By Isabelle Vachias. March 12, 2018
translated from French and posted by Jenna Luche-Thayer
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A specialist in Lyme disease, the infectious disease doctor Christian Perronne contributed to the development of the care protocol, which should be made public in April. He will be in Aurillac, Thursday, March 15, for a new conference.
The national protocol for diagnosis and care promised in the Lyme plan, launched in September 2016 by Marisol Touraine, then Minister of Health, will be unveiled in the coming weeks. For the patients as for the doctors, it will be “a great advance”, promises the professor Christian Perronne, specialist of the Lyme disease and member of the working group in charge of elaborating the new recommendations.
The new care protocol was originally announced for July 2017… Why was there such a delay?
It took time to reach consensus on the recommendations. The last meeting of the working group was held on March 8th. Our conclusions must still be validated by the College of the High Health Authority, then by the Ministry of Health. The protocol should be published before the end of April. Then we will have to work with infectious disease specialists to determine all the recommendations.
How will this protocol change the lives of the sick?
I am convinced that it will improve their care. Moreover, it was the goal of the public authorities, doctors and learned societies at the launch of the Lyme plan: we can move forward together, stop saying: “What the other is doing is whatever!” and above all, we realize that there are patients in great suffering. New scientific data will arrive.
If the doctors see that they can move forward in a certain way, that they can go out of hiding, that they will not have a problem with their colleagues, with the Council of the Order of Doctors, or with the health insurance, they will move. This new protocol is a big step forward. It is far from perfect, there may be criticism on this or that point, but a dynamic process is launched. It will be re-evaluated every two years.
Will the protocol define the ideal treatment?
No, because today we are unable to say: “The best treatment is this one”. For example, there will be no maximum for the duration of an antibiotic treatment.It will be left to the discretion of the doctor.You cannot set a maximum for the simple reason that there has been no research on Lyme for thirty years.
We have no data, all the studies that have been done have been limited to three months. Now, we will be able to monitor patients, record practices, see what works best … It was the goal of the working group, frame what is being done to try to evolve. Our approach is pragmatic, it leaves the door open … And it suits me well.
A framework – what does that mean?
Exactly, we do not know. And that worries me. Saving information and feeding databases takes time. Only in infectious disease services, we do not just Lyme! So, it will take manpower. For pure research also, for example if one wants to evaluate a strategy over a specific period, it will require funding. Without important means, it will never be done well. Of course, it will be expensive at first. But afterwards, the state will save money, because these patients will be better managed.
It is expensive, a patient wandering for fifteen or twenty years. There are work stoppages, repeated hospitalizations, hundreds of scans, MRIs, biological tests, tons of antidepressants, physiotherapists … All that accumulates, it ends up making astronomical sums. With recognition of the disease, health economics researchers will be able to make assessments. So far, there have not been since these patients do not exist!
Your previous conference in Aurillac is June 29, 2017. Will you be the same on March 15 at the convention center?
It will be a little different. Since June, there have been new scientific references proving the existence of chronic Lyme disease, so I will insist on that. There are also known publications, which I did not highlight enough last year, and which show the persistence of clinical signs in many patients after the official three weeks of antibiotics. There are at least fifteen publications that find Borrelia bacteria in men who have received short-term treatment. All data overlap, so cannot say that chronic Lyme does not exist.
Professor Christian Perronne will host a conference on Lyme disease Thursday, March 15, at 20 hours, in the atrium of the departmental council in Aurillac. Free admission.
Healing rarely at 100%
On January 31, 2017, the Public Health Unit of the Paris Public Prosecutor’s Office received a complaint against X for aggravated deception. The complainant is an Aurillacoise revolted by the ineffectiveness of screening tests for Lyme disease. Handicapped by extreme fatigue, this Cantalienne had met Professor Christian Perronne after a long wandering diagnosis. For ten months, she received an ‘anti-protocol’ antibiotic treatment, prescribed by the infectious disease doctor.
Today, she is better and gradually resumes her professional activity. “I’m like before,” she says. As before, or almost: lack of concentration, it is still impossible for her to drive long.
The proceedings initiated on January 31 by a Cantalienne suffering from Lyme disease is still ongoing.
“It is common not to see a 100% permanent cure,” notes Professor Perronne. “We see people who always keep a little tired, we see others who resume a normal life, but who have seizures, more or less long, more or less regular. They are tired, they have disorders of the memory … “It shows that the Borrelia is still there, even if it is under control”.
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**Comment**
Time will tell if the French will be successful with their new plan, but you have to admit that putting medical decisions in the hands of doctors an important improvement from where we are now.
Madison Area Lyme Support Group 