TOUCHED BY LYME: Sometimes “tick panic” is a good thing
The headline caught my eye immediately: Five reasons to not totally panic about ticks and Lyme disease. The publication: Science News—Magazine for the Society of Science and the Public. The author: Meghan Rosen, a science writer who is also the mother of an infant. She writes:
I thought it was just a scab.
The brown speck clinging to my baby’s cheek had been there for a day or so, resting on a reddish patch of skin. He must have scratched himself, I thought, as I picked lightly at the mark.
My husband was the first to figure out the truth. That little round speck wasn’t a scab at all — it was a tick.
I had recently read a scary article about ticks (complete with scary title: “Be Very Afraid of Ticks”), and I was terrified. We plucked the bug off the baby, stored it in a plastic baggie and popped it into the freezer. But what next? Head to the ER? Get a blood test for Lyme disease? Start him on antibiotics in case he was infected?
Confronted with this situation, Ms. Rosen started looking for information. Unfortunately, she chose to take it only from sources closely allied with one side of a hotly contested medical controversy. I hope for her sake, and her child’s sake, that her lop-sided information gathering doesn’t result in serious illness for her baby.
In her Science News article, Ms. Rosen offers five reasons “to not totally panic.” I take issue with some of them. Her points are in bold print, followed by my comments.
Not all ticks carry Lyme disease.
That’s true. Not all of them do. Some may be free of known diseases, while others may carry a toxic soup of bacteria, protozoa and viruses that may or may not include Lyme disease in the mix. Previously unknown tick-borne diseases are being identified all the time. (Keywords to search: Heartland, Bourbon, miyamotoi.)
The one you plucked off your child was a lone star tick, you report, so you “don’t have to worry about Lyme disease.” (Do a search for Dr. Kerry Clark, of the University of North Florida, and how he has found Borrelia burgdorferi—Lyme—and other Borrelia species in lone star ticks. And find other information about many people who have been diagnosed with Lyme after being bitten by lone star ticks.)
You also say the tick has to be attached somewhere between 36-48 hours in order to transmit Lyme disease. It’s true that this outdated information still resides on some pages of the CDC website. However, one recently updated CDC web page states this: “If a tick is attached to your skin for less than 24 hours, your chance of getting Lyme disease is extremely small; however, other diseases may be transmitted more quickly.”
“Extremely small” doesn’t mean zero. Furthermore, some experts disagree with the CDC about attachment times. One study showed Lyme transmission in as few as six hours. And the sometimes deadly Powassan virus can be transmitted in 15 minutes. So there’s no “comfort zone” when it comes to tick attachment times.
Lyme disease doesn’t always cause the hallmark bull’s-eye rash.
I agree with your statement above and disagree with what you say in the accompanying paragraph. You state that about 90% of kids with Lyme develop a rash at the bite site. Again, that depends on your source of information. The CDC says between 70-80% of Lyme patients show a rash. Other studies put the rate at about 50%. One MD who treats a lot of pediatric Lyme says fewer than 10% of his patients have had a rash.
Lyme disease is generally easy to treat.
That high-pitched wailing you hear is me screaming. The extra scraping and thumping sounds come from my fingernails clawing at my computer and my head pounding my desk. You quote a doctor as saying, “Lyme disease is completely treatable. All the symptoms literally melt away with antibiotics.” There are so many things wrong with that assertion, I don’t even know where to begin.
There are legions of suffering Lyme patients who WISH that were true. Alas, their cold hard experience is very different from that fantasy statement. Pain, fatigue, cognitive disorders, gastrointestinal disturbances, cardiac problems, learning disabilities and psychiatric conditions can all result from Lyme disease.
You also say “few if any people actually die of Lyme disease.” I recommend you do a Google search for “Joseph Elone,” a teenager from New York who got ill after a 2013 camping trip and was told by his doctors that it couldn’t possibly be Lyme disease. Tragically, he soon dropped dead of Lyme carditis, and an autopsy showed spirochetes in his heart. (The diagnosis has been confirmed by the CDC.) I also recommend you Google “Zach Moritz,” a former Boise State basketball player who reportedly died last week of Lyme-related causes.
Ms. Rosen, I agree with your premise that “reasonable concern” is more useful than “super freak out panic.” And I believe that reasonable concern should be based on solid, accurate, complete information. Unfortunately, by only paying attention to one side of the Lyme disease controversy, you do your son and your readers a grave disservice.
I don’t understand why doctors like the ones you quote here seem so complacent about tick-borne illness. A horrific story that’s been in the news lately is the case of an Oklahoma woman who had an unrecognized case of tick-borne Rocky Mountain spotted fever. Unfortunately, it advanced to the stage where she had to have her arms and legs amputated in order to save her life.
If her doctors had been more attuned to the possibility of tick-borne disease, would she still have arms to hug her children?
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide, to be published in September 2015. Contact her at dleland@lymedisease.org.
Those not affected or close with someone that is have NO IDEA the hell in which we live.
How fast it happens to anyone, anywhere.
How your entire life can easily & quickly spiral out of control.
The Lone Start tick is one of the most dangerous tick victors around. I know three people in Texas who got Lyme from the Lone Star tick. I cannot give their names without their permission. Two worked collecting ticks in Texas to test for Bb, so were suited up as much as any scientist could possible know how. Long sleeve shirts, pants, tapped up at all openings, gloves, masks, everything possible. Another did not know she had been bit but found she had Lyme. The common problem all three have, among all the other nasty, horrible Lyme symptoms, is bone deterioration, severe osteoporosis. One went from 6 foot 2 inches to 5 foot 4 inches. This patient looked like a white starving person from Africa that you may have seen pictures of. His body formed S curves as he slumped down. Of course his PCP didn’t know what was wrong. After eight years she believed something was wrong. Fortunately he finally got a Lyme doctor, and was treated for, I think 4 years. The Lyme eventually went into remission, but this patient did NOT get his height back. He is deformed for life. Fortunately his brain was spared and he still does his scientific job looking for infected ticks in Texas. Lone Star ticks are SCARY!!! Again, my assessment, the established medical community, CDC, FDA, NIH, in US, Canada, Australia, New Zealand, and many others are totally Mafia-like, CRIMINAL, and CRUEL!!! You don’t have to listen to me, but you have been warned.
I agree.
CRUEL & INHUMANE is how we are treated.
Left to fend for our own lives.
When ur no longer able to work & have no income or healthcare. Disability denial.
Life is hopeless. http://www.caringbridge.org/visit/slippingaway
I read Lone Star Ticks also carry the STARI disease, a Southern strain of Lyme or possibly another strain of borrelia, depending which study you believe. They can carry a beef allergy, because they fed on cattle for years, before feeding on us. I think I read they also carry Rocky Mountain Spotted Fever. Who knows what else, new TBIs are being discovered all the time. Lone Star Ticks are nothing to mess with. I hope that baby doesn’t get sick. I worry most about infections that can lay dormant and pop up later.
Strange, interesting. I think I had Lyme long before I moved to Texas. However, now I am allergic to beef and all dairy products. I love both, but don’t eat either anymore. ;-(
That baby will suffer, horribly, for her mother’s ignorance.
So very sadly true!!!
OMG! I am shocked that Science News, and otherwise reputable publication, would publish such an article. Odds are someone on their staff knows a friend, neighbor, or relative who has had seen the “other” side of Lyme disease.
Warm CyberHugs to you, Dear Dorothy.
I love everything you write, but this article is a real keeper!
I am looking forward to your new book for parents of Lyme children that will be coming out soon. Is there any way to reserve a copy of it in advance at Amazon?
Please submit this to Science News! Great response. I’m appalled that Science News would publish this. Thanks.
Bb and babesia microti are here in beautiful, wild Florida. I have been mis-diagnosed till I am “chronic.” One infectious disease doc had the audacity to say, “You have a fixation on bugs” to my husband and would not speak directly to me! ALL medical professionals should be required to familiarize themselves w/ bug borne illnesses and how it afflicts the patients in the specialty field they are schooled in. It is especially Heart wrenching when innocent children are in the middle of this “Hear no evil…See No evil” mentality! May the fleas and ticks of a thousand asses and camels lite upon the unbelievers.”
So would that be the ticks crawling from one onto another.
I don’t think doctors know anything about any bugs of any kind. When my children came home from school with lice because of a public infestation, I went to the doctor. The doctor had no idea what to do. I was told by the school principal to shave their heads. For some reason I remembered to call the county department of agricultural. Up until then I had only heard of lice, never seen them. They told me about Rid, which worked. All I am saying, is that doctors, especially IDSA docs, are pretty ignorant, not only about Lyme. I know, I know, Rid is not as effective as it used to be. In 2012 there was a motel, hotel infestation and when we had to travel I asked every place we stopped what they had done about the lice infestation. They all knew about it and told what they had done. We never had any problems. i also learned to quickly pull back sheets and check for blood specs to help detect for lice when traveling. Vets know more than doctors of any kind.
Awesome post, Dorothy, and I’m joining you with the high pitched screaming and fingernail scratching all the way from Wisconsin where every other person has MSIDS. There are far too many myths that need to be dispelled. I guess we too are going to have to show up at an airport with hazmat suits on and placards saying, “The CDC is lying to you.” Perhaps then we will be noticed. But, alas, many things like that have been done already to little effect.
As to what ticks carry what – this is a head scratcher is it not? I always chuckle when people tout this and say to them, “Yes, the really bad ones wear little black hats.” As to transmission – I want to know the studies. Who sat there and tested thousands of ticks attacked to humans and checked the transmission speed and rate. Oh – gee, that would be impossible as ALL THE TESTS SUCK.
I once asked one of the most experienced LLMD’s in WI what he would do if a child got bit by a tick. Without a pause he said, “Start them on antibiotics.” Now, while it may not be everyone’s choice to use antibiotics the point is that treatment must start immediately if they hope to get on top of this. Far too many let symptoms smolder until they are so bad they are disabled. These are tough cases as MSIDS has traveled everywhere making treatment at this point much more complex.
https://madisonarealymesupportgroup.wordpress.com
Madison Lyme Support Group
Alicia
I wish we had a way to put stars or thumbs up on these comments because i would put at least a thumbs up for your complement to Dorothy. Dorothy does a great job. I am more impressed because Lyme really keeps me down and I find it so difficult to accomplish anything now days.
GMD,
I need a way to contact you privately because we are working on our legislative goals for Texas, and I think you could help advise us since it appears that you are now a Texas resident also. (I’m in College Station, home of TAMU, where there is a lot of Lyme research going on at our state’s vet school.) Please contact me privately via e-mail: texlyme-mom-at-yahoo-dot-com.