LLMD Appointment: 3/20/13

I had what I think was a successful LLMD appointment yesterday afternoon. I spent almost two and a half hours there, some waiting, but good talking.

I started the appointment off with cognitive testing. This was composed of computer testing to measure reaction time, higher level executive functioning, stuff like that. The first part of the test involved showing you 15 words then it mixed them in with a bunch of other words and when one of the original 15 popped on the screen you had to hit the space bar. They did this with shapes, too. There was some matching and coding stuff, a tap test to identify more reaction time stuff, and then repeated the 15 words/picture test. It only took about 30 minutes.

Earlier this week I got a call from the doctors office that the doctor I normally see had to move her trip up and was leaving today. I freaked when I got the message because I thought I was going to have to reschedule and I had come from CO so how would I reschedule?! Freakout, get it? Anyway, they said I could see the other doctor instead at the same time so that worked out. The other LLMD where I go is actually the guy who opened the clinic and is very knowledgeable- Lyme is truly his specialty! So I was actually quite excited to meet with him and see what he thought about my treatment and progress.

I scored pretty well on the cognitive testing but based on how I have been feeling, he believes I have some inflammation in my brain and especially with my cranial nerves. I get mad headaches, blurry vision, can’t concentrate or focus, ringing in my ears, and a general swollen feeling in my head. 

He examined everything I’ve been taking and tried to figure out which meds I may or may not be responding, too. He went over all my blood work with me and just generally explained everything very thoroughly. He says I have definitely improved but I’m not where I need to be, yet. Well Duh, but it’s always good to hear that from a doctor! After years of doctors not getting it he totally does and it is always nice to hear that.

He started me on a completely new treatment plan. I’ll be pulsing 4 different antibiotics and will stop taking all the ones I am currently on. Weeks 1 and 3 I will be taking two antibiotics, weeks 2 and 4 will consist of a different two- one will be taken Monday thru Wednesday and the second one Thursday thru Sunday.

I’ll be starting with half doses until we see how I respond and if I have a herx reaction and how severe. He said he has never tried this specific regimen (the pulsing with these antibiotics in particular) before so I’m a bit of a guinea pig, but I’m hoping it works out! One of the big reasons for doing things this way and monitoring me closely is due to my thyroid. I have Hoshimoto’s (autoimmune disorder that attacks my thyroid) and my thyroid levels are currently on the fence. They are fine for now but he said one of the antibiotics can cause major shifting.

Anyway, all in all a great appointment and I’m so glad I got to meet with him. I’ll be having a phone consult with him in 6 weeks to follow up on this new regimen then back to the office to meet with my usual doctor in 12 weeks.

Fingers crossed this helps bust through my plateau and things start getting better! I’m back to Colorado tomorrow- can’t wait!- and hopefully will have time to do some baking this weekend. I have a great recipe I’m planning on cooking up so expect that, as well. And I have a new breakfast pancake recipe I’ll be posting soon for you all.

4 thoughts on “LLMD Appointment: 3/20/13”

  1. It’s so good when you finally find a doctor that GETS IT! I found one, then she retired right after my first appointment! Grrrr. Now I am without again….

    Anyway, looking forward to hearing about your baking, and how your new regime goes.


  2. It is great to work with a doctor who understands Lyme for sure! I hope your new Tx plan goes well. I’m doing pulsing right now too – partly to gauge how much live Bb we are still dealing with and partly to kill more Lyme! I have Hashimotos too- though it took about 15 years to find out my thyroid issues were autoimmune and to get the proper Tx. Actually, that was how I found my LLND – seeking an alternative provider after years of frustration with the mainstream doc and he was the one that found the Lyme.


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