Post by LymeEnigma on Oct 12, 2009 20:11:08 GMT -8
October, 2009
Much time has passed since my last update. The main reason for this is the simple fact that I had made a firm choice not to let Lyme and its associated issues define me any longer; I set out to live my life despite my continued symptoms, whatever their cause. I realized, after too many years of watching the same people on the same message boards continue with the same ridiculous mantras, that my attempts at importing reason into the mix were futile. These same people are still sick, despite their years of heavy antibiotic use, hypobaric oxygen chamber sittings, alternative “protocols,” etcetera; despite my relatively limited treatment, it seems to me that my quality of life is far superior when compared to that of the die-hard antibiotic addicts, even if I am still very clearly disabled.
So why add another update now?
Today I received an e-mail from the chronic Lyme zealots, one I could not simply ignore, as I typically do these days. Like many of their typical mass mailers, the e-mail detailed the evils of the IDSA, and how this particular group of doctors is working hard to ensure that—for some unknown reason—those of us permanently afflicted with symptoms post-treatment must continue to suffer. This “call to action” caught my attention, however, not because of the typical BS included, but because of its even more-than-usual vagueness and off-the-wall accusations. This time, I could not just sit silent.
You see, ambiguity is their forte; it’s how they baffle (in my humble opinion) so many people with their BS.
This particular steaming pile consists of the assertion, depending upon which part of the e-mail one reads, that the state of New Jersey is attempting to classify Lyme disease (not even “chronic” Lyme, this time, strangely enough) as either an autoimmune disease OR a disease of unknown cause, and will thus fall among the ranks of other enigmatic illnesses such as chronic fatigue, fibromyalgia, Gulf War Illness, and multiple chemical sensitivity. Confused yet? Yeah, me too. Baffle them with….
Everyone knows that Lyme disease is caused by a spirochete; in the US it is usually caused by Borrelia Burgdorferi. To claim that ANYONE would be disputing this is simply ludicrous. However, numerous fringe Lyme groups are attempting to claim just that—with, it seems to me, the sole intention of scaring patients into jumping onto their newest bandwagon. “The evil IDSA is, once again, trying to take away your precious antibiotics; act now, or you’ll suffer for the rest of your sick, miserable life….”
Enough. Look at the research. Look at REAL, peer-reviewed, journal-published research, and you’ll see that for years doctors from all across the globe have addressed the many questions, issues, and contradictions that have, and continue to, surround the ever-growing Lyme controversy. They have also offered good evidence that Lyme disease can trigger autoimmune diseases in those predisposed. I’ll give you a few articles to get you started:
jcm.asm.org/cgi/reprint/43/2/850.pdf
www.ncbi.nlm.nih.gov/pubmed/19346313
www.ncbi.nlm.nih.gov/pubmed/18570749
You see, there are apparently certain proteins included in Bb’s make-up that hold uncanny similarity to proteins found in the human body. When the body sets off an immune response against Bb, it cannot simply tell the antibodies to attack only the proteins in question attached to the bacteria. The “self” becomes an equal target, and an autoimmune cascade begins. In some patients—like me, for example—the end result is autoimmune disease.
I just recently tested positive for lupus. My ANA was positive, as well as my anti-double-strand DNA test. Combined with my malar rash that comes and goes, my joint inflammation, and other lupus-consistent symptoms, I received a definitive diagnosis. Do I think there is no possibility that I still have BB spirochetes hiding in my body? Absolutely not. The fact of the matter is I don’t know. All up-to-date, non-biased research indicates that Bb can persist in the body, even after months or years of treatment. Research also indicates that further antibiotic treatment will not change a patient’s prognosis. Please don’t hate me for stating this undeniable truth; I wish a few more years of antibiotics would save you from your suffering, but the evidence truly is against it.
So, where do we go from here? More Lyme rallies? More politics being imposed into the very different realm of science? More “calls to action” against a nameless evil made up by an even greater evil (again, humble opinion, here), intent on convincing you that they have all the answers and all nay-sayers simply want you, for some crazy reason, to remain ill? More scare tactics, threats, and pseudo-science? I say no. I say it is time to start asking MORE questions. It is time to stand up against the bandwagons and nay-sayers alike. I say it is time to find some real answers—and those answers lie in further research—research into antibiotic persistence, research into bacteria-induced autoimmune disease, and research into REAL ling-term options.
I am not the enemy. I am ill, just like you, because my GP failed to diagnose me in a timely manner. However, I am no sicker than the masses who have received years of antibiotic therapy. If anything, I am healthier. I have not destroyed my immune system with years upon years of fruitless antibiotic therapy. I have, however, begun to treat my lupus with low-dose Plaquenil. Do I think this is the end?
No; this is only the beginning.
Much time has passed since my last update. The main reason for this is the simple fact that I had made a firm choice not to let Lyme and its associated issues define me any longer; I set out to live my life despite my continued symptoms, whatever their cause. I realized, after too many years of watching the same people on the same message boards continue with the same ridiculous mantras, that my attempts at importing reason into the mix were futile. These same people are still sick, despite their years of heavy antibiotic use, hypobaric oxygen chamber sittings, alternative “protocols,” etcetera; despite my relatively limited treatment, it seems to me that my quality of life is far superior when compared to that of the die-hard antibiotic addicts, even if I am still very clearly disabled.
So why add another update now?
Today I received an e-mail from the chronic Lyme zealots, one I could not simply ignore, as I typically do these days. Like many of their typical mass mailers, the e-mail detailed the evils of the IDSA, and how this particular group of doctors is working hard to ensure that—for some unknown reason—those of us permanently afflicted with symptoms post-treatment must continue to suffer. This “call to action” caught my attention, however, not because of the typical BS included, but because of its even more-than-usual vagueness and off-the-wall accusations. This time, I could not just sit silent.
You see, ambiguity is their forte; it’s how they baffle (in my humble opinion) so many people with their BS.
This particular steaming pile consists of the assertion, depending upon which part of the e-mail one reads, that the state of New Jersey is attempting to classify Lyme disease (not even “chronic” Lyme, this time, strangely enough) as either an autoimmune disease OR a disease of unknown cause, and will thus fall among the ranks of other enigmatic illnesses such as chronic fatigue, fibromyalgia, Gulf War Illness, and multiple chemical sensitivity. Confused yet? Yeah, me too. Baffle them with….
Everyone knows that Lyme disease is caused by a spirochete; in the US it is usually caused by Borrelia Burgdorferi. To claim that ANYONE would be disputing this is simply ludicrous. However, numerous fringe Lyme groups are attempting to claim just that—with, it seems to me, the sole intention of scaring patients into jumping onto their newest bandwagon. “The evil IDSA is, once again, trying to take away your precious antibiotics; act now, or you’ll suffer for the rest of your sick, miserable life….”
Enough. Look at the research. Look at REAL, peer-reviewed, journal-published research, and you’ll see that for years doctors from all across the globe have addressed the many questions, issues, and contradictions that have, and continue to, surround the ever-growing Lyme controversy. They have also offered good evidence that Lyme disease can trigger autoimmune diseases in those predisposed. I’ll give you a few articles to get you started:
jcm.asm.org/cgi/reprint/43/2/850.pdf
www.ncbi.nlm.nih.gov/pubmed/19346313
www.ncbi.nlm.nih.gov/pubmed/18570749
You see, there are apparently certain proteins included in Bb’s make-up that hold uncanny similarity to proteins found in the human body. When the body sets off an immune response against Bb, it cannot simply tell the antibodies to attack only the proteins in question attached to the bacteria. The “self” becomes an equal target, and an autoimmune cascade begins. In some patients—like me, for example—the end result is autoimmune disease.
I just recently tested positive for lupus. My ANA was positive, as well as my anti-double-strand DNA test. Combined with my malar rash that comes and goes, my joint inflammation, and other lupus-consistent symptoms, I received a definitive diagnosis. Do I think there is no possibility that I still have BB spirochetes hiding in my body? Absolutely not. The fact of the matter is I don’t know. All up-to-date, non-biased research indicates that Bb can persist in the body, even after months or years of treatment. Research also indicates that further antibiotic treatment will not change a patient’s prognosis. Please don’t hate me for stating this undeniable truth; I wish a few more years of antibiotics would save you from your suffering, but the evidence truly is against it.
So, where do we go from here? More Lyme rallies? More politics being imposed into the very different realm of science? More “calls to action” against a nameless evil made up by an even greater evil (again, humble opinion, here), intent on convincing you that they have all the answers and all nay-sayers simply want you, for some crazy reason, to remain ill? More scare tactics, threats, and pseudo-science? I say no. I say it is time to start asking MORE questions. It is time to stand up against the bandwagons and nay-sayers alike. I say it is time to find some real answers—and those answers lie in further research—research into antibiotic persistence, research into bacteria-induced autoimmune disease, and research into REAL ling-term options.
I am not the enemy. I am ill, just like you, because my GP failed to diagnose me in a timely manner. However, I am no sicker than the masses who have received years of antibiotic therapy. If anything, I am healthier. I have not destroyed my immune system with years upon years of fruitless antibiotic therapy. I have, however, begun to treat my lupus with low-dose Plaquenil. Do I think this is the end?
No; this is only the beginning.