With the looming deadline of Saturday, August 10 (UPDATE: Now extended to Monday, September 9th!) as the last day to submit comments to the Infectious Disease Society of America (IDSA), American Academy of Neurology (AAN), and the American College of Rheumatology (ACR) on the 2019 Draft Guidelines for the Prevention, Diagnosis, and Treatment of Lyme Disease, I thought I'd post six of my comments. Perhaps my obviously conspiracy-minded opinion will spur you on to submit your own observations and insights.
Feel free to comment on my blog too, but please be polite. Judge not until you've walked a mile in my shoes. That's saying something, since I cannot everyday walk a full mile as I juggle my on-going symptoms of Lyme, Bartonella, Babesia, and the lingering effects of the Powassan Virus.
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ONE) First, I will agree with the Research Needs evaluation of Chronic Lyme: That further studies need to be done. But in reference to line 1495 (and 1496) I wish that more of an effort would be made to understand that many of us in the Lyme literate world recognize Chronic Lyme as being a case of Lyme that has gone misdiagnosed and/or undiagnosed, often for years, and that the language in these lines "...prolonged antimicrobial therapy is not helpful" actually hurts a huge number of patients who, like myself, have found that once Lyme was identified as being the root of my clinical problems (fibromyalgia, nerve damage, brain fog, chronic fatigue, interstitial cystitis, possible lupus, arthritis at a young age, sudden onset of severe food intolerances, and more)--after being treated for more than a year (nearly 18 months) on antibiotic cocktails, plus with periods of pulse antibiotics--my symptoms disappeared. Until I was reinfected over and over again. And each time treatment works to reverse the crazy debilitating symptoms INCLUDING depression. Furthermore, I am not a one-off. My Lyme-literate physician has treated hundreds of us with the same results, even if we don't all share the exact same misdiagnoses or symptoms. Prolonged and varied exposure to antibiotics saved my life. When I was struggling to get from the sofa to the bathroom--and given four to six weeks to live in my mid-forties--my Lyme-literate physician saved my life by treating me for the UNDERLYING CAUSE...let me repeat that in case you didn't read it correctly...he treated me for the UNDERLYING CAUSE of all my misdiagnoses and illnesses, and cured my fibro, much of my nerve damage, most of my brain fog and chronic fatigue, my interstitial cystitis, Lyme arthritis, severe food allergies (inability to breathe if I ate certain foods), and even my depression and anxiety. So, I will return to my agreement with the Research Needs findings: MORE UNBIASED RESEARCH NEEDS TO OCCUR IN THE AREA OF CHRONIC LYME.
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TWO) Please make these "...two most commonly identified coinfections" more common knowledge to physicians, health professionals, and patients. That is: Anaplasma and Babesia, both of which I have fought twice in my five times dealing with being re-infected with Lyme. The first time I had Babesia I thought I was going to die. It was soon after my urologist had informed me that I had perhaps four to six weeks to live, and another urologist announced that only surgically removing my bladder would heal me. I went running from both physicians. Fortunately, an astute physician assistant recognized my years of accumulated symptoms and diagnoses as being most probably a missed Lyme diagnosis since the test is so pathetically weak at identifying most strains of Lyme. Soon after being treated for my CHRONIC Lyme, I became an all-new-level of ill; I was diagnosed with Babesia, but it was late for me, and I was so sick I was certain my exhausted body and compromised immune system would not survive. Obviously, I did survive, or else I wouldn't be irritating you with my comments now.
.
THREE) As to Bartonella, the line beginning at 1563 and winding to 1564*, seems ill researched. I want more research into this and, again, more dialogue with physicians and health providers so that they at least look for Bartonella too, among their deep dive into what is making their patients so sick. I have been diagnosed with Bartonella three times. I am not alone. I could make a large enough club of Bartonella and Lyme members to elect me president if I decided to run. Okay, perhaps that is hyperbolic, but not by much. I think you know that too, but for some reason you don't want the medical community or patients to know.
* "While I. scapularis may take blood meals from animals infected with Bartonella species, transmission to humans has not been identified.”
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FOUR) Regarding Research Needs that states "further studies determining the frequency of I. scapularis-transmitted co-infections in different geographic areas of the U.S. are warranted" I agree. I also agree that "Further investigations are needed to study the cost-effectiveness of multiplex laboratory assays for the simultaneous diagnosis of multiple coinfections." And I would go one step further in saying that a study into the cost-effectiveness and reliability-effectiveness of laboratory testing for Lyme needs to be further researched, and testing needs to be expanded to identify all strains of Lyme disease.
.
FIVE) There are 100 pages here and 203 pages in the supplement, and a deadline for comments by August 10. I have two complaints to register:
1) The reports are too long for most Lyme patients to even skim, never mind read carefully.
2) For some reason your organization feels compelled to warn: "Draft - Do Not Distribute," which completely negates the opportunity to spread the word about the draft and to get others to take the time to comment.
Do you or do you not want people to comment? I believe you do not.
In fact, I believe you want to play the part of the martyr who gets to say, "But we put the drafts out for open comment, and only X number of people actually took the time to do so. If there are so many Lyme patients out there in the world, we have no evidence of it."
My recommendation is to find area reps who can field focus group-style comments from caregivers, physicians, nurses, patients, holistic caregivers, family and friends of Lyme patients, etc., to pull together fact and anecdotal reports, plus gather and organize the comments and recommendations. If you took the time to do this correctly, you would actually represent the entire community--including the International Lyme and Associated Diseases Society (ILADS).
If you will endeavor to do such good work, I will offer to put aside my third Lyme conspiracy novel and help you as a representative in my area of Central New Hampshire. Thank you.
.
SIX) The table has no number, so just go to the page to see what I am referring to, please.
In the top of the table, under the subheading "Certainty assessment," three columns in is the listing "Risk of bias."
I believe your own bias negates the findings as to serious or not serious in each section citing a study. The reason I believe your bias overshadows everything in both this supplemental report and in the overall report is that the use of antibiotics to treat so many misdiagnoses, which have in common the underlying CAUSE of Lyme bacteria, actually would lose money for the pharmaceutical companies and for many physicians and other caregivers who are opting to surgically remove bladders, ordering CT Scans and MRIs, prescribing expensive drugs to treat one ailment--potentially creating a cascading event of other ailments.
The entire medical field, the government-supported medical groups and organizations, are compromised by the pharmaceutical and medical lobbyists who pay to keep their drugs and expensive medical procedures active, while discounting the use of relatively inexpensive antibiotics. After all, if someone has ALS, which potentially can be treated with antibiotics, it would put many of the medical providers and drug manufacturers out of business.
It is time to clean house, and to make sure that no seriously biased individuals or groups have a seat at any table where national Lyme Disease Guidelines are being formed.
Please join me in leaving your comments on the Lyme Disease Guidelines. Follow the link above or below!
Feel free to comment on my blog too, but please be polite. Judge not until you've walked a mile in my shoes. That's saying something, since I cannot everyday walk a full mile as I juggle my on-going symptoms of Lyme, Bartonella, Babesia, and the lingering effects of the Powassan Virus.
.
ONE) First, I will agree with the Research Needs evaluation of Chronic Lyme: That further studies need to be done. But in reference to line 1495 (and 1496) I wish that more of an effort would be made to understand that many of us in the Lyme literate world recognize Chronic Lyme as being a case of Lyme that has gone misdiagnosed and/or undiagnosed, often for years, and that the language in these lines "...prolonged antimicrobial therapy is not helpful" actually hurts a huge number of patients who, like myself, have found that once Lyme was identified as being the root of my clinical problems (fibromyalgia, nerve damage, brain fog, chronic fatigue, interstitial cystitis, possible lupus, arthritis at a young age, sudden onset of severe food intolerances, and more)--after being treated for more than a year (nearly 18 months) on antibiotic cocktails, plus with periods of pulse antibiotics--my symptoms disappeared. Until I was reinfected over and over again. And each time treatment works to reverse the crazy debilitating symptoms INCLUDING depression. Furthermore, I am not a one-off. My Lyme-literate physician has treated hundreds of us with the same results, even if we don't all share the exact same misdiagnoses or symptoms. Prolonged and varied exposure to antibiotics saved my life. When I was struggling to get from the sofa to the bathroom--and given four to six weeks to live in my mid-forties--my Lyme-literate physician saved my life by treating me for the UNDERLYING CAUSE...let me repeat that in case you didn't read it correctly...he treated me for the UNDERLYING CAUSE of all my misdiagnoses and illnesses, and cured my fibro, much of my nerve damage, most of my brain fog and chronic fatigue, my interstitial cystitis, Lyme arthritis, severe food allergies (inability to breathe if I ate certain foods), and even my depression and anxiety. So, I will return to my agreement with the Research Needs findings: MORE UNBIASED RESEARCH NEEDS TO OCCUR IN THE AREA OF CHRONIC LYME.
.
TWO) Please make these "...two most commonly identified coinfections" more common knowledge to physicians, health professionals, and patients. That is: Anaplasma and Babesia, both of which I have fought twice in my five times dealing with being re-infected with Lyme. The first time I had Babesia I thought I was going to die. It was soon after my urologist had informed me that I had perhaps four to six weeks to live, and another urologist announced that only surgically removing my bladder would heal me. I went running from both physicians. Fortunately, an astute physician assistant recognized my years of accumulated symptoms and diagnoses as being most probably a missed Lyme diagnosis since the test is so pathetically weak at identifying most strains of Lyme. Soon after being treated for my CHRONIC Lyme, I became an all-new-level of ill; I was diagnosed with Babesia, but it was late for me, and I was so sick I was certain my exhausted body and compromised immune system would not survive. Obviously, I did survive, or else I wouldn't be irritating you with my comments now.
.
THREE) As to Bartonella, the line beginning at 1563 and winding to 1564*, seems ill researched. I want more research into this and, again, more dialogue with physicians and health providers so that they at least look for Bartonella too, among their deep dive into what is making their patients so sick. I have been diagnosed with Bartonella three times. I am not alone. I could make a large enough club of Bartonella and Lyme members to elect me president if I decided to run. Okay, perhaps that is hyperbolic, but not by much. I think you know that too, but for some reason you don't want the medical community or patients to know.
* "While I. scapularis may take blood meals from animals infected with Bartonella species, transmission to humans has not been identified.”
.
FOUR) Regarding Research Needs that states "further studies determining the frequency of I. scapularis-transmitted co-infections in different geographic areas of the U.S. are warranted" I agree. I also agree that "Further investigations are needed to study the cost-effectiveness of multiplex laboratory assays for the simultaneous diagnosis of multiple coinfections." And I would go one step further in saying that a study into the cost-effectiveness and reliability-effectiveness of laboratory testing for Lyme needs to be further researched, and testing needs to be expanded to identify all strains of Lyme disease.
.
FIVE) There are 100 pages here and 203 pages in the supplement, and a deadline for comments by August 10. I have two complaints to register:
1) The reports are too long for most Lyme patients to even skim, never mind read carefully.
2) For some reason your organization feels compelled to warn: "Draft - Do Not Distribute," which completely negates the opportunity to spread the word about the draft and to get others to take the time to comment.
Do you or do you not want people to comment? I believe you do not.
In fact, I believe you want to play the part of the martyr who gets to say, "But we put the drafts out for open comment, and only X number of people actually took the time to do so. If there are so many Lyme patients out there in the world, we have no evidence of it."
My recommendation is to find area reps who can field focus group-style comments from caregivers, physicians, nurses, patients, holistic caregivers, family and friends of Lyme patients, etc., to pull together fact and anecdotal reports, plus gather and organize the comments and recommendations. If you took the time to do this correctly, you would actually represent the entire community--including the International Lyme and Associated Diseases Society (ILADS).
If you will endeavor to do such good work, I will offer to put aside my third Lyme conspiracy novel and help you as a representative in my area of Central New Hampshire. Thank you.
.
SIX) The table has no number, so just go to the page to see what I am referring to, please.
In the top of the table, under the subheading "Certainty assessment," three columns in is the listing "Risk of bias."
I believe your own bias negates the findings as to serious or not serious in each section citing a study. The reason I believe your bias overshadows everything in both this supplemental report and in the overall report is that the use of antibiotics to treat so many misdiagnoses, which have in common the underlying CAUSE of Lyme bacteria, actually would lose money for the pharmaceutical companies and for many physicians and other caregivers who are opting to surgically remove bladders, ordering CT Scans and MRIs, prescribing expensive drugs to treat one ailment--potentially creating a cascading event of other ailments.
The entire medical field, the government-supported medical groups and organizations, are compromised by the pharmaceutical and medical lobbyists who pay to keep their drugs and expensive medical procedures active, while discounting the use of relatively inexpensive antibiotics. After all, if someone has ALS, which potentially can be treated with antibiotics, it would put many of the medical providers and drug manufacturers out of business.
It is time to clean house, and to make sure that no seriously biased individuals or groups have a seat at any table where national Lyme Disease Guidelines are being formed.
Please join me in leaving your comments on the Lyme Disease Guidelines. Follow the link above or below!
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