What is Lyme Disease?

Many of my conversations with people start off with them saying to me, "I have a silly question for you. What is Lyme Disease?" Oh goodness, that is by far the last thing from a silly question. Honestly, I didn't even know what it was until last summer when I diagnosed myself.  It is a hidden epidemic. You can definitely tell, however, the people who know what Lyme Disease is and those who don't.  People that know what this despicable disease truly is give me a face as if they just watched their dog get shot as I tell them what I have. That's because most of them have it or know someone closely that has it. 

The CDC, Centers of Disease Control and Prevention, and IDSA, Infectious Diseases Society of America, are not reliable sources of information because they over simplify Lyme Disease which is a much bigger issue. I get most of my information from ILADS, International Lyme and Associated Disease Society. 

What is Lyme Disease? 

Lyme Disease is a worldwide infectious disease carried by ticks.  Lyme Disease is caused by a spiral shaped bacteria, spirochete, called borrelia burgdorferi.  These bacteria can cause a wide range of symptoms, can cause infection in multiple organs, and is trying to shut the patient's body down. There are over 100 strands of borrelia in the US and over 300 in the world.  This is because of the variability of the spirochete, and its ability to invade the immune system.  

Testing for Lyme Disease

Lyme Disease is extremely difficult to diagnose because there are so much politics involved, blood testing is not accurate, we are taught if you get bit and have a rash see a doctor, and because it is a clinical diagnosis. Many people go misdiagnosed by either not being told what they have or being told it is something else (like Fibromyalgia, Multiple Sclerosis, Chronic Fatigue, Rheumatoid Arthritis, Lupus, anxiety, and a lot more). 

Between 15%- 50% of patients never remember having a tick bite.  Most people are taught to look for the rash, the bull's-eye rash. However, the truth is less than 40% of adults and 10% of children don't get or see a rash. Plus, the rash can look like a few different things; it doesn't have to be a bull's-eye. 

The main blood test done, ELISA, only tests for one strand of Lyme Disease. And like stated earlier there are over 100 strands in the US.  It misses 35% of people with Lyme Disease.  It is only 65% sensitivity and to be a screening test it should be at least 95% sensitivity.  Most insurance companies cover the ELSIA blood test.  Another blood test that can be done is the Western Blot which is a lot more accurate.  This test, however, is generally not covered by insurance.  Many people with Lyme still come up negative on this blood test because over time antibodies decrease.  Which is the main reason why Lyme Disease is a clinical diagnosis.  I was negative with the ELSIA and "grey" with the Western Blot. 

When testing for Lyme Disease there are co-infections that could be causing the symptoms as well.  When talking about Lyme Disease that is the borrelia bacteria.  A patient can just have that, have that and other co-infections, or just have other co-infections.  Some of the other co-infections that a patient should be tested for are babesia, anaplasma, ehrichia, and bartonella. Each of these affects the body differently.  

What is Chronic Lyme Disease?

Lyme Disease is often known as the "great imitator" because it mimics other conditions and is a complex disease. Due to this many people go on a wild goose chase of doctors for an accurate diagnosis.  Based on the statistics above of the tick bite, rash, and blood testing Lyme Disease is extremely difficult to diagnose.  Because of all of this people can go years without being properly treated (it took me about 22 years) and there once-was-Lyme-Disease becomes Chronic Lyme Disease.   

Symptoms

Lyme Disease symptoms can appear days, weeks, months or years after initial infection.  Here is a list of possible symptoms (I put a * by the ones I have). And these are not all of them:

Fatigue*

Low grade fevers, “hot flashes” or chills*

Night sweats*

Sore throat*

Swollen glands*

Stiff neck*

Migrating arthralgias, stiffness and frank arthritis*

Muscle pain*

Chest pain and palpitations*

Abdominal pain, nausea*

Diarrhea

Sleep disturbance*

Poor concentration and memory loss*

Irritability and mood swings*

Depression*

Back pain*

Blurred vision and eye pain*

Jaw pain*

Testicular/pelvic pain

Tinnitus (hearing noises in your ear when there are no outside noises)*

Vertigo*

Cranial nerve disturbance (facial numbness, pain, tingling, palsy or optic neuritis)*

Headaches*

Lightheaded*

Dizziness*

Pages 9 and 10 have a more descriptive list of symptoms if you want to check it out: http://www.ilads.org/files/burrascano_0905.pdf

Treatment

The CDC says something differently, but according to ILADS, International Lyme and Associated Disease Society, 2-4 weeks of antibiotics does not cure Chronic Lyme Disease.  There has been evidence showing that short courses of antibiotics does not kill off the spirochetes.  They are stubborn and go into hiding once they feel like they are being attacked.  There has been an upwards to 40% relapse rate of people that just take short courses of antibiotics. That's people with Lyme Disease and Chronic Lyme Disease.  The consistency of the borrelia and the return of symptoms show the need for longer treatment.  ILADS says that the consequences of untreated Chronic Lyme Disease far outweigh the possible consequences of long-term antibiotic therapy.  Most patients with Chronic Lyme Disease need to continue treatment until they are symptom-free and if a relapse happens they need to pick back up with the treatment.  There are no tests that show if a patient is cured of Lyme Disease or not.  

Simply, Lyme Disease should be treated for symptomatic presentations and should not be based primarily on a laboratory test.  If caught right away antibiotics should be used and if symptoms continue then a longer course of antibiotics should be used.  For people with Chronic Lyme Disease a longer course of antibiotics will be used for treatment.   

If a patient needs to be treated longer than 2-4 weeks they will more than likely have to find an LLMD. My LLMD has me on antibiotics, supplements, a diet and detoxing.  

Transmitted  

Lyme Disease can be transmitted many different ways.  The most known and accepted way is through ticks (about 9 different spices).  There is a lot of research and tests that indicate that Lyme Disease can also be transmitted through 6 species of mosquitoes, 13 species of mites, 15 species of flies, two species of fleas, and numerous domestic and wild animals like rabbits, birds and rodents.  Many LLMDs believe a child can get it through their mother (if she is a carrier) via the womb or breastfeeding.  You can be a carrier of Lyme and not have symptoms yet.  

More Info

If you want more information please let me know! Some really helpful resources are

 http://www.ilads.org/

and the documentary "Under Our Skin" - you can watch it on youtube http://www.youtube.com/movie?v=2JgR_Jfbhv8

I got all my information for this post from these two places. 

Energy Expelled: All together took 7 hours to write. That was spread out among 4 days. I wasn't feeling the best while writing this and my symptoms just got worse throughout. A fever, locked/stiff joints, migraine, severe ringing in the ears, nauseous, and blurry vision. When I was trying to reread it I repeated myself numerous times with the same word or phrases.  These research blogs are a lot harder on me. 

~ "When all around my soul gives way, He then is all my Hope and Stay."