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.

It is hard imagine how Lyme disease feels.

Doctors at Tufts University School of Medicine described 27 individuals with chronic neurologic manifestations of Lyme disease who were ill up to 14 years.1

Their symptoms included:

Fatigue
Sleep problems
Poor memory and concentration
Irritability
Depression
Headaches
Ear ringing
Hearing loss
Lightheadedness
Chest pain
Palpitations
Pelvic pain
Numbness and tingling extremities
Neck pain
Joint pain
Joint stiffness
Muscle pain

I find it hard to imagine how Lyme disease patients feel.

Can you imagine how Lyme disease patients feel? Please join the conversation in the comments below.

This is one of a series of short videos to explore topics I have seen in my practice. Dr. Daniel Cameron. #LymeConversations

1. Logigian EL, Kaplan RF, Steere AC. Chronic neurologic manifestations of Lyme disease. N Engl J Med. 1990;323(21):1438-1444.
... See MoreSee Less

 

Comment on Facebook

Does anyone have recurring rashes?

I am a 49 year plus chronic Lyme/Bartonella patient who is misdiagnosed for 35 years on my lyme disease and just found out 10 months ago of my being positive for Bartonella, the cat scratch disease of two species. I would not have known that except my husband’s second brain autopsy showed that he had the Bartonella described above so they had me test my blood at The number one Bartonella Lab, Galaxy in North Carolina. Yes I’m positive for them both to. I have 80 to 85% of what’s listed above and much more that I’ve contended with. I’ve had many major surgeries and now realize they were related to my tickborne diseases I was unaware that I had. You get tired of family, friends, and coworkers saying, “it’s all in her head“. Walk in our shoes and then your opinion will change And then you will become empathetic. Betty G., Iowa

I've had Lyme for 10 years,you missed out one thing in that list, fear. Because in UK if you have chronic Lyme our NHS doesnt treat you, doesnt test for co infections. So you are really left to get on with it. If you have a course of antibiotics they say that you cant have it after finishing them...so it's extremely worrying. Unless you have money to pay privately you are left basically.

I can imagine but only because I lived it.. i was lucky enough to get well again because of amazing doctors like you..

Before testing very positive for chronic lyme disease in 2011, I never would have realized the horrible extent a person has to suffer from lyme disease, co-infections, ignorant Drs, family members questioning your inability, loss of friends, fear of hospitals and their incompetence!! This disease destroys you physically, mentally, creates unbearable pain, causes heartache from those you love. I never knew lyme disease could take away my life, family members, friends and completely disable me in more ways ever imaginable! I thank God for llmds, their understanding, compassion, willingness to go beyond the borders of the CDC to help us!! So many are suffering from this horrible and wicked disease!! I never knew how serious this disease was until I became a victim of lyme!

My 11 yo has 13 of those symptoms, a CDC confirmation and DRs who think its "all in his head". Ha... "Medical professionals" ... Thats a very loose term in my book, at least with any with in traveling distance. Not a one of them worth the paper their degrees were copied to.

Dear Dr Cameron, both my mother and I are Lyme disease patients since February 1982. Back then, Lyme disease was totally unheard of in France. When my mother got infected, while being pregnant with me, her GP gave her a shot of cortisone (which is the worst thing to do, as it flares up the infection... But how could this poor man know back in 1982 what he was dealing with?). We both developed the disease in similar yet different ways. My mother has cardiac symptoms, very weak (prone to breaking) tendons, chronic fatigue, pretty much all of the mentioned symptoms in your post. As for me, I'm the textbook case of a person born with Lyme disease. I was a very anxious baby (still am), was born with a severe club foot (but there's no way of knowing if this is Lyme related) that required many surgeries to make it functional. People and family would laugh at me because I was always hiding from the sun in my mother's long skirts. Turns out, being now 37 years old, I can't stand sun on my skin anymore, it is painful. Babesia gave me big stretching marks on my hips when I was 4 and had no weight issue. Sport at school was a nightmare, for I would always end up with a tendinitis. Those were almost a "normal" thing, almost always there. When I turned a pre-teen, my mood began to change. I became pretty violent and angry. As a teen, I suffered from eating disorders, depression, self-harm, suicidal ideations. I would rebel against any form of authority, still can't stand authority figures. At 19, I had an ectopic pregnancy. Back then in 2001, doctors said I sure had a STI. I was so ashamed. Lyme was never brought on the table, and I must say, this is something we didn't think of when it came to me. I was just a difficult kid. Chronic fatigue and nerve pain began shorty after that. My 20s were a neverending series of jobs that I would quit, ending up with a burn-out that would take many months for me to recover. Trying so hard to understand what was wrong with me, why I was in pain, depressed, exhausted, not having the life of a 20something person. Mentally, it got worse too. I had no idea what was wrong with me, only that I was some kind of ....ed up in the head. In 2014, I got tested positive for Lyme borrelia, babesia, bartonellia and rickettsia (and some others). In 2016, I got diagnosed with bipolar disorder and borderline personality disorder. Since it is most certainly mimicked by Lyme disease, treatments for these disorders don't work on me and I'm labelled as non-compliant in my "psychiatric" medical record. Which means I'm on my own, no more therapists (they threw in the towel), handling massive mood swings and suicide ideations the way I can (lots of sleep and anxiety pills) What symptoms do stand out? Pretty much all of what you mentioned + the absolute FEAR of what is to come. I'm 37, and I witness with horror how my mother's condition (she's 60) is worsening since last year. She pretty much escaped death after a massive pulmonary embolism. I do happen to have the same setting in my DNA. + the isolation. I lost all IRL friends around 8 years ago, when I still was 29, because how do you keep explaining that you can't commit to something you said you would go to with them (you felt good when they asked if you wanted to join and thought "This is going to last!") over and over again. Right now, knowing that I have chronic Lyme disease and psychiatric disorders, I keep myself out of the "real world" 1. because joining in activities feels great at first, but the price is heavy to pay (massive exhaustion and people not understanding why you don't even have the strength to keep showing up) and 2. because I wouldn't wish myself for anyone. Been single for almost 5 years now, and this is a burden I don't want to impose on anyone. Feels very lonely though. + the disdain and/or ignorance from qualified doctors to family, friends and acquaintances. Lyme disease patients are INVISIBLE in the medical field. How many times did a professor belittle me, telling me there were worse diseases than Lyme disease, such as diabetes! As a result, I am extremely wary of any doctor. Lyme disease means suffering every day, EVERY day. Yet your relatives and friends keep asking "What's wrong today?" + I cannot drive because I'd be a danger to myself and to others on the road. I cannot focus and remember simple rules and common sense. + the FEAR you feel every time you have a new unknown symptom/feeling. Is it Lyme? Is it something else? + being born with Lyme disease, I have the feeling of a wasted life. Sometimes, I can't even understand why I keep fighting (going to bed at night, waking up the next morning and doing everything all over again). I'll keep "fighting" until one day, I don't anymore.

Thann you for bringing awareness.. I’ve had all of these and many more. Panic attacks Tremors Gastrointestinal issues Sortness of breath Sinus issues Feeling unsteady Exhaustion when doing simple tasks Etc.

Yep pretty much have all of these symptoms and it sucks I don't wish it for anyone. Unfortunately I can't afford a Lyme specialist and insurance doesn't cover it. Since 2012 never found a tick never had a bullseye rash. Regular Drs treat with doxy and think you are good to go. Must be something else but can't find anything else.

Here’s how I describe my symptoms while in treatment- getting hit by a Mack truck then being put in an industrial washing machine and having the worst flu and hangover at the same time for YEARS!!!!!!! I’m lucky because I’ve had access to pain medication. Sooooo many people get confused because the illness is soooooooooo isolating that you tend to minimize the HORRENDOUS way that feel just to alleviate the incredible isolation of this illness. This illness is currently breaking up a very strong marriage. I’m soo much better but I’m not out of the woods. Thank you thank you to all the medical professionals that believe us and treat us!!!! ❤️💚

Dr. Daniel Cameron: You don't have Lyme? How did you get into this business? Every single LLMD I know has Lyme or a spouse with Lyme. And you are citing Steere again? If there is one person on earth who is responsible for hiding our problems, he is the devil incarnate.

Here's a couple symptoms that people really don't understand that I've experienced. Feeling like you are lost Actually getting lost in familiar places Can't remember which way to turn things (like hot/cold faucets) Forget common traffic rules Can't organize anything Can't understand what people are saying even though you can hear them.

Karen Malatesta

Yes Absolutely, BUT.....Dr Cameron how come your office doesn't accept ANY insurance to help US WITH LYME DISEASE AND EASE OUR PAIN???!!!!

I had a Dr tell me that I would "be better off " if I had cancer or HIV instead of Lyme because as he said, "Doctors don't understand it, there is no money for it, and no one will ever be running or wearin t- shirts to raise awareness for it." That was in 1994. How much longer must we suffer??

Karen Malatesta

It sucks dead bananas. It involves every part of your body. It seems to be never ending. It hurts and you cant say much because it just makes people you care about feel helpless

No one gets it till they get it. I deal with 90% of that list and I get told to talk to my psychiatrist.

I don’t need to imagine, I’m living it. I have most of the things on that list.

I’m sick of being sick 🤢

....

When are they gonna come out with a real blood test?

The whole thing is just exhausting

Melissa Smith good person to follow

Not to mention polio like leg pain and never ending sores that run in cycles from measles to chickenpox to leprosy. ... Yeah. Hell.

+ View more comments

Breakthroughs in Lyme disease have been rejected by some.

Most doctors have accepted acute manifestations of Lyme disease.

A growing number of medical centers have described chronic manifestations of Lyme disease.

Some doctors continue to ridicule or reject the existence of chronic manifestations of Lyme disease.

Do you know a doctor who has ridiculed or rejected the existence of chronic manifestations of Lyme disease? Please join the conversation in the comments below.

This is one of a series of short videos to explore topics I have seen in my practice. Dr. Daniel Cameron. #LymeConversations
... See MoreSee Less

 

Comment on Facebook

Yes, all the doctors at Caremount, no matter their specialty don't believe in chronic Lyme, o\r are too afraid to speak of it. I can't even speak of it, not a word. One doctor started screaming in my face - reciting CDC.

Why is it Drs acknowledge the existence of subjective/invisible/unproven pain conditions such as fibro and ME and are willing to dish out cocktails of painkilling meds to their patients over years causing destruction to their bodies and minds... However these same clinicians refute the existence of lyme and frown upon it's often successful treatment via a few months of antimicrobial therapy is baffling.

I tried to comment here but my extensive text comments regarding my experiences at Stanford were eliminated as I was typing them...by FaceBook?

OMG do I ever! My general Practitioner, an infectious disease doctor, a dermatologist, and KU Med Center, twice. Feel so alone.

I went to several doctors who all told me I was depressed and was a hypochondriac and that’s what was causing my symptoms. Even had one tell me I should admit myself into a mental hospital... then I found a doctor that believed me and started treating me for Lyme and I’m doing much better - not out of the woods just yet, but better.

idsa doctor i was referred to said, "i dont do that". Neurologist a few years ago said (after looking at my bloodwork) "but my IDSA friends don't believe in chronic lyme". Easy to not believe till you get it.

Diagnosis consisted of: Nothing, fibro, personality disorder and physical exertion intolerance syndrome 😂😂

yes they love the delusion of parasites label even with a possitive lyme and strongyloides test,

Yes quite a few thank God for doctors such as you

Yes I do Dr Cameron Now that I have to go for knee replacement surgery and all the other doctors and tests I have to do for medical clearance you have no idea how everyone blows me off when I say I have disseminated Lyme disease and confection

I ended up in a conversation with a teenager who struggled with lyme and an ER doc at the gym. I shared with the teenager who I knew had/has lyme that I was going through treatment for chronic lyme. The ER doc proceeded to jump in and ridicule me for believing in chronic Lyme disease. He told me that there is “post lyme sequelae” but after 21 days of doxy there is never the possibility of a chronic infection and prolonging antibiotics is never necessary. I told him I disagreed strongly and have seen evidence of people being helped with longer term treatments as I personally have gotten much better over the last few months. He then told me that Lyme literate doctors are just quacks who are ripping off middle aged women who just need to get laid. I made sure to specify that I’m certainly not a middle aged woman who needs to get laid...😛 A few weeks later I ended up in a conversation with a new guy at the gym who happened to be a head and neck cancer doc who just relocated to my area. He was the exact opposite of the ER doc and wholeheartedly believes in chronic lyme. He stated that any doctor denying chronic lyme isn’t keeping up with literature or listening to patients. It was nice to see a doc from a normal hospital setting who actually cared and believed!

In the Netherlands they’re all rejecting and ridicule breakthroughs and new information. Silly doctors, refuse to see the reality!

Yes, including ID doctors especially in South east Texas. They say it doesn’t exist, it’s in your head, it’s something else, no way can you have Lyme. The Texas Medical Association refuses to stand up for those that believe, they do everything to yank their medical license, they force them to live a lie. We are so backwards, especially medically speaking, in south Texas that you can only laugh at their utter ignorance

https://www.abc27.com/news/state/pennsylvania-house-passes-bill-for-full-lyme-disease-coverage/1921435200

Many are afraid to treat outside of the box insurance companies and medical boards have created.

Doctor Charles Kutler in Kingston, NY.

Mayo is terrible for it and gunderson neurologist

Yes I do!

Yes. The progression is horrible.

Specialists are the worse

I believe that doctors who ridicule and deny chronic Lyme's disease are the ones that deserve to be sued in court due to negligence. People here are dying due to doctors ignorance and negligence and it needs to stop!

+ View more comments

Was Babesia considered when you were diagnosed with Lyme disease?

Babesia is a parasitic infection harbored by the same tick that transmits Lyme disease.

Babesia can present as a life threatening or an asymptomatic illness

Babesia can be confirmed with a thick smear, PCR, or antibody test. Like Lyme disease, there are cases that cannot be confirmed with a laboratory.

The high frequency of a concurrent Lyme disease and Babesia reminds the doctors of importance of considering treating for both tick-borne infections. “Up to a fifth of Lyme disease patients experience concurrent babesiosis” writes Diuk-Wasser from Columbia University in the journal Trends in Parasitology.1

Babesia may present with nighttime sweats half the time. The remaining patients with Babesia do not present with sweats.

Antibiotics for Lyme disease are not effective for Babesia. Instead, a combination of atovaquone and azithromycin has been effective.
Was Babesia considered when you were diagnosed with Lyme disease? Please join the conversation in the comments below.

This is one of a series of short videos to explore topics I have seen in my practice. Dr. Daniel Cameron #LymeConversations

1. Diuk-Wasser MA, Vannier E, Krause PJ. Coinfection by Ixodes Tick-Borne Pathogens: Ecological, Epidemiological, and Clinical Consequences. Trends Parasitol. 2015.
... See MoreSee Less

 

Comment on Facebook

No and I am desperately trying to get into infectious disease to be tested. 1st infectious disease told me they only see hospitalized patients 2nd one told me they don't see lyme patients.

The Atovaquone ( liquid gold) has been amazing for me! I take it with a fat as prescribed along with Doxy, and Azithromycin. Plus my diet change which I was doing as a suggestion from the CEHF. My LLMD also gave me a list of foods. Vitamin supplements are a must! I'm getting better, almost a year ( July) . Can't imagine where I would be now! If your getting treatment for Bebesia, Morgellons, and Lyme disease stay the course it's worth it!

Yes I also had a comprehensive treatment for lymes and my symptoms persisted. Based on the type of symptoms I was experiencing we felt it appropriate to treat fr Babesia. I’ve had a great improvement in my symptoms since starting new meds.

It never showed up in my bloodwork and I didn’t have symptoms until 2 years after my initial Lyme diagnosis. I was diagnosed and treated based on my symptoms.

I was diagnosed with Babedia and Bartonella along with chronic lyme..I took plaquenil and Azithromycin for a year along with my doxy ..I had night sweats , air hunger and more..helped me a great deal..been off of plaquenil and Azith for 3 months and its starting to come back! So frustrating

After years of misdiagnosis a dr did a blood test for Lyme and babesia. CDC called to say I was positive for both. No dr in my area would treat Lyme other than three weeks doxy. Said babesia would clear itself. Luckily I found a PA whose dad died of early Lyme dementia and she agreed to treat me. After two years of abx and anti parasitic meds my fourth blood test shows bands indeterminate. Before they were triple and double pluses. I know I’ll have permanent neurological problems to deal with and joint pain but thanks for a caring health care provider I’m better. This PA is an angel to me❤️

A specialist had suspicion that I had Chronic Lyme disease. With lab testing, both myself and my toddler tested positive for Babesia Duncani (WA-1), negative for the other strain Babesia Microti. During my years of treatment for both Lyme and Babesiosis, we also treated for Bartonella based on symptoms. I can’t tell you for sure which infection specifically caused which of my symptoms but a multitude of medications really helped me. (Had brain fog, memory issues, weakness, speech difficulties/word search problems, facial numbness, extremity numbness/tingling, Bart marks, feet pain, severe fatigue and some other things.). My daughter was also treated and drastic improvements were seen.

Does babesia usually (or sometimes) cause Macrocytosis?? (Would GREATLY appreciate an honest answer to this!!)

My LLD stated that I had babiesia FISH. I have not heard of this before so it leaves me wondering what I am fighting. He perscribed the above ABX'S and later different ones. I ended up with a PICC line pushing rocephrin twice a day for five months. I presently treat mainly with TRUE RIFE and RNA RESULTS sprays. Yes, I detox three or four times a week. Presently also taking vit D and B-12. I use VSL #3 for a probiotic....fatigue and pain still out of hand most days.

I wasn’t diagnosed with Babesia until the following year. I was put on Mepron, Azithromycin, Cipro , amoxicillin and Doxycycline. I turned a lovely shade of yellow and was even more sick. I had to stop... since then I have treated myself with Buhner protocol.

The medications are hell to be on but we have no choice

Mine was considered and diagnosed along with Bartonella and Barbesia as I had air hunger, night sweats etc

Ticks are neuro, (brain and spinal cord), cardio, kidney and liver toxic cesspools and approx 99% of docs don’t know how to diagnose 12 of the most common tick born diseases in the US.

No. It was NEVER considered when my son was diagnosed (I could hardly get them-HMC Camp Hill docs- to test him in 2010 for lyme over the course of more than a year.) Lyme- and who knows what ever else-developed into full blown PANs.

My current dr is starting me on mepron, Bactrim DS, bactrim and plaquenil for Lyme/ babesia . Is this also a good treatment ?

Yes, it was considered the first time I saw my LLMD because I had pronounced air hunger and hadn’t been able to take a deep breath in 2 years. I’d tested negative on a military lab’s “Malaria/Babesia” test and a civilian hospitalist in a prominent hospital told me it was “too unlikely” that I had Babesia given that “nobody here thinks you have Lyme.” (I was also negative on blood and CFS Lyme screening tests.) At that point I had several dozen symptoms, including brain lesions. I’m pretty sure I have B. Duncani because even Mepron w/ another antibiotic fails to resolve it. I’m on my 3rd relapse in the last year.

Lyme doc says i‘m ill with babesia too ( bartonella, Lyme, mycoplasma pneumonia are there too). Three days without antibiotic- best whishes from Lyme hell. Cannot threat babesia, healthcare difficulty.. without threatment whole time, low bloodpresure and slowly heartbeat, headache and pain pain pain, back in 2-3 days, Lyme Arthritis back too... Babesia illnes started after a blood transfusion... Lyme- ticks, bartonella- Cat fleas ...

No, it was not and I had all the textbook symptoms

Yes, I was tested for Lyme and four common co-infections. I had 3 including Babesia.

Babesia is the most common co-infection among Morgellons patients.

My LLMD considered babesia after I was aggressively treated for Lyme and bartonella, but still had some severe symptoms. I had some very weird nerve symptoms that stumped neurologists, plus hot flashes (not like menopausal hot flashes) and sweats that followed the "attacks" of nerve pain. Those symptoms very quickly improved when I started taking plaquenil and later on, malarone. It took about a year for me to say that the symptoms were gone, although from time to time, they still pop up, but not nearly as bad as they used to be.

No, it wasn’t 😢 but now that we are working with an llmd she is currently getting treatment and what a transformation in her so far. Her sweats are gone! She’s had selective mutism since 2008 and lately she’s been trying to talk more at home.

Coinfections were not even brought up unfortunately. So who knows what’s crawling in me 🙄

Please also consider that lowered blood volumes and POTS are pretty common w babesia...

Alternative to Atovaquone-praguanil?

+ View more comments

2 weeks ago

Dr. Daniel Cameron

Non-restorative sleep and chronic unremitting stress in Lyme disease.

Dr. Bransfield described non-restorative sleep and chronic unremitting stress in Lyme disease.1

“Chronic unremitting stress is often associated with hyperarousal and emotional symptoms such as depression, anxiety, depersonalization, mood swings and psychosis.”

Treatment can help, writes Dr. Bransfield.

“remediating these symptoms can improve immune functioning and resistance to infection which may reduce disease progression and contribute to recovery.“

“Successful psychiatric management can sometimes result in reduction of infection and successful reduction of infection can sometimes result in reducing psychiatric symptoms and reducing the need for psychotropics.”

Have you had problems with non-restorative sleep or chronic unremitting stress in Lyme disease? Please join the conversation in the comment below.

This is one of a series of short videos to explore topics I have seen in my practice. Dr. Daniel Cameron. #LymeConversations

1. Bransfield RC. Neuropsychiatric Lyme Borreliosis: An Overview with a Focus on a Specialty Psychiatrist's Clinical Practice. Healthcare (Basel). 2018;6(3).
... See MoreSee Less

 

Comment on Facebook

I guess I've thought that Lyme can lie dormant and then be triggered by stress. Stress then continues to be a problem. Why would psychiatric medicine reduce infection?

Yep huge issue but no Longer responding to treatments never rested at all insomnia , even with sleep never rested .

I was diagnosed with severe sleep apnea have been on CPAP for years . Then was diagnosed with Lyme & bart. Most of my apneas were central apneas so does this mean it was from the Lyme ? I have been treating Lyme for 2 years I am much better but still do not feel rested upon waking each day.

I told folks that I hadn’t slept in years and even decades and they didn’t believe it. My sleep study proves that I had sleep apnea, restless leg syndrome, and no Delta for sleep was recorded meaning I don’t get Restorator sleep. I wake up as tired as when I go to bed and my body doesn’t heal up from injuries or surgeries well.

Dr Cameron, you told me that my body was stuck in fight or flight mode trying to find the bugs but unable to find them. That would go along with the “hyperarousal” that prevents non restorative sleep, wouldn’t it?

Dr Cameron are you having any success with the Dapsone protocol?

I use to drink like a fish for a few hours of relief and knock myself out .

Casey Rosner Fillian

I deal with but am getting much better since starting treatment with depersonalization.

Is this a lack of REM sleep?

+ View more comments

3 weeks ago

Dr. Daniel Cameron

Letting go of fixed ideas on Lyme disease.

Here are a few fixed ideas on Lyme disease drawn from the Infectious Diseases Society of America (IDSA) Lyme disease guidelines.

Chronic Lyme disease does not exist
Chronic symptoms are nothing more than the aches and pains of daily living
A single 200 mg dose of doxycycline for a tick bite is effective
A single three-week course of antibiotics is highly effective
Retreatment is ineffective

These fixed ideas are not supported by the evidence according to the International Lyme and Associated Disease Society (ILADS) Lyme disease guidelines.

Have you run into fixed ideas on Lyme disease? Please join the conversation in the comments below.

This is one of a series of short videos to explore topics I have seen in my practice. Dr. Daniel Cameron. #LymeConversations
... See MoreSee Less

 

Comment on Facebook

Thankfully, I have a GP that believes I have treatment resistant Lyme but sadly, has no idea how to treat. Even Mayo is unwilling to accept the diagnosis.

A supposed expert in infectious diseases recently told me idea of being unwell with co infections is a load of rubbish ... Why dismiss evidence so profound as personal experience.

They re only testing for Lyme bacteria. Why wouldnt/couldnt there be coinfections?

Thank you Dr. Cameron for bringing these things to light!

I'm sorry but I dont think your hitting on all cylinders sir. I'm with lymes 13 years, doxy dont help my internal medical Dr. says I'm chronic and is a blood specialist and knows more about lymes than you do You are the type of Doctor that people should not be listening to.

Joan Durkin thanks for posting this. As I said before, because ticks were not an issue up here until more recently, doctors up here seem to neglect it when diagnosing and that is not helpful.

My doctor says I don’t have it but I have multiple positive bands and the symptoms. So explain what else it could be.

Vickie Cisneros....

Until they have a family member with chronic Lyme they will never understand. So little education on LD and co-infections.

Just wait until an IDSA biggie gets Lyme that goes untreated for years.

My pain management doctor does not believe in chronic Lyme and told me to stop reading stuff on the internet. 😂

Well I am so Glad he never had to live with Lyme ... Because if he did he would be like the rest of us . trying to find help anyway we could.

+ View more comments

3 weeks ago

Dr. Daniel Cameron

Can caregivers of Lyme disease patients suffer high caregiver burden?

Pediatric acute-onset neuropsychiatric syndrome (PANS) and Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS) have been described in children.

Lyme disease patients share very similar neuropsychiatric issues with PANS/PANDAS.

Could caregivers of Lyme disease patients suffer high caregiver burden described by PANS/PANDAS?

“PANS caregivers suffer high caregiver burden.” writes Frankovich from Stanford University School of Medicine PANS multidisciplinary clinic based on 187 subject. 1

“Neuropsychiatric disease severity predicts increased caregiver burden.”

“Caregiver burden tends to decrease over time in a group of patients undergoing clinical treatment at a specialty PANS clinic.”

I have seen caregivers of Lyme disease patients suffer high caregiver burden?

Have you seen caregivers of Lyme disease patients suffer high caregiver burden? Please join the conversation in the comments below.

This is one of a series of short videos to explore topics I have seen in my practice. Dr. Daniel Cameron. #LymeConversations

1. Frankovich J, Leibold CM, Farmer C, et al. The Burden of Caring for a Child or Adolescent With Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS): An Observational Longitudinal Study. J Clin Psychiatry. 2018;80(1).
... See MoreSee Less

 

Comment on Facebook

havent you heard? lyme patients dont need caregivers, theyre fine! errrrr

I was reinfected last year in May. I cannot get better because I am the care giver of my congenital Lyme son who is 4 almost 5. His treatments and appointments in combo with mine. The stress of trying to find a pediatrician that understands this let alone go along with llmd and Then be on board with the vaccination controversy is devastating. Then to top it off the stress of me being a stay at home parent ( couldn’t work if I wanted to now) with one income and paying all out of pocket for our llmd four hours from our home. Yeah I’d say being the caregiver is a burden........

Amy Jo Wiester Has to be hard to see your son go through this. I hope you find an answer... I've dealt with this for 35 years and cared for and watched my husband die of it and have his Lyme and Cos & Neurolyme. I am alone, family doesn't get it, will die mostly alone unless I win the lottery to afford another LLMD to get me in remission. The stress is awful, I know it well.

Cheri 🙄🙈🙁😖you help keep me "normal" and I thank u for that ❤🤣

Amanda Waldron I don't ever want to burden you 💕

+ View more comments

3 weeks ago

Dr. Daniel Cameron

To know Lyme disease is to know medicine.

Sir William Osler, the father of American Medicine, once stated that to know syphilis is to know medicine.

Decades later, a tick harboring a wide range of human pathogens was discovered that would lead to a wide range of manifestations.1

Dr. Bransfield reflected on the challenges getting to know Lyme disease in an article titled Neuropsychiatric Lyme Borreliosis: An Overview with a Focus on a Specialty Psychiatrist's Clinical Practice.2

“He who knows Lyme borreliosis knows about medicine, neurology, psychiatry, immunology, psychoimmunology, neurochemistry, ecology, epidemiology, entomology, law, politics, and ethics.”2

Do you know medicine now that you know Lyme disease? Please join the conversation in the comments below.

This is one of a series of short videos to explore topics I have seen in my practice. Dr. Daniel Cameron. #LymeConversations

1. Burgdorfer W, Barbour AG, Hayes SF, Benach JL, Grunwaldt E, Davis JP. Lyme disease-a tick-borne spirochetosis? Science. 1982;216(4552):1317-1319.
2. Bransfield RC. Neuropsychiatric Lyme Borreliosis: An Overview with a Focus on a Specialty Psychiatrist's Clinical Practice. Healthcare (Basel). 2018;6(3).
... See MoreSee Less

 

Comment on Facebook

I think it is a shared experience of all Lyme disease and co-infection sufferers that we become experts ourselves, accumulating endless reams of information to navigate this 'do it yourself' illness. I'm sure the information shared in the various Lyme communities I belong to has helped save my life, as well as the help I receive from the LLND who leads my treatment. And you're right, we end up knowing about so many different aspects - political, ecological, entomological, medical... and so on.

I would rephrrase: " To know Lyme or syphilis, is to know how little doctors know."

I know more about lyme than any of the doctors i have gone to

Look up congenital syphilis.. notice they say it either shows symptoms right away or later in life at puberty. Sounds exactly like congenital Lyme.

Well most of patients end up going to doctors of the specialties you list for treatment whether or not they have their diagnosis or not: cardiology, infectious disease, psychiatrist, immunologist etc. So yes we learn a lot about medicine, trial through fire.

My allergist said the exact same thing to me years ago.

My ILADS doc has more of a whole body understanding than any doctor I’ve ever seen in my life... neuro, gut, endocrine, blood, muscles, joints, etc.

He also quoted, “listen to your patient, (s)he is telling you the diagnosis.” Very pertinent for borreliosis and other pathogens 🦠 🧫🔬👨‍⚕️👩🏻‍⚕️

So howe come that syphilis can be treated but not borrelia?

+ View more comments

Load more