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.

Misophonia: a negative emotional reaction and dislike to specific sound
Scientists have coined the name Misophonia for patients with a negative emotional reaction and dislike to a specific sound. “Misophonia is a condition where patients experience a negative emotional reaction and dislike (e.g., anxiety, agitation, and annoyance) to specific sounds (e.g., ballpoint pen clicking (repeatedly), tapping, typing, chewing, breathing, swallowing, tapping foot, etc.)” writes Palumbo1 in his review of Jastreboff’s work.2
Scientists have considered the nervous system as the cause. “the limbic and autonomic nervous systems are in a heightened state of excitation and thus react abnormally to normal auditory input.” writes Palumbo.

I have seen Lyme disease patients with a negative emotional reaction and dislike to a specific sound. Could we learn from the scientists who study Misophonia?

Have you suffered from a negative emotional reaction and dislike to specific sound? Please join the conversation in the comments below.

1. Palumbo DB, Alsalman O, De Ridder D, Song JJ, Vanneste S. Misophonia and Potential Underlying Mechanisms: A Perspective. Front Psychol. 2018;9:953.
2. Jastreboff PJ, Jastreboff MM. Tinnitus retraining therapy for patients with tinnitus and decreased sound tolerance. Otolaryngol Clin North Am. 2003;36(2):321-336.
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Medically unexplained symptoms (MUS) or functional disorders refer to “conditions where the patient complains of physical symptoms that cause excessive worry or discomfort or lead the patient to seek treatment, but for which no adequate organ pathology or patho-physiological basis can be found”1 writes Sowinska from the journal BMC Family Practice.

The authors described the narratives of 18 participants with MUS.

The authors identified three features of their patients.

1. 1. “the 'chaotic' structure of their illness narratives”
2. 2. “concern that symptoms may be 'all in the mind'”
3. 3. “and their status as 'medical orphans'.” “All the patients acknowledge that diagnosis is difficult and accept that a medical explanation will invariably be possible.” added Sowińska

I have seen Lyme disease patients with similar features.

I would look for Lyme disease in their MUS patients.

1. Sowinska A, Czachowski S. Patients' experiences of living with medically unexplained symptoms (MUS): a qualitative study. BMC Fam Pract. 2018;19(1):23. .
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#babesia #tick #Lyme
#fibromyalgia
#children #globallymealliance
#lymediseaseawareness
#lymeconversations
#ILADS #chronicillness
#lymeawarenessmonth
#panspandas #doctors
#medical
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Have you found it difficult to find a doctor experienced in treating Lyme disease?
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#babesia #tick #Lyme
#fibromyalgia
#children #globallymealliance
#lymediseaseawareness
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#ILADS #chronicillness
#lymeawarenessmonth
#panspandas #doctors
#medical

Photo by Jake Noren on Unsplash
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Some Lyme disease patients have lost their trust in doctors.
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#babesia #tick #Lyme
#fibromyalgia
#children #globallymealliance
#lymediseaseawareness
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#lymeawarenessmonth
#panspandas #doctors
#medical

Photo by Jake Noren on Unsplash
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Dr. Bransfield described suicidal feelings in Lyme disease patients.1
If you or someone you know with Lyme disease is struggling with thoughts of suicide, talk to your doctor or reach out to the National Suicide Prevention Lifeline '1-800-273-TALK (8255)' or https://suicidepreventionlifeline.org/
Have you or someone you know with Lyme disease had suicidal feeling? .
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#lymedisease #chroniclyme
#babesia #tick #Lyme
#fibromyalgia
#children #globallymealliance
#lymediseaseawareness
#lymeconversations
#ILADS #chronicillness
#lymeawarenessmonth
#panspandas #doctors
#medical
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Are you sick and tired of being sick and tired of Lyme disease.

The expression “I’m sick and tired of being sick and tired.” was coined by Fannie Lou Hamer, an American voting rights activist, civil rights leader, and philanthropist according to blackdoctor.org.1
I have Lyme disease patients who are sick and tired of being sick and tired.

Have you found yourself sick and tired of being sick and tired of Lyme disease? Please join the conversation in the comments below.
1. Fannie Lou Hamer: Putting An End To Being ‘Sick & Tired’ https://blackdoctor.org/485190/fannie-lou-hamer-did-something-about-being-sick-tired/ Last accessed January 26, 2019.
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#lymedisease #chroniclyme
#babesia #tick #Lyme
#fibromyalgia
#children #globallymealliance
#lymediseaseawareness
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#ILADS #chronicillness
#lymeawarenessmonth
#panspandas #doctors
#medical
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I am back from attending ILADS’s Scientific Conference in Boston. The program was the best ever. .
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#fibromyalgia
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I was pleased that the ILADEF honored Dr. Bernard Raxlen with its Pioneer in Lyme Award.
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#babesia #tick #Lyme
#fibromyalgia
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#panspandas #doctors
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Ending “PTLDS”: How Do We Get There From Here?
Dr. Wormser and colleagues proposed the term “Post Treatment Lyme Disease Syndrome” or (PTLDS)” for Lyme disease patients who remain ill after 21 days of antibiotic treatment. You can find their proposal in the 2006 IDSA guidelines.1

A Johns Hopkins study confirmed the existence and severity of “PTLDS” in Lyme disease patients after 3 weeks of treatment with doxycycline.
I do not use the term “PTLDS.” The term implies that there is a test to prove a tick-borne infection has cleared. Yet, there is no test to prove an infection has cleared.
I remain concerned that a doctor may not look for a persistent infection once their patient has been diagnosed with PTLDS.

Have you known someone who has been diagnosed with “PTLDS”? Please join the conversation with others in the comments below.

1. Wormser GP, Dattwyler RJ, Shapiro ED, et al. The clinical assessment, treatment, and prevention of lyme disease, human granulocytic anaplasmosis, and babesiosis: clinical practice guidelines by the Infectious Diseases Society of America. Clin Infect Dis. 2006;43(9):1089-1134.
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#lymedisease #chroniclyme
#babesia #tick #Lyme
#fibromyalgia
#children #globallymealliance
#lymediseaseawareness
#lymeconversations
#ILADS #chronicillness
#lymeawarenessmonth
#panspandas #doctors
#medical
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"An apple a day" may "keep the doctor away," but a one time 200 dose of doxycycline for a tick bite may not “keep Lyme away.” The IDSA treatment guidelines advised a one-time 200 mg dose of doxycycline for a tick bite.1

The ILADS treatment guidelines outlined their reasons for opposing a one-time 200 mg dose of doxycycline for a tick bite.2

Do you know anyone who developed Lyme disease despite a one-time 200 mg dose of doxycycline for a tick bite.
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#lymedisease #chroniclyme
#babesia #tick #Lyme
#fibromyalgia
#children #globallymealliance
#lymediseaseawareness
#lymeconversations
#ILADS #chronicillness
#lymeawarenessmonth
#panspandas #doctors
#medical

1. . Wormser GP, Dattwyler RJ, Shapiro ED, Halperin JJ, Steere AC, Klempner MS, Krause PJ, Bakken JS, Strle F, Stanek G, Bockenstedt L, Fish D, Dumler JS, Nadelman RB. The clinical assessment, treatment, and prevention of lyme disease, human granulocytic anaplasmosis, and babesiosis: clinical practice guidelines by the Infectious Diseases Society of America. Clin Infect Dis. 2006 Nov 1;43(9):1089-134. Epub 2006 Oct 2. Erratum in: Clin Infect Dis. 2007

1. Daniel J Cameron, Lorraine B Johnson, Elizabeth L Maloney. Evidence assessments and guideline recommendations in Lyme disease: the clinical management of known tick bites, erythema migrans rashes and persistent disease. Expert Rev Anti Infect Ther. 2014 Sep; 12(9): 1103–1135.
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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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#lymedisease #chroniclyme
#babesia #tick #Lyme
#fibromyalgia
#children #globallymealliance
#lymediseaseawareness
#lymeconversations
#ILADS #chronicillness
#lymeawarenessmonth
#panspandas #doctors
#medical
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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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#lymedisease #chroniclyme
#babesia #tick #Lyme
#fibromyalgia
#children #globallymealliance
#lymediseaseawareness
#lymeconversations
#ILADS #chronicillness
#lymeawarenessmonth
#panspandas
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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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#lymedisease #chroniclyme
#babesia #tick #Lyme
#fibromyalgia
#children #globallymealliance
#lymediseaseawareness
#lymeconversations
#ILADS #chronicillness
#lymeawarenessmonth
#panspandas
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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
#children #globallymealliance
#lymediseaseawareness
#lymeconversations
#ILADS #chronicillness
#lymeawarenessmonth
#panspandas
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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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#lymedisease #chroniclyme
#babesia #tick #Lyme
#fibromyalgia
#children #globallymealliance
#lymediseaseawareness
#lymeconversations
#ILADS #chronicillness
#lymeawarenessmonth
#panspandas
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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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#lymedisease #chroniclyme
#babesia #tick #Lyme
#fibromyalgia
#children #globallymealliance
#lymediseaseawareness
#lymeconversations
#ILADS #chronicillness
#lymeawarenessmonth
#panspandas
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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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#lymedisease #chroniclyme
#babesia #tick #Lyme
#fibromyalgia
#children #globallymealliance
#lymediseaseawareness
#lymeconversations
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#lymeawarenessmonth
#panspandas
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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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#lymedisease #chroniclyme
#babesia #tick #Lyme
#fibromyalgia
#children #globallymealliance
#lymediseaseawareness
#lymeconversations
#ILADS #chronicillness
#lymeawarenessmonth
#panspandas
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