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.

Many Lyme disease symptoms aren't obvious to the naked eye, which can make it difficult to recognize when suffering from Lyme disease.

Do you know anyone who is suffering from Lyme disease without knowing it?
.
.
.
.
#lymedisease #chroniclyme
#babesia #tick #Lyme
#fibromyalgia
#children #globallymealliance
#lymediseaseawareness
#lymeconversations
#ILADS #chronicillness
#lymeawarenessmonth
#panspandas #doctors
#medical
...

120 4

How long does it take for research evidence to reach clinical practice? “It takes an average of 17 years for research evidence to reach clinical practice” writes Morain and colleagues in the New England Journal of Medicine.
These authors were discussing the implications of Zika for fetal development. “we don’t have the luxury of waiting 17 years for practice to change. If we want to protect the health of current and future populations, there is no time for delay.” I have the same feeling for Lyme disease patients in my practice. Do you agree.

Morain SR, Wootton SH, Catherine C A Devastating Delay - Zika and the Implementation Gap. N Engl J Med , 377 (16), 1505-1507 2017 Oct 19
.
.
.
.
#lymedisease #chroniclyme
#babesia #tick #Lyme
#fibromyalgia
#children #globallymealliance
#lymediseaseawareness
#lymeconversations
#ILADS #chronicillness
#lymeawarenessmonth
#panspandas #doctors
#medical
...

38 7

“One mother, a professional who had had to leave her job to care for her ill daughter, summarized the financial costs (I would estimate my lost earnings to be in the order of $30,000–$40,000).” writes Gaudet from the Department of Psychology, Mount Allison University, Canada in the journal Healthcare. 1

The 23 parents of children and adolescents with Lyme disease were recruited through support groups and social media posts.
The medical costs were also high. “Add to this the extraordinary costs incurred over the years in an effort to find out what was wrong and to address the many symptoms ( . . . ) to be in the order of $20,000–$25,000).”writes Gaudet.

What were the financial costs of Lyme disease for your family?

Gaudet, E. M., et al. (2019). "Parenting When Children Have Lyme Disease: Fear, Frustration, Advocacy." Healthcare (Basel) 7(3).
.
.
.
#lymedisease #chroniclyme
#babesia #tick #Lyme
#fibromyalgia
#children #globallymealliance
#lymediseaseawareness
#lymeconversations
#ILADS #chronicillness
#lymeawarenessmonth
#panspandas #doctors
#medical
...

13 7

“Evidenced Based Medicine (EBM) integrates clinical experience and patient values with the best available research evidence. “1

Lyme disease laboratory tests are not as reliable as I would like.

Lyme disease clinical trials are flawed.

I have had to rely on clinical expertise and patient values for these Lyme disease patients.

Did your doctor rely on clinical expertise and patient values in treating your Lyme disease?
.
.
.
#lymedisease #chroniclyme
#babesia #tick #Lyme
#fibromyalgia
#children #globallymealliance
#lymediseaseawareness
#lymeconversations
#ILADS #chronicillness
#lymeawarenessmonth
#panspandas #doctors
#medical
...

33 1

When diagnosed with Lyme disease, some people fear the only course of action will be intravenous antibiotics.

Many people with Lyme disease do well with oral antibiotics.
Do you know anyone who is afraid to start treatment for Lyme disease?
.
.
.
#lymedisease #chroniclyme
#babesia #tick #Lyme
#fibromyalgia
#children #globallymealliance
#lymediseaseawareness
#lymeconversations
#ILADS #chronicillness
#lymeawarenessmonth
#panspandas #doctors
#medical
...

61 20

The quality of life was poor for Lyme disease patients in three NIH sponsored trials and a Norwegian trial.
I have Lyme disease patients who are experiencing profound misery.

Have you experienced profound misery from Lyme disease? .
.
.
#lymedisease #chroniclyme
#babesia #tick #Lyme
#fibromyalgia
#children #globallymealliance
#lymediseaseawareness
#lymeconversations
#ILADS #chronicillness
#lymeawarenessmonth
#panspandas #doctors
#medical
...

79 30

“I am always encouraging people keep that search for joy and hope” ...

76 13

I see Lyme disease patients who were initially diagnosed. The list includes fibromyalgia, chronic fatigue, migraines, multiple sclerosis, irritable bowel disorder, anxiety, and depression.

How long did it take you to get a correct diagnosis of Lyme disease if you were initially misdiagnosed?
.
.
.
#lymedisease #chroniclyme
#babesia #tick #Lyme
#fibromyalgia
#children #globallymealliance
#lymediseaseawareness
#lymeconversations
#ILADS #chronicillness
#lymeawarenessmonth
#panspandas #doctors
#medical
...

57 59

“Fear of pain in children and adolescents with neuropathic pain and CRPS [complex regional pain syndrome].” was addressed by Laura E. Simons in the 2016 journal Pain.1 “Pain-related fear is associated with high levels of disability, depressive symptoms, and school impairment” writes Simons in a review in the journal Pain.1

Pain-related fear and associated behavioral avoidance have been identified in patients with low back, neuropathic, upper extremity, abdominal, fibromyalgia and headache pain irrespective of pain intensity writes Simons.1

I have seen a fear of pain in adolescents with Lyme disease.

I have seen this fear clear if their Lyme disease resolves.

Have you seen a fear of pain in adolescents with Lyme disease? Please join the conversation in the comments below.

You can read a full text of the article by Laura E. Simons in the journal Pain. Copy and paste. http://bit.ly/2ZSQeEC
1. Simons LE. Fear of pain in children and adolescents with neuropathic pain and complex regional pain syndrome. Pain. 2016;157 Suppl 1:S90-97.
.
.
.
#lymedisease #chroniclyme
#babesia #tick #Lyme
#fibromyalgia
#children #globallymealliance
#lymediseaseawareness
#lymeconversations
#ILADS #chronicillness
#lymeawarenessmonth
#panspandas #doctors
#medical
...

51 2

Warmest wishes for a healthy and happy 2020!
.
.
.
#lymedisease #chroniclyme
#babesia #tick #Lyme
#fibromyalgia
#children #globallymealliance
#lymediseaseawareness
#lymeconversations
#ILADS #chronicillness
#lymeawarenessmonth
#panspandas #doctors
#medical
...

31 0

A doctor’s role in recognizing Lyme disease.

Doctors have been taught to recognize the early manifestations of Lyme disease, including an erythema migrans rash, 7th nerve palsy, heart block, and Lyme arthritis.

Doctors have often not been taught to recognize other manifestations of Lyme disease, including:

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

Did your doctor recognize these other manifestations of Lyme disease?

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.
.
.
#lymedisease #chroniclyme
#babesia #tick #Lyme
#fibromyalgia
#children #globallymealliance
#lymediseas
...

29 11

You can have Lyme disease and not recognize it.
Do you know anyone who has not recognized their Lyme disease?.
.
.
#lymedisease #chroniclyme
#babesia #tick #Lyme
#fibromyalgia
#children #globallymealliance
#lymediseaseawareness
#lymeconversations
#ILADS #chronicillness
#lymeawarenessmonth
#panspandas #doctors
#medical
...

101 6

What is on your Lyme disease wish list?
.
.
#lymedisease #chroniclyme
#babesia #tick #Lyme
#fibromyalgia
#children #globallymealliance
#lymediseaseawareness
#lymeconversations
#ILADS #chronicillness
#lymeawarenessmonth
#panspandas #doctors
#medical
...

35 18

Are you aware of your Lyme disease treatment options?

Talk to your doctor again or seek a second opinion.
.
.
#lymedisease #chroniclyme
#babesia #tick #Lyme
#fibromyalgia
#children #globallymealliance
#lymediseaseawareness
#lymeconversations
#ILADS #chronicillness
#lymeawarenessmonth
#panspandas #doctors
#medical
...

40 4

The latest Lyme disease guidelines proposed by the IDSA, AAN, and ACR are surprisingly simple. The proposed list includes 1) a single 200 mg dose of doxycycline for a tick bite, 2) a 21-day course of doxycycline, and 3) retreatment for only Lyme arthritis.

I find their proposed guidelines are too simple to prevent complications in my patients. Post Treatment Lyme Disease Syndrome (PTLDS) is the latest complication for Lyme disease patients treated using their proposed guidelines.

Have Lyme disease guidelines been oversimplified?
.
.
#lymedisease #chroniclyme
#babesia #tick #Lyme
#fibromyalgia
#children #globallymealliance
#lymediseaseawareness
#lymeconversations
#ILADS #chronicillness
#lymeawarenessmonth
#panspandas #doctors
#medical
...

24 6

Lyme disease: To Screen or Not?

In a perfect world, every Lyme disease will present with an erythema migrans rash, Bell’s palsy, or swollen knee with a positive blood test. But in the real world, patients can present with other manifestations of Lyme disease without a positive test. I have to clinical judgment to screen for Lyme disease and co-infections if the tests are negative.

I find other manifestations of Lyme disease by screening my patients.
1. Lyme encephalopathy
2. Lyme neuropathy
3. Neuropsychiatric Lyme disease
4. Pediatric neuropsychiatric disorders - PANS
5. Lyme carditis.
6. Autonomic dysfunction - POTS
7. Post-treatment Lyme fatigue - Post Lyme disease
8. Neuropathic pain
9. Persistent symptoms after Lyme disease
10. Concurrent Co-infections

Have you been screened for these manifestations of Lyme disease?
.
.
#lymedisease #chroniclyme
#babesia #tick #Lyme
#fibromyalgia
#children #globallymealliance
#lymediseaseawareness
#lymeconversations
#ILADS #chronicillness
#lymeawarenessmonth
#panspandas #doctors
#medical
...

38 3

The truth about Lyme disease is worth it.

Not everyone sees a tick bite.

The rash may be atypical or absent.

The serologic tests for Lyme disease may be negative.

There are chronic manifestations of Lyme disease.
A single three-week course of antibiotics Lyme disease may fail.

Additional antibiotics may be helpful.

The truth about Lyme disease is helpful.

Have you had problems finding the truth about Lyme disease? .
.
#lymedisease #chroniclyme
#babesia #tick #Lyme
#fibromyalgia
#children #globallymealliance
#lymediseaseawareness
#lymeconversations
#ILADS #chronicillness
#lymeawarenessmonth
#panspandas #doctors
#medical
...

73 8

Johns Hopkins University of Medicine researchers described six Lyme disease patients who suffered from severe fatigue, pain, cognitive complaints, and a loss of function. These patients remained ill at one year follow-up despite a three week course of antibiotics for early disease.1
They were not retreated. Instead, they were told they suffered from “Post Treatment Lyme disease syndrome” or “PTLDS”. Do you think physicians are too quick to rush to judgment when they oppose more than three weeks of antibiotics for Lyme disease?

1. Rebman AW, Bechtold KT, Yang T, et al. The Clinical, Symptom, and Quality-of-Life Characterization of a Well-Defined Group of Patients with Posttreatment Lyme Disease Syndrome. Front Med (Lausanne). 2017;4:224.
.
.
#lymedisease #chroniclyme
#babesia #tick #Lyme
#fibromyalgia
#children #globallymealliance
#lymediseaseawareness
#lymeconversations
#ILADS #chronicillness
#lymeawarenessmonth
#panspandas #doctors
#medical
...

84 15

.
.
#lymedisease #chroniclyme
#babesia #tick #Lyme
#fibromyalgia
#children #globallymealliance
#lymediseaseawareness
#lymeconversations
#ILADS #chronicillness
#lymeawarenessmonth
#panspandas #doctors
#medical
...

62 13

Lyme disease is a serious problem for some families.

Some families are not convinced Lyme disease is a problem.

At least not until someone in the family become ill with Lyme disease.

Have you ever had to fight to convince someone in the family that Lyme disease is a problem? .
.
#lymedisease #chroniclyme
#babesia #tick #Lyme
#fibromyalgia
#children #globallymealliance
#lymediseaseawareness
#lymeconversations
#ILADS #chronicillness
#lymeawarenessmonth
#panspandas #doctors
#medical
...

84 15