Saturday 16 May 2015

LYME DISEASE -YOU MAY NEVER BE RID OF IT

Lyme disease: fatigue, paralysis, meningitis ... You may never be rid of it
Posted on 12-04-2015 
English Translation by Google to highlight some salient points.
http://leplus.nouvelobs.com/contribution/1352040-maladie-de-lyme-fatigue-paralysie-meningite-on-ne-s-en-debarrasse-jamais.html
Christian Perronne, Head of Infectious Diseases at the University Hospital Raymond Poincare in Garches (Paris-Ouest-France).
Lyme disease is mainly transmitted through tick bites 

1st phase: a red patch around the bite
2nd phase, which can be insidious, the symptoms are multiple yet they often go unnoticed.

'In my consultations, I see sick people every day, some are in absolutely dismal states. Some have a 20-year gap in their lives, some have had to stop working, some have lost their spouse and their work, some even commit suicide.
The disease is not rare: the tests are bad'

'The only thing experts have managed to agree upon is what should be done in the primary phase: at least two weeks of antibiotics should be prescribed. But the problem is that in 80% of cases it is not done, doctors are simply not willing to give antibiotics for a tick bite.'

'In the secondary and tertiary phases, the American and French consensus recommends that patients be treated for three to four weeks. If the illness persists, a second class of antibiotics can be tried, but this will not heal not every patient.
After this period, it is “terra incognita”: everyone does as s/he pleases' 

'Medicine is not capable today of properly treating this disease. The reasoning being : why should money be spent on scientific research for an “imaginary or rare” disease? Nobody is going to care.
A one-year waiting period for my consultations
When the disease has become chronic, because of lack of early diagnosis and treatment, 80% of patients relapse, and as a result, doctors are even more incredulous. Some tell me that they have "never seen any Lyme". My opinion is that they simply have not recognized that one of their patients had Lyme! and they have been treating him/her for something else. I personally have a waiting period of one year for my consultations, it is utter madness ...
It is known that the bacteria keeps waking up from dormancy in cycles. Once you are infected, in many cases, you will never get rid of it. Some patients suffer from moderate forms but others are very ill, and their whole lives can become a living hell. Some patients, for example, can become bedridden after 10 years of illness.
In the US, a vicious and brutal war has been taking place for decades. It has been fueled by a handful of “experts” who refuse to recognize Lyme in its chronic form.'

This was an excellent article go to the link for the full article 
 http://leplus.nouvelobs.com/contribution/1352040-maladie-de-lyme-fatigue-paralysie-meningite-on-ne-s-en-debarrasse-jamais.html 

Lyme and associated tick-borne diseases: global challenges in the context of a public health threat  Christian Perronne

Conclusion and Perspectives

The numerous complexities of Lyme disease make it an extremely difficult illness to fully comprehend. It remains a diagnostic challenge even for the best informed of clinicians. The lack of a gold standard for diagnosis renders the management of patients difficult and seriously hinders our ability to produce accurate statistics, especially as very similar syndromes could be due to other species of Borrelia. In some patients suffering from syndromes of unclear origin, following tick bite, other microbial agents could also be playing a role. Lyme disease has now entered the political debate as shown by the amendment (Section 54.1-2963.2) voted in 2013 by the State of Virginia, USA, that compels physicians to inform their patients that the “current laboratory testing for Lyme disease can be problematic.” The fact that politicians are being called upon to rule on these matters should prompt scientists to regain control of the situation. Politicians should instead become aware of the necessity to fund research and facilitate the setting up of independent international working groups. Reliable testing is essential to investigate the many syndromes of unclear origin that may mimic many other medical disorders. Proper fundamental and clinical research is urgently needed as it would be the most cost effective way of ensuring that patients are accurately diagnosed and that the best therapeutic strategies are decided upon (Stricker and Johnson, 2014). Development of new diagnostic methods is badly needed. New PCR methods and new genomic techniques, such as high throughput sequencing, could prove promising in identifying the complex mix of microbial agents that are probably involved (Vayssier-Taussat et al., 2013Lee et al., 2014). Next generation sequencing allowed the identification of various bacteria from Ixodes ricinus ticks in France:Anaplasma phagocytophilum, Bartonella henselae, B. grahamii, Borrelia afzelii, B. garinii, B. burgdorferi, B. miyamotoi, Candidatus Neoerlichia mikurensis, Ehrlichia canis, Rickettsia canadensis, R. felis, and R. helvetica (Vayssier-Taussat et al., 2013). These new techniques should be applied to human samples. Other variables, such as genetic, environmental, or auto-immune factors should also be studied. The name “Lyme disease” is too restrictive as it focuses and fuels the controversy. A new term should be agreed upon for these syndromes with possible infectious involvement, often following tick bites. Closer collaboration between epidemiologists, microbiologists, immunologists, geneticians, environmental scientists, veterinarians, entomologists, and clinicians is needed to identify the main agents that could be causing these occult infections and to determine strain pathogenicity. A new multidirectional approach is crucial in order to widen the field of research and to move forward.


4 comments:

  1. Hello Joanne, Since we're only now in mid-May of 2015, I wonder if the above referenced article was actually posted in December of "2014?" Opps!

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  2. Actually it was April 2015 perhaps the way of writing the date in Europe ie day followed by month rather than month followed by day had you confused. No matter I posted it because it is an important view from a Prof I have the utmost respect for for trying to raise awareness of the devastation this disease is causing in plain sight, but those who should help us choose to ignore the science that shows old opinions wrong.
    I also post information on this blog for future reference for myself so I can easily find and share information on Lyme forums. This was a case in point, especially so, so that I could share for a specific purpose.
    It is nice of you to comment I do enjoy a conversation in the comments. Mostly the only ones I get are trying to sell things or other spam - those I delete. I have had nearly 500 hits yesterday and regularly get 300 to 400 daily so it is nice to know others find it sufficiently interesting to read. I deliberately choose not to earn anything from this blog but clearly could, my reason is I do not want to profit from the misfortunes of others struggling to learn about this disease.
    Best wishes Joanne
    ps I had to delete above as I made the mistake of saying 2014 it is 2015 Lol!

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  3. Interview Prof. Christian Perronne, Head of Infectious Diseases at the University Hospital Raymond Poincare in Garches (Hauts-de-Seine). How do you get Lyme disease? The main vector is the tick, even if 70% of patients have no recollection of having been bitten. It carries the bacterium Borrelia. Right now, with sunny days, the risks are greater because we are all in contact with nature, especially near forests. The bacteria can also be transmitted through maternal-fetal way. This disease, curable, can be very debilitating with symptoms such as fatigue, memory problems or joint pains. Sometimes the damage is irreversible. What if I bite? It is important not to brutally snatch the tick but using a "tick-pulls", found in pharmacies. Then you have to disinfect and monitor bites points. The problem is that this disease is invisible and there is no effective test today in France. So, periodically, cases of contamination are not detected. You point the finger at French delay in treatment of this disease. Why? The situation is catastrophic. There is no research effort. So doctors are afraid of losing their right to exercise if they try a treatment that comes with official recommendations. This is persecution and a tragedy for those who suffer Lyme. Authorities do not understand it.

    Personally, I prefer to go to prison than let people die like that. And I can not meet the dozens of requests I receive every day.

    In Germany, there is no fear of prosecution. Patients are turning to overseas? This is often the case, actually. After seeing twenty doctors slam the door in their face, they have no choice but to look elsewhere. But the United States, for example, the cost is very high and not reimbursed. You have to react quickly, Lyme disease is a public health problem. For this I would like sick, doctors and researchers are working together. Bastien BOCQUEL. Thursday, May 12, at 20 h 30, Christian Perronne conference at the hotel department. Complete. Thursday 19 May at 14 h 30, the section of Orne France Lyme organize another conference in the House of associations of Alençon (25, rue Demées). Information 02 33 27 20 50.

    http://www.ouest-france.fr/normandie/orne-61000/la-maladie-de-lyme-est-un-probleme-de-sante-publique-4222867

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