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.
Have you heard any recommendations for Lyme disease that appear outdated?
There are a growing number of acute and chronic manifestations of Lyme disease and co-infections.
The single-three week course of doxycycline recommendation for Lyme disease appears outdated.
Have you heard any recommendations for Lyme disease that appear outdated? Please join the conversation in the comments below.
#LymeConversations
1996 originally treated for 3 weeks, nah, didn't work. Then I found you
My Infectious disease Dr thinks that 1 antibiotic is sufficient to eradicate late stage Lyme, taken for 3 months.
Growing numbers of doctors treating Lyme disease longer than 21-days.
What treatment approach are physicians adopting in their own clinical practices?
Tseng and colleagues described 488 physicians who treated more than five weeks in a review of insurance claims data in the Northeast USA.
They made several observations:
1. The average length of treatment was 86 days with a range of 35 to 404 days.
2. 48.8% were treated with more than 2 antibiotics.
3. 43% of patients were switched from one antibiotic to another.
4. 18% were prescribed combinations of antibiotics.
The authors did not address why 488 doctors treated their Lyme disease patients longer than the 21-days as recommended by IDSA.
I have seen a growing numbers of doctors treating Lyme disease longer than 21-days.
Were you treated longer than a single 21-day course of antibiotics for Lyme disease? Please join the conversation in the comments below. #LymeConversations
1. Tseng YJ, Cami A, Goldmann DA, DeMaria A, Jr., Mandl KD. Incidence and Patterns of Extended-Course Antibiotic Therapy in Patients Evaluated for Lyme Disease. Clin Infect Dis. 2015.
No I was not, I was told the 14 day antibiotics works and Lyme goes away n never comes back. Liar! It's the opposite n never goes away! Had to find a Lyme doctor to save my life and discover 2 more tick infections. Better late than never thanks to Ilads. <3
I'm in the UK, and managed to squeeze a further 2 weeks of Doxy from my GP, and then got Amoxicillin for 4 weeks. Just finished the course today. They weren't happy prescribing this amount, and even tried giving me 1.5 gms of Amoxy a day, instead of the recommended 3-6 gms!! They will be pleased I can't bother them right now, as I've been referred to the Infectious Diseases clinic of my local hospital. These departments are notorious for dismissing people's clinical symptoms (and previous positive blood results) after two course of abx. Their job is done, basically, until you show up unable to move ..
When my son and I first saw our LLMD, she asked me how long I expected treatment to last. At that point, I had already read up on it some. I said that typically it takes about 1 1/2 years for someone to feel really well again and back to normal. She said that I was right.For some, it takes even longer. It all depends on how long a person has been ill, how much the infections have invaded the body and brain, what co-infections the patient has and how their body reacts to the infections and the treatments. Lots of variables there. When I asked my LLMD how long she treats her Lyme patients for, she said "until the symptoms are gone and they feel well." As long as it takes.
I couldn't get more than 7 days of Doxy 2 years ago from my PCP when I was first bit. My world fell apart this July when all the Lyme made it's entrance. Now I am chronic and he only prescribed 14 days, I begged for more when I was still sick and he reluctantly prescribed 3 more weeks. Still possessing ill effects in Aug he fervently said NO more Doxy. I will set you up with our counselor, oh and take Zantac because what you feel under your ribs is ulcers. He thought it was kidney stones, but after a 2k CT scan it was not.Found Dr Carr in NH, I live in VT. After a very thorough Lyme history he prescribed me Doxy with more strength for a month. I am halfway through my prescription and feel so much better.PCPs need education.
Well I am glad to hear this but haven’t experienced that on the tic endemic east end of Long Island There are a tremendous amount of extremely ill people out here. I try to educate people when I can but most are not receptive Have heard the dangers of antibiotic lecture a million times but psyche meds and immunosuppressants are ordered freely.
I have seen 2 different antibiotics being used at different lengths recently. Amoxocylin for 28 day as opposed to Doxycycline for 21 days. thoughts?
I’d been hearing about Drs who were ... thank you for confirming this Dr Cameron! I believe that, at least to these Drs, the IDSAs “guidelines” are irrelevant. They are just quietly doing what their patients need, and that makes me feel hopeful. ❤️
Got Lyme disease 10 years ago and did not get treatment right away because the Tick was on my back under my skin. Finally my friend saw it and by that time I was so sick. Suffered from the worse hot and cold flashes every 5 to 10 minutes 24 hrs a day. My menstrual cycle stopped completely, my potassium dropped to 2.7 while my wrists were cramping with spasms. When I finally got to my Doctor, he was too busy to see me. A PA examined me, tried to remove the tick and gave me a script for 2 weeks of amoxicillin after telling her that medication was ineffective for me in the past for Strept throat. Now still suffer side effects - chronic fatigue, pain and inflammation all over that comes and goes anywhere it pleases, whenever it pleases. June 2019 got bit on my back again - 2 more bullseyes. New doctor and 4 weeks doxycycline felt better for 10 days then the Lyme started to come back so I did 2 more weeks of doxycycline and feeling better now. Hope it lasts!
30 days of doxycycline was the maximum I could fight for (and I really had to fight for it, even tho my then 15yr old had a clearly defined bulls-eye mark). He was diagnosed early, so we'd hoped 30 days would do. 2 years later, Lyme is still wreaking havoc on his life, and we have been on our own trying to figure things out. Medical support is nonexistent here in Ontario, Canada, and there's only so much money in the bank (and on credit) for half-measured, therefore unsuccessful, alternative care.
Glad to see that more and more doctors are realizing that 21 days is just not enough. Of course the IDSA Lyme Committee must be foaming at the mouth at this news. They’re slowly losing control of the narrative.
I was treated for 4 months with Doxy, and 8 weeks of IV Rocephin. The antibiotics unfortunately reactivated some viruses I have had, so my LLMD started me on a natural course of treatment of Frankensense Essential oil, and Lauricidin, along with an anti inflammatory diet which I have been on for a year now and I feel wonderful!
I have only seen LLMD treat Lyme Disease my regular doctor and many other doctor's did not believe because standard tests dont work... She got me better but was cut off and could not afford it any longer ... still have Lyme and its killing me slowly
21 days is not enough and I think it should be treated with more than one antibiotic to give it a 1 2 punch and attack any other ailments and you should see an expert like Dr Cameron who is the best .
Moro em Belo Horizonte Brasil, há um ano diagnosticada com Síndrome de Lyme Brasileira ou Síndrome de Baggio (pesquisador USP). Após um ano de investigação através do método eliminatório. Passei por vários especialistas e realmente falta conhecimento. Nenhum deles teve a ideia de que pudesse ser um carrapato, até que o clínico da unidade de saúde da minha área desconfiou, depois de quase um ano, que os meus sintomas: gripe, febre, calafrios, anemia, ciclo menstrual irregular, tonturas, vertigem, rigidez de pescoço e perda de visão. Solicitou o exame que é demorado, pois é feito na USP. Assim que chegou o primeiro positivo iniciei doxiciclina duas vezes ao dia até março quando recebi o 3 resultado positivo. Após um pequeno período sem antibiótico li aqui sobre a importância de retomar o tratamento uma segunda vez. Sugeri ao médico clínico e ele me ouviu. Voltei a tomar. Com o tratamento paralelo no centro de infectologia da UFMG reforçaram a necessidade devido às minhas dores e inflamações articulares Fui então encaminhada para o centro de reumatologia da UFMG onde confirmou o método de tratamento, inclusive método de tratamento do psiquiatra com venlafaxina 150 duas vezes ao dia e carbamazepina duas vezes ao dia. Mesmo com todos os medicamentos sempre estou sentindo dores se deito, se assento e se ando. Sinto que envelheci pelo menos 10 anos em um. E pior, sinto falta da doxiciclina.
I was bite by a tick on may 21st 2019, I had that tick sent to a Massachusetts Zoology lab for analysis. It tested positive for borrellia burgdorfuri and had partially fed. meaning it had my blood in it and I was exposed. I took that report to my PCP and she told me "the CDC says transmission can only take place after 36 hours" ......well thats BS it can happen in minutes...so 4 days later my neck was super stiff for a few days! candida and head aches. strange symptoms...the feeling of warm rush up and down my right femoral artery...and untimately loss of vision and siezures....so 6th months into it I got doxycycline and the ER after some sort of mild seizure.....my symptoms started to go away rapidly..then a herxheimer reaction...then feeling better...only to have a roller coaster of illness every day since... no when i take doxy it causes an aseptic chemical induced meningitis. and little to now relief of the symptoms....i tested positive on band 41 and 66. one test showed antibodies to borellia miyamotoi. which was said to have the ability to cross-react with burdorfuri OR babesia...how can that be borellia is bacteria and babesia is a protozoa? anyways....I am ill and I basically have no proof and the only doctors that treat are out of pocket and not using the insurance companies.I feel set up.
On my 9th month..three antibiotics before I felt results. Also doing herbals and started acupuncture last month.
I was treated longer than 21 days myself I'm healthy now,I was 2 years before I started feeling better.
12mo rotating various abx and a heavy supplement regime. LLMD was awesome. Didn’t feel a noticeable difference for first 5mo. Now... huge! About 90% better. I’ll take it...
My husband had two rounds of doxicyclne for 28 days..is currently on another antibiotic along with plaquenil and malarone
Yes, by you.. thank you.
I'm still on them 46 months as of October 1
Can't even get a diagnosis.
7 months on cocktail of orals and 8 months 2 antibiotics IV.
In Germany, more and more „doctors“ treating Lyme only 14-21 days. Low dose Doxycyclin... the most „doctors “ in Germany are killers without conscience...
John Martin
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” writes Sowinska from the journal BMC Family Practice. 1
The authors described the narratives of 18 participants with MUS.
The authors identified three features of their patients.
1. “the 'chaotic' structure of their illness narratives”
2. “concern that symptoms may be 'all in the mind'”
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.
Have you noticed the similarity of medically unexplained symptoms (MUS) and Lyme disease? Please join the conversation in the comments below. #LymeConversations
1. Sowinska A, Czachowski S. Patients' experiences of living with medically unexplained symptoms (MUS): a qualitative study. BMC Fam Pract. 2018;19(1):23.
Back in 2011, prior to being diagnosed with Lyme Disease (a Western Blot test by naturopath physician in which I had 9 out of 10 bands), I had numerous “false negative” tests . Our local hospital Emergency Room Doctor was actually going to admit me for having “congestive heart failure” when it fact it was Lyme Disease.
I think so. Without reliable diagnostics, there’s always a huge risk of misdiagnosis leading to inappropriate treatments or self diagnosis leading to self treating and all the risks that go with that. We need good tests for Lyme and related illnesses, and we need ALL DOCTORS to be willing to use them. Not everything that looks like TBDs is actually a TBD, but until There is confidence in diagnostics, people with MUS are left in limbo.
A better way to think of Medically Unexplained Symptoms is that doctors don’t have all the answers and that there are clearly illnesses and conditions they don’t know how to diagnose.
I do believe that “the 'chaotic' structure of their illness narratives” is most likely due to the doctors constantly interrupting the patient as s/he tries to answer the doctor's questions. That has been my experience with every mainstream doctor since I first starting having symptoms 18 or 20 years ago. They constantly interrupt me, talk over me and don't allow me to complete my answers. They even refute my personal experiences.I like getting questionnaires to fill out long before my appointments because then I do have time to recollect more details, organize my thoughts and make complete answers, but the doctors NEVER read them. Heck, they don't even look at my chart before my appointment. They walk into the exam room cold and wing it. I will never again take the time and make the effort to fill out one of those forms. I'll return it blank except for writing in big bold letters across the top, "I'LL BET YOU'LL NEVER READ THIS."
Morgellons is a rare skin manifestation of Lyme. It is controversial and patients are often misdiagnosed as delusional.
Yup! That's what the VA says I have because my Lyme tests come back negative. They've made no attempt to diagnose anything else except Lupus because of an elevated ANA. Guess what? I don't have Lupus. No fooling.
Good to see you back on FB, Dr Daniel Cameron!
I believe I just contracted Lime I have the bulls eye mark and it is quite painfull mild off and on head aches and fatigue muscle pains all though not sure if related
Yep, my daughter has Lyme. Her dad and I got to the point where we wouldn’t take her to any doctor alone. We both went. We were afraid one of us would be accused of Munchausen by proxy. Doctors just dismissed us for years, shrugged their shoulders, became frustrated, angry, etc. While she got worse, with crazy seemingly unrelated symptoms in every body system. Thank God for that one doctor who knew better and listened.
Financial cost of Lyme disease for one mother
“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?
Please join the conversation in the comments below. #LymeConversations
Gaudet, E. M., et al. (2019). "Parenting When Children Have Lyme Disease: Fear, Frustration, Advocacy." Healthcare (Basel) 7(3).
When do you just stop? I can function but am still "sick". My daughter suffered a concussion last September and during treatment for it discovered (due to my insistence that they do blood work) that she had lyme, strep, and mono as well. She has been through 2 rounds of antibiotics and just doesn't seem to be getting better. We have been to Drs. had more tests but no results that are helping. We now both just live with and try to manage our symptoms. I am at a loss for where to turn. The cost is adding up and with no answer in sight...
My young adult son still lives with me. He contracted Lyme, two strains of bartonella and babesia when he was in the 7th grade. He's now 31 and disabled because it took us 15 years to find an LLMD who recognized the symptoms of tick-borne disease and diagnosed him 3 years ago.I was diagnosed and began treatment at the same time. I'm also disabled due to the same infections as my son. I had to quit my profession as a world languages teacher. So, yes, I lost a lot of income. At the same time, my husband divorced me because he didn't want a sick wife who couldn't bring in a big paycheck, so I also lost the health insurance I was getting through him. I also took on a lot of debt due to the divorce. Thank God I had disability insurance through my job. If it weren't for that, my son and I would probably be in government housing and we would never have been treated for the tbd's. I might even be dead by now, because that's how ill I was. My income dropped by $16,000 per year. That's not counting the income my ex took with him when he left. And my expenses increased immensely with the biggest expense being healthcare, of course.
Has your doctor used clinical judgment to treat Lyme disease?
I rely on Evidenced Based Medicine (EBM) to treat my Lyme disease patients.
“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? #LymeConversations
1. Masic, I., et al. (2008). "Evidence based medicine - new approaches and challenges." Acta Inform Med 16(4): 219-225.
There is no such thing in the VA. All medicine is "laboratory" based. If your labs are OK you are ok. And "OK" is 5 points below to 5 points above the normal "range".
Yes. When I finally found one who knew what he was doing...Dr.#18 it was
Could compassion for Lyme disease patients improve the outcome for Lyme disease patients?
Could connecting with Lyme disease patients make physicians happier and more fulfilled?
A recent NPR interview with Dr. Trzecia suggested yes.1
“Compassion also seems to prevent doctor burnout — a condition that affects almost half of U.S. physicians. Medical schools often warn students not to get too close to patients, because too much exposure to human suffering is likely to lead to exhaustion.”
But the opposite appears to be true: Evidence shows that connecting with patients makes physicians happier and more fulfilled.”1
"That human connection — and specifically a compassionate connection — can actually build resilience and resistance to burnout."1
Could connecting with patients makes physicians happier and more fulfilled? Please join the conversation in the comments below. #LymeConversations
1. Does Taking Time For Compassion Make Doctors Better At Their Jobs? from NPR at www.npr.org/sections/health-shots/2019/04/26/717272708/does-taking-time-for-compassion-make-docto... last accessed 4/28/19.
Ues of course!!!! First, I would not had to seek for 25 years. And then it is the fighting of being heard together with all the explaining and lies while being my own doctor. Oh my. Such a stressful environment! Not good for the healing process!
Interesting. It seems there are quite a few flaws in our medical schools based on unsupported thinking.
"Medical schools often warn students not to get too close to patients," No wonder Western medicine is awful.
Love this and YES!!
Has Lyme disease left you in angst?
Lyme disease patients have been left in angst since 1990 when doctors at Tufts University School of Medicine described poor outcome after antibiotic treatment.1
Logigian and colleagues write:
“The majority improved [two thirds], but the outcome was seldom complete.”
''Six months after treatment, more than one-third of the patients either had relapsed or were no better.”
“The likely reason for relapse is failure to eradicate the spirochete completely with a two-week course of intravenous ceftriaxone therapy.”
Some Lyme disease patients are still sick.
Has Lyme disease left you in angst? 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.
Hi I had a positive babesia tilter 4/19. I am still having a lot of joint pain, headaches, nausea, fever, and extreme fatigue. I just had bloodwork done again and the babesia is still elevated, it actually doubled. My platelets were also elevated at 407 and monocytes 959 12.3%. My doctor said since he already treated me I do not need further treatment.
sadly Drs are too scared to break protocol of the mainstream...Angst is an understatement. Most of us at one stage or another have felt death creeping in. Its frightening. Without a vision the people perish, Most of us loose our vision to keep fighting. the cost and tole is overhelming.
Dr. Cameron, I have persistent, debilitating skin ailments on my hands and arms. At best, it is tolerable, but never remedies all the way. Right now I can hardly use my hands. My arms are flaming red and weeping. Other skin areas affected as well. Might this be a Lyme related skin disorder? I have been to 3 dermatologists and have not been cured.
STILL ON STRUCTURED SILVER by BEYOND SILVER. FOLLOWING PROTOCOLS. ..STEADY IMPROVEMENT. ..BUT THE NECESSARY ""RELAPSES" AFTER DOSAGE ADJUSTMENTS ARE VERY DIFFICULT TO ENDURE. I PERSIST AS THERE IS NO OTHER OPTION FOR ME. 👽👽👽💚💚💚💛💛💛💋
So, a highly regarded university with a medical school reported the obvious about undertreating Lyme, and even they were completely ignored. What does it take to hold these self-appointed gods-for life of Medicine accountable for their malpractice? How did they ever get so much power?
This is NOT a disease according to CROOKED Medicare doctors. #pillpushers
Joan in New Zealand today I choose to live but everything is saying the opposite! Angst and fear of not making it to the next hour. Bedridden for 30 days vomiting not eating infections in bladder and chest. Not walking and seizure like episodes for seven years once I try and detox of any kind. No medical help at all. Yes Severe Angst.
Hmmm, angst? I have completely given up all treatments/ supplements/ searching for answers and now.....after I have lost my gallbladder, uterus and both breasts......I have liver disease.......I HAVE THROWN IN THE TOWEL. I AM WAITING TO DIE as I do not even have the energy to take my dogs out to pee. So....angst? Yeah, I guess.
In this category myself, we need a better next chapter.
Yep.
