Lyme Disease Science Conversations:
Facebook Conversations

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

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2 weeks ago

Dr. Daniel Cameron

Lyme disease and COVID-19 can look alike, particularly COVID-19 “long haulers.” I have Lyme disease patients who have been tested for COVID-19 several times before Lyme disease was discussed. Did your doctor discuss Lyme disease during a COVID-19 evaluation? #LymeConversations ... See MoreSee Less

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Was currently advised by Infectious Disease doc to not get the vaccine. Due to testing positive early November. Wait at Least 90 days.

What happens to Lyme disease patients when they get Covid?!

Is it safe for Lyme patients to get the vaccine?

COVID-19 virus has never been isolated.

4 weeks ago

Dr. Daniel Cameron

I have Lyme disease patients in practice who ask "Are we there yet?" Are you there yet? #LymeConversations ... See MoreSee Less

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Nice video. It really illustrates how it feels to be free of lyme. It took me 5 years to pick up my life again and since 1,5 year now i am functioning 100% again. Yes I am there! Best wishes to you all ♡ Do not give up yourself♧

Hi I have recently been diagnosed with Lyme's, I live in the UK and I'm lead to believe I sure be better as I had 4 weeks of antibiotics. I can't string sentences together I forget word and I'm in so much pain. Sure I be better and its all in my head? Feel like I'm going crazy 🤯

Merry Christmas Dr. C send my love to your family

I hope I "get there" before the money for treatment runs out. 19 months and ongoing.....

Can we discuss symptoms and ask for advice on this page? Thank you

4 weeks ago

Dr. Daniel Cameron

What has been your experience with brain fog? #LymeConversations ... See MoreSee Less

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Brain fog is when you can’t make it out the door in less than 5 trips. Even with sticky notes on the garage door you forget your keys. Then purse. Then coffee, work papers, computer, you name it. After finally getting in the car, you go to the wrong place at the wrong time where staff politely says “The appoint isn’t today”.... The next day: repeat. When I was initially sick and symptoms were at their worst, I called a Lyme Dr who said he’d call me back in 5 minutes. He told me to get 2 sheets of paper & a pen so I could write down everything after he called me back. I knew then that he would help me. And luckily he did 🙂 10 yrs later I still have glitches but overall I’m 99% better. Not I can call them senior moments, but I’ll never return to having the three modernity I was had.

Not related to this post but my daughter has been in Lyme remission for lack of a better term for three years now. Is there any risk with the covid vaccine impacting those that have had Lyme disease?

Was driving on the only road into town, which is 4 miles from my house. Got stuck because I didn't know where to go. Pulled over and called my husband to get me.

All of the above plus a weird thing where I substitute an entire descriptive phrase for a simple word. My kids remind me that once I tried to say, "Everyone get in the truck", but I actually said," Everyone get in the gasoline powered transportation vehicle." WTH is that about??!! The kids say it is because I am a retired English teacher. I only do this when I have Lyme fog.

Brain fog so bad that I stop doing what I'm doing, find myself (catch myself) searching actually flashing my eyes quickly to look left-right-left-right, then the "word, or answer or next step, etc." either comes or I'm lost in the action. I thought/worried that it was altzheimers, better now on antibiotics.

Brain “Lyme” fog is real. It’s my #1 reoccurring issue. Months of clarity and then boom. Stuttering, forgetfulness, and distant feeling from everything. Wish this issue was researched and understood more. When talking to someone who hasn’t experienced it, I feel they don’t realize the severity.

Not only did I have severe brain fog when first diagnosed, I also had depth perception problems, especially when driving. Fortunately after treatment by an amazing LLD, the depth perception issues are no longer a factor, but still have brain fog, just not near as severe.

Used to be a multi tasker but lost that bigtime! So foggy at times and very forgetful! Scarey for sure!

My experience has included: *Severe short-term memory loss *Difficulties with written and aural comprehension *Loss of ability to multitask * Difficulty with focus and sustaining concentration * Garbled words coming out of my mouth (gibberish) which I could hear, as I tried to say a normal word, but could not control/change All of the above led to frustration, which I had a poorer ability to manage than before Lyme. Also neuro and neuropsychiatric issues that wouldn't count as brain fog.

A continual battle sometimes respite but still ongoing permanent nuerological damage as mine is life long just hope I have stopped it progressing

I’ll start a task and then completely space out. It’s scary cause I’ve forgotten several times that I had the stove on. When talking I just lose my words and can’t seem to control a conversation like I use to. I forget simple vocabulary and spelling. I’m just simply forgetful 😖

Sometimes I can’t think of words or stop mid sentence because I can’t even recall what I was just speaking about!

I hope now that brain fog seems to be a long term effect in some Covid patients, it will be studied seriously.

For a while I couldn’t even grasp the meaning of a headline if it had more than three words. I was totally nonfunctional.

Both cognitive and neurological issues, loss of balance, coordination, memory. It’s Horrible!

Brain fog, I say what brain 🧠 can’t remember anything lately UGH 😑

just one thing, had to mark the inside soles of my shoes R & L I couldn't figure out what foot ... can't read more than 5-6 lines . Disassociation most everything associated with neuro Lyme ...oh thank goodness for spell check

I’m so sorry that happened to you sweetie.

Yes and one of the things that we definitely need to be asking for is Advocate to help be are our spokesperson to navigate through difficult insurance processes. It's really complex to be forced into a website or some kind of format when our brains don't function properly. #SeniorandDisabilityServices should have a mandate and a means; to be a patient advocate all the time and to take our needs very seriously.

I experienced severe short-term memory issues and could not formulate sentences correctly. Back in 2012 in Louisiana there were no Lyme literate doctors and I doubt that there are any to this day. I certainly haven't found anyone. In 2012 I got a tick bite, developed flu like symptoms and treated with amoxicillin for 21 days. Did not bother to ask for a test, since I didn't want to have any delay in treatment. I recovered initially but felt tired, was hypersensitive to sounds, had speech issues, memory problems and felt weirdly anxious. I did take two blood tests post treatment but both were negative so of course doctors don't believe me. I have given up on that and just see a therapist and psychiatrist to get medication for my insomnia and anxiety. I later developed severe sleep issues. I did have insomnia at some times in my life before Lyme, but the insomnia I have since I had the tick bite is so much worse than anything I ever experienced before. I never had anxiety issues before Lyme, but every time I have insomnia - this is still a problem 8 years later - I experience debilitating anxiety. The last two years have been worse than ever in terms of anxiety and sleep problems, but luckily the brain fog has improved. Good luck feeling better everyone on here.

Truth!

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1 month ago

Dr. Daniel Cameron

Have you felt that way? #LymeConversations ... See MoreSee Less

Have you felt that way?  #LymeConversations

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Si troppo spesso

So often Dr. Daniel Cameron Lyme has taken my career, my family, my dignity and so much more. I live as a shell of a man and have given up on getting help. This disease has stolen my heart and soul.

That is not what the doc said to me..

Sadly, it IS the end of the line for me. I was diagnosed at age 67 (2015), many decades too late after being diagnosed with mental illness for 50 years and put on and off psychotropic medications which never worked. I tried a few protocols but was unable to tolerate any of them without growing lots worse with mast cell issues. I also ran out of money to be able to continue to see the practitioners. Now, at 72, I am no longer attempting to treat and am waiting for the Lord to take me home. My soapbox: Doctors, PLEASE look for root causes of a patient's symptoms. You don't want to be my age...dealing with the challenges of aging AND the complications of this disease.

I feel like I’m at the end of the line . So sad and discussed. I just want to be pain free and happy again. The brain fog is getting worse and I can’t afford to have a video call with you . I’m on SSD which if very limited. I’m doing the best I can right now.

I know i am there with you i have one of the hardest cases out there Not trying to put anybody beneath me trust me you don’t want to be where I am talk to a doctor yesterday I have all test for mast cell Positive mind you and now he says it’s not that I have a lyme no it’s causing anything anymore why don’t they just come out and say that I’m gonna just die from it because it’s the truth they can’t help me and I have been suffering three years housebound I’m tired of fighting yeah tired sometimes hugs to you Adam I understand.

I wonder at times but still have hope it is not. 50 yrs to 70 yrs old.

It certainly feels that way so much of the time. But gotta keep the faith that the treatments will work.

Lyme patients are just not given a priority when it comes to medical research.

Yes. So much when treatment was over and I was still left with the damage.

This wasn't a class action. Only the named plaintiffs will recover anything.

Sometimes it feels that way! Merry Christmas!

It is when all of the Drs who know anything about it so not take insurance anymore.

I am a fighter and even though lyme disease looked at the end of the line many times, I still see hope in the future. I am never going to give up to become myself again.

Yes my mom certainly has!

I haven't given up. It's been a long haul and I am still dealing with how I should relate to my illness without letting it overshadow the many joys of living that are still there. The hardest part for me has been the difficulty in communicating the severity of this illness to my loved ones when I don't fully understand what is happening myself. I look healthy and functional and in-between bouts of insomnia I feel fine these days, but I am very stress sensitive. It's naturally hard for anyone to understand. I am so grateful that the brain fog has finally subsided. It gives me hope.

Seen it far too often.

When my neuro symptoms were horrific

Yes....when you run out of doctors to see and different forms of treatment. Not to mention the costs. Especially when living on SSDI.

Yes many times

Yes. Then you got me out.

Yes.

At first yes, but now 3 years later and another flare up now under control, no. Dr Cameron is the best !

shorturl.at/rNQTY

I think Lyme disease is the end of the line for most of us. Yes we're still alive but we're kind of cyborgs that have been denuded of our life. The facts are that nobody's got the balls to tell us that.

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