What is Lyme Disease?

Lyme Disease is a bacterial infection of the borrelia burgdorferi spirochete (that's a mouth full for the name of the bacteria and indicates the spiral, corkscrew shape of the bacteria itself).


Lyme sufferers get infected most commonly by the bite of an infected deer tick.  There are some talks about infection via a blood transfusion of infected blood (currently, donated blood is not screened for Lyme infection and since Lyme can lie dormant for weeks, month or even years, many infected people aren't aware they have the infection, increasing the chances that donated blood may be infected), and there is a possibility of infection by the bite of an infected mosquito or possibly through sexual transmission with an infected partner.  Lyme can also be transmitted from mother to baby in utero.  


*Here is a link to a collection of articles about infected blood transfusions:  http://www.lymeinfo.net/bloodtransfusions.html



Once the borrelia bacteria infects the blood, it also infects the organs - heart, lungs, brain, gall bladder, liver...you name it.  It can cause immediate effects or can go into hiding (the bacteria is very good at hiding behind this protective 'force field' called biofilm.  Jerks.)


The bacteria can assume 3 different forms, each with its own special way of burrowing deeper and hiding from treatment.  For more on this, go to:  http://www.lymebook.com/top10forms  (this book also has some great ideas on how to treat for Lyme, some better than others).


 Lyme is a very complicated disease.  For example, did you know that the Lyme bacteria has 133 strands of DNA?  Most bacteria have 7-9 strands.  Lyme is one. Smart. Bug.  If you really want to get into all that, watch the documentary 'Under Our Skin.'  It's on Netflix and tells you everything you need to know, more succinctly than I ever could.

What are the symptoms?
The symptoms of Lyme vary greatly from person to person, and depend on the growth and reproductive cycle of the bacteria.  (Like I said, Lyme is one smart bug)

Common symptoms include:

Headache
Nausea
Dizziness
Vertigo
Ringing in the ears
Hypersensitivity to sound
Hypersensitivity to light
Changes in sense of smell
Blurry vision
Joint pain
Lower back pain
Stiff neck
Debilitating fatigue
Insomnia
Hormone fluctuation
Stupor - when you walk into things because you're off-balance
Facial paralysis
Muscle twitching
Air hunger - when you feel out of breath, but you can get all the air you need, you just really need it
Dry eyes
Heart palpitations
Foggy brain - where you just can't think
Memory loss
Cognitive issues
Irritability
Anxiety
Rage
Disorientation - where you get lost in the same grocery store you've been going to for 10 years (and not because they switched everything around)

This is only a partial list and I have experienced all of these.  More potentially serious symptoms include seizure, stroke, and meningitis.    


 Because of the many different symptoms that may come and go, and vary per person, Lyme Disease is often called 'The Great Imitator,' and is very difficult to diagnose.  


On average, Lyme Disease patients see 10 MD's and spend $5,000 (not including cost of lab testing) before being diagnosed.  Many are told that they ought to see a psychiatrist and told that persistent Lyme does not exist.  To learn more about why this is and the Lyme Disease Controversy, read on:  http://www.waterwithlyme.blogspot.com/p/lyme-controversy.html

What about lab testing?
Unfortunately, testing for Lyme Disease is woefully inadequate.  The current standard Lyme Antibody Test (ELISA) will only test high enough to register a positive if you are tested between the 18th and 45th day after your infection began (because in this time period alone does your body create antibodies high enough in number to trigger a positive ELISA test).  Because Lyme Disease is so often misdiagnosed and so difficult to diagnose, it is rare that testing within this short time period will occur.  Even in cases when a positive occurs on the ELISA test, in many cases, your doctor will insist upon a second test called the Western Blot. Apparently interpretation of these results is a matter up for debate.  I was fortunate enough to avoid this testing circus and get an accurate test right from the get-go from Igenex.


The most reliable test is from a specialized testing facility that only tests for tick-borne diseases called Igenex.  Many Lyme Literate doctors will only consider tests from this lab company to be reliable - the 'gold standard' when it comes to accurate Lyme testing.  In my personal experience, I also paid to have my coinfections tested to get 2 false negatives - I was clinically diagnosed with Babesia and Bartonella, even though the coinfection test was negative.  (So I would skip the extra coinfection test if I were you, it is not yet as reliable as it ought to be).  Insurance will not cover this lab test since Igenex is not FDA-approved.  I discovered from my LLND that Igenex was denied approval because it produces 'too many positives.'  This really bothers me because - of course many of their tests will be positive - THAT many people have Lyme Disease, PLUS it is a $200 out-of-pocket expense.  I don't know many people who would pay $200 for a test if they didn't think there was a good chance it would be positive - the population being tested is already highly suspected for Lyme. For more information, visit www.igenex.com.  


My LLND did also inform me that very recently, a new test that cultures the borrelia has been developed and apparently it's a game-changer.  For more on this test, go to http://lymedisease.org/news/lymepolicywonk/811.html.


What about treatment?
Because of the chasm in the medical community about whether or not Lyme Disease persists after a 2-4 week course of antibiotics, how to treat Lyme Disease is the biggest question of all.  To fully understand this controversial question and to learn about what treatment can look like, read on: http://www.waterwithlyme.blogspot.com/p/lyme-controversy.html

Is it preventable?
Yes!  Prevent getting Lyme Disease by staying out of the deep woods and being meticulous  about checking for ticks.  Also be wary of any bug bite that does not go away as it should.  I probably got my Lyme from a mosquito bite in my backyard - I never got the bulls eye rash nor did I pick a tick off of me, but I did have a mosquito bite that didn't go away for 3 months!  The most important thing you can do is remind yourself of the early symptoms of Lyme Disease (joint pain, mono-like symptoms, fatigue, constant headache) - because if you get Lyme Disease, there can be 100% recovery, very simply, without going through much of the suffering - but only if you catch it right quick.  Because it's so hard to pinpoint right away (remember, most people see 10 MD's before they figure it out), YOU are your best bet for pinpointing it.  Seek care from an LLMD or LLND immediately if you suspect you may have Lyme Disease.  You're regular doctor's office will not know how to help, you MUST see a Lyme Literate Physician.  To find one, go here: http://www.lymedisease.org/resources/referrals.html 


Is there a cure?
Not likely - but don't fret.  Many, many people are walking around with Lyme Disease and don't even know it - it either remains completely dormant or it presents very mildly and their bodies can simply handle it without much suffering.  Because Lyme is so complex, it behaves differently in every single person it infects and there really is a large number of people who are A-ok.  Many people who do suffer from Lyme Disease, even advanced stages where they have seizures, recover and enjoy life as they normally did before.  My understanding is that the best case scenario a sufferer can get is a dormant, remission-type state with possible 'relapses' if your immune system gets hit hard by something.  There is definitely hope, as long as you are able to get adequate care - and therein lies a major battle.  


For more information, visit www.lymedisease.org, www.ilads.org,  or watch the documentary, Under Our Skin here:  http://www.hulu.com/watch/268761/under-our-skin.