Allergy Hell

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.

After years of searching, I discovered I was sick because of my dog, and because of mold in the air and in my food. But I got intradermal skin testing for allergies, and that showed I have almost no allergies left. I asked the allergist I was seeing whether I could have a dog allergy anyways. He hesitated and muttered some things under his breath, then told me I couldn't!

My first thought was that I might have delayed, possibly non-IgE inhalant allergies, just like I have delayed food allergies. So I looked on Medline. I found that researchers have known for years that you can have local allergies in the nose, even with negative intradermal allergy 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 allergists I saw, hadn't heard of local allergic rhinitis. They aren't keeping up with their field. It seems they are lazy and greedy, spending all their time providing medical care that they can charge a lot of money for, rather than educating themselves. If they had taken a few minutes a day to read a blog summarizing the latest allergy research, they would have known about it days after the article on it appeared.

I probably have local allergic rhinitis. Maybe I got local allergies because my nose and sinuses are irritated by mold. But I probably couldn't get diagnosed locally. I read that the University of Virginia medical center can test for it.

How many people with disabling symptoms like mine, have ended up diagnosed with chronic fatigue syndrome, left without hope, when allergy tests were negative? It took me years to figure it out.

Here is the story of how I finally figured it out; and how to help heal yourself, a skill so painfully learned from Allergy Hell.

For years, 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 tried for years to get allergy shots, but I would get sick for days after each shot, and I eventually quit.

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 a while and still sick, so I knew that wasn't it.

I thought it might be environmental, so in 2009 I went to live in a motel 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 saw that my grain mills, even though they were clean white plastic outside, might have mold inside, because I hadn't been cleaning them. I'd noticed I felt like I'd "gotten a dose", that I got suddenly sicker sometimes after using them. It helped to keep them clean, but I was still 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 motel again, without the mold in my food. This time, I DID get well, after about a week! 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 motel. 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.

Over the next few months I did many things to reduce my dog allergen exposure, and I was maybe 50% better. Medications didn't help much.

Then, I put my dog in a kennel. After a couple weeks, I felt somewhat better but not OK.That made me realize I should clean the mold out of a wall below ground level in my house.

Then I went to live in a motel again. After nine days in the motel, when I was feeling OK again, I visited my dog at the kennel. I went for a short walk with her outdoors, without my HEPA filter mask on. Then with the filter mask on, I spent about a minute in the kennel area saying goodbye to her. And I got sick from this! It wasn't nearly as severe as after I spent 4 hours at the SPCA cuddling dogs, but I was still sick and impaired. So, even though I don't have a dog allergy according to intradermal tests, not only do I actually have a dog allergy - I'm quite sensitive!

After I and my dog were back home again, I took the mold out of the basement wall. It was really, really bad - bad enough that it might be an underlying cause of my problems. 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 actually use an electric pump that sits in clean air and pumps air to you through about 50-200 feet of hose. I bought one that pumps air to a facemask for about $400. It's comfortable enough to wear all the time while I'm indoors, even while sleeping.

Since this is apparently a self-reinforcing inflammation, I hope if I successfully avoid being exposed for a few months, my dog allergy will go away. Some of my other allergies, like grass pollen and Candida, got a lot better when the intradermal tests for them became negative, which also suggests that avoiding exposure will work.

Here's what I've learned from this terrible experience:
Just seeing doctors and gathering medical info isn't enough. Sometime you need to experiment on yourself. The doctors couldn't tell me which allergy was bothering me or even that it was allergies. When you have a very puzzling illness, it helps to act as your own doctor, as well as seeing doctors. The standard model is for the patient to be passive. With this sickness I could have saved YEARS of my life by not being passive. And thousands of dollars in unnecessary tests, like a brain MRI. When I got well after a week of living in a motel, that eliminated a huge number of possibilities at one stroke.
Be logical and analytical about it. When I stayed in the motel in 2009 and didn't get well, I could have stayed on at the motel, stopped eating at home, started a hypoallergenic elimination diet. I wouldn't have been eating mold from the flour mills and I would have gotten well.
But I felt defeated and hopeless when I didn't get well. I was sticking my neck out in doing the motel experiment and violating the passive-patient model, and spending money, and when it didn't work, I didn't persist.
When I was at the bottom of the well, I kept thinking of successful creative writers: they would not LET themselves be struck down for years with a mystery illness! They would, perhaps crudely, solve the problem: by leaving everything and moving 1000 miles away, say.
I was struck down by a deep sense of hopelessness, being overwhelmed by misfortune. It came from my childhood, where there was NOTHING I COULD DO except to leave emotionally. I couldn't leave physically so I left emotionally.
My picture of the world (it's a child's picture) is of a place where anything can happen. I have a newer picture that the world does have laws and that reason solves problems in the world, not just math problems. But the old picture is still in the background.
And I couldn't think well and I had no energy, so it was hard to be rational and do experiments. It's hard to get myself to do things when I'm sick.
It's a basic principle of environmental illness, to get healthy and then try one thing at a time to see if you get symptoms. What I did was like an elimination diet and food challenges, only with inhalants.
If it's environmental, it might be from multiple causes - it was for me. If you have both food and inhalant problems, it's harder to notice correlations. Along with going to a hypoallergenic environment, you could go on a hypoallergenic elimination diet, or even a elemental diet if necessary, and see if that makes you well.
Probably a lot of people who been diagnosed with chronic fatigue syndrome actually have an environmental illness. I've fit the diagnostic criteria for CFS, and it creeps me out to think that, except for a lot of self-diagnosis, I might make an identity out of having a mysterious and incurable disease. Some people marry that identity; it's a miserable, destructive thing to do.
And don't theorize that your illness is due to something medically improbable, unless you really have eliminated the likely possibilities, like a dust allergy or food sensitivity. I read about people who decided the water was making them sick, or tiny amounts of organic vapors from the walls, or invisible traces of corn on strawberries. When they started thinking for themselves, they discarded what medicine already knows. Yes, think for yourself - but start with the likely, medically accepted possibilities.