Post by LymeEnigma on Apr 14, 2008 15:57:12 GMT -8
The typical example: One falls victim to the IDSA’s poorly written guidelines. Growing desperately sick, finding oneself weary of the cracks s/he was allowed to slip through, as well as the community that helped to create those cracks, one seeks information from a new source: message boards, list serves, and chat groups.
The rationale seems pretty simple: “If I can connect with others who have been through my plight, others with more experience, others who have already done their homework, then perhaps I might find a better way to deal with my illness.” What most people don’t consider is the fact that there is just as much incomplete or downright false information floating around those places as there is anywhere else. Members spout off here-say and speculation as undeniable fact, spreading a dogma of sorts, viciously demonizing all those who feel the need to question them.
These people employ scare tactics to convince the tired and the desperate that long-term antibiotic or alternative “protocol” treatments are all that stand between them and the full and complete regaining of their lives. They offer false hope by telling people that an unquestionable cure for their ailment truly exists, that their “Lyme literate” doctors have a far better understanding of the disease than all other doctors, including those who specialize in infectious diseases, and that all one must do in order to get well is endure high doses of various potent antimicrobial cocktails for a few years.
The fact of the matter, as disheartening as it may be, is this: Recent studies have backed one of the points the IDSA has been saying all along: months upon years of antibiotic therapy is not the answer to treating chronic/post Lyme. While the jury is still out on its potential for persistence in cases of chronically ill patients, recent findings suggest that the bacteria are, indeed, able to survive “appropriate” antibiotic treatment, some going dormant or slipping into non-dividing forms, while others simply hide within various bodily tissues that harbor little to no immune activity, such as collagen and connective tissue. While it is still unclear whether these remaining bacteria are capable of reemerging and causing a full relapse of the disease (and I do believe future studies will prove this without a doubt), what is clear is that several years of antibiotic therapy is really no more beneficial than a few months of those same antibiotics; anything beyond a few months is simply overkill, potentially causing more harm to the patient than good, as, for reasons just described, no further bacteria are being killed. It’s unfortunate, but true: late-stage Lyme disease appears to be a chronic, relapsing illness, and most people who develop this horrific manifestation must simply learn how to live with the bulk of their symptoms, regardless of whether or not they receive “adequate treatment.”
Moreover, even during antibiotic-induced remission, those susceptible may experience persistent autoimmune issues. It is believed that disease-triggered autoimmune responses are caused by what is known as “molecular mimicry.” This is believed to occur with other illnesses, such as measles-triggered MS and salmonella-induced reactive arthritis. Molecular mimicry is believed to occur when certain surface proteins of a pathogen resemble proteins found in the body. As the body attempts to create antibodies against these proteins, in turn it inadvertently creates antibodies programmed to attack the body, itself. While the IDSA contends that this may occur as part of post-Lyme sequelae, denying continued presence of the pathogen as the cause to symptom perpetuation, it is likely safer to assume that the remaining bacteria mentioned above are to blame. Existing in levels too low to cause continued infection, per se, it is apparent that these bacteria may still be capable of causing continued disease, their mere presence, and the specific proteins they express, prompting autoimmune disease.
Unfortunately, when one joins a typical message board for information, for example, it is likely that s/he is not going to receive information that is anywhere close to what I have noted to you. S/he is going to be told that the IDSA is responsible for not only their chronically ill state, but for attempting to withhold additional necessary treatment. While the IDSA’s guidelines are truly responsible, in my opinion, for the delayed and/or unduly conservative treatment of countless individuals, allowing far too many cases to progress to the point of untreatable, their concern over antibiotic abuse is not completely unfounded. Just the same, the message board newbie is indoctrinated into a dogma that will have him/her eventually believing that the IDSA is pure evil, while “Lyme literate” doctors are demi-Gods who are not to be questioned. The person will end up talked into spending hundreds of dollars on unnecessary blood tests through various “specialty labs,” treated with years of ever-changing cocktails of expensive medications (regardless of blood test results), spending even hundreds or thousands more on fly-by-night “protocols,” all the while being taught to question or harass, through careful manipulation and peer-pressure, to ignore and despise all the wrong people.
These people are convinced, for example, that all cases of night sweats are caused by babesia, that all tick-borne infections require long-term treatment (isn’t that convenient, considering how long that might keep the patients coming back, at several hundreds of out-of-pocket dollars a visit?), and that all cases involving chronic fatigue, neurological involvement, and pain are, without any doubt, caused by Lyme disease, despite the fact that countless other “Lyme-like” illnesses also should be considered and ruled out. Some of these people sometimes border on playing doctor, giving unfounded medical advice with the utmost of confidence. They often grow hostile, fashioning the critical mind into a straw man, often creating offensive plays on their perceived adversaries names or handles and taking unfounded shots at the person's integrity or intelligence, should they find their ill-conceived advice or beliefs at all questioned. Beware of such people: if they had a true, valid argument to back their stance, they would be focusing on the issue at hand and offering up peer-reviewed sources, and not wasting their time beating a straw man.
Consumers must be their own advocates, but they must also make completely sure that they are fully informed in the choices they make. Remember that any Yahoo can create a website, that there are countless quacks out there who will tell you anything to make a buck, and that sources should always be peer-reviewed. Beware of circular references (papers in which the author cites his/her own work, or a colleagues non-peer-reviewed material, as an informational source), online “magazines” in which closed groups self-publish material that has not been peer-reviewed outside of their group, and any web site that either relies on testimonials or clearly has a product to sell. In the world of chronic illness, predators abound ... and most of them are pretty damned good at what they do. Buyer beware. Be informed. Believe no one, not even a doctor, at his/her mere word. Information is power ... and it might just save you a few bucks, to boot.
The rationale seems pretty simple: “If I can connect with others who have been through my plight, others with more experience, others who have already done their homework, then perhaps I might find a better way to deal with my illness.” What most people don’t consider is the fact that there is just as much incomplete or downright false information floating around those places as there is anywhere else. Members spout off here-say and speculation as undeniable fact, spreading a dogma of sorts, viciously demonizing all those who feel the need to question them.
These people employ scare tactics to convince the tired and the desperate that long-term antibiotic or alternative “protocol” treatments are all that stand between them and the full and complete regaining of their lives. They offer false hope by telling people that an unquestionable cure for their ailment truly exists, that their “Lyme literate” doctors have a far better understanding of the disease than all other doctors, including those who specialize in infectious diseases, and that all one must do in order to get well is endure high doses of various potent antimicrobial cocktails for a few years.
The fact of the matter, as disheartening as it may be, is this: Recent studies have backed one of the points the IDSA has been saying all along: months upon years of antibiotic therapy is not the answer to treating chronic/post Lyme. While the jury is still out on its potential for persistence in cases of chronically ill patients, recent findings suggest that the bacteria are, indeed, able to survive “appropriate” antibiotic treatment, some going dormant or slipping into non-dividing forms, while others simply hide within various bodily tissues that harbor little to no immune activity, such as collagen and connective tissue. While it is still unclear whether these remaining bacteria are capable of reemerging and causing a full relapse of the disease (and I do believe future studies will prove this without a doubt), what is clear is that several years of antibiotic therapy is really no more beneficial than a few months of those same antibiotics; anything beyond a few months is simply overkill, potentially causing more harm to the patient than good, as, for reasons just described, no further bacteria are being killed. It’s unfortunate, but true: late-stage Lyme disease appears to be a chronic, relapsing illness, and most people who develop this horrific manifestation must simply learn how to live with the bulk of their symptoms, regardless of whether or not they receive “adequate treatment.”
Moreover, even during antibiotic-induced remission, those susceptible may experience persistent autoimmune issues. It is believed that disease-triggered autoimmune responses are caused by what is known as “molecular mimicry.” This is believed to occur with other illnesses, such as measles-triggered MS and salmonella-induced reactive arthritis. Molecular mimicry is believed to occur when certain surface proteins of a pathogen resemble proteins found in the body. As the body attempts to create antibodies against these proteins, in turn it inadvertently creates antibodies programmed to attack the body, itself. While the IDSA contends that this may occur as part of post-Lyme sequelae, denying continued presence of the pathogen as the cause to symptom perpetuation, it is likely safer to assume that the remaining bacteria mentioned above are to blame. Existing in levels too low to cause continued infection, per se, it is apparent that these bacteria may still be capable of causing continued disease, their mere presence, and the specific proteins they express, prompting autoimmune disease.
Unfortunately, when one joins a typical message board for information, for example, it is likely that s/he is not going to receive information that is anywhere close to what I have noted to you. S/he is going to be told that the IDSA is responsible for not only their chronically ill state, but for attempting to withhold additional necessary treatment. While the IDSA’s guidelines are truly responsible, in my opinion, for the delayed and/or unduly conservative treatment of countless individuals, allowing far too many cases to progress to the point of untreatable, their concern over antibiotic abuse is not completely unfounded. Just the same, the message board newbie is indoctrinated into a dogma that will have him/her eventually believing that the IDSA is pure evil, while “Lyme literate” doctors are demi-Gods who are not to be questioned. The person will end up talked into spending hundreds of dollars on unnecessary blood tests through various “specialty labs,” treated with years of ever-changing cocktails of expensive medications (regardless of blood test results), spending even hundreds or thousands more on fly-by-night “protocols,” all the while being taught to question or harass, through careful manipulation and peer-pressure, to ignore and despise all the wrong people.
These people are convinced, for example, that all cases of night sweats are caused by babesia, that all tick-borne infections require long-term treatment (isn’t that convenient, considering how long that might keep the patients coming back, at several hundreds of out-of-pocket dollars a visit?), and that all cases involving chronic fatigue, neurological involvement, and pain are, without any doubt, caused by Lyme disease, despite the fact that countless other “Lyme-like” illnesses also should be considered and ruled out. Some of these people sometimes border on playing doctor, giving unfounded medical advice with the utmost of confidence. They often grow hostile, fashioning the critical mind into a straw man, often creating offensive plays on their perceived adversaries names or handles and taking unfounded shots at the person's integrity or intelligence, should they find their ill-conceived advice or beliefs at all questioned. Beware of such people: if they had a true, valid argument to back their stance, they would be focusing on the issue at hand and offering up peer-reviewed sources, and not wasting their time beating a straw man.
Consumers must be their own advocates, but they must also make completely sure that they are fully informed in the choices they make. Remember that any Yahoo can create a website, that there are countless quacks out there who will tell you anything to make a buck, and that sources should always be peer-reviewed. Beware of circular references (papers in which the author cites his/her own work, or a colleagues non-peer-reviewed material, as an informational source), online “magazines” in which closed groups self-publish material that has not been peer-reviewed outside of their group, and any web site that either relies on testimonials or clearly has a product to sell. In the world of chronic illness, predators abound ... and most of them are pretty damned good at what they do. Buyer beware. Be informed. Believe no one, not even a doctor, at his/her mere word. Information is power ... and it might just save you a few bucks, to boot.