Lyme Disease: Missed and Misdiagnosed

The-Truth-About-Lyme-Disease

We are experiencing an absolute epidemic of Lyme disease in the United States. Making things even worse is that many physicians don’t understand or deny that Lyme is so serious. It’s a tragedy!

Lyme disease was so-named because it was “discovered” in Lyme, CT. It is most common in New England, up and down the east coast, and the Midwest. But I’ve known individuals with Lyme who live in Texas, South America, Europe, and Asia. As I said, it’s an epidemic.

When we speak of Lyme disease, we mean not only Borrelia, the name of the Lyme organism itself, but many co-infections that infected individuals also have. These co-infections include Babesia, Bartonella, Brucella, Chlamydia, Ehrlichia, Mycoplasma, Rocky Mountain Spotted Fever, Tularemia, and a variety of viruses. You get Lyme by being bitten from a tiny deer tick, a tick so small that you can barely see it. Some individuals who are bitten by the deer tick may find the tick on their body or see a “bulls-eye” rash, but most people don’t find the tick and don’t have a rash.

Infections with Borrelia and its co-infections brethren typically have a gradual onset, often with a flu-like illness. People can have unexplained fevers or hot and cold spells. Memory, planning, reading, brain processing, and judgment may be impaired. In severe cases it can literally become impossible to string together words to make a sentence. Fatigue and exhaustion are common. Sleep problems—often severe—are almost invariably present. Headaches are common. Infected people are often moody and irritable. Individuals may have gastrointestinal disturbances. Sensitivity to sounds is increased, so that people can feel assaulted by the world around them. Light sensitivity is common. Bell’s palsy can occur—a mild or not so mild—one-sided facial drooping. In fact, in my opinion, Bell’s palsy is always due to Lyme disease until proven otherwise. Infected individuals can have erratic blood pressure changes or life-threatening changes in heart electrical rhythms. My experience, and that of others who are very familiar with Lyme, is that chronic fatigue syndrome and fibromyalgia are often caused by Lyme and co-infections.

What a list! The reality is that infection with Lyme and its co-infections can cause or contribute to virtually any medical, neurological, or psychiatric problems. As a psychiatrist, I’ve seen Lyme mimic ADD, anxiety disorders, depression and bipolar disorder, OCD, and schizophrenia. Sometimes, but not all of the time, when we treat the underlying infections, we see all of these “psychiatric” problems melt away. Lyme is also likely involved with ALC (Lou Gehrig’s disease), multiple sclerosis, autism, and various forms of dementia, including Alzheimer’s disease.

How do you make a Lyme diagnosis? Well, blood tests are fallible, so currently a diagnosis of Lyme is a clinical one. This is so important that it bears repeating: Lyme is a clinical diagnosis, made by a clinician with extensive experience with these infections. Individuals suspected of having Lyme should consult a “Lyme Literate Medical Doctor” (“LLMD”), typically a clinician who is a member of the leading organization for Lyme called ILADS (International Lyme and Associated Diseases Society, www.ilads.org).

As I’ve just explained, a diagnosis of Lyme and co-infections is made by an LLMD who takes a detailed clinical history, does a thorough physical exam, and orders appropriate laboratory testing.

Laboratory testing for Lyme leaves much to be desired. Let me explain why. Commonly-done testing by Quest or LabCorp, using the standard “Western Blot” testing, often gives a result that is a false-negative. That means that, if you get a negative result, you don’t know if you can trust it. Therefore, we commonly use specialty labs to try to diagnose Lyme such as IGeneX labs (www.igenex.com). IGeneX focuses solely on Lyme and co-infections, so they’ve become very good at detecting these illnesses. Even IGeneX testing is not perfect, but it typically is much better than most other labs.

What many don’t understand, and why Lyme testing with most labs is often worse than useless—because it can be misleading—is that CDC (the United States Centers for Disease Control) criteria for Lyme are based on surveillance criteria, not criteria for actual clinical diagnosis. This is a complicated, complex, politically-charged issue. I won’t go into all the nuances of this. Suffice it to say that even many doctors don’t understand that the so-called CDC criteria, upon which most testing (but not IGeneX and other specialty labs) is based, are not useful for making an actual clinical diagnosis in a patient, because of their high false negative rate. This has confused many doctors, who are not aware of the nuances of this diagnostic issue, resulting in many infected patients being told that they do not have Lyme when they actually do. It’s a real disaster, one of the most confusing and contentious issues I’ve seen in my many years as a physician, resulting in missed diagnoses and misdiagnosis. Often, struggling individuals end up being told that they have a psychiatric disorder because their physicians cannot figure out what is wrong. What a mess.

To make things even worse, physicians who are active in diagnosis and treating tick-borne infections like Lyme are being targeted by insurance companies and medical boards. Some have been forced out of medical practice and driven into bankruptcy. Their personal and professional lives have been ruined.

Lest I end by leaving you depressed and discouraged, let me say that help is available for Lyme and other tick-borne infections and there is reason for hope. Infected people can get better. There are courageous clinicians who are willing to diagnose and treat these patients the right way. But you must take matters into your own hands. Research your condition. Seek out clinicians who have experience. Ask questions and then ask more questions. You need to have a doctor who will spend time with you. The initial visit with a LLMD typically lasts about three hours. Is your doctor spending three hours with you? Probably not. Find one who will, and you’ll likely get better, which is what I’ve found with my daughter Elizabeth, who struggled for many years with Lyme, but who has improved markedly once we figured out what was wrong with her and found her the treatment she needed. Never give up hope!

The first step in any healing process is an accurate diagnosis. If you or someone you know may be experiencing symptoms of Lyme disease, call us today at (888) 288-9834 or visit our website to schedule visit and find out more about how we can help.

Joseph A. Annibali, M.D.

Joseph A. Annibali, M.D.

Chief Psychiatrist at Amen Clinics
Dr. Joseph A. Annibali graduated magna cum laude from the University of Pennsylvania, where he was a Senatorial Scholar, and from which he received an Honors award for studies in Biological Chemistry. Author of Reclaim Your Brain—How to Calm Your Thoughts, Heal Your Mind, and Bring Your Life Back Under Control
Joseph A. Annibali, M.D.

Latest posts by Joseph A. Annibali, M.D. (see all)

  • Amy E Mitchell

    I was bitten in May and am still being treated for infection. I had a red bump from the bite, which developed a rash after 5 days. Later I got Bell’s palsy. I got sick almost immediately with fever, sweating, and the worst headaches I have ever had. Even though my doctor started me on doxycycline less than a week after the bite, I still developed neuroborreliosis, the infection is in my brain. Every test was negative, even the ones from igen experience. Luckily I have a llmd who is treating me for Lyme anyway. It is a horrible infection to have!

    • Amy E Mitchell

      Autocorrect typo: that’s tests from igene x.

    • Cash Johnny

      Yes it is Amy, and I’m glad you have a LLMD…….keep at it….and my best to you

    • debabced

      My deleted video was dedicated to a woman who had gone to a lyme literate doctor with an ALS disease progression and it was the blood issues that killed her. She got back a huge amount of limb function from being on an antimalaria drug. I believe the babeosis, like malaria, is a blood pathogen. I think Dr Amen’s “brain and body power max” is one of the best nutritional supports to support the body to fight back, but I tend to think that if you developed neuroborreliosis you are dealing with co-infections and they can be blood and/or gut bad microbes. This is an excellent paper on how lyme messes up complement, de Taeye, Steven W., et al. “Complement evasion by Borrelia burgdorferi: it takes three to tango.” Trends in parasitology 29.3 (2013): 119-128. Notice it is in a journal called parasitology. I think people are suffering more because of inadequate attention to parasitic infection.

  • dath7

    Can Lyme affect joints? I have all the symptoms listed as well as crackling joints all over my body. Anybody aware of a doctor in Utah who treats Lyme? I was tested years ago but the result was negative-

    • Cash Johnny

      Yes Lyme itself can affect joints, normally the pain or such will jump from one place to another. However, I do not know your history of meds you may have taken for what…but any antibotics in the floride family such as Leviquin and Cipro….can damage and effect muscles and joints and the such, so be sure to check out why they black boxed that med…yet Doctors give it out like candy! Let me be clear, this info I mentioned is my personal experience…I’m not a Doctor. If you are in Utah, there may be a few ILADS….llmd doctors you can find, good luck to you ….negative and positive tests really mean nothing till “they” get some real accurate tests made. there is one but the FDA is holding it back due to Big Parm and greed…a woman by the name of Douglas is said to have a fool-proof test and it uses your urine!!! but then again, this is only my view from what I see happenin’ as a Lyme+ Victim.

      • debabced

        Leviquin has teleomere shorting properties which can be fatal. I study through the effects on the body with ALS and there is efficacy to improving lifespan with “stuff” that lengthens teleomeres. Some poor girl altered me to this enormously dangerous issue by asking who had tried Leviquin and she story was that her father had a non life threatening infection and was put on Leviquin and died 6 days later, but talked about how worse he was feeling as soon as he started taking the antibiotic. Teleomere lengthening is associated with living longer so Leviquin really seems like something to avoid.

    • You can find a Lyme literate physician here: http://ilads.org/ilads_media/physician-referral/

    • seagazer101

      Get tested again at the lab in Palo Alto, CA. igene x

  • debabced

    My sister has ALS. I made a video about it, https://www.youtube.com/watch?v=bb7KmiIs0Kc

    • Overcoming Lyme

      Thank you for sharing this video. It has a lot of technical information. For a layperson diagnosed with ALS but who may actually have lyme, what is the take-home message for treatment? thanks!

      • debabced

        I don’t know. I’ve seen so many die in the past year of “ALS” that had either tests for lyme co-infections, history of tick bites that do not test positive and basically no access to help or health services because they have “ALS.” An ALS progression lyme disease kills faster then people can figure out what do do to help.

        • debabced

          I didn’t delete my video… I have seen at least a dozen more with ALS test positive for lyme disease since this post. One thing that I have to say is I nailed it in identifying a huge problem with autoimmunity through complement with factor h and C4.

          I didn’t identify what the problem was in my video only that C4 and factor h were important, but I am pretty sure that one day my idea that you have to look at microbes through “complement eyes” and their overlapping evasion strategies will be at the forefront in what is taught in medical school and how they can collectively cripple complement. In the past month there is a fantastic paper on silent removal of dead cells, https://www.ncbi.nlm.nih.gov/pubmed/27782329. You need C4BP and factor h to regulate silent removal, so all of these microbes that I identified with factor h and C4 evasion strategies are totally destroying the body’s ability to regulate this process.

          Dr Blom’s work is exceptional, unfortunately the study of complement as an important body system for evaluation in disease is still in its infancy. I asked a new doctor how much he knew about complement and he really only knew about it, and no idea how to use it or how important integrating an understanding of it into his practice would enable him to give superior support to his patients.

          I am going to lunch with my biology professor from 30 years ago and I specifically asked how much the study of complement has moved forward in education as I was the top of my class in human biology and I swore I’d never heard of it. I went back and checked my text and it was just referred to a process the body uses to fight microbes in two lines of text in a book with over 1000 pages.

          So, how this paper translates into good health care practice is to identify various microbes that have factor h and C4BP evasion strategies. I think there is now a DNA panel test for a microbes that can show up in fibromyalga, and if I remember correctly, they have these evasion strategies.

          I just started to listen to an interview with Dr Gundry and lectin avoidance as this is probably also a piece of the healing solution. Dr Gundry was doing work with cross animal transplants to study autoimmunity and his knowledge from that kind of work is amazing. He talks about LPS of which there are bacterial kinds, and I suspect when the bacterial kinds are from bacterial that have these evasion strategies, the body is becoming overwhelmed in how to handle the problems.

  • Wendy Guess

    Thank you for sharing this. Probably one of the most inclusive articles on Lymes Disease I have read. I was diagnosed in 2000 with Lymes by a Naturpath Doctor and back then most physicians, if they even acknowledged its existence, denied that anyone could have it if they hadn’t visited Connecticut! My reply was, “tell that to my symptoms”! We focused treatment using holistic, nutritional therapies and had great sucess.

    • seagazer101

      I’d love to hear what therapies those were.

      • Wendy Guess

        Sure, the main activities that worked for me included consuming more alkaline foods, colloidal silver., and Transfer Factor. Since then, emotional/energetic therapies have been a tremendous benefit. What therapies have you heard about? Best wishes.

        • Carrie Toponce

          Yes! I detoxed as well using Dr. Hulda Clark’s protocol and her book, A Cure for all Diseases.

    • arco

      A common mistake but please be aware it is Lyme (no S) Disease. I cringe when I hear doctors mispronouncing it.

  • Gail Gravesntreter

    A good Lyme Blog that is informatinal as well as an account of one’s personal experience through Lyme treatment is willtherebecake.org

  • Cash Johnny

    There are many ways to look at it…I feel that I was murdered, just as my Mother was with the J&J Talc, yet she will never see justice on her behalf… Me, It was, I thought simple, back in 08′ I got bit by a very very small tick, but unlike most I found the tick and also got the bullseye… I went to an Urgent Care Doctor, I figured(wrong) that they are “up to date” on all the guidelines, treatments, needs…right? This Doctor as soon as he came in looked at me and stood away, had the nurse do all his work…Told me to just wait 6 months if any issues they’d take care of me. I thought that was a bit odd, I asked if there was anything we could do to be “sure” or “proactive”. Told me to come back in 6 months or just deal with my primary doctor. I then pulled out the tick in a container..the Doctor screamed “what is that!!” and backed up and hit the wall. I asked can this be tested to see if it has Lyme, cuz it’s been on me for I figure at least two days? The Doctor said, I suppose if you want us to…??? I felt this all to be very strange behavior. Well, they tested it, but never got back to me, I found out at least a month later it was positive, I ran to my Prime Doctor, he gave 14 days of doxy and seemed to care less. Then months later, I got tons of symptoms, too many to list. I went back to this place(only place in my area and took insurance) went to many “specialists” they all just wanted to treat the symptoms and have me go away, no care as to what the “cause” was…like Lyme and Co-infections. I then learned of a LLMD, I found one hours away…I went…I emptied my savings account, but the treatments where helping. After 4yrs I was in better shape, not perfect, but enough to function with simple things, plus flat broke. I was doing ok with the protocals on my own, then just last year I got a tick again behind my vein behind my knee, yes I do tick searches, yes with mirrors, yes by feel, yes for 30 mins every day to be sure. Well, I missed this tiny tiny one on the side of my vein. How did I know? How did I find it? Simple, I unlike many got the rash and a slight itch…I right away went to an IDSA Doctor, cuz insurance will cover and by now they will do the right thing….WRONG!….This guy came in with attitude, I’m gonna call him “guy” he does not deserve the tittle Doctor…This guy asks me how I expect him to treat me…??? I said well, that seems simple, I’ve got the tick here, and the rash and I’ve learned a few things about Lyme from a LLMD Doctor in the past. I’m the patient and you are the Doctor right? Just want to be treated as a patient with Lyme. this guy asks me well how do I do that? I’m like perhaps follow the National Clearing House Guidelines…???…?? This guy asks me if I have a copy of the guidelines in the med papers I brought with me…really?…I said yes I do, here they are…When he saw them he REFUSED to treat me per the Guidelines. He said he would only give me 21 days of Doxy and won’t be needing to see me again. I pointed and showed him the new Guidelines, he did not care…said go back to your LLMD, I said I can’t, I can’t afford him. This guy was like, that’s no my problem it’s yours. At the end of his so called 21 day Doxy with too little dose…I got severe Lyme Bells Palsy, I went back, due to the IDSA Doctor won’t see me, I was in Urgent care, they had fun doing all sorts of tests to rack up the insurance bill…..it all did NOTHING for me…The Doctor there felt sorry for me, gave me another 21 days at again too low a dose….These Doctors do NOT FOLLOW THEIR OATH…or the NEW GUIDELINES and insurance does not pick up if it’s chronic Lyme that “they” created by having me suffer….and perhaps soon die…..so…..is that not premediated murder? or is that undermedicated murder? This article is a VERY good article…it say’s alot……but what about the Millions of VICTIMS of Lyme+ with the same story or just as close to mine!!!!!????? I’ve gone to 30 some lawyers, and I’m not the sue type, they all felt bad for me, but said it’s too hard of a case for them, they don’t understand Lyme and it sounds too politcal…meanwhile I suffer bad each day…These Doctors are not even following protocal…they are not even within their OATH to a patient. If I’m to get better, the sad truth is, I need the money, so I can go back to the LLMD, so that I can be treated properly by a Doctor who takes his/her OATH seriously. Will this article STOP and help the millions like me? Will it prevent the numbers that CDC admits…close to a 1000 each week, each year WILL BECOME INFECTED!

    • skeeter1

      I agree,totally. Who’s out here to help us??? Especially those of us who can no longer hold a job. And can’t get disability

    • Laura Oviatt

      Your story is like a textbook ! We have gone through the same ordeal . For years doctors had me convinced that my child was crazy, anxious , depressed, add …ect. I will never recover from the guilt I feel for not trusting my own child. It was not until her body totally broke down and she was fainting ,loosing balance , sweating profusely , having Bells Palsy as she was driving her car down her entire left side, going from a college athlete to not being able to lift her arms or legs without severe pain, ….well the list goes on…. I just don’t understand why insurance company’s don’t help and traditional Doctors won’t acknowledge , they will actually laughing your face and role their eyes. I have never been a violent person,and I hate confrontation , but I have never wanted to choke someone so badly in my life! Sorry,.

      We have been fortunate enough to be able to afford to find treatment ,
      Which is helping ,slowly but surely . It is costing us our savings , but we are finally able to see the life come back into our child’s eyes. Worth every penny we have.

      Their has to be some way to lobby this , there are so may of us out there . The ones infected are to broken to fight , it’s the family and friends that are going to have to lead the charge

    • Amy E Mitchell

      You can buy doxycycline from MedsMex in Mexico and treat yourself. I know this is politically incorrect, but it is legal. Best if you can find a doctor because you probably need a multi antibiotic protocol and testing for coinfections, but I know how hard it can be. When you’re out of money, that’s it when these doctors and labs won’t take insurance.

  • Brenda Tippin

    I work for the Forest Service in Southwest Oregon. A few years ago, I lost a close friend and co-worker to Lyme. She suffered and deteriorated for about 8 or 9 years with several misdiagnoses, including Fibromyalgia, until she was completely bedridden and required a stomach tube. She died at only 52 years of age leaving a 10 year old daughter. The worst part was that Gail was sure she had Lyme and knew when she got it but her doctors would not believe her because the test came back negative. Finally at great effort and expense she traveled to another doctor in California who, with more lab tests confirmed she was correct and her problems had been due to Lyme the whole time. They started her on the right treatment but by then it was too late.

  • seagazer101

    Even though the article says this is most common on the East coast, I live as far West as you can go without falling into the Pacific Ocean – Where the redwoods are – and we have an epidemic of Lyme and all its accompanying co-infections. I’m told that it’s because we have way too many deer. However, I moved here from Sacramento, a city of paved streets, short grass, and virtually no deer, and I had the disease when I left there. Go figure. I never laid eyes on a tick of any description. Naturally it was not diagnosed until I was very sick, could not even remember the word for simple things like “door”. I was very afraid I had Alzheimer’s. I had already had to retire and go on SSDI because I could no longer perform my very complex job. While I did stumble upon a wonderful holistic doctor and received two full summers of IV antibiotic treatment so I can again carry on a conversation and read a book, I am far from cured, and my life has been destroyed. No one understands what I have gone through and continue to suffer. Now all my joints are going, from my thumbs to my ankles, and most of those in between, even though I’m not overweight and have never done heavy work or the kind of activities that usually cause those problems. This is a very good article, but I sure wish someone would develop a real cure for those of us who didn’t get the early warning signs Once the disease is chronic, we’re screwed.

    • skeeter1

      I’m in the same boat as you. It’s so hard.

    • Cathy Hoag

      That’s because people are so focused on tics:( I got it from mosquitos! ANY biting insect can transmit it…possibly even sexually transmitted!

  • LymeCoaching

    Yes, there is hope! Glad to hear your daughter is doing better. I recall a presentation you gave at ILADS a few years back where you discussed how Lyme caused inflammation in her brain- it made an impact. I hope her progress continues.

  • Kenneth P.

    Does Amen Clinics treat lyme, or just the psychological effects that come along with it?

    I wish more doctors had the insight into lyme and it’s many coinfections that Dr. Annibali seems to have based on his many posts regarding it.

    How do we get the IDSA, CDC, insurance companies and even doctors to wake up and take seriously this epidemic that is unfolding before our eyes.

    We have to do something. Even treated lyme can cause a lifetime of other issues if not treated promptly and effectively.

    Is Amen Clinics offering treatment for lyme disease?

  • Laura Oviatt

    I am having a real hard time with the cdc and traditional doctors / hospitals rejecting diagnosis from Igenix and biophysicists who have shown beyond doubt the existence of Babisia and Borrelia active and hiding in bio films in both of my children.
    We have actual footage of their cells as they die off and the spirochete emerges ,looking for a new host.

    What more do they need? We have spent thousands and thousands of dollars trying to heal our incredible children who have been misdiagnosed over 11 years .

    They should be out enjoying this wonderful life , now they are trying to work to pay for medical bills ! Living at home, as there peers are out starting careers and saving money for their futures.

    Sorry for rambling , but my heart is broken .
    Laura

  • Randy Umbs

    I’ve had it 3 times while surveying in NW Wisconsin. Doxycycline cleared it up before the worst of the symptoms set in. I’d always check my entire body for the bullseye rash, then immediately saw my doctor who immediately prescribed the treatment. It is very common in this region. We’d pull hundreds of ticks in a week.

  • arco

    A great booklet for info on Lyme and it’s associated diseases go to http://www.lymepa.org. Download the green “lyme basic” booklet.
    Another info site is http://www.ilads.org (the international lyme and associated diseases society) The education page has numerous articles..

  • Carrie Toponce

    Google: “Consumer Health Donald Scott June 2000 Chemtrails and the new Mycotoxins.” This is why sufferers including myself are unable to get a diagnosis. In addition, YouTube Dr. Garth Nicolson’s presentations. It took me a few years of literally fighting for my life alone to discover what I have. Best to all.

  • Michelle Frankie

    you guys I got well with Dr Rawls. Vital Plan ..it took eight months and i was misdiagnosed for 20 years..and Im almost totally back its amazing xoxox

  • Tanya Dixon

    Thank. You. This is my current status. Finally, someone understands. Finally.

  • Cathy Hoag

    Great article, but PLEASE spread the truth that it is not ONLY spread by tics! It is spread by ALL biting insects such as mosquitos, fleas, mites, bed bugs, biting flies…and more! It is also spread to unborn babies by infected mom…blood transfusions and possibly sex!

    • Amen Clinics

      Hi Cathy,

      The spread by other insect vectors is highly likely but poorly documented. Borrelia, for instance, has been found in mosquitos and other biting insects as well, but the transmissibility is less well known and probably a different disease process if you get Lyme from another insect. It turns out that the tick saliva plays a role in the infection process and is actually signal to the spirochete, as ticks are still the main life cycle host.

      The maternal-fetal transfer has been documented, as well as sexual transmission between couples, although the latter remains controversial.

  • Murray Duffin

    It goes way beyond Lyme. Lyme is caused (mainly) by one kind of spirochete, but there are more than 30 species, and at least 6 species have been found in brain autopsies. Spirochetes are usually transmitted by insect bites, but can probably even be transmitted by kissing as several species live in otherwise healthy mouths. Dogs can be carriers and flea or mosquito bites are even more problematic than ticks. If you have worries about Lyme misdiagnosis research “spirochetes”.
    Early references in medical literature, including Alzheimer’s research, go back a century. An excellent meta-analysis paper was published in 2011. See https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3171359/ . Several advanced papers have been published in 2014/5/6.
    I’m amazed that Amen Clinics seem to have missed the boat on this one. Time to catch up!

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