My Runaround to get Diagnosed with Lyme 5


2 yrs diagnosedI was sick with a mystery illness for just over 1.5 years before I was able to properly get diagnosed with Lyme disease. (I was diagnosed with Lyme in December 2015.)

Before that I was misdiagnosed with fibromyalgia in February 2015 by my family physician. I had accepted his diagnosis at the time as it was the only answer I had, but as it never sat quite well with me, I continued on my own to keep digging for answers. If you know me well, you know that I research the hell out of everything – I like to know my stuff. (Apparently, doctors find this threatening…)

 

 

I had suspected Lyme disease since August of 2014 so this is the avenue I eventually pursued on my own (after exhausting all medical avenues here in Saskatoon) by contacting ILADS (International Lyme & Associated Diseases Society) to find a ‘Lyme Literate Doctor’ (LLD) in my area. Unfortunately, Saskatchewan does not have any; the closest LLD is in Calgary, so that’s where I went.

 

It gets confusing with all the doctors I saw and when (especially if you’ll be following my blog and reading “Le Novel” of my experiences when I get them posted). So I thought I would make a handy list that might help keep it straight. Yes, I love lists. You will too by the end of this 🙂 . Not all the doctors I have seen during my Lyme battle are described in the stories below; but here is the grand total:

Medical doctors: 16

Naturopathic doctors/practitioners: 4

Occupational therapists: 3

Other therapists: 3     (chiro, massage, acupuncture)

Other Support: 4        (counselling, etc)

 

I do not intend to name or attempt to harm the reputation of any doctor here in Saskatoon that ‘tried’ to help me, even though their attempt was an epic fail. I am sure they are more than competent when it comes to every medical aspect aside from Lyme. I don’t necessarily blame them; they are just following the direction of the College of Physicians & Health Canada.  (Think yellow minions who mean well but don’t always get it right. Oh, except they aren’t as cute. Or yellow. But I think I had a doctor with only one eye…)

 

Note: Actual names have been changed unless otherwise noted.

 

Dr. Unknown 1           (July 2014)

Was the emerg doctor at Shellbrooke Hospital (the hospital closest to Cowan Lake where I was taken by ambulance) when I first fell sick with severe flu-like symptoms & seizure-like shaking. I was in & out of consciousness during my stay and the memories are somewhat fuzzy, but I believe after ruling out pregnancy (!?!) the doctor figured I had a flu or viral infection that was worsened due to dehydration.

 

Dr. Sam           (July 2014 – August 2014)

Was the walk-in doctor at my regular clinic who I started seeing a few days after my hospitalization at Shellbrooke Hospital. During these first couple months, I was suspecting West Nile or MS. Dr. Sam took my complaints seriously and referred me right away to a specialist.

 

Dr. Unknown 2          (August 2014)

Was the emerg doctor who saw me at St. Paul’s Hospital in Saskatoon when I was ambulanced in from work. (I had another attack similar to the one I had at Cowan lake but without the vomiting). He was a very kind doctor & listened to everything I was experiencing but he chalked it up to a viral infection, which I didn’t buy.

Dr. Dummy          (September 2014 – November 2014)

Get lostWas the first specialist (Internal Medicine) I was referred to. I was sent to him as his wait-list was much shorter than a neurologist & he could order the same tests (like MRI). I asked Dr. Dummy for an MRI to test for MS, which he refused. He refused my request for a referral to a neurologist. By this time I had started suspecting Lyme disease so I requested a blood test. His response was “no bite, no test”. He also refused my request to see a gastroenterologist for my GERD and many GI issues, saying it was not necessary. He then diagnosed me with anemia (B12, Iron & Vitamin D deficiencies), thought he solved my problem & sent me on my merry way. He was very condescending during our appointments, and made me feel anxious about asking for help. I always had the feeling that he couldn’t wait to get rid of me as a patient. Overall, he treated me as though I were a silly little girl with a head full of nonsense. It was infuriating.

 

Dr. Ahole          (October 2014 – December 2015)

U crazyWas my family doctor of 7 years before I contracted Lyme (he is no longer my family doctor). He was away on holidays when I first became sick, which is why I had to see Dr. Sam. Dr. Ahole treated me very badly for the year I pleaded for help. I had to fight tooth & nail with him to get blood work requisitions & referrals to specialists. He rarely believed anything I told him; he accused me of not liking my job & just trying to get out of work; he tried to tell me I was merely depressed & continually tried to put me on antidepressants; and he also told me that my pain & my symptoms were all in my head. There were times I quite obviously got upset with him and he eventually treated me contemptuously. He finally  believed that I was being truthful in May 2015 when I nearly passed out in his office due to my symptoms suddenly flaring up (thank the Lord). He strongly suspected MS, and also decided to order a Lyme test (hooray!!! Only I didn’t know then that this test is completely unreliable). Only 3 days after this appointment I was hospitalized & a neurologist admitted me for 5 days. It was good timing (but why couldn’t this have happened sooner for the love of pete!).

 

Dr. Farquad          (April 2015)

Was a potential new family doctor when I was really struggling to get help from Dr. Ahole. But on my second appointment with Dr. Farquad he said he wasn’t going to help me “because I didn’t want to go to work”. (Doctors must get a lot of people trying to get out of work..??) He quite obviously got the axe….

 

Dr. Accent          (February 2015 – Present)

Is my current family doctor. I had originally seen him in February of 2015 for a second opinion & a fresh set of eyes. I wanted his opinion on the fibromyalgia diagnosis Dr. Ahole had just given me. Dr. Accent found that I had a thyroid problem, which had been normal two months prior in my December 2014 lab work. (Lyme often causes hypothyroidism). I asked him at that point in February to be my new family doctor, but he said he didn’t believe in fibromyalgia & that my case was too complex for him to take over. He agreed to see me only for my thyroid (with results copied to Dr. Ahole) as I felt that Dr. Ahole and I already had so much to discuss in our short 15 minute appointments. So that is the arrangement we had until I had him take over my file completely in December 2015 when I couldn’t take anymore emotional abuse from Dr. Ahole.

Just last month in January 2016 I told Dr, Accent of my Lyme diagnosis from my Calgary Lyme Literate Naturopathic Doctors. Unfortunately, he does not support my decision to see ND’s as “there is absolutely no science behind any of it”. He believes I should be relying strictly on western medicinal practices. As if western medicine has helped at all…. and I told him as much to no avail (sigh). But he has agreed to keep me as a patient and help me as best he can. Thumbs up.

 

Dr. Murdoch          (May 2015)

Is my eye doctor since I can remember (I used to wear glasses/contacts before I had laser eye surgery). When Dr. Ahole had finally believed that something was actually wrong with me, he had Dr. Murdoch examine my optical nerve for signs of MS (yikes!). Dr. Murdoch has seen many MS patients with optic neuritis & he assured me I did not have MS (phewf!).

 

Dr. Oz          (May 2015 & August 2015)

JokerWas the on-call neurologist who saw me in May 2015 when the ambulance took me in to RUH in Saskatoon (for my third hospital stay). She was wonderfully concerned for my health and was positive I had MS (gulp!). She vowed to help me no matter my diagnosis. She was my hero that night! Interestingly, it turns out she works at the same office as Dr. Dummy (whom she couldn’t believe ruled out MS without sending me for an MRI… duh, right?!). Unfortunately when I asked her about Lyme, she told me point blank that Lyme disease does not exist in Saskatchewan. Period. End of story. Not up for discussion. I had lost my hero (sob!).

 

Dr. Jackie          (May 2015)

Me getting a spinal tap.

Me getting a spinal tap.

Was the neurologist with a small army of residents who investigated my illness during my 5 day hospital stay at RUH. She was also wonderful & did everything she could to help. They ran a butt load of tests, including an MRI & spinal tap (holy grossness) but couldn’t come up with any answers for me. When I asked her about the possibility of Lyme, she also was of the notion that Lyme disease does not exist in Saskatchewan, Period. End of story. Not up for discussion (sob again!).

 

Dr. Russia          (June 2015 – November 2015)

Was the psychiatrist I was referred to by Dr. Ahole because he thought my symptoms were all in my head. He literally sent me to her because he thought I had a mental disorder. After a period of serious doubt that she could help me, it turned out that she became my only champion. She even wrote to my new family doctor (Dr. Accent) recommending I go to the leading neurologists at Harvard-based Massachusetts Hospital in Boston. (But even she didn’t think it was likely that I had Lyme.) Unfortunately, she ended her practice in Saskatoon in November 2015 to move to another province. She is unaware that I have Lyme disease.

 

Dr. Short          (July 2015 – Present)

Is the gastro specialist I started seeing after I had finally convinced Dr. Ahole to give me a referral. Guess what? Dr. Short also works at the same office as Dr. Dummy (who had refused to send me to a gastro), and Dr. Oz (neurologist). Weird hey? Dr. Short is a wonderful man and is still running tests to see if he can help me. When I had asked him in July 2015 about the possibility of getting tested for Lyme in the States he recommended against it. He is currently unaware that I have been diagnosed with Lyme disease.

 

Dr. Square          (September 2015)

Was the third neurologist I saw only to perform one final neuro test (nerve conduction). She is a very switched on woman & I liked her – but you guessed it – she doesn’t believe Lyme exists in Saskatchewan. She also recommended against going to the States for testing when I asked her about it. She told me that the treatment for Lyme is worse than the disease itself (really honey – you clearly ain’t never had Lyme…!).

 

Dr. Aisha & Dr. Taylor  (real names)          (November 2015 – Present)

Are the ILADS trained, Lyme Literate Naturopathic Doctors (ND’s) that I found on my own.  They work at Provital Health & Wellness in Calgary. At my first appointment in November 2015, they sent my blood to the Igenix lab in California. I received the results in December 2015, which came back positive on a “band” (strain of Lyme bacteria) that Health Canada & the American CDC do not test for. Along with my symptoms, they gave me a clinical diagnosis for Lyme disease & are currently treating me. (Dr. Taylor was on mat leave so Dr. Aisha sees her patients in the office & then later the two of them discuss every single patient. Talk about dedication to your cause. My heart swells!)

Shannon Flath  (real name)          (November 2014 – Present)

Is the Holistic Health Practitioner I saw in November 2014 & again in November 2015. She specializes in Live Blood Analysis and shows you what your blood looks like under a microscope. She was the first person to actually listen to all of my symptoms &  everything that was going wrong with my body. She was the only person at that time to treat me with dignity & compassion. At my first appointment, my blood was so riddled with bacteria & parasites that I burst into tears when I saw it. I could see with my own eyes how sick my body was. She helped rid my body of those nasties as well as food allergens that were worsening my mysterious symptoms. My second appointment (Nov 2015) showed that all my hard work paid off – I had very healthy looking blood and I felt some improvement since those early days. It was very gratifying to see positive results. I cannot thank her enough.

 

Sharon Neufeld (real name)          (October 2014 – Present)

StrengthIs my wonderful counsellor who has helped me though this battle. I started seeing Sharon when the stress of dealing with doctors and the unknown became completely unbearable. She shared my disbelief at how I was being treated by medical ‘professionals’. I was so grateful to have an unbiased professional tell me that I was sane & that my medical requests were completely reasonable & not out to lunch (you can’t help but doubt yourself after so many doctors slam the proverbial door in your face). Unfortunately I had to stop my sessions with her in July 2015 because I was so inundated with medical appointments; my decrepit body could barely keep up. Now that those appointments have slowed down somewhat I have been able to start seeing her again. There is still a lot of emotional baggage that needs sorting!

 

Tillie Dyck  (real name)          (January 2016)

Sharon Koenning  (real name)          (February 2016)

Are both Body Talk practitioners. I don’t fully understand the practice, but find it very intriguing. Tillie opened up emotional doors that I had purposefully closed or ignored, & helped me walk through doors I didn’t know existed. Sharon pointed out some medical symptoms I wasn’t fully aware of and I had an extremely strong emotional response following our session. I think Body Talk may be a useful tool in my physical & emotional recovery.

 

Dr. Amy Velichka  (real name)          (January 2016 – Present)

Is the Saskatoon-based Naturopathic Doctor that does my IV Therapy, which is part of my treatment plan overseen by Dr. Aisha/Dr. Taylor in Calgary. It is so nice to have a caring, supportive doctor in Saskatoon to help me. Especially since Dr. Accent pretty much said he won’t be helpful when it comes to anything to do with Lyme. Dr. Amy is awesome.

 

And there you have it, phewf! See why I made the list?!

 

And just think of all the people out there who have seen even more doctors than I have and how horribly they have been treated!! Unimaginable! No wonder so many of us Lymies need therapy…. More for dealing with mean doctors than the disease (see, I am a smart ass 😉 ). I believe that with the current upward swing of Lyme awareness there will be some breakthroughs about this illness and a lot of doctors will be feeling very foolish about their current behaviour.

 

Shameful handling

 


 


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5 thoughts on “My Runaround to get Diagnosed with Lyme

  • Helen Sewell

    Oh my dear ,dear girl , You have always been known to be a strong and spirited soul , but your story moved me so much it brought tears and a sense of disappointment in our doctors . It’s so sad that these doctors have taken an oath to help ,heal and save lives , can disregard your request with no concern .I am so very proud of you for fighting for the sick girl in you and coming out and proving to yourself you were right all along .It is a true inspiration to all how you faced every day with spirit ,faith and courage to get a diagnose ,as a matter of fact ,I strongly encourage you to tell your story to the Star Phoenix ,just the way you outlined your story here .No harm done , people and doctors need to educated themselves about this disease .I’ll pray for you for ongoing strength to heal in peace and tranquility with God by your side . Take all the time you need to rest , relax and recover .Get well soon ! With all my love . xoxo
    Aunty Helen

  • Jane Denis

    Marilyn, I feel so bad for you! What are the drs trying to do to people! Thank the good lord you stuck to your guns & kept searching for answers…..no Lyme disease in SK! I wonder if any of those drs ever stepped outside of the city….. the ticks out here are thick!!! I hope you have a full recovery & maybe see you at the lake this summer? We were at the lake when you has your initial episode, but didn’t know it was you!!! We were only a camper over & would have come to your aid if we’d have known. Anyway good luck & we will be praying for you as you recover! HUGS & be strong—-you already are a fighter!!!!

    • Marilyn Post author

      Thanks so much Jane! Isn’t that something that we were so close together when I first got sick and neither of us knew?! I am hoping to relax at the lake this summer with Mark & Ruth so I am sure to see you there 🙂