Lyme disease, more and more widespread, but still underestimated

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DECRYPTION – Hiking, walking, picnicking in the woods… The weather is still good and you want to enjoy it. But watch out ! There could be something dangerous, with serious consequences, lurking nearby : ticks. Their painless sting is responsible for the transmission of Lyme disease. Little known, this pathology can be debilitating if it’s not carefully treated.

 

 

 

Illustration d'une tique. By Felix Fellhauer. - Own work (Original text: Eigene Aufnahme)., CC BY-SA 3.0 de, https://commons.wikimedia.org/w/index.php?curid=20173922

A tick, full of blood. © Félix Fellhauer

“Officially, it is a rare disease for which public awa­re­ness hasn’t been rai­sed yet. Not many people are inter­es­ted in it ”, laments Cécile Musy, The Isère Unit Director of the France Lyme asso­cia­tion.

After the release of Chantal Perrin’s book, The case of Lyme disease, people were bet­ter infor­med about the disease.

 

 

 

“ It’s an invisible and long lasting disease ”

 

 

“My daugh­ter’s case is like many other cases in France, where doc­tors are still una­ware of the disease”, said Anne-Lise, a mem­ber of the France Lyme asso­cia­tion, and the mother of a tee­na­ger affec­ted by the disease. Lyme disease is pas­sed on by the sting of a tick infec­ted with the Borrelia bac­te­ria

 

Cécile Musy, responsable de la section Isère de l'association France Lyme

Cécile Musy, the Isère Unit Director of the France Lyme asso­cia­tion. DR

Over 30% of these para­sites carry this bac­te­rium. “The tick feeds on blood for days injec­ting an anaes­the­tic, as well as the bac­te­ria res­pon­sible for the conta­mi­na­tion. If not detec­ted in time it could have a major effect on health.”, explains Cécile Musy.

 

Borrelia is the most well-known bac­te­ria, but not the only one. The aca­rid can contain other patho­ge­nic agents : lethal viruses, ence­pha­li­tis and other para­sites, among which, some are still unk­nown, like some co-infec­tions which are not stu­died, like Lyme disease. Contamination is often cha­rac­te­ri­zed by a flu-like state during the first ten days, and in 50% of cases, by red patches loca­ted around the sting, bet­ween three days and six weeks after it occurs.

 

If not qui­ckly taken care of, the disease pro­pa­gates around the body and can affect the lym­pha­tic sys­tem, muscles, nerve tis­sue and the brain. The symp­toms can then become serious and pain­ful : arthri­tis, mus­cu­lar and arti­cu­lar pain, gene­ral fatigue, even neu­ro­lo­gi­cal and psy­chia­tric pro­blems, in the most advan­ced cases. “It’s a long term invi­sible disease. It’s an infec­tion, with no fever, which takes time to reveal itself and can become chro­nic”, warns the Isère Unit Director of the asso­cia­tion.

 

 

 

No official study on the number of cases in Isère

 

 

Even though 30,000 people affec­ted by the disease are recor­ded every year, the asso­cia­tions figh­ting against the disease esti­mate the num­ber of cases to be 600,000 in France. “The diag­noses are often badly esta­bli­shed and the blood tests raise ques­tions, said the Isère Unit Director of the France Lyme asso­cia­tion. Furthermore, the for­mer sick, whom we consi­der cured, are not recor­ded.

 

Rougeurs qui apparaissent après une piqûre de tique infectée, donnant lieu à la maladie de Lyme

Red patches appea­ring after the sting of an infec­ted tick. DR

Every year, the num­ber of detec­ted cases increases… For Cécile Musy, the expla­na­tion lies, above all, in the growth of com­mu­ni­ca­tion bet­ween the asso­cia­tions and increa­sing awa­re­ness on the part of doc­tors, that push those invol­ved to act, inclu­ding those who unk­no­win­gly carry the disease.

 

There are many offi­cially reco­gni­zed cases of patients with Lyme disease in Isère. But, there has been no research giving a true num­ber, though some stu­dies show that imple­men­ta­tion in the Rhône-Alpes is not negli­gible.” And in seve­ral cities, like Bonneville in Haute-Savoie, a high num­ber of people are affec­ted : out of 100,000 inha­bi­tants, 500 are car­riers of the Borrelia bac­te­ria. (Cire Rhône-Alpes 2006 – 2007)

 

 

 

“ Many doctors do not know the disease ”

 

 

Underestimated, the disease remains dif­fi­cult to diag­nose, not to men­tion that research on the sub­ject is still very inade­quate. “It remains a rare, unin­te­res­ting disease ”, said Cécile Musy. Anne-Lise com­ple­ted by saying : “It was very hard to hear her daugh­ter say : “It would be easier and less pain­ful to cut off my legs.” She was seen by more than twenty doc­tors and spe­cia­lists, was diag­no­sed with every pos­sible men­tal or phy­si­cal disease, and was finally diag­no­sed, eight years later, in Germany.”

 

Rassemblement de la section Isère de l'association France Lyme, rue Félix Poulat à Grenoble, le 28 mai 2016, à l'occasion de la journée nationale contre la maladie de Lyme. © DR

Gathering of the Isère sec­tion of the France Lyme asso­cia­tion, on rue Félix Poulat, in Grenoble, on 28th May, 2016, on the natio­nal day against Lyme disease. © DR

 

In spite of the increase of the num­ber of detec­ted cases and the incur­red real risks, the offi­cial scien­ti­fic recom­men­da­tions deny the gra­vity of the situa­tion, accor­ding to the asso­cia­tions. The sick resent the absence of epi­de­mio­lo­gi­cal study in the depart­ment of Isère, but not only that. “Without sup­port and with limi­ted resources, it is very hard to carry-out”, confides Anne-Lise.

 

As regards the treat­ment, all the doc­tors agree on one thing : the ear­lier the disease is taken care of, the more effec­tive the treat­ment. But, two camps argue concer­ning the dura­tion of the treat­ment. A benign ill­ness requi­ring a quick treat­ment ? Or an infec­tion requi­ring months of anti­bio­tics ? This constant debate annoys the patients. “Many doc­tors do not know the disease, or think that the patient is cured in three weeks”, explains Cécile Musy.

 

 

 

“ It’s as if we have HIV ”

 

 

The sick and the asso­cia­tions denounce the lack of research into Lyme disease and the lack of com­pe­tence within the medi­cal pro­fes­sion in this domain. At present, the doc­tors have to fol­low a strict pro­to­col and pres­cribe res­tric­ted doses of anti­bio­tics. “Some doc­tors are pur­sued and for­bid­den to per­form their func­tion if pres­cri­bing anti­bio­tics for too long”, regrets Cécile Musy.

 

Cercles concentriques, symptômes de la maladie de Lyme. DR

Concentric circles due to Lyme disease. DR

Among the rare prac­ti­tio­ners to know this disease, Dr Philippe Bottero, who prac­tices at Nyons in the Drôme, was him­self for­bid­den to per­form his func­tions during six months, among which, two with reprieve, because of a long-term pres­crip­tion for anti­bio­tics. “In the long run, Lyme disease can lead to Alzheimer’s disease or psy­cho­lo­gi­cal troubles such as bipo­lar disor­der and schi­zo­phre­nia, he explains. Although the ini­tial source is infec­tious and requires treat­ment with an anti­bio­tic, this need is not reco­gni­zed.”

 

Thus, few prac­ti­tio­ners ven­ture to pres­cribe anti­bio­tics beyond the sta­tu­tory dead­line of 21 days, at the risk of finan­cial and penal penal­ties. The asso­cia­tions* – The first dating back to 2008 – have not suc­cee­ded in being heard by the health agen­cies or the minis­ters concer­ned.

 

“It’s as if we have HIV, explains Anne-Lise. Our immune sys­tem reacts the same way, and eve­ry­day life is the same, in regards to incom­pre­hen­sion and denial. It is also bin­ding and pain­ful, but you do not die from it.” Information and rai­sing awa­re­ness are thus, at present, their only wea­pons to fight Lyme disease.

 

 

Cassandre Jalliffier

 

Traduction from Speak English Center

Phone : +33 4 76 50 39 79

1 ave­nue du Vercors, 38600 Fontaine FRANCE

 

 

A CONTAGIOUS DISEASE…

 

perturbateurs endocriniens pendant la grossesse et facteur d'obésité.

DR

Research led in Germany into Lyme disease sho­wed that it could be sexually trans­mit­ted, and quasi-inevi­ta­bly from mother to unborn child, in the case of pre­gnancy. Yet it is a hea­dache to detect the disease … The scree­ning test for Lyme has a relia­bi­lity rate of only 30 %. Other tests exist, they are only pres­cri­bed in dribs and drabs, accor­ding to very spe­ci­fic cri­te­ria, and some­times incon­clu­sive.

 

In France, some resear­chers, like Luc Montagnier, still dedi­cate them­selves to these ques­tions. Having been known as the pre­cur­sory resear­cher of HIV, this doc­tor has made Lyme disease his new hob­by­horse.

 

 

Randonnée Gourmande à la Bastille © Muriel Beaudoing - placegrenet.fr

© Muriel Beaudoing – placegrenet.fr

THE GOOD GESTURES TO ADOPT

 

Ticks are mainly situa­ted in forests and in grass. To limit the risks during outings, make sure to cover your­self enti­rely, with trou­sers cove­ring shoes, a long-slee­ved top, as well as a hat with visor, and use a repellent.

 

On the way back, check that there are no ticks on your skin. These insects find accom­mo­da­tion mainly in the folds of the knee, the groin, under arm­pits or on the scalp, but also in the navel. To get rid of them, it is best to use a tic remo­ver, so as not to leave the ros­trum of the insect, and to disin­fect the wound.

 

In case of flu-like symp­toms or ery­thema around the sting in the days or weeks which fol­low, contact your doc­tor imme­dia­tely.

 

 

 

* Created a few months ago, the French Federation of tick-borne diseases brings toge­ther seve­ral asso­cia­tions, patients and experts, inclu­ding Christian Perronne, in par­ti­cu­lar to opti­mize fund-rai­sing.

 

N.B. : The article was modi­fied Sunday 29th May, 2016, at 9 am, regar­ding the absence of for­mal stu­dies coun­ting the num­ber of people with Lyme disease in Isère.

 

 

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