Dear Government Officials:
I recently visited Washington DC for a rally in May, 2011 concerning a very serious issue. I’m writing to you as a concerned Arkansas resident who’s been in the trenches in the war against Lyme disease and appealing to you to please hear our voices. Since first contracting the illness in May of 2010, I’ve been in contact with many other Arkansas residents who are afflicted with the disease. Hundreds of individuals in the state are sick, including children, not to mention those who are misdiagnosed or dismissed as “mental patients”. This is not only a state-wide issue, but a national epidemic as well, with as many as 300,000 individuals affected last year. The serology testing for the disease is inaccurate and under great debate since diagnosis cannot be based on testing alone, as the CDC states it is a “clinical diagnosis”.
Here are my concerns. The state of Arkansas is not addressing the issue of Lyme Disease as a serious problem. According to the Arkansas Dept. of Health website, they have documented 23 cases of Lyme since 2004, which seems grossly under-reported. In addition, they did NOT report all the Lyme cases to the Center for Disease Control. The statistics on the CDC website show Arkansas reported only 1 case since 2004. Strangely enough, the Arkansas State Health Department website reports OTHER tick borne diseases like Ehrlichiosis and Rocky Mountain Spotted Fever in increasing and alarming numbers since 2004.
I’d like to share with you a comment left on Part 2 of my article “The Hushed Truth About Lyme Disease” ( http://hubpages.com/hub/Hushed-Truth-About-Lyme-Disease-My-Story-Part-2 )
“…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….”
This is just one example of reports from Arkansas residents. Our numbers are great, but the illness is not being acknowledged. According to one source, (a woman from Ashdown, AR with chronic Lyme), UMAS actually refused to treat her. I hear many stories such as this, not only in Arkansas, but other states as well. I’m imploring you as a government official to please recognize our plight and help us create an Arkansas task force to investigate the seriousness of this disease and give it the recognition it deserves to warn our residents that Lyme Disease is alive and well in Arkansas, despite being ignored, unreported, misdiagnosed, and concealed.
I’d like to remind you that this is a very serious disease that disables individuals if left untreated or misdiagnosed. Please research the subject with an objective outlook. We need your help and recognition.
Arklatex Lyme Disease Prevention & Support
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Comments on: "My Letter to Representatives In Arkansas" (43)
Lymes Disease is definitely a very serious disease, not just in the United States. In Canada, it is also under reported. When you can find a doctor to treat a person with Lymes, the doctor is so monitored that when he follows the prescribed treatment for the patient there is a good possibility of having his license removed. This just is not right.
I too have ran into this. I have dealt with this issue with my 3 year old daughter. Not only does UAMS deny this disease, Arkansas Children’s Hospital denies it too Neither hospital would test for it. I also have a letter from Arkansas Health Department that is signed stating “Arkansas has no Lyme”. We ended up at Lebonher in Memphis TN. They started immediate IV treatment but would only treat her for 30 days. She had symptoms for 4 months prior to the first treatment and underwent every test in the book except for Lyme .Arkansas Infectious Disease doctors WOULD NOT agree to test her for it. We ended up on 3 years of antibiotics with a doctor in Missouri. She has been off of antibiotics for a year now. I am very passionate about lyme awareness in Arkansas. I too will write a letter to the legislation. Such a sad disease if left untreated when all it takes is aggressive treatment in the first couple weeks. Doctors should be made aware of the symptoms ,if there is any possiblity someone could have it they should be put on the proper antibiotic immediatley. Like you said, it should be a clinial diagnosis AND CDC backs this up. We have so many undiagnosed cases with mental, heart, muscle & bone issues that are true cases of Lyme. I can not describe the helpless feeling I felt when I realized the faith I had placed in our medical profession had failed us. It almost cost our daughter her life and still may cost her symptoms the rest of her life since she was denied treatment at the beginning. If Missouri, Texas, Alabama & Tennessee admit they have Lyme and take it serious how can Arkansas border these states and continue to deny we have it. Thank you for your letter. I hope others will continue to speak out. UAMS & ACH are the two main research hospitals in Arkansas. If they continue NOT testing for it then Arkansas can continue to say we don’t have it, how can you report something you NEVER test for. We met with Dr Romero, head of ACH Infectious Disease and we ask him if he would test her….he said NO, Arkansas does not have Lyme. Also, an adult female that had received positive lyme tests from an out of state lab met with the head of Infectious Disease at UAMS, after reviewing the Lab results from a different lab he told her, “YOU DO NOT HAVE LYME…this lab company must not be reputable”…when she ask him to do his own test at UAMS he said “NO, Arkansas has no Lyme”. Our Doctor in Missouri said Lyme isn’t the correct name we should be using, we should be calling it by it’s bacteria name borrelliosis(not sure of spelling). He said Arkansas bacteria is the same form of “lyme” but is shaped a little different but has all the same symptoms & can have chronic symptoms like Lyme, he likes to call it “master’s or starry disease” instead of Lyme. Whatever we want to call it, it can be a crippling or fatal disease if left untreated.
Arkansas Department of Health sends Lyme disease specimens TO the CDC. How could they not be notified? You can’t be sure of the diagnosis unless you get a positive for the specific Lyme test. But, Arkansas has multiple tick borne diseases which are ALL treated with the same antibiotics as are used for Lyme. Anyone with clinical symptoms of any tickborne disease are treated with the same antibiotics.
Mr. Wilson: When you say the AR state health dept sends “Lyme disease Specimens” to the CDC, exactly what do you mean? The tick itself? Or the paper saying the LD test is ‘positive’? What I am saying here is that the medical clinicians are not sending in the proper documentation (positive test results) to the state health department when they get a positive result. I’ve been informed by individuals who said they reported their cases to AR dept of health. I instructed them to make sure their doctors send the positive test results to AR DH.
In order for the verified case to be counted as “confirmed” with the CDC, it must be a positive test according to their “surveillance criteria”, which the test was originally created for, NOT for diagnosis purposes. Clinicians aren’t informed of that, they treat it like it’s the only marker for the disease, when it’s not. The CDC states that Borrelia/Lyme is a Clinical Diagnosis. The current testing procedures for borreliosis is flawed and inaccurate. I have spoken to individuals who have the disease and still tested negative…..many, including myself. There are many many co-infections besides just Lyme/borreliosis but everyone calls it “Lyme”. Our Arkansas strain is referred to as Masters Disease or STARI. The bacteria is not exactly like the NE type, but a spirochete nonetheless.
I’ve leaned of some Md’s who don’t treat tick borne infections with the same antibiotic. These little bacteria devils are smart and wicked…..so maybe it takes a different ABX with some. I’m no microbiologist, for sure.
Regardless, prevention is the key and warning people that tick borne diseases, ALL of them, are dangerous is the focus of many support groups. Nobody wants to end up sick for months.
I’ll explain. You can’t do a Lyme disease test in a Dr.’s office. If you’ve got the symptoms of Lyme, RMSF, Tularemia, Eherlichia or STARI the Dr. will treat it with an antibiotic of a class that will kill any those organisms. But, before you can positively say which organism you’ve got, you have to do the specific test. For Lyme disease you send a serum sample to the CDC and they test it. That’s how they know that person in Arkansas has Lyme.
I can assure you that nobody on Earth can tell you which tick-borne disease you have unless they do the specific test with the blood serum.
But the Dr. (if he or she is competent) is not going to wait for a test result. If you have fever, headache, nausea, rash or no rash that started with a tick bite, he or she will prescribe an antibiotic of that type that will treat that infection. But don’t tell me you know somebody with Lyme that tested negative. Nobody, you me or anyone else knows that. In conclusion, if you had a tick bite and you got sick, call a doctor, ask them if they’re familiar with tick-borne disease. If they are, go see them.
i have trouble believing anyone sends samples to the CDC. They dont even recognize chronic Lyme. And YES you can have a negative reading and still have Lyme. Lyme hides in tissue, organs and cells and also goes through a dormant stage, so when you are being tested during those times you definitely can come back with a false negative reading. You have to be tested multiple times every six months. The CDc isnt HELPING us and neither are the Insurance companies because they would have all kinds of law suits on their hands.
You are so right, if a person has all the symptoms of any tick-borne disease a competent doctor should immediately prescribe the appropriate antibiotic at the onset of symptoms not wait for a test result. I wish more docs would do that, but unfortunately, (especially if the patient doesn’t recall a tick bite or have the rash just symptoms), a tick borne infection is not even considered & it goes undiagnosed, sometimes for months thinking it’s something else. By that time, the patient has worsened and takes longer to get well.
No doctor( that I know of) has ever sent a serum sample directly to the CDC for testing. I actually wish they would. Doctors i’m familiar with use LabCorp or Quest to perform the ELISA or the Western Blot. Or if it’s a specially trained ILADS doctor, they send the blood sample to a special lab in CA to perform the WB or tests for Babesia, Bartonella, I’m glad you informed me of that procedure. Why aren’t doctors sending blood samples to the CDC if this is protocol, I wonder?
You’ve given some good information here. With all due respect, I will share with you that there are patients who have presented with the bulls eye rash and test negative on their Western blots. It happens. Or some other rash. Mine was a round, red bump on my right arm that appeared 1 month after the tick bites, right after I started feeling so tired and strange. Nobody recognized it as associated with the tick bites. Maybe it was, maybe it wasn’t. There is no way to know for sure.
I appreciate your advice here: ” In conclusion, if you had a tick bite and you got sick, call a doctor, ask them if they’re familiar with tick-borne disease. If they are, go see them.” I just wish more MD’s could give us a “yes” answer to that.
I don’t know of ANY doctors sending a serum of to the CDC and it doesn’t seem that the CDC even offers that service. Doctors test via ELISA assay (which measures your allergic response) first, then if the titers are high enough they go on to test via Western Blot (which looks at antibodies being made specifically)…then the fun begins:) These are all done in local labs.
A reference lab can also test but they test using a polymerase chain reaction (PCR) test. This test can be useful directly after a bite or ill feeling as the other types depend on your allergic response to report postively and therefore are not great choices early on.
The problem comes in that if you don’t immediately make enough antibodies or your allergic reaction is not severe enough to get you to the doctor early on your chances of an easy ‘cure’ are lessened greatly. There is no question that if treated early on Lyme disease can be completely erradicated but the question remains… if you wait until you feel really bad (could be years) then how succesful is the treatment then? The jury is still out-
directly from CDC website:
How are cases reported to CDC?
As with most other reportable diseases, reporting requirements for Lyme disease are determined by state laws or regulations. In most states, Lyme disease cases are reported by licensed health care providers, diagnostic laboratories, or hospitals. States and the District of Columbia remove all personally identifiable information, then share their data with CDC, which compiles and publishes the information for the Nation. CDC has no way of linking this information back to the original patient.
CDC summarizes national surveillance data based on these reports, and publishes results in the CDC publication, the Morbidity Mortality Weekly Report. The latest summary was published in the MMWR Surveillance Summary for Lyme Disease–United States, 1992-2006.
The goal of Lyme disease surveillance is not to capture every case, but to systematically gather and analyze public health data in a way that enables public health officials to look for trends and take actions to reduce disease and improve public health.
Excellent contribution, Tiffany! Thank you very much for clarifying this so our other visitors can get a more accurate picture.
I too have never heard of any doc’s office sending blood work to the CDC. There are only a few labs or one, really, that my LLMD uses and it’s not Labcorp.
Mr. Wilson, I had to “lead” my pcp doc to a Lyme test and he told me I did not have LD, but that he’d do the test anyway…I have LD and even with a positive test he still told me I did not have LD. I sought out a new pcp who ran more tests and found out that I also have Rocky Mountain Spotted Fever!! So while the first doc told me I did not have LD, he didn’t even care that a) I did and b) what it could be if I didn’t.
The very least that AR docs should concede is that there is Borreliosis is AR and not be so quick to dismiss the symptoms and leave patients/people suffering and getting worse.
Jennifer, thank you for your response. I appreciate your input greatly, as it helps explain our plight. I’d like to point out that you actually HAD a test come up positive. Was it sent (by your PCP) to the AR Dept of Health so they could report to the CDC like protocol directs? What year did you have your positive test? None have been reported in AR lately, not one. Doctors are required to send the positive test result to AR DH who then, reports the positive to the CDC for addition to the national report. Or the labs should at least report.
My original pcp who ran the Lyme panel in June of 2011 that came back positive, recanted the original diagnosis…on paper to me, saying that I did NOT have LD. This leads me to believe that he either never sent anything in to the ARDH or the CDC or was pressured by the ARDH to recant so they didn’t have to report anything…who knows? My LLMD, when I asked why such a stigma around LD told my husband and me that when the first cases were reported in MO, in the 50’s or 60’s (can’t remember exactly) that one of the first things said by someone in the state government was “this will really hurt tourism”. Wow…money or the welfare of people, but what’s new there?
What’s funny is that I live in the Ozark National Forest, 30,000 acres around me and I’m in the woods most every day and am outside in my yard, every day…I’m just much more vigilant about checking not only myself, but my family members.
this is crazy to even suggest sending samples to the CDC, They dont even recognize chronic Lyme in the first place. thats why we chronic lyme patients have issues when put on antibiotics long term. There are only special labs to get your blood drawn for Lyme and its not Labcorp and then there are only a few laboratories that test only for tick born diseases. Igenix in California being the main one on the west coast. And there is a limited time to get those results to the lab or they will be useless.
Jennifer you are right. there are only certain labs to go to be tested for Lyme and then sent to a Laboratory that only deals with tick born diseases. After years of trying to find out what was wrong with me and multiple drs. no one in Oregon even suggested it might be Lyme. And even if the Drs. “humor you” and do send off blood work, it often goes to a lab back East and the samples are ruined by that time. Or they dont test for enough bands for the disease. Oregon ALSO doesnt believe they have Lyme which is where i got mine and the two major insurance companies there, wont let the drs. treat patients with Lyme. I learned that by looking up “reported cases of Lyme Disease in Bend Oregon” and it said its known for the worst state to be treated for Lyme. Glad i moved to Arizona but this is a State that doesnt allow treatment for Lyme, so i go five and a half hours to San Diego every three months.
It sounds as if your PCP is not ……..well, you know what I mean. Isn’t that interesting. Now why would he deny borreliosis when he has the positive in his hand? I would say it opens the door to suspicion and investigation.
Jennifer, I’ve heard a couple of other comments strangely similar to yours. From different people. Which makes me think that AR, for the sake of tourism, doesn’t want to report the cases. I pray that is not true.
I’m told by an official of the health department that he is appalled that anyone at state level would even think of withholding information from the public like this. He personally told me to tell people who have positive tests to make sure their doctor send them the positive test so it will be properly reported to the CDC.
Wonder if this is being done……I don’t have enough stamps to send to every primary physician in the state to instruct them on reporting methods.
Glad you shared this bit of info.
I went to see a local ID who also told me I did not have LD, and who also, neglected to do further testing…just told me that if I started to feel unwell to come back and see him. I ended up writing him a letter and telling him that I felt he had not done his job well and that if my husband messed up on a job, that he would make it right…I sent him a check for $50 and was surprised to receive a letter back. He was disappointed that I felt that he had not given me adequate care, then proceeded to explain how LD is tested…blah, blah, blah. It was only after I went to a more sympathetic pcp that I had further blood work and the RMSF diagnosis…this was after 2 months on dox.
I’m in a good place right now and try to educate those around me and have actually helped 2 friends who had their spouses tested who both came back positive for RMSF and they both told me that they wouldn’t have thought to have them tested for any tick illnesses. My question is, why are doctors NOT testing for them routinely when presented with the symptoms???
Jennifer, they just aren’t being informed to be made extremely aware. They can only go by the book for treating this, and, if insightful enough, will proceed and investigate.
I am a Registered Nurse, live in Maumelle and was diagnosed with Lyme Disease in Feb. 2012 after 14 long months seeking a correct diagnosis. I also looked at the Arkansas State Health records regarding reported cases of Lyme Disease and scratched my head at why after 2008 there have been no reported cases. Yes, prior to this time there had been. I find this odd.
I spoke with a gentlement at the health department and asked him to offer an explaination as to “why” there have been no reported cases since 08. Did the ticks just pack their bags and decide the scenery here in Arkansas was not good enough? He told me that they ONLY report “new” Lyme cases.
I asked him to define “new” and he said that the patient would have to present with a Bulls Eye Rash and test CDC positive on ELISA and Western Blot. He went on to say that even IF the person had a Bulls Eye Rash in the past but later went on to test postive for LD, that that would NOT qualify them. It has to be ALL the criteria and ALL at the same time. Geesh, so much ignorance, so much corruption.
I have learned that IGenex lab will test ticks for Borellia Burgdorferi. It costs $65 dollars to test up to 20 ticks. I am on a mission………..I will keep searching and collecting ticks sending in 20 at a time until I get a positive test for the organism!
Then, I will be making some key appointments with key political and news figures in the state! I am also trying to get a local television story. We all have to be activists!
I have a letter from Arkansas Health Department that states “Arkansas has not Lyme”. The reason Arkansas has no reported cases of Lyme is because infectious disease doctors in Arkansas REFUSE to test for it. We saw Dr Romero, head of Arkansas Childrens Infectious Disease & he WOULD NOT tes our daugher.
We also have a person that went to Infectious Disease at UAMS with a positive Lyme test lab test & the Infectious Disease Dr said he did not trust the lab that was used, the patient ask him to do his own testing & he REFUSED.
If our two research hospitals will not test for this bacteri there never will be any reported cases in Arkansas. It’s such a shame our loved ones are suffering & our medical professionals are turning their back on us. Awareness is so important in this crippling disease.
This is an appalling shame. The only way to fight the “system” is to continue our outreach and activism. It’s an outrageous, political mess when a medical bureaucracy refuses to consider the possibilities of an epidemic that doesn’t lay within the boundaries of their narrow “safe box”. The saddest part is that regular PCP’s and MD’s don’t know that the test for LD was never developed for diagnostic purposes, but for surveillance. They can’t help it if they haven’t been informed……
I’d hang on to that letter, for sure. To be denied by one of the top research hospitals in the country is shocking. Not to mention the fact the AR Children’s Hospital is considered the top hospital for children in the US. How many kids have slipped under the radar with Master’s Disease (Borrelia) without the proper diagnosis?
Great reply, Dianna. I think we know what our next step needs to be.
Yes, we really need to ban together & go to our State level. Awareness for now is so important to the next victims of this bacteria. Seems each year more & more of our people here in Arkansas are becoming ill, we need our research hospitals & state health Department to be aggressive in treatment at the beginning stages.
Would love to be included in any group trips to Little Rock to start the awareness process from the top. Awareness in our papers & on the news for newly infected people is so important right now…so sad the innocent victims that will be going to their doctors & hospitals to put faith &
trust in them to diagnose & treat them when they will be sent home thinking they only have a virus to wake up six months later in a fight for their life & finances.
I really want this to happen, as you suggest: Trip to Little Rock to raise awareness. The only way to do that is for someone, in Little Rock preferably, to help arrange this meeting. I believe that a peaceful demonstration outside the AR Health Dept would suffice, as well as letters to the governor, senators and congressmen….each telling the story as you have told here.
If each person here would take what they have shared here (about the unwillingness of AR hospitals to help & lack of borrelia knowledge) and send to state officials, it would help greatly. What’s important here are the people who are sick, as Diana says.
Remember, anyone who wishes to arrange a peaceful demonstration must get a permit from the city.
What about going to the head of the State Health Department with a few of us & have a face to face peaceful concerned discussion? I may can set up an appointment. I also thought about going to the administrator of Arkansas Childrens Hospital & Administrator of UAMS just to see if they are aware of the lack of knowledge or their doctor’s unwillingness to look at or study this bacteria.
In my mind I just don’t think the administration is aware of what is going on. IF we can meet with them & then still feel like Arkansas is sweeping it under the rug then I think the next step is our state representatives & media coverage??
Communication is the key, I just think this is such a complicated bacteria that no one in the medical profession in Arkansas wants the challenge of looking at it. My experience with this bacteria & the medical profession has lead me to believe all the money given & raised for research for cancer & other diseases is not being spent on the research of existing sick people.
Not one of the specialist we were sent to tried to figure out what was wrong since the blood work did not reveal a virus or something that didn’t show up in a standard blood test. They didn’t go further & wasn’t concerned. When ask what do we do next the Infectious Disease said “I’m not with her on a daily basis so I can’t tell you what I would do”
He offered nothing nor any testing to see what is going on…he just said it couldn’t be lyme bacteria & hopefully as time goes by she will improve. I would think if you have children & adults having symptoms & no obvious answers these are the people you want to research to do extensive testing.
Two of the doctors said, some diseases takes time to surface, give it time & eventually her body will tell us what is wrong….what about trying to find out now while we can cure it insead of later when it has developed into “cancer” or some other disease.
The research needs to start with our sick people with no diagnoses instead on our dead bodies after the fact….just sad the process I’ve seen & lack of passion in the medical profession.
Don’t get me wrong there are some very good, passionate doctors out there but the ones we ran into in the research field was more defensive than helpful for us. I may call & see if I can get some appointmenst set up all on the same day, if so I’ll post the date & see if anyone can join with me.
I live in Maumelle and have been ill for approx 5 years and have been diagnosed with everything under the sun from Fibromyalgia to being depressed. I am depressed because I got sick and can no longer live a normal life. I used to work in my yard and garden all of the time- there is no doubt I could’ve been exposed to Lyme’s Disease. I recall a few bites before I got real sick but I never thought about a “tick” bite causing me to be so sick. I tested positive to the Lyme antibody but negative to the Western Blot. I would like to contact you Tracy G for support.
Brittany, I’ve sent you a personal email with Tracy’s contact info. God bless you, honey, please don’t give up. Get to a Lyme Literate doctor as soon as possible. Use the links from this site to find out any information you need.
I had a long talk with Britanny, because Linda was not feeling up to it.
I recommended Dr. *********, Dr. ******** and Dr. ***** I also gave her some of our gluten-free and juicing recipes, which could help to build her strength. She is a very sick young lady.
Response to Tracy:
I pray you are getting better now. I’m sorry you got sick.
Tracy, thank you for your zealous spirit!! Wow. Within the past 3 months I’ve had more comments from Arkansans about this. I believe he (AR health dept.) is mistaken saying the patient HAS to present with the bullseye rash. We need to check into that, like find out what the criteria for the CDC is.
I’m glad you are collecting ticks!! It only costs $65? I think we will go on a mission here in SW Arkansas and do the same thing. Tracy, we need to talk. You are a trooper!!! Contact me through the site here at email@example.com.
My wife has Lyme. We live in Little Rock, but she had to go out of state for diagnosis eight years ago. UAMS refused to even test her. (The documented horror stories about UAMS and its refusal to acknowledge or accept a diagnosis of Lyme in Arkansas are lengthy and legendary. It is a passive form of malpractice.)
Our daughter was diagnosed with Lyme in December 2010. We suspect it was passed from mother to child in the womb. We also believe that is how my wife was infected. My wife’s mother died without having her illness properly diagnosed.
There is one dr. in LR who became involved in the ‘movement’ when his wife and their six children were all diagnosed with Lyme within the past year. (He has also been diagnosed with Lyne. Yes, is can be sexually transmitted.) After researching Lyme and reviewing files of several patients with chronic illnesses (but each without a satisfactory diagnosis), he had some of them properly tested for Lyme. (By the way, Igenex is the only lab to use.) More than 150 of the tests came back positive. He is going for his Lyme literate certification this summer and after that will hopefully be reporting his findings from a more creditable forum. A glimmer of hope.
This is as much a political battle as it is a medical battle. However, there is very little (if any) support from the traditional medical community.
Bob, thank you for posting this important information. We need to pray for this Little Rock doctor. Pray for his protection from biased medical boards who want to stifle the truth. Every post made to this site is a part of our evidence and fight. We are growing, our voices are getting louder. This epidemic must be addressed and accepted by all.
I recently tested positive for Lyme and RMSF. I got a call from the AR dept of Health and was asked questions about the RMSF. When I asked if they were going to ask me about Lyme I was told “We don’t collect statistics on Lyme disease. The kinds of ticks we have in AR don’t carry Lyme.” My Lyme test was through IgeneX.
I drove by the AR Dept of Health the other day and saw that they were getting another load of sand so they can keep their heads buried.
Anne, thank you for commenting. That’s appalling. But not surprising, considering the narrow mind they convey about tick borne diseases. My suggestion to you is to forward this message, or write a letter to the governors office, Arkansas senators and representatives. That’s how I got response. Seriously, if enough people will scream loud enough, somebody may listen. They are required to collect statistics on LD. This is baloney and makes me angry. Please send a letter to the state. This is not only negligent, it’s criminal.
I was diagnosed by a physician in Texas after taking my sick self back there following a tick bite with the standard ring around it. Later the Arkansas physician I’d seen while home on the break when I picked up the tick (in Nevada County) denied it could possibly be Lyme. That was 1986. Today I’m considering further testing as I am diagnose with Fibromyalgia and some symptoms make me think it’s Lyme.
No doubt about it: It’s Lyme, NOT fibromyalgia. Anyone presenting with a bulls eye rash is definitive for LD (according to CDC) It’s a shame the doctor didn’t know that. I pray you will check the links from this site and find a doctor who is trained to treat Lyme. At this point, over 20 years later, the standard 2-4 weeks of antibiotic won’t scratch the surface of the disease. I hope you can research a bit more and get the answers you need.
Tammy, Bulls Eye rash is all that is needed for a definative diagnosis of Lyme Disease. So unfortunate physicians do not know this. Feel free to email me if you would like a referral to a physician in Arkansas who treats Lyme.
I just got off the phone with Health Dept. in Little Rock you got it no Lyme in Arkansas. I was diagnosed in 2006 then again 2 months ago. What the H…! Is going on. I had to go all the way to California to get diagnosed. I now know there is a Dr in Mo that treats it but I love and trust my Dr. the health office told me it was a false+. it is just amazing that the Lyme ticks are stopping at the state line. I know of 3 wild life officers in Ar that have been diagnosed with Lyme. Sure are a lot of false+ out there.
I’m appalled, but not surprised. How utterly ignorant. I believe it’s time for a full fledged investigation into the practices of reporting in the Arkansas Health Department. I’m tired of the denial, the lies, and the blatant disregard of the repeated attempts to report verified cases of this disease. What makes this, in my opinion, near criminal, is the fact that they report all other tick borne diseases specifically omitting this disease has got to stop. If everyone who has had this same experience will forward a letter or email to our state headquarters, meaning the Capitol & all it’s representatives, we might get some attention. In the meantime, sitting back and doing nothing will not change anything.
Anyone here– I found a bullseye on our 21-month old exactly where I removed a tick a little less than two weeks ago. It’s in his hair, and so I don’t know how long it’s been there–I was just fortunate enough to find it last night while giving him a bath. He is not (yet) exhibiting any symptoms of illness. We have a dr. appt. today, but I feel very concerned reading this message board and many others–particularly after my co-worker told me this morning that his daughter was diagnosed with Lyme (per an Arkansas doctor) several years ago–but when I went on the Arkansas Health Dpt. page, it specifically said there is none in this state. Does anyone have any recommendations on how I should proceed– particularly if I am not satisfied with my dr. appointment today? I realize this is an older thread, but the people here seem very committed and concerned about this topic and maybe someone is still reading. I feel I must be as proactive as possible with such a young child.
Thanks so much–
Thank you for visiting our website. I pray your little one will be well. Great that you are taking him to the doctor today! Any bulls eye rash needs attention. You are doing the right thing.
If you go to the Lyme Disease Association website, you will find a lot more information plus a doctor referral link. We don’t give medical advice, but we can steer you in the right direction. http://www.lymediseaseassociation.org/
If you will look under the “links” section here on our site, it will direct you to other resources. You don’t say what part of Arkansas you are from, but it would be great if you could update us on the progress of your 2 year old. We care!
Arkiehinny, you are so kind to respond. We live south of Fayetteville, but the tick came from just outside of Mountain Home, which is where I grew up and where we were visiting 2 weeks ago. Thank you for referring me to the website–I will do some reading there.
The doctor examined the bullseye and said there was a very good chance that he has Lyme Disease. The doctor elected not to run tests because he said they were often unconclusive–but our child is being treated as though there is a positive diagnosis. He is to take amoxicyllin (sp?) 3 times daily for 14 days. We are instructed to bring him back when/if flu-like symptoms begin.
Having grown up in the country, I was bitten by ticks so often when younger. It was an aggravation, but nothing more. This just blows me away–baby’s first tick bite–and this! I am very troubled that although the official state position appears to be that Lyme Disease does not exist in here, my doctor (in Arkansas) did not look particularly surprised that my child may have it…
Erika, Glad you responded. If a person presents with a bulls eye rash, it is definitive for Lyme. That, in itself, is the marker. Did you take a picture of it? It would be a good idea because that is more evidence for AR residents that the disease exists here. I’ve been saving photos for 2 years, if I can get them.
The Northwest portion of AR is endemic to tick borne diseases. I want you to read this article http://donotfear.hubpages.com/hub/Lyme-Disease-Hidden-Epidemic-of-Arkansas. It’s easy to understand and will give you some answers (or speculation) about the AR denial. The fact is, ALL the southern states are like this. From what I understand, the CDC gives the states the power to decide if they report or not. My issue is ‘why the omission of this disease?’ It really raises a red flag.
I really hope you will get your little one to a Lyme literate doctor. It’s good he’s on the antibiotics, but time after time, I hear stories from people who either had the bulls eye or got physically sick after the tick bite, took the “standard dose” of 2-4 weeks of antibiotics, then were still sick at the end of the treatment or got sick later (sometimes months or years later).
The Lyme literate doctors have special training from ILADS (International Lyme & Associated Disease Society). This organization has spent years studying and fighting the “system” to get the disease recognized for what it really is. There is so much information out there…..it would help if you go to the “links” section here. If I didn’t believe so strongly about this controversy, I wouldn’t be here. Keep us posted!
Hello Erika, so glad that your little one has been started on antibiotics. I live in Little Rock and went down the long and painful path to get properly diagnosed with LD. I am a registered nurse and have learned a great deal about LD over my 2.5 year battle. I am also happy to tell you that I consider myself over the dz and back to good health for a year now!!! I really like sharing this as it gives people hope that you can fight and beat this horrible dz. I am more than willing to answer any questions you may have the best I can. Please feel free to email me. Tracy
I know this is womebody please help me!!!!!! please teelll me how to get diagnosed with lyme…… have been tested twice 8 years apart both times told I and rmsf or had it at sometime but I have never had the disease. I”ve known since having pericarditis and never recovering that Lyme is the cause. please help…..
Go to the Doctor Referral site and get with a qualified Lyme Literate doctor. Go here: