Debunking Myths About Lyme Disease September 25, 2009 - 12:00am By Laura Pursel
How shocked was I to receive a text from a friend telling me there was an article about Lyme disease in The Sun? Extremely, but pleasantly. How did I feel after reading this article? Not so pleasant, but also not surprised.
I live in a rural part of New Jersey which has an overwhelming tick population and ever-increasing cases of Lyme disease each year. I have had Lyme disease twice, as has every other member of my immediate family, including my chocolate lab, Moose.
Eight years ago when I wrote my eighth grade term paper on how lyme disease was reaching epidemic status in my area, many people laughed at it, but today awareness is being raised and people are realizing what a problem it really is.
This is why I was at first very happy to see the article titled ``Hold the Twist of Lyme'' featured in last Friday's paper.
As I read the article, I was impressed with what the medical student actually knew about lyme disease, because I have come across numerous doctors -- believe it or not -- who up until a year or two ago would say that they didn't even believe Lyme disease existed, that it was all in the patients head.
I was unsurprisingly disappointed, however, when I read these words: ``The distinctive target rash.'' From both my own personal experience, and also from doctors and offices which specialize in the treatment of Lyme disease, I know for a fact that not every person infected with the Lyme bacterium develops a rash, and also that not every rash presents the typical target rash that was referred to in the article.
The Lyme Disease Foundation (http://www.lyme.org) can provide much more accurate statistics than I can on this matter. They report that only about 60 percent of individuals infected will notice a rash.
This means that about 40 percent of people with Lyme disease do not get a rash. This simple myth about everyone having a rash has caused many people to go undiagnosed, myself included, for long periods of time during which symptoms only get worse.
Most of the doctors I have come across over the years won't even consider Lyme disease a possibility if the patient doesn't have a ``distinctive target rash.'' I personally find this extremely upsetting.
I was also taken a bit aback by the rather short list of symptoms that were listed in the article. Lyme disease has such a wide variety of possible symptoms and affects each infected individual so differently that I feel listing a few flu-like symptoms does not begin to do it justice. Also, stating that, as a fact, if left untreated Lyme disease will progress to meningitis, cerebellar ataxia and peripheral radiculoneuropathies is false.
While, yes, it can, and I have personally seen these symptoms in many people with Lyme disease, it does not manifest this way in every case. The Lyme Disease Foundation's website provides a detailed list of possible symptoms and each area of the body that the disease can affect.
Another quote from the article especially struck a cord with me, causing me to immediately call my mother to describe how livid I was -- ``Medical treatment is simple -- a few doses of the antibiotic doxycycline.'' Treatment of Lyme disease is far from simple. In fact it's almost as difficult to treat as it is to diagnose.
If caught right away, Lyme disease can be easily treated with oral antibiotics; however, if it has progressed, oral antibiotics, in most cases, are not sufficient treatment, and intravenous antibiotics should be administered. Doxycycline is not the only oral or intravenous antibiotic available for treatment, either; there are many other antibiotics available depending on the individual's personal case and health history.
The last part of the article that I found highly upsetting -- but once again not surprising given the myths that most people, especially doctors unfamiliar with the disease, tend to spread -- was the following:
``Some patients who previously contracted Lyme disease and were treated successfully experience chronic symptoms.'' I find this utterly absurd. Once again, from my own personal experience with family and friends, there is no such thing as experiencing chronic lyme symptoms after you have been cured.
If a person is still experiencing symptoms it means they are not cured! The tests available are not 100 percent reliable, and so in many cases patients with symptoms will have negative test results.
Every time I have contracted Lyme disease my initial tests always came back negative. Most doctors familiar with the disease will test patients on a regular basis because of the unreliability of the tests available.
Still, I must commend the author for how he finished off the article. I was impressed by the mention of the difficulty for many doctors to accurately diagnose Lyme disease and the problem that it poses to patients who are suffering. It is a sad truth that many doctors don't know how to properly diagnose Lyme disease, let alone know how to judge the proper course of treatment. Due to this sad truth, people suffer every day with an illness which will only get worse while having some people (doctors included) telling the patient they aren't actually sick, and that they just have psychological issues.
I can't begin to explain how it feels to a 12-year-old child to be told by a doctor, an authority figure trusted with their health, that it's all in their head or they keep contracting the flu multiple times a year and there's nothing that can be done.
No child, no person of any age, should ever have to experience that. Lyme disease is a problem, and I'm ecstatic that it is being talked about more and more, but until the myths dispelled and the truth is told, people will continue to suffer needlessly.
I hope that people read this and visit the Lyme Disease Foundation's website to learn more about it. I hope that this can help to dispel some of those myths. Most importantly, I hope that no one ever has to experience or even witness the things that Lyme disease can do to an individual and to the ones they love.
Laura P�ursel is a senior in the College of Agriculture and Life Sciences. She may be reached at [email protected]. Guest Room appears periodically.
Posted by LisaS (Member # 10581) on :
I truly believe that to win this cause we need to somehow educate healthcare professionals. The public is finally becoming aware, but how do we reach these Drs?
Especially when it has been so ingrained into them that there is no chronic lyme? Maybe start with new residents? They're being taught by the old mainstream docs that don't believe in chronic lyme, soo I don't know.
Posted by 22dreams (Member # 17846) on :
I guess do what we can to support legislation.
As I feel better, I am designing informational postcards and flyers to leave in public spaces (cafes, bulletin boards) in my area.
As Robin in SF pointed out, targeting dog-owners at local dog parks is a good way to go.
I may take it upon myself to mail info to residents of the complex I live in since there have been so-called "vague" complaints from otherwise healthy individuals living there (growing fatigue, aches and pains).
Since I was (re-) bitten last year by a tick from right outside my complex, followed by a cascade of neuro symptoms, I've gotta do something in regard to this.
Our ability is dependent on our health and energy.
MA/NY doctor stated after a screening of UOS, Significant change won't happen until decent Research occurs. Research is First dependent on private funding. When private research piques the interest of government---when there is something in it for them--then they will be more open to public funding. I'm inclined to agree.
Educating our neighbors and community is within our reach though. So ppl can protect themselves and have resources when they are indeed infected.
My community is a hard nut to crack because of the narrow, tunnel vision of academics in this college-dense area.
Posted by liesandmorelies (Member # 15323) on :
I have often thought that it would be nice if we as a group could raise money and put together packets that would include the DVD "Under Our Skin" and Pam Weintraub's Book, "Cure Unknown". We could have members perhaps distribute these packets.
We could give these packets along with Dr. B's guidelines etc...and support group info etc...to local group practices to really get the word out there.
We could deliver them and then folllow up to see what doctors had read the book and or watched the movie.
Also, we could include various news articles and testimony and data showing support of Chronic Lyme Disease and show how the I D S A has misguided our doctors.
We could also include how the basic elisa testing is not accurate and that at the least ppl should be given a western blot whenever Lyme may be suspected. We could include info form IGeneX, while also explaining at the same time that a clinical diagnosis is what matters most.
We should include data and details regarding the science behind the testing and make sure they realize that many bands are omitted from mainstream tests.(you would be surprised how many ppl don't realize this).
Just a thought Posted by lakes592 (Member # 18905) on :
One doctor at a time is how we will do it. I drop off UOS brochures to doctor offices esp. large practices. Send mailings to ones that are further away. I sprinkle them around hospital lobbies esp. the one I volunteer at. I have given copies to my doctors and asked them to pass them along to collegues. I talk about Lyme every chance I get and always find someone in the room with a story.
There is a girl named Victoria here in NH that is dying from Lyme. I recently forwarded an email prayer request about her story. I don't personally know her. Last week my Fiance was talking about Lyme in one of his classes & it turns out the girl sitting next to him takes care of this girl in the afternoons. I had him give her UOS and pamphlets as I am not sure if she has seen Dr. Jones. It could save her life and I think god brings people into our lives for a reason and that it was no coincidence my Fiance was sitting next to that girl that day.
Posted by bettyg (Member # 6147) on :
BIG IF ... if the new IDSA LYME GUIDELINE PANEL FINDS "CONFLICTS OF INTEREST", ETC. from the recent 8 hr. day idsa/ilads/patient/other people ... MIGHT be just what we need to get this going on the right train track!
fingers, legs, eyes, arms, and boobs crossed that they will find in ILADS FAVOR!! lol
Posted by Tincup (Member # 5829) on :
All you all who are doing so much to educate....
THANK YOU and BLESS YOU!
Keep up the good work.
Posted by Keebler (Member # 12673) on :
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Laura Pursel wrote at the end of the op-ed letter: " . . . I hope that people read this and visit the Lyme Disease Foundation's website to learn more about it. . . ."
There are different groups with similar names. They are not all the same. In fact, patients with complex cases usually do very poorly with information at the ALDF/IDSA site.
It is important to note that the IDSA does not agree with ILADS' recommendations for adequate treatment for lyme, they do not recognize chronic - or even neuro-lyme, and usually does not recognize other tick-borne infections. The IDSA has ignored much solid research from ILADS.
Anyone going to the American Lyme Disease Foundation for help, may come up short.
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