April 2013 Part 1 – Not Messing Around Anymore

After a discussion with Dr. S, we thought it might be best if I went to “the” specialist in DC. They use a variety of different treatments that simply aren’t  done around here, and they could integrate a lot more neuro meds, that are obviously needed for me, that he couldn’t do. I was expecting a minimum 6 month wait but after my phone call, I got an appointment in less than two months. In Lyme time, that’s nothing. 


Dave joked around with me as he thought Dr. S would have called and referred me, (I’m sure he would have to try to get me in a little sooner but I had  never asked him to) but he didn’t, so by my message I had left at the Clinic , the way I talk, tic and stutter he thought maybe the DC office had a poll going on if I was “all kinds of special” so that’s why I got an appointment so quickly. Hahaha. Whatever works, I got in! 


And then it was finally time for my PICC line to come out. Who would have thought that a little piece of tubing, that changed how I lived for months, would only take seconds to come out. It was so much easier than my weekly dressing changes. Helen took off my bandages as I layed in the hospital bed and I looked the other way as I didn’t know if it was going to be painful or super gross and looked to me and said, “That’s it! Just gotta measure it and make sure it’s all out!” Seriously. Easiest procedure ever. And of course, it all came out. I gave her a big hug and told her I would see her again, and probably request her to do whatever lines I end up with in the future. 


This was the first time for a long time without taking any antibiotics. After a doctor S Visit, we decided it would be best to let my system clear out as my ferritin levels (a protein that binds to iron) were ridiculously high and I haven’t really had much of a break in a long time. He said it was likely the rocephin causing the ferritin to be so high. 


Dr. S. thought that because of my high ferretin levels, I could have a high iron overload, which would cause or increase some of my symptoms. I got a giggle from his notes that he gave me, as he said the classical treatment for hemochromatosis was bleeding, follow up with labs in a week, keep the menstruation going. haha, Don’t worry Dr. S! I will get right on that! 


Ironically, I couldn’t even follow the Dr’s orders to bleed as I stopped getting my period for the next two and a half months. I am a rebel, I tell you.

 Pretty much everything on the bloodwork was kind of out of wack, and I still had the liver and pancreas issues. If I remember correctly nothing was  alarming, but I remember my vitamin D was low and my RDW blood count was high. 


Dr S didn’t put me on any treatment for two weeks to try to help clear my stomach as I was having bathroom issues once again. Constantly. I think maybe my body was trying to rid itself of all the poisons I had put it through for the past several months. He figured it was best to continue on letting my body clear itself and not try another antibiotic. He decided after two weeks of nothing, for me to start an herbal regimen called a-l complex to try to still have some sort of a lyme treatment in the meantime while waiting to go to DC.

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