Lyme Disease Science Conversations:
Instagram Conversations

Conversations on Instagram with a leading Lyme disease expert, Dr. Daniel Cameron, about the latest discoveries and advancements in Lyme disease and associated illnesses.

Click on photos or videos below to view comments.

Are physicians lemon dropping LD patients? "Lemon-dropping" involves rejecting less promising patients, especially those who would use a lot of resources.

I have patients who are concerned that their doctor is lemon-dropping less promising Lyme disease patients, especially those who might use a lot of resources. "Lemon-dropping” goes against the Hippocratic Oath, says Jim Bailey, MD, director of the Center for Health System Improvement at the University of Tennessee Health Science Center, in Memphis in MedScape.1 "These practices go directly against the central tenet of the Hippocratic Oath, which says, 'Into whatever houses I enter, I will go for the benefit of the sick,'" he says.

Fortunately, there are still doctors who are not lemon-dropping Lyme disease patients.

Have you know a doctor who appears to be lemon-dropping Lyme disease patients? Please join the conversation in the comments below.

1. Are More Doctors Cherry-Picking and Lemon-Dropping Patients? February 17, 2017 From MedScape Internal Medicine. Available from https://www.medscape.com/viewarticle/874530 Last accessed 1/6/19. .
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#panspandas #doctors
#medical
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31 10

Shame about being unable to support oneself
Doctors in Sweden examined the shame about being unable to support oneself and one's family in individuals with medically unexplained symptoms (MUS) through patient narratives. “The participants’ inability to maintain their ordinary life and appearance evoked lack of self-confidence and feelings of lost identity and shame. The desire to work and earn money was emphasized, while shame about being unable to support oneself and one's family was expressed in the narratives.”1

I have Lyme disease patients who expressed shame about being unable to support themselves.

Of note, I have seen patients with Lyme disease who were initially presumed to suffer from MUS.

Have you expressed shame about being unable to support yourself? Please join the conversation in the comments

1. Liden E, Bjork-Bramberg E, Svensson S. The meaning of learning to live with medically unexplained symptoms as narrated by patients in primary care: a phenomenological-hermeneutic study. Int J Qual Stud Health Well-being. 2015;10:27191.
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#babesia #tick #Lyme
#fibromyalgia
#children #globallymealliance
#lymediseaseawareness
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#lymeawarenessmonth
#panspandas
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26 7

The types of Lyme disease presentations have increased dramatically over the past 40 years. Have you had one of these Lyme disease presentations?

1. 1. Lyme encephalopathy1
2. 2. Lyme neuropathy1
3. 3. Neuropsychiatric Lyme disease2
4. 4. Pediatric neuropsychiatric disorders - PANS3
5. 5. Lyme carditis.4
6. 6. Autonomic dysfunction - POTS5
7. 7. Post-treatment Lyme fatigue - Post Lyme disease6
8. 8. Neuropathic pain7
9. 9. Persistent symptoms after Lyme disease 8
10. 10. Concurrent Co-infections e.g. Babesia9

#LymeConversations

1. Logigian EL, Kaplan RF, Steere AC. Chronic neurologic manifestations of Lyme disease. N Engl J Med. 1990;323(21):1438-1444.
2. Fallon BA, Nields JA. Lyme disease: a neuropsychiatric illness. Am J Psychiatry. 1994;151(11):1571-1583.
3. Sigra S, Hesselmark E, Bejerot S. Treatment of PANDAS and PANS: a systematic review. Neurosci Biobehav Rev. 2018;86:51-65.
4. Muehlenbachs A, Bollweg BC, Schulz TJ, et al. Cardiac Tropism of Borrelia burgdorferi: An Autopsy Study of Sudden Cardiac Death Associated with Lyme Carditis. Am J Pathol. 2016.
5. Kanjwal K, Karabin B, Kanjwal Y, Grubb BP. Postural orthostatic tachycardia syndrome following Lyme disease. Cardiol J. 2011;18(1):63-66.
6. Krupp LB, Hyman LG, Grimson R, et al. Study and treatment of post Lyme disease (STOP-LD): a randomized double masked clinical trial. Neurology. 2003;60(12):1923-1930.
7. Simons LE. Fear of pain in children and adolescents with neuropathic pain and complex regional pain syndrome. Pain. 2016;157 Suppl 1:S90-97.
8. Klempner MS, Hu LT, Evans J, et al. Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease. N Engl J Med. 2001;345(2):85-92.
9. Krause PJ, Telford SR, 3rd, Spielman A, et al. Concurrent Lyme disease and babesiosis. Evidence for increased severity and duration of illness. Jama. 1996;275(21):1657-1660.

Photo by Jake Hills on Unsplash .
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Bad advise for Lyme disease patients

I hear bad advice every day in my practice.

Here are a few examples.

The two-tier test is positive in nearly all cases.

The spinal tap should be positive.

More than 3 weeks of antibiotics are not effective.

Chronic manifestations of Lyme disease do not exist.

Chronic manifestations of Lyme disease are nothing more than the aches and pains of daily living

Do you have any examples of bad advise for Lyme disease? Please join the conversation in the comments below.
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#lymedisease #chroniclyme
#babesia #tick #Lyme
#fibromyalgia
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32 4

Fatigue, anxiety and depression, body aches, disturbed sleep, mood swings, headaches and trouble concentrating…

Patients suffering from these chronic symptoms have seen multiple doctors before being diagnosed with Lyme disease.

How many doctors have you see before being diagnosed with Lyme disease? Please join the conversation in the comments below.
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#fibromyalgia
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38 7

Lyme disease patients need health care

Lyme disease can last for months to years.
Lyme disease patients need doctors who are experienced in treating Lyme disease.

Have you run into difficulties finding a doctor experienced in treating Lyme disease? Please join the conversation in the comments below.
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#fibromyalgia
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35 9

Lyme disease can be challenging to recognize in children.

Lyme disease may present as another common illness including the following.

Migraine
Fibromyalgia
Chronic fatigue
Synovitis
Central pain syndrome
POTS
PANS
ADHD
Insomnia

How was Lyme disease recognized in your child? Please join the conversation in the comments below.
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#babesia #tick #Lyme
#fibromyalgia
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A shattered opportunity for an ordinary life for a Lyme disease patient.

Doctors in Sweden described individuals with medically unexplained symptoms (MUS) dealing with a shattered opportunity for an ordinary life. “Learning to live with MUS seems to be about coming to terms with shattered opportunities for ordinary daily life. The condition evokes feelings of being changed as a person and loss of joie de vivre. It involves reflection on how life used to be, including both bad and good memories, in addition to hope for as well as fear of the future. Learning to live with MUS is a struggle to interpret symptoms and manage a daily life that is dominated by them. The struggle sometimes leads to new insights about who you are and life per se.”1

Joie de vivre is a French term for an exuberant enjoyment of life.

I have Lyme disease patients dealing with a shattered opportunity for an ordinary life.

I have patients who have improved if their MUS turned out to be Lyme disease.

Was your opportunity for an ordinary life shattered with Lyme disease?
Please join the conversation in the comments below.

1. Liden E, Bjork-Bramberg E, Svensson S. The meaning of learning to live with medically unexplained symptoms as narrated by patients in primary care: a phenomenological-hermeneutic study. Int J Qual Stud Health Well-being. 2015;10:27191.
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#lymedisease #chroniclyme
#babesia #tick #Lyme
#fibromyalgia
#children #globallymealliance
#lymediseaseawareness
#lymeconversations
#ILADS #chronicillness
#lymeawarenessmonth
#panspandas
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Problems with steroids for Bell’s palsy.

Bell’s palsy typically presents as paralysis or severe weakness of the facial muscle on one side of the face. Seventh nerve palsy from Lyme disease can look like Bell’s palsy at the bedside.

There is evidence that steroids are helpful for Bell’s palsy.

There is now evidence that steroids might be harmful if the Bell’s palsy turns out to be seventh nerve palsy from Lyme disease.

Six of 11 Lyme disease patients (54.5%) continued to suffer from facial nerve dysfunction an average of 13.1 months after treatment with a combination of steroids and antibiotics writes Wormser in the journal Diagnostic Microbiology and Infectious Disease.1

Do you know anyone who was prescribed steroids for Bell’s palsy who turned out to suffer from seventh nerve palsy from Lyme disease? Please join the conversation in the comments below.

1. Wormser GP, McKenna D, Scavarda C, Karmen C. Outcome of facial palsy from Lyme disease in prospectively followed patients who had received corticosteroids. Diagn Microbiol Infect Dis. 2018.
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24 2

Doctors should inform their Lyme disease patients about both sides of the debate.

Forty years after the discovery of Lyme disease, doctors are divided.

There are doctors who have concluded that chronic manifestations of Lyme disease do not exist, that the symptoms are nothing more than the aches and pains of daily living, that serologic tests are reliable, and that treatment is not effective.

There are other doctors who have concluded that chronic manifestations of Lyme disease exists, the symptoms can be severe, the serologic tests are not reliable enough to replace clinical judgment, and treatment can be effective.

There are evidence-based guidelines that support both positions.

I am the first author and supporter of the latter position.
I feel patients should be informed of both sides of the debate.

Were you informed of both sides of the debate? Please join the conversation with others in the comments below.
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70 11

Shifting the focus to a clinical diagnosis of Lyme disease.

Lyme disease was initially a clinical diagnosis described by Dr. Steere and colleagues in 1977.

There are doctors who shifted their focus from a clinical diagnosis to a CDC surveillance case definition consisting of an erythema migrans rash, Bell’s palsy, heart block, encephalitis, and Lyme arthritis.

There are also doctors who shifted their focus from a clinical diagnosis to a two tier serologic criteria consisting of 2 of 3 IgM western blot bands or 5 of 10 IgG western blot bands.

There are Lyme disease patients who do not meet either the CDC’s surveillance case definition or the two-tier serologic criteria.

These patients can only be diagnosed with Lyme disease using clinical judgment.

Have you know a doctor who is reluctant to diagnose Lyme disease using clinical judgment? Please join the conversation in the comments below.
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#babesia #tick #Lyme
#fibromyalgia
#children #globallymealliance
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#lymeawarenessmonth
#panspandas
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46 0

To know Lyme disease is to know medicine.

Sir William Osler, the father of American Medicine, once stated that to know syphilis is to know medicine.

Decades later, a tick harboring a wide range of human pathogens was discovered that would lead to a wide range of manifestations.1
Dr. Bransfield reflected on the challenges getting to know Lyme disease in an article titled Neuropsychiatric Lyme Borreliosis: An Overview with a Focus on a Specialty Psychiatrist's Clinical Practice.2 “He who knows Lyme borreliosis knows about medicine, neurology, psychiatry, immunology, psychoimmunology, neurochemistry, ecology, epidemiology, entomology, law, politics, and ethics.”2

Do you know medicine now that you know Lyme disease? Please join the conversation in the comments below.

1. Burgdorfer W, Barbour AG, Hayes SF, Benach JL, Grunwaldt E, Davis JP. Lyme disease-a tick-borne spirochetosis? Science. 1982;216(4552):1317-1319.
2. Bransfield RC. Neuropsychiatric Lyme Borreliosis: An Overview with a Focus on a Specialty Psychiatrist's Clinical Practice. Healthcare (Basel). 2018;6(3).
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58 6

Non-restorative sleep and chronic unremitting stress in Lyme disease.

Dr. Bransfield described non-restorative sleep and chronic unremitting stress in Lyme disease.1 “Chronic unremitting stress is often associated with hyperarousal and emotional symptoms such as depression, anxiety, depersonalization, mood swings and psychosis.” Treatment can help, writes Dr. Bransfield. “remediating these symptoms can improve immune functioning and resistance to infection which may reduce disease progression and contribute to recovery.“ “Successful psychiatric management can sometimes result in reduction of infection and successful reduction of infection can sometimes result in reducing psychiatric symptoms and reducing the need for psychotropics.” Have you had problems with non-restorative sleep or chronic unremitting stress in Lyme disease? Please join the conversation in the comment below.

1. Bransfield RC. Neuropsychiatric Lyme Borreliosis: An Overview with a Focus on a Specialty Psychiatrist's Clinical Practice. Healthcare (Basel). 2018;6(3).
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37 8

Some Lyme disease patients suffer from “Post Treatment Lyme disease Syndrome” in a Johns Hopkins University Study after a short course of antibiotics.

Their “PTLDS” patients suffered from severe fatigue, pain, cognitive complaints, and a loss of function.1
The Infectious Diseases Society of America (IDSA), American Academy of Neurology (AAN), and American College of Rheumatology (ACR) treatment proposed guidelines oppose additional treatment.

Some doctors are not opposed to treating patients with “PTLDS.” Should “PTLDS” patients seek another opinion?
Tell us what you believe in the comments below.
Note: I have opposed the term “PTLDS” until there is a reliable test to rule out a persistent infection. .
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38 6

Disagreements within families over Lyme disease treatment.

There is disagreement within the medical community over Lyme disease treatment.

I have seen the same disagreement within families over Lyme disease treatment.

Some family members have concluded that chronic manifestations of Lyme disease do not exist, that serologic tests are reliable, and that treatment is not effective.

There are other family members who have concluded that chronic manifestations of Lyme disease exists, the symptoms can be severe, the serologic tests are not reliable enough to replace clinical judgment, and treatment can be effective.

The disagreements within the family over treatment can be overwhelming for someone with Lyme disease.

I find it helpful to discuss disagreements within families over Lyme disease treatment.

Have you seen disagreements in the family over Lyme disease treatment? Please join the conversation in the comments below.
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42 9

Countries have different approaches to the diagnosis and treatment of Lyme disease.

Do you know anyone who contracted Lyme disease while traveling internationally? What was your experience?
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36 8

Has your child ever been diagnosed with one condition only be find out later the cause was Lyme disease? You're not alone.
What was your child diagnosed with before Lyme disease was recognized?

Photo by Pixabay from Pexels
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39 9

There are too many Lyme disease patients that fail a single 21-day course of antibiotics. I have worked with doctors who do not take failure for an answer. Did your doctor take another path forward?
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77 4

Some doctors are reluctant to diagnose Lyme disease without a positive test. Other doctors use clinical judgment to treat Lyme disease patients if the tests are negative.
Some Lyme disease patients are not informed of opposing views on the diagnosis of Lyme disease for months to years. Should doctors share opposing views on Lyme disease with their patients?
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#babesia #tick #Lyme
#fibromyalgia
#children #globallymealliance
#lymediseaseawareness
#lymeconversations
#ILADS #chronicillness
#lymeawarenessmonth
#panspandas

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