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.

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Lyme disease trials are flawed.

The NIH sponsored Lyme disease trials are flawed.

The largest NIH trial is 70 patients. The smallest NIH sponsored trial is 37 patients.

The subjects had been ill for years.

Their patients had already faileds treatment.

I find it hard to make a treatment decision for my Lyme disease patients based on these flawed trials

Have you being denied therapy based on these trials?

#LymeConversations

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But why can't people get help? Why do doctors deny there is no chronic Lyme disease?? Why, why why? So many "cures "on line . I watch my son deteriorate. Why is there no "walk for awsreness",marathon for research.? If there are Dr s who treat Lyme disease,their fees are impossibly high and how do you find them

Twice excluded from the NIH long lasting lyme study. Disheartening, that the selection seems limiting. We need to get to the bottom for all affected.

Dear Dr. Cameron,Patients don’t fail treatment. It’s the treatment that fails the patient. This may seem like a minor distinction but I hear it all the time as an RN attending medical lectures. It’s standard medical jargon to say “the patient failed therapy”. Words matter. We patients in the Lyme community need to feel like doctors are on our side. The small gesture of changing this colloquial phrase is profound. Please be the example and encourage other practitioners to follow.Thank you!

Yes. The WHO codes and standards are set by the CDC as a reputable world standard, so Australia, England,And the rest of the western world go by these standards. No one can refute their studies even though they are flawed.

Some individuals with Lyme disease get better.

Some do not.

Friends and family may be annoyed with their illness.

A worker can get angry with their coworker.

Teachers can get frustrated with their students.

Spouses can seem distant.

I have Lyme disease patients who feel the stigma of Lyme disease.

Have you felt the stigma of Lyme disease?

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Some individuals with Lyme disease get better.Some do not.Friends and family may be annoyed with their illness.A worker can get angry with their coworker.Teachers can get frustrated with their students.Spouses can seem distant.I have Lyme disease patients who feel the stigma of Lyme disease.Have you felt the stigma of Lyme disease?#LymeConversations

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People have to get together and make a loud ,public noise to force government to recognize and find a Cure!!! I don't know how to go about it myself,but there must be someone who knows how to organize such things.Talking about all the symptoms obviously is absolutely useless.

I've watched my son suffer for about 15years. It gets progressively worse.looks good so is treated like hypochondriac. Struggles every day. When will there be any help?

Yes. Mostly the stigma of people not believing I have Lyme because I look healthy. So, of course, I’m just dramatizing my ailment

Lyme has destroyed my entire body. Not only has it affected me neurologically, but it also affected all of my organs. The amount of illnesses and diseases my body has endured and fought off is astounding. I am in pain daily and I have become accustomed to my new normal. It’s hard to do everyday things when you “look” normal to others, but physically and emotionally you are completely drained. No one else gets it.... 😞

Even therapists don't get it (but think they do). Lyme intensifies feelings of isolation, pain, depression, fatigue, helplessness, etc. caused by other diagnoses (i.e., PTSD). When you're trying to pace yourself and the therapist tries to push you through treatment for non-Lyme issues, you know they don't understand. I've mentioned Lyme/Babs only 3 times in 1.5 yrs but because I look ok, it's lost on her as she wants me to be more active, join meet-ups, get new friends, etc. All extremely exhausting things for a Lymie.

Yes, there seems to be an undercurrent of thoughts to work beyond. Even family believing surely I still have some on reserve in the tank.

Oh my yes! From 1989 until today. I all different forms and most of my relationships suffer somewhat.

Definitely Lonely & isolating. It’s hard to find a primary care or pediatrician that will give compassion to your child & their lyme health history. They definitely won’t entertain treating it clinically. Recently my 12 yr old was laughed at by her pediatrician when she explained a New symptom. She said to my daughter, we know she’s a very sensitive child. There’s nothing I can do for her. It feels like a form of betrayal.Beyond Grateful for Dr Cameron & other physicians that are dedicated & compassionate to those who suffer this bizarre disease. Gives me hope.

Alone, suspected of exaggeration, compassion fatigue all around, relationships destroyed, alone.

Absolutely 💯 Especially as Chronic Lyme disease is simply not recognised in main stream medicine which doesn’t help with the sceptics in your surroundings. Now add that to neuropsychiatric symptoms and one is TOTALLY 💯 isolated. Even by my primary health care Dr. It’s refreshing to have MDs like Dr Cameron on board in the fight for care and especially awareness. But mainstream medicine and insurance companies need to get on board!! Thanks for taking time out of your precous day caring for patients to highlight awareness and help the fight for those of us not under your direct care. It is appreciated. Thanks.

Yes...very isolating. Non-believing family/friends are so hurtful...breaks trust. Those sick of hearing about it should imagine how awful it is to live it.

Isolating, misunderstood by family and friends.

I got re bitten last year. I want my old "Lyme and cos" back. I'm so foggy and dizzy and nothing seems to be helping. I feel hopeless.

Yep. Recently, my "friend" saw me having a full scale Lyme day and called the police and paramedics saying I was delirious.

More an issue of spouses and family don’t comprehend or empathize with those suffering...

Absolutely.. every day of my life.

Very interesting article

Yes. Horribly so. It hurts.

Yes, isolating.

Yes I have.

Oh yes

Yes !!

Sure have 😞

Yes

Start 34th year not better all can say is it sucks

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2 weeks ago

Dr. Daniel Cameron

Fear of pain in adolescents with Lyme disease.

“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. #LymeConversations

You can read a full text of the article at www.ncbi.nlm.nih.gov/pmc/articles/PMC4721261/

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.
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Fear of pain in adolescents with Lyme disease.“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.1Pain-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.1I 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.  #LymeConversationsYou can read a full text of the article at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4721261/1. Simons LE. Fear of pain in children and adolescents with neuropathic pain and complex regional pain syndrome. Pain. 2016;157 Suppl 1:S90-97.

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The article Fear of pain in children and adolescents with neuropathic pain and CRPS is available on line at www.ncbi.nlm.nih.gov/pmc/articles/PMC4721261/

My son has been in a wheel chair for 4 years because of Lyme to scared to leave his home and he is scared of everything! His life has been taken away ! You never want to see your child go through this !

How about fear of CONSTANT pain every single day every. Single. Day. 😩

Yes, I have seen it with my son. He was afraid to go anywhere and do anything because he thought he might have a panic attack or pain attack in public. His anxiety was as debilitating as the infections themselves. These diseases have taken away his self confidence.

If you've ever experienced it, they have a good reason to be worried. 🙁

It’s not just kids, trust me. Adults have it, too.

I see it on a regular basis

Megan Huntington-Aten Sadie Mae

Bernard Hawkins😳

Am here to let the whole world know that I was diagnose of herpes 3years ago were all hope was lost and I had nothing to do about it,I just accepted the faith that one day I will cure of this disease and I just pray everyday for a helper and one day my sister introduce me to a herbal man called Dr Ekpen that she saw on internet,well, I gave him a try on his email drekpenherbalisthome@gmail.com,I was not fully convinced until he sent me the herbal medicine which he ask me to take for two weeks I took it with faith and i went for a retest in different hospitals and today am cured of this disease and am also using this medium to let all those having STD,like herpes and the rest not to give up,their is a man who can cure you,his name is Dr Ekpen contact him on drekpenherbalisthome@gmail.com or you can also watsaap him +2349062286491

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3 weeks ago

Dr. Daniel Cameron

I completed my first Facebook Live presentation only to find out it did not post properly. I have attached a copy. I am so sorry. I will work the details out for my next presentation. #LymeConversations ... See MoreSee Less

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Thank you, Dr. Cameron. We are a very tough crowd to know what to do with. I appreciate your unrelenting spirit. May we all do our work in the vector bitten community to bring about changes needed and to heal.

Best doctor ever ,,,, love you Dr. Cameron !

You are Awesome Dr. CAMERON

great video. thank you

Please continue my daughter and grandchild has Lyme we show need a cluleThanks for you not giving up on this Diease 🙏🏻

Thank you😊

A doctor of mine admitted he had a patient that insisted on getting the vaccine you spoke about. He did not have lyme. 3 years later he died from full blown lyme

We need a cure for Lyme not a vaccine Please create medication that will bust the biofilm while taking an antibiotic that is the key why so may of us cannot be cured

Peter

So that’s why I couldn’t watch it. I thought it was me doing something wrong. Thanks for posting this!

Vaccines don't really protect humans from disease. They certainly do not protect the public from CDC & Pharmaceutical Company greed. The trust will never be there.

Well im glad your trying but after 18 yrs of treating 34th year of lyme an babesia twice ive come to the conclusion its close to endtimes im now just treating the pain an waiting on the Lord thanks for your trying rrm

They are already setting up the lies to claim a Lyme vaccine works. There are saying if you get a Lyme rash AND a positive blood test they still can claim you don't have Lyme disease even though you do."As new vaccine efficacy trials begin for Lyme disease, it is important to recognize factors that may lead to false conclusions of vaccine failure. These include rashes that are very similar in appearance to erythema migrans produced by the bite of the lone star tick that causes a disease of unknown etiology, the southern tick–associated rash illness [40]. Furthermore, atypical erythema migrans rashes may be mimicked by a spider bite or drug eruption. Other factors to consider are infections than can cause cross-reactivity in certain Lyme disease serologic tests (eg, syphilis, rheumatoid arthritis, severe periodontitis, and relapsing fever caused by Borrelia miyamotoi). Non–B. burgdorferi infections that cause seroconversion would by themselves be a false indicator of vaccine failure." academic.oup.com/cid/advance-article/doi/10.1093/cid/ciz872/5588349

Am here to let the whole world know that I was diagnose of herpes 3years ago were all hope was lost and I had nothing to do about it,I just accepted the faith that one day I will cure of this disease and I just pray everyday for a helper and one day my sister introduce me to a herbal man called Dr Ekpen that she saw on internet,well, I gave him a try on his email drekpenherbalisthome@gmail.com,I was not fully convinced until he sent me the herbal medicine which he ask me to take for two weeks I took it with faith and i went for a retest in different hospitals and today am cured of this disease and am also using this medium to let all those having STD,like herpes and the rest not to give up,their is a man who can cure you,his name is Dr Ekpen contact him on drekpenherbalisthome@gmail.com or you can also watsaap him +2349062286491

The Lyme disease case definition was intentionally falsified, and false & misleading information was provided to the FDA to fraudulently obtain approval for a vaccine (LYMErix) which gave people the disease it was intended to prevent. It was made with recombinant outer surface protein A (OspA), a lipoprotein from Borrelia burgdorferi. These “Osps” cause the disease when transmitted by a tick bite, and they cause the same disease when they are duplicated in a lab and called a vaccine. There were multiple lawsuits and LYMErix was pulled off the market after three years. Since the alleged fraudulent acts have been concealed for more than 20 years, the lipoprotein used in LYMErix was never prevented from being used in other vaccines. Meningococcal vaccines currently on the market and a new Lyme vaccine currently in clinical trials contain the same lipoprotein. SmithKline (now GSK) was responsible for LYMErix, also manufactures one of the meningococcal vaccines, and has first option to marketing rights for the new Lyme vaccine. Therefore, it is urgent that a criminal investigation be opened and charges pursued against the alleged perpetrators. Not only are people being harmed by these vaccines; people who have Lyme disease from a tick bite cannot get diagnosed or treated for what is a chronic immune deficiency disease that was excluded from the case definition in 1994.

Regarding the biowarfare or “Swiss Agent” theories: The question is, do you want to jack around for another 20, 30, 50 years trying to find a different cause of tick bite post sepsis immune paralysis?....Or should we use the data we already have, which proves that Borrelia burgdorferi certainly can be the cause of your misery and is vastly underdiagnosed because:• CDC knowingly falsified Lyme diagnostics, excluding all cases except those with the most robust immune response, to facilitate SmithKline’s LYMErix trials, which would otherwise have failed.• Triacyl lipoproteins like OspA and most of the other outer surface proteins on Borreliae cause immunosuppression, explaining both the reason LYMErix failed, and the reason serology (antibody)-based diagnostics are useless.• CDC officers and prominent figures in Lyme research have owned and currently own patents for test kits and biologics that they know to be scientifically invalid.• CDC acts as gatekeeper for FDA approval of Lyme diagnostics by requiring all tests be reverse engineered to fit the false case definition they enforce through their serum repository.• Individuals who participated in the Dearborn scheme to falsify the diagnostics, profit from providing samples to the CDC serum repository.• A certain Lyme academic reported the CDC Dearborn criteria to be 15% accurate; administered OspA biologics trials until participants with severe adverse events started bringing lawsuits; published multiple times about Lyme being immunosuppressive; and has acted as a paid third party reviewer for multiple diagnostic device manufacturers, providing known false data to the FDA for device approvals, as well as “daisy chaining” his own reviews for FDA 510(k) approvals.I could go on and on. The evidence is overwhelming that only a miniscule number of actual cases are being acknowledged while the CDC and its co-conspirators continue to maintain the pretense that the Lyme case definition is valid. Many individuals profit from this scheme. That’s called fraud, racketeering, antitrust, breach of fiduciary duty, medical malpractice, etc.

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4 weeks ago

Dr. Daniel Cameron

Balancing the risk of antibiotics against the risk of chronic manifestations of Lyme disease.

Leading medical centers continue to describe Lyme disease patients with chronic manifestations of Lyme disease.

Some of these patients benefited from antibiotic treatment.1-3 Some have not.4,5 Some of them had had adverse events.

Some doctors have concluded the risk of antibiotics is greater than the risk of chronic manifestations of Lyme disease.

Other doctors have concluded the risk of chronic manifestations of Lyme disease is greater than the risk of antibiotics.

I balance the risk of antibiotics against the risk of chronic manifestations of Lyme disease with each of my patients. You can read more about balancing the risks in the IDSA and ILADS guidelines.

Were you informed of the risk of antibiotics against the risk of chronic manifestations of Lyme disease? Please join the conversation in the comments below. #LymeConversations

1. Logigian EL, Kaplan RF, Steere AC. Chronic neurologic manifestations of Lyme disease. N Engl J Med. 1990;323(21):1438-1444.
2. Logigian EL, Kaplan RF, Steere AC. Successful treatment of Lyme encephalopathy with intravenous ceftriaxone. J Infect Dis. 1999;180(2):377-383.
3. 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.
4. Klempner MS. Controlled trials of antibiotic treatment in patients with post-treatment chronic Lyme disease. Vector Borne Zoonotic Dis. 2002;2(4):255-263.
5. Berende A, ter Hofstede HJ, Vos FJ, et al. Randomized Trial of Longer-Term Therapy for Symptoms Attributed to Lyme Disease. N Engl J Med. 2016;374(13):1209-1220.
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I have patients who not informed of the risks. This video is intended to encourage individuals to understand the risks.

I appreciate that each Lyme doctor I have seen gave me this information and made sure I understood it. I think all Lyme patients should be told about your published protocol and given the option to follow it if they want to.

I was not informed of either. Also, right from the first time I saw a traditional doctor after finding a tick on me, it seemed to be assumed I knew my treatment options. I had to ask to be tested a second time a few weeks later and the doctor offered me doxycycline before the test. She didn’t tell me that tests were unreliable and that taking the first course was a precaution some took. I said no because of all the cautions about overuse of antibiotics. Because of this I went through a year of bizarre illnesses before getting a better test that I sought on my own. Now I wonder what I’ll be dealing with the rest of my life.

No I wasnt informed. My lyme diagnosis is ignored now after doing many months of antibiotics. And now just given diagnosis of fibromyalgia. No retesting, no seeing if they really have it under control, and not knowing if lyme disease is still the factor of my life!

I had rapid nuerological decline. My doctor finally used a antibiotic that cross over the BBB and within 3 weeks, my life slowly returned. But then every time we tried to stop the antibiotics it was a rapid return of symptoms. I’m finally off antibiotics after many years but I believe I would be dead or at least in a rest home with early onset Alzheimer’s.

I think that we should have options of treatment. Instead of no treatment. Always we should be informed of the risks of any treatment.

There’s something worth reading in the IDSA guidelines???

Yep. Sure was from LLMD.

Dr’s don’t seem to know what to do when it’s a patient that can’t take certain antibiotics or has unusual reactions to certain antibiotics.

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