Monday, July 25, 2011

July 25, 2011, going on the sixth week since inoculation

and I think I've definitely got a touch of the Worm Flu definitely now. Nothing terrible -- more tired and my abdomen has this diffuse pain across it. It comes and goes. It's not unbearable or anything, just noticeable. The pain is what I'd describe as little bursts of intense sensation, almost like sparks of pain, particularly in spots across the underside of my diaphragm. There's a tender spot near my liver and another one on my left side, a little lower. Most of the time I'm not aware of it at all.

I'm still seeing a lot of overall improvement in my physical condition. The biggest one has been how much the swelling all over my body has gone down. It's really remarkable, especially since I didn't even realize before how bad it was, except in my ankles and wrists. My face looks much thinner and I can see and feel bony structures in it I never perceived as being there.

My little girl is not complaining of pain, but she seems grumpier than she's been in the last month and it's been hard for her to fall asleep. This is still an improvement over what her life was like on a daily basis, though. Her anxiety is still significantly lower. It makes a big difference in what our lives are like on a day to day basis.

Another pieces of great news for me has been that my extreme heat intolerance is gone. I learned this last Friday, when the heat index was a crazy 125°F where I live, hotter than I've ever experienced in my life. In Washington, DC, I had to walk about eleven blocks to and from where I'd parked my car and when I got to my destination, I was certainly very warm, but I wasn't about to collapse by any means. Previous summers, I have been extremely miserable in the heat. I used to tend to not perspire at all and now I was perspiring. I take this as an indication that my adrenal glands are doing much better.

Saturday, July 16, 2011

Worm Flu Starts to Set In (maybe?) 26 days past inoculation

After feeling fantastic for a longer period than I can ever remember 16 days in a row? 17?) , I am now starting to feel a bit tired. It might be not getting enough sleep, because I have to get up at six a.m. or earlier every day and I'm not getting to sleep by nine p.m., which would be optimal -- it's more like by 11 or later every day. I feel a bit draggy, but not really bad at all -- just tired. I should get to bed earlier, but life is complicated when you have kids to take care of. I know the worm flu will peak in about 16 days, but I guess it has to start somewhere.

My little girl is doing incredibly well. She is more tired too, but we are thrilled by the changes in her. She doesn't really seem to have any pain at all as opposed to the chronic pain she's lived with her entire life. Her appetite is up. She is very happy pretty much all the time. She told me yesterday, "I'm eating a lot faster, did you notice?" She has always been an extremely slow eater. I weighed her yesterday afternoon and the scale was three pounds higher (48.2) than when we went to CA, less than a month ago. That's not to say she's actually gained three pounds, but the scale was higher than it's ever been and finally higher than it was back in the end of January, before her big EE flare, when she stopped eating and drinking completely because she was in so much pain.

Recently I feel tiny pinching sensations in my tummy right under my ribs. I'm wondering if it's the worms getting settled in. It only hurts a little bit and usually for a few seconds.

The fatigue for me now is really light duty compared to what I've been through in the last eight years. We got our PhDs and post docs in sleep deprivation in our house, thanks to sick kids. You haven't lived as a zombie until you've gone almost a year living on less than four hours a night of sleep to the point of having hallucinations as you sit in a stupor, unable to complete a sentence. So this report on the fatigue is an observation and not even close to being a complaint.

Tuesday, July 12, 2011

Some thoughts and a quick update at the end of Week 3

I had an interesting and exciting thought today -- how much this therapy could potentially help all the people who are practically crippled with the fatigue and malaise of adrenal fatigue and how adrenal fatigue is probably yet another autoimmune disease given that the major treatment (if one can get any treatment) is steroids. Are they replacing the anti-inflammatories the adrenals themselves should be making or are they suppressing the autoimmune disease that's destroying the adrenals? I wonder if we're not seeing a whole new variety of autoimmune adrenal disease, similar to but not identical to Addison's to join all the other up and coming forms of autoimmune pathology. I also wonder that Addison's is only diagnosed when virtually all function of the adrenals is gone whereas most autoimmune disease is chronic and progressive over many years. Most autoimmune disease doesn't see the complete destruction of the affected organ instantaneously. Even in Type I diabetes, some pancreatic function can be preserved if it's treated in time and it takes considerable time for the complete loss of insulin production.

I am still feeling pretty darned good, which is a huge improvement over three weeks ago. I'm more tired than I was a week ago, but my productivity is pretty good and I slept very well last night, not really waking up to check the clock even one time. I made a laundry list of symptoms I've been dealing with for a long time and all of them are better, three weeks into this experiment. My heat intolerance is much, much better as I've noticed in the 100F+ temps we had yesterday and today. I'm waking at six a.m. now to get my son on the school bus for summer school and it's a lot easier than back on June 17. I've had very minor transient abdominal pain that sort of felt like a pinching sensation that only lasted for a few minutes.

My daughter is doing very well. She said she's more tired than usual, but she's sleeping better and her overall mood is greatly improved. We see a significant decrease in the anxiety she has to deal with all the time. I can hardly wait for the next nine weeks to go by for her to be able to trial some foods.

Monday, July 4, 2011

July 4, 2011 - I declare independence from my hyperimmunity!

Today is a great today. I was inoculated with twenty-five hookworms two weeks ago today and for the last five days in a row, I have been feeling totally fantastic!

This might not sound like a big deal but I have not had three days in a row of feeling terrific for decades. The only time I've felt what I used to think of as "normal" was when I was starting a course of prednisone and I'd catch one day of feeling really well on Day 1/2. To feel this good for five days in a row is just unprecedented. I haven't felt this well since around my twelfth birthday, which was when my allergies really kicked in. It's been a long litany of allergies, sinus infections, asthma and migraine headaches.

It's also remarkable because the last few weeks before we took our trip, I was so exhausted that I could barely function. I felt like getting to San Diego was the finish line of a race that I'd been running for decades. No amount of sleep made it any better.

It's really hard to know exactly what mechanism is in play, since I couldn't actually get any physician to figure out what was wrong with me. I suspect that my adrenal glands are finally getting a break as well as my general hyperimmunity that was attacking many different systems in my body. The degree of swelling all over my body but particularly in my face, wrists and ankles is markedly less. My husband says my body feels much less spongy. My allergic shiners are no longer bright purple.

My daughter is doing very well too. Most remarkably, she's having a hiatus from her constant generalized anxiety. We're not doing anything with increasing her food repertoire yet, but she's asked me if getting drowsy around 8:30 p.m. is how "normal" people feel. I'm very hopeful that she's going to be eating more real food in a couple of months.