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

3 days ago

Dr. Daniel Cameron

I am posting the eleventh in a series of short videos to explore topics I have seen in my practice.

Fallon and colleagues described a girl with Lyme disease.

Her functional limitations offer additional insight into her illness.
• Her parents and teachers described “trouble with consistency in day-today work; careless; head in the clouds; scattered and sloppy work; assignments are late, forgotten, or lost; difficult time following directions; more forgetful and disorganized.”

• “Her parents noted that Susan would go to school with homework in her bag but once there have no idea where it was or whether she had done it.”

• “Emotionally, she had become frustrated, overwhelmed, tearful, aggressive, and fearful with new onset phobias and nightmares.”

The girl was treated successfully with antibiotics starting at age 7 and again at age 12.

I have children with Lyme disease with similar presentations in my practice.

Have you known a child with functional limitations from Lyme disease? Please join the conversation with others in the comments below. #LymeConversations

1. Fallon BA, Kochevar JM, Gaito A, Nields JA. The underdiagnosis of neuropsychiatric Lyme disease in children and adults. Psychiatr Clin North Am. 1998;21(3):693-703, viii.
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I have seen convergence insufficiency in my patients.

There are excellent individuals who have been working with the schools but it is difficult.

The case does remind me of what I have seen in my practice.

My daughter was a active honor student. She fell at school, got concussion and whiplash and went down hill. One year later, diagnosed with chronic Lyme. After seeing many Dr's and saying she was ok. Headaches, depression, Lyme rage, body pains and the list goes on. Spends most of her days in bed. Messed with her body (all of it). I hate seeing kids go through this. And school in my area just don't get it. She is now home schooled with a 504 plan and her grades are still suffering. In process of getting her half days, which a brick and mortar school here would not go for. I just want my active daughter back!!

Sounds like me as a kid. At 64 I am getting treated with traditional Chinese medicine for GU syndrome the Chinese term for multi parasitic illness. I am recovering and improving. Prior to this treatment I did 3 years of antibiotics and the Lyme returned. The tcm treatment is 3 to 5 years. I am going into year 3 with much improvement. My mother had ticks removed from her hip as a child and had Lyme symptoms I also lived in the forest for 25 years, but I think I had it all my life plus many other wee beastie infections

My daughter is 10 and was diagnosed with Lyme disease two years ago. For awhile now, she has been struggling with what I recently started calling ADD symptoms...the forgetfulness, carelessness, lack of focus and motivation...things she never had issues with before. I very recently started questioning whether or not it could be related to the Lyme, so this is reassuring and also sad to see.

Some of it is convergence insufficiency often brought on by Lyme. After mine was treated extensively for Lyme she improved dramatically but still exhibited some adhd and cognitive issues. Vision therapy was a miracle. When she goes off abx for a while her Lyme flares and she needs touch up vision therapy again

Interesting, I too have terrible nightmares from Lyme. Still get flare ups after all these years. Antibiotics help control my symptoms, plenty of rest, vitamins and exercise. Ambien helps with sleeping and controlling nightmares. I hope she's doing better.

That sounds slightly familiar! Thanks to you, Dr. Cameron, we have one in college and the other in AP classes with excellent grades.

I was diagnosed with ADD as an adult. Adderall was prescibed and very necessary for me to be successful in the highly demanding technical work that I do. It also allowed me to mostly tolerate environments with high visual/auditory stimulus. Although diagnosed as an adult, I had many ADHD behavioral characteristics in adolescence. I was diagnosed and treated with short term abx for Lyme, Babesia, and Erlichia in 2014 with good results, but still required the Adderall. WB for Borrelia B. was positive for both IgM and IgG with that first diagnosis. I was reinfected with Lyme one year later and failed short term abx treatments. Referred out to a very knowledgable doctor specializing in tick borne illnesses, I progressed through a series of oral abx over the past 3 years, and experienced many new neurological symptoms which were evoked then subsided. I also have a brain stem lesion seen on MRI. About 2&1/2 years after starting continuous therapy I sensed that I no longer needed the Adderall and that it was potentially causing recent heart symptoms. I did a trial vacation away from the Adderall. It has been over 6 months that I have done fine at work without it (previously I would know by 1 pm if I had forgotten my midday dose). I can tolerate dinner now at a sports bar/restaurant with many games showing on a plethora of screens without fight or flight type of anxiety. I can complete coherant sentences without rushing through yet still forgerring what I was trying to articulate and I can follow and maintain conversations with others well. In a retrospective lookback at medical hx it seems obvious that I was first infected with Lyme Disease in adolescence 45+ years ago (in Connecticut where the woods and fields were my playground). I very much attribute that my ADD/ADHD symptoms were Lyme Disease related.

Yes! The last 5 years have been extremely challenging. Lyme literate professionals a lacking in Maine. Doctors

All 3 of my children 😪 Lyme and Bart

Anger and mood swings - which gets lumped into being a pre-teen.

My son who has PANS, Lyme and co infections

Thanks for sharing Dan!

Pandas/Pans needs funding and research.

Lyme--> PANDAs --> contains ADHD symptoms --I know!

How do we get the schools on board? Lyme/PANS is unheard of at my son's school in Maryland.

Me too, but at age 71, the clock is ticking.

This was me as a teen. It took till I was 29 to be diagnosed.

Dr. Cameron- Dr.spector shared a post about phage therapy. What are your thoughts in regards to Lyme treatment? www.statnews.com/2018/06/21/first-phage-therapy-center-in-us/

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4 days ago

Dr. Daniel Cameron

Lyme disease can be more than the aches and pains of daily living.

I am posting the tenth in a series of short videos to explore topics I have seen in my practice.

I have seen Lyme disease patients in my practice with severe fatigue, poor sleep, pain and cognitive impairment despite antibiotic treatment.

Dr. Gary Wormser and colleagues in their 2006 IDSA guidelines dismissed these patient’s symptoms:

“In many patients, posttreatment symptoms appear to be more related to the aches and pains of daily living rather than to either Lyme disease or a tickborne coinfection.”1

Yet, the National Institute of Health (NIH) trials reported that the quality-of-life for these patients are severe and worse than patients with heart attacks and diabetes.2

A recent Johns Hopkins trial reported severe symptoms on measures of cognitive complaints, pain, fatigue, and sleep.3

Do you know anyone whose symptoms have been dismissed? Please join the conversation with others in the comments below. #LymeConversations
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Probably most of us have been dismissed because the tests are not reliable. So you just keep trying to figure it out, while you slowly go broke, relationships fail, career paths fall to the wayside cause you can’t keep up with the demands. And then they think you are crazy. Well, you probably are at some level because you are sick and no one knows why. And thank you for caring.

I wish Dr. Cameron was closer to where I live. What an awesome Dr who practices the art, science, & compassion for humanity of a true healer?

My son was diagnosed with Lyme Meningitis in 2007, after treatment he seemed well for a few years and then all of a sudden his health went down hill. He has had stomach issues, severe fatigue, sensitivity to light and pain in the neck and joints as well as cognitive issues. We have been to multiple doctors and no one will look at the possibility that this could be from Lyme. He is seeing a neurologist who has performed a Lyme test but is has come back negative. He is being treated with anxiety meds and was told to see a counselor. This has been 5 years and no one is listening 😢 we tried to get in with infectious disease but because he tested negative they will not see him. This has been an over 5 yr battle and I feel as if I am getting no where. I am watching his health decline and doctors just passing him off to the next specialist. He is 22 and has his whole life in front of him but cannot enjoy it.

I tested positive about 9 years ago ..... got better then 3 years ago sick again much worse than first time.... tests negative now but still have fatigue, pain and some other symptoms. Does this mean no active infection but residual inflammation? I’ve had a lot of blood tests and everything normal!!

Dismissed with no help over 8 years, apart from the occasional strong painkiller. A list of symptoms(including those mentioned) gradually built up over the years. Paid privately for a test with a reputable laboratory last year. Positive IGG. My quality of life, work, everything has been affected. When producing the evidence and results my GP admitted he knew very little about Lyme disease, and in the next breath said it was so rare that he doubted I had Lyme..So now , after years of humiliation, I feel I cannot go back. It is treated with such disdain here in the UK. Like somebody made this disease up to inconvenience the medical profession.

Yes, and I am lost and don't know what to do anymore. It's been years of agonizing pain and no life.

In the past 10 years I have spent around $100,000.00 out of pocket to see LLMD’s and do alternative treatments, supplements, colonics, sauna, injections....

It is so true. I was diagnosed in 1996 with Lyme. Life is not the same since. Fatigue, pain, sleep disorder, Hashimoto...

Hi, Dr. Cameron! Thank you for continually having this conversation and believing your patients! And, since you asked I will offer a quick answer to your last question: yep, all of the above...God bless you and again, as always thank you! Love to everyone at your wonderful office!

Yes Me. I've been laughed at when I was describing my medical problems with a doctor. I am happy to be validated at least on here. I am not getting any help from the medical community. They tell me there's nothing they can do now Lyme can not be cured

I was originally diagnosed with Lyme and co-infections in 2009. Treated with antibiotics for many months, with no significant lasting improvement, but added many terrible GI issues to the mix. I no longer test CDC positive for Lyme (for what that’s worth), but all the symptoms remain. I do have a diagnosis for CFS and MCAD (with active EBV and HHV6) now though. These all have similar presentations. There’s no debate that many who had/have Lyme are sick long after infection - but for some people at least, after treatment, is the problem more the damage done from the Lyme infection rather than current spirochetes? This is how I am feeling these days.

I wonder if the problem with my knees that can be one or both is Lyme related. I used to be able to walk miles. Now, I am in severe pain after 1/16th of a mile. I use canes often. Stairs are difficult.

My symptoms as well as my young son's, were dismissed for twenty five years. Through our journey, I found more useful information and actual relief from the alternative medicine community. Thanks to our family chiropractor, we started treatment with a Lyme literate doctor (expert) five years ago. We will never be 'cured'. However, thanks to our Lyme Doc, we are on our feet and living a productive and joyful life. Do not give up!

This is so sad. We really need to figure this out. The amount of people with lyme is growing at leaps and bounds.

Yes. I was diagnosed with Lyme shortly after giving birth to my son. I started experiencing aches and pains and stiffness in my neck, ankles/ feet, hands etc. — I assumed this was related to a traumatic delivery and recovery. However, things rapidly worsened to the point that my limbs gave out from under me. I was tested for Lyme and tested positive. I started the traditional course of antibiotics ( and did so for a couple months ). I had to stop breast feeding in order to do this. I did not have any relief from months worth of antibiotics. My primary Dr. then prescribed me a steroid to see if that would help — other than giving me the ability to become super Mom & never sleep ... it did nothing. I was then referred to the infectious disease specialist in my region - who did nothing. He did not even provide me with basic information regarding the disease and what the next few months/ years would look like. He said I took antibiotics and should be fine. He then referred me to a rheumatologist — again — bloodwork upon bloodwork & a negative co-infection test but otherwise I was told to make time for myself to stay active every day. He started me on an nsaid that has very minimally helped with the stiffness and aches. I was told I could have flare ups for life — which could possibly include being immobilized?! And apparently to the Dr’s in this region of NYS ... that’s not a big deal. I’m frustrated & buried in copays. So all I can say is THANK YOU to the Doctors who are pushing for better tests, treatment and actually making time in their schedules to show empathy to those infected. 😭

I have the worst aches and pains ever since getting Lyme. I hurt everyday, all day long.

Yes cognitive impairment, too much -to little sleep and Myalgia pain along with neuropathy .

Yes completely

Yes, all of the above for both of my parents.

Wormser is the second most odious person I've ever met!

Hello to you, have you seen any articles linking high histamine and any tick diseases ? thank you, Billie Conger

I've tried calling, but anyone out there that has seen Dr Cameron who suffered with painful bladder syndrome?

Great Info - Thank You 🙏

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7 days ago

Dr. Daniel Cameron

I am posting the ninth in a series of short videos to explore topics I have seen in my practice.

Babesia, Babesia, Babesia. We are hearing much more about the tick borne disease Babesia.

“Epidemiologic studies have documented that up to 40% of patients with Lyme disease experience concurrent babesiosis and up to 13% experience concurrent HGA [Anaplasmosis].”

writes Maria A. Diuk-Wasser from Columbia University, New York, in the journal Trends in Parasitology.1

A concurrent infection with Babesia and Lyme disease can increase the severity and duration of illness. 2

I find a concurrent infections with Babesia and Lyme disease common in my practice.

Babesia treatment requires different treatment. A combination of atovaquone with azithromycin has been effective for treating Babesia.

Have you known someone who has been diagnosed with a concurrent infection with Babesia? Please join the conversation with others in the comments below. #LymeConversations
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Plaquenil and Azithromycin is what my LLMD has me on. In 5 months I am 90% better!

Lingering symptoms of shortness of breath after malaria meds tteatment (which helped most other symptoms) for Babesia - Any suggestions on treatment for persistent shortness of breath?

My son and I both have Lyme, bartonella and babesia infections. In addition to Malarone (and previously, plaquenil), we are treating with sida actua tincture.

Never had a positive test but awful air hunger amongst other symptoms. Doxy combined with Malarone for three months, never seem to experience it again but my body didn’t like the combination, made it worse basically the whole time on it. Took a year for my body to get back to normal but it must have worked. I still get other symptoms but they don’t last that long. Antibiotic free for almost 3 yrs, but still not right.

Babesia, Lyme, and Bartonella - very debilitating - finally gaining energy and now less pain, neuropathy after two years treatment with doxy, zithro, malarone, plaquenil, nystatin, diflucan. Optometrist watching for potential eye problems. Extreme anxiety and insomnia have been big challenges. Recent Rx of Paxil helping significantly for anxiety. I also have PTSD so that could make the situation different.

Lyme, Bartonella and Babesia.. a trifecta that sucks!

one of my farm clients was diagnosed with this.

Yes my son and I both have Lyme babesia and bartonella. We’ve been on and off meds for 5 years. When we go off the symptoms return for my son within 5 months. For me I just live at a low level and take the meds when the symptoms become disabling. We have been on everything imaginable and they work while on meds. It’s no meds that present the problems.

Person I see is trying to get my immune system up. I have numerous co-infections. Bacterial and viral. Using herbs and supplements because of horrendous leaky gut. I am dealing with almost every symptom regarding Babesia.

I’m now dealing with my first Babesia relapse in over 2 1/2 years. Looks like 3 months of Malarone is knocking it back down.

Was treated for it but I think I’ve relapsed. Do regular doctors rest for this?

Lyme, Babesia and hypercoagulation over here..brutal

Jennifer Lumsden- this is our specialist in NY

Alina helped mine a lot

Me

Margaret Byrne

Suzanne Reggio Belles

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1 week ago

Dr. Daniel Cameron

I am posting the eight in a series of short videos to explore topics I have seen in my practice.

A spinal tap is often normal in my patients with chronic neurologic manifestations of Lyme disease.

I first read about this problem in 1990 in the New England Journal of Medicine. Only two out of 27 patients with chronic neurologic manifestations of Lyme disease had an abnormal spinal tap. 1

I have often not been able to rely on a spinal tap. I have had to rely on other clinical information and clinical judgment.

Have you known someone with Lyme disease with a normal spinal tap? Please join the conversation with others in the comments below. #LymeConversations
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Ann You should keep on working on a solution. Your symptoms are commonly seen in tick borne illnesses. They are also seen in other illnesses. I refer to various specialists to make sure I do not miss another illness.

I would not jump to the "PTLDS" based on an abnormal spinal tap. 25 out of 27 patients with chronic neurologic manifestation of Lyme disease in 1990 would have been denied antibiotic treatment it the authors had used a negative spinal tap as a criteria.

Robin Sorry to hear your are having problems. Doctors are divided on their approach to tick borne illnesses.

I had a negative spinal tap and cdc lyme blood tests (although 3 in panel were lyme specific, have to have 10 for a positive) but I had a huge rash, and exact presentation for lyme, of the flu then the terrible joint pain that lead to nerve pain, unbearable pain, cd57 of 20, but because I didn't have 10 antibodies come up on blood test, because my immune system was so weak, no doctor would diagnose me for 2+yrs. Living hell!!! Finally, LLMD that took insurance diagnosed based on clinical presentation. So many like me, why is the medical community so slow? Do no harm, that's all most have done because they don't educate themselves and want to blame the patient. People don't turn crazy overnight for no reason. Why can't they find an accurate test to diagnose lyme? I've been sick 12years and practically nothing has changed. God bless everyone suffering with this disease and the good doctors are really trying to help, not hurt already suffering people.

I had the lumbar puncture and got immediate relief from the head and eye pain. The 12 hours after were tough but I would do it again. Weeks of twice daily oral and IV antibiotics helped symptoms except the fatigue.

It is the distruction of red blood cells and the reproductive cycle of the diseasemorganisms that cause the neurological symptoms . I have had lyme 2 times . Relieve from high dosesmof b12 magnesium iodine andzinc alleviated neurological symptoms . Did not do much for my vision though ....macular telangentasia.

Yes, me... And at the Mayo Clinic. It was my last hope. I was treated as a patient who is depressed and panic disorder... Here I am 10 years later still no answers and no doctor will even treat me where I live-- just manage symptoms even though a Lyme's specialist said I have Lyme's with two co-infection and candida glabrata... This illness has cost me years of my life, relationships and my livelihood...At this point I don't have much hope to ever feel well again.

I had Lyme disease in the early 90’s, had doxy for two weeks and had odd symptoms ever since. I currently suffer from foot drop with clonus . Recent lumbar puncture was negative. Now, I’m in diagnosis limbo .😞

I had 2 Normal Spinal taps after getting severe Facial Paralysis. First in 97 and second in 2000. Diagnosed with Lyme disease and Mycoplasma Fermentans in Switzerland in 2003..

They gave me one in June. When I was presenting with serious neurological symptoms. They said it was good/Normal. And after they did a new Lyme test (because before I wasn’t cdc positive). Well. Now I am cdc positive on 7 different markers.

I had 2 normal spinal taps (1990,2001) due to an undiagnosed leukoencephalopathy. I tested positive for Lyme and Babesia in 2016.

My spinal tap was negative for Lyme. I have many neurological symptoms and now peripheral neuropathy. Recently an intracranial aneurysm was found along with cervical carotid stenosis as my health continues to decline. I had MRAs and CTs in the past that did not show either of these conditions and I was a very active person in good health before I tested positive for Lyme, Ehrlichiosis, Anaplasmosis and RMSF in February of this year. Doctors here in Ohio are very close minded. My fiancé was also bitten by a deer tick the same time and suffers very similar symptoms as I do except Lyme seems to have targeted my nerves and brain.

I had a spinal tap done in 2007 after being in and out of the hospital for a month with "migraines". My husband asked the ER Dr if he could do the spinal and they did it right there in the ER. Not sure how much time had passed as my husband wasn't in the room with me when the Dr returned to tell my I had lyme meningitis. Life changing after that 🙁

Yes I had a spinal tap done and it was normal. But they did a Western blot test with a blood sample came out 6 bars out of 10 is positive. They thought I had a stroke admitted me make a long story short 4 days later I have Chronic Lyme and Lyme arthritis.

wow....and this was considered the gold standard for lyme. This is what the ID docs did....never would look at the symptoms, of course. Just the negative Elisa and the spinal tap. Damn them. This was around 2000.

Yes, myself. I presented with Bells Palsy and had a positive western blot showing double infection. My spinal tap was normal. That was in July 1992.

that's how they actually found my lyme oddly enough when the other tests were negative, as most tests aren't reliable it doesn't surprise me though!

Not only was my friend Rebecca Levine told that her spinal tap was "normal" by Stony Brook University Hospital; but the samples of her own fluid requested beforehand to send out for special studies were somehow "misplaced" by the hospital doctors and staff. Due to this mishandling of specimens, she missed out on having Dr. Alan MacDonald examine her fluid using his FISH (fluorescence in situ hybridization) method using molecular beacon probes before he retired two years ago.

Had myelin basic proteins in my tap Dr Coyle of Stonybrook university hospital told me wasn’t significant she said it was prob a lab error?

Spinal taps can lead to cerebral spinal fluid leaks. And people thinking they have Lyme disease symptoms are really having a spinal injury complication from a spinal tap. This is a barbaric method and I would never get it done.Ever. There is a doctor in Stamford University that does patches on spinal cords for these injured people. He uses their own blood to clot the area so patients heal and recover.

Never had a spinal tap, but my neurological issues are great. I cannot hear many people talk due to the loud tinnitis I have all the time 24/7. I have eyes that are foggy 24/7 and now cannot read street signs ... even large ones .. till I'm so very close. My head feels inflamed like my brain is larger than my skull. I need to do something about these symptoms, it is so totally affecting the quality of my life, doesn't feel like I have much to live for right now. How would you address this head issue I have?

Yes, normal spinaltab results, no Lyme (Borrelia), no Herpes simplex, no Herpes zoster, I was tested for those 3 infections. The wierd thing was I had viseble herpes simplex and herpes zoster outbreack too, but nothing to see in the spinaltab test. Terible painfull test by the way 😞

I had 2 negative spinal taps after being undiagnosed with neurological Lyme for over 10+ years.

My pressure was elevated and my blood tests were cdc positive

My daughter has had 6 all negative.

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2 weeks ago

Dr. Daniel Cameron

I am posting the seventh in a series of short videos to explore topics I have seen in my practice.

I have seen Lyme disease patients in my practice who have lived with a poor outcome for months to years.

I first read about 27 Lyme disease patients who lived with a poor outcome for up to 14 yeas in a 1990 article in the New England Journal of Medicine.

The majority of their 27 patients with neurologic manifestations of Lyme disease improved with retreatment.

I have seen these patients in my practice who have improved with retreatment.

Have you know anyone with a poor outcome after treatment for Lyme disease? Please join the conversation with others in the comments below. #LymeConversations
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I’ve failed heavy antibiotic treatment, homeopathic treatments, and I was the first patient with Lyme disease to try Low does immunotherapy (LDA/LDI). I ended Up being a guinea pig for an un empathetic Doctor who was only concerned with promoting and selling his new treatment. He left without warning when the state came down on him and threatened his medical license, and he just took off to Hawaii with no notice. I was abandoned by my family while bedridden and going through this treatment, my ex-wife literally walking out with my two kids because she said she “wasn’t having any fun.“ I now live isolated, in a dry cabin, an hour south of Fairbanks, Alaska. Life is extremely difficult, basically unmanageable, and I do not have the means or resources to move, and nowhere to go. I got sent to a pain specialist the last time I decided to seek medical help. He told me to prepare for the end of my life and start thinking about how I wanted to be remembered. I haven’t been back to a doctor since, and Ijust do my best to take care of myself in any way I can. I’ve had this damn disease for 36 years, 29 of those misdiagnosed. I even had the bull’s-eye rash as a kid, but nobody in Southern Oregon knew whatLyme disease was in 1984, and I was miss diagnosed with ringworm instead. Life has been a horrible struggle ever since, and I honestly don’t know how I’m even still here.

My daughter just got out of a wheelchair after uncontrollable seizures. Yay. Now she has not slept in a very very long time (with pharmaceutical intervention and natural intervention) she is now having schizophrenic experiences. Auditory and visual hallucinations. She knows they are not real, she has gone to the ER numerous times and they send her home because she is not suicidal or homicidal.

My worst symptom is severe burning pain all over. Nothing helps. Oh, this goes back to 2008, 2009. I woke up in the morning to get ready for work, but, I rather woke up screaming in horrific pain and I couldn't walk. I was bedridden from then on for the next two years. We need help out here. I don't know what it's going to take anymore. The burning pain makes me want to give up but I can't. It's a daily struggle.

Me. I failed all treatments.

It's too bad that people like Janie Collins use a site like this and other support groups to try to make money from desperately ill people. She is messaging everyone and pitching her oil and I-don't-know-what-else to them. If you go to her facebook page, you'll see that she makes money on facebook. I have blocked her.

Some people might say that my son and I have had a poor outcome. We are both disabled, unable to work, go to school or do other normal things like ride a bike, attend social groups or go out to eat. I find it hard to do normal household chores, cook meals, do the shopping and other things of that nature. We both are experiencing a relapse or worsening of symptoms at the moment. But we are still alive and not nearly as sick and suffering as we were two years ago. We're much, much better than we were even one year ago. I am thankful to God and our LLMD for that. We continue to treat the infections and I think we are continuing to improve, even though it's slow and incremental.

My question is my one and only symptom for 20 years has been chronic lightheadedness. Is this a symptom?

Nothing has helped much. CBD oil was for a while. But not anymore... single mom of 4 and no help about to lose everything. Last 3 days in a bed hurting deep in the bones even.

Nothing has helped me. Lyme+ numerous coinfections and reactivated viruses. 10 different antibiotics in various combos with high dose Buhner protocol herbs, numerous supportive supplements tailored to gut biome, genetic, and blood chemistry results. 8 years. Still sick. Constant pain for decades, that is now denied effective treatment thanks to opioid hysteria. Cognitive impairments, insomnia, neurological symptoms, and body-wide musculoskeletal issues. Extreme fatigue. GI distress and daily headache added this year when treatment ended due to financial ruin. Still unable to work or get disability. My Lyme went misdiagnosed approx 32 years. Long enough to pass to my kids. 3 have been treated. 2 of those are functional but not well. The oldest is very physically and mentally ill after a diagnosis at age 37, and 6 mos of treatment. One 35 yo physically and mentally disabled, but never tested.

Sadly I am one.

Dr. Daniel Cameron... have you done any research on the effects of CBD Hemp Oils (no THC) and Lyme and tick borne diseases? I was treated by you several years ago and I thank you again as you saved my life! I have experienced, as expected, some minor recurring symptoms and one that has never gone away is extreme motion sickness. I have recently, since January been taking CBD Hemp Oil with no THC and found some relief. Additionally, I have found my thinking and focus clearer. I am now a representative for pure Hemp Oil (no THC) products and one of the most frequently questions I get is “can it help Lyme patients and symptoms”. For me it definitely has assisted in managing the associated symptoms. As you know CBD Hemp Oils (no THC) is approved for use in all 50 states and has helped people manage many health issues. I am in search of and cannot find any real info on substantial research studies being done on CBD Hemp (no THC) and Lyme/tick borne diseases. Do you have any access to articles or research done in this area? Please know I do understand that so much of Lyme treatment is based on symptom relief that anything that may tend to mask symptoms is not a good therapy but I do understand that there is a point that CBD Hemp Oil may be incredibly helpful and may be miraculous in conjunction with medical therapies. Any input would be greatly appreciated. Thank you. Here is my website in case you would like to review the purity and oils I currently am working with. My Website: janecollins.MyCTFOCBD.com

My wife has had infection for over 17 years, after a year of abx her digestive system is trashed, and all her symptoms are coming back.

Dr. Daniel Cameron, what do you consider "retreatments" - in particular, I am asking about use of pills vs. IV, herbal and length of time. One this is defined, it would be easier to answer. However, I was treated on various IV for 7 years. CNS Lyme does damage that never really heals. You can stop progression, but I don't believe you can repair the damage to your brain or spinal column. I had seizures which made me "stick" to walls, meaning I was unable to move. Someone had to guide me to bed where I slept for 12-18 hours. I wore sunglasses inside and out, even in dark rooms. Antibiotics, Antivirals, various concoctions of alchemy and 4 back surgeries led to a remission of sorts after 20 years. Then it started anew with profuse sweating which has been going on for a year, nonstop, because of new bites, thanks to our family dog. Lucky me.

I did 8 months of oral antibiotics and after stopping them symptoms came back after 2 months. I’m currently on month 6 of IV antibiotics and oral anti parasites. One of my iv antibiotics was not available last week and within three days my symptoms came back. I am functional and can work but my cognitive decline is obvious to me as I can’t remember things, words...

3 years battling 3 TBDs pulsing various antibiotics, Flagyl, Mepron along with herbs. Got about 90% better. But have relapses and bouts of bad recurring symptoms. Thinking about self medicating and going back on Tetracycline or Doxy. Soo frustrating

What is the answer/treatment?!

Their is no answer it seems , u either pray u get well or u stay sick sadly ! I thank God everyday that with all my cos and Lyme that I’m doin fairly good ! I don’t know how but I am and it’s a blessing for me! I just pray that everyone with Lyme heals and feels better too!!!

The people I know that have had poor outcomes seems to be related to not having long enough treatment or have underlying issues that have not been diagnosed and treated such as mold, virus, parasites, Co infections etc

30 years undiagnosed after being bitten and displaying classic symptoms in epidemic states and returning back to New Zealand where they are not trained to diagnose or treat. I've had 30 years of hell with my health but at least I know why lyme and coinfections but will never receive any treatment so I get through treating the pain, and assisting others through their journey and raising awareness

Help.

No chronic lyme treatment on nhs in the UK suffered since 2014 there are many more others

We are lucky that we saw you just in time. We had a good outcome so far.... we are a year in... and its looking up most days. Thank you for your amazing help and for fitting us in.

Bit in 2002. Diagnosed in 2008. Treated for Lyme,Babesiosis, 5 viruses for 10 years. Still not back to being me.

Help us please Dr. Cameron!! How do we get more research done?!

Linda K Amtsfield not sure if this came up on your Facebook page❤️

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2 weeks ago

Dr. Daniel Cameron

I am posting the sixth in series of short videos to explore topics I have seen in my practice.

Fallon and colleagues described a 16-year-old adolescent with a broad range of symptoms and steep decline in function Fallon 1998 in Psychiatric Clinics of North America.

• He quit sports.
• His grades declined from A and A- in seventh grade to nearly failing by tenth grade.
• He appeared lazy because he found it hard to get out of bed in the morning.
• He often forgot to hand in assignments that he had in fact completed.
• He reported trouble staying awake in class and trouble concentrating.

His illness was initially thought to be the consequence of a breakup with a girlfriend, laziness, or mild depression. His illness resolved with antibiotics.

I have adolescents in my practice with Lyme disease who have problems in school.

Have you known a child with Lyme disease having problems in school? Please join the conversation with others in the comments below.

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I encourage both parents to be in the exam room with the child to address these educational issues. Thanks everyone for sharing your experience.

Sounds very similar to my son's experience. He went from performing at a high level in a gifted and talented program in elementary school to barely passing in middle school. He couldn't concentrate, stay awake, or comprehend well. He became defiant, irritable, and prone to anger. He also complained of back and joint pain and sensitivity to light and began suffering from depression. We didn't put all of these symptoms together until after I became nearly bedridden with Lyme 4 summers ago. With my diagnosis, I was able to recognize his symptoms as Lyme and requested testing. He too was positive. We both picked it up on the family farm. He was always covered in bug bites--his chore was to walk his dog through waist high grass to let the sheep out each morning--I didn't know to protect him. Thankfully we are both doing well after treatment with an LLNP. As a matter of fact, my son will be graduating high school in 2 months and heading to college next semester. Four or five years ago, we would have never thought that would have been possible.

Oh yes. My son has been diagnosed with ADHD and a learning disability in math. Now 20 he struggles with logic, but as he has been ill perhaps at birth - he does not know a "normal". This makes every single aspect of our lives very difficult, as much of his behavior could be thought of as on the spectrum - he will not give up on any argument, no matter that he is upsetting people. He has rages, and his early years he had awful night terrors every night. One of the most prominent aspects throughout his life is something I'd love to hear feedback about: Boredom. He has never been able to entertain himself, cannot maintain interest in anything he does. Now he is almost bedridden with CFS. He is very gifted and kind, but not likable. We think it is bart prominent, but of course he may have many co-infections as we were bitten almost weekly in upstate NY. Thanks Dr. C for all you do. We are going to see Dr. M., but know it will be a looong haul as he has been sick for so many years.

Dan, thank you for writing this for Neuro cognitive patients like myself and using bullets like I do. It helps us read and comprehend so much better. Hugs my friend, Betty, Iowa

We need to speak more of the biophysical possibilities associated with mental conditions...thank you

Been fighting with the school system for over 7 years. Only now are they starting to realize I was right not crazy. They labeled my child stupid for years after she got Lyme in 2nd grade. They put her in classes well beneath her because between flares she was a different person. I ended up having to leave my job trying to teach the school system the reality of Lyme. I was attacked repeatedly as crazy and even had to homeschool for a year and a half due to her anxiety and their attacks on me. Still fighting them for second chance learning they claim they support. If anyone needs it it’s a child with lyme

I have no children sigh!!! But I have such similar symptoms with my Lyme disease

Oh my word....sounds like my child. 😢 I feel so bad for these kids.

Sounds like the Bob Wolfe story. It started in the early 70s.

Sounds like my daughter Alyssa.

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2 weeks ago

Dr. Daniel Cameron

I am posting the fifth in series of short videos to explore topics I have seen in my practice.

I have seen anger, rage and extreme irritability in some of my Lyme disease patients. I first read about this problem in 1990 in a New England Journal of Medicine study of 27 patients with chronic neurologic manifestations of Lyme disease.

“seven had extreme irritability. They became angry over circumstances that previously caused only minor annoyance.”1

The authors did not state whether the extreme irritability and anger cleared with antibiotic treatment.

Antibiotic treatment has been helpful for these patients.

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

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One of my first signs; to include my personality leaving me., sad day. It has gotten better through treatment but I still miss who I was before Lyme.

Lyme rage, yes. I have experienced all of those symptoms. Sometimes the rage is triggered (by an event) and the depression or crying spells seem to come in waves, like in cycles. Cycles. Viscious cycles. I have to hang on and realize that it's 'just the lyme talking.'

I had to take antibiotics for strep throat recently. It was a strong one since it was my second time with strep in a month. I became extremely irritable and even had rage while on it.

Lyme Rage is caused by a co-infection

Lyme rage is real....you know that you are out if control. But you can't stop. Or the crying spells???

used to be able to shrug lifes "crap" like water on a duck, Not anymore. No patience for nothing.....

Yes, I went through so many emotions that I'd never had before and it's one thing to read it as symptoms and another to see and feel it, my family thought I going crazy. Such a horrible scary time. Lyme is an epidemic yet so few doctors are educated in it.

There is no question irritability and anger manifested with Lyme disease, though depression is the more problematic issue.

I get frustrated because I can't do what I use to because my hands don't work and then I feel rushed and then I explode. It's horrible!! I even told my doctor who doesn't really care how sick I am. She through me on paxil. Ugh!

I always know when the lyme in my body has resurfaced because it brings out the mr Hyde in me, with symptoms of extreme irritability, worse when fatigued, irrational anxiety. And definitely clears up when treated with antimicrobials.

This symptom is ruining our lives 😔. A really interesting very short book has me thinking - maybe Dr Cameron you’d have some comments? Seems like a way Lyme could be causing such symptoms and I’m hoping you could weigh in on the treatment? books.google.com/books/about/Hope_for_the_Violently_Aggressive_Child.html?id=2X5eDQAAQBAJ

Absolutely experienced Lyme rage. It was completely out of my control, although it really came out when I was alone. I am pretty sure it was from Bartonella more than Lyme though. And I know of a handful of others that had it too. It has completely gone away with intensive long term treatment.

I felt agitated, irritable, and obsessive at times. My anxiety seemed to be linked to my Bartonella symptoms. They all got better, but some antibiotics helped these symptoms more than others.

Yes me Dr Cameron Every time I have a flare up sigh!!

I don't need to be in a study to validate that brain irritability causes huge interpersonal problems in Lyme infections. And YES, these symptoms do resolve with treatment!

I have a relative who I wish would get tested. She has several symptoms that could qualify. Unfortunately, she refuses to even consider it. I just pray it does not destroy her marriage.

Yes, I have definitely experienced this.

Almost a decade later and rage is gone, but now I'm numb and fatigued most of the time, makes it difficult to lead a full life. I can't work fulltime, but was turn down for disability insurance, I don't know what to do.

Yes, both myself and my son. We both have seen the anger and irritability disappear after treatment. One of the first symptoms that I'm having a flare-up or relapse is the irritability and short temper.

Maybe they're angry because they realize that only the wealthy get correct treatment for this. If we were all George Bush we wouldn't even be sick right now. Magic Johnson tells the same story.

All three of us in my family to varying degrees.

Yes, in myself and a friend.

Yes. I think it got worse with treatment

Yeshelp please

Katharine Allentuck Max Bambery Alan Clark Max should I make an appointment with this member of my care team since max said you were happy to meet with them ? Thanks for being willing to unlike mom

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3 weeks ago

Dr. Daniel Cameron

I am posting the fourth in series of short videos to explore topics I have seen in my practice.

I have seen children who have suffered from both a concussion and Lyme disease.

Drs. Sharp and Jenkins described the symptoms of a concussion as headaches, dizziness, sleep disturbance, cognitive impairment, fatigue, irritability, anxiety and depression in the Journal Practical Neurology.1

These same symptoms can be seen in Lyme disease.

I had a case of a child who was unable to return to school or Field Hockey for months despite treatment by a skilled concussion specialist. The child was able to return to school following treatment for Lyme disease. She elected not to continue participating in Field Hockey.

Have you know a child who has suffered from both a concussion and Lyme disease? Please join the conversation with others in the comments below. #LymeConversations
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I don't underestimate the impact of concussions. Both conditions are important.

Same here... I was hit on the head and went back on treatment because my Lyme symptoms flared. Same thing happened to my daughter. Going on her third concussion. This last concussion caused a bizarre onset of anxiety and fear of dying. She went back on treatment for Lyme and Bartonella and the fear of dying went away and anxiety is now at a controllable low. Hopefully, that will disappear.

Six years and I am finally healing from severe Traumatic Brain Injuries "because" I just went through intensive Lyme disease and co-infections treatments. I am forever fragile though. Just a simple fall or jolt, without hitting my head, and the TBI symptoms temporarily return full force. Autistic type symptoms come and go depending on my environment and nutrition. So very interesting!

Wow! I’ve a a few concussions riding horses. I was only diagnosed w Lyme, babesia and bartonella 4 yrs ago. This makes sense as I feel I’ve had Lyme for years. Hmmm.

I grew up in the woods and on horses. I had countless concussions and by the time I was a teen I exhibited all of these symptoms but no one connected them to either. Explains so much looking back. I struggle now with brain fog, loss of words too often, joint pain that prevents me from doing much of what I love, fatigue, irritability ...

I've had 6 concussions and I first got Lyme in 1992...so it's a long road. And they feel similar in the head in many ways. I've had serious cognitive issues and when they were better, I remember feeling impaired and how impaired I really was, even if I wasn't fully aware of the impairment. It is like a veil, a fog, a wall that you can't get past. So look for ways to clear the roadblock in the brain and brain fog lifts.

I believe the two are connected with gateway being pinpoint brain bleeds...concussions create openings in blood brain barrier where spirochetes gain entry more easily than fully neuroprotected uninjured brain...

I have suffered from both...with both antibiotic Treatment AND brain rehabilitation--it affords the best outcome.

This was me! Hit on the head and symptoms were out of this world...

Seizures too.. ☹️

F

breaking this up for neuro cognitive patients to be able to read/comprehend. bettyg • • Dr. Daniel Cameron 31 mins • , 10.2.18 I am posting the fourth in series of short videos to explore topics I have seen in my practice. I have seen children who have suffered from both a concussion and Lyme disease. Drs. Sharp and Jenkins described the symptoms of a concussion as headaches, dizziness, sleep disturbance, cognitive impairment, fatigue, irritability, anxiety and depression in the Journal Practical Neurology.1 These same symptoms can be seen in Lyme disease. I had a case of a child who was unable to return to school or Field Hockey for months despite treatment by a skilled concussion specialist. • The child was able to return to school following treatment for Lyme disease. • She elected not to continue participating in Field Hockey. Have you know a child who has suffered from both a concussion and Lyme disease? Please join the conversation with others in the comments below. #LymeConversations

Tamara Shaw

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3 weeks ago

Dr. Daniel Cameron

I am posting the third of a series of short videos to explore topics I have seen in my practice.

Doctors have disagreed on whether to diagnose and treat Lyme disease without a positive test. They have also disagreed on how to treat Lyme disease.

I diagnose and treat Lyme disease patients using clinical judgment if the tests are negative. I treat my Lyme disease patients longer than 3 weeks if I suspect that their Lyme disease has not resolved. I follow my patients closely to rule out other illnesses.

I also inform my patients that there are doctors who disagree.

Have you known doctors to disagree on the diagnosis and treatment of Lyme disease? Please join the conversation with others in the comments below. #lymeconversations
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It is frustrating to find a doctor who is experienced doctor who can help in the USA as well as Canada.

I have also known respected doctors who will not budge on accepting the concept of chronic manifestations of Lyme disease despite nearly 3 decades of supportive research. Doctors should at least be able to accept we have a problem.

My testing was negative and not one doctor would take in consideration my tick bite history nor would they use clinical symptoms to diagnose or treat me. Its criminal... My first rheumatologist that I saw back in tbe early 90s...told me I had lyme antibodies but that I needed to see my gynecologist and get syphilis ruled out and than he would treat me. So I did as he asked. Saw my gynecologist...was tested for syphilis and the testing was negative. So than I went back to the rheumy and showed him my test results. Guess what? He said I didn't have Lyme...but that I had Fibromyalgia. He refused to treat or diagnose me with Lyme. Life would never be the same again. I was very symptomatic and did repeated CDC 2 Tier Elisa lyme tests..and they were always negative. 30 some specialists and no one could figure out what was wrong with me. Even when I would mention my tick bite history...they refused to clinically treat me...let alone diagnose me. #prosecutethecdc #lymecryme #FraudLymeTests #dearborn #lymecryme #lymerix #Fibromylagia #cfs #lyme #ActUpForLyme #postsepsis #Pam3cys #ospa #triacylatedlipoprotein #truthcures #chroniclyme #Allensteere #psueudolymphoma #LYMEAIDS #BCELLAIDS

Went to 52 referred doctors even though I was diagnosed within a day because of severe CNS issues and a bullseye rash, while in school in NJ. But, I don't think a service is done when you say other doctors disagree! You might as well say Dr. Steere and Donald Trump disagree.

I have lost count of how many doctors have lectured me and refused to continue the intake interview after I've mentioned I was diagnosed with Lyme in 2013. I've had doctors run a few cursory lab tests, which are always normal, and then dismiss me as an attention seeker. I've had doctors tell me there's no Lyme in BC, even though every vet in this town treats dogs, cats, and horses with Lyme. I had a doctor tell me I couldn't have gotten Lyme in Texas because theres are no deer in Texas and therefore no deer ticks. (I told him that there are an awful lot of confused hunters in Texas, in that case). Currently I have had to quit a job I love, which has put a huge financial strain on my family. I can no longer afford to pay for my natural treatments, and no doctor will prescribe anything to help with pain, inflammation, or fatigue, so I just have to live with it. I spend most of my days in bed avoiding light, sound, and people. If I could even get a diagnosis of MS or lupus I could apply for disability, but so far I have no diagnosis other than Lyme and coinfections (bartonella, babesia, mycoplasma pneumoniae, Epstein Barr Virus, candida) so in the eyes of most doctors I'm a nutjob looking for attention.

While not a Lyme expert, my amazing and knowledgeable family doctor of many years closed his practice and I have been searching for a new doctor. The last one I went to flat out looked at me and said she absolutely did not believe in Lyme disease as a valid disease and if I was seeking treatment for that with her, I had the wrong doctor!

It took 13 years to find ONE doctor who would diagnose Lyme, even though I had all classic symptoms and multiple rashes after the first classic EM. I saw the premier doc in WI for Lyme, who missed it too. By year 13, I was partly paralyzed and really struggling to say the least. Life-saving IV abx helped get over the first hurdle. Dietary changes and many different things over years maintains. I still live with major disabilities including but not limited to MCAS like immune shift. No doctors in WI and still denial. Don't know how many times I've heard "no Lyme" in WI....and have lost family members and so much more, and went through court trials etc. the gamut. "No Lyme" in a state that was known to be Lyme endemic back in the 80's...travesty. Lyme "docs" in most areas are charging to much money that no one can afford treatment. It is tragic.

Even with a fully positive Lyme test every titer or strand came out positive ... my orthopedic couldn’t believe the test he had to keep a copy 10 out of 10 and 3 out of 3 I went to an infectious disease dr he told me it’s in possible I have Lyme since I was trying to train for a marathon

I have one family member that was undertreated several times leading to all sorts of issues including missed coinfections, lyme carditis, etc. Another was misdiagnosed for over 20 years despite asking for lyme testing to be done.

What is your opinion on symptoms that people get/have after a round of antibiotics: they are what other doctors call/label as “post residual Lyme symptoms “ are they real symptoms or in a patients head or your bodies reaction to whatever makes them post residual symptoms? Thanks.

Many doctors are still misinformed about Lyme; Lyme affects all organs and systems within the body and they( doctors) are still stuck on the text book bullseye rash and still dismiss other symptoms

Yes! A family member tested positive with Lyme and co-infections and the doctor’s recommendation was NOT treat. We will not see that doctor again.

All doctors we have seen here in NC disagree. Some told us that my sons twitching was because I was calling attention to it and it should be ignored (that was a neurologist!). Dr Cameron was the only one who would treat the symptoms. - this kid is no longer twitching-! It was a long road and will be a lifetime of healthy eating but we are so thankful we advocated for our son.

I live in Canada? Do you have advice on help here? Thunder bay 7 years was refused tests for 7 years found out because I have lab tech who works in veterinary medicine and took blood sample which showed trace of lyme. Until this year I hear that do believe we need testing dur to ticks found. I have no family doctor and herbal treating myself. I have completely lost my life as I knew it and only 54 and feel 70 at times. Have found promise in what I am using now more good days then bad. I would like to be able to get tested like a human:( I would like to see if I can still be cured.

I tested clear postive on multiple WB's and STILL couldn't get proper treatment during the Acute Phase, it took 3 YEARS to get proper Tx and then it was already chronic. It was a living nightmare.

If u dare to say u have chronic Lyme to a doctor they just give u the stare lol 😂 it’s awful honestly !!! We get no help what’s so ever

I went to a doctor when I first noticed a strange bite behind my knee. That doctor dismissed it as a spider bite, but it seemed different to me. The next day I went to another doctor, who luckily agreed with me. He treated me for a tick bite before the test results came back. I was on antibiotics for 3 days when the bullseye rash came up.

The only time I feel better is when I’m on doxy. Three bulls eye rashes. Three 2 week courses of doxy after each bite. Permanent fibromyalgia symptoms.

I was never positive & boy was I sick & out of my mind

At least our dogs and horses can get diagnosed and treated. Our medical system is so broken

Crystal, you may find some useful info on his page as well...

Just get a case of acne. They'll give you Doxycycline for a year no questions asked.

All doctors we have seen here in NC disagree. Some told us that my sons twitching was because I was calling attention to it and it should be ignored (that was a neurologist!). Dr Cameron was the only one who would treat the symptoms. - this kid is no longer twitching-! It was a long road and will be a lifetime of healthy eating but we are so thankful we advocated for our son.

THANK you!!!!!

F

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3 weeks ago

Dr. Daniel Cameron

I am posting the second of a series of short videos to explore topics I have seen in my practice.

Lyme disease can make it difficult for a child. Their symptoms have included severe fatigue, disrupted sleep, poor concentration, headaches, anxiety, irritability, lightheadedness, abdominal discomfort, and pain.

I have had children in my practice with clinical presentations that are yet to be fully understood including postural orthostatic tachycardia syndrome (POTS), pediatric acute-onset neuropsychiatric syndrome (PANS), movement disorders, and atypical seizures.

Lyme disease can also be difficult for the family and the school.

I find treatment helpful.

Have you known a child having problems with Lyme disease? Please join the conversation with others in the comments below.

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Thanks for the tips. I am also holding onto faith.

My daughter was exposed to Lyme disease and several other infections through me. I had emergency surgery at ten weeks pregnant and needed a massive blood transfusion. After a childhood full of health issues, we believe she was re-infected at an outdoor camp that she attended through school. At age 14, she was finally diagnosed with multiple infections. I won't bore you with the story of our journey to get answers. It mirrors nearly everyone else's story. She dealt with anxiety, depression, paranoia, rage, tremors, social issues, aches, pains, stabbing pain, stomach issues, headaches, fevers, falls, and more. She was diagnosed with sinus tachycardia, postural orthostatic tachycardia, and vasal vagal syncope, all related to the infections. She lost most of her childhood. She went to school, came home and slept until supper, and then went back to bed in order to get up and do it all again the next day. She is now 22 and still undergoing treatment. She has been on heart medication for 8 years. She uses a cane for balance. She still has trouble with fatigue, pain, tremors, and more. She has come a long way, but there is a long way yet to go. Several years ago, she created a resource card with information about Lyme and coinfections that she has now sent to over 14,000 healthcare providers in Maine. She has also sent it to schools, libraries, summer camps, garden clubs, land trusts, and more to the tune of over 30,000 Lyme Resource Cards in circulation. When she started the project, she said to her father and me, "No family should have to go through what we did, especially kids." By the way, her father and I both have multiple infections, as well. She sat us down one day and said that she knew that we put all our time and effort into getting help for her, but we should also look at our own health challenges. We are still in treatment, as well. As a family, we cannot stress enough how important it is to take precautions to the best of your ability to prevent these infections. We cannot stress enough how important it is to listen to your gut and not stop until you get the proper tests, diagnosis (clinical, if necessary), and treatment. We cannot stress enough how important it is to find a team of doctors who are knowledgeable about these infections. We cannot stress enough how important it is for you to advocate for yourselves and your family to the best of your ability. We would not wish this journey on our worst enemies. If your child has been diagnosed with any of these symptoms, or diagnosed with ADHD, learning disabilities, anger issues, etc., please consider Lyme and coinfections as a root cause.

I have chronic Lyme and all 7 of my children have tested positive for Lyme/and or/Bartonella/babesia. It’s such a battle 😔

I have chronic lyme and suspect my three children have it too. Treatment is too expensive so we do our best with eating home cooked meals, exercising, and taking vitamins, drinking herbal teas, and managing daily stress to avoid inflammation. We try to practice good hygiene to avoid getting sick.

I have 5 children with suspected congenital, I just found out myself. I am positive my one guy has pots, he was in the child physch unit for 5 weeks this year... he has strep for like the 50th time. No joke. And in Canada... Alberta where my Nuero told me I don’t have lyme, bc only one person in Alberta has had Lyme in the last 5 years... not sure where they get these facts? And I’m not even from Alberta & he still didn’t get it!

Thank you Dr Cameron for all you do for us. I don’t know where I would be today had I not been able to get knowledge (which you keep giving) treatment and help all around from you and your staff. God bless you.

I have chronic lyme and have passed it to my 11 year old son. I never knew i had lyme when i was pregnant. He has autism adhd odd mild intellectual disabilty pyrrolle high copper strep now been tested for pandas pans.

We call it the perfect storm: Exposure to a poorly controlled school construction project, an unrecognized tick bite and a busy school/sport schedule which led to Lyme, Ehrlichia, multiple chemical sensitivity, food sensitivities, candida infection and activated EBV. We received a diagnosis about 8 weeks after symptoms and started an intense treatment program. My child missed 3 years of school, has had one reinfection and one reactivation. 10 years later my child follows strict food and environmental controls but is attending college and works part time. We are fortunate that we found a provider that listened and Put the pieces of the puzzle together. It takes a lot of perseverance to get through the school age years. It’s important to work with the education system and think outside the box so that children with Lyme and other TBD can continue to learn. We made lots of different types of accommodations and my child graduated on time and mastered the classes despite being very sick for months at a time. When asked, my child will now say “I’m 85 percent better”. Hold onto faith and keep trying.

Important for educators to be aware of. Reasons why multiple pathways through a high school course are necessary. Lyme, Co-infections, PANS are not well known or understood by teachers. These videos build that background and demystify what we may observe in some students. Our own children. Your own child.

Thank you for posting this. The children suffer needlessly. It’s criminal.

My daughter has suffered with attending school regularly because of these issues mentioned:(..

Neuropsychological evaluations by Lyme-literate psychologists are very helpful.

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3 weeks ago

Dr. Daniel Cameron

I am posting the first of a series of short videos to explore topics I have seen in my practice.

I have seen Lyme disease patients who have lost hope. Their symptoms have included severe fatigue, poor memory, disrupted sleep, poor concentration, headaches, mood issues, lightheadedness, and pain.

I have young patients who have found it difficult to get an education.

I have adult patients who have found it difficult to work, run a home or to parent.

I find it helpful to discuss hope with these patients.

Have you known someone with Lyme disease who has lost hope? Please join the conversation with others in the comments below.

#LymeConversations
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Marcia A Lyme disease rash can look like cellulitis. You should include a doctor experienced in treating Lyme disease in your evaluation. Call the office at 914 666 4665 if you are having troubles locating a doctor locally.

I have Lyme disease patients who initially thought to have an Ehlers-Danlos syndrome.

I talk to people all the time who have lost hope or are close to losing hope. A big factor is not having enough financial resources to get proper treatment. There are many other reasons too, why people lose hope...being too sick to leave the house...not being able to care for their children, being told by countless medical providers that there is nothing wrong with them, being in constant pain, etc. Our support group in PA is constantly growing. There are so many sick and suffering people who don't have answers or resources. Medical providers are not recognizing the symptoms of tick-borne diseases even when a person has 40+ symptoms. They are bounced from one specialist to another with no answers but lots of prescriptions to try to cover up symptoms. Educating providers is so critical, but they think they already know all they need to know. Their minds are closed. It's so sad and extremely frustrating. We do our best to educate, advocate, encourage others and provide hope. Thank you, Dr Cameron, for all that you do to help those who are suffering.

After 15 years, I was finally diagnosed with Lyme Disease. Many years of treatment brought me back from a brain that could barely function and a body that spent more time in bed than out of it. I'm still disabled, though. I don't expect to be as I was before Lyme - but I am very tired of the constant work it takes to maintain the health I have left. I constantly struggle to figure out what I should try to fix and what I should just accept at this point. It's not that easy to decide. Just when I tell myself, "Enough is enough," I start to regress and need treatment again, just to stay where I am. It is discouraging. And it is discouraging to meet newly diagnosed people who are subjected to the same medical bullshit I was,,, it makes me feel outrage that with all this suffering of so many people, it's still an uphill battle to get medical help. My experience is unfortunately not unusual at all. The hope I have has nothing to do with overcoming this disease. It comes from the lessons I've been given while wading through it. I really really understand what it means to feel confused, exhausted, short-tempered, financially ruined, obsessed with treatment, confused by options, furious at professional ignorance, marginalized by the able-bodied and able-minded culture I live in,,, yet more connected to each person I encounter or hear about undergoing any sort of suffering, and more aware that everyone is suffering in some way. Realizing that doesn't minimize our pain; but I think I feel more human.

Hi Dr Cameron. I am a late stage untreated since 1985 patient. Dx and treatment since 2015. I’m not sure she will be able to answer this but have you seen in your clinic in a lyme patient With relapsing total paralysis only able to move their eyes and barely speak and relapsing unilateral/bilateral Bell’s palsy. Many thanks

Dr. Cameron, my wife Amy Sailors suffers from Lyme and we have had these conversations many times. But we believe in the spiritual support it seems you subscribe to with your patients. Thank you for this, thank you for humanizing the horrible side effects of this diseases. More importantly thank you for creating a platform where Lymies can be HEARD and UNDERSTOOD.

I’ve been incredibly sick for the past 5 years my spouse/ partner of 30 years was incredible for the first 4 years. I’m finally seeing improvements. We had a series of additional stressors. My husband left 6 months ago and now wants a divorce. He’s completely changed and cut all ties to our life. It’s a terrifying experience. It has impacted my health tremendously. My llmd told me that unfortunately they see this a lot in their practice. Caregivers will bail when there are improvements. This apparently is so common that they want to do a study on it. This leaves me very vulnerable emotionally, financially and logistically. Caregivers need help too. I’m about to go to my llmd appointment for the first time without my spouse. It’s a very lonely disease. I’m incredibly grateful for my improvements. I’m well enough to have ptsd but not well enough to jump into mainstream life. I feel in limbo socially too. I avoid support groups because it’s all too real. I spend time with friends to avoid the crippling isolation but I find myself holding back on how hard my life is. Sometimes I’ll open up to people and tell them that every time they see me I’m sick, fatigued and in pain. It can be disorienting to them when I look so healthy. Thank you to all the people fighting for justice such as yourself Dr Cameron!

I’m the adult who has lost hope and is having a rough time running a household and keeping up with my children. I still try, but honestly all I want to do is lay in bed and wither away. If a group is created and the admin is Dr. C... I’m in.

We are new to this since early July but have been trying all sorts of things even got some doxy finally. CBD oil has made most difference. I just tell myself that all the things we have done without seemingly making a difference, have indeed at least stopped the progression. Diet changes, herbs, etc

You Dr Cameron saved my life by finally dx me with Lyme 10 yrs ago. It has been an uphill & downhill battle , but with the help of modern medicine infused with Reiki & yoga I am better 😊👍.

my son had lyme still not 100% better and out of work the last 4 years he got biomagnetic pair therapy his lyme is gone but it stomach bloat up very bad this is want lyme dose so thank you Dr Cameron we need more Doctor like you

I was given hope when I called your office and spoke to your wonderful office person..and from then on...relapses cause depression. .but knowing there are people who do care helps..keep up the good work..thanks for giving hope.

I'm losing hope. After ridiculous/variety of doc visits, it's hard not to. One has to self-teach oneself on this debilitating disease. I wonder, how do you help treat someone allergic to antibiotics? There has to be natural ways to combat this besides apple cider, etc

Son is almost 17. Sick and remission and reinfected and now still struggling with fatigue and memory issues. Since he was 5 we have been dealt this hand. In high school - charter- and holding his own. He would like to join the Navy and earn a trade and maybe continue with his dream of being a forest ranger. Anyone have success stories.

I live in Australia. It is very difficult to get the necessary help as our government won’t accept that Lyme is here. I was bitten about 22 years ago. I live on painkillers, work, look after my home and try to keep It all on track. Sometimes I am in too much pain to even sit on the couch and watch tv. Just totally frustrating. I’m not having any treatment at the moment...... it is all too hard lately.

Everone talks in this blog about “not giving up hope”. Exactly what have people done that helps their Lyme disease? 🙏🏻

I have been disabled from Lyme since 2011. I am out of hope. My symptoms include many physical symptoms not mentioned in the video.

Dr. Cameron, You are an amazing doctor !! When I come to see you at my appointments for treatment I usually like to talk about Jesus and what he has done in my life... Since this is a conversation about HOPE I would like to share with everyone suffering from Lyme disease and it's co-infections that Jesus is where I found my hope.. Please don't EVER give up and seek the Lord,, He hears you, He sees you and He loves you...… Dr. Cameron, I believe that you are a blessing from God and it was through my praying that I found you in the first place.....I no longer suffer like I did before and I am thankful and grateful that you didn't give up on me and that I did not give up on myself... To everyone suffering please invite Jesus in along with your treatment,,, He can do amazing things for you...… STAY STRONG, KEEP FIGHTING and NEVER GIVE UP !!! THERE IS HOPE IN JESUS ………. I am now doing well.....

Thank you Dr Cameron for doing this.

Thanks so much for sharing this on Facebook!!!!!

Dan, you are truly a blessing 💚

Hi Dr Cameron I am Marcia Truman and I am from West Virginia am I need some help I have went to the Dr for three months and they keep tell me I was good and I had the rash that go along with Lyme Disease and they told to go to the er if I got sicker so I went and they told me I have cellulites and sent me home and then two days later the called me and told me that my Dr need to watch me close and they have not done a thing so please can u help me

Exactly where I am

Thank you 💚

Dr Cameron do You test for Eds ? Does Lyme cause if ? My mcas is out of control . Let’s make a deal 🤝 for treatment 😂🙌🤗👋😢 but really , how disgusting is it that patients that are sick are begging drs for help and have given up . This is not targeted at you , I know you help .

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