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.

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, 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.”

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.”

Gathering of the Isère sec­tion of the France Lyme asso­cia­tion, on rue Félix Poulat, in Grenoble, on 28^th 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.

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…

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.

© Muriel Beaudoing – pla​ce​gre​net​.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 29^th May, 2016, at 9 am, regar­ding the absence of for­mal stu­dies coun­ting the num­ber of people with Lyme disease in Isère.