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.❤️
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. 😉
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
🤣🤣🤣 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
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
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... See MoreSee Less
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 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.
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 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.
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 media’s interest in celebrities appears to encourage the media’s attention to cases. I will soon be launching an Inside Lyme Podcast series focused on cases. #LymeConversations... See MoreSee Less
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.
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... See MoreSee Less
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 🤷🏻♂️
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! 👽👽👽💚💚💚
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
Thank you sooo .. much Justin Bieber . MANY LYME SUFFERERS HERE IN CANADA 👽💚 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. 💚💋
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 Justin❤️🙏🏻
Wish him the Best as my son and I both have battled Lyme. 🙏💚
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. 💚
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. 😢
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?
"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 💚
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 MaryJo🌹
This may be conspiracy minded, but I’m starting to think they’re dropping it down from chemtrails
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.
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...
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 😡. I told her she needs to start listening to her patients and believing them. Thank you Dr Cameron for believing me and treating me 🙏
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 😡. Now I live with the chronic results. 😢
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.
“Dr. 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.” writes Mr. Navarro.
I had an opportunity to discuss Lyme disease before a new audience.
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 🙏
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 🇦🇺 to recognise tick borne diseases and promote testing and treatment - to stop suspending doctors and denying our illness exists