 315 patients that didn’t have additional tick born disease or co-infections seems unlikely (or perhaps fortunate) and we have no way to determine whether this data is skewed in any way. Having only deemed 3 clinical studies acceptable for review of management and treatment of patients with persistent symptoms and found NONE acceptable for review of “non-specific” symptoms of Lyme they have based all management and treatment guidance on data from only 315 Lyme positive patients (see overview above) . Additional to this, they have stated that this data, on which they base their guidance, is of low to moderate quality. We can only assume that this means that their guidance is also of low to moderate quality. This cannot possibly be the standard to which we expect our physicians to guide patient care. Also with respect to any/all RCT, we need to point out that with current available testing inadequacies for Lyme it is on a practical level impossible to accurately determine a control group.  A percentage of people may present with negative serology and be currently symptom free. The Kalish study 2001, rejected one such control subject due to a positive serology. This makes it probable that all controlled RCT will provide inaccurate or uncertain data. Review documents “E” and “L” state that the question that dictates which data was reviewed is: What is the most clinically and cost- effective treatment for seropositive people, who have non- specific symptoms that may be related to Lyme disease? If NICE have complied with this instruction, then they would have failed to review any documentation where the patients had been diagnosed clinically (which does appear to be the case). Of the 315 Lyme positive patients whose data have been extrapolated to form this guideline all were seropositive or had the EM, Erythema migrans rash and Lyme proven by biopsy or alternative. This represents only a small subset of the Lyme patient population. Having reviewed the documentation it is, however, unlikely that research based on purely clinically diagnosed patients will exist. After all, how many peer-reviewed journals will accept a publication based on the clinical diagnosis of a physician alone – despite assurances that acknowledge current blood testing inadequacies, clinical diagnosis in the absence of positive serology is rare? The guidelines will stipulate that clinical diagnosis alongside review of blood serology is important however, the research on which they have based ALL guidance has not done so. If a patient does not have a positive blood test or an EM rash, how exactly are they being treated, if at all? Should their treatment differ in some way from an individual presenting with a rash/positive test? This is potentially a group of very large subsets as a relatively small proportion of patients present with the rash and those who don’t are rarely even tested for Lyme. We have no way to currently determine how many people to whom this applies or ways in which these subgroups vary with respect to treatment response. It is not reasonable to extrapolate data for example a) from a group with a recent infection that responds well to antibiotic therapy to a person who has been misdiagnosed for 5, 10 or 15 years as is regularly the case or b) to a child born with Lyme who may not make antibodies to the disease (so will be seronegative and also probably undiagnosed). This important issue has not been addressed and therefore NICE guidance cannot be close to accurate and will fail to protect patient health outcomes. Blood testing/delayed diagnosis With respect to blood testing, again the research is defined by NICE as of “very low quality”. “There is a strong potential for the results to be an overestimate of the true sensitivity and specificity values due to the way case-control studies are conducted.” We can therefore surmise that the guidance in this respect is also of low quality and that “there is a strong potential” that many cases will be missed. As such, they also state “it may be appropriate to give a ‘possible’ or ‘probable’ diagnosis of Lyme disease and treat accordingly …before test results become available”.  So, whilst they acknowledge that the sensitivity and specificity of blood tests is most likely inaccurate, and they say that treatment should be started, the interpretation is that treatment will/should stop once blood results are received, if negative of course, despite the inadequacies in specificity. This contradiction, does not create certainty in this area and will ultimately result in treatment withdrawal for a number of Lyme positive patients. A number of Lyme sufferers have gone undiagnosed for many years despite presenting with an EM rash or remembering a bite many years prior to illness. There has been no research to date to explain why some people can carry Lyme apparently symptom free for so long and/or whether treatment for these patients should be different from “standard”. We don’t even know why in some cases they have negative blood results despite repeated testing and continuing severe symptoms. NICE has completely failed to address this population’s needs or concerns, and the potential variability with respect to this group makes setting a specific guideline for the population as a whole very presumptuous and will also lead to lowering of patient healthcare outcomes. Persisting symptoms The Lyme Guidelines state that “if a person has persisting symptoms following 2 courses of antibiotics” they will be referred to a specialist.  At no point does the guidance mention potential for continuing infection despite compelling research in this area; currently stating solely that other specialists might include rheumatologists. Most alarmingly, however, the experience repeatedly borne out by a large patient group of Lyme disease suffers attests to the fact that there are, in fact, no specialists in the UK at the current time (infectious disease, neurology, rheumatology, gastroenterology or otherwise), accessible via the NHS who are sufficiently knowledgeable about Lyme disease such that any meaningful help can be offered to these patients. The Lyme Guidelines will therefore simply perpetuate this hopeless situation if they proceed to publication. The patients will be referred to so called “specialists” who know little if anything about Lyme disease and when their symptoms are dismissed because the specialist does not have the requisite knowledge or guidelines to treat, their GP will most likely employ 'disengagement strategies' to remove the patient from their care leaving them with no one to treat the potential infectious underlying cause of these symptoms. This will in no way improve patient outcomes and may in fact be extremely detrimental to mental as well as physical health. Related to this and of concern is the statement that “most people recover completely” (under the heading “information for people with Lyme disease” at paragraph 1.4 of the Lyme Guidelines). Unfortunately, where diagnosis is delayed, persistent and relapsing Lyme disease is a reality suffered by a large patient population.  Indeed, the reason why this statement is so alarming is because the antibiotic treatment set out in the Lyme Guidelines at tables 1 and 2, will only ensure that most people do not recover completely as there is significant research to show that longer courses and repeated courses of antibiotics are necessary for longstanding and complex cases.    Yet, NICE state that they did not review any clinical literature with respect to assessment and management of persistent symptoms related to Lyme disease and rather insinuate that these people cannot possible still have the infection unless they have been re-infected. The recommendations include psychiatric help and “symptom” relief, the example given being "heart block" which is seemingly based, not on any quality of data but apparently, on personal opinions from the committee. As such we find these recommendations unsubstantiated, lacking in clinical judgement and sympathy and open to facilitate abuse of the patient. Research recommendations The number and nature of the Research Recommendations from basic diagnosis and treatment to management clearly indicates that NICE does not have enough data to produce a guideline that could remotely approach the required standards for NICE Guidance. Use of other accepted guidelines Where there is little/poor evidence from scientific studies usually NICE is expected look to other sources to see if it concurs or differs ('triangulation').  So, on the basis that there is already a group of experts in this field with experience working with thousands of patients across all subsets of Lyme disease treatment and management worldwide, why hasn’t NICE worked with The International Lyme and Associated Diseases Society (ILADS)? A good starting point would have been to review ILADS’ US Federally approved guidelines (which have been written against the backdrop of over seven hundred peer reviewed, published scientific articles) and we urge the SoSH to intervene and direct that these guidelines be considered in detail prior to any publication of NICE guidelines. Concluding remarks For all of the above reasons we respectfully urge the SoSH to remove the current Lyme Guidelines from the NICE website and to direct NICE to engage with the UK’s Lyme patient population (as represented by the numerous patient groups) and with ILADS in order that a set of guidelines can be produced that will meaningfully secure improvement in the physical and mental health of the people of England, and in the prevention, diagnosis and treatment of illness caused by Lyme disease. Indeed, only by doing so will a set of guidelines be produced that is fit for purpose and that can discharge the duties of the SoSH under section 1 of the National Health Service Act 2006.   This petition is produced and published by the Lyme Protest 2018 Working group, a team established from multiple web based groups concerned with the health and well being of individuals with Lyme disease and associated co-infections.         .           .                                                                                                                                                                                                    

Shelley Cranton
6,640 supporters
Update posted 2 months ago

Petition to American Red Cross, Centers for Disease Control and Prevention, Food and Drug Administration, Donald Trump


Lyme Disease is a devastating disease that wreaks havoc on nearly every internal body system. It's often mis-diagnosed leaving many people without knowledge of these organisms living in their bodies. These people may so kindly donate blood because they are unaware of any such disease. The blood collection centers do test for certain diseases like, Hepatitis B, C, West Nile and AIDS. However there are no protocols in place to test the blood donations for the presence of Borrelia Burgdorferi or the 300+ co-infections. According to studies by NIH and the CDC, it is confirmed that Borrelia Burgdorferi can survive being stored in a blood bag. It has also been proven in a laboratory using mice that the Lyme bacteria can successfully be transmitted via transfusion. This is a HUGE PROBLEM!!!!!! Please sign this petition to protect our recipients of blood donations and STOP the spread of Lyme Disease. With this petition we ask three things: 1. Check the entire Nations current blood supply for contamination and dispose of any unsafe supply.  2. Add Lyme testing to the protocol when receiving donated blood.   3. Investigate the CDC, as their Lyme guidelines are seriously outdated.  Borrelia Burdorferi and it's co-infections are blood borne infectious diseases!  This needs immediate attention before one more person becomes infected. There have already been documented cases of Babesia transmission via transfusion back in 2012, however the CDC, nor any other agencies turned their so called concern into change.    Lyme Disease is a world wide Pandemic.  

Kristie Penn
2,278 supporters