Friday, June 26, 2015

Alternatively diagnosed chronic Lyme syndrome

Detailed clinical and laboratory evaluation cannot distinguish alternatively diagnosed chronic Lyme syndrome (ADCLS) diagnosed by alternative laboratory methods from chronic fatigue syndrome (CFS), according to a case-control study published online June 16 in Clinical Infectious
Diseases. The investigators note that symptoms of ADCLS are often similar to those of CFS, and that the incidence of Lyme disease is low in British Columbia, where the study took place.

"Amongst patients reporting a diagnosis of Lyme disease, we observe four distinct groups, largely differentiated by the method of diagnosis," write David M. Patrick, MD, from the School of Population and Public Health, University of British Columbia, and the British Columbia Centre for Disease Control, both in Vancouver, Canada, and colleagues. "One of these is the controversial category of [ADCLS], in which diagnoses are made on clinical grounds supported not by testing at a regional reference laboratory, but rather by western blot testing performed at an American non-reference Lyme specialty laboratory (Lab A). Such tests have been the subject of warnings with respect to their accuracy, offer no benefit in finding Lyme disease when it is present, and may produce false positive results for more than 50% of people without Lyme disease who are tested."

The investigators compared 13 cases with ADCLS, of whom 12 were diagnosed by one alternative US laboratory; 25 cases with CFS; 25 matched healthy controls; and 11 controls with systemic lupus erythematosus. Measurements included history and physical examination, screening laboratory tests, seven functional scales, reference serology for Lyme disease using CDC criteria, reference serology for other tick-associated pathogens, and cytokine expression studies...

Reference laboratory testing did not confirm positive Lyme serology in any of the ADCLS cases. Furthermore, the groups did not differ in distribution of positive serology for other tick-transmitted pathogens or in cytokine expression...

"Lyme disease diagnosed by alternative laboratory methods is indistinguishable from [CFS] by detailed clinical and laboratory evaluation," the study authors write...

"Those diagnosed with ADCLS deserve comprehensive work-up and care," the study authors conclude. "Many will meet case definitions for CFS and should be included in studies employing metagenomics, transcriptomics and other approaches in the search for a more plausible etiology."


Patrick DM, Miller RR, Gardy JL, Parker SM, Morshed MG, Steiner TS, Singer J,
Shojania K, Tang P; Complex Chronic Disease Study Group. Lyme Disease Diagnosed
by Alternative Methods: A Common Phenotype with Chronic Fatigue Syndrome. Clin
Infect Dis. 2015 Jun 16. pii: civ470. [Epub ahead of print]


  1. "I was in Los Angeles, literally, like the worst time in my life and I was seeing, like, every specialist and literally, the top doctors, and they were so stupid, and they would pull up their computer and be like, "chronic fatigue syndrome," or "Why don't you try to get out of bed Avril, and just play the piano? Are you depressed?'" Avril says in tears. "This is what they do to a lot of people who have Lyme disease. They don't have an answer for them so they tell them, like, 'You're crazy.'"

    Avril says that she's been taking antibiotics and getting lots of rest to combat the disease. She reveals she's halfway through her treatment, and "doing a lot better." She is expected to make a 100 percent recovery.


    The singer experienced death like symptoms such as choking sensation, inability to move or talk coherently. The main issue is that Lyme’s disease is a tough nut to crack and might feel like a severe case of flu. There might be mood swings, fatigue, weakness or red rashes similar to a mosquito bite...

    Lyme disease has claimed many celebrities as its victim and this includes the Real Housewives of Beverly Hills star Yolanda Foster. Even Richard Gere, the famous star of hit Hollywood movies had to delay filming when he contracted Lyme’s disease in 2007. Luckily for him, his case was diagnosed fast and he was treated and was well on the road to recovery soon.


  2. I wrote a piece last week explaining why Avril Lavigne probably did not have Lyme disease. Dr. Mehmet Oz apparently disagrees. A segment on today's show was devoted to Lyme disease. He starts with very accurate information, almost word for word from the CDC web page. The timeline of the disease and the symptoms he mentions all match with reality.

    I was rather impressed. Everything seemed to be going so well. Then when he mentioned how doctors prescribe antibiotics I could actually see him turn into a snake oil salesman right before my very eyes. He said antibiotics don't work on many people with lyme. Sorry "Doc". "For early Lyme disease, a short course of oral antibiotics such as doxycycline or amoxicillin is curative in the majority of the cases. In more complicated cases, Lyme disease can usually be successfully treated with three to four weeks of antibiotic therapy."...

    The "expert" Oz brings on next to furthur misinform his viewers is Dr. Alexander Van Tullekan...

    Alex starts by explaining that doctors might miss up to 30% of patients. This is extremely misleading information. The tests are extremely accuracte, when used correctly. The tests do not typically come back as positive until four to six weeks have passed, at which time antibodies in the body have developed. The 65% effective rate often quoted by the "chronic lyme" movement includes a lot of early testing.

    Alexander goes on to say that the bacteria can hide in the body and become difficult to find after proper antibiotic treatment. Let me make this clear. He is not claiming that the bacteria has become resistant to antibiotics. Even though it hasn't, that at least would have been a series of words that belong together to form a coherent sentence. No. The twin that stayed in the shallow end of the gene pool thinks that bacteria are playing a game of hide and go seek with real doctors.

    Instead of providing any studies or arguments to support his claims, he just calls the international medical community closed minded. Just like Big Tobacco on cigarettes, Big Organic on GMOs, and Big Placebo on vaccines, Alex chooses to ignore the massive amount of research already done and just demand that more research be done.

    As usual Dr. Oz did manage to lower the bar on science even furthur by ending the segment asking everyone to take part in the Lyme Disease Challenge. You can now immediately tell the lack of scientific knowledge someone has online by whether or not they have posted a picture of themselves taking a bite out of a lime to fund organizations that wish to pass laws to unrestrict antibiotic overuse.

    Imagine how much money we could put towards real diseases if only people would stop funding imaginary ones.


  3. According to TMZ, Foster has had both the implants removed and is already feeling better.

    Doctors believe that the silicone leak may have been exacerbating the symptoms of Foster’s Lyme Disease. Diagnosed with the disease three years ago, Foster’s condition recently became so serious that it interfered with her ability to read and write.

    The star of the Real Housewives of Beverly Hills has been documenting her fight against the disease on social media.

    Earlier this year, she shared her efforts to treat her illness through a stem cell transplant, hyperbaric oxygen threrapy, Chelation therapy, and a number of other procedures.

    Though the removing the implants will not cure Foster, she hopes that it will help lessen the severity of her symptoms and make the disease more manageable.
    (editor's note: Let's hope so!)

  4. When I first heard Duke University physician and cancer researcher Neil Spector talk about his Lyme disease ordeal, my heart skipped a beat. Spector had gone undiagnosed for years, he said, which had led to persistent poor health and a rare but serious complication that resulted in a heart transplant.

    His story scared me. Earlier that week — this happened last spring — I’d picked up my daughter from college. Her bout of Lyme disease when she was 8 had gone undetected for a year, and although we had followed the prescribed treatment (a month of antibiotics), she would spend the next 12 years with seemingly disconnected and random aches and pains: Her joints would hurt, her eyes would blur, fatigue would overwhelm her. She suspected, she told me after leaving her dormitory, that she had chronic Lyme disease...

    But other professional and patient groups, such as the International Lyme and Associated Diseases Society, claim that these symptoms indicate chronic Lyme, the result of ongoing infection by the bacteria that cause Lyme. Such patients, according to self-described Lyme-literate doctors, may benefit from long-term, high-dose antibiotic treatment and even IV antibiotics, to rid the body of lingering bacteria. Clinical studies, however, show no evidence that such treatment is effective; what’s more, it can be unsafe...

    Paul Auwaerter, clinical director for infectious disease at Johns Hopkins, said he sees people “who have puzzling or medically hard to understand symptoms. We don’t have precise definitions for problems that might include chronic fatigue, musculoskeletal pain, poor and unrestorative sleep, subjective neurocognitive dysfunction, or ‘brain fog.’ ”

    He said that Lyme disease “is capable of inflicting these symptoms on previously healthy people — not a large number, but a small minority develop a post-infection syndrome.”

    There are no tests for this ongoing condition. And no real treatment. “What is the right approach to this?” Wormser asked. “We don’t have guidelines for medically unexplained symptoms. It is frustrating, and it is hard to fund research on this. I tell patients that doctors are really good at diagnosing severe, life-threatening cancer, or lupus, or renal failure. But doctors in general have a hard time putting a specific name on symptoms that are quality-of-life-threatening but not life-threatening.”

    Wormser said that many people who come to him for help with what they describe as chronic Lyme have no evidence of ever having been infected with it. He does not doubt the reality of these patients’ suffering, but in the absence of a positive Lyme blood test, he does not believe antibiotics are an appropriate treatment...

    It’s important for people to press on, even if a doctor dismisses them. When I told Spector what my doctor had said, he exclaimed, “If you see a doctor who tells you something never happens, you need a new doctor. No one is that omnipotent; no one has the knowledge of human biology and pathology to make a statement like that. Saying that is the antithesis of what medicine is about.”

    “The issue is emotionally charged on both ends — from established, ivory-tower academics who believe there is overtreatment in the Lyme community to the charlatans preying on patients,” he said. “The community says that the academics don’t see their real-world experience. Neither side sees the shades of gray in medicine, where nothing is black and white.”

    In the meantime, Spector said, “we have people like your daughter, like me, people who feel lousy from all sorts of things, who don’t fit into algorithms that have a bar code associated with it. They fall between the cracks. People like us defy medicine as an exact science.”