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The Incidence of Lyme Disease in the US
On the thread discussing alternative diagnoses there posts got off track - my fault - discussing whether or not the CDC had gone on record stating that they believed that there more than 200,000 new cases of Lyme Disease every year.
I am starting this thread to continue this discussion. Because the tone was heated several of the posts were deleted pending review by the moderators. These will be replaced on this thread if, on review, they are felt to be okay.
I suggest that we start over in the discussion.
Quix
I am starting this thread to continue this discussion. Because the tone was heated several of the posts were deleted pending review by the moderators. These will be replaced on this thread if, on review, they are felt to be okay.
I suggest that we start over in the discussion.
Quix
Why won't they test for lyme in Georgia. They keep saying there are no cases of lyme in GA but the doctors will not test for it. I live in the foothills of the appalachian mountains. lyme disease is in tn, north carolina, but not ga. Lyme disease cases have been reported 30 miles away from me yet they still say it is not in my area. So my theory on this is doctors do not test therefore they do not have any positive cases to report to the cdc. This wuld be the reason that lyme is not in GA. I think it is here but since there are no reported cases because they do not test for it, then most dr. assume it is not down here. I wish they would open there eyes they are intelligent ppl if Lyme is 30 miles away I think it is safe to say that any kind of animal that carries parasites can travel that far in a day, with the parasites. thus bringing Lyme disease into the area. I am so tired, i have decided that i must just be a mental case because no dr.'s will listen to me and I am running out of money. Good luck to all and if anyone finds a good doctor in the North Georgia area please let me know.
Re Quix's comment about ILADS symptom list:
Does anyone know how the symptom list was created (AFAIK, ILADS doesn't seem to rely on any objective test due to Lyme's elusiveness). Does it ultimately trace back to those symptoms normally accompanied by conventional blood tests that show positive by some criterion?
Does anyone know how the symptom list was created (AFAIK, ILADS doesn't seem to rely on any objective test due to Lyme's elusiveness). Does it ultimately trace back to those symptoms normally accompanied by conventional blood tests that show positive by some criterion?
Can anyone explain or has reference for how the CDC ELISA/Western Blot criteria were decided to begin with?
I say "yes" As well. I also say that you have once again brought tears to my eyes and joy to my heart again... at Christmas....again....
Quix.. When you read the book you will find that MS is the one disease that she does NOT try to link lyme as a possible cause.She actually focuses more on ALS. Which I find very interesting given that I know 3 people who had been dx with and treated for lyme several years ago and now have ALS. (ages ranging from 50's to 36).
I do appreciate everyone's supoort and attempt to create a home for those of us that feel uncomfortable elsewhere.
Happy Holidays
Rebeccah
Quix.. When you read the book you will find that MS is the one disease that she does NOT try to link lyme as a possible cause.She actually focuses more on ALS. Which I find very interesting given that I know 3 people who had been dx with and treated for lyme several years ago and now have ALS. (ages ranging from 50's to 36).
I do appreciate everyone's supoort and attempt to create a home for those of us that feel uncomfortable elsewhere.
Happy Holidays
Rebeccah
Quix, I say yes. I'm all for learning more of Lyme, as of any other great mimickers, and perhaps this reflects that I'm all for any type of answers. The better educated we are (the forum), the better off we are. I say, Yes, we should give Limbolanders more advice on this matter,... and perhaps? we should warn them it may be an uphill battle, as Lyme is a touchy subject not only among us patients but among many dr.'s as well, so be sure to point them to the thread on "how to handle your doctor" (laughing).
~Sunnytoday~
~Sunnytoday~
I, too, am glad this thread took off. I checked it twice last night and there had been no responses. Rebeccah PM'd me with her info about the real source of the CDC/200,000 cases info and I asked her to post it here.
As always I have stuff to say, but it might not make a lot of sense. It is one thing to get an unofficial, verbal opinion from a high-ranking CDC officer and quite another to proclain that an entire institution has made that fact an official position. Nonetheless, the person given credit for the statement is in the best position in all of the CDC to make the appraisal of some many possible new Lyme cases a year. That is the information I sought, and Rebeccah found it for me/us. Thank you sooo much!
As a doc myself, the whole Lyme issue seems to walk a line between hysteria and The Dark Ages. I don't believe that either side has proved it's case. Traditional Medicine is not acknowledging the scope of the problem and is treating Lyme and related diseases as if they were as simple as strep throat. I find it horrifying that an Infectious Disease doc would refuse to treat a CDC-Positive test. The CDC has kept the diagnosis of Lyme quite rigid. Meanwhile we have some fanatical Lyme people trying to say that all MS is actually Lyme and that millions of cases are going untreated. The people with Lyme who or who suspect they may have it are caught in the middle and without financial help that they would have for far more rare illnesses.
How do we discuss an illness with no reliable diagnostic test, no markers to assess effectiveness of treatment and no way to determine cure or when antibiotics have done all they can do? It is accepted that Lyme Disease is diagnosed clinically. If, indeed, all we can go by is all the symptoms that everyone attributes to Lyme, then all persons with any symptoms at all and no diagnosis have Lyme Disease by definition. There has to be some better assessment of the symptoms that really are common in Lyme. ILADS, one of recognized official bodies for Lyme Disease research and knowledge does put out a list of symptoms that is narrower and not 101 items long. I have tried to use that list when I narrow in on Lyme Disease for the forum.
We also need a place where people who are used to relying on evidence-based information can discuss what is known, what is suspected, and who can have a support system free of hysteria. There is no reason that we can't discuss the whole topic here and without name-calling or evangelism. So, I will do the necessary reading, but will continue to focus my research time on MS. We could devote space here for people who have not been comfortable on the usual Lyme forums.
After all, Lyme Disease is one of the closest mimics of MS there is....or given it's possible incidence, MS is one of the closest mimics to Lyme. If nothing else, the issue of Lyme Disease is big enough to warrant more advice on our part to the Limbolanders to see that evaluation for and consideration of Lyme is thorough.
Whaddysay??
Quix
As always I have stuff to say, but it might not make a lot of sense. It is one thing to get an unofficial, verbal opinion from a high-ranking CDC officer and quite another to proclain that an entire institution has made that fact an official position. Nonetheless, the person given credit for the statement is in the best position in all of the CDC to make the appraisal of some many possible new Lyme cases a year. That is the information I sought, and Rebeccah found it for me/us. Thank you sooo much!
As a doc myself, the whole Lyme issue seems to walk a line between hysteria and The Dark Ages. I don't believe that either side has proved it's case. Traditional Medicine is not acknowledging the scope of the problem and is treating Lyme and related diseases as if they were as simple as strep throat. I find it horrifying that an Infectious Disease doc would refuse to treat a CDC-Positive test. The CDC has kept the diagnosis of Lyme quite rigid. Meanwhile we have some fanatical Lyme people trying to say that all MS is actually Lyme and that millions of cases are going untreated. The people with Lyme who or who suspect they may have it are caught in the middle and without financial help that they would have for far more rare illnesses.
How do we discuss an illness with no reliable diagnostic test, no markers to assess effectiveness of treatment and no way to determine cure or when antibiotics have done all they can do? It is accepted that Lyme Disease is diagnosed clinically. If, indeed, all we can go by is all the symptoms that everyone attributes to Lyme, then all persons with any symptoms at all and no diagnosis have Lyme Disease by definition. There has to be some better assessment of the symptoms that really are common in Lyme. ILADS, one of recognized official bodies for Lyme Disease research and knowledge does put out a list of symptoms that is narrower and not 101 items long. I have tried to use that list when I narrow in on Lyme Disease for the forum.
We also need a place where people who are used to relying on evidence-based information can discuss what is known, what is suspected, and who can have a support system free of hysteria. There is no reason that we can't discuss the whole topic here and without name-calling or evangelism. So, I will do the necessary reading, but will continue to focus my research time on MS. We could devote space here for people who have not been comfortable on the usual Lyme forums.
After all, Lyme Disease is one of the closest mimics of MS there is....or given it's possible incidence, MS is one of the closest mimics to Lyme. If nothing else, the issue of Lyme Disease is big enough to warrant more advice on our part to the Limbolanders to see that evaluation for and consideration of Lyme is thorough.
Whaddysay??
Quix
Sunny,
Your experience with your doctor is a good example of how poorly understood Lyme is and how testing is an uphill battle. I too found it difficult, actually impossible, to be tested. I had to pay privately (and am still waiting for results).
And as Rebeccah's story demonstrates, you can have a CDC negative Western blot and still have Lyme disease. Yet another example of why keeping your own records is of such importance, a theme with which I know you are familiar.
Your doctor's denial of neurological manifestations of Lyme disease is startling, but again, a good example of how misinformed doctors can be on the subject. Lyme disease can and does cause brain lesions. I have many brain lesions. Lyme and demyelinating disease are listed as possible etiologies on both sets of radiologist reports, which were written by different doctors at different times for the two brain MRIs that I had done. I do not think Lyme is known to cause o-bands, but I wouldn't trust that particular doctor to clarify any questions about Lyme.
In the more classic presentation of Lyme, the nervous system is only attacked in later stages. However, my earliest symptoms were neurological. I never had a bulls-eye rash, I don't recall a tick bite. The common portrayal of Lyme does not represent me at all.
I am still anxiously waiting to see the entire film, but a short trailer of a documentary called "Under Our Skin" can be viewed online if you search for the title. It only takes about 3 minutes to watch. It helped me to see that not all Lyme patients are alike in terms of symptoms, presentation, risk factors, and so on.
Kathy,
I think I must have missed the heated part of the other thread. That's probably for the best. I'm glad efforts were made to correct the situation, I can't express how hypersensitive I am on the subject right now.
I hope nothing that I wrote contributed to pushing your buttons. We all feel bad when we let our emotions get the better of us. I'm glad you are feeling better now.
To the CL's: While I missed the fuss, I am glad it has been addressed and thank you for your efforts to keep productive communication open.
To the rest of ya'll, lots of hugs!
Your experience with your doctor is a good example of how poorly understood Lyme is and how testing is an uphill battle. I too found it difficult, actually impossible, to be tested. I had to pay privately (and am still waiting for results).
And as Rebeccah's story demonstrates, you can have a CDC negative Western blot and still have Lyme disease. Yet another example of why keeping your own records is of such importance, a theme with which I know you are familiar.
Your doctor's denial of neurological manifestations of Lyme disease is startling, but again, a good example of how misinformed doctors can be on the subject. Lyme disease can and does cause brain lesions. I have many brain lesions. Lyme and demyelinating disease are listed as possible etiologies on both sets of radiologist reports, which were written by different doctors at different times for the two brain MRIs that I had done. I do not think Lyme is known to cause o-bands, but I wouldn't trust that particular doctor to clarify any questions about Lyme.
In the more classic presentation of Lyme, the nervous system is only attacked in later stages. However, my earliest symptoms were neurological. I never had a bulls-eye rash, I don't recall a tick bite. The common portrayal of Lyme does not represent me at all.
I am still anxiously waiting to see the entire film, but a short trailer of a documentary called "Under Our Skin" can be viewed online if you search for the title. It only takes about 3 minutes to watch. It helped me to see that not all Lyme patients are alike in terms of symptoms, presentation, risk factors, and so on.
Kathy,
I think I must have missed the heated part of the other thread. That's probably for the best. I'm glad efforts were made to correct the situation, I can't express how hypersensitive I am on the subject right now.
I hope nothing that I wrote contributed to pushing your buttons. We all feel bad when we let our emotions get the better of us. I'm glad you are feeling better now.
To the CL's: While I missed the fuss, I am glad it has been addressed and thank you for your efforts to keep productive communication open.
To the rest of ya'll, lots of hugs!
I apologize for my part in the heated discussion on the hijacked alternative diagnosis post. I promise to be more thoughtful and less reactive. I let my buttons get pushed, and I really dislike it when I allow that to happen.
I'm very open to learning more about what my fellow limbo-landers are going through. It sounds like Lyme disease is very controversial and difficult to diagnose. I really had no idea of the depth of the issues surrounding Lyme disease. I was just happy that my Western Blot was negative.
Thank you, all, for bringing us a clearer picture and access to the research that is being done and the difficulties of fitting into the established criteria and getting treatment; reminds me of not fitting the "textbook" presentation of MS.
Rebeccah, you're still a part of this forum, too, and I want to thank you for sharing what you've been going through and the fact that the meds gave you your life and function back.
Kathy
I'm very open to learning more about what my fellow limbo-landers are going through. It sounds like Lyme disease is very controversial and difficult to diagnose. I really had no idea of the depth of the issues surrounding Lyme disease. I was just happy that my Western Blot was negative.
Thank you, all, for bringing us a clearer picture and access to the research that is being done and the difficulties of fitting into the established criteria and getting treatment; reminds me of not fitting the "textbook" presentation of MS.
Rebeccah, you're still a part of this forum, too, and I want to thank you for sharing what you've been going through and the fact that the meds gave you your life and function back.
Kathy
is this why it is so hard to get tested for lyme? I had to ask two doctors, and finally my MD, did it and my local lab ran the work and it came back and said that the western blot wouldn't run because it was not specified for patients in which the Elisa wasn't positive, even though the doctor had ordered them simultaneously.
I tested negative on both the elisa and western blot that was ran at our local lab.
This is a postive thread, and I'm thankful that it was ran so that we can be better educated about mimics. My primary care MD looked me in the eye and said that Lyme doesn't cause spots on the MRI, or bands in the spinal tap, or in fact any neurological symptoms, and he would only run the test to make my mum happy.
~Sunnytoday~
I tested negative on both the elisa and western blot that was ran at our local lab.
This is a postive thread, and I'm thankful that it was ran so that we can be better educated about mimics. My primary care MD looked me in the eye and said that Lyme doesn't cause spots on the MRI, or bands in the spinal tap, or in fact any neurological symptoms, and he would only run the test to make my mum happy.
~Sunnytoday~
My neuro recommended an infectious disease doctor to me after he saw my CDC positive WB that was run through Igenex. When I went to see him I found he is a member of the Infectious Disease Society of America. I asked him which lab his office uses when testing for Lyme; it was like pulling teeth but he finally told me they use Igenex.
He is not willing to help me, but handed my husband a post it note with the name of the IV abx he would suggest, along with length of treatment to start and told us "any dr can do this for you". It was surreal.
I don't blame him. The IDSA drs just don't want a Lyme patent in their records, in my opinion.
He is not willing to help me, but handed my husband a post it note with the name of the IV abx he would suggest, along with length of treatment to start and told us "any dr can do this for you". It was surreal.
I don't blame him. The IDSA drs just don't want a Lyme patent in their records, in my opinion.
Rebeccah's response was very well done. As for me, I don't wear two hats. I think I'm more of a "beanie cap with a busted propeller." But I do have a reaction that I'd like to share.
Quix has asked an importnat and reasonable question. My response is based on how I am feeling as I try to learn and understand more about Lyme as a recently clinically diagnosed patient. (That is, to date I have no supporting lab results.)
Empiricism is dependent on evidence. For me so far, everything with Lyme is square pegs in round holes. If the tests are faulty, if the integrity of the labs doing the tests is questionable, if methods for reporting test results are faulty, if the CDC criteria for diagnosis are too rigid, and if lack of awareness is contributing to missed or misdiagnosis, then the reported incidence of Lyme holds little meaning.
I think Lyme patients often feel the burden of proof is on us. I know that misinformation affected my diagnosis and that it will affect my treatment, including the cost. I know that the reactionary communication of these frustrations can back fire, and further stigmatize Lyme.
What I am trying to express is how easy it is for any discussion of Lyme to become confused and even heated. As a Lyme patient, I think I can appreciate this from different points of view: I have been overwhelmed by some Lyme advocates and their ideas. At the same time, I went through so much to arrive at my diagnosis and treatment, I want to scream and shout to alert others to this mess.
I really appreciate that this topic being reconsidered after it hijacked the alternative diagnosis thread. I hope that the recent ideas we've shared help inform people about Lyme disease. To me, simply communicating that Lyme is a misunderstood and misdiagnosed infectious disease is more powerful than any available qunatitative measure.
Quix has asked an importnat and reasonable question. My response is based on how I am feeling as I try to learn and understand more about Lyme as a recently clinically diagnosed patient. (That is, to date I have no supporting lab results.)
Empiricism is dependent on evidence. For me so far, everything with Lyme is square pegs in round holes. If the tests are faulty, if the integrity of the labs doing the tests is questionable, if methods for reporting test results are faulty, if the CDC criteria for diagnosis are too rigid, and if lack of awareness is contributing to missed or misdiagnosis, then the reported incidence of Lyme holds little meaning.
I think Lyme patients often feel the burden of proof is on us. I know that misinformation affected my diagnosis and that it will affect my treatment, including the cost. I know that the reactionary communication of these frustrations can back fire, and further stigmatize Lyme.
What I am trying to express is how easy it is for any discussion of Lyme to become confused and even heated. As a Lyme patient, I think I can appreciate this from different points of view: I have been overwhelmed by some Lyme advocates and their ideas. At the same time, I went through so much to arrive at my diagnosis and treatment, I want to scream and shout to alert others to this mess.
I really appreciate that this topic being reconsidered after it hijacked the alternative diagnosis thread. I hope that the recent ideas we've shared help inform people about Lyme disease. To me, simply communicating that Lyme is a misunderstood and misdiagnosed infectious disease is more powerful than any available qunatitative measure.
Howdy Folks
I wear 2 hats for this discussion one is that of a lyme patient and the other is that of a clinician that reads A LOT. It is important to me that I have access to well referenced materials. I like to see/read the primary source or "the horses mouth" that said everything first or did the actual study. Not the 50 authors that quote the "horse" and their interupration or only half of the research.
With that said below are the listed statements or quotes from Weintraubs book and her sited sources
"more than 23,000 cases falling within the CDC's circumscribed definition for lyme disease." is from "Morbidity and Mortality" Weekly Report, March 30 2007; 54 no.53
The " a number the CDC estimates is 10% of the total such cases in the United States. At more than 200,00 new cases a year, Lyme has become one of the fastest growing spreading in fection in the United states." Reference: Telephone interview with C. Ben Beard, PhD. chief of Bacterial Disease Branch of the Division of Vector- Borne Infedtious Diseases of the CDC, 2007.
A telephone interview is not going to cut it as a CDC statement.
Now that you guys know what I look for when reading ... this book is excellent. Her notes and references is 20 pages front and back. It's a good read... As a lyme patient... I don't know what to say... I was told I may have a list of terrible diseases or that I was crazy.
I never thought I would be on treatment for a year. Nope I wasn't going to be one of THOSE lyme patients. But here I am ...one of THOSE. I have my life and function back. I tried to go off the meds this summer and relapsed with full blown neuro symptoms. I have met one to two a newly diagnosed lyme patients a month in my community in the last year. My case is not reported becasue I do not meet the CDC criteria of 5 out of 10 bands igg and 2 out of 3 bands igm.
I know all of you understand what I mean when I say I feel stuck, abandoned and alone even though I have a dx because it is so contraversial. Docs that try to help us are reported...the testing ***** there is not enough supportive research to indicate a treatment that works. I could just go on and on but you guys know because it's the same story just different dx.
So I lurk...
Rebeccah
I wear 2 hats for this discussion one is that of a lyme patient and the other is that of a clinician that reads A LOT. It is important to me that I have access to well referenced materials. I like to see/read the primary source or "the horses mouth" that said everything first or did the actual study. Not the 50 authors that quote the "horse" and their interupration or only half of the research.
With that said below are the listed statements or quotes from Weintraubs book and her sited sources
"more than 23,000 cases falling within the CDC's circumscribed definition for lyme disease." is from "Morbidity and Mortality" Weekly Report, March 30 2007; 54 no.53
The " a number the CDC estimates is 10% of the total such cases in the United States. At more than 200,00 new cases a year, Lyme has become one of the fastest growing spreading in fection in the United states." Reference: Telephone interview with C. Ben Beard, PhD. chief of Bacterial Disease Branch of the Division of Vector- Borne Infedtious Diseases of the CDC, 2007.
A telephone interview is not going to cut it as a CDC statement.
Now that you guys know what I look for when reading ... this book is excellent. Her notes and references is 20 pages front and back. It's a good read... As a lyme patient... I don't know what to say... I was told I may have a list of terrible diseases or that I was crazy.
I never thought I would be on treatment for a year. Nope I wasn't going to be one of THOSE lyme patients. But here I am ...one of THOSE. I have my life and function back. I tried to go off the meds this summer and relapsed with full blown neuro symptoms. I have met one to two a newly diagnosed lyme patients a month in my community in the last year. My case is not reported becasue I do not meet the CDC criteria of 5 out of 10 bands igg and 2 out of 3 bands igm.
I know all of you understand what I mean when I say I feel stuck, abandoned and alone even though I have a dx because it is so contraversial. Docs that try to help us are reported...the testing ***** there is not enough supportive research to indicate a treatment that works. I could just go on and on but you guys know because it's the same story just different dx.
So I lurk...
Rebeccah
JulieBob commented in her post on another thread that the CDC has stated that there are more than 200,000 new cases of Lyme disease in the US each year.
I have been following the CDC and it's case numbers. I have not seen anything like that number. I have not seen any statement by the CDC that speaks of these numbers.
I would like to read the "source" from which this statement is taken. That means I would like to read the statement "by the CDC" which says that these are the numbers they are using in their calculations. I don't disbelieve it, but I would like to see the context in which they said it. Please do not give as a real source the fact that someone else (like an author) has said it. People may hear something and quote it and perhaps get it wrong and then other people quote the first person and it suddenly becomes a new fact. I just want to see "where" the CDC said it.
This is the data that I have from the CDC.
"U.S. Case Counts and Rates
During 1992--2006, a total of 248,074 Lyme disease cases were reported to CDC. Although annual counts fluctuated by as much as 57% from year to year, the overall trend indicates a steady increase in the number of reported cases (Figure 1). During the 15-year study period, the number of cases reported increased 101%, from 9,908 cases in 1992 to 19,931 cases in 2006. "
Here is the document, the MMWR from October, 2008
http://www.cdc.gov/mmwr/preview/mmwrhtml/ss5710a1.htm
Clearly the reported cases are less than actual cases and the number of cases is on the rise. The number I have read repeatedly is that the number of new cases in 2007 was just under 40,000. I only bring this up, because the numbers you mention and the numbers I have read are so different.
This infectious disease is so common that we all have to keep it in mind and reinvestigate it, even if the initial testing was negative.
Quix
I have been following the CDC and it's case numbers. I have not seen anything like that number. I have not seen any statement by the CDC that speaks of these numbers.
I would like to read the "source" from which this statement is taken. That means I would like to read the statement "by the CDC" which says that these are the numbers they are using in their calculations. I don't disbelieve it, but I would like to see the context in which they said it. Please do not give as a real source the fact that someone else (like an author) has said it. People may hear something and quote it and perhaps get it wrong and then other people quote the first person and it suddenly becomes a new fact. I just want to see "where" the CDC said it.
This is the data that I have from the CDC.
"U.S. Case Counts and Rates
During 1992--2006, a total of 248,074 Lyme disease cases were reported to CDC. Although annual counts fluctuated by as much as 57% from year to year, the overall trend indicates a steady increase in the number of reported cases (Figure 1). During the 15-year study period, the number of cases reported increased 101%, from 9,908 cases in 1992 to 19,931 cases in 2006. "
Here is the document, the MMWR from October, 2008
http://www.cdc.gov/mmwr/preview/mmwrhtml/ss5710a1.htm
Clearly the reported cases are less than actual cases and the number of cases is on the rise. The number I have read repeatedly is that the number of new cases in 2007 was just under 40,000. I only bring this up, because the numbers you mention and the numbers I have read are so different.
This infectious disease is so common that we all have to keep it in mind and reinvestigate it, even if the initial testing was negative.
Quix
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