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.

Sound sensitivity in Lyme disease.

Fallon and colleagues described sound sensitivity in nearly half of their Lyme disease subjects in their 1992 paper in Psychiatric Quarterly.1

“One boy developed sound sensitivity so severe that ordinary conversation was deafening to him; he wore head phones and put pillows over his head to block out the sound.”

“To one woman even the sound of another person's breathing seemed unbearably loud. In her case, the sound sensitivity also included vertigo, nausea and nystagmus in response to sounds. Any sudden sound, like the phone ringing, and certain household sounds, like the running of tap water, could cause her to fall or retch. This peculiar short-circuiting of the inner ear's auditory and vestibular functions is known as the Tullio phenomenon.”

Tullio phenomenon had typically been seen in syphilis.

Have you ever been sensitive to sound? Please join the conversation in the comments below.

1. Fallon BA, Nields JA, Burrascano JJ, Liegner K, DelBene D, Liebowitz MR. The neuropsychiatric manifestations of Lyme borreliosis. Psychiatr Q. 1992;63(1):95-117.

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Yes! I can hear individuals eating their food across restaurants and it’s maddening. Or if there are a few people talking at work, sometimes it seems so very loud even though I’m sure it’s like any other day.

Sudden / unexpected loud noise and I practically jump out of my skin. I have an extremely exaggerated startle response to noise. And repetitive sounds are unbearable. Some days just regular sound is literally painful

I have said to my doctor I can hear for days. Like a super hero. This is not all the time though. Other times I also hear a radio playing that is not there or a crowd of people all talking at once that is not there. My daughter has auditory hallucinations but she "hears" 4-6 people calling her name. I've heard my name called by a non gender voice and no one's around. Talk about anxiety and feeling crazy.

Since Lyme I’m hyper sensitive to sound, smell, food, and chemicals

This was one symptom that is hard to explain to others, and really contributed to not wanting to be around others. It isn't as bad as it was, but still have it from time to time...

My damn life. I can barely function some days!

The sound intolerance for me, goes as far as Misophonia - poor hubby might be eating a couple of nuts or crackers and the sound of his chewing has me to the point of "enraged". I'm grateful to have found this out before it came to actually harming him (it was touch and go for awhile 💔😟). I'm able to take precautions now and relieve just how aggro (SNS hyperactivity -fight) I can get.

On a bad day. Light and sound

Boy do I know this all too well, I have at times been able to hear sounds that are so faint it’s enough to want to die. Voices on phones and motors in refrigerators sounds like fright trains. So grateful that that symptom has subsided!

Yes. Sensitive now to sound, chemicals and meds.

Sound sensitivity was one of my daughters first few symptoms, along with smell and skin sensitivity. She also had huge behavioral changes, as well as steady declines in cognition and memory. It took me (and I say me because doctors had no idea what was going on, and were no help-even neurologists at one of the best childrens hospitals in the state) nearly 2.5 years to realize she had confirmed by Western Blot. Sure wish one of the 12 or so docs we saw would have known this!

I definitely had this. At my worst, I couldn’t listen to music as it felt overwhelming, and I couldn’t stand any conversation above a soft voice. I was especially sensitive to high pitched noises. Any sudden noise was intolerable and the tinnitus was relentless. It lasted to some degree for years, even with treatment.

Sound, light and movement sensitivity.

My ears are constantly plugged. They ring all the time. I went to an ENT. He said “your ears aren’t plugged”. My eyes are tremendously affected by lights. I went to Target on June 3, 2017. I had some type of mild seizure while in there. It happened again at Michaels on thanksgiving 2017. I can’t bring myself to walk back into Target yet. And I just started going to Michaels again. But I wear a hat and glasses. Does anyone else have this happen or has happened before?

While being treated for neurological symptoms of Lyme Disease, I experienced auditory hyperacusis, particularly low frequencies, and also became hypersensitized to vibration. Along with this I also experienced multiple forms of tinnitus, in both ears or individually including very high pitched repetitive clicks, medium frequency warbling, constant pitch at varying amplitudes at approximately 6kHz and 8 kHz, and pulsatile tinnitus (hearing my blood flow). Conversations in my vicinity at normal volumes were incredibly distracting, especially plosives, which sort of had the effect of sounding like a heavy door closing quickly with each utterance. I experienced also musical auditory hallucinations that occurred when my senses were exposed to random vibrations. When I would be mowing the lawn and my foot was resting on the drive clutch, I would "hear" the most amazing electric guitar soloing as long as my foot was on the clutch and the engine was running. It was like hearing Eddie Van Halen on steroids. Fantastic "shredding" at humanly impossible speed. As soon as my foot came off the pedal it was gone. My brain was obviously organizing the random vibrations from the machinery coupled to my ears via bone conduction. Another example with different results (more like The Allman Brothers playing) was with the window air conditioner on. (This symptom is the only one of many dozens I experienced during treatment that I can say I honestly miss!). Another interesting auditory effect I experienced that I understand might be fairly common among neuro Lyme patients is hearing a low rumbling sound indoors that cannot be heard outside, nor associated to any particular mechanical source inside the dwelling. I can describe it as sounding like a diesel locomotive idling about 1/4 to 1/2 mile away. It was very faint and I could only sense it late at night when all else was quiet. In researching this phenomenon I did come across a study done in Germany where a similar thing was happening to office workers. It was determined if I remember correctly that vibrations from a nearby highway were coupling into the framework of the building, and that walls and ceilings were acting as transducers (sort of like huge subwoofers) to couple the extreme low frequencies into the airspace in the occupied areas and some people would hear it. I live approximately 1/4 to 1/2 mile from a well traveled interstate highway, and I surmise the same effect happens here, and I was aware of it when experiencing the hyperacusis. Other than some tinnitus, I no longer experience the other symptoms, most of which resolved within the first two years of continuous oral antibiotic treatment.

My husband experiences this. It is difficult to go to the movies etc. He brings ear plugs just in case to different events for when this happens. Blah.

Yes, the sound of motorcycles, cars, trucks, never used to bother me.. now it’s like a knife cutting through my brain.. also repetitive noises..

Ear issues is how I know a flare is coming on. Fullness in the middle ear (sometimes pain) and when I was first infected, tinnitus. Fortunately the ringing is gone and the middle ear feeling plugged up is gone most of the time but there is still a minor earache occasionally. My most unusual symptom is auditory hallucinations that happen during a flare. I use a white noise machine at night (which was really irritating at first but I finally got acclimated to it) and only during a flare does it sound like there is a talk radio show or TV going on in the background. It's like my brain is determined to make sense of the white noise it's hearing. I did go to the audiologist and my hearing is OK.

My daughter has this...every sound sends her over the edge. Also smell sensitivity. It makes life very hard for everyone.

Ativan really helps me with this symptom.

Yes it’s one of my worst symptoms. I sit in silence most days because of it.

Yes. So many things seem loud to me and I can hear things coming before anyone. Has it’s pros and cons.

I used to bring earplugs everywhere.

This is totally true for me. This has also been an overall indicator of how I’m doing — the noise sensitivity is definitely worse on days I’m having more nerve pain...I think it’s the nervous system being overly reactive from the Lyme...

My first few months with Lyme I heard music coming from other rooms. I would get up and try to find the source (which did not exist) I heard full songs and all of the words.

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Do the Right Thing for Lyme disease.

The right thing for individuals with Lyme disease has not always been clear.

Doctors once diagnosed adolescents and young adults as having Juvenile Rheumatoid Arthritis (JRA) until the discovery of Lyme disease.

Doctors once diagnosed patients with psychiatric conditions until the discovery of neuropsychiatric Lyme disease.

Doctors would like to have a reliable test. We don’t.

Doctors would like to have a treatment that prevents long-term manifestations of Lyme disease for everyone. We don’t.

What is the right thing for Lyme disease? I find clinical judgment helps me do the right thing.

Has your doctor found if difficult to do the right thing for Lyme disease? Please join the conversation with others in the comments below.

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Shannon this is Julianna’s Doctor but this post speaks to the Juvenile RA

Thank god you put it in a way that people can understand. It is an incredibly complex disease and treatment of any kind is tough.

I have neuropsychiatric Lyme and I am lucky to have a great psychiatrist (who doesn’t really agree with my diagnosis) but he has helped me a lot. But I soooo want to get off psychotropic medication but any time I try to treat Lyme and co (I have over 10 co infections including Rickettsia, Babesia, Bartonella and more) it triggers major unrelenting anxiety. Not sure how to over come this. My GP was not supportive and basically told me pull myself together and get on with things. My ID Dr wants me to start LDN but again I’m afraid of it triggering major anxiety which terrifies me. So I try and live with my chronic Lyme symptoms which are many besides the psychiatric stuff. I just want to get healthy again. I’ve been chronically ill for over 20 years. How to move on?

It took 3 years and many doctors appointments to find find a Lyme diagnosis for my daughter! All doctors need to educate themselves!


When you mention Lyme or chronic Lyme most mainstream doctors just laugh at you. It’s been horrible!

Praying for enlightenment and advancement of this prolific and devastating disease/syndrome for EVERYONE 😇

Caitie Ann 💚

Tell that to a bureaucrat

For several years Lyme Patients were over treated with overdose of oral antibiotics and IV antibiotics. This led to problems lasting for life.

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Can Lyme disease lead to a “new normal”?

Have you ever wondered what are patients with chronic manifestations of Lyme disease are thinking?

“our participants often depicted Lyme disease as a marked turning point by contrasting “who they were” before and after the onset of their illness.” writes Rebman from Johns Hopkins based on interviews with 29 patients.1

She added, “It also implies a distinct loss that triggers shifts in fundamental ways of how patients see themselves in the world.”

The concept of a “new normal” state has been described in other chronic disease settings such as rheumatoid arthritis according to Rebman.

I have Lyme disease patients who describe a “new normal” state.

Have you know someone with Lyme disease whose has described a “new normal” state? Please join the conversation with others in the comments below.

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Lyme stripped me of myself and family. 20 year marriage dissolved, ability to work gone, friends gone.... it impossible to go back to my real life. Now I just try and survive and make it till bedtime.

Hmmm, more like a NEW HELLISH state to me & nothing normal about it.

Yes. My new normal is praying God would heal me or let me die. This is no life. Has caused mcs, food sensitivities, brain fog, cant control emotions. There is NOTHING normal about my life. Cant even let my own kids in my house. Also real.sick of people telling me what I should be grateful for

Absolutely. Most of my losses are relatively invisible. But my ruined left knee is a constant reminder even on the best days. I’d say I am lucky that after years of (delayed) treatment am usually able to do as much as I can, but I know it could change in a heartbeat.

It’s new to a point but it will never be normal. I call it living dead.

In 2008, about 8 months before I turned 50, I decided to fulfill a longtime goal of doing a bodybuilding competition before the big 5-0 that November. Even though I'm a personal trainer, I hired someone to coach me and pushed myself harder than I ever had. I remember working out that summer and thinking, "My body does whatever I ask it to, and aside from the soreness from working out, I recover and feel stronger than ever. Someday it won't be that way anymore." I was imagining the limitations of old age, not illness. Within a couple of years, I was experiencing pain all over, all the time. By late 2012, I could no longer work. I've gotten used to being in constant pain, but at the same time I'm just so sick of it. Knowing I'll probably live the rest of the my life this way is depressing.

I definitely see myself this way - who I was and who I am now. I miss my old self so much. I am coming to accept that this disease has done permanent damage. Some days I can find contentment and other days I feel so sad and frustrated.

It’s taken my family, destroyed relationships, drained bank accounts, it’s fucked my whole life up. Getting support sucks.

The worst is when people think u r normal but yet feel ill on the inside ! Once u have this your new normal is basically slow tired and achy mostly

It's a new normal that came on abruptly. I am still grieving the old self, the self that could dance all night and go hiking for miles. There was no easing into this life. And I'm really not ready to give in to this being "normal." I still want to be rid of this infection.

And it's extra hard because I am getting up there in age and I probably would have had some level of joint pain fatigue headaches less energy but I know what disseminated Lyme disease did to me I don't need any haters out there to tell me otherwise God bless all of us that suffer....may we have more good days than the awful bad days

Yeah, sadly. I used to be mentally sharp, have a great memory, be busy and active, and get a lot done. Now, I’m forgetful, sluggish, often irritable, and have less than half the capacity I used to.

Yes Dr Cameron that's me After all these years of battling disseminated Lyme disease and confection I have had to say out loud everyday this is my new normal It really su*is but that's the way it is I HATE certain people and doctors that say differently

Wish John Hopkins would focus on serious high tech scientific research a cure.. .like trials in kick starting the immune system,like what happens in other scientific disciplines. With respect these soft sociological pieces of research contribute nothing. The " new normal "also implies ...well get used to it.

Sometimes I am upset about loosing the person I was but this concern mainly the physical capacity. Without Lyme and friends I would have never opened my eyes. Now I eat organic, having new and better friends (all the other left as soon I became bedridden), I follow medical summits online with great interest, learned a lot about heavy metals, EMF, functional medications, genetics. Wrote 2 books about lyme as it did not really exist in my country and we were all lost. (They are now in 4 medical libraries and future doctors have access to it)

My sole survival skill was precisely this. I had to create my “new normal” in order to survive the chronic vertigo, ocular scars, and aching joints. It is what it is. No treatment anymore. I’ve dumped thousands into this nightmare, and learning to accept it has been the best treatment.

Yes. In a 24 hour period over 20 years ago. I changed as a person. I learned to try and live with what I call a new normal or a new baseline of health.

Yes. I’ve come to terms with the fact that I will never be completely my old self. I will have moments and days when I am just off. My nervous system will never completely recover. My ears ring non-stop. BUT, it’s okay. I am so much better that I kind of don’t even care about these nagging issues.


Yes, anyone will be left with a 'new normal' if their health care providers don't care, it doesn't matter if you were in a car accident or have an infection, if your doctor's don't give a shit, you won't be the same after.

I'm wondering, are there any documented cases of Lyme patients who were undiagnosed and suffering for a long time (e.g., a few years), who were subsequently diagnosed and treated (with some antibiotic regimen) and eventually made a complete recovery?

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Is physician autonomy to treat Lyme disease dead?

I am your host, Dr. Daniel Cameron.

Evidence based guidelines differ between the IDSA and ILADS. I am an author of both of the ILADS evidence-based guidelines.

Guidelines are intended to help physicians understand the evidence and not to replace autonomy.

I find my autonomy to treat patients with Lyme disease questioned by insurance companies and some of my colleagues.

I am happy to say my autonomy is alive and well.

Do you know a doctor’s whose autonomy to treat Lyme disease has been questioned? Please join the conversation with others in the comments below.

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Dr Cameron, a group of us created a petition a while back which looked at the way one guideline group "selects" which data it uses. The petition was aimed at NICE (the UK group) but is the same for any committee doing similar work. The primary issue is that the process that they use is flawed. I'll give an example below. We posted the petition when the guideline was at the draft stage and we know that both the UK government and NICE saw it (as we had contact from them). The final guideline included addition data (Fallon papers) and as this data had previously been rejected, we think that it was probably included to pacify or to "prove" that Lyme is still easily treatable. We still stand by the fact that all of the "accepted" clinical trials - by their very criteria - will have excluded subsets of Lyme disease patients including those with additional co infections. If we were to consider that this committee was asked to review the data on Thalidomide in the 1950's we would see that they would exclude any animal studies (as is their standard procedure). At this time it would have been those studies that showed the deformities as there wouldn't have been any gold standard randomised, placebo controlled studies (which is ALL they will accept). They would have had to conclude that there was NO evidence to suggest that Thalidomide posed any danger. How do they not see the problem with this process? This is a world wide issue and we appreciate any support that we can get to put pressure on the UK government (as a starting point). The petition is quite long but fairly easy to read. It has over 10K signatures to date - but it may never be enough. We hope that you will help us to push this issue by signing and sharing as widely as possible. Thank you.

And right behind it will be all of the patients who ran out of funds. It's been an interesting ride folks, but it's hard to believe it ends like this.

I definitely think this is the dilemma why doctors feign ignorance and don't treat they fear retaliation and fear being fined or licensure removed if alleged overprescribing antibiotics that need to given for example

We have zero MD's in the entire state of Oregon who will treat patients with Lyme. If they even prescribe 3 weeks of ABX, they are turned into their medical board for review.

Thank you for fighting the fight. There are so few dr’s. And SO many people who need them.

Thank you for your autonomy 😊👍👏

The one doctor who helped us with our infections was hounded and harassed out of practice by his colleagues and college here. I know many of his patients who won't go to the hospital anymore, they've been treated so poorly by the remaining physicians.

Illinois just passed legislation to protect doctors treating patients for Lyme a few weeks ago! What I am looking for is some succinct information for my doctor to help her be my advocate for care now that she can be. Where is a good place for a caring physician to start to understand both the history of LymeCo and the best current practices?

Not dead but on life support while we fight this stupidity (including in the courts). Fortunately alternative medicine Drs are stepping up to the plate! And even better that herbs can manage many of the symptoms so yo don't need an MD!

Get the government out of the process and restore the doctor patient relationship .

No one treats in Massachusetts

excellent piece

Idiot Drs in KY! My son came from Colorado to drive me to your office in new York. I had been to several Drs before you. By the time I saw you I had been diagnosed with early dementia. 2 yrs of specialist and no one figured it out till you. The delay almost cost my life 😥 I have brain lesions and heart issues 2 arterial blockages bad arthritis. I am now 7 yrs later. Out of bed but still suffer thanks to the delay 😤

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2 weeks ago

Dr. Daniel Cameron

Chronic Manifestations of Lyme disease. Can medicine avoid or ignore them?

Lyme disease was recognized as an acute disease in the 1970’s.1

Lyme disease was recognized as a chronic disease in 1990 following reports of chronic neurologic manifestations of Lyme disease lasting up to 14 years.2

There are a growing number of other acute and chronic manifestations of Lyme disease described in the literature.

I see these patients in my practice.

Have you known a doctor who has ignored or avoided these patients? Please join the conversation with others in the comments below.

1. Steere AC, Malawista SE, Snydman DR, et al. Lyme arthritis: an epidemic of oligoarticular arthritis in children and adults in three connecticut communities. Arthritis Rheum. 1977;20(1):7-17.
2. Logigian EL, Kaplan RF, Steere AC. Chronic neurologic manifestations of Lyme disease. N Engl J Med. 1990;323(21):1438-1444.

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Would ignoring mean when a patient presents with a bullseye where she pulled a tick off ,asked about Lyme ,was sick and getting sicker, and Dr draws bullseye in chart with note and measurements that patient asked about Lyme but the Dr told patient “Lyme doesn’t exist in VA!!!”CRIMINAL in my opinion, NEGLIGENT at best , in my opinion, but the real CRIMINAL action, in my opinion ,came later when the Dr sat on the witness chair in court and said she didn’t do that note!!!!!!!!!!!Fast Forward to date- patient just survived open heat surgery ( aortic valve replacement /aneurism ) still suffers all kinds of cardiac, neurological, muscular skeletal multi system issues 14 yrs after the infamous negated bullseye. But even so the patient is a hero like all Lyme patients who persevere when they can to find and bring joy. That is all bc after the ridiculous missed diagnosis God lead us to an amazing Lyme Literate Dr/ Angel n NY who finally diagnosed her correctly all those years ago . He got her on the right road so her swollen and damaged brain didn’t fail her. Soooooooooo much story to tell but the answers is Yes a Dr IGNORED the obvious

My PCP is ignoring my issues. “You were on antibiotics, the Lyme is treated” No it’s not. I’ve declined after being taken off antibiotics, in constant pain again to the point I can’t have proper posture, cognitive decline and more. I wouldn’t wish this on anyone 😞

When I began developing flu like symptoms after a known tick bite (tick removed from my head after camping at Lake Shasta and was fully engorged) every Kaiser doctor (15+) I was seen by told me Lyme Disease did not exist in CA.

I had a tick bite in ny in summer of 1973by fall i was unable to function in college and drpped out of grad school. Fast forward to 2011. I was bitgenby a tick in 2 weeks was covered with tiny lime rash . First test was negitive for lyme another test 2 months later was very positive. Hadv5 weeks of antbiotic at that point. Was sick for 3 years. Spider bites respond with lyme symptoms.

Alan Steere is a menace to humanity and needs to retire or be bitten.

I've had numerous doctors tell me they couldn't find anything wrong. UCSF neck and spine center pushed me out the door, extremely rude. I showed up with notes in a folder to show them and they refused to look at it. My PCP told me to gather everything and put it in a binder and bring it with me to show them, they wouldn't even look at it. Then I went to Stanford when my PCP told me they had tested me for "everything"(?) and I was having constant ER visits and could barely walk. When I later asked Stanford doctors to test me for Lyme, they looked into it and saw no test was performed. Everything, huh? + Eliza, Indeterminate Western Blot. Told me I had a false positive first test Eliza. I ignored them, found a doctor who would treat the Lyme and Co infections, I'm almost back to normal but have residual pain that doesn't go away and have been blacklisted from pain management by Nazis.

Lyme was first identified overseas in about 1890, the first cases were seen in America in about 1910. Lyme has been treated in America since then. There is a lot of information on Lyme and actual treatment.

Just every single Oregon MD!

After being Dx w/ fibromyalgia in 2007 & getting worse by 2015. I was told by PCP, they do NOT believe in chronic Lyme, even after I had positive titers, but not enough by CDC guidelines. Finally this year after I requested a second opinion from another RA DR, began treatment. Thank God for that! in my 6th month of treatment

They can and do leave us to slowly painfully die.

In NM, a well known ID practice avoided treating LD patients who had been previously treated w IV antibiotics. I was personally told I did not have LD despite positive testing by WB at IGX and positive LUAT.

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2 weeks ago

Dr. Daniel Cameron

Lyme disease has been a perennial problem for medicine.

A growing number of chronic manifestation of Lyme disease have been identified including:

Lyme encephalopathy, neuropathy, demeyelination, and neuropsychiatric disorders, POTS AND PANS

Lyme disease patients can remain severely ill for months to years.

Lyme disease patients can fail treatment.

The tick that carries Lyme disease can also carry a growing number of co-infections including Babesia.

The spectrum of acute and chronic manifestations of Lyme disease continues to grow.

Do you agree that Lyme disease has become a perennial problem for medicine? Please join the conversation with others in the comments below

Dr. Daniel Cameron #LymeConversations

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Not so much a problem for medicine as for patients, who are being gaslighted at every turn. No Lyme meds for you without a positive Western Blot; but how about some antidepressants, Dear?

The current medicine model is supposedly evidence based. When you have an illness that evades testing in this paradigm, there's a license to ignore it, smile wide and say things like, "your tests are fine", deny insurance, and either treat symptoms only or infer that this is a sub group of patients who are all out nuts, and exist as a profession in glorious isolation. Thanks to you and all of the doctors who acknowledge there's a problem and actually seek to cure it. It is perverse and shameful that doing no harm has become equated with doing nothing when it comes to tick borne illness. The suffering is horrific and the all out lack of respect and assault on the dignity of Lyme patients, for whom it is documented suffer as terribly as other chronically ill patients, creates a full on PTSD effect for anyone who has suffered from Lyme in its chronic state. The perrennial problem is for the patients who were otherwise emotionally healthy before all of this started and then ended up with a double whammy.....chronic physical illness and deteriorated emotional health from a medical profession whose majority has negatively impacted perception around this disease and turned its back on them.

I've had enough of hearing that "patients can fail treatment." It's the treatment failing the patients. Maybe if we work on getting rid of victim-blaming language it will help the process a little.

Yes. Meanwhile in 🇨🇦 2018: "Minimum of 10.2 to 28-fold under-detection of Lyme Disease in Canada (3.6%-9.8% cases detected )" More on faulty testing & faulty treatment: Even IDSA main journal is now acknowledging faulty testing: As mentioned, more than just Lyme disease: NEW publication: 432 patients studied: Over 65% produced immune responses to MULTIPLE microbes. When tested against 20 microbes 90% of the IgM response & 97% IgG differed from healthy controls. 70% of those positive for Lyme disease were not considered CDC positive:

I think it’s a huge problem for doctors and patients alike. It’s very difficult for doctors to diagnose and treat an illness that health insurance will not pay for. This is why so LLMD’s do not accept insurance bc the companies do not pay the drs. Until there is further clinical trials and actual Lyme and Co infection tests made available so that we can all definitively prove we have Lyme the medical community will continue to listen to the CDC and be confused and act as if we are all nuts. It hurts my soul to think so many of these doctors can believe that these completely sane, active members of society just one day went nutzo for no apparent reason after having Lyme. This just boggles my mind. I try to stay positive and believe that we are turning a leaf and doctors are coming around, but it’s mostly orthopedic docs and almost never infectious disease docs.

I don't think it's such a problem for medicine, from their point of view. Mainstream doctors, clinics, hospitals and pharmacies are all making a ton of money off patients that keep coming back over and over again. They are diagnosed with all kinds of stuff. put on all kinds of medicine, see all kinds of doctors and have all kinds of surgeries as their joints and organs fail. They're sent to psychiatrists and psychologists, who also make a lot of money off them. Meanwhile, insurance companies won't pay for LLMD doctors and treatments that would really help Lyme patients. The Lyme patient's pockets are picked coming and going. For mainstream doctors, Lyme patients are pretty lucrative. When you think about it, we are cannibalized by our regular doctors and we are pillaged at the same time. It's a good deal for them and they can hide behind CDC guidelines, so they feel no guilt and are protected from lawsuits.

I would like to know if the constant testing for illnesses being done over and over by different doctors ,is mistrust in each other,or a way of of constant income for the profession as a whole? When I say we just ran that test ,I am met with " You need to have more of an open mind". I have become used to the idea of lyme and I make the best of it. I do have one good team that are always there for me when I need help. For each treatment,be it a nerve block or a nerve burn,I am the one making the call in the end. When it comes to the late stages of this illness pain seems to be the one thing that affects the body the most in all areas( at least for me). If we can deal with the pain so many other areas of problems take care of themselves. It affects so many parts of daily life ,and different illness caused by the bodies reaction to it..

Much misunderstanding, Dr Cameron, could be eliminated for both doctors and patients if we would stage Lyme more specifically as we do for syphilis. Primary, secondary, late latent, and neurosyphilis. Primary Lyme is EM erythema migrans at the bite site. Secondary Lyme is disseminated cutaneous Lyme blotches, Lyme arthritis, Lyme carditis. Neuroborreliosis or CNS Lyme (Banwarth Syndrome, Eastern Europe) was defined way before Dr Steere defined Lyme arthritis from Lyme, CN. Neuroborreliosis is one of the late stages of Lyme most difficult to eradicate or cure. I have a low threshold for starting iv ceftriaxone antibiotics for refractory L arthritis of knee, w large effusion, a septic arthritis, and/or neuroborreliosis, FOLLOWED UP w long term oral Lyme antibiotics for 8 - 12 weeks, at least 2 weeks beyond reversal of symptoms. Again, let's replace wastebasket terms like "Chronic Lyme" with the specific late Lyme syndrome by system or tissues attacked by the borrelias bacteria.

Yes it definitely is a huge problem. So many undiagnosed chronic Lyme patients who are extremely ill with many coinfections by the time they realize it’s Lyme but then no doctors that know what to do for it. Or that even believe it’s Lyme. It’s a mess!

Mainstream Medical Industry: "I'll keep you my dirty little secret..."

It's a boon for doctors - 52 before I found my first LLMD.

Joe Rocco



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2 weeks ago

Dr. Daniel Cameron

What are “spoonfuls of energy. “’Spoonfuls of energy’ has been described as an ongoing trial and error process by patients living with a range of chronic illnesses who have not returned to normal’ writes Rebman in the journal Qualitative Health Research.1

At least one of their 29 patients with chronic manifestations of Lyme disease referred to “spoonfuls of energy”.

“You’re going to get X “spoonfuls of energy” and I want you to think about how you’re going to use it? And then the price that you pay if you do want to go out and do those active things; this is how your body responds.” describes one of their patients.

I have patients with who find “spoonfuls of energy” helpful.

Have you found “spoonfuls of energy” helpful? Please join the conversation with others in the comments below.

1. Rebman AW, Aucott JN, Weinstein ER, Bechtold KT, Smith KC, Leonard L. Living in Limbo: Contested Narratives of Patients With Chronic Symptoms Following Lyme Disease. Qual Health Res. 2017;27(4):534-546.

This is the 40th in a series of short videos to explore topics I have seen in my practice. Dr. Daniel Cameron #LymeConversations
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I find that I never know how many spoons I’m going to have, so it doesn’t help me with self pacing, but it REALLY helps me after I crash from reaching beyond a healthy limit. I kind of think of it as having borrowed spoons from the days ahead. I know the only way to refill my spoons is too rest and lay low. I try to think of it as giving back to my body instead of paying the piper —- because I’m grateful for the experience I was able to have. The Original Spoon Theory by Christine is genius.

I almost think the spoonfuls are worse in a way. You’re so happy to be feeling that way, that it is crushing when it comes crashing down.

This resonates with me. I spent a day doing early Christmas shopping before the awful crowds. It took s few hours to fill my lists, and I paid for it. Two full days my energy was sapped. I never thought it was because of Morgellons until reading this. You really have your finger on the pulse of this horrible disease. I will be counting my spoons.

Never thought of "spoonfuls", but same thing, I think of it like a checking account, with limited fundss.

Yes yes yes! I have been down a week after 2 days of cooking and families for thanksgiving!

Yes - this is me

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2 weeks ago

Dr. Daniel Cameron

I have known patients who hear about high-tech approaches to Lyme disease to include intravenous antibiotics.

Some of these patients have delayed treatment over fear of a high-tech approach.

These patients were not aware of low-tech approaches such as oral antibiotics.

Oral medication like doxycycline, amoxicillin, azithromycin have been effective for many patients with tick-borne infections. The list also includes a combination of azithromycin and atovaquone for Babesia. These drugs are generic and often covered by prescriptions plans.

I leave the high tech approach for patients who fail to clear their illness with a low-tech approach.

Have you known anyone who has delayed treatment over fear of a high-tech treatment? Please join the conversation with others in the comments below.

This is the 38th in a series of short videos to explore topics I have seen in my practice. Dr. Daniel Cameron #LymeConversations
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My wife has had Lyme for about 12 years. At the time the doctor looked at the bulleye asked her symptoms, which were none at the time and said she would be fine. Four years ago doctors started treating for Addisons disease but this year decided that wasn't the problem. this summer they still had no idea what could be wrong even though I have been saying Lyme for years. They finally gave her 10 days of doxycycline which did nothing. After a bad bout with pneumonia she was on vancomycin for 10 days and seemed better. Today she is right back to passing out and sleeping all day. Doctors are 50/50 whether she had Lyme.

Some don’t want to delay but can’t afford..... I’d urge them to not get discouraged if they can’t do IV. Orals worked for me. I am allergic to so many of the best antibiotics for neurological Lyme, so we stayed the course with orals.... and it made a huge difference for me.

Yes! I spoke with someone who delayed her teenaged daughter’s treatment for multiple TBDs because she (the mother) was terrified of antibiotics. The poor kid was severely ill and missed 2 years of school before she finally got to an LLMD.

Yes, me.. I had hives from head to toe during my last treatment ..not sure if my body was overloaded from antibiotics or if I was allergic to meds after 3 days of being on them. Regardless, I have a fear of taking different antibiotics because I feel the best I have in a long time and I primarily fear getting worse again before I get better-which I can not because I need to work as head of household and IIhave already have had to stop working with no immediate help from disability for bills or heathcare for treatment. Off meds for over a year now and mainly no healthcare that would cover Lyme treatment . . My symptoms that remain are neuropathy left side, air hunger few others..--going for cataract surgery both eyes. not sure if my eyes are still an issue until after surgery..but eyes got bad very quick during high point of Lyme.. I'm told I am very young for having cataracts in both eyes. After cataract surgery I am going to pray for the courage to try the new dapsone treatment for per sister is where I am at with this unrelenting disease .

I have been on t he low tech approach since Sept 2016. Next two months doxy...praying all is resolved then.

What about Cistus Incanus, how do you see this herb helping Lyme disease patients? Dr. Daniel Cameron

In my experience, "low tech" alone does not work.


I have a friend who is taking the natural route. Will not be able to say more till she has gotten through this treatment. I went to LLMD after 30 days of doxy. And was treated for one and a half years of ABX. I an natural now, after nine plus years, I am still struggling ......

How much success do you have with patients who are chronic and use the Lee Cowden protocol?

Sadly my stomach cannot handle the oral antibiotics. I’m now trying herbal treatments, I’m 5 weeks in with no change. The next step is iv infusions with no insurance coverage.


I have 2 strains of lyme disease. I took Doxycycline for 28 days Initially with each strain. Now several years later I am still treating, but I am using natural herbs,supplements, and all of the Microbe Formula products. My symptoms are mostly neurological and nervous system issues... plus vision.

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2 weeks ago

Dr. Daniel Cameron

The conspicuous gap between doctors treating Lyme disease

There are doctors who have concluded that chronic manifestations of Lyme disease do not exist and any symptoms are nothing more than the aches and pains of daily living.1

There are doctors who have concluded that chronic manifestations of Lyme disease exist and can be severe.

NIH sponsored trials and a recent Johns Hopkins study documented the existence and severity of chronic manifestations of Lyme disease in some patients.2.

I had thought the NIH sponsored trials of chronic manifestations of Lyme disease would close the gap between doctors.3-5 They have not.

Has your seen a gap between physicians? Please join the conversation with others in the comments below.


. Wormser GP, Dattwyler RJ, Shapiro ED, et al. The clinical assessment, treatment, and prevention of lyme disease, human granulocytic anaplasmosis, and babesiosis: clinical practice guidelines by the Infectious Diseases Society of America. Clin Infect Dis. 2006;43(9):1089-1134.
2. Rebman AW, Bechtold KT, Yang T, et al. The Clinical, Symptom, and Quality-of-Life Characterization of a Well-Defined Group of Patients with Posttreatment Lyme Disease Syndrome. Front Med (Lausanne). 2017;4:224.
3. Krupp LB, Hyman LG, Grimson R, et al. Study and treatment of post Lyme disease (STOP-LD): a randomized double masked clinical trial. Neurology. 2003;60(12):1923-1930.
4. Klempner MS, Hu LT, Evans J, et al. Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease. N Engl J Med. 2001;345(2):85-92.
5. Fallon BA, Keilp JG, Corbera KM, et al. A randomized, placebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy. Neurology. 2008;70(13):992-1003.
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Julie Anne Well said.

Can you reference the articles so I can reference them to my primary who is interested in learning?

yes all doctors whether in infectious disease or not must be Lyme literate! So many people suffer from misdiagnosis as they are not treated with antibiotics but are given physical and behavioral activities for functional movement disorder for example....and the cardiologists brush it off almost completely as my daughter was told oh your POTS happens in half of teenage girls and is typical! NO POTS IS NOT OKAY AND SHOULD NOT BE IGNORED.. ALL DOCTORS NEED TO BE LYME CO INFECTION LITERATE

My PCP said my Lyme is treated and I should see a Rheumatologist for the pain. Other times he’s told me to talk to my Psychiatrist 🙄 I’m seeing a Naturopath who also has Lyme and gets what I’m going through. It’s sad that many doctors dismiss it.

I sure have! Just a few months ago I was screamed at over the phone by the nurse of an infectious disease doc with whom I was trying to get an appointment! “You don’t have Lyme,” she literally yelled. “You’ve never tested positive!” Result: no appt. so I went to a walk in clinic, where I had to beg a doc for only two weeks of doxycycline. She too said I didn’t have Lyme becuz I’d never tested positive. Yet I had been treated for 20 years by a Lyme specialist on the basis of many clinical symptoms. Which is what Lyme literate docs usually do these days. I am shocked by the low number of Lyme literate members of the medical community, especially since Lyme and other tick borne diseases have become an epidemic. Happily Lyme rarely bothers me now, but I panic every time I get a few symptoms and go to my naturopath, who can help. I maxed out on antibiotics years ago

Still can’t find an effective doctor.

OMG Yes!!!! It’s the size of the Grand Canyon! In fact my dr quoted the aches and pains line to me LONG before I ever saw it in the IDSA guidelines. It stuck in my mind bc it was so absurd. Then I saw it in print and knew it was familiar! It was just my first doctor being a lemming.

I have been sick for 8 years- dx include- fibromyalgia, chronic fatigue, anixety, migranes- chronic pain- shingles, pneumonia, bronchitis, emphysema, low immune system, mthfr mutation, tmj, unable to work. Have had countless organs removed- feel it’s all linked- Have been to every specialist - feel like I’m slowly dying- always feel better when I’m on antibiotics - tell drs- falling in deaf ears. Have been tested several times for Lyme and tested negative each time. Recently 3 weeks ago had emergency gallbladder removal surgery, pancreatitis, uti stayed in hospital a week cAme home followed up with my primary did more blood- now dx with mono n Lyme- finally maybe I can get treated n relief. Hoping it has been hiding all these years and I get my life back. On doxy for 1 month- hoping it helps - couch bound, feel horrible, pain migranes, - it’s sad that people are like me suffering day in and day out- and not treated. It’s antibiotics- no one is asking for illegal medication- Any advice- would love to be patient of yours. Called last week- hoping to get in January. All my drs call me a medical mystery. My immune system is so low and all our money goes to medical bills, tests, hospitals, prescriptions and co-payments. More doctors need to education on Lyme and better able to assist patients/ with all the symptoms n negative test. Feeling defeated 😕

PLDTS or chronic? That is the question.

Illinois just passed a statute protecting doctors so they can treat Lyme patients without risking their jobs. My Dr is willing to support my treatment after January 1 when it goes into effect, but she needs succinct resources since she still is only familiar with the basic inadequate information. Dr Dr. Daniel Cameron, or anyone else who might have good resources, can you recommend some articles that would help catch her up? I don't want to overwhelm her with too much, just whet her appetite for where to look up the right resources on her own.

Doctors won't prescribe good tests or any tests like CD57 because they say ins will red flag it. They are all afraid and some just are stupid and don't keep up with research as they should.

It is a treatment disaster, totally uneducated physicians.

Until they check your blood etc. duhhhh


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2 weeks ago

Dr. Daniel Cameron

Lyme disease can change lives.

“Participants often described experiencing profound physical, emotional, and social limitations during the course of their illness” writes Rebman and colleagues from Johns Hopkins based on interviews with 29 Lyme disease patients.1

The authors included one mans experience.

“I had season tickets to the [symphony], the Opera, and the [theater] and I used to go to all those, and when I was sick I couldn’t go at all, so I’d give tickets away. When I started feeling better, I started going again, but I would have to leave at intermission and go home because I was so exhausted. So I ended up not subscribing to those and just giving that up as well. It really has changed my life dramatically.”

Have you know someone with Lyme disease whose life have changed? Please join the conversation with others in the comments below.

This is the 37th in a series of short videos to explore topics I have seen in my practice. Dr. Daniel Cameron #LymeConversations

1. Rebman AW, Aucott JN, Weinstein ER, Bechtold KT, Smith KC, Leonard L. Living in Limbo: Contested Narratives of Patients With Chronic Symptoms Following Lyme Disease. Qual Health Res. 2017;27(4):534-546.
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This is all so True !!!! Drs , The CDC, testing stink !! Thank God for my LLMD that finally figured it out !! Sick for 2 years !! PICC line in now for 13 months !!! I was a athlete work out everyday ! farmed , mom of 5 worked sun up to sun down ! To covered in a rash horrible diarrhea , chest and heart palpitations so weak I could hardly move , crawled to the bathroom , noises would come out of my skin like sparklers!! Lymph Nodes ! Fluid around my heart , muscle weakness, seizures !!! Had no hope !!! Now I do !!!

My world will never b the same its up to me to b my own advocate and educate my doctors cause if I didn't THE DOCTORS WOULD HAVE KILLED ME PERIOD this is how much THE DOCTORS ARE UNDEREDUCATED NEVER GIVE UP KEEP FIGHTING EVEN WHEN IT KNOCKS U ON YOUR ASS GET BACK UP FOR U

I am ...or was a very strong gal I grew up on a dairy farm,worked through art school-glass blowing and ceramics. I had 5 children-whom I homeschooled. As a potter....I had resilience. Going out on my own -changed careers. I worked at a clinic -studied hard to be a therapeutic Therapist. I worked on Dallas Cowboys,Cheerleaders,gymnasts(olympic!) I worked for 17 years. I studied to be able to teach Therapy. Now? I struggle to think,have no strength? and! have spent weeks and weeks and weeks in hospital. Even lost my toes. I feel like an old woman with scars all over my body!

We have had to just leave our place in Arizona empty this year while I go to a Lyme Specialist. We had purchased tickets for the Rodeo and Symphony and air flight, but just look the losses. Now we are shoveling snow again in our 70s. We do not go out or have anyone over anymore because of the mess on our carpets, counters, walls, etc. In the middle of all this, our son died. I am not sure if I even care if I live anymore.

So I’m about 10 years in, experiencing all of these things. Wondering when or if the “course of my illness” will ever end.

Seriously...I’m disgusted that John Hopkins can’t do better than interviewing 29 patients! I can do that on my Lyme group in a few hours on Facebook. Seriously people there are tens of thousands upon tens of thousands of patients with Lyme disease who’s lives have been changed FOR YEARS AND YEARS OR FOREVER! Hopkins your a top Hospital in the country! Do you really care? Get it together and help us! We are dying here!

I can remember when my daughter was 3 wks old I could barely walk & 18 month later my son was born & I felt like I was hit by a Mac truck, kids suck the life out of you enough already as it is & then an unknown DX/fibromyalgia...11 yrs later got DX of Lyme...feel like I deserve better treatment & understanding from DRS, especially when I ask about the possibility of Lyme... I miss the days when I felt like I was 25 again

I was diagnosed with Lyme in 2013 and told I do not suffer from this disease anymore so I am suffering with age?

OMG yes I used to do so much more than I do now. I’m getting better than when first infected but definitely not the same as I once was. Feels like I will never be.

I went from hiking and traveling and working in casting (favorite job ever) plus marketing and strategic social media consulting - to being unable to work, unable to function, unable to read, unable to speak a clear sentence or find words, to so much pain and so little energy or strength I could barely walk up a few stairs to my kitchen. Completely disabling. And it took two years and all my savings to even get a proper diagnosis. Been in treatments for two years (whatever I can afford with no income) and am improving but still unable to work or function much. It is a totally disabling disease and I would wish it on no one. 💚💚💚

My son is only 20 years old. He went from high energy, independent, thriving young man to sleeping all day. If not asleep highly anxious, severe muscle and joint pain. He isolates himself from friends. He has no ambition to do anything. He’s become so depressed that he is not the same person. It’s terrible to watch my suffer!!

Yes & how do you convince DRs it's not a phase or in your head? I'm not saying anything about those who get disability, but one would surely think it be easier to get benefits for theses very things...I'm to the point I know I'm gonna physically suffer for the rest of my life & it's such a financial burden for me because I'm a single mom, getting by with only a small paycheck & I've been fighting's a damn shame!

Not sure my issue is Lyme,but after being treated I did feel some better. I am now almost back to where I was before treatment. Whatever is going on keeps me from living my life as I used to . I live in a box, its better than some, so I try not to fret over it too much. I miss my family, job and friends. I don't want to go to the Dr any more, there's no use. writing this makes me cry. I miss myself. over ten years.

Absolutely changed my life. Get chest pains and totally exhausted, just trying to concentrate and follow a serious conversation. Difficult to explain. More neurological symptoms for me.Completely understand having to leave at intermission when you would have enjoyed being there before being sick.

Just got formally diagnosed w/this crap,,ITS HURTS,,, that bacteria gets into those connective tissues,,bone,,joints,,,,nasty stuff,,thee only person I would wish it on would be our buddy kolodny,,m

It has definitely changed my life and way I live. Between the aches and pains and overwhelming fatigue, I don't do much of anything anymore.

What isn’t talked about is once someone is diagnosed the battle for coverage and long-term disability. What isn’t talked about is once someone is diagnosed the battle for coverage and long-term disability. I was forced back to work in 2016 and ended up with even more issues. I am soon returning to work again. Because Metlife has yet to approve LTD. They have had ample time. The poor testing and lack of treatment are old stories. What needs to be told is corruption on the TBWG and the battle employees face trying to get better. I gave myself IV’s at my desk. Have you ever seen a cancer patient give them selves chemo at work?

absolutely...I have been totally been devastated by this. Though I still have not been diagnosed. I have very strong concerns that I do have Lyme...I fit it to a T...darn! I have Morgellans...have been very very ill to the point of total exhaustion, the point of debilitation

I read these comments with a heavy heart. This describes my life as well. Too few people actually get it. You loose the life you may have had and relationships may be severed. It’s very difficult. May God grant you all strength, better health, and calmness in the midst of this storm.

Yes my own. Everything is different. I used to go and go and never add stop. Now I'm lucky if I have 2 or 3 days out of a week where I feel semi normal then back to extreme exhaustion and fatigue. This is not how life is supposed to be. 6 years now with Chronic Lyme Disease. 💚🙏

It has totally changed my life, its upside down now. Lots of losses.

It reduced my life in such a manner I think a woman of 80 could do better than me, I'm 45, sick and alone with 2 kids. Such a mess.

Have any of you tried LDI? It's really helped me. If you want more info, DM me

It's not just during treatment. It's before and after for lots of people.

3 years now and it has been a downward spiral with no help in sight. Drs think I am just crazy.

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3 weeks ago

Dr. Daniel Cameron

Lyme rage: “Is that really you?”

“One woman spoke of what she called “Lyme rage” and how it made her feel.” writes Rebman and colleagues based on interviews with 29 patients with chronic manifestations of Lyme disease.1

“The least little thing, like if one of the dogs knocked over a bowl of water, I’d just lose [it]. I’d be standing there, and it was almost like this out-of-body experience and I’d go, is that really you?” writes Rebman.

Lyme rage was first described in patients with neurologic manifestations of Lyme disease in 1990. “seven had extreme irritability. They became angry over circumstances that previously caused only minor annoyance.”2

Have you know someone with Lyme rage, extreme irritability, and anger? Please join the conversation with others in the comments below.

This is the 36th in a series of short videos to explore topics I have seen in my practice. Dr. Daniel Cameron #LymeConversations

1. Rebman AW, Aucott JN, Weinstein ER, Bechtold KT, Smith KC, Leonard L. Living in Limbo: Contested Narratives of Patients With Chronic Symptoms Following Lyme Disease. Qual Health Res. 2017;27(4):534-546.
2. Logigian EL, Kaplan RF, Steere AC. Chronic neurologic manifestations of Lyme disease. N Engl J Med. 1990;323(21):1438-1444.
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My son-in-law is usually even tempered and one would even say he’s chill. Two years ago he contracted Lyme in Georgia. Now he flips out at the drop of a hat. It’s definitely real!

My Lyme rage manifested while I was taking Flagyl. Once I stopped this antibiotic, I was back to normal.

I have such rage some days it’s frightening.... then I cry its been over 1 and 1/2 years and its bot gone away

Bartonella and Lyme rage it was evil just plain evil

Yes & there's time I still flip my lid...but now thru prayer, breathing exercises & knowing when I've had enough, I feel I can keep it under control. My ex didn't help with matters at times...he not once attended a DR appt or addressed his concerns, just name called & it depleted my self worth. #Betteroffonmyown

Oh ya. The rage is unreal.

What do people in Texas do? Where do they go since Texas says there is no such thing as Lyme Disease? Yes, we are quite backwards here, especially medically speaking

Bartonella or Lyme? Or both? I had this bad last summer.

It, being lyme and bartonella attacked my nervous system, at it's worst I hallucinated bugs all over and the slightest thing would overwhelm me. I couldn't get angry or do too much, still have to be careful, or I have an episode 10 yrs later. Anti seizure medication help,but and I'm not in extreme pain anymore, just fragile and I hate it. I still am get anxiety and never did, or rarely before I was sick. I've learned I have to walk away and keep my mouth shut to calm down before confronting people with difficult situations


I think you have that! Lol🤪

My 12 year old son rages. In fact, he had an episode today. How do you stop it while it's happening? He gets really strong...

Definitely real! 🥊

Julie Maynard

Darcy Groves

Allie Skibiak

I agree with this

I was desperate to redirect my brain. The behavior was so out of character it hurt me to hear myself. And made me not like me. I felt mean and bad. I started diffusing specific oils and meditating like crazy with a single oil. For rage. Then I took it with me everywhere I was and the security felt it coming on I stepped away and put on the oil. I did this practice hard for two years. It worked for me.

Dan Larocque

OMG! That has been me too always each Borrelia cycle every month I go through. I feel so relieved it’s not my fault. God bless this site.

Its very real

I had people say i need hormones because im 59 post hysterectomy!! I couldnt be extremely fatigued and miserable causing irratability!!

Yes and I absolutely can’t stand it! I know many coping strategies and have a masters degree in counseling. Some days those are not enough!

Absolutely true


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