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Photo by the CDC: Lyme Ticks

Lyme Disease: The Hidden Epidemic

Why is Lyme disease a hidden epidemic?  How many are walking around with a chronic illness and no diagnosis… going from doctor to doctor?  Many struggling with a mystery illness could be infected with Lyme and are completely unaware they have the disease. Lyme is the fastest growing vector-borne infectious disease in the United States.

Learn the truth about Lyme Disease, its symptoms and its causes below:

Lyme disease: causes

Lyme disease is caused by a spiral-shaped bacteria (spirochete) called Borrelia Burdorferi.  The spirochete can cause infection of multiple organs and produce a wide range of symptoms.  Lyme disease is transmitted by a bite of a tick and there is controversy regarding whether mosquitos and other insects can spread the disease.  

Early signs of lyme disease

General, early signs of the disease are bull’s eye rash (less than 50%), other rashes, and flu-like symptoms.  The disease can cause sweats, weight loss or weight gain, fatigue, hair loss, swollen glands, cardiac and pulmonary dysfunction,  gastrointestinal dysfunction, joint/muscle pain, Neurological symptoms, and Neuropsychiatric symptoms. Lyme is the fastest-growing vector-borne infectious disease in the United States. The CDC (Center for Disease Control) reports Lyme disease infects 300,000 people a year.  Lyme disease is a tremendous public health problem.  Did you know that 50% of patients with Lyme disease never recall a tick bite?

My symptoms with Lyme disease

My personal experience with Lyme disease began in November 2011, although I did not know it was Lyme disease at the time.  I remember distinctly the day the symptoms began to manifest.  I awakened one morning with severe fatigue, barely able to walk a few steps.  I recall my chest feeling heaving and I was short of breath.  I felt like I was coming down with a bad chest cold or the flu.  

I waited a week to see if my symptoms would improve before going to my Primary Care doctor.  After a week, my symptoms did not improve and sadly, over the months, I began to develop health issues in almost every system in my body.   I developed trouble swallowing, rashes on my chest and neck, rapid heartbeat, joint and muscle pain, bone pain, vision problems, low blood pressure, adrenal issues, hypothyroid, headaches, stiff neck, spinal pain, numbness, twitching, muscle weakness, swollen lymph nodes, hearing loss, and the list goes on.

After a year of doctor visits, dozens of trips to ER, and still no answers –I started to research the internet for answers.   After researching my symptoms, Lyme came up quite often under medical sites.  In the meantime, my Primary Care had referred me to see some specialists for my ongoing symptoms.  I decided to ask my PCP for a Lyme test … it seemed logical and I had almost every symptom.  I was shocked by my doctor’s response to Lyme testing. “Hey a good idea we haven’t done that yet.” I thought to myself, this is unbelievable; I had almost every symptom of Lyme disease except for bull’s eye rash and it never once crossed my Doctor’s mind to test for Lyme.  I left the office with some hope that I might get some answers.  Once again I was lead down the rabbit trail to see more specialists after receiving a negative Western Blot blood test.

Over the course of 3 years, I had seen over 16 specialists.  Now that I had the negative Western Blot test, I could not mention that my illness

might be Lyme because it was negative and they didn’t want to hear it.  After seeing all 16 specialists and extensive testing and scans not one of them could give me a diagnosis or a reason for my symptoms.  Each of the specialists began to suggest that my symptoms were somehow brought on by me creating them in my mind.  They began recommending seeing a Psychologist and doing yoga.  I would leave appoints to go to my car and cry with frustration…How could I do yoga when I can’t even comb my hair without  fatigue and can barely walk up steps?  Anxiety and depression medications were recommended but I refused them because deep down, I felt that there was a root cause for my illness, and it was not depression or anxiety. So I began to look into Lyme disease research again.  It was the one disease that fit me like a glove.

Always a Bull's eye rash? Think again.
Image on the left by MedicalNews Today

Lyme disease testing is not reliable

After much research, I discovered that Lab tests for Lyme disease are unreliable, and you can test negative and still have the disease.  Less than 50% of Lyme testing is reliable.  I also learned that the CDC criteria for Lyme disease were devised to track a narrow band of cases for the scientific study of infectious diseases and their causes.  After browsing CDC’s website I learned that Lyme testing criteria were never intended to be used as diagnostic criteria and were not meant to define the entire scope of the disease.  

These discoveries led me to go back and ask for a copy of my negative Western Blot test that was completed through my Primary Care.  I was surprised to find that I had a very significant positive IGM band on my blood work. This discovery led me to research the significance of the IGG and IGM bands on the Western Blot.  The positive IGM band 23 on my negative Western Blot confused me. Why did I have a positive band and a negative final result?

It was time for more research; I discovered that in order to have a positive Western Blot, I had to have 5 of 10 required significant IGG bands, and 2 of the required 3 significant IGM bands had to be positive for Lyme disease.  I learned that the positive IGM band 23 on my Western Blot showed that the outer surface protein C (OspC), specific for Borrelia Burgdorfei, was present in my blood.  Why was my positive IGM band 23 on the Western Blot tossed aside and not considered significant, considering all my symptoms?

Finding a Lyme-literate MD

After even more research, I decided to seek help through a Lyme Literate MD trained in the complexity of Lyme disease and who can adequately diagnose Lyme.  I completed a second Western Blot test through Ignex lab that revealed more positive bands and confirmed exposure to Lyme.  After meeting with LLMD I discovered that I also had 3 co-infections: Babesia, Erlichia, and Bartonella. Ticks can carry these co-infections along with Borrelia Burgdorferi.  I am currently under treatment and seeing improvement.

I’m sharing my personal story in hopes to bring awareness that Lyme disease and co-infections are being misdiagnosed, and I feel change needs to take place at a national level.  We need better testing criteria, better guidelines, and more research and training for physicians.  We need to teach doctors how to make a clinical diagnosis of Lyme disease after ruling out other diseases, supporting that diagnosis by finding borrelia-specific bands on the Western Blot, which show evidence of exposure. This would include finding the 23(OspC), 31(OspA), 34(OspB), 39, and 83-93 kDa bands on the Western Blot. If the patient has classic Lyme symptoms, physicians need to use their clinical judgment along with blood tests when diagnosing patients.  I believe that together, we can take a bite out of LYME!

This blog is dedicated to Stephen P. McNamara for his generous Kickstarter donation.

Main blog image by the CDC.

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10 Responses

  1. I am currently showing symptoms that I described as M.S. to my doctor. My neurologist decided to check for lyme disease. My lyme serology tested positive for lgm and negative for lgc. So she had a western blot done. Which came up negative but positive for band 23. Reading your article helped me understand what this could mean. Thank you.

    1. You are welcome — so glad it was helpful! Good luck with your healing/coping journey ♡

  2. I’m dealing with this exact issue. I’ve tested positive for band 23 Osp C on the Western Blot. Worse, I’m in Saltwater city and can’t seem to find an LLMD or a doctor that knows how to treat this. Its been just over a year of being very sick and I’m not sure where to turn next. I’m worried time is going by and need to get treatment ASAP. Any recommendations?

    Thanks Benson

    1. SO sorry to hear that! It feels so demoralizing to not find doctors willing or able to treat what we have. Have you reached out to Lyme support groups in your area to see if anyone has ideas? You can also join our Friends in the Fight group — not all of us have Lyme, but many do and might have ideas. You can also check out Generation Lyme, or Email our co-founder Emily ([email protected]) for more tips. Hang in there!

  3. Thank you Ariela! I’m part of Utah Lyme coalition on Facebook. There is some helpful info but still not alot of local help. I meant Salt Lake City. Also, my ELISA was postive, High 2.65. I’ll look at the groups you suggested. Thanks again!

  4. I was diagnosed with Lyme disease 5 years ago and was taking Antibiotics and Nonsteroidal anti-Inflammatory drug which seemed to help. However, I still suffer from some of the symptoms. My symptoms have always been chronic fatigue, joint pain, and even neurological problems in controlling hand and leg movements. I am a 54 year old female. the Antibiotics wasn’t really working and I could not tolerate them for long due to severe side effects, There has been little if any progress in finding a cure or reliable treatment. Acupuncture eased my anxiety a bit. Our primary physician recommended me to kycuyu health clinic and their amazing Lyme treatment. My symptoms including chronic fatigue, joint pain and rash, disappeared after 4 months treatment! The herbal treatment is a sensation.. My Lyme disease is totally reversed! this is a herbal store that will be leaving it’s footprint in this world. I’m 54 and have never been this healthier