Starting in 2007, I was mysteriously ill most of the time, with a chronic bleary state. I felt all the time as if I'd been woken up out of a deep sleep at 2 AM. Like there was a cloud in my head. My thinking was cloudy, and there was an almost palpable cloud, sitting in my head. I was too sick for anything except shopping, paying the bills, survival; too sick to stand up and paint, too sick to do math, too sick to socialize. To get the energy to go shopping on my bicycle, I would drink a lot of guarana (a Brazilian stimulant), take pseudoephedrine, and eat a lot of sweets to get a sugar high.
It took me years to figure it out.
From the beginning, I thought it might be allergies, because I had a long history of allergies and it felt similar to how allergies made me feel.
But it wasn't that simple.
For many years before that, along with my food problems I was somewhat sick most of the time with allergies, from spring to early fall. At one time, I had 53 inhalant allergies in skin tests.
I got allergy shots for five years, starting in 2001. I would get sick for days after each allergy shot, but my first allergist managed to get me up to concentrate on the allergy shots with dog in them, by increasing the shots with molds more slowly.
But then he moved out of town, and I ended up at another allergy practice. My first allergist had actually warned me that this allergy practice wouldn't help me. But they were my only option locally.
These new allergists started me out at the most diluted concentration for all my allergens, including dog. Somehow, the progress I had made with my allergy shots was thrown away. And I was never able to increase the dose of the shots, because I would get sick after the shots, and they didn't adjust my allergy shot doses separately like my first allergist did. And after years of shots with the lowest dose of all the allergens, they gave up and stopped giving me allergy shots.
In 2007, I started to waking up in a bleary state. I wasn't normally alert until noon or so. That winter I came down sick with sinusitis symptoms: dizziness, lots of mucus going down the back of my throat, facial pain, sick in bed. After months of antibiotics didn't help, I got a sinus CT scan, which was normal. A steroid nasal spray banished the symptoms for a few months.
But the following winter, I came down sick again: a heavy buzzy feeling, which turned into the same bleary state as before. It lasted later and later in the day until I was sick all the time. Doctors did a lot of tests. They found out I have Hashimoto's, an autoimmune thyroid disease. I was mildly hypothyroid. I wasted a year hoping that if I could get my thyroid levels right, I'd be OK. But then I was hyperthyroid for awhile and still sick, so I knew that wasn't it.
I saw a couple of allergists. But my allergy skin tests had become almost entirely negative, and both of the allergists discouraged me from looking for an allergy cause.
I still thought it might be environmental, so in 2009 I went to live in a no-pets hotel for a few days, visiting my house only to prepare meals and take care of my dog, with an allergy mask on. I didn't get any better, so I went home.
I felt as if I were living at the bottom of a deep well, with only trickles of light coming down to me, while people went about their lives, up above. Not able, in the darkness of my mind, to think clearly about how to get out. I spent my time puddling on the internet, surfing, watching videos.
Finally in January 2011, I noticed that my grain mills, even though they were clean white plastic outside, might have mold inside, because I hadn't been cleaning them. I had noticed that I got suddenly sicker sometimes after using them.
They were very moldy and it helped to keep them clean, but I was still very sick.
I took apart my bathroom and threw out a lot of moldy wood and drywall, but it didn't help.
I realized then that I should try living in the hotel again, without the mold in my food. This time, I DID get well, after about a week! This was in June 2011. For the first time in a year and a half, I was in a normal alert state of consciousness.
Then I went to the SPCA and I spent 4 hours sitting next to dogs and cuddling them. I started to feel quite out of it after 2 hours.
When I got out of the SPCA, I was walking very slowly and spaced out. My mind was skittering around so much I could hardly read - something I associate with histamine. I went back to the hotel. That night my eyeballs were itching. I spent a lot of time in bed the next few days. I had insomnia, another histamine symptom. Three days later, I went home, still rather sick. And I got sicker again the day I came home.
I told the allergist I was seeing that I had a dog allergy. He repeated the allergy skin testing, but it was still almost entirely negative. I asked him whether I could have a dog allergy anyways. He hesitated and muttered some things under his breath, then told me I couldn't!So I looked on Medline. I found that researchers have known for years that you can have inhalant allergies with negative skin tests. It's called local allergic rhinitis. It seems that more than 40% of people who've been diagnosed with nonallergic rhinitis, actually have local allergic rhinitis - so it's fairly common. Allergy shots might work for local allergic rhinitis. There's a continuing medical education course online about it. The evidence for local allergies in various organs is reviewed in a 2010 paper. It's possible that chronic allergic reactions might cause local allergic rhinitis, by changing the tissues so they take up more IgE.
However, very few allergists do the specialized testing necessary to diagnose local allergic rhinitis - perhaps it's only available in a research setting. I read that the University of Virginia medical center can test for it.
The allergists I saw, hadn't heard of local allergic rhinitis. They aren't keeping up with their field - a common problem with doctors! They're occupied with their jobs and don't read the research.
I realized there was a wall below ground level in my house, that might have mold in it. I took it apart, and it was really, really bad. The wall was drywall nailed onto wood 1x3's, which were nailed onto concrete block. Water was seeping through the concrete block, and the wood 1x3's were extremely moldy, and so rotten near the bottom that they'd fallen to pieces.
I rented an airline respirator, in the form of a sandblaster's hood, to clean out the mold. If you have allergies, you may have fantasized: When I have to be some place with allergenic air, why can't I just breathe through a tube that goes out to clean air? Well you can! These respirators use an electric pump that sits in clean air and pumps air to you through about 50-200 feet of hose, to a facemask. It was incredible to clean out all that mold and not get sick.
But I still wasn't OK after cleaning the mold out. So I bought an airline respirator. I found that if I used the respirator ALL the time I was inside my house, even while sleeping, I was maybe 80% better. I felt my mind coming back; I didn't have to get a sugar high to go out, but there was still a hayfeverish haze in my mind, all the time. I ate outside, brushed my teeth outside, talked on the phone outside, sometimes in snow and rain.
About once every couple weeks, I had some kind of accident, like a hose getting disconnected on the respirator, or the respirator breaking down, and I would get really sick for 5-6 days. This happened about once every couple of weeks.
I thought maybe if my dog were living outside, I would get well. I wasn't able to find a commercial kennel that was very well insulated, so I built a kennel for her.
It was a lot of work, and it was delayed a lot because my neighbor complained to the police about the noise from the respirator motor. He hates the noise of motors a lot, so the city prosecutor forced me to do a lot of things to quiet the motor. But finally on June 15 2012, my dog was out of my house.
But I was still sick. I found that the more I avoided dog allergen, the more sensitive I became to it.
Finally, in Jsnuary 2013, I put my dog in a kennel and went to live in the no-pets hotel.
But this time, I didn't get well. I was still fuzzy-headed, even living in the hotel.
In March, I went to see a new allergist in NYC. Thankfully, he did believe that I had allergies, even though my allergy testing had become negative. He started me on a very expensive asthma drug called Xolair. It's IgG antibodies to IgE antibodies. Over time, it's supposed to greatly decrease allergic reactions.
It helped me some, but it didn't end my allergies.
After living in the hotel for five months, I ended up renting a new mobile home in a no-dogs park.
But I was still sick with non-stop allergic reactions. I got so sensitive to dogs that if a dog went by me in a car and I was downwind, I would get sick for five days. Even if I was wearing an allergy mask.
So my allergist offered to give me allergy shots, even with negative allergy tests.
I got allergy testing from him. This time, allergies did show up in the allergy tests! Just some new mold allergies showed up, though - not dog.
In February 2014, I started getting allergy shots, including dog and other allergens that I didn't test positive to. My allergist used my old allergy test results to design the allergy shots.
I get sick from the shots - for days sometimes - but this time I've been able to build up the dosage, maybe because of the Xolair. I've taken charge of the allergy shot doses as much as I can, to ensure I DO make progress.
Now, a year later, I'm better. My allergic reactions to dogs last less than two days, and I don't get nearly as sick.
But I'm still extremely sensitive. I do my grocery shopping early in the morning on weekdays, because it's less likely a dog will have been there.
One time, I went to the supermarket at 3 PM. I started feeling hazy, like I was having an allergic reaction. I asked the cashier if a dog had been there. She told me there was a dog there at 10 AM!
I did get sick later. I think it was the dog that made me sick, because most days, no dog is in the supermarket, and this was the first time I'd felt like I was having an allergic reaction in a supermarket and asked if a dog had been there.
My life is horribly restricted by my dog allergy. I go out as little as possible to avoid allergic reactions. I wear a full face mask when I'm outside my home. I'm still living in the mobile home. I went to my house the other day and spent about 45 minutes there, using the airline respirator. And I got sick from that.
Very slowly, I'm getting over my allergy, but there have been no miracles.
I miss my dog terribly. She's being taken care of by a petsitter. She's my substitute family. Dogs really are a pretty good answer to bad experiences with people - if you aren't allergic to them. But unfortunately, other people have found out the same thing, which is why somebody's doggy pal sitting in a car in the parking lot, or hanging out of the window grinning in a car whizzing by, is such a hazard to me.
I'm super-allergic to cats also. I read that a minor dog allergen cross-reacts with the main cat allergen. But people don't take their cats everywhere like they do dogs, so that isn't much of a problem.
How did my allergies get this bad?
Chronic exposure might have changed the tissues in my nose, so that they became a lot more sensitive. But I'd lived with a dog for many years before that. I had a dog allergy, but it was mild. Why did it end up so bad?
Negligent doctors are part of it. If the allergists had cared enough to get my allergy shots to work the first time, this probably wouldn't have happened to me. I live in a small town with no car, so I was stuck with the cookbook allergists here.
The mold in my house might have caused it. Someone told me he lived in a house with mold in it, and after he left, he had many severe allergies for about four years.
I was on antibiotics for months at a time because of recurrent urinary tract infections, and that's been connected with allergies. I've learned a lot about preventing UTI's. I found out that when you flush a toilet, it creates an aerosol of the toilet bowl water, which evaporates and leaves tiny particles with E. Coli on them floating in the air, to settle nearby. So keeping the toilet bowl clean, and putting the lid down before flushing, are very important. I haven't been on antibiotics for a long time.
People's allergies are regulated in their GI tract, and the microorganisms in the gut have a big influence. So I try not to eat too much sugar, and I make lacto-fermented vegetables in anaerobic pickling jars.
I also have many delayed-reaction food allergies. It helped me enormously emotionally when I quit eating the foods I was allergic to. But I suspect I might have inadvertently messed up my immune system by quitting all those foods. That's because I read about the homeostatic mechanisms that regulate allergy in the gut, and I realized that when a delayed-reaction food allergy is "hidden", that's probably part of a homeostatic mechanism which is trying to make the allergy go away. One's body does things to suppress the symptoms of delayed-reaction food allergies, and those mechanisms may help suppress inhalant allergy reactions as well. So I've reintroduced many of the foods I'm allergic to in tiny amounts (a few milligrams), taking allergy medications beforehand to reduce the reaction. I hope to build up my tolerance to those foods over time.
How many people with disabling symptoms like mine, have ended up diagnosed with chronic fatigue syndrome - which is just a description of symptoms, not a real diagnosis - when allergy tests were negative? How many people go to therapy and take psychiatric drugs, when they really have delayed-reaction food allergies? How many people go to doctors and aren't helped, because they need to do experiments such as I did - but they think only a professional can help, and their own rationality can't do much?