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Unless otherwise noted, all recipes on this blog are free of gluten, peanuts, soy, corn, tomatoes, potatoes, shellfish, cane sugar, oranges, and yeast. Most recipes are also free of egg, dairy, and tree nuts (if used, reliable substitutions will be provided for these when possible). Check out my recipe index for a full list of recipes by category. 

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Sunday
Feb282010

I think I figured it out.

I think I know when I got bit by that tick.  I just put this together and it is kind of blowing my mind.

I think was in August 2006 at a party on Marine on St. Croix.  It was a birthday party for my former landlord's partner at their friend's beautiful house out in the country.  We all sat outside, relaxing in the wilderness.  Later in the night I threw off my clothes and jumped in the hot tub, leaving my clothes in a pile.

It's not like I noticed a tick or anything, or noticed a bite.

But one day in late August, I woke up with a little red rash on my leg.  It started as just  a small dot, then over the course of a few days took over my leg.  I remember thinking, "Is this a tick bite?" but not being able to imagine how that would have been possible.  It didn't look like a bullseye rash, it had a funny shape and was growing in a very strange way.  I and never saw a tick.  But it proceeded to grow and expand, becoming painful and red and bumpy and itchy. I felt sick and fluey. I went to my general practitioner at the time, who had no idea what was going on and was totally unhelpful.  He said it was cellulitis, and put me on an antibiotic or something. It didnt' go away. So I went to another doctor, totally irritated with his lack of help, and she referred me to a dermatologist, who was also totally confused. I was put on steroid creams and got a shot  in the butt of another steroid. Eventually it went away.  But it took weeks and I felt terrible. At the time I remember thinking how strange it was, so I took pictures of its progression over time.  Clearly,  I've always been observant (uh, hyperaware) of what is going on with my body...

Someday I'll find them and upload them.  I don't feel like doing it right now because I'm crabby. My sauna box stopped working this morning, I need it bad, and I'm pissed off about it.

anyway, not long after that whole bite incident my period went crazy. I had it for two months straight.  My gynocologist at the time had no idea what was going on and didn't make any connection to the bite or all the steriods, despite me telling her things had been strange ever since.  Eventually, my period regulated again.  But I started feeling all out of whack.  In retrospect, I think a lot of what I was going through emotionally was probably the start of my Lyme Disease life.  I was starting to feel unhappy in my relationship at the time, was feeling depressed and anxious.  Granted, there were lots of other life transitions going on too that contributed.  But I do remember feeling particularly out of sorts.  My relatinoship ended, I moved to a different apartment, and proceeded to take on a totally different lifestyle post-break up - as many people do - of drinking and partying and staying out late and shopping a lot.  I remember feeling sick a lot, although all the booze must have had something to do witih that. My skin was terrible.  My digestion was worse.  Things were getting all crazy. After I got the Gardasil vaccine in October 2007 things only got worse, and it was 3 months after that when things really started getting bad.

For a long time, I pictured the Gardasil vaccine as the beginning of my downward spiral. But looking back, I think it started after that rash. Previous to that, I certainly had my fair share of issues - allergies, digestive problems, depression.  But generally, I was managing.  Thriving, really; I had just completed two triathlons and a 300 mile bike race, had loads of energy, and was able to manage my depression and anxiety very well.  My period was like clockwork.  Things were, for the most part, pretty good.  But after?  More stuff started going wrong. My period was irregular for the first time every. I remember feeling more and more of an emotional wreck. I was acting in ways that were very atypical. I remember getting sick more and having swollen glands and getting more hives and having worse allergies.  My ability to exercise well had decreased.

Who knows.  Maybe I got bit before as a kid, then got bit again at that party. Maybe that rash was somethign else. Or maybe that party was when it happened.  Really, it doens't matter.  But realizing the timing around that party and realizing it probably had something to do with my infection was kind of an eye opener.  It blows my mind a little bit, and it feels weird to think about.

If it was back in 2006, that means I've only had it about 3 1/2 years, which isn't all that bad, and would explain why I'm not as terribly sick as some people.  I just can't imagine that crazy rash didn't have soemthing to do with it.  I've talked to my doctor about the rash and he thinks it is definitely possible that was the source.

Does it matter? No? But do I want to know WHEN this all started? You bet.  People want answers. People want to have solid knowledge. In my life, Lyme is nothing but shifting sands.  Nothing solid. It is frustrating.

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Reader Comments (4)

Hi Kim,

Glad to have found your site and that you're sharing your story. So important to get it out there. I added your blog to my blogroll at http://www.DeliciousHealthBlog.com.

I have a story that is somewhat similar to yours (if interested, you can read the posts under "Simla's Story" in my blog about healing from fibromyalgia and several other health issues). I was initially (mis?)diagonosed with Lyme, so I got intimately familiar with it along the way and can empathize with what you're going through. I never had a definitive bite or rash but the symptoms with autoimmune conditions can often overlap and can be misleading, as was the case with me. In my lyme journey, I ultimately ended up going through a 2-day outpatient assessment and testing at Columbia University's Lyme Research Center, being seen by Dr. Fallon (http://www.columbia-lyme.org/about/director_message.html). While the results weren't 100% definitive (Are they ever?... I don't think so.), the many, many test results and evaluations accumulated after months of being poked and prodded weighed more in on "not lyme" than "lyme".

Anyway - for the part about having your period straight for two months and the irregularity afterwards: it's a whole network of reactions going on in your body, but one of the main reasons that could have happened is the steroids. As powerful hormones, they can skew the other hormones in your body.

The good news is that you can get them back on track once you're treating and feeding your body right, as I see you've been doing.

Wishing you healing and health~

Simla

February 28, 2010 | Unregistered CommenterSimla Somturk Wickless

This is great. Sounds just like me. 2 1/2 years in, and I still lie in bed at night trying to piece it all together. I found your blog through a Lyme friend on facebook. Nice!

March 25, 2010 | Unregistered CommenterRenee Faucher

My rash appeared after a day-long hike in the woods and my rash appeared on my leg also. But, though the rash took up much of my lower leg, it didn't itch or hurt, it was just there. It came with a fever and me feeling very sick and almost passing out in the shower. A couple of weeks later, I woke up one morning -- unable to walk with severe pain in both legs. It's been a heck of a roller coaster ride since.--Mostly downhill. What makes me mad is that I was not diagnosed properly because of the insurance companies protocols. Not enough lines matched up on the test results and (to make a long story short) I lost my life and everything I had worked so hard for in those last 10 years. I blame the insurance companies for wanting to save money and I think there needs to be more awareness about Lyme disease and the diagnosis and misdiagnosis of it. I was told before they gave me the test that it would be a 50/50 chance of being a correct test result. What I didn't know, is that they wouldn't treat me anyway if it came back as a false negative. I mean, duh! I hiked in the woods for a whole day, mostly barefoot (it's a long story), and got the rash after the hike along with a fever and then woke up a couple of weeks later in pain and unable to walk. You are doing a great thing by getting the word out there and making more people aware. I am on a mission to get the word out as well, especially since I found about about the mis-handling of test results and treatment thereafter.

May 22, 2010 | Unregistered CommenterWendy

Kim, I just found your blogs via another gluten/allergen free site that I love.

'Shifting sands' is a perfect description for much of my life, as well. I like your words. I'm living with a mysterious auto-immune (and maybe genetic?) something that makes me crazy with its nastiness and indecisiveness.

Also: I worked on an organic farm for a bit, and was in the midst of earning a healer-type degree when all the chaos began. Seems we have a lot in common.

Living in the Twin Cities, too -- email me, if you like :)

May 27, 2010 | Unregistered CommenterMeg
Sorry, no comments/questions allowed right now.
Hi reader! My schedule as full-time grad student with two part-time jobs doesn't allow me the time to manage comments. I hope you enjoy what you find and can figure out answers to any questions you may have. xo