What is Lyme Disease?
A Directory to Tick Borne Information
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I was bitten (with knowledge) in June 1982 the summer before my senior year in high school, and have struggled ever since. Officially diagnosed in March 2016, and being treated currently by a LLMD in Redwood City, CA. “By the grace of God”, I am able to keep going daily, and I am improving month to month.
Became ill in Denver 1987. Diagnosed 2013. Now in Jackson county MI. Still sick in 2016. No support group near me. No family – I am isolated. Need support here in this area.
Facebook groups are a great form of support. A lot of us can’t or don’t get out much. At least that way we do have some contact with others. You don’t have to just be a member of a group in your state. Keep hunting till you find a good active group. <>
Lyme is in all fifty states and Europe. Ticks do not know to stop at the borders.
For those uninformed, do your research. It’s getting more prevalent all the time.
I believe if you are diagnosed late, it’s chronic. You never get rid of it. I thought I did for several years, but it came back with a vengence. You manage it, like MS. It hides in Biofilms.
In May 1992, while living in LD “Ground Zero” a/k/a The Hudson Valley, New York, I developed the ‘flu’, swollen gland in groin, knee pain, severe headache, blurred vision, intermittent fever, and lost 5% of my body weight in two weeks. First doctor said swollen gland was from ‘shaving legs’. Second doctor said my hair looked nice, but 99.7 for three weeks is not a fever, and the knee pain was from prior meniscectomy. Then, my girlfriend physician, told me to pull down my pants and look at my private parts. Sure enough, I had an 8″ bullseye rash right in the middle of my backside. Hooray! Two titres were off the charts: all positive results on every test. After taking two antibiotics concurrently for six weeks, I felt all better for a few months. Then, it started: autoimmune thyroiditis came and went. Eight years later, diagnosed with triple-negative breast cancer. Am saying all this to say: had four months of the ultimate antibiotic, Adriamycin, as chemotherapy, which is supposed to kill everything that moves or divides. I now live 1500 miles from Dutchess County, have never been bitten by a tick again, but still have inflammatory symptoms which I will never be able to tell if they are from the cancer treatment or the Lyme. But this remains a truth: in one’s life, there is ‘before’ Lyme, and ‘after’. I have vague memories of what it is like to wake up in the morning and be filled with joy for the day to come; memories of being able to move freely. Memories of feeling the same each day as opposed to being on a physical pain roller coaster. Never have I been able to recover my pre-Lyme life, to make plans for travel, or socializing, and now I will pay with sore fingers for all this typing, but know many others are worse off. Please warn everyone you know never to walk across a lawn again. It isn’t worth the risk.
Dorothy Romano, Thank you for you post here. I know it’s been more than a year, since you posted. I hope you are still here. I too, was just diagnosed with triple negative breast cancer. One of many post-lyme infection diagnosis. Also parkinson’s. I believe the tnbc was caused by lyme. Particularly, ehrlichia. Would love to discuss, and find someone to treat me.
Hope youre still here, though I’d love to hear from anyone on this matter.
While growing up in a small town in SW Missouri (1977, at the age of 10), I became severely ill. Hospitalized for two weeks, with 105 degree temperatures, delirium and flu-like symptoms. Treated with penicillin (the go-to antibiotic at the time) for what Drs thought to have been a brown recluse spider bite. I was sick all through summer vacation that year, and continued to be constantly sick, with “mono”, the flu, pneumonia, etc., throughout my remaining school years. Many prescriptions of antibiotics to treat my various unknown infections, seemed to help me through, symptoms would subside, and I would push forward. The one constant, was the agonizing bone pain in my legs down to my toes, my arms and fingers. I would cry myself to sleep every night, and my poor Mother (who was a medical assistant and worked the night shift at the hospital, where I was a frequent patient) would lather me up with Ben-Gay and give me a crushed aspirin with sugar, each night before she left for work. Many Drs visits, all to no avail, as we were told the pain was simply growing pains, and a result of my vigorous sports activities. Determined and strong willed, I continued to push myself, was an extremely active teen, and a college athelete. I had to take two medical sabbaticals from college, due to severe bouts of “mono” and eventually had to drop out of college all together, as my health spiraled downward from the stress of trying to go to school and work full time. I was able to, once again, push myself through, and was a competitive runner through my 20’s, while continuing my professional career. I would still have to rest a great deal on the weekends, and a simple cold would knock me down, but another round of antibiotics to treat my “respiratory infection” would help me get me back up in my feet again. Constant ups and downs of my health continued, numerous prescriptions for antibiotics to treat various “infections”, working 50+ hrs/week in a high stress position, trying to stay fit and be active, all while also battling endometriosis and undergoing 9 surgeries through my 20’s-early 30’s. But by 1999, my health was deteriorating, I was losing weight, fatigue was making it almost impossible to get out of bed to go to work, and in Oct., I came down with “the flu”. Sufferring a severe relapse, I was completely bedridden by Dec., weighing only 85lbs (I was 5”8″ and used to be strong and athletic). Too many ER visits (I wish to forget), countless doctor appts with specialists after specialists, every possible blood test and diagnostic test, and the looming fear I was dying, and no one could help or figure out why! Unable to function, I was forced to take a medical leave from work, and by Mar 2000, I resign from my position, as a Practice Administrator (a position I had worked quit hard to achieve), of a successful and growing medical practice (insert irony here), and become completely dependent upon others to take care of me. I was finally diagnosed with Lyme Disease and Bartonella, two years later, in 2002, by an infectious disease physician in Kansas Ciry, MO, who never gave up on me! Thousands of dollars later, more than I care to summize, my battle continues, and I am currently being treated by an LLMD from Seattle, WA, for Lyme and Babesia. I am still bedridden most days, and this Lyme journey has been a long one, but I am hopeful for renewed health. My goal is to be strong and active once again – by my 50th bday! Thank you for letting me share my story.
what a great idea. this map. sadly, the US is almost completely covered. and look at europe. wonder if plum island being between the 2 has any connection. ??
ps – nikki submitted her name to be added, but she’s not chronic (thanks to dr j) so not sure if she should be added to the map. but she’s proof of congenital lyme.
In 1993 at the happy healthy age of 37 I was infected with Lyme in PA because I had a perfect huge bulls eye rash on my left thigh. Sadly, I knew nothing about these diseases then despite being a RN in the OR. I had symptoms very soon after I saw that rash. Severe depression and anxiety out of the blue. But we were moving again due to my husband’s corporate job up to Long Valley NJ and soon after the move our then 8 year old daughter became very ill. Excruciating pressure headaches, knee pain and profund fatigue.I had to save her life!! My husband and I took her to 22 Dr’s. Finally we found a wonderful pediatric neurologist who told us, “I believe your daughter has Lyme disease and I’d like to admit her to the hospital and start her on IV antibiotics”. YES!!! When?? Our local pediatrician wouldn’t agree to work for this angel Dr who saved our daughter’s life unless a spinal tap was done. We agreed. The pressure in our daughter’s brain was extremely high. She had pseudo-tumor cerebri. After being treated with IV antibiotics she herxed badly. She was sent home a week later to continue IV antibiotics at home followed by oral antibiotics for a long time. One day she said “Mommy! My headache is gone!” We cried with joy! Soon after I crashed to hell. Intractable neuritic pain seared through many of my cranial nerves, overwhelming exhaustion came and so did the horrendous pressure headaches with nausea/vomiting. My left side began to weaken and numbness appeared throughout my body. Despite what we went through with our daughter, I too had to see many Dr’s who actually did sinus surgery, a TMJ arthroscopy, I had stellate ganglion nerve blocks, tubes put in my ears and finally a dentist did many root canal surgeries followed by the extraction of all my upper teeth. NONE of these procedures were necessary nor did they help. Before you judge me, remember I had unbearable, suicidal level neuritic pain 24/7 in my teeth, gums, roof of mouth, throat, across my head, eye, ear and brachial plexus. I was desperate. Finally I was diagnosed with Lyme disease alone and found an amazing neurologist whose specialty was pain and palliative care at a major medical center in Phila PA. At last I had relief from the worst pain one can ever imagine.I had Bells Palsy too. Several years later I was diagnosed with several other co-infections by a wonderful well known LLMD! I finally was treated for everything including using IV antibiotics several times for many months at a time and then oral antibiotics, antimalarial meds for babesiosis, a month of HBOT twice a day etc. Our other daughter also began to have many neurological symptoms and she too was diagnosed with Lyme disease. Her Western Blot done by Igenex was highly positive. Even “CDC” positive. She was so ill she also needed IV antibiotics. Then, my husband joined us becoming very ill as well. Lyme disease-again and babesiosis microti. IV antibiotics-again. Our kitchen table looked like an ICU. Both daughters for the most part have done well. One became very ill again after the loss of her 5 month pregnancy. They both regularly see wonderful LLMD’S and are very aware of any sign of symptoms. Two years ago our then 2 year old precious grandson became ill overnight. He cried and couldn’t even walk towards our daughter, his Mom due to severe knee pain and had a fever and a “flu like” illness. A NJ hospital talked IDSA all the way and never diagnosed him correctly. By a miracle I got him into see Dr J. Yes! Lyme disease again. He’s doing very well! Today I continue to see a well known LLMD who never gives up! I contracted babesiosis duncani following a total abdominal hysterectomy 13 years ago. I began to bleed heavily post op so had to be taken back to the OR to repair the bleeding and needed several blood transfusions. Profuse sweats and fevers began a month after the transfusions. I know I would have died if not for the life saving care I’ve been given by two compassionate and extremely competent LLMD’S. I’ve been to the ER several times with episodes of “aeseptic meningitis”. Horrendous pressure head and neck with nausea/vomiting. Nothing I had touched this pain so I’ve been put on strong IV pain meds and waited until the pain hopefully subsided.
I’ve also had vegetations found in my aortic valve after tests were done due to a heart murmur I had. I had to stay in a hospital for the first month on 3 different IV meds followed by a second month in a rehab center where I completed the 2 month of IV treatment. I’m very lucky. Repeat tests showed my aortic valve no longer had the vegetations. No valve replacement done!
Finally, I started a Lyme disease support group in Long Valley NJ many years ago when we lived there. Every meeting was packed with people looking for help with Lyme disease.
I continue to educate and support people dealing with Lyme disease and other co-infections. I will continue to do all I can for this very important and serious epidemic that causes so much pain and suffering until the day I die.
Despite having the best PPO health insurance through my husband’s corporate job when he worked, all our money was spent to pay for treatment since IV treatment , especially extended IV treatment was always denied.
We need more research, accurate testing and treatment options. The IDSA guidlines must be changed. Countless people are being misdiagnosed or labeled with a “syndrome”or worst of all, “it’s in your head”. A psychiatric disorder.
Thank-you for reading my long comments here. None of us asks to become infected. It isn’t our fault. But every facet of our lives is changed if we have chronic Lyme disease. Let alone all the other diseases that can be contracted with just one bite.
I wish all of you healing and much love in your life.
For those of you who are even thinking of giving up. Please don’t!
In my comments that were just posted I said I was infected in 1993. NO!!!!!
I was infected in 1987 at age 37. Diagnosed with only Lyme in 1993, SIX years after I was infected!
I live in North Carlolina. Haven’t been able to recieve treatment since we moved here in 09. I was bitten in Aug of 94 while on vacation in Ky. I carried the tick home in the back bend of my knee and didn’t realize it. Once home in Ohio I spotted it while shaving my legs and removed it. Watched the area for the rash but never got it so simply forgot about it. I never thought that all of the fevers and flu type things that kept hitting me in the next years, the increased probelms with what once was a extremeley well maintained very rare epilepsy episodes. The changes kept coming in the forms of sleep issues, concentration, muscle spasms, memory problems, speech, word recall, unable to do math, balance issues, tired and having doctors tell me through it all it was just all in my head or I was 40 and going through changes, that I had MS, ALS, Parkinsons, or Fibro. I was lucky enough to find a neurologist that believed in lyme and listened when my spinal came back negative for MS when I showed him an article about a man that was misdiagnoised & treated for 10yrs for MS when all that time it was Lyme!! He ran a Lyme teeter and it was off the charts…off for another spinal and it was postive….in my spinal fluid. So it had been in my system for 13yrs. My damage I am told is pretty much to far gone but I am sharing so that people can learn and the medical community will please listen.
I live in Prince George BC Canada, I have been tested positive by Igenex Lab (western blot & PCR) twice, one year apart 2013, and 2014. I had the erythmia migrans and was very ill in 1993, was diagnosed with severe B6 deficiency, prednisone was given to help clear the rash. I have had two main spirals since. The first around 2006 was diagnosed as possible manic depression, bypolar, treated with pharma drugs. This was successful in getting me healthy enough to go back to work after almost 2 years, although still reduced mental capacity especially diminishing recollection and organizational skills, resulting in reduced work capabilities realizing now in hindsite that I also had a multiple wrist fracture which required antibiotics every 6 mos when I got my dental work done( because of a metal plate in my wrist) . Then almost 2 years ago it happened again, relapse, reinfection?, where my motor functions, speech, memory, cognitive accuracy, joints, spine and head have been effected significantly. I had now been void of any possible recreational infuences for over 5 years and no longer took prescriptions either, and had not gone for dental cleaning for about 2 years not requiring any immediate work. So thinking I may have dementia, alzheimer’s I researched and uncovered Lyme as a possible answer when I found a picture of the rash I had years before, and had testing done, Elisa in Canada, which came back non responsive, I was given 2 week doxycycline, which I helped but for our physicians guidelines no further testing would be done here, and when I recieved my Igenex results, I started a program from a specialist in Calgary AB similar to the Cowden Protocol. I am still not back to what I would call healthy and may never be, I am however determined to go back to work, come what may. I have also resumed my dental schedule and am getting silver/mercury fillings replaced as well, this should all help according to my LL specialist.
The doctors shun the fact that Lyme disease exists here in Canada and I specialist said “if I was given two weeks antibotics I should be cured.” In 2013 my cat was tested, diagnosed positive and treated with 30 days of Doxycycline by my vet, before my testing even came back, and she was born and raised here.
I don’t know if this will be helpful to anyone, I hope so. Keep the faith, where there is a will there is a way.
Strive to survive!
I live in Ohio I have been diagnosed with fibromyalgia, chronic fatigue, auto immune disease, ms, an lupus then after years I am diagnosed chronic neurological lyme disease they say it has reached my central nervous system an nothing else the CDC can do. My symptoms will not go away. May all that suffer from this wicked disease keep faith ,there is always hope..
Dear Lord Jesus the Son and Father and Mother, and calling all Angels!
Plz help all these Familes that the evil ones have refused to, In Jesus’ Name i pray, Amen! TY Jesus <3
I have had lyme disease 4 mo. now. I got bit in Kansas City. I’m now in north central Iowa and no doctor around here knows about lyme or even what a llmd is, let alone a llnd. I was only given 10 days of abx. I am now on my own for treatment. We lymies need to stay together!! I’m on fb as Lisa Khaleet. I will work as long as I can, be the best mother and wife I can be. Keep fighting!
Mpumalanga South Africa. Yip. We have it here as well. But still very unknown disease in South Africa. Fortunately I am being treated by LLMD. Praise The Lord. Without her I would not have been here today. Keeping all fellow Lymies in my thoughts and prayers xx
Infected in 1974 at age 18. Told I had “mono” and just had to “get over it”. Undiagnosed for 30 years. 58 now. Suffering greatly. Have tried every protocol there is. I will never be healthy again. Bedridden now.
It is time to quit “raising awareness” and asking for change. It is time to DEMAND change. To DEMAND help.
Was diagnosed last year with Lyme. Treatments (best as possible for now—what the hell does that mean) There is no CURE, YET ! Testing itself is vague, something must be done and quickly. The CDC said last year we had a 10 FOLD increase. What happens is we have a 20 FOLD this year? I have never been the same since and 1/2 afraid to mow my lawn again !! Just by the wind blowing, can change many areas that are not known or reported as of today.
It will probably take someone real important to get this horrible disease, then watch the action take place. THANK GOD for “exsisting conditions” Bless you all and best of luck to you !!
If you do have the tick and it was attached, there is now an ‘at home’ test you can use to test the tick directly. Within 5-10 min, you’ll know if the tick carries the borrelia bacteria which causes Lyme and if you’re at risk vs. waiting for blood work. The test kit is called Lymenator (www.lymenator.com). I, myself, went 8 years misdiagnosed until I finally went to an alternative doctor who recognized the symptoms. I wish I would’ve found the tick!
New jersey anyone? We all need the support
We’re so sick and weak with Lyme and other co-infections, they (CDC, etc?) bank on the likelihood we’ll never have the strength to fight back enough to have our illnesses truly heard and understood! Wondering if and why some really don’t want an answer/cure for us… The past 16 years of my once beautiful life have been stolen trying to fight this…. I’m weak, desperate and losing all hope….
In 2012 I became progressively sick throughout the year. I diagnosed myself and tested positive for Lyme from the fluid of my swollen knee. My wife and I thought great, now all I need is some antibiotics to get back to normal. After the first treatment I realized I had chronic Lyme and found the doctors have a limited ability to treat us and there are to few doctors that are willing to buck the system and help the patient. Now I, like so many other people rely on support groups and under the table medications to treat myself. I also spread awareness of Lyme Disease and try to help people diagnose themselves because I feel the medical system is too caught up in naming diseases then curing them.
I was infected probly 20 years ago in Canada ,and many more times probly on Camping trips ,went to 15 DR in Canada been diagnosed with fibro ,R.A bipolar finally traveled to Czech republic and had positive spinal tap ,but not LLMD available in Canada or Czech move to Germany for Treatment ,lost all I work hard as RN ,and been bedridden for 5 years ,thanks to ignorance of recognising Lyme disease in Canada
thank you Lisa and Paul you are wery Special
I would not wish this on my worst enemy. I was misdiagnosed with MS, and tried the Copaxone shots (broke out in hives with a temperature and pain) then went on Avonex for a year (developed suicidal ideation). I could kick myself for blindly trusting the Neurologists. They don’t know the cause, yet seem VERY confident in prescribing drugs for it. Came to find out that MS is a big money maker for some. It’s a billion dollar disease, and I know they will NOT find a cure, because it’s very profitable. MS is very common in Canada yet Lyme is not? Makes you wonder why the tests are so inaccurate. In my opinion they do not want better testing, because it will take money away from treating diseases of unknown origin. Very few doctors in Canada know how to treat it, as they feel a few weeks of antibiotics are good, but they know NOTHING about the co-infections. This infection has taken away my health, my money, and what little self esteem I had. I hardly go out, because I am so tired and am in pain. This is not a disease for the weak. You have to find help yourself, because no one is going to help you. You wonder why suicide is so high with those who have this. I don’t wonder as I live and have been for a very long time. Day after day, week after week, month after month year after year.
3 yrs 4 months with a visible tick bite dr ignored said it was something else. Get these doctors better trained. And its not just lyme its co infections as well YOU have kept us sick racking in on unnecessary tests unnecessary medications. Our disease is profit for you. But torture pain suffering heartache and fear to us. We all had beautiful lives who gives you the right to play god ? Fix what you’ve created and allowed
And I’ll be damned we are going to pay one more cent out of pocket. YOU are gonna pay. Your mistakes on inaccurate testing,misdiagnoses,this is YOUR fault not ours. You should be held accountable for every red cent of the torture and misery weve suffered and endured by your FALSE TRUTHS AND INNACCURACIES.
Short and simple. Its totally ruined my life. I know nothing but sickness and pain. Has ripped my family apart. And most important prevented me from being a part of my grandsons life. What the cdc and idsa have covered up for years is unexusable inhumane and unjust. How dare you do this to innocent families, children, you knew all along your tests were inaccurate now you admit it and you still do nothing. Well your going to this year. God will punish you for your deceit. We want our lives back. You are the culprits for our tremendous suffering. And so help me god I and hundreds of thousands more will make sure this mayday 2014 you will remember what you’ve done to all of us. YOU WILL MAKE THIS RIGHT. none of us deserved this . were innocent human beings. God have mercy on your souls for what you’ve ALLOWED.
I have had lyme since 2006 and Rocky Mountain Spotted Fever since 2010, along with many co-infections and parasites. I am broke, lost my job, and a lot of my friends and family. But I am alive- here to fight another day. God has blessed me through this journey and will continue to bless me because I am his child and I have given this over to him. I have Faith and Hope for whatever God has planned. I pray for all those that have Lyme.. It is a torturous disease. May a cure be found!!!
Seems we are all broke sick and dropping friends and family like flies.
1995 hatte ich mehrere Zeckenstiche . Es traten Symptome wie Sommergrippe ,Wanderröte etc. auf . Der Hautarzt verschrieb mir nur eine Kortisonsalbe , da er keinerlei Kenntnis über Borreliose besaß . Seitdem habe ich die Hölle durchlebt , mit regelmäßigen Krankenhausaufenthalten mehrmals im Jahr . Seit 2013 kenne ich nun die Ursache , dieser ganzen unerträglichen Symptome . Es ist eine chronische Borreliose . Mittlerweile habe ich mehrere AB Therapien , 2 davon stationär im Krankenhaus , hinter mir . Seit Oktober 2013 bin ich nun krank geschrieben . Mein Herz macht Probleme und ich habe keinerlei Energie mehr . Ich bekomme jetzt eine Dauer-Antibiose , bis die Symptome besser werden . Immer wieder , habe ich Ärzte , in den letzten Jahren auf meine Zeckenstiche hingewiesen . Bis auf eine 3 wöchige AB -Therapie wurde nichts unternommen . Danach war laut Ärzte , die Borreliose ausgeheilt . Mein Leben wurde aus Unkenntnis und Arroganz , in den letzten 18 Jahren ruiniert !
I had been misdiagnosed the first year after telling several drs I had found the tick engorged under my breast and it had been there the entire 4 days that i layed lethargic in bed with my hands and feet crippled. I was so sick I couldnt eat and didnt leave my bed other than to try and talk to the rest room. I had to hold the wall because my feet were curled up and so were my hands. After many wrong diagnosis I finally found a PA who had lyme herself and sent in a igenix lab kit for me and it came back positive for lyme and now yrs later im positive for my blood smear for babesiosis parasites. My world changed after that tick. I had several others on me growing up on a farm and may have been exposed prior beings from what the drs say that I had late stage lyme symptoms. My picc treatments helped for a while until I suffered a mild stroke and was forced off picc treatments. I also have protien S deficiency along with ababesia causing a clotting disorder and the hemotologist says theres is nothing she can do until i have a clot lodge someplace in my body like a stroke or portal vein thrombosis like my father had. It seems drs would rather not be bothered by a case of something difficult. Now i am back on oral antibiotics and they make me very nauseated. I feel like a burden to my kids and not sure how much longer I wish to do this. They are both at ages they wish to have their own lives and dont want me to live with them. I refuse to be placed in a home. My dog is what I live for now. social security is reevaluating my case to see if they are even going to approve me again. It seems like its always a struggle to try to keep a roof over my head and pay for treatments. Right now the rental im in has flooded and ive lost vision in both eyes and cant go back there. Its a health hazard. I have to try and call the health dept and see if they can do something about the neighbors septic leaking and flooding my garage. for the past month. I have no where to go now and no help. Does anyone know if there is someone that can help me with this health hazard? My landlord has been made aware and he tried to tarp the roof and it made it worse inside and the water is coming in under the walls. We had to place our own sand bags down and he said we were going to rot the already rotten siding so it seems its going to be a fight with him. I just want to get my sons tools out and things that are important and never go back. Im thinking about trading my car in for a van so ill have a bed in it and be able to just sleep in it and know i can at least have my dog with me that way and i wont have to worry about flooding anymore. I can just travel from state to state or wherever I want and store what little belongings I wish to keep in a small storage unit untilI find a small studio that is safe to live in. I am just praying that this time I get my feet and hands back and don’t end up in a wheel chair.
I am so sorry you are suffering I felt like I was reading a story about myself Is there treatment for ababesia??
Thank you for all you do!! I send my family and friends that have a hard time understanding Tick Borne Infections to you site!! As you know I LOVE your site!!
I was first bit in 1983..almost died and was told it was a sever case of mono…then rebit in 1987 but had no idea that the tick I pulled off could cause so much pain and suffering daily for me and my girls. I was not ever treated for TBI’s (Tick Borne Infections) and then diagnosed with CFS, Fibro, degen disc disease, etc………gave birth to my three beautiful girl and not knowing gave all my infections to them…they now suffer daily, can not attend school or even get out of the house on a regular basis.
We or at least the kids that suffer from this disease deserve a cure…I would take all of there pain and sickness from them if I could and they could live a “normal” life…….Thank You Lisa and Paul for doing what you do…because of you I continue to fight and never give up no matter what.
I love you all so very much – Diane
I hope this helps you it is helping me. http://www.treatlyme.net/treatment-manual/ slowly but steadily!
Been battling this nasty disease for 10 years and going broke paying so much out of pocket. Finally doing better after getting clinically diagnosed a year ago. We need better testing for diagnosis, more doctors taught how to diagnose and treat this disease as well as the CDC and ILDA to update outdated information as well as guidelines for diagnosing and treating so insurance will have to cover this expensive disease! So much not right in the government concerning this Lyme disease, and the victims and their families really suffer for it.
Please add Surfside Beach , South Carolina to your map. I was bit in 2005 after teaching a 3day outdoor classroom field trip to 125 fifth graders from my school at Lake Marion, South Carolina.
I wasted precious months and years finding out my diagnosis. Finally got sick of doctors saying “I don’t know – I find nothing” so I flew to NYC and saw one of the top Lyme doctors in the world.
He gave me a diagnosis and positive blood work came back from IGenex in Calif.
I was close to death and have been recovering after having an 18 month picc line.
I was diagnosed when 12 treated and believed it was gone. Now at 32 I’ve been back on treatment for two years and realized it was never treated correctly years ago. I was misdiagnosed this time for three years seeing every kind of specialist out there and every test possible. I was told I had everything from cancer to fibro to lupus and so on. Personally I’ve learned this is the worst form of torture anyone could live thru and with new laws in medicine it only makes it harder for us to receive proper treatment. And it’s taught me never ever think you’ve been thru it or understand it unless you’ve actually walked it.
what treatment r u using
I’m with you. It’s so lonely out here! A
Bridget, your story sounds SO much like mine!!!! After falling deathly ill in fall of 2007, it took time (& multiple diagnoses) to realize I had relapsed with the Lyme Disease (it wasn’t treated hardcore enough when I originally fell ill in fall of 2001).
Unfortunately it has taken so many years for Dr’s to realize there has to be a clinical diagnosis. Test are not accurate and people can not wait. The longer they wait the sicker they get. I have been treated with many different protocols. Sometimes feeling well for a while, then something would put me right back. This last treatment has been a research study for Johns Hopkins University. The different combinations of meds Go after the persister cells in your body. This is where other antibiotics and meds have not been able to reach. It’s been pretty amazing so far.
If you want to get better… Buy the book “why can’t I get better? The mystery of Lyme and chronic illness” by Richard Horowitz
This is a book that tells you all the cross references to every other illness and how they can be related. You won’t be sorry You bought it! You can go to http://www.can get better.com you’ll get a great look at how things should be done.
AMEN Bridget! No one truly gets it unless they walk in it. And even some that walk in it, are still ignorant to what could really happen. I wish you well.
I was bitten in 1997, it took 4.5 years to figure out it was Lyme at which point I found Dr. Ernie Murakami thanks to Ron Gerhardi – bless his departed soul – and 2 years of treatments later (and THAT”S long term antibiotics) I am here, well and fully functional. Not everyone got the chance I did and I am still here fighting for those that need the help I received. Thanks for taking the time to read this.
please tell what your treatment was
This map is a really neat idea.
Infected ? Bitten 1984….Multiple vector borne infections and symptoms ..no treatment directly associated to these as I am denied by medical staff …negative tests = no disease…tests only 35-45% accurate at best.
Makes no sense.
treat yourself http://www.treatlyme.net/treatment-manual/ and dont give up!
I was infected after a camping trip to a MO. State Park in 1998. Despite having a bulls eye rash and mild flu symptoms, my Doctor said there was no Lyme in MO and diagnosed me with a spider bite. The next 10 Drs told me the same, “No Lyme in MO…” Over the next 11 years I saw a total of 26 Doctors, even going to the Mayo Clinic. I was diagnosed with everything from ALS, MS, Parkinson to Hypochondria. By the time I was correctly diagnosed with Late-Stage Neuro-Lyme Disease in 2009, I had lost most cognitive function, including the ability to read and write, suffered seizures, had no feeling in my body, struggled to communicate and had paralysis. It has taken 5 years of aggressive treatment for me to regain any ability to function. Because Lyme Disease was not recognized in MO. nor treated adequately, I am now disabled, have lost my business, and must travel 6 hours to another State in order to see a Doctor who will treat me. It is imperative that people know Lyme is not isolated to any specific areas, but is a National health crisis as well as Worldwide epidemic.
I am from Mo,,,I also had all those same diagnosis over 28 yrs,,started in 86 in NW Mo,,,,finally last year my dog started having seizures,,,he was finally diagnosed with Ehrlichia,,,then I got tested,,was Ehrlichia,,RMSF,,,Lyme positive,,all diseases were late stage,,last 5 yrs had almost been totally nonfunctional,,,live in SW Mo now,,,had to go to U of M in Columbia Mo,,to get tested,,,these Drs here are ignorant,,,After reading your description+ my experience,,,,I would say Missouri has some Very Nasty strains of this stuff,,,I’ve been on doxycycline since Aug. 2013 ( wrote this March 2014 )I am getting better ,,,will continue treatment until symptom free and then some ,,,probably another year,,,,wishing you well,,,,John
John, I am so sorry you too are struggling with this disease, but am glad to hear you are showing improvement. If you find you need to see a LLMD (Lyme-Literate MD) or more aggressive treatment that what you’re currently doing, I am happy to refer you to an excellent MD in Iowa who accepts insurance, including Medicaid and Medicare. They submit all treatment to insurance as well. Wishing you health and every happiness, please feel free to contact me via FaceBook for info; Nancy Cleek Dolan
Can you please tell me LLMD is located in Iowa? Iam in southern Illinois and still cant find a LLMD doctor close to me.
We;ve been to Mo and lived there but got sick in Arkansas. Doctors are ignorant here too. Looks like Florida LLMD’S are for us.
Where at in Arkansas? I live just south east of Little Rock. Have lived in Arkansas my whole life. But yet there isn’t “LYME” I. Arkansas!
Where at in Arkansas? I live just south east of Little Rock. Have lived in Arkansas my whole life. But yet there isn’t “LYME” In Arkansas!
Are you kidding? Ark is loaded with deer. Where I got it.
What doctor in Columbia due you see? If Dr. C. Can’t see him. I travel to Tennessee. Please contact me if open to conversation.
Dr. C is booked solid for years
I’m so sorry for what you both have gone through. I live in NY and I wasn’t diagnosed for 4-5 years but that was in 1988 by then, I was so sick. it’s been 27 years and I have every strain of tickborne disease. LYME, bartonella, babesia, mycoplasma to name a few. The CDC does not want Dr’s to treat Lyme & tickborne with the proper protocol. I am so grateful for my LLMD. He saved my life. If you need help trying to ask the right questions to your Dr. There is a great book “why can’t I get better, the mystery of Lyme and chronic illness” this really will help you find the pathway to get better. It is by Dr. Richard Horowitz
I wish you much success and a healthy future!
I’ve been down pretty much the same road it sounds like. I too lost my business and ability to work didn’t have money for llmd but this manual along with my PCP finally getting onboard has helped http://www.treatlyme.net/treatment-manual/
What treatments are you recieving??
Nancy, I am also in Missouri. What part? I have a similar story. Would Luke to connect with others locally.
We are going through the same thing with my sister. Lyme Disease isn’t recognized in KY either. We haven’t found a doctor yet that has been willing to help her in any fashion. She has been bedridden since 2008 as well and has severe insomnia. She can only eat free-range gluten free chicken, gluten free brown rice, a raw vegetable, and Althelo’s original hummus day in and day out all day long. We are praying for you.
Wow! I thought my issues were bad. Everything you said I went through and have permanent damage to discs in my neck and back. However, my symptoms started last July as well as my bite. I’m in Louisiana. So, yes it happens everywhere. Sorry to hear your story, but so nice to hear you are getting the help you desperately needed and deserved!
What I thought was just a simple tick bite has turned out to be my worst nightmare! Suffering since spring of 07
http://www.treatlyme.net/treatment-manual/ hope this helps you like it has helped me. I’m not a hundred percent but am slowly getting better from being bedridden for years. I also had rocky mountain spotted fever and a co infection bartonella I am still treating all of them with herbs and a combination of antibiotics
Wow, same timeline as me…
Thank you for adding me to the map.
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