Lyme Disease Science Conversations:
Facebook Conversations

Conversations on Facebook with a leading Lyme disease expert, Dr. Daniel Cameron, about the latest discoveries and advancements in Lyme disease and associated illnesses.

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3 weeks ago

Dr. Daniel 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
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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

Comment on Facebook

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.

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1 month ago

Dr. Daniel Cameron

What is on your Lyme disease wish list? #LymeConversations ... See MoreSee Less

What is on your Lyme disease wish list? #LymeConversations

Comment on Facebook

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

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. 😷💞💚

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!

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