June Part 2 – Mini Vacation to the Dr’s


Geesh! I completely failed to mention in my last post I can now have a NORMAL shower! My first shower was awesome, by the way. And my second.. I may still be lacking in them without an excuse now but I am sure my third will be just as great! 😉


I passed out on the plane, Dave said I was “catching bugs” the entire trip, which was good as we got stuck in front of a woman who wouldn’t stop hacking, the kind of hack of a two-pack a day smoker. Yuck! We dropped off our bags at our hotel and then decided to try to tackle some museums. Last time we were in DC, we went to the Air and Space Museum, and I did pretty piss poor.


My museum trip seemed to be a lot more successful this time. I did have to stop and rest several times but we did a lot of walking. A LOT of walking. We went to the Natural History Museum and wandered around a few of the smaller ones. We had a good time but holy moly did I feel it in just about every single way when we were done. Endurance building and overdoing it can be a very find line. I began to feel very dizzy, and got the hot/cold hot/cold feeling, so I was putting on and taking off my sweatshirt about every five minutes. Either way, I was able to do it which is fine by me!


The Great White Shark head.. we have missed our Hawaii shark diving trip for two years now.. hoping maybe it can come next year. *sigh*


As soon as I got back to the hotel I took a nap for a few hours and then we ate at a little Italian place a short walking distance away. Once again, as soon as we got back to the hotel, I was out like a light until Dave woke me up around 9 to get myself ready for bed. The day wore me out, but we had time to kill before my appointment with Dr J, so the next day off on another adventure we went!


We decided on the National Zoo. Boy, what a walk! The past two days have by far been more than I have walked COMBINED in the past two years. I actually did a lot better walking around at the zoo than I did at the museums. I think it is because it was open, so the conversations and lights didn’t “trap” me in and I didn’t get dizzy. I am really proud of myself for what I have done the past few days.


Probably our favorite, the orangutans. It was so neat to see them climb from one of their housings to the next!


After making our doctor’s visit a mini vacation, I finally had to go to the doctors. I think it was a pretty good trip, and I got some answers to my top concerns that were different than every other month.


One topic was my nighttime seizure after I got my line out. He didn’t seem all that concerned with it, and it seemed more to be from my body’s trauma getting my line out as the nurse thought, so we were right in thinking that might have been the cause.


My lamictal levels are going to be checked (I take it everyday for seizures), and if my levels are okay I will be increasing my dosage to try to fall asleep easier. That was probably my highest concern of the month. Not being able to fall asleep is a terrible feeling, even if you aren’t struggling with chronic illness, and it leads to an uncooperative sleep. Hopefully that will help!


The third was the uncomfortable topic. Pain during sex. I feel so much more comfortable talking to a woman about these types of issues, but he at least gave me some answers. Along with some of my sleep issues of pain trying to find a comfortable spot to sleep and the sensation of menstrual cramping when I don’t get my period, it is likely a nerve issue. He did not think the ultrasound results based off of my medical history and symptoms were all that alarming. Phew. Gabapentin levels are also going to be checked to try to help with the nerve pain.


He actually seemed positive that I am having painful sex, as before I felt absolutely nothing. He thinks my body is slowly healing itself and it should go back to normal on its own. No more DHEA for me, as the levels were high, and having my testosterone levels go back to normal he thinks that really is the issue.. my body resetting itself and healing.


If the symptoms continue, I know that I need to continue further with my gynecologist and Dr J to find out the next step. Another wait and see. Ugh. At least it put my mind to rest some.


Dr J definitely agreed my skin was pretty terrible…. and still is terrible. He wrote a script for a cream to heal it up. It is still really raw. The bandaging has come off and the sterile strips have fallen off ( Okay.. I might have pulled the rest of it off but it looked ridiculous flopping around), so the cream should help. I was interested as to what Dr J had said about my skin. He thinks it was definitely irritated, but it very well could be herx reactions amplifying the irritation of my skin, not necessarily the 80 thousand dressings and products I have tried. Cream it is. I think it is an antihistamine cream, but I honestly can’t read his writing on the script pad so I will have to wait to tell you 🙂


The game plan of medications… I will be reuniting with an old friend, Omnicef, and it will be joining all my new and familiars. I will still be doing my pulse treatments, and I will be cycling through these rounds a couple times… until September! Three whole months without having to fly down to DC! I am really excited about that one!


I do have to do another round of Coartem, although I thought I was all finished with this, but my symptoms of Babesia seem to still be sticking so we will tackle it some more. No big deal. I did much better on my last round so I am optimistic it will go really well.


I will be starting the next step in my treatment with Dr J on Monday. I will be having as much fun as possible,( if my body allows me after all my walking!) as this can go either really really good, or really really bad. Fingers crossed that I have tackled the worst of the monsters inside of me and I will be okay.


Of course.. the classic Kimmiecakes thumbs up at Dr J’s!


8 thoughts on “June Part 2 – Mini Vacation to the Dr’s

  1. Do you know why Babesia is so difficult to irradicate and it take so mich antibiotique to do it? The pharmacist told me why they give you antibiotics for so long? Once the parasite is dead it is dead! I didn’t know what to answer. I tried an herbal protocol for 1 month, but symptoms were coming back. I am going back on antibiotics and I am totally with you regarding all the bad stuff that is comming (nausea…) You are a great source of inspiration. Thank you for your blog.

  2. I am so happy for you Kimmie!! How did they take your line out? I have one just like and I am scared about how they take it out (though that time is way off in the future!). How long did you do IV antibiotics and if you had to name a % of improvement what would you say? I am battling chronic Lyme, Bartonella, Babesia and Mycoplasma. I am doing IV Clindamycin currently.

    • I honestly really couldn’t see but since it was tunneled I have two scars. One where my line was and a long one above it. I think he used the one above it to pull on the line. I could feel a lot of tugging lol.

      I have made about a 60% recovery I would say. I am gradually getting better and better though.Good considering I was at about 20% before. Things were really bad for me last year. I was going on my 11th month with the chest line and had 5 months with a PICC doing rocephin, which didn’t do a darn thing for me.

  3. So happy for you that you were able to do some fun things while in DC. Best of luck with the next journey in treatment.

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