CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Just wanted to let Chicagoland people know about a terrific article on lyme disease that appeared in the Health & Family section of Wednesday's paper titled "Lyme Disease on the Uptick: Controversy lingers about its long-term debilitating effects."
The article was up-to-date and spoke about Claritin starving borrelia of manganese which it needs to thrive. It also mentioned some latest research and the need for clinical trials.
"Despite the suffering caused by Lyme, increased public awareness and legislation like the Tickborne Disease Research Transparency and Accountability Act of 2014 will help scientists get tests and treatments to the market, said the experts."
Posts: 1954 | From Illinois | Registered: Aug 2007
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Tincup
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Do you have a link to it so we can read it? I'd love to.
The reason why is the Chicago Tribune has historically NOT be good to us. And that quote you shared- I'd like to know who the "experts" are and if they are referring to the Lyme bill that was stuffed into the Cures 21st Century Act, or something else from 2014.
If the "experts" quoted are not from our community- it is another reason NOT to encourage passing that bill.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Adding a link to CherylSue's article find, this link took an inordinate amount of searching. The Chicago Tribune is not easy to begin with if one is not a subscriber.
Once I figured out how to get into their site, no search within Chicago Tribune's website would list this. As if it did not exist.
Then, the usual search methods at Google Advanced just did not work. Finally, with the first half of the article title, and somehow having stumbled upon the author's last name, it lead to link below.
Even this is very hard to read. I've never seen a webpage like this before. It moves left or right and no way to copy & paste.
Personally, I think they greatly oversimplify and shy away from what "chronic lyme" can really become (or how complex the treatment must be) but it is a short article and certainly can't be all things to all people.
Real excitement, though, in trying get ticks to get rid of lyme within their own tick bodies.
New tests are also discussed.
Also good is they talk about coinfections. Few articles bother to do that. Overall, a good step. Glad to see this.
"Lyme Disease on the Uptick: Controversy lingers about its long-term debilitating effects."
By Leslie Mann (freelance reporter) - Chicago Tribune - Health & Family section - August 12, 2015 - p. 53 -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thanks for finding it. I looked but couldn't find it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Ann-Ohio
Frequent Contributor (1K+ posts)
Member # 44364
posted
Got it! (I split it up for easier reading.)
Controversy lingers about its long-term debilitating effects
Chicago Tribune12 Aug 2015By Leslie Mann Tribune Newspapers Leslie Mann is a freelance reporter.
Mary Dell Harrington, 59, of Larchmont, N.Y., considers herself lucky. In 2009, she caught Lyme disease from a tick bite, but she recovered after taking antibiotics.
“I never saw the bite or the (hallmark) Lyme bull’s-eye rash,” said Harrington. But her doctor recognized her fatigue, nausea and fever as common symptoms.
Not everyone is as fortunate. Some Lyme victims are diagnosed late. Others are misdiagnosed.
In 2012, the U.S. Centers for Disease Control and Prevention said 30,000 Americans get Lyme each year. In 2013, it moved the comma to 300,000. Many doctors want the comma moved again.
“I see new Lyme patients ever day. Multiply that by the number of doctors,” said Dr. Richard Horowitz, Hyde Park, N.Y., internist and author of “Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease.”
Named for a Connecticut burg where cases were identified in the 1970s, Lyme is caused by a bacterium that sounds like something your Italian grandmother makes for Sunday dinner: Borrelia burgdorferi.
The carrier, the deer tick, bites a Lyme host, usually a rodent. Then the tick bites a human and passes on Lyme.
As Lyme spreads from concentrated areas on the East Coast, it has become a political debate between the IDSAs and the ILADSs.
The IDSAs use the Infectious Diseases Society of America guidelines, which say Lyme is not chronic.
“Most (Lyme patients) respond to antibiotics and get better,” said Dr. Marc Tack, IDSA member and infectious diseases director at HealthAlliance of the Hudson Valley in Kingston, N.Y.
“Chronic symptoms like joint pain or fatigue can mean a lot of things other than Lyme: arthritis, MS, mononucleosis; the list goes on.”
The CDC agrees. Some Lyme patients “may have suffered longterm damage to the nervous system or joints,” says its website. They have “post-Lyme disease syndrome,” not “chronic Lyme disease.”
The ILADSs (International Lyme and Associated Diseases Society), on the other hand, say chronic Lyme is real and its victims need “Lyme-lit(erate)” doctors who employ long-term antibiotics.
Supporting these docs are an army of patient-advocacy groups, patients-turned-spokespeople like Katina Makris, of Peterborough, N.H., the “Under Our Skin” documentary and celebrities who recount their Lyme battles.
“Lyme is real,” singer Avril Lavigne told “Good Morning America,” but her treatment followed months of doctors telling her she was “crazy.”
Despite the polarization, though, the two camps agree on these points: We can’t view Lyme in isolation because Lyme-carrying ticks are cesspools of other bacteria that cause “co-infections.”
We need better diagnostic tools and treatment for the whole cesspool. Research is underway but underfunded.
“Lyme is where AIDS was in the ’80s, when people were too busy blaming the victims,” said Holly Ahern, microbiology professor at SUNY Adirondack in Queensbury, N.Y., and vice president of LymeActionNetwork.org . “AIDS moved on, and Lyme needs to move on from the political arguments.”
Diagnosing Lyme is not easy. You may get a rash, headache or fever. But if you aren’t treated soon after your tick bite, all hell breaks lose. Chronic Lyme symptoms vary from “Lyme (brain) fog” to facial paralysis and may be intermittent.
“Lyme mimics diseases, including rheumatoid arthritis, chronic fatigue syndrome, fibromyalgia, Alzheimer’s,” Horowitz said. In his book, he offers a diagnostic map to rule them out.
Lyme tests are the enzyme- linked immunosorbent assay and the Western blot. They detect antibodies (the body’s disease fighters), not Borrelia, and not until a few weeks after your tick bite. If your test is negative, your insurance may deny treatment, so your wallet hurts too.
The two tests often contradict each other, explained Dr. Neil Spector, of Chapel Hill, N.C., a Lyme victim, in his memoir, “Gone in a Heartbeat.” “My ELISA was positive, but my Western blot was negative,” he said.
The lab that issued his “negative” Lyme diagnosis didn’t consider his symptoms, he said, which included years of heart arrhythmias.
Once you have Lyme, you can test positive for years because your body has antibodies, just as you have measles antibodies decades after you gave measles to your sister.
The antibodies tests are wrong so often, “you might as well flip a coin,” said Dr. John Aucott, who is developing a Borrelia test at the new Lyme Disease Clinical Research Center at Johns Hopkins University School of Medicine’s rheumatology division.
One obstacle is the amount of blood needed to find Borrelia, said Dave Ecker, vice president of Carlsbad, Calif.-based Ibis Biosciences, “because it likes to hang out in tissue, not blood.”
So Ibis is using a spectrometer to find it in as little as a tablespoon of blood. The next step is to do clinical trials.
TGen Research Institute in Phoenix is using “next-generation sequencing” to identify Borrelia through DNA. “It’s the same technology used by 23andme.com to find your family history, but we’re looking at Borrelia,” said Paul Keim, director of pathogen genomics.
Next, TGen will determine the best test specimen to use: blood, tissue or urine.
The current Lyme treatment is a round of common antibiotics. For chronic Lyme disease, doctors prescribe long-term doses.
Studies by Kim Lewis at Northeastern University in Boston show that some Borrelia form persister (dormant) cells that evade antibiotics, so the best way to attack them is pulsing (on and off ) instead of continuous use of antibiotics.
“The trick is to give the dormant cells time to wake up,” Lewis said. Now that the idea has been proved in animal labs, the next step is to do human trials.
Scientists at Stanford School of Medicine in Palo Alto, Calif., are taking another approach. After testing 2,000 FDA-approved drugs by computer, they found loratadine (brand name: Claritin) and desloratadine (Clarinex) starve Borrelia of manganese, which it needs to thrive. The next step is to do clinical trials.
“We want to kill Borrelia before it reaches humans,” said Mason Kauffman, CEO of Memphis-based US Biologic. In field trials, its rodent bait reduced Lyme-carrying ticks by 76 percent.
After rodents eat the bait, their bodies create Lyme antibodies. When ticks bite these host rodents, the antibodies kill Borrelia in the tick. The company has applied for a U.S. Department of Agriculture license.
The best Lyme defense is prevention. Use insect repellent. Take a shower after being outside. Check your family and pets daily for ticks. Remove ticks carefully, so you don’t behead them, then swab the bite with rubbing alcohol.
A pest management company can treat your property for tick larvae and nymphs, said Jim Fredericks, chief entomologist at the National Pest Management Association. “Ticks hate wellgroomed lawns but love woods and weeds,” he said.
“Be your own advocate,” urged Marissa Dursin, 27, of New York, whose Lyme disease reduced her from “a very active person to someone who couldn’t string a sentence together.”
Beware the doctor who says, “We don’t see Lyme in this state” because he or she hasn’t read recent CDC maps.
Despite the suffering caused by Lyme, increased public awareness and legislation like the Tickborne Disease Research Transparency & Accountability Act of 2014 will help scientists get tests and treatments to the market, said the experts.
“We’re almost there,” an enthusiastic Kauffman said. “Every day, I can’t wait to get to work.”
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Ann-Ohio
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