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Tickborne Diseases: Widespread, Serious, and Taking Us By Surprise

I spent most of last week at the International Conference on Emerging Infectious Diseases, a 1,500-person meeting of epidemiologists, physicians and microbiologists that is co-sponsored by the Centers for Disease Control and Prevention and the American Society for Microbiology. The ICEID, as it’s known for short, happens every two years, but this iteration was way overdue, postponed twice from its initial date of spring 2014 because so many potential attendees were working on the international outbreak of Ebola.

As a result, when this scary-disease convocation assembled, there was a lot to talk about—and in fact, a good portion of the meeting was devoted to re-examinations of the public health response, medical strategy and vaccine research that swirled around the Ebola epidemic. But at less-attended speeches, and in the afternoon hours when the newest research debuts on big posters, other public health concerns—less headline-grabbing but equally serious—peeked through.

I came away thinking we ought to be a lot more worried about ticks.

Some people already are, of course. As I described last month, the CDC has redrawn its maps of Lyme disease, the disease most commonly carried by ticks, to display how rapidly risk of it is rising in the northeastern US: 260 hot-spot counties now, compared to 69 20 years ago. (Two years ago, the CDC raised its estimate of the number of new Lyme infections that occur each year in the US from 30,000 to 300,00—10 times as much.) Also last month, the Entomological Society of America released a “policy statement” on ticks that amounted to an urgent call for action, saying in part: “…Environmental, ecological, sociological, and human demographic factors [have] created a near ‘perfect storm’ leading to more ticks in more places throughout North America.”

What’s at stake in the tickborne disease explosion flagged by the ESA and displayed in the ICEID presentations isn’t only Lyme disease (but more on that later). It is also other diseases carried by ticks—anaplasmosis, babesiosis, ehrlichiosis and more—that are less well-known and, because of that, often not detected or treated. Here, from the conference, are a few examples.

A group of researchers working at the Minnesota Department of Health suspected that the number of tickborne diseases recorded in Minnesota was too low. That’s important, because the state’s count of infections becomes part of the national record, and those numbers determine whether tick-related diseases become a priority for funding. To test the state’s record, the team randomly selected medical charts from hospitals and clinics in a Minnesota county where Lyme and its brethren are common, and checked them for billing codes that would indicate whether the patient was tested for or diagnosed with a tickborne disease. The result: There were three times more cases of Lyme, anaplasmosis and babesiosis occurring than the state knew about.

Those high rates in Minnesota turn out not to be unusual. In Arizona, one-fourth (11 out of 42) of high school kids attending a summer football camp came down with another tick-related illness, tickborne relapsing fever. Five of the 11 had to be hospitalized. It was the largest outbreak of the disease in Arizona in 30 years. Even though they were staying in rustic cabins, the students had no idea they were in danger of ticks, and that turns out not to be unusual. In Georgia, researchers from Georgia Southern University interviewed people visiting the university health center about whether they thought they might have been exposed to ticks, and then compared the accounts with blood tests that could confirm tick bites. Out of 258 people, only 4 percent of them knew they had been bitten by a tick—but 56 percent had antibodies showing they had been bitten.

And more of us are going to have to start wondering about our risks. Until now, a built-in protection against tickborne diseases has been that the tick species that carry particular pathogens have specific geographical ranges. That’s why, for instance, Lyme disease clusters in the northern United States, while the illness that sickened the Arizona high schoolers flourishes in the Western US. But as climate change affects animal and insect ranges, those guarantees are collapsing. In Maryland, researchers for the first time have found local ticks carrying babesiosis, a parasitic infection (sometimes called “America’s malaria”) that can be passed undetected by blood transfusions and until recently has been confined to the Northeast.

New tickborne diseases are emerging as well—and often, flying under radar. Dr. Bobbi Pritt of the Mayo Clinic described an illness that affected two men seeking care at a Mayo satellite clinic in Eau Claire, WI: one a healthy 54-year-old who liked to spend time outdoors and was bitten by a tick at a woodland cabin, the other a 23-year-old cystic fibrosis patient, recovering from a double lung transplant, who was bitten in his own backyard. Thanks to alert lab workers who noticed the men’s test results were a little off—a finding later backed up by a US Army lab, and then by the CDC—the cause was identified as a never before seen infection related to a tickborne illness carried by mice. The disease is so new that the organism hasn’t yet been given a name (Ehrlichia muris eauclairensis has been proposed, to mark the location where it was first spotted), but already, Pritt said, 80 patients have been identified in five states. One-third had to be hospitalized. It’s not clear how wide a range the disease might have.

Finally—because descriptions of tick-related diseases seem to focus on fever and headache and not very serious-sounding symptoms—it was troubling to be reminded by Dr. Paul Mead of the CDC how serious Lyme in particular can be. He described the national detective work that swung into action after a young Massachusetts resident passed out while behind the wheel of a car; the car rolled to a stop, paramedics attempted to revive him, and when he could not be brought back, his tissues were given for transplant. A careful worker at a tissue bank noticed signs of inflammation inside his heart—and that led to a discovery that the victim’s undiagnosed Lyme disease had caused sudden cardiac death. Scouring patient reports, Mead said, revealed 45 patients who survived “heart block”—an interruption of the heartbeat—because of Lyme infection, and five others who died when their Lyme disease triggered what looked like a heart attack.

I’ve written elsewhere about the recent recognition of Heartland virus, Powassan virus and Borrelia miyamotoi in the US, and additional tickborne diseases in places as far apart as China (severe fever with thrombocytopenia) and Sweden (Neoehrlichia mikurensis). But to hear so many reports in such a short period of time just underlines: Tickborne diseases are increasing, in range and in severity. Whatever we’re doing to protect ourselves, it isn’t enough.

50 thoughts on “Tickborne Diseases: Widespread, Serious, and Taking Us By Surprise

  1. Ehrlichia is named for Paul Ehlich. Please note the spelling as you misspelled it multiple times in the above post.
    Similarly there is no such pathogen “Noerlichia mikurensis”. I believe you were trying to type “Neoehrlichia”.

    MM: Fixed! Thanks for the correction.

  2. Tickborne diseases are not a new thing for veterinarians, or a surprise; we have been fighting them for decades. In 1966, I isolated a new Babesia, Babesia odocoilei, in white-tailed deer in East Texas while at Texas A&M University. It had been present in cervids for who knows how long, but no one had identified it before. I was fortunate/lucky and had a blast doing the original work, right place, right time.

    We fight these tickborne diseases daily, and we haven’t identified all of those that are found in all of these tick species, far from it I am afraid, that effect all the animal species, including humans. These diseases are capable of destroying any host they infect, are difficult to treat, and in many cases, impossible, or nearly so, to totally eliminate from the victim’s body, remaining as a low level, possibly lifelong infection.

    Ticks have been around longer than we, are tough, are loaded with known and unknown disease agents, and are here to stay. As time passes, we will identify more of their infectious agents, but quite possibly we will not identify all for a long, long time, or ever.

    MM: Thanks very much for sharing your expertise!

  3. I was bit in may in the Philadelphia and was hospitalized for 3 days. Lymes test was negative twice. Still no answer what it was. The hospital couldn’t tell if it was tick bite or a spider bite.

  4. I recently learned that opossums eat massive quantities of ticks, benefitting us by reducing (to whatever extent) the number out there waiting to bite us. Yet the humble opposum is much-maligned and misunderstood, probably in part because of its less than stellar appearance. (Though in truth, when viewing wildlife rehab and rescue pages, I find their small faces and ears cute.) I would like more people to know the benefit this animal does us so they are at less risk of poisons and harm.

  5. I was recently diagnosed with the newest tick illness called Alpha Gal allergy. AG makes it victims allergic to all mammal meat. Many are also allergic to dairy and the products with mammal including meds that contain gelatin. It is an anaphylactic allergy that causes a variety of histamine responses in the body. AG is carried in the saliva of ticks and is thought to be transferred through their bite. The new tick diseases are becoming epidemic and I hope they make it a priority to help us. Living with these illnesses is life changing and debilitating….

  6. The problem is misdiagnosis of these diseases. Living in South Africa we are told that Lymes is exceedingly rare and almost impossible to get. My husband has been for more eeg’s and tests to try work out why he has such severe headaches and loss of memory over the last three years and only in the last month was able to find a Doctor who was able to diagnose Lymes as being the cause of the frustration.
    There needs to be more of a world wide awareness of these diseases and problems that come with them.

  7. I was diagnosed with Lyme Disease and co-infections 3 months ago. When I was 17 I did a lot of hiking and camping in BC, mainly Kamloops. In a short period of time I had been bitten twice. And both times the ticks had been latched on to me for quite a long period of time before I actually felt them and of course, removed them. One of them had to be removed for me because it was on the back of my head in my hair line. We didn’t know about the seriousness of how harmful these pests are. I’ve had Lyme and co infections in me for 20 years now! My body just became more and more sick as time went on. I have been diagnosed and treated with a number of different diseases over that time and still, no one could figure out why nothing seemed to help me and I kept getting more sick! A good friend of mine who works in health care suggested that I get tested for Lyme Disease. Unfortunately the first person I spoke to didn’t take my request seriously and I didn’t get tested. So I went to a Naturopathic Dr who drew my blood and sent it to the Igenex Lab in California. It came back showing that I have Lyme Disease and co-infections. As this article says, ticks carry a number of diseases. My lab results also showed that my immune system is basically shot. The numbers were extremely low. My Dr told me that I’m very sick. Something I’ve known for SO long. This was an extremely emotional moment for me. And so the treatment began. I had to go on a number of different supplements to decrease my liver enzymes and bring up my red blood cell count. I did this for nearly 2 months until the results of my blood work showed an improvement. This meant that I could begin antibiotic treatment and my body would manage it far better now that my immune system was up. I’ve been on antibiotics for 3 weeks now and I’m about to add the second one. I’m also taking 15 supplements. I feel lousy which is to be expected. The Lyme Disease and co infections aren’t going to like being attacked and this will make me very sick. We have no idea how long I’ll need to be treated. It could be months, years or the rest of my life. It’s terrifying! My body has permanent damage. I went for an MRI on my brain and spine yesterday. And I’ll be seeing a Neurologist very soon. I encourage anyone who has been bitten to seek help immediately. Your chances of recovery are far greater. And if you spend a lot of time in the outdoors in places where you know there are ticks, take extra precautions to cover up. Also, some people don’t know if they’ve been bitten. Not everyone gets a rash. If you feel unusually sick or “off” after any time spent hiking, walking, camping or gardening etc, especially in tick infested areas, seek help immediately. Also, please watch the documentary called, “Under Our Skin”.

  8. Thank you so much for attending the conference, & your informational article! I battle with lyme disease, as well as many tick borne co-infections. Therefore, I greatly appreciate any accurate (which is rare) publications that help raise awareness to this epidemic!

  9. Now if only the CDC recognized that the standard 6 weeks of antibiotic treatment is not sufficient in eradicating this awful disease. Some people suffer for years from chronic Lyme and feel their illness is invalidated when the CDC won’t even recognize that it exists. Doctors who treat Lyme with long term antibiotics have heavy sanctions placed upon them and may even have their medical license taken away. It’s time to allocate more research into this politically orphaned disease and aid the thousands who suffer so greatly.

  10. The CDC accepts that lyme is serious enough to cause cardiac arrest but not serious enough to go chronic if under treated? How does that work?

    1. Your question about why can’t humans have a product that will help protect against ticks is a good one, but I don’t have an answer. So far, companies have only offered the spray-on products and no creams or orals that I know of.

      Generally, animals are treated with tetracycline/doxycycline family antibiotics when we diagnose or suspect (signs & symptoms) a tickborne disease. This family of antibiotics have been the most successful for us, but nothing is perfect with this set of diseases, Lyme, Rocky Mountain Spotted Fever, Ehrlichia, and all of the other known and unknown tickborne infections. They are overall very difficult.

      I have never heard of waiting until you get better to begin antibiotic therapy. For veterinarians and the M.D.s I know in Texas and around the country, antibiotics are begun as soon as the tickborne disease is diagnosed.

  11. I was misdiagnosed and have been fighting Lyme, Babesia and Bartonella for 19 years. I nursed both my children and gave it to them also. I almost died but I was lucky enough to be diagnosed properly at the last minute and have been in treatment on and off for ten years.
    Thank you for writing about tick-borne illnesses. Unfortunately, the CDC and other groups such as the IDSA have done much damage to the issue of patient care and the testing, diagnosis and treatment has been a debaucle. These doctor groups have known about ticke-borne illnesses for a long time and have put politics before patients. I’d encourage you to look deeper into the politics and corruption that has made being a patient in both the USA and Canada a nightmare. Please contact other groups like ILADS.org or CanLyme.com for information that Lyme literate doctors and researchers have been putting out for two decades and which groups like the CDC and IDSA have ignored. Those studies are out of respected universities like Stanford and Harvard, along with a multitude of articles from respected medical journals. The politics of Lyme would be a great next book for you I think. You’ll be amazed at what you find once you start digging. The movie ‘Under Our Skin’ is a good place to start. Thank you for writing about this issue that has affected my family for so long and I do hope you follow up.

  12. I’m thrilled at the coverage you are providing, but must point out that there is not a sudden “explosion” of tick borne diseases. They’ve been around for decades and have been steadily increasing as our health officials and medical “experts” have dismissed or trivialized or ignored the risks. This perceived “explosion” is really just the tipping point of an epidemic that can no longer be ignored.

    Lyme Disease has been called “mild” and “rare” for decades while patient advocates and physicians who dared to disagree with the official dogma have been called crazy or “quacks”. The CDC thought Babesia was so rare, they didn’t bother to encourage lab tests that actually work, leaving countless patients undiagnosed and most doctors ignorant of the disease.

    These same “quacks” who take TBDs seriously have been sounding the alarm bells for 30 years about tick borne diseases, but have continuously been dismissed or ignored. Even reputably produced scientific evidence contradicting the official dogmas have been swept under the rug.

    Bartonella, a silent epidemic as researcher Dr. Ed Breitschwerdt calls it, continues to go unrecognized and ignored, and isn’t even acknowledged as a tick borne disease.

    I hope that NatGeo digs deeper into this topic. It is a great story for a reporter and wants to dig deep into a complicated story filled with controversy, suffering people, heroes, and villains.

  13. “Until now, a built-in protection against tickborne diseases has been that the tick species that carry particular pathogens have specific geographical ranges.” This is not true. You don’t need an army of ticks to infect you, you only need one. Ticks are everywhere that birds spread them.

    First cases of Babesia and Lyme in the US:

    – First case of Babesia was in the San Francisco area in 1966.

    – First cast of transfusion transmitted Babesia happened in 1979.

    – The first confirmed case of babesiosis acquired in New York occurred in Suffolk County, Long Island in 1975.

    – The first confirmed case of Babesiosis acquired in Wisconsin occurred in Washburn County in 1983.

    – The first confirmed case of Babesiosis acquired in Connecticut occurred in New London County in 1988.

    – The first case of a patient with an erythema migrans (Lyme rash) was a 57-year-old physician who had gone grouse hunting in October 1968 in north central Wisconsin. He was treated successfully for symptoms and EM rash by a Milwaukee dermatologist, Dr. Rudolph Scrimenti.

    http://www.facebook.com/BabesiaBlows

  14. Both my son and I have Lyme. We both have periodic “flare ups” as we call them, and are placed on Doxycycline for the usual 3 wk period. My son, however, is also a cancer survivor, and his ongoing health issues since being diagnosed with Lyme have compromised his state of health monumentally. It’s a constant guessing game … possible post chemo effects or Lyme? He was recently given a 10 day course of doxycycline due to the usual Lyme symptoms rearing their head, i.e. chronic headache, severe fatigue, body aches and pains, etc. Ten days? I was both confused and shocked that that was this doctor’s knowledge of treating Lyme disease. My son has been seen by countless neurologists, cardiologist, GP, infectious disease specialist, and not one doc seems to be well versed in Lyme treatment nor do they seem to take this disease as seriously as it should be. It’s extremely frustrating not to mention debilitating for a 26 yr old young man. Research funding has got to become a priority for this disease, and doctors need to become better equipped as to how to detect and treat Lyme more effectively. It’s long over-due! Far too many people are suffering with this disease, and so many more are going undiagnosed for years resulting in permanent debilitating health issues.

  15. Excellent piece, thanks!

    We need more funding for a vaccine against tick saliva. It should kill the tick as quickly as possible (since a few viruses transmit very fast; while borrelia ie Lyme often takes 24-72 hours [not always] and the rickettsias usually 12-24 hours [occasionally less]. Some work has been done on such a vaccine–but if funds were poured into it, and it were successful, we could be protected from tick infections. As Carl Zimmer wrote in an article, they are the Swiss Army knife of vectors. They effectively transmit so many different bugs.

  16. I was bitten by a tick in the mid 70’s. I was visiting North Carolina when I came down with a high fever so high it went to the end of the thermometer. Being from Texas all they gave me was Darvon and sent me on my way. I was semi conscience for 4 days and lost 36 pounds in that short amount of time. I was 94 pounds and skeletal looking. I also lost my short term memory and the skin on my hands and feet. Fortunately my hair did not fall out all at once but it was all replaced over time.
    I will never forget what I remember the experience and the people who took care of me.

  17. Thanks for an excellent article. I suffer from the effects of late stage Lyme Disease as well as several co-infections. I have been sick for over 30 years but was diagnosed only 2 years ago. Treatment has been hard to find and expensive. However I am about to begin apitherapy or Bee Venom Therapy which is affordable and has great promise not only for improvement but for complete healing. I will be using live bees and self-stinging.

  18. Very good article and so glad to see that there are places where “zoonosis” is being addressed in humans. Also going with Lyme Disease are the co infections that you mentioned but there is also Cat Scratch Fever aka Bartonella. I know of a whole grade school infected from head lice so it’s just not “ticks” any more, here is one of the most enlightening articles I read on “Vector Born Disease’, its horse/deer flies, mosquitos, sand/pet fleas, a whole host of vectors not just ticks and this is where the HUGE mistake is.

    Also, it appears the medical community is not familiar with the migration of our birds in North America. All the birds with ticks up in the north fly south for the winter, dropping ticks along the way. That is why we have Lyme and co infections in FLorida and I have to state that fact to Dr who tell me there is no Lyme in Florida. I ask them who picks the ticks off the migratory birds coming here each winter?? At least they start thinking then that yes it is spread all across this country every year, in fact twice a year with their coming and goings. If you look at their flyways on maps you will also see this is the largest marked area of reported Lyme disease. I felt that you understood the need for Lyme and co infections to be addressed and would understand this. Thank you for your article and I hope you enjoy this one on DR “B”, the foremost authority on Lyme and co infections. https://cvm.ncsu.edu/uncovering-the-stealth-pathogen/

  19. People stricken with Lyme Disease, patient advocacy groups and physicians compassionate and courageous enough to risk treating patients have been informing the Infectious Disease Society of America for DECADES that the currently enforced IDSA Lyme Treatment Guidelines (enforced by insurance companies and state medical physician review boards–sometimes provided with paid expert testimony from IDSA Lyme Treatment Guideline authors) are woefully inadequate and harmful to hundreds of thousands of patients world-wide.) Despite a State Attorney General’s investigation uncovering serious conflicts of interest in past IDSA Treatment Guideline policy makers–(concerning the holdings of patents and/or the development of a failed vaccine) the IDSA has not changed their Lyme Treatment Guidelines to allow for physicians to exercise clinical judgement on a case-by-case basis. Instead, the IDSA has continued to uphold the theory that Lyme Disease is easy to test for, easy to treat and that their recommended treatments are effective. Currently, after much public pressure, the IDSA has announced plans to revise their Lyme Treatment Guidelines by essentially the same (or those of identical opinion) professionals who have sat on the last two Guideline Committees. The composition of the current Guideline IDSA Panel members does not conform with the Institute of Medicine’s rules for medication treatment guideline member selection. Contrary to IOM standards, the IDSA has not allowed even one Lyme patient to sit on the Panel, nor has it allowed any member of ILADS to sit on the Panel. The panel has been stacked, as usual, with like-minded individuals. Any expectation by suffering patients that the next IDSA Lyme Treatment Guidelines will significantly differ from the past will likely be disappointing. Patients have been trapped in a medical No Man’s Land by official denial of their suffering and an accompanying and official denial of treatment. In my opinion, the handling of Lyme Disease by the various private and governmental policy makers in our country is is either based on arrogance and ignorance–or is the most extreme case possible of purposeful and unconscionable medical neglect.

  20. Thank you for the informative article concerning Lyme Disease. I was bitten over hundred times in Texas back in 2009. I knew actually what I had and the treatment . It took until 2012 to find a M.D. that had the knowledge and take the risk in treating me. I now have several other auto immune diseases caused by Lyme Disease. I will be on treatment for the rest of my life. It’s a very frustrating situation, but, I’m very glad it is finally coming into public view.

  21. Kate above – That’s awful that you’ve suffered so much, and that, like so many people (especially women), you got blown off when you complained. However, it would be wise for you to get a second opinion any time a health care provider, in any modality, tells you that you’re “permanently damaged”, that you may “need” to be treated for “the rest of your life”, but, oh yeah, you have to expect that treatment may “make you very sick”. That sounds like the same spiel you get from the statinize-the world types. If this guy can’t guarantee that treatment will either cure what’s wrong with you or make you feel better, you might want to ask a third party whether it’s worth doing at all.

  22. Thank you for talking about this. I wish more did. I am late 30s and grew up on farm and our farm vet did our lyme treating because doctors said my mom was crazy and told her lymes was far fetched. Had our vet at the time not treated us… i don’t want to imagine what condition we’d be in… In fact, in my late 20s I moved and today, even today, I can’t get treated after a tick bite unless I go through a whole slew of work ups that even the doctor says aren’t always conclusive. The doctors here still don’t like to admit it. What i don’t understand is why can I take my dog to the vet and in 5 min I know whether he has lyme or Canine Ehrlichiosis and me it takes a week? Never mind it may come back false negative.
    I also know that when on the eastern shore got bad with tick sicknesses, the antibiotic went from affordable to 300% price increase and when the vet world screamed fowl, things went back down, but it was seen as a way for pharmaceuticals to make money fast while ignoring the sicknesses. At least that is how people there suffering at the time felt. Politics and money in play while disregarding the people suffering. Also, newly found evidence shows that certain tick sicknesses are and able to now be passed not only through breast feeding, but sexual intercourse. Studies are still being done to make this a more undeniable find, but lyme is a mimic of syphilis. There is a ton of research on this both being a cork screw shape. They call them sisters… http://www.dailykos.com/story/2011/05/19/977411/-What-do-Lyme-Disease-and-Syphilis-Have-in-Common-What-is-Different# , http://www.lymediseaseaction.org.uk/about-lyme/neurology-psychiatry/
    I am stunned constantly how doctors still refuse to look for and treat tick born sicknesses. I have two friends who no longer can eat meat and it took them almost dying for a doctor to look for the tick sickness that causes that. I hope more people demand research and I hope more will continue to be found, shared, ACKNOWLEDGED, and talked about. Something needs to be done. Too many people I know suffer everyday. thank you for starting the conversation. Long over due.

  23. Thank you so much for bringing to light the issues that Zoonotic diseases bring to our community. We have a huge hot spot on long Island Ny. It seems like every few weeks I’m meeting newly diagnosed friends, colleagues and numerous pets.

    I have chronic Lyme disease that resulted in serious joint problems and issues with articulation. It’s been over a year since my diagnosis and I struggle with some form of this disease everyday. Reading through these comments has helped reiterate to me that we are a growing force that needs to do our own outreach and bring the message of PPE/personal tick checks to the community.

    I really appreciate your tact and attendence at that conference.
    Cheers

  24. Please don’t forget that the is now also an immune system allergic response to red meat caused by tick bites now too and it is happening more frequently as well. I am personally afflicted with this allergy and would like to see more research done on it as well.

  25. Thank you for writing an article that was not just ‘somewhat correct’ but actually ‘mostly correct’.
    I would love to talk more about Lyme, co-infections, my 3 year fight for my life with Lyme, Bartonella, a boat load of viruses and diagnoses that came about or came to light, and are commonly linked to Lyme. These being, Dysautonomia, POTS, Ehlers-Danlos Syndrome, Gastroparesis, Mitochondrial Disease, PANDAS/PANS and Mast Cell Activation Disorder. Some may have one or two, some have all…I have all but one.
    My two daughters have Lyme and Mycoplasma, one has Babesia and one has Bartonella. They have congenital Lyme, and one had a known bite.
    It was nice to hear Dr. Emerson here, talking like someone who truly ‘gets it’. You don’t get much of that from doctors, as we all know. I was lucky enough to find my way to remission, after 3 years of being severely ill, disabled and enduring a spinal cord and brain surgery. I went from having late stage Neuro Lyme (congenital, 37 years, plus bites), to living again and not merely existing. Like someone above, I lost 42 lbs. in a very short time, and was 92 lbs.. I reached a miraculous remission in just 9 months, with the help of an Integrative Medicine doctor, and both IV antibiotics and an alternative treatment.. I could go on for days about my story, my children’s experience, how I feel about the CDC, IDSA, insurance, etc.. If you’re interested in talking with me, my email is on my website. Best wishes, health and healing ~ Steph http://littletickbigproblem.com/

  26. jane (of Sept. 1), Kate will probably appreciate your sympathy. But, if you think there will be a better second opinion, then I think perhaps you missed the whole point of the comments from those who have been infected. Yes, I speak from personal experience. I too was diagnosed in late stage after suffering with undiagnosable “other” diseases and had pharmaceuticals shoved at me that merely covered up the symptoms of complaint for fifteen years. There is no known specific (publicized and approved) “cure”. That is the one of the problems that is being pointed out here over and over again. Our best hope is to be in remission and have some kind of break between treatments. As Maryn indicated, there are people who didn’t even know they were bitten, much less now carry the bacteria. I guarantee you that treatment does hurt. The number of antibiotics that are required to treat the numerous varieties of bacteria wreaks just as much havoc on a person’s body as the disease does itself. Yet, at least there is a light at the end of the tunnel when we are able to take forward steps with self-advocacy and the interest and assistance of an educated, genuine support system in the medical community. One other thing I feel compelled to point out is that there won’t even be a one-size-fits-all because it depends on which infections the tick was carrying when it interloped. It varies from person to person.

    1. This discussion has been a real awakening for me. I mentioned above I believe that I live in Texas. Veterinarians here have been working with, treating, and studying tick borne diseases for a minimum of 100 years, beginning with a disease in cattle called Texas Fever caused by Babesia bigemina carried, of course, by a tick.

      Since that early beginning, we have dealt with all of the various tickborne diseases with Lyme being the newest to us. I did not realize it was so difficult to find human medical doctors to treat these diseases or that it is so controversial. Battling all of these diseases is “old hat” for Texas veterinarians. Been there, done that…..many, many times in many, many animals. And if you spoke with my veterinary friends here, they would tell you the same thing. Tickborne diseases are a frequent topic on our professional online discussion sites.

  27. Maybe when the meat industry discovers how many consumers they are losing to the alpha-gal (mammal) allergy caused by ticks, there will be real interest in combating tick diseases. Perhaps they will then fund the research needed.

  28. Thank you for this comprehensive coverage.

    Relying on blood tests for a diagnosis is borderline negligent, as the tests are faulty and criminal charge sheets were delivered to the FDOJ regarding the falsification of testing and research fraud, plus a whiste blower exposed major issues with the vaccine called “Lymerix” which was actually causing Lyme-Disease-like illness in human trials.
    for more info, backed by reference material, please read this article:
    http://badlymeattitude.com/

  29. I have Lyme disease too. It’s very difficult to live with. I tried taking a job recently and it destroyed me. I’m in school now, so I can live on loans, but I’m not sure how I’ll support myself in the future, or pay off my loans, if I can’t work.

    I am confused as to why the CDC doesn’t recognize Chronic Lyme as a real condition. I understand that they argue that prolonged antibiotic treatment doesn’t improve the condition, but they conclude from this that the condition doesn’t exist? Strange.

    Plus, I’ve heard from many people that long-term antibiotics did help their condition. I just don’t understand.

  30. I was bitten by a tick as a teenager, and actually had to go to the doctor to have the tick’s head removed from my back. He never tested me for Lyme (I’m in California), but I have had strange unexplained fatigue and muscle soreness since then. It grew much worse after I gave birth, to the point it was hard to walk some days. I have been to many doctors, and was just diagnosed with Lyme a few months ago, after decades of searching. My immune system has been I overloaded, as have my adrenal glands, from the infection. I have had persistent chest pain and food allergies that are now all explained. So yes, the CDC trying to maintain that long term Lyme doesn’t exist is ludicrous. Finding this out earlier would have changed my life.

  31. Thanks for the article, Maryn. 30 years of Lyme (Borrelia) and co-infections with no cure to date, has devastated my health. I believe many of the “diseases de’jour” and their clusters of symptoms, reportedly with no “known” cause, are actually the result of pathogens like these stealthy bacteria that you write about. It’s very likely that most, if not all disease and disorders (with the exception of nutritional deficiency and physical trauma) are caused by bacterium, virus, parasites/pathogens or toxicity. These nasty invaders enjoy co-habitation in the body so that two or more of them may be present, causing life-threatening disease. We who suffer from these diseases with no real care from the medical community, look for treatment on our own. What we lack in formal education, we make up for in the experience of pain and losses that greatly motivate us. We’ve learned in part, that no one wants to live in a world where they could be so easily infected with such damning disease from a little bug bite. It’s more comforting to deny the data and ignore the writing on the wall. Like AIDS/HIV in the 80’s, it will require loss of lives and protests in order for the medical community to tell the truth. The epidemic is here! The CDC hides the data and IDSA (Infectious Disease Society of America) is a perpetrator of the lies and the keeper of secrets that are killing Americans every day. We unite to cry out for the wake-up call to fellow citizens for truth! Your children’s lives depend on it.

  32. I have been diagnosed with late stage Lyme, Babesia, and clinically diagnosed with Bartonella nealy two years ago. I tried oral, IV, and IM antibiotics, herbals, tons of supplements all to know avail. My insurance cut me off stating I.had received enough coverage despite still chronically ill. I turned to Bee Venom therapy and have done a 180° in just a matter of weeks, eliminating and decreasing nearly all my symptoms one by one. I follow the BVT for Lyme protocol, stinging 3x’s a week with honey bees using acupunture charts . It’s been nothing short of a miracle and I can expect full recovery if I continue to follow it’s duration. It has given me my life back as I once knew it and a total game changer. There are several bee venom therapy groups on FB that can help you learn more and you can read all the success stories for yourself. Apitherapy is definitely an alternative choice of treatment and not for all but I’m sure glad I it and continue to use this natural form of healing. It’s the most effective treatment I’ve tried to date and also the most cost effective. Maybe some day we’ll have a.vaccine but until then I have my bees 🙂

  33. When I showed by Dr initial symptoms and him “I think I have Lyme,” he relied on an inappropriate blood test, and trusted the false negative. This was in a Lyme hotspot in Maine 7 years ago. At my next appointment nine months later, I had late stage Lyme, swollen knees, and irregular heartbeat. Something is very, very wrong with the medical profession and this disease.

    I had to switch to an alternative-type doctor, and did six years of various antibiotics. I’ve done bee sting therapy for the past year, and so far that is working better than antibiotics, believe it or not. I’m doing pretty well, thankfully, but come on. What kind of health care system is this?

  34. Lymies…I would get all these tests…Western Blot for Borrelia, also test for Borrelia hermsii, Borrelia recurrentis, and Babesia duncani and microti and Quest can test for duncani, Bartonella henselae and quintana, Brucella, Tularemia, Coxiella burnetti or Q fever, many rickettsias ie Rocky Mountain Spotted Fever, Typhus, Ehrlichia chaffeensis, Anaplasma phagocytophilum, EBV, CMV, all Coxsackie viruses, and now Powassan virus and its cousin Deer Tick Virus, HSV 1 and 2, HHV 1-8 if available. Parvovirus B -19, Papillomaviruses, Toxoplasmosis, Chlamydias and Mycoplasmas and get genetic tests for hypercoagulation like Mthfr and Factor V leiden, and test all your IgG subclasses 1-4, and CD 57 and C3a and C4a and CBS mutations and HPU/KPU and mold testing since so many of us have issues with mold. ECP or eisonophil cationic protein seems to suggest to docs that you have babesia. Also transfer growth factor b-1 and Beta Strep. High CD 57 counts may be associated with Beta Strep. Heavy metals have a part in this and we are low in Secosteroid D or vitamin D and some are low in Potassium and others iron. Many are deficient in all amino acids. Our hormones are a mess and the whole HPA Hypothalmic pituitary axis is the problem. We can have probs with our adrenals and thryoid…we do not convert T4 to T3 and in my case I have high reverse T3 or rT3. We are quite low in testosterone as well. Check out every hormone in your body, amino acids and vitamins and minerals. There are over 100 viruses we can get from a tick and also many parasites. The labs that insurance covers can’t find a parasite when we can see it under the microscope. Quest at Nichols Institute in Valencia California can culture samples and might even be able to distinguish Brucella suis from melitensis or arbortus. We also need an MRI of our brain with and without contrast. Many lymies are showing up with pituitary adenomas and pheomchromocytomas. Make sure that you do not have these. I have spent years trying to figure out what is in us and so far this is what I have seen. Unfortunately when your physician may take years to order all the necessary tests. Make sure you get tested sooner rather than later. One more thing …..you may get tested for Brucella today and 2 years from now may show up IgM positive. The immune system is overwhelmed with all these pathogens.

    http://www.sophia.org/antidiuretic-hormone-adh-vasopressin-tutorial

    Whole HPA is a mess. ADH is not normal in lyme patients. We also need to be tested for all the opportunistic fungal infections of AIDS patients.

  35. My husband was diagnosed with Babesiosis 3 weeks ago. We believe he was infected about 2 months ago. Since he doesn’t have a spleen it has hit him hard. 100-102 fever, sever headache, weak. His reg. dr. originally put him on Doxi, thinking that it was Lymes. It took a week before the results came back and they switched his meds. The Ins. co wouldn’t give him the full dosage that was requested. He has seen a ID dr, who really didn’t tell him anything different than what I found on line. Because of Ins. he went almost a week before a second round of meds were ok’d. And not the full dose, it had to be cut in half other wise it would have not been paid for. It would have cost us 1200.00. The fever had gone down, but he is extremely weak, foggy and achy head. Hasn’t moved much except from the couch to the bed. Tonight his fever came back. Every Dr. that we’ve seen including the ER have treated this as if it is just the flu. Because of the denial for his full dosage of meds, I feel he isn’t getting the proper care. I think its keeping it at bay, but not clearing it. I know this can affect his heart and other organs. I am scared for him and so frustrated with the whole health care system.

  36. I am from Raleigh North Carolina. 2 years ago I found a tick on my stomach. I took it out and forgot about it. 2 weeks later I had a full blown red target on my stomach! Went to urgent care and immediately treated for Lyme. Three months ago I suddenly got ill. Fever nausea and very weak. It was the weekend so I waited til Monday to go to my dr. He treated me for pneumonia/bronchitis. That evening I felt a bump on my leg! A tick!! I called dr after hours services to ask if the tick could be the cause of my sudden sickness and I was told a dr would call me back . That didn’t happen and I forgot about it until a week later I was getting worse . Fever sweats weaker than before!!! I went to put water on my face and noticed a rash all over my chest arms sides and back. I rushed to urgent care. I told them the story and immediately blood work was drawn and I had Rocky mount spotted fever!! My lungs are now effected by this small lil tick. It took me 3 months to start to feel better not to mention the high doses of medication! This is scary and I no longer rake leaves nor walk in high grass etc. I noticed there aren’t any squirrels in my yard. I don’t know if it has to do with killer ticks or not!! Beware and be careful out there

  37. Angelika Robinson, please seek a second opinion for your husband ASAP. Asplenic patients with babesiosis are high-risk. He needs prolonged treatment and he needs it with coverage from your insurance company. It does not sound like your ID practitioner is competent to treat this.

    Our kids were near death and were rushed to the emergency room numerous times, endured PICC lines and implanted ports, oral and IV medications as well as herbal treatments and supplements over a number of years. They were misdiagnosed for longer, right here in the endemic state of New York.

    As a chairperson of our local Lyme support group, I am receiving a huge increase in calls and emails from people desperate for answers and support when their local primary care providers failed to treat their tick bites, under treated their tick bites, they did not see a tick bite but have late-stage Lyme, and/or were misdiagnosed due to conventional Lyme tests which miss up to 50% of true Lyme infections as well as due to many other failures in our medical system to adequately diagnose and treat tick-borne illnesses (see Angelika’s comment above).

    The burden on society is immeasurable. Kids not finishing high school, kids not attending college and adults too sick to fulfill their work and home obligations will take its toll.

    Incredibly, my children have not been counted by the CDC because they tested negative on the first part of the two-tier Lyme testing (ELISA) but positive on the second part, the Western Blot. The two-tier testing is what is recommended by the CDC, advising doctors to order testing with the Western Blot ONLY if the ELISA is positive first. Our county health department would not accept my children as cases. How many are also testing negative on the faulty ELISA, but do not know to insist on a Western Blot (preferably from Igenex Labs whose test includes all the Lyme-specific bands) and think they do not have Lyme when they really do? How many are not being counted by the CDC due to their restrictive criteria? How can people with positive Lyme Western Blots NOT be counted? It happened to my family, so I assume it is happening to other people. What, then, is the true number of cases?

    The US must acknowledge these diseases, study and develop more accurate tests, allocate funding for research and a cure, and allow citizens to use their insurance to cover treatments so they can return to some semblance of their former lives. The case above stated by Angelika Robinson is criminal. I hope she gets her husband to a new doctor!

  38. I would like to briefly touch on the % of individuals who never find a tick bite and go for years (some decades) without a proper diagnosis. The incredible number of misdiagnosis made, causing how much in false treatments and therapies is astounding.
    There is also a line item that NEEDS to be added for standard (not specialty) newborn blood screen and a prescreen for babesiosis for blood transfusions/donors.
    Nothing is being done to control the spread for people who have not been actually bitten. How is it possible for bacterial disease to show up in a newborn baby with such a wide-spread, preventable disease without precaution? Perhaps Lyme and it’s co-infections need to be scientifically categorized in a more profound manner.
    Thank you for a fact based article, Nat Geo. First one I’ve seen in a long time. It’s just the tip of the iceberg… and there are a lot of us under the cold water waiting for help.

  39. Have you noticed the recent increase in cost of doxycycline? Hmmm, very interesting that the main treatment for tick born diseases is now 20-30 times higher in cost than a few years ago. Drug companies are seeing increased awareness of tick born illnesses and raising their prices accordingly. My husband is a physician and he was shocked when a patient was unable to afford this treatment. It used to be an inexpensive method for treating these illnesses.

  40. Extremely ill for two years with undiagnosed Lyme and Bartonella. Have not been able to work. Lost everything. Almost died. Still not out of the woods. Had consulted with at least two dozen specialists, as well as my own PCP dozens of times, not to mention dozens of ER visits. No one could tell me why my health was failing so rapidly. Every test was coming back normal. Believe it or not, it was actually a paramedic who asked me if I had ever been evaluated for Lyme Disease. I looked at him like he was nuts. I went home that night and began researching it, and damn he was right on the money. He saved my life – I think. However, it took an additional four months to finally find a doctor competent and knowledgeable enough to diagnose me and start me on medications, and that he did. A lot of politics and controversy revolving around these diseases. Decades’ worth of lies, cover-ups, falsifying information and misleading the public headed by Allen Steere, Gary Wormser, the CDC and the IDSA. You mention Lyme Disease or Igenex to any mainstream doctor, and you are immediately met with harsh silence, and they abruptly change the subject. Lyme Disease is a rich man’s disease because the doctors who treat it charge large fees and do not take insurance, and many times insurance companies deny treatment. Treatment is usually years, with some degree of success if you are lucky. Most treatments are not covered by any insurance, or require supplements that need to be purchased out right. If you have a family who is able to give you or lend you the tens of thousands of dollars, many times upwards of a hundred thousand dollars or more, to find proper long-term treatment, you have half a chance of gaining back a part of your life as you once knew it. Many people sell vehicles, take second mortgages on their homes, sell their homes, sell priceless family heirlooms, anything they need to do. And for the majority of those infected who have lost everything and were forced to foreclose on their homes due to being unable to work and due to being denied disability, they remain sick with substandard care, until their immune system just tanks altogether. All it takes is a bout with the flu or pneumonia. Since these diseases are sexually transmitted and congenital, many times you have both parents and children who are extremely ill, and the children many times have Autism and developmental disabilities. Families do not realize these disease are sexually transmitted or congenital until it is too late, because again, it is all part of one giant cover-up. It is a mess. AIDS was a fraction of the health emergency that tick-borne diseases are today. And since I lived through the AIDS epidemic back in the 80’s, I can say that no AIDS patient I have ever known has ever been as maltreated and neglected by the medical community in the manner that Lyme Disease patients now are.

  41. I really don’t have the strength to write about all my 20+years living with Chronic Lyme. My opinion is the government, CDC and pharma are behind the delay of adequate research and funding. There are so many lies, discussions of how government used Lyme for research
    on bioterrorism at a prison, suppression of real facts of numbers infected, physician ignorance or fear of losing their medical license treating Lyme patients, you get to a point of giving up with the current treatments, supplements, food diets, living wiith 100 times more pain with the die off of spirochetes IF you are lucky enough to be prescribed Medical Marijuana that I feel personally can kill Lyme and some coinfections based on the severe level of afib and herxing that I experience. I cannot continue that form of treatment at the present time as my heart has afib from the die-off. My husband went through major open heart surgery and is not working, I can’t work outside of my home, we’re saving for The $1,000 first time local LLMD fee as I physically can’t handle the two hour one way drive to see Dr. H, knowing how much all the supplements will cost, how expensive the organic food will cost, can wear a Chronic Lyme patient to thoughts of suicide. I can’t think that way as fortunately I have pets that depend on me to take care of. All of my dogs have Lyme and we even lost a puppy to a horrible Lyme coinfection that I can’t even remember the name of. I pray to God the real facts are uncovered very soon to save the next generation as we all know this disease is more prevalent than Aids. I’m 64 and seriously doubt I will be able to live a normal life ever again but it’s not to late for our grandchildren if more public awareness is brought to light as Nat Geo has just done. Think… Why would the Government hold a patent on marijuana plants? I’ve personally been informed by government approved Medical Marijuana dispensaries of the miracles witnessed using cannabis stopping seizures, shrinking or killing cancer cells, experiencing such severe die-off of Lyme and/or coinfections, there is so much research that needs to happen 20 years. Why when I tried to gather a group of “Lymies” for an online support group that would be led by a Medical Marijuana researcher, was it not allowed to have medical pilots conducted in specific chat communities? I’m losing the fight. I’m down to 106 lbs, no appetite, stopped taking most of my 40 supplement and prescribed medications except my heart and high blood pressure prescriptions while I see such an uphill battle I am just not strong enough or have the will to fight anymore. What kind of life is it to be so dependent on narcotics to mask the daily pain I live with? Just another way of pharma keeping profits and dependence on their medications at an all time high.

  42. The treatment of Lyme disease in this country is woefully inadequate. Unfortunatley, the Primary Care providers feel like they need to follow the ISDA Guidelines for treatment, which are out of touch with reality, and therefore increase the risk of chronic Lyme infection.

    The physicians who do treat Lyme cannot participate with insurance companies, as the companies complain to the state Medical Boards, and their licenses are at risk.

    I was bitten by a tick 3 years ago, and developed an erythema migrans rash. After 3 weeks of doxycycline, I was still ill and returned to my PCP. I was told, “You have had your 3 weeks of antibiotics. You are going to feel lousy for awhile.” Well, it is now 3 years later, and I am still feeling lousy. I have had the typical joint, heart, nerve and brain problems, and am not able to work, although I have tried and failed.

    This makes no sense, as no studies have ever proven that 3 weeks of treatment is adequate to treat Lyme disease. In fact, 3 weeks of doxycycline treats many fewer life cycles of the Borrellia bacteria than standard treatments for other bacteria.

    For instance, in treating pneumonia caused by Strep, it is normally treated for 10 days. ISDA recommends treating Borrellia for about 3 weeks. Since Strep pneumonia has a doubling time of 20 to 30 minutes, and Borellia burgdorferi has a doubling time of 12 to 18 hours, the recommended treatment is less than 10% of the treatment time for Strep.
    How can this make sense to anyone, even without having studies done?

    Is it any wonder that about 20% of patients remain ill after the initial treatment? And why are they denied additional antibiotics by their Primary Care providers and most infectious disease doctors? Do they suppose it is better to wait until the infection is deeply established and will take years to eradicate if it can ever be eliminated? I don’t understand how doctors, who are supposedly interested in helping their patients, can be so unwilling to listen to patients and look at the facts.

  43. wow ….if the comment section for this article doesn’t scream for the writer to actually do some investigating before she writes her next story i don’t know what would. the only people that would be surprised about the information contained in this article are people who have not been paying attention. this is not a story its simply the regurgitation of false information the cdc has been passing off for years. clearly no effort was made to dig a little deeper. perhaps you could have contacted some lyme disease advocates or actually spoken with a few sufferers. this article does a great disservice to those who have fought long and hard to get the truth out there and it would have been so easy to focus on the facts if you had wanted to.

  44. I removed a Female lone star tick this morning. I read about them and the CDC says they do not transmit Lyme. They transmit other nasty stuff. I’m not sure I believe it. wondering what I should do.

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