What to do when you suspect Lyme

There have been a number of people approach me lately with suspicions that they or their loved one may be suffering from un-diagnosed Lyme Disease.
I decided to write a post on the steps to take if you suspect that someone you know may have contracted Lyme.

It is important to catch Lyme Disease in the earliest stages, within the first few weeks of infection. Often Lyme is missed at this stage because it so much mimics a regular flu and less than 50% of those infected with Lyme even recall a tick bite, let alone a rash!  There is much mis-information from public health agencies regarding infection, which further limits the number of people seeking medical help on suspicion of infection.  Only certain species of ticks are being tested for Lyme, although it is very likely that all ticks carry the infection, and it is even suspected that mosquitoes may also transmit the disease.

It is advisable, if you have been bitten by a tick and it is not easily brushed off of your body (meaning that it has been feeding on you for a while) and you experience a rash of any kind or feel unwell, that you contact your family doctor and request (or demand if they refuse your request) three-four weeks of oral antibiotics (usually Doxycycline).  Although the doctor may think this excessive, the alternative is to treat with a two week course of antibiotics (which is not sufficient to completely eradicate the bacteria at this stage) and risk being struck-down at a later date with late stage Lyme Disease.  If you have a strong immune system, the Lyme bacteria may remain dormant in your body for many years after initial infection.  The symptoms of late stage Lyme Disease may come on gradually or suddenly after an immune system compromise (illness, accident, stress).  It is much harder to diagnose at this stage, and much more difficult to treat.  It consists of much more severe symptoms and, although it may go into remission, is not considered curable.

A BULLS-EYE RASH IN ITSELF IS CONCLUSIVE OF INFECTION WITH LYME DISEASE.  IF YOU OR SOMEONE YOU LOVE HAS A RASH AFTER A TICK BITE, OR A POSSIBLE TICK BITE YOU MUST RECEIVE 3-4 WEEKS OF ANTIBIOTIC TREATMENT IMMEDIATELY.

You must also be aware that the testing method currently relied in Canada as an initial screening for Lyme Disease is a blood test that uses the ELISA method.  According to the International Lyme and Associated Diseases Society (ILADS) "The elisa screening test is unreliable. The test misses 35% of culture proven Lyme disease (only 65% sensitivity) and is unacceptable as the first step of a two-step screening protocol. By definition, a screening test should have at least 95% sensitivity". - See more at: http://www.ilads.org/lyme/about-lyme.php#sthash.jSJwyuSi.dpuf

Lyme disease has been called the great imitator.  It should always be considered as an alternative diagnosis of Fibromyalgia, Chronic Fatigue Syndrome as well as rheumatologic and neurologic conditions and any other difficult-to-diagnose multi-system illness.

So what to do if you have the symptoms of late stage Lyme Disease?

HOROWITZ QUESTIONAIRE  
Fill out the following quiz to assess the likelihood of Lyme:

http://lymeontario.com/wp-content/uploads/2015/03/Horowitz-Questionnaire.pdf

BLOODWORK 
If you score over 45, it would be wise to get bloodwork done at the IgeneX lab in California, as they specialize in Lyme testing and have developed tests that are more accurate than anything that is done in Canada.

http://www.igenex.com/Website/

You will have to fill out the bloodwork request form, and get your family doctor to sign it:

http://www.igenex.com/files/PATIENT_TEST_REQUEST_FORM.pdf

Then find a local lab to take the bloodwork (following the instructions on the IgeneX website for the specific tests that you are ordering)  I recommend that you do the Complete Lyme Panel – which is #6050

LYME LITERATE DOCTOR
If you scored high on the Horowitz questionnaire, you may like to consider beginning the process of finding a Lyme Literate Medical professional in your area.  When choosing a Lyme Doctor, you might want to consider the exchange rate (which will affect the cost of US treatments) as well as any medical insurance coverage that you may have (which may be covered if treated by a Lyme Literate Naturopathic Doctor – LLND - within Canada).  You will also want a physician that is ILADS (International Lyme and Associated Diseases Society) trained, as they follow the most current Lyme treatment protocols.  I can personally recommend Dr Maureen McShane in Plattsburgh NY, and Dr Eric Chan in Richmond, BC.  You can look on this website for the recommended list of LLMD’s closest to where you live:

http://ilads.org/ilads_media/physician-referral/