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.
Everyone with Lyme disease needs support, even celebrities. Are you getting the support you need? #LymeConversations
How Gigi Hadid’s Family Has Helped Justin Bieber With Lyme Disease
screenrant.com
Bieber's wife Hailey is very close with both Gigi and Bella.I think it's important that we Lymies aren't bitter or jaded by the rich who also get Lyme. Yes, they have money and don't have to worry at all, or as much, about the cost of treatment, but they are still suffering with the same awful, horrible disease as we are suffering with and they need support, love, understanding, and guidance as well. I'm happy that the Hadid's have helped him. I wish him well and hope he can recover and live a good healthy life.
I’d be so lost without my other Lyme friends. We try to support each other as we are able, and it’s so important to have people in your life who truly understand this disease and the often ridiculous life you are living because of it. Love to all of the fellow Warriors who face this great battle each and every day.β€οΈ
Our internal medicine docs need to read this. I’ve requested re-testing. Two classic bullseyes over the last 15 years & treated first for MRSA and then correctly dx. 2nd bullseye i went right to ID doc...Aches and pains, swollen joints constantly the past 4 years & requested titers from IM doc. Answer was NO. I was Just treated with 10 days of doxycycline for a Cat bite and am finally free of aches ad pains. No doubt my Cat was helping me...that’s a whole other story. π
I hope he gets well but for those of us not multi millionaires, with every possible treatment available, it’s hard. Luckily, my husband supports me always and my GP has been on my side doing all he can. Sadly, the infectious disease specialists are a joke!
No lymies do not get the support they need... ever! Unless you have millions of dollars like a celebrity who can afford the treatment and the support.... you're just on your own.
There are two types of support. The finical one is not being addressed.
Its nice to be able to afford treatment amd not struggle where the money will comefrom to pay.. yeah everyone needs support but how about action to help all that suffer too!!!
Not all the time. Trying to get treatment makes a person go broke and the decent doctors do not take insurance
π€£π€£π€£ no, most of us don’t get the support we need
I'm surprised they haven't called me!!!
Not at ALL. In any way, shape or form....!
Alan Clark I have hope mom will talk to this doctor instead lying about being willing these past 4 years ....I have hope too Alan
Oh brother
thats sweet. im sure justin needed help. maybe they could help me? no income, no health. im sure justin needsit just as much, but?
Why don't they help poor Lymie folks? Why just him... I'll tell u why... Publicity
Ellen Kraft
Katharine AllentuckMitch GreenwaldJovi Federici
No
No!
How Gigi Hadid’s Family Has Helped Justin Bieber With Lyme Disease • BY EBONY MARCH • JAN 20, 2020 screenrant.com/gigi-hadid-family-helped-justin-bieber-lyme-disease/?fbclid=IwAR0qsr2nHcZ1FSROYnyi... Justin Bieber is suffering from Lyme disease and Gigi Hadid and her family are helping him out thanks to their first-hand knowledge about the disease. Gigi Hadid’s family is helping Justin Bieber with his Lyme disease. • The 25-year-old musician recently revealed his diagnosis and plans to chronicle his struggles in a new docu-series which is slated to debut on YouTube titled Justin Bieber: Seasons. On January 8th, Justin Bieber posted a lengthy admission on Instagram that he was battling the illness after multiple fans and trolls commented that he looked bad, or like he was taking illegal drugs. • The "Yummy" singer also went on to explain that he has been living with chronic mononucleosis, which affects the skin, brain function, energy, and patient's overall health. • Bieber's confession included an explanation for why he was putting together his 10-part docu-series called, Justin Bieber: Seasons as well as speaking out about his health. • His goal is to encourage other people with the same issues to hang in there and not give up. The former The Real Housewives of Beverly Hills star, Yolanda Hadid, as well as her model son Omar Hadid and her supermodel daughter Bella Hadid had all been diagnosed with the tick-borne illness. • According to a source (via People), "Hailey is very close with both Gigi and Bella." • The insider explained, "They have been very helpful in guiding and supporting Justin’s Lyme disease. • From their mom’s struggles, they have shared a lot of valuable information. • It’s all helped Justin tremendously." Yolanda lost her marriage to David Foster, and even left the show - in part - due to the taxing nature of the illness and its harmful repercussions on her mind, body, and spirit. • For those living with Lyme disease, it leads to fevers, fatigue and muscle pain. • A source told People magazine that Justin had been feeling bad for a while. • He even canceled a tour in 2017 to focus on his wellness. • With new wife Hailey by his side, Justin is working to learn more about Lyme disease and fight his way back to feeling better. Bieber coming clean about his health troubles is a wonderful tool for teaching people to be more compassionate online and to not judge someone based on their appearance. • As there's no way of knowing what they may be battling in secret. Hailey Bieber should also be praised for her vigilance in helping her husband through a tough time. • Finding a support system in the Hadids, who have been extremely vocal about Lyme disease and their struggles with it, demonstrates Hailey's wisdom and compassionate nature. • Hopefully, Justin Bieber: Seasons will be a way to continue to educate the public on this debilitating disease. Justin Bieber: Seasons premieres January 27th at 1pm EST on YouTube. Source: People About The Author • Ebony March is a contributing writer at Screen Rant. • Her career in entertainment journalism began in 2007 as a film and music reviewer. • Before joining Screen Rant's Reality TV beat in 2019, Ebony was a contributor at Guitar World and Intent (now Intent Blog). • She freelanced as a digital news producer at KABC-TV in Los Angeles and was a freelance producer at the Los Angeles Times. • Ebony's interest in social activism, music, and pop culture led to appearances on 60 Minutes, MTV's Subterranean and 12 Angry Viewers, as well as Comedy Central's Beat the Geeks. • In her spare time, you'll find Ebony poring over interior design feeds on Pinterest, or obsessively binge-watching episodes of Saturday Night Live. • She's also an avid cook and player of classic 8-bit video games like Galaga and Ms. Pacman. • Follow Ebony on Twitter. Copyright © 2020 ScreenRant.com
I left my family and friends in Minnesota in 1982 for New York for a career in Geriatrics. Instead, I ended up with career treating Lyme disease patients in Mt. Kisco, New York.
It breaks my heart to hear when old family and friends from Minnesota come down with Lyme disease. Here is another Minnesota story. Lisa Najarian, wife of former NFL linebacker Pete Najarian shares her 16-year journey. #LymeConversations
Twin Cities foundation applauds new effort to improve Lyme disease testing, treatment
kstp.com
Because of her long battle with undiagnosed Lyme disease, Lisa and Pete Najarian created the Twin Cities Lyme Foundation to help connect people with an assessment, testing and a Lyme-literate doctor ....So sorry you are no longer here. We need a lot of help. But very appreciative of your work, and the info you post that helps us all. !!!
I didn’t know that money distributed would be through grants. I didn’t read that letter thoroughly. I will. If there is other documentation that you know of, please let me know. I’m a fundraiser and have worked on federal grants.
Thank you for all you do.
If you can, please share info on funding opportunities when you get it. The ins and outs of federal grants are many and I imagine that will be the case with these. I use Messenger if you would like more privacy. Thank you.
I’m grateful you did. π
I reviewed the original paper in Pediatrics. Correction. Both babies were 6 weeks old.
The baby with Babesia required a blood transfusion for severe anemia. The blood showed parasites consistent with the parasite Babesia. The mother did not show evidence of Babesia. The platelets were also quite low. Both babies are doing well after treatment.
Dr. Andrew Handel is a pediatrician and infectious disease fellow at Stony Brook Children's Hospital in Stony Brook writes Colangelo in Newsday.com.
I will discuss these two cases in more detail in an Inside Lyme Podcast series. #LymeConversations
Long Island babies had rare illnesses due to tick bites
www.newsday.com
Like most toddlers, Carla Trinidad is always on the move. The 16-month-old climbs on her mother, bounds across a couch and peers over the side in pursuit of treasure in her Southampton home. Itβs ha...It is too bad we have to worry about Lyme disease and Babesia in 6 weeks olds.
Do you mean both “babies” are now 6/years old? The one thing that is now impressed on me, after knowing I have Lyme for about 5 months, is that people are often bitten by nymphs which are very, very small. I may never know where I got it. I had symptoms for almost a year before being diagnosed and the tick I did find was a lone star, that when it was tested, didn’t test positive for Lyme even though I did.
Rare cases of tick-borne illnesses on babies found on Long Island after bites By Lisa L. Colangelo lisa.colangelo@newsday.com Updated January 18, 2020 3:00 AM' tinyurl.com/y3xnppoy om bringing big crowds — and a possible ban Lyme disease in common in children, but not in newborns. • On Jan. 13, Dr. Andrew Handel, a pediatrician and infectious disease fellow at Stony Brook Children’s Hospital, talked about a paper he co-authored on two recent cases on newborns with tick-related diseases. • (Credit: Randee Daddona) Like most toddlers, Carla Trinidad is always on the move. • The 16-month-old climbs on her mother, bounds across a couch and peers over the side in pursuit of treasure in her Southampton home. • It’s hard to imagine this curious little girl as a one-month-old infant fighting off Lyme disease, its distinctive bull's-eye rash marring her face and chest. “I was surprised, she was so little,” said Janeth Guaman, Carla’s mother. • “I thought it was just something on her skin.” Dr. Andrew Handel, a pediatrician and infectious disease fellow at Stony Brook Children's Hospital in Stony Brook, said the tick-borne illnesses found on two infants on Long Island are "unusual" and point to the infection risks associated with tick bites. • He was lead author of the article documenting those cases. Credit: Randee Daddona Experts at Stony Brook Children’s Hospital believe Carla, who has fully recovered, was one of the first documented cases of an infant contracting Lyme disease after being bit by a tick in the United States. Around the same time in the summer of 2018, the hospital treated a six-week-old baby boy for babesiosis, a potentially severe disease transmitted by a tick bite. • He, too, was from Long Island. The cases were so rare that doctors at Stony Brook Children’s Hospital and Hampton Community Healthcare chronicled them in the medical journal Pediatrics, published last month. • “Seeing infections in this unusual population, babies who are so young, really underscores the extent of the spread of ticks and infections that they carry,” said Dr. Andrew Handel, a pediatrician and infectious disease fellow at Stony Brook Children’s Hospital, who helped treat Carla and is the lead author of the article. • Doctors believe the cases emerged on Long Island because the area — along with southern Connecticut — is the historic epicenter of Lyme disease. Long Islanders are all too familiar with ticks and the diseases they spread. • Children and adults alike are urged to check their clothes and bodies for ticks after a hike, play date in a grassy field and other outdoor activities. While summer is prime tick season, the hearty parasites are extending their stays. Janeth Guaman, 20, sits with her daughter, Carla Trinidad, 1 year, 6 months in her home in Southampton on Monday. • Her daughter contracted a disease after a tick bite at one month old. Credit: Randee Daddona “With the warmer winters and less snow each year, the tick season has been expanding,” Handel said. • “There are shorter cold periods between the summers, so we are seeing tick infections later in the winter and starting earlier in the spring.” Lyme disease, which the U.S. Centers for Disease Control and Prevention says is the most common disease spread by mosquitoes, ticks and fleas that spread pathogens, has symptoms that include headaches, fatigue and fever. • If it is not treated, the disease can cause infection in a person’s joints, heart and nervous system. Babesiosis, a disease caused by parasites that infect red blood cells, is less common but also can be severe if not treated. • People who contract it may experience flu-like symptoms including fever, chills and headaches. The state Health Department estimates there were 2,966 cases of Lyme disease in Suffolk County between 2014 and 2018, according to data on the Suffolk County government website. And the U.S. Centers for Disease Control and Prevention said there were 2,446 confirmed cases and 1,192 probable cases of Lyme disease in New York State in 2018. Of the 23,558 confirmed Lyme disease cases in the United States in 2018, 986 cases were in children 4 years of age and younger, according to the CDC. But Janeth Guaman didn’t think her daughter, who wasn’t even old enough to crawl, was at risk. • Then her mother found a tick in Carla’s thick brown hair. She took Carla to Dr. Harriet Hellman at Hampton Community Healthcare, who evaluated her symptoms of fever and rash before referring them to Stony Brook Children’s Hospital. • “I was worried,” Guaman said. • “They told me she had Lyme disease or meningitis.” Guaman said she spent two weeks at the hospital with Carla in August 2018, while the infant received treatment, including a course of antibiotics. No one is sure how Carla or the baby boy with babesiosis came into contact with ticks, but the doctors believe an adult or family pet inadvertently brought them into the homes. “I think in general, there’s a need for more research into Lyme disease and tick-borne diseases all around,” said Dr. Saul Hymes, a pediatric infectious disease specialist at Stony Brook Children’s Hospital. • He treated Carla and wrote the journal article with Handel and Hellman. • “Selfishly, I’m a pediatrician, so I really want to see more research into cases involving young kids.” Hymes said babies contract certain diseases, like babesiosis, in utero through their mothers. • “These are among only a handful of reported cases in the medical literature that babesiosis and Lyme disease have been transmitted by a tick bite to an infant," he said. Handel and Hymes said they don’t want these cases to cause parents of newborns to panic, but make sure checking for ticks on clothes and skin is a regular habit. Guaman said she is determined to make sure Carla doesn't get another illness from a tick bite. "I check her all the time," she said. "And I just don't take her outside a lot." BEWARE OF TICKS • Ticks are most active between April and September, but you can encounter ticks year-round. Here are some tips to avoid tick bites: • Ticks live in grassy, brushy and wooded areas. • • If you are walking or hiking, stay in the center of trails. • • Use insect repellent on your clothing as well as exposed skin. • • Since ticks can be carried into the house on clothing, put dry clothing into a dryer on high heat for 10 minutes. • Wet clothing should be dried completely or washed in hot water and then dried. • • Ticks can ride into the home on clothing and pets. • • Check pets, coats, backpacks and other items for ticks after you have been outdoors. SOURCE: U.S. Centers for Disease Control and Prevention By Lisa L. Colangelolisa.colangelo@newsday.com Copyright © 2020 Newsday. All rights reserved.
There are a growing number of Lyme disease cases being described in the literature. DailyMail.com reported on a case of Lyme aortitis in a 72-year-old man in the British Medical Journal (BMJ) Case Reports. There will likely be doctors who dismiss the significance of the case as it can be hard to establish causality.
The mediaβs interest in celebrities appears to encourage the mediaβs attention to cases. I will soon be launching an Inside Lyme Podcast series focused on cases. #LymeConversations
Lyme disease patient almost suffered a ruptured artery in world-first
www.dailymail.co.uk
The pensioner, from Castelo Branco, Portugal, went to hospital with excruciating pains in his chest and extremely low blood pressure. Justin Bieber announced he had the illness last week.I’m so happy that you will be doing a podcast! Keep up the amazing work, Dr. Cameron!
When you refers to Lyme’s disease, can you confirm if you only talk about Borellia Burgdorferi... or does it include other strains or even Bartonella as well, just wondered?
I think this is the flaw with the medical system in the US if its not defined by the government and it hurts insurance companies then if you dont do vigilance for urself ur left for dead. I thought my son had lyme bec of a bite he obtained from Asia and Dr Camerons office is overly helpful compassionate and understanding I mean his staff Jones is. When i tell your typical doctors and my sons pedia about this they look at me like a crazy person.
What about B. miyamotoi? Supposedly there are only 4 documented cases in the US, and I must be the 5th undocumented.
Wonder if there are any immunosuppressive..... seronegative chronic neurological lyme cases (post sepsis) that are documented and in the Literature?
I didn’t see anything about how long he’d had it before that happened. Thanks.
f
Justin Bieber joins a growing list of celebrities sharing their stories. I hope their stories will encourage anyone who is still sick to seek treatment. Do you know anyone who has put off treatment? #LymeConversations
10 Celebs Who Have Opened Up About Living With Lyme Disease
www.harpersbazaararabia.com
From Justin Bieber who recently admitted to having Lyme, to the Hadids - here are some of the A-listers who suffer from this mysterious tick-borne disease...obviously we know people who have put off treatment. also, likeme= those that have NO MONEY to treat or visit a doctor anymore from treating at all. no one is like justin bieber, or another celebrity. we're pretty shallow if we think me being sick- or you being sick looks ANYTHING like a millionaire being sick. nutso the way the media wants us to think we need to relate to someone unrelatable to get it.
Why is it you see these common words with Lyme, “mysterious, misdiagnosed, invisible”. It’s a disease! The CDC and doctors have to get on board and realize this is a chronic condition that should be treated aggressively! Damn, this pisses me off!!!!!! I’ve had to pay thousands of dollars for testing and treatment. This is RIDICULOUS!
I think this article shows that even money and fame don’t prevent misdiagnosis and delayed treatment. Once diagnosed, at least they have a fighting chance unlike so many patients.
Tired of hearing in these articles that Lyme can be CURED if treated in the early stages. I was bit in the 90's, antibiotics started immediately for 3 months, seemed taken care of - hah! relapses still happening. It's a life long battle between your immune system and Lyme.
Awareness is nice but all this does is show the inequality of receiving care for poor vs rich and famous. Everyone should have equal access to heal.
Dear Martha, I hope this diagnosis helps many others.
Alan Clark why won’t mom Show up to see this doc after offering to work with us? Kathy offered to. Is she lying and that’s why I’m suffering more than I deserve to? Based on her email offering me help do you know why she isn’t returning my calls. The people at ER want her to stop dumping me on them because she can’t get to therapy herself . Make sense? Yes I have neurological issues- so why does that make me a dog to Andy and Kathy instead of human being with disability rights??? Kristina Powell
Where in the “heck” is the research money? The CDC needs to stop blocking the real doctors & researchers on the subject of Lyme. They (CDC) promote more disinformation and misunderstandings than help. My physician, a young doc, took her medical boards last year. On the test, there was a question is Lyme real, correct answer ‘No’. New York University. My daughter is dying from Lyme, so I blame the greed of the CDC. This is so crazy and screwed up.
Yes, but it’s finances that dictate that.
"Opened up about"... hah, like it's shameful or something.
There is no cure! Justin Bieber can buy treatment but he can't buy a cure. It's that simple.
The more celebs that get, the more press is received and hence more funding and research to find a cure? I sure hope so because current options and healthcare situation is ludicrous
you're too expensive. donate antibiotics they work. stop the bullshit.
The physicians that these celebrities receive treatment from why is that never made known to us?
If you don’t believe you can be cured, you won’t be π€·π»βοΈ
I wonder if doctors are tell him that everything it’s in his head.
Here's an article with even more celebs with Lyme. There are so many now it's hard to make the "top 10". Is great this is in the media even though they have unlimited resources to treat Lyme and co infections.... and the aftermath that often comes from being misdiagnosed for months, years even decades sometimes. Ten years or more ago I was wishing there were more celebs with Lyme. Not that I wish anyone to suffer like this, but we need exposure! People need to realize how widespread this and how devastating it is! Now it's here. It was only a matter of time before this pandemic started to spread to celebrities. www.pinterest.ca/LymeChallenge/celebrities-and-public-figures-with-lyme-disease-l/
Agreed Sharon Rader. Lyme and other tick diseases can go onto remission. That's it. That's like saying "Sure you can cure HIV with some pills". Doesn't happen. The flip side is we are making progress using herbal remedies, nutrition and other modalities to keep Lyme and tick disease at bay. Plus we are no longer silenced. Our voices are being heard. Others who have suffered without a diagnosis for their symptoms are now being treated and have hope. We have each other for support and I'm sure in the 90s and 2000s that just was not the case. Keep fighting!
REALLY FUCKIN SICK OF IT! π½π½π½πππ
People who put off treatment usually can’t afford it.
Wonder what treatment plans they followed.
I have to get back to treatment. Diagnosed in 2006 (Canada)- contracted Lyme and several co infections in July 2002 for certain, possibly earlier. I crawled my way back after the acute phase which lasted several years. Since have been left with chronic health issues that weren't there before. I have used "alternative" treatments mainly due to finances. Lyme has cost me a million approx. Yet I hardly spent anything on treatment. Wish I had have spent more.............So happy to see celebs and people with "influence" telling their story. Not easy to go public no matter who you are. My daughter is doing her masters in creative non-fiction writing about her perspective being raised in a single parent family where her mom and older brother both lived through Lyme. She was healthy and her take on this is quite interesting. Won't be published for a couple of more years. Is a huge undertaking but she is doing it! So happy she is writing this story. I find it a challenge to be heard by many and don't have the energy to keep talking about the subject. After the first decade it get's a bit much............. Never give up! #LymeSurvivor
Another celebrity shares his story. I pray that he gets better soon. #LymeConversations
Justin Bieber reveals he's battling Lyme disease
www.cnn.com
Justin Bieber has revealed he was recently diagnosed with Lyme disease, an infection caused by bacteria commonly carried by ticks.Thank you sooo .. much Justin Bieber . MANY LYME SUFFERERS HERE IN CANADA π½π DESPITE SHANIA AVRIL ETC. THE MAJORITY OF US ARE NOT ACKNOWLEDGED, BELIEVED OR EVEN TESTED, TREATED, OR GIVEN HOPE! I know what's up... but can't get treated. Docs won't even listen...tho I am sent to internists etc. for SPECIALIST consultations who get $$$for the visit, they tell me they don't know how to find out how to get me tested for chronic long term Lyme! I've had the Igenex. ..pos could go to paid alternative practitioners. .. but am broke now. Trying "Beyond Silver" liquid structured silver to reset cells. I'm a Believer. Thanks. I know the struggle.
So sad. I’m interested to see his docuseries. Any attention on Lyme disease is a good thing. Praying for his recovery along with all of us.
I thank Dr Cameron for his work and this post. ππ
The constant refrains about prayer do seem disingenuous. How much time does one take to pray after they say that? How often do they pray? It would matter more to me if they prayed daily for everyone with Lyme or all the people in the world affected by natural disasters this year. Form a prayer circle, conduct it virtually. If it helps no one else, the idea of people stopping and praying at the same time may change those who pray, or meditate.
Yes we need his VOiCE to educate this country and for doctors (not Dr. Cameron)to recognize & treat this horrible disease. Please help us Justinβ€οΈππ»
Wish him the Best as my son and I both have battled Lyme. ππ
It will be a growing and learning experience for him. Maybe he will be able to get his life in order.
So sad, maybe with all of his clout he can be a huge influence in advocating for better healthcare for those that suffer from this dreadful disease.
I wish you a quick and complete recovery Lyme brought me to my knees physically and mentally at 55 an awful place to be. Take care of yourself Justin, and thanks for speaking out! The Lyme community supports you!
Andrea Kent Sorry I can't respond under your comment, must be a facebook bug. Your comment was this: "Why is it more important that celebrities get proper treatment and get well than us unknowns? Why do they get prayed for by strangers when most of us are harassed and ridiculed?" My response - It looks like he got ridiculed too. People said he was on meth and assumed the worst about him. It's hard for people who haven't been in the entertainment business to appreciate the kind of negative attention these people receive. There's a reason so many celebs and rockstars kill themselves, or die of drug overdoses. Personally, I wish him the best and I'm thankful he's using his story to bring attention to the issue.
I’m so very sorry he’s endured the pain so many others have felt. But I am hoping more are awakened by his story. I look forward to watching his documentary with my 11-year-old Lyme warrior daughter. π
It's sad that he's got it but any celebs that have mean more info and action for the Lyme community.
Welcome into the not-so-prestigious club Justin. π’
He will, he has money!
Why is it more important that celebrities get proper treatment and get well than us unknowns? Why do they get prayed for by strangers when most of us are harassed and ridiculed?
Bless him
"While a lot of people kept saying Justin Bieber looks like s***, on meth etc. they failed to realize I've been recently diagnosed with Lyme disease, not only that but had a serious case of chronic mono which affected my, skin, brain function, energy, and overall health," Bieber wrote." This is sad. It's bad enough people with lyme have to suffer so much, but the misunderstanding and stigmatization is insult to injury, not okay,
Sorry you have to go through this Justin my daughter has suffered as well....but is currently in remission after 12 years of battling. My best to you.
Have had it for years got it here in maine it comes ang gose hey from friendship maine
I wish him well π
Poor fella! I will pray for him!
Wow, sorry to hear of his sickness. His voice for youth will be priceless, moving Lyme Awareness forward. Hopefully, now that he knows he will access appropriate care. Not a easy task in this FAILURE TO TREAT climate.
If you suspect neurologic Lymes, even if you have positive blood test results, so get a lumbar puncture (spinal tap). A CT Scan looking for lesions in the basal ganglia helps too. We battled Lyme for three years and were finally diagnosed with Parkinsonism MSA (Multiple System Atrophy). Progressive and fatal. RIP MaryJoπΉ
This may be conspiracy minded, but I’m starting to think they’re dropping it down from chemtrails
Awww π
In 2019, #LymeConversations video posts covered topics ranging from psychiatric presentations, early signs of Lyme disease, sensory issues, childhood behavioral symptoms, treatment approaches, testing challenges, chronic manifestations to the dangers of co-infections and newly emerging tick-borne diseases.
Here are a list of the most popular video blogs of 2019.
Top 10 video posts on Lyme disease for 2019 - Daniel Cameron, MD, MPH
danielcameronmd.com
Β Following are the top 10 video posts for 2019. 1) A growing number of doctors are treating Lyme disease for longer than 21 days.Tseng and colleagues described 488 physicians who treated for more tha...Thank Youuuuu Dr. Cameron
Doctors have waited for a positive Lyme disease test.
In some cases, the Lyme disease test may never become positive.
Lyme disease tests may also remain negative if antibiotics or steroids are prescribed.
Waiting for a positive Lyme disease test may delay treatment.
Do you know anyone whose treatment was delayed while waiting for a positive test? #LymeConversations
Me! Went to ER with facial palsy and bulls eye rash took a lyme test and they sent me home to wait for my results without precautions taken.
I tested positive with 5 bands which is what the cdc recommends for treatment but it was considered an old infection and can’t find a doctor that would treat me.
Both my daughters were about 4 yrs delayed before proper care. They both had ticks that I removed (so no mystery there) & endless symptoms & suffering. And many negative labs. It was horrible. Clinical diagnosis is so important. Not many Drs understand this & it’s so important to see a lyme literate specialist. The minute you are suspicious it could be lyme immediately get to a lyme dr. I wish I would have been more quick to honor my intuition.
A couple of bands was positive enough for me! I got started self treating with herbals. I did however consult with an LLMD, one who made a clinical diagnosis based on my long history. I've been packing something that came from the first ticks I remember mom pulling off me, when I was four. I'm now 62 and my LLMD tells me I'm the only one of her patients that seems to be getting better. There's a problem though, nobody beats Chronos!
My treatment was delayed for 8 months until a positive lyme Lyme test came! I was so very sick by the time the test came positive
How about my treatment was delayed with a positive test because my pcp said your test in 2016 was positive your tired now because it’s your thyroid begging her to test me again she said you’ll always have a positive test! I went back to here this week and showed her my new medicine and she said you must have been reinfected π‘. I told her she needs to start listening to her patients and believing them. Thank you Dr Cameron for believing me and treating me π
My treatment was delayed because I wasn’t tested soon enough. It was assumed to be a Lupus flare and I was just prescribed more and more immunosuppressive medications.
More than two years delayed diagnoses until it was positive via spinal fluid and was diagnosed with meningoencephalitis caused by untreated Lyme and Babesia and given two weeks to live. LLMD in RBK saved my life when they sent me home to die.
I tested negative with ELISA and Western Blot a total of seven times over 25 years. If Dr. Cameron had not treated me with antibiotics based on my many clinical symptoms, I’m convinced I might’ve died
It took 4 years of many many many doctors basically telling me I was just getting older to I was crazy. putting me on various meds before I found a life saving natural path doctor. I now have chronic Lyme
Me. It took 3 western blots over the course of 6 months for me to get a positive. Even though my symptoms started as classic headaches, neck pain and joint pain, the test was negative, so no treatment. By the time the test was cdc positive I was bedridden with severe neurological symptoms. I’m not sure I’ll ever regain health. I can’t help but wonder what things would have been like if someone had just treated me based on symptoms early on.
My ELISA test at my PCP was positive, but my Western Blot test was negative. My PCP told me that I had a "false positive" & I didn't have Lyme Disease. I saved up & paid out of pocket to Igenex Labs in CA & I was found to be CDC positive for Lyme.
I had a classic expanding bullseye rash on my lower leg and within a couple of weeks could barely walk, lost all reflexes in that leg and had the Babinski response on the big toe and trigeminal neuralgia in face. Was sent to neurologist who tested me for Lyme and told me "good news, your Lyme test is negative, maybe your symptoms are to do with (slightly) raised blood sugar levels. I'm going to give you some steroids". It took me 4 years to get proper testing and diagnosis and by that time I had lesions in my brain, enlarged lymph nodes in my lungs and stomach, psychiatric involvement and much more. I often wonder how my life would be now if I'd been given some antibiotics for a few weeks, 5 years ago.
My daughter. The local doctors in Alabama refused do diagnose her period. Even though we had spent a week in NYC In the summer. Soon after she was sick with flulike symptoms and had a perfectly symmetrical bullseye rash on her neck. I sought treatment in Atlanta when she started presenting cardiac symptoms. She went from July to January without being treated. Damage was done. She’s still in treatment.
Me! And then after two years I was bitten again and finally got a bullseye. They finally gave me doxycycline. And found several cdc positive coinfections. But then they still wouldn’t treat because I “had doxycycline and was cured” something else was making me sick but they didn’t know what. Eventually I found Dr. Cameron. Luckily.
My daughter...went through Nationwide Children's Hospital Columbus and multiple specialists before I read an article on here and sought out an LLMD.
Yes my family of 3 - 2 tests came back positive, 1 negitive. We decided to share our 3 months of doxy amoungst ourselves. Took the edge off Lyme somewhat
I was literally told, “Let me play doctor. I will tell you what tests you need. Ok?” I’ve been ill for 32 years and counting because my doctor was ignorant and did not want to hear me. I knew. I absolutely knew what was wrong with me. Crippling vertigo, ocular distortion, horrid pain. It breaks my heart how it changed my life so entirely. I had a craniotomy to sever left vestibular nerve in brain so I could walk again after three years of inability. Knowing antibiotics could have spared me this makes me so very sad. I went deaf in left ear due to the surgery. I’m not angry anymore — just so sad and disgusted that a doctor was too threatened by my insight that he opted to neglect my desperate needs.
Ya how about I almost died in the hospital in Dec 2002....admitted with Meningitis, encephalomyelitis, transverse myelitis, in a wake coma, paralyzed from my waist down , on a resp
My doctor told me I did not have Lyme even though my tests were positive.
Yes. Me. (Not by you. By my PCP, who follows the CDC's recommendations which are of course quite inadequate.)
What about misdiagnosed with fibromyalgia & CFIFS and not even tested for Lyme disease for 7 years. Finally diagnosed in 2004 & then insurance paid for only one month of IV antibiotics.
Me, too! 4 negative tests, finally, one good dr, one correct test! (I went to dr cameron years ago, thank you!)
3 “negative” tests under CDC standards in a year π‘. Now I live with the chronic results. π’
Yes, it took 6 weeks because the did first test too soon. I made them take a seond test 8nweeks after the first one . Possitive foe spotted fever. I was covered with tiny lyme spots head to toe.
What happens when a podcaster gets Lyme disease? Joseph Navarro called me for a podcast. He is the host of Burn it Nutrition Podcast.
βDr. Daniel Cameron goes into why Lyme disease is spreading. Learn the history of this disease & how to prevent it. The symptoms to look for and ways to treat it. Long term effect of Lyme disease & Antibiotics Part 2 of a 2 part series - My battle with Lyme disease and everything I learned to heal from it.β writes Mr. Navarro.
I had an opportunity to discuss Lyme disease before a new audience.
The Q and A starts at 7 minutes 20 seconds. What do you think? #LymeConversations
podcasts.apple.com
βShow Burn it Nutrition Podcast, Ep Ep79: Lyme Disease w/Dr. Daniel Cameron | Symptoms, Treatment & Prevention - 2019λ 12μ 18μΌI cannot imagine any doctor who wants his patients to be sick so he can make more money. I can see where a doctor is repressed by a medical society (IDSA?) or the government.
What is on your Lyme disease wish list? #LymeConversations
Health insurance coverage for medical treatment. More knowledge and education for illiteracy on Lyme disease, co infections and treatment options so misdiagnosis is rare. I was given a lifelong sentence like so many others. I'm no longer bitter however I become angry when people are not given proper treatment. I am a Registered Nurse and see many misdiagnosed or given what is considered standard medications/dosage. I dread to know what the future holds.
That Chronic Lyme is accepted, properly defined, and PCPs will be trained to help their patients effectively. I also wish LLMDs would accept insurance AND be required to follow verified and accepted standards of care.
To have all Doctors educated in what is presently known about Lyme, which is NOT Enough! For family amd friends to realize that we are SUFFERING AND ITS REAL! Most of all, to actually have a treatment that WORKS! Antibiotics are not the answer, just a temp fix for a life of sickness.
• Strong, accurate, inexpensive & swift diagnostic tools for both acute and chronic Lyme and other TBDs • inexpensive, effective, quick treatment • insurance coverage for LD • innovative and highly effective preventive measures • an honest assessment of the vast impacts of LD on children, elderly, chronically ill
a new PT mine who was keeping me functional quit with no notice , she really understood lyme , i went to another and they caused the facet joint in my back to go out i went from functional to bedbound....
I wish for Lyme treating physicians to supersize in volume globally
Finances enough to adequately see my LLMD, get needed labs, and get treatment without stress for all Lyme patients.
For my baby who’s going to be born in a few weeks to not have lyme or any of my co infections or MTHFR...been on Ceftin entire pregnancy so fingers crossed π
I need a doctor near me too. In all of South Jersey, it's mind boggling that there isn't even one in this endemic area.
For Australia π¦πΊ to recognise tick borne diseases and promote testing and treatment - to stop suspending doctors and denying our illness exists
To stop the consistent disrespect on this topic by the mainstream medical community. TB was not well understood in the last century, but these patients don't appear to be as mistreated as Lyme patients today. www.saratogian.com/news/national/mountain-village-embraces-its-legacy-as-cure-center-for-tb/artic...
A cure and preventative and to Feel healthy again
An affordable cure for sure ! More Lyme Literate mainstream medical professionals ! Better testing !
I just want my old self, my old life, back. A cure.
Nice to get laughed at. That was also on my list. Many thanks.
All the criminals that were involved in Lyme locked up. A new case definition. A cure.
Help with treatment costs.
That the depression and anxiety would go away. Also, that insurance would cover expenses for needed procedures.
The quality of life I had 8 years ago.
Not to be infected 31 yrs ago. To find a caring Dr. like you here in Canada. π·ππ
No chronic Lyme and no relapse
I want a cure for all of us and for those who will get bitten in the future.
Mimosa Pudica. I cannot buy it in New Zealand
A good, reliable, test.
Please someone gift us TRS ! me and my 8 month old will share it. We would love to try it. But can't afford it. DM us for address if you are interested in making this Christmas wish come true!
