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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Some patients are asymptomatic early in their illness. Was Babesia asymptomatic early in your illness? #LymeConversations ... See MoreSee Less

Some patients are asymptomatic early in their illness. Was Babesia asymptomatic early in your illness? #LymeConversations

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My Dr has had me on high dose doxy for 2 years, just cut the dose in half , but he put me on samento and banderol, for the first time since I've had "the Lyme arthritis that was so severe," my pain is completely gone, I can't believe it, I feel like I did before I had chronic Lyme Disease, and I'm soooooo thankful for that..

Yes. I had Lyme and Bart symptoms for years after a bullseye rash with no treatment because tests were negative but when I was treated with high doses (IV and oral) of Vancomycin for C-diff, I suddenly started having insane sweating several times a day just from the back of my thighs. Previously, Lyme had stopped me sweating anywhere on my body so this was very strange.

Yes and Oregon doctors still couldn't diagnose it. 2014 I saw 6 hospital visits, a sleep study and tens of thousands spent, chasing serious cardiac symptoms...had they treated my Pathogens, we'd all been better off. They have no clue hear as to what they're doing in relation to pathogens. 15,000 bee stings later, my last Igenex was Negative for Babesia. Yippee!!! #oregon #OregonChamberofCommerce #TravelOregon #Eugene #LaneCounty #OHSU #OregonMedicalBoard #OregonMedicalPolicyBoard #UofO #Vetrenarians #Springfield #Lyme #Babesia #FlippinLyme #DiveGirlDeb #Pain #Disability

That is a tricky one for me to answer. I was too young, at age 9, to understand or make sense of my body breaking down. However, after the second tick bite and re-infection, babs certainly made itself known!

Yes, except for the high fever and chills shortly after my bite. My doc said that usually indicates Babesia along with the Lyme, which was true for me.

Was told I had gout and eventually to a rheumatologist. They said either fibromyalgia or sjorgens. Lol you have to laugh 🙄

Very interesting. Has there been any studies done in potentially building an immunity to the bacterias in ticks? Would that ne possible? It’s something I happened to think about the other day.

Yes - for years.

Yes, for about about nine months. And then I hit a wall and could hardly stand in the kitchen to do dishes.

Gets worse each time

My second time was much worse

Yes

Yes

T

Yes

Home treatment for Babesia www.smile.org.au

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We can’t allow focus on this pandemic to leave patients with Lyme disease behind.

Have you felt left behind? #LymeConversations
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We can’t allow focus on this pandemic to leave patients with Lyme disease behind. Have you felt left behind? #LymeConversations

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Not just Lyme patients. All care for all conditions was put on hold for the past several months. It’s been a very dangerous time to have a serious illness other than COVID. If you needed medical care since March your choice was phone or ER only. As an example to put deaths in perspective, 647,000 people will die of heart disease this year. Approximately 120,000 people have had a delayed or missed cancer diagnosis in the past 3 months due to COVID healthcare shutdowns.

Makes it even more terrifying to know the covid tests are just as inaccurate as the lyme tests. Mass testing for something that isn't very accurate and can give false positive or negative results. The state is requiring testing every 2 weeks for people in thw hair industry. Who pays for this? Seems like a crazy idea considering its safe enough for us to open. But we should get tested and our clients have the right to ask if we have been tested. Do i have the right to know if they have been tested. And we are all.going on the honesty policy. Who thought of this game plan?

yes, my PT was cut off with no notice and i'm now bedridden the PT i started with is nit coming back and treating so starting over PT was my pain control losing three months is like a lifetime

!!! Lyme Disease is the the OTHER pandemic that the CDC doesn't want to acknowledge. It's been spreading around the globe, unchecked, for the last half century. I know because I've been reinfected for decades. Thank you Dr. Daniel Cameron for all you've done & continue to do for educating patients and the world about LD. You're a valiant LYME Warrior. Stay well and safe. <3

The world just got a small taste of how broken modern medicine really is.

We were left behind a long, long time ago. I laugh at all the horrible things they say the covid-19 virus can do to people and the panic it caused because a lot of them are exactly what Lyme does to people, but the medical establishment denies it.

If anything good can come out of Lyme, its the love and care from the few LLMD's around, and the bond of suffering and understanding from the Lyme community. We can go through this together and not feel alone in our sufferings.

Agree. The fact that the media ran with covid shows there was an adjenda behind it... yes people died, yes its contageous, It was used as a tool to bring chaos to the USA,,,,,,,,However>>>>>> Lyme is a coverup......No one wants to address the pendemic of Lyme and associated diseases. It can be contageous depending on what co infection you have, its worldwide, it kills, yet silence......

yes my son was left behind in 2016 when the state put him in a psych hospital with tbd. and then when he finally is being discharged with furloughs and visits covid 19 happened

Left behind is an understatement. Exploited: Lyme meds are being hoarded by covid-19 possibilities. Anything which may help fight Lyme is more difficult to locate and at a higher expense. If the financial hurdles keep getting higher I won’t afford wellness.

I'm asking my neuro about Lyme neuroborreliosis. Should be interesting...

Nope. My LLMD has been in contact with me this whole time. ❤

Yes. Recently moved to another state and was just beginning to find different docs when COVID hit. Feeling very lost and alone from a medical standpoint

I feel left behind because I see a government that throwing billions and trillions of dollars at a problem, while they're letting us rot literally on the sidelines in pain. And I'm irritated that our nation is not pathogen smart. Our general Community can learn a lot about pathogens from Lyme disease patient but they have their ears Slapped Shut! As soon as you talk about when pathogens or you post that in a virus group, everybody jumps on you because you're talkin about a bacteria! I think we need to teach our general community how to widen their mind when it comes to pathogens in general. It shouldn't be these deeply specialized divisive names for everything. We have all these individual names for these symptomology clusters of are pathogens. And because everybody has a different name we are divided. Our nonprofit agencies are working against each other. Our funding for research is working against each other. Maybe we need to like streamline this and have a like a 50-year objective where everybody pitches in to work towards that goal. Instead of fretting about how much money gets blind in their pockets.

No for Lyme but other issues some people are in real need of medical care and cannot receive it properly

In my head In Florida

Stony Brook has 180 COVID studies going, but no Lyme studies.

We get no help anyway. I don't know about Corona virus. But, Lyme is worse than anything!

Cannot focus on covid and completely destroy the country , period .

CDC has never done anything for Lyme

Business as usual here. Except for the fact I gotta were a mask to go anywhere

I felt left behind looooong before the pandemic

Completely! It was long before COVID though.

They will be left behind have been for over 40 years and counting..

you can say that again!!

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"Cancer has not taken a vacation," said Dr. Lisa DeAngelis, the chief medical officer at Sloan Kettering. "It hasn't been sheltering in place. It's been doing what it does, which is develop and, unfortunately, grow." wrote Ramgopal and colleagues at nbcnews.to/3eibycu.

Has Lyme disease taken a vacation? #LymeConversations
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Cancer has not taken a vacation, said Dr. Lisa DeAngelis, the chief medical officer at Sloan Kettering. It hasnt been sheltering in place. Its been doing what it does, which is develop and, unfortunately, grow. wrote Ramgopal and colleagues at nbcnews.to/3eibycu. Has Lyme disease taken a vacation? #LymeConversations

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Lyme Disease NEVER takes a vacation! We are all still here, still suffering, and still waiting for answers. We have been forgotten, while the next virus of the moment appears to the entire world in search for a cure. Once again, we are placed on the back burner—never mind that at least 500,000 new cases of Lyme Disease are diagnosed EVERY YEAR in America alone! When will it be our turn to get the answers for which we have been seeking for nearly 50 YEARS?

No but we r the forgotten. Just once I would like to not have to fight to be heard or believed. I am in chronic pain everyday and yet I’m told it’s nothing it in your head.

And my doctor told me that breast cancer patients who had hormone positive tumors have not received surgery during the shutdown, but we're treated only with prescription meds. So hard to believe. No, none of it has taken a vacation.

The only treatment available for me is antibiotics. That’s it. I’ve taken them for four years, if I stop my bacteria load goes up. I’m stuck in limbo.

I’ll tell ya what...I was surprised that my child had a flu-like illness after 7 weeks of quarantine! I can’t help but think a tick bit her!

Ive been waiting for it to go on vacation for the last 42 years

i have copied/pasted the entire article exceeding 8,000 characters for a reply to my home page here: www.facebook.com/betty.gordon.3323/posts/851003332054486 i can't believe how much she has gone thru!!

Memorial Day Weekend is here. While practicing shelter in place, you might be bitten by a tick. That can spoil your weekend. Have you checked your child for ticks? #LymeConversations ... See MoreSee Less

Memorial Day Weekend is here. While practicing shelter in place, you might be bitten by a tick. That can spoil your weekend. Have you checked your child for ticks? #LymeConversations

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I tell my young friends over and over again...and anyone who will listen. They think it wont happen to them. A few listen. Not up here though..it " ends" in Warren county they think...its in Hamilton county. I met 2 people whose dogs have it! I know a little old lady whose beautiful grandson has it. Hes 9. Her husband had ALS too!

And check your pets as well

2 weeks ago

Dr. Daniel Cameron

Can you trust your doctor with Lyme disease? #LymeConversations ... See MoreSee Less

Can you trust your doctor with Lyme disease? #LymeConversations

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Who? My neurologist?! I’ve seen many neurologists, all of them don’t attend or are not interested in the etiology of the diseases they study or studied for many years, their profession. They systematically ignore infections, the main cause of almost all the neurodegenerative diseases. Shame on them!

So many drs don’t know a thing about Lyme / they all think I’m crazy and complain to much

Absolutely NOT! He denied tick related issues were in our area so it couldn’t be the case. Everyone in the practice shared the same opinion. When I finally shared the paperwork proof- he actually tossed the papers at me - told me to go back to the other state to take care of it- asked why did I bother coming here- & walked out. Infuriating. Thankfully- we did find help elsewhere. She is BRILLIANT- knowledgeable- and a lifesaver.

It’s not so much the doctor it’s the limited information and drugs available to fight co-infections. Do you think Alinia with doxy should be prescribed for 2 years? No follow up blood work? Do you have any idea what Alinia costs in US? 9000 a month at HEB so who can afford that? So you have to resort to other meds including vet meds.

I only trust my Lyme doctor. Every other doctor I have seen has been completely ignorant about Lyme. The whole "do no harm" oath is tossed out the window when it comes to Lyme.

Nope. I fired all my doctors and ended up at an herbalist and now I feel amazing after years of suffering.

They took my doctor’s license away. It’s the medical board of Virginia that we can’t trust.

I better! Since it's you. The rest of my Doctors are a mixed bag for sure. Tenuous at best with most of them. Not sure where the oncologist stands yet...

I like my doctors but I’ve been having trouble with this anxiety that seems to really kick in at night and no one has been able to really tell me what is causing it or how to deal with it. I need sleep.

Interestingly, we’ve had some great chats after many years, they have even asked me to provide them with much of the research I’ve come across - they want to learn, but still feel that their hands are tied.

Absolutely not! Having worked in the medical field my entire life, I have become disillusioned in the medical profession and no longer go to doctors.

Not a single one until I found Dr. J, now I feel safe for the first time in many years

Yes, but after great searching, 3 decades of it. It’s true, she has it, too.

My primary? No. She means well...she just doesn’t get it. And the kicker? She had Lyme (caught it early, no complications) so she thinks it shouldn’t be causing me issues.

My Lyme doctor yes, any primary care physician nope absolutely not

Only you!! The other dr wants to make it mental no matter what the issue.

Yes only my lyme doctor (my lyme doctor is over 80 years)! The normal doctors no! Greets from germany

took years to find her but my new doctor, yes

Not my PCP, and my Lyme Dr. Is too expensive

Not one of them in 20 years! Not even a so called LLMd

No to most doctors but there are a few good ones with brains who believe in the science & not the religion of medicine

Nope! They ignore everything you say even when test results like histamine levels, wbc counts etc are high.? It’s craziness! Even with all the knowledge out there m, there seems to be a constant disconnect with the medical community. Their own common sense never kicks in, its as if they are programmed to see nothing.

I trust YOU with my life!!!!

UK GPs no, Dr in Brussels, yes.

They can get a vaccine almost for virus , but can’t find one for Lyme, give me a break all money making bullshit

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2 weeks ago

Dr. Daniel Cameron

COVID-19 pandemic exposes flaws in public health response to Lyme disease

What flaws have you seen? #LymeConversations
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COVID-19 pandemic exposes flaws in public health response to Lyme disease What flaws have you seen? #LymeConversations

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Lyme needs to be recognized for the horrific condition that it is. Money needs to be given for extensive research, and experts like Dr. Daniel Cameron should be the consultants who lead the charge and are LISTENED to! Whilst talks and strides being made of/with Lyme vaccines and prevention are great and all, what is truly needed is a cure. I had a PICC line for thirteen months, and was on antibiotics for 5 1/2 years. I would make progress, sometimes great progress, and then I would always slide back. CURES are needed! I have been at this for 10+ years. Longer when I truly think about it, and I am certain that many of you on this thread have been battling even longer.

Because there is no public health response to Lyme (or very little , if any) I would like to know what they plan to do differently now? Will they continue to obfuscate , deny and belittle patients and doctors who treat them? Will they change course and suddenly admit to the seriousness of tick borne infections? Will they begin to correctly test and TREAT this horrible disease so many millions of us have had to deal with on our own for so many years?

Or is it that if there is public awareness of Lyme, that people will dig deeper into its origins, and people with Lyme would take class action against a deep state thats been around for decades. The CDC have had their hand in the cookie jar regarding lyme vaccine patents too but havent come up with anything safe as yet.

Lyme has been around for a long time and their is no money to be made in treating it with simple antibiotics, so there is no urgency. Once the numbers in terms of cases multiplies rapidly then we may see a vaccination on the horizon, where money can be made. There is not much Good will in helping the sick but if there is a financial windfall to be had, notice how many Physicians will suddenly believe in this illness.

After the glaring CDC failures in handling Ebola, I thought there would be changes in the organization, and people would be more likely to believe that they are NOT all-wise and knowing benevolent medical leaders. But their positional authority makes it very difficult to overcome their policy statements, as the general belief is that they use the latest and greatest science (which = fact) when they issue their statements and policies. I can’t believe how many people glaze over when I suggest the CDC isn’t always right, let alone say they’re active participants in a cover up.

The flaws are less than isolated. One does get to wondering if all of the agencies involved have resigned to a tide counterproductive to healthcare.

There is no public health response for Lyme disease.

Right from the start I saw denial of a disease that could become a pandemic. Lyme spreads more slowly but it continues to spread. It kills people more slowly but it kills people. The connection to destruction of habitat to spread has a lot to do with both. Pathogens might not jump to people if native habitat were sustained. People depend on natural systems.

That the CDC is capable of politicizing any disease, if it works with their agenda.

Wow. So on point! Well said. Thank you.

LOL! It's more like what haven't we seen! Like leadership, competence, intelligence, dedication, perseverance... or anything else it takes to identify a problem, tackle the challenge and solve it!

Similarities in flaws...denial, obfuscation of origin, CDC reporting, downplaying efficacy of therapeutics.

Too many to list.

Putting aside the flaws we have seen in our public health system's response to COVID-19 , we can agree that the response has been massive, swift, and multifactorial (diagnostic, preventive, treatment, education). This is in striking contrast to its response to Lyme and other TBDs. Lyme is generally a vastly more slow-moving illness, with a far broader constellation of possible symptoms. While certainly politics at every level operates in the COVID-19 pandemic, those political agendas are relatively transparent. With Lyme, though, the impact of politics has been far more opaque although in fact an enormous factor in public health failures: insurance carriers have deliberately driven the diagnostic criteria to limit treatment options (IV abx are extremely expensive versus cheap oral abx); the risks are routinely downplayed to minimize impact on real estate and tourism - "the tick has to be attached for at least 24 hours!"; the thought leaders in IDSA are financially linked to insurance money and also so invested in their worldview that their critical thinking is compromised. I could go on. But it has been far easier for public health system to ignore a slowly unfolding pandemic of Lyme than a rapidly moving and immediately virus. Thus far, it appears the Lyme spirochete may be far more wily in its strategy than COVID-19 .

Following

dan, as i told you privately earlier today, i hope to post my husband's 2 brain autopsies showing he had these things: LYME, CLUSTER, 24, OF FILARIAL NEMATODE WORMS IN BRAIN HAVING LYME DISEASE, bartonella aka cat scratch disease 2 species, and LEWY body dementia causing his visual and violent hallucinations. 2 people promised to get his case published and didn't! so i'm putting it out there to the world! bettyg, iowa, 50 yrs. chronic lyme, misdiagnosed for 35 yrs. by 40-50 drs. UNACCEPTABLE on both cases!

noone cares about Lyme, especially compared to Covid; but Lyme isn't virally contagious, either. Noone seems to be working on vaccine and/or cure for Lyme. I do see many similarities between both diseases.

darlene, i was able to get dr. pedati's email address from her admin asst. today. i sent them back a thank you now. i asked asst. if she could find out a good email to send to trump since ex-wife, marla, had it and they had a daughter together. we'll see. she was very prompt on returning an email from overnight to them 😉 wish me luck! betty

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2 weeks ago

Dr. Daniel Cameron

How are your children with Lyme disease faring during this COVID-19 pandemic? #LymeConversations ... See MoreSee Less

How are your children with Lyme disease faring during this COVID-19 pandemic? #LymeConversations

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I feel bad for my outgoing, full of energy 15 yr old that is trapped with a sick mother that usually can hide while she is attending school. I am praying I can find her a job that doesn’t include me helping.

Nothing really changed here. Other than getting groceries. We were home anyway. People are getting a taste of the Lyme Chronic pain life. Your trapped!!

Does Covid 19 have anything to do with Lyme? I am asking because I have chronic lyme and I have had sever leg pain and headaches, worse than usual.

3 weeks ago

Dr. Daniel Cameron

What did you wish you knew before you became ill with Lyme disease? #LymeConversations ... See MoreSee Less

What did you wish you knew before you became ill with Lyme disease? #LymeConversations

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that it is the nymph that infects you usually, not the big ones.

These answers are so helpful to me as I am creating an educational PowerPoint presentation on Lyme & tick-borne diseases for our health systems patients. I am a nurse practitioner in Wisconsin who journeyed my way into a career in health care after a tick bite turned my life upside down at the age of 16 (that was 15 years ago now 😏). Someday I hope to become formally trained by ILADS. My own answer to the question you present is wishing I’d known that not everyone gets a classic bullseye rash, and that there are false negatives with testing.

My body can’t remember what it feels not to have lyme, as I got it as a child. But, I wish I known to scream and fight back that I was truly sick and not believe the psychosomatic explanations that I was being fed as early as 12. I wish I had known how to describe my symptoms in a way adults understood I was sick and not moody. I wish I knew myself I was actually sick and could have avoided the decades of self doubt, questioning, and loathing because I didn’t know better than to trust my doctors. I wish I had known it wasn’t my fault.

That veterinarians are better trained in florida ** and the cdc is not my friend Donald Cerce

you need to replace the vitamins that the lyme destroyes . iodine b12 d3 and magnesiums . lyme reproduces in your red blood cells destroying them . i had spotted fever, i had symptoms for 3 years so i took a dna test and downloaded to promethease. i have a mitochondrial mutation and cytochrome p450 mutation so medication made things a lot worse.

I don't know, because in the end I don't know where or when or how I got borreliosis, so even though you know there's a potential danger, could you have prevented it? Or would you just not have gone into quarantine because of fear if you would know what you know right now? You can catch so many diseases, and you really can't protect yourself against everything (even if you try to live as safe and sound as possible) we don't even know about (the existence) yet. Afterwards I can say I felt already bad for a long time, but lab tests don't necessarily tell the truth, the medication doesn't necessarily help you; I already knew that people were left to struggle on their own for diseases, so I don't know if knowing the truth about this, would have changed my chances in life. I wish I could go back to the moment I had back luck, because I'm still wondering and it's pretty difficult to avoid you never noticed as I'm not sure what caused this in my personal case. I still ask myself if I could have prevented it or not, and why some people's body seem to fight it without any problems whereas I didn't.

Each physician will treat you how they like, ignoring what the individual may be predisposed to. The standard treatment is hardly sufficient for anyone that isn’t diagnosed early or has underlying concerns.

That I should have been treated already when I was 15-16 years old, and not wait until I was 46 years. And that I had understood that I had a mycoplasma infection from 2003 .. Should have gone to a private doctor abroad who would understand the disease so could get seriously treated. Then I would not get infection with my own yellow staphylococcus deep up in my nose. This spread for 6 years before I got private treatment. I have and have had insane pain.

I wish I knew more about all the bad things bugs can carry. I spent alot of time fishing as a kid and was always bit up from mosquitoes. Farm kids grow up to be tough or at least not sissies. My thoughts were " it's just a bug right?..?" I had no idea a tick bite could be so life changing.

That 2 weeks of antibiotics would not cure me completely

I just wish I'd known I had it and that it was going to make me so exhausted, before I had half a dozen babies. I love my children, but I was definitely not prepared for how much rest I was going to need and not be able to get. I've been exhausted for decades, and I've completely lost hope I'll ever not feel exhausted again.

The danger of not protecting against tick bites and bird mites. And not presuming all doctors are Lyme literate.

To not listen to CDC doctors when they told me “don’t worry” after they pulled a tick off of me, threw it away and said I didn’t need antibiotics. Five years later I was diagnosed with Lyme/Bartonella. I wonder what my life would be like if I were healthy 😢🖕🏽

I wish I knew much more about how sick a tick makes people😳

My Granddaughter is 18 yo. She woke up with Bells Palsy. Her blood work came back its Lyme Disease. They have her on antibiotics.

I wish I had appreciated my days filled with exercise and a good night's rest.

That not all doctors are created equal .... some become doctors to make money some become doctors to heal people and Everything you eat matters !!

In my search for health - I found out... How corrupt and dangerous the medical / science & pharma lobby is. That itself is sickening our ‘democratic’ society.

I wish I knew I would have to be the mom that needed to advocate from day one. It’s not growing pains.

That I should stay out of the yard and forget gardening! Looking back, I'd rather have my health back and skip the flowers.

1. That you might not get a bullseye rash; 2. You might not have immediate symptoms, that you can just go steadily downhill.

How ridiculous it is for the powers that be to continue to tell us to look for the bullseye. I've been infected numerous times, never once got anything like a bullseye.

This will sound counter-intuitive. While there are many things I wish I had known, in some ways I am grateful that I did not have the complete picture. I don’t think I could have handled the 100% uncertainty of the journey or the long switchback road that would represent recovery. Dr. Cameron kept me pointed on a hopeful path to a healthier future both physically and mentally.

Any information at all would have helped: prevalence in my area, symptoms, co-infections, how to avoid being bitten. If I had known then what I know now, I never would have bought a house and settled where I did. I would have left Wisconsin entirely.

As a mother of children who have Lyme, I wish I knew that GI problems were a primary symptom of Lyme in children.

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