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.
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
#Lyme
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?
#LymeConversations
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
"Unfortunately, there is not a single Lyme literate health care provider at the Martha’s Vineyard Hospital or any of the Island’s medical clinics." writes Dreeban in VineLand Gazette. Have you found it difficult to find a doctor experienced in treating Lyme disease?
vineyardgazette.com/news/2019/11/07/lyme-disease-requires-complex-thinking #LymeConversations
Lyme Disease Requires Complex Thinking
A recent story in the Vineyard Gazette (Draft Guidelines Released for Treatment of Lyme Disease, 9/6/19) presents simplistic and insufficiently researched coverage of a complex and controversial topic...I’d be more surprised if there were any at all. Seriously how many hospitals HAVE Lyme Literature Medical Professionals?
It was tough in NM in 1989. There was one LLMD who actually hosted Dr. Burrascano here to speak on Lyme. He diagnosed and treated me initially bit moved into an Administrative position. Luckily I found an immunologist/allergist who was willing to treat long term with antibiotics.
I was lucky, my family doctor is an LLMD, the one affordable one in this country.
I was misdiagnosed in 1990 by 17 Drs. Then I was blessed to find Dr. Burrascano in East Hampton. He saved my life!
I need a doctor for my 11yr old daughter who tested positive for lyme. Beaumont Texas or as far as Houston Tx, Galveston Tx
None down here in Fort Lauderdale/Miami. Even if there were there’s no perfect testing and cure so we are mostly guinny pigs until then!We have to find a naturopath or functional Medicine Practitioner to help us get more comfortable.
I had to travel 3 hours to get treated by you 12 years ago.
The worst thing to me is not that they don't have the knowledge. The issue is when they refuse to admit that Chronic Lyme doesn't exist. I saw a doctor recently, who became snarky bc I wouldn't agree with him and had his assistant call me to tell me that he wouldn't refill my meds. I was so very frustrated that I hung up on her. What can I do? Giving up seems like the only thing left.
The inability of patients with tick borne diseases to find adequate and appropriate healthcare is a national disgrace. The IDSA Guidelines regarding tick borne diseases are so artificially restrictive that ID physicians that are IDSA members actively seek to rule out tick borne disease as the cause of a patient's illness in their differential diagnosis. Then, once eliminating tick borne diseases as part of the differential, the very same ID Physicians offer no other cause for the patients' illness. This conduct by IDSA physicians is criminal medical neglect by failure to diagnose and the physicians must be legally held to account by state courts. Post mortem investigations of deceased chronic disease patients must be conducted to determine if tick borne disease was ultimately the cause of the patients' death.
Especially in Ontario, Canada.
There's just a few for the whole of Canada!
What town was this opened at
No dr no where. Disgraceful
CANADA... ya-huh but secretly treat SOME! 👽💚💚💚
Not Surprised !!!
Traci Turner Hickey
Yes
None in the U.K.
I WTF
My son and I nearly died before, by the grace of God, two Lyme-literate Functional Medicine doctors opened a clinic in the town next to ours. They used to work in the large public clinic in our town, but left because as doctors who took their oaths seriously and Christians who took their faith even more seriously, they could no longer work for an institution that would not allow them to test, diagnose and treat Lyme disease and co-infections appropriately. They knew they were sending home people to suffer and die and couldn't stand it any longer. All the training, certifications, time off, etc. that they needed to become fully certified LLMD's they paid for on their own. Btw, the public clinic is owned by the Catholic church as so many are, but is one of the most UN-Christian businesses that exists. Except for these two doctors, there is no LLMD for at least 100 miles. As far as I know, they are the only two Functional Medicine LLMD's in the state. No one else who treats Lyme also treats co-infections, treats the gut to prevent damage from antibiotics, heals organs damaged by the infections, uses natural products to fight the infections and also uses diet (food-as-medicine.) People come from all over the US to see them.From time to time, I still have to see a mainstream doctor for some issue other than Lyme, and without fail, they always say, "Is she a real doctor?" or "Aaaahhh, NOW I see: Functional Medicine," followed by a smirk or an eye roll.Several new "Lyme clinics" have opened in the state but they are frauds. They still only provide the standard 21 days of doxycycline, but will also give you massages, acupuncture and other types of New Age, Eastern medicine pagan voodoo "treatments" that masquerade as "comprehensive" Lyme treatment.
Only a couple in Australia with limited knowledge, and they are intergrative Drs being witch hunted by the AMA and gvt. It’s disgraceful.
None here in Pennsylvania either..God forbid your kid should get a Tickbite and go to tbe pediatrician. One of the pediatricians here at a local practice refused to treat my friend's son..who actually had a bullseye rash and the mouthparts were left in his arm. The stupid ass pediatric dr told the boys mother..that if he treated every kid who had a Tickbite and a rash with antibiotics...it would be like the opiate Epidemic😳😳🙄🙄 And this kid had the bullseye rash!! So most likely this kis will end up.with chronic neurological lyme hell. Imagine if a kid walked in sick as all hell from his Tickbite but didnt have the bullseye rash..he'd probably write a referral for the kid to see a psych. I mean its totally ridiculous how Tick bite sepis patients are treated around here in Pennsylvania.
Powassan virus causes the death of former Senator Kay Hagan from Greensboro, NC.
"She had suffered from acute brain inflammation, or encephalitis, in 2016, and since then had been dealing with associated complications such as pneumonia and neurologic decline." #LymeConversations
Rare Form Of Tick-Borne Illness Led To Senator’s Death
Former U. S. Senator Kay Hagan passed away due to a rare tick-borne illness.Until they suffer from a tick borne illness they won’t get it !!! I laid in top-notch hospitals in Washington DC and no one could figure out was a the matter with me took over a year I was all but dead !! Still have lingering symptoms after a PICC for 17 months ! Still dosing orals ! If it was not for Dr Beals on the Eastern shore of Maryland and Dr Jemsek in Washington I would be dead! 
God bless her and her family. May this be the torch that lights a fire under Congress to wake up and deal with these issues like the emergency they are!
They can call it rare all they want, it's been around a long time and more people have died of it than we'll ever realize.
Too bad the doctors in the south won't take this seriously. I was reinfected before I moved to SC and I have 9 of 10 bands positive. Can't take the 15 hour drive back up to see Dr Cameron so I am self medicating with whatever I can get my hands on. Sad.
Michigan has had deaths from this disease too
People don’t get it unless they get it 😢😢
It's real.
Christina Calabria
Sad.
Not rare
People have been dying, miserably, from tick borne diseases, especially Lyme, in this country since the 1970’s. It’s accelerating with climate change and expansion of deer into suburbia, as well as the weaponization of the organisms by our government. Maybe now we’ll get some action. Maybe. But there are too many people at the IDSA and CDC making money off other people’s suffering. I’m not that hopeful.
And what is the CDC doing about this? It’s crickets.
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
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.
![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.](https://scontent.xx.fbcdn.net/v/t1.0-9/s720x720/74188267_2472080439744196_2224027004666118144_n.jpg?_nc_cat=109&_nc_ohc=58-CfV-GN-IAQkZbnhmg1zOHy-OVNjuhju4hq7rC0WYfp-iWvSY5A_b9Q&_nc_ht=scontent.xx&oh=d344b852893d4295fc4de7a61bb7e6eb&oe=5E42701F)
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
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
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.
Researchers race to develop a Lyme disease vaccine. At the forefront is a European company Valneva, which is in phase 2 clinical trials for a vaccine against 6 strains of Borrelia. Read more in today's #ldscience blog.
Join me for a Facebook Live discussion on the topic on Wednesday, October 30 at 8pm ET. #LymeConversations
Researchers race to develop Lyme disease vaccine - Daniel Cameron, MD, MPH
LYMErix was withdrawn from the market in 2002 after concerns over its safety. Since then, there has been growing speculation as to whether researchers will ever be able to develop an effective and s...As much as I suffered from Lyme and other tickborn infections, never in a million years would I compromise my immune system more with any immunizations.
They can't even come up with reliable test,, or.. agree on if it even exists.. you think any one with a brain cell left would trust another vaccine?
Over my dead body would I EVER trust a Lyme vaccine. You are aware of the fraud that took place with the first one, the Dearborn stunt and coverups that have cost millions of people their health and a chance at getting better. Why don’t you focus on the truth and fix this mess?
How about actually allowing doctors to treat this accurately. That's the real problem we face.
The FB live never came through. Maybe he had second thoughts after reading all these comments. Having lyme makes many lots of money. We aren’t stupid or gullible, we’re sick!
6 strains of borrelia! That'd be real good if Lyme symptoms came only from borrelia!
Will they be putting proven carcinogens, nuerotoxins, heavy metals, aborted DNA fragments, animal DNA, and more into this va$$ine too? 🤦🏻♀️
Vaccines are never the answer. All the adjuvants and fillers destroy the immune system. Causing disease in the body and preventing the means for the body to naturally heal via immunosuppression.
These companies admit that they are more interested in shareholders profits than the welfare of the recipients of these concoctions.
How can you vaccinate when there are hundreds of strains? Just another money maker to get immune system destroying chemicals into people.
How can you vaccinate when there isn’t an accurate test that’s “approved”?!
The best time to get a Lyme vaccine is after you are already dead
So what about the ppl that already have it?! Can't you work on a cure for us? then a vaccine for others?
I had that first vaccine.
Is there a technical difficulty with FB live event???
This should be interesting 👍🏻
Race to work on a bonafide cure.
No way- there are many co infections of Lyme won't treat them all
Is this happening??
No thank you.
Elke Hawkes
It is a race to make more money not to protect the public from "Lyme"
😊
Not a chance in hell
Race to work? For a cure? Like theyve been doing since the 50's? Oh wait...that was a race to weaponize them as fast as possible. Now 69 years later a race for a vaccine? No thanks. Just like no thanks to the flu vaccine. I trust these companies like i trust my house to magically turn into gold.
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.
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.
