The appalling attitudes and narrow-minded views concerning Lyme never cease to amaze me. It’s simply more proof that the seriousness of the disease has been ignored for too long. I’d like to share some choice bits of actual conversations and incidents that have taken place between individuals who are fighting Lyme disease with those who are “uninformed”. You’ll be shocked to know that some of the “uninformed” are the very medical professionals we go to for help. I’m withholding names and quoting each conversation anonymously.
If you’d like to share your brief narration of ‘Lyme Ignorance’, please leave a comment below. Scroll to the bottom of the page to the “comments” section. All quotations are anonymous.
“I made a wasted trip to UAMS infectious disease dept. They denied the existence of Lyme Disease in Arkansas. *((^&%$%$%^ and I just sat gaping at them. We had test results with us!!!! They ask if I had traveled out of state and I said yes, to Missouri . Well guess what? There’s no Lymes in Mo. either. Sigh. Wonder why there is a Lyme Disease clinic in Mo?”
“Infectious Disease clinic here in Arkansas is a JOKE!!! There is one Lyme Literate doctor I know of in Little Rock but he is maxed out at 500 patients there and is currently opening a new practice. I can Not post his name here because our witchy government likes to make our lives harder and theirs for GETTING WELL! My daughter and myself both have Lyme and had Rocky Mountain Spotted fever right along with it, she also got Mono with hers. The co infections are real but you need a real Lyme doctor who can spot them on many symptoms because the testing is wrong on these so many of the times.
That being said 5 years of fighting tooth and nail before we found anyone with a brain. I have been to the haha Infectious Disease specialist UAMS and they were as dumb as a door nail. I saw 3 doctors THREE with a positive for Lyme and an antibody for R.M.S.F. Sick as a dog my local hospital and two doctors sent me there after being bit and running fever and hurting like something out of a horror movie. I could barely walk and my lungs hurt so bad I had been having to sit up straight in bed to keep from feeling like I would drown and you know what they said to me. Have your heart and lungs checked and loose a little weight! LMMMMMMMMMMMMMMMMMMAO!!
So I did and my heart was fine but that doctor did something the others wouldn’t nor would the I.D. CLINIC he ran all the proper blood work and found it was NOT my heart it was LYME. It was effecting my lungs and red bloos cell count which I am sure you all know what co infection causes this with Lyme by now. My point here is this these real Lyme doctors know they are trying to cover up Lyme in Arkansas too. You can’t! I won’t let you and you will NOT steal another second from my families lives with your lies dear ignorant Arkansas doctors. I know of over 2,000 people in my lil area alone who have this. So to those who are lied to; Wake up it’s here!! Stop killing people and being incompetent and living in your lil fantasy world trying to make a killing off of us who are truly suffering just because you have in your mind it’s NOT here. No more will I be your victim, I tell them what I need or can’t take now and do NOT let them make money off of me with their ignorance to this disease.
They will test you for everything, tell you are crazy, make you suffer something horrible but the only choice you have is to fight and keep looking for someone who knows what they are actually doing besides draining your pocket and live savings. This disease is very complex and treating it like you would others in anyway is a JOKE. That’s all I have to say. For those of you here who are sick trust your instincts not your doctors and fight there is HOPE.”
“…..I’m in the hospital and I confronted the surgeon when he told me him and 5 other people were discussing me and we all thought it was quite funny how you have been on treatment for so long for something easily treated and thinking my llmd is a joke. He was telling me this with a smile on his face. I confronted him by saying in 2009 I was told by 3 docs to start planning my funeral. How would you feel going into a funeral home putting your funeral together and scared for your 3 kids cuz your a single parent.
I fought so hard for my life because my kids need me. Then a Lyme friend referenced me to my Lyme and tick Bourne specialist. Because of there treatment protocol and abx protocol I have a quality of life. I then rambled things that have improved. I then told him my life isn’t a joke and neither is this disease. I could’ve chose to die or fight with abx. I refuse to give up now. Why don’t you take a pint of my blood don’t treat yourself for 8 years then see for yourself how long it takes to be cured. Then he asks what is the end date for my abx. I then said do they put a end date on chemo and radiation before the cancer patient has reached or even closely reached remission?
They will end my treatment when I have hit remission. I also said that the port is my lifeline and has kept me alive and has kept 3 children a mother and has given me back a semi quality of life. So wipe that smirk away and treat me like a human. The nurse heard me confront him and said good for you. More patients need to be like you she told me. She set a meeting up with the hospital supervisor to inform her how I was mistreated and the joke of the infectious disease and surgical dept. Sorry for many typos. I am on lots of pain meds and on the phone typing this. Please pray I get discharged on or before Thursday……”
“…..My Husband’s family doctor will no longer see him cause he don’t believe in Dr. ***** [an LLMD] and his way of treating my Husband. He said the only way he would continue seeing my Husband, is if he would stop going to Dr.***** and go to Baylor. That is not going to happen!!!! We love Dr.******* and really feel he is going to get my Husband better. He said if this was just Lyme, my Husband wouldn’t be so sick….”
“…..I am one of the few that is CDC positive. A fairly enlightened urgent care doc ran the test and when I went to my PCP with it, he didn’t believe it and ran another. That one was positive as well, and so he declared them both “false positives.” Then he warned me about all the crazy people on the internet who are convinced they have Lyme but it is really all in their heads and they are actually sick because of the drugs they are taking. The worst part was the animosity in his voice towards the “sick people on the internet” whom traditional medicine has failed. Absolutely no compassion for the sick, who he is supposed to be healing, just derision and dismissiveness. Appalling….”
“I got sick and was bitten in summer of 2010. I immediately went to dr’s office and had lyme test and both came back positive for lyme. I was sent to multiple specialists who said the tests were unreliable and to take antidepressants. Now over a year later I’ve gotten sicker and sicker and can’t hardly walk, twitch, and am sick 24/7. I finally went to an LLMD a month ago who has me on doxy/metro. She said if they had correctly treated me, this wouldn’t have happened and I may have this for life. My question is besides suing, what are you’re opinions on my best course of actions that can make these doctors aware of what they did,or didn’t do to me and others. So far, this disease has destroyed my life. Up to this point I was a web developer and online marketer. I’m wondering if anyone here has any ideas of what I can do online maybe youtube vid’s or websites to constructively make people aware and these dr’s more aware of this chronic infection and not to just blow people off when they have symtoms and + tests. So maybe in the future this won’t happen to others. Thanks so much for listening……”
“…I understand what you are going through. My wife has chronic lyme disease and we can’t find a Doctor that will admit she even has lyme disease let alone treat her!!!…”
“… SO, she repeats the Lyme WB [Lyme western blot test] which, BIG SUPRISE, is still positive IGM. She calls and says I need to see an ID. [infectious disease doctor] Plus I have c diff (lovely)
So I call the ID [infectious disease doctor] she refers me to and they say “oh, yeah…Dr [Infectious Disease] does not see lyme patients” “He refers them to the health department!” When I asked why, she said, “because of the psychological aspect of the disease!” Perhaps they meant to say “because we dont know what to do about lyme so we just pretend you are crazy and the problem goes away”…”
“…Lyme is very alive in AR so don’t let them tell you differently. When my dad called the state health dept to report my case they told him they would rather not because AR is the natural state and it’s economy [is] based on people coming to hike, float the Buffalo, and other outdoor activities, so they don’t like to report such things. Yeah…..I was shocked as well. So much so that I called the head of the dept myself who oddly was a vet [Veterinarian] (human state health dept and head a vet???) Anyway, he repeated the same words to me. Yes, I am on the list just so you know. There’s nothing right about hiding and misleading people. We are in a very sad situation in AR, as it’s one of just five hot spots in the nation for Lyme but diagnosed as some type of autoimmune disease. Scary….”
“…I was armed with my LLMDs [Lyme Literate MD] phone number and my highly positive Igenex [Lyme testing lab] results, but Dr. [blank] could’ve cared less. She didn’t believe chronic Lyme disease existed, she told me I was very, very mentally ill and that I had convinced myself I was physically sick with Lyme disease, and diagnosed me as ‘severely delusional’; her exact diagnosis was ‘somatic delusional disorder.’.._________________________________________________________________
“…I think misdiagnosis IS the big problem. A case in point-me. I lived in MT. View, AR for six months in 1998 and was bitten by ticks(several ). I went to the local doctor and he said (INSISTED) it was a spider bite. Baloney. When I moved back to LA six months later ,the red raised circle (1/2 in in diameter)was still there,still tender to the point of, at times, oozing fluid. My doctor had my exam records faxed and concurred with the AR doctor, just a spider bite……It’s 12 years later, and it’s still there. I now have bilateral lymphedema, arthritis, chronic costa chronditis, Printzmetal angina, asthma, fibromyalgia, and hypertension. None of these ailments were present except for fibromyalgia and costachronditis before what I believe was tick bites….”_________________________________________________
[From a microbiologist ] – “… To the best of my knowledge, there are no Lyme disease specialists at UAMS. This is in large part due to the fact that Arkansas is not an area where Lyme disease is considered to be endemic. However, we do have a strong infectious disease group here …..”_______________________________
“…Fifteen years back my lyme specialist doctor gave IV lines to some of his very serious patients and the insurance companies were fighting him then. He put my disease in remission and I’m so glad I searched to find him, too. YOU will beat this thing. Take care….”__________________________________________________
“…I go in for a sore throat… mention I have Lyme and he tells me he knows all about Lyme. He discusses Lyme with me for a while. ……Then asks me how come I know so much about it. I answer that I’ve had Lyme a long time and have done a lot of reading. He tells me not to read so much!…”__________________________
Dr. [blank] – Lyme doesn’t exist, need to take Advil and a anti nausea drug everyday…” _________________________________________________________