***Warning: Long Post***
The Monday after Thanksgiving last year, I was diagnosed with Lyme Disease (aka The Great Imitator). It was both a relief and a fear of the unknown. I’ve decided to share my story in hopes that it prevents others from getting it as it is preventable.
It was a relief as I finally knew why I was so tired and having problems concentrating (two of the symptoms). And the fear factor was – I had no idea when I got it and how long I’ve had it (which is scary considering the longer I’ve had it the more likely for long-term effects). As my brother stated when I told him – “It isn’t as if you are a hiker”. I’m really not an outdoorsy person anymore – I much prefer a nice hotel with a spa vs. camping (been there done that as a Girl Scout). Additionally, I never had the tell-tale bullseye rash and I found out that 40% of the people diagnosed with Lyme Disease never get it.
As I sit back and look at 2012 – when did I get it? – I’m starting to pinpoint sometime in the summer (time will tell). I originally thought I’ve had it since the Spring, but the more and more tests I get done for other things the more I think I got it the end of May or June.
I started seeing my nutritionist in May 2012 and I remember going back a month later complaining about being tired – so exhausted all I could do when I was finished with work was sleep for an hour or so. It wasn’t every day so we both thought it was adding sandwiches with real bread not sprouted back to my lunch of choice. As I look back on it now – it makes me wonder if I was feeling the effects of Lyme. I seemed to feel better in July but I was also on vacation for two weeks – although I do recall not really staying up late and sleeping in a little more. Fall was just plain crazy both work and personally – I went to 5 PSU home games – 4 of which I stayed the whole weekend up there. As I look back, I did keep those crazy college hours though (a change from the past). And work was just super busy working on 2013 planning. And I was TIRED!
So how did I ultimately find out I had Lyme Disease? I had a 4 month follow-up with my Doctor (I saw her in July and all my blood work was normal – no lyme test though) (which is also why I think I may not have gotten it until the summer) the Monday before Thanksgiving. I planned on talking to her about how tired I was – just the day before I had breakfast with my extended and family and all I could do on Sunday was sleep on the couch (and I don’t mean a nap – full blown exhaustion). I honestly thought it was thyroid related – due to being tired and my ongoing struggle losing weight. Test results = no thyroid issue. Although some of my other numbers spiked and by quite a lot (this is why I think I got somewhere between June and November). It still didn’t explain my exhaustion. The comment I received was for me to just make myself get up and move around (and honestly that ticked me off as I was still working out). So I pushed and explained what happened the day before. Reluctantly (and I truly believe this) she wrote out a script for more lab work. I didn’t have to fast so I could get it done very quickly. I went the Wednesday before Thanksgiving. I knew one test was for a Vitamin B deficiency and I had figured out one was for Lupus. I put the test out of my mind for the remainder of the Thanksgiving holiday – until Monday morning. Bottomline – you know your body better than anyone else – keep pushing your Doctor for the answers!
Monday morning I was anxious. I made the mistake of getting on WebMD – I was searching my symptoms and Lupus kept popping up. I was SCARED. Monday afternoon, I received a phone from the Doctor’s office to schedule an appointment for the next day. The assistant could hear the anxiety in my voice – she asked me if I wanted to know what I had – of course I said YES – I just couldn’t wait! She told me I had Lyme Disease and I whooped with relief since it wasn’t Lupus.
I had heard of Lyme Disease, knew you got it from a deer tick (virtually impossible to see), but never really knew what it entailed. And did not know it was an Auto Immune disease that will stay with me the rest of my life. So for the next 30 days I took 500 mg of antibiotics 3 times a day. I know the saying goes the ‘cure is in the last dosage’ and I can tell you I was hoping for that, because midway through my treatment (the day after Christmas – and it was a laid back Christmas) – I was exhausted. I love doing things with my extended family and I had to pass that day. In my opinion, the cure wasn’t in the last dose.
I don’t recall the exact date, but I remember waking up one day and I was like – WOW – I feel normal. But I’ve also noticed that if I stay out late (sans adult beverages too) – I’m beat for the next two days – that just isn’t normal. I’m hoping this is like mono (yes I’ve had that before too) and it will run its course. I’ve done some research of late on Lyme Disease and it is just scary what it can do to you long term if left untreated. I’m fairly confident mine was caught early. I go back to my Doctor’s this Monday to find out my blood work and there was an additional test added for Lyme Disease. Fingers crossed the levels are low!
So why the super long post – AWARENESS! May is Lyme Disease Awareness Month! It is all about PREVENTION: http://www.cdc.gov/lyme/ or http://www.lymedisease.org/lyme101/prevention/lyme_prevention.html as there isn’t a lot of understanding or support on the long term effects of Lyme Disease by the Health Care Industry (I’ve read how the later stages (where it wasn’t caught soon enough) and it is debilitating). So please be extra careful this spring, summer and fall since we did not have a very cold winter – there are a lot more deer ticks since they weren’t killed off with the cold.
I really do think mine was caught in time; however, seeing my results on Monday will help reassure me! 🙂 And I hope this post was helpful in preventing you or your family contracting Lyme Disease!