Author | LymeDisease.org
Drs. Janet and Felix Sperling of the University of Alberta published an entomology study on Lyme disease in Canada that is worth a read, especially if you believe that Lyme stops at the US border. Did you know that Lyme has now been recognized in every province in Canada? And that infection rates of ticks are 12.5%? More fast facts after the jump.
Author Laurie Edwards explores how to best cope with chronic illness in your Twenties and Thirties.
In a press release issued at the end of last year, the IDSA called on the US and European Union to develop 10 new antibiotics by the year 2020. IDSA President Richard Whitley said that “creating a stable research infrastructure for antibiotic development” was essential to provide physicians with the tools necessary to effectively treat patients. That’s good news for the Lyme community because unacceptably high treatment failures occur with all current antibiotics used to treat Lyme disease and the rate of development of new antibiotics has been low. Pharmaceuticals have not been interested in developing new antibiotics because they do not generate the level of profit that drugs that are taken by a broad demographic over the course of a lifetime, like cholesterol medication, do. This is the good news. Now for the bad news.
You’ve all heard that the latest drum-roll from the rheumatologists at the IDSA hearing was essentially to say that Lyme patients have persistent symptoms and they started off with infection, but now we don’t “believe” in persistence—so what do you call it? How about “medically unexplained symptoms” or MUS for short? All of this seems to regard the real problem with Lyme disease as being what you call it. But patients know the real problem with Lyme disease is how you treat it, how you cure it, how you restore patients to their lives. Disease definitions like MUS are for drug-makers who sell drugs to a market, physicians trying to claim professional turf, and insurers trying to deny treatment reimbursement. They are not for patients. Abraham Lincoln had it right when he said: “How many legs does a dog have if you call the tail a leg? (Answer) Four. Calling a tail a leg doesn't make it a leg.” I’m not the only one who finds these acronyms aggravating and unhelpful. A post from the internet nails it:
I had to post this image and encourage anyone interested in biofilms to go visit the website that hosts this interactive introduction to biofilms. Some of you know that biofilms have been implicated in Lyme disease. Drs. McDonald and Sapi recently published on this topic. The gist of the matter is that biofilms may be one of the ways in which bacteria persist in the body. They can provide a protective covering that antibiotics cannot penetrate. It’s a pretty esoteric subject matter, but this website describing how they work is pretty down home. Give it a visit if you get a chance. And, kudos to the University of Montana for making this available to folks like us who just need simple explanations so we know how things work! The link is after the jump.
Buddha once said “a dog is not considered a good dog because he is a good barker. A man is not considered a good man because he is a good talker.” I would take it a step further and say “a doctor is not considered a good doctor because he is a key opinion leader.” No. The essence of a good dog is loyalty. The essence of a good man is his moral character. And, the essence of a good doctor is his ability to heal the sick and restore health. This can’t be done without holding the patient’s interest paramount. Patients and the concerns of patients are the core element around which medicine is organized. Without patients, there is nothing for medicine to address. Without treatment approaches that restore health, or failing that, improve patient health, medicine becomes a meaningless exercise in capitalism. How do we ensure that patient’s interests come first in treatment guidelines?
The IDSA hearing results were expected by the year end. Then were delayed—until “after the first of the year”. Perhaps the delay was caused by Dr. Duray’s resignation from the panel due to personal illness. We don’t know because we have not been told the reason for the delay or how long the delay will be. Patients are on tenterhooks awaiting the results and with good cause. Revision of the IDSA Lyme guidelines could make a world of difference for Lyme patients. According to a CALDA survey, 53% of patients with chronic Lyme have been treated according to the IDSA Lyme guidelines and 90% of these were not restored to health under the IDSA protocols. Isn’t the point of treatment guidelines to improve patient outcomes? And, if they don’t, shouldn’t they be revised?
Antibiotic resistant infections killed more than 65,000 people in the US in 2009. But 70% of antibiotics, which can make animals grow faster, went to cows, chickens and pigs last year. Antibiotics in livestock provide a breeding ground for antibiotic resistant infections that can be passed on to humans. According to a recent AP article, animal fed antibiotics “can develop germs that are immune to the antibiotics. The germs then rub into scratches on farmworkers' arms, causing oozing infections. They blow into neighboring communities in dust clouds, run off into lakes and rivers during heavy rains, and are sliced into roasts, chops and hocks and sent to our dinner tables.”
Thirty-three year old Nani Lauriano Luculescu is a fabric artist with a vision. She wants to create a quilt—perhaps a series of quilts—to give the world a glimpse of what people with Lyme disease go through every day. And she wants YOU to help her do it.
This is a little off topic for my blog, but something that is of high interest to patients. Patients ask all the time about the effectiveness and safety of “expired” drugs. A recent article that appeared in the Medical Letter examines the issue in detail. The article notes that generally manufacture expiration dates merely reflect the fact that the drug is “stable” at that point, they do not reflect when the drug becomes unstable. The conclusion of the article indicates that outdated drugs may be effective and safe for at least 5 years after the expiration. Notable exceptions include liquid suspensions and epinephrine in Epipen, which are not stable over time. The article also notes the following: " There are no published reports of human toxicity due to ingestion, injection or topical application of current drug formulations after their expiration date. Renal tubular damage has been reported after use of degraded tetracycline in a formulation that is no longer available (REF 2)." Other sources contain warnings about expired doxycycline, which may (or may not) be based on this outdated tetracycline warning, but patients may want to check with their doctors when using expired doxycycline to be on the safe side.
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