Lyme Disease: The Great Masquerader

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Lyme disease is a bacterial infection caused by the bite of an infected black-legged tick, also known as a deer tick. Lyme and its numerous co-infections can mimic or cause virtually any medical, neurological, or psychiatric condition.

Known as the “great imitator,” Lyme has been vastly under-diagnosed in the United States due to inadequate testing methods and a general lack of acknowledgment by the medical community. A nasty relative of the sexually-transmitted disease, syphilis, Lyme causes a multitude of disorders, yet is much harder to cure.

People with Lyme disease have been misdiagnosed.

Some of these people have been misdiagnosed with a variety of neurological, psychiatric and medical conditions, including:

  • ADD
  • Anxiety
  • Arthritis (rheumatoid, reactive, infectious, juvenile, or osteo)
  • Bipolar disorder
  • Chronic fatigue syndrome
  • Depression
  • Early Alzheimer’s disease
  • Fibromyalgia
  • Irritable bowel syndrome
  • Lupus
  • Multiple sclerosis
  • Sleep disorders
  • Thyroid disease

Along with physiological symptoms like unexplained fevers, swollen glands, sore throat, headache, and joint pain or swelling, Lyme disease can cause the following common neuropsychological issues:

  • Impaired attention, focus, concentration, judgment and impulse control
  • Impaired memory and speech functions
  • Disorganization and getting lost
  • Poor problem-solving and decision-making abilities
  • Slower mental processing speed
  • Symptoms similar to dementia and Alzheimer’s disease

70% of those afflicted with Lyme disease report changes in their thinking, such as memory loss and reduced mental sharpness.

The fortunate ones are able to catch Lyme within the first few weeks when the appropriate antibiotics have a much better chance of working. Unfortunately, Lyme disease is often missed and the infection is allowed to take hold, disrupting the immune system and causing a cascade of inflammatory responses.

A tick bite is the best way to know whether you are at risk – however, one study showed that only 17% of those surveyed even recalled being bitten! Therefore, prevention is critical. Here are a few tips:

  1. Avoid walking through brush and high grass. When hiking in the woods, camping, gardening or mowing the lawn, wear long, light-colored clothing and tuck pant legs into tight-fitting socks. Remove clothes before coming back indoors, and wash and dry them separately.
  2. Shower as soon as possible after being outdoors, using a washcloth or loofah, and check your body carefully, especially in skin folds, for attached ticks. Remove ticks carefully with tweezers (without crushing) them by pulling gently and steadily near the mouth; then apply an antiseptic to the site

Lyme Disease Cases are Often Overlooked.

Thirty thousand cases of Lyme disease are reported by the Centers for Disease Control and Prevention each year. But because Lyme is often overlooked or misdiagnosed, the International Lyme and Associated Diseases Society estimates that the actual number of tick-borne illness cases each year is ten times that!

If you have any concerns about Lyme disease it is important to be evaluated right away, especially by a physician who is knowledgeable about this evasive but serious disease. Amen Clinics has several doctors with extensive experience diagnosing and treating Lyme disease, particularly the neuropsychological symptoms that Lyme disease can cause.

The first step in any healing process is an accurate diagnosis.

Call the Amen Clinics at 888-288-9834 to learn more about our Lyme literate physicians, or click here to ask a question and have someone contact you.

Amen Clinics

Amen Clinics

The Amen Clinics Method—developed through 26 years of clinical practice—uses a detailed clinical history, SPECT imaging to understand brain function, neuropsychological testing and laboratory studies to target treatment specifically to your brain using the least toxic, most effective means. If you are interested in learning more or to schedule an appointment, contact the Amen Clinics Care Center today at 888-288-9834 or contact us here.
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  • Jane Dickerson

    I believe it is 300,000 cases reported by the CDC each year (not 30,000) and the real number is at least 10 times that.

  • shelia in TX

    Just watched the award-winning documentary, UNDER OUR SKIN. Why? Because my doctor wants to test me for it! Also reading Dr. Richard Horowitz’s book, WHY CAN’T I GET BETTER? Both are Excellent!
    Thank you Dr. Amen for bringing more attention. It is considered a worldwide epidemic and up until now, has been politically and insurance company discounted to the point of witch-hunting doctors who speak the truth and treat patients successfully. Shameful and Disgusting!

  • Linda Woytassek

    Last June I was bit by a deer tick. Within a week I was running a fever, having severe headaches, severe muscle and joint pain and severe fatigue. At about 3 weeks post bite, I went to the doctor. Blood work was done and results were negative for Lyme disease. I developed check tightness and pain that took me back into the doctor. All tests showed nothing to cause the chest tightness and other symptoms that continued. I eventually started to recover, but it took several months. What I notice now is increased difficulty with learning and retaining new information. I just thought it was part of the aging process until I was reading your book then seen this article on Lyme disease. My question is…can a person have Lyme disease and not have it show positive on a blood test? I did not have a second test run. If my decrease in memory is related to Lyme disease, how do I treat it?

    • Sandi Duncan

      I was told you can get “false” negatives results but when you are positive you are positive. Also if I remember right the testing is “layered”-for lack of a better word. The first layer/stage I was negative but when the test was taken further/expanded that’s when the test showed positive. The only tick I remembered had been two years before. I have run into Doctors that will not believe I had been diagnosed even when I have a copy of the test results in my hand. I was told there had not been a case in my state but recently a young girl was finally diagnosed here…she had symptoms for 9 years undiagnosed. I just realized that is about the same time as my bite.You must find a medical place that actually believes in it & also knows how to correctly test so I am very interested in this article.

      • Charlton Bilow

        There is a good documentary on Netflix about this topic. According to the documentary, Doctors won’t diagnose it or focus their efforts on diagnosing it because insurance won’t pay out much for it. The medical board supports insurance on this topic believing that Lyme disease is an embellished issue.

        • Sandi Duncan

          I will try to check it out sometime. My situation as to being diagnosed backs your info up…I had diagnosis/treatment at my own expense!! $$$$$ Shameful!! people are not being diagnosed and treated. It can only get worse and lead to tests not getting to the right diagnosis. It is interesting that my husband just had a tick on his back (in Oklahoma) that I fully removed before it was engorged & fully alive. It left a nasty red raised large area (about 4 quarters laid side by side). Have never seen such a bad reaction to a tick. I encouraged him & he did go to the local doctor. I was amazed that doctor agreed to give him the antibiotic. I was so blessed to be tested & treated & could afford the Fibromyalgia & Fatigue Center in Denver before they were sold & their treatment protocol was done away with.

  • Sidney Steck Wendt

    I, too, was someone that tested negative for LD, but was quite sure based on my symptoms and that I had had a confirmed tick bite. Conventional Medicine and treatment of Lyme Disease is vastly un educated in the current protocols and treatment of it. Therefore, most of the timeand money spent in finding the diagnosis is about ruling out other possibilies. And especially if conventional blood tests give you a negative result, practitioners unfamiliar with treating LD, (most of the them) will automatically determine you don’t have it. Practitioners that are well educated in treating LD know to keep pursuing the diagnosis of LD, if you have had a known tick bite, and you are experiencing. Symptoms of LD. One of these Practictioners ordered an Igenix Labs test, that is highly specific to Lyme Disease and its coinfections. Mine came up positive, as I knew it would. After seeing I needed even more intensive treatment I went to the Amen Clinics, where I finally got support and acknowledgment that I wasn’t crazy for knowing I had it and they then went on to help be boost my immune system and educate me on how to improve my quality of life. Seeing in black and white, with the SPECT scans, it validated my suspicions that the !yme disease had done considerable damage to my body and most of all, my brain. You will read varying things online about the credibility of the Amen Clinics. I am living proof that they are legitimate and provided me not with not only a confirmed diagnosis, but realistic treatment and MOST of all, hope that my quality of life could improve. Post 4 months with the Amen Clinic, I have energy, motivation and the ability to think clearly for the first time in almost 2 years. I hope you will at least call a clinic near you, so you can get more informed and become. an advocate for yourself. If you don’t, no one else will. Best of luck to you and keep pursuing a solution that brings you hope and improvement in your quality of life. It’s out there, you just have to look REALLY, REALLY hard.

    • Dr. Daniel Amen

      Sidney – We are very happy to have been able to help you, and most of all that you are feeling so much better.

  • Lady Di

    I was infected and luckily caught the disease early. Western Blot test is critical in diagnosing Lyme. I insisted on the test as it is not approved by many insurance companies. But having a bullseye rash and severe immediate symptoms was key in my diagnosis. I highly recommend a 30 day regimen of doxycycline ASAP. I am so lucky to have caught this early. Pay attention to your body. Be aware of drastic changes: i.e. severe headache, back neck pain (nape area), joint pain, overall fatigue, low grade temperature. I also recall a feeling of water on my brain. My head felt swollen. When I moved my neck from left to right, I felt a sensation that my brain was following after I turned my head. I felt puffiness all over and very irritable.

  • Darleen Borden

    Have I got a story for you! My daughter brought home a stray cat that was found in a parking lot just after Xmas. Soon after I thought I had a new mole near my collar bone…a few days later it was gone. Weird I thought. I made a appointment with my Doctor because I was tired, just had knee surgery and it wasn’t getting better. She aspirated my knee in her office and gave me a steroid shot. Soon after, my dog ended up lame in her front leg out of no where, couldn’t use it at all. I rushed her to the vet at the same time examining behind my arm and seeing a tick very deep under my skin. I had never experienced a tick before. I was breaking out in a full body rash slowly and it was horrible! I had a low grade temp and I became VERY tired, very quickly. Back to my dog…at the vet they did blood work and I suggested a lyme disease test. It came back POSITIVE and they started my dog on doxycycline. Sadie turns 7 in May and she is doing great after a extended time on the antibiotic years ago. Well, in January of 2011, I saw my Doc again right away realizing my fever and fatigue could be lyme. I explained that my dog slept with me and that I know I had at least 3 deep tick bites. The one on the back of my arm I tried to get out but it turned into a bloody mess…I am sure I put all of the tick’s contents into my blood. My Doc listened to me, tested for lyme, which came back presumtive positive and she started me on doxycycline. I had a low grade temp from January to the end of May continuously. In February I was seen by 2 different Infectious Disease Docs. I was having crazy symptoms; the debilitating fatigue, blowing sensations on my lower legs and feet, I was feeling bugs crawling on me and I started to have a psychosis called, “delusional paraitosis”. I truly felt I had white fibers growing out of me and I cleaned my house top to bottom thinking everything was a bug. I almost killed myself, my dog and my kid with bug spray…seriously! I had a round rash on my hip but the rash was really head to toe! First ID Doc said, “there is no Lyme here in Kern County”. He told me to stop the Doxycycline because 2 weeks was enough. This man is a award winning ID Doc! I continued to have horrible fatigue, I couldn’t even dump the trash or walk to the mailbox. I asked my primary Doc to send me to someone else. The second ID Doc sat behind his desk and ordered Lyme tests and Valley Fever tests. I came back Cocci positive and was put on Fluconazole for about 2 months and continued on Doxycycline for a short time. I explained about my Dog and her positive Lyme and the tick bites and ID Doc #2 diagnosed all this as Valley Fever! So I suffer until May when finally, things subside and improve and I return to work as a RN in the NICU. I continue to have fevers every 2-6 months out of nowhere, I get chills and I think I am getting the flu but it is always gone by morning. The fevers are low-grade 100-101 degrees or so. I no longer have the psychosis that affected me after the tick bites. I look back at how crazy I was and realize, it was all part of the symptoms. I wonder and hope the Lyme is behind me but I know the steroid shot did me no favors before I started treatment and I know treatment was delayed at least a month. I do have lots of joint issues and a long standing headache that was diagnosed as hemicrania continua. I take indomethacin every day for this…if not then I end up in the ER with crushing head pain! Tell me all this isn’t related??? I wonder and hope that Lyme Disease will someday get the recognition and improved treatment that it deserves. So many out there suffering and the medical community, that I am apart of, doesn’t take Lyme Disease seriously!!!

    • JB

      Hi, did you ever go back to the doctor for your other symptoms? The night sweats are a telltale sign of Babesia. My 9-year-old daughter’s symptoms started after hiking all summer in SoCal and Mammoth. It started with flu-like symptoms then weakness/fatigue, migrating joint pain and high ANAs. A couple of months later she got strep and her joint pain, swelling got worse and she broke out in a horrible itchy rash and hives (which I now realize was a herx reaction to the amoxicillin). Plus she started having neuropsychiatric symptoms. She went nearly a year without a diagnosis and it’s a very long story but she had tons of odd symptoms. She had headaches, stomachaches, dizziness, feeling like she could not breath, migrating joint pain, random shooting/stinging pains, muscle pain (severe in the feet/legs)….the list goes on. She was hospitalized twice and misdiagnosed with Lupus and put on immunosuppressants (which made things worse) then a couple months later doctors said it was not Lupus but Somatoform Disorder (psychological). After nearly a year she was tested and finally diagnosed with PANDAS and Lyme Disease and after several months of treatment she was retested in November of last year. She tested CDC positive for Lyme, and positive for Babesia, Bartonella, Erlichia, and Mycoplasma. She’s finally on long-term treatment and getting better but she lost most of her 4th grade year and half of her fifth grade year and she has to take dozens of pills and supplements daily.

  • Karen Busselman

    I’m so grateful for Dr. Filidei and Dr. Farrell for referring me to him while I was being evaluated with PTSD and depression at your Costa Mesa Clinic! !!!! I thought I had early dementia! I’ve gotten my life back and more from their treatment and referrals suggested there. Ever grateful! !!!!!!

    • We are so happy to hear that you are feeling so much better. That is wonderful!

      • Karen Busselman

        Forgot to mention I was dx’d with Lyme Disease, and the treatment that Dr. Filidei prescribed helped so much!!

        • Thanks for letting us know! Dr. Filidei is really respected for his knowledge and treatment protocols.

        • Lana Rados

          Karen, what did your treatment for lyme consist of?

    • Dawn Arnone

      Karen that gives us hope, thanks

  • Dawn Arnone

    So the Amen Clinic can detect if there are infections or lyme in the brain? thanks Dawn

  • Cathy Hoag

    I wish the focus wood solely not be placed on ticks. I contracted it from mosquitos and it can be transmitted by any insect that bites you:(

  • Robert Winfree

    Glad to see this information, although I wish it had been out 15 years ago when we visited Amen clinic twice. Amen Clinic helped a lot to understand the neurology of the symptoms and with suggestions for patient management. Amen did not dismiss our case as psychosomatic or ‘”attention seeking behavior” (unlike Mayo Clinic and several others). Instead Amen Clinic showed us that there was something happening inside and gave us hope to keep searching for a treatable cause for our “chronic fatigue syndrome”. Dozens of other doctors had relied on inaccurate Lyme blood tests and ignored clinical symptoms before we found a few who were willing to treat on the basis of now-easily-recognized clinical symptoms. Our journey still took several more years before our case was correctly diagnosed, and it was nearly two decades before the infection was effectively treated with multiple long-term antibiotics for what proved to be co-infections of Lyme and related tick borne infections. We can only hope that more doctors become Lyme literate. Thank you Amen Clinic.

  • mtskier

    I’ve had tick related diseases at least 6 times. First time was camping in PA before lymes disease was known but I did have a bullseye and although I saw an NYC infectious disease doc I wasn’t correctly managed and was very ill for over one year due to lack of antibiotics with long-lasting implications. In addition to Lymes I’ve had erlichiosis, babesiosus as well as I think I had Tulmeria. I pulled off a tick that created an ulcer. I got the tick early and went on antibotics for 3 weeks within the week when I the got sick. But PA insisted it was a spider bite despite the fact that I told her I took off a tick there and had lymes like symtoms so I looked up possible diagnoses as this tick related disease was different and I came up with Tulmeria which is pretty scary actually. I then looked up if anyone in my area had been diagnosed with it and the previous year someone in my NJ county was diagnosed with Tulmeria the year before. I once went to a Lymes specialist who insisted that I not continue on antibiotics although I was having crushing chest pain and pins and needles everywhere. He wanted to give me Zoloft. I said that if he doesn’t give me more antibiotics I’m going to the hospital (which I should have done anyway) and finally he said he would but said he disagreed with it. One week later he called me and apologized because my lymes titer results were off the chart. I had to be on antibiotics 3 times for a month each – over a course of 4 months – before I got better because each time I went off the antibiotics I got more and different symptoms back – once losing my memory. I don’t listen to doctors now – I just get antibiotics and if they won’t continue the antibiotics for more than 2 weeks and I’m still very ill – I go to a different doctor. I’m not going through what I did in the 1980s as I got severe arthritis from it when I was 30!

  • Steven Litvak

    Western blot and elisa only detects Lyme disease in it’s earlier stages. You have to go to a Lymes specialty lab with chronic Lymes.

  • Gomer Wumphf

    My wife was diagnosed with Lyme about 9 years ago. She did not have a bulls eye rash and we don’t know how long she had LD before diagnosis. She had neurological symptoms and her neurologist tested her for several things and she showed positive for Lyme. She was treated with doxycycline and other antibiotics several times by a LD specialist over 3 years but continued to decline neurologically. She was also examined at the Columbia University Tick Borne Diseases Lab. About 4 years ago her neurologist diagnosed her as early onset Alzheimer’s likely resulting from Lyme. The Alzheimer’s diagnosis was based in PET imaging studies. She has been treated for Alzheimer’s for about 5 years and is now in the late stage of that disease.

    • Dina

      May I ask how old was your wife and when she began having neurological issues and Alzheimer’s onset & how old she is now?

      • Gomer Wumphf

        68. Her initial neurological symptoms started about 9 years ago. Her neurologist tested her for Alz and said it wasn’t that. She was then tested for Lyme and other things like exposure to heavy metals etc and only came up positive for Lyme.

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