The COVID-19 data tracking mess is familiar to anyone who knows Lyme disease. There are still too many regions in the US where they have not been able to track cases of Lyme disease. Do you live in an area where they have not tracked cases? #LymeConversations... See MoreSee Less
We hear a lot about the erythema migrans (EM) rash as a definitive sign of Lyme disease. But the EM rash does not always have the bull's-eye appearance, as many people believe. More in tonight's blog. Was yours atypical? #LDScience#LymeConversations... See MoreSee Less
Mine was a bullseye rash in 1998. But, 4 others in the family also were bitten, and did not have a rash. In 2017, was bitten again, but no rash. Lots of system overload second time, and lots of sweats. Getting slowly over my issues, but still on an every 6 week term of antibiotics.
Lyme does not look like that most of the time, took me over 10 years to deal with this and now I'm good!
Doctors are indoctrinated in medical school. Out quacks too lazy to do there job. Don't pay them a dime. I call Bull Shit.
yes, many. including an infectious disease doctor who told me that if I had ever had any antibiotics for any reason, like sinus infection or UTI, after being infected (if I even was) it would have killed all of the bartonella and lyme.
I have Lyme, cos, toxic mold and excessive sweater exposure. Multiple environmental accidents. How does one bring up primary immune disfunction to while reading the rest
Yep. My son saw a new doctor who told him he doesn’t believe in long term antibiotics for Lyme. My husband immediately said to find a new doctor.
I had a problem with this bum last week because I needed antibiotics for a severe toothache. He may have discovered that he was REALLY helping me with the Lyme.....
I wonder if a infectious disease doctor can help better then a primary
I can't find a doctor to help me in Austin
Many. I've even been thrown out of practices. One doctor actually believed my report of a Lyme diagnosis, but when I mentioned mold exposure and mast cell activation issues, he began gaslighting me and threw me out, telling me he wasn't going to believe another world I told him. Now wonder I have some PTSD going on from all the misdiagnoses and treatment by doctors.
The classic is if your labs are negative for Lyme the dr. says that is a solid result, but if the lab is positive....well the labs can produce false positives....just not false negatives. 🤔
Every one of them except one GP who did actually listen and accept the possibility. Even the infectious diseases expert dismissed it.
I was promptly escorted out of a Neurologist office as soon as i said the word Lyme. He said I know nothing of Lyme and escorted me out.
Like the plague. 15 miles from Y A L E
I blame the CDC for giving out false information like tick free states. Plus doctors are given minimal training in Lyme Disease. There should be mandatory CME Lyme training for doctors.
Boy do my husband and I get it
yes....laughed at, I even got blocked by an infectious disease Dr from receivng treatment by any other Drs.
Every doctor in Norway. Lyme doesn't exist here according to them...
All of them. The Infectious disease doc at st Mary’s in wtby ct told me I was misdiagnosed by a kook Lyme doctor & wrote in in my file.
They don’t know anything about it, and are too busy to learn. Lymers are not ideal patients.
Yes pretty much all Of them
Worst...I was turned away by a doctor in Vergennes Vermont. Timothy Bicknell. He said that he didn’t believe in Lyme. I told my story to Vermontlyme.org who did nothing. I feel so bad for any Vermonters with Lyme going there.
I know total infectious diseases departments that are forbidden to use the word lyme or late stage lyme, in some of the greatest teaching hospitals in America.
Yessss!! I was told “you don’t have enough Lyme to make a margarita “ 🤬
Frustrating beyond words.
Yes! Lyme is like a bad word. As soon as it’s uttered, one is labeled crazy. Very similar to Hydroxychloroquine 🤭
Nearly every single doctor I saw over more than 25 years refused to discuss anything Lyme related. One PC doctor actually said to me, “I don’t know anything about Lyme, and I don’t intend to!” Period.
Actually prescribed NSAIDS for life repeatedly. I refused Vioxx fortunately.
Our problem was doctors telling us our children weren't sick. Thank God, we were blessed to find a doctor who not only diagnosed them, but treated them until all symptoms were gone and there were no relapses. Two out of our four children took antibiotics for approx 6 years.
I believe I'm in a hard flare now.. my spine is being attacked creating issues with almost every joint. Changed chiropractor and it's not helping as much.
Many doctors consider PTLDS a syndrome rather than an infection. I am reluctant to dismiss PTLDS as a syndrome until we have a reliable test to rule out an infection.
Actually, I do have PTLDS but I called it chronic Lyme because I was never diagnosed in the first place until I was 67. Misdiagnosed with "mental illness" for 50 years and Fibromyalgia for 20 of those years. Am unable to treat at this point due to many complications: mast cell issues, mold illness, etc.
Pain meds for life
Yes. Boy I wish you were my doctor lol.
Tons of regular docs and no diagnosis for any of the issues.
when I lived in NJ I believe it was, treated 3 times with ceftriaxone but I read that along can not stop it. It has been 20 years I now live in SC and the medical system here is scary. I somehow contracted MRSA 4 years ago it brought on all the symptoms of lyme many co-infections 3 very deadly, KO,PA,EF two surgeries to cut all three out, two weeks apart and giving no antibiotics. I had 42 open deep wounds over my entire body and every doctor I went to see would not treat me I had to close all of them on my own, it took two years. For MRSA I was only given tetracycline, no IV meds. because I didn't fit protocol. No IV meds for late stage Lyme because I don't meet protocol. I have had many major surgeries and many minor surgeries. Now my GP has label me with Somatization disorder. You just can not make this up. I read about this enough times but dismissed that a doctor would not treat because of money and insurance and then label you with Somatization disorder. If you are your own patient advocate as I was taught to be by doctors from CPU,NY, you will be label with somatization. For other patients who are suffering like me, when speaking to doctors I never ask a question that I don't already have the answer to. If I still lived in NJ I would be knocking on your door
No. I had infectious disease doc in eugene oregon at Peacehealth tell me I did not have anything serious. Btw no bloodwork. I had baggies of these things ... worm like I extracted from my nose. He said check your anxiety meds. I barely ate and was so inflamed. About 50 lbs of it. This is what we pay for ? Not care at all. Sad !
No & it’s still not in the UK 😢😢
The day I walked into your office was the day I knew I found the answers to the questions I had for nearly 6 months of suffering. Thank you Dr Cameron for saving my life . God Bless you !! ❤️
Absolutely not it took over 5 years now I’m in late stage, had a spinal tap and it’s in my central nerviest system. This sucks Drs in Connecticut don’t believe in it Ugh 😑
Not in the least, well, not until pieces of my body were practically falling off—i joke, but I wasn’t taken seriously until there was objective proof. Only problem, I was ignored for three decades of horrible, advancing Lyme with underlying conditions like eds that were exacerbated by the infection. And, once the objective proof starts, it’s like a gusher, just everywhere. This should have been caught when I was twelve. We need to change diagnostics across the clinical world, possibly through legislation, to have effective identification, funding allotted for, and attention for chronic patients at early stages, all types (and, include Lyme!), because right now, it’s terrible.
No. Absolutely not. I had to figh with several hospitals before the gave me a false MS diagnossis and lyme didn't exist.
Over 4 decades to be diagnosed. Any other profession would be in prison for abuse. But it’s acceptable for Lyme.
Dr Cameron, recently i have lost all feeling in my hands when I lay down for bed until noon the next day. My right hand is worse than the left with neuropathy like severe pain. Does this sound like a lyme or co symptom? It seems the research for carpel tunnel doesnt mention the neuropathy pain.
No. A dog would have got better medical care
After multiple doctors saying the most horrible things to me, the last one laughing at me, as I could hardly lift my head... telling me that I “just had the flu” for 8 months... an immunologist finally did some testing snd told me I had 2 weeks to live and no immune system left. The only hope was bedrest and IV nutrition. I’ve fought my way back a few times, and only a very few docs have helped - until the money ran out. Am on my own, now. Docs who take insurance are the same as they were 25 years ago. And who knows. A Good life lost to Lyme & Co denial that didn't need to be.
No still isn't except for chiropractors. My latest is nerve pain in my hands. Fine if I'm not doing anything. One hand gets sharp nerve pain doing even tying my shoes, lifting a dish of food, putting my hand in my pocket, but is fine if not. The other the fingers are disjointing. I'm fairly confident it is coming from my back. The sharp nerve pain came on after an adjustment and I can't get back in now because they shut down waiting on covid testing and possible contact 3 down. What good would going to a neurologist do? Not a damb bit. The costs to pay an llmd not using insurance? Not a chance in hell to get proper treatment. So we have to mourn each new symptom, knowing we will likley keep loosing more and more motility and brain function as well.
No mine was diagnosed by a GP non functioning losing feelings in my legs. Sezuire’s, pain brain on fire. Tried stem cells 3 years ago that gave me more strains of Lyme and infections. Now wishing I’d started with a real MD not the #stem cells that have caused more damage and autoimmune issues.
Not until an MRI showed about 30 little brain lesions.
From personal observation, most chronic illnesses aren’t taken seriously unless there are acute symptoms
So I had no clue I had Lyme and it was an astute functional MD that suggested it and Igenex tested me. Before that I’ve had weird random symptoms over years and docs would test things like thyroid (which is an issue) and heart etc etc but would just blame all symptoms on hashimotos or me. Was glad to get answers and since have discovered mold too.
Yes because I did my own work and went to a Lyme doctor
Not until I figured out that I had tick borne illnesses and found providers that treated such.
i've only had one doctor who believed I was truly as sick I said I was, the only people who believe are fellow lymies.
Not by mainstream medicine. My naturopath was a different story thankfully.
Only because I have a Naturopathic Doctor!
Only one Finnish and one Russian doctor have taken my chronic Lyme disease seriously.
No. And we’ve been to dozens of doctors.
Not for many years and even now most people have no idea the amount of suffering that is involved with chronic pain
No. I was treated like a drug seeker until I couldn’t stand up without assistance
not for almost 20 years. was able to go right on disability and just live very frugally. had to sell my house to pay for $160k of medical bills...which are much bigger monthly than my ssdi....not sure how this is going to work out.
I agree. Not easy.
Yup, only took 1 week off before diagnosis, before I knew what was wrong with me. I thought my 69+ yo body could no longer handle my "40 hour retail on my feet all day stocking shelves" world. Thought my body needed to recharge, silly me. After that I did not lose a day if work due to Lyme.
Yes, in many roles including caregiver to my husband who is far more critically ill than I am.
I worked as long as i could,I miss working and being productive 🙁 Lyme and Co-Infections have took a toll on me after decades and decades of ilness..I don't know how anybody can hold down a job with this disease..it sadness me of what I could have done with my life it if wasn't for lyme..I feel as if I'm always in a sleep mode and cannot function even for simple daily tasks..When I do have the strength to get out,I'm exhausted. Prayers to all that suffer,and I still pray that we see a cure.
Jesus, Mary and Joseph - No! I would desperately like to go back to work! I had to go on disability during the height of my teaching career. I have been in illness induced poverty ever since!
I worked for a long time knowing that my health was increasingly poor, but not knowing what it was. I did reach a point where I could no longer work and just walked away from my job one day and never went back. Sadly--or maybe not so sadly--the neurological damage and damage to my spine have left me unable to work. I was a public high school teacher and I'm actually glad that I left that job when I did. I left in 2011 before Common Core and all the craziest of the activist stuff started to happen. One thing that Lyme did, besides the things I've already mentioned, is it has left me without the ability to withstand even minor stresses. I was a teacher for 13 years and was sick during all of it. Before that, I worked with the public for 16 years. I could not last an hour at either job now.
I’m still working, but had to walk away from a very lucrative career in medical education/meeting planning...long hours, nights,weekends, travel. When I left that world, my body totally crashed. Now I answer phones as a customer service rep. My salary is 1/3 of what it used to be and it’s all I can do to get through each day. I’m grateful, but unsure how long I can do it. I miss doing what I’m best at, but don’t have the ability to do anymore. I grieve the loss of my dream career.
Worked and working full time plus part-time job out of necessity. Others have said it is remarkable and how have I managed to do it. Sheer will and belief and faith that I would recover. And I am so fortunate! Byron White formulas and supplement cocktails have gradually brought me back!! Not 100%, but continuing on the recovery path. I wish this for everyone afflicted by Lyme and “company”.
After being off work for eight months, I’m back but only part time. I work two days, off one, then work two more. I’m physically not able to do three days in a row. The fatigue is unbearable. Even at two days, I spend the next full day in bed. I would love to have my life back.
I have no choice. I’m single with almost no family left. While my peers retire, I work full time from home. While I had the WFH gig before covid, the pandemic put the kibosh on the business travel that I was constantly fending off so that’s been helpful. Honestly, my lifestyle has not changed one bit in this pandemic—always home and rarely go out. Normal people lamenting the restrictions of lockdown have no idea that millions of us with Lyme live this way 24/7/365.
When I had to tie a clothesline around my bedroom door’s doorknobs to pull myself out of bed, I stopped working for 1.5 years.
I worked full time and was very active, pushing through it, until my body finally failed. Then part time. Was bedridden for a couple years. Now the best I can do is part time. Some days I am physically unable to even do that. I have to support myself somehow... I'm sure I'm not the only one in this predicament. --and treatment after treatment, with no real or lasting success, all out of pocket expenses.
I work, but I've had to give up my career in rehab therapy. I love my current job though, even though some days I sit at my desk and just rock back and forth in pain. My sister has had to shelve her job as a surgeon because of Lyme, too.
No I was at the pinnacle of my career as a camera op.for Abc Network Television. And my company forced me to take disability. I was devastated.but realized they were right I was never able to work again. I've had Lyme for 30 years now.
After 14 years, I returned to work as a nurse case manager half time. I was able to work from home. I was able to maintain that schedule for 10 yrs, then had to stop due to chronic pain.
I worked for the first 35 years of my life. I kept changing jobs every two to three years because I couldn't do it any more physically. I had to adapt and change all the time for this disease. And then to have to go out on disability during the last one third of my life, when my earnings potential is at its peak. Well that's devastating for a retirement plan.
Grace a mon docteur Lyme j'ai pu reprendre mon travail en juin dernier progressivement après 9 mois d'éloignement. Je peux encore travailler 2 mois à mon rythme et ensuite je devrais travailler à temps complet. Je suis encore sujette à quelques symptômes mais cela reste gérable tant que mon système digestif et mon sommeil vont bien.
Neither one of us, my husband nor I, could ever return to work at all once this crap did it’s damage. We have never got well enough!! It sucks!! AND it HURTS in more than one way !!!!!
Since my MCAS treatment I can work, go out without any help.
I tried. I went from executive track to call center part time at home to fewer hours than that, but continued to decline and no, I tried so hard, but hit a point I couldn't do even a few hours/week. As someone who is single and defined herself from her career, I'm still redefining and relearning who I am everyday through Lyme.
I used to work six days a week having my own company building advertising hoardings, now can only do couple of days then bed most of the time in pain I work in pain but it would kill me if I could not do something
No just worse and worse cannot afford to come back to you cause I caint work siezures ECT 🙁
Yes. Only part time though. Have to rest between shifts
Some doctors never learn. I hope they don't ignore COVID-19 patients who remain ill.
Mostly clinical, but with various lab tests that support my LLMD's diagnosis of Lyme disease.
Yes because I was 1 band short of the CDC positive standard.
Igenix WB test positive as well as LUAT. The state of New Mexico Department of health and several infectious disease doctors disputed my diagnosis despite my history of having gotten camping and having an oval rash in my left armpit two weeks after the camping trip. I was fortunate that there was an informed rheumatologist who started me on antibiotics and an allergist immunologist who continued me on antibiotics for a significant period of time.
Nope. The nhs just refused to take clinical symptoms into account at all. My naturopath on the other hand was a different story!
Nope. Positive bloodwork. Still no help to be found. Ruined my reproductive system.
Why is it being acknowledged that some people don't show a full antibody response for COVID but not for Lyme?
A little bit of both. Blood test clues and clinical diagnosis.
Had a positive test and first 4 drs couldn't read results.
Yes, thankfully by you😊
No even tho I had to go hospital and poison flushed out after bit , no antibiotics 😢
YES! I never, ever tested positive for anything, the Lyme itself or any coinfections. Only at a neurologist for EBV virus, during the ~wild goose chase~ process part. And she said test revealed a ~past infection~ that had absolutely ~no significance at all~ other than that, everything was always perfectly fine! Except for my health, of course... I finally got clinically diagnosed because he KNEW I had it, as he was treating patients for years already...working for a worldwide well known REAL Lyme doctor. I managed to find out about him by pure coincidence. I was doing commercial cleaning at the time and I was working at a DEP labratory where the scientists tested the water that goes down to NYC everyday. And of course, they had to go into deeply wooded areas to collect the water samples & one of the scientists had Lyme too....We were all friends because I worked there for awhile. I babysat for kids in Ct. when he needed help, kids loved me.....I would get in my truck and go immediately to help him. And he helped me, he helped save my very life! The scientists were very smart and I loved working there because I learned cool stuff too! It was then that I went from MKMG to Lyme doctor. I told him my story and filled out questionnaire at his desk. Thats very important and it shows that the doctor knows what he is doing, and CARES, ya know....He treated me immediately and he saved my life💚
Not by the VA, they still deny there is anything wrong with me. I found an LLMD who did diagnose me based on symptoms and then a positive Igenex test. That was 5 years ago. I recently got a full Igenex panel done and it came back 100% negative! So I don't know what I have but using just herbs and DSF I've recovered about 80%.
no in 35 yrs. by 40-50 drs. i heard about IGENEX LAB western blot & had my blood sent there. i was cdc POSITIVE. that's how i got my diagnosis! betty gordon, ames, iowa
Nope. I was told it was fibromyalgia and stress. It was a physical therapist who I told that I just felt like I was deteriorating who said. "You are. I'm watching it weekly. I can't give medical advice, I'm not a doctor. But if it were me, I'd go see this guy." And he handed me your card. It was another 5 or 6 months before I picked up the phone. I had a hard time getting past that my "Yale" doctors could be so wrong. It was 9 months of treatment in 2015-16 and "knock on wood" i'm still lyme symptom free. Oh and apparently my "fibromyalgia" must have resolved itself.
Big Shout out for UNiversity of Tennessee Medical Center ER and team of Docs. They treated me with respect and knew a little about Lyme And Co. and now know about our esteemed favorite Doc Cameron. Don’t ever want to go back to an ER but Gave me hope.
Not by my PCP. Still exhibiting symptoms after 3 weeks of Doxy AFTER diagnosis Sept '19 I cried when I left his office empty handed. Unbeknownst to him I was already researching for an LLMD. Well this LLMD still has me on antibiotics, it's been a year now. I was still hurting at Christmas time. Turned the corner around Feb then got C19. A bit of a setback. Doing much better, yet I still have some bad days thanks to full moons.
Holistic center with a renoun doctor who couldn’t take insurance! I wish I could have seen her!
I had a better chance of hitting Lotto, then be taken seriously. The doctors I saw were completely stumped over my symptoms. Except one who said he thought I had Lymphoma.
No! I had my hand patted and was told I was probably depressed, anxious and needed a vacation. All true but I was soooo sick. Took 3 years from exposure to treatment.
No. Even Cleveland Clinic wrote in my chart they thought it was "all in my head"! 😡
It’s ‘all in my head,’ and now it is....
Hahaha..no. Not even when I was dying..thank god for my naturopath
My daughter tested positive for Lyme. She had 2 months oral antibiotics that I pulsed with herbs and colloidal silver. She now has ocd phobic tendencies and brain fog. Suggestions? I do have a Dr who is somewhat open to treating her but he's not educated in Lyme.
Why no discussion on the fact that tick borne illnesses causes deficiencies in the IGg subclasses 1-4. The same part of the immune system that makes antibodies. A challenge pneumonia shot or same with blood work done prior and after can reveal a problem with the body making antibodies. In early lyme disease there was studies done regarding the affect of tick borne illness on the this part of the immune system.
I am always wondering what is safe for me. At the moment I am debating getting the flu vaccine, what is worse for Lyme patients, the vaccine or the flu itself?
Worried about the covid vaccine becoming mandatory! Was told to never have a flu shot!
My son has had Lyme for four years ! He has had every symptom ! He still can’t stand up for more than 6 seconds he is really weak ! What should he do from here ?
I want to ask if anyone plans to make it mandatory. I don’t want any vaccines since the flu shot made me so much more sick back when I was undiagnosed.
I feel the same way I haven’t gotten a flu shot in 12 years due to Lyme - confused whether I should get flu shot, shingles shot and maybe one day Covid ??
My LLMD cautioned me against any vaccines, period.
what are the SPECIFIC INGREDIENTS in ALL the vaccines? flu shots have formaldehyde & mercury in them!! no way am i taking that. i'm allergic to formaldehyde boards even. .... betty gordon, ames, iowa
In those countries where a direct or indirect compulsory vaccination imposes the Covid vaccine on Lyme patients, there is nothing but euthanasia on chronically ill people! This m RNA vaccine will have fatal consequences for Lyme patients, most of whom already have a misdirected immune system...For many (fortunately not all), even the tetanus vaccination has become a free ticket to the need for care... This is what happened to me, for example. My immune system is only able to fight viral infections in a natural way, the Lyme comes to life to an indescribable extent...if the switch in the immune system has taken place correctly, it is irreversible, lifelong (specific immune defense is immunosupremiered and the unspecific overactive MCAS...) Each vaccination then becomes Russian roulette. I myself probably already had Covid 19, was with 2 contact persons in between, contact person to someone with Covid. All had fever and dry cough. I got a sore throat and dry cough, Lyme disease, three days of sleeping and then it was gone (fever can't help my immune system). But it also shows that it is good to see Corona sober and switch off the panic mode... Careful yes but no panic. Translated with www.DeepL.com/Translator (free version)
Hello, Dr. Cameron. Do you think Lauricidin (information on destroying biofilms via The Kessler Institute) will help to mitigate Lyme neuroborreliosis? I’m 17 years into this, and it crossed the BBB about 11 months ago; I feel like I’m slowly disappearing. Should I take an anti-convulsant (Lyrica) with it? I finally found a lyme-literate doctor (today, online) a city away (will call him Monday), though self-treatment might still be on the table. Also, ‘How you doin’?’
MY TRUST IS IN ME !!!!! which is why i'm going to see Dr Detrich Klinghardt to treat my Lyme with Hyperthermia ....
sadly ........so very true..........we have been neglected and abandoned by the CDC and the Medical Community.........CAN'T THEY READ NEW RESEARCH.........IT'S NOT ROCKET SCIENCE............JUST A BACTERIAL INFECTION.........
All of us in the Lyme community have distrusted the CDC for years. They have negated, minimized and hidden vital information from the public concerning LymeDisease and its seriousness to the health of us all. They have colluded with Big Pharma and the insurance industry and some of its members have lined their pockets with kickbacks from the vaccine programs—definitely sleazy. Why SHOULD we trust them?
In my honest opinion, they've been horribly failing us for decades. Their denial and negligence concerning - among other things - concerning Lyme disease has been criminal.
I think it is CDC Karma time for how they haven't helped Lyme patients.
My trust in federal medical entities can only be expressed with a negative number.
CRIMINAL DEPT of Corruption. CDC.
Their hobby is to kill people by denying necessary causal treatment. Trust them zero...
The world is finally seeing what we’ve known for a long time 😐
Nill! I'm 72 and am in torture from insomnia due to the complications of late-stage Lyme disease and co-infections...diagnosed 60+ years too late.
I havent trusted them since the refuse to help Lyme patients
Zero trust in either organization. The CDC is a for profit vaccine company thinly disguised as a reputable health organization & authority
What diseases do they control again? 🤔
no trust at all.
havent trusted them since i found out i had Lyme
It’s been low since I came to the painful realization that they pushed bad tests that would miss many Lyme infections, propped up corrupt IDSA doctors who deny Lyme and persecute those who treat it, perpetuate the climate of fear among doctors to avoid Lyme patients, hide evidence of chronic Lyme while lying to the entire world about it, and willfully deny or ignore evidence proving them wrong. The CDC is ultimately responsible for the worldwide epidemic, denial, and mistreatment of Lyme and Lyme patients. The world saw their false statements and head-in-the-sand approach during the Ebola crisis, and now, it’s even more apparent due to the massive scope and speed of the COVID19 pandemic.
I found the CDC data for Lyme to be 6+ years behind and inaccurate at that. When I had COVID-19 and was referred to CDC for self care instructions I found it extremely unhelpful - disappointed, but not surprised.
You know what's going to set me off? If and when SSD accepts chronic covid-19 as a disability after only a year of infected individuals and we still after thirty years can't get SSD to listen to chronic Lyme patients. I know it's coming though. And we once again will be ignored.