So this last week has been absolutely horrible. Monday was the worst day I’ve had since I started treatment. And with it following a time period where I felt so good, I think it just made it seem that much more extreme.

I was confused about what was going on because I typically flare up around the same time as my period (about every 25 days or so). This time it started much earlier but then I got a surprise on Monday when my period started (day 21). That was also my worst day so it’s doubtful that’s a coincidence.

The brain fog and other neurological symptoms have been bad. I’m slurring words, saying the wrong word and just mixing things up. I put something in the pantry that was suppose to go in the fridge and vice versa. I’m typing stuff on the computer at work and then going back to read it again to not even be able to make sense of it. I’m using the wrong words when I type (I’ll have to proof this post really well after I write it – if it’s screwed up as you’re reading it, just ignore please). My brain just isn’t working right.

On Monday, my husband came to take me to lunch. I was not feeling good at all and contemplating going home from work. But I hate leaving halfway through the day because it feels like a waste of vacation/sick time. As we were sitting there eating, I suddenly got this feeling like I was watching things through a filter or it was a dream. It’s like I was witnessing everything but not really there. I wanted to reach out to him and just pull him back towards me. It is the weirdest feeling ever. It’s only happened to me a few other times and it was very early in my treatment.

When I went in today, I told the doctor about it and she said what I was describing was referred to as depersonalization and it can be a part of Lyme. Well, I want NO part of it. It’s a horrible feeling and there’s nothing to do but wait for it to pass.

I told her how good I felt for the two weeks but that it all went down hill in the past week. She was disappointed to hear it and told me to increase the Doxy back to 400mg. She also wants to redo my blood tests to see what bands are showing up and make sure we haven’t missed a coinfection. She said it would tell her if she can treat more aggressively. I’m hoping she doesn’t use it as an excuse to write me off because I think I may have made her mad today.

Since I started feeling bad again, I have started doing a lot of research about why I’m not feeling better yet. I did a webinar with a Lyme doctor on the west coast a few days ago. He said that I haven’t been treated for the cyst (also referred to as round body) form of Lyme and until I treat that, I won’t get better. He said it can be done with grapefruit seed extract if I can’t get anything else but ideally it would be done with a prescription medication such as Flagyl. There are also herbal medications that can be used in place of prescription antibiotics.

Now, the idea of a cyst form of Lyme is highly debated and is one of the controversies surrounding the disease. There are some studies that show that Doxy drives Lyme into the cyst form which essentially makes it dormant and the antibiotics can’t penetrate it. The theory is as soon as the antibiotics go away, the Lyme comes out to play again and wreaks havoc.

So I found several articles about this from medical journals and publications as well as several different treatment guidelines that have been published online by two different doctors about it. I went in with all of this today prepared to have a discussion with her about it and get her opinion.

If you remember, the NP and MD have disagreed on a lot. The NP told me a long time ago that the cyst form doesn’t exist. Until today, I hadn’t asked the MD about it. And I kind of wish it was still that way but too late now.

She basically told me that it didn’t exist and if I wanted that kind of treatment for what I believed to be true about some “cyst” form, then I needed to find another doctor. I quickly backed down and told her I didn’t want another doctor and let’s continue treatment as is. It was obvious she was upset. So hopefully this doesn’t come back to bite me in the butt.

I may try to add the grapefruit seed extract on my own but I haven’t made up my mind yet. There are some reports about GSE being toxic so I certainly don’t want to make the problem worse. I need to do some more research into that before I strike out on basically treating myself.

For now, I just want to get back to where I was when I was feeling good. It’s almost cruel to give me that glimpse and then take it away again. I have certainly improved since this past Monday but I still don’t feel good. The headaches have been pretty much constant and my head is so fuzzy.

I go back tomorrow to have blood drawn and I’ll also increase my Doxy dosage tomorrow as well. I hope tapering up the dose will keep the nausea away.