Misdiagnosis of Chronic Lyme Disease

Topics with information and discussion about published studies related to Lyme disease and other tick-borne diseases.
Henry
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Joined: Thu 10 Nov 2011 18:49

Misdiagnosis of Chronic Lyme Disease

Post by Henry » Tue 4 Nov 2014 14:56

Caution: LLMDs at work.................

http://archinte.jamanetwork.com/article ... id=1921752

lou
Posts: 215
Joined: Fri 2 Nov 2007 0:41

Re: Misdiagnosis of Chronic Lyme Disease

Post by lou » Tue 4 Nov 2014 14:57

Not going to bother reading this. Can't you find some other forum to troll in?

dlf
Posts: 294
Joined: Sun 7 Apr 2013 15:36

Re: Misdiagnosis of Chronic Lyme Disease

Post by dlf » Tue 4 Nov 2014 16:50

Thanks for posting this Henry, I really needed a "morning smile" today.

You have to love the hubris of JAMA (or maybe the authors) to title this opinion article as a "Research Letter". Particularly when they state right in it that, "Institutional review board approval was not obtained for this case series because it did not meet the regulatory definition of research."

Any chance you could post a little more information about case 3, since most of us can't afford to buy the article to see the details?

My take-away from this article is that it demonstrates the complete lack of compassion, diagnostic skills and acumen in the medical profession generally. Unless there are some details that point in any other direction contained on later pages, what it shows is that a patient went from physician to physician for 12 years with considerable pain and debility and not one doctor along the way was bright enough to figure out what the root cause of his problems was. Patient 2 similarly went for 4 years with complaints that all his doctors ignored until he was at stage IV Hodgkin lymphoma. Surely you can't believe that those patients put up with their maladies without seeing a small army of physicians before they found a doctor who listened to their complaints and tried to do something to help.

Patient 3, likely did have Lyme disease, but since his case is also included in this opinion piece, he also must have had something else as well. His real problem likely stemmed mostly from not being evaluated by an LLMD. His treatment regimen looks like a typical IDSA protocol that got extended because the first round had no effect. Really, a 100-mg dose of doxycycline BID for 28 days, repeated twice for another 21 days each time doesn't sound like anything that an LLMD would prescribe.

Henry
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Joined: Thu 10 Nov 2011 18:49

Re: Misdiagnosis of Chronic Lyme Disease

Post by Henry » Tue 4 Nov 2014 18:43

It's no consolation to find a physician who will listen to what the patient has to say about his/her symptoms, and then make a wrong diagnosis that eventually results in great harm -- both physically and financially. Some might say, "Well, at least the physician took the time to listen to the patient". But, what good was accomplished in these instances? A second opinion from a board certified internist might have been more in order. It proves that you just can not diagnose chronic Lyme disease based on symptoms alone, in the absence of an objective validated laboratory test. Those who ignore such logic do so at their own peril.

duncan
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Joined: Wed 5 Sep 2012 18:48

Re: Misdiagnosis of Chronic Lyme Disease

Post by duncan » Tue 4 Nov 2014 19:40

Henry: "It proves that you just cannot diagnose chronic Lyme disease based on symptoms alone, in the absence of an objective validated laboratory test."

And as we all know, you just cannot diagnose chronic Lyme disease or even late stage Lyme disease despite symptom severity, even WITH the support of an objective validated laboratory test, after you have received any kind of antibiotic treatment for said case. Because, of course, at that point politics dictate the diagnosis must read PTLDS.

Those who ignore such logic...well, actually, there isn't much sound logic to that, is there?

Henry
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Joined: Thu 10 Nov 2011 18:49

Re: Misdiagnosis of Chronic Lyme Disease

Post by Henry » Tue 4 Nov 2014 22:07

It sure beats "colored beads" and magic.

duncan
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Re: Misdiagnosis of Chronic Lyme Disease

Post by duncan » Tue 4 Nov 2014 22:20

Not really.

RitaA
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Joined: Thu 1 Jul 2010 8:33

Re: Misdiagnosis of Chronic Lyme Disease

Post by RitaA » Wed 5 Nov 2014 3:53

There are a few more details about the third patient in this Medscape article. For anyone who isn’t already a member of Medscape, membership is free.

http://www.medscape.com/viewarticle/834312?src=rss
Lyme Misdiagnosis Can Divert Patients From Correct Treatment

Larry Hand

November 04, 2014

[snip]

They present three cases in which a misdiagnosis of chronic Lyme disease led to delayed diagnosis of the real problem and harm to the individuals.

One man in his 30s had a 12-year history of joint pain and memory loss and 2 years of paresthesias in both hands, but negative serologic results for Lyme disease. Despite treatment meant for Lyme disease, his symptoms worsened and he developed syncope and visual field deficit. A physician later determined that he had a pituitary tumor and elevated insulin-like growth factor consistent with acromegaly. Only a portion of the tumor could be removed, and the patient was left with permanent facial changes, cardiomyopathy, joint pain, and obstructive sleep apnea.

Another man in his late 30s had a 4-year history of fatigue, abdominal pain, and loose stools and negative serologic results for Lyme disease, but was prescribed antibiotics. He later discontinued that treatment, and a gastroenterologist and oncologist found from a gastric biopsy that he had stage IV mucosa-associated lymphoid tissue lymphoma. A mesenteric lymph node biopsy led to diagnosis of stage IV classic Hodgkin lymphoma. The patient died 2 years later from complications.

A third man, in his late 50s, had a 2-week history of fatigue and a 3-day history of fever, headache, and myalgias, but no known tick bite. However, he did have positive serum enzyme immunoassay results for Lyme disease. Soon, he had an erythematous rash that resolved, but malaise and fatigue continued. He had an 18-pack-year history of smoking, and a clinician found a nodular mass in the right upper lobe. He turned out to have stage I non-small cell adenocarcinoma, which clinicians successfully removed.

"Patients 1 and 2 had no evidence of ever having Lyme disease. Patient 3 likely had true Borrelia burgdorferi infection for which antibiotic therapy was appropriate; however, subsequent symptoms were incorrectly attributed to persistent infection," the CDC authors write.

They conclude, "We are not suggesting that every patient with nonspecific symptoms, such as fatigue, joint pain, or abdominal pain, should be aggressively evaluated for cancer. Rather, we present these cases to demonstrate delays in diagnosis that come from assuming that patients have chronic Lyme disease."

RitaA
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Joined: Thu 1 Jul 2010 8:33

Re: Misdiagnosis of Chronic Lyme Disease

Post by RitaA » Wed 5 Nov 2014 4:30

There's even more about the third patient here:

http://www.medpagetoday.com/Blogs/IvanToday/48401
Blogs

That's Not Chronic Lyme, It's Cancer

Published: Nov 4, 2014 | Updated: Nov 4, 2014

By Ivan Oransky MD, Global Editorial Director, MedPage Today

Regular readers of MedPage Today will know that there are few issues as bitterly contentious as what we have called the "much-disputed notion of chronic Lyme disease." That debate even earned the attention of Sen. Richard Blumenthal (D-Conn.) when he was state attorney general.

Now, a set of three case reports in JAMA Internal Medicine suggests that some cases of the alleged condition are actually cancers. One turned out to be a pituitary tumor, another -- in a man who lived in an area where Lyme disease was quite rare -- a stage IV mucosa-associated lymphoid tissue lymphoma, and a third was a lung tumor.

The Center for Investigative Reporting spoke to John Burns, the 65-year-old man in the third case. "I'm probably the only person in the world who will say he is happy he got Lyme disease," Burns, who lives outside of Albany, N.Y., told reporter Beth Daley. "That's how they found the cancer early."

Burns says he is doing just fine now.
And it's not only cancers that doctors may miss, says study co-author Christina Nelson, MD, of the CDC.

"We have heard of cases of ALS (amyotrophic lateral sclerosis), MS (multiple sclerosis), and lupus and various other conditions that were misdiagnosed," Nelson told The Center for Investigative Reporting.

As the authors conclude: "We are not suggesting that every patient with nonspecific symptoms, such as fatigue, joint pain, or abdominal pain, should be aggressively evaluated for cancer. Rather, we present these cases to demonstrate delays in diagnosis that come from assuming that patients have chronic Lyme disease."
It's impossible to know exactly how many people are suffering because of a missed (or at least delayed) diagnosis of Lyme disease after initially being misdiagnosed with (and often treated for) MS, lupus, etc. This doesn't negate the fact that some people may indeed be misdiagnosed with Lyme disease. Doctors can (and do) make mistakes -- mostly because they are fallible human beings. This applies to ALL doctors -- not just those who specialize in the treatment of Lyme disease.

RitaA
Posts: 2768
Joined: Thu 1 Jul 2010 8:33

Re: Misdiagnosis of Chronic Lyme Disease

Post by RitaA » Wed 5 Nov 2014 4:43

Here's the Beth Daley article mentioned in the MedPage Today blog:

http://necir.org/2014/11/03/study-finds ... d-cancers/
Study finds cancer diagnoses delayed because of chronic Lyme misdiagnosis

By: Beth Daley | November 3, 2014

John Burns wasn’t getting better.

Diagnosed with Lyme disease with a federally approved test near his home in Albany, N.Y. six years ago, he was treated with several courses of antibiotics. Seven months later, he was still suffering from a crippling, overwhelming fatigue.

Worried he had developed a chronic illness from the tick-borne bacteria, he saw an infectious disease specialist and received a far different diagnosis: Early stage lung cancer.

“I’m probably the only person in the world who will say he is happy he got Lyme disease,’’ said Burns, 65, a heating, ventilation and air conditioning technician. “That’s how they found the cancer early.”

[snip]
There's more to read by clicking on the link.

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