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
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
In today's InsideLyme Podcast, I discuss 3 deaths associated with Lyme carditis and address some of the frequently asked questions surrounding this potentially deadly complication of Lyme disease. #LDScience#LymeConversations... See MoreSee Less
The three cases were untreated. The spirochetes are typically not visible in the heart once treated. It is unlikely a autopsy would be helpful once treated with the existing tests.
Does it matter which "way" we die from Lyme. The treatments are centuries old and repeated again most recently. It is evidentable whether we know about it or not...well unless one is wealthy and have money to spend on the unauthorized docs to treat you. I understand you are educating us...however..it is disheartening to read this news... because is it also very obvious doctors are not educated to see these symptoms in order to prevent these fatalies. Sigh
Lyme feels like a living death at times.
As a trail runner in a Lyme pandemic state, my heart stopped many years ago. I had a positive lyme test. I’ve been to 5+ cardiologists, not a single one has associated my AV block with Lyme. I now pace 100% via a pacemaker in 2 chambers. I pace like someone who was born with heart block but I wasn’t, it came after an infection.
I'm about to be death 4 from lyme issues 🙁 I need income for visits.
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
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.
A new study by Columbia University Irving Medical Center finds that #lyme disease patients testing positive for Borrelia miyamotoi were more likely to present with sleepiness and pain. More in tonight's #LDScience blog. #LymeConversations... See MoreSee Less
A new study by Columbia University Irving Medical Center finds that patients infected with both Lyme disease and Borrelia miyamotoi have significantly more sleepiness and pain than patients diagnosed ...
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.
At first yes, but now 3 years later and another flare up now under control, no. Dr Cameron is the best !
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.
Podcast: Inside Lyme: Ask the Lyme Doc - Dr. Cameron discusses autonomic problems, COVID-19 and Lyme disease and explores the case of a 64-year-old woman who was treated successfully with IVIG. #insidelyme#LymeConversations... See MoreSee Less
In this Inside Lyme Podcast, I discuss the case of a 64-year old woman with a history of Lyme disease who was later diagnosed with COVID-19. After treatment with IVIG, many of the woman's symptoms res...
If you're a science geek and you want to go really deep into the research that they've done with RNA vaccines, this is an excellent presentation.
Yes it's a year ago which means that the pressures of a current pandemic on the economy did not exist.
I've been wanting to see that they've done mice and primate studies on these vaccines, and this presentation verifies that, they in fact have done those.
This is a fascinating new format technology that should not be ignored.
In fact I think that Covid is going to give science the opportunity to explore some of these new technologies in a way that was not available previously.
There's too much money in the other vaccines for big Pharma to look at this as a viable market for them.
I know most of the Lyme disease Community is against vaccines, however as a scientist I always want to look at all the options out there.
As the vaccine for COVID-19 becomes available, I have found patients growing anxious about getting vaccinated. Their concerns are similar to those of Black Americans. I discuss the similarities in tonight's #LDScience blog. #LymeConversations... See MoreSee Less
As the author points out, a December poll by the Pew Research Center reported that 71% of Black respondents knew someone who had been hospitalized or died from Covid-19, yet fewer than 50% of Black Am...
Very discouraged a doctor of your stature and knowledge didn't say much about how harmful this could be to Lyme patients. The wait and see approach may work for healthy individuals, but those immune compromised, the risks are extraordinarily higher. Just the metals alome should be a concern let alone fetal stem cells!
My trust level in the CDC is VERY low. They have earned my distrust. My trust in this vaccine is low because there’s been so little testing, there’s never been a safe approved vaccine for a corona virus before, and they didn’t test it on people like me.
My understanding is that they only tested the vaccines on healthy people, which makes no sense to me. People with health conditions are most at risk of severe symptoms or death from COVID, so why didn’t they test it on people with heart disease, diabetes, multiple sclerosis, etc? Are they disclosing this lack of testing on the less-than-perfectly-healthy or will there be millions of unwitting guinea pigs?
I look forward to taking this or any vaccine for covid 19 so I can get out of my house finally! My family also takes flu vaccines and we have not had issues.
#NoToBigPharma #nocovidvaccine #healthfreedom
I will not be getting this vaccine...nor any other. I now know I had Lyme lifelong, but was only diagnosed in 2015. I should NEVER have gotten any vaccines. At 72, no longer attempt to treat.
My LLMD has recommended against it. I have also read that it is recommended by Pfizer that people who have had any sort of severe allergic reaction to anything should not have it. I'm sure that includes asthma, which is an autoimmune disease. I would think that anyone with an autoimmune disease should not get the vaccine. Lyme patients commonly have autoimmune diseases. Anyone with a compromised immune system should not get it, according to my LLMD. Anyone who gets this vaccine is a guinea pig. It hasn't been tested enough.
Also, my medications are constantly being recalled because they are contaminated with cancer causing chemicals or they are only 60% as potent as they are supposed to be. They come from China. Remember, China made defective and unsanitary masks, gowns and other protective products during the covid panic and sent them around the world. They have poisoned our dog food and killed our pets, put lead in the toys they make for our children, poisoned all sorts of food substances....and now we are supposed to trust that the Chinese, who have infiltrated Pfizer, GlaxcoSmithKline and AstraZenica, are going to produce a safe and effective product for Americans?? I don't think so.
The lymerix was such a nightmare. Like polio and small pox it needs to be eliminated.
Hey we believe them ,
Just like they believe us !
They call Lyme positive lab tests false
We are gaslighted and denied treatments!
My doctor told me not to get a flu shot because it will create inflammation. Will a Covid vaccine work the same way?
No. Under NO circumstance would I get; having been diagnosed clinically by a very competent LLMD, and knowing there are already existing drugs successful in treating. Why on Earth, being fortunate enough to have Dr. willing (most aren't) to prescribe, would I risk it? I also refuse to be tested under ANY circumstance, as a false positive could prevent me from a very long list of freedoms soon to be taken away from those who do not understand this endgame. Also, I'm NOT entirely anti-vax. I'm against the censorship of safe, effective, and cheaper drugs, for the sake of unsafe (an unproven & minimally tested vax), and 'somewhat' effective (still to be determined) newer drugs that are criminally expensive (ie. Remdesivir, Alinea, etc.).
I was told by my LLMD never to take any vaccines my immune system can not handle it. I tried the flu vaccine once and ended up in the ER I was seriously allergic to it. No thank you.
I am an RN and am looking forward to the medical people in my family being protected with the vaccine.
An MRNA vaccine that messes with the immune system sounds exactly what someone with Lyme and autoimmunity should stay away from.
From all Lyme patients have dealt with, most know better than to be fooled into believing this is about health.
I Don’t bother with annual flu vaccines not going to get this either . Keep on top of your immune systems!!
I already had it end of Febr. It was very bad and took me until October to get back to my Lyme normal but I 'd rather take the risk.
I plan to get it and am looking forward to the world becoming normal again.
I’m fearful of taking this vaccination - an LLMD told my son that vaccinations are known to trigger Lyme relapses, my worst nightmare - you brought me back from the dead after my Lyme disease went undiagnosed and untreated for many years and so it’s your opinion that I trust and I’m waiting to hear
You are a great mom
Why wouldn’t they? Lyme patients ha e been gaslighted by the medical industry for years. I will not take that vaccine. And I’m an RN
Count me out for this vaccine
One agenda... $$$
I’m happily donating my dose to someone who wants to be a lab rat. Yw
This is NOT the time to start seeding doubt. Yes there will be the odd reactor, same with flu and other vaccinations. We have had two anaphylactic shock patients in the U.K. but they were hyper allergic patients who never go out without an epi pen.
Conflation of different issues will just get more people killed. Are your risks as a post Lymes better or worse. Vaccine versus getting Covid