Ever wondered why so many people with Lyme disease test negative, even with all the symptoms? Here's what I’ve discovered. 🧐
The standard Lyme test wasn’t designed for individual diagnosis—it was created for tracking Lyme in the population. Back in 1994, when they developed it, they left out crucial markers that could’ve caught more cases.
💡This means you can have all the symptoms and still test negative. It's a flaw in the system, and it’s something we NEED to talk about more.
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That happened to me....I was tested right away and the test results came back Neg for lyme and that is what I had....so I was not diagnosed till 1 year later. Then not given enough antibiotics......life was rough back then.....I call it the Long and Winding Road.
I tested positive in year 2. I’ve been tested several other times, negative. What I can’t understand is why an LLMD won’t treat a person unless they have a current, positive test result? I thought it was a clinical diagnosis. I very recently ran into this.
I didnt get tested for 4 years. I was at a thyroid doctor who recommended I see Dr. Sam Donta out of Boston. When I went to him, he diagnosed me with Lyme. My testing over the years has been on and off with positive results. Still have lots of symptoms 32 years later. Hard to find a doctor who will treat. Especially now since I am in the south. I have learned to live with feeling like death everyday.
It’s frustrating that multiple tests show multiple results. My daughter went from 7 positive bands to 4 to now negative but we can’t trust any of the results which makes treatment a test of blind faith.
They removed markers.
Have You Ever Been Afraid To Mention You have Lyme disease? You’re not alone! ... See MoreSee Less
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Yes, yes
Absolutely ! But I push on through and tell them about it. Surprised doc??? lol
😂
Could menopause be behind your symptoms, or is it something else? In my experience, symptoms often have a deeper explanation. ... See MoreSee Less
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I feel my depression symptoms are menopause. I just recently went back into remission from Bartonella without abx!!! I have never in my life dealt h with the feelings I have now Being in year 3 of menopause has me believing it’s indeed the cause
Several post-mortem studies have demonstrated the presence of Borrelia spirochetes in the brain and central nervous system of patients with a history of Lyme disease.
In this case report, investigators add to the growing evidence that Borrelia spirochete can reside in brain tissue even after prolonged antibiotic treatment.
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What does the test show borrelia spirochete in the brain?
PENICILLIN used to be used...especially for neurological disease. Treatment is however meant to be 2 weeks via IV. Good luck getting a doc on board with that.
Dr Cameron, I am currently out of an 8 year remission in this my 40th year battling Lyme, Bartonella and Babesia. Are there ways to safely reach Spirochetes in the brain? Hyperbaric oxygen? Light therapy?
So what’s the solution?
Hi doc, do you have videos talking about the gene variations MTHFR? Its link with Lyme and co-infections
Bartonella bacteria is even quicker in its gaining access to the CNS. I had my first neurological symptoms in 10 days after being bitten by a tick.
SO there is no way to get that bacteria out of the brain once it gets in there?
I kinda figured that and always wondered.
So sad
In early 2000s to 2005, we had a meeting in Harrisburg, Pennsylvania with pathologists. They were the ONLY group who believed what we were facing because they found the same thing. I invited one or two of my doctor friends (I think Harold Smith) was there, and some friends from local SSA who granted me disability benefits based upon Lyme disease.
Dr. Cameron do you recommend taking super liquid folate?
that's so sad, poor dude 🙁
Gracias Dr. Daniel Cameron 🙏🏼
Dr K thinks that Borrelia can enter the brain very quickly after an infected bite via the bloodstream 😣 That's why treatment that crosses the blood-brain barrier & good brain detox is a good idea.
B.brain barrier penetration antibiotics did you offer?
HOW do we rid the brain of Lyme spirochetes? Tried everything with Lyme specialist for the past 18 months with zero success.
Biophoton Light emitter with all the frequencies has been getting rid of it for YEARS..and you know that..no drugs needed
❓Can Lyme disease resolve on it’s own?
💡No, Lyme won’t fix itself. But with the right plan, you can get better!
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How to treat? Took 400 antibotics still cant walk that much. Back pain neck cracking. Sinisitus...
Yeah, early treatment 90% of us don’t have early treatment or chronically sick from it, but the problem is the symptoms you lifted are from Mold as well. Get rid of Mold. The Lyme disease goes into remission. It’s that simple. You don’t believe me. Look it up on your own.
If anybody treated Lyme disease for more than a year and has not gotten better, there’s something blocking it. There’s something else going on if it’s not Mold then Covid reactivated it and you still have Covid in your body. There’s a reason why you can’t get rid of it it’s not just because of your Dr and he’s stupid or you’ve taken the wrong drugs and they’re not working if you tried multiple things and you’re not getting better there’s something blocking it.
I’m done with this conversation because we’re just going back-and-forth you’re gonna believe what you believe I’m gonna believe what I believe that I go by you go by honestly I don’t know what you go by
That’s false you should do some more research, sir Lyme disease can cure on its own if you get rid of mold, the research is out there you just gotta look don’t make it about tun vision and Lyme disease needs to be killed killed killed
I think you’re stuck on something that you’re missing my point
Testing is all over the Internet but it’s not accurate. I don’t know where you’re getting these newfound tests that you think are 100% accurate if you have a test out there that you know is 1000% accurate. Please let me know.
Following
People have been to Dr. B Dr. Hinchy and they don’t get better. How do you explain that?
Many patients ask, "When can I get back to exercise?" With Lyme disease, even simple activities can feel exhausting.
One patient, a former marathon runner, started slow with walking and stretching. Over time, she regained strength. 💪
If you're eager to get moving again, start slow, listen to your body, and be kind to yourself. It’s all about pacing and balance.
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Yoga is good an swimming. 🙂
 PANS can turn a child's life upside down overnight—raging, OCD, anxiety—but what if Lyme is the hidden trigger? Too many kids go undiagnosed when infections are driving their symptoms. Testing could be the key to real recovery. #pans #pandasawareness #pansawareness #rage #LymeRage#OCD #TICs#Children #misdiagnosis #commonsenselyme #Lyme #lymedisease ... See MoreSee Less
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My son had this w strep. Thank God the doc finally gave in to a strep test even though his throat was not red. I had to beg! It was positive and Zithromax brought him back.
My Lymie father 70s 80s was out of his mind with Lyme OCD
Dr. Cameron what are your thoughts on the HPV vaccine?
Hello! I have my med. records that I am mailing to you tomorrow- your Mt. Kisco, NY office. 🙂 Just F.Y.I.
🔍 Why is Lyme disease so hard to diagnose?
The two-tier test we often rely on was designed for public health tracking, not individual diagnosis. Back in 1994, experts set out to standardize Lyme testing, but the criteria were influenced by concerns over a Lyme vaccine (which was later pulled). As a result, some important markers were left out—ones that could’ve caught more cases of Lyme.
💡This means many patients with clear symptoms still get negative test results. It’s a reminder of the challenges we face in diagnosing this complex disease.
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In other words they've made testing protocols cheap and unreliable so they can call it Anything else. Same as syphilis. Until PCR. With the use of PCR for C we saw 1000% increase in syphilis AND congenital syphilis cases. What changed? The testing. DNA doesn't lie. Unfortunately the fda has banned PCR testing ONLY for syphilis except for research. But gave away for free for C. WE were the research.
Since 1992 I have randomly tested positive and negative.
I tested positive in '94 one month before the diagnostic criteria was changed..im glad I was able to be tested before that! But even so even then it was only 3 weeks of antibiotics and that was it..if you still had symptoms you were referred to a rheumatologist, neurologist etc. and then at most you were told you have fibromyalgia.
It’s not a popularity contest, but if it were, you would win. ... See MoreSee Less
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I have 6 bands but 4 are very fuzzy grey and was told “they don’t count those” so I guess I gotta go back and sit with dweebs? 🥺
I had one of those. Showed I have it. Again, I have no proof bc I don't have the records from that doctor. Kick myself on the regular for not getting my records before he retired.
I only had one band showing reactive and I was sick as a dog and it is chronic at this point.
And?
Igg western blood negative
This study examines a family and their pets (including dogs and a rabbit) who had all been exposed to both fleas and ticks.
Both parents and their 3 children experienced neurologic symptoms over a 2-year period.
The father, both daughters, and one dog were seroreactive to multiple Bartonella spp. antigen.
The mother and both pet dogs were positive by DNA sequencing for Bartonella quintana.
A daughter, son, and one dog were positive for Bartonella henselae.
Both parents were co-infected with Babesia microti.
Droplet digital PCR supported potential infection with a Borrelia species in three family members.
Study provides case-based evidence supporting the role of stealth Babesia, Bartonella, and Borrelia pathogens as a cause or cofactor in neurological and neuropsychiatric symptoms.
Authors conclude "it is critical to document travel and vector exposure histories, symptoms, and pathology in pets and human patients, contact with rescued, wild, or feral animals and perform diagnostic testing that includes family members, pets, and vectors."
www.mdpi.com/2076-0817/14/2/110#
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A One Health Zoonotic Vector Borne Infectious Disease Family Outbreak Investigation
www.mdpi.com
This study reinforces the value of a One Health approach to infectious disease outbreak investigations. After the onset of neuropsychiatric symptoms in their son, our investigation focused on a family...1 CommentComment on Facebook
It is interesting. However, not all humans are effected the same as many live with both dogs and cats that may or may not sleep together and never show or have any thing physically effecting their health.
Ever felt like your symptoms were brushed aside? 🙄 One of my patients experienced fatigue, joint pain, and brain fog, but her questions about Lyme disease were dismissed over and over.
🧩 It took THREE years before anyone connected the dots. After the right treatment, she’s doing well now, but this is a reminder: Lyme deserves to be taken seriously from the start.
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My doctor is blaming my lupus for all of my symptoms…. But I’ve been living with lupus for over a decade and this is all different, all my new symptoms connect to lymes but I only tested positive for lymes igg western blot. I tested positive for that 6 months ago but just saw my results of that when I had gone to my PCP for my symptoms that had developed over the past 6 months. Idn what to do. I feel it’s not my lupus but my doc said it’s not lymes and hasn’t been.
I was undiagnosed by 10 doctors for 7+ years. No one even thought to test me. My main symptoms were chronic fatigue, brain fog, and episodes of flaccid paralysis in arms. No recollection of acute Lyme. I had to order my own testing, which was positive for Lyme specific bands. I had a negative ELISA. My first WB only had one Lyme specific band. My second had two and was CDC positive.
What about a positive ANA (320:1) PTT-LA High DRVVT High. But negative for Lupus and etc, and DRVVT Confirm is negative. Hexagonal phase was negative also. Joint pain, muscle pain, POTS, sleep issues, brain fog, anxiety, challenges with food/ colitis and oligomenorrhea. Had a tick with classic bullseye rash. All other bloodwork is normal. Am in the southeast. Not sure if it is Lyme? Stari? It has been four years.
IT TOOK ME 23 YRS PLUS TO GET A DX
Common sense is key when it comes to Lyme disease treatment.
I recently treated a patient with an Erythema migrans, or a bullseye rash, even though their Lyme test came back negative.
💡The truth is, Lyme disease tests aren’t 100% accurate, and relying solely on results can lead to missed diagnoses.
🧩When symptoms and clinical signs point to Lyme, trust your instincts and look at the whole picture.
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At this point why is Lyme disease not touched on more in medical education? These Dr's know nothing or even worse, the wrong information on lyme and co infections.. it needs to be mandatory for further medical education
Most Lyme Docs nor their practices take insurance. Very hard to find.
Be nice if this place took insurance
I had that rash and had to beg my doc to test. Head to toe! She finally did and I was positive but she still did not believe in Lyme so it was useless with her.
🙌🏼louder for people in the back
I was refused treatment for my EM rash after a tick bite. and the doctor rubbed my arm and asked what it was and if I had done it with lipstick. I also developed an EM rash after a red back spider bite. At the hospital I was refused treatment for that and told that people do not die from red backed spiders any more... Doctors in Australia want to stay doctors, so they are not treating.... My son was refused treatment another time and I was told to be quiet.
Thank you!!! If it quacks.... what on earth did docs do before all these LABS
So many doctors won’t acknowledge it and refuse to treat it.
Common sense  would be not paying you a physician $2500 just to make an appointment to see you for a consultation which is what I was told when I called your office. And then committing to paying you $300 a month for treatment on top of paying for a bunch of labs. Common sense would be able to see you as a person who prays on vulnerable sick people.
💡Did You Know? 💡
The CDC estimates over 300,000 Lyme disease cases annually in the U.S. But studies suggest that number could much higher!
📈MILLIONS of cases still go unreported every year.
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Thousands each year in Arkansas. There is proof... But they don't care.
Every time I mentioned Lyme to the doctors, they said Lyme is not in Virginia or Babesia was only in California. I did find a LLMD he saved my life.
My pet peeve; Stop publishing wrong numbers. 429,000 was their last admission... probably 4.29 million! But as advocates, we all have a duty to not minimize this problem.
A single dose of doxycycline has been shown to prevent an EM rash - indicative of Lyme disease.
BUT, there is NO EVIDENCE that shows it will prevent other manifestations of Lyme disease.
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Can’t trust single-dose doxycycline to prevent Lyme disease - Daniel Cameron, MD, MPH
danielcameronmd.com
Wormser offers no evidence that a single 200 mg dose of doxycycline is effective at preventing more than an erythema migrans (EM) rash.12 CommentsComment on Facebook
It's completely worthless, even doxy longer term by itself is worthless.
Not even 2 weeks of Doxy upon initial bite will stop Lyme.
Two doctors at an infectious disease center in Pittsburgh disagree. These so called specialists told me doxycycline kills Lyme and that's all there is to it! 2 different doctors said this, also "there's no such thing as co-infections! Not my words, but these specialists. 🙄😔
I love his post , however Dr Dr. Daniel Cameron will not respond to comments of questions ??
Zithromax oral worked the best for me.
I had this when I had a rash, just a single dose. No treatment. In hell now..
All docs who are clueless about Lyme say "here take doxy" hasn't worked for me ever. 30+ years of dealing with chronic Lyme. I've done doxy, tetracycline, biacsin and plaquenil, PICC line, and others I can't even remember at this point. Some helped at some points and other times not. It seems to be a giant crap shoot. I have never felt normal since getting sick. Nothing seems to cure it or feels cured while on meds. There is always symptoms just a difference of to what degree. On meds or not. I find at this point 30+ years into it, even meds that once worked in some fashion don't anymore. I've given up basically.
What about chronic lyme. I've had it over 50 years.
Nope !!! I was left for dead with Lyme and all co- infections till I finally was taken to a LLMD, by then I could barley walk. 17 months PICC LINE , did well after for several years then major stress brought a lot back now PICC LINE again
It used to be treated with the strong stuff...penicillin. specifically to kill syphilis spirochetes, "neurological disease"...what happened?
Please tell this to all the doctors that try to tell you one dose will work
I was diagnosed with heart disease at a young age, and despite the countless medications and doctor visits, my condition only worsened. The fatigue, shortness of breath, and constant pain were taking over my life. Then, I came across Dr. Anthony Herbal Hub After using his herbs for a few months, my symptoms vanished, and my doctor confirmed I no longer had heart disease. I can now live a full life without fear. Thank you, Dr. Anthony!
❓Do you have Lyme disease for life?
No, with the right care, there is hope for healing, and a future without symptoms!
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Finding the right "care" is the issue 😭
I had bartonella and babesia. I found the stram center of integrative medicine in Delmar NY. Saved my life.
Dr. Daniel Cameron should people treat Babesia prior Bartonella and from your perspective - how long aprox. should this co-infection be treated?
There is no care when you live in Australia
Hi. You helped me with Lyme disease a few yrs ago . Still osteo arthrirus increased signiificantly after having that disease. Is there anything i can do?
Have you ever treated a persistent rickettsia Akari infection successfully and what antibiotic did you prescribe?
Not if you have a immune deficiency
Dr does Ivermectin helps regarding the same and did you have any feedback from anyone
AMEN, manawellnesscenter.com Mana Wellness Chelmsford has been a BIG relief for me.
Check out BVT - Bee Venom Therapy. It really works.
I was diagnosed with heart disease at a young age, and despite the countless medications and doctor visits, my condition only worsened. The fatigue, shortness of breath, and constant pain were taking over my life. Then, I came across Dr. Anthony Herbal Hub After using his herbs for a few months, my symptoms vanished, and my doctor confirmed I no longer had heart disease. I can now live a full life without fear. Thank you, Dr. Anthony!
BVT
$2500 just to get an appointment with him cash. Then $300 a month for treatment which is OK but how many people that are sick and disabled from this disease can come up with $2500 if you’re a doctor and you really wanna help people that should change.
Healing from Lyme disease isn’t a straight line—it’s messy. One day you’re feeling great, the next, symptoms flare up and it feels like you’re back to square one.
💪But setbacks don’t mean you’re not healing - they are just part of the process. Healing is more like a tangled web, not a linear path. The key is to keep showing up and keep moving forward—even on tough days.
If you're experiencing a setback, remember: you’re not failing. You’re healing.
💚Trust your body, take it one day at a time, and keep believing in your recovery. There is progress even in the hard moments.
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Exactly
Thank you Dr. Cameron for that peptalk. People really need that
I was tick bite 20 years ago last August. Finally I had a doctor run blood test through a company called I GenX I had Rock mountain spotted fever Cat Scratch Fever and Lyme I been missable every since. I now started having seizures with No help in sight.
💚
💚❣️💚
For 3 years, my patient thought she was just "Not Feeling Like Myself" – fatigue, brain fog, pain, and night sweats. 😞 She assumed it was menopause... until her daughter’s Lyme disease diagnosis led her to explore further.
💡After testing, she discovered Lyme along with a co-infection of Babesia. Treatment brought her back to health, proving Lyme can mimic many conditions.
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I had same problem. So hard to find help that will truly listen. Thankfully I found hope in listening to Dr. Cameron on the internet. Then a awesome functional Dr.
I had a Babesia infection TWICE both times without a lymes infection.
How can you confirm or deny someone has Lyme or the effects of it? … even years after known tick bites, what lab tests and what values mean what? Where can I go to find this information?
Any thoughts on TBDs causing renal stenosis?
And what did she treat with?
tafenoquin is a game changer for babesia.
I don't even remember what I was like before I got sick over a decade ago...
Right ! What did she take to recover?
Lyme disease can affect the nerves that are responsible for controlling the muscles in the vocal cords.
As a result, Lyme disease can cause a patient to lose their voice.
Have you experienced vocal issues due to Lyme disease?
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Can Lyme disease cause speech issues? - Daniel Cameron, MD, MPH
danielcameronmd.com
Individuals with Post-treatment Lyme disease Syndrome can have language fluency deficits, according to findings from a new study.8 CommentsComment on Facebook
I have dysarthria and abx have not helped sadly. Trying to live with it now.
My daughter lost her voice for 8 months. It’s back now, but slightly weaker than before.
No, but my sister kinda wishes it would!
Yes also my rescue Turkish Dog has Lyme & he has lost his howling bark 😢
Yes 🙋🏻♀️🙋🏻♀️🙋🏻♀️
What testing would show if you have vocal cord issue? MY voice is very frequently very hoarsy... would that be a symptom? Been 13 years untreated for me.
Jag önskar svensk översättning tack 🙏!
Sometimes I was often thinking, why I am not able to sing anymore, where is my singing voice 😢 now I know why 🙏🏼
I hate to be the bearer of bad news, but alcohol can seriously hinder your Lyme disease treatment and recovery. 🍷
During this time, it’s important to avoid alcohol as it can cause setbacks, relapses, and even trigger Herxheimer reactions.
Stay focused on healing—your body needs your full support. 💪
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I drink (good Tequila) once or twice a week and my Borellia and Bart are gone.
Lyme Disease made my body unable to properly metabolize alcohol. I once had symptoms of alcohol poisoning from just a single mixed drink. On two other occasions I broke into horrible hives all over my body.
Learnt this lesson pretty quick !! can drink none now 😩
Gave up ETOH 37 years ago, when I started getting nauseous even drinking a beer. I thought my nausea had to be from chemical exposures to Class A poisons & TCE at work.
Spirochetes thrive on sugar. You are personally feeding them when you have sugar, carbs, alcohol. It's been 10 years and if I had an Oreo cookie, I'd get totally lymed out, they'd come out of dormancy.
Truth, even post symptomatic we have to still be careful. I can now enjoy 1 or 2 drinks, no more than that.
Can you explain why?
What are some treatments to actually kill lyme!! I just followed your page. I'd love to learn more of your treatment.
Does it show up in blood work or do you have to have a special test. Every time I drink I get nauseous and sick headaches
Doctor, can you please explain exactly what alcohol does to hinder the treatment?
Bee venom is infinitely better for chronic Lyme than anything the white coats can offer. Obviously drinking a poison isn’t good for severely sick people lol
Alcohol is full of sugar which causes inflammation. There are sugar free alternatives!
The Undiagnosed Lymies brain tells them to drink
Fact
Absolutely!
Fact...
From stuck to thriving! 🌟 One patient spent two years feeling like recovery wasn’t possible. But with a shift in mindset, lifestyle changes (goodbye alcohol & processed sweets), and a consistent treatment plan, his health took a turn for the better.
💪Small changes = big results.
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Smile Dan! Say hi to J for me. 🙏