Wednesday, July 15, 2009

On the roller coaster again

Time has flown since my last post. I've been busy writing, helping my son fix up his vintage VW Bus, weeding the flower bed, and cleaning out the garage. Aside from the writing which doesn't tax me physically, I don't do nearly as much as it sounds like. I just poke along at Lyme-speed, marshalling energy, planning tasks in stages that I can spread out over multiple days.
Early Wakefield heirloom cabbage

The weather here in Connecticut has been great. It rained some part of almost every single day in June. I like that because it keeps the temperature down. And July has been unseasonably mild, including fifty-degree nights and highs around eighty, breezy with low humidity. Fort Hill Farm--the organic CSA farm we belong to--has been harvesting early crops for five weeks now. Amazing greens and lettuces, snap peas, summer squash, greenhouse tomatoes, onions, broc, cauliflower, broccoli rabe, a wonderful heirloom conehead Wakefield green cabbage, beets, carrots, escarole, strawberries, herbs, cut flowers, and on and on and on. Our farmer works thirteen acres just down the road from us, and from this small patch he feeds 400 families. In another couple of weeks we should get corn and field tomatoes and crisp yellow watermelons. I can't wait.

I'm enjoying the email-based writing course I signed up for two months ago. It's keeping me busy and I'm progressing steadily. I've produced three manuscripts and all are in various stages of the submittal process with various mainstream and literary magazines. No acceptances, but it's early days yet. Fingers crossed...

It may be time to say goodbye to feeling good for a little while. I've been on plaquenil/biaxin/tetracycline for three-and-a-half months now, and I've seen improvement. I saw my LLMD yesterday and he decided to keep the same regimen for one more month. Plaquenil is a slow-acting drug. It takes several months to ramp up. If I stop it now, and try something else, then to try it again requires another 3-4 month commitment down the road. I think my doctor felt it was worthwhile to try and squeeze one more month of benefit out of the current course before switching.

I've been on 1000mg tetracycline throughout this period. My first long-term antibiotic therapy back in August 2008 was 1500mg tetracycline, not paired with any other drugs. I was very sick back then, and herxed for five weeks straight. Tetracycline seems to always have the ability to bring out the Lyme in me. This is a good thing, but sometimes difficult to live through. The low dose has been much more benign.

Now, for this coming month, I'm on the highest dose of tetracycline ever, 2000mg, along with the biaxin and plaquenil. I started with last night's dose, and within an hour I was feeling it. My stomach feels like there's an egg-sized stone in it. Not quite nauseous. Food seems to help, but of course the tetracycline must be taken on an empty stomach. I watch the clock and eat as soon as I'm allowed. The stomach issues aren't lyme-related. That's just the drug's side effect. But the neurological stuff is definitely lyme. It all comes flooding back: pain in hands and feet, blurred vision, confusion, emotional instability including irritability and tears, sensory overload, muscle tics, and the list goes on. This morning's dose was even worse. I'm not sure if I have another month of this, or if it'll settle out in a few days. Either way is OK, as it means improvement in the long run.

My main complaint during these past months is a complete inability to sleep without some aid. I've been taking Neurontin a few hours before bedtime, and it usually allows me to sleep through the night. I wake groggy, but it's worth it. Without the Neurontin I lay down to sleep and immediately have restless legs. In the rare circumstance that I can fall asleep through this, or if I'm simply exhausted enough, I'm popped awake as soon as I enter deep REM sleep. And that's it for the night.

This is classic lyme-insomnia, both the restless legs and the mid-sleep awakenings. So, even though I may have been feeling better, there are still serious neurological problems. I suspect it's the plaquenil that's brought this symptom to the fore, and I'm desperately hoping for sleep relief on the next regimen a month away. I don't know what that will be, just that it won't include plaquenil.

5 comments:

Alison said...

So good to know that there's another Lyme sufferer who is a member of an organic CSA. I was explaining my eating habits to my LLMD and when I mentioned organic he thought this might be something very helpful to other patients. Cut out as many unnecessary chemicals as possible from our diets. here's a link to a newspaper article about "Our CSA"

http://www2.canada.com/edmontonjournal/news/sundayreader?id=64db47df-fle2-4f3f-818-05277dc3a2bb&k=71575

sure hope I managed to type that in correctly, you know what lyme brain and eyes can do to things!!

Hang in there they tell me there is a light at the end of the tunnel!

Alison

Joe said...

Hi Alison:

Thanks for the comment! I enjoyed that link (you did type it correctly). I didn't get at first that it really is YOUR CSA. Very cool. And nice wedding photos--congratulations!

Be well.

-joe

Naomi said...

Horray! I'm all for organic and local... it can only help us recover faster. Great to see such lovely pictures of your wedding, Allison.

Hey Joe-- I've been wondering how you're doing. That Plaquenil is a bitch, isn't it? (excuse my language. I don't know how else to put it.) Hang in there!

And congratulations on your writing! Three manuscripts is quite an accomplishment. I'm curious about what you're writing.

Naomi

Joe said...
This comment has been removed by the author.
Naomi said...

Hey Joe:

Recently activated charcoal has been helping me sleep. It absorbs some of the toxins from your system and lets your body calm down. Trick is, have to take it at least an hour away from any other prescriptions or supplements, or it will absorb good stuff instead of the bad stuff.

Just thought I'd toss that out, for what it's worth.

I'll send you an email soon so I can read your masterpieces!

Naomi