Lyme Disease Science Conversations:
Facebook Conversations

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

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. 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. #LymeConversations

1. Fannie Lou Hamer: Putting An End To Being ‘Sick & Tired’ blackdoctor.org/485190/fannie-lou-hamer-did-something-about-being-sick-tired/ Last accessed January 26, 2019.
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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. 1I 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.   #LymeConversations1.  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.

 

Comment on Facebook

I have had to address these feeling in my practice.

Yes I'm sick and tired of being sick and tired. <3

Yes! Every now and then I get depressed as it just seems never ending. My kid is growing older, my parents are aging, my friends have moved on, and I’m still stuck. Enough already!

Sick and tired ! Diagnosis after diagnosis, ineffective treatments, and medical bills just keep coming . I'm lucky if I have a few good days. My poor children are afraid for me . A child should not have to worry about such things. We need accurate testing and effective treatments. I am developing more and more autoimmune diseases from years of untreated Lyme.

36 years. Enough.

Im beyond sick and tired.

Sick and tired of being sick and tired for over 20 years.

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Many people with Lyme disease do well with oral antibiotics. Do you know anyone who is afraid to start treatment for Lyme disease?

#LymeConversations

Photo by rawpixel.com from Pexels
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Many people with Lyme disease do well with oral antibiotics.  Do you know anyone who is afraid to start treatment for Lyme disease?#LymeConversationsPhoto by rawpixel.com from Pexels

 

Comment on Facebook

Feel free to share this question with a friend who might be afraid of treatment for Lyme disease.

Mickie Smith Stacey Have MTHFR times 2 so detoxing was dramatically decreased. Did oral glutathione plus weekly IV glutathione for several years. Then learned that coffee enemas open the glutathione pathways so now do them 2/week. Feeling so much better in many ways! Sound awful but they are not...feel so much better after! And so many other good changes!

Thank you and God Bless you Dr. Cameron. Because of you my beautiful, intelligent, kind daughter is with us today. I love you and thank you to the bottom of my soul. I am forever indebted to you.

No but I’m wondering why they abx aren’t really working after this long... there’s obviously still missing pieces

To those who are suffering my thoughts and prayers are with all of you. It’s a long, horrible, frightening recovery. It definitely gets worse before it gets better. I watched with horror and fear with the long journey my daughter faced alone. I supported her every step of the way but she had to walk it alone. She was diagnosed with everything under the sun including “ a form of Lupus “ from the best medical facilities on the east coast. Because of her intelligence to search out and find Dr. Cameron she is well on her way to recovery. It is a long frightening road. Stay the course and Dr. Cameron I will always love you and you will always hold a special place in my heart. You gave me my daughter back. To those currently suffering, I am sorry may God be with you still pray for a speedy recovery. It is a long road. I pray for education in medical professions, our Legislators and our insurance companies to recognize this is a real severe illness that needs attention moo!

Picc line Rochephin was a game changer for me. Granted, supplements and change of diet helped this along incl hyperbaric chamber.

Antibiotics only helped me temporarily and I built up an intolerance to 1/2 dozen of them. I've been misdiagnosed for at least 15 years and have major damage to my body. I'm not only afraid of them but I'm damaged from antibiotics as well as Lyme.

My daughter did great with oral abx.

Living well long term on oral doxy. Gastric effects are minimal, thanks to Dr. Ohirra’s probiotics plus an anti-fungal (nystatin). Feeling good! I fear PICC because of my history of a-fib (probably due to Lyme). A-fib is now resolved, but I still fear messing with my heart.

My lyme doc said they are very beneficial for some. I prefer herbs but this is my choice. LLMD should also address some abx related issues (stop giving Cipro for example) and considering genetic mutation before pushing sulpha drugs and assuming it is herx reaction. (Instead of dealing with excess ammonia)

I’m on my own.

I was petrified but antibiotics were a breeze. The herbs were ROUGH; I ended up in hospital with dehydration, enlarged spleen and CRP levels of over 100. I was killing TOO much too fast apparently. Throw in some MTHFR mutations and wow. Rough times.

I know quite a few who are afraid to find out if they have it and afraid to get tested.

I still need to meet someone who has successfully recovered from using antibiotics. I know of some who have been taking them for 10 years.

It really depends on each patient on the level of absorbtion through the gut

I’m way more afraid to NOT have treatment

I was willing to do ANYTHING. Oral antibiotics worked for me. A combo of several and pulsed.

Antibiotics don't work. I have tried it for 2.5 years. Worse outcome. Only thing they do is suppress the immune system, and damage all good bacteria. Lyme changes form in the presence of doxycycline.

What is Scary is the level of ignorance that many Doctors express when asked about Lyme Disease, It’s astounding how Insurance companies don’t want you treated

I'm on cowdens protocol. I didn't want to start with antibiotics. I'm not too far from month two.

ME. I did PICC only by pressure for 5 weeks. I have never taken 1 oral abx despite being given them by LLMD. Side effects and herxing are scary. I have Gastritis and GERD horribke and orals will kill my stomach.

Long term (maintenance) doxycycline got me as close to a cure as I think I can get.

3 rounds of picc lines countless orals. Stem cells.etc etc etc. Still sick buy seeing a bit of relief from the 3 antibiotic protocol with Dapsone

That would be me. I'm not doing antibiotics until there is no other choice. And even then maybe not.

That's me too. The side effects from anti bios were overwhelming. I found out about Beyond Silver Structured Silver Liquid. It eliminates all bacterial, viral and parasitic invaders. It does take time to work. Herx isn't too bad. Recommend. I was chronic and very long term....No one believed me as I stated my symptoms. ..until I got the igenex myself.

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3 weeks ago

Dr. Daniel Cameron

For those of you with children returning from camp, it's important to recognize Lyme disease. Have you had to take a child to the doctor for an evaluation?
#LymeConversations
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For those of you with children returning from camp, its important to recognize Lyme disease. Have you had to take a child to the doctor for an evaluation?
#LymeConversations

 

Comment on Facebook

Very important to catch it early. I've been packing something from ticks for 58 years! It didn't kill me, but I think it tried to a couple times! You don't want your kids going through adolescence packing it. That was a very painful period of my life!

3 weeks ago

Dr. Daniel Cameron

Dr. Bransfield described suicidal feelings in Lyme disease patients. (1)

Have you or someone you,be known wit Lyme disease had duicidal feelings.

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 suicidepreventionlifeline.org/

#LymeConversations

1. Bransfield RC. Suicide and Lyme and associated diseases. Neuropsychiatr Dis Treat. 2017;13:1575-1587.
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Dr. Bransfield described suicidal feelings in Lyme disease patients. (1)Have you or someone you,be known wit Lyme disease had duicidal feelings.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/#LymeConversations1. Bransfield RC. Suicide and Lyme and associated diseases. Neuropsychiatr Dis Treat. 2017;13:1575-1587.

3 weeks ago

Dr. Daniel Cameron

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

1. Lyme encephalopathy (1)
2. Lyme neuropathy (1)
3. Neuropsychiatric Lyme disease (2)
4. Pediatric neuropsychiatric disorders - PANS (3)
5. Lyme carditis (4)
6. Autonomic dysfunction - POTS (5)
7. Post-treatment Lyme fatigue - Post Lyme disease (6)
8. Neuropathic pain (7)
9. Persistent symptoms after Lyme disease (8)
10. Concurrent Co-infections e.g. Babesia (9)

#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
... See MoreSee Less

The types of Lyme disease presentations have increased dramatically over the past 40 years.  Have you had one of these presentations?1. Lyme encephalopathy (1)
2. Lyme neuropathy (1)
3. Neuropsychiatric Lyme disease (2)
4. Pediatric neuropsychiatric disorders - PANS (3)
5. Lyme carditis (4)
6. Autonomic dysfunction - POTS (5)
7. Post-treatment Lyme fatigue - Post Lyme disease (6)
8. Neuropathic pain (7)
9. Persistent symptoms after Lyme disease (8)
10. Concurrent Co-infections e.g. Babesia (9)#LymeConversations1. 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

 

Comment on Facebook

Thank you for sharing this, Dr. Cameron!

Yes! Going on 6.5 years and still dealing w a variety of issues.

Thank you SO much for posting references Dr C! It's invaluable when dealing with lawyers.

yes, all of the above

Unfortunately, I have a perfect score there.

I've had 9 out of the 10

Yes, Yes, and Yes ! 10 times yes. Finnish infectious diseases professor study my history and said that I suffered from Lyme disease since childhood and now I'm 72 years old multi-handicapped.

Yes to all!

1, 3, 5, 7, 9, & 10

Yes

Well, there are many different pathogenic borrellia bacteria AND us people are pretty diverse too!

Yes

Yes

#2. & #8

Dorian S Bryant

Lyme encephalopathy

It depends on who you ask. How pathetic is that?

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