OMG, Have I Really Been Misdiagnosed for Ten Years?!
Doctors said I had hypothyroidism that evolved into Hashimoto’s Disease but I may have been misdiagnosed!
Labs sent to Germany confirm I’ve got low activity Lyme disease and a moderate activity form of Mono, which yes, is embarrassing but you deserve the truth.
Both Lyme and Mono can cause extreme fatigue.
I also have antibodies for six other (non-STD) common viruses and other tick-related viruses currently inactive.
Maybe now we’re getting somewhere.
I won’t know for sure if I truly have been misdiagnosed until I’ve been treated for both and slowly cut back on the meds I’ve been on for Hashimoto’s.
Fack.
Lyme Disease
To be fair, if it’s true I’ve been misdiagnosed for 10 years (!), symptoms can mimic or cause hypothyroidism aka fatigue, and a bunch of other stuff.
I live in and grew up in western Canada surrounded by forests I use to have the energy to hike in. I could’ve had 1000 ticks bite me.
Nope, you don’t always feel it, and less than 30% of the time does it leave any visual trace. (Probably less!)
Some ticks are as small as a poppy seed, the little buggers.
I’ve taken several rounds of antibiotics for gut bugs so maybe they helped reduce the Lyme activity.
Mono
Main symptom: extreme fatigue.
Fack.
Did I get it from a PG-13 episode with a guy I thought I liked back in 2016?
I liked him but really my life was stressful at the time—Mom dying, running out of money, not making any money, legal issues—looking back, he was likely a reprieve. (Be careful of damsels in distress!)
Perhaps it was payback the one kissing encounter (sans NC-17) in nine years could result in Mono a mia.
I mean, someone with Mono could’ve sneezed on me but that’s less likely.
Even kissing is dangerous now!
However, I have dormant and active markers so perhaps it was from a spit-swapping incident a long time ago and chronic stress reactivated it.
I’ve had chronic fatigue for over 10 years so maybe I’ve got yo-yo-mono!
(In which case, it’s entirely possible I gave the dude I kissed mono. #oops.)
Either way, misdiagnosed or not, Mono explains chronic fatigue; Lyme the gut, hormones, and other issues.
I’m relieved but not overly hopeful. Yet.
I’ve tested positive for many things along the way and been treated for many things along the way, so I’ll believe it when I feel it.
I have days with some energy and many with little to none.
No treatments have helped so far but if these two issues are the root cause then treating them should make a difference.
Lord, have mercy!
Also…
Hashimoto’s Disease
I’ve been on desiccated thyroid (compounded combo of T4 and T3) for over 10 years.
Studies suggest I may never have needed any thyroid medication at all if the Lyme and mono were diagnosed and treated at the beginning.
In fact, those same studies suggest that 30%-60% of people that show up with low thyroid markers end up naturally balancing within a few months.
Taking T3 when you don’t need it can eventually cause the body to develop antibodies against itself (read: Hashimoto’s).
Essentially, potentially, being misdiagnosed and put on the wrong—or any—thyroid medication 10 years ago may have created my immune compromised system that reactivated Lyme disease and Mono.
Nice. 😭
Meh, water under the bridge. (And about a hundred grand in alternative medical costs.)
So, my new doc just switched me to solo T4 at a lower dose to see if it reduces my Hashimoto’s markers that may be caused by the unnecessary extra T3 I’ve been taking for. 10. years.
(Note: I may not be remembering all the details exactly. #brainfog)
Doctors Know Nothing, John Snow
I had to ask to be checked for Lyme disease!
Traditional doctors kept wanting to put me on depression medication even though fatigue is my only related symptom.
I’m not depressed.
I know what depression feels like because I experienced depression in my 20s and for a time after my mom died.
I love life and want to live it! But I simply don’t have the energy.
However, I will credit my new doc for adding the other tests to the list or we may not have discovered the Mono.
But why the actual fack was I not checked for mono 10 years ago?
Did they think I’d never kissed someone, like ever??
Everyone knows Mono causes extreme fatigue.
Ok, true, I forgot it did, but I’m not a dang doctor… and… brain fog, people!
I’ve had several traditional and alternative doctors tell me Hashimoto’s disease is incurable.
I aim to prove them wrong.
Medical error (including being misdiagnosed) is the third leading cause of death.
So far the doctors’ batting average sucks.
Now, I’m putting my faith in my Heavenly Doctor…
Lord, let this be it! Let Lyme and Mono be the root cause. In Jesus’ name, amen.
P.S. Please let the treatments for them work. (Fast, if it’s not too much trouble, I’d like to go hiking again so I can get new tick bites.) Amen.
P.P.S. Also, let me have more energy to work and earn back some of that loot! In JC’s name, amen! (For real this time.)
What have I relearned?
- We must do our own research and be our own health advocates.
- Get a second option. Get a third or fourteenth even!
- Never give up. Never never.
Homework:
- Act as if I chose it. Might as well, God chose it as my path.
- Forgive the well-intending but ill-informed healthcare practitioners that helped mess up my body but gave me a lot of writing material.
- Be patient! Even if we’ve found the root cause, it may take months to feel better.
Signing off,
Silver Lining Girl
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