Adventures In Infectious Disease- Getting It Figured Out

Today was my first meeting with my Infectious Disease doctor. It went very well.  He turned out to be about my age. He is middle-eastern and has a thick accent that I had to concentrate on to understand. He also has an interest in the outdoors and we listed off the local places that we like to haunt.  He told me “You are outdoorsy, that is good,” He had never heard of the Spicer Lake Nature Preserve, so I gave him directions.

He started out the meeting by asking me to tell him about my symptoms and what they were like now. Then we discussed when they started, what exactly I experienced, when they began to subside etc. He was interested in knowing exactly where I had been in contact with ticks. I always laugh when they ask me that question because honestly, when am I not in contact with ticks.

We went over the timeline of when I started to get sick, when I was put on the antibiotics and when I finished taking them.  I explained, very tactfully, my experience with Dr. UnHelpful MD and that I had to insist on being treated longer than 10 days.  I explained that I was forced to basically take over my treatment, based on science, and that I told him I wanted a 28 day regimen of antibiotics, at the very least.

He agreed with me.

Really, what I should have argued for, as it turns out, was that I should have pushed the Doxycycline over the Amoxicillan.  The reason is because the Doxycycline attacks the co-infections that often come with the Lyme Disease while the Amoxicillan isn’t powerful enough to do that.

I didn’t know.  I doubt that Dr UnHelpful MD knew that either.

My Infectious Disease doc looked over my lab results and told me that despite the Lyme infection, my blood was very clean. I’m not sure what that’s compared to.  Due to the timeline of when I stopped taking the antibiotics, he wants to wait until the end of October to run another round of lab work.

We discussed co-infections. I told him that I still felt a bit off and I was struggling with the fatigue at times, tender joints ( but not like they were ) and the brain fog. He assured me that regardless of the presence of a co-infection, I was still going to experience complications from the Lyme Disease for a little while as the bacteria continued to die and exit the body.

The CDC recognizes this as “Post Treatment Lyme Disease Syndrome” or abbreviated as PTLDS. It could take six months or more to get back to my normal self. Hopefully, I get back to my normal self. A month ago, I was pretty sure that was never going to happen.

So, right now, I am going to wait until the end of the month and return for another round of labs. I am satisfied with my visit today. It was good.  It was even better to finally sit down and talk to someone who knows what they are talking about and can provide answers to my questions. I feel less stressed out about everything than I did.

He was awesome. I’m a little bummed that, depending on the outcome of the labs, I don’t have to do any follow ups moving forward. Unless I have to. He warned me about my lifestyle and emphasized the chance of reinfection if I come into contact with a tick again.

I knew this, but it was great having a doctor tell me.

He seems to have a real interest in HIV/AIDS, as evident by the art and posters that were hanging around the office. I suppose that HIV/AIDS is the ultimate infectious disease. He came off as a very genuine and compassionate human being.

Dear God, may he never change.  People need doctors like this.

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5 thoughts on “Adventures In Infectious Disease- Getting It Figured Out

  1. That sounds like a productive visit, I was really happy to read this. I’m confused though, how long have you been on antibiotics in total? I’m doing Doxycycline as well, do you know how many milligrams you will be taking?

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    1. My original Doctor that got me diagnosed started me on 500mg of Amoxicillin for ten days. I opposed and demanded the refill. If he didn’t want to do his own work or refer me to someone sooner then I wanted the 28 day regimen which is the average.. I don’t know what my dose of Doxycycline will be. I’ll find out after I retest.

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    2. Also keep in mind that I was diagnosed pretty quickly so you and I are probably not going to be the same.. You went awhile without diagnosis. On that note, today has been a harder day. Considering I thought I was out of the woods or at least getting there, my eye won’t stop twitching and my joints are pretty sore. I’ve been up since 4:30am and running all day. I’m falling apart and fee pretty crappy.. Trying not to focus on those things though..

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