My Diagnosis Experience with Chronic Lyme Disease and Co-infections

I finally feel like I can write freely as to my condition.  I did not have a formal diagnosis until my appointment with my LLMD (Lyme Literate Medical Doctor) in the U.S. on Tuesday, June 30, 2015.

I have been a little evasive about my condition and what I thought I might have and details, as I didn’t want to jump the gun and say “I have this I have that” just to find out it isn’t true.

But here it is.  After a little over 3 years, I finally have a real diagnosis with HOPE TO GET BETTER:

Chronic Lyme Disease  Link for more info

Babesiosis  Link for more info

Human Ehrlichiosis due to Ehrlichia Chaffeensis  Link for more info

Human Anaplasmosis due to Anaplasma Phagocytophilum Link for more info

I kind of still sit here in front of my laptop screen and wonder where to begin, what to say, what to share….and I come up blank.  I promised myself I would track every step of the way for two reasons:

1.  To help others that are suffering and bring awareness to those who may not even know they were suffering (like me!)

2.  To track my journey from the beginning so that I can look back at this one day and remember what I went through.

So here I am trying my very best to sort through my cluttered mind and share as much information as possible.

Ok, so let me think back to that Tuesday afternoon.  The journey to get to my LLMD was a long drive for my mom and I and my body was screaming at me for it…but it had to be done.  We drove a total of 1400 kilometres (870 miles) to get to this appointment.  I tried my very best not to get my hopes up because I have been let down countless times by many many doctors and health care practitioners.

But we made it!  Even after the universe threw in a couple nasty roadblocks…including a huge For F350 side swiping our tiny little VW golf 2 hours prior to my appointment.  But luckily, we still got there, and without a scratch (I can’t say the same for my mom’s poor car) 😦

The office asks that you arrive 15 minutes prior to your appointment time.  We arrived about 30 minutes prior.  It is a homely looking office.  Very clean and well organized with lovely lovely staff.  The bungalow and its interior were extremely welcoming and did not make me feel exposed.  It felt very private and as though the staff truly cared about their patients (an experience that I am not used to!)

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My LLMD’s Office

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Office Surroundings

I first entered into the office and was greeted by S at the front.  She had me fill out some paperwork and consent forms and let me know that Nurse N would be out to get me shortly.  My mom and I sat in the waiting room (we were the last appointment of the day) and had a few minutes to check out some useful info posted on bulletin boards.

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Nurse N came to get me and took my vitals and went over patient history.  She was very knowledgeable and sympathetic.  She leaves the lights off in her office knowing that people who are unwell are sensitive to light.  🙂  She makes notes and goes over all of your paperwork that was filled out prior to the appointment.  (It was very useful that I took the time to fill this out as detailed as possible prior to my appointment).  I would also suggest that you bring all of your relevant medical records, past prescriptions and dates, etc.  (All of this information will be in your patient portal-an online record keeping of EVERYTHING to do with your treatment plan-I will touch more on this later)

Nurse N explained briefly about test results and was surprised when I actually tested positive for Babesia Duncani, Babesia FISH, Ehrlichia Chaffeensis, and Anaplasma Phagocytophilum on my co-infection panel.  She explained that many people do not test positive at first because their immune system is suppressed and is unable to produce the antibodies at the time.  The fact that I was testing positive was indicative of quite a high infection (but at least we know exactly what we are dealing with)

I was negative on my ELISA test (which is the ridiculous Canadian version of testing for Lyme-only 2 strains of it) and I tested a low positive for my Lyme Western blot tests with IGeneX, but “technically” negative as far as the test was concerned at this point.  (Again, this could change in time once my immune system gets stronger and is able to produce the antibodies).

After about an hour with Nurse N, she takes you into Dr. M’s office for your first visit.  This is where the real magic happens and where you feel like you just want to give her a great big hug (which I did) and say “Thank you for giving me hope and for believing I am really sick!  And for having a plan to treat my illness and not just my symptoms!”

I will write another post later going through my visit with Dr. M, the Patient Portal, My treatment plan (including exactly which prescription meds I am going to be on for the next three months) and herbals.

Now I am exhausted from this post and my mind is on overdrive.  I need a little break.

Here’s a little taste of SOME of my meds/herbals:

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