Okay, sorry for the mini rant, someone suggested to me that maybe I should try writing or blogging about my experience with this and I may be able to help someone else, but that still frustrates me a little that I had such self esteem issues over this disease. It didn't help either that my first misdiagnoses was for a few years as depression/anxiety because my symptoms of the bartonella are heavy and they cause similar symptoms to depression just like lymes can. Had any of the psychiatrist/ psychologists been versed at all about these diseases then they might have possibly thought to say to test for it after all of the negative reactions to the drugs. There are probably so many other people out there that were misdiagnosed the same way (not to mention countless other ways) because of how little people know about this disease.
I got really lucky because my parents happened to know about this disease, my mom actually had it as did most of my dads family so they asked me to ask my doctor to run the test. However I had to have the test done from a specific lab, igenex, in order to have the proper results. When I had the first test run I was living out in Alabama going to college. I ended up having countless blood tests drawn, a spinal tap, ct scan, mri, etc, etc, etc. until they told me that they don't have lyme in Alabama, and according to the cdc and blah, blah, blah. It took my mom searching and calling and trying and trying to find whats called a Lyme literate doctor. I ended up moving back to Florida in with my parents because I can't drive anymore and I couldn't walk down the hall at one point.
The whole purpose of me writing this isn't just for me to rant, it's also for me to try and hopefully potentially help even just one other person. I have been thrown on and off all kinds of medicine because my body couldn't handle them and I've been on tons of vitamins plus eating a super healthy diet. I know that reading what other people who are dealing with lymes have to say, be it either tips or inspirational stories helps because they all said the same thing, it gets better. And while I don't feel that way all the time, I hope that writing this will help me as well. My goal is to try to write at least once a week with updates about my medicine/vitamins, any good new recipes I've found or tried recently and quite possibly a project that I made from pinterest because now I at least have somewhere to share them and my crafts are one of the little things I look forward to. I will try to write tomorrow to let you know what medicines I'm on and a bit about my diet but just really quick before I go, it's (deep breath) low gluten, low dairy, low sodium and I just found out that apparently all the meats I should be getting should be organic but thats a story for a different day.
That's it for now,
The Lyme Life
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