Yes!! While I was "reinfected" in 2017. It is now widely believed according to medical records and time lines that I have had Lyme for more than 20 years. One reason for this belief is all 3 of my children are also Lyme positive. With each one there are concerns but otherwise asymptomatic. My oldest has a non-labeled learning difficulty. Despite numerous test there has never been a clear diagnosis. My middle child has zero long term memory. My youngest is extremely emotional with high anxiety. But there isn't an easy path to determine what are normal "flukes" and what is actually Lyme provoked.
I was yelled that by a doctor. Very sad. 😭 Since improving I have always wanted to jump back in his office one day and yell I certainly did have Lyme ! I fired him! After a negative western blot and that treatment. I hired another doctor. A Lyme literate primary doctor. My test came back positive on a igenex test through him. Now after treating Lyme and co infections. I improved greatly! I certainly did have Lyme. I suffered years in debilitating pain, chronic fatigue and fevers daily and depression so bad I tried to end my own life in 09. No one knew what was wrong and I was wrongly diagnosed Lupus and Stills Disease and depression. Im still suffering but not nearly as bad and my depression is not bad at all I honestly improved from the hell I lived.
I was thankfully treated and under control but After 3 years my neurologist ran some blood work and Lyme testing as he does every 6 months he found a new band showing as positive so he’s put me back on doxycycline. I’m so grateful he doesn’t want to wait for the typical 5 bands to show
My cousin who lives in Hudson Valley had Lyme "twice" yet because his doctor told him it's gone he believes it yet had to have much of his intestines removed and is in constant pain and skinny & frail because he can barely eat. He can't understand how I could possibly still have Lyme Disease. I have had more than one MD pretend I couldn't possibly have Lyme Disease or Babesia. Lyme Denial is a Disease spread among medical practitioners with no known cure until they get bitten themselves.
I had half a dozens docs tell me I didn’t have LD despite positive WB from IGX. Thank goodness for the 3-4 docs in NM who were willing to treat an illness they had to learn about as we went forward. Fortunately at that time Dr, Burrascano and a Pediatric neurologist were willing to consult with my local doctor.
That’s exactly right. I’m so grateful For your page. At least there’s a doctor that understands and accepts the diagnosis. We are moving and I’ll be leaving my doctor I’ve had for decades. He’s the one that tested me first and believed me over two infectious disease doctors who refused to believe lyme carrying ticks were in NW Iowa. (Like there was a Sign for ticks midway through Iowa saying no ticks allowed). I’m worried I won’t find a doctor willing to keep me on doxycycline and keeping track of the symptoms. Thank you for your page. For some of us, it’s the only sanity we have.
Change is coming Dr. Cameron, because of people like you. I will never forget you. ❤️ Thank you.
"YOU DO NOT HAVE LYME DISEASE " over and over again...
Wasnt an impression it was said out right
Dr Cameron, do you think that lyme and co infections will ever become part of mainstream medicine?
Ugh Janet Clark Berkley
I has 2 positive NHS tests even then told it could be something else 6 decades of Lyme before I found out even then no diagnosis or treatment for Chronic Lyme
It's amazing how many doctors are so ignorant and arrogant about their knowledge of tick infections. I only wish we could go back to them and sue for the amount of tirne, money and anguish they caused. Because they were wrong. And their ruin lives because they don't treat during the limited time we have after being bitten to hope for a cure.
Yes I've seen so many doctors with no results and dont know where to go or who to see,this Scenario just boggles my mind as to why someone that calls themselves a doctor cannot help us! just majorly disappointed and feel so helpless in not being able to find help
Australian government offers zero treatment and refuses to recognise it
That “brilliant” neuro doctor at Columbia wouldn’t even listen to me when I asked him to ask Dr Brian Fallon at Columbia about Chronic Lyme. That was almost 20 yrs ago and I’d bet he would never admit that he was wrong today.
Yes! I have been told i was treated so i am cured...i should seek therapy.lol
Absolutely. There are doctors that would accept that a healthy individual suddenly developed multiple diseases/issues rather than accept Lyme.
YES! I was told I could have anything but Lyme. Unless I had been to Connecticut, and my Positive test was false. I was told I was stressed, depressed, hypochondriac, looking for attention, Crazy, etc but definitely NOT Lyme
Ofcourse. Every doctor.
Every time I go to a new doctor.
Yes. An MIT doctor told me that I couldn’t have Lyme, I had 30 days of doxycycline.
If left untreated, Lyme disease can progress causing heart block and other cardiac problems, including cardiomyopathy and myocarditis. It's critical to identify and treate Lyme carditis early to minim...
My daughter had severe toxic vacuolation and the dr ignored it, gaslighted me and labelled me MBP. I'm an RN and know lyme when I see it.
I’m thankful you haven’t, we need more doctors like you who’ve taken the time to learn all the symptoms and how the bacteria and co-infections behave in the body. Thank you for fighting for us and searching for for better treatment options so we can have a better quality of life.
No, not buying it. Some may have other underlying conditions that additionally need to be addressed. Understanding one condition alone, can take some time. How the two conditions affect each other may require additional discernment. Never give up being the best version of your health.
No, I call it chronic Lyme or persistent Lyme. My llmd refers to it as that as well. He doesn’t say post treatment Lyme disease syndrome.
My daughters treatment from GP was piriton and 7 days fluclox. 13 yes later....Cowden, several months pulse dosed antibiotics, hydroxochloroquine, anti parasitic and a year later, picc line etc. Twenty thousand pounds later. I've got my daughter back. She's able to run every day.
Most conventional doctors don't seem to know that chronic Lyme has been scientifically proven by Dr Eva Sapi & colleagues by discovering Lyme persister cells in patients after antibiotic treatment.
Definitely not! I’m glad you’re one of the few doctors that really know about Lyme! 💚
Um....was treated for yrs to no avail...plus extra symptoms post treatments. It was chronic Lyme. Using Beyond Silver Liquid. Getting well. 👽💚💚💚💛💛💛💛💛💋
Absolutely...a Children's Rehab hospital..everytime we mentioned Lyme the Dr. would say that ...like your over that get up move on
We call it Persistent. If one treatment doesn’t work, try another. Be consistent and Never give up. Each infected person is different and responds differently. Each doctor has a bag of tricks and one or a combination will work. Keep trying.
Chronic lyme but we just deal with the aftermath and manage symptoms best we can
I have. I had residual joint aches and pains and major gut problems. I went to see a homeopathic MD and he helped me get rid of most of it. (But there is obviously permanent damage after 10 years of walking around with Lyme disease)
I can’t even get that dubious label. I have Lyme specific bands plus symptoms and history consistent with a diagnosis of Lyme, but I have never tested CDC positive.
No I haven’t bought into that title. Do you think they labeled it such because the coinfections weren’t recognized, tested for and treated??
Not a chance, considering none of my treatments, nor "post treatment" treatments have helped. In many ways, I am worse.
No. Luckily I received real treatment. It took years but I am better: pain and Med free. Working full time and serving my community.
It never went away and took 2yrs for a LLMD to correctly diagnose even though I had a rash. 15 yrs later I have memory issues, chronic fatigue and brain fog enough to not be or do what I used to. I'm a shell of that person. No one cares or I'm too tired to fight anymore
Well, since I've had it since long before I ever received treatment for it, no, I do not. What was it called all those years before I was treated?
How can it be “post treatment” when many of us were never treated to begin with?
In Germany, they called it late stage Lyme
Chronic is right! Also, for me, it comes and goes.
No I have not bought into it. Dr. Alan Steere himself proved in an article citing his own research back in the 1990s that the Lyme persists even after antibiotics are given. Why he would refute his own research a decade later is beyond me!
My Lyme tests are still positive after being diagnosed in 2014.
Nope. It's based on a model that only recognizes acute infections and ignores the evidence of treatment failure and refractory or persistent infection.
Since Covid is like Lyme and many MDs trained in Western medicine do not understand - the society is in trouble
This is why I wasn’t properly diagnosed!!! My doctor insisted it was menopausal ! And I had to fight her for a diagnosis and for antibiotics 😢 5 + years later and I’m still miserable
My heavy nightdeats did not start until I had a pneumonia injection to to how my antibodies worked. This was yrs after I had gone through change
You don’t want this blood parasite in the blood supply. I donated for years because I was never diagnosed with it.
Not only night sweats, my Lyme symptoms became much worse during and right after my period. It would start with night sweats, then we moved on to the crippling anxiety, then the heart palpitations. Every doctor I told this to looked at me like I was from outer space. I was told it was ptsd, then another doctor told me that it was reflux, then another doctor told me it was sleep apnea & night terrors. 2 of them wanted to prescribe the new form of Prozac and the other doctor Xanax. I said no way to the medications. And thankfully after so many antibiotics it has gotten much better. I had the ammonia smell when I first became sick again and that was another symptom the doctors would shake their heads about. Thankfully, the constant burning smell has gotten 85% better.
Thank you Dr C. Xoxo. I’ve been having hot flashes since Lyme diagnosing in 2011. Babesia possitive. It doesn’t stop. Soooo depressing.
3 years ago I finally was tested by a LLMD and learned I had lyme, bartonella and babesia. And in parallel was chasing Dr’s to help with sinking hormones.
Exactly why it took me years to be diagnosed. I was told by several different doctors that my sweats, moods, weight gain, fatigue were all peri-menopause.
I am both i think.
I’d like to know also what kind of care you offer to people out of state. Even if I have to pay, it would be so worth it! I want my life back 😢
I was... Lyme put me into early menopause. The difference for me was sweating right after I ate. Night sweats, normal but worse with lyme. The dinner time meals sucked. It wasn't heat sweats, just sweats...
Me. But there was a huge difference between a Babesia sweat and menopausal sweats for me.
Sure can ... I was misdiagnosed with menopause in my 30's .... When in actual fact it is Lyme and many co infections.
Diagnosed with Lyme in 2017. "Tested" negative for Babesia. Diagnosed with perimenopause last year. Fatigue, mood swings, lots of night sweats. I wouldn't know the difference. 🤷🏻♀️
Thank you Dr. Cameron for posting this and acknowledging this. This is very confusing for women and complicates diagnosis! I cannot tell you how many women I’ve had this conversation with, not to mention my own confusion re: is it menopause hot flashes or Babesia? Was treated for Babs in 2010-2011 while perimenopausal. The night sweats were so bad. Now in menopause. Still having hot flashes/sweats. So hard to know what is causing what!
I was told by my pcp my sweats were menopause since 8 yrs earlier I had a total hysterectomy. In those 8 yrs no hot flashes but now at night I’d wake up drenched in sweat. Funny how Malarone fixed that 🙄.
Is there a test for babesia. I tested positive for Lyme two years ago.I have really bad night sweats.I am perimenopausal.
Yeah I had that BS line said to me for about 15 years. Until I explained to them that this was something totally different beyond that and that they needed to open up their brains to other possibilities. Most of those kinds of docs are behind me and one's I'll never support again as a patient. And eventually that kind of crap catches up to doctors because now that we have healthgrades and all these other applications which people can leave their opinions about a clinic, it certainly affects their future customers. I also encourage every single lyme patient who gets jerked around by a doctor, to file a medical board complaint against them. It's time for us to push back and push back hard against these lies and deceptions, in their failure to treat climate.
The doctors began to tell me, I could be perimenopausal, when I was thirty years old. I’m 52 and I am not. I make differences, who can be my doctor now. They are not always gifted. It‘s nearly impossible to find someone who is concentrated, differentiated and systematically approaching a whole picture of individuality. Some people think, it is because of money alone. It is not necessarily so. Real interest is an exotic flower in the medical community.
I have spells ( I call them) off and on but nightime....is a nightmare! My husband sleeps in a different room because I have 2 fans on me and windows open and the room is 50 degrees😂🤣😂 Its not my change, I'm 61 and the spells only last for a very short time, except nights.
Yes me, hoping I’m in menopause now. No aunt flow for last 7 months. Have had babesia last 4 years and perimenopause...was hard to know what was causing what!!
I’ve thought for a very long time that my night sweats we’re hormonal however recently I’m more inclined to think it’s when I’m flaring up with parasites and babesia. Hormonally it wasn’t making sense after monitoring it for months it did however make sense that the night sweats are happening when I’m flared up.
I am post menopausal. I have gotten sweats many times per day since Lyme diagnosis 5 years ago. Been post menopausal for 11 years
Me. I didn’t know it could be babesia. I thought it was menopause. I was wrong.
Do you do phone ad computer consuotations and visit and will insrance pay? Can you order labs and mzil or fax the order? Please inbox
Does anyone has sweats with strong smell of ammonia?
Thank you Dr. Cameron for your persistent efforts of bringing awareness voor this terrible disease. We , my family are all victims of lyme disease and incompetence of doctors. Urinary and intestinal problems are our share among many others now the covid added injury on top of injury.
Some Lyme disease patients are not informed of opposing views on the diagnosis of Lyme disease for months to years. Should doctors share opposing views on Lyme disease with their patients? #LymeConversations... See MoreSee Less
Totally agree because before they knew I had lyme that what they did and the funny part was I work in the Mental health field so I had a lot of friends in there that told me it wasn’t mental health they knew that was the funny part
Doctors who “do not believe in Lyme” should have their license take a away. It’s not an opposing view. It’s MALPRACTICE.
Doctors can be wrong, listen to patients, open minds.
Doctors need to tell the truth and not what's politically correct or what is representative by corruption and money. I want to hear what science tells us from my doctors.
You are amazing! Thank you for all you do to help so many!
Communication creates trust.
We need educated choice
I think so but I think the education is a MUST. I have been told since I live in South Texas “Lyme is impossible”. Sadly that is not true.
When it comes to the symptoms we have, they tend to diagnose Fibromyalgia and maybe Chronic Fatigue Syndrome, but it usually is accompanied by Depression and/or anxiety and the somatic symptoms that go with those diagnoses. I hope these doctors get some kind of awakening by COVID-19 and what can happen with viral and bacteria diseases and it’s not one and done, that they can persist and wreak havoc for years.
I don’t care if a doctor thinks that maybe we don’t have Lyme disease. But for heaven sake, figure out what the heck is causing our problems rather than just sending us to a psychiatrist.
That would be nice, but we found most of them just quietly wrote dissenting opinions in our charts and then gaslighted us for years. 🙁
First they need to LEARN about Lyme AND co-infections. That a high IGG doesn't mean that we had Lyme and all is good while they look at a suffering patient. To treat aggressively and to offer the choice of natural treatment and/or antibiotic treatment. To recognize that once infections have been untreated for years, it will take years to achieve remission. And remission is not permanent.
First they need to be educated themselves on lyme disease and especially chronic lyme. Then they can give me their opinion. I find myself educating them.
Yes. People need to be educated so that they can make informed decisions. All doctors treat Lyme and TBD differently.
• ABSOLUTELY! • • the more we know, even on overload, and given anything in writing can help us do our own research after leaving your offices. • • i can not emphasize enough give any patient WRITTEN information to start to comprehend. • i was never given anything!! • • what feels good to our guts on what WE CHOSE to do for treatment. • • it will help us understand why we have been passed from 1 dr. to another since THEY don't or want to accept our tick-borne diseases, diagnose, and treat promptly. • • i wished i would have had anyone TB/LYME knowledgeable when i 1st got sick vs. being passed around misdiagnosed for 35 yrs. by 40-50 drs. •
I believe they should speak from experience, whatever that entails. Guide the patient vs confusing them though bc contrasting information will make it more difficult for the layperson to choose the best treatment options/plans. That’s a main concern. The patient can go with what they believe is best for them based on all facts and physician guidance vs not having all the facts and then later having regrets.
How can they share an opinion when the only opinion they have is its mental. I think it has to be the saddest and most devastating of all diseases.
Nothing wrong with hearing different options and about results from different treatments. But then if they actually listened and tried something that could help people and was different from CDC guidelines- they run the risk of being liable. That’s why there are so many doctors who don’t want to hear the other side.
I think many physicians lie to gain insurance billing by not being honest with patients. Being most related to Quality of Life at End of Life vs useless Chemo and Cancer Survival. I also believe they are making so much money with Co-infection ailments off Lyme they are part of the problem about the true underlying issue being Lyme. A medical empire has been built off our ailments.
Most doctors don't know much about Lyme Disease and co-infections. How can they give opposing views?
Not only that I had 2 Positive Lyme test a year apart and they still said I did not have lyme 2 different test
DOCTOR PLEASE! A DIFFERENTIAL DIAGNOSIS SO WE CAN KNOW IF IT’S SPIROCHETOSIS ! Then ask, how many kinds of spirochetes do we have infecting people in this area?
Most drs don't know there even is an opposing view unless lyme literate. Then by all means they should explain known options. That faith that you will make me better goes a long way, it's now lost in standard medical care.
Of course! But, only if they know what they're talking about, which anyone who's had it for a long time, would most-likely know!
I was a medical resident in New York City at the start of the epidemic. I had first-hand experiences with survivors of AIDS pandemic. AIDS survivors share their concerns with COVID-19. What are your concerns with COVID-19? #LymeConversations... See MoreSee Less
AIDS , LYME AND NOW COVICVIRUS ARE ALL MANMADE BIO GERM WARFARE WEAPONS. SCIENTISTS AND GOVERNMENTS NEED SECTIONING. THEY WILL BE THE DESTRUCTION OF HUMANKIND.
Someone very close to me survived hiv/AIDS for 30 years. The virus was undetected. Covid took his life in just a few days.
As a lifelong lesbian, I love Harvey Milk. Harvey was my age and he saw that people were treated unequally. He stood up for his community, he rallied them together and he brought a voice to his community once he secured a seat within the San Francisco Council. I grew up in central California, he meant a great deal to me when he lived. He was highly successful at bringing people together, to make their community joined and to represent all people equally, no matter race, sex or orientation. His actions crafted much of our current equality movement today! He floated us ALL! Having watched our brothers dying from this new pandemic of AIDS, he was fed up with it and was a loudmouth whom would not stop discussing AIDS and how to make it safe for our community. I don't know of a stronger voice in the gay community for AIDS that Harvey Milk was back in the day when the pandemic hit all of us. And I think everybody should look to the gay community for how they rallied, watch the documentaries about how we did it. We forced new treatments. Every single time I go to a Lyme Disease rally, I feel like I'm teaching people how to be a better advocate. I was part of Act Up and the gay community back from the late 70s on. My first AIDS fundraiser gained $400, which I handed over to Ryan Whites mother. We could teach clinics on how to mitigate Lyme Disease. And on another note Dr Cameron, is anybody looking at Lyme disease and lesbians? Because as a lesbian, every single time I meet a lesbian, she is riddled with infections!!! I personally believe strongly, that Lyme Disease is an STD in the lesbian community and it's rampant within our lesbian women. youtu.be/hF05_CB81c0
I was shocked because at Mayo, a student doctor saw my rash and said, “This looks like text book Lyme Disease! Can I take a biopsy and picture?” I agreed and cried when I read the symptoms...all were listed there. BUT...the main doctors there, head of infectious diseases and lawyers came into my room and made this student apologize to me for putting that in my head and that I had uncontrolled diabetes and bed sores 🤬😭 I fought for antibiotics, only getting 2 weeks, but was 100% better! Until that ran out and the symptoms came back ten fold. I want to find that student’s name and thank him for putting me on the right path, cursing the doctors that made me wait 8 months until I found an LLMD in the Midwest to treat me...his name was not in my records, nor the biopsy. Mayo has dirty shenanigans afoot.
I can only say I KNOW, because I do! I was also bedridden for several years, unable to do anything....but after getting the proper diagnosis from a LLNP and nearly 8 years of treatment, I am no longer so deathly ill 24/7. I have found it to be critically important to build up the immune system and to fortify myself in every way possible, in order to fight this disease. Natural herbs and supplements, eating gluten free, low carb, no sugar, organic foods are also very helpful. Patience and persistence are important with this illness, as it takes a VERY long time to recover. Never give up!
Don't think I'd really heard of it before I was diagnosed (1996). Ironically was diagnosed by a psychiatrist/neuro, who ordered Lyme serology without even telling me before it came back positive. Really wonder what she'd have diagnosed me with otherwise... (as apparently I was "too happy" - as I told her I had no problems apart from being ill) So I guess the diagnosis was a relief more than a shock, even though then I was badly undertreated (10d doxy 100mg - several months into infection)
I could have pushed all the icons, as I have felt every emotion. Yes I was shocked at my bad luck after hearing from IgeneX that it was Lyme. After 20 years of feeling unwell...and no help.I was told that I was crazy. I was told that I was gold bricking. ..that was so painful. 30 yrs. now. Treating myself since 2016. 👽💚💚💚💜💜
My daughters pedi ran the Elisa when I said I thought she had Lyme. It came back negative. I wasn’t having it and demanded the Western Blot. My daughter was CDC positive for Lyme. No, I was not shocked. What shocked me was the abuse, belittling and intimidation doctors threw my way as I tried to get things I saw diagnosed. She had POTS and I had to take her to 6 cardiologists before one believed she had it, and confirmed by a neurologist.
Being from Fl and moving to Ct, i honestly had no clue what Lyme was when my Dr diagnosed me after a year of going weekly complaining of what i now know were classic lyme symptoms, by then,i could hardly finish a sentence. Took about 5 years to get to a fairly normal life again
Why did you mispronounce cholera ( what you said was ko’ Lera). Where was your medical training ?
No. I had to diagnose myself since my symptoms were dismissed by nearly every healthcare professional I saw. Finally found lyme literate ones.
I wasn't shocked. I had a huge Target rash, after I was bitten. I was given 2 weeks of Doxy, and told I was fine. After many years of unexplained illness, and much research, I knew it was Lyme. I kept telling docs that I thought it was Lyme, but they knew better. I was told I needed therapy, that I had Lupus, that I had Gastroparesis and needed surgery, Arthritis, and vitamins, supplements, etc., etc., etc. I now have a lot of damage to major organs, and I'm mostly bedridden....
Not really. Many of us are misdiagnosed but treated with similar drugs. I believe many diagnosed with RA, Lupus, MS, Fybromyalgia, CFS, etc, have Lyme Disease.
I expected it by the time I was finally diagnosed, as I’d been through a dozen doctors and finally got myself to an ILADS doctor. I was relieved because I thought, All I have to do is take the antibiotics for a year or two and I’ll be completely fine. I think it was about 3-4 years before I began to accept that I probably would never fully recover. My 10 year anniversary of chronic symptoms is this week.
Yes. I never had a doctor, I was very healthy. I was very active: hiking,, backpacking, camping all on my own all over the west (so of course I got lyme somewhere there). Even though I was bedridden sick for the first 2 years....and it's been over 20 years now, in some ways I am just starting to accept that I am able to bounce back and be active and healthy., still having that message in my head that says something like "for sure you can get better"....
Most shrug off Lyme and co's because they'd "look healthy". A far different outlook once symptoms begin and we still "look healthy".
Nope, I diagnosed myself after having seen 6 different specialists 26 years ago! Now, I have a new strain of Lyme with all the sub diseases! Wish there were more successful protocols that would cure me.... I know all of you do too...
25 years and almost as many doctors before I was finally diagnosed with Lyme and multiple co-infections. It is now going on 8years of treatment....and I see such slow improvement that I don’t know if I will ever be well. But I keep hoping.
I was always a healthy person or considered myself healthy prior to the bullseye rash in December, I don’t know when I was bitten but started antibiotics immediately and sadly feel my life will never be the same.
No 30 years ago i never heard of it. I lived and worked in Manhattan and never even went camping, outdoors in grass or woods. 17 doctors kept saying did you go camping? How ignorant!!!! The only thing that really shocked me is when I appeared before the Board of a Major medical insurance company and they refused to cover it....My mouth literally hung open as I wheeled myself out of the meeting with my IV pole!!!
I suggested it early on and was told no based on early testing. With help from up above, a few bands more and several years later, I was told yes. By then, I was too far into the mental Lyme fog -- an abyss really, to be shocked. It took a long time and IV rocephin for my head to get clear before I could feel shock.
Just dreadful how Lyme patients are treated
I was relieved because I was first diagnosed with MS, but after a bit more pushing and research I found that I was positive for Lyme which made more sense cus I was always out running in the woods.
Yes, 3 years after having directly asked and being told it wasn’t where I had been camping, I tested positive w IGX. The NM DOH refused to acknowledge my case. Their test was negative.
So was I, even though I knew when I was bitten, saved tick for one month..within 1 week developed symptoms. Positive for Bart, but not Lyme, even though urgent care saw rash..bite was on head.. If only I had sent tick to be tested.. Lesson learned..😮
I cried walking across the parking lot to my car.
Took 15 years for the dx. I wasn’t shocked at all. Maybe a little validated. 9 years later, still sick found high levels of mycotoxins. I’ve never heard of asymptotic Lyme. Interesting.
What happens if there are atypical findings in Lyme disease? A case report by Sharma from the Mayo Clinic in Minnesota describes a 45-year-old man who presented to the emergency room with weakness, ch...
I posted pictures of all my lyme and co-infection related rashes and swellings on a blog I wrote so people could see exactly what Lyme and Co-infections do to a person from head to toe. mylymestorycom.wordpress.com
I had Lyme twice. First rash grew to ~8 inches wide, was very swollen and only red with no bullseye. The second time I was bitten, ten years later, the rash was tiny, ~1/4 inch wide and not swollen, no bullseye just red. Both times I was immediately positive by ELISA test, treated with antibiotics, a month later tested negative by CDC antibody western blot test by labcorp. Band 23 positive however. I have untreated CVID (chronic variable immune deficiency) and therefore have impaired ability to make antibodies.
I had a small oval bull’s-eye rash in my left armpit. Because I am part Native American, what would normally look red was brownish. Because of this my dermatologist said my rash was not a “classic Lyme lesion.” Many years later my daughter developed a bull’s-eye rash on her chest. She was infected either in utero or through breastmilk. We returned to the same dermatologist and he actually wrote a letter documenting his opinion that we both had LD.
When I was 7 or 8, I had a full body rash that the pedi couldn't identify. I'd already has rubella and roseola, and red measles came a bit later. But he didn't know what this rash was, and I started getting sick after that.
New myth: tick must be attached for 24 hours before it transmits anything. Well, co-infections jump that bridge in as little as 15 minutes.
Had a round rash on my back...it would flare up when I got overheated. Lasted about 3 years. Found out I had lyme from my infectious disease doc, got on fenbendazol protocol. Rash went away after 6 months. The rest of my issues are slowing going away.🙏
I didn’t get the bullseye rash from the first bite which I tested positive for repeatedly. I got the bullseye rash when I was bit and found a tick on my arm. The rash was clear. I have always wondered if that rash happened because I was already lyme positive.
I had a classic expanding bullseye rash and became terribly ill almost immediately. Practically as soon as the bullseye disappeared the whole area developed treatment resistant Lichen Planus that lasted for 3 years until I did 2 five day water only fasts, upon which it disappeared as quickly as it had arrived.
Never noticed tick bite or rash near the time symptoms started. Had lots of tick bites as a child, and always removed them wrong (by putting oil or glue on the tick do it'd let go... 😭)
I looked like I had a I'd burns on my face and eyes. Other strange rashes. Only had the bull eye once back in early 90s when hospitalized with "viral meningitis " and given cream for the "ring worm "
I developed PPP. My daughter developed sudden facial skin issues. Both positive for lyme disease through elsia and western blot testing.
Didn't have any rashes when first diagnosed years ago. This last tick bite last month, I had 2 perfectly circular, 1 inch wide, solid rashes on chest and lower back, away from the actual bite.
Doctors said bulls eye was a spider bite. I knew better.
Never had the bullseye rash. I had a rash all over my chest though. I believe from the ANAPLASMOSIS and ehrlicia too.
I had a big round rash on my right ankle and it was itchy and looked pretty bad but the doctor said it was likely a spider bite because tick bite doesn’t itch 🤷🏽♀️so I didn’t get treatment for 8 and a half years.
I pray always for all of us. And you know who else? The ones who don’t think any of this is real or true. God bless y’all 💕
Mine were streaks like big scratches on my abdomen. (Bart) They appeared mostly when I ate wheat or is I laid in my stomach!
Big oval rashes on thighs, hips, after Weeks of feeling extremely unwell, finally was diagnosed with Lyme and Babesia!
Bulls Eye at first,(had no idea what it was) then erythema multiforme all over my entire body for months.Then a butterfly rash on my face hot as fire
Never got a bullseye with any of bites I got. And I got quite a few.
Several rashes...all different and many locations. .head to toe
Sure did. Too bad I didn’t know what it was at the time.
I had a giant bull eye rash, on my shoulder.
Mine was a half moon rash on my boob 🤷♀️
Classic bullseye rash on my inner thigh and face. I became immediately sick. Been dealing with this monster for nearly 11 years. 😭
I'm SURE its not, but 100 days seems like a walk in the park compared to countless years of neuro pain and memory loss, fatigue etc. Not to mention years of research added to the frustration of being misdiagnosed over and over and over again. God bless us all.
while I feel bad for these folks (those of us with chronic lyme are the ones who know how they feel), i was so struck by how much press they are getting, and how chronic Lyme has been completely ignored for decades. I was so taken by this obvious disparity when watching a recent CNN interview with "long-haulers". www.cnn.com/videos/health/2020/06/23/coronavirus-symptoms-long-haulers-newday-vpx.cnn In the interview, he says: "There is nothing like this on earth." There IS something like this on earth: Chronic Lyme Disease! 9,125 days and counting. Oh! what i would give to have had this for only 100 days!!
So true .so disappointing that Lyme sufferers are totally ignored by the government of Australia . My daughter has Lyme and has suffered terribly for 18 years ... its appalling that there is no support nore even recognition by the Australian Government and even poorly understood by the doctors . Such a ridiculous and devastating situation for Australian sufferes
Finally diagnosed in 2011 with Lyme, Babesiosis , Bartonella at age 51.. misdiagnosed for years..was told I probably had it since I was a kid.. had to give up a 32 year career in law enforcement as I just couldn’t function anymore
My first 100 days when Lyme sh*t hit the fan, after a prologned period of being very tired but still functioning..... I was basically bedridden for 2 years, unable to do almost anything. I had a sinus surgery and was tiredly functioning, literally the day after the surgery I couldn't get out of bed for 2 years.
As a “long haul “ Lyme sufferer, I can relate. All of the MILLIONS of us with chronic Lyme Disease have been ignored and ridiculed, disparaged and denigrated for YEARS. Our medical community have washed their hands of us for so long, we have managed to stay alive (barely) by doing our own medical research and learning as much as possible to try to heal ourselves. THIS is, perhaps, the greatest medical holocaust ever perpetrated against so many people ever in history. I do feel badly for anyone who has had to deal with Covid 19 virus, but because the world has gathered together to fight it as one, the international attention will focus on finding the solution to a vaccine—if not the cure. Meanwhile, more then 45 years after this “mysterious” disease first hit Old Lyme, Connecticut, upwards of 500,000 new cases of Lyme Disease are diagnosed in America each year. And we are still waiting for help, still hoping for a cure, and still suffering.
Wow! I've been sick as a dog for the last 10 years! And gradually growing worse. At 72, with severe pain and insomnia, it's not a pretty picture.
I’ve been sick with Lyme with over 80 symptoms for 12,775 days
It has been 30 years and I still suffer from the damage Lyme and babesiosis did to my body. I contracted Lyme more than once form several different tick bites. I am not the only person that I know of who sufferers.
Sounds vaguely familiar. Pffft. An article I shared yesterday mentioned jerk doctors discounting symptoms. Shaming patients and rolling their eyes at them. Basically saying they were FAKING or neurotic (like MS patients just a handful of decades ago). It’s a novel virus that docs and big “experts” Can’t Get right and admit they don’t know, but yet can discount symptoms and tell a person their time’s up and they’d BETTER get better? Good grief! Those docs need to be outed and put away. Do no harm INCLUDES harassment and mental/emotional ABUSE. Most of us have seen for years. It’s like some sort of ego cult for many docs. We’ll see “post covid” suicides soon , and due to these jerk heartless docs putting people down for being SICK, offering no compassion and hope. Punishing for being sick and fragile, which NO one Wants to be. What a surprise! (Sarcasm).
I wish I was only sick for 100 days. I have been sick for over 3,000 days so far and still counting.
I hope they aren’t ignored and forgotten like we have been!
Aye, aye, aye... After surviving many decades w it, there's not enough room here or time to go through the list. That would be selfish on my part. 🙂 I suppose that's what diaries are good for.
It is crazy the lingering effects people are having! Just hope these symptoms are NOT marked off later as delusional issues! We have no idea the long term affect this Virus will have on the infected.
How does it feel to be sick for over half your life? #painful #sucks #chronicillness 💚
Lyme is way worse than the covid, the covid came and went but lyme it just seems like I cant shake
Get tested for Lyme Disease!!!!
20+ years here with Lyme and coinfections.
Ja już 5 rok chodzę z zaburzeniami rownowagi, już nie wiem czy to objaw boreliozy.
Familiar in many medical instances, unfortunately. The long-hauler Covid symptomology reminds me of AI disorder or ASIA and it quite parallels CFS whilst encompassing many similar symptoms of LYME. Subjective symptom reporting needs to hold more weight, diagnostically. Until that happens, we’re stuck. Many illnesses don’t reveal enough objective data, at least initially (or at all).
I’m not certain if I had Covid (had the symptoms but testing wasn’t happening yet) but 9-10 weeks post infection I had the worst anxiety of my life! It was awful and I hope to never experience it again! Now anxiety is off and on plus I notice breathing difficulties I’ve never had before
Welcome to the club, coronavirus survivors. Lyme patients have experienced this for decades. Very sorry you’re also finding out these difficult truths 😞
After 8 years of being sick, I think I do have anxiety. But there's oh so much more to go with it that they don't want to hear about. I've kinda had it with the whole health care system.
So the virus attacked their central nervous system.
Welcome to the dark side. We get it.
Everyone who has autoimmunity
Sherry Chambliess Richardson 🧐
I had 50 years of mental illness diagnoses that ran the gamut. Doctors prescribed psychotropic medications. In 2015 at age 67, I was diagnosed with late-stage Lyme disease and co-infections...many decades too late. I now know I had it since childhood. I have very little faith in conventional medicine any longer.
Always the go to diagnosis-depression/anxiety.
I’ve been chronically ill three times. All three times, I was told by male doctors that it was all in my head. Following up with female doctors led to an eventual diagnosis.
Lyme acknowledgement is the same.
Lyme and COVID have the same strange symptoms! Still dealing with both!
ABSOLUTELY, Is Familiar
I wonder if there is a coinfection or fungal element the COVID19 infection?
Doctors are the ones you depend on.This just shows they even cant be trusted.T
After more than 25 years of seeking help for the multiple illnesses I had been suffering, I was finally diagnosed with late stage chronic Lyme Disease and many co-infections by a knowledgeable and compassionate woman nurse practitioner. She literally saved my life. Too many doctors—both male AND female—had washed their hands of me because they were not Lyme Literate, and because they were never trained to recognize or diagnose this most prevalent and life destroying disease. They were never “interested” enough to take up the challenge. Handing out sample packets of Cymbalta was the most they could manage, unfortunately. Too many doctors take the easy way out—if a patient presents with too many issues, they hand out ANYTHING for them to try. ...just to get them out of their office quickly. Whether it is the day’s most current medical pandemic, challenging autoimmune issues or multiple complex longstanding illnesses—many doctors simply don’t wish to spend the time and effort it might take to really help a patient. And this is tragic.
I saw a neurologist who just ignored my symptoms completely!! Told me to just live with it. Constant Vibrating sensation in my brain and spinal cord?? Severe neuropathy in my hands ???? Why did he become a neurologist if he chooses not to care for his patients ??? I’m sure he enjoyed the $$$$$ He made doing absolutely nothing !!!!! Shame on this man !!!!!
Ima Nottelln 😢
New question on different subject ------------------------------------------------------ Do you have any photos of people that have eye infections showing Lyme disease or Ms behind the eye causing swelling on optic nerve causing damage Is inflammation on nerve. She has had an eye transplant due to losing her eye in an accident from battery exploding burning trash. They will need need to do a biopsy of the nerve and then have an eight-hour surgery to remove her entire eye transplant. Do you know any eye specialist in Lyme disease / MS who you can give me a recommendation to? Huge thank you Are there any studies about these two subjects to help us tell the difference between the two of them? I'd appreciate any information you can give me promptly for a family member. Dan, thank you so much for all the good information you bring to us on your articles and other sources the help all of the unlimited tick borne community orldwide. God bless you Dan. Stay safe and well Betty Gordon, Ames, Iowa
Gastrointestinal symptoms in Lyme disease patients are often dismissed as unrelated to the illness. But new study findings suggest there may be an association. More in today's #LDScience blog. #LymeConversations... See MoreSee Less
Gastrointestinal problems in Lyme disease patients are common. Yet, many clinicians believe the two are unrelated. A study by Mayo Clinic examining POTS in children provides some supportive associatio...
avrò fatto come minimo quattro gastroscopie perchè avevo paura di un ritorno di elicobactery per sintomi allo stomaco... niente ... tutto perfettamente a posto eppure i dolori li avevo eccome... lyme... solo lyme e coinfezioni
A GI doc, wanted to set me up for surgery, to put a device in my stomach, b/c he said that I had Gastroparesis. I was vomiting several times a day. A second opinion at Wake Forest proved him wrong. I still didn't get a diagnosis, but after 1 year, everything went back to normal.
What is the cure to this?
I read that a biopsy of an intestinal lining turned up live spirochete. I think my vagal nerve disfunction was a big contributor to my GI issues.
What amazing me is how many patients know this, yet it has taken the medical profession a very long to catch on. It took years to get a proper diagnosis because the gastro issues led doctors in a long chase in the wrong direction. So many incorrect diagnoses. The autonomic issues definitely rise and fall in relation to my infections. I'm curious if others feel like this is more of a Borrellia issue or Bartonella?
Yes they are. At first my GI issues were because of parasites despite taking really great care of my gut, but last year we did a lot of testing and determined my issues are now due to autonomic dysfunction.
It was my FIRST PROBLEM! Started with GI specialist and then another one 🙄 This is never ending.
I’ve been dealing with this for 3+ years now myself.
My daughter still has neurogenic bladder and bowel from Lyme even after two months of IV antibiotics
The best my intestines ever were was when doxycycline was working for me. It was killing the bad bacteria and the acidophilus was putting the good bacteria back in.
Please educate yourself about mast cells activation. Most of the questions that you ask are from mast cells activation and not from Lyme directly.
Ya know how bad it's been in TX??? They used to put signs on dr's doors saying: "we don't treat parasites"!!!! I kid u not! If only I still had the phone that had the photo of the note posted!!!! I soooo wish I were kidding...
I'm always told it's hEDS (I don't think I actually have EDS!). Autonomic neuropathy and dysfunction from Lyme: the struggle is huge, and real.
I Am brand new to this page and desperately trying to help a friend! She's been to many doctors she's going to be seeing a new one in a couple of weeks and she's going to inquire about Lyme as it seems likely but no one has suggested or tested for it. I know several years ago when I researched it's a small amount there was a lot of controversy around which tests were accurate. Is there a gold standard for a lyme test that she can/should ask for?
My only doctor to take the time was you Dr. Cameron. I have been well since around 2009. It took years and years of wrong diagnosis’s before I found my way to you. I’m proud to work In healthcare now and I’m always an advocate for my patients. I don’t want anyone to ever feel the way some doctors and nurses made me feel.
Yes Dr Burrascano listened and asked many questions. He treated me with respect and compassion. He saved my life. He no longer practices because they have him Hell...he finally retired. Now I fighting on my own...praying I can find a Ltme literate Dr. who takes insurance.
4didn't, finally have a Dr with limited knowledge who gave me a few months antibiotics as full treatment. Guess that's a miracle but still under medicating for such a terrible bacterial infection.
Yes because my doctor was you! I’m grateful for your time and help.
misdiagnosed 35 yrs. by 40-50 drs. who took 10 minutes max with me. finally after positive western blot meeting CDC POSITIVE, got a beginner llmd in iowa who took i believe 1-2 hrs. with me. that's what we need the most ... SOMEONE TO LISTEN TO WHAT WE ARE SAYING & FEELING!! "not it's all in your head mentality"!!! so glad you spend all this time on facebook posting your articles, updates, and asking for input. god bless you dan 😉 stay safe/well from ames, iowa's betty gordon
Yes I did find a Lyme literate Dr. my first visit was almost 2hrs. there after it was usually about an hour. He listened to me & treated me as an individual not a number. Sadly he is no longer practicing medicine. This Dr. literally saved my life. Thank you Dr. Alan Inglis for treating me with respect & improving my day to day life. I am once again floundering to find help with my Lyme & co. infections. I pray someday I will find a Dr. half as good as Dr. Inglis.😇
I’ve only heard exceptional things about you. When someone asks me about a good Lyme doctor in your area I tell them you are #1
Previously. My current lyme literate infectious disease Dr. Yes. My first appointment was 5 hours long. My second appointment was 2 hours. My follow ups run generally about an hour. My husband's first appointment with our current Dr was only 3 hours. But his history is not as complicated and he is not as sick as me yet...hopefully never
My doctor - Dr. Cameron - took the time, time after time after time, as I struggled over years to heal from neurolyme, to talk with me through my fears, be straightforward and pragmatic with me, and help me find my way to a new career and strengths I never knew I had. He is a critical thinker and a thought leader in a very complex disease. I am forever grateful to you, Dr. C and your staff who always gave greeted me with warmth and caring.
My Dr took the time , but without a positive Lyme test wouldn’t treat. And then I found you 😊. Thankful!
I’ve heard that you actually don’t take the time, Dr. Cameron, and put all Lyme patients on the same protocol. Maybe you’ve since changed your practice, but I find this post a tad ironic. 🤷♀️🥴
Not many doctors are as compassionate and thorough as you Dr. C, wish they were.
Dismissed, misdiagnosed, mistreated 20+yrs
Always grateful for your help!! You are a wonderful listener and a competent doctor!!
You sure did. Game changer Thank you. So much gratitude Wish more people took time with everything in life.
Thank you for taking the time to thoroughly assess patients and their PMH.
Je suis française et c'est très compliqué de trouver un médecin qui connaisse les maladies vectorielles à tiques. Après 5 mois d'errance pendant lesquels on m'a diagnostiqué une dépression et burn out, je n'y croyais pas et je sentais que mon corps réagissait bizarrement comme jamais auparavant. J'ai fini par consulter un médecin Lyme et après 3h de consultation il avait une idée sur les maux qui me rongeaint. Finalement il avait raison et a diagnostiqué une candidose, un SIBO, une babésiose. Le temps d'écoute et de questionnement des patients est primordial. Mon médecin traitant ne m'entendait plus et avait fini par se faire des idées préconçues sur mon mal être à partir de ma personnalité anxieuse et les informations sur ma façon de vivre. Elle pensait que c'était dans ma tête et me prescrivait anxiolytiques et anti-dépresseurs !
My first LLMD for my first appointment charged me for an hour & gave me 15 minutes. I found out later he was suppose to give me an hour. When I called up to try & get some of my questions answered after my first appointment they wanted to charge me for another 30 minutes. I stayed with that office for way too long thinking that MD was the only game in town.
Yes !!! And you always listen ! I’m so fortunate to have you as my doctor 😊😊
Yeah, like well over 50 years before my diagnosis. Can't do anything at this point.
No! In fact, he told me about a cardiologist whom he thought was off her rocker because she was Lyme literate.
No doctor did ever did no, but several naturopaths did. I ended up being my own doctor with help from one key naturopath.
“Lyme disease is just as common this year as it was last year or the year before,” Dr. Daniel Cameron, a Lyme disease specialist in private practice in Mount Kisco, New York, told TODAY.
“It triggers cytokines, the inflammatory process, and by triggering the whole natural immune system, it will mimic some other infections that affect the immune system,” Cameron said. When the immune system is working hard to clear the infection, it may cause symptoms very similar to COVID-19.
Was just wondering this, as cough developed recently. ..not chancing covid testing or emergency room. Brushing teeth with 3drops tea tree oil and baking soda then gargle. LG. very hot eruptions on face. ..fever.😨 staying in bed. Yes Jill Jillian Gordon
My sons having inflammatory symptoms and now were getting tossed around to rheuma, infectious disease and lyme.
Considering that COVID and Lyme both have such abysmal tests of positivity, with only 50% accuracy, is it any wonder the public doesn’t trust the results?
I know a simple way to get the answer if it’s Lyme or covid19. Go get tested for covid 19
Oddly similar to some co infections as well. Almost like a babeisa strain.
Are you seeing covid reactivate dormat Lyme? Could that cause a positive Lyme antibody for a recent infection?
Good question Alison
Every single time I cough up congestive stuff from Lyme I also wonder if it could be something else....but I am always and only at home!
My GP thought I had Covid when I recently had a Lyme flare-up, despite not having a Covid-specific symptoms like cough.