October Part 2 – Oh Boo.

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It has been a long few weeks. Treatment was really difficult and discouraging. It was almost a blessing I did a little bit of a shortened protocol due to the cost of Daraprim. I sometimes feel like everything goes backward, but I always try to remember that treatment is working, and hitting the bugs hard.

I finally got some explanation as to a big reason why I haven’t been doing well at all. After dealing with this all for so long, I know when something isn’t right. I knew I wasn’t just herxing. I knew a lot of the symptoms did overlap Babesia symptoms, but I haven’t had times that my chest was in so much pain, and developed a dry cough in the morning and at nighttime and the nausea that hasn’t seem to go away, on or off treatment. I had begun to have some little moments of blue skies, and it seemed to have just stopped.

My answer: Mono AND pneumonia. Oh joy. I have spent a lot of time on the phone with my LLMD as well as my LLND here in New Hampshire. Once Dr S got my results, I was called and asked to come in as soon as possible.

The following day I went to his office for an appointment, as he wanted to give me a treatment for mono. I thought a big part of this was interactions between my antibiotics and my herbals, but was surprised to learn that it was my seizure medications he was worried about. A tincture and a few supplements later, I was prepared to start my treatment.

It was a hard appointment, as I think between the pneumonia, mono, and the Lyme and coinfections, I have just been a mess. A very sleepy unhappy mess. I was stuttery, and was off in la la land somewhere. He told me he really had no idea how I was even sitting and doing my best to talk to him.

I explained that I have to get up. I don’t have a choice. I always have, even at my worst. I have to fight. I think mentally it is a really good thing to try to keep as much as a normal life as I possibly can, yet I am sure it has been a little part of hindering healing. I think trying my darndest to be a little more normal brings positivity and hope though, and that is also a big part of healing.

There isn’t anyone to do all my work for me in the office, although my Mom came home from their house up north to help out with what she can over the weekend. On a really bad day, even something as simple as checking my work, stapling papers, or putting bills in envelopes is a huge help. It is also the end of the quarter, so it has been pretty overwhelming and I instantly get frustrated and my mind completely shuts down. It has been a relief to have the help. The past few weeks I have been in tears at work due to all the stress.

When I am not trying to get everything done, I have been sleeping. Dave doesn’t even try to take me up anymore. I often sleep for about 15 hours a day. I am bummed however, that I haven’t been good and using my recumbent bike. I just haven’t had the oomph. Once this all passes, I will get back up on the horse (however that saying goes..) and start back up with my exercise regiment.

As for my phone discussions with my LLMD, I was told that I should just let the pneumonia run it’s course, since fortunately my antibiotics do overlap what would be used to treat. They reiterated that I really need to go to the ER for the major issues I have had. Just go. Even if I hate them. Okie doke. Wahhh 😦 A big bummer is that I have been told between everything, it could take a few months to truly recover, and it has made the buggers come out and join the party.

Treatment will kind of be a wash. I will have to look and see what I have, and maybe go back to my last protocol, as I had the option to do one or two more rounds of it (I only did one, I was antsy to try my new one), since it will be a whole lot cheaper. Makes sense, right? I am not going to use my super expensive widely unavailable drug if it isn’t going to be as effective as it can possibly be. We’ll see.

One of my friends has been a very sweet, making desserts for Dave. I am not a baker. Anyone who has seen my skills knows this. Apparently, you can’t use the “eyeball method” for baking. Or substitute things. One year, my no bake cookies for Dave’s boss for Christmas looked like a big ol’ pile of diarrhea. He must have thought “WTF!” when he opened his goody bag. Thanks for a good year boss, now here is a Christmas tin of diarrhea. Nope. not a baker.

Last night she even got me out of the house for an early dinner. Silver linings. I have been down for sure, and it was so nice to have some girl time and not feel a bit sorry for myself, or glued to the couch.

I do think I will bounce back from this all sooner. I had a better day the beginning of this week, and made a lot of accomplishments. I picked up a few things at the grocery, did some cleaning, laundry, made dinner, and of course work. I felt like a rockstar. A very awesome rockstar.

I have had to laugh as it is that time of season… Facebook has been flooded with people whining about their terrible colds leaving them on their death bed, which has made me want to punch most of them in the throat, considering I have been pushing so hard. I think maybe I have become numb to this all. Or everyone is a bunch of babies. Either or. Maybe both.

I do find it odd.. I don’t think I have had a cold for a few years. Is anyone else with Lyme like this?

I have heard the theory that colds really are symptoms… the stuffy nose, sore throat, fever etc are parts of your body trying to fight it. And if your immune system sucks, then your body won’t fight a cold. Enlighten me. Pretty sure I am right on this.

It has been awhile since I last posted so I apologize, but nothing super exciting has been going on. And I have really been looking for some moments that weren’t all violins, and I think I am starting to get back to a little more optimism and my usual Kimmiecakes self. Wishing you all a good rest of the week! Much love to all.

9 thoughts on “October Part 2 – Oh Boo.

  1. All this sounds pretty dramatic to me! Been through all of this and am still fighting. So afraid that if I give in and “just rest” that I will never get back out there. Keep it up, and thank God for your husband, family and friends.

    • Yup. Still fighting too. That is about all you can do. I fall asleep pretty easily, borderline having to go and get a narcolespy test. Haha. I know it will get better over time. I have heard fatigue is one of the last symptoms that seems to linger…
      And yes! Totally. I have some good people in my life. I hope you do too. It makes everything seem not so bad. xo

  2. it is immune response Kim – mine had quit responding to even my ellergies. And its why i used to catch every “bug” that came through – my immune system was trying to fight Lyme.

    You hang in there and don’t let this get you down.

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