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…” _________________________________________________________
Comments on: "Examples of Lyme Ignorance & Personal Stories." (38)
Hi I located your blog by mistake when i was searching Live search for this subject, I need to tell you your page is truly useful I also love the design, it is wonderful!
God bless you, kindrid spirit. I needed to hear that!
I live in Mountain View and was on crutches for 4 weeks until I was put on Doxy. I am almost finished with the medicine. I did not have money for all of the tick test and was negative for rocky mountain and lyme. I will get the erliciosis, tulmerinia, and anaplasmosis( sorrow about the spelling) as soon as I can afford it. On top of all of that I was bitten in my sleep by a brown recluse twice on the back of my legs right after the tick bite. I have been on the CDC regimen of 30 days of Doxy and the leg twitches are better, but they will not go away completely. My legs feel itchy and bit and this really creeps me out. I have been asking people in town of they know about the disease and each person asked either has it or knows someone with it. This town is a cluster of tick disease. My mother has rocky mountain and erliciosis. I am moving back to my home town as soon as possible. Any advice on how to get rid of the leg twitches.
Red, we’re sorry to hear you’ve taken a bite. If you were given the standard 30 days Doxy, it probably wasn’t enough. Failure rate at the standard dose is high, especially if you’ve been infected for a while. If you are still having symptoms, chances are you still have infection. We can’t give medical advice, but I would suggest you seek a doctor who is trained in tick borne disease treatment. That would be an ILADS trained physician. Please go to the link for doctor referrals and follow the instructions on how to find a doctor near you. The link is here:
I’d like to invite you the the Arkansas Lyme Yahoo Group. You can find them at this link: http://health.groups.yahoo.com/group/ArkansasLyme/ I believe you will find others there who share your plight, as well as referrals and resource information. We’re all in the same boat hear in our state. It’s sad that the state of AR is so infested with tick borne diseases yet they’re diagnosed as some other illness. Let us know how you’re doing!
THANK YOU. This is tough..
I would like to tell you a little about my Connor.
He is now 19 but since the age of 13 (2008) has been struggling with unexplained declining health. Connor was my happy go lucky, always energetic, and helpful to everyone, sweet boy. He has so many great aspirations for his future, he wants to become an electrical engineer, participate in sports, hunting, enjoy time with friends & family, travel and so much more. Yet in reality he cannot do any of these things. Connor spends his days alone, debilitated, quietly in pain, in a darkened house as he suffers from Lyme disease. During our last visit to his local family doctor in January 2014, to request the two tier Lyme test, another specialist, or anything…we were dismissed with the doctor saying to Connor “I suggest you go home, lose some weight and work on getting yourself better”! That is what Connors’ health care has come to… unacceptable!
Connor has already been through invasive brain surgery (2010), extensive sinus surgery (2011), experimental drug treatments and endless non conclusive testing without improvement, while ignorant to test for Lyme disease. I trusted our Health Care to properly diagnose and treat Connor. His health continues to decline and he is now substantially debilitated with organ & brain dis-function, hearing & sight failure, extreme crippling arthritic like condition, a six year migraine and constant pain.
I found out there was reliable testing available in the U.S. so that is the route we had to take. The cost of his testing and diagnosis was over $2000.00 as it had to be done through a private clinic in Calgary. On February 5, 2014 Connors’ results came back, he tested positive for Lyme disease. I thought my prayers had been answered, finally a diagnosis! I soon found out that was only the beginning of an even bigger, political battle as doctors in Canada are not allowed to treat long term for Lyme disease as it “doesn’t exist” in Canada, especially in the West! Yet I have since connected with countless others, children and adults alike, who are suffering with Lyme disease and their families are met with poverty trying to save them, while their hard earned tax dollars are being spent on denying them life. I just don’t get it….politics is making my son, and many others, suffer without proper treatment. It confuses, saddens and infuriates me. Due to Canada’s inadequate testing, is our blood supply safe?? Lyme is often misdiagnosed as MS, Fibro, Chronic Fatigue, Rheumatoid Arthritis, Lupus, ALS, etc. Please be aware.
I am devastated and embarrassed that I cannot afford to get my son medical help/treatment for a disease he has been suffering with for over 6 years. Can any of YOU imagine NOT being able to afford basic lifesaving medical help for your own child?
Sorry for my ranting, my head is still spinning with distress and disbelief. How can our Canadian system decide that my son is not worthy of treatment because he was bitten by a tick, yet he would receive treatment if bitten by ANYTHING else?!
If Connors’ journey brings awareness and help to just one person we would be happy. Please know that one little tick bite can rob you of your life.
Jill, thank you for sharing your tragic story. The more we share and talk, it increases awareness. You are not alone. Continue the fight and research, research, research. There are herbal remedies out there, you just have to find the right one for your child. May God bless you for sharing your story that will help thousands of others. We are truly kindrid spirits!
Thank you, I will never stop searching or educating.
Some recent inspiring news through recent awareness:
May 26, 2014 was a very important day…the awareness we are spreading about Lyme disease is paying off!
Today, I had a co-worker tell me about his wife finding a tick attached to her leg last week and they mostly knew what to do from all the awareness that has been generated. They got the tick removed, saved it and it has been sent away for testing (that was a bit of a chore with Alberta Health but it is done). His wife will be seeing her doctor to receive at least 6 weeks of antibiotics as precautionary treatment.
Then, tonight I had a relative contact me from the East Coast to let me know she is also on antibiotics due to a tick bite! She noticed a strange bulls-eye rash on her leg last weekend but paid no mind to it UNTIL she read one of our Lyme disease awareness posts and saw the identical rash from a tick bite!! She says she would not have known otherwise.
We are not pleased that either of them have been bitten by a tick but we are THRILLED they have learned what to do, what to look for and to go get help!
If Connors’ journey can help others and bring awareness, that is a victory for all of us!
Thank you to all who have read & shared my relentless posts about Lyme disease…together we will save lives. xo
Jill! Wow, we are helping prevent the disease from disseminating! I got a message from a guy in Arkansas (big problems there) who got very very sick after several tick bites last month. He went to a doctor at Baptist Hospital who immediately gave him 30 days ABX. He may have gotten on top of this in time, but nonetheless, I think he needs to follow up with a LLMD because he had already been infected for up to a month before starting treatment. I’m so glad people are finally “getting it”.
My daughter is very sick and has had every test there is and can’t find what is wrong. A Dr. At UAMS told her there is no Lyme’s in Ar. But other people have told her she might have this. We don’t know where to go to get tested the right way for this.
Barbara, The doctors in AR have been programmed and trained to say “there is no Lyme in AR”. This could not be further from the truth. I have photographs of individuals from all over the state who had the bulls eye rash, a sure fire proof that it’s Lyme, and were told “..there is no Lyme here”. It’s been documented by the Department of the Army’s Center for Health Promotion & Preventative Medicince. They performed a Lyme Disease risk assessment in 1995. See http://lymeblog.com/LDRA-USARMY83-96/100.txt. They continue to deny that this is actually Lyme in AR: it is called STARI, and the Dept of Health in AR says it’s not the same as Lyme, even though it has the same symptoms. Read: http://donotfear.hubpages.com/hub/Lyme-Disease-Hidden-Epidemic-of-Arkansas. Please go to the links section of this site. You will find resources to locate a doctor who is experienced in treating it and diagnosing it. Good luck.
I was bitten by a tick. 2 weeks later I developed this huge bullseye rash. I went to a Dr(my regular one was out of town). He didn’t test me for anything and gave me a script for doxycycline ( 10 days worth). Mean while I am starting to feel bad. I have 1 more day left of the antibiotic left. I live in Jonesboro. Can someone please give me a name of a good Lyme disease Dr to go to. I will travel if I have to prefer in AR though. Thanks! I also have pictures to document.
Go to the ‘Links’ section of this site and you will find the resources you need there.
Please email the names of any medical doctors or natural doctors in Arkansas that treat Lyme
Please refer to the section on this site for ‘Important Links’. It will take you to the Lyme Doctor referral site. You can go to ILADS page and get access.
I know I have rmsf and think I have Lyme but my Dr won’t take me seriously. He said Lyme disease does not exist in Arkansas. What am I supposed to do?
You need to go to the referral site and sign up. Please don’t delay. The site will put you in touch with a Lyme literate doctor near you, but you have to sign in/register first. Only takes a minute. I also suggest going to Lymenet.org and get some answers there.
LYME DOCTOR REFERRAL SITE:http://www.lymediseaseassociation.org/index.php/doctors
Fight for your rights! Research and find a Lyme doctor who will work with you. Look under the ‘links’ section on this site to get to the doctor referral site.
Yes! I’m suffering so much and when I told my Dr about having lyme, he said “don’t listen to Dr google” so what do i do?? I am seriously about to kill myself. I can not get help.
Wow. This is amazing to me. I lived in Arkansas and was bitten by a tick. I became very stiff and sore and had bad head aches and was always tired. I just ignored it and it went away. Three years latter after moving to Washington state I started to have extreme pain. My legs and hands went numb. I went to the doc he sent me to the emergency room because he thought I had had a stroke. After sitting in there for three hours and them not being able to find anything wrong I was told to find a neurologist. By the time I was able to get into see one I was almost paralyzed. I could not walk I could barely feed my self because my arms were so weak. And was having severe headaches and muscle twitching. no feeling in hands and feet. Yes the neurologist after all kinds of testing like being shocked ect. told me I had ALS and would be completely paralyzed in year and maybe had 2.50 years to live. After laying in bed for 2 weeks and fighting the depression I started reading about ALS and Lyme kept coming up. I remembered the tick bite from years earlier and went back to talk to my neurologist. At first he laughed at me when I got mad he set down and listened for which I will be forever thankful. He got on the CDC sight and read all about Lyme and called a few days later. He said he was 99 percent sure I had lime’s but did not know anyone who would treat me because it did not exist it Washington state. Anyway with a lot of searching I found a great doctor in Washington who agreed to help me. He also diagnosed me with bacterial meningitis . caused from the Lyme going so long with out being treated. He put me on antibiotics. It has taken almost two years of being on a few different kinds but I am almost back to a normal life. Had I given up I would have laid in bed and died. It is so stupid . it is a bacteria and antibiotics will almost always kill it if you take them long enough. So please do what you have to do to get someone to listen to you. You can get over this and yes it is real. I was never sick a day in my life until this. It does get worse before it gets better so don’t give up.
Our 3 daughters got bit by ticks in Lowell, AR in someone’s front yard in May. Within days, two of them had fevers and one was vomiting with a blistery rash. After taking them into a nearby walk-in clinic, they were treated for their tick bites with Amoxicillin for 3 weeks by the NP. She had instructed us to check with our normal pediatrician to be sure that was the right antibiotic for them. In about 10 days, the littlest daughter (7) showed up with what appeared to be a bruise around one of the bite sites on her toe. It looked purple and red and over the course of a couple days grew in size significantly. We now know this was the ER rash of Lyme Disease but not with a clear center like the pictures, instead it looked like a purple and red bruise but was not painful. It got bigger every day. We took our daughters in and our normal pediatrician asked to run the RMSF, Tularemia and Ehrlichiosis tests on the youngest because of her “bruising” and took the two girls on Amoxicillin off of it. They got 10 days of it, but we were told it wasn’t a good one for tick bites anyways. My husband then asked if the DR. would test the youngest daughter for Lyme and she said we don’t see that around here, but if it gives you peace of mind, she would. She then assured him, that the test would come back negative. It didn’t. By CDC standards it came back positive..2 IgM bands positive. From that point on things have been a blur. The head of the pediatric clinic ordered 10 days of doxy for the youngest daughter and we were asked to come into the clinic the next day to have the other two girls tested. By tested, they apparently meant belittled and made to feel stupid to want the same tests run on our other kids who had suffered tick bites at the same time. Again, we were told how unnecessary this was to put our kids through unneeded trauma…they assured us these tests would be negative. Except when the tests came back….they weren’t. The oldest daughter tested positive by CDC standards as well for Lyme Disease, and the middle one was equivocal.
You know to make a state endemic, you just need two positive tests…just two. I had two in that pediatric clinic room and they told me not only would they not be treating my oldest because she was not “symptomatic enough in a non-endemic state”, but that the 10 days of doxy for my littlest daughter would be all they would give me for her as well. Then we were instructed to go see infectious disease at ACH. The day after we left that pediatric clinic and I was told I didn’t need anymore Doxy because she had finished her 10 days..my youngest daughter woke up with an old tick bite from a month ago that had resurfaced with blisters. With much fighting, we got another 18 days of Doxycycline for her and her joint pain went away almost immediately upon getting back on it. The oldest one started have symptoms of extreme lethargy, joint pain in her feet and headaches along with dizziness and we are currently searching out of state for a specialist to treat her ASAP and recheck her sisters. I refuse to sit back and watch as my daughters lives get wrecked by such a treatable illness! Arkansas needs to FIGHT BACK for our health!!!
The rash you described above, the red bump that turned purple, as just like the bump that appeared on my arm about a month after the tick bites. I hope you find a doctor. Make sure to go to the Lyme doctor referral site and sign up so you can locate Lyme literate doctors near you.
I have been sick since 2008, took me 5 years to be diagnosed. I have a positive Lyme test done by my PCP, was given 2 weeks of antibiotics I asked to be referred to someone that could treat Lyme better. ( I had already done a lot of research and had brought some with me and had to beg to be tested for Lyme, so I knew it was complicated to treat especially since I had it for years before finding out. ) I was told that it would cure itself the rest of the way!! Wth??!?!! I was in the Bryant/Benton area of Arkansas. When I became sick. I found a doctor out of state.
I also had to find a doctor out of state. It’s criminal what the state is doing denying this illness. Very sad situation, but I’m glad you got help.
It’s a major problem in arkansas, I’m in little rock and know 20 people personally who have it. I have been told for 12 years by numerous doctors at uams etc it’s not in our state. Hopefully by the time my children are grown this will have changed. It’s very sad we are being let down in this state.
My son was diagnosed with Lyme’s in two days after I took him to a Family Practice physician. This was 18 years ago. He was treated with Amoxicillin for 2 weeks and an injection of Rocephin. I now wish he has been on Doxycycline for a month or longer. I still have his initial lab report which states positive for Lyme’s. Two weeks after that lab result, he had a followup lab which stated negative for Lyme’s on it. The report clearly says Lyme’s. I did not ask the doctor if his diagnosis had been reported to the Arkansas Department of Health, for documentation purposes. All the above is very disturbing to me that physicians now will not treat for Lyme’s. I, too, know a few other people who have had a positive diagnosis for Lyme’s and one with Rocky Mt. Spotted Fever. I feel like I should mail a copy of my son’s positive lab report to the Ark. State Health Department to prove to them that it is indeed a disease found in Arkansas. I live in Malvern, AR, in Hot Spring County.
Please allow me to delete my last name.
I was bitten by a tick in mid April. Soon after I started experiencing digestive problems that I suspected was gall bladder related, tenderness under my ribcage, nausea after eating, and stomach pain. Had an ultra sound, no gall stones, had a Hyda scan for gall bladder functionality, and an upper GI to rule out ulcers. My GI doctor could not find any thing. In September, I started having strange rashes on my eyelids, elbows, and buttocks. Fatigue, roaming joint pain, headaches, and insomnia quickly followed the rashes. In early October, a bullseye rash appeared around the tick bite, the bite had never healed! I immediately went to the doctor and was sent to have blood testing for RMSF, rheumatoid arthritis, auto immune disease. The test came back positive for RMSF and took doxy for 24 days. I asked for a referral to an infectious disease doctor and was sent to UAMS two months later. I was basically told that Lymes disease wasn’t in Arkansas and that they suspected STARI and Alpha Gal Allergy to mammalian meat. No tests, no blood work, only a referral to an immunologist for allergy testing. BTW, I am still waiting on that appt. I have done a lot of research on this and I quit eating all red meat and my digestive issues have improved. However, still have the joint pain and fatigue, and a weird tingling sensation (feels like an electrical current) in my face and legs mostly, and the tick bite won’t heal. I am beyond frustrated and it has taken a toll on my emotional well being. I don’t know what else to do. How could it just have been RMSF and not been detected from April to October without being fatal? My symptoms are closer to Lymes. Am I crazy?
No, you are not crazy! You have a tick borne disease, for sure. UAMS and AR Health Dept are currently collecting ticks to determine just what strain of borrelia bacteria we have in AR. There are over 100 strains of the bacteria in our country, alone. The fight for recognition in AR has been rough. They refuse to call it ‘Lyme’. Regardless, they are addressing it now, though they STILL downplay the seriousness of tick borne diseases and continue to deny it’s the original “Lyme”.
If you haven’t already done so, I urge you to go to the section on this site for Important Links. You should sign up for the Lyme doctor referral system. You will be able to search for qualified doctors from the site; doctors who have special training for treating it (not ID docs)
Kristin, I’m so sorry for your struggle. Please reach out to me at firstname.lastname@example.org. It sounds like you have been bit around the same time as our 3 girls were and I would love to find out more from you. One of our daughters had Lyme disease, Tularemia and RMSF and you can most definitely get all of these at the same time, along with life altering co-infections. I would love to help in any way I can as we have been in the same boat all year and it’s aggravating to know that something more is going on with you, but not getting the response you would expect from the medical community in Arkansas. Thanks for sharing your story!
I have been bitten by so many ticks throughout my life I couldn’t count them on both hands. All in Arkansas and California. Back in the early 2000’s I began to have all kinds of different symptoms. I heard so much about fibromyalgia and finally was diagnosed with it. After much research and reading about Lyme disease symptoms I was that I had it so I called igenex and had the testing done. It came back that I had only 4 of the 5 markers so I didn’t have it. One of the markers had a double xx.
I was sent to RA Drs, infectious disease Drs and a list of other. The infectious disease Drs laughed me off as a looney tune. 1 at UAMS and another for Arkansas infectious disease.
I donated blood one time and wouldn’t except it saying I had hep c. I saw a specialist and he said I’d been exposed to it but I am not a carrier. I told the ID Dr. And he put in his report that I cued my own hep c.
I could go on and on about the way I was treated until I found a land. I will not say his name but he took 1 look at the igenex lab results and immediately said I had Lyme disease. After more testing I have Rocky Mountain spotted fever and black legged deer tick fever. I was with him for 2 years and would still be going to him but I couldn’t afford to keep going because he couldn’t treat me how he felt it needed to be done. The CDC or health department had his hands tied because “there is no such thing as LYME DISEASE IN ARKANSAS ”
I’m still sick and struggle everyday! I would love to be a part of a study so we can get control over this God awful disease.
Joy, I’m so sorry you have been through so much!!! You are not alone!! There is something you could to help identify the strain of borrelia in Arkansas. UAMS is collecting ticks for a tick study! Go here and it will tell you what to do to submit samples.
Joy, we heard the same “There is no Lyme disease in Arkansas” report after our daughters tested positive by their own standards IN THIS STATE. It is possibly the most frustrating experience and I am deeply sorry you have found yourself in the middle of it. Our hope in pushing the “2 positive Lyme cases in Arkansas” forward was to start to see some momentum in the state in accepting Lyme here and to begin to work on fixing this problem together. However, we are seeing an opposite reaction and it seems that while we are hearing about symptomatic tick bites weekly, the temperature of the state is violently against Lyme being here. I am under the impression they are working overtime to find a way to make sure another person can’t prove we have Lyme here. Please feel free to reach out to me and the Arkansas Lyme Foundation. We are wanting to help! http://www.arklf.com or email@example.com
Thank you Alarie!
I’m suffering from lyme for years now and CANNOT get a DR 1 …none,nada,0 to test me for it!
I KNOW I had 2 ticks on my neck 2 years ago and I’ve been symptomatic ever since,all I’ve gotten from tens of thousands of dollars worth of their choices of testing is “You’re just cazy” Go see a shrink!
What are we supposed to do?
Where if anyplace can we go to get this diagnosis and some GD help?
Not been real thrilled with the medical here anyway so I’m sure lyme disease is the last thing they are thinking!
Wow. I realize the last comment is from 2017 but I feel it’s so important to keep SPEAKING OUT about the shameful, medical ‘treatment’, Lyme patients receive from the allopathic community. It is literally adding insult-to-injury. Reading these Lyme patients,experiences, I’m choking back tears & wondering how these good people are all doing, today. Beyond heart wrenching, I just couldn’t read them all. I’m sickened that people are suffering like this. Was bitten summer of 2017, took 3 weeks of amoxicillian and am now deemed, “treated’ by my allopath. CDC positive for Lyme but Never tested for any co infections. Now sporting a nasty rash om both hands/wrists & bottom of feet for past 2 months. Positive inflammation markers & ANA tests, came with Lyme diagnoses. (NEVER tested + before the Lyme). Been so sick for past 2 1/2 years & still have + ANA tests. Saw this new dr, twice & she’s already sending me to 3 specialists for 1)Steroidal spinal injections 2)rheumatologist3) local dermatologist who STILL believes in 2020 that “Lyme disease only exists in a tiny town in Conn.”! WTH!? The new dr insists no Lyme’s ‘treated’ & I now suddenly have ‘undetermined autoimmune disease’ . Yeah right. These drs will kill me if I listen to them. That I do know. History repeats itself as my dear grandmother was also diagnosed with autoimmune, we took her to the rheumatologist as ordered by her PCP. He put her on 100 mgs of Prednisone WITHOUT TAPER for months. Finally she ended up in the ICU, caught nosocomial pneumonia and died. The icu nurse literally told us that the dr had her on ‘a ridiculous dose of prednisone- she called it ‘an unheard of dosage’ It completely destroyed her entire immune system. We asked to speak to the rheumatologist & nurse replied, “He suddenly picked up & moved to California, this morning.” We were grief stricken & stunned beyond disbelief. This ‘doctor’ had literally abandoned his thriving practice and FLED to California, to avoid answering to his heartless, soul-lless, neglectful, ignorance & crimes. We must become our own physicians! We must help each other. How can those who’re so willfully ignorant, care for us? They can’t. Why do these ones hold a monopoly over health care in the US? We want functional doctors, Ayurvedic doctors, naturopaths, master herbalists, and natural remedies. Law prevents our freedoms over our own bodies. My body, my choice. Since I have no access to these natural practitioners, I choose to educate, and care for, myself.
Thank you so much for your story! Ne word must get out
I just found your site. I got covered in
seed ticks 10 years ago while trail riding. It took us awhile to get back to the truck so I could get them off of me. I was covered from my ankles to my shoulders. I went home and took a bleach bath which did not remove one of them and pulled everyone of them off. About a week later my Ex-husband and I both got sick with what we thought was the flu. Then he got up one morning and had a bullseye rash around his bellybutton. He went to the Dr. and they removed the tick and gave him a week of antibiotics. I couldn’t think clearly and was always so run down and then the depression. My head hurt so bad I couldn’t stand it and would sleep for days. I kept saying something is wrong. They diagnosed me with bi-polar syndrome. I kept getting worse. I finally went to St. Louis and was diagnosed with Lyme disease. The Dr. I went to said it is the great imposter. 2 weeks later I developed Morgellons. Morgellons is a type of Lyme also. So for the past 10 years I have fought. Don’t let any Dr. tell you it doesn’t exist. Find a good Integrative Medicine Dr. Your life is worth it. My struggle isn’t over but I am getting there. I have lesions all over my legs that are finally healing. My energy is starting to increase. You can get back to normal but you are always a carrier. With Dr’s not caring they better start worrying about blood tranfusions with Lyme being so prominent.
Thank you for your contribution to the Lyme Ignorance page! We are kindrid spirits in this fight.