Why the Government is Suppressing the Lyme Disease Epidemic

Medical topics with questions, information and discussion related to Lyme disease and other tick-borne diseases.
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duncan
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Re: Why the Government is Suppressing the Lyme Disease Epide

Post by duncan » Thu 8 Jan 2015 21:32

Henry.

I'm going to take this slowly.

Questionnaires are a type of survey. Period. You should know this. That you don't...speaks volumes.

Data collected in the survey can include symptoms - both self-reported and observed - and clinical history and diagnostics' results. They can include many data points.

Employing a survey and supporting the use of diagnostics are NOT mutually exclusive.

I am trying to be polite to you.

Henry
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Re: Why the Government is Suppressing the Lyme Disease Epide

Post by Henry » Thu 8 Jan 2015 21:58

I won't quibble about the semantics. What I want you to tell me is what specific information must be included in the survey to enable you to determine that a given patient has Lyme disease -- in the absence of objective diagnostic tests which you distrust? Can you give me a list? That's all I'm asking. To put it another way, you visit a physician and tell him/her that you think you have Lyme disease. He/she then ask, how do you know? What do you tell him/her? Please understand that I don't mean to exclude diagnostic test that I feel -- but you and Lorima distrust-- are important. If you agree, then tell me which tests you feel are important?

duncan
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Re: Why the Government is Suppressing the Lyme Disease Epide

Post by duncan » Thu 8 Jan 2015 22:16

Henry, for any researcher, the difference between surveys and questionnaires is hardly an exercise in semantics. I was under the impression you had some research credentials.

I have no idea how to answer your convoluted post. I believe when possible, diagnostics can be used. I have reservations about the current crop of offerings. For instance, I think if they prove positive, they may demonstrate active Lyme, but if negative, those results might be meaningless. So, I would prefer more reliable diagnostics are developed.

You keep rehashing the same thing. I am frustrated with your inability to digest. Enough.

Henry
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Re: Why the Government is Suppressing the Lyme Disease Epide

Post by Henry » Thu 8 Jan 2015 22:56

Convoluted? What could be more simple and direct. I'm simply asking you to tell me why you think you have Lyme disease and you can't do it? It's OK to use the results of tests, i.e., the tests that you don't distrust.

dlf
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Re: Why the Government is Suppressing the Lyme Disease Epide

Post by dlf » Thu 8 Jan 2015 23:16

I have popped in from time to time over the last day, in order to take a break, only to find repetitive badgering and am wondering what is behind this discussion. It started with Henry asking to define a cohort (or several cohorts) for a new treatment trial and has now devolved into trying to goad Duncan into providing a personal definition. What is the point of this? Maybe more importantly, what is the actual motive?

Henry, if you really want to know about how physicians go about making a clinical diagnosis of Lyme, I would suggest you read the following: Hold your nose, if you need to, through the abstract and introduction, but read the whole thing.
I will post some of it to give you a little incentive and maybe it will help separate in your mind the difference between diagnosis for undertaking research versus what a physician looks for when trying to figure out what is wrong with their patient.

http://www.jpands.org/vol14no3/maloney.pdf
The Need for Clinical Judgment in the Diagnosis and Treatment of Lyme Disease

Elizabeth L. Maloney, M.D. Journal of American Physicians and Surgeons Volume 14 Number 3 Fall 2009

<snip>
Physicians use pattern recognition as a common diagnostic heuristic. These cognitive “shortcuts,” when used properly, allow physicians to move quickly to the correct diagnosis. Pattern recognition transforms exposure, individual symptoms, and the course of illness into a unified diagnosis; it is why some physicians specifically see “Lyme disease” when colleagues see only a generalized “positive review of systems.” For physicians unfamiliar with the pattern of Lyme disease, serologic testing, combined with clinical data, offers the potential for reaching the correct diagnosis.
However, serology alone cannot confirm or deny presence of infection. In Lyme disease, there is no testing shortcut.

Furthermore, diagnostic criteria are situational. Clinical criteria are constructed to diagnose and treat ill patients. Research criteria are constructed to test a hypothesis in a uniform group of subjects; researchers have no duty to those excluded from the trial.

Surveillance criteria are much the same, the goal being selection of a homogeneous patient subset that can be observed over time and treatment. The difference between these situations is an important consideration. This distinction is highlighted by these comments from CDC epidemiologist Dr. Paul Mead.

A clinical diagnosis is made for the purpose of treating an individual patient and should consider the many details
associated with that patient’s illness. Surveillance case definitions are created for the purpose of standardization, not
patient care; they exist so that health officials can reasonably compare the number and distribution of “cases” over space and time. Whereas physicians appropriately err on the side of over-diagnosis, thereby assuring they don’t miss a case, surveillance case definitions appropriately err on the side of specificity, thereby assuring that they do not inadvertently capture illnesses due to other conditions.

Recognition of the differing goals allows knowledgeable physicians the discretion to diagnose Lyme disease in patients lacking the five of 10 bands required for admittance into the surveillance group. Failure to acknowledge the distinction results in many patients with Lyme disease remaining undiagnosed and untreated.
Gosh, I hope this helps resolve your issue, whatever your motive.

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LHCTom
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Re: Why the Government is Suppressing the Lyme Disease Epide

Post by LHCTom » Thu 8 Jan 2015 23:48

Everybody knows Henry's motives. His mind operates in the same general vein as Charlton Heston

He stands on a pedestal screaming:
"I'll care about people who suffer when you pry (or take) it from my cold, dead hands"
So why waste your time....Evil just exists... Sad but true!
The greater the ignorance, the greater the dogmatism.

Attributed to William Osler, 1902

Henry
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Re: Why the Government is Suppressing the Lyme Disease Epide

Post by Henry » Thu 8 Jan 2015 23:58

dlf: I really have no motives other than to try to determine an "under lying pattern" that can be used for the diagnosis of Lyme disease, one that does not rely on the use of objective diagnostic tests that some -- Duncan and Lorima-- distrust. Since Duncan has -- or believes he has, I don't really know or care-- late stage Lyme disease, I thought he might be able to enlighten us in that regard. So, what's wrong with that? However, it is becoming increasingly apparent that he is unable to do what I've asked, and has deliberately evaded addressing the simple question that I presented to him, i.e., "how do you know that you have Lyme disease? ". If he is unable to answer my questions, all he has to do is say so.

I often hear it stated that the diagnosis of Lyme disease is a clinical judgement. Fine. If that is the case, then would Duncan, Lorima, or anyone else tell me what information is used to make such a judgement? How about you, dlf. Do you have any ideas? I am not playing games. I just want an answer to a simple question, which appears to be impossible for some to answer. This is not a game. Most clinical judgements are based on a body of verifiable information that is accepted by the medical community. Is there anyone out there that can tell me what information can best be used to make a clinical judgement on whether or not a patient has Lyme disease? Or are these "just words". If you want to mention symptoms, which ones and how many? I suspect the diagnosis of Lyme disease means different things to different people. If so, this creates a huge communication problems since all are not talking about the same thing, but are unified only in the belief that they think they have Lyme disease. If that is the case, than this is just an "echo chamber" of believers.

phyfe
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Re: Why the Government is Suppressing the Lyme Disease Epide

Post by phyfe » Fri 9 Jan 2015 1:11

This thread has gone totally off topic. It needs to be locked down. Enough is enough! :roll:

dlf
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Re: Why the Government is Suppressing the Lyme Disease Epide

Post by dlf » Fri 9 Jan 2015 3:29

Well, phyfe, it has gone off topic, but so do a lot of other threads that eventually get back on track. If admin wants to break the thread up and create a new one for this topic, he will do so. In the meantime, I would like to respond to Henry.
Consider my motive as being that I need the practice.

Henry, you did not read the article to the end, or you would not have posted what you did. As you didn't find what you were sent to look at, I will post some of the applicable parts here. However, I would still encourage you to actually look at and read the rest of it, especially Table 3, which provides symptoms as per your request.
With serologic testing being insensitive, clinical data—the history and physical examination—become even more important. Relying on clinical data to make a diagnosis is not unique to Lyme disease. One study on the relative values of history, physical examination, and diagnostic studies found that internists used history alone to establish the
correct diagnosis in 76% of test cases. Another found that in distributing a 100% total relative value between these three types of data, clinical faculty valued history at 63.3%, physical examination at 19.2%, and laboratory/imaging data at 17.5%. Such evidence establishes that the diagnostic hierarchy proposed by the guidelines is inconsistent with the way medicine is practiced. A Lyme disease history begins with the potential for exposure. This history, while a key element, is not always enlightening. Patients may be unaware of whether they live/work/recreate in a Lyme endemic
area; they may forget about vacations in endemic areas. Questions regarding tick bites may lead to inappropriately ruling out Lyme disease; in one study on erythema migrans, only 14% of the patients recalled being bitten by a tick.
Clinically, and in keeping with its multisystemic nature, Lyme disease has been described as being “symptom rich, exam poor.” Symptoms may be specific or nonspecific, mundane or unusual, acute or chronic; some are prognostic. Some physicians have been criticized for “seeing Lyme everywhere” in that they recognize scores of symptoms beyond EM rashes, Bell’s palsy, and arthritis as being associated with Lyme disease. Yet, early researchers also noted these symptoms. In a treatment trial on early Lyme disease, Massarotti et al. found that subjects reported the following
symptoms: 56% had headache; 42%, stiff neck, with 19% having pain with neck flexion; 14%, dysesthesias; 11%, photophobia; and 4%, facial palsy. Consider these symptoms from Logigian et al., shown in Figure 1.

The wide array of Lyme disease symptoms is consistent with ability to infect multiple organ systems; nervous system involvement creates the potential for varied and atypical symptoms. Common symptoms include: EM rash, fever,
fatigue, headache, neck pain, joint or muscle pain, paresthesias, memory impairment, weakness of facial muscles, mood disorders, neuropathic pain. A compendium of manifestations by system is given in Table 3.

It is the multisystemic nature of the illness that provides physicians with useful diagnostic information. In fact, with the exception of an isolated EM rash or swollen joint, patients with symptoms restricted to a single system are unlikely to have Lyme disease. Recognizing the potential for disease is different from “seeing it everywhere.” Failure
to recognize Lyme disease may lead to serious harm, as antibiotics are delayed and the infection is unchecked.
The nonspecific nature of many Lyme disease symptoms leads some to suggest that such symptoms hold no diagnostic value. Lyme disease is like many other illnesses that present with nonspecific and often subtle symptoms—symptoms that may go unrecognized by physicians. Examples include hypothyroidism, ovarian cancer, and acute subendocardial myocardial infarction. What gives the individual symptoms of Lyme disease value is their occurrence in clusters; a single symptom means little but four or five may, for all practical purposes, make the case. Just as abdominal bloating, urinary urgency, and pelvic pain raise “red flags” for gynecologists, the combination of fatigue, paresthesias, arthralgias, and memory complaints presenting in a single patient commands the attention of physicians aware of these potential Lyme disease symptoms.

Steere et al. noted that patients with early Lyme disease who lacked an EM rash presented with an average of four or more symptoms. Fever, chills, malaise, and myalgia, all nonspecific, were present in 46%-71% of the patients with definite Lyme disease alone. In this group, it was the clustering of nonspecific symptoms in the appropriate setting that led to the correct diagnosis of Lyme disease. Logigian et al. also noted the nonspecific nature of identifying
symptoms: “The most common form of chronic central nervous system involvement in our patients was subacute encephalopathy affecting memory, mood, and sleep, sometimes with subtle disturbances in language. Diagnosis of this condition may be difficult because the typical symptoms are nonspecific [emphasis added].

To provide a clinical level of diagnostic sensitivity higher than two tier testing, physicians need to recognize the symptom clusters and maintain a high index of suspicion for Lyme disease. Symptoms not only form the basis of disease identification, they may also inform on prognosis. Dysesthesias, paresthesias, multiple EM lesions, increased irritability, persistent fatigue, headache, stiff neck, and increased severity of the initial illness were associated by various investigators in the early Lyme disease treatment trials with an increased risk of treatment failure. Symptoms
were also used in the trials as indicators that a strategy was working or needed to be altered. Findings on physical exam are usually subtle and limited; they may be variably present. The more common findings include: solitary or multiple EM lesions, manifestations of cranialneuritis (such as extraocular palsies, ptosis, decreased facial sensation, facial nerve palsy, decreased hearing), swollen and tender joints, diminished sensation, and motor weakness.
Cognitive deficits are usually not readily apparent on mental status testing, but patients may be disorganized or slow to respond to questions. A lack of physical findings does not necessarily indicate that the symptoms in those cases cannot be corroborated with objective evidence. Halperin et al. studied 14 patients with complaints of distal paresthesias; 10 had completely normal sensory, motor and reflex findings on examination, three had only mild sensory loss, and one had moderate sensory and motor loss coupled with decreased reflexes. All underwent EMG testing; 13 of
the 14 had “significant neurophysiologic findings.” Logigian et al. also found that detailed neuropsychometric testing could reveal cognitive deficits that were not apparent on routine mental status testing. Cost and time constraints do not allow for such complete testing in a community setting, but the studies suggests that with sufficiently detailed testing, objective evidence may be discovered and the subjective data supported. The absence of findings does not
equal absence of disease.
Even the EM rash has a variable presentation that may cause lessninformed physicians to miss it. An EM lesion may have one or moreof the following characteristics: homogeneously erythematous color,prominent central clearing, target-like appearance, central vesicles or pustules, partially purpuric, and not scaly, unless topical corticosteroid creams have been applied or the rash is old and fading. An EM rash must be distinguished from: tick bite hypersensitivity reactions, insect or spider bites, contact dermatitis, bacterial cellulitis, and tinea. An interesting study in compared responses from physicians in endemic and nonendemic areas with regard to what percentage of EM rashes in their practices had central clearing. Physicians from endemic areas thought it only 19%, while those from nonendemic estimated 80%. The authors did not give a reason for the disparity; possibilities include strain variation or physician experience. The variable presentation of the EM rash, coupled with the fact that it does not manifest in 32% of patients, makes it unwise to rely on EM as the only manifestation of Lyme disease that has clinical diagnostic utility.
Physicians use pattern recognition as a common diagnostic heuristic. These cognitive “shortcuts,” when used properly, allow physicians to move quickly to the correct diagnosis. Pattern recognition transforms exposure, individual symptoms, and the course of illness into a unified diagnosis; it is why some physicians specifically see “Lyme disease” when colleagues see only a generalized “positive review of systems.” For physicians unfamiliar with the pattern of Lyme disease, serologic testing, combined with clinical data, offers the potential for reaching the correct diagnosis.
However, serology alone cannot confirm or deny presence of infection. In Lyme disease, there is no testing shortcut.
Furthermore, diagnostic criteria are situational. Clinical criteria are constructed to diagnose and treat ill patients. Research criteria are constructed to test a hypothesis in a uniform group of subjects; researchers have no duty to those excluded from the trial.

Henry
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Re: Why the Government is Suppressing the Lyme Disease Epide

Post by Henry » Fri 9 Jan 2015 14:59

dlf: So why couldn't Duncan have answered my question by listing some of the same symptoms noted by Maloney? Is it because his are different ? The point I was trying to make is that if one does not trust the results of diagnostic tests, then all that remains are the EM rash (which is considered to be diagnostic for Lyme disease) and symptoms. If that is the case, then which symptoms are most important in making an accurate and valid diagnosis of Lyme disease? That's all I am asking for heaven sake!!! Duncan's list may be different from Lorima's and others who care to volunteer their list of symptoms.

I tend to regard symptoms mainly as initial clues to the underlying nature of a medical problem. They are important in narrowing down the search as to what could be wrong -- or going wrong. However, since many are not unique to Lyme disease and often are associated with other medical conditions -- all of which must be treated differently to benefit from whatever therapy is to be used-- a physician must rely on other more objective data to make a final diagnosis. Now, what would that be in the case of Lyme disease? Keep in mind that a patient might have symptoms generally associated with Hashimoto's disease, a pituitary tumor, leukemia, ALS, MS, as well as Lyme disease. So, how does a physician justify treating for Lyme disease and not these other medical conditions based on symptoms alone? Here is where the "rubber meets the road" and a physician must be certain. It could be a matter of life and death. That's what I am trying to find out -- if anyone can tell me. The response ought to be better than, "It's Lyme disease. Trust me (and my "clinical judgement"). I know it when I see it". And then, after paying thousands of dollars, the patient is no better off than before ...................Alternatively, are many people who believe that they have Lyme disease self-diagnosed, in which case everything is up for grabs ? Does anyone believe that self-diagnosis is just as valid as a one made by a physician? To paraphrase Shakespeare, "A physician who treats himself has a fool for a patient". In other words, it is extremely important NOT to allow ones subjective feelings to dominate the process.

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