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Before you register for membership of http://LymeRICK.net ...
Please note that LymeRICK is NOT meant to act as a PATIENT SUPPORT group!
There are plenty of other Internet groups that provide support to Lyme borreliosis patients in different countries/states.
LymeRICK is meant to be a SPECIALIST / PROFESSIONAL WORKING GROUP PROVIDING SCIENTIFIC INFORMATION.
Anybody who will join LymeRICK must provide the webmaster / owner with personal data and contact information, as well as a description of what (s)he can offer the group of expertise, as well as CV for evaluation of particular skills / level of experience offered in this special area of Medicine.
If the webmaster do not receive this personal information from you before or within a few days after registering for membership at the LymeRICK website, the Webmaster will have to decline membership, no matter if your email address is known by the Webmaster or not, because same rules must apply for all group members!
Doctors as well as patients can use the LymeRICK website to educate themselves and to retrieve valuable information on articles, mainly works published in peer-review scientific journals and/or which have been presented at scientific conferences.
LymeRICK LINKS often points to electronic papers (PDF) that are supplied for free download from publishers website. PDF articles are exactly like the printed version in the paper journal, and can be printed out and handed to the busy doctor, that perhaps doesn't have much time to search for such information self. This way the patient can help a busy doctor to gain knowledge on these relatively "new" infections, that were not teaching book stuff way back when the doctor was studying Medicine in his/her younger days.
Borrelia burgdorferi was first described in 1982 i.e. 25 years ago and since that time, over 10000 articles has been published on this topic - try a PubMed search for "Borreli* OR Lyme" and there are further many valuable works that have been published in journals not yet referenced on PubMed; there are many interesting OLDER articles on the clinical description of what we now know must have been Borreliosis! - furthermore, in the last 10-15 years several other "new" tickborne infections have been found to be associated with animal and/or human post-tickbite disease: Anaplasma (HGA, former HGE), Babesia, Bartonella, Coxiella (Q-fever), Ehrlichia, Rickettsia and more ... with implications for immune function, hormonal function and more ...
While findings those bugs in sick humans is considered "new" and "rare", they might actually have been present in humans before and more than we know about; the correct diagnosis was not found because these infections were not thought of as a possible human infection, thus was not being tested for, or no test is/were available for it at the time; many of these animal infections has long been known by veterinarians to have potential for becoming chronic / persistent infections - this is / could therefore be a possibility in humans too - we won't know for sure, unless we investigate thoroughly and follow-up long term on the sick and try to get a certain i.e. antigen test verified diagnosis ....
Veterinarians are VERY WELLCOME in the LymeRICK group, because I think they can probably provide much more information / literature on animal infections, that human doctors may not have ever heard about before; many families house pets that may bring ticks/infections at home; some patients report that they got their Borrelia infection via a tick brought home by the cat or dog; some report that more family members and house pets are ill with similar symptoms and in such cases it would be very interesting to examine the whole household - both humans and pets - for all these infections!
It is a must for any doctor dealing with these vector borne infections, to note in the patients papers details about family diseases, possible environmental exposure to ticks and other bloodsuckers, pets, farm animals etc. and if these display similar symptoms!
Like spirochaete "cousin" syphilis, Borrelia can have latency periods, alternating with recurrent worsenings (relapses, flares). While animals can't tell us in words how they are on bad days, and their disease may not become apparent to owner/vet. before VERY SEVERE, many milder cases are probably usually going undetected - humans, on the other hand can describe their (milder disease?) symptoms and the course can be followed systematically long-term via for example the Excel symptom diary .... this disease expression may differ, BUT until proven otherwise for certain, we must assume that human infection could be very much like animal infection with the same pathogenic microbe!
Pathogen families may show many similarities in disease expression; there are many strains of Borrelia causing a "Lyme disease-like illness"; to date 6 Borrelia burgdorferi SENSU LATO strains have been detected in HUMAN infections here in EUROPE; further strains has been associated with human disease in other parts of the World - we may travel fast from one end of the end of the World to another in 24 hours, thus infections may become spread rapidly, if a life-cycle become established in a new suitable temperate area with suitable susceptible hosts available!
The names of the 6 EU-strains are: Borrelia burgdorferi sensu strictu, Borrelia afzelii, Borrelia garinii, Borrelia lusitaniae, Borrelia valaisiana, Borrelia spielmanii.
It is important to notice that the latter 3 patients were seronegative, despite two had displayed symptoms compatible with Lyme disease for 10 years before culture/PCR diagnosis; i.e. the Borrelia infections could not have been detected by the conventional antibody tests that is optimized for finding the three former and first known Borrelia strains implicated in human Borreliosis!
This lead to a key question: how many patients suspect of clinical borreliosis are really being sick from "new" Borrelia variants, that go undetected by the conventional serology tests?
We won't find the truth unless we INVESTIGATE, and for doing that we need MONEY & ACCESS to ANTIGEN TEST METHODS that detects the microbes instead of the hosts immune reaction towards the microbes that may fail ... only then we can find out how many of the PROVEN BORRELIA INFECTED the commonly used Borrelia serology test may fail to detect?
There are hundreds of borrelia strains in nature/ticks not yet detected in animals / humans ... but how do they maintain a life-cycle in nature if NOT infecting mammals alternating with a tick/louse?
During mammal infection Borrelia can adjust to and do many different tricks to avoid its hosts fierce immune reaction, for instance by antigen variation - when taking away osp or flagella from surface - as a reaction to host immune reaction towards those antigens? - the microbe has two advantages: formed antibodies become a worthless weapon and that particular immune stimulatory effect ceases, when the antigen is removed from the microbes surface ... a flagella-less variant of Borrelia lost motility and ability to cross vascular lining (endothel), but some of these variants later reverted back to the wild type bearing flagella and motility .... the implications are obvious, could explain why patients serologic response towards Borrelia may drop despite the patient is continually infected and Borrelia antigen can be detected in the seronegative host!
Borrelia family contain numerous different strains (over 100?). There are both tickborne and louse borne variants of both Borrelia as well as Rickettsia strains, that may not differ that much in clinical disease presentation from variants carried by the other vector; disease expression may be more depending on the individuals hosts immune function, than on which particular strain of Borrelia or Rickettsia the patient was infected with; some hosts may be more susceptible than others, some may have genetic markers that "mimics" those of microbes so antibodies may cross react and may develop into autoimmune disease that may continue to trigger continued reaction also after the microbe has been eradicated - IF THEY HAVE ALL BEEN ERADICATED?
... there is so much we don't know YET, that we will have to keep searching for the TRUTH and do research, cross-country borders in an open-minded SCIENTIFIC and HONEST way.
By combining forces and continue to add knowledge, we might learn new things that might help us understand these diseases better and may find a way to help patients to recover, by being able to chose best possible treatment ...
This has become a huge and very complex area to cover; thus there is still a lot of work to do in LymeRICK, continuing to find and present valuable information on all these infections and related - on LymeRICK website!
"It is possible to eat an elephant, if you take small bites" said the inventor of the TimeManager(R).
I add, the more we are to take bites, the quicker the elephant will be consumed. More "Man"-power is needed in LymeRICK. If you have a suitable scientific education, special interest in tickborne infections and related, much knowledge about the subject already and has time and will to search, read and write reviews / reference lists for LymeRICK - please send info about yourself to the Webmaster of LymeRICK :)
IMO articles are best stored in public Internet areas outside this website in HTML, because then the links will be kept in human readable and memorable form; old links will continue to work because files referenced by other ressources long time ago are NOT MOVED AGAIN - just updated as time goes by!
LymeRICK LINKs will point you to both HTML articles saved on the LymeRICK webserver and elsewhere on Internet.
Some links to external sites may not work always; the external site may have changed or server is down - please report broken links ASAP, so information can be kept as updated as possible!
Please try to use the LymeRICK LINKS and SEARCH function to find the information you need. In case you miss information on the particular topic that you were looking for, you are very well-come to write the webmaster (form provided on the website) and ask your question(s)!
Perhaps LymeRICK group will be able to do literature search and come up with valuable information on that particular topic in due time?
- in that case you have helped improve the level of information on LymeRICK.
Many reference lists are old and may be out-of-date and will need to be updated. You can help by providing useful additive information to the webmaster!
If you find any scientific articles that you think should be referenced in LymeRICK links, you may suggest it via [Submit link] (guests included). When you suggest references you must remember to include source, title and author(s) of the publication, plus a summary / abstract / your personal comment to the paper if possible. You can also suggest News via [Submit News].
News are listed on the front page!
ANY HELP YOU CAN PROVIDE will be highly appreciated, because this site is always ready for making improvements :)
Marie Kroun, MD
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