Infectious disease specialists agree that “chronic Lyme disease” does not exist, and that Lyme disease from a tick bite can be cured with a short course of antibiotics.
Lyme disease is a bacterial illness carried by ticks. The Infectious Diseases Society of America (IDSA) maintains that it is easily diagnosed and usually curable with a short course of antibiotics. The IDSA represents 9,000 U.S. doctors.
But a growing number of Americans are saying their Lyme disease symptoms persist well beyond the three-week course of antibiotic treatment. They complain of muscle aches, headaches, and fatigue. They have found doctors to treat them with more antibiotics, but not without controversy.Patients who describe general symptoms such as achiness and fatigue plead for doctors' help. Those who are diagnosed with fibromyalgia and chronic fatigue syndrome sometimes have the same reaction. But in the case of Lyme disease, doctors aim to cure the illness with long-term antibiotics, not just manage symptoms.
Medical boards in states such as New York have questioned doctors who prescribe antibiotics for “post-treatment Lyme disease syndrome,” as the CDC describes the condition. Organizations such as LymeDisease.org are battling to have the IDSA treatment guidelines removed from the National Guideline Clearinghouse, a branch of the U.S. Department of Health and Human Services.
“The people behind pushing this ‘syndrome’ (including numerous people who have chronic fatigue and other conditions that are difficult to diagnose and treat, and who are therefore looking for answers) have gained remarkable political power,” Dr. Otto Yang told Healthline. Yang is an infectious disease specialist at the University of California, Los Angeles (UCLA).
A bill to shield doctors in New York from the retribution of government regulators for treating chronic Lyme disease patients with antibiotics is sitting on Gov. Andrew Cuomo’s desk now.
Doctors promoting the bill say their patients have “chronic Lyme disease,” an ongoing condition caused by the original infectious tick bite. They choose to treat it with antibiotics beyond the stated IDSA guidelines. Some of these doctors place patients on antibiotics intravenously for six months or even longer, Dr. Daniel Cameron told Healthline.
Cameron serves as president of the International Lyme and Associated Diseases Society (ILADS). He declined to say how many members the organization has. ILADS is the engine behind the chronic Lyme disease movement.
Although the widely accepted Western blot test used by most doctors to test for Lyme disease may come back negative, Cameron says patients can get tested elsewhere and receive a positive result. For example, a company called IGeneX offers testing using the Western blot, but says their technique is more sensitive. It has two extra protein “bands” to better detect an ongoing Lyme disease infection, Cameron said. The president and CEO of IGeneX, Nick Harris, was one of the founders of ILADS.
Cameron authored a 2010 article “Proof that Chronic Lyme Disease Exists” in the journal Interdisciplinary Perspectives on Infectious Disease. In it he laid out research showing that some people with Lyme disease have symptoms for six years or longer after completing the standard treatment. Thinking problems, arthritis, and nerve damage can be debilitating for these patients.
In the article, Cameron quotes the Dr. Mark S. Klempner trials as showing that such patients have a quality of life equivalent to that of someone with osteoarthritis or congestive heart failure. But the Klempner trials, published in the New England Journal of Medicine, also concluded that prolonged antibiotic use (for 90 days) was so ineffective that the data and safety monitoring board recommended the trials be discontinued.
“States have been lobbied to cover treatment of this syndrome, since it is not recognized by insurance as a real disease,” Yang said. But Cameron said insurers often do pay for the treatment....
“In some cases, people may have serious illnesses that do not get diagnosed because they think this is the answer,” Yang told Healthline. “Also note that many people feel better on antibiotics, but the mind is powerful, and it is well known that the placebo effect is generally 40 to 50 percent when the evaluation of a treatment is subjective (e.g. fatigue, mood, insomnia, appetite ... anything that depends on human perception).”
Cameron told Healthline that those bitten by a tick may not only be suffering from Lyme disease, but from other co-infections as well. Testing for co-infections is not easy...
Cameron said the idea that patients are being needlessly treated with medications that cause uncomfortable side effects does not take into account the whole picture. “There are plenty of side effects from antibiotics, but there are plenty of problems if you don’t get well and are living with a chronic disease. Loss of job. Loss of education,” he said.
Cameron said people come to him who are in so much pain they cannot work and are also having relationship problems due to their illness. Most get better, he said, some in a month and some in a year. He said doctors who stop prescribing antibiotics after three weeks are missing an opportunity to help a patient.
Dr. Amesh Adalja, an infectious diseases specialist and an assistant professor at the University of Pittsburgh, says there is no scientific evidence to suggest an ongoing infection in patients with lingering Lyme disease symptoms. He said all infections require a recovery time beyond when the antibiotics run out. He said that continuing antibiotic treatment after a few weeks for people who have Lyme disease carries “a lot of risk and no real benefit.”
Adalja said the positive test results that some laboratories produce are just a way to support a doctor’s diagnosis. “It is not a valid way of approaching this,” he said. The CDC also warns against prolonged antibiotic use because it can drive the growth of bacteria that are resistant to antibiotic medications.
Oral antibiotics can cause gastrointestinal upset, and those who take antibiotics intravenously are subject to line infections. Last year, the CDC issued a call to action to halt unnecessary prescribing of antibiotics.
Yang said Lyme disease is a “very well understood condition, with close parallels to another old and well understood disease, syphilis, which is caused by a related bacterium.”
http://www.healthline.com/health-news/you-do-not-have-chronic-lyme-disease-091514#3
See Alternatively diagnosed chronic Lyme syndrome 6/26/15
Inspired by seeing a 7 year old patient who has had years of oral antibiotic therapy after testing by IGeneX was positive for Lyme, bartonella and babesia. At one time, the patient was receiving azithromycin, augmentin, tinidazole, trimethaprim/sulfamethoxazole, Malarone and nystatin simultaneously under the direction of a Lyme literate physician.
Cameron DJ. Proof that chronic lyme disease exists. Interdiscip Perspect
ReplyDeleteInfect Dis. 2010;2010:876450. doi: 10.1155/2010/876450. Epub 2010 May 25.
Abstract
The evidence continues to mount that Chronic Lyme Disease (CLD) exists and must be addressed by the medical community if solutions are to be found. Four National Institutes of Health (NIH) trials validated the existence and severity of CLD. Despite the evidence, there are physicians who continue to deny the existence and severity of CLD, which can hinder efforts to find a solution. Recognizing CLD could facilitate efforts to avoid diagnostic delays of two years and durations of illness of 4.7 to 9 years described in the NIH trials. The risk to society of emerging antibiotic-resistant organisms should be weighed against the societal risks associated with failing to treat an emerging population saddled with CLD. The mixed long-term outcome in children could also be examined. Once we accept the evidence that CLD exists, the medical community should be able to find solutions. Medical professionals should be encouraged to examine whether: (1) innovative treatments for early LD might prevent CLD, (2) early diagnosis of CLD might result in better treatment outcomes, and (3) more effective treatment regimens can be developed for CLD patients who have had prolonged illness and an associated poor quality of life.
Klempner MS, Hu LT, Evans J, Schmid CH, Johnson GM, Trevino RP, Norton D, Levy L, Wall D, McCall J, Kosinski M, Weinstein A. Two controlled trials of antibiotic
ReplyDeletetreatment in patients with persistent symptoms and a history of Lyme disease. N
Engl J Med. 2001 Jul 12;345(2):85-92.
Abstract
BACKGROUND:
It is controversial whether prolonged antibiotic treatment is effective for patients in whom symptoms persist after the recommended antibiotic treatment for acute Lyme disease.
METHODS:
We conducted two randomized trials: one in 78 patients who were seropositive for IgG antibodies to Borrelia burgdorferi at the time of enrollment and the other in 51 patients who were seronegative. The patients received either intravenous ceftriaxone, 2 g daily for 30 days, followed by oral doxycycline, 200 mg daily for 60 days, or matching intravenous and oral placebos. Each patient had well-documented, previously treated Lyme disease but had persistent musculoskeletal pain, neurocognitive symptoms, or dysesthesia, often associated with fatigue. The primary outcome measures were improvement on the physical- and mental-health-component summary scales of the Medical Outcomes Study 36-item Short-Form General Health Survey (SF-36)--a scale measuring the health-related quality of life--on day 180 of the study.
RESULTS:
After a planned interim analysis, the data and safety monitoring board recommended that the studies be discontinued because data from the first 107 patients indicated that it was highly unlikely that a significant difference in treatment efficacy between the groups would be observed with the planned full enrollment of 260 patients. Base-line assessments documented severe impairment in the patients' health-related quality of life. In intention-to-treat analyses, there were no significant differences in the outcomes with prolonged antibiotic treatment as compared with placebo. Among the seropositive patients who were treated with antibiotics, there was improvement in the score on the physical-component summary scale of the SF-36, the mental-component summary scale, or both in 37 percent, no change in 29 percent, and worsening in 34 percent; among seropositive patients receiving placebo, there was improvement in 40 percent, no change in 26 percent, and worsening in 34 percent (P=0.96 for the comparison between treatment groups). The results were similar for the seronegative patients.
CONCLUSIONS:
There is considerable impairment of health-related quality of life among patients with persistent symptoms despite previous antibiotic treatment for acute Lyme disease. However, in these two trials, treatment with intravenous and oral antibiotics for 90 days did not improve symptoms more than placebo.
Stricker RB. Counterpoint: long-term antibiotic therapy improves persistent
ReplyDeletesymptoms associated with lyme disease. Clin Infect Dis. 2007 Jul 15;45(2):149-57.
Abstract
BACKGROUND:
Controversy exists regarding the diagnosis and treatment of Lyme disease. Patients with persistent symptoms after standard (2-4-week) antibiotic therapy for this tickborne illness have been denied further antibiotic treatment as a result of the perception that long-term infection with the Lyme spirochete, Borrelia burgdorferi, and associated tickborne pathogens is rare or nonexistent.
METHODS:
I review the pathophysiology of B. burgdorferi infection and the peer-reviewed literature on diagnostic Lyme disease testing, standard treatment results, and coinfection with tickborne agents, such as Babesia, Anaplasma, Ehrlichia, and Bartonella species. I also examine uncontrolled and controlled trials of prolonged antibiotic therapy in patients with persistent symptoms of Lyme disease.
RESULTS:
The complex "stealth" pathology of B. burgdorferi allows the spirochete to invade diverse tissues, elude the immune response, and establish long-term infection. Commercial testing for Lyme disease is highly specific but relatively insensitive, especially during the later stages of disease. Numerous studies have documented the failure of standard antibiotic therapy in patients with Lyme disease. Previous uncontrolled trials and recent placebo-controlled trials suggest that prolonged antibiotic therapy (duration, >4 weeks) may be beneficial for patients with persistent Lyme disease symptoms. Tickborne coinfections may increase the severity and duration of infection with B. burgdorferi.
CONCLUSIONS:
Prolonged antibiotic therapy may be useful and justifiable in patients with persistent symptoms of Lyme disease and coinfection with tickborne agents.
Lyme disease is caused by an infection with a type of bacterium called Borrelia burgdorferi, which typically is transmitted by the deer tick. Lyme disease often causes a red, circular rash and muscle and joint aches. A short-course of oral antibiotics remains the standard treatment for patients with Lyme disease, the most common tick-borne illness, which first was discovered in Lyme, Conn.
ReplyDeleteAt issue is the existence of a “chronic” form of Lyme disease and its treatment with long-term antibiotics for months or years. This controversial and costly treatment, which is typically delivered intravenously through a catheter, is advocated by self-described “Lyme literate” physicians.
“IDSA’s primary concern is for the health and safety of patients,” said IDSA President Richard Whitley, MD. “Our goal is to ensure that patients are given treatment that is safe, effective and supported by scientific evidence. Allegations that the 2006 guidelines panelists stood to gain from the recommendations are unfounded. In fact, one could argue the opposite was true, because the panelists recommended short courses of generic drugs.”
To ensure a fair and unbiased review of the 2006 guidelines, IDSA and the Attorney General jointly selected an ombudsman, Howard Brody, MD, PhD, an author and respected medical ethicist at the University of Texas Medical Branch. Dr. Brody screened all potential Review Panel members for conflicts of interest using criteria jointly approved by the Attorney General and IDSA. The Review Panel was comprised of nine scientists and physicians from relevant disciplines who had not served on any previous Lyme disease guidelines panel. (continued)
(continued)The Review Panel’s work took more than a year to complete, with the group convening 16 times, including at an all-day public hearing in Washington, D.C. More than 150 individuals or organizations submitted evidence and other information including letters, newspaper articles, patient medical records and other materials on Lyme disease and its treatment.
ReplyDelete“This was truly an extraordinary review process,” said Carol J. Baker, MD, who chaired the Review Panel and is a pediatric infectious diseases specialist at Baylor College of Medicine, Houston. “The final report includes more than 1000 citations, and after thoughtfully and carefully reviewing myriad materials, the panelists feel confident that advice to physicians treating Lyme disease should remain the same as set forth in the 2006 Lyme disease guidelines.”
The Review Panel concurred that all of the recommendations from the 2006 guidelines are medically and scientifically justified in light of the evidence and information provided, including the recommendations that are most contentious: that there is no convincing evidence for the existence of chronic Lyme infection; and that long-term antibiotic treatment of “chronic Lyme disease” is unproven and unwarranted. Inappropriate use of antibiotics (especially given intravenously) has been shown to lead to deadly blood infections, serious drug reactions and C. difficile diarrhea, as well as the creation of antibiotic-resistant bacteria or “superbugs.”
As noted in the Review Panel report, “In the case of Lyme disease, there has yet to be a single high quality clinical study that demonstrates comparable benefit to prolonging antibiotic therapy beyond one month.” The report also noted that “the inherent risks of long-term antibiotic therapy were not justified by clinical benefit.”
At the request of the Attorney General, the Panel also reviewed a statement in the guidelines’ executive summary concerning diagnostic testing. The Panel was evenly split on whether the statement would benefit from modification or clarification. In its final report, the Panel offered this guidance to clinicians: “Symptoms that are commonly attributed to chronic or persistent Lyme, such as arthralgias, fatigue, and cognitive dysfunction, are seen in many other clinical conditions and are, in fact, common in the general population…. It would thus be clinically imprudent to make the diagnosis of Lyme disease using these nonspecific findings alone.” On the other hand, the Panel said, “in clinical practice, the presence of certain classic complications of Lyme disease such as aseptic meningitis, AV nodal block, inflammatory arthritis, and cranial or peripheral neuropathies, in a patient with epidemiologic risk of Lyme disease and in whom alternative diagnoses have been excluded or are unlikely, may be sufficiently convincing as to constitute an exception to the statement in the Executive Summary.”
- See more at: http://www.idsociety.org/Lyme_Review_Panel_News_Release/#sthash.O64J0WYj.dpuf
Writer Allie Cashel begins her new book, “Suffering the Silence: Chronic Lyme Disease in an Age of Denial,” noting that a dismissive approach by doctors to a patient’s Lyme disease symptoms “can leave those suffering without an advocate — at a time of perhaps their most desperate need. ... As a result, they are forced to live shadow lives, plagued with disabling symptoms and yet often dismissed by the medical community and by our society as being mentally, rather than physically, ill.”
ReplyDeleteThough 24-year-old Cashel experienced those feelings of isolation and marginalization during her 16 years as a Lyme and tick-borne disease patient, she said she hopes her book, which weaves her own health history with information about Lyme and interviews with people with the disease, will help those suffering from chronic illnesses to know they’re not alone...
Diagnosed with Lyme, she took a normal course of antibiotics and felt better; it was assumed by her family and doctor that she was “totally fine.” It wasn’t until she was an adolescent that she began having more serious, painful and frightening symptoms, which she said she believes stemmed either from that initial Lyme case years before; being re-infected; or from one of the other tick-borne diseases — babesiosis, ehrlichiosis and bartonellosis — that she most likely contracted from that first bite, but which were never properly diagnosed or treated...
Cashel was not only plagued with serious pain, fatigue and neurological problems, but she also found herself bumping up against doctors and others who expected her disease to take a different path, and she often found herself dismissed when she sought help. She stressed her experience is not unique to Lyme...
In the forward to “Suffering the Silence” (Sept. 8, 2015; North Atlantic Books; $17.95), Dr. Bernard Raxlen of Lyme Resource Medical in New York City said the denial of tick-borne illness “is supported and maintained by an elaborate hierarchy of official misinformation.
“Laboratory testing is often inadequate or completely misleading,” he said. “As seronegative Lyme disease is denied by insurance companies, patients who have negative blood test results won’t be offered treatment. ... Worst of all, the IDSA (Infectious Diseases Society of America) guidelines, which do not recognize the existence of chronic Lyme disease, and recommend only minimal treatment, are dangerously inadequate. These outdated guidelines are still used by infectious disease specialists to diagnosis and treat Lyme, as well as by specialists in neurology and rheumatology. And, on the strength of those guidelines, every day insurance companies deny patients coverage they desperately need.”
http://www.poughkeepsiejournal.com/story/news/health/lyme-disease/2015/09/19/lyme-disease-allie-cashel-illness-suffering-silence-book-bard-college/32556393/
Yolanda Foster has shared a candid photo of herself as she undergoes treatment for her debilitating Lyme disease.
ReplyDeleteThe Real Housewives of Beverly Hills star posted an Instagram image which showed her hooked up to an IV and flashing a peace sign on Wednesday.
'Exhausted but determined to uncover the mystery of chronic Lyme disease,' she wrote...
Despite her exhaustion, she managed to keep her spirits up, flashing a 'peace sign' and a small smile..She will sit out this season of Real Housewives Of Beverly Hills as she receives treatment.
The former actress previously revealed that the disease is so bad she can no longer read or watch TV.
Read more: http://www.dailymail.co.uk/tvshowbiz/article-3255490/Yolanda-Foster-shares-photo-getting-IV-treatment-continues-battle-against-Lyme-Disease.html#ixzz3nHehucfe
See regarding Avril Lavigne in comments to Alternatively diagnosed chronic Lyme syndrome 6/26/15
A mother-of-three who has suffered from Lyme disease for 20 years claims that she has passed the illness to her husband and children.
ReplyDeleteAs Phones 4U billionaire John Caudwell said the condition has ripped through his entire family, affecting himself, his ex-wife and three children because doctors don't know that the disease can be transmitted between humans.
Now, Adelle Huckins, 35, from New Marske, North Yorkshire, agrees with his theory as she believes she has passed the 'horrendous' infection to her loved ones.
Talking to the Telegraph, Mrs Huckins reveals that she was only diagnosed with the debilitating disease just four years ago, despite being bitten by a infected tick on a school trip to Germany back in 1991.
Following a subsequent 20 year battle with severe symptoms including severe abdominal pain, chronic fatigue, sickness, heart palpitations, depression and headaches, NHS doctors failed to identify her disease.
In 2011 however, a private health service finally confirmed Mrs Huckins' suspicions - that she has the bacterial infection. And tragically, so does her 10-year-old daughter Kaitlyn.
Though Adelle and her husband Rob believe that all three of their children carry the disease, the fact that the NHS does not recognise Mrs Huckins' outsourced diagnosis means they are being forced to fund their own private tests and treatment.
Adelle told The Telegraph: 'It was the hardest decision as a parent you could ever make. It broke both Rob and me,' she says of taking Kaitlyn for tests at an expensive specialist clinic in Augsburg, Germany without also bringing along her two sons.
'We’d raised enough money to send just one child for testing. But how do you choose?'
Endless nights spent crying about abdominal pain coupled with Kaitlyn's growth problems, anaemia and swollen lymph nodes, led Adelle and Rob to choose to have their daughter tested first...
She and Rob however, have now sold their family home and moved in with relatives, so that both Dexter and Josh can be tested for the disease...
Telecom tycoon Caudwell, who turns 63 next week, strongly believes that the disease - which can cause chronic fatigue, facial paralysis and, in the worst-case scenario, heart failure - is endemic, and that hundreds of thousands of people could also be suffering undiagnosed like the Huckins family.
He argues that if an entire family like his can be infected, the disease must be both sexually transmitted and passed from mother to child in utero, and - furthermore - that it could be the root cause of multiple other illnesses including ME, Alzheimer’s and multiple sclerosis.
'I believe it is one of the greatest threats to public health in our time,’ he says. ‘It’s the new syphilis. Syphilis - before they were able to treat it - was a massive killer that caused a whole range of illnesses.’
He is ‘certain’ that his family were not all separately bitten by infected ticks, the theory offered up by medics. ‘It’s almost impossible. And we haven’t lived together for 20 years,' he says of his three children and first wife Kathryn McFarlane.
Read more: http://www.dailymail.co.uk/femail/article-3259299/Lyme-disease-mum-says-infected-husband-children-doctors-won-t-believe-billionaire-John-Caudwell-reveals-family-s-battle-illness.html#ixzz3nuErm4bh
“When my two youngest children, Bella and Anwar, were diagnosed with chronic Lyme disease in early 2012, watching my babies struggle in silence in order to support me in my journey, struck the deepest core of hopelessness inside of me,” she says.
ReplyDeleteShe then continues, “This award is for Anwar and Bella. This is my token and my promise to you that I will not allow you to live a life of pain and suffering. I will walk to the end of the earth to find a cure so that you can live a healthy life that you deserve. No child should suffer the way that you do.”
Yolanda has been very vocal about the effects of the disease in her blog, citing how she has “lost the ability to read, write, and even watch TV.”
On the other hand, Gigi Hadid talks about her family’s condition in tears. “It’s been really hard for me because I am the only one who doesn’t really understand it,” she says.
In the past 12 years, the number of Lyme disease cases has quadrupled worldwide and continues to be a puzzle in the medical research as there is no known clear treatment for the disease.
- See more at: http://preen.inquirer.net/15222/bella-and-anwar-hadid-suffer-from-lyme-disease#sthash.OicSLPSR.dpuf
For years, Eva Sapi was an ovarian cancer researcher, first as a post-doctoral researcher at the Yale School of Medicine and then at University of New Haven.
ReplyDeleteThen, she had a nasty bout with Lyme disease, a “horrible disease” that, as she put it, “made me realize that other diseases could be as important as ovarian cancer.”
Her own experience with an often-misunderstood disease that in her case initially was misdiagnosed changed the course of her professional life...
Together, they do groundbreaking research into the way borrelia burgdorferi, the bacteria that causes Lyme disease, can rearrange its structure, including by forming a slime-like “biofilm” that she believes enables the disease to “hide” during efforts to treat it with antibiotics.
The research investigates ways in which biofilm might allow borrelia to resist harsh environmental conditions such as antibiotic treatments.
Sapi’s work includes clinical trials with Curza, a Provo, Utah, pharmaceutical research company developing a new drug that aims to penetrate the biofilm to more effectively treat the disease.
Having done an initial clinical trial at UNH that found the drug to be 60 percent more effective in treating Lyme disease than traditional antiobiotics, Curza now is entering a second phase that at the University of California, Davis that will test the drug on mice...
Sapi’s research on the role of biofilm — which she says is “known to be almost impossible to eliminate it from the body” — has been controversial, with many of the doctors who treat Lyme disease continuing to do with a maximum of four weeks of antibiotics.
“After that, if you’re still sick, it has to be something else,” she said, describing the prevailing feelings that attribute any post-treatment sickness to something called “post-Lyme syndrome.”
Sapi first published research on her findings in 2012 in the online publication PLOS-ONE, a peer-reviewed, international science journal. She said that at one point, she organized a conference that some others in the field tried to shut down because of fears that it would propagate her way of thinking.
She currently is waiting for a new research paper, now in a second level of review, to get accepted “in a highly-rated journal.” The paper argues “that biofilm exists, can persist in the body and can find ways to hide,” she said.
http://www.nhregister.com/health/20151011/university-of-new-haven-professors-research-focuses-on-horrible-lyme-disease
Researchers have been working on a treatment for Lyme disease that uses a more atypical approach to fighting it. Reportedly, the results from the testing so far have been auspicious.
ReplyDeleteAccording to NBC News, the researchers have been formulating a prevention for Lyme disease that will build up the immune system in order to fight it off. Specifically, they have been working on a “lab-engineered antibody” that will protect against the disease for an entire season. During testing on lab mice, the mice were totally protected against the bacteria that causes Lyme disease, the Borrelia bacteria.
The antibody that makes this all possible is called a monoclonal antibody. The research team made it clear that this prevention method is not a vaccine. Dr. Mark Klempner, who is from the University of Massachusetts’ nonprofit vaccine development branch, MassBiologics, explained the difference between a vaccine, and the antibody that was created by the research team...
This particular Lyme disease prevention is supposedly superior to vaccines. Where vaccines aid in the creation of antibodies that are used to fight the disease, this antibody specifically targets the bacteria that causes Lyme...
After reaping the antibodies from those mice, the research team injected the antibodies into new mice. Once the new mice received just one injection of the monoclonal antibody, they were immune to large measures of the Borrelia bacteria, and even bites from ticks who were carriers of Lyme disease.
Klempner indicated that MassBiologics is making preparations to be able to test their monoclonal antibody on human subjects by next year. He also said that it is the goal of the university to be able to produce the antibody and provide it to the public at an affordable price
http://www.inquisitr.com/2485280/researchers-have-developed-a-lyme-disease-treatment-that-will-prevent-infection/
Julie Ambrosino’s grinding fatigue has eased a bit, and her brain doesn’t feel quite as foggy. But when she went grocery shopping recently, she was overwhelmed by dizziness as she looked up at a shelf of soup cans.
ReplyDeleteWhat started six years ago as strange muscle and joint pains mushroomed into a constellation of debilitating, chronic symptoms. The once-active Dover mother and businesswoman has since traveled what she calls the “dark alley” of Lyme disease, hunting for doctors who might help.
That odyssey led her to Spaulding Rehabilitation Hospital in Boston, where Ambrosino is among the earliest patients in a new center that focuses on residual effects of the disease, which can impair daily life long after the first symptoms arrive.
“To my knowledge, there is no other place in the country that is focused on rehabilitation of these patients,” said Dr. Brian Fallon, director of the Lyme and Tick-Borne Diseases Research Center at Columbia University...
“So many doctors don’t want to acknowledge the chronic form of this disease,” said Ambrosino, who estimates she visited 30 specialists and underwent 150 blood tests searching for answers before coming to Spaulding. “I live 24/7 in this varying state of unwellness.”...
Yet Lyme specialists are sharply divided about the source of these lingering symptoms, not to mention how they might be treated.
There is no definitive test to diagnose post-treatment Lyme disease. Recent research from Northeastern University suggests the bacterium that causes Lyme may form dormant “persister cells” that evade antibiotics. Other researchers say antibiotics wipe out the infection, and the lingering symptoms are from an autoimmune reaction or nerve damage from the initial infection.
At Spaulding, the two specialists who direct the new center are pushing past the debate because, they say, they have encountered too many patients who simply need help.
https://www.bostonglobe.com/metro/2015/10/11/for-lyme-disease-patients-new-approach-aims-ease-residual-effects/Dzq8hZni6BoBiKZ99eq20O/story.html
Bob had visited a total of 15 doctors after experiencing “wild symptoms” following a serious fall on black ice. Friends commented about mechanical problems and Bob was even diagnosed with occipital neuralgia after receiving treatment with little benefit, but he eventually discovered an unusual diagnosis from a local doctor in Kentucky: chronic Lyme disease. This came as a surprise to Bob because he didn’t have the typical Lyme disease symptoms of swollen joints, fever, bull’s-eye rash, and didn’t recall a tick bite. After finally learning what was causing his health decline, Bob’s next step was to find the best place to treat him. He ultimately chose treatment in Scottsdale at Envita Medical Center, where he reports much higher energy levels and a great increase in his health. A video of his experience can be found here.
ReplyDelete“Many of our patients don’t even know they have Lyme disease,” says Dr. Dino Prato, the founder of the center, “and Bob was no exception. Our doctors and medical staff specialize in a Unipathic approach to Lyme disease, but many healthcare professionals lack experience with Lyme disease, so it’s really no surprise that he struggled to find the right diagnosis and treatment for as long as he did, as many of our patients do. We are just glad that we had the opportunity to help him.”...
Bob is just one of the many patients that have chosen Envita for their Lyme disease treatment over the years. The medical center is one of the leading Lyme disease treatment facilities in the United States and employs a unique approach that comprehensively addresses all of the factors of the disease.
http://www.marketwired.com/press-release/chronic-lyme-disease-patient-failed-15-doctors-finally-finds-positive-results-scottsdale-2062861.htm
The man behind Phones4U says he, his ex-wife Kathryn McFarlane, (58), daughters Rebekah (35) and Libby (27) and son Rufus (20) have recently been diagnosed with Lyme disease - a bacterial infection that can cross into the nervous system and brain.
ReplyDeleteUntil now it was thought that the disease could be contracted through a tick bite carrying Borrelia burgdorferi bacterium.
But Caudwell (63) strongly believes that the disease is endemic and that hundreds of thousands of people could be suffering undiagnosed.
He says the fact that he and his entire family have it is indicative of the fact that the disease must be both sexually transmitted and passed from mother to child in utero.
Lyme disease can cause chronic fatigue, facial paralysis and, in the worst-case scenario, heart failure. If diagnosed, treatment is available, but there is great controversy about the way tests are carried out on the NHS, with many sufferers having to go abroad to get their diagnosis confirmed so that they can begin treatment.
Caudwell also believes it could be the cause of multiple other illnesses, including ME, Alzheimer's and multiple sclerosis.
His theory goes against current medical thinking, but Caudwell is so convinced that he has pledged millions for research.
He has a Facebook page which has been inundated with people messaging him with what he says are "hundreds of cases of medical neglect and misdiagnosis of Lyme disease"...
Caudwell had his family's tests carried out in Germany, where many people from here have tested positive after receiving negative tests on the health service. Jason paid for tests in a clinic in London, which were sent to California and Germany - both came back positive for Lyme disease...
"How many people have been left paralysed, blinded or dead because they weren't diagnosed? It is like a cancer, if it is left untreated it will spread. To live with it is a torment.
"I think it is a situation that will eventually blow up as very few people understand the facts - and that includes people in the medical world."...
With little or no support from the health service, she sought diagnosis through a private clinic in the UK, with tests for Lyme carried out through specialist labs in America and Germany returning a positive result.
"I was suffering symptoms for two years before I had a diagnosis and the stress was mounting" she says.
"I was referred to a health service clinic based on my private diagnosis and waited three months for an appointment.
"In January of this year, I attended the appointment, presented my Lyme diagnosis and implored the doctor to help me - I desperately wanted to halt the disease.
"I explained that I had been fit and healthy all my life and that I knew I had Lyme disease, due to tick exposure and clinical symptoms, which had reached an advanced stage with predominant neurological involvement.
"I requested IV treatment for the best chance of a good recovery. There was some sympathy, but resolve that I most likely did not have Lyme disease. I was prescribed a low dose of oral antibiotics as a precautionary measure and told that my case would be reviewed in a few months.
"I was distraught and felt I had achieved nothing."
“I was lucky because I had a great GP who was Lyme literate and who was aware of the treatment I needed. He had all the information from the specialist and that was a big bonus for me which I really appreciated.”
The treatment, which includes antibiotics, greatly improved Olive’s symptoms and a couple of years later when a similar conference was being held in Dublin, she again attended and had the chance to have her bloods tested for a second time in America and Germany.
These tests also confirmed that there were still traces of the Borrelia disease in her body.
http://www.independent.ie/irish-news/irish-man-convinced-tens-of-thousands-of-people-have-controversial-lyme-disease-31605861.html
Anne and four of her daughters from Lake County, California suffered with Lyme disease for years before a good friend’s referral to Envita for treatment greatly improved their lives. Anne had been lured into a false sense of security due to internet misinformation, which caused her to mistakenly believe that ticks cannot transmit Lyme disease if they are removed from the body before 24-36 hours -- which is far from true. The compelling testimonial can be found on YouTube here.
ReplyDeleteAfter coming to Envita, it was found that both Anne and her four daughters each had a different expression of Lyme disease. One daughter had back pain, another had headaches, and one was almost in a wheelchair because of her symptoms. As for Anne herself, she suffered from heavy brain fog. As a result of her family’s Lyme disease treatment at Envita, Anne says, "I don’t have brain fog anymore…I could feel it leaving. My clarity is so much better and everything here has been wonderful. They gave us information and you learn so much from the patients. Around week 7 my daughters started getting better. It was so wonderful as a parent to see that."
Anne didn’t want just any old treatment for her chronic Lyme disease. According to Anne the reason she ultimately shied away from the standard treatment for Lyme disease is that, "Other doctors don’t hit Lyme disease very hard and I didn’t want to just try some supplements and do a little bit of medicine here and there." At Envita, she was able to receive much more comprehensive treatment. Anne says that, "I would definitely say Envita changed my life because I was really unhappy…my life was falling apart and I couldn’t find out why. My doctors helped in many ways, not just with Lyme and the other patients were a great support group as well."
http://www.military-technologies.net/2015/10/14/anne-and-4-daughters-find-lyme-disease-treatment-success-at-dr-dino-pratos-envita-medical-center/
Video: https://www.youtube.com/watch?v=LvbV_E34pGU