Worms to my Rescue!

I’ve had a few requests recently to post an update about how I’m feeling. I know I’ve been deficient in posting my progress and I’m sorry for that! I heard many times before I got my worms that people tend to get better and then drop off, having gotten on with the business of living. That’s definitely (and thankfully) what’s been going on with me.

I’m going on 10 months post-inoculation, and am still seeing slow improvement. I have noticed recently that my moods aren’t all that stable and I’ve been wondering if that could be residual food reactions. I don’t seem to get much in the way of joint pains, heartburn or nausea anymore, but I occasionally get unexplainably melancholy (sometimes downright inconsolable) after some meals that would previously have made me sick as a dog. It’s probably just a coincidence, but something I’ve been thinking about recently.

Some random stats:

* I’ve been taking 10,000 IU Vitamin D per day for several months. I’m pretty sure now that it’s Vitamin D that made my skin and hair so soft back when the worms started working. I wonder if they improved my ability to absorb Vitamin D? In any case, in addition to soft skin, I tend to be less moody and sleep better when I remember to take the D.

* I’m taking a multi-vitamin that has 20,000 IU Vitamin A in particular. A friend mentioned a possible link between inappropriate autoimmune responses and Vitamin A deficiency which prompted me to start taking it. I haven’t been very consistent yet, so I don’t know whether or not it’s making a difference, but I’ll try to do better and report any changes that might be related.

* I stopped drinking caffeine about 2 months ago and have since stopped having anxiety in large crowds and when giving presentations at work. Even a single cup of green tea brings the anxiety back on like gangbusters, so I’ve switched to peppermint and don’t let myself look back. This is probably not related to my autoimmune issues, but I figured I’d mention it anyway!

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)!