Worms to my Rescue!

Life with the worms is moving slowly. I still get reactions (although most are reduced in severity), and at these times I find myself sulking and cursing the glacial pace of things. During other moments, such as on a recent evening when I devoured several slices of pepperoni pizza and washed it all down with a beer, I’m positive that the worms are working and happy with my progress.

After my last post - which was far too long ago, I apologize! - a fellow food-intolerant helminth host emailed me a giant helping of encouragement (John, you have no idea how much you lifted my spirits!). He let me know that even 70 weeks after inoculation he was still seeing improvements.

What I’ve noticed is a clear oscillation: one week I’ll feel awesome, and the next I won’t feel as great. However, it does seem like the baseline is moving steadily in a positive direction. In the next couple weeks I’ll be taking my first real vacation since 1995, now that I can safely fly on airplanes, and find food in normal restaurants. That’s definitely nothing to shake a stick at.

In short: Yay worms!

Three months ago on Wednesday, I inoculated myself with 70-some-odd hookworm larvae. At first, I just felt worse. I couldn’t breathe and I still couldn’t eat. I’d look at the hyper-pigmented skin of my inoculation site and frown, sure that this was all going to be for naught (like all the other treatments I’ve tried). There were days of tears, and there were days of planning what I was going to do after I was sure it wasn’t working.

After six weeks, the depression started to lift. I felt a bit better. Eight weeks in, I felt even better. I encountered some bananas and was asthma-free (this in itself is a miracle). Ten weeks in, I tried some food. Wednesday will be 13 weeks. I can eat some bread, now. I can eat some fruit. The reactions I have to food and other allergens have decreased across the board. It’s definitely working! But, I still do have reactions, and I still have days where I don’t feel great.

All this has made me realize something: Hookworms are old medicine. I went into this treatment thinking that if I could just last three short months, I’d have my life back. That I’d eat a banana split and feel nothing at all. Modern medicine puts us into a mindset of quick, powerful results. Hookworm therapy is much more subtle, and requires patience I’m not used to having. But it does seem like it’s working… so, I’ll wait. And I’ll keep trying foods here and there to keep track of the progress that the worms and I are making. :)

I saw the doctor last week and he thought my plan for tapering Prednisone sounded good (see my previous post on the subject), except that he’d prefer the morning and afternoon doses to be as equal as possible. So, I’m currently at 7.5mg in the morning and 5mg in the afternoon, rather than 10mg in the morning and 2.5mg in the afternoon. It seems to be working out well. On Thursday I’ll go down to 5mg/5mg.

On a slightly related note, I thought I was feeling bad last week due to the Prednisone tapering, but it seems like I was actually reacting to sesame seeds. I’d begun eating sesame seed bars as a snack and was getting daily headaches and general malaise (incidentally, this is the same reaction I have to corn). I’ve stopped eating sesame seeds and continued the Prednisone taper, and have been feeling great again (yay!). This could mean that I don’t need to be going as slowly as I am with the Prednisone, but I’m going to stick with it as it is since things are going well.

Wednesday will mark 8 weeks with the worms. I was going to wait until then to write another post, but I’m so thrilled with the way things are going that I had to mention a few quick things!

First of all, this is really strange and I can’t be sure it’s related to the worms, but my skin and hair have become unbelievably soft. I noticed it about a week ago and figured it was just a nice skin day, but it isn’t going away! The only negative aspect of this new development is that I can’t seem to get my hair under control. It’s huge. It just wants to do its own crazy new thing. But damn, it’s soft.

I’ve also been tapering the Prednisone for about week, and I’m down to 15mg a day (from 20mg). Because I got a larger dose of hookworm larvae (I think it was 70 or 75 - typical AIT dose is 35 larvae) I’ve been taking Prednisone to keep the side effects under control. Before I ramped up to 20mg Prednisone per day, the epigastric pain from the worms was nearly unbearable. I’m really glad I was able to take it, but as it turns out, coming off of it isn’t trivial.

I was rolling cowboy style at first, trying to reduce my dose by 2.5mg a *day*. This, I have discovered, is not a smart idea. I was feeling physically and mentally uncomfortable by the third afternoon, and actually took a bit more Prednisone to relieve the withdrawal symptoms. The anxiety alone was surprisingly debilitating. What I read online about adrenal insufficiency and adrenal crisis was enough to scare me straight. So, after a bit of research I created a new plan for myself:

• 10mg (morning) / 7.5mg (afternoon) x5 days
• Taper by 2.5mg in the afternoon every 5 days until the afternoon dose is 0mg.
• Split the morning dose in half, taking the other half in the afternoon. Continue to taper by 2.5mg in the afternoon until it is again 0mg.
• The last 15 days I think I’ll need 1mg tablets (I’m splitting 10mg tablets at the moment): 2mg / 1mg x5 days; 1mg / 1mg x5 days; then 1mg a day for the last 5 days.

I think most people could probably come down faster than this, but I am a sensitive flower! :) I’ll run this plan by my doctor Wednesday to make sure he’s cool with it, but I’ve been following it for the last several days and the withrawal side effects have been much more tolerable. Especially when I don’t drink any tea - caffeine really amplifies the anxiety.

I still haven’t had any Benadryl since my last post. I think it’s been about 2 weeks. My nose hasn’t been particularly stuffy and I’ve been sleeping very well, so I think I just don’t need it anymore. I’ve also noticed that my stomach doesn’t seem to be turned by food smells, lately! I haven’t encountered anything banana-y, so I’m not sure how that is going, but I’m gonna just give that a few more weeks, I think. *shiver*

There’s nothing particularly special about day 47. That’s just what today happens to be. I think I’m finally starting to see some changes, so I thought I’d post an update!

About a week and a half ago I started noticing a difference in my overall health - I seem to have a ton of energy. I’m talking more energy than I can ever remember having, even as a young kid. I went camping in a sand canyon for Memorial Day weekend, and I was tromping through sand dunes for hours at a time. Totally insane! The general lingering malaise is almost totally gone, too.

I’ve also started forgetting to take my daily medications (benadryl and prednisone). Usually allergies and side effects were a constant reminder to take them, but with those going away I have to start setting an alarm. I haven’t taken benadryl in almost a week, actually, and I began the taper of the prednisone today (2 days early).

It’s a little hard for me to believe that the change in my health could be due to the worms, but the consistency of the improvements is definitely encouraging. I have to say, if this is the best it ever got I would be pretty happy with it. That said, I’m hoping for more (knock on wood)!