a lone star tick on the end of a finger

In early July Jane Brody, a respected health journalist for the New York Times, wrote in her Personal Health column an article titled “When Lyme Disease Lasts and Lasts.” In it she described the case of Mary Rasenberger, a New York lawyer who has been suffering from chronic Lyme disease for a decade. Even though her test for Lyme came back negative, Ms. Rasenberger was eventually treated with antibiotics. According to Jane Brody:

…”after several months on antibiotics Ms. Rasenberger, like many similar patients, said she felt ‘completely healthy for the first time in years.’ Each time she tries to stop the medication, her debilitating symptoms return.”

Jane Brody goes on to say that this case is not unusual and that 10 to 15 percent of those who are treated for Lyme disease experience “persistent or recurrent symptoms of fatigue, musculoskeletal pain and cognitive complaints.”

Many infectious disease experts and other physicians have a hard time with this concept. They have been trained that a relatively short course of antibiotics should clear up any infection once and for all. The concept of “post-treatment Lyme disease syndrome” (PTLSD) doesn’t fit well with their understanding of infectious disease. They may describe such patients as hypochondriacs who are grasping at straws to explain their fatigue and depression.

Some doctors are quick to shoot the messenger. One critic of Jane Brody and the editors of the New York Times dismissed the idea that there is such a thing as chronic Lyme disease. He described this notion as nonsense that belongs in the conspiracy theory category. He went on to chastise the Times for even advancing the idea that Lyme disease could last and last for some people, especially if the test for Lyme is negative.

What has seemingly been ignored is that there are many different infectious organisms transmitted by ticks. A patient may have more than one infection, which complicates diagnosis and treatment even further. Here are some examples:

Anaplasmosis (Ixodes scapularis)

Babesiosis (Ixodes scapularis)

Bartonellosis (many different ticks, fleas & biting flies)

Borrelia burgdorferi [Lyme disease] (Ixodes scapularis)

Ehrlichiosis (Ambylomma americanum)

Powassan virus (Ixodes scapularis, Ixodes cookei or Ixodes marxi)

Rickettsiosis (Amblyomma maculatum)

Rocky Mountain Spotted Fever (Dermacentor variabilis, Dermacentor andersoni or Rhipicephalus sangunineus)

Southern Tick-Associated Rash Illness (STARI) (Ambylomma americanum)

Tickborne relapsing fever (TBRF)

Tularemia (Dermacentor variabilis, Dermacentor andersoni or Amblyomma americanum)

Until recently, doctors believed that Lyme disease was relatively uncommon. That was because the Centers for Disease Control and Prevention said that there were “only” about 20,000 to 30,000 cases annually in the U.S. Yet a few weeks ago, the CDC reversed course and admitted that Lyme disease is actually 10 times more prevalent and that at least 300,000 Americans come down with Lyme disease each year.

What the CDC doesn’t know is how many people contract bartonellosis, ehrlichiosis, STARI or tickborne relapsing fever, not to mention anaplasmosis or rickettsiosis.

Here are some stories from visitors to this website:

“I was bitten by a deer tick and then came down with Lyme Disease in Utah – out in the middle of the Great Salt Lake on Antelope Island that has lots of mice and deer.  I was playing with baby mice (I found their nest and had never seen baby mice before).

“The doctors told me I could not have it because there wasn’t any Lyme disease in Utah. They finally tested me for Lyme titer and it kept coming back higher and higher the longer they put off giving me some antibiotics.

“I made them give me copies of all the paperwork and all the tests–this was back in 1992! It was several months before I got help after feeling so terrible like I had the flu and was so tired.” Joan L.

“I live on the Eastern Shore of Virginia.  I had three kinds of tick disease and had to take lots of medicines.  The only decent doctor who acted like he cared was put out of his office.   So many people on the Eastern Shore of Virginia and Maryland have suffered while doctors wouldn’t treat then. Some got so sick their mate had to take them to Richmond.  No small feat because it’s 4 or 5 hours from the Eastern Shore of Virginia.  As you can tell I am miffed at the doctors who didn’t or wouldn’t treat people for Lyme disease.

“I had Lyme, babesiosis and ehrlichiosis.

“Thank you for listening and I hope this will improve to be a way of finding a better and easier cure then what we and our friends went through.  We also lost two dogs to Lyme disease.” Nina

“Joe and Terry, I’m sure you remember the case a few years ago of a western North Carolina doctor who treated patients for Lyme even though the medical establishment said they couldn’t have Lyme. He treated them successfully, but his license was pulled by the state.” P.P.

“The majority of physicians are NOT given correct information about Lyme Disease and its many co-infections.  I was misdiagnosed for more than fifteen years before I got the correct diagnoses of Lyme, babesia and bartonella.

“An infectious disease doc diagnosed Chronic Fatigue Syndrome in 1993.  Most docs are afraid to diagnose and treat Lyme because of the misinformed guidelines.  It’s a very political disease.

“People are told Lyme is hard to get and easy to treat…WRONG!! I have learned this and so much more since my correct diagnoses in 2008.” N.M.

“I listened to your show about bartonella shortly after hearing that a friend near Annapolis had been struggling with ever increasing rheumatic pain and fatigue. He had been making the diagnostic rounds which suggested that he might have Lyme disease or some auto immune condition. I called my friends this morning to alert them to Bartonella, only to hear that he’d had a saliva test which had just confirmed him positive for the bacterium.

“While a diagnosis isn’t a cure, I was pleased that mainstream medicine had picked up on it. I have forwarded my friends your podcast so that they can understand the scope of the problem and hear that there are doctors out there who are committed to finding the best treatment.

“You are an amazing resource. Thank you for all the information that you bring forward that helps all of us who hear you make more informed decisions about healthcare.” ASH

Anyone who would like to access our radio show, Ticks, Fleas & Mystery Disease about Bartonella and other Lyme co-infections, can listen to free bonus interviews with our guests, Edward Breitschwerdt, DVM and Robert Mozayeni, MD. They reveal some amazing insights about these conditions. We think you will discover that many of these tick-borne diseases are harder to diagnose and more complicated than many physicians realize. Share your own experience below.

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  1. Joe
    United States

    I have Lyme and coinfections and I find this discussion helpful. Thanks

  2. Dave S

    Thanks for the post, Joe and Terry, and for the comments, everyone else. My experience isn’t nearly as severe as some of yours, but it’s extremely persuasive, so I’ll add it here:
    Back in ’03, I camped overnight with several visiting friends by the Haw River in Chatham Co. NC. We picked a bad spot and some of us ended up pulling off at least a couple of ticks the next day. Oh well, right? Chatham County has ticks.
    Over the next couple of weeks, one friend, by then back home in Albuquerque, NM, developed an up-and-down fever, chills, etc., while another friend in Los Angeles also got sick, I believe with serious lethargy and other symptoms. Both eventually saw doctors; one was diagnosed with Rocky Mountain Spotted Fever, the other with BOTH Erlichiosis and tick-borne relapsing fever. They were both treated, and as far as I know, they’ve been okay since then.
    I thought I was in the clear. Then, a few months later, I noticed arthritic pain I’d never had before (I was 32) in the knuckles of both index fingers. Over several weeks, the pain and joint inflammation spread to all my other fingers, and soon I couldn’t hold a steering wheel.
    I told an MD friend and laboratory colleague of mine about the ticks, the friends, the symptoms, and asked him if I should get an official diagnosis. He rolled his eyes sympathetically, and said no doctor in North Carolina was likely to even test me for tick-borne illness, but that he believed me because he knew it was a real problem locally. He wrote me a script for Doxycycline right there, I filled it, I took it, and before I’d even finished the regimen (which I did), the symptoms were gone.
    Since then, I’ve been generally okay … I think … although I have had two different seemingly random arthritis flare-ups during the ten years since then, both while living in the Nevada desert and never so much as seeing a tick. Both episodes were not as bad as the first, and seemed to gradually go away by themselves.
    Incidentally, I’ve been back in Central NC for close to two years. After doing some yard work about a year ago, I pulled off two Lone Star ticks. Since then, I’ve had a few mild-to-moderate episodes of breaking out in hives after eating red meat. Then I came across this:
    …an NPR story on exactly this thing — induction of red meat allergies now being seen in those bitten by Lone Star ticks.
    ^#&*@$^&*#*!!! TICKS!!!
    Anyway, the meat allergy in this case isn’t the same (probably) as a lingering bacterial infection, but OH WOW, watch out for ticks in North Carolina. FOUR infections in three different people (plus a new allergy) caused by at least three (probably four) different organisms — after only *two* exposure events (the camping trip and the yard work) — is not “rare”, it’s completely insane!
    Wear DEET (at least a 23% solution). Check yourself for ticks and tick bites. Do the research yourself. If you’re bitten, don’t freak out, but don’t forget it. Keep an eye out for symptoms — apparently, there’s a shockingly good chance you’ll be hosting something nasty, possibly for a very long time afterward. You may never quite get rid of it, but you can treat it.
    By the way, this is all coming from a one-time career molecular biologist with a very skeptical attitude about what illnesses are real, and what’s a result of hypochondria, mass hysteria, etc… in other words, someone who never imagined, or cared to imagine, one day banging out a lengthy post on the insidious dangers of tick-borne illness.

  3. kjm

    Has anyone heard of any correlation between fibromyalgia and lyme disease…. Also, what symptoms does a dog present when possibly infected with Lymes disease. We have a dog who loves to go to camp… she is only 5 years old and now she can barely walk… she waddles and appears to be in pain all the time… Over a year 1/2 of vet visits and bills and no progress has been made…. Anyone have any ideas?

  4. RD

    I was diagnosed with Lymes several years ago. You can get Lymes anywhere but it is more prevalent in certain states. My daughter suggested going to her Naturalpathic doctor. I was going to a Rhuematologist for years because of constant pain, headaches, swelling, brain fog, etc. Most people do not see a bullseye rash. It doesn’t mean you don’t have Lymes disease. She did all kinds of testing and determined it was Rhuematoid Arthritis and Fibromyalgia. Made sense at the time but I told her that the symptoms didn’t add up and I was getting new symptoms on a daily basis. She told me I was in denial. She kept telling me what I was feeling. I told her I wasn’t feeling a lot of the symptoms she was describing. She told me I would eventually.
    To make a long story short, I stopped going to the Rhuematologist and went to the Naturalpathic doctor. The first thing she did was a Lyme’s test and it came up positive. They treated it with Doxycycline and treated me for many co-infections that go along with the Lymes. Best thing I ever did. They truly treat the whole person. The most important thing is:
    1. Have the Lymes test done at a place who specialize in Lymes testing.
    2. Do your own research.
    3. Be your own advocate.
    4. Lymes disease can mimic many other conditions such as Rhuematoid Arthritis, Fibromyalgia, MS etc. (Research it!)
    Good Luck!

  5. T Rasmussen

    I am a 51 year old outdoorsy,athletic woman and I have had Lyme, with at least one of coinfections (babesia), for 6 1/2 years. It took 3 1/2 years to get proper diagnosis. Was so happy to find what my problem was!
    Pulsed antibiotics saved my life. Was on a series of antibiotics for 3 years. But, gradually I was getting worse. Answer to prayer- Naturopath in Roswell, GA began a silver treatment on me. Rough at first and will be on and off for 6 months. But, slowly but surely getting my life back! It was nice to talk with Dr. Anderson and find out that he has treated MANY Lyme patients and they have gotten better.
    He has had some who come in with the improper diagnosis of Lou Gehrigs disease (when lyme all along!) and able to get them better. The Lyme patients with optic neuritis and blindness have gotten better! I have hope that one day I will be cleaning my own house, sprucing up my yard, enjoying long hikes/runs/mtn. biking on the mountain trails, slaloming on the lake, playing hard with my future grandchildren, and be able to plan activities beyond a day at a time! My heart go out to all my fellow “lymeys”. Keep on researching! Tell others your story so we can get the word out that Lyme is rampant in the US!

  6. JENN F.

    wow, you sound like quite the women! god bless and hope you feel better!

  7. Carol D.

    My husband was bitten by a tick in 2006. He was treated with 2 weeks of doxycycline, symptoms went away and we thought he was ok. It came back in 2009 and we didn’t know what it was. Antibody tests were negative. We live in Tennessee and doctors said he couldn’t possibly get Lyme here. He was told he had chronic fatigue syndrome, fibromyalgia, even male menopause. Finally, we found a doctor in Missouri who diagnosed and treated him. He has been on a variety of antibiotics for 3 1/2 years. He has been on injections for 1 1/2 years now and has made progress since adding L-arginine to his daily regimen. It is an amino acid with 4 nitrogen atoms that help break down the biofilms that the bacteria form. My husband has been told that he needed mental counseling because of anxiety in getting doctors to recognize and treat this disease. The mainstream medical community needs to wake up! We are making progress, but not out of the woods yet. Not giving up!

  8. CB

    I was bitten by a Tick in my country home New Paltz new york 1989 Had my own construction Co and was one of the only women in that business. All of a sudden I woke up to find I was so weak and the left side of my body was in pain. I lived in Manhattan and was diagnosed with 1) a stroke, 2) ms.
    It was only when I had a bad flare up at my house in New paltz, the local doctor sugested Lyme. Unfortuanately this was after six months and after having an MRI, and every test possible.
    I am sorry to say, that even though I entered the Lyme cliic and had three weeks of IV antbiotic, the pain and discomfort continued and I gave up working.
    Now 23 years latr and 80 years old, am in bed most of the time and try and enjopy the few hours of less pain. Luckily, found a wonderful Dr who understands all the weird symptoms that come and go and am saved by having my Kindle Fire, in bed with me, which keeps me in touch with the outside world.
    Until this disease I traveled went on safaris, did dog sledding, etc. But at 80 have resigned myself to a quiet life and am now not feeling guilty, when I cannot socialize.

  9. EF

    I have been on a number of different antibiotics and herbals pretty consistently for almost 4 years. My LLMD has changed my regime periodically so that the spirochets don’t get too complacent. Every time I have stopped my abx therapy within 2 weeks I begin to get sick.
    I have had unnecessary surgerys and tests after each test being told how healthy I was. Today I take 4 abx + herbs and feel pretty fatigued but good. I’ve had babesia for 20 years never originally treated and Lyme and bartonella for at least 6 if not longer.
    It was a combination of my health team that brought me to the place of knowing I should find LLMD and that tradional practices will only treat parts of the body at any given time never looking at the body holistically.

  10. V E

    My husband became very ill about 2 weeks after we found a tick imbedded for at least 48 hours. I took a picture of the “ring rash” and he began a 2 year-long hunt to try to find a Missouri doctor to believe his fatigue, dizziness etc. was tick bite related.
    We heard continually from a long stream of specialists that Lyme’s Disease cannot be contracted in MO. His primary doctor even sent him to get a psychiatric evaluation for his “hysterical, anxiety” symptoms.
    As he neared the point of having to take early retirement due to such severe fatigue, we were very relieved to find a specialist 2 hours away that diagnosed Master’s Disease, a form of Babeliosis found carried on a Midwest tick. After a full year of antibiotic treatment, he is feeling 98% better. It was 3 long years, and we are very disappointed with main-stream medicine. We are also grateful that we could afford to follow thru with all the treatment, as this is NOT a recognized disease; insurance would not pay for any of the very expensive medicines.

  11. N. Moore

    I am delighted to see this article shared by The People’s Pharmacy. It was only a couple of years ago that I posted on their forum regarding the false negatives of the ELISA Lyme test, Chronic Lyme, etc. and the response was basically repeating what the CDC/IDSA would say.
    Chronic Lyme Disease is real and people are dying from this very political and controversial disease. I was diagnosed in 1993 with Chronic Fatigue Syndrome by an Infectious Disease physician only to find out in 2008 (after my body gave out and I lost my twenty seven year teaching career) that I had Lyme along with two co-infections Babesia and Bartonella.
    If you have been diagnosed with any auto-immune disease chances are Lyme could be the culprit. This includes MS, Lupus, Fibromyalgia, CFS, ALS, Parkinson’s, and even Alzheimer’s. Check out http://www.Underourskin.com for more information.
    I would encourage you to research and find a Lyme Literate M.D. to treat you. They are extremely difficult to find because physicians who treat with long-term antibiotics risk losing their medical license due to IDSA guidelines. Also ILADS is the organization you want to trust for correct information instead of the IDSA or CDC. I believe the website is http://www.ILADS.org.

  12. D.M.

    My daughter was an undiagnosed Lyme victim for years starting when she was 11. That is when the severe migranes started, followed by stomach pains and more difficulty concentrating in school. This progressed into muscle aches and pains.
    We are military recipients and were told that the military does not recongnize that Lyme is a chronic issue so we turned to a Lyme specialist. After very many medications and supplements, she did not feel much better. A friend, who has Lyme, recommended we try a very unorthodox treatment that worked wonders for him. It is called Advanced Cell Training.
    We did and now at age 20, we can honestly say that she is almost 100% better. It is a miracle! She has more energy and is able to handle a full time job as well as going to night school. A feat that she would never have been able to do before the treatment. I highly recommend it to anyone with Lyme symptoms. Information about it in on the web.
    Good Luck and God bless.

  13. Kathryn

    Are other kinds of ticks carriers of these diseases? I lived in a wooded area of south east Virginia and had at least one bite a year, but not deer ticks. I have developed fibromyalgia and chronic fatigue. Could there be a connection?

  14. JJ

    I don’t understand why doctors would lose their license or be forced out of practice for treating Lyme disease. It is quite common to treat “off-label”, use a medication for a problem when that medication is NOT FDA approved for that particular condition. So why would a doctor lose a license for treating Lyme disease?? I do not doubt that it could happen, but why? Is it politics among the medical “establishment” –professional jealousy–what?

  15. Doug Ginno DVM

    I practiced Veterinary medicine in northern Ca. for 31 years. We are not supposed to be in a highly endemic area but usually diagnosed 3 – 6 cases/year. Dogs can exhibit either an acute and/or chronic form of the disease. Multiple signs can be associated with the disease: lethargy, fever, lymphadenopathy, nonseptic mono or polyarthritis, uveitis, endocarditis, neuropathies to name just a few. There is no guarantee that treatment will be effective. If diagnosed early a standard treatment consists of 3 weeks of doxycycline followed by 2 – 3 weeks of a cephalosporin. It’s been my experience that few M.D.’s are well-educated with respect to chronic infectious diseases other than internal medicine specialists. Dogs can be co-infected with other diseases such as Rocky Mtn spotted fever, Babesiosis, Bartonellosis, Ehrlichiosis, Leptospirosis plus others. Chronic Lyme sufferers whether they be human or canine have my sympathy.

  16. David D

    I have been suffering from chronic Lyme Disease since bitten by a tick in 2006. I was treated right away with Doxycycline for two weeks but it wasn’t long enough. It came back in 2009 with fatigue, muscle and joint pain, and memory problems. I live in Kingsport, Tennessee and was told I could not get Lyme Disease here. Antibody tests were negative. I was told by an infectious disease doctor it could be chronic fatigue syndrome, fibromyalgia, or male menopause. I had to go to Columbia, Missouri to get a diagnosis and treatment. I have been in treatment since April 2010. I have been on antibiotic injections for a year now and I am finally making progress since June when the doctor added L-arginine, an amino acid that has 4 nitrogen atoms which helps break down the biofilms that this bacteria forms. Most of the main stream medical profession is completely ignorant about this disease. We fight every day with doctors and insurance companies refusing to prescribe or cover the needed medications. I have even been told I needed mental counseling. If you have this disease, just do not give up the fight!

  17. JKC

    One disease that is caused by a bug bite-Malaria-is well known to affect the person and cause recurring problems often for a lifetime. If Malaria can do it, why not other diseases?

  18. Mary

    Betty, I am so very sorry to hear of the loss of your husband after his having contracted Lyme. It is a terrible tragedy that your husband was not able to obtain help sooner. Condolences to you.

  19. Terri G.

    After being sick for months, spent a few days in bed and then feel a little better, I went to my Dr. 3 times in June. He said I had a viral infection and should rest and take fluids.
    After the third visit the PA ordered bloodwork. I heard on July 4th that I was positive for Lyme Disease. Took Doxycycline for 21 days with 2 different pain killers. Now I have Lyme days at least once a week: pain, headache, chills, nausea, burning sensation, etc. This week I’ve been sick and in bed for 4 days.
    The Dr. prescribed Meloxicam once a day for the pain. Nothing helps.
    There needs to be research done on what can help we, who suffer from this illness. It is never cured……

  20. BA

    I have a long-standing anger at the medical profession concerning lyme disease! There are actually physicians in Connecticut where it was first discovered in 1975, that refuse to acknowledge it’s presence, refuse to test for it and refuse to treat it!
    Now that I live in SC, it is even harder. I have a friend who, after 4 years and 4 episodes of being diagnosed with “shingles,” (she had had the shot after the first illness that was classic shingles), finally this summer, was correctly diagnosed while on vacation in upstate NY. It’s unlikely that she will remain symptom free permanently, but so far, the drug-of-choice, Doxycycline, has worked!
    Why do M.D.’s think that they know it all??

  21. Betty France

    First my husband did not feel at all well, doctor wasn’t any help. Then he got terribly dizzy all the time. The doctor sent him to a hearing specialist. (Duhhhhh!) Then a neighbor came to visit and said “sounds like what I had. It was lyme disease.” We called clinic for request for testing for lyme and next morning it was confirmed: yes, lyme disease. A year later my brother was sick and dizzy, and his city doctor sent him to a hearing specialist. I scoffed and told them my husband’s story. They requested a lyme disease test and sure enough it was lyme disease.
    The lyme disease messed up my husband’s already bad health and he died.

  22. Dan M.

    When I got Lyme in 1990 the CDC was saying the actual cases were 10 to 12 times higher then reports. Them a few years later that bit of information disappeared from their web site. Only to return as something new.
    I am from Wilson NC and was told by many doctors that you could not get Lyme in North Caroline. I am still suffering from left over neurological issues.

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