The joys of Lyme treatment

[alee_grrl]

So there are a lot of things I want to do posts on. I want to catch up on the weekly round-ups, I want to continue with my 100 Things I love post. I have a couple of vague ideas for poems that I want to write. But right now I'm just out of energy and having a dreadful time connecting thoughts and coming up with words. It's not surprising, as I just started the next round of Lyme treatment yesterday. But it is very frustrating.

I have to remind myself of just how good I was feeling when I saw my Lyme Doc on Thursday. The fact that I was able to do six days in Washington DC (and the surrounding area), doing touristy things and visiting friends and hold up really well despite some rather long days and more physical activity than I am used to. I was really tired at the end of each day, and by the end of the week I was definitely a little achy and fighting more nausea and lack of appetite. But just months before I would have felt the effects much sooner and more noticeably. It would have taken me more than a week of sleep to feel decent again. As it was it took several days of rest and lots of sleep before I starting feeling more human again. I had a lot of fun on my trip, and it showed me just how far I've come in the not quite a year that I've been in treatment. Knowing just how far I've come with treatment is a great thing to hold on to now that I've started the next round and am Herxing again.

Herxheimer reactions are pretty par for the course for Lyme treatment. The trick to treatment in my experience is working with a Lyme literate doctor who can help you manage the severity of the herxheimer reaction. My docs been awesome about that. We've generally started very gently and he reminds me every time we adjust medications that if I need to skip a dose of antibiotics to let the Herx reaction calm down if it gets to be too much.

My doc was really happy with how I was doing when I saw him on Thursday. We discussed the next stage of treatment and how aggressive we wanted to be. My class doesn't start until July 12th, so I've got some down time. As much as I hate feeling like shit, I'd rather get the worst over with now while I have down time. So we stepped up my dose of tetracyline from two 250 mg capsules 20-30 minutes before breakfast and two 250 mg capsules 20-30 minutes before supper to two 250 mg capsules 20-30 minutes before breakfast, lunch and dinner. Unfortunately the different between 500 mg twice a day and 500 mg three times a day is substantial according to my doctor. I can believe it with how I feel right now.

I'm achy and drained, my brain feels like it's trying to work through molasses, my eyes feel like sandpaper, and I'm having a hell of a time focusing. I've spent the day quietly; very thankful that the worst of the heat wave we had seems to have passed. It would be much harder to handled 95+ degree temps (and substantial humidity) without a/c and feel like this. But Vermont temperatures have become much more normal. We had a lovely thunderstorm with heavy rain and now it feels lovely temperature wise.

Since I am not up to being outdoors for long periods of time (thanks to the sun sensitivity caused by tetracycline), and I am not really up to doing much this weekend I am celebrating Pride by watching QUILTBAG movies and documentaries. Netflix has some good options here. Today's choices were: Before Stonewall, After Stonewall, and Fagbug. It occurred to me that this coming week would be a great week for a multi-hosted themed week over at poetree focusing on QUILTBAG poetry since June 28 is the anniversary of the Stonewall Riots. So I set up a post to organize said week.

Wow, this turned into a rambley post. I have a feeling my posts and comments my be a bit rambley the next few days as my thoughts work their way through the brain fog. I remind myself that this too shall pass and the improvements are so very worth the awfulness of treatment. Each round of treatment kills more of the Lyme spirochetes and puts me that much closer to full remission and that much closer to a level of health I cannot remember.

Comments

[jjhunter]

Thinking of you, and sending good thoughts your way. Am hoping to have time tonight to send you the email I started two weekends ago before I got caught up in con prep + whirlwind of finishing off that art commission.


p.s. your new journal layout is gorgeous - I really like it!

[alee_grrl]

Aw, thanks. I am doing a bit better after a good sleep. Will likely spend today quietly as well.

Glad you like the new layout. I love periodically checking the themes and seeing what cool new designs people have come up with.

Con prep and attendance is always a whirlwind affair (a fabulously fun whirlwind usually, but a whirlwind nonetheless). Hope all is well with you.

[sulien]

Sending lots of healing, positive and supportive vibes your way. I am so glad that you got to go and have some fun while you were able before the next round of treatment! It's always nice to get a good look at that light at the end of the tunnel before going through another dark patch. *hugs*

[alee_grrl]

::hugs back:: Thank you for the healing, positive and supportive vibes (and the hugs). Those are always appreciated. I'm also glad I got to go out and have a bit of fun before the next round. It felt like ages since I'd been able to do that.

[untonuggan]

Thank you for this post. I know you're going through misery right now but it will be worth it in the long run. That's what we have to keep telling ourselves, right? Feeling less alone since you posted this.

[alee_grrl]

I struggle sometimes with my posts, thinking that too many are dark, depressing, or just plan whining. I often worry that people will get sick of the darker posts. I remind myself frequently that I write for myself and share for those who might be in similar places. But it really helps to know that my posts have helped someone else feel less alone.

I don't read a lot of other Lyme blogs because the ignite my brain weasels. I get sucked down into that spiral of "but you're not *that* sick, you don't feel *that* awful, what the hell are you whining about."

So when I do write about treatment I try to be honest, but still find that sliver of hope, that silver lining that reminds me why I'm doing this in the first place. I remind myself of the improvements I have seen, and the consequences of not doing treatment. I think of my friends going through the same thing, and my friends who may not understand exactly what I'm going through, but who try and are supportive. We are not alone, and we will make it through this.

[untonuggan]

You are doing a really good job, and I thank you for it. <3

Healing thoughts.

[syntaxofthings]

I can't imagine being in this position of having a disease with such an aggressive treatment, but I'm very happy for you for having a good doctor to work with. I'm noticing that a good doctor is a difficult thing to acquire. But I appreciate having these posts, too, so I have some idea of what it's like to have a disease like Lyme that makes it so hard to do even the simplest things. Thank you for posting this, and I hope the new round of treatment helps a lot before your class starts!

Re: Healing thoughts.

[alee_grrl]

Thank you so much for your kind words! I had a friend who went through treatment for Lyme in the 2000s, and I remember thinking that I could never do such an aggressive treatment. I said as much to her when I started law school, since I knew at that time that I had almost identical symptoms to what she had even if I had not been diagnosed with Lyme. I said, "I can't have Lyme, I couldn't go through treatment and law school." But oddly enough that is exactly what I am doing. My symptoms got exponentially worse during the first year of law school (stress being a factor that causes flares and weakens an already compromised immune system). I was seeing the same doctor she had seen for Lyme, but he must have gone through some mid-life crisis and decided he didn't want anymore Lyme patients. He didn't even test me for Lyme, barely looked at my medical records I brought with me, and just went with the treatment my pre-law school doc had given me for my fibromyalgia (what I thought I had). When things got worse and I finally got in to see him (a nightmare in and of itself), he basically patted me on the head and told me law school was tough, see you in four months. I never went back to his office. I gritted my teeth and got through the end of the year, and then went in hunt of a new doctor. I found the doc I'm seeing for Lyme through the National Fibromyalgia Association website. Thankfully, Dr. Carr gets that I have to be able to stay in school to get through treatment (no school, no money, no insurance). It would be much harder to hold a job and go through treatment (as one friend of mine is doing). My school has been remarkably understanding and helpful for the most part as well. I am currently living in a place where I already had a good support network of heart family. I am also developing an amazing network of friends on dreamwidth. So I have many blessings to count. :)

Re: Healing thoughts.

[syntaxofthings]

Definitely - the blessings that you're being treated well and have an understanding doctor who agrees with your concerns about being treated while also dealing with school. Except I can't even bring my mind around the fact that you're in law school and being treated for Lyme. That amazes me. Go you - and yay for your heart family and Dreamwidth friends and good doctor and everything!

Re: Healing thoughts.

[alee_grrl]

I occasionally can't get my head around it either. ;)