Monday, August 29, 2011

Wrapping up ten weeks -- real "Worm Flu" hits the fan

Since getting my tooth filled back on August 10, it seems my 25 Necator americanus friends have had a rough time of it and my immune system has been back to its boffo self. I have been very tired. I notice this particularly in a desire to sleep in mornings. I'm sure it will be getting better, but I've had a few days of being quite exhausted. It comes and it goes. In no way do I feel as terrible as I did before getting inoculated and that's a major relief. It's kind of horrifying to realize how bad I felt all the time.

The redness of my eyes that I noticed started right when I was inoculated is also coming and going. The redder my eyes, the more my hookworm buddies seem to be doing their thing. So now I'm actually happy to look in the mirror and see that redness when I'm feeling good. I had a day of feeling quite fantastic a few days ago and I'm hoping to see my worms getting better and better.

My daughter is doing pretty well. She's had a few bad days. We've probably been too liberal with the food experimentation, but it's very hard when the poor kid has spent years dying to eat like a normal person, especially after months of eating nothing but soy pancakes. It's interesting, her primary food incursion symptom presents as extreme grumpiness and agitation. She's not consciously aware of being in pain, instead she becomes hypersensitive and very irritable. But overall, she's doing quite well. I'm so looking forward to seeing if she gets major traction in the ability to eat. I'm so happy to see that she's willing to eat and experiment and she's not afraid of eating most of the things that have been no-nos for her. She has told me repeatedly that she feels her appetite is much better. She's also sleeping well, which indicates lower levels of pain. She's grown since being inoculated, her feet are much bigger than they were two months ago. Considering she's eight and a half years old and wearing toddler size shoes, this is no small thing.

Saturday, August 13, 2011

Eight weeks in August 10, 2011 -- I get a tooth filled with lidocaine anesthesia

Unfortunately, I didn't make it to the dentist before going and getting inoculated with worms. I thought I didn't have that much to worry about, only having had one cavity in the preceding 45 years. Dealing with a very sick kid doesn't leave a lot of discretionary time or money for things like going to the dentist. Being so sick and exhausted yourself doesn't make it any easier, either. Our financial situation has not made it possible for me to go to the dentist for years but I'm lucky to have pretty good teeth.

I went in for my cleaning and exam appointment and found out I had a huge cavity in my farthest back molar on the upper right side. First I thought I'd get the molars on that side extracted. The dentist wasn't too thrilled about that idea because of my "advanced age" and I was even more concerned about the anesthesia choices. When my provider told me that my worms should be able to survive novocaine, I decided I'd go that route and just have the tooth filled. Skipping anesthesia would be out of the question, given the extent and severity of decay in my tooth.

I hope this account will be of interest to those considering hosting or actually hosting helminths. I have seen no one else actually write of the experience of having a local anesthetic and what it did to their hookworms. The conventional wisdom is that the hookworms will be compromised in their ability to function for as little as four or as much as eight weeks. This account should provide some specifics, though it's still unfolding as I only had the tooth filled three days ago.

The cavity I had was so huge, the dentist spent over an entire hour just drilling the decay out of this one tooth. I was very lucky that the decay was diffuse around the tooth and it hadn't gotten into the pulp chambers, the nerves or the blood supply. It took an additional hour to put the filling in. Fun times!

When the lidocaine wore off, I had pain in my sinus nerves, not the tooth that had been filled.

Day One after having my tooth filled, I felt horrible. Exhausted and achy, instantaneously back to the way I felt all the time before I got inoculated back in the end of June. My ankles and wrists are swelling. My sinuses were painful through my eye teeth on both sides. The exhaustion is unbelievable. No caffeine helped at all, it just makes things worse, a sign of my adrenal fatigue rearing its ugly head. I also felt brain fog seeping back in. I was so tired that I could barely drive home at 6 p.m. and went straight to bed at 6:30. I had to get up and deal with kids from 9:45 to about 10:45, but I slept through until 6:30 the next morning. A woman I work with asked me why my face was so red and sure enough, my rosacea was in full bloom.

Day Two, got up at 6:30, went to Starbucks for coffee and came back home and went back to bed to sleep until I had to leave for my job at 11 a.m. Still exhausted and achy, still beset with brain fog. I think my adrenals and thyroid are affected as I feel noticeably colder, especially in the evenings when I'm going to bed. I would have moments of feeling like, "Hey, I'm OK, the worms must be doing better" and then feel like I was crashing and had to go to bed immediately five minutes later. I anticipate quite a bit of that in the future. I can feel the squishiness in my tissues on the tops of my arms, below the wrists and towards the elbows. My husband said he can feel it too, but that it's far less severe still than before inoculation.

Today is Day Three and I woke up with some of the generalized anxiety that was part and parcel of life before hookworms. It sucks. I sure hope my twenty-five old friends start feeling a lot better very soon.

As miserable as this experience is, it leaves no doubt for me how much the hookworms were affecting my body for the better. It is the difference between night and day.

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.

Monday, May 16, 2011

The journey of a thousand miles starts with a single step...

Today, I went and saw Dr. C who will be supervising my treatment with helminths.

If you, Dear Reader, are like most people, then you must be wondering what kind of freaky weirdo I am that I would consider voluntarily becoming infested with a parasite. It's such an extreme and horrible idea, especially for Americans who are engaged on the path of trying to live in an abiotic world.

If having parasites seems extreme and horrible, then consider the idea of never eating food ever again. This is where we are at with my eight year old daughter. She has a supposedly rare disease called eosinophilic esophagitis. It's an autoimmune disease where the cells of her esophagus are attacked by her own blood cells, called eosinophils. It's extremely painful and debilitating and the treatment is not eating foods to which the body reacts. For my daughter, that is most foods. She is down to eating next to nothing, only soymilk pancakes with soymilk to drink. She is extremely thin and barely growing, weighing 46 pounds now at eight years and three months of age. She has tested positive for about 18 common foods, but beyond that, she is reactive to many, many more and simply will not eat them. The lives of everyone in our family are profoundly affected by her disease. We have explored the research on helminths and are pursing treatment for her. I was thrilled to find out I could be treated too on the same trip.

My husband and I are both people with severe allergies. I am very allergic to trees and grasses and to a lesser extent dust and mold. He is extremely allergic to dust and mold primarily and also trees and grasses. I get severe reactive asthma and non-stop sinus infections from my allergies. I have been on prednisone for months at a time. I am now at the point of being sick pretty much all the time. I have no energy from my body fighting off dust, mold, and pollen. I take medication 365 days a year and I am not well, despite it. I have gotten worse and worse for over 30 years now. I cannot cut grass or garden in the spring, I cannot have windows open, the tissues of my nasal passages are swollen shut permanently. I now have horrendous migraine headaches.